Last Updated: Friday - 09/24/2010
Week of January 29, 2001
The need for palliative care
By BISHOP FRED HENRY
One of my best reads of the year was Mitch Albom's Tuesdays with Morrie. The book is a delightful thought-provoking chronicle of a relationship between a young seeker and his mentor who has amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), a degenerative illness of the neurological system.
Mitch writes that in all the time he was sick, Morrie never held out hope that he would be cured. He was realistic to a fault. One time, he asked Morrie if someone were to wave a magic wand and make him all better, would he become the man he was before?
Morrie shook his head. "No way I could go back I am a different self now. I'm different in my attitudes. I'm different appreciating my body, which I didn't do before. I'm different in terms of trying to grapple with the big questions, the ultimate answers, the ones that won't go away."
And which are the important questions?
"As I see it, they have to do with love, responsibility, spirituality, awareness. And if I were healthy today, those would still be my issues. They should have been all along."
At some time, in some way, we must all face the end of life. If you were suffering from a debilitating disease and only had a year to live, where would you like to spend your last months, in a hospital or at home?
Ninety-six per cent of Canadians agree that it is important for terminally ill patients to be able to spend their final days in comfort and familiar surroundings.
Currently 80 per cent of Canadians want to die at home but 70 per cent die in hospital due to lack of home care service availability.
Ninety-six per cent of Canadians agree that health care for the terminally ill should include social and emotional support, as well as medical care.
Seventy per cent of Canadians strongly believe that providing non-medical care for a terminally ill loved one is too much for most families to handle without outside support.
Nearly one in 10 Canadians are caring for someone with a long-term illness.
Most of us share a common hope, that is, to face death surrounded by those we love, feeling safe, comfortable, peaceful and free of pain.
A good death, regardless of the circumstances, means putting medical care in proper perspective and not allowing it to dominate. That is why thinking about the trajectory of illness is important.
In sudden catastrophes, the role of the doctor and health care team is to attempt to save lives. But when the outcome is less clear or the condition incurable, medicine needs to focus on palliation.
The word palliative comes from the Latin "pallium," meaning a shelter or a cloak. Palliative care seeks to shelter the individuals from the distress of illness, relieve symptoms and maintain function and comfort. It provides physical, psychological, social, spiritual and practical support to people with life-threatening illnesses and their loved ones.
We are used to recognizing that individuals with advanced cancer will die and that we can shift our therapy and planning to focus on comfort and quality. However, with other illnesses, the pattern of sudden crises resolved by medical technology interspersed with periods of slow decline make us neglect the need to face the fact that death is the inevitable outcome.
As a consequence, a lot of effort goes into acute rescue rather than planning for decline and working hard on symptom relief.
It was recently revealed that only 17 of the 69 people who committed suicide in Michigan with the help of Dr. Jack Kevorkian between 1990 and 1998, were terminally ill and were likely to have lived less than six months.
In the remaining 52 cases, the wish to die may be explained by the fact that 72 per cent of the patients had experienced a recent decline in health status. Autopsies were unable to confirm the presence of any physical disease in five of the 69.
Overwhelmingly, Kevorkian attracted a group of people who were desperate and depressed and didn't have the support systems to deal with their illnesses.
Frightened by the propaganda of death-seeking advocates of assisted suicide and euthanasia, many feel that dying is an inherently awful process. Dying is not easy. There will always be existential distress and suffering for anyone conscious of decline and the loss of good things of life.
I know that I will be very sad over the end of my golfing days, the loss of the hugs of family and friends in my life, a fine glass of wine, and the awesome beauty of so much of life. But I also know that there is no reason for me to be in severe pain, uncomfortable from shortness of breath or desperate for relief from nausea and vomiting.
Regrettably, many good people are in favour of assisted suicide because they have witnessed deaths that are bad, filled with pain and marred by needless suffering. These have occurred because physicians, health care institutions and governments have on the whole not made expert care of the dying a priority.
Given the expressed will of Canadians in polls, the idyllic days of government budgetary surpluses, tax cuts and rebates, it's amazing that palliative care in Canada isn't considered as an integral component of our current health care system.
We should work to change this state of affairs as we also attend to the important issues and questions identified by Morrie - love, responsibility, spirituality, awareness.
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