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.
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Where do we stand legally in terms of advanced planning for MAID at a time when we may be no longer able to say “now is the time”? I wonder, too, do insurance companies recognize MAID as a form of death suitable for policy payout?
Medical assistance in dying (MAiD)
should be modified to allow PROXIES
to make the final medical decisions
especially for patients whose mental powers
become questionable just before death.
If I am dying from brain cancer,
there is no telling when I might lose
the intellectual capacities to choose death.
Read more discussion of allowing PROXIES
to make the life-ending decisions
when the patient can no longer choose:
PROXY-POWER WILL BE CENTRAL
FOR ADVANCE CONSENT FOR DEATH
Canada’s new right-to-die law does not allow
a future patient to choose death
after the patient has lost mental capacity.
The doctor might prepare the lethal dose,
but the PATIENT must be able to cooperate
up to and including the final moments of life.
Sometimes patients have lost
the right to medical assistance in dying (MAiD)
just because they had to be deeply drugged
to prevent the suffering caused by their terminal illness!
But the terminal patient is NOT required
to remain conscious and capable
in order to receive most other forms of medical care:
(1) When the patient is unconscious or semi-conscious,
(2) when the patient has Alzheimer’s disease,
(3) when the patient is an infant or child or never developed
enough mental capacity to consent to medical procedures,
the doctors are NOT prohibited from recommending
the following life-ending decisions.
And PROXIES authorize taking the final steps that bring death.
1. All forms of COMFORT CARE can be provided to dying patients.
This includes making adjustments in the levels of drugs
used to control the various symptoms of dying.
The doctor can increase the pain-meds
even if this might shorten the process of dying.
When the patient cannot approve any such changes,
the PROXIES authorize what the doctor recommends.
2. If the patient’s suffering cannot be adequately controlled
by increasing the pain-medication,
then the doctor might recommend TERMINAL SEDATION.
Drugs will be given to the dying patient
that will keep this person PERMANENTLY UNCONSCIOUS
for whatever remains of the process of dying.
Usually the patient is not fully able to consent
when terminal sedation becomes the best treatment.
But PROXIES are permitted to consent for their patient.
3. Sometimes the patient has been maintained by life-supports.
Oxygen or nutrition-and-hydration might be provided by tubes.
When medical treatments and life-supports
are no longer effective,
they can be terminated upon recommendation of the doctor
and the informed consent of the PROXIES.
Once again, the patient is frequently NOT ABLE
to participate meaningfully in this life-ending decision
to terminate all forms of life-support.
4. An Alzheimer’s patient might be kept alive by a feeding-tube.
When would this patient be expected to give informed consent
for ending this final form of life-support?
Normally the PROXIES would make the withdrawal decision.
The Alzheimer’s patient does not lose the right-to-die
merely because he or she can no longer consent
to any life-ending decision.
Because the normal practices of terminal medical care
already include these four kinds of proxy-decisions,
perhaps the IMPLICIT PRINCIPLES for empowering proxies
could be applied to medical assistance in dying (MAiD).
However, this probably cannot be achieved
by amending the national criminal code of Canada,
where the MAiD exception now resides.
Rather, the provinces and territories of Canada
(which are responsible for all health-care regulations)
might have to give EXPLICIT AUTHORIZATION
to proxies to make life-ending decisions for their patients.
With the written advance consent of their patient,
proxies should be empowered to decide
EXACTLY WHEN to approve the actions
(like the four medical methods described above)
that will bring their patient’s life to a peaceful end.
Thank you for this. As someone that is currently considering applying for MAID, reading the personal stories like this are the most meaningful.
Amber, I truly wish you a caring, compassionate, empowering experience.
I do not think that for certain anyone can judge a person’s competence. Illness colors your world and so does depression. There are differences in depression that comes from physical illness. People that have a severe flu might look, sound and act depressed.
To judge a person incompetent could do great harm and subject them to a miserable death that they did not want. So in the face of physical illness, and illnesses that the people doing the assessments have never lived with, is wrong and takes their autonomy away completely.
If you erred and they were in fact incompetent, no one will ever know, but at the least, you as a human to another would not take their decision away from them.
No matter how educated, practiced or intuitive, I’m sorry but we can all be dead wrong about a person’s speech patters, dress, behavior or looks.
I would think one would have to be careful not to judge the very terminal competent as opposed to non linear diseases incompetent.
And also the ongoing problem of colleague opinions.
I’m glad to hear you respected her wish, but I do have a problem with one human granting another a wish or desire. A phd does not give me the expertise or right to make judgments that could hurt a lot of people. When someone requests MAID, and is denied by doctors, it would definitely cause an abandoned feeling I would think.
And thus also for the family.
And even that deep sadness would not be abnormal.
I think we should treat grown up people as grown ups, the way you would want to be treated if in the same position.
To say yay to one and nay to another, and it really does not matter on an experts judgment. If experts can be wrong as in the case of dehydration, so I would surmise they can be wrong if they judge incompetence.
We know enough about even the ‘mental illnesses’ that it does not take away competence. It is just a matter of judgment passed onto another equal.
Sam, I’m wondering if we had a legal letter signed and witnessed by our family that we were mentally competent at time of signing and then listed our desire for MAID whether it would improve our chances of getting it.
I can guarantee that the last words are not the law, but interpretations of law, hence the unequal distribution or applications. We do not hear of or from the many voices silenced. It is more a sad state of affairs than a success and as far as a family letter……don’t forget, we need a PHD in order to be able to determine rationality or competency of a person. We as a collective of non PHD holders, do not have the intelligence or qualifications to judge another person as competent, even though we do this as part of innate knowledge, intuition on any given interaction, including our abilities to judge a medical persons competence, which by the way is not limited to their scientific knowledge.
Thank you Dr. Lewis, for making the distinction between exogenous depression, such as Jane’s, and mental incompetence. Of course my late husband was depressed that he was going to die too soon from his brain tumour — who would NOT be? But he did not have a mental illness that could be “treated” and his wish for MAID was borne of a conviction that he had lived a fantastic life and wanted to die a good death. The law didn’t change in time to give him that, but I’m glad it was there for Jane and I’m glad you were there to assist her.