Aid-in-dying laws seek to reconcile patient autonomy with ethical concerns

As Hawaii becomes the sixth state to legalize terminally ill patients to decide to end their own lives with medical assistance, ethical debates over the clinician’s oath to preserve life vs. the patient’s rights to make medical decisions have resurfaced.

California, Colorado, Oregon, Vermont and Washington, plus Washington, D.C., have passed “Death with Dignity” statutes. The Oregon Death with Dignity Act, which was enacted in 1997, has served as the model for these laws. While there appears to be an ongoing momentum toward considering these laws across the country, it remains a complex ethical issue for patients, their families and physicians.

“We know, of course, that the politics of this are very deeply felt, and often are very polarizing,” said Thomas B. Strouse, MD, a palliative care physician and medical director of the Stewart and Lynda Resnick Neuropsychiatric Hospital at UCLA. “So, I would imagine that unless there were a Supreme Court decision that asserted that this was a fundamental right of individuals, and more specifically for this country, I think there will continue to be very conservative states where it is not available.”

The states that have already enacted such legislation offer valuable insight for clinicians who will soon face difficult decisions in Hawaii and in other states considering such legislation.

California’s End of Life Option Act (EOLOA), a law allowing qualified adults with a terminal disease to request aid-in-dying drugs from their physicians, took effect on June 9, 2016. Since that time, 111 patients have used this option to assist them in ending their lives.

However, on May 15, Judge Daniel A. Ottolia overturned the legislation, reasoning that it was passed improperly, according to the Huffington Post. California Attorney General Xavier Becerra filed an appeal against Ottolia’s ruling on May 21.

During the first year of the law’s passage in California, researchers at Kaiser Permanente Southern California conducted a study aimed at chronicling and characterizing various aspects of its implementation: how, why, and by whom the option was used; how it was carried out; and lessons learned from the first year of real-world experience.

The knowledge and understanding gained from the EOLOA was felt not only by Kaiser Permanente researchers, but by physicians and providers across the state. According to Strouse, even patients who ultimately did not take the drug offered under the act benefited from meaningful end-of-life reckoning and introspection.

“The implementation of the law has provided an opportunity for us to understand what’s motivating people,” Strouse told Healio Internal Medicine. “The system we’ve built, which includes case managers who shepherd patients and their families through the process, provides the opportunity for the patient to talk with their loved ones about their life, and its meaning, and what they define as a life worth living. People really need that process of elucidation, or self-awareness, which sadly is not available to most people with serious illness in this country.”

A “descriptive narrative”

One goal of the Kaiser Permanente study was to parse the characteristics of the patient population in California who sought out and/or proceeded with the EOLOA, according to Tracey A, Bush, MSW, LCSW, Regional Practice Leader of Medical Social Work/End of Life Option Act and study researcher.

“I think mainly what we wanted to see is what this implementation looked like in an integrated health system, which we are,” Bush said. “We really wanted to describe who these patients are who are pursuing this option. Obviously, in Oregon and Washington, this has been a law for some time. The demographics there are very different than in southern California. We wanted to do a sort of descriptive narrative of what these patients look like and what their reasons were for pursuing the End of Life Option Act.”
Most of the patients (74%) in the Kaiser study who sought the EOLOA had cancer, and most had received care mainly from specialists within the previous 12 months. The majority were already enrolled in hospice or palliative care.

“The other thing that was interesting for our patient population is that about 75% of patients who received the medications actually ingested them, which is higher than some of the other prior studies, which I think were about 59%, 60%,” Bush said.

She said she and her colleagues are not certain of the exact reason for this higher rate of follow-through among the individuals in the Kaiser Permanente study. She said it has been hypothesized that it may be related to a longer follow-up time. While the study assessed the first year of the EOLOA’s implementation, which ended in June 2017, the researchers continued to review patient records through August 2017.

Another possibility, Bush said, was that the Kaiser program provided patients with intensive social work intervention, even prior to the first visit with the physician to request an Aid in Dying Medication.

“I think that is unique compared to some other implementation strategies. The social worker was really assessing the patient’s family support, their reasons for pursuing the option,” she said. “He really assessed the patients for depression, to be sure that depression wasn’t a driving factor. So, when that patient actually gets to the appointment with the physician, they’ve had some support. They’ve had some assessments already done, and they’ve already thought about why they’re pursuing this.”

Unexpected findings

One surprising finding in characterizing the patient population in the study was the lack of heterogeneity among patients who pursued the option, Bush said.

“The majority of patients who pursued this were white – 80% of the patients who made that first oral request to their physicians were white patients,” she said. “I don’t think we were expecting that, given the very diverse population we serve in Southern California. I think we would have probably anticipated that the End of Life Option patients would mirror our population, but that’s not what happened.”

The patient population was also slightly more weighted toward male patients, with 56% of the patients being men.

In addition to the disparity in race, the study also revealed an overwhelming prevalence (93%) of English-speaking participants, Bush said. Again, given the wide range of languages spoken in southern California, this finding was a surprise.

“The patients were also very educated,” she said. “When we put all of these factors together, we start to see the patient who pursues the option as more educated and more well-off socioeconomically speaking.”

While the researchers did not determine the reasons for the disproportionate representation of these patients, they had some hypotheses.

“Maybe patients who don’t speak English or come from immigrant communities, or patients who are minorities might not pursue this because perhaps their health care decision-making is done in a different way,” Bush said. “Maybe for these groups, it is more of a family decision, not as individualistic.”

Another possibility is that these patient groups may not have been aware that the EOLOA is an option available to them. Bush noted that although information about the option was made widely available, the outlets through which it was advertised may have been skewed toward English-speaking residents of the community.

“There was a lot of media coverage in California, but the thing you have to think about is, would patients of color or non-English speakers have been consumers of the media outlets that did the majority of the coverage, such as The LA Times or CNN?” Bush said. “These are English language media outlets. The question then becomes if a patient who didn’t speak or read English, or who wasn’t well educated, would have been as aware.”

Information on the EOLOA was not made available in doctors’ offices or clinics, Bush said, because neutrality is an essential aspect of the act.
“The process as we’ve implemented it requires that the patient initiate the conversation,” she said.

Another interesting finding from the Kaiser Permanente study was that about 20% of the patients who made an initial inquiry about the option ultimately died or became too ill to proceed with the process. This suggests that patients were waiting until late in their disease processes to act on the option. Bush acknowledged that some of these patients were simply waiting for the law to take effect in California.

“It will be interesting, going forward, to see if that number stays the same, whether that same percentage of patients would die or become too ill to proceed with their requests,” she said.

Lessons learned

Bush said that there were many lessons learned, both validating and cautionary, from the first year of the EOLOA’s implementation. One thing the researchers learned was that the use of licensed social workers as navigators and coordinators had significant benefit to both patients and their families.

“I really think the social worker helps patients and family to understand the process, all the legalities, everything they have to do according to law,” she said. “We learned that that was definitely a positive thing that we and some other organizations did.”

In terms of lessons on what could be done differently, Bush said she and her colleagues now know to provide more debriefing and support for physicians participating in the EOLOA.

“We definitely had debriefing as part of our process, but it wasn’t formalized, nor was it required for the clinical staff, meaning the physicians, nurses and hospice team who were caring for these patients,” she said. “It’s a very difficult, emotional decision for the entire team, but especially for the physicians who are the ones to write that prescription. They really need that opportunity to debrief about what that process was like.”

She said for physicians, it is difficult to reconcile writing an EOLOA prescription with their overall directive to save lives. For this reason, Kaiser Permanente has now built this debriefing process into the system at a more formal level.

“It’s difficult for physicians to lose a patient, even if they’re a hospice patient,” she said. “They’re practicing medicine to cure patients from disease, and to palliate their symptoms, not to allow the patient to hasten their deaths. Even though these are terminally ill patients, that can be a difficult decision for a physician to make.”

The power of words

Although states like California have reported positive experiences in their first year of EOLOA implementation, the overall concept of medical aid-in-dying is met with concern and discomfort by many physicians and physician groups. These concerns, which arise from the idea that aid in dying is equivalent to assisted suicide, have sparked debate and delayed legislation in many states.

In Massachusetts, legislators are considering end-of-life legislation for the eighth time since 1995. According to Death with Dignity’s web site, none of these bills made it out of committee. The most recent bill, H 1194, was introduced by Massachusetts State Representative Louis Kafka, D-Stoughton, along with 44 cosponsors, on January 27, 2017. A companion bill (S 1225) was introduced in the Senate on the same day by Senator Barbara L’Italien.

In December 2017, at its Interim Meeting, the Massachusetts Medical Society’s House of Delegates adopted into policy a resolution regarding medical aid-in-dying for the terminally ill.

In the resolution, the Society retracted its longstanding opposition to physician assisted suicide. The new position is that of neutral engagement, which allows the society to offer medical and scientific resources, such as education and advocacy, without requiring physicians to participate in medical aid-in-dying. The resolution specifies that physicians should not be required to be involved in prescribing legal doses of medication if it violates their ethical principles.

“The original position of the House of Delegates, which is the body that makes policy for the Medical Society, was against what was at that time called physician-assisted suicide,” Henry Lawrence Dorkin, MD, President of the MMS, told Healio Internal Medicine. “In the time since then, a resolution was put forward by the MMS in which we no longer oppose it, but do not support it.”

Dorkin said the proponents of medical aid-in-dying – defined as a physician writing a prescription for a lethal dose of medication for a terminally ill adult to take at such time as they see fit – do not believe this act constitutes suicide.

“They claim it is a rational decision as an alternative form of end-of-life care,” he said. The term was then changed to ‘medical aid-in-dying,’ which was met with just as much opposition from those who were against it.”

Dorkin said doctors who took exception to the term ‘medical aid in dying’ felt this term implied that unless a physician was willing to write a prescription for a lethal medication, they were against medical aid-in-dying, which takes various forms.

“Those who were against it argued that there many things we already do that constitute medical aid-in-dying, such as palliative care,” Dorkin said. “We spent a great deal of time just discussing the nuances of the etymology.”

In 2016, with the goal of gaining further information about MMS members’ views on potentially changing the Society’s position on medical aid-in-dying, the House of Delegates directed the officers and staff of the MMS to conduct an anonymous survey of its members. The Society first contacted states that had already enacted such laws, asking them about their processes, observations, and lessons learned.

“We took that information, and we hired a consultant with expertise in surveys among physicians,” Dorkin said. “We held focus groups throughout the Commonwealth of Massachusetts for some groups opposed to this, and some in favor, to get their points of view. Then we put together an extensive survey, paying a great deal of attention to the specifics of the wording.”

The survey was open for 6 weeks, Dorkin said. At the end of that time, the MMS had received responses from only 13% of the 25,000 surveys that had been mailed. Dorkin said he is not willing to interpret why the response was so low.

“The survey is only a piece of data that was used by the delegates, who eventually voted in whatever way they felt,” he said. “Some of them put great stock in the results, others put very little stock in it. Surveys do not determine the policy of the Massachusetts Medical Society. The vote of the House of Delegates does, and this is a piece of information that the House of Delegates had requested to look at the question, and that’s what we gave them.”

Dorkin said as medical aid-in-dying legislation is considered in Massachusetts, the MMS will continue to be part of the conversation around the issue.

“This is not the end of this discussion, this was a step moving forward,” he said. “The Medical Society will continue to be aware of discussions about this, both at the local, state and national level, and will, in a thoughtful manner, play its appropriate role.”

Ethical concerns

Because of the sensitivity and ethical considerations surrounding this issue, the California law is written with various safeguards to ensure it is implemented properly. To be eligible to even begin the process, a patient must have a terminal disease, be mentally sound, and be able to ingest the medication.

According to Strouse, who has been involved in the implementation of the EOLOA at UCLA, it is also essential that the patient initiate the process.

“The way the law is written is that patients are obligated to initiate the discussion with their doctor,” he said. “Generally, if a patient is asking about it, they presumably would like to understand what the full range of options would be for them if they are facing life-limiting or serious illness, whether or not they go down the complicated legal pathway of obtaining a lethal prescription.”

The drug is an oral formulation and the requirement that patients be able to ingest it themselves has raised the issue of discrimination against patients who are unable to swallow due to their disease, Strouse said.

“The example that often comes up is people with progressive ALS who lose motor function, and technically therefore are not able to self-ingest,” he said.
He said other groups caution against doctors using the law to in any way project their interpretations of what constitutes quality-of-life.

“There’s a very active perspective from various groups of people with disabilities, or groups within the population who feel disenfranchised due to socioeconomic status, or ethnicity, or race, who have expressed concerns that this would become a way of defining some peoples’ lives as less worthy than others,” he said. “The concern is that somehow doctors, nurses or other providers would communicate the message to these individuals that their lives are not worth living, and would either too willingly participate in providing them with access to aid-in-dying if they sought it, or might somehow foist it upon them, or exert other kinds of bias, such as not offering other treatments.”

A matter of autonomy

Strouse said fortunately, there has been no evidence that such undue influence or judgement is occurring. To the contrary, he has found that far from being coerced, these patients are often very thoughtful and certain of what they want for the end of their lives.

“These are patients who have maybe had a cancer or other progressive illness for a decade or more and have been thinking about this for a long time,” he said. “These are patients who have been hoping this would become available in California, and knowing that if it did, they would want to have access to it.”

He cited California’s governor, Jerry Brown, Democrat, who, before entering the political arena, pursued training as a Jesuit priest.

“He said it best when he described how he resolved the potential dilemma between his religious training and his personal morals,” he said. “He said this is ultimately about autonomy and self-determination, and the right to choose for oneself.” – by Jennifer Byrne

Editor's note: This story has been updated to include the negative ruling on California's EOLOA that took place on May 15 and the appeal of the ruling that took place on May 21.

Reference:

Nguyen HQ. JAMA Intern Med. 2017;doi:10.1001/jamainternmed.2017.7728.

Disclosure: Bush reports no relevant disclosures. Dorkin reports no relevant disclosures. Strouse reports no relevant disclosures.

For More Information:

Tracey A. Bush, MSW, LCSW, can be reached at 393 E. Walnut St., 6th Floor/64W19, Pasadena, Calif. 91188; email: tracey.a.bush@kp.org.

Henry Lawrence Dorkin, MD, can be reached at MMS Headquarters, 860 Winter Street Waltham Woods Corporate Center, Waltham, MA 02451-1411; email: kconnors@mms.org (contact person Kate Connors).

Thomas B. Strouse, MD can be reached at 60 Westwood Plaza, Los Angeles, Calif, 90024; email: tstrouse@mednet.ucla.edu.

As Hawaii becomes the sixth state to legalize terminally ill patients to decide to end their own lives with medical assistance, ethical debates over the clinician’s oath to preserve life vs. the patient’s rights to make medical decisions have resurfaced.

California, Colorado, Oregon, Vermont and Washington, plus Washington, D.C., have passed “Death with Dignity” statutes. The Oregon Death with Dignity Act, which was enacted in 1997, has served as the model for these laws. While there appears to be an ongoing momentum toward considering these laws across the country, it remains a complex ethical issue for patients, their families and physicians.

“We know, of course, that the politics of this are very deeply felt, and often are very polarizing,” said Thomas B. Strouse, MD, a palliative care physician and medical director of the Stewart and Lynda Resnick Neuropsychiatric Hospital at UCLA. “So, I would imagine that unless there were a Supreme Court decision that asserted that this was a fundamental right of individuals, and more specifically for this country, I think there will continue to be very conservative states where it is not available.”

The states that have already enacted such legislation offer valuable insight for clinicians who will soon face difficult decisions in Hawaii and in other states considering such legislation.

California’s End of Life Option Act (EOLOA), a law allowing qualified adults with a terminal disease to request aid-in-dying drugs from their physicians, took effect on June 9, 2016. Since that time, 111 patients have used this option to assist them in ending their lives.

However, on May 15, Judge Daniel A. Ottolia overturned the legislation, reasoning that it was passed improperly, according to the Huffington Post. California Attorney General Xavier Becerra filed an appeal against Ottolia’s ruling on May 21.

During the first year of the law’s passage in California, researchers at Kaiser Permanente Southern California conducted a study aimed at chronicling and characterizing various aspects of its implementation: how, why, and by whom the option was used; how it was carried out; and lessons learned from the first year of real-world experience.

The knowledge and understanding gained from the EOLOA was felt not only by Kaiser Permanente researchers, but by physicians and providers across the state. According to Strouse, even patients who ultimately did not take the drug offered under the act benefited from meaningful end-of-life reckoning and introspection.

PAGE BREAK

“The implementation of the law has provided an opportunity for us to understand what’s motivating people,” Strouse told Healio Internal Medicine. “The system we’ve built, which includes case managers who shepherd patients and their families through the process, provides the opportunity for the patient to talk with their loved ones about their life, and its meaning, and what they define as a life worth living. People really need that process of elucidation, or self-awareness, which sadly is not available to most people with serious illness in this country.”

A “descriptive narrative”

One goal of the Kaiser Permanente study was to parse the characteristics of the patient population in California who sought out and/or proceeded with the EOLOA, according to Tracey A, Bush, MSW, LCSW, Regional Practice Leader of Medical Social Work/End of Life Option Act and study researcher.

“I think mainly what we wanted to see is what this implementation looked like in an integrated health system, which we are,” Bush said. “We really wanted to describe who these patients are who are pursuing this option. Obviously, in Oregon and Washington, this has been a law for some time. The demographics there are very different than in southern California. We wanted to do a sort of descriptive narrative of what these patients look like and what their reasons were for pursuing the End of Life Option Act.”
Most of the patients (74%) in the Kaiser study who sought the EOLOA had cancer, and most had received care mainly from specialists within the previous 12 months. The majority were already enrolled in hospice or palliative care.

“The other thing that was interesting for our patient population is that about 75% of patients who received the medications actually ingested them, which is higher than some of the other prior studies, which I think were about 59%, 60%,” Bush said.

She said she and her colleagues are not certain of the exact reason for this higher rate of follow-through among the individuals in the Kaiser Permanente study. She said it has been hypothesized that it may be related to a longer follow-up time. While the study assessed the first year of the EOLOA’s implementation, which ended in June 2017, the researchers continued to review patient records through August 2017.

Another possibility, Bush said, was that the Kaiser program provided patients with intensive social work intervention, even prior to the first visit with the physician to request an Aid in Dying Medication.

“I think that is unique compared to some other implementation strategies. The social worker was really assessing the patient’s family support, their reasons for pursuing the option,” she said. “He really assessed the patients for depression, to be sure that depression wasn’t a driving factor. So, when that patient actually gets to the appointment with the physician, they’ve had some support. They’ve had some assessments already done, and they’ve already thought about why they’re pursuing this.”

PAGE BREAK

Unexpected findings

One surprising finding in characterizing the patient population in the study was the lack of heterogeneity among patients who pursued the option, Bush said.

“The majority of patients who pursued this were white – 80% of the patients who made that first oral request to their physicians were white patients,” she said. “I don’t think we were expecting that, given the very diverse population we serve in Southern California. I think we would have probably anticipated that the End of Life Option patients would mirror our population, but that’s not what happened.”

The patient population was also slightly more weighted toward male patients, with 56% of the patients being men.

In addition to the disparity in race, the study also revealed an overwhelming prevalence (93%) of English-speaking participants, Bush said. Again, given the wide range of languages spoken in southern California, this finding was a surprise.

“The patients were also very educated,” she said. “When we put all of these factors together, we start to see the patient who pursues the option as more educated and more well-off socioeconomically speaking.”

While the researchers did not determine the reasons for the disproportionate representation of these patients, they had some hypotheses.

“Maybe patients who don’t speak English or come from immigrant communities, or patients who are minorities might not pursue this because perhaps their health care decision-making is done in a different way,” Bush said. “Maybe for these groups, it is more of a family decision, not as individualistic.”

Another possibility is that these patient groups may not have been aware that the EOLOA is an option available to them. Bush noted that although information about the option was made widely available, the outlets through which it was advertised may have been skewed toward English-speaking residents of the community.

“There was a lot of media coverage in California, but the thing you have to think about is, would patients of color or non-English speakers have been consumers of the media outlets that did the majority of the coverage, such as The LA Times or CNN?” Bush said. “These are English language media outlets. The question then becomes if a patient who didn’t speak or read English, or who wasn’t well educated, would have been as aware.”

PAGE BREAK

Information on the EOLOA was not made available in doctors’ offices or clinics, Bush said, because neutrality is an essential aspect of the act.
“The process as we’ve implemented it requires that the patient initiate the conversation,” she said.

Another interesting finding from the Kaiser Permanente study was that about 20% of the patients who made an initial inquiry about the option ultimately died or became too ill to proceed with the process. This suggests that patients were waiting until late in their disease processes to act on the option. Bush acknowledged that some of these patients were simply waiting for the law to take effect in California.

“It will be interesting, going forward, to see if that number stays the same, whether that same percentage of patients would die or become too ill to proceed with their requests,” she said.

Lessons learned

Bush said that there were many lessons learned, both validating and cautionary, from the first year of the EOLOA’s implementation. One thing the researchers learned was that the use of licensed social workers as navigators and coordinators had significant benefit to both patients and their families.

“I really think the social worker helps patients and family to understand the process, all the legalities, everything they have to do according to law,” she said. “We learned that that was definitely a positive thing that we and some other organizations did.”

In terms of lessons on what could be done differently, Bush said she and her colleagues now know to provide more debriefing and support for physicians participating in the EOLOA.

“We definitely had debriefing as part of our process, but it wasn’t formalized, nor was it required for the clinical staff, meaning the physicians, nurses and hospice team who were caring for these patients,” she said. “It’s a very difficult, emotional decision for the entire team, but especially for the physicians who are the ones to write that prescription. They really need that opportunity to debrief about what that process was like.”

PAGE BREAK

She said for physicians, it is difficult to reconcile writing an EOLOA prescription with their overall directive to save lives. For this reason, Kaiser Permanente has now built this debriefing process into the system at a more formal level.

“It’s difficult for physicians to lose a patient, even if they’re a hospice patient,” she said. “They’re practicing medicine to cure patients from disease, and to palliate their symptoms, not to allow the patient to hasten their deaths. Even though these are terminally ill patients, that can be a difficult decision for a physician to make.”

The power of words

Although states like California have reported positive experiences in their first year of EOLOA implementation, the overall concept of medical aid-in-dying is met with concern and discomfort by many physicians and physician groups. These concerns, which arise from the idea that aid in dying is equivalent to assisted suicide, have sparked debate and delayed legislation in many states.

In Massachusetts, legislators are considering end-of-life legislation for the eighth time since 1995. According to Death with Dignity’s web site, none of these bills made it out of committee. The most recent bill, H 1194, was introduced by Massachusetts State Representative Louis Kafka, D-Stoughton, along with 44 cosponsors, on January 27, 2017. A companion bill (S 1225) was introduced in the Senate on the same day by Senator Barbara L’Italien.

In December 2017, at its Interim Meeting, the Massachusetts Medical Society’s House of Delegates adopted into policy a resolution regarding medical aid-in-dying for the terminally ill.

In the resolution, the Society retracted its longstanding opposition to physician assisted suicide. The new position is that of neutral engagement, which allows the society to offer medical and scientific resources, such as education and advocacy, without requiring physicians to participate in medical aid-in-dying. The resolution specifies that physicians should not be required to be involved in prescribing legal doses of medication if it violates their ethical principles.

“The original position of the House of Delegates, which is the body that makes policy for the Medical Society, was against what was at that time called physician-assisted suicide,” Henry Lawrence Dorkin, MD, President of the MMS, told Healio Internal Medicine. “In the time since then, a resolution was put forward by the MMS in which we no longer oppose it, but do not support it.”

PAGE BREAK

Dorkin said the proponents of medical aid-in-dying – defined as a physician writing a prescription for a lethal dose of medication for a terminally ill adult to take at such time as they see fit – do not believe this act constitutes suicide.

“They claim it is a rational decision as an alternative form of end-of-life care,” he said. The term was then changed to ‘medical aid-in-dying,’ which was met with just as much opposition from those who were against it.”

Dorkin said doctors who took exception to the term ‘medical aid in dying’ felt this term implied that unless a physician was willing to write a prescription for a lethal medication, they were against medical aid-in-dying, which takes various forms.

“Those who were against it argued that there many things we already do that constitute medical aid-in-dying, such as palliative care,” Dorkin said. “We spent a great deal of time just discussing the nuances of the etymology.”

In 2016, with the goal of gaining further information about MMS members’ views on potentially changing the Society’s position on medical aid-in-dying, the House of Delegates directed the officers and staff of the MMS to conduct an anonymous survey of its members. The Society first contacted states that had already enacted such laws, asking them about their processes, observations, and lessons learned.

“We took that information, and we hired a consultant with expertise in surveys among physicians,” Dorkin said. “We held focus groups throughout the Commonwealth of Massachusetts for some groups opposed to this, and some in favor, to get their points of view. Then we put together an extensive survey, paying a great deal of attention to the specifics of the wording.”

The survey was open for 6 weeks, Dorkin said. At the end of that time, the MMS had received responses from only 13% of the 25,000 surveys that had been mailed. Dorkin said he is not willing to interpret why the response was so low.

“The survey is only a piece of data that was used by the delegates, who eventually voted in whatever way they felt,” he said. “Some of them put great stock in the results, others put very little stock in it. Surveys do not determine the policy of the Massachusetts Medical Society. The vote of the House of Delegates does, and this is a piece of information that the House of Delegates had requested to look at the question, and that’s what we gave them.”

PAGE BREAK

Dorkin said as medical aid-in-dying legislation is considered in Massachusetts, the MMS will continue to be part of the conversation around the issue.

“This is not the end of this discussion, this was a step moving forward,” he said. “The Medical Society will continue to be aware of discussions about this, both at the local, state and national level, and will, in a thoughtful manner, play its appropriate role.”

Ethical concerns

Because of the sensitivity and ethical considerations surrounding this issue, the California law is written with various safeguards to ensure it is implemented properly. To be eligible to even begin the process, a patient must have a terminal disease, be mentally sound, and be able to ingest the medication.

According to Strouse, who has been involved in the implementation of the EOLOA at UCLA, it is also essential that the patient initiate the process.

“The way the law is written is that patients are obligated to initiate the discussion with their doctor,” he said. “Generally, if a patient is asking about it, they presumably would like to understand what the full range of options would be for them if they are facing life-limiting or serious illness, whether or not they go down the complicated legal pathway of obtaining a lethal prescription.”

The drug is an oral formulation and the requirement that patients be able to ingest it themselves has raised the issue of discrimination against patients who are unable to swallow due to their disease, Strouse said.

“The example that often comes up is people with progressive ALS who lose motor function, and technically therefore are not able to self-ingest,” he said.
He said other groups caution against doctors using the law to in any way project their interpretations of what constitutes quality-of-life.

“There’s a very active perspective from various groups of people with disabilities, or groups within the population who feel disenfranchised due to socioeconomic status, or ethnicity, or race, who have expressed concerns that this would become a way of defining some peoples’ lives as less worthy than others,” he said. “The concern is that somehow doctors, nurses or other providers would communicate the message to these individuals that their lives are not worth living, and would either too willingly participate in providing them with access to aid-in-dying if they sought it, or might somehow foist it upon them, or exert other kinds of bias, such as not offering other treatments.”

PAGE BREAK

A matter of autonomy

Strouse said fortunately, there has been no evidence that such undue influence or judgement is occurring. To the contrary, he has found that far from being coerced, these patients are often very thoughtful and certain of what they want for the end of their lives.

“These are patients who have maybe had a cancer or other progressive illness for a decade or more and have been thinking about this for a long time,” he said. “These are patients who have been hoping this would become available in California, and knowing that if it did, they would want to have access to it.”

He cited California’s governor, Jerry Brown, Democrat, who, before entering the political arena, pursued training as a Jesuit priest.

“He said it best when he described how he resolved the potential dilemma between his religious training and his personal morals,” he said. “He said this is ultimately about autonomy and self-determination, and the right to choose for oneself.” – by Jennifer Byrne

Editor's note: This story has been updated to include the negative ruling on California's EOLOA that took place on May 15 and the appeal of the ruling that took place on May 21.

Reference:

Nguyen HQ. JAMA Intern Med. 2017;doi:10.1001/jamainternmed.2017.7728.

Disclosure: Bush reports no relevant disclosures. Dorkin reports no relevant disclosures. Strouse reports no relevant disclosures.

For More Information:

Tracey A. Bush, MSW, LCSW, can be reached at 393 E. Walnut St., 6th Floor/64W19, Pasadena, Calif. 91188; email: tracey.a.bush@kp.org.

Henry Lawrence Dorkin, MD, can be reached at MMS Headquarters, 860 Winter Street Waltham Woods Corporate Center, Waltham, MA 02451-1411; email: kconnors@mms.org (contact person Kate Connors).

Thomas B. Strouse, MD can be reached at 60 Westwood Plaza, Los Angeles, Calif, 90024; email: tstrouse@mednet.ucla.edu.