This Is What 70 Looks Like: “How to Die Well”
The vast majority of my patients will die a natural death. At most 20 per cent will die from cancer after years of chemotherapy, surgery or radiation. If they live in Toronto, they’ll have superb palliative care at the end, courtesy of the renowned Princess Margaret Hospital and the five other teaching hospitals in the city. Their palliative care teams can step in and offer home services of placements to a hospice.
But not everyone lives in Toronto.
The real tragedy is that only 16 per cent of Canadians can actually access these services.
Last month’s Supreme Court ruling on patient-assisted dying (PAD) will now let us involve our families (or other designated care-givers) in deciding to ‘pull the plug.’
We’ll be able to manage where and when we die with a degree of peace, comfort and certainly we didn’t enjoy before. But again, the ruling applies only if we have a terminal condition and are enduring immense and unremitting suffering.
You may have Huntington’s disease, or ALS, Lou Gehrig’s disease. Yours may be a severe painful condition like spinal stenosis, or yes, even early Alzheimer’s. It may be progressive and untreatable tumors like those that caused Dr. Donald Lowe, the renowned SARS doctor from Mt. Sinai Hospital in Toronto, to rail against the system that prevented him from taking control of his own exit.
Even with the new liberalization of assistance in helping us to die well, the experience in other countries tells us that only about 2 per cent of Canadians will opt for this route.
So, even if the Supreme Court’s decision affects only a very few of us directly, its indirect effect has the power to change millions more.
That change comes in giving ourselves permission to have the kitchen-table chat with our families about our own values and wishes about how we want to die.
But before you have that chat, I’d urge you to do two things.
First, buy Dr. Atul Gawande’s book Being Mortal: Medicine and What Matters in the End. This gem by the Boston surgeon and New Yorker writer chronicles how our health system fails us all (Canadians as well as Americans) in coming to terms with the two things we can never outrun — aging and dying. Then he provides a road map we can use in asking the right five questions when we’re struck with a serious illness:
— What do we understand about our condition?
— What are our goals if it worsens?
— What do we fear?
— What trade-offs would we make or not?
— And lastly, what would a good day look like?
A companion piece to Being Mortal aired recently on Storyline, the PBS special that followed Dr. Gawande as he walked us through the end of life ministrations and care for four cancer patients as well as his own father who was dying. For me, it clarified just how hard it is to let go of treatments, of hope if you will, that ironically gets in the way of having a good death. In the rigor of how we treat cancers, the palliative care offered for these patients was measured in just weeks and even days. In other words, the harder the system fights to save our lives, the worse it can make our deaths.
NEXT: To-do Number Two
To-do Number Two?
Get an Advanced Care Directive TODAY.
They can be downloaded from websites like Dying With Dignity or obtained from your lawyer or doctor. A workbook is most useful in taking you through personal scenarios about the illnesses we are all heir to. It lets you ask the same five questions posed by Atul Gawande, but as they may apply to you at different stages and changing circumstances.
So even when we say “Don’t let me suffer. Let me go”, the reality is never that clear, even for us or our frail parents. What I hear most often in my office is a version of the following: “Mom slipped and fractured her hip, was hospitalized, developed pneumonia, mainly by aspirating fluids, can’t get up, can’t get to the bathroom, won’t eat.”
Now, those adult children have to make decisions around antibiotics, tube-feeding, diapering, nursing home placements. There are good days and bad days but the decline is inexorable. In my experience, no asks to be let out of these circumstances and I doubt that if the choice was there to do so, anyone I look after would choose that route.
The Supreme Court’s ruling requires you to be competent to voice this directive and that your illness, or disease or disability is irremediable and causing you unending pain or suffering. You have to be able to actually say this to your doctor.
But if you’re in the advanced stages of Alzheimer’s disease, like Margot Bentley the 82-year-old BC nurse who hasn’t recognized anyone in her family for eight years, but continues to open her mouth when prompted with a spoonful of food, dying is not so easy. Neither is speaking.
But what if Margot Bentley had an Advanced Care Directive?
It turns out, she does. She signed one in 1991 stating if she were to develop Alzheimer’s and didn’t recognize anyone in her family she should not be fed or given water. She should be allowed a natural death.
But there’s the rub. The BC Courts decided that it is more important to protect a human right of care than a medical directive. So Ms. Bentley lingers on, still “alive.’
So while the Supreme Court ruling opened a door that’s been sealed shut throughout human history, what awaits us in that room remains murky and dark at best.
This is not to say an Advanced Care Directive is worthless. On one level, it serves as a final diary, our own memento mori, of the last chapter of our own life story. But on another, I’m a big fan of the “momentum” theory of social change. If, say, three million Canadians have Advanced Care Directives this year, and next year that number doubles, and doubles again by 2017, then it will be difficult for the Courts to strike down what the majority of Canadians have individually enshrined in their own written decisions.
I’ll leave the final word on the subject of “a good death” to Atul Gawande: “Death is the enemy,” he concludes in Being Mortal. “But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
Dr. Jean Marmoreo, 71, is a Toronto physician, writer, adventurer and athlete. Her blog “This is What 70 Looks Like” took silver at the 37th annual National Magazine Awards gala in Toronto.