Where do Older People and Concepts Like Healthy Ageing Fit in with Current Health Reform Conversations?
These days most agendas lead off asking that those present declare their conflicts of interest. I have one. As an old guy a few degrees north of 80, I have a keen, personal interest in changing the so-called healthcare system so that it does a much better job than it has done in the past or does now of helping older people live as well as we can. Happily I am still relatively hale. But I know full well that the day is not far off when the aging process will increasingly put limits on what I can do on my own. I could be one of the lucky ones who just doesn’t wake up some morning; that would be great! But it is far more likely that my so-far little infirmities will grow, turn into chronic diseases, and launch me into the early edge of that great big wave of aging Canadians who will experience the syndrome we know as frailty.
As that happens, what would I like to have from what we smugly call our Canadian healthcare ‘system’? That’s the one that costs the earth, threatens to bankrupt every province and territory, delivers results that are mediocre at best, and is glaringly inequitable in that it leaves the most vulnerable among us, poor, old, female, and frail people, exposed to the twin risks of failing health and financial ruin.
What do I want from the ‘system’?
First I want respect. I am not talking here about veneration. I am talking about ordinary garden-variety respect for the fact that in my old age I remain a real individual, a person with a history, a present, and a future, short as the latter may be. Some things do get diminished, even lost, as we age. Personally my hair went a long time ago, I have shrunk a good couple of inches, my memory is fast being transferred from my hippocampus to my cell phone; like Scrooge, I am not the man I was. But what has not diminished in me are those idiosyncrasies that make me me, not just another one of the collected old guys out there in the waiting room, retirement home, or wherever. I want my personhood recognized, even celebrated by the individuals, organizations, and institutions I will look to for help and support as I age and become frail.
It is true that we old folks tend to suffer from common diseases– diabetes, arthritis, dementia, and the like – but we are all different. We are different not only by virtue of our genetic inheritance and the individuality we developed as a result of our triumphs and defeats in youth and middle age. We are even more different by virtue of the mix of that wide variety of chronic ailments with which each of us must cope. Think of the piano; it has 88 keys in common but it produces as many different and original tunes as there are players who sit down at the keyboard. I want somebody to take the time to listen to my tune and the variations I produce on it as I age and as my various chronic diseases interact with the particular circumstances of my life.
I want care-givers who are interested in and know something about the music I am making. Our so-called system is loaded up with specialists and sub-specialists, each of them interested and highly skilled in their specific disease, organ, or bodily system but also largely ignorant of what’s on other specialists’ turf. I don’t want to nor do I or my family care-givers have the time or energy needed to schlep around hospital corridors with their un-interpretable signage telling my story over and over again to innumerable -ologists.
With respect to those ailments, we old folk are not looking for treatments or cures; most of us know full well that there is no ‘cure’ for aging, even though too many people still think of it as a ‘disease’. Make no mistake. The help that super-specialists can provide is welcome, but those of us with multiple diseases and conditions are looking particularly for help with the way those diseases and conditions act together in our bodies and under our living circumstances to contribute to our frailty and prevent us from being as well as we would like to be and feel. Rather than treatment, we are looking for care, which for most of us means help with alleviating the symptoms of old age that prevent us from doing the things we like to do. For some of us the help we need is physical, help with getting the groceries, cooking the meals, keeping the house clean – simple stuff when you are hale and hearty but not so simple when frailty overtakes you mentally, physically, or both. Some of us need do help that falls in the category of healthcare – interventional help to alleviate or control the symptoms and slow the progression of our diabetes, dementia, arthritis, COPD, heart failure, and so on. At the end, most of us will need palliative care and some will want help with dying. At some point many of us will need the intimate care of personal support workers to help us with the activities of daily living, getting out of bed, going to the toilet, bathing, dressing, and feeding ourselves. Having experienced the wonderfully tender care of a handful of PSWs a year ago when my wife died, I remain on a campaign to get those folks up on the pedestal together with the doctors and nurses who now reign as kings of the care-giver hill. And at the other end of the spectrum we older people need the help of a supportive community, people with whom we can share a meal, play a game of euchre, or watch a movie or a hockey game on TV. And, above all, we need emotional support, genuinely empathetic care that flows from the ability and willingness of our care-givers to share in the experience of our frailty. Tough on care-givers? You bet! But it’s what you sign on for when you become a care-giver. Genuine empathy is indispensable to effective care, especially to the most vulnerable among us.
This last, genuine empathy, has become badly eroded among health professionals. Associated Medical Services – its head office is here in Toronto – is trying hard to turn that around through its funding of what is called The Phoenix Project – rising from the ashes; the name itself tells you a lot and it’s not a happy tale.
The bottom line for most of us is that we really want the healthcare system to help relieve us from stress. That includes stress that originates in our ailments. But also, and perhaps more importantly, it is stress that comes from uncertainty. Everybody suffers from that – who knows what tomorrow will bring? But the stress of uncertainty is that much greater when you know that the number of your tomorrows is small, shrinking fast, and your limited ability to cope on your own along with them. Imagine yourself strapped to a stretcher, hurtling along in an ambulance, siren screaming, headed for Lord knows where – now that’s stressful – as is lying there in your curtained-off cubicle wondering both what’s next and how your very forgetful spouse will cope at home until your son can get time off from his job a couple of provinces away to take charge and make some other arrangements. And how to pay for it all! That’s stressful! But stress to the elderly comes also from the ever-present threat that frailty brings to our dignity, our autonomy, our independence, and from having to leave the comforts of home, familiar surroundings, family, and people who care for us and on whom we can depend. When I am faced with uncertainty I am stressed, and I am not happy.
I am a member of the Board of the Canadian Frailty Network, one of Canada’s federally funded Network Centres of Excellence (NCEs). We have a vision of Canada as best in the world for the ways our health/healthcare system meets the needs of frail elderly people. Our mission is to contribute to the evidence derived from research, the education of highly qualified personnel, the transfer of knowledge and understanding, and reinforcing the understanding of the public and frail people themselves on what frailty is and what all of us can to do to prevent, identify it, and alleviate its effects. CFN has made a good start but we have a very long way yet to go.
What do I want in my old age? Ask anybody and they will give you the same answer. We all want a health and healthcare system that helps us live as well and as happily as we can right to the very end.
A sincere thank you to Dr. Duncan G. Sinclair, emeritus Professor of Physiology and Fellow of the School of Policy Studies of Queen’s University, who kindly granted NexJ permission to repost his remarks given at Longwood’s Breakfast of the Chiefs event held on May 26, 2016.