I met Jane* when she was 71, soon after she was diagnosed with brain cancer. As a psychiatrist, I was helping her deal with the stresses and losses of her declining physical abilities and the knowledge that this particular kind of cancer could only be temporarily controlled and would ultimately be a terminal illness.
At that time, the idea of medical assistance in dying was being considered by the Supreme Court. Jane made it clear to me early in her illness that she supported this idea in principle. To be able to “die with dignity,” as Jane put it, fit with the strongly independent way she had lived her life. She was adamant that under certain conditions of severely limited physical ability, she would no longer consider her life worth living. “I really don’t see the point of suffering pain, indignity and loss of my autonomy, with only a few more weeks or months to live,” she said. (Everyone is different: Many people with severe limitations of physical ability, with and without terminal illness, certainly do consider their lives to be very meaningful, as do those who know them and love them.)
Shortly after Parliament passed legislation legalizing MAID in June 2016, Jane was told by her oncologists that her illness had entered its terminal phase. Nothing more could be done to slow its course. According to her oncologists’ estimates, she had a few months left at most. This was when Jane asked me how to apply for MAID. We discussed the process in detail, and in particular the legal requirement that the patient be fully mentally competent up to the last moment. Not long after our conversation, Jane submitted a written application for MAID, and I conducted a formal assessment of her eligibility.
One of the most challenging things in assessing competence is trying to determine whether and to what degree the person’s decision is distorted by depression. It is not abnormal to feel depressed in the face of great suffering and a hopeless prognosis. Assessors must consider carefully whether the depression is biasing the patient to the point that they’re unable to think flexibly about their options and the potential scenarios—in a sense significantly impairing the voluntariness of their decision.
Jane had been suffering from depression, as well as mild cognitive deficits as a result of the brain tumour, throughout the two years of her illness. Her depression was mild to moderate in severity, and while it was of course related to her prognosis, it was characterized more by motivational difficulty and an inability to feel pleasure, with a quality very suggestive of direct neurological effects of the tumour. She was still able to perform activities of daily living and to maintain her social routines, but she had lost her drive and joie de vivre, which she found hugely frustrating and demoralizing. She did her best to implement behavioural activation strategies—getting out for daily walks, reading the newspaper, forcing herself to see friends once or twice a week—but to little avail. Antidepressant and stimulant medication trials had no impact.
Though deeply discouraged by her lost vitality and pessimistic about the prospects of regaining it, Jane consistently displayed excellent insight and appropriate judgment. She was able to coherently and rationally imagine and discuss different scenarios that would in all likelihood ensue if she were to let her illness run its course. She was able to argue convincingly why those scenarios would diminish her quality of life in ways that were unacceptable to her and contrary to her long-held values of fierce independence.
Every MAID assessment is challenging for me. I worry about making the wrong decision by taking at face value the patient’s assertion that living out what remains of their life is futile. I had a very personal experience of thinking that a loved one was competent when in fact they were not: Years ago, my 92-year-old grandmother was in a state of recurrent poor health and she requested not to be taken back to the emergency room. She begged to just be allowed to die at home. She assured us that she felt she’d had a good life, but that at this stage she had just “had enough.” While we were ready to simply make her comfortable at home, her family doctor felt compelled to call an ambulance. It turned out that she was dehydrated. After rehydration and a few days in hospital, my grandmother had only the haziest recall of that almost-fateful conversation. She lived another four high-quality years, which included seeing my children grow old enough to form wonderful lasting memories of her.
End-of-life decisions, especially MAID, profoundly affect everyone close to the patient. While the final decision rests with the patient, I consider it extremely important that their immediate family members are comfortable with a MAID decision. In Jane’s case, they were, and they understood and supported her right to make this choice for herself.
The family is also often indispensable in the assessment itself, as they can attest to whether the patient is expressing a wish that is consistent with her values or whether the MAID request is highly unexpected and out of character. Every individual approaches end-of-life decisions differently. I have known people who continue to find purpose and meaning in their dying days, sometimes profoundly. They might have the opportunity to say deeply meaningful things to loved ones—things they might otherwise never have said, and to feel valued by others caring for them. The carers often feel valued too.
Depression does bias a person’s outlook, but bias is not the same as mental incompetence. Doctors have to balance the need to protect patients in vulnerable mental states from exercising poor judgment against the need to respect their autonomy.
Ultimately, the law upholds the patient’s right to choose for themselves, as long as they are mentally competent. I deemed Jane mentally competent to make this decision. A second assessment was conducted by another physician, as is required by the MAID legislation, and the two assessments were in agreement.
Jane chose the date she wanted to have MAID administered. She organized a small farewell party in the palliative care unit where she was being cared for. I dropped in for a while, at Jane’s invitation, and witnessed her “holding court,” joking and reminiscing over food and wine.
I was also present at Jane’s MAID procedure, at her request. While we waited for the nurse to set up the room and connect the intravenous line, we spoke about Jane’s favourite topic—politics—for the sake of distraction. She said she regretted that she would not be around to see how the present U.S. presidential term turned out.
Family and friends gathered around to say their goodbyes. Jane’s classical music choices started to play. There were hugs, kisses, loving words and mutual praise. Then the final goodbyes. When Jane said she was ready, the attending physician began the first infusion (the sleep-inducing sedative). Jane, who always had a wicked sense of humour, said, “I don’t feel anything. I think you’re going to need more than that to kill me!” The next moment she was asleep.
A series of further infusions followed, inducing deep anaesthesia. The last of the infusions stopped Jane’s breathing and her heart. The colour slowly drained from her face. The whole process took just a few minutes. Her family and friends tearfully hugged each other and then spent some private time in the room with her lifeless body.
*The patient’s details, including her name, have been altered to protect her identity.
A version of this article first appeared on Sunnybrook’s Health Matters website.