Hospice & Palliative Medicine

In 1975, Julia and Joseph Quinlan approached the administrator of St. Clare’s Hospital in Denville, New Jersey, and requested that the mechanical ventilator on which their adopted daughter, Karen, was dependent be turned off. Karen Ann Quinlan, 21 years old, was in a permanent vegetative state after a severe anoxic event, and her parents had been informed by the hospital’s medical staff that she would never regain consciousness.

See related article

To the Quinlans’ request to withdraw the ventilator, the hospital administrator replied, “You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill people.”¹

The administrator’s response was consistent with prevailing ethical and legal perspectives, analyses, and directives at that time related to discontinuation of life-sustaining treatment. In the mid-1970s, the American Medical Association’s position was that it was permissible to not put a patient on a ventilator (ie, a physician could withhold a life-sustaining treatment), but once a patient was on a ventilator, it was not permissible to take the patient off if the intention was to allow death to occur.¹ However, the New Jersey Supreme Court ultimately found this distinction between withholding and withdrawing unconvincing, and ruled unanimously that Karen Quinlan’s ventilator could be turned off.²

THE HASTINGS CENTER REPORT: STOPPING IS THE SAME AS NOT STARTING

During the subsequent decade, further ethical analysis and additional legal cases resulted in new insights and more nuanced thinking about forgoing life-sustaining treatment.

These developments were summarized in a 1987 report by the Hastings Center,³ a leading bioethics research and policy institute. The report provided normative guidance for the termination of life-sustaining treatment and for the care of dying patients. It acknowledged that deciding not to start a life-sustaining treatment can emotionally and psychologically affect healthcare professionals differently than deciding to stop such a treatment. However, the report also asserted that there is no morally important difference between withholding and withdrawing such treatments.

There is no ethical requirement that treatment, once started, must continue against the patient’s wishes

Reflecting a partnership model between patients and professionals for healthcare decision-making, and affirming the ethical significance of both a burden-benefit analysis and patient autonomy, the report stated that when a patient or surrogate in collaboration with a responsible healthcare professional decides that a treatment under way and the life it supports have become more burdensome than beneficial to the patient, that is sufficient reason to stop. There is no ethical requirement that treatment, once initiated, must continue against the patient’s wishes or when the surrogate determines that it is more burdensome than beneficial from the patient’s perspective. In fact, imposing treatment in such circumstances violates the patient’s right to self-determination.³

The report noted further that, because of frequent uncertainty about the efficacy of proposed treatments, it is preferable to initiate time-limited trials of treatments and then later stop them if they prove ineffective or become overly burdensome from a patient’s perspective.

ICDs ARE LIKE OTHER LIFE-SUSTAINING THERAPIES

In this issue of Cleveland Clinic Journal of Medicine, Baibars et al⁴ address the question of how implantable cardioverter-defibrillators (ICDs) should be managed at the end of life. The historical events and developments recounted above regarding withdrawing life-sustaining technologies are an appropriate context for ethically assessing the management of ICDs for dying patients.

ICDs are not ventilators, but like ventilators, they are a life-sustaining therapy

Obviously, ICDs are not ventilators, but like ventilators, they are life-sustaining therapy, as are dialysis machines, blood transfusions, medically supplied nutrition and hydration, ventricular assist devices, and other implantable electronic cardiac devices such as pacemakers. Each of these life-sustaining therapies, depending on a patient’s clinical condition, underlying illness, and comorbidities, can become a death-prolonging technology.

An ethical framework and analysis about whether to continue any life-sustaining therapy, including an ICD, must include an assessment of the benefit-to-burden ratio from the patient’s perspective. Does the therapy enhance or maintain a quality of life acceptable to the patient? Or has it become overly burdensome and does it maintain a quality of life the patient finds (or would find) unacceptable? If the latter is true, and especially in the context of an underlying terminal condition, then shifting the goals of care to focus on comfort is always appropriate and ethically justified. Treatments—including ICDs—that do not contribute to patient comfort should be withdrawn.

TOWARD COMPETENCY IN ETHICAL MANAGEMENT

Baibars et al note that much more needs to be done to enhance competencies, increase proficiencies, and mitigate the moral distress of healthcare professionals caring for dying patients with ICDs and other devices. To help clinicians achieve a personal and professional “comfort zone” for ethically managing patients with ICDs, we recommend that healthcare institutions, medical schools, and nursing schools take the following steps:

Develop comprehensive end-of-life policies, procedures, and protocols that incorporate specific guidance for managing cardiac devices and that have been endorsed by a hospital ethics committee. Such guidance can be informative and educational and can ensure that decisions and resulting actions (including stopping cardiac devices) are ethically supportable.

Provide more palliative care training in medical and nursing schools, residency programs, and continuing education activities so that front-line clinicians can deliver “basic,” “primary” palliative care not requiring specialty palliative medicine. This training, called for in the Institute of Medicine’s 2014 report, Dying in America,⁵ should include explicit ethics discussions about managing cardiac devices at the end of life.

Provide ongoing training in communication skills needed for all patient-professional encounters. Effectively engaging patients in goals-of-care discussions, especially patients with life-limiting illnesses such as heart failure, cannot be achieved without these skills.

In 1975, Julia and Joseph Quinlan approached the administrator of St. Clare’s Hospital in Denville, New Jersey, and requested that the mechanical ventilator on which their adopted daughter, Karen, was dependent be turned off. Karen Ann Quinlan, 21 years old, was in a permanent vegetative state after a severe anoxic event, and her parents had been informed by the hospital’s medical staff that she would never regain consciousness.

See related article

To the Quinlans’ request to withdraw the ventilator, the hospital administrator replied, “You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill people.”¹

The administrator’s response was consistent with prevailing ethical and legal perspectives, analyses, and directives at that time related to discontinuation of life-sustaining treatment. In the mid-1970s, the American Medical Association’s position was that it was permissible to not put a patient on a ventilator (ie, a physician could withhold a life-sustaining treatment), but once a patient was on a ventilator, it was not permissible to take the patient off if the intention was to allow death to occur.¹ However, the New Jersey Supreme Court ultimately found this distinction between withholding and withdrawing unconvincing, and ruled unanimously that Karen Quinlan’s ventilator could be turned off.²

THE HASTINGS CENTER REPORT: STOPPING IS THE SAME AS NOT STARTING

During the subsequent decade, further ethical analysis and additional legal cases resulted in new insights and more nuanced thinking about forgoing life-sustaining treatment.

These developments were summarized in a 1987 report by the Hastings Center,³ a leading bioethics research and policy institute. The report provided normative guidance for the termination of life-sustaining treatment and for the care of dying patients. It acknowledged that deciding not to start a life-sustaining treatment can emotionally and psychologically affect healthcare professionals differently than deciding to stop such a treatment. However, the report also asserted that there is no morally important difference between withholding and withdrawing such treatments.

There is no ethical requirement that treatment, once started, must continue against the patient’s wishes

Reflecting a partnership model between patients and professionals for healthcare decision-making, and affirming the ethical significance of both a burden-benefit analysis and patient autonomy, the report stated that when a patient or surrogate in collaboration with a responsible healthcare professional decides that a treatment under way and the life it supports have become more burdensome than beneficial to the patient, that is sufficient reason to stop. There is no ethical requirement that treatment, once initiated, must continue against the patient’s wishes or when the surrogate determines that it is more burdensome than beneficial from the patient’s perspective. In fact, imposing treatment in such circumstances violates the patient’s right to self-determination.³

The report noted further that, because of frequent uncertainty about the efficacy of proposed treatments, it is preferable to initiate time-limited trials of treatments and then later stop them if they prove ineffective or become overly burdensome from a patient’s perspective.

ICDs ARE LIKE OTHER LIFE-SUSTAINING THERAPIES

In this issue of Cleveland Clinic Journal of Medicine, Baibars et al⁴ address the question of how implantable cardioverter-defibrillators (ICDs) should be managed at the end of life. The historical events and developments recounted above regarding withdrawing life-sustaining technologies are an appropriate context for ethically assessing the management of ICDs for dying patients.

ICDs are not ventilators, but like ventilators, they are a life-sustaining therapy

Obviously, ICDs are not ventilators, but like ventilators, they are life-sustaining therapy, as are dialysis machines, blood transfusions, medically supplied nutrition and hydration, ventricular assist devices, and other implantable electronic cardiac devices such as pacemakers. Each of these life-sustaining therapies, depending on a patient’s clinical condition, underlying illness, and comorbidities, can become a death-prolonging technology.

An ethical framework and analysis about whether to continue any life-sustaining therapy, including an ICD, must include an assessment of the benefit-to-burden ratio from the patient’s perspective. Does the therapy enhance or maintain a quality of life acceptable to the patient? Or has it become overly burdensome and does it maintain a quality of life the patient finds (or would find) unacceptable? If the latter is true, and especially in the context of an underlying terminal condition, then shifting the goals of care to focus on comfort is always appropriate and ethically justified. Treatments—including ICDs—that do not contribute to patient comfort should be withdrawn.

TOWARD COMPETENCY IN ETHICAL MANAGEMENT

Baibars et al note that much more needs to be done to enhance competencies, increase proficiencies, and mitigate the moral distress of healthcare professionals caring for dying patients with ICDs and other devices. To help clinicians achieve a personal and professional “comfort zone” for ethically managing patients with ICDs, we recommend that healthcare institutions, medical schools, and nursing schools take the following steps:

Develop comprehensive end-of-life policies, procedures, and protocols that incorporate specific guidance for managing cardiac devices and that have been endorsed by a hospital ethics committee. Such guidance can be informative and educational and can ensure that decisions and resulting actions (including stopping cardiac devices) are ethically supportable.

Provide more palliative care training in medical and nursing schools, residency programs, and continuing education activities so that front-line clinicians can deliver “basic,” “primary” palliative care not requiring specialty palliative medicine. This training, called for in the Institute of Medicine’s 2014 report, Dying in America,⁵ should include explicit ethics discussions about managing cardiac devices at the end of life.

Provide ongoing training in communication skills needed for all patient-professional encounters. Effectively engaging patients in goals-of-care discussions, especially patients with life-limiting illnesses such as heart failure, cannot be achieved without these skills.

In 1975, Julia and Joseph Quinlan approached the administrator of St. Clare’s Hospital in Denville, New Jersey, and requested that the mechanical ventilator on which their adopted daughter, Karen, was dependent be turned off. Karen Ann Quinlan, 21 years old, was in a permanent vegetative state after a severe anoxic event, and her parents had been informed by the hospital’s medical staff that she would never regain consciousness.

See related article

To the Quinlans’ request to withdraw the ventilator, the hospital administrator replied, “You have to understand our position, Mrs. Quinlan. In this hospital we don’t kill people.”¹

The administrator’s response was consistent with prevailing ethical and legal perspectives, analyses, and directives at that time related to discontinuation of life-sustaining treatment. In the mid-1970s, the American Medical Association’s position was that it was permissible to not put a patient on a ventilator (ie, a physician could withhold a life-sustaining treatment), but once a patient was on a ventilator, it was not permissible to take the patient off if the intention was to allow death to occur.¹ However, the New Jersey Supreme Court ultimately found this distinction between withholding and withdrawing unconvincing, and ruled unanimously that Karen Quinlan’s ventilator could be turned off.²

THE HASTINGS CENTER REPORT: STOPPING IS THE SAME AS NOT STARTING

During the subsequent decade, further ethical analysis and additional legal cases resulted in new insights and more nuanced thinking about forgoing life-sustaining treatment.

These developments were summarized in a 1987 report by the Hastings Center,³ a leading bioethics research and policy institute. The report provided normative guidance for the termination of life-sustaining treatment and for the care of dying patients. It acknowledged that deciding not to start a life-sustaining treatment can emotionally and psychologically affect healthcare professionals differently than deciding to stop such a treatment. However, the report also asserted that there is no morally important difference between withholding and withdrawing such treatments.

There is no ethical requirement that treatment, once started, must continue against the patient’s wishes

Reflecting a partnership model between patients and professionals for healthcare decision-making, and affirming the ethical significance of both a burden-benefit analysis and patient autonomy, the report stated that when a patient or surrogate in collaboration with a responsible healthcare professional decides that a treatment under way and the life it supports have become more burdensome than beneficial to the patient, that is sufficient reason to stop. There is no ethical requirement that treatment, once initiated, must continue against the patient’s wishes or when the surrogate determines that it is more burdensome than beneficial from the patient’s perspective. In fact, imposing treatment in such circumstances violates the patient’s right to self-determination.³

The report noted further that, because of frequent uncertainty about the efficacy of proposed treatments, it is preferable to initiate time-limited trials of treatments and then later stop them if they prove ineffective or become overly burdensome from a patient’s perspective.

ICDs ARE LIKE OTHER LIFE-SUSTAINING THERAPIES

In this issue of Cleveland Clinic Journal of Medicine, Baibars et al⁴ address the question of how implantable cardioverter-defibrillators (ICDs) should be managed at the end of life. The historical events and developments recounted above regarding withdrawing life-sustaining technologies are an appropriate context for ethically assessing the management of ICDs for dying patients.

ICDs are not ventilators, but like ventilators, they are a life-sustaining therapy

Obviously, ICDs are not ventilators, but like ventilators, they are life-sustaining therapy, as are dialysis machines, blood transfusions, medically supplied nutrition and hydration, ventricular assist devices, and other implantable electronic cardiac devices such as pacemakers. Each of these life-sustaining therapies, depending on a patient’s clinical condition, underlying illness, and comorbidities, can become a death-prolonging technology.

An ethical framework and analysis about whether to continue any life-sustaining therapy, including an ICD, must include an assessment of the benefit-to-burden ratio from the patient’s perspective. Does the therapy enhance or maintain a quality of life acceptable to the patient? Or has it become overly burdensome and does it maintain a quality of life the patient finds (or would find) unacceptable? If the latter is true, and especially in the context of an underlying terminal condition, then shifting the goals of care to focus on comfort is always appropriate and ethically justified. Treatments—including ICDs—that do not contribute to patient comfort should be withdrawn.

TOWARD COMPETENCY IN ETHICAL MANAGEMENT

Baibars et al note that much more needs to be done to enhance competencies, increase proficiencies, and mitigate the moral distress of healthcare professionals caring for dying patients with ICDs and other devices. To help clinicians achieve a personal and professional “comfort zone” for ethically managing patients with ICDs, we recommend that healthcare institutions, medical schools, and nursing schools take the following steps:

Develop comprehensive end-of-life policies, procedures, and protocols that incorporate specific guidance for managing cardiac devices and that have been endorsed by a hospital ethics committee. Such guidance can be informative and educational and can ensure that decisions and resulting actions (including stopping cardiac devices) are ethically supportable.

Provide more palliative care training in medical and nursing schools, residency programs, and continuing education activities so that front-line clinicians can deliver “basic,” “primary” palliative care not requiring specialty palliative medicine. This training, called for in the Institute of Medicine’s 2014 report, Dying in America,⁵ should include explicit ethics discussions about managing cardiac devices at the end of life.

Provide ongoing training in communication skills needed for all patient-professional encounters. Effectively engaging patients in goals-of-care discussions, especially patients with life-limiting illnesses such as heart failure, cannot be achieved without these skills.

Yes. Although implantable cardioverter-defibrillators (ICDs) prevent sudden cardiac death in patients with advanced heart failure, their benefit in terminally ill patients is small.¹ Furthermore, the shocks they deliver at the end of life can cause distress. Therefore, it is reasonable to consider ICD deactivation if the patient or family wishes.

See related commentary

A DIFFICULT DECISION

End-of-life decisions place significant emotional burdens on patients, their families, and their healthcare providers and can have social and legal consequences.

Turning off an ICD is an especially difficult decision, considering that these devices protect against sudden cardiac death and fatal arrhythmias. Also, patients and their representatives may find it more difficult to withdraw from active care than to forgo further interventions (more on this below), and they may misunderstand discussions about ICD deactivation, perceiving them as the beginning of abandonment.

ICD DEACTIVATION IS OFTEN DONE HAPHAZARDLY OR NOT AT ALL

Many healthcare providers are not trained in or comfortable with discussing end-of-life issues, and many hospitals and hospice programs lack policies and protocols for managing implanted devices at the end of life. Consequently, ICD management at the end of life varies among providers and tends to be suboptimal.²

In a report of a survey in 414 hospice facilities, 97% of facilities reported that they admitted patients with ICDs, but only 10% had a policy on device deactivation.³

In a survey of 47 European medical centers, only 4% said they addressed ICD deactivation with their patients.⁴

A study of 125 patients with ICDs who had died found that 52% had do-not-resuscitate orders. Nevertheless, in 100 patients the ICD had remained active in the last 24 hours of their life, and 31 of these patients had received shocks during their last 24 hours.⁵

In a survey of next of kin of patients with ICDs who had died of any cause,⁶ in only 27 of 100 cases had the clinician discussed ICD deactivation, and about three-fourths of these discussions had occurred during the last few days of life. Twenty-seven patients had received ICD discharges in the last month of life, and 8% had received a discharge during the final minutes.

TRAINING AND PROTOCOLS ARE NEEDED

Healthcare professionals need education about device deactivation at the end of life so that they are comfortable communicating with patients and families about this critical issue. To this end, several cardiac and palliative care societies have jointly released an expert statement on managing ICDs and other implantable devices in end-of-life situations.⁷

Many providers harbor a misunderstanding of the difference between withholding a device and withdrawing (or turning off) a device that is already implanted.² Some mistakenly believe they would be committing a crime by deactivating an implanted life-sustaining device. Legally and ethically, there is no difference between withholding a device and withdrawing a device. Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.

DISCUSSION SHOULD BEGIN EARLY AND SHOULD BE ONGOING

The discussion of ICD deactivation should begin before the device is implanted and should continue as the patient’s health status changes. In a survey, 40% of patients said they felt that ICD deactivation should be discussed before the device is implanted, and only 5% felt that this discussion should be undertaken in the last days of life.⁸

At the least, it is important to identify patients with ICDs on admission to hospice and to have policies in place that ensure adequate patient education to make an informed decision about ICD deactivation at the end of life.

The topic should be discussed when goals of care change and when do-not-resuscitate status is addressed, and also when advanced directives are being acknowledged. If the patient or his or her legal representative wishes to keep the ICD turned on, that wish should be respected. The essence of a discussion is not to impose the providers’ choice on the patient, but to help the patient make the right decision for himself or herself. Of note, patients entering hospice do not have to have do-not-resuscitate status.

We believe that device management in end-of-life circumstances should be part of the discussion of the goals of care. Accordingly, healthcare providers need to be familiar with device management and to have a higher comfort level in addressing such sensitive topics with patients facing the end of life, as well as with their families.

It is also advisable to apply protocols within hospice services to address ICD management options for the patient and the legal representative. An early decision regarding end-of-life deactivation will help patients avoid distressing ICD discharges and the related emotional distress in their last moments.

Yes. Although implantable cardioverter-defibrillators (ICDs) prevent sudden cardiac death in patients with advanced heart failure, their benefit in terminally ill patients is small.¹ Furthermore, the shocks they deliver at the end of life can cause distress. Therefore, it is reasonable to consider ICD deactivation if the patient or family wishes.

See related commentary

A DIFFICULT DECISION

End-of-life decisions place significant emotional burdens on patients, their families, and their healthcare providers and can have social and legal consequences.

Turning off an ICD is an especially difficult decision, considering that these devices protect against sudden cardiac death and fatal arrhythmias. Also, patients and their representatives may find it more difficult to withdraw from active care than to forgo further interventions (more on this below), and they may misunderstand discussions about ICD deactivation, perceiving them as the beginning of abandonment.

ICD DEACTIVATION IS OFTEN DONE HAPHAZARDLY OR NOT AT ALL

Many healthcare providers are not trained in or comfortable with discussing end-of-life issues, and many hospitals and hospice programs lack policies and protocols for managing implanted devices at the end of life. Consequently, ICD management at the end of life varies among providers and tends to be suboptimal.²

In a report of a survey in 414 hospice facilities, 97% of facilities reported that they admitted patients with ICDs, but only 10% had a policy on device deactivation.³

In a survey of 47 European medical centers, only 4% said they addressed ICD deactivation with their patients.⁴

A study of 125 patients with ICDs who had died found that 52% had do-not-resuscitate orders. Nevertheless, in 100 patients the ICD had remained active in the last 24 hours of their life, and 31 of these patients had received shocks during their last 24 hours.⁵

In a survey of next of kin of patients with ICDs who had died of any cause,⁶ in only 27 of 100 cases had the clinician discussed ICD deactivation, and about three-fourths of these discussions had occurred during the last few days of life. Twenty-seven patients had received ICD discharges in the last month of life, and 8% had received a discharge during the final minutes.

TRAINING AND PROTOCOLS ARE NEEDED

Healthcare professionals need education about device deactivation at the end of life so that they are comfortable communicating with patients and families about this critical issue. To this end, several cardiac and palliative care societies have jointly released an expert statement on managing ICDs and other implantable devices in end-of-life situations.⁷

Many providers harbor a misunderstanding of the difference between withholding a device and withdrawing (or turning off) a device that is already implanted.² Some mistakenly believe they would be committing a crime by deactivating an implanted life-sustaining device. Legally and ethically, there is no difference between withholding a device and withdrawing a device. Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.

DISCUSSION SHOULD BEGIN EARLY AND SHOULD BE ONGOING

The discussion of ICD deactivation should begin before the device is implanted and should continue as the patient’s health status changes. In a survey, 40% of patients said they felt that ICD deactivation should be discussed before the device is implanted, and only 5% felt that this discussion should be undertaken in the last days of life.⁸

At the least, it is important to identify patients with ICDs on admission to hospice and to have policies in place that ensure adequate patient education to make an informed decision about ICD deactivation at the end of life.

The topic should be discussed when goals of care change and when do-not-resuscitate status is addressed, and also when advanced directives are being acknowledged. If the patient or his or her legal representative wishes to keep the ICD turned on, that wish should be respected. The essence of a discussion is not to impose the providers’ choice on the patient, but to help the patient make the right decision for himself or herself. Of note, patients entering hospice do not have to have do-not-resuscitate status.

We believe that device management in end-of-life circumstances should be part of the discussion of the goals of care. Accordingly, healthcare providers need to be familiar with device management and to have a higher comfort level in addressing such sensitive topics with patients facing the end of life, as well as with their families.

It is also advisable to apply protocols within hospice services to address ICD management options for the patient and the legal representative. An early decision regarding end-of-life deactivation will help patients avoid distressing ICD discharges and the related emotional distress in their last moments.

Yes. Although implantable cardioverter-defibrillators (ICDs) prevent sudden cardiac death in patients with advanced heart failure, their benefit in terminally ill patients is small.¹ Furthermore, the shocks they deliver at the end of life can cause distress. Therefore, it is reasonable to consider ICD deactivation if the patient or family wishes.

See related commentary

A DIFFICULT DECISION

End-of-life decisions place significant emotional burdens on patients, their families, and their healthcare providers and can have social and legal consequences.

Turning off an ICD is an especially difficult decision, considering that these devices protect against sudden cardiac death and fatal arrhythmias. Also, patients and their representatives may find it more difficult to withdraw from active care than to forgo further interventions (more on this below), and they may misunderstand discussions about ICD deactivation, perceiving them as the beginning of abandonment.

ICD DEACTIVATION IS OFTEN DONE HAPHAZARDLY OR NOT AT ALL

Many healthcare providers are not trained in or comfortable with discussing end-of-life issues, and many hospitals and hospice programs lack policies and protocols for managing implanted devices at the end of life. Consequently, ICD management at the end of life varies among providers and tends to be suboptimal.²

In a report of a survey in 414 hospice facilities, 97% of facilities reported that they admitted patients with ICDs, but only 10% had a policy on device deactivation.³

In a survey of 47 European medical centers, only 4% said they addressed ICD deactivation with their patients.⁴

A study of 125 patients with ICDs who had died found that 52% had do-not-resuscitate orders. Nevertheless, in 100 patients the ICD had remained active in the last 24 hours of their life, and 31 of these patients had received shocks during their last 24 hours.⁵

In a survey of next of kin of patients with ICDs who had died of any cause,⁶ in only 27 of 100 cases had the clinician discussed ICD deactivation, and about three-fourths of these discussions had occurred during the last few days of life. Twenty-seven patients had received ICD discharges in the last month of life, and 8% had received a discharge during the final minutes.

TRAINING AND PROTOCOLS ARE NEEDED

Healthcare professionals need education about device deactivation at the end of life so that they are comfortable communicating with patients and families about this critical issue. To this end, several cardiac and palliative care societies have jointly released an expert statement on managing ICDs and other implantable devices in end-of-life situations.⁷

Many providers harbor a misunderstanding of the difference between withholding a device and withdrawing (or turning off) a device that is already implanted.² Some mistakenly believe they would be committing a crime by deactivating an implanted life-sustaining device. Legally and ethically, there is no difference between withholding a device and withdrawing a device. Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.

DISCUSSION SHOULD BEGIN EARLY AND SHOULD BE ONGOING

The discussion of ICD deactivation should begin before the device is implanted and should continue as the patient’s health status changes. In a survey, 40% of patients said they felt that ICD deactivation should be discussed before the device is implanted, and only 5% felt that this discussion should be undertaken in the last days of life.⁸

At the least, it is important to identify patients with ICDs on admission to hospice and to have policies in place that ensure adequate patient education to make an informed decision about ICD deactivation at the end of life.

The topic should be discussed when goals of care change and when do-not-resuscitate status is addressed, and also when advanced directives are being acknowledged. If the patient or his or her legal representative wishes to keep the ICD turned on, that wish should be respected. The essence of a discussion is not to impose the providers’ choice on the patient, but to help the patient make the right decision for himself or herself. Of note, patients entering hospice do not have to have do-not-resuscitate status.

We believe that device management in end-of-life circumstances should be part of the discussion of the goals of care. Accordingly, healthcare providers need to be familiar with device management and to have a higher comfort level in addressing such sensitive topics with patients facing the end of life, as well as with their families.

It is also advisable to apply protocols within hospice services to address ICD management options for the patient and the legal representative. An early decision regarding end-of-life deactivation will help patients avoid distressing ICD discharges and the related emotional distress in their last moments.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Dr. Paul Kalanithi, a neurosurgeon who had just completed his residency at the Stanford (Calif.) University, died of metastatic lung cancer last year, but he left a memoir of his experiences as a physician, a patient, and a dying man that was published on Jan. 12. His book, “When Breath Becomes Air” (New York: Random House, 2016), recounts the many years of working to exhaustion and deferring of life experiences and pleasures that are necessary to complete medical training.

Courtney Amazon.com

In a review of the book, Janet Maslin wrote, “One of the most poignant things about Dr. Kalanithi’s story is that he had postponed learning how to live while pursuing his career in neurosurgery. By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die.”

Dr. Kalanithi reflected on the profound grief and sense of loss that comes with a diagnosis that he knew meant imminent death. The memoir also reveals his search for meaning and joy, and finally, his acceptance of mortality. He opted for palliative care and his memoir, along with the epilogue written by his wife, Dr. Lucy Kalanithi, gives insight into the value of the palliative path to patients and their families in dire medical crises.

Dr. Paul Kalanithi, a neurosurgeon who had just completed his residency at the Stanford (Calif.) University, died of metastatic lung cancer last year, but he left a memoir of his experiences as a physician, a patient, and a dying man that was published on Jan. 12. His book, “When Breath Becomes Air” (New York: Random House, 2016), recounts the many years of working to exhaustion and deferring of life experiences and pleasures that are necessary to complete medical training.

Courtney Amazon.com

In a review of the book, Janet Maslin wrote, “One of the most poignant things about Dr. Kalanithi’s story is that he had postponed learning how to live while pursuing his career in neurosurgery. By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die.”

Dr. Kalanithi reflected on the profound grief and sense of loss that comes with a diagnosis that he knew meant imminent death. The memoir also reveals his search for meaning and joy, and finally, his acceptance of mortality. He opted for palliative care and his memoir, along with the epilogue written by his wife, Dr. Lucy Kalanithi, gives insight into the value of the palliative path to patients and their families in dire medical crises.

Dr. Paul Kalanithi, a neurosurgeon who had just completed his residency at the Stanford (Calif.) University, died of metastatic lung cancer last year, but he left a memoir of his experiences as a physician, a patient, and a dying man that was published on Jan. 12. His book, “When Breath Becomes Air” (New York: Random House, 2016), recounts the many years of working to exhaustion and deferring of life experiences and pleasures that are necessary to complete medical training.

Courtney Amazon.com

In a review of the book, Janet Maslin wrote, “One of the most poignant things about Dr. Kalanithi’s story is that he had postponed learning how to live while pursuing his career in neurosurgery. By the time he was ready to enjoy a life outside the operating room, what he needed to learn was how to die.”

Dr. Kalanithi reflected on the profound grief and sense of loss that comes with a diagnosis that he knew meant imminent death. The memoir also reveals his search for meaning and joy, and finally, his acceptance of mortality. He opted for palliative care and his memoir, along with the epilogue written by his wife, Dr. Lucy Kalanithi, gives insight into the value of the palliative path to patients and their families in dire medical crises.

The death of David Bowie, iconic musician and artist, on Jan. 10 inspired palliative care specialist Dr. Mark Taubert to write a blog about end-of-life scenarios and the importance of advance care planning. The blog, which begins by thanking Mr. Bowie for his many artistic contributions, continues by suggesting that his planned death at home will inspire many people in similar health crises to consider palliative care. The palliative care conversation between a doctor and a patient facing death can be challenging but can lead to what Dr. Taubert called “a good death” at home with symptoms managed and loved ones nearby. Mr. Bowie’s son, Duncan Jones, tweeted a link to the blog in the days after his father’s death.

Courtesy Jorge Barrios/Wikimedia Creative Commons License

Dr. Taubert found himself speaking with a patient who was facing probable death in the near future, and both doctor and patient found inspiration in Mr. Bowie’s final music project and his death at home with his family. Dr. Taubert and his patient were able to have the conversation about palliative care at end-of-life in part because they were both impressed with what Mr. Bowie was able to achieve in his last months. “Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” he wrote.

Dr. Taubert of the Velindre NHS Trust in Cardiff, Wales, noted that, although palliative care is a highly developed skill with many resources to help patients at the end of life, “this essential part of training is not always available for junior healthcare professionals, including doctors and nurses, and is sometimes overlooked or under-prioritized by those who plan their education. I think if you [David Bowie] were ever to return (as Lazarus did), you would be a firm advocate for good palliative care training being available everywhere.”

The death of David Bowie, iconic musician and artist, on Jan. 10 inspired palliative care specialist Dr. Mark Taubert to write a blog about end-of-life scenarios and the importance of advance care planning. The blog, which begins by thanking Mr. Bowie for his many artistic contributions, continues by suggesting that his planned death at home will inspire many people in similar health crises to consider palliative care. The palliative care conversation between a doctor and a patient facing death can be challenging but can lead to what Dr. Taubert called “a good death” at home with symptoms managed and loved ones nearby. Mr. Bowie’s son, Duncan Jones, tweeted a link to the blog in the days after his father’s death.

Courtesy Jorge Barrios/Wikimedia Creative Commons License

Dr. Taubert found himself speaking with a patient who was facing probable death in the near future, and both doctor and patient found inspiration in Mr. Bowie’s final music project and his death at home with his family. Dr. Taubert and his patient were able to have the conversation about palliative care at end-of-life in part because they were both impressed with what Mr. Bowie was able to achieve in his last months. “Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” he wrote.

Dr. Taubert of the Velindre NHS Trust in Cardiff, Wales, noted that, although palliative care is a highly developed skill with many resources to help patients at the end of life, “this essential part of training is not always available for junior healthcare professionals, including doctors and nurses, and is sometimes overlooked or under-prioritized by those who plan their education. I think if you [David Bowie] were ever to return (as Lazarus did), you would be a firm advocate for good palliative care training being available everywhere.”

The death of David Bowie, iconic musician and artist, on Jan. 10 inspired palliative care specialist Dr. Mark Taubert to write a blog about end-of-life scenarios and the importance of advance care planning. The blog, which begins by thanking Mr. Bowie for his many artistic contributions, continues by suggesting that his planned death at home will inspire many people in similar health crises to consider palliative care. The palliative care conversation between a doctor and a patient facing death can be challenging but can lead to what Dr. Taubert called “a good death” at home with symptoms managed and loved ones nearby. Mr. Bowie’s son, Duncan Jones, tweeted a link to the blog in the days after his father’s death.

Courtesy Jorge Barrios/Wikimedia Creative Commons License

Dr. Taubert found himself speaking with a patient who was facing probable death in the near future, and both doctor and patient found inspiration in Mr. Bowie’s final music project and his death at home with his family. Dr. Taubert and his patient were able to have the conversation about palliative care at end-of-life in part because they were both impressed with what Mr. Bowie was able to achieve in his last months. “Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” he wrote.

Dr. Taubert of the Velindre NHS Trust in Cardiff, Wales, noted that, although palliative care is a highly developed skill with many resources to help patients at the end of life, “this essential part of training is not always available for junior healthcare professionals, including doctors and nurses, and is sometimes overlooked or under-prioritized by those who plan their education. I think if you [David Bowie] were ever to return (as Lazarus did), you would be a firm advocate for good palliative care training being available everywhere.”

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

Bereaved families were substantially more satisfied with end-of-life cancer care when patients did not die in hospital, received more than 3 days of hospice care, and did not enter the ICU within 30 days of dying, according to a multicenter, prospective study published online Jan. 19 in JAMA.

The analysis is one of the first of its type to assess these end-of-life care indicators, said Dr. Alexi Wright of Harvard Medical School, Boston, and her associates. The findings could affect health policy as electronic health records expand under the Health Information Technology for Economic and Clinical Health Act, they said.

End-of-life cancer care has become increasingly aggressive, belying evidence that this approach does not improve patient outcomes, quality of life, or caregiver bereavement. To explore alternatives, the researchers analyzed 1,146 interviews of family members of Medicare patients who died of lung or colorectal cancer by 2011. Their data source was the multiregional, prospective, observational Cancer Care Outcomes Research and Surveillance (CanCORS) study (JAMA 2016;315:284-92).

Marcin Moryc/Thinkstock.com

Family members described end-of-life care as “excellent” 59% of the time when hospice care lasted more 3 days, but 43% of the time otherwise (95% confidence interval for adjusted difference, 11% to 22%). Notably, 73% of patients who received more than 3 days of hospice care died in their preferred location, compared with 40% of patients who received less or no hospice care. Care was rated as excellent 52% of the time when ICU admission was avoided within 30 days of death, and 57% of the time when patients died outside the hospital, compared with 45% and 42% of the time otherwise.

The results support “advance care planning consistent with the preferences of patients,” said the investigators. They recommended more extensive counseling of cancer patients and families, earlier palliative care referrals, and an audit and feedback system to monitor the use of aggressive end­-of-­life care.

The National Cancer Institute and the Cancer Care Outcomes Research and Surveillance Consortium funded the study. One coinvestigator reported financial relationships with the American Academy of Hospice and Palliative Medicine, National Institute of Nursing Research, National Institute on Aging, Retirement Research Retirement Foundation, California Healthcare Foundation, Commonwealth Fund, West Health Institute, University of Wisconsin, and UpToDate.com. Senior author Dr. Mary Landrum, also of Harvard Medical School, reported grant funding from Pfizer and personal fees from McKinsey and Company and Greylock McKinnon Associates. The other authors had no disclosures.

The juxtaposition between my first 2 days of neurosurgery could not have been more profound. On my first day as a third-year medical student, the attending and chief resident let me take the lead on the first case: a straightforward brain biopsy. I got to make the incision, drill the burr hole, and perform the needle biopsy. I still remember the thrill of the technical challenge, the controlled violence of drilling into the skull, and the finesse of accessing the tumor core.

The buzz was so strong that I barely registered the diagnosis that was called back from the pathologist: glioblastoma. It was not until I saw the face of the disease the next morning that I understood the reality of a GBM diagnosis. That face belonged to a 47-year-old man who hadn’t slept all night, wide eyed with apprehension at what news I might bring. He beseeched me with questions, and though his aphasia left him stammering to get the words out, I knew exactly what he was asking: Would he live or die? It was a question I was in no position to answer. Instead, I reassured him that we were waiting on the final pathology, all the while trying to forget the fact that the frozen section suggested an aggressive subtype, surely heralding a poor prognosis.

In his poignant memoir, “Do No Harm: Stories of Life, Death and Brain Surgery” (New York: Thomas Dunne Book, 2015), Dr. Henry Marsh writes beautifully about how difficult it can be to find the balance between optimism and realism.  In one memorable passage, Dr. Marsh shows a house officer a scan of a highly malignant brain tumor and asks him what he would say to the patient. The trainee reflexively hides behind jargon, skirting around what he knew to be the truth: This tumor would kill her. Marsh presses him to admit that he’s lying, before lamenting at how hard it is to improve these critical communication skills: “When I have had to break bad news I never know whether I have done it well or not. The patients aren’t going to ring me up afterward and say, ‘Mr. Marsh, I really liked the way you told me that I was going to die,’ or ‘Mr. Marsh, you were crap.’ You can only hope that you haven’t made too much of a mess of it.”

I could certainly relate to Dr. Marsh’s house officer as I walked away from my own patient. I felt almost deceitful withholding diagnostic information from him, even if I did the “right” thing. It made me wonder, why did I want to become a neurosurgeon? Surely to help people through some of the most difficult moments of their lives. But is it possible to be a source of comfort when you are required so often to be a harbinger of death? The answer depends on whether one can envision a role for the neurosurgeon beyond the mandate of “life at all costs.”

While the field has become known for its life-saving procedures, neurosurgeons are called just as often to preside over the end of their patient’s lives – work that requires just as much skill as any technical procedure. Dr. Marsh recognized the tremendous human cost of neglecting that work. For cases that appear “hopeless,” he writes, “We often end up operating because it’s easier than being honest, and it means that we can avoid a painful conversation.”

We are only beginning to understand the many issues that neurosurgical patients face at the end of life, but so far it is clear that neurosurgical trainees require substantive training in prognostication, communication, and palliation (Crit Care Med. 2015 Sep;43[9]:1964-77 1,2; J Neurooncol. 2009 Jan;91[1]:39-43). Is there room in the current training paradigm for more formal education in these domains? As we move further into the 21st century, we must embrace the need for masterful clinicians outside of the operating room if we are to ever challenge the axiom set forth by the renowned French surgeon, René Leriche, some 65 years ago: “Every surgeon carries within himself a small cemetery, where from time to time he goes to pray – a place of bitterness and regret, where he must look for an explanation for his failures.” Let us look forward to the day when this is no longer the case.

Stephen Miranda is a medical student from the University of Rochester, who is now working as a research fellow at Ariadne Labs, a joint center for health systems innovation at Brigham & Women’s Hospital and Harvard T.H. Chan School of Public Health, both in Boston.

The juxtaposition between my first 2 days of neurosurgery could not have been more profound. On my first day as a third-year medical student, the attending and chief resident let me take the lead on the first case: a straightforward brain biopsy. I got to make the incision, drill the burr hole, and perform the needle biopsy. I still remember the thrill of the technical challenge, the controlled violence of drilling into the skull, and the finesse of accessing the tumor core.

The buzz was so strong that I barely registered the diagnosis that was called back from the pathologist: glioblastoma. It was not until I saw the face of the disease the next morning that I understood the reality of a GBM diagnosis. That face belonged to a 47-year-old man who hadn’t slept all night, wide eyed with apprehension at what news I might bring. He beseeched me with questions, and though his aphasia left him stammering to get the words out, I knew exactly what he was asking: Would he live or die? It was a question I was in no position to answer. Instead, I reassured him that we were waiting on the final pathology, all the while trying to forget the fact that the frozen section suggested an aggressive subtype, surely heralding a poor prognosis.

In his poignant memoir, “Do No Harm: Stories of Life, Death and Brain Surgery” (New York: Thomas Dunne Book, 2015), Dr. Henry Marsh writes beautifully about how difficult it can be to find the balance between optimism and realism.  In one memorable passage, Dr. Marsh shows a house officer a scan of a highly malignant brain tumor and asks him what he would say to the patient. The trainee reflexively hides behind jargon, skirting around what he knew to be the truth: This tumor would kill her. Marsh presses him to admit that he’s lying, before lamenting at how hard it is to improve these critical communication skills: “When I have had to break bad news I never know whether I have done it well or not. The patients aren’t going to ring me up afterward and say, ‘Mr. Marsh, I really liked the way you told me that I was going to die,’ or ‘Mr. Marsh, you were crap.’ You can only hope that you haven’t made too much of a mess of it.”

I could certainly relate to Dr. Marsh’s house officer as I walked away from my own patient. I felt almost deceitful withholding diagnostic information from him, even if I did the “right” thing. It made me wonder, why did I want to become a neurosurgeon? Surely to help people through some of the most difficult moments of their lives. But is it possible to be a source of comfort when you are required so often to be a harbinger of death? The answer depends on whether one can envision a role for the neurosurgeon beyond the mandate of “life at all costs.”

While the field has become known for its life-saving procedures, neurosurgeons are called just as often to preside over the end of their patient’s lives – work that requires just as much skill as any technical procedure. Dr. Marsh recognized the tremendous human cost of neglecting that work. For cases that appear “hopeless,” he writes, “We often end up operating because it’s easier than being honest, and it means that we can avoid a painful conversation.”

We are only beginning to understand the many issues that neurosurgical patients face at the end of life, but so far it is clear that neurosurgical trainees require substantive training in prognostication, communication, and palliation (Crit Care Med. 2015 Sep;43[9]:1964-77 1,2; J Neurooncol. 2009 Jan;91[1]:39-43). Is there room in the current training paradigm for more formal education in these domains? As we move further into the 21st century, we must embrace the need for masterful clinicians outside of the operating room if we are to ever challenge the axiom set forth by the renowned French surgeon, René Leriche, some 65 years ago: “Every surgeon carries within himself a small cemetery, where from time to time he goes to pray – a place of bitterness and regret, where he must look for an explanation for his failures.” Let us look forward to the day when this is no longer the case.

Stephen Miranda is a medical student from the University of Rochester, who is now working as a research fellow at Ariadne Labs, a joint center for health systems innovation at Brigham & Women’s Hospital and Harvard T.H. Chan School of Public Health, both in Boston.

The juxtaposition between my first 2 days of neurosurgery could not have been more profound. On my first day as a third-year medical student, the attending and chief resident let me take the lead on the first case: a straightforward brain biopsy. I got to make the incision, drill the burr hole, and perform the needle biopsy. I still remember the thrill of the technical challenge, the controlled violence of drilling into the skull, and the finesse of accessing the tumor core.

The buzz was so strong that I barely registered the diagnosis that was called back from the pathologist: glioblastoma. It was not until I saw the face of the disease the next morning that I understood the reality of a GBM diagnosis. That face belonged to a 47-year-old man who hadn’t slept all night, wide eyed with apprehension at what news I might bring. He beseeched me with questions, and though his aphasia left him stammering to get the words out, I knew exactly what he was asking: Would he live or die? It was a question I was in no position to answer. Instead, I reassured him that we were waiting on the final pathology, all the while trying to forget the fact that the frozen section suggested an aggressive subtype, surely heralding a poor prognosis.

In his poignant memoir, “Do No Harm: Stories of Life, Death and Brain Surgery” (New York: Thomas Dunne Book, 2015), Dr. Henry Marsh writes beautifully about how difficult it can be to find the balance between optimism and realism.  In one memorable passage, Dr. Marsh shows a house officer a scan of a highly malignant brain tumor and asks him what he would say to the patient. The trainee reflexively hides behind jargon, skirting around what he knew to be the truth: This tumor would kill her. Marsh presses him to admit that he’s lying, before lamenting at how hard it is to improve these critical communication skills: “When I have had to break bad news I never know whether I have done it well or not. The patients aren’t going to ring me up afterward and say, ‘Mr. Marsh, I really liked the way you told me that I was going to die,’ or ‘Mr. Marsh, you were crap.’ You can only hope that you haven’t made too much of a mess of it.”

I could certainly relate to Dr. Marsh’s house officer as I walked away from my own patient. I felt almost deceitful withholding diagnostic information from him, even if I did the “right” thing. It made me wonder, why did I want to become a neurosurgeon? Surely to help people through some of the most difficult moments of their lives. But is it possible to be a source of comfort when you are required so often to be a harbinger of death? The answer depends on whether one can envision a role for the neurosurgeon beyond the mandate of “life at all costs.”

While the field has become known for its life-saving procedures, neurosurgeons are called just as often to preside over the end of their patient’s lives – work that requires just as much skill as any technical procedure. Dr. Marsh recognized the tremendous human cost of neglecting that work. For cases that appear “hopeless,” he writes, “We often end up operating because it’s easier than being honest, and it means that we can avoid a painful conversation.”

We are only beginning to understand the many issues that neurosurgical patients face at the end of life, but so far it is clear that neurosurgical trainees require substantive training in prognostication, communication, and palliation (Crit Care Med. 2015 Sep;43[9]:1964-77 1,2; J Neurooncol. 2009 Jan;91[1]:39-43). Is there room in the current training paradigm for more formal education in these domains? As we move further into the 21st century, we must embrace the need for masterful clinicians outside of the operating room if we are to ever challenge the axiom set forth by the renowned French surgeon, René Leriche, some 65 years ago: “Every surgeon carries within himself a small cemetery, where from time to time he goes to pray – a place of bitterness and regret, where he must look for an explanation for his failures.” Let us look forward to the day when this is no longer the case.

Stephen Miranda is a medical student from the University of Rochester, who is now working as a research fellow at Ariadne Labs, a joint center for health systems innovation at Brigham & Women’s Hospital and Harvard T.H. Chan School of Public Health, both in Boston.

An expert panel has developed a communication framework to improve treatment of older, seriously ill patients who have surgical emergencies, which has been published online in Annals of Surgery.

A substantial portion of older patients who undergo emergency surgeries already have serious life-limiting illnesses such as cardiopulmonary disease, renal failure, liver failure, dementia, severe neurological impairment, or malignancy. The advisory panel based its work on the premise that surgery in these circumstances can lead to significant further morbidity, health care utilization, functional decline, prolonged hospital stay or institutionalization, and death, with attendant physical discomfort and psychological distress at the end of these patients’ lives.

Surgeons consulted in the emergency setting for these patients are hampered by patients unable to communicate well because they are in extremis, by surrogates who are unprepared for their role, and by time constraints, lack of familiarity with the patient, poor understanding of the illness by patients and families, prognostic uncertainty, and inadequate advance care planning. In addition, “many surgeons lack skills to engage in conversations about end-of-life care, or are too unfamiliar with palliative options to discuss them well,” or feel obligated to maintain postoperative life support despite the patient’s wishes, said Dr. Zara Cooper, of Ariadne Labs and the Center for Surgery and Public Health at Brigham and Women’s Hospital, both in Boston, and her associates.

To address these issues and assist surgeons in caring for such patients, an expert panel of 23 national leaders in acute care surgery, general surgery, surgical oncology, palliative medicine, critical care, emergency medicine, anesthesia, and health care innovation was convened at Harvard Medical School, Boston.

The focus of the panel’s recommendations was a structured communications framework prototype to facilitate shared decision-making in these difficult circumstances.

Among the panel’s recommendations for surgeons were the following priorities:

• Review the medical record and consult the treatment team to fully understand the patient’s current condition, comorbidities, expected illness trajectory, and preferences for end-of-life care.

• Assess functional performance as part of the routine history and physical to fully understand the patient’s fitness for surgery.

• Formulate a prognosis regarding the patient’s overall health both with and without surgery.

The panel offered a set of principles and specific elements for the meeting with the patient and family:

• The surgeon should begin by introducing himself or herself; according to reports in the literature, physicians fail to do this approximately half of the time.

• Pay attention to nonverbal communication, such as eye contact and physical contact, as this is critical to building rapport. Immediately address pain, anxiety, and other indicators of distress, to maximize the patients’ and the families’ engagement in subsequent medical discussions. “Although adequate analgesia may render a patient unable to make their own decisions, surrogates are more likely to make appropriate decisions when they feel their loved one is comfortable,” the panel noted.

• Allow pauses and silences to occur. Let the patient and the family process information and their own emotions.

• Elicit the patients’ or the surrogates’ understanding of the illness and their views of the patients’ likely trajectory, correcting any inaccuracies. This substantially influences their decisions regarding the aggressiveness of subsequent treatments.

• Inform the patient and family of the life-threatening nature of the patient’s acute condition and its potential impact on the rest of his or her life, including the possibility of prolonged life support, ICU stay, burdensome treatment, and loss of independence. Use accepted techniques for breaking bad news, and check to be sure the patient understands what was conveyed.

• At this point, the surgeon should synthesize and summarize the information from the patient, the family, and the medical record, then pause to give them time to process the information and to assess their emotional state. It is helpful to label and respond to the patient’s emotions at this juncture, and to build empathy with statements such as “I know this is difficult news, and I wish it were different.”

• Describe the benefits, burdens, and range of likely outcomes if surgery is undertaken and if it is not. The surgeon should use nonmedical language to describe symptoms, and should convey his or her expectations regarding length of hospitalization, need for and duration of life support, burdensome symptoms, discharge to an institution, and functional recovery.

• Surgeons should be able to communicate palliative options possible either in combination with surgery or instead of surgery. Palliative care can aid in managing advanced symptoms, providing psychosocial support for patients and caregivers, facilitating interdisciplinary communication, and facilitating medical decisions and care transitions.

• Avoid describing surgical procedures as “doing everything” and palliative care as “doing nothing.” This can make patients and families “feel abandoned, fearful, isolated, and angry, and fails to encompass palliative care’s practices of proactive communication, aggressive symptom management, and timely emotional support to alleviate suffering and affirm quality of life,” the panel said.

• Surgeons should explicitly support the patients’ medical decisions, whether or not they choose surgery.

The panel also cited a few factors that would assist surgeons in following these recommendations. First, surgeons must recognize the importance of communicating well with seriously ill older patients and acknowledge that this is a crucial clinical skill for them to cultivate. They must also recognize that palliative care is vital to delivering high-quality surgical care. Surgeons should consider discharging patients to hospice, which can improve pain and symptom management, improve patient and family satisfaction with care, and avoid unwanted hospitalization or cardiopulmonary resuscitation.

“There are a number of major barriers to introducing palliative care in these situations. One is an education problem - the perception on the part of patients and clinicians, and surgeons in particular, that palliative care is only limited to end-of-life care, which it is not. It is a misperception of what palliative care means in this equation - that palliative care and hospice are the same thing, which they absolutely are not,”said Dr. Cooper in an interview.

”The definition of palliative care has evolved over the past decade and the focus of palliative care is on quality of life and alleviating symptoms. End-of-life palliative care is part of that, and as patients get closer to the end of life, symptom management and quality of life become more focal than life-prolonging treatment... But for patients with chronic and serious illness, there has to be a role for palliative care because we know that when patients feel better, they tend to live longer. And when patients feel their emotional concerns and physical needs are being addressed, they tend to do better. Patients families have improved satisfaction when their loved one receives palliative care,” she noted.”

However, the number of palliative providers is completely inadequate to meet the needs of the number of seriously ill patients, she said. And a lot of hospital-based palliative care is by necessity limited to end-of-life care because of a lack of palliative resources.

Dr. Atul Gawande, a coauthor of the panel recommendations, wrote a best-selling book, Being Mortal (New York: Metropolitan Books, 2014) addressing the shortcomings and potential remaking of medical care in the context of age-related frailty, grave illness, and death. Dr. Cooper noted that there is a growing sentiment among the general public that they want to have their quality of life addressed in the type of medical care they receive. She said that Dr. Gawande’s book tapped into the perception of a lack of recognition of personhood of seriously ill patients.

“We often focus on diagnosis and we don’t have the ‘bandwidth’ to focus on the person carrying that diagnosis, and our patients and focus on the person carrying that diagnosis, but our patients and their families are demanding different types of care. So, ultimately, the patients will be the ones to push us to do better for them.”

The next steps to further developing a widely used and validated communication framework would be to create educational opportunities for clinicians to develop clinical skills in communication with seriously ill patients and palliative care, and to study the impact of these initiatives on improving outcomes most relevant to older patient. This work was supported by the Ariadne Labs, a Joint Center for Health System Innovation at Brigham and Women’s Hospital. Dr. Cooper and her associates reported having no relevant financial disclosures.

An expert panel has developed a communication framework to improve treatment of older, seriously ill patients who have surgical emergencies, which has been published online in Annals of Surgery.

A substantial portion of older patients who undergo emergency surgeries already have serious life-limiting illnesses such as cardiopulmonary disease, renal failure, liver failure, dementia, severe neurological impairment, or malignancy. The advisory panel based its work on the premise that surgery in these circumstances can lead to significant further morbidity, health care utilization, functional decline, prolonged hospital stay or institutionalization, and death, with attendant physical discomfort and psychological distress at the end of these patients’ lives.

Surgeons consulted in the emergency setting for these patients are hampered by patients unable to communicate well because they are in extremis, by surrogates who are unprepared for their role, and by time constraints, lack of familiarity with the patient, poor understanding of the illness by patients and families, prognostic uncertainty, and inadequate advance care planning. In addition, “many surgeons lack skills to engage in conversations about end-of-life care, or are too unfamiliar with palliative options to discuss them well,” or feel obligated to maintain postoperative life support despite the patient’s wishes, said Dr. Zara Cooper, of Ariadne Labs and the Center for Surgery and Public Health at Brigham and Women’s Hospital, both in Boston, and her associates.

To address these issues and assist surgeons in caring for such patients, an expert panel of 23 national leaders in acute care surgery, general surgery, surgical oncology, palliative medicine, critical care, emergency medicine, anesthesia, and health care innovation was convened at Harvard Medical School, Boston.

The focus of the panel’s recommendations was a structured communications framework prototype to facilitate shared decision-making in these difficult circumstances.

Among the panel’s recommendations for surgeons were the following priorities:

• Review the medical record and consult the treatment team to fully understand the patient’s current condition, comorbidities, expected illness trajectory, and preferences for end-of-life care.

• Assess functional performance as part of the routine history and physical to fully understand the patient’s fitness for surgery.

• Formulate a prognosis regarding the patient’s overall health both with and without surgery.

The panel offered a set of principles and specific elements for the meeting with the patient and family:

• The surgeon should begin by introducing himself or herself; according to reports in the literature, physicians fail to do this approximately half of the time.

• Pay attention to nonverbal communication, such as eye contact and physical contact, as this is critical to building rapport. Immediately address pain, anxiety, and other indicators of distress, to maximize the patients’ and the families’ engagement in subsequent medical discussions. “Although adequate analgesia may render a patient unable to make their own decisions, surrogates are more likely to make appropriate decisions when they feel their loved one is comfortable,” the panel noted.

• Allow pauses and silences to occur. Let the patient and the family process information and their own emotions.

• Elicit the patients’ or the surrogates’ understanding of the illness and their views of the patients’ likely trajectory, correcting any inaccuracies. This substantially influences their decisions regarding the aggressiveness of subsequent treatments.

• Inform the patient and family of the life-threatening nature of the patient’s acute condition and its potential impact on the rest of his or her life, including the possibility of prolonged life support, ICU stay, burdensome treatment, and loss of independence. Use accepted techniques for breaking bad news, and check to be sure the patient understands what was conveyed.

• At this point, the surgeon should synthesize and summarize the information from the patient, the family, and the medical record, then pause to give them time to process the information and to assess their emotional state. It is helpful to label and respond to the patient’s emotions at this juncture, and to build empathy with statements such as “I know this is difficult news, and I wish it were different.”

• Describe the benefits, burdens, and range of likely outcomes if surgery is undertaken and if it is not. The surgeon should use nonmedical language to describe symptoms, and should convey his or her expectations regarding length of hospitalization, need for and duration of life support, burdensome symptoms, discharge to an institution, and functional recovery.

• Surgeons should be able to communicate palliative options possible either in combination with surgery or instead of surgery. Palliative care can aid in managing advanced symptoms, providing psychosocial support for patients and caregivers, facilitating interdisciplinary communication, and facilitating medical decisions and care transitions.

• Avoid describing surgical procedures as “doing everything” and palliative care as “doing nothing.” This can make patients and families “feel abandoned, fearful, isolated, and angry, and fails to encompass palliative care’s practices of proactive communication, aggressive symptom management, and timely emotional support to alleviate suffering and affirm quality of life,” the panel said.

• Surgeons should explicitly support the patients’ medical decisions, whether or not they choose surgery.

The panel also cited a few factors that would assist surgeons in following these recommendations. First, surgeons must recognize the importance of communicating well with seriously ill older patients and acknowledge that this is a crucial clinical skill for them to cultivate. They must also recognize that palliative care is vital to delivering high-quality surgical care. Surgeons should consider discharging patients to hospice, which can improve pain and symptom management, improve patient and family satisfaction with care, and avoid unwanted hospitalization or cardiopulmonary resuscitation.

“There are a number of major barriers to introducing palliative care in these situations. One is an education problem - the perception on the part of patients and clinicians, and surgeons in particular, that palliative care is only limited to end-of-life care, which it is not. It is a misperception of what palliative care means in this equation - that palliative care and hospice are the same thing, which they absolutely are not,”said Dr. Cooper in an interview.

”The definition of palliative care has evolved over the past decade and the focus of palliative care is on quality of life and alleviating symptoms. End-of-life palliative care is part of that, and as patients get closer to the end of life, symptom management and quality of life become more focal than life-prolonging treatment... But for patients with chronic and serious illness, there has to be a role for palliative care because we know that when patients feel better, they tend to live longer. And when patients feel their emotional concerns and physical needs are being addressed, they tend to do better. Patients families have improved satisfaction when their loved one receives palliative care,” she noted.”

However, the number of palliative providers is completely inadequate to meet the needs of the number of seriously ill patients, she said. And a lot of hospital-based palliative care is by necessity limited to end-of-life care because of a lack of palliative resources.

Dr. Atul Gawande, a coauthor of the panel recommendations, wrote a best-selling book, Being Mortal (New York: Metropolitan Books, 2014) addressing the shortcomings and potential remaking of medical care in the context of age-related frailty, grave illness, and death. Dr. Cooper noted that there is a growing sentiment among the general public that they want to have their quality of life addressed in the type of medical care they receive. She said that Dr. Gawande’s book tapped into the perception of a lack of recognition of personhood of seriously ill patients.

“We often focus on diagnosis and we don’t have the ‘bandwidth’ to focus on the person carrying that diagnosis, and our patients and focus on the person carrying that diagnosis, but our patients and their families are demanding different types of care. So, ultimately, the patients will be the ones to push us to do better for them.”

The next steps to further developing a widely used and validated communication framework would be to create educational opportunities for clinicians to develop clinical skills in communication with seriously ill patients and palliative care, and to study the impact of these initiatives on improving outcomes most relevant to older patient. This work was supported by the Ariadne Labs, a Joint Center for Health System Innovation at Brigham and Women’s Hospital. Dr. Cooper and her associates reported having no relevant financial disclosures.

An expert panel has developed a communication framework to improve treatment of older, seriously ill patients who have surgical emergencies, which has been published online in Annals of Surgery.

A substantial portion of older patients who undergo emergency surgeries already have serious life-limiting illnesses such as cardiopulmonary disease, renal failure, liver failure, dementia, severe neurological impairment, or malignancy. The advisory panel based its work on the premise that surgery in these circumstances can lead to significant further morbidity, health care utilization, functional decline, prolonged hospital stay or institutionalization, and death, with attendant physical discomfort and psychological distress at the end of these patients’ lives.

Surgeons consulted in the emergency setting for these patients are hampered by patients unable to communicate well because they are in extremis, by surrogates who are unprepared for their role, and by time constraints, lack of familiarity with the patient, poor understanding of the illness by patients and families, prognostic uncertainty, and inadequate advance care planning. In addition, “many surgeons lack skills to engage in conversations about end-of-life care, or are too unfamiliar with palliative options to discuss them well,” or feel obligated to maintain postoperative life support despite the patient’s wishes, said Dr. Zara Cooper, of Ariadne Labs and the Center for Surgery and Public Health at Brigham and Women’s Hospital, both in Boston, and her associates.

To address these issues and assist surgeons in caring for such patients, an expert panel of 23 national leaders in acute care surgery, general surgery, surgical oncology, palliative medicine, critical care, emergency medicine, anesthesia, and health care innovation was convened at Harvard Medical School, Boston.

The focus of the panel’s recommendations was a structured communications framework prototype to facilitate shared decision-making in these difficult circumstances.

Among the panel’s recommendations for surgeons were the following priorities:

• Review the medical record and consult the treatment team to fully understand the patient’s current condition, comorbidities, expected illness trajectory, and preferences for end-of-life care.

• Assess functional performance as part of the routine history and physical to fully understand the patient’s fitness for surgery.

• Formulate a prognosis regarding the patient’s overall health both with and without surgery.

The panel offered a set of principles and specific elements for the meeting with the patient and family:

• The surgeon should begin by introducing himself or herself; according to reports in the literature, physicians fail to do this approximately half of the time.

• Pay attention to nonverbal communication, such as eye contact and physical contact, as this is critical to building rapport. Immediately address pain, anxiety, and other indicators of distress, to maximize the patients’ and the families’ engagement in subsequent medical discussions. “Although adequate analgesia may render a patient unable to make their own decisions, surrogates are more likely to make appropriate decisions when they feel their loved one is comfortable,” the panel noted.

• Allow pauses and silences to occur. Let the patient and the family process information and their own emotions.

• Elicit the patients’ or the surrogates’ understanding of the illness and their views of the patients’ likely trajectory, correcting any inaccuracies. This substantially influences their decisions regarding the aggressiveness of subsequent treatments.

• Inform the patient and family of the life-threatening nature of the patient’s acute condition and its potential impact on the rest of his or her life, including the possibility of prolonged life support, ICU stay, burdensome treatment, and loss of independence. Use accepted techniques for breaking bad news, and check to be sure the patient understands what was conveyed.

• At this point, the surgeon should synthesize and summarize the information from the patient, the family, and the medical record, then pause to give them time to process the information and to assess their emotional state. It is helpful to label and respond to the patient’s emotions at this juncture, and to build empathy with statements such as “I know this is difficult news, and I wish it were different.”

• Describe the benefits, burdens, and range of likely outcomes if surgery is undertaken and if it is not. The surgeon should use nonmedical language to describe symptoms, and should convey his or her expectations regarding length of hospitalization, need for and duration of life support, burdensome symptoms, discharge to an institution, and functional recovery.

• Surgeons should be able to communicate palliative options possible either in combination with surgery or instead of surgery. Palliative care can aid in managing advanced symptoms, providing psychosocial support for patients and caregivers, facilitating interdisciplinary communication, and facilitating medical decisions and care transitions.

• Avoid describing surgical procedures as “doing everything” and palliative care as “doing nothing.” This can make patients and families “feel abandoned, fearful, isolated, and angry, and fails to encompass palliative care’s practices of proactive communication, aggressive symptom management, and timely emotional support to alleviate suffering and affirm quality of life,” the panel said.

• Surgeons should explicitly support the patients’ medical decisions, whether or not they choose surgery.

The panel also cited a few factors that would assist surgeons in following these recommendations. First, surgeons must recognize the importance of communicating well with seriously ill older patients and acknowledge that this is a crucial clinical skill for them to cultivate. They must also recognize that palliative care is vital to delivering high-quality surgical care. Surgeons should consider discharging patients to hospice, which can improve pain and symptom management, improve patient and family satisfaction with care, and avoid unwanted hospitalization or cardiopulmonary resuscitation.

“There are a number of major barriers to introducing palliative care in these situations. One is an education problem - the perception on the part of patients and clinicians, and surgeons in particular, that palliative care is only limited to end-of-life care, which it is not. It is a misperception of what palliative care means in this equation - that palliative care and hospice are the same thing, which they absolutely are not,”said Dr. Cooper in an interview.

”The definition of palliative care has evolved over the past decade and the focus of palliative care is on quality of life and alleviating symptoms. End-of-life palliative care is part of that, and as patients get closer to the end of life, symptom management and quality of life become more focal than life-prolonging treatment... But for patients with chronic and serious illness, there has to be a role for palliative care because we know that when patients feel better, they tend to live longer. And when patients feel their emotional concerns and physical needs are being addressed, they tend to do better. Patients families have improved satisfaction when their loved one receives palliative care,” she noted.”

However, the number of palliative providers is completely inadequate to meet the needs of the number of seriously ill patients, she said. And a lot of hospital-based palliative care is by necessity limited to end-of-life care because of a lack of palliative resources.

Dr. Atul Gawande, a coauthor of the panel recommendations, wrote a best-selling book, Being Mortal (New York: Metropolitan Books, 2014) addressing the shortcomings and potential remaking of medical care in the context of age-related frailty, grave illness, and death. Dr. Cooper noted that there is a growing sentiment among the general public that they want to have their quality of life addressed in the type of medical care they receive. She said that Dr. Gawande’s book tapped into the perception of a lack of recognition of personhood of seriously ill patients.

“We often focus on diagnosis and we don’t have the ‘bandwidth’ to focus on the person carrying that diagnosis, and our patients and focus on the person carrying that diagnosis, but our patients and their families are demanding different types of care. So, ultimately, the patients will be the ones to push us to do better for them.”

The next steps to further developing a widely used and validated communication framework would be to create educational opportunities for clinicians to develop clinical skills in communication with seriously ill patients and palliative care, and to study the impact of these initiatives on improving outcomes most relevant to older patient. This work was supported by the Ariadne Labs, a Joint Center for Health System Innovation at Brigham and Women’s Hospital. Dr. Cooper and her associates reported having no relevant financial disclosures.

Clinical question: Does time to consult after admission change the effect palliative care consultation has on cost of care?

Background: Studies have shown that early palliative care involvement improves quality of life and survival among cancer patients while reducing the cost of care. Little is known about the optimal timing of palliative care consultation and its effect on cost.

Study design: Prospective, observational study.

Setting: Multi-site, high-volume, tertiary care hospitals with established palliative care teams.

Synopsis: Clinical and cost data were collected for 969 adult patients with advanced cancer admitted to the five participating hospitals. Among those, 256 patients received palliative care consultation and 713 received usual care. Subsamples were created based on time to consultation after admission.

The study found that earlier consultation yielded larger effects on cost savings. There was a 24% reduction in total cost if consultation occurred within two days (95% CI, -$3,438 to -$1,122; P<0.001), with estimated savings of $2,280. For consultation within six days of admission, there was a $1,312 savings (95% CI, -$2,568 to -$ 1,122; P<0.04), consistent with a 14% reduction in total cost.

There are notable limitations to this study. Half of eligible patients were excluded due to incomplete data collection, resulting in a small sample size. Further, these results can be generalized only to inpatients with advanced cancer.

Bottom line: Reducing the time to consultation with palliative care increases cost savings. In advanced cancer patients, a 24% reduction in total costs was realized for consultation within two days following admission.

Citation: May P, Garrido MM, Cassel JB, et al. Prospective cohort study of hospital palliative care teams for inpatients with advanced cancer: earlier consultation is associated with larger cost-saving effect. J Clin Oncol. 2015;33(25):2745-2752.

Clinical question: Does time to consult after admission change the effect palliative care consultation has on cost of care?

Background: Studies have shown that early palliative care involvement improves quality of life and survival among cancer patients while reducing the cost of care. Little is known about the optimal timing of palliative care consultation and its effect on cost.

Study design: Prospective, observational study.

Setting: Multi-site, high-volume, tertiary care hospitals with established palliative care teams.

Synopsis: Clinical and cost data were collected for 969 adult patients with advanced cancer admitted to the five participating hospitals. Among those, 256 patients received palliative care consultation and 713 received usual care. Subsamples were created based on time to consultation after admission.

The study found that earlier consultation yielded larger effects on cost savings. There was a 24% reduction in total cost if consultation occurred within two days (95% CI, -$3,438 to -$1,122; P<0.001), with estimated savings of $2,280. For consultation within six days of admission, there was a $1,312 savings (95% CI, -$2,568 to -$ 1,122; P<0.04), consistent with a 14% reduction in total cost.

There are notable limitations to this study. Half of eligible patients were excluded due to incomplete data collection, resulting in a small sample size. Further, these results can be generalized only to inpatients with advanced cancer.

Bottom line: Reducing the time to consultation with palliative care increases cost savings. In advanced cancer patients, a 24% reduction in total costs was realized for consultation within two days following admission.

Citation: May P, Garrido MM, Cassel JB, et al. Prospective cohort study of hospital palliative care teams for inpatients with advanced cancer: earlier consultation is associated with larger cost-saving effect. J Clin Oncol. 2015;33(25):2745-2752.

Clinical question: Does time to consult after admission change the effect palliative care consultation has on cost of care?

Background: Studies have shown that early palliative care involvement improves quality of life and survival among cancer patients while reducing the cost of care. Little is known about the optimal timing of palliative care consultation and its effect on cost.

Study design: Prospective, observational study.

Setting: Multi-site, high-volume, tertiary care hospitals with established palliative care teams.

Synopsis: Clinical and cost data were collected for 969 adult patients with advanced cancer admitted to the five participating hospitals. Among those, 256 patients received palliative care consultation and 713 received usual care. Subsamples were created based on time to consultation after admission.

The study found that earlier consultation yielded larger effects on cost savings. There was a 24% reduction in total cost if consultation occurred within two days (95% CI, -$3,438 to -$1,122; P<0.001), with estimated savings of $2,280. For consultation within six days of admission, there was a $1,312 savings (95% CI, -$2,568 to -$ 1,122; P<0.04), consistent with a 14% reduction in total cost.

There are notable limitations to this study. Half of eligible patients were excluded due to incomplete data collection, resulting in a small sample size. Further, these results can be generalized only to inpatients with advanced cancer.

Bottom line: Reducing the time to consultation with palliative care increases cost savings. In advanced cancer patients, a 24% reduction in total costs was realized for consultation within two days following admission.

Citation: May P, Garrido MM, Cassel JB, et al. Prospective cohort study of hospital palliative care teams for inpatients with advanced cancer: earlier consultation is associated with larger cost-saving effect. J Clin Oncol. 2015;33(25):2745-2752.