Bioethics Forum Essay
Betty Rollin’s Assisted Death: Unanswered Questions
Network news correspondent and author Betty Rollin died in November at age 87. Surprisingly, there has been little public comment upon how her life ended. Rollin died in Switzerland at Pegasos, a voluntary assisted dying service. The circumstances of her death underscore the confusion over terminology and the uneasiness some feel regarding efforts to legalize assisted dying in New York State and elsewhere in our country.
Rollin may have suspected that her death would draw attention to a cause she had long supported. Her book Last Wish details her role in helping her mother with advanced ovarian cancer die, and she has written that her husband suffered needlessly before he died in 2020.
In contrast to her mother’s and husband’s experiences, though, Rollin had no terminal diagnosis, as Swiss law does not require it. According to her obituary, she suffered from arthritis, unspecified abdominal pain, and persistent sadness over the loss of her husband.
While supporters of medical aid in dying have framed the issue largely as an act of compassion for the incurably ill, Rollin’s decision suggests that the underlying motivation is also an argument for radical self-determination, a right to die on one’s own terms. This subjective dimension, and the need for assistance in carrying that decision out, raise questions about when and how to honor such requests.
Crucially, what is the relationship between medically assisted death, as in the United States and Canada, and voluntary assisted death, as in Switzerland? Rollin’s experience suggests that the differences are more apparent than real.
In Switzerland, physician approval for an assisted death is not needed as long as the motivation of the person providing assistance is altruistic. Still, Pegasos makes a point of noting that medical professionals are part of their team and that “skilled medical professionals” are involved in placing the IV through which the lethal drug is given. Their presence makes them an essential part of the process, if only for quality assurance purposes.
For Pegasos, according to the organization’s website, the person requesting assisted death must be over 18, of sound mind, and have a poor quality of life. The fee is roughly $11,000. This cost, combined with the expense and logistics of travel to Pegasos, may prove obstacles to many.
Most proposals to legalize aid in dying in this country, in contrast, require that a physician certifies the appropriateness of a person’s request. But this requirement leads to questions about how physicians are to judge “appropriateness” and frustration on the part of some who are anxious to move forward. If the purpose is existential, why involve physicians? The stated aims of Pegasos include minimizing red tape and speeding up the process.
The cultural diversity and extreme disparities in wealth in the U.S., not to mention our severe deficiencies in mental health care, make it unlikely that facilities like Pegasos could win legal approval here. For that reason, perhaps, advocacy groups have focused on having physicians serve as gatekeepers.
Rollin’s experience, though, suggests that we may find it difficult to distinguish between assisted death for existential reasons, as in Switzerland, and medically assisted death as currently authorized or proposed in some U.S. states—for which a physician certifies eligibility, and the stated purpose is to relieve physical suffering from progressive incurable illness.
As evidence of this conceptual difficulty, Canada, where a terminal diagnosis has been a requirement for eligibility for medical assistance in dying, is moving toward allowing the practice for existential reasons. In March, Canadians whose only condition is a mental illness will be eligible. Their eligibility must be assessed and confirmed by doctors or nurse practitioners.
The subjectivity in determining whose suffering qualifies for medically assisted death raises this question: how can a clinician be certain? One can say that it is the person’s choice, not the health care professionals’. But, in fact, it is the health care professionals endorsing the request, writing the prescription, and, in Canada, administering the life-ending medications.
Harnessing the power and prestige of the medical profession to this practice injects a deceptive aura of scientific objectivity into a murky human dilemma. Physicians ought to stand by their patients and attend to their comfort. And they are responsible for honestly and sensitively discussing the possibilities and limits to therapeutic medicine.
But nothing in their training prepares physicians to judge whether a person’s life is no longer worth living.
Caring for those who are not getting better is highly stressful for most physicians. I am very aware of the unacknowledged ambiguous, even hostile, feelings doctors may have toward those with unrelieved suffering. Who among us has not had a bad experience with a doctor or worried that a doctor was unduly motivated by self-interest?
Returning to Rollin, we cannot know the full extent of her reasons for ending her life. Clearly, her feelings were powerful, and her action appears to have been carefully planned. But someone’s feelings may suddenly change or be manipulated under conditions of profound existential doubt.
One prominent physician bioethicist expressed sadness that Rollin gave up on living but admiration that she had done “what she thought was right.” His ambivalence is understandable: Rollin thought her decision was right, but does he agree? This hesitancy might lead us to reflect before we make deliberately causing a person’s death, as she wished, an accepted medical service.
Alan B. Astrow, MD, is chief of medical oncology and hematology at New York-Presbyterian Brooklyn Methodist Hospital and professor of clinical medicine at Weill Cornell Medicine.
Thank you for this thoughtful essay. We need to figure out how to remove physicians from this process, except to confirm the diagnosis of whatever terminal or chronic condition may be playing a role in the person’s decision. The idea that physicians have some special insight into what makes life living is a holdover from the days of Marcus Welby. And the idea that one needs a physician to place an IV is just silly.
In Canada you do not need a terminal diagnosis. Since 2021 you only need a disability (widely defined) in order to ‘qualify’ for a medically assisted death. The inherent ableism baked into the current law was identified and protested against by over 300 disability groups and the UN Special Rapporteur when it was passed. The proposed expansion to those whose sole condition is mental illness on March 17th exacerbates the tension for doctors who now are asked to affirm assisted suicide as a ‘rational choice’ for those who are suicidal. There is no consideration of the demoralization, depression and existential distress that may reduce the ability of individuals to make autonomous decisions. Betty Rollins is a case in point. To what extent was she suffering depression and existential distress from the death of her husband? No one seemed to care enough to ask.
As usual, a thoughtful reflection from someone who knows a great deal and has thought a great deal about this subject.
I believe Swiss law now requires a two week waiting period between interview at a VAD clinic and showing up for the
final appointment. So there is that expense as well. That said, “Completion of Life” is a very real thing among the aged. If you’ve been around elderly people in chronic pain or emotional distress, a frequently heard phrase is” I don’t want to be here”. As a hospice volunteer, I have no intention of dying like most of my clients, in pain and suffering. I am also a supporter of Pegasos and Exit International and firmly believe that the elders have a right to end life as they choose.
As someone with a very rare genetic disease that will ultimately result in a very slow, painful and undignified death with no known treatments or cure, I am a fierce advocate for one’s right to self determination. I currently live in Portland, Oregon (US) which was the first state to have a death with dignity law on the books. As progressive as it may sound, the law itself is very limited and fails many of those who suffer as it forces a tough decision on the medical community. How does a medical professional diagnose someone with a complicated medical condition with just 6 months to live? This is crazy to ask this of our medical community so I agree that doctors should be removed from the process. I find this law to simply be an easy answer to a complicated issue that our lawmakers are too lazy or afraid to address. I believe efforts by Exit International to remove the medical professional from the process is the right way to go. Any law in place that would place any limit on our ability to self determination should be based on quality of life, not any arbitrary life expectancy.
As for those who wish to ask questions of those who seek to end their suffering with dignity, I ask that you stop. We owe you no explanation. I see time and time again where people insert themselves into conversations which they do not belong. This does not help anyones mental health situation. The conversations surrounding Death with Dignity are very similar to those regarding abortion. The only persons who should be in the conversation are those of the immediate family, the service provider and maybe, if necessary a medical professional.
I believe at its core, this is a quality of life issue and self determination by those who can make their own choices and express their wishes while they can. We need to have this included in our advanced directive forms that we use in our healthcare systems. I hope that one day we in the US will have representatives that are willing to stand up and give us the rights that we deserve in what is supposed to be a free country.
I have been very vocal to all who need to know that I wish to end my suffering when the time is right. With luck, I hope that time is many years from now but I never know what my body has in store for me from day to day. Even typing this comment is incredibly hard. Hopefully the situation will change by the time I am ready. If not, off to Switzerland I go.
Death is inevitable for everyone, suffering should not be.
Thank you for the thought-provoking and moving responses. I agree with Dena Davis that physicians (and other health care professionals such as nurse practitioners and physician assistants) ought to be removed from the process, though it is not clear how that would work. Nicole Scheidl’s concern that Canada’s medical aid in dying law shows disrespect for the lives of persons who don’t meet some abstract ideal of perfection strikes me as a worthy objection to the law. I believe that physicians ought to be allied with and advocates for those who struggle with illness and disability against powerful cultural forces that attempt to shame the ill and disabled and push them aside. I also agree that many people who seek to end their lives have not had access to proper psychiatric assessment and treatment and needed communal support. I greatly value Fred Knapp’s judgment and much appreciate his kind words. I thank Carolyn B for the added information about Switzerland’s waiting period, which to me, illustrates the profound uncertainty requests for assistance in ending one’s life generate. I have great respect for Ms. B’s experience as a hospice volunteer, experience which I lack. I note that in 40 years as a medical oncologist, no patient has ever asked me to help end his or her life, though a few families have inquired whether I might “speed things along.” Whether we have a right to end life as we choose is a philosophical issue outside my expertise. I’m writing here as a physician: for the reasons I outlined in my essay, I do not think it is part of a physician’s role (or that of nurse practitioners or physician assistants) to deliberately end a person’s life. Regarding Todd Warner’s powerful comments: I admire your courage and honesty and agree that well meaning individuals best not offer you unsolicited opinions and advice. I certainly hope, without good reason for holding that hope, that your prognosis turns out to be less awful than it now appears to be. I agree that there are similarities with decision-making around abortion, but I would add, crucial differences, beyond the scope of a brief reply. I agree with you that a physician’s role is to treat you as best he/she can, and attend to your physical and mental comfort but not deliberately to end your life. I note that Betty Rollin appears, based upon her obituary, to have been mainly sad and tired of living, rather than physically suffering from illness. Distinguishing between existential and physical suffering may prove difficult in practice and also the more common scenario we will face under laws that open access to assisted dying.
As the author cited as appearing ambivalent about Betty Rollin’s chosen method of death, I will accept Dr. Astrow’s challenge and weigh in. The growing use of aid-in-dying is a huge challenge for physicians. Increasingly, we are being asked about the appropriateness of helping suffering patients to die. There are eloquent arguments on both sides. But I agree with Dr. Astrow that the recent expansion of categories for this process is worrisome. We should do everything we can to help individuals who, like Betty Rollin, are “tired of life.” But medicalizing such a state and helping those experiencing it to die should not be in a physician’s black bag.
Thank you Dr. Lerner. I agree that medicalizing the state of weariness with life is bad idea. I would add that in practice, it is likely to prove difficult to distinguish between physical and existential suffering. As a good friend put it, “I am afraid that we are walking blithely into quicksand on this.”
Thank you, Alan, for this insightful piece. Upon looking further into Pegasos, their voluntary assisted death (VAD) service is offered to individuals regardless of their country of origin/citizenship and regardless of their state of health. This is certainly a controversial perspective for those of us in the US, where medically assisted suicide (indicated for those with progressive and incurable disease) is still a morally grey area.
While we ideally would live in a world where we could resolve these ethical dilemmas without the looming consideration of finances, that is not our current reality. To offer context, in the US, around 10% of our healthcare expenditures are attributable to end-of-life care, a number that will typically far exceed the $11,000 price tag of Pegasos’ VAD (plus associated travel costs). While there undoubtedly is a financial barrier to receiving VAD, it is worth considering that its price pales in comparison to medical costs that are typical of the last 12 months of life for those living in the US (these costs, of course, are passed onto your next of kin if your debt exceeds the cumulative total of your assets). For those who want to maximize their financial legacy in the face of death, a service like Pegasos might be appealing for this reason alone.
I’d like to offer an existentialist perspective on this topic, inspired by the ending of this work where you comment on a prominent physician’s sadness in Rollin giving up her life. It is known that our modern medical model focuses on sustaining life, however many practitioners fail to recognize the importance of quality of life over quantity of life — this is a concept that is thoughtfully addressed in Dr. Atul Gawande’s book, Being Mortal. Being able to end your life on your own terms can reinforce feelings of autonomy and independence, a beautiful sentiment with which to close a life. At least in the US, death is typically closely preceded by an aggressive fight against it at all costs, which leaves many individuals frail and hopeless in their last moments rather than empowered.
Speaking as a Nurse Practitioner student, when we as medical professionals cannot come to terms with our inevitable fate as organic beings, we become committed to fighting a losing (and costly) battle. Understanding everyone’s unique goals for their end-of-life care is essential to being able to provide high-quality care; this includes accepting VAD as an option for individuals to consider.