Duncan Sinclair is emeritus professor of physiology and a fellow of the School of Policy Studies of Queen's University. He recently joined the board of TVN, Canada's frailty health network, and was inducted into the Canadian Medical Hall of Fame in April.
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While not yet frail, I am elderly. While I am doing everything I can to avoid becoming somebody's patient, my wife's recent end-of-life struggle has made me think long and hard about what my needs will be, if and when I become frail.
For starters, those who will care for me then should know what I expect. While I still can, I must put those expectations on record. Their obligation is to follow my advance directive without second-guessing what they think I really want when the time comes.
So when frail, what will I want and need for my well-being?
First, I want to be considered a person, not a patient, regardless of how much I then depend on a panoply of physicians, nurses, personal support workers, therapists and pharmacists. I want the values that are central to my being to be respected, then as now. I want to remain Duncan Sinclair, not the incontinent, demented old guy in bed in Room 6. And, I want to retain my dignity. The hospital gown may be garb convenient for my caregivers, but its propensity to expose my nether regions to hallway passersby is as far as it gets from dignified.
Second, I want to stay in my home and community. I want to die in my own bed, having taken loving leave of my family, friends and neighbours. Dying at home is a hassle for care providers, but much cheaper than institutional care, and yields immeasurably greater benefit to the dying person and the family.
Third, I want to avoid suffering. This is less about avoiding pain and discomfort than it is about maintaining my status as a person with the right to make my own decisions, including decisions about my very existence. Modern pharmacology has made available tools to alleviate pain and suffering – good palliative care – and to die with dignity at a time of my choosing. I want the choice.
And finally, when I become frail, dependent and needing ongoing care, I want to avoid being a burden on my family and society: emotionally, physically, financially or in any other way. I also want respect today for my productivity yesterday, as Atul Gawande's grandfather's contributions are celebrated in Being Mortal: Medicine and What Matters in the End.
My needs and wants, then, add up to a short list: respect for my continued dignity and personhood; staying in my home; no pain or suffering; and not being a burden to others.
Major changes to health-care policies and practices are needed to meet those needs. Restore the primacy of caregivers (nurses, RNAs, personal support workers and others). Scientific discoveries and technologies enable curing diseases and conditions, but cure-givers must share the front seat with caregivers if we are to meet the needs of frail elderly Canadians, whose ranks soon will include many more of us. Our elected representatives must reinforce the primacy of individual decision-making. The Supreme Court of Canada's decision on assisted death is a shining example. Politicians and health professionals alike must breach the walls of the silos of health care, especially to make possible shareable health and medical records. And they also must tackle the laws and practices that allow organized care providers to take hostage the frail elderly and others in disputes over pay.
There's lots to do!