Friday, February 13, 2015

It's a Matter of Choice: Considering Physician-Assisted Death ...

Ultimately, in our view, when beneficial medical options for cure and for palliative care diminish, the patient, after being properly informed, increasingly becomes the final arbiter in accepting or rejecting these options.

Gerrit Kimsma, MD and Evert van Leeuwen, PhD (2004)

Hello, Everyone,

I'm late with this post after waiting for and then pondering how to respond to the Supreme Court's decision to allow physician-assisted death in Canada. In the end, I think all I can do is to tell my husband's story and to highlight a few important concerns.

On September 30, 2004, my husband of almost twenty years died three weeks after stopping all treatment but palliative care so that his viral cardiomyopathy could run its course. It had been 7 years since his diagnosis and he'd spent the last 3 years confined to bed. He was not clinically depressed and, despite a considerable amount of grief, had been a wonderful role model for how to live life fully and well with ever diminishing energy and abilities. He taught us how to live well and, when the time came, how to die well.

When he told me of his decision to stop treatment, he put it this way. "I feel like a weary traveller on a railway platform waiting for the train. The only thing that makes me sad is knowing that you won't be coming with me." He was exhausted, suffering and ready to die. Any exertion, even listening to music with a quick tempo, caused him chest pain;  every few days he was subjected to the uncontrollable and excruciating pain of catheter changes with a hypersensitive bladder; and the loss of control, pain medication and diminishing oxygen to his brain triggered frequent posttraumatic stress flashbacks to his childhood in wartime England. He had had enough and, although I didn't ever want to lose him, I supported his choice so his suffering could end.

Would he have chosen a physician-assisted death if it had been available at the time? I honestly don't know. But, aware of his lifelong desire to have and carefully consider options in any situation, I think he would have wanted to consider the possibility. (And I'm quite sure that I will want to consider the possibility for myself when the time comes.)

Several things concern me as we wade into the early days of implementing this decision. Three of the most important follow. The first is that we need to see physician-assisted death as part of the continuum of care rather than as a separate choice over and against disability-support and palliative care. Such dualistic thinking will only cause more grief and suffering to patients and families. It is not a matter of either-or but of both-and. Yes, we must improve the quality of and access to sufficient and wide-ranging disability, palliative and hospice care but that doesn't mean that we cannot also provide assisted-death to the few whose suffering cannot be eased and who request that final option. As Dutch physician, Kimsma and medical ethicist, van Leeuen, put it in Physician-Assisted Dying: The Case for Palliative Care and Patient Choice:
(Placing euthanasia in opposition) to palliative care in the way critics have suggested fundamentally disregards the wishes of the patient in the face of death.
Surely that is not our purpose in providing end-of-life care?

A second concern is that we should make our choices regarding the implementation of this decision based on research and compassion rather than on our fears. For example, we know that despite some fears that people will be "put to death" in terrible circumstances, in-depth interviews with patients and families in other jurisdictions point to assisted-death as a moving and positive experience with less traumatic grief experienced after the death than that found in counterparts whose loved ones had died a "natural death". Other studies tell us that physicians can have a very difficult time, emotionally and in relationship with their families, in the days before and after assisting with a death, calling into question the fear that they will become inured to the experience and begin to make such decisions too easily. There are many cases in which our fears regarding physician-assisted death can be allayed by the facts. So, let us be sure to examine the evidence before allowing fear to determine our actions.

My third concern is based on the physician studies noted above. If we are to begin offering patients physician-assisted deaths, it is vital that we first have conversations about what comprises adequate support for the health-care professionals involved. It will be important to put our knowledge of compassion fatigue and burnout to use in creating the best possible support for these caring people.

I believe that if we are open-minded, reflective, compassionate and wise, physician-assisted death can become another important tool for providing comprehensive and compassionate end-of-life care.