Is Medical Assistance in Dying Compassionate Care?
A Conversation With Madeline Li, MD, PhD
Suicidal ideation while receiving end-of-life cancer care is not unusual but can often be reversed by palliative and psychosocial oncology interventions. That said, there are patients who, even after intensive interventions, request medical assistance in dying. Physician-assisted death has been a hotly debated subject in the United States, going back to 1828, when the first U.S. statute was enacted to outlaw the practice. However, in 2008, Washington became the first U.S. state to legalize physician-assisted suicide, and since then, five other states have passed similar laws. On June 17, 2016, a bill to legalize and regulate assisted dying passed in Canada’s Parliament.
To shed light on the challenge of end-of-life care in the cancer setting, The ASCO Post spoke with Madeline Li, MD, PhD, Associate Professor of Psychiatry at the University of Toronto; Psychosocial Oncology Clinical Lead at Princess Margaret Cancer Centre, Toronto; and lead author on a published exploration of a hospital-based program for medical assistance in dying.1
Treating distress begins with timely and accurate symptom assessment. How do you approach this at Princess Margaret Cancer Centre?
Distress screening is now mandated as a standard of care by multiple regulatory bodies. Cancer Care Ontario requires symptom screening using the Edmonton Symptom Assessment System–Revised and patient-reported Eastern Cooperative Oncology Group functional status.
At Princess Margaret, my colleagues and I created a more comprehensive emotional distress assessment program called the Distress Assessment and Response Tool, or DART, which includes specific screening for emotional distress. Our aim was to increase the detection of undetected distress in order to enhance clinical care. But I was also interested in establishing a distress-screening tool to identify patients for entry into psychosocial research and to establish a database from that research.
This is a very challenging clinical issue, but in the end, I believe offering medical assistance in dying is the most compassionate way to treat some of our dying cancer patients.— Madeline Li, MD, PhD
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The Distress Assessment and Response Tool is actually more than a tool; it is a program with three components, including the distress tool itself, but also an implementation package that helps facilitate the necessary changes in clinical practice that need to occur in distress screening. And it is a clinician education package, which trains the team in response pathways needed to deal with distress.
As far as the tool itself, we survey and screen electronically using tablets that receptionists give to patients in the waiting area prior to their appointment. A report is generated from the patient survey. The oncology nurse is the first member of the care team to review the survey before it is shared with the rest of the oncology team. The results outline how to implement best practices in treating distress.
We started out with this program in one clinic, and now it is used across all clinics in the hospital. We used a programmatic management approach and conducted one of the largest demonstration projects in the world of a distress-screening program in a single-institution cancer center. After conducting multiple studies of the impact of screening, our experience with the Distress Assessment and Response Tool demonstrates that a screening program for distress can be successfully implemented.
Your clinical research centers on the relatively new field of psychoneuroimmunology. Please briefly describe your work in this area.
I have both MD and PhD degrees, so as a medical doctor, I practice clinical psychiatry within the cancer population. My PhD was originally in molecular genetics and molecular biology. I struggled to marry psychiatry and molecular research until I discovered the field of psychoneuroimmunology, which is a multidisciplinary approach to studying the connection between the mind and the body.
It is a relatively new discipline, and there is a psychoneuroimmunology research society for those who are interested in the interactions between the nervous system and the immune system and the relationship between behavior and health. It is a relatively small group, but there is an annual research meeting, and there is a journal called Brain, Behavior, and Immunity, which publishes peer-reviewed research in the field.
I work in the palliative care clinic helping patients with end-of-life distress, but my own research in psychoneuroimmunology is examining the biologic etiology of psychological distress in cancer patients. I look at immune system function in cancer patients suffering from depression (which often drives suicidal thoughts) in an effort to distinguish those depression-driven thoughts from a rational desire to die. And that is the connection with the medical assistance in dying program.
A Controversial Topic
Please give readers an overview of medical assistance in dying.
Assisted suicide is a very controversial topic, and there has been much debate about the medical assistance in dying program among health-care disciplines that deal with end-of-life care. My department of supportive care, including psychosocial and palliative care services, has a mandate to treat and relieve suffering during a patient’s end-of-life experience.
We know from the literature that the bulk of requests for medical assistance in dying are made on the basis of extreme psychological suffering rather than physical suffering. So it made sense for our department to take the lead in developing the program.
Our supportive care department at the Princess Margaret Cancer Centre has developed medical assistance in dying guidelines for the whole University Health Network—four hospitals in sum. I’m the clinical lead of the program; I developed the framework and initiated its implementation.
A Learning Experience
Why did you and your colleagues start the program?
We took it on largely because it has been newly established as a right in Canada, so the institution has an obligation to respond to patients requesting it. It has so far been an extraordinary learning experience, full of surprises. For instance, requests for the services are not made by patients in unbearable pain or those with depression-driven suicidal ideation or vulnerable people under particular socioeconomic pressures. Instead, there’s a prototype—they are successful, high-functioning people who are used to being in control and are often not that open to accepting psychological intervention.
I came into medical assistance in dying with a certain degree of ambivalence, because treating psychologically distressed cancer patients at the end of life is my vocation. A request for medical assistance in dying feels like a failure of my clinical care. The patient is saying he or she doesn’t want my help, so it is professionally invalidating. But I have learned that the patient who opts for medical assistance in dying and doesn’t want our psychosocial services probably wouldn’t benefit from them anyway.
I’ve also learned that for some patients, medical assistance in dying is actually the only way to help them with their end-of-life distress. It is the right treatment for them, and I’ve come around to fully believing it is a clinical service we should provide for select patients. Having the option of assisted dying is powerfully therapeutic, and most patients who receive approval for it have a sense of relief.
Please discuss your experiences with the caregiver’s role in medical assistance in dying.
The media tend to portray this in black-and-white terms, as those against the decision and those supportive of it. But the truth is it’s a very gray area. Most families are initially reluctant but always respectful of their loved one’s decision. Nevertheless, it’s hard on families.
First, the death itself—losing a loved one forever—is devastating. And when a patient makes a request for medical assistance in dying, in effect it can be heard as saying “nothing in my life is worth living for, including my spouse and family.” Of course, it is more complicated than that, but most patients who request this assistance may do so because they’ve lost control over many things that gave their life its true meaning.
Change of Heart
Do some patients have a change of heart?
Yes, I’ve had three such cases. I’ve learned that some people who request medical assistance in dying are actually afraid of dying. It’s kind of paradoxical. For instance, there are those who’ve received a dire prognosis and are actually afraid of their natural death; somehow they feel that medical assistance in dying is a way of escaping the process of natural death without realizing how difficult it is to put your arm out for a lethal injection.
That’s one reason why there’s a 10-day reflection period before the procedure. Immediately before providing medical assistance in dying, the physician or nurse practitioner must give the individual an opportunity to withdraw their request and ensure that the person gives express consent to receive the service. A last-minute decision not to go through with it can be distressing for the patient and family.
This is a very challenging clinical issue, but in the end, I believe offering medical assistance in dying is the most compassionate way to treat some of our dying cancer patients.
High-quality palliative care and psychosocial interventions are key to relieving distress among patients with cancer. Are clinicians armed with the necessary tools?
Yes, we currently have very effective palliative care interventions. If initiated in a timely fashion, they can greatly reduce emotional and physical suffering in advanced cancer patients. However, palliative care and assisted dying usually aren’t mutually exclusive. To date, every patient receiving assisted dying at Princess Margaret has already been in receipt of high-quality palliative care.
We also have a growing body of research around psychological interventions. Here at Princess Margaret, Gary Rodin, MD, and Sarah Hales, MD, have developed an intervention called Managing Cancer and Living Meaningfully (CALM), which focuses on four content domains that address the profound issues faced by those with metastatic cancer. There are many end-of-life, brief psychological therapies. I have no evidence to back this up, but my empirical speculation is that end-of-life therapies based on review of dignity and meaning might strengthen a patient’s desire for assisted dying rather than reduce it. ■
DISCLOSURE: Dr. Li reported no conflicts of interest.
1. Li M, Watt S, Escaf M, et al: Medical assistance in dying: Implementing a hospital-based program in Canada. N Engl J Med 376:2082-2088, 2017.