The Obstacle Course to the Right to Die on Your Own Terms
Jean Marmoreo | August 13th, 2015
There was a time when deciding to die in your own time on your own terms was either a crime against man or a sin against God.
That time appeared to end on February 6 when Canada’s Supreme Court voted 9-0 to let doctors help patients end their own lives. In fact, the Supreme Court said that not allowing this was cruel and unusual punishment under the Charter of Rights and Freedoms. The Court’s unanimous decision seemed to have the wind of public opinion at its back: 84% of Canadians support assisted dying, as do 85% of members of the disabled community, 83% of Roman Catholics, and 77% of Conservative voters.
The Court also told the Federal Government to have assisted dying up and running within a year of its decision. Ottawa responded by establishing an expert panel to ‘engage the Canadian public’ about our wishes and to set out the conditions for assisted dying in place.
I understand that the Federal Government and the Supreme Court are barely hissing at each other these days. But what makes me scream “Not again!” is that my right to finally determine a dignified end to my life is again littered with roadblocks, potholes and muggers.
So don’t think that just because the Supreme Court gave you and your doctor the right to ‘have the conversation’ that you can actually do that. We’re in for a wearying, dense, uphill battle still.
The panel of three is weighted with two academic heavyweights who actually testified as government witnesses in the Supreme Court case. One of these panelists is on record suggesting that it would be a good idea if, every time a patient made the decision to end their lives, that his or her doctors would have to go before a judge to get approval first. Think how long that could take. Think who’s making medical decisions now. Think who’s back in power again: an arm of government.
The Canadian Medical Association began its dialogue with the medical community this past spring. One thing is clear from these conversations: end-of-life care is going to become just another part of how we doctors care for our patients throughout their lives.
For over 40 years I have had one of the most privileged careers in the world: looking after my patients ‘from cradle to Heaven.’
Here is what I know about my patients. They want life and they want to live. They will tolerate unspeakable hardship, chronic pain, and awful discomfort to sustain their lives. They will hold on to life even in the absence of a hope for cure that we view as essential for being able to shoulder on. They will do it even if they know there is likely to be no way out. They want the experimental drugs and off label prescriptions that offer slim pickings to stave off the inevitable. We provide hospice, volunteers, support and respite care, all of which may serve to drag out the process of dying, yet they endure. The vast majority of my patients will grasp life on any terms.
There are a few though, who have made it clear that they value the quality, not quantity of their years lived. These are my patients with advanced care directives that sit in their file and in their lawyer’s office. They have completed the online workbook; they have designated their powers of attorney with crisp instructions.
Only one in five Canadians has done this, and every chance I get I encourage my patients to do so. It will save untold grief at the end – and before. The majority of Canadians have given how they want to die some thought, and half of us have discussed our plans for our death with other family members, especially before major surgery or the onset of a critical illness.
As their doctor, I’m happy to open the discussion at any point, and especially as my patient declines in health and capacity.
So, all of the above sounds very high-minded and nice – especially the part about ‘advanced care directives’ when serious illness or catastrophic illness comes into play. But the reality is, when most of us are engaged in ‘full frontal’ living, these kinds of discussions can border on the macabre.
But here’s how you might want to begin:
Dr. Atul Gawande writing in his pioneering book about death and dying, Being Mortal, proposes his five questions that we should all try to answer when we’re facing critical or terminal illness – or before we have to face them, when are our minds are clear and our bodies well. Most will only have relevance when and if we become that ill. But the exercise is a useful one to contemplate.
1. What do you understand about your illness?
2. What if your condition worsens?
3. What matters to you most?
4. What are you prepared to put up with?
5. And lastly, what does a good day look like?
The questions matter whether we are addressing palliative care, refusal of care, or a request to have our doctor help us hasten our death.
It is a part of the listening and understanding process that doctors must be able to justify and account for their participation in any momentous and final act that ends a life rather than sustains it.
The notion that offering palliative care can offset suffering, is fatuous for many patients.
Our health care system is actually very good at providing such care for our terminal cancer patients. Hospitals sprout palliative units like mushrooms, though they function independently from each other and beyond their boundaries, many patients fall through the cracks. A recent poll suggested that palliative care is effectively limited to 31 per cent of Canadians. Even beyond those limitations, there exists a swell of patients with chronic heart and lung conditions, or who strain with intractable pain or profound depression and who clearly lack any meaningful palliative care. For them there’s no crack to fall through because it’s a chasm.
But as a family doctor, I also want to know some answers and not just ask some questions: Has your family been engaged in this discussion and do they support this direction you want to take? Or do they even know about it? What are the faith implications and will they touch the family? Is there a Will prepared? And many many more …
The bottom line is that doctors have to see evidence that the decision to end your life has been well thought out and planned and stated clearly. So there has to be time for reflection, dialogue and confirmation of the goals. And absolutely, the opinion and assessment of another physician will be required. As with family members, this is a decision that has to be shared not done in isolation or secrecy.
Such is our commitment to the whole life of our patients that family doctors have never shied away from this area of care, but we have been helpless and ineffectual in the past when requests or pleas for assisted death have come.
The process of dying has much to teach us all about living, I have no such conviction about suffering. I also have a physician’s sense of our limitations in easing such suffering at the end of life.
The choice about being able to end your life in the face of torturous pain or immense suffering as a basic human right, has now been turned from an illegal act into the law of the land by the Supreme Court of Canada.
Yes, politics will get in the way, and already is.
But we shouldn’t let the momentousness of the Court’s decision to move all 33 million of us to a more reasoned, frank and sensitive dialogue about the nature and quality of how life is lived, celebrated and honoured, even in dying.