When his mother, Rosemary, was dying from cancer, he witnessed a different kind of suffering—intractable and without purpose. “It was cruel. Nobody should have to suffer like that. She should have had a choice to die on her own terms” i
For my patient, whom I will refer to as Jane,ii it was different. Jane had requested and been granted Medical Assistance in Dying (MAID). At a time of her choosing, with a select group of family and friends gathered around the bedside to say goodbye and support her, and with her favourite music playing in the background, a physician infused a powerful sedative into the intravenous line in Jane’s arm. Within seconds, she fell asleep. A series of further infusions followed, inducing deep anaesthesia. The last of the infusions stopped her breathing and her heart. The colour slowly drained from Jane’s 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.
I had met Jane three years earlier at age 71, soon after she was first diagnosed with an incurable 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. Jane had made it clear to me early in her illness that she supported in principle the idea of medical assistance in dying. The issue was still being debated in Canada and was being considered at that time by the Supreme Court. The idea of being able to “die with dignity,” as Jane put it, fit with the strongly independent way she had lived her life. It was important to her to feel that she have as much control over her life as reasonably possible. Quality of life was most important to her, and she was adamant that under certain conditions of severely limited physical ability, she would no longer consider her life worth livingiii. “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 anyway.”
It was shortly after Parliament had passed legislation legalizing MAID in Canada in June 2016 that 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. It was then that Jane asked me how she could proceed to apply for MAID. We discussed the process in detail, in particular, the legal requirement that the patient be fully mentally competent up to the last moment in order to be deemed eligible to request MAID (NOTE: This requirement has since been removed in specific circumstances).
We also discussed the alternative options available to her, which included palliative care and palliative sedationiv. Palliative care can include a wide range of measures designed to maximize comfort and minimize pain or distress, all the way to the end of life. Palliative care is frequently very effective, but of course cannot be guaranteed of achieving its goals.
Jane had been suffering some depression as well as mild cognitive deficits since her initial diagnosis as a result of the brain tumour, but she had consistently displayed excellent insight and appropriate judgement. After Jane formally submitted a written application for MAID, I conducted a formal assessment of her eligibility and of her mental competencev.
One of the tricky things in assessing competence to choose MAID is trying to determine if or to what degree the person’s decision is distorted by depression. It is not abnormal to feel depressed and a sense of futility in the face of great suffering and a hopeless prognosis. But I have also 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 that they might never otherwise have said, and to feel valued by others caring for them (the carers often feel valued too, in their important role).
Ultimately the patient has the right to choose, and a right to autonomy, as long as they retain mental competence. 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 from exercising poor judgement in vulnerable mental states against the need to respect the patient’s autonomy.
I deemed Jane mentally competent to make this decision.
It was relevant to note as well that Jane’s request for MAID was consistent with her long-held values.
While the final decision was Jane’s to make, it was also extremely important that her immediate family should be comfortable with her decision, and supportive of her right to make this choice, which they were.
A second assessment was conducted by another physician, as is required by the MAID legislation. The two assessments were in agreement.
Jane chose the date she would like to have MAID administered, a date that must follow a ten-day waiting period. A few days before the designated date, she organized a small “farewell party,” with the assistance of friends. It was held in the palliative care unit where she was being cared for at that stage. I dropped into the party for a while, at Jane’s invitation, where I witnessed her “holding court,” joking and reminiscing over food and wine.
I was 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 round 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, still retaining her trademark 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.
i The Globe and Mail. “High-Altitude Climber Advocating for the Choice to Die.” (date posted Oct. 13 2014).
ii The patient’s details have been altered to protect her anonymity. Some of the details are a composite of several patients whose MAID I have been involved with.
iii I consider it very important to note here that I have met many people with severe limitations of physical ability, with and without terminal illness, who just as adamantly consider their lives to be very meaningful, as do those who know them and love them.
iv Palliative sedation (also known as terminal sedation) is a significant step further than ordinary palliative care. It involves continuous medically-induced heavy sedation such that the patient is effectively asleep or unconscious for a period of what might be days or weeks until death occurs naturally (death would be hastened, though still natural, if the patient or their next of kin requested that no intravenous fluids be administered in this drug-induced state of unconsciousness). Palliative sedation is not subject to the same stringent rules as MAID – it does not require that the patient be capable of making the request herself. Her next of kin can make the decision on her behalf, taking into account her prior expressed preferences and values, if she is already incapacitated.