This week I may be having very different conversations with my patients than I did last week.
My 40 years of caring for families has taught me that people want to live, not die.
Many of my patients undergo awful hardships and endure brutal suffering in order to live. They will not ask to be released from their pain by being released from life. They will soldier on.
The Supreme Court of Canada ruled on Friday that patients suffering greatly from terminal diseases have a right to physician-assisted death. The ‘unendurable pain’ mentioned in the Supreme Court’s ruling is generally brought on by cancer. Much of our palliative care focuses on relieving cancer pain. Often that pain grows after many rounds of chemotherapy, radiation and surgery. It sharpens when the oncologist says: “We have nothing else to offer you.”
It’s then that a family physician engages in a different kind of discussion, about diminished expectations and reduced quality of life, and, of course, about the prospect of being in constant pain. While some Canadians are blessed in having palliative care units attached to regional cancer treatment centres, this is generally a big-city benefit. The reality is, only 16 per cent of Canadians have access to these services, according to Dr. Chris Simpson, the president of the Canadian Medical Association. In other words, we lag in providing adequate palliative services, let alone end-of-life choices for our patients.
This is all the more reason to sit down first with your family and then with your doctor and talk about your own end-of-life decisions – preferably this week while you’re still mentally competent and not suffering intolerably and permanently.
Dying well on your own terms is much easier to discuss now than when you’re struggling to breathe with congestive heat failure or chronic lung disease.
No conversation could relieve you and your loved ones of so much pain as this one.
But even talking about talking about this uncovers some very large barriers to beginning the conversation. Only half of adult Canadians have a will; far fewer have an Advanced Care Directive, which sets out your wishes and who’s in charge of your health decisions in a medical emergency. The need for adult conversations across millions of kitchen tables is acute.
We’re fortunate to have been given a road map from that most engaging of doctor-authors, Atul Gawande. His book Being
Mortal: Medicine and What Matters in the End exposes the many shortcomings of doctors and health-care systems in giving our patients the death they deserve.
He asks that we ask ourselves five critical questions when facing a serious illness:
What do we understand about our condition? What are the goals if it worsens? What do we fear? What tradeoffs would we make or not? And lastly: What would a good day look like?
These questions aren’t cast in stone, but they do need to be asked often since illness is nearly always progressive. If your foot is amputated because your diabetes has worsened, your definition of a good day will change.
I’m not just talking about aging here, where we all get used to our declining functions. I’m talking about the much sharper declines brought on by illness. Many of my older patients fully accept that they’re declining. But that slow, steady ebbing doesn’t prompt a discussion about how they want to die, except to say they hope it will be peaceful.
Again, reality often strikes a different chord .
A study released this month in the Annals of Internal Medicine followed 26,000 retirees older than 50 from 1998 to 2010. It found that the over 7,000 people who died in the 12-year study period experienced a pronounced increase in pain, depression and confusion in the last year of their life – and that is if they weren’t in the 22 per cent who had cancer at the time they died.
These were people with chronic illnesses like heart disease and lung disease who were, for the most part, now aging and frail. According to the family members who completed the patients’ final interviews, the rate of depression among these retirees increased by 26 per cent and confusion by 31 per cent. And though pain was less notable, there was an increase in that as well. It seems that only the 22 per cent who had cancer at the time of their death were spared of all these hazards – a testament to palliative care, I’m sure.
So my job will begin to change this week. First, the Supreme Court ruling has given all of us – even the most reluctant patients and doctors – a new freedom to start what I call The Last Conversation. But just as important, I’ll need to listen to my patients even more carefully, as their needs and fears rub up against their beliefs and values. Physician-assisted death will be a small but vital part of the much larger arc of lifetime care.