I am not yet frail but 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 have a right to know what I expect. While I still can, I must write those expectations down and put them 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 I become frail, what do I foresee needing for my continued well-being?

First, I want to be considered a person, not a patient, regardless of how much I depend then on care by physicians, nurses, personal support workers, therapists, pharmacists – that bewildering panoply of health professionals. 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 tied to the bed in room 6. And I want to retain my dignity; that hospital gown may be garb convenient for my caregivers, but its propensity to expose my nether regions to hallway passers-by is as far as it gets from dignified.

Second, I want to stay in my home and community for as long as possible. I want to die in my own bed, having taken loving leave of my family, friends and neighbours. Dying at home is more of a hassle for providers than in an institution, and the cost is not negligible. But it is far less than institutional care and yields immeasurably greater benefit to the dying person and the family.

Third, I want to avoid prolonged 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 about my very existence. Modern pharmacology has made available the tools both 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 in need of 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.

My wants and needs, 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.

Meeting them requires major changes to the policies and practices that guide us. Chief among them is rebalancing the status between care-givers and cure-givers. Scientific discoveries and its technologies have made possible the cure of diseases and conditions that were once incurable. Understandably, care-givers (bedside, nurses, RNAs, personal support workers and others) have taken a backseat to cure-givers. That is going to have to change if we are to meet the needs of the frail elderly, the ranks of whom will someday include just about all of us.

Another change requires the well-known silos of our healthcare ‘system’ to work together in a boundary-free way.

We need our legislatures to enact laws and regulations that reinforce more strongly the primacy of individual decision-making. The Supreme Court of Canada decision on assisted death is a shining example.

We need our politicians and health professionals alike to confront the obvious need for shareable health/medical records, including with the people to whom those records refer. And we must tackle the death rattle of professionalism; those laws and practices that allow the organized providers of care to take hostage the frail elderly and others in disputes over pay.

In early June, TVN – Canada’s frail elderly network – held a national forum to develop a strategy for the care of Canada’s frail elderly.  The forum considered what new health tools, practices and policies need to be developed to identify signs of frailty, and how care settings need to evolve to treat well and give maximum comfort to the frail elderly citizens of Canada.

There’s lots to do!

Comments

Ted Ball wrote:

Posted 2015/07/07 at 08:06 PM EDT