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Respecting the needs and wants of the elderly and the frail

Respecting the needs and wants of the elderly and the frail

Duncan Sinclair is emeritus professor of physiology, a fellow of the School of Policy Studies of Queen’s University, and the former dean of our Faculty of Health Sciences. He recently joined the board of TVN, Canada’s frailty health network, and wasinducted into the Canadian Medical Hall of Fame in April. This piece was originally printed in the Globe and Mail on July 14th, 2015.

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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!

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Your thoughts are welcome in the comments below, or better yet – stop by the Macklem House. My door is always open.

Richard

J H Coyle

Wed, 06/28/2017 - 09:27

The above comments mimic my thinking a lot these days. Once you pop over 80 ‘stuff’ just seems to get harder and harder to accomplish. The mind says yes you can But the body just seems so reluctant to cooperate. Here in the US, physicians and politicians can not seem to agree on the correct end of life procedures. Here I am in a great dilemma – it is great to live here in Sun City, AZ but there is no rational end of life scenario. So the dilemma becomes how to live in the sun belt and still have enough stamina to get back to Canada for the end of life drama. If anyone has a solution please let me know. – – JIM – – Q Meds – –

J H Coyle

 

Thanks for sharing this, Jim. I am sorry to hear you’re in a tough situation down in AZ. I hope everything works out for you – we’d be happy to have you back early, you know!
Richard

reznickr

Rosemary Lysaght

Wed, 06/28/2017 - 09:28

There is wonderful advice and food for thought in this piece for policy makers, educators and students. There is also resounding endorsement for the compassionate and interprofessional care efforts we have been building in the Faculty for several years. This encourages us to continue down that path.

Rosemary Lysaght

Dr Larry Komer

Wed, 06/28/2017 - 09:29

Duncan Sinclair was one of my respected profs when I trained in physiology and later when I was in medical school. I agree with his sentiments.
In addition, I really think that we need also to focus on the prevention of frailty and dementia so that we all have as many healthy years as possible. Recent research shows the need to restore hormones and reduce inflammation as a means to reducing serious chronic illness such as sarcopenia (frailty), stroke, heart attack, diabetes, arthritis and depression. There is now a very large body of research to show that hormones can safely be restored. More and more we are seeing that inflammation is at the core of many chronic illnesses. Similarly eating properly, exercising and sleeping well need to be encouraged. Let us make sure that we tune and maintain our bodies as well as we do our cars!

Dr Larry Komer

reznickr

Wed, 06/28/2017 - 09:29

In reply to by student

Thanks for your comment. I agree that the research in this area is fascinating and will undoubtedly move quickly in the next few years.
Richard

reznickr

Jo Mather

Wed, 06/28/2017 - 09:29

I plan to use this as the basis of my own list of wishes that Inwill share with my family, thank you for expressing so clearly what so many people think but may be afraid of saying!

Jo Mather

EArnest Sterns

Wed, 06/28/2017 - 09:30

There has been a sea-change in attitude to death and dying. It is almost on the right track. Dr. Sinclair has put it succinctly. Having had decades of personal experience with patients in their terminal stages it is encouraging to see the momentum shift and now it is vital that the politicians be made aware that legislative changes are required and soon.
E Sterns

EArnest Sterns

George R. Gerula

Wed, 06/28/2017 - 09:30

An essential primer for practitioners and politicians concerned with formulating law and practice, prior to implementing their own research on the topic, and compulsory reading and understanding before legislation!

George R. Gerula

Trisha Parsons

Wed, 06/28/2017 - 09:31

This is an extremely helpful reflection and highlights the value of sharing our personal thoughts on profound topics. The three lines that stick with me the most after reading it are: “cure-givers must share the front seat with caregivers if we are to meet the needs of frail elderly Canadians”, “I also want respect today for my productivity yesterday”, and “I want to remain Duncan Sinclair, not the incontinent, demented old guy in bed in Room 6.” Thank-you Dr. Sinclair.

Trisha Parsons

john arber, meds'71 in London, Ontario

Wed, 06/28/2017 - 09:31

Wonderfully expressed. I am sorry to read of your wife’s end of life concerns. You were our physiology professor for class of ’71 and I recall you quite well. Yes, indeed the court’s ruling has sent a lot of people scrambling, mostly to better clarify their most personal beliefs. This is good. My graduation year indicates that my thoughts are trending the same way. There often can be a religious/spiritual awakening as well, with a return to a worldview, previously not examined in detail.
Warm wishes Dr. Sinclair and be as well as you can be. I am all for night wear from home!

john arber, meds'71 in London, Ontario

Wendy Johnston, MEDS 85

Wed, 06/28/2017 - 09:32

Duncan Sinclair voices the wishes of so many my friends and family members, as well as patients (although I am sad that he left us doctors of the list of caregivers).

As I reflect on what a good death could be I often think of Tennyson’s “Crossing the Bar”

Sunset and evening star,
And one clear call for me!
And may there be no moaning of the bar,
When I put out to sea,

But such a tide as moving seems asleep,
Too full for sound and foam,
When that which drew from out the boundless deep
Turns again home.

Twilight and evening bell,
And after that the dark!
And may there be no sadness of farewell,
When I embark;

For tho’ from out our bourne of Time and Place
The flood may bear me far,
I hope to see my Pilot face to face
When I have crost the bar.

I think that our medical system has been intent on creating safe harbours, and the breakwaters that shield us from the natural ebb and flow of the tides of life and death can create more then “moaning of the bar” when we are ready to embark. Small wonder that leaving the apparent security of the acute care system seems the only way to enter the “tide as moving seems asleep”.

I wonder whether physician hastened death -a medical construct – will be any better. Much of the discussion has seemed to focus on the needs of the system and practitioners to control the process including just who would be eligible. The act of hastening death will be no substitute for caring for the dying.

Wendy Johnston, MEDS 85

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