Canadian demographics are such that End of Life planning is being discussed more often, in more circles. For families and individuals, it is one of the most controversial topics of our time.
If there will ever be one answer to this issue, it is far off. There is an abundance of opinion and, certainly among people of religious persuasion, the answer is understandably more straightforward.
This issue is not one that involves “right” and “wrong.” It’s nearly impossible to argue with Sue Rodriguez who, 20 years ago, suffering from ALS (Lou Gherig’s Disease), asked to die. The Supreme Court of Canada denied her request, but that certainly didn’t end the debate.
Two recent stories, one from Canada and the other from the United States, present two dramatic views.
Cuthberson/Rubenfeld v. Rasouli (by his substitute decisions maker) v. Ontario Consent Capacity Board and others
Last month, the Supreme Court of Canada handed down its reasons for judgement. What happened was, two physicians at Toronto’s Sunnybrook Health Centre sought to remove Mr. Hassan Rasouli from what was three years of ventilator support. After brain surgery in 2010, Mr. Rasouli lapsed into a permanent vegetative state, and in 2012 his diagnosis was upgraded to a “minimally conscious state.” His spouse and substitute decision maker, an Iranian physician, Dr. Salasel, declined to consent, and obtained a Court injunction to prevent the removal of ventilator support.
The two physicians’ appeal was unsuccessful. They had tried to convince the Court that physicians can unilaterally withdraw life support if it provides no medical benefit to an incapable patient. They also sought to prove that the Consent and Capacity Board has no jurisdiction to decide the issue (under Ontario’s Health Care Consent Act).
The Chief Justice, Beverley McLachlin, wrote for the majority. She said the legislation requires that the patient consent to “treatment,” which includes the withdrawal of life support. Thus, the physicians need the Consent and Capacity Board’s consent to remove the life support, when the patient is unable to consent.
I should note that this case’s application is somewhat narrow, because the Ontario Health Care Consent Act legislation is not the same as legislation in this area in other provinces. Therefore, we will see more of these kinds of cases in future.
Ms. Butler’s daughter, Katy, wrote about her mother’s death last September in the Wall Street Journal. Ms. Butler died in a Connecticut hospital, partly due to choices she had made some years earlier.
Born in South Africa, she met her husband in 1946, married in 1947 and shortly after moved to the U.S., raised three children (all of whom moved to California) and lived on the East Coast. She was a photographer, mainly at Wesleyan University in Connecticut.
In her 40s, she contracted breast cancer, took radical medical treatment, and recovered. She was the caregiver for her husband when he suffered a stroke. A pacemaker was inserted, which (Katy wrote) “allowed his heart to outlive his brain.” He contracted dementia, and Ms. Butler felt her husband lived too long without any quality of life. She did not want that for herself.
Apparently, under the U.S. Medicare system, in the last year of life of the typical American:
a) about one-third have surgery;
b) medical treatment costs one-quarter of Medicare’s annual $550-billion budget;
c) one-third to one-half of patients spend (expensive) time in the ICU.
The writer added that advanced life-saving technologies have erased the line between saving a life and prolonging a death. Dying, Katy says, has become “technological rather than spiritual.” Medical facilities leave us no room to think of death.
In 2009, Ms. Butler found she had trouble walking around the Wesleyan campus. She had two leaky heart valves. She declined the surgery that doctors recommended. Ms. Butler’s cardiologists were surprised, and asked her to reconsider. She said she “didn’t want to live until she was 90” (she was then 84).
Ms. Butler’s daughter then stopped pressuring her mother to live forever, and worked with her doctors to do less rather than more. When Ms. Butler died, it was a painful death because of heart pain. But it was on her terms: “painful, messy and imperfect, but that is the uncontrollable nature of dying.” She died, however, without a “technological flail.”
I suggest that we will, as a society, get to the “Valerie Butler” philosophy eventually, driven by cost. We are a democracy, with relatively decent freedom of choice. We have created a spectacular array of medical technology that acts to prolong life, per the Hippocratic Oath.
As I have said on many occasions, we now are living longer than ever before. Now, that means in part that we are more prone to diseases such as Dementia and Alzheimer’s. But of course that may change with more research, such that we will live longer and enjoy (potentially) a longer, healthier life.
At present, both of the above stories are fascinating, and moving. The challenge for us is whether we can reach a stage where a person can make a life decision that is respected, honoured, and followed.
This column ran in the Richmond News on November 29, 2013.