Need for Control Drives Assisted Suicide Requests : Patients who went through with assisted suicide wanted to be self-reliant until the end, studies show.

SANTA ANA PUEBLO, N.M. – The key factor motivating the terminally ill to seek assisted suicide under Oregon's Death with Dignity Act–a sense of control–should prompt a rethinking of end-of-life care, Dr. Linda Ganzini said at the annual meeting of the Academy of Psychosomatic Medicine.

Studies of terminally ill patients in Oregon showed that “some people want to leave this world in the driver's seat. That's their major goal,” said Dr. Ganzini, director of the geriatric psychiatry fellowship program at Oregon Health and Science University, Portland. “And we need to let this goal start driving how they should be cared for–whether they get assisted suicide or not.”

The findings gained new currency last month, when the U.S. Supreme Court ruled that the Bush administration improperly tried to use a federal drug law to stop physicians from prescribing lethal drugs to terminally ill patients under the Oregon law.

The studies, which also included physicians, nurses, hospice chaplains, and family members, showed that few of the factors anticipated in the political debate over the law were significant to the terminally ill in determining who chose assisted suicide. Most patients who requested lethal prescriptions were no more depressed, poor, poorly educated, from minority groups, or in worse physical condition than were those who opted not to make such a request.

“These were individuals who wanted to control their lives,” Dr. Ganzini said. Relatively few people go through with assisted suicide, but those who do are determined to remain self-reliant until the end.

Often, those who requested assisted suicide had highly successful careers and worked as school superintendents, teachers, lawyers, and dentists, Dr. Ganzini said. Overcoming adversity early in life was another common experience for many who requested assisted suicide.

“Many had parents who were neglectful or incompetent,” she said. “They learned to be very self-sufficient and to prize their independence.”

Oregon's voters passed its Death with Dignity Act by a slim majority in 1994, making Oregon the first and only state to approve assisted suicide. The act was delayed by a legal injunction until 1997, when 60% of voters refused to repeal it.

Since 1997, Oregon has had 208 deaths by assisted suicide, said Dr. Ganzini, also a senior scholar at the university's center for ethics in health care. “For every 1,000 patients in Oregon who die, 100 will seriously consider assisted suicide, 10 will make an explicit request, and 1 will die by it,” she said.

Amyotrophic lateral sclerosis (ALS) is the disease tied to the highest number of assisted suicide requests, Dr. Ganzini said. Compared with other patients, ALS patients in Oregon have an odds ratio above 20 for dying by assisted suicide.

A study she and her associates conducted with 100 ALS patients showed that a sense of hopelessness was an important predictor of interest in obtaining a lethal prescription.

Dr. Ganzini is now studying patients who are in the process of making legal requests. “They are really focused on what is coming down the road, how intolerable it will be, and how it will make their lives not worth living when it happens,” she said. She noted that no patient complained of physical symptoms worse than 2 on a scale of 1–5 when they made their requests, but that they feared worsening symptoms as the disease progressed.

In another study with cancer patients, growing dissatisfaction with medical care was a leading predictor of interest in assisted suicide, and perhaps the interest reflected hopelessness, she added.

Depression was expected to be the biggest risk factor for assisted suicide requests, Dr. Ganzini said. In addition to the patient having to provide two oral requests and one written request, Oregon's law requires that patients be screened by a psychiatrist or psychologist if depression is suspected.

Yet physicians surveyed by Dr. Ganzini ranked the prevalence of depression at about 20% of patients making a request (N. Engl. J. Med. 2000;342:557–63). Hospice social workers and nurses also put depression among the least important reasons for requests (N. Engl. J. Med. 2002;347:582–8).

In her current study, she reported that only 6 of 46 patients requesting assisted suicide met criteria for a major depressive disorder in structured clinical interviews. Even patients who felt hopeless were not depressed.

“I remain very perplexed. I still don't know why there are not more depressed people making a request,” Dr. Ganzini said. But she has a few theories that might explain why investigators don't find more depression. “I have no empirical data to support it, but people who go through this process have to be very physically fit, determined, convincing, and articulate. I think depressed people, particularly if they are physically ill people, may get left behind in this process.”

Another concern that arose before the passage of the Death with Dignity Act was that the act might undermine efforts to improve hospice or palliative care. Instead, 86% of assisted suicides occurred in hospice patients, Dr. Ganzini said.

Opposition to the law remains fairly strong. About 42% of hospice chaplains and a third of hospice nurses oppose the law, she said. Yet few said they would actively oppose it with a patient, and no chaplain would seek transfer of a patient who requested assisted suicide.

“Even though they oppose suicide, their moral feelings about abandoning the patient are stronger,” she said, adding that the chaplains said providing nonjudgmental support was the most effective way to help change a person's mind.

The Oregon experience highlights “a very rarified group” of people whose needs are not generalizable but should not be ignored, Dr. Ganzini concluded. As an example, she cited Annie, who stopped hospice services after 13 days, saying, “They [the staff] are really nice, but I just hate it when other people tell me what to do.”

The one-size-fits-all hospice care model actually does not fit everyone, Dr. Ganzini said. “I think hospice and palliative care have to change to individualize the treatment they offer.”

'Some people want to leave this world in the driver's seat. That's their major goal.' DR. GANZINI

SANTA ANA PUEBLO, N.M. – The key factor motivating the terminally ill to seek assisted suicide under Oregon's Death with Dignity Act–a sense of control–should prompt a rethinking of end-of-life care, Dr. Linda Ganzini said at the annual meeting of the Academy of Psychosomatic Medicine.

Studies of terminally ill patients in Oregon showed that “some people want to leave this world in the driver's seat. That's their major goal,” said Dr. Ganzini, director of the geriatric psychiatry fellowship program at Oregon Health and Science University, Portland. “And we need to let this goal start driving how they should be cared for–whether they get assisted suicide or not.”

The findings gained new currency last month, when the U.S. Supreme Court ruled that the Bush administration improperly tried to use a federal drug law to stop physicians from prescribing lethal drugs to terminally ill patients under the Oregon law.

The studies, which also included physicians, nurses, hospice chaplains, and family members, showed that few of the factors anticipated in the political debate over the law were significant to the terminally ill in determining who chose assisted suicide. Most patients who requested lethal prescriptions were no more depressed, poor, poorly educated, from minority groups, or in worse physical condition than were those who opted not to make such a request.

“These were individuals who wanted to control their lives,” Dr. Ganzini said. Relatively few people go through with assisted suicide, but those who do are determined to remain self-reliant until the end.

Often, those who requested assisted suicide had highly successful careers and worked as school superintendents, teachers, lawyers, and dentists, Dr. Ganzini said. Overcoming adversity early in life was another common experience for many who requested assisted suicide.

“Many had parents who were neglectful or incompetent,” she said. “They learned to be very self-sufficient and to prize their independence.”

Oregon's voters passed its Death with Dignity Act by a slim majority in 1994, making Oregon the first and only state to approve assisted suicide. The act was delayed by a legal injunction until 1997, when 60% of voters refused to repeal it.

Since 1997, Oregon has had 208 deaths by assisted suicide, said Dr. Ganzini, also a senior scholar at the university's center for ethics in health care. “For every 1,000 patients in Oregon who die, 100 will seriously consider assisted suicide, 10 will make an explicit request, and 1 will die by it,” she said.

Amyotrophic lateral sclerosis (ALS) is the disease tied to the highest number of assisted suicide requests, Dr. Ganzini said. Compared with other patients, ALS patients in Oregon have an odds ratio above 20 for dying by assisted suicide.

A study she and her associates conducted with 100 ALS patients showed that a sense of hopelessness was an important predictor of interest in obtaining a lethal prescription.

Dr. Ganzini is now studying patients who are in the process of making legal requests. “They are really focused on what is coming down the road, how intolerable it will be, and how it will make their lives not worth living when it happens,” she said. She noted that no patient complained of physical symptoms worse than 2 on a scale of 1–5 when they made their requests, but that they feared worsening symptoms as the disease progressed.

In another study with cancer patients, growing dissatisfaction with medical care was a leading predictor of interest in assisted suicide, and perhaps the interest reflected hopelessness, she added.

Depression was expected to be the biggest risk factor for assisted suicide requests, Dr. Ganzini said. In addition to the patient having to provide two oral requests and one written request, Oregon's law requires that patients be screened by a psychiatrist or psychologist if depression is suspected.

Yet physicians surveyed by Dr. Ganzini ranked the prevalence of depression at about 20% of patients making a request (N. Engl. J. Med. 2000;342:557–63). Hospice social workers and nurses also put depression among the least important reasons for requests (N. Engl. J. Med. 2002;347:582–8).

In her current study, she reported that only 6 of 46 patients requesting assisted suicide met criteria for a major depressive disorder in structured clinical interviews. Even patients who felt hopeless were not depressed.

“I remain very perplexed. I still don't know why there are not more depressed people making a request,” Dr. Ganzini said. But she has a few theories that might explain why investigators don't find more depression. “I have no empirical data to support it, but people who go through this process have to be very physically fit, determined, convincing, and articulate. I think depressed people, particularly if they are physically ill people, may get left behind in this process.”

Another concern that arose before the passage of the Death with Dignity Act was that the act might undermine efforts to improve hospice or palliative care. Instead, 86% of assisted suicides occurred in hospice patients, Dr. Ganzini said.

Opposition to the law remains fairly strong. About 42% of hospice chaplains and a third of hospice nurses oppose the law, she said. Yet few said they would actively oppose it with a patient, and no chaplain would seek transfer of a patient who requested assisted suicide.

“Even though they oppose suicide, their moral feelings about abandoning the patient are stronger,” she said, adding that the chaplains said providing nonjudgmental support was the most effective way to help change a person's mind.

The Oregon experience highlights “a very rarified group” of people whose needs are not generalizable but should not be ignored, Dr. Ganzini concluded. As an example, she cited Annie, who stopped hospice services after 13 days, saying, “They [the staff] are really nice, but I just hate it when other people tell me what to do.”

The one-size-fits-all hospice care model actually does not fit everyone, Dr. Ganzini said. “I think hospice and palliative care have to change to individualize the treatment they offer.”

'Some people want to leave this world in the driver's seat. That's their major goal.' DR. GANZINI

SANTA ANA PUEBLO, N.M. – The key factor motivating the terminally ill to seek assisted suicide under Oregon's Death with Dignity Act–a sense of control–should prompt a rethinking of end-of-life care, Dr. Linda Ganzini said at the annual meeting of the Academy of Psychosomatic Medicine.

Studies of terminally ill patients in Oregon showed that “some people want to leave this world in the driver's seat. That's their major goal,” said Dr. Ganzini, director of the geriatric psychiatry fellowship program at Oregon Health and Science University, Portland. “And we need to let this goal start driving how they should be cared for–whether they get assisted suicide or not.”

The findings gained new currency last month, when the U.S. Supreme Court ruled that the Bush administration improperly tried to use a federal drug law to stop physicians from prescribing lethal drugs to terminally ill patients under the Oregon law.

The studies, which also included physicians, nurses, hospice chaplains, and family members, showed that few of the factors anticipated in the political debate over the law were significant to the terminally ill in determining who chose assisted suicide. Most patients who requested lethal prescriptions were no more depressed, poor, poorly educated, from minority groups, or in worse physical condition than were those who opted not to make such a request.

“These were individuals who wanted to control their lives,” Dr. Ganzini said. Relatively few people go through with assisted suicide, but those who do are determined to remain self-reliant until the end.

Often, those who requested assisted suicide had highly successful careers and worked as school superintendents, teachers, lawyers, and dentists, Dr. Ganzini said. Overcoming adversity early in life was another common experience for many who requested assisted suicide.

“Many had parents who were neglectful or incompetent,” she said. “They learned to be very self-sufficient and to prize their independence.”

Oregon's voters passed its Death with Dignity Act by a slim majority in 1994, making Oregon the first and only state to approve assisted suicide. The act was delayed by a legal injunction until 1997, when 60% of voters refused to repeal it.

Since 1997, Oregon has had 208 deaths by assisted suicide, said Dr. Ganzini, also a senior scholar at the university's center for ethics in health care. “For every 1,000 patients in Oregon who die, 100 will seriously consider assisted suicide, 10 will make an explicit request, and 1 will die by it,” she said.

Amyotrophic lateral sclerosis (ALS) is the disease tied to the highest number of assisted suicide requests, Dr. Ganzini said. Compared with other patients, ALS patients in Oregon have an odds ratio above 20 for dying by assisted suicide.

A study she and her associates conducted with 100 ALS patients showed that a sense of hopelessness was an important predictor of interest in obtaining a lethal prescription.

Dr. Ganzini is now studying patients who are in the process of making legal requests. “They are really focused on what is coming down the road, how intolerable it will be, and how it will make their lives not worth living when it happens,” she said. She noted that no patient complained of physical symptoms worse than 2 on a scale of 1–5 when they made their requests, but that they feared worsening symptoms as the disease progressed.

In another study with cancer patients, growing dissatisfaction with medical care was a leading predictor of interest in assisted suicide, and perhaps the interest reflected hopelessness, she added.

Depression was expected to be the biggest risk factor for assisted suicide requests, Dr. Ganzini said. In addition to the patient having to provide two oral requests and one written request, Oregon's law requires that patients be screened by a psychiatrist or psychologist if depression is suspected.

Yet physicians surveyed by Dr. Ganzini ranked the prevalence of depression at about 20% of patients making a request (N. Engl. J. Med. 2000;342:557–63). Hospice social workers and nurses also put depression among the least important reasons for requests (N. Engl. J. Med. 2002;347:582–8).

In her current study, she reported that only 6 of 46 patients requesting assisted suicide met criteria for a major depressive disorder in structured clinical interviews. Even patients who felt hopeless were not depressed.

“I remain very perplexed. I still don't know why there are not more depressed people making a request,” Dr. Ganzini said. But she has a few theories that might explain why investigators don't find more depression. “I have no empirical data to support it, but people who go through this process have to be very physically fit, determined, convincing, and articulate. I think depressed people, particularly if they are physically ill people, may get left behind in this process.”

Another concern that arose before the passage of the Death with Dignity Act was that the act might undermine efforts to improve hospice or palliative care. Instead, 86% of assisted suicides occurred in hospice patients, Dr. Ganzini said.

Opposition to the law remains fairly strong. About 42% of hospice chaplains and a third of hospice nurses oppose the law, she said. Yet few said they would actively oppose it with a patient, and no chaplain would seek transfer of a patient who requested assisted suicide.

“Even though they oppose suicide, their moral feelings about abandoning the patient are stronger,” she said, adding that the chaplains said providing nonjudgmental support was the most effective way to help change a person's mind.

The Oregon experience highlights “a very rarified group” of people whose needs are not generalizable but should not be ignored, Dr. Ganzini concluded. As an example, she cited Annie, who stopped hospice services after 13 days, saying, “They [the staff] are really nice, but I just hate it when other people tell me what to do.”

The one-size-fits-all hospice care model actually does not fit everyone, Dr. Ganzini said. “I think hospice and palliative care have to change to individualize the treatment they offer.”

'Some people want to leave this world in the driver's seat. That's their major goal.' DR. GANZINI