By Claudia Chiappa
Boston University Statehouse Program
BOSTON – Massachusetts is once again considering aid-in-dying bills, proposed legislation which has historically divided the state – and the country.
Two bills introduced in the Statehouse reopened the conversation earlier this year, sparking energetic testimony. Considered by many a morally controversial topic, physician-assisted death remains nonetheless a highly debated issue all over the world.
Several countries worldwide have laws which either fully or partially allow doctors to assist patients with end-of-life options. As of 2021, 10 American states and the District of Columbia have passed legislation allowing some level of doctor-assisted death. This includes two Massachusetts neighbors, Vermont and Maine. New Jersey was the latest state to adopt aid-in-dying legislation in 2019.
These types of laws come with many names: “death with dignity”; “right-to-die”; “aid-in-dying.” And just as their names differ, so does their content. But they are all based on the same principle: sane, consenting adults with terminal conditions should have the option to end their lives.
“We only get one death, each of us,” said Peg Sandeen, Executive Director of Death with Dignity in Portland, Oregon. “And that’s why I believe in making sure that we have the autonomy and a number of decisions to have as much control that we can have at the end of life.”
Oregon’s Death with Dignity Act of 1996 is seen by experts as a blueprint for many of the state laws. The legislation passed narrowly, with 51%, making Oregon the first American state to allow physicians to prescribe aid-in-dying medications.
“It has worked flawlessly,” said Sandeen. “What we’re doing is granting a right to one group of individuals but harming no one else.”
In Massachusetts, 70% of state residents support medical aid-in-dying, according to a 2020 poll conducted by the Boston Globe and Suffolk University. According to the same poll, 74% of those polled said they would want doctors to stop treating them if they had an incurable disease and were in “terrible pain.”
Yet the state Legislature has rejected multiple attempts to introduce “death with dignity” bills over the years.
Over the last two decades, several bills to legalize physician assisted death were introduced. The most recent attempt to bring Massachusetts up to speed with other states was in 2020. Those bills advanced from the Legislature’s Committee on Public Health in May 2020, but ultimately did not pass during the legislative session.
Prior to that, a ballot measure to legalize aid in dying was narrowly defeated at 51% to 49% in the 2012 general election.
In March, two new bills were introduced: H. 2381, sponsored by Rep. James O’Day, D-West Boylston, and Rep. John Mahoney, D-Worcester, and S.1384, sponsored by Sen. Jo Comerford, D-Northampton. This bill is sponsored by 84 members of the Massachusetts Legislature, with 67 House members and 17 senators. A hearing was held virtually Oct. 1 by the Legislature’s Committee on Public Health.
“Those are big numbers,” said Comerford, Senate chair of the committee. “That represents both a cohort of legislators who are tuned in but it also represents a great advocacy community, asking us to pay attention.”
The bill would allow eligible adult Massachusetts residents to receive aid-in-dying medication from a doctor, but only after following a series of steps. Before a patient can request the medication, which must be submitted in writing, they must consult with a physician and a licensed mental health professional. They must also be able to take the aid-in-dying medication themselves.
The process is often lengthy and structured to ensure patients who gain access to the medication have been cleared by several physicians and mental health professionals. They also require the patients to have a prognosis of six months or less to live in order to be eligible and wait periods in between requests.
“There’s nothing cavalier about the work on this bill,” said Comerford.
One of the most recent provisions added to the bill ensures that people who would financially benefit from the death of the patient, such as family members, are prohibited from witnessing the decision. This is only one of the many provisions legislators have woven into the bill in an attempt to ensure patients are protected.
“There’s two big misconceptions,” Comerford said. “One is that people don’t understand the very, very, very, very, very, very, very narrow cohort of people for whom this would be applicable…. And then they also haven’t read the version of the bill I filed and that we’re actually talking about with layers of protections in it.”
While these compromises are well-received by some, other proponents fear that it may reduce its accessibility.
“Medicine is not politics,” Sandeen said. “Medicine is medicine. And so we want to make sure you know, if there’s any sort of compromise that goes on legislatively, that we still have a process that patients can navigate and patients get access.”
A 2020 Gallup poll found that 61% of Americans supported doctor-assisted death for patients living in severe pain with an incurable disease. While over 60% of Americans supported the practice, only 51% of the respondents said they thought it was “morally acceptable.” The poll, which was conducted via phone in May 2020, surveyed a total of 1,028 adults living in all U.S. states and has a margin of sampling error of plus or minus 4%.
At the October hearing, many who spoke in favor of the bill shared personal stories and reiterated that the bill ultimately boils down to giving people a choice.
“If there’s one thing that binds us all together, it’s our mortality,” Rep. Jake Oliveira D-Ludlow, said during the hearing. “The one thing we all face is end of life. These two bills provide options to the individuals as we face end-of-life options for people with terminal illnesses.”
Having this option is often enough comfort for patients, even if they ultimately decide not to take the medication.
States with aid-in-dying laws are required to publish annual statistical reports about the physicians and the patients. Surprisingly, according to Death with Dignity and these reports, around one-third of the people who obtain the medication ultimately never take it.
“What we’ve learned is that for some people, the medication is simply peace of mind,” Sandeen said. “It’s about having just one more choice when you’re terminally ill, just one more option.”
But while public support and a growing number of legislators seem to overwhelmingly support the bill, the opposition is not scarce either.
John Kelly, director of the disability rights group Second Thoughts Massachusetts and New England Regional Director of Not Dead Yet, said his organizations have been fighting against aid-in-dying bills for years.
“The proponents say that it’s about pain and suffering,” said Kelly. “But it’s almost never about pain. It’s about dignity and control.”
Terminology has been a focal point for many of the discussions surrounding aid-in-dying laws. Sandeen said that terms such as doctor-assisted suicide are often used as tactics to scare the public.
“The opponents’ messaging is all about trying to scare people away from it,” Sandeen said.
But the critics often reject the idea of “death with dignity.”
“The words of dignity, mercy, compassion are used to disguise the taking of one’s life, suicide,” Rep. Alan Silvia, D-Fall River, said during the hearing.
A recurring concern from the opponents is that the choice to end one’s life, while marketed as an individual one, is never truly individual, as people can experience pressures from friends and family. People who seek to end their life, said Kelly, do so because they fear being a burden or because they are upset about losing “dignity and social status.”
Ruthie Poole, president of M-POWER, a statewide organization made up of people with “lived experience of mental health diagnosis, trauma, and addiction,” testified that the bill would disproportionately affect people with mental health.
“Suicide contagion is real,” Poole said. “Any assisted suicide program will send the message to people in mental distress – old, young, physically ill or not – that suicide is a reasonable answer to life’s problems. It isn’t.”
Kelly, who has been paralyzed below the shoulders since his 20s, said that the prejudice stacked against people with disabilities and social situations are driving these bills. If passed, he said, they would only reinforce the idea that a life as a disabled person is a life not worth living.
“People who have spent their whole life identifying as able, when they become disabled, they use the same prejudice that they applied against others to themselves,” Kelly said. “Because in this country, if you’re disabled, you’re seen as less than.”
Many opponents of the bill argue that the focus should be on providing better end-of-life care, rather than death. In particular, they noted the COVID-19 pandemic highlighted the disproportionate care received by communities of color and the disability community.
Focusing on providing better choices includes providing financial support to the patients, providing home care, and ensuring they do not have to rely on their families at the end of their lives.
“As palliative care experts say, there’s always more that you can do,” Kelly said. “What we think is that palliative care should be improved and everyone should have the same rights to counseling, spiritual guidance, pain relief.”
The fear that patients would choose to end their lives for the wrong reasons is a recurring argument from critics of the bill. Dr. Lachlan Forrow, Senior Fellow at the Harvard Medical School Center for Bioethics, past Chair of the Massachusetts Expert Panel on End of Life Care, and a member of the Coordinating Committee of Dignity Alliance Massachusetts, has spoken extensively about the issue, testifying both in 2019 and 2021.
Forrow said the focus should be on ensuring that patients have reliable access to other end-of-life care options, so that they do not choose to end their lives because it is the “last resort” option. As the bill stands right now, he said, it would be “grossly irresponsible” to pass it.
“While it is true, and unconscionable, that far too many people in our commonwealth today nearing the end-of-life experience uncontrolled pain or other physical and emotional suffering, and far too many experience a profound loss of their human dignity, the idea that the solution to these problems is to assist them in ending their lives is seriously misguided,” Forrow said during his testimony.
But Comerford said the two are not mutually exclusive.
“I truly, with all my heart, believe that our work to provide that option for people who are terminally ill does not in any way obscure or preclude the work to advance health equity for individuals in the disability community or for people of color,” Comerford said. “They are not mutually exclusive. We don’t get one and not the other.”
Comerford said she intends to make the bill a priority during the next legislative session. And while the outcome is hard to predict, the reopening of the years-long moral and ethical conversation is bound to dominate the discussions around the bill in the months to come.
Dear Editor:
As a Massachusetts psychiatrist and medical ethicist, I commend Ms. Chiappa for a reasonably balanced presentation of this very controversial issue. I also appreciate that there are people of good will on both sides of the assisted suicide controversy. Nevertheless, I believe the bills before the Massachusetts legislature are masterpieces of misleading euphemisms. They represent a betrayal of medical ethics, and a clear and present danger to our most vulnerable patients. The House bill might well be called, “An Act that Gives Legal Cover to Physicians Who Assist in Their Patients’ Suicide.”
The bill perversely re-defines suicide, exonerating physicians who act under its aegis from the charge of “assisted suicide.” As a psychiatrist for nearly 40 years, I can tell you that when a patient knowingly ingests a lethal medication with the intent of dying, that is suicide. The context of terminal illness may partly explain–but does not alter–that fact. Attempts to separate suicides into “regular” and “assisted”, based on supposed psychological differences, are not well grounded in psychiatric knowledge or experience. In short, suicide is suicide.
Furthermore, the self-administration of a lethal drug does not aid or ease the dying process: it terminates dying by terminating the patient. We have well-established medical interventions for easing a terminally ill patient’s final days, such as the discontinuation of futile life-support, and the provision of state-of-the art palliative care. Lethal drugs don’t ease dying—they merely open the gateway to death.
And contrary to a popular myth, most patients requesting assisted suicide are not experiencing extreme bodily suffering, or excruciating and intractable pain. Data from Oregon show that the vast majority of patients requesting physician-assisted suicide (PAS) fear loss of autonomy; enjoyment, and personal dignity. [1] Many such patients fear becoming a burden to their families. These emotional problems deserve empathic counseling—not death in a bottle. Furthermore, research has shown that when physicians intervene and successfully address issues such as pain, depression, and other medical problems, as many as 46% of patients seeking assisted suicide will change their minds. [2]
I do not believe that psychiatrists or other physicians should collude with the machinery of assisted suicide. That said, the bills’ provisions regarding a mental health evaluation are woefully inadequate. The bill speaks soothingly of “counseling”, but all it calls for is a single determination that the patient is “…not suffering from a psychiatric or psychological disorder or depression causing impaired judgment” and is not subject to “coercion.” There is no requirement for a thorough, face-to-face, psychiatric evaluation to assess subtle cognitive distortions that may fall short of a full-blown disorder.
Indeed, research has shown that some cancer patients requesting assisted suicide have subtle cognitive distortions that are clouding their judgment. [3] In real counseling, these distortions could be addressed and remediated. Furthermore, many terminally ill patients who may not meet criteria for a full-blown psychiatric disorder are nevertheless impaired in their judgment by feelings of despair, anxiety, hopelessness, and demoralization. These emotional states often fluctuate over time, and may compromise genuine autonomy or “authentic voluntarism,” as Dr. Laura Weiss Roberts has explained. [4]
Such cognitive and emotional nuances are unlikely to be detected in a single assessment of a dying patient, and would require a very sophisticated and knowledgeable mental health professional, such as a forensic psychiatrist. The current bills require only a “licensed mental health professional,” which includes a broad range of professions, several of which, in my view, would not have the expertise to detect subtle cognitive and emotional factors that may compromise genuine autonomy.
As for detecting “coercion,” it should be obvious that once the patient leaves the evaluation milieu—returning home, for example—the bills provide no mechanism whatsoever for assessing coercive influences in the family setting, which may push the patient to ingest the lethal drugs. Nor do the bills provide any procedural “safety lock” that would prevent children or others in the family from finding and ingesting the lethal drugs. Finally, the bills contain no requirement that suicidal patients be treated for any diagnosed psychiatric or psychological disorder.
To conclude: the tenets of Hippocratic medicine erect a wall of separation between physicians and assisted suicide. As Dr. Leon Kass has put it, “We must care for the dying, not make them dead.” [5] Accordingly, I urge the legislature and the people of Massachusetts to reject these bills. The real task before us is to provide accessible, state-of-the-art palliative care to our patients with terminal illnesses.
Respectfully,
Ronald W. Pies, MD
Professor Emeritus of Psychiatry, Lecturer on Bioethics & Humanities;
SUNY Upstate Medical University;
Clinical Professor of Psychiatry,
Tufts University School of Medicine;
Editor-in-Chief Emeritus,
Psychiatric Times
1. The most common reasons for requesting medical aid in dying were loss of autonomy (97.2%), inability to engage in enjoyable activities (88.9%), and loss of dignity (75.0%). Loggers ET, Starks H, Shannon-Dudley M, Back AL, Appelbaum FR, Stewart FM. Implementing a Death with Dignity program at a comprehensive cancer center. N Engl J Med. 2013;368(15):1417-1424. doi: 10.1056/NEJMsa1213398.
2. Linda Ganzini et al., “Physicians’ Experiences with the Oregon Death with Dignity Act,” 342 New Eng. J. Med. 557, 557 (2000).
3. For example, Tomer T. Levin, MD, and Allison J. Applebaum, PhD, note that some cancer patients may make erroneous assumptions, like, “No one can help me” or “No one understands what I am going through.” Such cognitive distortions may respond favorably to cognitive behavioral interventions and potentially avert or abort a request for PAS. Levin TT, Applebaum AJ. Acute cancer cognitive therapy. Cogn Behav Pract. 2014;21(4):404-415.
4. Roberts LW. Informed consent and the capacity for voluntarism. Am J Psychiatry. 2002 May;159(5):705-12. doi: 10.1176/appi.ajp.159.5.705. PMID: 11986120.
5. Kass LR. Dehumanization triumphant. Conn Med. 1996;60(10):619-620
The following excerpt from the article demonstrates how out of touch the pro-suicide lobby is:
“It has worked flawlessly,” said Sandeen. “What we’re doing is granting a right to one group of individuals but harming no one else.”
Worked flawlessly? Tell that to loved ones of Barbara Wagner and Randy Stoup just to name two Oregonians who were denied expensive care for their cancers but told by Medicaid of Oregon that suicide pills were a covered benefit.
[…] Read More […]
Dear Editor:
As a fellow human being, I ask those opposed to the Death with Dignity legislation, have you been by the side of someone dying a painful death? Suffering from cancer, ALS, congestive heart failure? Can you imagine drowning in your own body with CHF? It doesn’t have to be a loved one, witness any human being suffering in death. That should be required before you have the right to oppose aid in dying. Palliative care has its limits and end of life care usually involves the use of opioids to manage pain. What is the quality of life then? This legislation is for patients with a prognosis of six months or less to live. How can that be considered suicide? Suicide is a major national public health issue in the United States, but that is a completely separate issue. Again, this legislation is for patients with a prognosis of six months or less to live. Is there a mental health crisis in the United States, some would say yes. But again, this legislation is for patients with a prognosis of six months or less to live. In our society we show more compassion for our pets when they are suffering at the end of their lives.
[…] Medical aid in dying bills split Massachusetts once again – Boston University News Service (bunews… […]