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Affirmative action 2.0
The recent decisions by the United States Supreme Court (SCOTUS) declaring the current admission policies at Harvard and the University of North Carolina illegal have sent shock waves through the university and graduate school communities. In the minds of many observers, these decisions have effectively eliminated affirmative action as a tool for leveling the playing field for ethnic minorities.
However, there are some commentators who feel that affirmative action has never been as effective as others have believed. They point out that the number of students admitted to the most selective schools is very small compared with the entire nation’s collection of colleges and universities. Regardless of where you come down on the effectiveness of past affirmative action policies, the SCOTUS decision is a done deal. It’s time to move on and begin anew our search for inclusion-promoting strategies that will pass the Court’s litmus test of legality.
I count myself among those who are optimistic that there are enough of us committed individuals that a new and better version of affirmative action is just over the horizon. Some of my supporting evidence can be found in a New York Times article by Stephanie Saul describing the admissions policy at the University of California Davis Medical School. The keystone of the university’s policy is a “socioeconomic disadvantage scale” that takes into account the applicant’s life circumstances, such as parental education and family income. This ranking – on a scale of 0 to 99 – is tossed into the standard mix of grades, test scores, essays, interviews, and recommendations. It shouldn’t surprise that UC Davis is now one of the most diverse medical schools in the United States despite the fact that California voted to ban affirmative action in 1996.
The socioeconomic disadvantage scale may, in the long run, be more effective than the current affirmative action strategies that have been race based. It certainly makes more sense to me. For example, in 2020 the Medical College Admission Test (MCAT) made a significant philosophical change by broadening and deepening its focus on the social sciences. To some extent, this refocusing may have reflected the American Association of Medical Colleges’ search for more well-rounded students and, by extension, more physicians sensitive to the plight of their disadvantaged patients. By weighting the questions more toward subjects such as how bias can influence patient care, it was hoped that the newly minted physicians would view and treat patients not just as victims of illness but as multifaceted individuals who reside in an environment that may be influencing their health.
While I agree with the goal of creating physicians with a broader and more holistic view, the notion that adding questions from social science disciplines is going to achieve this goal never made much sense to me. Answering questions posed by social scientists teaching in a selective academic setting doesn’t necessarily guarantee that the applicant has a full understanding of the real-world consequences of poverty and bias.
On the other hand, an applicant’s responses to a questionnaire about the socioeconomic conditions in which she or he grew up is far more likely to unearth candidates with a deep, broad, and very personal understanding of the challenges that disadvantaged patients face. It’s another one of those been-there-know-how-it-feels kind of things. Reading a book about how to ride a bicycle cannot quite capture the challenge of balancing yourself on two thin wheels.
The pathway to becoming a practicing physician takes a minimum of 6 or 7 years. Much of that education comes in the form of watching and listening to physicians who, in turn, modeled their behavior after the cohort that preceded them in a very old system, and so on. There is no guarantee that even the most sensitively selected students will remain immune to incorporating into their practice style some of the systemic bias that will inevitably surround them. But a socioeconomic disadvantage scale is certainly worth a try.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
The recent decisions by the United States Supreme Court (SCOTUS) declaring the current admission policies at Harvard and the University of North Carolina illegal have sent shock waves through the university and graduate school communities. In the minds of many observers, these decisions have effectively eliminated affirmative action as a tool for leveling the playing field for ethnic minorities.
However, there are some commentators who feel that affirmative action has never been as effective as others have believed. They point out that the number of students admitted to the most selective schools is very small compared with the entire nation’s collection of colleges and universities. Regardless of where you come down on the effectiveness of past affirmative action policies, the SCOTUS decision is a done deal. It’s time to move on and begin anew our search for inclusion-promoting strategies that will pass the Court’s litmus test of legality.
I count myself among those who are optimistic that there are enough of us committed individuals that a new and better version of affirmative action is just over the horizon. Some of my supporting evidence can be found in a New York Times article by Stephanie Saul describing the admissions policy at the University of California Davis Medical School. The keystone of the university’s policy is a “socioeconomic disadvantage scale” that takes into account the applicant’s life circumstances, such as parental education and family income. This ranking – on a scale of 0 to 99 – is tossed into the standard mix of grades, test scores, essays, interviews, and recommendations. It shouldn’t surprise that UC Davis is now one of the most diverse medical schools in the United States despite the fact that California voted to ban affirmative action in 1996.
The socioeconomic disadvantage scale may, in the long run, be more effective than the current affirmative action strategies that have been race based. It certainly makes more sense to me. For example, in 2020 the Medical College Admission Test (MCAT) made a significant philosophical change by broadening and deepening its focus on the social sciences. To some extent, this refocusing may have reflected the American Association of Medical Colleges’ search for more well-rounded students and, by extension, more physicians sensitive to the plight of their disadvantaged patients. By weighting the questions more toward subjects such as how bias can influence patient care, it was hoped that the newly minted physicians would view and treat patients not just as victims of illness but as multifaceted individuals who reside in an environment that may be influencing their health.
While I agree with the goal of creating physicians with a broader and more holistic view, the notion that adding questions from social science disciplines is going to achieve this goal never made much sense to me. Answering questions posed by social scientists teaching in a selective academic setting doesn’t necessarily guarantee that the applicant has a full understanding of the real-world consequences of poverty and bias.
On the other hand, an applicant’s responses to a questionnaire about the socioeconomic conditions in which she or he grew up is far more likely to unearth candidates with a deep, broad, and very personal understanding of the challenges that disadvantaged patients face. It’s another one of those been-there-know-how-it-feels kind of things. Reading a book about how to ride a bicycle cannot quite capture the challenge of balancing yourself on two thin wheels.
The pathway to becoming a practicing physician takes a minimum of 6 or 7 years. Much of that education comes in the form of watching and listening to physicians who, in turn, modeled their behavior after the cohort that preceded them in a very old system, and so on. There is no guarantee that even the most sensitively selected students will remain immune to incorporating into their practice style some of the systemic bias that will inevitably surround them. But a socioeconomic disadvantage scale is certainly worth a try.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
The recent decisions by the United States Supreme Court (SCOTUS) declaring the current admission policies at Harvard and the University of North Carolina illegal have sent shock waves through the university and graduate school communities. In the minds of many observers, these decisions have effectively eliminated affirmative action as a tool for leveling the playing field for ethnic minorities.
However, there are some commentators who feel that affirmative action has never been as effective as others have believed. They point out that the number of students admitted to the most selective schools is very small compared with the entire nation’s collection of colleges and universities. Regardless of where you come down on the effectiveness of past affirmative action policies, the SCOTUS decision is a done deal. It’s time to move on and begin anew our search for inclusion-promoting strategies that will pass the Court’s litmus test of legality.
I count myself among those who are optimistic that there are enough of us committed individuals that a new and better version of affirmative action is just over the horizon. Some of my supporting evidence can be found in a New York Times article by Stephanie Saul describing the admissions policy at the University of California Davis Medical School. The keystone of the university’s policy is a “socioeconomic disadvantage scale” that takes into account the applicant’s life circumstances, such as parental education and family income. This ranking – on a scale of 0 to 99 – is tossed into the standard mix of grades, test scores, essays, interviews, and recommendations. It shouldn’t surprise that UC Davis is now one of the most diverse medical schools in the United States despite the fact that California voted to ban affirmative action in 1996.
The socioeconomic disadvantage scale may, in the long run, be more effective than the current affirmative action strategies that have been race based. It certainly makes more sense to me. For example, in 2020 the Medical College Admission Test (MCAT) made a significant philosophical change by broadening and deepening its focus on the social sciences. To some extent, this refocusing may have reflected the American Association of Medical Colleges’ search for more well-rounded students and, by extension, more physicians sensitive to the plight of their disadvantaged patients. By weighting the questions more toward subjects such as how bias can influence patient care, it was hoped that the newly minted physicians would view and treat patients not just as victims of illness but as multifaceted individuals who reside in an environment that may be influencing their health.
While I agree with the goal of creating physicians with a broader and more holistic view, the notion that adding questions from social science disciplines is going to achieve this goal never made much sense to me. Answering questions posed by social scientists teaching in a selective academic setting doesn’t necessarily guarantee that the applicant has a full understanding of the real-world consequences of poverty and bias.
On the other hand, an applicant’s responses to a questionnaire about the socioeconomic conditions in which she or he grew up is far more likely to unearth candidates with a deep, broad, and very personal understanding of the challenges that disadvantaged patients face. It’s another one of those been-there-know-how-it-feels kind of things. Reading a book about how to ride a bicycle cannot quite capture the challenge of balancing yourself on two thin wheels.
The pathway to becoming a practicing physician takes a minimum of 6 or 7 years. Much of that education comes in the form of watching and listening to physicians who, in turn, modeled their behavior after the cohort that preceded them in a very old system, and so on. There is no guarantee that even the most sensitively selected students will remain immune to incorporating into their practice style some of the systemic bias that will inevitably surround them. But a socioeconomic disadvantage scale is certainly worth a try.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
Alzheimer’s disease: To treat or not?
Mr. Jones has Alzheimer’s disease, recently diagnosed.
His wife is a retired hospice nurse, who’s seen plenty of patients and families deal with the illness over the years.
She came in recently, just herself, to go over his treatment options and what can be reasonably expected with them. So we went through the usual suspects, new and old.
I intermittently stopped to ask if she had any questions. At one such break she suddenly said:
“I’d rather he die now than be treated with any of these.”
I tried to address her safety concerns with the different medications, but that wasn’t the issue. Her real, and understandable, point is that none of them are cures. They don’t even stop the disease. Realistically, all we’re doing is slowing things down for maybe a year at most.
Families are different, and no one can really know how they’ll react in this situation until it happens.
Some will want me to do a full-court press, because another year of time is more family gatherings and independence, maybe a grandchild’s birth or wedding, or just being able to keep someone at home longer before starting to look into the cost of memory care.
Others, like Mrs. Jones, don’t see a point. The disease is incurable. Why bother to prolong it when the end is the same? Is it worth adding another year of medications, adult diapers, and the occasional 911 call if they wander off?
That’s a valid view, too. She wasn’t advocating a cause, such as euthanasia, but she did have legitimate concerns.
For all the marketing hype over Leqembi today or Cognex (remember that?) in 1989, the issue is the same. We have new and shinier toys, but still no cures. Whether it’s worth it to prolong life (or suffering) is a glass half-full or half-empty question that only patients and their families can answer.
It ain’t easy.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
Mr. Jones has Alzheimer’s disease, recently diagnosed.
His wife is a retired hospice nurse, who’s seen plenty of patients and families deal with the illness over the years.
She came in recently, just herself, to go over his treatment options and what can be reasonably expected with them. So we went through the usual suspects, new and old.
I intermittently stopped to ask if she had any questions. At one such break she suddenly said:
“I’d rather he die now than be treated with any of these.”
I tried to address her safety concerns with the different medications, but that wasn’t the issue. Her real, and understandable, point is that none of them are cures. They don’t even stop the disease. Realistically, all we’re doing is slowing things down for maybe a year at most.
Families are different, and no one can really know how they’ll react in this situation until it happens.
Some will want me to do a full-court press, because another year of time is more family gatherings and independence, maybe a grandchild’s birth or wedding, or just being able to keep someone at home longer before starting to look into the cost of memory care.
Others, like Mrs. Jones, don’t see a point. The disease is incurable. Why bother to prolong it when the end is the same? Is it worth adding another year of medications, adult diapers, and the occasional 911 call if they wander off?
That’s a valid view, too. She wasn’t advocating a cause, such as euthanasia, but she did have legitimate concerns.
For all the marketing hype over Leqembi today or Cognex (remember that?) in 1989, the issue is the same. We have new and shinier toys, but still no cures. Whether it’s worth it to prolong life (or suffering) is a glass half-full or half-empty question that only patients and their families can answer.
It ain’t easy.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
Mr. Jones has Alzheimer’s disease, recently diagnosed.
His wife is a retired hospice nurse, who’s seen plenty of patients and families deal with the illness over the years.
She came in recently, just herself, to go over his treatment options and what can be reasonably expected with them. So we went through the usual suspects, new and old.
I intermittently stopped to ask if she had any questions. At one such break she suddenly said:
“I’d rather he die now than be treated with any of these.”
I tried to address her safety concerns with the different medications, but that wasn’t the issue. Her real, and understandable, point is that none of them are cures. They don’t even stop the disease. Realistically, all we’re doing is slowing things down for maybe a year at most.
Families are different, and no one can really know how they’ll react in this situation until it happens.
Some will want me to do a full-court press, because another year of time is more family gatherings and independence, maybe a grandchild’s birth or wedding, or just being able to keep someone at home longer before starting to look into the cost of memory care.
Others, like Mrs. Jones, don’t see a point. The disease is incurable. Why bother to prolong it when the end is the same? Is it worth adding another year of medications, adult diapers, and the occasional 911 call if they wander off?
That’s a valid view, too. She wasn’t advocating a cause, such as euthanasia, but she did have legitimate concerns.
For all the marketing hype over Leqembi today or Cognex (remember that?) in 1989, the issue is the same. We have new and shinier toys, but still no cures. Whether it’s worth it to prolong life (or suffering) is a glass half-full or half-empty question that only patients and their families can answer.
It ain’t easy.
Dr. Block has a solo neurology practice in Scottsdale, Ariz.
As psychiatrists, do we offer hope or do we offer death?
I remember what it was like to be a medical student at a well-known cancer hospital where patients were dying of cancer. In life’s final stages, it was not uncommon for physicians to increase the dose of morphine; it alleviated pain, eased labored breathing, and yes, probably hastened the inevitable for patients who were in their final hours. In these scenarios, no one considered this euthanasia, and no one questioned whether it was the right thing to do.
Fast-forward to 2023 when the act of a physician hastening a patient’s death has become a controversial topic as criteria have expanded. Like all such topics in our polarized society, people aligned on sides, politics and religion rush to the head of the room, legislation is proposed, and words take on new meanings. If you’re in favor of legalization of clinician assistance in a patient’s death, the term is “medical assistance in dying”. If you’re opposed, the term is the more graphic physician-assisted suicide.
The scenario is entirely different from what I saw in my medical school rotations decades ago. It’s no longer an issue of easing the pain and discomfort of patients’ final hours; the question now is whether, faced with a potentially terminal or progressively debilitating physical illness, a patient has the right to determine when, and how, their life will end, and the medical profession is given a role in this.
In many places the bar has been further lowered to incorporate nonterminal conditions, and Belgium and the Netherlands now allow physician-facilitated suicide for psychiatric conditions, a practice that many find reprehensible. In these countries, patients may be provided with medications to ingest, but psychiatrists also administer lethal injections.
While Belgium and the Netherlands were the first countries to legalize physician-facilitated death, it could be argued that Canada has embraced it with the most gusto; physician-assisted suicide has been legal there since 2016.
Canada already has the largest number of physician-assisted deaths of any nation, with 10,064 in 2021 – an increase of 32% from 2020. The Canadian federal government is currently considering adding serious mental illness as an eligible category. If this law passes, the country will have the most liberal assisted-death policy in the world. The Canadian government planned to make serious mental illness an eligible category in March 2023, but in an eleventh-hour announcement, it deferred its decision until March 2024.
In a press release, the government said that the 1-year extension would “provide additional time to prepare for the safe and consistent assessment and provision of MAID in all cases, including where the person’s sole underlying medical condition is a mental illness. It will also allow time for the Government of Canada to fully consider the final report of the Special Joint Committee on MAID, tabled in Parliament on Feb. 15, 2023.”
As a psychiatrist who treats patients with treatment-refractory conditions, I have watched people undergo trial after trial of medications while having psychotherapy, and sometimes transcranial magnetic stimulation or electroconvulsive therapy (ECT). The thing that is sustaining for patients is the hope that they will get better and go on to find meaning and purpose in life, even if it is not in the form they once envisioned.
Where is the line, one wonders, when the patient has not responded to two medications or 12? Must they have ECT before we consider helping them end their lives? Do we try for 6 months or 6 years? What about new research pointing to better medications or psychedelics that are not yet available? According to Canada’s proposed legislation, the patient must be aware that treatment options exist, including facilitated suicide.
Physician-assisted suicide for psychiatric conditions creates a conundrum for psychiatrists. As mental health professionals, we work to prevent suicide and view it as an act that is frequently fueled by depression. Those who are determined to die by their own hand often do. Depression distorts cognition and leads many patients to believe that they would be better off dead and that their loved ones would be better off without them.
These cognitive distortions are part of their illness. So, how do we, as psychiatrists, move from a stance of preventing suicide – using measures such as involuntary treatment when necessary – to being the people who offer and facilitate death for our patients? I’ll leave this for my Canadian colleagues to contemplate, as I live in a state where assisted suicide for any condition remains illegal.
As Canada moves toward facilitating death for serious mental illness, we have to wonder whether racial or socioeconomic factors will play a role. Might those who are poor, who have less access to expensive treatment options and social support, be more likely to request facilitated death? And how do we determine whether patients with serious mental illness are competent to make such a decision or whether it is mental illness that is driving their perception of a future without hope?
As psychiatrists, we often struggle to help our patients overcome the stigma associated with treatments for mental illness. Still, patients often refuse potentially helpful treatments because they worry about the consequences of getting care. These include career repercussions and the disapproval of others. When this legislation is finally passed, will our Canadian colleagues offer it as an option when their patient refuses lithium or antipsychotics, inpatient care, or ECT?
Susan Kalish, MD, is a geriatric and palliative care physician in Boston who favors the availability of facilitated death. She practices in a state where this option is not available.
She told me that she is “in favor of expanding acceptance of, and access to, medical aid in dying for patients who choose to exercise autonomy over their dying process, for those who remain with irremediable suffering, despite provision of optimal palliative care.” However, she added, some countries have lowered the threshold “way too far.”
She noted, “It is complicated and harmful to the general issue of medical aid in dying.”
As psychiatrists, do we offer hope to our most vulnerable patients, or do we offer death? Do we rail against suicide, or do we facilitate it? Do we risk facilitating a patient’s demise when other options are unavailable because of a lack of access to treatment or when social and financial struggles exacerbate a person’s hopelessness? Should we worry that psychiatric euthanasia will turn into a form of eugenics where those who can’t contribute are made to feel that they should bow out? If we, as psychiatrists, aren’t the emissaries of hope, who exactly are we?
Dr. Miller is a coauthor of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University Press, 2016). She has a private practice and is an assistant professor of psychiatry and behavioral sciences at Johns Hopkins University, Baltimore. She disclosed no relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
I remember what it was like to be a medical student at a well-known cancer hospital where patients were dying of cancer. In life’s final stages, it was not uncommon for physicians to increase the dose of morphine; it alleviated pain, eased labored breathing, and yes, probably hastened the inevitable for patients who were in their final hours. In these scenarios, no one considered this euthanasia, and no one questioned whether it was the right thing to do.
Fast-forward to 2023 when the act of a physician hastening a patient’s death has become a controversial topic as criteria have expanded. Like all such topics in our polarized society, people aligned on sides, politics and religion rush to the head of the room, legislation is proposed, and words take on new meanings. If you’re in favor of legalization of clinician assistance in a patient’s death, the term is “medical assistance in dying”. If you’re opposed, the term is the more graphic physician-assisted suicide.
The scenario is entirely different from what I saw in my medical school rotations decades ago. It’s no longer an issue of easing the pain and discomfort of patients’ final hours; the question now is whether, faced with a potentially terminal or progressively debilitating physical illness, a patient has the right to determine when, and how, their life will end, and the medical profession is given a role in this.
In many places the bar has been further lowered to incorporate nonterminal conditions, and Belgium and the Netherlands now allow physician-facilitated suicide for psychiatric conditions, a practice that many find reprehensible. In these countries, patients may be provided with medications to ingest, but psychiatrists also administer lethal injections.
While Belgium and the Netherlands were the first countries to legalize physician-facilitated death, it could be argued that Canada has embraced it with the most gusto; physician-assisted suicide has been legal there since 2016.
Canada already has the largest number of physician-assisted deaths of any nation, with 10,064 in 2021 – an increase of 32% from 2020. The Canadian federal government is currently considering adding serious mental illness as an eligible category. If this law passes, the country will have the most liberal assisted-death policy in the world. The Canadian government planned to make serious mental illness an eligible category in March 2023, but in an eleventh-hour announcement, it deferred its decision until March 2024.
In a press release, the government said that the 1-year extension would “provide additional time to prepare for the safe and consistent assessment and provision of MAID in all cases, including where the person’s sole underlying medical condition is a mental illness. It will also allow time for the Government of Canada to fully consider the final report of the Special Joint Committee on MAID, tabled in Parliament on Feb. 15, 2023.”
As a psychiatrist who treats patients with treatment-refractory conditions, I have watched people undergo trial after trial of medications while having psychotherapy, and sometimes transcranial magnetic stimulation or electroconvulsive therapy (ECT). The thing that is sustaining for patients is the hope that they will get better and go on to find meaning and purpose in life, even if it is not in the form they once envisioned.
Where is the line, one wonders, when the patient has not responded to two medications or 12? Must they have ECT before we consider helping them end their lives? Do we try for 6 months or 6 years? What about new research pointing to better medications or psychedelics that are not yet available? According to Canada’s proposed legislation, the patient must be aware that treatment options exist, including facilitated suicide.
Physician-assisted suicide for psychiatric conditions creates a conundrum for psychiatrists. As mental health professionals, we work to prevent suicide and view it as an act that is frequently fueled by depression. Those who are determined to die by their own hand often do. Depression distorts cognition and leads many patients to believe that they would be better off dead and that their loved ones would be better off without them.
These cognitive distortions are part of their illness. So, how do we, as psychiatrists, move from a stance of preventing suicide – using measures such as involuntary treatment when necessary – to being the people who offer and facilitate death for our patients? I’ll leave this for my Canadian colleagues to contemplate, as I live in a state where assisted suicide for any condition remains illegal.
As Canada moves toward facilitating death for serious mental illness, we have to wonder whether racial or socioeconomic factors will play a role. Might those who are poor, who have less access to expensive treatment options and social support, be more likely to request facilitated death? And how do we determine whether patients with serious mental illness are competent to make such a decision or whether it is mental illness that is driving their perception of a future without hope?
As psychiatrists, we often struggle to help our patients overcome the stigma associated with treatments for mental illness. Still, patients often refuse potentially helpful treatments because they worry about the consequences of getting care. These include career repercussions and the disapproval of others. When this legislation is finally passed, will our Canadian colleagues offer it as an option when their patient refuses lithium or antipsychotics, inpatient care, or ECT?
Susan Kalish, MD, is a geriatric and palliative care physician in Boston who favors the availability of facilitated death. She practices in a state where this option is not available.
She told me that she is “in favor of expanding acceptance of, and access to, medical aid in dying for patients who choose to exercise autonomy over their dying process, for those who remain with irremediable suffering, despite provision of optimal palliative care.” However, she added, some countries have lowered the threshold “way too far.”
She noted, “It is complicated and harmful to the general issue of medical aid in dying.”
As psychiatrists, do we offer hope to our most vulnerable patients, or do we offer death? Do we rail against suicide, or do we facilitate it? Do we risk facilitating a patient’s demise when other options are unavailable because of a lack of access to treatment or when social and financial struggles exacerbate a person’s hopelessness? Should we worry that psychiatric euthanasia will turn into a form of eugenics where those who can’t contribute are made to feel that they should bow out? If we, as psychiatrists, aren’t the emissaries of hope, who exactly are we?
Dr. Miller is a coauthor of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University Press, 2016). She has a private practice and is an assistant professor of psychiatry and behavioral sciences at Johns Hopkins University, Baltimore. She disclosed no relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
I remember what it was like to be a medical student at a well-known cancer hospital where patients were dying of cancer. In life’s final stages, it was not uncommon for physicians to increase the dose of morphine; it alleviated pain, eased labored breathing, and yes, probably hastened the inevitable for patients who were in their final hours. In these scenarios, no one considered this euthanasia, and no one questioned whether it was the right thing to do.
Fast-forward to 2023 when the act of a physician hastening a patient’s death has become a controversial topic as criteria have expanded. Like all such topics in our polarized society, people aligned on sides, politics and religion rush to the head of the room, legislation is proposed, and words take on new meanings. If you’re in favor of legalization of clinician assistance in a patient’s death, the term is “medical assistance in dying”. If you’re opposed, the term is the more graphic physician-assisted suicide.
The scenario is entirely different from what I saw in my medical school rotations decades ago. It’s no longer an issue of easing the pain and discomfort of patients’ final hours; the question now is whether, faced with a potentially terminal or progressively debilitating physical illness, a patient has the right to determine when, and how, their life will end, and the medical profession is given a role in this.
In many places the bar has been further lowered to incorporate nonterminal conditions, and Belgium and the Netherlands now allow physician-facilitated suicide for psychiatric conditions, a practice that many find reprehensible. In these countries, patients may be provided with medications to ingest, but psychiatrists also administer lethal injections.
While Belgium and the Netherlands were the first countries to legalize physician-facilitated death, it could be argued that Canada has embraced it with the most gusto; physician-assisted suicide has been legal there since 2016.
Canada already has the largest number of physician-assisted deaths of any nation, with 10,064 in 2021 – an increase of 32% from 2020. The Canadian federal government is currently considering adding serious mental illness as an eligible category. If this law passes, the country will have the most liberal assisted-death policy in the world. The Canadian government planned to make serious mental illness an eligible category in March 2023, but in an eleventh-hour announcement, it deferred its decision until March 2024.
In a press release, the government said that the 1-year extension would “provide additional time to prepare for the safe and consistent assessment and provision of MAID in all cases, including where the person’s sole underlying medical condition is a mental illness. It will also allow time for the Government of Canada to fully consider the final report of the Special Joint Committee on MAID, tabled in Parliament on Feb. 15, 2023.”
As a psychiatrist who treats patients with treatment-refractory conditions, I have watched people undergo trial after trial of medications while having psychotherapy, and sometimes transcranial magnetic stimulation or electroconvulsive therapy (ECT). The thing that is sustaining for patients is the hope that they will get better and go on to find meaning and purpose in life, even if it is not in the form they once envisioned.
Where is the line, one wonders, when the patient has not responded to two medications or 12? Must they have ECT before we consider helping them end their lives? Do we try for 6 months or 6 years? What about new research pointing to better medications or psychedelics that are not yet available? According to Canada’s proposed legislation, the patient must be aware that treatment options exist, including facilitated suicide.
Physician-assisted suicide for psychiatric conditions creates a conundrum for psychiatrists. As mental health professionals, we work to prevent suicide and view it as an act that is frequently fueled by depression. Those who are determined to die by their own hand often do. Depression distorts cognition and leads many patients to believe that they would be better off dead and that their loved ones would be better off without them.
These cognitive distortions are part of their illness. So, how do we, as psychiatrists, move from a stance of preventing suicide – using measures such as involuntary treatment when necessary – to being the people who offer and facilitate death for our patients? I’ll leave this for my Canadian colleagues to contemplate, as I live in a state where assisted suicide for any condition remains illegal.
As Canada moves toward facilitating death for serious mental illness, we have to wonder whether racial or socioeconomic factors will play a role. Might those who are poor, who have less access to expensive treatment options and social support, be more likely to request facilitated death? And how do we determine whether patients with serious mental illness are competent to make such a decision or whether it is mental illness that is driving their perception of a future without hope?
As psychiatrists, we often struggle to help our patients overcome the stigma associated with treatments for mental illness. Still, patients often refuse potentially helpful treatments because they worry about the consequences of getting care. These include career repercussions and the disapproval of others. When this legislation is finally passed, will our Canadian colleagues offer it as an option when their patient refuses lithium or antipsychotics, inpatient care, or ECT?
Susan Kalish, MD, is a geriatric and palliative care physician in Boston who favors the availability of facilitated death. She practices in a state where this option is not available.
She told me that she is “in favor of expanding acceptance of, and access to, medical aid in dying for patients who choose to exercise autonomy over their dying process, for those who remain with irremediable suffering, despite provision of optimal palliative care.” However, she added, some countries have lowered the threshold “way too far.”
She noted, “It is complicated and harmful to the general issue of medical aid in dying.”
As psychiatrists, do we offer hope to our most vulnerable patients, or do we offer death? Do we rail against suicide, or do we facilitate it? Do we risk facilitating a patient’s demise when other options are unavailable because of a lack of access to treatment or when social and financial struggles exacerbate a person’s hopelessness? Should we worry that psychiatric euthanasia will turn into a form of eugenics where those who can’t contribute are made to feel that they should bow out? If we, as psychiatrists, aren’t the emissaries of hope, who exactly are we?
Dr. Miller is a coauthor of “Committed: The Battle Over Involuntary Psychiatric Care” (Baltimore: Johns Hopkins University Press, 2016). She has a private practice and is an assistant professor of psychiatry and behavioral sciences at Johns Hopkins University, Baltimore. She disclosed no relevant conflicts of interest.
A version of this article first appeared on Medscape.com.
Death anxiety in psychiatry and society: Facing our fears and embracing life
Our fear of death is exposed often in medicine. It is not uncommon to hear the last moments of a patient’s life described as a series of futile, sterile medical interventions that attempt to prolong that life in quasi-sadistic fashion. So much effort is placed in making sure that “everything necessary” is tried that less emphasis is made on providing a comfortable death.
It seems obvious that a profession dedicated to prolonging health would have difficulty confronting death. But it should also be natural for psychiatry to be the specialty able to integrate this discomfort within the medical psyche.
Yet, in training, we have noted much more time spent on the assessment of capacity in patients in order to refuse medical intervention than on time spent educating about the importance to die at the right time, as suggested by Friedrich Nietzsche.1 A psychiatry resident may graduate knowing dozens of questions to assess the ability of a family member to consider the risk, benefits, and alternatives of continued intubation in a comatose patient, but may feel very ill-equipped in discussing the meaning of a rightful life and a rightful death.
Death anxiety can also come outside the context of not having endured enough traumas or successes in one’s life, or not having lived life right. As poignantly described by Dostoevsky in his 1864 novella, “Notes from the Underground,” death anxiety can manifest as a result of the deterministic nature of life.2 Doing everything which is expected of us can feel like a betrayal of our one chance to have lived life authentically. This concept is also particularly familiar to physicians, who may have – in part – chosen their career path in response to a recommendation from their parents, rather than a more authentic feeling. Dostoevsky goads us to transgress, to act in a rebellious way, to truly feel alive. This can serve as a solution for death anxiety – if you are scared to die then live, live your fullest. Even if that means doing the unexpected or changing your path.
The fear of being forgotten after death can also drive many to pursue a legacy. Even a parent choosing to have children and teaching them values and belief systems is a way of leaving behind a mark on the world. For some, finding ways for being remembered after death – whether through fame, fortune, or having children, is a way of dealing with death anxiety.
The Mexican holiday “Dia de los Muertos,” or Day of the Dead, and the Japanese holiday “Obon” are examples from cultures where deceased ancestors are celebrated through rituals and offerings. Such cultures may relieve the anxiety of death by suggesting that one’s descendants will still care for the departed, and their legacy may remain.
Coping with death anxiety
For others, the road to recovery from death anxiety may take a completely different approach. Some may find comfort in the position that, to extinguish death anxiety, one should not live to the fullest but accept the tragic and mostly inconsequential aspects of life. The philosophical movement of “absurdism” addresses this perspective.
In our modern world, where we are so deeply attached to finding the cause and reason for things, absurdism reminds us that most of our lives and world do not have to make sense. While Albert Camus, arguably the most famous of the absurdist philosophers, encourages us to create meaning and transcend the tragedy and randomness of life,3 some patients can also find comfort in the idea that life is absurd, and thus one should not judge one’s own life and not fear own’s inevitable death.
Death anxiety can also be therapeutic. Especially in the existential tradition, one can enlist the fear of death for motivation. Many patients come to see us with a lack of motivation or drive. They feel paralyzed by their predicament and mental illness. As in the experiments of Martin Seligman, PhD, who shocked animals at random, a human exposed to repeated failure and abuse can get a sense of learned helplessness.4 Such patients can be very hard to reach, yet ultimately their despondence is no match for the reality that life will end. Reminding a patient that any day spent not feeling alive might as well be a metaphor for death is a challenging interpretation, but one that can lead to significant growth.
When considering the fear of death, psychiatry has generally taken the position that it is pathological, a form of anxiety. Psychiatry argues that one should strive to find fulfillment and joy in life. It thus may be a surprise to find that this is not a universally shared perspective.
In his 2010 book, author Thomas Ligotti argues on behalf of pessimistic and antinatalist views.5 Throughout the book he emphasizes the suffering that life can offer and argues against the endless pursuit of more life. To some psychiatrists, such arguments will be understood as insulting to our profession. Some may even interpret his texts as an argument in favor of ending one’s life.
However, psychiatrists must ask themselves “what are my answers to those arguments?” Mr. Ligotti’s book is a series of arguments against the idea that life will be pleasurable. Understanding those arguments and formulating a rebuttal would be an important process for any mental health provider. It is foolish to think that our patients do not have a rich and complicated relationship to death, and that none of our patients find death attractive in some ways. After all, accepting our fears as an important part of our body is a natural coping skill, which can also be taught.6
Part of the difficulty in discussing death and the fear of death may come from society’s resistance at having complicated conversations. It is not uncommon, currently, to include trigger warnings at the mention of discussions about death, even abstract ones. While we appreciate and encourage the articulation of feelings that a discussion about death may raise, we worry that such trigger warnings may be a form of censure that only makes society more resistant to talk about those important topics.
For another example of the avoidance of discussions about death, recall the “death panel” debates of 2009.7 When the U.S. government considered encouraging physicians to have discussions with their patients about end-of-life care, politicians and pundits decried that such discussions were “death panels,” and claimed they were an encouragement to patients to “cut [their] life short.” Such public projection of one’s anxiety about death has made it particularly difficult for psychiatry to make meaningful progress.
Acknowledging and addressing the fear
Death anxiety is such a common aspect of human life that most religions make some effort to address this fear. Many do so by offering a form of afterlife, often one described in idyllic fashion without anxiety.
Heaven, if one believes in it, is appealing for the person dreading death anxiety. Heaven is often described as being offered to those who have lived a rightful life, thus relieving the anxiety regarding the decisions one has made. Reincarnation can also be interpreted as another way of calming death anxiety, by promising a continual repetition of chances at getting life right. However, for many patients, religion doesn’t have the appeal that it once had.
Ultimately, the fear of death is a complex and multifaceted issue that can manifest in various ways. The medical profession, especially psychiatry, has a responsibility to address this fear in patients, but it also struggles with its own discomfort with the topic. The importance of providing a comfortable death is often overshadowed by the emphasis on prolonging life, which may manifest as a series of futile medical interventions.
The fear of death can be therapeutic and motivating, but it can also be pathological and lead to a lack of motivation or drive. The philosophical movements of absurdism and antinatalism offer alternative perspectives on death and life, and it is important for mental health providers to understand and engage with these views.
Yet acknowledging and addressing the fear of death is an important aspect of mental health care and a crucial part of the human experience.
Dr. Akkoor is a psychiatry resident at the University of California, San Diego. She is interested in immigrant mental health, ethics, consultation-liaison psychiatry, and medical education. Dr. Badre is a clinical and forensic psychiatrist in San Diego. He holds teaching positions at the University of California, San Diego, and the University of San Diego. He teaches medical education, psychopharmacology, ethics in psychiatry, and correctional care. Dr. Badre can be reached at his website, BadreMD.com. Dr. Badre and Dr. Akkoor have no conflicts of interest.
References
1. Nietzsche F. Thus Spoke Zarathustra. 1883-1892.
2. Dostoevsky F. Notes from the Underground. 1864.
3. Camus A. The Plague. 1947.
4. Seligman M. Helplessness: On depression, development, and death. 1975.
5. Ligotti T. The Conspiracy Against the Human Race. 2010.
6. Hayes SC. Behav Ther. 2016 Nov;47(6):869-85. doi: 10.1016/j.beth.2016.11.006.
7. Nyhan B. The Forum. 2010 April 27;8(1). doi: 10.2202/1540-8884.1354.
Our fear of death is exposed often in medicine. It is not uncommon to hear the last moments of a patient’s life described as a series of futile, sterile medical interventions that attempt to prolong that life in quasi-sadistic fashion. So much effort is placed in making sure that “everything necessary” is tried that less emphasis is made on providing a comfortable death.
It seems obvious that a profession dedicated to prolonging health would have difficulty confronting death. But it should also be natural for psychiatry to be the specialty able to integrate this discomfort within the medical psyche.
Yet, in training, we have noted much more time spent on the assessment of capacity in patients in order to refuse medical intervention than on time spent educating about the importance to die at the right time, as suggested by Friedrich Nietzsche.1 A psychiatry resident may graduate knowing dozens of questions to assess the ability of a family member to consider the risk, benefits, and alternatives of continued intubation in a comatose patient, but may feel very ill-equipped in discussing the meaning of a rightful life and a rightful death.
Death anxiety can also come outside the context of not having endured enough traumas or successes in one’s life, or not having lived life right. As poignantly described by Dostoevsky in his 1864 novella, “Notes from the Underground,” death anxiety can manifest as a result of the deterministic nature of life.2 Doing everything which is expected of us can feel like a betrayal of our one chance to have lived life authentically. This concept is also particularly familiar to physicians, who may have – in part – chosen their career path in response to a recommendation from their parents, rather than a more authentic feeling. Dostoevsky goads us to transgress, to act in a rebellious way, to truly feel alive. This can serve as a solution for death anxiety – if you are scared to die then live, live your fullest. Even if that means doing the unexpected or changing your path.
The fear of being forgotten after death can also drive many to pursue a legacy. Even a parent choosing to have children and teaching them values and belief systems is a way of leaving behind a mark on the world. For some, finding ways for being remembered after death – whether through fame, fortune, or having children, is a way of dealing with death anxiety.
The Mexican holiday “Dia de los Muertos,” or Day of the Dead, and the Japanese holiday “Obon” are examples from cultures where deceased ancestors are celebrated through rituals and offerings. Such cultures may relieve the anxiety of death by suggesting that one’s descendants will still care for the departed, and their legacy may remain.
Coping with death anxiety
For others, the road to recovery from death anxiety may take a completely different approach. Some may find comfort in the position that, to extinguish death anxiety, one should not live to the fullest but accept the tragic and mostly inconsequential aspects of life. The philosophical movement of “absurdism” addresses this perspective.
In our modern world, where we are so deeply attached to finding the cause and reason for things, absurdism reminds us that most of our lives and world do not have to make sense. While Albert Camus, arguably the most famous of the absurdist philosophers, encourages us to create meaning and transcend the tragedy and randomness of life,3 some patients can also find comfort in the idea that life is absurd, and thus one should not judge one’s own life and not fear own’s inevitable death.
Death anxiety can also be therapeutic. Especially in the existential tradition, one can enlist the fear of death for motivation. Many patients come to see us with a lack of motivation or drive. They feel paralyzed by their predicament and mental illness. As in the experiments of Martin Seligman, PhD, who shocked animals at random, a human exposed to repeated failure and abuse can get a sense of learned helplessness.4 Such patients can be very hard to reach, yet ultimately their despondence is no match for the reality that life will end. Reminding a patient that any day spent not feeling alive might as well be a metaphor for death is a challenging interpretation, but one that can lead to significant growth.
When considering the fear of death, psychiatry has generally taken the position that it is pathological, a form of anxiety. Psychiatry argues that one should strive to find fulfillment and joy in life. It thus may be a surprise to find that this is not a universally shared perspective.
In his 2010 book, author Thomas Ligotti argues on behalf of pessimistic and antinatalist views.5 Throughout the book he emphasizes the suffering that life can offer and argues against the endless pursuit of more life. To some psychiatrists, such arguments will be understood as insulting to our profession. Some may even interpret his texts as an argument in favor of ending one’s life.
However, psychiatrists must ask themselves “what are my answers to those arguments?” Mr. Ligotti’s book is a series of arguments against the idea that life will be pleasurable. Understanding those arguments and formulating a rebuttal would be an important process for any mental health provider. It is foolish to think that our patients do not have a rich and complicated relationship to death, and that none of our patients find death attractive in some ways. After all, accepting our fears as an important part of our body is a natural coping skill, which can also be taught.6
Part of the difficulty in discussing death and the fear of death may come from society’s resistance at having complicated conversations. It is not uncommon, currently, to include trigger warnings at the mention of discussions about death, even abstract ones. While we appreciate and encourage the articulation of feelings that a discussion about death may raise, we worry that such trigger warnings may be a form of censure that only makes society more resistant to talk about those important topics.
For another example of the avoidance of discussions about death, recall the “death panel” debates of 2009.7 When the U.S. government considered encouraging physicians to have discussions with their patients about end-of-life care, politicians and pundits decried that such discussions were “death panels,” and claimed they were an encouragement to patients to “cut [their] life short.” Such public projection of one’s anxiety about death has made it particularly difficult for psychiatry to make meaningful progress.
Acknowledging and addressing the fear
Death anxiety is such a common aspect of human life that most religions make some effort to address this fear. Many do so by offering a form of afterlife, often one described in idyllic fashion without anxiety.
Heaven, if one believes in it, is appealing for the person dreading death anxiety. Heaven is often described as being offered to those who have lived a rightful life, thus relieving the anxiety regarding the decisions one has made. Reincarnation can also be interpreted as another way of calming death anxiety, by promising a continual repetition of chances at getting life right. However, for many patients, religion doesn’t have the appeal that it once had.
Ultimately, the fear of death is a complex and multifaceted issue that can manifest in various ways. The medical profession, especially psychiatry, has a responsibility to address this fear in patients, but it also struggles with its own discomfort with the topic. The importance of providing a comfortable death is often overshadowed by the emphasis on prolonging life, which may manifest as a series of futile medical interventions.
The fear of death can be therapeutic and motivating, but it can also be pathological and lead to a lack of motivation or drive. The philosophical movements of absurdism and antinatalism offer alternative perspectives on death and life, and it is important for mental health providers to understand and engage with these views.
Yet acknowledging and addressing the fear of death is an important aspect of mental health care and a crucial part of the human experience.
Dr. Akkoor is a psychiatry resident at the University of California, San Diego. She is interested in immigrant mental health, ethics, consultation-liaison psychiatry, and medical education. Dr. Badre is a clinical and forensic psychiatrist in San Diego. He holds teaching positions at the University of California, San Diego, and the University of San Diego. He teaches medical education, psychopharmacology, ethics in psychiatry, and correctional care. Dr. Badre can be reached at his website, BadreMD.com. Dr. Badre and Dr. Akkoor have no conflicts of interest.
References
1. Nietzsche F. Thus Spoke Zarathustra. 1883-1892.
2. Dostoevsky F. Notes from the Underground. 1864.
3. Camus A. The Plague. 1947.
4. Seligman M. Helplessness: On depression, development, and death. 1975.
5. Ligotti T. The Conspiracy Against the Human Race. 2010.
6. Hayes SC. Behav Ther. 2016 Nov;47(6):869-85. doi: 10.1016/j.beth.2016.11.006.
7. Nyhan B. The Forum. 2010 April 27;8(1). doi: 10.2202/1540-8884.1354.
Our fear of death is exposed often in medicine. It is not uncommon to hear the last moments of a patient’s life described as a series of futile, sterile medical interventions that attempt to prolong that life in quasi-sadistic fashion. So much effort is placed in making sure that “everything necessary” is tried that less emphasis is made on providing a comfortable death.
It seems obvious that a profession dedicated to prolonging health would have difficulty confronting death. But it should also be natural for psychiatry to be the specialty able to integrate this discomfort within the medical psyche.
Yet, in training, we have noted much more time spent on the assessment of capacity in patients in order to refuse medical intervention than on time spent educating about the importance to die at the right time, as suggested by Friedrich Nietzsche.1 A psychiatry resident may graduate knowing dozens of questions to assess the ability of a family member to consider the risk, benefits, and alternatives of continued intubation in a comatose patient, but may feel very ill-equipped in discussing the meaning of a rightful life and a rightful death.
Death anxiety can also come outside the context of not having endured enough traumas or successes in one’s life, or not having lived life right. As poignantly described by Dostoevsky in his 1864 novella, “Notes from the Underground,” death anxiety can manifest as a result of the deterministic nature of life.2 Doing everything which is expected of us can feel like a betrayal of our one chance to have lived life authentically. This concept is also particularly familiar to physicians, who may have – in part – chosen their career path in response to a recommendation from their parents, rather than a more authentic feeling. Dostoevsky goads us to transgress, to act in a rebellious way, to truly feel alive. This can serve as a solution for death anxiety – if you are scared to die then live, live your fullest. Even if that means doing the unexpected or changing your path.
The fear of being forgotten after death can also drive many to pursue a legacy. Even a parent choosing to have children and teaching them values and belief systems is a way of leaving behind a mark on the world. For some, finding ways for being remembered after death – whether through fame, fortune, or having children, is a way of dealing with death anxiety.
The Mexican holiday “Dia de los Muertos,” or Day of the Dead, and the Japanese holiday “Obon” are examples from cultures where deceased ancestors are celebrated through rituals and offerings. Such cultures may relieve the anxiety of death by suggesting that one’s descendants will still care for the departed, and their legacy may remain.
Coping with death anxiety
For others, the road to recovery from death anxiety may take a completely different approach. Some may find comfort in the position that, to extinguish death anxiety, one should not live to the fullest but accept the tragic and mostly inconsequential aspects of life. The philosophical movement of “absurdism” addresses this perspective.
In our modern world, where we are so deeply attached to finding the cause and reason for things, absurdism reminds us that most of our lives and world do not have to make sense. While Albert Camus, arguably the most famous of the absurdist philosophers, encourages us to create meaning and transcend the tragedy and randomness of life,3 some patients can also find comfort in the idea that life is absurd, and thus one should not judge one’s own life and not fear own’s inevitable death.
Death anxiety can also be therapeutic. Especially in the existential tradition, one can enlist the fear of death for motivation. Many patients come to see us with a lack of motivation or drive. They feel paralyzed by their predicament and mental illness. As in the experiments of Martin Seligman, PhD, who shocked animals at random, a human exposed to repeated failure and abuse can get a sense of learned helplessness.4 Such patients can be very hard to reach, yet ultimately their despondence is no match for the reality that life will end. Reminding a patient that any day spent not feeling alive might as well be a metaphor for death is a challenging interpretation, but one that can lead to significant growth.
When considering the fear of death, psychiatry has generally taken the position that it is pathological, a form of anxiety. Psychiatry argues that one should strive to find fulfillment and joy in life. It thus may be a surprise to find that this is not a universally shared perspective.
In his 2010 book, author Thomas Ligotti argues on behalf of pessimistic and antinatalist views.5 Throughout the book he emphasizes the suffering that life can offer and argues against the endless pursuit of more life. To some psychiatrists, such arguments will be understood as insulting to our profession. Some may even interpret his texts as an argument in favor of ending one’s life.
However, psychiatrists must ask themselves “what are my answers to those arguments?” Mr. Ligotti’s book is a series of arguments against the idea that life will be pleasurable. Understanding those arguments and formulating a rebuttal would be an important process for any mental health provider. It is foolish to think that our patients do not have a rich and complicated relationship to death, and that none of our patients find death attractive in some ways. After all, accepting our fears as an important part of our body is a natural coping skill, which can also be taught.6
Part of the difficulty in discussing death and the fear of death may come from society’s resistance at having complicated conversations. It is not uncommon, currently, to include trigger warnings at the mention of discussions about death, even abstract ones. While we appreciate and encourage the articulation of feelings that a discussion about death may raise, we worry that such trigger warnings may be a form of censure that only makes society more resistant to talk about those important topics.
For another example of the avoidance of discussions about death, recall the “death panel” debates of 2009.7 When the U.S. government considered encouraging physicians to have discussions with their patients about end-of-life care, politicians and pundits decried that such discussions were “death panels,” and claimed they were an encouragement to patients to “cut [their] life short.” Such public projection of one’s anxiety about death has made it particularly difficult for psychiatry to make meaningful progress.
Acknowledging and addressing the fear
Death anxiety is such a common aspect of human life that most religions make some effort to address this fear. Many do so by offering a form of afterlife, often one described in idyllic fashion without anxiety.
Heaven, if one believes in it, is appealing for the person dreading death anxiety. Heaven is often described as being offered to those who have lived a rightful life, thus relieving the anxiety regarding the decisions one has made. Reincarnation can also be interpreted as another way of calming death anxiety, by promising a continual repetition of chances at getting life right. However, for many patients, religion doesn’t have the appeal that it once had.
Ultimately, the fear of death is a complex and multifaceted issue that can manifest in various ways. The medical profession, especially psychiatry, has a responsibility to address this fear in patients, but it also struggles with its own discomfort with the topic. The importance of providing a comfortable death is often overshadowed by the emphasis on prolonging life, which may manifest as a series of futile medical interventions.
The fear of death can be therapeutic and motivating, but it can also be pathological and lead to a lack of motivation or drive. The philosophical movements of absurdism and antinatalism offer alternative perspectives on death and life, and it is important for mental health providers to understand and engage with these views.
Yet acknowledging and addressing the fear of death is an important aspect of mental health care and a crucial part of the human experience.
Dr. Akkoor is a psychiatry resident at the University of California, San Diego. She is interested in immigrant mental health, ethics, consultation-liaison psychiatry, and medical education. Dr. Badre is a clinical and forensic psychiatrist in San Diego. He holds teaching positions at the University of California, San Diego, and the University of San Diego. He teaches medical education, psychopharmacology, ethics in psychiatry, and correctional care. Dr. Badre can be reached at his website, BadreMD.com. Dr. Badre and Dr. Akkoor have no conflicts of interest.
References
1. Nietzsche F. Thus Spoke Zarathustra. 1883-1892.
2. Dostoevsky F. Notes from the Underground. 1864.
3. Camus A. The Plague. 1947.
4. Seligman M. Helplessness: On depression, development, and death. 1975.
5. Ligotti T. The Conspiracy Against the Human Race. 2010.
6. Hayes SC. Behav Ther. 2016 Nov;47(6):869-85. doi: 10.1016/j.beth.2016.11.006.
7. Nyhan B. The Forum. 2010 April 27;8(1). doi: 10.2202/1540-8884.1354.
In-office infusions at risk with new Medicare Part B reimbursement recommendation
The Medicare Payment Advisory Commission (MedPAC) is an independent agency to advise Congress on Medicare (MC) policy, much of which pertains to payment issues. The 17 commissioners meet publicly and issue two reports a year with their recommendations to Congress, who then decides whether to enact these recommendations or not.
One MedPAC recommendation in 2023 was quickly introduced in the House of Representatives in May and passed the Energy and Commerce Committee 49-0. That recommendation relates to “site neutrality” payments to MC providers. If passed by Congress, it would result in some “site-neutral” cuts to hospitals. That MedPAC recommendation was acted upon very quickly by Congress. Consequently, it is important to discuss the potential negative ramifications of other MedPAC recommendations released in June regarding reimbursement of Medicare Part B drugs and proactively educate Congress accordingly on those ramifications.
Medicare Part B drugs
Medicare Part B drugs are those administered by providers, unlike the Part D medications which are generally obtained through pharmacies. Presently, MC reimburses providers for the administered Part B medication based on the average sales price (ASP) plus 6%. However, with sequestration, that add-on amount is reduced to ASP plus 4.3%. It has long been touted by MedPAC and other policy makers that physicians choose to infuse higher-priced drugs in order to increase reimbursements. That has not been borne out when it comes to rheumatologists, and, in fact, a retired MedPAC commissioner even stated that premise did not hold true for rheumatologists.
Regardless, it continues to be suggested that MC should reduce its costs for Part B medications by reducing reimbursement to physicians. It should be noted that often the margins on the drugs are already quite thin, and at times the reimbursement amount, compared with the acquisition cost of the drug even leaves the physician “underwater.”
A few years ago, there was a proposed Part B demonstration project that essentially removed the +6% add-on and replaced it with a very low fixed amount that would have left most physicians “underwater” in their Part B drug acquisitions. This was vigorously opposed by physicians around the country, who let Congress know exactly how they felt. We have been told that the Coalition of State Rheumatology Organizations was one of the most vociferous organizations that helped in fighting back this proposal and resulting in its withdrawal.
MedPAC recommendations
That brings us back to MedPAC. In June, MedPAC released recommendations to Congress in an attempt to address the “high price of drugs” covered under MC Part B. Unfortunately, the recommendations do nothing to address the root cause of high drug prices, but once again attempt to balance MC expenditures on the backs of physicians. In this case, it is physicians who infuse Part B drugs in their office to chronically ill patients. In-office infusions have been shown to be the most cost-effective site of care, as well as being safer when compared with home infusion for a number of rheumatologic medications.
One of the MedPAC recommendations gives the Secretary of Health & Human Services the authority to establish a single ASP for drugs with “similar health effects.” The ambiguity of the phrase “similar health effects” should put us all on alert as to the significant unintended consequences that may result. For example, HHS could assign one ASP to all drugs that treat rheumatoid arthritis based on the lowest ASP of the group. This certainly would lead to a number of drugs being out of reach for MC beneficiaries if the artificial ASP of the medication is much lower than the actual acquisition cost of the drug, leaving physicians unable to acquire it. Yet, MedPAC states this recommendation would not affect access to care for MC beneficiaries.
Another recommendation would require HHS to reduce or eliminate the add-on percentage to the ASP for higher-priced drugs and/or put in an added fixed amount. This recommendation is clearly reminiscent of the old ill-conceived Part B demonstration project.
A fixed “add-on amount” might work if it is sufficient to cover the overhead of maintaining a provider’s infusion suite. But if practices are left underwater in their purchases of certain Part B drugs, there may be no choice but to stop offering those infusions to MC beneficiaries or – worst-case scenario – shut the door completely. Yet again, MedPAC stated that this recommendation would not result in a loss of access to these treatments for MC beneficiaries.
Loss of access?
Rheumatologists have gone to great lengths to continue offering care to MC patients in spite of the yearly cuts and threats of more cuts in the future to physician reimbursements. In addition, physicians have no annual inflationary update to their reimbursements. I am not sure how MedPAC concludes that continued cuts to physician fee schedules, along with a decrease in reimbursement for administered drugs, will not affect access to care for MC beneficiaries.
Finally, the timing on these recommendations is confusing, considering that implementation of the Inflation Reduction Act (IRA) has just begun. Next quarter, a number of Part B drugs will be subject to inflationary penalties; there will also be additional Part B biosimilars coming to market, resulting in lower ASPs. And don’t forget, the IRA just instituted an ASP plus 8% reimbursement for biosimilars in an attempt to get physicians to do something that the Centers for Medicare & Medicaid Services has asked them not to do. That is, choose a drug based on its reimbursement, not necessarily the one which is right for the patient.
Overall, with so many variables up in the air, now is not the time to create even more uncertainty for physicians and the Medicare patients that they take care of.
Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is the CSRO’s Vice President of Advocacy and Government Affairs and its immediate Past President, as well as past chair of the Alliance for Safe Biologic Medicines and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].
The Medicare Payment Advisory Commission (MedPAC) is an independent agency to advise Congress on Medicare (MC) policy, much of which pertains to payment issues. The 17 commissioners meet publicly and issue two reports a year with their recommendations to Congress, who then decides whether to enact these recommendations or not.
One MedPAC recommendation in 2023 was quickly introduced in the House of Representatives in May and passed the Energy and Commerce Committee 49-0. That recommendation relates to “site neutrality” payments to MC providers. If passed by Congress, it would result in some “site-neutral” cuts to hospitals. That MedPAC recommendation was acted upon very quickly by Congress. Consequently, it is important to discuss the potential negative ramifications of other MedPAC recommendations released in June regarding reimbursement of Medicare Part B drugs and proactively educate Congress accordingly on those ramifications.
Medicare Part B drugs
Medicare Part B drugs are those administered by providers, unlike the Part D medications which are generally obtained through pharmacies. Presently, MC reimburses providers for the administered Part B medication based on the average sales price (ASP) plus 6%. However, with sequestration, that add-on amount is reduced to ASP plus 4.3%. It has long been touted by MedPAC and other policy makers that physicians choose to infuse higher-priced drugs in order to increase reimbursements. That has not been borne out when it comes to rheumatologists, and, in fact, a retired MedPAC commissioner even stated that premise did not hold true for rheumatologists.
Regardless, it continues to be suggested that MC should reduce its costs for Part B medications by reducing reimbursement to physicians. It should be noted that often the margins on the drugs are already quite thin, and at times the reimbursement amount, compared with the acquisition cost of the drug even leaves the physician “underwater.”
A few years ago, there was a proposed Part B demonstration project that essentially removed the +6% add-on and replaced it with a very low fixed amount that would have left most physicians “underwater” in their Part B drug acquisitions. This was vigorously opposed by physicians around the country, who let Congress know exactly how they felt. We have been told that the Coalition of State Rheumatology Organizations was one of the most vociferous organizations that helped in fighting back this proposal and resulting in its withdrawal.
MedPAC recommendations
That brings us back to MedPAC. In June, MedPAC released recommendations to Congress in an attempt to address the “high price of drugs” covered under MC Part B. Unfortunately, the recommendations do nothing to address the root cause of high drug prices, but once again attempt to balance MC expenditures on the backs of physicians. In this case, it is physicians who infuse Part B drugs in their office to chronically ill patients. In-office infusions have been shown to be the most cost-effective site of care, as well as being safer when compared with home infusion for a number of rheumatologic medications.
One of the MedPAC recommendations gives the Secretary of Health & Human Services the authority to establish a single ASP for drugs with “similar health effects.” The ambiguity of the phrase “similar health effects” should put us all on alert as to the significant unintended consequences that may result. For example, HHS could assign one ASP to all drugs that treat rheumatoid arthritis based on the lowest ASP of the group. This certainly would lead to a number of drugs being out of reach for MC beneficiaries if the artificial ASP of the medication is much lower than the actual acquisition cost of the drug, leaving physicians unable to acquire it. Yet, MedPAC states this recommendation would not affect access to care for MC beneficiaries.
Another recommendation would require HHS to reduce or eliminate the add-on percentage to the ASP for higher-priced drugs and/or put in an added fixed amount. This recommendation is clearly reminiscent of the old ill-conceived Part B demonstration project.
A fixed “add-on amount” might work if it is sufficient to cover the overhead of maintaining a provider’s infusion suite. But if practices are left underwater in their purchases of certain Part B drugs, there may be no choice but to stop offering those infusions to MC beneficiaries or – worst-case scenario – shut the door completely. Yet again, MedPAC stated that this recommendation would not result in a loss of access to these treatments for MC beneficiaries.
Loss of access?
Rheumatologists have gone to great lengths to continue offering care to MC patients in spite of the yearly cuts and threats of more cuts in the future to physician reimbursements. In addition, physicians have no annual inflationary update to their reimbursements. I am not sure how MedPAC concludes that continued cuts to physician fee schedules, along with a decrease in reimbursement for administered drugs, will not affect access to care for MC beneficiaries.
Finally, the timing on these recommendations is confusing, considering that implementation of the Inflation Reduction Act (IRA) has just begun. Next quarter, a number of Part B drugs will be subject to inflationary penalties; there will also be additional Part B biosimilars coming to market, resulting in lower ASPs. And don’t forget, the IRA just instituted an ASP plus 8% reimbursement for biosimilars in an attempt to get physicians to do something that the Centers for Medicare & Medicaid Services has asked them not to do. That is, choose a drug based on its reimbursement, not necessarily the one which is right for the patient.
Overall, with so many variables up in the air, now is not the time to create even more uncertainty for physicians and the Medicare patients that they take care of.
Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is the CSRO’s Vice President of Advocacy and Government Affairs and its immediate Past President, as well as past chair of the Alliance for Safe Biologic Medicines and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].
The Medicare Payment Advisory Commission (MedPAC) is an independent agency to advise Congress on Medicare (MC) policy, much of which pertains to payment issues. The 17 commissioners meet publicly and issue two reports a year with their recommendations to Congress, who then decides whether to enact these recommendations or not.
One MedPAC recommendation in 2023 was quickly introduced in the House of Representatives in May and passed the Energy and Commerce Committee 49-0. That recommendation relates to “site neutrality” payments to MC providers. If passed by Congress, it would result in some “site-neutral” cuts to hospitals. That MedPAC recommendation was acted upon very quickly by Congress. Consequently, it is important to discuss the potential negative ramifications of other MedPAC recommendations released in June regarding reimbursement of Medicare Part B drugs and proactively educate Congress accordingly on those ramifications.
Medicare Part B drugs
Medicare Part B drugs are those administered by providers, unlike the Part D medications which are generally obtained through pharmacies. Presently, MC reimburses providers for the administered Part B medication based on the average sales price (ASP) plus 6%. However, with sequestration, that add-on amount is reduced to ASP plus 4.3%. It has long been touted by MedPAC and other policy makers that physicians choose to infuse higher-priced drugs in order to increase reimbursements. That has not been borne out when it comes to rheumatologists, and, in fact, a retired MedPAC commissioner even stated that premise did not hold true for rheumatologists.
Regardless, it continues to be suggested that MC should reduce its costs for Part B medications by reducing reimbursement to physicians. It should be noted that often the margins on the drugs are already quite thin, and at times the reimbursement amount, compared with the acquisition cost of the drug even leaves the physician “underwater.”
A few years ago, there was a proposed Part B demonstration project that essentially removed the +6% add-on and replaced it with a very low fixed amount that would have left most physicians “underwater” in their Part B drug acquisitions. This was vigorously opposed by physicians around the country, who let Congress know exactly how they felt. We have been told that the Coalition of State Rheumatology Organizations was one of the most vociferous organizations that helped in fighting back this proposal and resulting in its withdrawal.
MedPAC recommendations
That brings us back to MedPAC. In June, MedPAC released recommendations to Congress in an attempt to address the “high price of drugs” covered under MC Part B. Unfortunately, the recommendations do nothing to address the root cause of high drug prices, but once again attempt to balance MC expenditures on the backs of physicians. In this case, it is physicians who infuse Part B drugs in their office to chronically ill patients. In-office infusions have been shown to be the most cost-effective site of care, as well as being safer when compared with home infusion for a number of rheumatologic medications.
One of the MedPAC recommendations gives the Secretary of Health & Human Services the authority to establish a single ASP for drugs with “similar health effects.” The ambiguity of the phrase “similar health effects” should put us all on alert as to the significant unintended consequences that may result. For example, HHS could assign one ASP to all drugs that treat rheumatoid arthritis based on the lowest ASP of the group. This certainly would lead to a number of drugs being out of reach for MC beneficiaries if the artificial ASP of the medication is much lower than the actual acquisition cost of the drug, leaving physicians unable to acquire it. Yet, MedPAC states this recommendation would not affect access to care for MC beneficiaries.
Another recommendation would require HHS to reduce or eliminate the add-on percentage to the ASP for higher-priced drugs and/or put in an added fixed amount. This recommendation is clearly reminiscent of the old ill-conceived Part B demonstration project.
A fixed “add-on amount” might work if it is sufficient to cover the overhead of maintaining a provider’s infusion suite. But if practices are left underwater in their purchases of certain Part B drugs, there may be no choice but to stop offering those infusions to MC beneficiaries or – worst-case scenario – shut the door completely. Yet again, MedPAC stated that this recommendation would not result in a loss of access to these treatments for MC beneficiaries.
Loss of access?
Rheumatologists have gone to great lengths to continue offering care to MC patients in spite of the yearly cuts and threats of more cuts in the future to physician reimbursements. In addition, physicians have no annual inflationary update to their reimbursements. I am not sure how MedPAC concludes that continued cuts to physician fee schedules, along with a decrease in reimbursement for administered drugs, will not affect access to care for MC beneficiaries.
Finally, the timing on these recommendations is confusing, considering that implementation of the Inflation Reduction Act (IRA) has just begun. Next quarter, a number of Part B drugs will be subject to inflationary penalties; there will also be additional Part B biosimilars coming to market, resulting in lower ASPs. And don’t forget, the IRA just instituted an ASP plus 8% reimbursement for biosimilars in an attempt to get physicians to do something that the Centers for Medicare & Medicaid Services has asked them not to do. That is, choose a drug based on its reimbursement, not necessarily the one which is right for the patient.
Overall, with so many variables up in the air, now is not the time to create even more uncertainty for physicians and the Medicare patients that they take care of.
Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is the CSRO’s Vice President of Advocacy and Government Affairs and its immediate Past President, as well as past chair of the Alliance for Safe Biologic Medicines and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].
Dangerous grandparents
Many decades ago I wrote a book I brazenly titled: “The Good Grandmother Handbook.” I had been a parent for a scant 7 or 8 years but based on my experiences in the office I felt I had accumulated enough wisdom to suggest to women in their fifth to seventh decades how they might conduct themselves around their grandchildren. Luckily, the book never got further than several hundred pages of crudely typed manuscript. This was before word processing programs had settled into the home computer industry, which was still in its infancy.
But I continue find the subject of grandparents interesting. Now, with grandchildren of my own (the oldest has just graduated from high school) and scores of peers knee deep in their own grandparenting adventures, I hope that my perspective now has a bit less of a holier-than-thou aroma.
My most recent muse-prodding event came when I stumbled across an article about the epidemiology of unintentional pediatric firearm fatalities. Looking at 10 years of data from the National Violent Death Reporting System, the investigators found that in 80% of the cases the firearm owner was a relative of the victim; in slightly more than 60% of the cases the event occurred in the victim’s home.
The data set was not granular enough to define the exact relationship between the child and relative who owned the gun. I suspect that most often the relative was a parent or an uncle or aunt. However, viewed through my septuagenarian prism, this paper prompted me to wonder in how many of these fatalities the firearm owner was a grandparent.
I have only anecdotal observations, but I can easily recall situations here in Maine in which a child has been injured by his or her grandfather’s gun. The data from the study show that pediatric fatalities are bimodal, with the majority occurring in the 1- to 5-year age group and a second peak in adolescence. The grandparent-involved cases I can recall were in the younger demographic.
Unfortunately, firearms aren’t the only threat that other grandparents and I pose to the health and safety of our grandchildren. I can remember before the development of, and the widespread use of, tamper-proof pill bottles, “grandma’s purse” overdoses were an unfortunately common occurrence.
More recently, at least here in Maine, we have been hearing more about motorized vehicle–related injuries and fatalities – grandparents backing over their grandchildren in the driveway or, more often, grandfathers (usually) taking their young grandchildren for rides on their snowmobiles, ATVs, lawn tractors, (fill in the blank). Whenever one of these events occurs, my mind quickly jumps beyond the tragic loss of life to imagining what terrible and long-lasting emotional chaos these incidents have spawned in those families.
During the pandemic, many parents and grandparents became aware of the threat that viral-spewing young children pose to the older and more vulnerable generation. On the other hand, many parents have been told that having a grandparent around can present a risk to the health and safety of their grandchildren. It can be a touchy subject in families, and grandparents may bristle at “being treated like a child” when they are reminded that children aren’t small adults and that their own behavior may be setting a bad example or putting their grandchildren at risk.
My generation had to learn how to buckle infants and toddlers into car seats because it was something that wasn’t done for our children. Fortunately, most new grandparents now already have those buckle-and-click skills and mindset. But,
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
Many decades ago I wrote a book I brazenly titled: “The Good Grandmother Handbook.” I had been a parent for a scant 7 or 8 years but based on my experiences in the office I felt I had accumulated enough wisdom to suggest to women in their fifth to seventh decades how they might conduct themselves around their grandchildren. Luckily, the book never got further than several hundred pages of crudely typed manuscript. This was before word processing programs had settled into the home computer industry, which was still in its infancy.
But I continue find the subject of grandparents interesting. Now, with grandchildren of my own (the oldest has just graduated from high school) and scores of peers knee deep in their own grandparenting adventures, I hope that my perspective now has a bit less of a holier-than-thou aroma.
My most recent muse-prodding event came when I stumbled across an article about the epidemiology of unintentional pediatric firearm fatalities. Looking at 10 years of data from the National Violent Death Reporting System, the investigators found that in 80% of the cases the firearm owner was a relative of the victim; in slightly more than 60% of the cases the event occurred in the victim’s home.
The data set was not granular enough to define the exact relationship between the child and relative who owned the gun. I suspect that most often the relative was a parent or an uncle or aunt. However, viewed through my septuagenarian prism, this paper prompted me to wonder in how many of these fatalities the firearm owner was a grandparent.
I have only anecdotal observations, but I can easily recall situations here in Maine in which a child has been injured by his or her grandfather’s gun. The data from the study show that pediatric fatalities are bimodal, with the majority occurring in the 1- to 5-year age group and a second peak in adolescence. The grandparent-involved cases I can recall were in the younger demographic.
Unfortunately, firearms aren’t the only threat that other grandparents and I pose to the health and safety of our grandchildren. I can remember before the development of, and the widespread use of, tamper-proof pill bottles, “grandma’s purse” overdoses were an unfortunately common occurrence.
More recently, at least here in Maine, we have been hearing more about motorized vehicle–related injuries and fatalities – grandparents backing over their grandchildren in the driveway or, more often, grandfathers (usually) taking their young grandchildren for rides on their snowmobiles, ATVs, lawn tractors, (fill in the blank). Whenever one of these events occurs, my mind quickly jumps beyond the tragic loss of life to imagining what terrible and long-lasting emotional chaos these incidents have spawned in those families.
During the pandemic, many parents and grandparents became aware of the threat that viral-spewing young children pose to the older and more vulnerable generation. On the other hand, many parents have been told that having a grandparent around can present a risk to the health and safety of their grandchildren. It can be a touchy subject in families, and grandparents may bristle at “being treated like a child” when they are reminded that children aren’t small adults and that their own behavior may be setting a bad example or putting their grandchildren at risk.
My generation had to learn how to buckle infants and toddlers into car seats because it was something that wasn’t done for our children. Fortunately, most new grandparents now already have those buckle-and-click skills and mindset. But,
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
Many decades ago I wrote a book I brazenly titled: “The Good Grandmother Handbook.” I had been a parent for a scant 7 or 8 years but based on my experiences in the office I felt I had accumulated enough wisdom to suggest to women in their fifth to seventh decades how they might conduct themselves around their grandchildren. Luckily, the book never got further than several hundred pages of crudely typed manuscript. This was before word processing programs had settled into the home computer industry, which was still in its infancy.
But I continue find the subject of grandparents interesting. Now, with grandchildren of my own (the oldest has just graduated from high school) and scores of peers knee deep in their own grandparenting adventures, I hope that my perspective now has a bit less of a holier-than-thou aroma.
My most recent muse-prodding event came when I stumbled across an article about the epidemiology of unintentional pediatric firearm fatalities. Looking at 10 years of data from the National Violent Death Reporting System, the investigators found that in 80% of the cases the firearm owner was a relative of the victim; in slightly more than 60% of the cases the event occurred in the victim’s home.
The data set was not granular enough to define the exact relationship between the child and relative who owned the gun. I suspect that most often the relative was a parent or an uncle or aunt. However, viewed through my septuagenarian prism, this paper prompted me to wonder in how many of these fatalities the firearm owner was a grandparent.
I have only anecdotal observations, but I can easily recall situations here in Maine in which a child has been injured by his or her grandfather’s gun. The data from the study show that pediatric fatalities are bimodal, with the majority occurring in the 1- to 5-year age group and a second peak in adolescence. The grandparent-involved cases I can recall were in the younger demographic.
Unfortunately, firearms aren’t the only threat that other grandparents and I pose to the health and safety of our grandchildren. I can remember before the development of, and the widespread use of, tamper-proof pill bottles, “grandma’s purse” overdoses were an unfortunately common occurrence.
More recently, at least here in Maine, we have been hearing more about motorized vehicle–related injuries and fatalities – grandparents backing over their grandchildren in the driveway or, more often, grandfathers (usually) taking their young grandchildren for rides on their snowmobiles, ATVs, lawn tractors, (fill in the blank). Whenever one of these events occurs, my mind quickly jumps beyond the tragic loss of life to imagining what terrible and long-lasting emotional chaos these incidents have spawned in those families.
During the pandemic, many parents and grandparents became aware of the threat that viral-spewing young children pose to the older and more vulnerable generation. On the other hand, many parents have been told that having a grandparent around can present a risk to the health and safety of their grandchildren. It can be a touchy subject in families, and grandparents may bristle at “being treated like a child” when they are reminded that children aren’t small adults and that their own behavior may be setting a bad example or putting their grandchildren at risk.
My generation had to learn how to buckle infants and toddlers into car seats because it was something that wasn’t done for our children. Fortunately, most new grandparents now already have those buckle-and-click skills and mindset. But,
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].
Surveillance colonoscopy: When and how to stop
Dear colleagues,
Colonoscopy is the bread and butter of endoscopy. Multidisciplinary updates continue to support screening colonoscopy in reducing the risk of developing colorectal cancer. But there has been debate about the best uses of resources, especially with increased recognition of colorectal cancer (CRC) in younger patients, and successive guidelines lengthening the intervals for most surveillance colonoscopy.
In particular, when do we feel comfortable recommending cessation of surveillance colonoscopy especially in those who are 75-85 years old? Routine colonoscopy remains a very low-risk procedure even in older patients with multiple comorbidities.
In this issue of Perspectives, Dr. Petr Protiva and Dr. Mariam Naveed address this issue and provide differing perspectives on approaching surveillance colonoscopy in the elderly.
We welcome your thoughts on this issue on Twitter at @AGA_GIHN.
Gyanprakash A. Ketwaroo, MD, MSc, is associate professor of medicine, Yale University, New Haven, Conn., and chief of endoscopy at West Haven (Conn.) VA Medical Center. He is an associate editor for GI & Hepatology News.
Striking a balance: Deciding the optimal age to cease surveillance for colorectal neoplasia
BY PETR PROTIVA, MD, MPH
The appropriate age to stop surveillance for colorectal neoplasia remains uncertain. Screening for average-risk individuals is typically stopped at age 75, but personalized screening with shared decision-making may continue until age 85.1 Evidence suggests that any survival benefit of screening past age 86 would be outweighed by the harm of screening and/or natural mortality. Nevertheless, determining the optimal age for surveillance in those with a history of neoplasia still poses some challenges. The issue is confounded as many clinicians use the terms “screening” and “surveillance” interchangeably. It should be noted that screening implies the individual is at average risk, while surveillance refers to those at elevated risk because of a personal history of colonic adenomas or cancer
Comorbidities and life expectancy
Despite recent staggering setbacks and a drop in the average life expectancy in the United States, the proportion of individuals older than 65 years old has been steadily increasing to a currently estimated 58.9 million – 16.8% of the U.S. population – and is projected to increase in the future.2 However, the prevalence of comorbidities also increases with age, and these are crucial factors to weigh in the decision-making process. Severe comorbid conditions, such as chronic obstructive pulmonary disease, cirrhosis, chronic hepatitis, chronic renal failure, dementia, and congestive heart failure can limit a patient’s ability to undergo surveillance and diminish or negate its benefits. There are online tools that help clinicians estimate life expectancy and time to benefit (that is, time between the intervention and its benefit), such as the Lee or Schonberg index.3 Consensus on time to colorectal screening benefit is about 9-10 years, but may be much shorter for surveillance. Striking a balance between the potential benefits of continued surveillance and the risks and burdens imposed on older adults with limited life expectancy is essential for making well-informed decisions.
Age-related risk increase and risk of neoplasia in the surveillance population:
The absolute risk of developing colorectal cancer is dependent on age. In adults aged 45-49, it is 33.4/100,000, rising to 135.6 in those 70-74 years old; in persons aged 85 and older, it is 234.7/100,000.4 A significant challenge in determining the appropriate age to stop surveillance is the additional individual risk based on baseline polyp characteristics. It seems reasonable to treat low-risk adenomas similarly to screening and stop surveillance by 85 or 86 years old in most cases. The decision process is less clear in individuals with advanced lesions or a personal history of colon cancer. The prevalence of advanced adenomas on the baseline exam is about 15% and greater than 20% on the follow-up exam if the index adenoma(s) were at least 20 mm in diameter. For five or more adenomas at baseline, the prevalence of advanced lesions on follow-up exam is about 20%. On the other hand, a negative surveillance colonoscopy (that is, no polyps found) is associated with far fewer advanced lesions on follow-up.
Colonoscopy
The safety of colonoscopy in older adults should be considered. The colonoscopy procedure is generally very safe, but is associated with a higher risk of post-procedure complications after outpatient colonoscopy in patients 75 years and older. In addition, comorbidities such as anemia, cardiac arrhythmia, heart failure, hypertension, chronic kidney disease, liver disease, smoking history, and obesity are also risk factors. It should be noted that high-quality colonoscopy is key to the detection and full removal of neoplastic lesions and risk reduction. The inability to achieve adequate colon preparation for any reason or undertaking colonoscopy in patients at high risk for complications reduces its benefit.
Who should oversee surveillance, the primary care physician or gastroenterologist
Should a gastroenterologist oversee the decision on surveillance in older adults based on a combination of age, estimated procedure risk and benefits, patient preferences, and current guidelines? Certainly, it seems appropriate and that this is what most specialists think, according to a recent survey of gastroenterologists and primary care physicians (PCPs) on this topic.5 Perhaps, not surprisingly, most PCPs disagreed – PCPs are thoroughly familiar with their patients’ up-to-date comorbidities, functional status, and preferences, and they have the benefit of knowing them for a long time. They also integrate diagnostic results from multiple subspecialists, sometimes from different states. The role of PCPs is critical in centers that offer open-access colonoscopy. Gastroenterologists may be the most appropriate authority to evaluate older individuals for continued surveillance, but in most busy practices these patients are seen by mid-level practitioners. Specialists play an important role if the PCP is uncertain whether surveillance is still indicated or in older patients with a history of advanced adenoma. Therefore, the colonoscopy report or subsequent communication after pathology results are returned should include a recommendation for future surveillance and a clear provision for discontinuing the surveillance in case of future health decline.
Conclusion
Determining the optimal age to discontinue surveillance for colorectal neoplasia involves evaluating multiple factors. Although the age limit is clearer for average-risk screening and low-risk lesion surveillance, uncertainty remains for individuals with advanced neoplasia history. Significant factors in this decision-making process include subsequent neoplasia risk, comorbidities, life expectancy, and age-related risks associated with colonoscopy. Cooperation between PCPs and subspecialty physicians is essential in making surveillance decisions for older adults. PCPs are well positioned to consider detailed patient comorbidities, functional status, and patient preferences, especially with the help of online life-expectancy estimators for most elderly or comorbid patients. To assist in this process, gastroenterologists should state clearly in their procedure report and subsequent pathology letters whether surveillance is recommended and that it is conditional on future comorbidities and should be discontinued if the patient’s health significantly declines.
Dr. Protiva is associate professor of medicine, Yale University, and director of the colon cancer screening program, VA Connecticut Healthcare System, West Haven. Dr. Protiva has no relevant disclosures.
References
1. Patel SG et al. Gastroenterology. 2022;162:285-99
2. U.S. Census Bureau. Measuring America’s People, Places, and Economy
3. University of California, San Francisco. ePrognosis. 4. Siegel RL et al. CA Cancer J Clin. 2023 May-Jun;73(3):233-54.
5. Schoenborn NL et al. Am J Gastroenterol. 2023; 118(3):523-30.
The gastroenterologist should guide the decision to maintain, or halt, surveillance in older adults
BY MARIAM NAVEED, MD
Endoscopic screening and surveillance for CRC in older adults (≥ 75 years old) is a medical “gray area” that needs more high-quality data to inform clinical decision making. In the most recent 2022 clinical guideline update from the U.S. Multisociety Task Force on Colorectal Cancer, the recommendation to stop CRC screening in average risk patients older than 86 years is well supported because of colonoscopy-associated mortality risk outweighing the benefits of adenoma detection and removal. By comparison, screening recommendations for average risk individuals between 76-85 years old are ambiguous and ultimately the decision to proceed with colonoscopy in this clinical population should be individualized based on shared decision making between the provider and patient. Of note, the same guideline provides no specific guidance for ongoing surveillance in the same age group and similarly suggests a shared decision-making approach.1
As a practicing gastroenterologist in the retirement capital of Florida, older adults comprise a large portion of my clinical practice. I have noticed several aspects unique to this demographic that merit special consideration. For example, a significant percentage of these patients are seasonal (that is, “snowbird”) patients that have multiple sets of doctors (set of physicians in their home state and another set in Florida). Consequently, fragmentation of clinical data enables opportunities for colonoscopies to be wrongly ordered (either in an inappropriate time frame and/or for inaccurate indications). In my own practice, when such a patient is referred for consideration of CRC surveillance, any/all external records must first be obtained and validated as a prerequisite for appropriate clinical counseling and informed decision-making. Additionally, consideration of periprocedural risks is particularly relevant in older adults, secondary to both the increased rate of direct complications and the likelihood of pre-existing comorbidities affecting completion of a safe colonoscopy. Factors that can be easily overlooked include higher rates of poor bowel preparation and corresponding decreased completion rates. Moreover, if the patient has a history of high-risk adenomas or worrisome family history warranting ongoing evaluation, but they also have high-risk comorbidities, I will frequently involve the patient’s cardiologist or pulmonologist to provide medical clearance prior to offering CRC screening/surveillance.
In addition to the clinical ambiguity of appropriateness of continued CRC screening/surveillance in the setting of advanced age, there is also the question of which provider is best positioned to counsel patients regarding this decision-making. Does the onus fall on the gastroenterologist (the proceduralist ultimately performing the procedure) or the PCP (who is likely more familiar with the patient’s overall health profile)? In a recent survey, more than 50% of PCPs reported feeling uncertain in their understanding of risk versus benefit stratification of continued CRC screening in older adults.2 While there may be justification for both classes of providers to be involved, in my opinion, the decision to maintain or halt surveillance in older adults should be primarily guided by the gastroenterologist who is better equipped to provide individualized guidance regarding the nuanced risks of disease progression in these patients with prior history of adenomas, and who is clinically responsible for any procedure-related complications.
In an era of cost containment, insurance companies are increasingly placing barriers for approving surveillance and diagnostic colonoscopies. Thus, we need to be ever mindful of appropriately allocating resources to best benefit patients. The data on incidence of polyps and CRC in older adults is inconsistent and even difficult at times for a gastroenterologist to interpret. Therefore, in my opinion, the onus should not fall solely on the PCPs who are not routinely familiar with this information. We as gastroenterologists typically have greater domain-specific knowledge regarding current data and updated guidelines.
Gastroenterologists should wield this expertise to regulate overly liberalized recommendations for continued surveillance in fragile patients, or conversely to intervene in settings of prematurely halting surveillance in high-risk populations with appropriate life expectancy to experience disease progression. It is critical to carefully consider patient-individualized life expectancies, avoid surveillance in patients without clinically significant polyps, avoid over-weighting previous abnormal prior colonoscopies without reviewing more current procedure results, and take time to discuss patient preferences. As proceduralists, we must also be mindful of intrinsic biases towards performing surveillance in patients who are not likely to benefit from this intervention, and several studies have reported on the overuse of surveillance colonoscopies in the form of repeating surveillance earlier than recommended or in the context of limited life expectancy.3
Finally, it is necessary to emphasize that PCPs are critical allies for promoting overall patient health, especially in scenarios where recommendations to discontinue surveillance may not coincide with patient preference. It has been reported that patients usually do not consider poor overall health relevant to decisions regarding CRC surveillance (which I have also experienced to be true).4 In these scenarios, partnering with the PCP can be strategic, as patients may be more inclined to trust the guidance of their more familiar physician. At the end of the day, regardless of which provider takes ownership of initiating the discussion surrounding surveillance colonoscopy in older adults, communication is key between all providers and the patient to ensure optimal outcomes.
As the U.S. population continues to age, the demographic of patients aged 65 and older is projected to nearly double by 2060.5 Decisions regarding ongoing surveillance for CRC will continue to be frequent and increasingly relevant. The importance of studies generating high-quality data to inform appropriate guidelines specific to this population cannot be understated.
Dr. Naveed is a gastroenterologist and director of the gastroenterology and hepatology fellowship program at AdventHealth Medical Group, Altamonte Springs, Fla. Dr. Naveed had no relevant disclosures.
References
1. Patel SG et al. Gastroenterology. 2022 Jan;162(1):285-99.
2 Schoenborn NL et al. Am J Gastroenterol. 2023 Mar 1;118(3):523-30.
3 Calderwood AH et al. JAMA Intern Med. 2023 May 1;183(5):426-34.
4 Schoenborn NL et al. Am J Gastroenterol. 2023 Mar 1;118(3):523-30.
5 U.S. Census Bureau. Population Projections.
Dear colleagues,
Colonoscopy is the bread and butter of endoscopy. Multidisciplinary updates continue to support screening colonoscopy in reducing the risk of developing colorectal cancer. But there has been debate about the best uses of resources, especially with increased recognition of colorectal cancer (CRC) in younger patients, and successive guidelines lengthening the intervals for most surveillance colonoscopy.
In particular, when do we feel comfortable recommending cessation of surveillance colonoscopy especially in those who are 75-85 years old? Routine colonoscopy remains a very low-risk procedure even in older patients with multiple comorbidities.
In this issue of Perspectives, Dr. Petr Protiva and Dr. Mariam Naveed address this issue and provide differing perspectives on approaching surveillance colonoscopy in the elderly.
We welcome your thoughts on this issue on Twitter at @AGA_GIHN.
Gyanprakash A. Ketwaroo, MD, MSc, is associate professor of medicine, Yale University, New Haven, Conn., and chief of endoscopy at West Haven (Conn.) VA Medical Center. He is an associate editor for GI & Hepatology News.
Striking a balance: Deciding the optimal age to cease surveillance for colorectal neoplasia
BY PETR PROTIVA, MD, MPH
The appropriate age to stop surveillance for colorectal neoplasia remains uncertain. Screening for average-risk individuals is typically stopped at age 75, but personalized screening with shared decision-making may continue until age 85.1 Evidence suggests that any survival benefit of screening past age 86 would be outweighed by the harm of screening and/or natural mortality. Nevertheless, determining the optimal age for surveillance in those with a history of neoplasia still poses some challenges. The issue is confounded as many clinicians use the terms “screening” and “surveillance” interchangeably. It should be noted that screening implies the individual is at average risk, while surveillance refers to those at elevated risk because of a personal history of colonic adenomas or cancer
Comorbidities and life expectancy
Despite recent staggering setbacks and a drop in the average life expectancy in the United States, the proportion of individuals older than 65 years old has been steadily increasing to a currently estimated 58.9 million – 16.8% of the U.S. population – and is projected to increase in the future.2 However, the prevalence of comorbidities also increases with age, and these are crucial factors to weigh in the decision-making process. Severe comorbid conditions, such as chronic obstructive pulmonary disease, cirrhosis, chronic hepatitis, chronic renal failure, dementia, and congestive heart failure can limit a patient’s ability to undergo surveillance and diminish or negate its benefits. There are online tools that help clinicians estimate life expectancy and time to benefit (that is, time between the intervention and its benefit), such as the Lee or Schonberg index.3 Consensus on time to colorectal screening benefit is about 9-10 years, but may be much shorter for surveillance. Striking a balance between the potential benefits of continued surveillance and the risks and burdens imposed on older adults with limited life expectancy is essential for making well-informed decisions.
Age-related risk increase and risk of neoplasia in the surveillance population:
The absolute risk of developing colorectal cancer is dependent on age. In adults aged 45-49, it is 33.4/100,000, rising to 135.6 in those 70-74 years old; in persons aged 85 and older, it is 234.7/100,000.4 A significant challenge in determining the appropriate age to stop surveillance is the additional individual risk based on baseline polyp characteristics. It seems reasonable to treat low-risk adenomas similarly to screening and stop surveillance by 85 or 86 years old in most cases. The decision process is less clear in individuals with advanced lesions or a personal history of colon cancer. The prevalence of advanced adenomas on the baseline exam is about 15% and greater than 20% on the follow-up exam if the index adenoma(s) were at least 20 mm in diameter. For five or more adenomas at baseline, the prevalence of advanced lesions on follow-up exam is about 20%. On the other hand, a negative surveillance colonoscopy (that is, no polyps found) is associated with far fewer advanced lesions on follow-up.
Colonoscopy
The safety of colonoscopy in older adults should be considered. The colonoscopy procedure is generally very safe, but is associated with a higher risk of post-procedure complications after outpatient colonoscopy in patients 75 years and older. In addition, comorbidities such as anemia, cardiac arrhythmia, heart failure, hypertension, chronic kidney disease, liver disease, smoking history, and obesity are also risk factors. It should be noted that high-quality colonoscopy is key to the detection and full removal of neoplastic lesions and risk reduction. The inability to achieve adequate colon preparation for any reason or undertaking colonoscopy in patients at high risk for complications reduces its benefit.
Who should oversee surveillance, the primary care physician or gastroenterologist
Should a gastroenterologist oversee the decision on surveillance in older adults based on a combination of age, estimated procedure risk and benefits, patient preferences, and current guidelines? Certainly, it seems appropriate and that this is what most specialists think, according to a recent survey of gastroenterologists and primary care physicians (PCPs) on this topic.5 Perhaps, not surprisingly, most PCPs disagreed – PCPs are thoroughly familiar with their patients’ up-to-date comorbidities, functional status, and preferences, and they have the benefit of knowing them for a long time. They also integrate diagnostic results from multiple subspecialists, sometimes from different states. The role of PCPs is critical in centers that offer open-access colonoscopy. Gastroenterologists may be the most appropriate authority to evaluate older individuals for continued surveillance, but in most busy practices these patients are seen by mid-level practitioners. Specialists play an important role if the PCP is uncertain whether surveillance is still indicated or in older patients with a history of advanced adenoma. Therefore, the colonoscopy report or subsequent communication after pathology results are returned should include a recommendation for future surveillance and a clear provision for discontinuing the surveillance in case of future health decline.
Conclusion
Determining the optimal age to discontinue surveillance for colorectal neoplasia involves evaluating multiple factors. Although the age limit is clearer for average-risk screening and low-risk lesion surveillance, uncertainty remains for individuals with advanced neoplasia history. Significant factors in this decision-making process include subsequent neoplasia risk, comorbidities, life expectancy, and age-related risks associated with colonoscopy. Cooperation between PCPs and subspecialty physicians is essential in making surveillance decisions for older adults. PCPs are well positioned to consider detailed patient comorbidities, functional status, and patient preferences, especially with the help of online life-expectancy estimators for most elderly or comorbid patients. To assist in this process, gastroenterologists should state clearly in their procedure report and subsequent pathology letters whether surveillance is recommended and that it is conditional on future comorbidities and should be discontinued if the patient’s health significantly declines.
Dr. Protiva is associate professor of medicine, Yale University, and director of the colon cancer screening program, VA Connecticut Healthcare System, West Haven. Dr. Protiva has no relevant disclosures.
References
1. Patel SG et al. Gastroenterology. 2022;162:285-99
2. U.S. Census Bureau. Measuring America’s People, Places, and Economy
3. University of California, San Francisco. ePrognosis. 4. Siegel RL et al. CA Cancer J Clin. 2023 May-Jun;73(3):233-54.
5. Schoenborn NL et al. Am J Gastroenterol. 2023; 118(3):523-30.
The gastroenterologist should guide the decision to maintain, or halt, surveillance in older adults
BY MARIAM NAVEED, MD
Endoscopic screening and surveillance for CRC in older adults (≥ 75 years old) is a medical “gray area” that needs more high-quality data to inform clinical decision making. In the most recent 2022 clinical guideline update from the U.S. Multisociety Task Force on Colorectal Cancer, the recommendation to stop CRC screening in average risk patients older than 86 years is well supported because of colonoscopy-associated mortality risk outweighing the benefits of adenoma detection and removal. By comparison, screening recommendations for average risk individuals between 76-85 years old are ambiguous and ultimately the decision to proceed with colonoscopy in this clinical population should be individualized based on shared decision making between the provider and patient. Of note, the same guideline provides no specific guidance for ongoing surveillance in the same age group and similarly suggests a shared decision-making approach.1
As a practicing gastroenterologist in the retirement capital of Florida, older adults comprise a large portion of my clinical practice. I have noticed several aspects unique to this demographic that merit special consideration. For example, a significant percentage of these patients are seasonal (that is, “snowbird”) patients that have multiple sets of doctors (set of physicians in their home state and another set in Florida). Consequently, fragmentation of clinical data enables opportunities for colonoscopies to be wrongly ordered (either in an inappropriate time frame and/or for inaccurate indications). In my own practice, when such a patient is referred for consideration of CRC surveillance, any/all external records must first be obtained and validated as a prerequisite for appropriate clinical counseling and informed decision-making. Additionally, consideration of periprocedural risks is particularly relevant in older adults, secondary to both the increased rate of direct complications and the likelihood of pre-existing comorbidities affecting completion of a safe colonoscopy. Factors that can be easily overlooked include higher rates of poor bowel preparation and corresponding decreased completion rates. Moreover, if the patient has a history of high-risk adenomas or worrisome family history warranting ongoing evaluation, but they also have high-risk comorbidities, I will frequently involve the patient’s cardiologist or pulmonologist to provide medical clearance prior to offering CRC screening/surveillance.
In addition to the clinical ambiguity of appropriateness of continued CRC screening/surveillance in the setting of advanced age, there is also the question of which provider is best positioned to counsel patients regarding this decision-making. Does the onus fall on the gastroenterologist (the proceduralist ultimately performing the procedure) or the PCP (who is likely more familiar with the patient’s overall health profile)? In a recent survey, more than 50% of PCPs reported feeling uncertain in their understanding of risk versus benefit stratification of continued CRC screening in older adults.2 While there may be justification for both classes of providers to be involved, in my opinion, the decision to maintain or halt surveillance in older adults should be primarily guided by the gastroenterologist who is better equipped to provide individualized guidance regarding the nuanced risks of disease progression in these patients with prior history of adenomas, and who is clinically responsible for any procedure-related complications.
In an era of cost containment, insurance companies are increasingly placing barriers for approving surveillance and diagnostic colonoscopies. Thus, we need to be ever mindful of appropriately allocating resources to best benefit patients. The data on incidence of polyps and CRC in older adults is inconsistent and even difficult at times for a gastroenterologist to interpret. Therefore, in my opinion, the onus should not fall solely on the PCPs who are not routinely familiar with this information. We as gastroenterologists typically have greater domain-specific knowledge regarding current data and updated guidelines.
Gastroenterologists should wield this expertise to regulate overly liberalized recommendations for continued surveillance in fragile patients, or conversely to intervene in settings of prematurely halting surveillance in high-risk populations with appropriate life expectancy to experience disease progression. It is critical to carefully consider patient-individualized life expectancies, avoid surveillance in patients without clinically significant polyps, avoid over-weighting previous abnormal prior colonoscopies without reviewing more current procedure results, and take time to discuss patient preferences. As proceduralists, we must also be mindful of intrinsic biases towards performing surveillance in patients who are not likely to benefit from this intervention, and several studies have reported on the overuse of surveillance colonoscopies in the form of repeating surveillance earlier than recommended or in the context of limited life expectancy.3
Finally, it is necessary to emphasize that PCPs are critical allies for promoting overall patient health, especially in scenarios where recommendations to discontinue surveillance may not coincide with patient preference. It has been reported that patients usually do not consider poor overall health relevant to decisions regarding CRC surveillance (which I have also experienced to be true).4 In these scenarios, partnering with the PCP can be strategic, as patients may be more inclined to trust the guidance of their more familiar physician. At the end of the day, regardless of which provider takes ownership of initiating the discussion surrounding surveillance colonoscopy in older adults, communication is key between all providers and the patient to ensure optimal outcomes.
As the U.S. population continues to age, the demographic of patients aged 65 and older is projected to nearly double by 2060.5 Decisions regarding ongoing surveillance for CRC will continue to be frequent and increasingly relevant. The importance of studies generating high-quality data to inform appropriate guidelines specific to this population cannot be understated.
Dr. Naveed is a gastroenterologist and director of the gastroenterology and hepatology fellowship program at AdventHealth Medical Group, Altamonte Springs, Fla. Dr. Naveed had no relevant disclosures.
References
1. Patel SG et al. Gastroenterology. 2022 Jan;162(1):285-99.
2 Schoenborn NL et al. Am J Gastroenterol. 2023 Mar 1;118(3):523-30.
3 Calderwood AH et al. JAMA Intern Med. 2023 May 1;183(5):426-34.
4 Schoenborn NL et al. Am J Gastroenterol. 2023 Mar 1;118(3):523-30.
5 U.S. Census Bureau. Population Projections.
Dear colleagues,
Colonoscopy is the bread and butter of endoscopy. Multidisciplinary updates continue to support screening colonoscopy in reducing the risk of developing colorectal cancer. But there has been debate about the best uses of resources, especially with increased recognition of colorectal cancer (CRC) in younger patients, and successive guidelines lengthening the intervals for most surveillance colonoscopy.
In particular, when do we feel comfortable recommending cessation of surveillance colonoscopy especially in those who are 75-85 years old? Routine colonoscopy remains a very low-risk procedure even in older patients with multiple comorbidities.
In this issue of Perspectives, Dr. Petr Protiva and Dr. Mariam Naveed address this issue and provide differing perspectives on approaching surveillance colonoscopy in the elderly.
We welcome your thoughts on this issue on Twitter at @AGA_GIHN.
Gyanprakash A. Ketwaroo, MD, MSc, is associate professor of medicine, Yale University, New Haven, Conn., and chief of endoscopy at West Haven (Conn.) VA Medical Center. He is an associate editor for GI & Hepatology News.
Striking a balance: Deciding the optimal age to cease surveillance for colorectal neoplasia
BY PETR PROTIVA, MD, MPH
The appropriate age to stop surveillance for colorectal neoplasia remains uncertain. Screening for average-risk individuals is typically stopped at age 75, but personalized screening with shared decision-making may continue until age 85.1 Evidence suggests that any survival benefit of screening past age 86 would be outweighed by the harm of screening and/or natural mortality. Nevertheless, determining the optimal age for surveillance in those with a history of neoplasia still poses some challenges. The issue is confounded as many clinicians use the terms “screening” and “surveillance” interchangeably. It should be noted that screening implies the individual is at average risk, while surveillance refers to those at elevated risk because of a personal history of colonic adenomas or cancer
Comorbidities and life expectancy
Despite recent staggering setbacks and a drop in the average life expectancy in the United States, the proportion of individuals older than 65 years old has been steadily increasing to a currently estimated 58.9 million – 16.8% of the U.S. population – and is projected to increase in the future.2 However, the prevalence of comorbidities also increases with age, and these are crucial factors to weigh in the decision-making process. Severe comorbid conditions, such as chronic obstructive pulmonary disease, cirrhosis, chronic hepatitis, chronic renal failure, dementia, and congestive heart failure can limit a patient’s ability to undergo surveillance and diminish or negate its benefits. There are online tools that help clinicians estimate life expectancy and time to benefit (that is, time between the intervention and its benefit), such as the Lee or Schonberg index.3 Consensus on time to colorectal screening benefit is about 9-10 years, but may be much shorter for surveillance. Striking a balance between the potential benefits of continued surveillance and the risks and burdens imposed on older adults with limited life expectancy is essential for making well-informed decisions.
Age-related risk increase and risk of neoplasia in the surveillance population:
The absolute risk of developing colorectal cancer is dependent on age. In adults aged 45-49, it is 33.4/100,000, rising to 135.6 in those 70-74 years old; in persons aged 85 and older, it is 234.7/100,000.4 A significant challenge in determining the appropriate age to stop surveillance is the additional individual risk based on baseline polyp characteristics. It seems reasonable to treat low-risk adenomas similarly to screening and stop surveillance by 85 or 86 years old in most cases. The decision process is less clear in individuals with advanced lesions or a personal history of colon cancer. The prevalence of advanced adenomas on the baseline exam is about 15% and greater than 20% on the follow-up exam if the index adenoma(s) were at least 20 mm in diameter. For five or more adenomas at baseline, the prevalence of advanced lesions on follow-up exam is about 20%. On the other hand, a negative surveillance colonoscopy (that is, no polyps found) is associated with far fewer advanced lesions on follow-up.
Colonoscopy
The safety of colonoscopy in older adults should be considered. The colonoscopy procedure is generally very safe, but is associated with a higher risk of post-procedure complications after outpatient colonoscopy in patients 75 years and older. In addition, comorbidities such as anemia, cardiac arrhythmia, heart failure, hypertension, chronic kidney disease, liver disease, smoking history, and obesity are also risk factors. It should be noted that high-quality colonoscopy is key to the detection and full removal of neoplastic lesions and risk reduction. The inability to achieve adequate colon preparation for any reason or undertaking colonoscopy in patients at high risk for complications reduces its benefit.
Who should oversee surveillance, the primary care physician or gastroenterologist
Should a gastroenterologist oversee the decision on surveillance in older adults based on a combination of age, estimated procedure risk and benefits, patient preferences, and current guidelines? Certainly, it seems appropriate and that this is what most specialists think, according to a recent survey of gastroenterologists and primary care physicians (PCPs) on this topic.5 Perhaps, not surprisingly, most PCPs disagreed – PCPs are thoroughly familiar with their patients’ up-to-date comorbidities, functional status, and preferences, and they have the benefit of knowing them for a long time. They also integrate diagnostic results from multiple subspecialists, sometimes from different states. The role of PCPs is critical in centers that offer open-access colonoscopy. Gastroenterologists may be the most appropriate authority to evaluate older individuals for continued surveillance, but in most busy practices these patients are seen by mid-level practitioners. Specialists play an important role if the PCP is uncertain whether surveillance is still indicated or in older patients with a history of advanced adenoma. Therefore, the colonoscopy report or subsequent communication after pathology results are returned should include a recommendation for future surveillance and a clear provision for discontinuing the surveillance in case of future health decline.
Conclusion
Determining the optimal age to discontinue surveillance for colorectal neoplasia involves evaluating multiple factors. Although the age limit is clearer for average-risk screening and low-risk lesion surveillance, uncertainty remains for individuals with advanced neoplasia history. Significant factors in this decision-making process include subsequent neoplasia risk, comorbidities, life expectancy, and age-related risks associated with colonoscopy. Cooperation between PCPs and subspecialty physicians is essential in making surveillance decisions for older adults. PCPs are well positioned to consider detailed patient comorbidities, functional status, and patient preferences, especially with the help of online life-expectancy estimators for most elderly or comorbid patients. To assist in this process, gastroenterologists should state clearly in their procedure report and subsequent pathology letters whether surveillance is recommended and that it is conditional on future comorbidities and should be discontinued if the patient’s health significantly declines.
Dr. Protiva is associate professor of medicine, Yale University, and director of the colon cancer screening program, VA Connecticut Healthcare System, West Haven. Dr. Protiva has no relevant disclosures.
References
1. Patel SG et al. Gastroenterology. 2022;162:285-99
2. U.S. Census Bureau. Measuring America’s People, Places, and Economy
3. University of California, San Francisco. ePrognosis. 4. Siegel RL et al. CA Cancer J Clin. 2023 May-Jun;73(3):233-54.
5. Schoenborn NL et al. Am J Gastroenterol. 2023; 118(3):523-30.
The gastroenterologist should guide the decision to maintain, or halt, surveillance in older adults
BY MARIAM NAVEED, MD
Endoscopic screening and surveillance for CRC in older adults (≥ 75 years old) is a medical “gray area” that needs more high-quality data to inform clinical decision making. In the most recent 2022 clinical guideline update from the U.S. Multisociety Task Force on Colorectal Cancer, the recommendation to stop CRC screening in average risk patients older than 86 years is well supported because of colonoscopy-associated mortality risk outweighing the benefits of adenoma detection and removal. By comparison, screening recommendations for average risk individuals between 76-85 years old are ambiguous and ultimately the decision to proceed with colonoscopy in this clinical population should be individualized based on shared decision making between the provider and patient. Of note, the same guideline provides no specific guidance for ongoing surveillance in the same age group and similarly suggests a shared decision-making approach.1
As a practicing gastroenterologist in the retirement capital of Florida, older adults comprise a large portion of my clinical practice. I have noticed several aspects unique to this demographic that merit special consideration. For example, a significant percentage of these patients are seasonal (that is, “snowbird”) patients that have multiple sets of doctors (set of physicians in their home state and another set in Florida). Consequently, fragmentation of clinical data enables opportunities for colonoscopies to be wrongly ordered (either in an inappropriate time frame and/or for inaccurate indications). In my own practice, when such a patient is referred for consideration of CRC surveillance, any/all external records must first be obtained and validated as a prerequisite for appropriate clinical counseling and informed decision-making. Additionally, consideration of periprocedural risks is particularly relevant in older adults, secondary to both the increased rate of direct complications and the likelihood of pre-existing comorbidities affecting completion of a safe colonoscopy. Factors that can be easily overlooked include higher rates of poor bowel preparation and corresponding decreased completion rates. Moreover, if the patient has a history of high-risk adenomas or worrisome family history warranting ongoing evaluation, but they also have high-risk comorbidities, I will frequently involve the patient’s cardiologist or pulmonologist to provide medical clearance prior to offering CRC screening/surveillance.
In addition to the clinical ambiguity of appropriateness of continued CRC screening/surveillance in the setting of advanced age, there is also the question of which provider is best positioned to counsel patients regarding this decision-making. Does the onus fall on the gastroenterologist (the proceduralist ultimately performing the procedure) or the PCP (who is likely more familiar with the patient’s overall health profile)? In a recent survey, more than 50% of PCPs reported feeling uncertain in their understanding of risk versus benefit stratification of continued CRC screening in older adults.2 While there may be justification for both classes of providers to be involved, in my opinion, the decision to maintain or halt surveillance in older adults should be primarily guided by the gastroenterologist who is better equipped to provide individualized guidance regarding the nuanced risks of disease progression in these patients with prior history of adenomas, and who is clinically responsible for any procedure-related complications.
In an era of cost containment, insurance companies are increasingly placing barriers for approving surveillance and diagnostic colonoscopies. Thus, we need to be ever mindful of appropriately allocating resources to best benefit patients. The data on incidence of polyps and CRC in older adults is inconsistent and even difficult at times for a gastroenterologist to interpret. Therefore, in my opinion, the onus should not fall solely on the PCPs who are not routinely familiar with this information. We as gastroenterologists typically have greater domain-specific knowledge regarding current data and updated guidelines.
Gastroenterologists should wield this expertise to regulate overly liberalized recommendations for continued surveillance in fragile patients, or conversely to intervene in settings of prematurely halting surveillance in high-risk populations with appropriate life expectancy to experience disease progression. It is critical to carefully consider patient-individualized life expectancies, avoid surveillance in patients without clinically significant polyps, avoid over-weighting previous abnormal prior colonoscopies without reviewing more current procedure results, and take time to discuss patient preferences. As proceduralists, we must also be mindful of intrinsic biases towards performing surveillance in patients who are not likely to benefit from this intervention, and several studies have reported on the overuse of surveillance colonoscopies in the form of repeating surveillance earlier than recommended or in the context of limited life expectancy.3
Finally, it is necessary to emphasize that PCPs are critical allies for promoting overall patient health, especially in scenarios where recommendations to discontinue surveillance may not coincide with patient preference. It has been reported that patients usually do not consider poor overall health relevant to decisions regarding CRC surveillance (which I have also experienced to be true).4 In these scenarios, partnering with the PCP can be strategic, as patients may be more inclined to trust the guidance of their more familiar physician. At the end of the day, regardless of which provider takes ownership of initiating the discussion surrounding surveillance colonoscopy in older adults, communication is key between all providers and the patient to ensure optimal outcomes.
As the U.S. population continues to age, the demographic of patients aged 65 and older is projected to nearly double by 2060.5 Decisions regarding ongoing surveillance for CRC will continue to be frequent and increasingly relevant. The importance of studies generating high-quality data to inform appropriate guidelines specific to this population cannot be understated.
Dr. Naveed is a gastroenterologist and director of the gastroenterology and hepatology fellowship program at AdventHealth Medical Group, Altamonte Springs, Fla. Dr. Naveed had no relevant disclosures.
References
1. Patel SG et al. Gastroenterology. 2022 Jan;162(1):285-99.
2 Schoenborn NL et al. Am J Gastroenterol. 2023 Mar 1;118(3):523-30.
3 Calderwood AH et al. JAMA Intern Med. 2023 May 1;183(5):426-34.
4 Schoenborn NL et al. Am J Gastroenterol. 2023 Mar 1;118(3):523-30.
5 U.S. Census Bureau. Population Projections.
The most important question in medicine
Welcome to Impact Factor, your weekly dose of commentary on a new medical study. I’m Dr. F. Perry Wilson of the Yale School of Medicine.
Today I am going to tell you the single best question you can ask any doctor, the one that has saved my butt countless times throughout my career, the one that every attending physician should be asking every intern and resident when they present a new case. That question: “What else could this be?”
I know, I know – “When you hear hoofbeats, think horses, not zebras.” I get it. But sometimes we get so good at our jobs, so good at recognizing horses, that we stop asking ourselves about zebras at all. You see this in a phenomenon known as “anchoring bias” where physicians, when presented with a diagnosis, tend to latch on to that diagnosis based on the first piece of information given, paying attention to data that support it and ignoring data that point in other directions.
That special question: “What else could this be?”, breaks through that barrier. It forces you, the medical team, everyone, to go through the exercise of real, old-fashioned differential diagnosis. And I promise that if you do this enough, at some point it will save someone’s life.
Though the concept of anchoring bias in medicine is broadly understood, it hasn’t been broadly studied until now, with this study appearing in JAMA Internal Medicine.
Here’s the setup.
The authors hypothesized that there would be substantial anchoring bias when patients with heart failure presented to the emergency department with shortness of breath if the triage “visit reason” section mentioned HF. We’re talking about the subtle difference between the following:
- Visit reason: Shortness of breath
- Visit reason: Shortness of breath/HF
People with HF can be short of breath for lots of reasons. HF exacerbation comes immediately to mind and it should. But there are obviously lots of answers to that “What else could this be?” question: pneumonia, pneumothorax, heart attack, COPD, and, of course, pulmonary embolism (PE).
The authors leveraged the nationwide VA database, allowing them to examine data from over 100,000 patients presenting to various VA EDs with shortness of breath. They then looked for particular tests – D-dimer, CT chest with contrast, V/Q scan, lower-extremity Doppler — that would suggest that the doctor was thinking about PE. The question, then, is whether mentioning HF in that little “visit reason” section would influence the likelihood of testing for PE.
I know what you’re thinking: Not everyone who is short of breath needs an evaluation for PE. And the authors did a nice job accounting for a variety of factors that might predict a PE workup: malignancy, recent surgery, elevated heart rate, low oxygen saturation, etc. Of course, some of those same factors might predict whether that triage nurse will write HF in the visit reason section. All of these things need to be accounted for statistically, and were, but – the unofficial Impact Factor motto reminds us that “there are always more confounders.”
But let’s dig into the results. I’m going to give you the raw numbers first. There were 4,392 people with HF whose visit reason section, in addition to noting shortness of breath, explicitly mentioned HF. Of those, 360 had PE testing and two had a PE diagnosed during that ED visit. So that’s around an 8% testing rate and a 0.5% hit rate for testing. But 43 people, presumably not tested in the ED, had a PE diagnosed within the next 30 days. Assuming that those PEs were present at the ED visit, that means the ED missed 95% of the PEs in the group with that HF label attached to them.
Let’s do the same thing for those whose visit reason just said “shortness of breath.”
Of the 103,627 people in that category, 13,886 were tested for PE and 231 of those tested positive. So that is an overall testing rate of around 13% and a hit rate of 1.7%. And 1,081 of these people had a PE diagnosed within 30 days. Assuming that those PEs were actually present at the ED visit, the docs missed 79% of them.
There’s one other thing to notice from the data: The overall PE rate (diagnosed by 30 days) was basically the same in both groups. That HF label does not really flag a group at lower risk for PE.
Yes, there are a lot of assumptions here, including that all PEs that were actually there in the ED got caught within 30 days, but the numbers do paint a picture. In this unadjusted analysis, it seems that the HF label leads to less testing and more missed PEs. Classic anchoring bias.
The adjusted analysis, accounting for all those PE risk factors, really didn’t change these results. You get nearly the same numbers and thus nearly the same conclusions.
Now, the main missing piece of this puzzle is in the mind of the clinician. We don’t know whether they didn’t consider PE or whether they considered PE but thought it unlikely. And in the end, it’s clear that the vast majority of people in this study did not have PE (though I suspect not all had a simple HF exacerbation). But this type of analysis is useful not only for the empiric evidence of the clinical impact of anchoring bias but because of the fact that it reminds us all to ask that all-important question: What else could this be?
F. Perry Wilson, MD, MSCE, is an associate professor of medicine and director of Yale’s Clinical and Translational Research Accelerator in New Haven, Conn. He reported no conflicts of interest.
A version of this article first appeared on Medscape.com.
Welcome to Impact Factor, your weekly dose of commentary on a new medical study. I’m Dr. F. Perry Wilson of the Yale School of Medicine.
Today I am going to tell you the single best question you can ask any doctor, the one that has saved my butt countless times throughout my career, the one that every attending physician should be asking every intern and resident when they present a new case. That question: “What else could this be?”
I know, I know – “When you hear hoofbeats, think horses, not zebras.” I get it. But sometimes we get so good at our jobs, so good at recognizing horses, that we stop asking ourselves about zebras at all. You see this in a phenomenon known as “anchoring bias” where physicians, when presented with a diagnosis, tend to latch on to that diagnosis based on the first piece of information given, paying attention to data that support it and ignoring data that point in other directions.
That special question: “What else could this be?”, breaks through that barrier. It forces you, the medical team, everyone, to go through the exercise of real, old-fashioned differential diagnosis. And I promise that if you do this enough, at some point it will save someone’s life.
Though the concept of anchoring bias in medicine is broadly understood, it hasn’t been broadly studied until now, with this study appearing in JAMA Internal Medicine.
Here’s the setup.
The authors hypothesized that there would be substantial anchoring bias when patients with heart failure presented to the emergency department with shortness of breath if the triage “visit reason” section mentioned HF. We’re talking about the subtle difference between the following:
- Visit reason: Shortness of breath
- Visit reason: Shortness of breath/HF
People with HF can be short of breath for lots of reasons. HF exacerbation comes immediately to mind and it should. But there are obviously lots of answers to that “What else could this be?” question: pneumonia, pneumothorax, heart attack, COPD, and, of course, pulmonary embolism (PE).
The authors leveraged the nationwide VA database, allowing them to examine data from over 100,000 patients presenting to various VA EDs with shortness of breath. They then looked for particular tests – D-dimer, CT chest with contrast, V/Q scan, lower-extremity Doppler — that would suggest that the doctor was thinking about PE. The question, then, is whether mentioning HF in that little “visit reason” section would influence the likelihood of testing for PE.
I know what you’re thinking: Not everyone who is short of breath needs an evaluation for PE. And the authors did a nice job accounting for a variety of factors that might predict a PE workup: malignancy, recent surgery, elevated heart rate, low oxygen saturation, etc. Of course, some of those same factors might predict whether that triage nurse will write HF in the visit reason section. All of these things need to be accounted for statistically, and were, but – the unofficial Impact Factor motto reminds us that “there are always more confounders.”
But let’s dig into the results. I’m going to give you the raw numbers first. There were 4,392 people with HF whose visit reason section, in addition to noting shortness of breath, explicitly mentioned HF. Of those, 360 had PE testing and two had a PE diagnosed during that ED visit. So that’s around an 8% testing rate and a 0.5% hit rate for testing. But 43 people, presumably not tested in the ED, had a PE diagnosed within the next 30 days. Assuming that those PEs were present at the ED visit, that means the ED missed 95% of the PEs in the group with that HF label attached to them.
Let’s do the same thing for those whose visit reason just said “shortness of breath.”
Of the 103,627 people in that category, 13,886 were tested for PE and 231 of those tested positive. So that is an overall testing rate of around 13% and a hit rate of 1.7%. And 1,081 of these people had a PE diagnosed within 30 days. Assuming that those PEs were actually present at the ED visit, the docs missed 79% of them.
There’s one other thing to notice from the data: The overall PE rate (diagnosed by 30 days) was basically the same in both groups. That HF label does not really flag a group at lower risk for PE.
Yes, there are a lot of assumptions here, including that all PEs that were actually there in the ED got caught within 30 days, but the numbers do paint a picture. In this unadjusted analysis, it seems that the HF label leads to less testing and more missed PEs. Classic anchoring bias.
The adjusted analysis, accounting for all those PE risk factors, really didn’t change these results. You get nearly the same numbers and thus nearly the same conclusions.
Now, the main missing piece of this puzzle is in the mind of the clinician. We don’t know whether they didn’t consider PE or whether they considered PE but thought it unlikely. And in the end, it’s clear that the vast majority of people in this study did not have PE (though I suspect not all had a simple HF exacerbation). But this type of analysis is useful not only for the empiric evidence of the clinical impact of anchoring bias but because of the fact that it reminds us all to ask that all-important question: What else could this be?
F. Perry Wilson, MD, MSCE, is an associate professor of medicine and director of Yale’s Clinical and Translational Research Accelerator in New Haven, Conn. He reported no conflicts of interest.
A version of this article first appeared on Medscape.com.
Welcome to Impact Factor, your weekly dose of commentary on a new medical study. I’m Dr. F. Perry Wilson of the Yale School of Medicine.
Today I am going to tell you the single best question you can ask any doctor, the one that has saved my butt countless times throughout my career, the one that every attending physician should be asking every intern and resident when they present a new case. That question: “What else could this be?”
I know, I know – “When you hear hoofbeats, think horses, not zebras.” I get it. But sometimes we get so good at our jobs, so good at recognizing horses, that we stop asking ourselves about zebras at all. You see this in a phenomenon known as “anchoring bias” where physicians, when presented with a diagnosis, tend to latch on to that diagnosis based on the first piece of information given, paying attention to data that support it and ignoring data that point in other directions.
That special question: “What else could this be?”, breaks through that barrier. It forces you, the medical team, everyone, to go through the exercise of real, old-fashioned differential diagnosis. And I promise that if you do this enough, at some point it will save someone’s life.
Though the concept of anchoring bias in medicine is broadly understood, it hasn’t been broadly studied until now, with this study appearing in JAMA Internal Medicine.
Here’s the setup.
The authors hypothesized that there would be substantial anchoring bias when patients with heart failure presented to the emergency department with shortness of breath if the triage “visit reason” section mentioned HF. We’re talking about the subtle difference between the following:
- Visit reason: Shortness of breath
- Visit reason: Shortness of breath/HF
People with HF can be short of breath for lots of reasons. HF exacerbation comes immediately to mind and it should. But there are obviously lots of answers to that “What else could this be?” question: pneumonia, pneumothorax, heart attack, COPD, and, of course, pulmonary embolism (PE).
The authors leveraged the nationwide VA database, allowing them to examine data from over 100,000 patients presenting to various VA EDs with shortness of breath. They then looked for particular tests – D-dimer, CT chest with contrast, V/Q scan, lower-extremity Doppler — that would suggest that the doctor was thinking about PE. The question, then, is whether mentioning HF in that little “visit reason” section would influence the likelihood of testing for PE.
I know what you’re thinking: Not everyone who is short of breath needs an evaluation for PE. And the authors did a nice job accounting for a variety of factors that might predict a PE workup: malignancy, recent surgery, elevated heart rate, low oxygen saturation, etc. Of course, some of those same factors might predict whether that triage nurse will write HF in the visit reason section. All of these things need to be accounted for statistically, and were, but – the unofficial Impact Factor motto reminds us that “there are always more confounders.”
But let’s dig into the results. I’m going to give you the raw numbers first. There were 4,392 people with HF whose visit reason section, in addition to noting shortness of breath, explicitly mentioned HF. Of those, 360 had PE testing and two had a PE diagnosed during that ED visit. So that’s around an 8% testing rate and a 0.5% hit rate for testing. But 43 people, presumably not tested in the ED, had a PE diagnosed within the next 30 days. Assuming that those PEs were present at the ED visit, that means the ED missed 95% of the PEs in the group with that HF label attached to them.
Let’s do the same thing for those whose visit reason just said “shortness of breath.”
Of the 103,627 people in that category, 13,886 were tested for PE and 231 of those tested positive. So that is an overall testing rate of around 13% and a hit rate of 1.7%. And 1,081 of these people had a PE diagnosed within 30 days. Assuming that those PEs were actually present at the ED visit, the docs missed 79% of them.
There’s one other thing to notice from the data: The overall PE rate (diagnosed by 30 days) was basically the same in both groups. That HF label does not really flag a group at lower risk for PE.
Yes, there are a lot of assumptions here, including that all PEs that were actually there in the ED got caught within 30 days, but the numbers do paint a picture. In this unadjusted analysis, it seems that the HF label leads to less testing and more missed PEs. Classic anchoring bias.
The adjusted analysis, accounting for all those PE risk factors, really didn’t change these results. You get nearly the same numbers and thus nearly the same conclusions.
Now, the main missing piece of this puzzle is in the mind of the clinician. We don’t know whether they didn’t consider PE or whether they considered PE but thought it unlikely. And in the end, it’s clear that the vast majority of people in this study did not have PE (though I suspect not all had a simple HF exacerbation). But this type of analysis is useful not only for the empiric evidence of the clinical impact of anchoring bias but because of the fact that it reminds us all to ask that all-important question: What else could this be?
F. Perry Wilson, MD, MSCE, is an associate professor of medicine and director of Yale’s Clinical and Translational Research Accelerator in New Haven, Conn. He reported no conflicts of interest.
A version of this article first appeared on Medscape.com.
Updates on pregnancy outcomes in transgender men
Despite increased societal gains, transgender individuals are still a medically and socially underserved group. The historic rise of antitransgender legislation and the overturning of Roe v. Wade, further compound existing health care disparities, particularly in the realm of contraception and pregnancy. Obstetrician-gynecologists and midwives are typically first-line providers when discussing family planning and fertility options for all patients assigned female at birth. Unfortunately,
Only individuals who are assigned female at birth and have a uterus are capable of pregnancy. This can include both cisgender women and nonbinary/transgender men. However, societal and medical institutions are struggling with this shift in perspective from a traditionally gendered role to a more inclusive one. Obstetrician-gynecologists and midwives can serve to bridge this gap between these patients and societal misconceptions surrounding transgender men who desire and experience pregnancy.
Providers need to remember that many transmasculine individuals will still retain their uterus and are therefore capable of getting pregnant. While testosterone causes amenorrhea, if patients are engaging in penile-vaginal intercourse, conception is still possible. If a patient does not desire pregnancy, all contraceptive options available for cisgender women, which also include combined oral contraceptives, should be offered.
For patients seeking to become pregnant, testosterone must be discontinued. Testosterone is teratogenic; it can cause abnormal urogenital development in the female fetus and should be avoided even prior to conception.1,2 The timing of testosterone discontinuation is debatable. There are no well-established guidelines dictating how early pregnancy can be attempted after cessation of testosterone, but typically if menses has resumed, the teratogenic effects of testosterone are less likely.
For amenorrheic patients on testosterone, menses will occur, on average, 3-6 months after testosterone is stopped. Of note, the longer that testosterone has been suspended, the greater the likelihood of achieving pregnancy.3 In a study by Light et al., 72% of patients conceived within 6 months of attempting pregnancy, 80% resumed menses within 6 months of stopping testosterone, and 20% of individuals conceived while they were amenorrheic from testosterone.4
Psychosocial support is an essential part of pregnancy care in transgender men. For some patients, pregnancy can worsen gender dysphoria, whereas others are empowered by the experience. Insurance companies may also deny obstetric care services to transgender males who have already changed their gender marker from female to male on insurance policies.
Whether transmasculine individuals are at higher risk for pregnancy complications is largely unknown, although emerging research in this field has yielded interesting results. While testosterone can cause vaginal atrophy, it does not seem to increase a patient’s risk of vaginal lacerations or their ability to have a successful vaginal delivery. For transgender men with significant discomfort around their genitalia, an elective cesarean section may be appropriate.5
More recently, Stroumsa et al. conducted an analysis of all deliveries at a Michigan institution from 2014 to 2018. Patients with male gender at the time of delivery or with the diagnostic code of gender dysphoria were identified as transgender.6 The primary outcome of this study was severe parental morbidity (such as amniotic fluid embolism, acute myocardial infarction, eclampsia, etc.), with secondary outcomes investigating rates of cesarean delivery and preterm birth.
During this time period, the researchers identified 256 transgender patients and 1.3 million cisgender patients in their Medicaid database and 1,651 transgender patients and 1.5 million cisgender patients in the commercial database who had experienced a delivery.6 Compared with cisgender patients, transgender patients in the Medicaid database were younger, less likely to be white, and more likely to have a chronic condition.6 Compared with cisgender patients in the commercial database, transgender patients experienced higher rates of anxiety and depression.6 Both transgender and cisgender patients had similar rates of severe parental morbidity. Ironically, rates of cesarean delivery were lower, compared with cisgender patients, in both the Medicaid and commercial databases, with no differences observed between rates of preterm birth.6
While more research is needed on pregnancy in transgender men, this analysis is not only one of the largest to date, but it also challenges many misconceptions providers have regarding pregnancy outcomes. Even though transmasculine patients may require additional medical interventions to achieve pregnancy, such as assisted reproductive technology, or increased psychosocial support during the process, these initial studies are reassuring. Based on current evidence, these patients are not at greater risk for perinatal complications than their cisgender counterparts.
Despite these encouraging findings, there are still several challenges faced by transgender men when it comes to getting pregnant. For instance, they may have difficulty accessing fertility services because of financial constraints or experience a lack of awareness or prejudice from providers; they might also be subject to discrimination or stigma within health care settings. As front-line providers for obstetrical care, we must lead the way towards improving the care for pregnant transmasculine individuals.
Dr. Brandt is an ob.gyn. and fellowship-trained gender-affirming surgeon in West Reading, Pa.
References
1. Light A et al. Family planning and contraception use in transgender men. Contraception. 2018 Oct. doi: 10.1016/j.contraception.2018.06.006.
2. Krempasky C et al. Contraception across the transmasculine spectrum. Am J Obstet Gynecol. 2020 Feb. doi: 10.1016/j.ajog.2019.07.043.
3. Obedin-Maliver J, De Haan G. “Gynecologic care for transgender patients” in Ferrando C, ed., Comprehensive Care of the Transgender Patient. Philadelphia: Elsevier, 2019. 131-51.
4. Light AD et al. Transgender men who experienced pregnancy after female-to-male gender transitioning. Obstet Gynecol. 2014 Dec. doi: 10.1097/AOG.0000000000000540.
5. Brandt JS et al. Transgender men, pregnancy, and the “new” advanced paternal age: A review of the literature. Maturitas. 2019 Oct. doi: 10.1016/j.maturitas.2019.07.004.
6. Stroumsa D et al. Pregnancy outcomes in a U.S. cohort of transgender people. JAMA. 2023 Jun 6. doi: 10.1001/jama.2023.7688.
Despite increased societal gains, transgender individuals are still a medically and socially underserved group. The historic rise of antitransgender legislation and the overturning of Roe v. Wade, further compound existing health care disparities, particularly in the realm of contraception and pregnancy. Obstetrician-gynecologists and midwives are typically first-line providers when discussing family planning and fertility options for all patients assigned female at birth. Unfortunately,
Only individuals who are assigned female at birth and have a uterus are capable of pregnancy. This can include both cisgender women and nonbinary/transgender men. However, societal and medical institutions are struggling with this shift in perspective from a traditionally gendered role to a more inclusive one. Obstetrician-gynecologists and midwives can serve to bridge this gap between these patients and societal misconceptions surrounding transgender men who desire and experience pregnancy.
Providers need to remember that many transmasculine individuals will still retain their uterus and are therefore capable of getting pregnant. While testosterone causes amenorrhea, if patients are engaging in penile-vaginal intercourse, conception is still possible. If a patient does not desire pregnancy, all contraceptive options available for cisgender women, which also include combined oral contraceptives, should be offered.
For patients seeking to become pregnant, testosterone must be discontinued. Testosterone is teratogenic; it can cause abnormal urogenital development in the female fetus and should be avoided even prior to conception.1,2 The timing of testosterone discontinuation is debatable. There are no well-established guidelines dictating how early pregnancy can be attempted after cessation of testosterone, but typically if menses has resumed, the teratogenic effects of testosterone are less likely.
For amenorrheic patients on testosterone, menses will occur, on average, 3-6 months after testosterone is stopped. Of note, the longer that testosterone has been suspended, the greater the likelihood of achieving pregnancy.3 In a study by Light et al., 72% of patients conceived within 6 months of attempting pregnancy, 80% resumed menses within 6 months of stopping testosterone, and 20% of individuals conceived while they were amenorrheic from testosterone.4
Psychosocial support is an essential part of pregnancy care in transgender men. For some patients, pregnancy can worsen gender dysphoria, whereas others are empowered by the experience. Insurance companies may also deny obstetric care services to transgender males who have already changed their gender marker from female to male on insurance policies.
Whether transmasculine individuals are at higher risk for pregnancy complications is largely unknown, although emerging research in this field has yielded interesting results. While testosterone can cause vaginal atrophy, it does not seem to increase a patient’s risk of vaginal lacerations or their ability to have a successful vaginal delivery. For transgender men with significant discomfort around their genitalia, an elective cesarean section may be appropriate.5
More recently, Stroumsa et al. conducted an analysis of all deliveries at a Michigan institution from 2014 to 2018. Patients with male gender at the time of delivery or with the diagnostic code of gender dysphoria were identified as transgender.6 The primary outcome of this study was severe parental morbidity (such as amniotic fluid embolism, acute myocardial infarction, eclampsia, etc.), with secondary outcomes investigating rates of cesarean delivery and preterm birth.
During this time period, the researchers identified 256 transgender patients and 1.3 million cisgender patients in their Medicaid database and 1,651 transgender patients and 1.5 million cisgender patients in the commercial database who had experienced a delivery.6 Compared with cisgender patients, transgender patients in the Medicaid database were younger, less likely to be white, and more likely to have a chronic condition.6 Compared with cisgender patients in the commercial database, transgender patients experienced higher rates of anxiety and depression.6 Both transgender and cisgender patients had similar rates of severe parental morbidity. Ironically, rates of cesarean delivery were lower, compared with cisgender patients, in both the Medicaid and commercial databases, with no differences observed between rates of preterm birth.6
While more research is needed on pregnancy in transgender men, this analysis is not only one of the largest to date, but it also challenges many misconceptions providers have regarding pregnancy outcomes. Even though transmasculine patients may require additional medical interventions to achieve pregnancy, such as assisted reproductive technology, or increased psychosocial support during the process, these initial studies are reassuring. Based on current evidence, these patients are not at greater risk for perinatal complications than their cisgender counterparts.
Despite these encouraging findings, there are still several challenges faced by transgender men when it comes to getting pregnant. For instance, they may have difficulty accessing fertility services because of financial constraints or experience a lack of awareness or prejudice from providers; they might also be subject to discrimination or stigma within health care settings. As front-line providers for obstetrical care, we must lead the way towards improving the care for pregnant transmasculine individuals.
Dr. Brandt is an ob.gyn. and fellowship-trained gender-affirming surgeon in West Reading, Pa.
References
1. Light A et al. Family planning and contraception use in transgender men. Contraception. 2018 Oct. doi: 10.1016/j.contraception.2018.06.006.
2. Krempasky C et al. Contraception across the transmasculine spectrum. Am J Obstet Gynecol. 2020 Feb. doi: 10.1016/j.ajog.2019.07.043.
3. Obedin-Maliver J, De Haan G. “Gynecologic care for transgender patients” in Ferrando C, ed., Comprehensive Care of the Transgender Patient. Philadelphia: Elsevier, 2019. 131-51.
4. Light AD et al. Transgender men who experienced pregnancy after female-to-male gender transitioning. Obstet Gynecol. 2014 Dec. doi: 10.1097/AOG.0000000000000540.
5. Brandt JS et al. Transgender men, pregnancy, and the “new” advanced paternal age: A review of the literature. Maturitas. 2019 Oct. doi: 10.1016/j.maturitas.2019.07.004.
6. Stroumsa D et al. Pregnancy outcomes in a U.S. cohort of transgender people. JAMA. 2023 Jun 6. doi: 10.1001/jama.2023.7688.
Despite increased societal gains, transgender individuals are still a medically and socially underserved group. The historic rise of antitransgender legislation and the overturning of Roe v. Wade, further compound existing health care disparities, particularly in the realm of contraception and pregnancy. Obstetrician-gynecologists and midwives are typically first-line providers when discussing family planning and fertility options for all patients assigned female at birth. Unfortunately,
Only individuals who are assigned female at birth and have a uterus are capable of pregnancy. This can include both cisgender women and nonbinary/transgender men. However, societal and medical institutions are struggling with this shift in perspective from a traditionally gendered role to a more inclusive one. Obstetrician-gynecologists and midwives can serve to bridge this gap between these patients and societal misconceptions surrounding transgender men who desire and experience pregnancy.
Providers need to remember that many transmasculine individuals will still retain their uterus and are therefore capable of getting pregnant. While testosterone causes amenorrhea, if patients are engaging in penile-vaginal intercourse, conception is still possible. If a patient does not desire pregnancy, all contraceptive options available for cisgender women, which also include combined oral contraceptives, should be offered.
For patients seeking to become pregnant, testosterone must be discontinued. Testosterone is teratogenic; it can cause abnormal urogenital development in the female fetus and should be avoided even prior to conception.1,2 The timing of testosterone discontinuation is debatable. There are no well-established guidelines dictating how early pregnancy can be attempted after cessation of testosterone, but typically if menses has resumed, the teratogenic effects of testosterone are less likely.
For amenorrheic patients on testosterone, menses will occur, on average, 3-6 months after testosterone is stopped. Of note, the longer that testosterone has been suspended, the greater the likelihood of achieving pregnancy.3 In a study by Light et al., 72% of patients conceived within 6 months of attempting pregnancy, 80% resumed menses within 6 months of stopping testosterone, and 20% of individuals conceived while they were amenorrheic from testosterone.4
Psychosocial support is an essential part of pregnancy care in transgender men. For some patients, pregnancy can worsen gender dysphoria, whereas others are empowered by the experience. Insurance companies may also deny obstetric care services to transgender males who have already changed their gender marker from female to male on insurance policies.
Whether transmasculine individuals are at higher risk for pregnancy complications is largely unknown, although emerging research in this field has yielded interesting results. While testosterone can cause vaginal atrophy, it does not seem to increase a patient’s risk of vaginal lacerations or their ability to have a successful vaginal delivery. For transgender men with significant discomfort around their genitalia, an elective cesarean section may be appropriate.5
More recently, Stroumsa et al. conducted an analysis of all deliveries at a Michigan institution from 2014 to 2018. Patients with male gender at the time of delivery or with the diagnostic code of gender dysphoria were identified as transgender.6 The primary outcome of this study was severe parental morbidity (such as amniotic fluid embolism, acute myocardial infarction, eclampsia, etc.), with secondary outcomes investigating rates of cesarean delivery and preterm birth.
During this time period, the researchers identified 256 transgender patients and 1.3 million cisgender patients in their Medicaid database and 1,651 transgender patients and 1.5 million cisgender patients in the commercial database who had experienced a delivery.6 Compared with cisgender patients, transgender patients in the Medicaid database were younger, less likely to be white, and more likely to have a chronic condition.6 Compared with cisgender patients in the commercial database, transgender patients experienced higher rates of anxiety and depression.6 Both transgender and cisgender patients had similar rates of severe parental morbidity. Ironically, rates of cesarean delivery were lower, compared with cisgender patients, in both the Medicaid and commercial databases, with no differences observed between rates of preterm birth.6
While more research is needed on pregnancy in transgender men, this analysis is not only one of the largest to date, but it also challenges many misconceptions providers have regarding pregnancy outcomes. Even though transmasculine patients may require additional medical interventions to achieve pregnancy, such as assisted reproductive technology, or increased psychosocial support during the process, these initial studies are reassuring. Based on current evidence, these patients are not at greater risk for perinatal complications than their cisgender counterparts.
Despite these encouraging findings, there are still several challenges faced by transgender men when it comes to getting pregnant. For instance, they may have difficulty accessing fertility services because of financial constraints or experience a lack of awareness or prejudice from providers; they might also be subject to discrimination or stigma within health care settings. As front-line providers for obstetrical care, we must lead the way towards improving the care for pregnant transmasculine individuals.
Dr. Brandt is an ob.gyn. and fellowship-trained gender-affirming surgeon in West Reading, Pa.
References
1. Light A et al. Family planning and contraception use in transgender men. Contraception. 2018 Oct. doi: 10.1016/j.contraception.2018.06.006.
2. Krempasky C et al. Contraception across the transmasculine spectrum. Am J Obstet Gynecol. 2020 Feb. doi: 10.1016/j.ajog.2019.07.043.
3. Obedin-Maliver J, De Haan G. “Gynecologic care for transgender patients” in Ferrando C, ed., Comprehensive Care of the Transgender Patient. Philadelphia: Elsevier, 2019. 131-51.
4. Light AD et al. Transgender men who experienced pregnancy after female-to-male gender transitioning. Obstet Gynecol. 2014 Dec. doi: 10.1097/AOG.0000000000000540.
5. Brandt JS et al. Transgender men, pregnancy, and the “new” advanced paternal age: A review of the literature. Maturitas. 2019 Oct. doi: 10.1016/j.maturitas.2019.07.004.
6. Stroumsa D et al. Pregnancy outcomes in a U.S. cohort of transgender people. JAMA. 2023 Jun 6. doi: 10.1001/jama.2023.7688.
Ruptured aneurysm turns MD couple into doctor-patient
Dr. Taylor Delgado: It was Saturday night, and we had just gone to bed. Suddenly, Ali sat up, and screamed, “My head!” She then became nonresponsive and had a seizure. I was in disbelief, but I also knew exactly what was happening. I called 911: “My wife is having a head bleed. I need an ambulance.” It was a bad connection, and they could barely understand me.
As I tried to carry Ali downstairs, she vomited. She still had rubber bands in her mouth from the jaw fracture that was a result of her accident just a month ago. I knew she needed an airway.
I grabbed a tracheostomy tube, but the opening over her trachea put in for the accident had since closed. I tried to push the tube through her neck, but it hurt her; her eyes opened.
I thought to myself: Maybe she doesn’t need it. This can wait until she gets to the hospital. I can’t do this to her. But she vomited again, and I knew what I had to do.
We were at the top of our stairs. I didn’t have a blade or any other equipment, just the tracheostomy tube with the dilator. I pushed hard, and she started fighting me. I had to hold her hands away with one arm. The tube popped in and she stared back at me in pain and fear.
I finally got her downstairs and called medical control at University Hospital of Cincinnati. I was able to speak with one of the attendings: “Ali’s aneurysm ruptured, and she just had a seizure. She has a GCS of 11 or 12. I replaced her tracheostomy tube. We’ll be there shortly.”
When I heard sirens come down our street, I carried Ali outside, but the sirens were from a firetruck. They likely assumed someone had fallen and had a head laceration. It was beyond deflating. I yelled incredulously: “We need an ambulance here now!”
When the ambulance finally arrived, they tried to tell me that I could not ride with them. Or if I did, I would have to sit up front. After arguing back and forth for a few seconds, I finally demanded: “This is medical control. This is MD-88, and this is my patient. I’m sitting in back with you. She needs four Zofran and two midazolam IV now.”
One month earlier ...
Dr. Alison Delgado: Taylor and I were both 4 months into our second year of residency, and we had been married for 5 months. I was a pediatric resident at Cincinnati Children’s Hospital. She was an emergency medicine resident at the University Hospital. I was having my first day off in a couple weeks, and she was working a shift in the emergency department. She was also a part of the flight crew that day. Second-year residents would go out to the scenes of accidents or to other hospitals to transport the patient back to their Level I trauma center via helicopter. The resident was the physician and considered the leader on these flights.
That afternoon, I went for a bicycle ride. About three-quarters of the way through my ride, I was struck by a car.
The EMS crew got to me fairly quickly. They intubated me at the scene and got me to the closest hospital. Immediately, the hospital realized my case was outside the scope of their care. They contacted University Hospital requesting that their flight crew come to transport me.
Dr. Taylor Delgado: At around 5:30 p.m. the day of my shift, the tones went out on the radio: “AirCare 1 and Pod Doc, you are requested for interhospital transfer, 27-year-old Jane Doe, GCS 5.” That was the only information given.
When we landed at the hospital, I walked in with my nurse. I was listening to the doctor’s report and doing my once over. The patient was a little bit bradycardic, heart rate in the 40s or 50s. Blood pressure was normal if not a little bit elevated. There was obvious facial trauma. The endotracheal tube in place.
She was covered with a blanket, but some of her clothing was visible. Suddenly, I recognized it. It was our cycling team’s kit. I thought, please don’t let it be Ali.
My flight nurse went out and called back to dispatch. “This is my doc’s wife. Dispatch the second helicopter!” She had to repeat herself a few times before they understood what was happening.
As Ali’s spouse, I couldn’t be the flight doctor. I didn’t care. I called medical control myself and told them: “This is Ali. We have to fly her. She has a head injury.” They said: “You can’t fly her.” I said: “We can’t delay her care. I have to fly her.” They said: “No, you can’t fly her.” I broke down. Devastated.
I went back into the room and looked at Ali. Her heart rate was dropping. My flight nurse was in the trauma bay with the emergency physician. We realized definitive care was being delayed because of my presence, which was an awful feeling to have. I think at that point we realized, you do nothing, or you act. So, we acted.
I told my flight nurse: “Let’s give her atropine to increase her heart rate.” I asked about sedation, and she hadn’t had anything. I spurted off some doses: “a hundred of fentanyl and five of midazolam.” My flight nurse actually administered smaller doses. She thought it was a bit aggressive, and she was correct. I was trying to maintain composure, but it was hard.
The emergency medicine physician volunteered to fly with her, so I called back medical control in desperation: “This doctor’s willing to fly. Let him take her.”
They told me apologetically, knowing my agony, that he was not trained to fly and therefore could not do so. I sat down in the ambulance bay crying, waiting for the second helicopter to arrive.
When we got Ali onto AirCare 2, my nurse then told me I couldn’t fly with her. I said, “I’m flying with her.” She said, “no, it’s not safe.” I said, “I’m not leaving her. I’ll sit in the front. What do you think I’m going to do? Jump out of the helicopter?” I think they realized there was no other option that I would agree to. I rode up front.
It was the fastest flight to the trauma center that I had ever experienced. They did a hot offload, meaning they didn’t even shut down the blades. We got her to the trauma center. And then it was a whole other layer of chaos.
Dr. Alison Delgado: Taylor’s presence may have delayed my transfer, but the University emergency department was prepped and waiting for me. Radiology was on hold, surgery and neurosurgery were there waiting. Everyone was in the trauma bay.
Dr. Taylor Delgado: My younger sister was a social worker in that emergency department, and she was on shift. She and my residency director went to CT with Ali. As the images from Ali’s CT scan showed up on the screens, everyone in the room gasped. She had a nonsurvivable head injury.
The AirCare 2 doctor collapsed into our director’s arms and cried: “She’s going to die tonight.” He responded: “I know. But we’ve got work to do.” Then he asked my sister how close she was with me. She told him we were extremely close. “Good, because we have to break the news that she’s going to die tonight.”
But the doctor never told me. I was in the consultation room. He came in and told me that she had a lot of bleeding around the brain, but he couldn’t find the words to tell me the true severity. He didn’t have to.
Dr. Alison Delgado: I was in a coma for 5 days. Shift by shift, they were amazed that I was still there. I had a broken jaw, broken vertebrae in my spine, a broken clavicle and sternum and contusions to my heart and lungs. I was later found to have a dissection of my carotid artery as well as an aneurysm to the carotid artery. These were both caused by the accident.
My jaw was wired shut and a tracheostomy was placed. They coiled the aneurysm and put a stent in the dissection. I was placed on dual antiplatelet therapy to prevent stent thrombosis.
When I initially woke from the coma during my hospital stay, I could not speak, but I remember being told why I was there. My first two thoughts were: Was it my fault? and I need to get back to work.
Two and a half weeks later, I was stable enough to go to an in-patient rehab facility.
I was very motivated. I made a lot of good progress, because Taylor was there with me. We looked through pictures, trying to jog my memory and help with my vocabulary. I’d look at a bird and know this is a flying animal but couldn’t think of the word bird. I couldn’t remember my mom’s name.
Dr. Taylor Delgado: She was becoming more fluent with her speech each day. Her right arm was working more normally. We started going on walks outside. Within 14 days she was discharged home.
When we left the rehab facility, I took a couple extra tracheostomy tubes and supplies, because I didn’t know how long Ali would have her trach. The emergency medicine person in me just thought, always have these things on hand.
A few days later, her ENT doctor decannulated her tracheostomy tube. In our minds, we were done.
The next night, she had the intracranial hemorrhage.
Return to the hospital ...
Dr. Taylor Delgado: The aneurysm they had coiled had ruptured. Ali had a recurrent subarachnoid hemorrhage and an intracranial hemorrhage, and she was still bleeding. So, they took her to IR to try to embolize it and accomplished as much as they possibly could.
She had hydrocephalus, the ventricles in her brain were enlarged. Normally, they would put in a drain, but they couldn’t because she was on aspirin and Plavix (clopidogrel). That would risk her having a bleed around that insertion site, which would cause a brain hemorrhage.
Dr. Alison Delgado: I was like a ticking time bomb. We knew I would have to have surgery as soon as possible to open my skull and clip the aneurysm. But I had to be on the Plavix and aspirin for at least 6 weeks before it would be considered safe to discontinue them. It was another 3 weeks before they could proceed with the surgery.
The second hospitalization was scarier than the first, because I was much more aware. I knew that I might not be able to return to my residency and do the thing I had dreamed of doing. There were risks of me becoming blind or paralyzed during the surgery. I might not even leave the hospital.
Dr. Taylor Delgado: It was mid-December by then, and my dad asked her, “Ali, what do you want for Christmas?” She looked at him deadpan and said, “normal brain.”
Dr. Alison Delgado: The surgery was successful. I went home a few days later. But I’d lost everything I had gained in rehabilitation. My speech was back to square one.
None of the doctors really expected me to go back to work. But from my standpoint, I thought, I could have died the day I was hit. I could have died when the aneurysm ruptured, or at any point along the way. But I’m here and I’m going back to work.
Dr. Taylor Delgado: In January, I went back to work and I had to fly on the helicopter. They were worried about how I would react. My flight director flew with me on my first shift. Our first flight was an inter-facility STEMI transfer. No big deal. The second one was a car accident outside of Batesville, Ind. We were in the back of the ambulance, and I looked at this woman. She was 27 years old, thin, with long hair. She looked exactly like Ali.
Ali flashed into my mind, and I was like, nope. Ali’s at home. She’s fine. This person is right here, right now. Do what you do. I intubated her in the helicopter. We gave her hypertonic saline. I started a blood transfusion. Afterward, my flight director came up to me and said: “You’re released back to full duty. That was the hardest test you could possibly have on your first day back flying, and you nailed it.”
Dr. Alison Delgado: I finished my residency in December of 2012 and passed my pediatric board exam on the first try, almost exactly 3 years after my accident.
The spring before I started medical school in 2005, I had won the Cincinnati Flying Pig marathon. In 2011, a few months after my accident, they invited us to be the starters of the race. When we stood at the starting line, I decided right then I was going to run this marathon again the next year. In spring 2012, I returned and finished in fourth place, beating my previous winning time by two minutes.
I have a different level of empathy for my patients now. I know what it’s like to be scared. I know what it’s like to not know if you’re going to leave the hospital. I’ve lived that. The process of writing my book was also cathartic for me. I told my story to try to give people hope.
Dr. Taylor Delgado: I have a tattoo on my wrist showing the date of Ali’s accident. The idea was to remind myself of what we’ve come through and everyone who went above and beyond. To show gratitude to them and remember everything that they did for us. It’s also to remember that every patient I see is somebody else’s Alison.
A version of this article first appeared on Medscape.com.
Dr. Taylor Delgado: It was Saturday night, and we had just gone to bed. Suddenly, Ali sat up, and screamed, “My head!” She then became nonresponsive and had a seizure. I was in disbelief, but I also knew exactly what was happening. I called 911: “My wife is having a head bleed. I need an ambulance.” It was a bad connection, and they could barely understand me.
As I tried to carry Ali downstairs, she vomited. She still had rubber bands in her mouth from the jaw fracture that was a result of her accident just a month ago. I knew she needed an airway.
I grabbed a tracheostomy tube, but the opening over her trachea put in for the accident had since closed. I tried to push the tube through her neck, but it hurt her; her eyes opened.
I thought to myself: Maybe she doesn’t need it. This can wait until she gets to the hospital. I can’t do this to her. But she vomited again, and I knew what I had to do.
We were at the top of our stairs. I didn’t have a blade or any other equipment, just the tracheostomy tube with the dilator. I pushed hard, and she started fighting me. I had to hold her hands away with one arm. The tube popped in and she stared back at me in pain and fear.
I finally got her downstairs and called medical control at University Hospital of Cincinnati. I was able to speak with one of the attendings: “Ali’s aneurysm ruptured, and she just had a seizure. She has a GCS of 11 or 12. I replaced her tracheostomy tube. We’ll be there shortly.”
When I heard sirens come down our street, I carried Ali outside, but the sirens were from a firetruck. They likely assumed someone had fallen and had a head laceration. It was beyond deflating. I yelled incredulously: “We need an ambulance here now!”
When the ambulance finally arrived, they tried to tell me that I could not ride with them. Or if I did, I would have to sit up front. After arguing back and forth for a few seconds, I finally demanded: “This is medical control. This is MD-88, and this is my patient. I’m sitting in back with you. She needs four Zofran and two midazolam IV now.”
One month earlier ...
Dr. Alison Delgado: Taylor and I were both 4 months into our second year of residency, and we had been married for 5 months. I was a pediatric resident at Cincinnati Children’s Hospital. She was an emergency medicine resident at the University Hospital. I was having my first day off in a couple weeks, and she was working a shift in the emergency department. She was also a part of the flight crew that day. Second-year residents would go out to the scenes of accidents or to other hospitals to transport the patient back to their Level I trauma center via helicopter. The resident was the physician and considered the leader on these flights.
That afternoon, I went for a bicycle ride. About three-quarters of the way through my ride, I was struck by a car.
The EMS crew got to me fairly quickly. They intubated me at the scene and got me to the closest hospital. Immediately, the hospital realized my case was outside the scope of their care. They contacted University Hospital requesting that their flight crew come to transport me.
Dr. Taylor Delgado: At around 5:30 p.m. the day of my shift, the tones went out on the radio: “AirCare 1 and Pod Doc, you are requested for interhospital transfer, 27-year-old Jane Doe, GCS 5.” That was the only information given.
When we landed at the hospital, I walked in with my nurse. I was listening to the doctor’s report and doing my once over. The patient was a little bit bradycardic, heart rate in the 40s or 50s. Blood pressure was normal if not a little bit elevated. There was obvious facial trauma. The endotracheal tube in place.
She was covered with a blanket, but some of her clothing was visible. Suddenly, I recognized it. It was our cycling team’s kit. I thought, please don’t let it be Ali.
My flight nurse went out and called back to dispatch. “This is my doc’s wife. Dispatch the second helicopter!” She had to repeat herself a few times before they understood what was happening.
As Ali’s spouse, I couldn’t be the flight doctor. I didn’t care. I called medical control myself and told them: “This is Ali. We have to fly her. She has a head injury.” They said: “You can’t fly her.” I said: “We can’t delay her care. I have to fly her.” They said: “No, you can’t fly her.” I broke down. Devastated.
I went back into the room and looked at Ali. Her heart rate was dropping. My flight nurse was in the trauma bay with the emergency physician. We realized definitive care was being delayed because of my presence, which was an awful feeling to have. I think at that point we realized, you do nothing, or you act. So, we acted.
I told my flight nurse: “Let’s give her atropine to increase her heart rate.” I asked about sedation, and she hadn’t had anything. I spurted off some doses: “a hundred of fentanyl and five of midazolam.” My flight nurse actually administered smaller doses. She thought it was a bit aggressive, and she was correct. I was trying to maintain composure, but it was hard.
The emergency medicine physician volunteered to fly with her, so I called back medical control in desperation: “This doctor’s willing to fly. Let him take her.”
They told me apologetically, knowing my agony, that he was not trained to fly and therefore could not do so. I sat down in the ambulance bay crying, waiting for the second helicopter to arrive.
When we got Ali onto AirCare 2, my nurse then told me I couldn’t fly with her. I said, “I’m flying with her.” She said, “no, it’s not safe.” I said, “I’m not leaving her. I’ll sit in the front. What do you think I’m going to do? Jump out of the helicopter?” I think they realized there was no other option that I would agree to. I rode up front.
It was the fastest flight to the trauma center that I had ever experienced. They did a hot offload, meaning they didn’t even shut down the blades. We got her to the trauma center. And then it was a whole other layer of chaos.
Dr. Alison Delgado: Taylor’s presence may have delayed my transfer, but the University emergency department was prepped and waiting for me. Radiology was on hold, surgery and neurosurgery were there waiting. Everyone was in the trauma bay.
Dr. Taylor Delgado: My younger sister was a social worker in that emergency department, and she was on shift. She and my residency director went to CT with Ali. As the images from Ali’s CT scan showed up on the screens, everyone in the room gasped. She had a nonsurvivable head injury.
The AirCare 2 doctor collapsed into our director’s arms and cried: “She’s going to die tonight.” He responded: “I know. But we’ve got work to do.” Then he asked my sister how close she was with me. She told him we were extremely close. “Good, because we have to break the news that she’s going to die tonight.”
But the doctor never told me. I was in the consultation room. He came in and told me that she had a lot of bleeding around the brain, but he couldn’t find the words to tell me the true severity. He didn’t have to.
Dr. Alison Delgado: I was in a coma for 5 days. Shift by shift, they were amazed that I was still there. I had a broken jaw, broken vertebrae in my spine, a broken clavicle and sternum and contusions to my heart and lungs. I was later found to have a dissection of my carotid artery as well as an aneurysm to the carotid artery. These were both caused by the accident.
My jaw was wired shut and a tracheostomy was placed. They coiled the aneurysm and put a stent in the dissection. I was placed on dual antiplatelet therapy to prevent stent thrombosis.
When I initially woke from the coma during my hospital stay, I could not speak, but I remember being told why I was there. My first two thoughts were: Was it my fault? and I need to get back to work.
Two and a half weeks later, I was stable enough to go to an in-patient rehab facility.
I was very motivated. I made a lot of good progress, because Taylor was there with me. We looked through pictures, trying to jog my memory and help with my vocabulary. I’d look at a bird and know this is a flying animal but couldn’t think of the word bird. I couldn’t remember my mom’s name.
Dr. Taylor Delgado: She was becoming more fluent with her speech each day. Her right arm was working more normally. We started going on walks outside. Within 14 days she was discharged home.
When we left the rehab facility, I took a couple extra tracheostomy tubes and supplies, because I didn’t know how long Ali would have her trach. The emergency medicine person in me just thought, always have these things on hand.
A few days later, her ENT doctor decannulated her tracheostomy tube. In our minds, we were done.
The next night, she had the intracranial hemorrhage.
Return to the hospital ...
Dr. Taylor Delgado: The aneurysm they had coiled had ruptured. Ali had a recurrent subarachnoid hemorrhage and an intracranial hemorrhage, and she was still bleeding. So, they took her to IR to try to embolize it and accomplished as much as they possibly could.
She had hydrocephalus, the ventricles in her brain were enlarged. Normally, they would put in a drain, but they couldn’t because she was on aspirin and Plavix (clopidogrel). That would risk her having a bleed around that insertion site, which would cause a brain hemorrhage.
Dr. Alison Delgado: I was like a ticking time bomb. We knew I would have to have surgery as soon as possible to open my skull and clip the aneurysm. But I had to be on the Plavix and aspirin for at least 6 weeks before it would be considered safe to discontinue them. It was another 3 weeks before they could proceed with the surgery.
The second hospitalization was scarier than the first, because I was much more aware. I knew that I might not be able to return to my residency and do the thing I had dreamed of doing. There were risks of me becoming blind or paralyzed during the surgery. I might not even leave the hospital.
Dr. Taylor Delgado: It was mid-December by then, and my dad asked her, “Ali, what do you want for Christmas?” She looked at him deadpan and said, “normal brain.”
Dr. Alison Delgado: The surgery was successful. I went home a few days later. But I’d lost everything I had gained in rehabilitation. My speech was back to square one.
None of the doctors really expected me to go back to work. But from my standpoint, I thought, I could have died the day I was hit. I could have died when the aneurysm ruptured, or at any point along the way. But I’m here and I’m going back to work.
Dr. Taylor Delgado: In January, I went back to work and I had to fly on the helicopter. They were worried about how I would react. My flight director flew with me on my first shift. Our first flight was an inter-facility STEMI transfer. No big deal. The second one was a car accident outside of Batesville, Ind. We were in the back of the ambulance, and I looked at this woman. She was 27 years old, thin, with long hair. She looked exactly like Ali.
Ali flashed into my mind, and I was like, nope. Ali’s at home. She’s fine. This person is right here, right now. Do what you do. I intubated her in the helicopter. We gave her hypertonic saline. I started a blood transfusion. Afterward, my flight director came up to me and said: “You’re released back to full duty. That was the hardest test you could possibly have on your first day back flying, and you nailed it.”
Dr. Alison Delgado: I finished my residency in December of 2012 and passed my pediatric board exam on the first try, almost exactly 3 years after my accident.
The spring before I started medical school in 2005, I had won the Cincinnati Flying Pig marathon. In 2011, a few months after my accident, they invited us to be the starters of the race. When we stood at the starting line, I decided right then I was going to run this marathon again the next year. In spring 2012, I returned and finished in fourth place, beating my previous winning time by two minutes.
I have a different level of empathy for my patients now. I know what it’s like to be scared. I know what it’s like to not know if you’re going to leave the hospital. I’ve lived that. The process of writing my book was also cathartic for me. I told my story to try to give people hope.
Dr. Taylor Delgado: I have a tattoo on my wrist showing the date of Ali’s accident. The idea was to remind myself of what we’ve come through and everyone who went above and beyond. To show gratitude to them and remember everything that they did for us. It’s also to remember that every patient I see is somebody else’s Alison.
A version of this article first appeared on Medscape.com.
Dr. Taylor Delgado: It was Saturday night, and we had just gone to bed. Suddenly, Ali sat up, and screamed, “My head!” She then became nonresponsive and had a seizure. I was in disbelief, but I also knew exactly what was happening. I called 911: “My wife is having a head bleed. I need an ambulance.” It was a bad connection, and they could barely understand me.
As I tried to carry Ali downstairs, she vomited. She still had rubber bands in her mouth from the jaw fracture that was a result of her accident just a month ago. I knew she needed an airway.
I grabbed a tracheostomy tube, but the opening over her trachea put in for the accident had since closed. I tried to push the tube through her neck, but it hurt her; her eyes opened.
I thought to myself: Maybe she doesn’t need it. This can wait until she gets to the hospital. I can’t do this to her. But she vomited again, and I knew what I had to do.
We were at the top of our stairs. I didn’t have a blade or any other equipment, just the tracheostomy tube with the dilator. I pushed hard, and she started fighting me. I had to hold her hands away with one arm. The tube popped in and she stared back at me in pain and fear.
I finally got her downstairs and called medical control at University Hospital of Cincinnati. I was able to speak with one of the attendings: “Ali’s aneurysm ruptured, and she just had a seizure. She has a GCS of 11 or 12. I replaced her tracheostomy tube. We’ll be there shortly.”
When I heard sirens come down our street, I carried Ali outside, but the sirens were from a firetruck. They likely assumed someone had fallen and had a head laceration. It was beyond deflating. I yelled incredulously: “We need an ambulance here now!”
When the ambulance finally arrived, they tried to tell me that I could not ride with them. Or if I did, I would have to sit up front. After arguing back and forth for a few seconds, I finally demanded: “This is medical control. This is MD-88, and this is my patient. I’m sitting in back with you. She needs four Zofran and two midazolam IV now.”
One month earlier ...
Dr. Alison Delgado: Taylor and I were both 4 months into our second year of residency, and we had been married for 5 months. I was a pediatric resident at Cincinnati Children’s Hospital. She was an emergency medicine resident at the University Hospital. I was having my first day off in a couple weeks, and she was working a shift in the emergency department. She was also a part of the flight crew that day. Second-year residents would go out to the scenes of accidents or to other hospitals to transport the patient back to their Level I trauma center via helicopter. The resident was the physician and considered the leader on these flights.
That afternoon, I went for a bicycle ride. About three-quarters of the way through my ride, I was struck by a car.
The EMS crew got to me fairly quickly. They intubated me at the scene and got me to the closest hospital. Immediately, the hospital realized my case was outside the scope of their care. They contacted University Hospital requesting that their flight crew come to transport me.
Dr. Taylor Delgado: At around 5:30 p.m. the day of my shift, the tones went out on the radio: “AirCare 1 and Pod Doc, you are requested for interhospital transfer, 27-year-old Jane Doe, GCS 5.” That was the only information given.
When we landed at the hospital, I walked in with my nurse. I was listening to the doctor’s report and doing my once over. The patient was a little bit bradycardic, heart rate in the 40s or 50s. Blood pressure was normal if not a little bit elevated. There was obvious facial trauma. The endotracheal tube in place.
She was covered with a blanket, but some of her clothing was visible. Suddenly, I recognized it. It was our cycling team’s kit. I thought, please don’t let it be Ali.
My flight nurse went out and called back to dispatch. “This is my doc’s wife. Dispatch the second helicopter!” She had to repeat herself a few times before they understood what was happening.
As Ali’s spouse, I couldn’t be the flight doctor. I didn’t care. I called medical control myself and told them: “This is Ali. We have to fly her. She has a head injury.” They said: “You can’t fly her.” I said: “We can’t delay her care. I have to fly her.” They said: “No, you can’t fly her.” I broke down. Devastated.
I went back into the room and looked at Ali. Her heart rate was dropping. My flight nurse was in the trauma bay with the emergency physician. We realized definitive care was being delayed because of my presence, which was an awful feeling to have. I think at that point we realized, you do nothing, or you act. So, we acted.
I told my flight nurse: “Let’s give her atropine to increase her heart rate.” I asked about sedation, and she hadn’t had anything. I spurted off some doses: “a hundred of fentanyl and five of midazolam.” My flight nurse actually administered smaller doses. She thought it was a bit aggressive, and she was correct. I was trying to maintain composure, but it was hard.
The emergency medicine physician volunteered to fly with her, so I called back medical control in desperation: “This doctor’s willing to fly. Let him take her.”
They told me apologetically, knowing my agony, that he was not trained to fly and therefore could not do so. I sat down in the ambulance bay crying, waiting for the second helicopter to arrive.
When we got Ali onto AirCare 2, my nurse then told me I couldn’t fly with her. I said, “I’m flying with her.” She said, “no, it’s not safe.” I said, “I’m not leaving her. I’ll sit in the front. What do you think I’m going to do? Jump out of the helicopter?” I think they realized there was no other option that I would agree to. I rode up front.
It was the fastest flight to the trauma center that I had ever experienced. They did a hot offload, meaning they didn’t even shut down the blades. We got her to the trauma center. And then it was a whole other layer of chaos.
Dr. Alison Delgado: Taylor’s presence may have delayed my transfer, but the University emergency department was prepped and waiting for me. Radiology was on hold, surgery and neurosurgery were there waiting. Everyone was in the trauma bay.
Dr. Taylor Delgado: My younger sister was a social worker in that emergency department, and she was on shift. She and my residency director went to CT with Ali. As the images from Ali’s CT scan showed up on the screens, everyone in the room gasped. She had a nonsurvivable head injury.
The AirCare 2 doctor collapsed into our director’s arms and cried: “She’s going to die tonight.” He responded: “I know. But we’ve got work to do.” Then he asked my sister how close she was with me. She told him we were extremely close. “Good, because we have to break the news that she’s going to die tonight.”
But the doctor never told me. I was in the consultation room. He came in and told me that she had a lot of bleeding around the brain, but he couldn’t find the words to tell me the true severity. He didn’t have to.
Dr. Alison Delgado: I was in a coma for 5 days. Shift by shift, they were amazed that I was still there. I had a broken jaw, broken vertebrae in my spine, a broken clavicle and sternum and contusions to my heart and lungs. I was later found to have a dissection of my carotid artery as well as an aneurysm to the carotid artery. These were both caused by the accident.
My jaw was wired shut and a tracheostomy was placed. They coiled the aneurysm and put a stent in the dissection. I was placed on dual antiplatelet therapy to prevent stent thrombosis.
When I initially woke from the coma during my hospital stay, I could not speak, but I remember being told why I was there. My first two thoughts were: Was it my fault? and I need to get back to work.
Two and a half weeks later, I was stable enough to go to an in-patient rehab facility.
I was very motivated. I made a lot of good progress, because Taylor was there with me. We looked through pictures, trying to jog my memory and help with my vocabulary. I’d look at a bird and know this is a flying animal but couldn’t think of the word bird. I couldn’t remember my mom’s name.
Dr. Taylor Delgado: She was becoming more fluent with her speech each day. Her right arm was working more normally. We started going on walks outside. Within 14 days she was discharged home.
When we left the rehab facility, I took a couple extra tracheostomy tubes and supplies, because I didn’t know how long Ali would have her trach. The emergency medicine person in me just thought, always have these things on hand.
A few days later, her ENT doctor decannulated her tracheostomy tube. In our minds, we were done.
The next night, she had the intracranial hemorrhage.
Return to the hospital ...
Dr. Taylor Delgado: The aneurysm they had coiled had ruptured. Ali had a recurrent subarachnoid hemorrhage and an intracranial hemorrhage, and she was still bleeding. So, they took her to IR to try to embolize it and accomplished as much as they possibly could.
She had hydrocephalus, the ventricles in her brain were enlarged. Normally, they would put in a drain, but they couldn’t because she was on aspirin and Plavix (clopidogrel). That would risk her having a bleed around that insertion site, which would cause a brain hemorrhage.
Dr. Alison Delgado: I was like a ticking time bomb. We knew I would have to have surgery as soon as possible to open my skull and clip the aneurysm. But I had to be on the Plavix and aspirin for at least 6 weeks before it would be considered safe to discontinue them. It was another 3 weeks before they could proceed with the surgery.
The second hospitalization was scarier than the first, because I was much more aware. I knew that I might not be able to return to my residency and do the thing I had dreamed of doing. There were risks of me becoming blind or paralyzed during the surgery. I might not even leave the hospital.
Dr. Taylor Delgado: It was mid-December by then, and my dad asked her, “Ali, what do you want for Christmas?” She looked at him deadpan and said, “normal brain.”
Dr. Alison Delgado: The surgery was successful. I went home a few days later. But I’d lost everything I had gained in rehabilitation. My speech was back to square one.
None of the doctors really expected me to go back to work. But from my standpoint, I thought, I could have died the day I was hit. I could have died when the aneurysm ruptured, or at any point along the way. But I’m here and I’m going back to work.
Dr. Taylor Delgado: In January, I went back to work and I had to fly on the helicopter. They were worried about how I would react. My flight director flew with me on my first shift. Our first flight was an inter-facility STEMI transfer. No big deal. The second one was a car accident outside of Batesville, Ind. We were in the back of the ambulance, and I looked at this woman. She was 27 years old, thin, with long hair. She looked exactly like Ali.
Ali flashed into my mind, and I was like, nope. Ali’s at home. She’s fine. This person is right here, right now. Do what you do. I intubated her in the helicopter. We gave her hypertonic saline. I started a blood transfusion. Afterward, my flight director came up to me and said: “You’re released back to full duty. That was the hardest test you could possibly have on your first day back flying, and you nailed it.”
Dr. Alison Delgado: I finished my residency in December of 2012 and passed my pediatric board exam on the first try, almost exactly 3 years after my accident.
The spring before I started medical school in 2005, I had won the Cincinnati Flying Pig marathon. In 2011, a few months after my accident, they invited us to be the starters of the race. When we stood at the starting line, I decided right then I was going to run this marathon again the next year. In spring 2012, I returned and finished in fourth place, beating my previous winning time by two minutes.
I have a different level of empathy for my patients now. I know what it’s like to be scared. I know what it’s like to not know if you’re going to leave the hospital. I’ve lived that. The process of writing my book was also cathartic for me. I told my story to try to give people hope.
Dr. Taylor Delgado: I have a tattoo on my wrist showing the date of Ali’s accident. The idea was to remind myself of what we’ve come through and everyone who went above and beyond. To show gratitude to them and remember everything that they did for us. It’s also to remember that every patient I see is somebody else’s Alison.
A version of this article first appeared on Medscape.com.