Further Adventures of the Geriatric Doctor-in-Law

My hordes of readers will recall “The Other Side“, about five posts ago. With both my parents long passed away, I am finding out for the first time about caregiving of frailty semi-first-hand through my wife’s folks. With my background, it’s now routine for a frontal lobe light bulb to go on as I recognize in one or the other of my in-laws the same impossible dilemmas I’ve seen hundreds of times in my patients over the years. And believe me, it’s a whole lot different from this side of the fence.

Robin’s mum Liz is forgetful from early Alzheimer’s disease, and also unsteady on her feet, both problems I see every time I visit patients. But as family we’re trapped in a complicated situation where I don’t have the option to say (like I’m accustomed to saying to patients) “Everybody feels that way, don’t worry,” and to get in the car and drive home.

One evening a few weeks ago Liz, alone in her apartment, fell backwards out of a rickety chair and spent fifteen minutes on the floor, and then another hour crawling over to the couch to try to get back on her feet. Fortunately my sister-in-law showed up and everything was fine, more or less. Liz, bless her heart, doesn’t want anybody to know she fell, refuses to give up the rickety chair, and won’t use her “Lifeline” button to call for help. She could have been on the floor all night.

Worse, she takes the attitude that eventually she’s going to fall and break something, land in the hospital, have complications, and die anyway. So what’s the point of all this fuss and worry about “safety”?

My wife Robin and I (and the rest of the family) in turning this situation over and over see it in various lights. Liz has always been independent and self-determined, but she probably doesn’t understand and gather together the facts as well as she used to, so she may not realistically be facing her risk because of the dementia. Next, putting ourselves in her place, this is about bitchy nanny-type relatives, kids (!) telling her what to do: only one ounce of gin. No going up stairs. Plus a lot of what is on our minds is just selfish: we are not the kind of people that just let their mum walk off the edge of a cliff… Or a different kind of selfish: something bad always happens just as we’re leaving for our place up the coast or on holidays, or in the middle of the night. It just makes sense to prevent it if we can.

What matters most? Should one way of looking at things take precedence in some situations (an injury or shortness of breath), and another in others (facing Liz who asks apparently reasonably, “Can’t I just do it my own way?”)?

And here I am as I was with my father-in-law Nigel going into the nursing home, having seen the video three hundred times, but never having to act in it myself. At the end of the usual show (as the doctor) I’m walking out the door thinking, “I’ve controlled the shoulder pain. They’ll just have to work the psychosocial stuff out.” But when I have to do that working out, as the limitation-of-responsibility attitude of my exit lines suggests, my long experience as a doctor for old people doesn’t give me any head start at all. The problems my wife’s family and I face are incredibly difficult and quite individual to the people involved.

Stay tuned for another post on what I think I’ve learned from my doctor-in-law experiences.

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The Developing Evidence Base

Since my last post on this subject (click here), there have been some developments in the ongoing effort to show the benefits of multidisciplinary primary care of frailty at home.

First, our friend and colleague Dr. Ted Rosenberg in Victoria has completed a very well-designed observational study of his excellent home-care practice in that city. Bottom line: better and cheaper care. I will provide reference to the details of his study as they become available shortly.

I’m also fortunate to be part of a small group of physicians pursuing funding for another study of our  HomeVIVE program in Vancouver which we believe will support the idea that we both better serve our patients, and save money, when we gather experienced motivated professionals together and provide comprehensive primary care at home.

Finally, we in BC have had conversations with colleagues in Toronto, and we are hoping to launch a bigger multi-center study that will examine the same outcomes (quality of care and cost) in various places across Canada.

All of us doing this work find that our practice experience, and both clinical and financial common sense, convince us of the value of the care model we practice.  But research of the type I’m talking about here will go a long way toward winning the battle to divert public funding from hospitals, nursing homes, and preventive drugs to sensible humane hands-on primary care.

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Young at Heart

I was in Prince Edward Island in October giving a presentation at a conference that ended with a musical performance by a group called  Young at Heart Musical Theater for Seniors (click the name to go to their website).

WOW!  The well-deserved response by the 200 or so care-providers-to-elderly at the conference, to the play about a lady turning a hundred, was a standing ovation.

“Fascinating Ladies” (the title of the play) wouldn’t necessarily get the same response from a Broadway audience, but its unaffected Maritime style and connection among generations story convinced me that it would captivate the hearts and minds of the generation that now lives in nursing homes.  Songs of the mid-20th century in precisely era-appropriate three-part harmony, and the kind of sentimentality that a tearbag like me can’t resist would work wonders for some of the frail people in facilities whom I know so well. What unassuming beautifully-done stuff .

The group is funded mostly through donations, and doesn’t tour much because of financial constraints.  But wouldn’t it be interesting to see a randomized controlled trial of the effect of a presentation by these people on the doses and cost of antidepressants in long-term care?  Imagine reinvesting pharmacy program dollars in a traveling musical show!

Consider contacting, supporting, and possibly inviting them to perform for you if you are really concerned about what it feels like to be old and frail, to live in the facility, and to not have a lot to live for.  Two thumbs up!

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Video of Me Speaking

At long last, I was able to get someone to videotape me doing a presentation. Now anyone interested can have a look at me strutting and fretting my brief hour on the stage here, as I have also posted it to YouTube.

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New York, New York

Just recently, I returned to New York City for 10 days. This was partly holiday, but also involved some interesting healthcare business.

First, I met with Paula Span (see other post), who was encouraging and helpful about home care of the elderly and publicizing the campaign to spread the word about its value.

Also, I spent a day with the doctors and nurses in the New York City home care program.   This goes by various names (please see my other post on the subject, where you can view a video describing the program).  One of the most fascinating things about this experience was the similarities between their program and ours in Vancouver, in spite of the fact that the Canadian and American healthcare systems are really quite different.  Those similarities include problems with caregiving and the importance of function in frail people at home, the struggle of covering crisis 24 hours a day, major and persisting difficulty with getting elderly people in and out of the hospital safely, and the clash of two philosophies regarding medication in frail old people.

Everyone familiar with this blog and my book understands that I’m squarely on the side of restricting frail elderly people’s medication to drugs that  promote comfort and function, assuming the elderly person or their decision-makers agree with that philosophy.  The wonderful professionals who kindly took me out on the road with them in New York, and met with me to discuss program planning, agree entirely.   The clash is between all of us and the things that seem to go on in hospitals these days.

But there’s hope, and some changes that have long been needed are beginning to happen.  Many thanks to Meng Zhang, Theresa Soriano, Cameron Hernandez, Laura Donnelly, and Mary O’Connor.

I also, by the way, had a fabulous time doing normal things in that wonderful city: Broadway musical, jazz, museums, the Empire State Building, US Open tennis, and restaurants.  OMG the food!  Still recovering …

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HomeVIVE update

About three years ago, I reduced my home care of the elderly practice radically, and most of the patients were taken over by a program called “HomeVIVE”, operated by Vancouver Coastal Health, comprising three family physicians and a nurse case manager visiting people at home.

Coincidentally, in the last few months, two things that happened: 1) I have rejoined the practice as a minor player (and another family physician has joined as well), and 2) Vancouver Coastal Health has upgraded the program to include especially frail people, with the stated objective of keeping these people out of acute and long-term institutions, and with significantly beefed-up staffing and resources.

HomeVIVE is still oversubscribed . There are many people waiting to be seen, and a waiting list of several months.  But the program now looks like the kind of basis on which a real comprehensive full-time primary care practice for frail people at home can be built.  It’s a genuine realization of a dream for many of us, although definitely still a work in progress. More to come.

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The Other Side

I was doing “full service” when I started out in general practice, including delivering babies. Obstetrics was a not-too-challenging routine part of my work (except having to get up in the middle of the night), but I never dreamt what having a baby meant
until we had one ourselves. I was astounded at my attitude and behaviour at 3
AM when a delivery room nurse tried to stop me from going with my thirty-minute-old
daughter to a “transitional” nursery, which the rules said she had to spend 24 hours in because of her score on some numeric scale. They had to call the administrator on duty and ended up making an exception, because nobody was going to take my baby away from me!  My attitude to delivering babies changed that night.

My parents both died years ago and neither of them was ever frail. But now my in-laws are both dependent: Nigel is in an extended care facility after a stroke, and Liz is forgetful and recovering from a complication in the hospital. I, who have done decades of medical care of the frail elderly with what I thought was sensitivity suddenly understand what it means to be responsible for partially helpless people, and to feel helpless myself.

Watching Nigel being admitted to the facility, I got more and more paranoid with the odor, the scatterbrained administration, the medication mistakes I thought I detected, the gaunt immobile inmates staring from their wheelchairs, and the rough technique of care aides transferring him to his bed at 1 PM in a dark institutional room.  My wife Robin was in tears and so was I, giving Nigel the best reassuring hug around the shoulders I could
manage after he told me he was scared and wanted to go home.

Nobody seemed impressed at my credentials. Moments after she told us everything was going to be just fine, I passed the staff lunchroom and heard the chief care aide laughing and chatting over coffee. Our guilt, bewilderment, frustration, and whimpering were Monday afternoon business as usual. And I knew it had been just so for me hundreds of times over the years, and how I must have appeared to so many honest worried people.

“Ve grow too soon oldt und too late schmart” says a fake-German motto on a bumper sticker.  And too late kind, and humble…

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Paula Span NY Times blog on Sloan

I’ve mentioned “New Old Age” before, the New York Times blog mostly authored by journalist Paula Span. I was fortunate to have Paula attend my talk in Manhattan in June, and even luckier to be featured in this recent post.

Some of the early comments on Paula’s article reveal a common misunderstanding of the main message. The idea that frail old people in general should avoid the hospital and preventive medication can be misinterpreted to mean we should withdraw the right to acute and high tech care from the elderly. Nothing could be further from what we’re after here. When you give frail old people a choice as opposed to dictating business as usual, they usually opt NOT to endure businesses usual. But it’s about making sure they have the choice.

More to come…

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Another voice for frail elderly care reform

A colleague directed me to this lovely article by Dr. Dennis McCullough, a family physician and geriatrician working at Dartmouth University in the US. You can follow links in the article to his website, where you will discover he has written a book on “Slow Medicine” of the elderly (an analogy, I trust, to “slow food”). His views line up exactly with the approach I’m trying to promote on this site. We’re all in this together…

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How Important is Diet for Old People?

On April 1, I presented a talk at a drug therapy conference in Vancouver in which I critiqued the evidence for benefit from healthy eating. Long story short, there is shockingly little evidence. And this is for all ages. Fat, sugar, and salt in the diet make almost zero difference to real health outcomes, according to good-quality studies. Antioxidants and fiber likewise.

If you add to that the fact that frail old people are almost never represented in studies, and that their differences from younger people, and from one another, make it almost impossible to generalize about prevention of any kind for them, the case for feeding them “healthy” food starts to look pretty weak.

Anybody who has tried the food in most nursing homes, especially where there is an enthusiastic nutritionist on the job, could be forgiven for deciding not to go back. And elderly people’s taste buds don’t work as well as they did when they were younger, so if we remove the sugar from the deserts, the salt from the stews and steaks, and the fat from everything including the ice cream, problems with weight loss and depression will only be made worse.

My conclusion: feed old people what they like! If you believe in multiple vitamin supplements, fine, add those, but it seems to me verging on criminal to take away one of the last and most easily accessible pleasures from these folks whose lives may most benefit from a little bit of comfort. And while we’re at it, it might be worth taking a look at our own eating habits and asking a few questions about why we don’t eat exactly what we like.

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Dr. Mark Nowaczynski’s wonderful film “House Calls”

I finally figured out how to post this. click here Mark is a pioneer of home care of the elderly, and a good friend. Several years ago, Ian McLeod (husband of Margaret Wente) produced this fabulous hour-long National Film Board documentary on Mark’s practice. THIS is how we should be doing business.

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Walrus Magazine discusses frailty

Thanks, Katherine Ashenburg, for your well-researched and well-written article on the elderly in the March 2011 issue of WalrusKatherine interviewed me several months ago as part of her research, and I was honored to see a few of my cranky comments appear in this classy and widely-distributed periodical.

It’s interesting that many people believe in the “compression of morbidity”, which is a name given to the idea that there is less and less frailty at the end of life. The evidence cited for this in the Walrus article was that people are entering nursing homes and experiencing other markers of frailty later and later in life, and also that there is less expenditure on the very old than on a slightly younger but still elderly age group. Skeptics might suggest that the delay in frailty is offset by increased longevity (people get frail later but they live longer so frailty lasts just as long), and that spending less on the very very old reflects the dawning commonsense idea that we shouldn’t be over-investigating these folks once they are frail.

Anyway, I definitely agree there are reasons for optimism, and it’s nice to see thought-provoking articles about home care and frailty reaching a wider and wider audience.

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Homegrown evidence for home care effectiveness

I met with Dr. Reva Adler, medical director of the Home VIVE program in Vancouver, a couple of weeks ago.  Home VIVE is a very effective primary home care of the elderly program that took over most of my home care practice a few years ago.  Its three doctors, and nurses have been doing a wonderful job.

Reva shared with me some interesting numbers. Taking about 130 patients from one of the physicians, and comparing their visits to the emergency room during approximately 2 years before the program, and during one year after it started, there was a very marked reduction in use of the ER. Reva figures approximately 73 emergency room visits were saved by that portion of the program during that time.

I’m particularly impressed that the program that was studied has a group of geriatric-oriented family physicians who don’t know the patients, on call during weekends and at night. This to me means that if health professionals familiar with the patients, or at least able to access their records, were responding to out-of-hours calls, the improvement in hospital utilization would be even better.

Readers of this site will understand that I am no fan of a lot of what passes for science where the frail elderly are concerned. The quality and “generalizability” are usually not very good. But here we have at least something that looks scientific saying that when we do good responsible primary care for frail people at home, we keep them out of the hospital.  With any luck, this kind of information will add credibility to the mountains of experience and common sense already telling us that we need to move in the direction of primary home care, and it might even get the attention of decision-makers.  Imagine if frailty care were actually coordinated, across the whole system!

Congratulations Reva and Home VIVE for helping to lift the burden off our acute care hospital system, and for proving it.

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How do I prevent disaster for a frail person?

Somebody recently told me they’re not worried about dying, they’re worried about the run up to it. It’s that run that we’re talking when we say “frail”, “fragile”, “Sunshiners”. The huge challenge is that what’s going to happen is pretty well completely unpredictable. So you have to be ready for ANYTHING, almost.

Lately, my wife’s parents have become Sunshiners, both experiencing memory loss and personality changes of dementia. Because my parents both died relatively young and didn’t experience frailty, helping my in-laws is for me a new experience. And believe me it’s very much different to live it with family members than it is (as I have for many many years) deal with it professionally. It reminds me of how much more real delivering babies became for me after we had our first one!

It seems to me there are two parts to staying out of trouble. The first one I’ll call “surveillance”.  Sunshiners live from day to day like everybody else, but they are unlikely to remember and tell you about a lot of what’s going on. So somebody has to check on them regularly. How regularly depends on how frail they are, and you have to know how long somebody can be left alone. For my in-laws, it’s about two days right now. For some behaviorally troubled very demented people, it might be almost no time at all.

The second part of avoiding disaster I’ll call “intervention”. This is when you do what you have to do to pick up the pieces when something goes wrong or changes. But what is that something likely to be? The common things are a minor illness (flu, urinary tract infection, etc.), a minor injury, reaction to a drug, or a behavior outburst.  There are also major illnesses like heart attacks and strokes, and major injuries like hip fractures. But what you are looking at might not be that easy to identify. Dad or Mum is just very strange or very different all of a sudden. In that situation you need someone to help you find out what’s going wrong and what you can do about it, and you need that help RIGHT NOW, not tomorrow.

That help takes the form of good solid trusted friends and family members, and also available healthcare providers, preferably working in a team. All of which may be hard to find.  But it’s worth the effort.

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Wonderful New York home care program

Last year, a colleague in Toronto told me about a very effective program in New York City.  A group of doctors do home care of housebound elderly, out of the largest organized home care facility in the United States, run by the Mount Sinai Practice Associates. I’m planning on visiting them sometime this year. Particularly inspirational for me it was their video entitled “Doctor in the House”.  You can take a look at it here.

I had the thrilling privilege of addressing the combined nursing and physicians’ homecare groups in New York City the evening of June 22, 2011. One of the things I found most interesting after the question period following my talk was that many of the most pressing and stubborn problems experienced in New York (and I think all over the United States) are very similar to the ones we have here in Canada. The two health care systems differ mainly in who or what actually pays the money. But communication among professionals, with families, and from hospital to community are a challenge everywhere, and so is the overall public mindset about the end of our lives.

Fascinating! I’ll be going back to New York in September, and hope to see some more of the Mount Sinai home care program firsthand.

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New York Times elders blog

I’ve run into a very interesting blog site associated with the New York Times. “The New Old Age: Caring and Coping” (click here).  Frankly, it looks like the kind of conversation I’m hoping people will eventually have on sunshiners.ca!  Meanwhile, I think it’s a good resource.

UPDATE July 9, 2011: Paula Span, frequent contributor to “The New Old Age” posted a wonderful blog June 29 here.  Paula is an author and journalist teacher at Columbia University, who as it happens attended my recent presentation in New York City.

The June 29 blog involves a no-win situation that comes up often for relatives of frail elderly people: what are the limits of advocacy?  So much of this has to do with your personality, and that of the people you’re dealing with: facility staff, nurses, doctors, etc.  There is a danger that a completely legitimate and reasonable sense of responsibility (fueled at times by some strident stuff in the media) will blow you off your accustomed smooth, charming, and reasonable  way of dealing with the world just to get the very best for your loved one.

Like so very many other things in life, you really need your best human instincts fully deployed when you wade into advocacy.  Good luck.

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Margaret Wente supports Sunshiners

Another powerful article from the Globe and Mail in support of reasonable care for frail elderly people. Thank you, Margaret! click here

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Globe and Mail article on home care

Read Rod Mickelburgh’s short but brilliant article on home care of the elderly. click here

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Questioning the Common Scientific Wisdom

Here’s an article from the Atlantic about research skeptic John Ioannidis. Should be required reading. click here

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What can I expect from aging?

This title has been the most popular for people coming to Sunshiners.ca, and I think the list of resources I posted might have disappointed some. So here are a couple of answers to this provocative question.

Expect the unexpected. People get more different from one another, and more different from “normal” as they get older. To the point where “normal” pretty well disappears. But certain things are predictable in a general way. First, you’re going to need help. Help organizing, and eventually help doing some pretty basic things like getting dressed. Whether you plan for that or not may determine what happens to you in unexpected situations (like a fall).

On the flip-side of that need for help, your independence is terribly important. Protect it! Don’t let anybody put you in a dependent situation unnecessarily.

Expect that your response to usual treatments in health care (like an operation, a medicine, or even investigations) will be unpredictable. Hoped-for good things may not happen, and unimagined bad things may happen. I’m definitely NOT saying don’t try for treatment, but I am saying watch carefully for what happens.

You can expect your friends and family to worry about you, but remember when they worry about your problems, they are also worrying about themselves. So sit them down, tell them what you want and need, and be honest with one another about what’s expected and what’s available. That kind of conversation can be difficult, but the road ahead requires it.

And now for the commercial: there’s a lot more on this topic in “A Bitter Pill: How the Medical System is Failing the Elderly”, my book on the subject. Or contact me directly.

John Sloan

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Cure vs. comfort focused care: new article from New Yorker.

“Letting Go”, a New Yorker article by Dr Atul Gawande. This is a very insightful look at the difference between care that focuses on cure and care that focuses on comfort, and the importance of understanding your priorities.

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‘Advocate for a more dignified, less expensive way to help frail seniors’ reports Tyee.

A very well supported article written by Tyee after we met recently over coffee. Click here to read it.

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Confused by medication? Looking to minimize drug intake?

Have a look at this short list of resources. Let us know how they helped!

Minimally Disruptive Medicine. A well-designed site featuring arguments for individualizing drug treatment. http://minimallydisruptivemedicine.org/

Healthy Skepticism. This Australian site, operated by Dr. Peter Mansfield, takes a strongly information-based approach to questioning the common wisdom with drug therapy. Probably primarily for professionals. http://www.healthyskepticism.org/global

Beers List. This is a drug list of medications which are known to be potentially problematic and elderly people. We feel no drug is intrinsically right or wrong for anybody. It depends on the problem, the person, the dose, and many other things. http://www.dcri.duke.edu/ccge/curtis/beers.html

Therapeutics Education Collaboration Podcasts. A series of somewhat irreverent broadcasts by highly qualified drug therapy critical reviewers. http://therapeuticseducation.org/

Team for Individualizing Pharmacotherapy in Primary Care for Seniors.  An academic group at McMaster University in Ontario working to promote rational drug therapy in the elderly. http://www.tippsnetwork.ca/

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Resources on aging issues

Browse these sites. They’re a great starting point for learning.

Public Health Agency of Canada Seniors’. This site provides a large amount of conventional healthcare information for elderly people on behalf of this Canadian government agency.  http://www.phac-aspc.gc.ca/sh-sa-eng.php?rd=senior_agee_eng

Canadian National Study on Health and Aging. A fairly no-nonsense technical site describes this very large ongoing study. Much interesting demographic information. http://www.csha.ca/

American Geriatrics Society. Publishers of an academic journal, the Society maintains a website concerned with public advocacy and education.  http://www.americangeriatrics.org/

American Association of Retired Persons. This portal leads to the vast resources of this well-known and diverse agency.  http://www.aarpinternational.org/

Were any of these particularly helpful? Comment below – let us know your opinion.

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I’m a caregiver. Where do I go for resources?

Look no further. Below is a short list of websites that are either well known to us or have very comprehensive resources. We don’t necessarily agree with everything on these sites, but present them as a starting-point for exploring certain topics.

Long-Term Care Planning Network. This is a well-organized site developed by seniors’ advocate Karen Henderson. There is useful information about caregiving, many information products for sale, and a lot of financial information.  http://howtocare.com/

Family Caregiver Alliance of US National Center on Caregiving. This is a huge American site which serves as a portal for a wide variety of caregiving resources: conferences, other websites, self-help, blogs, etc.  http://www.caregiver.org/caregiver/jsp/home.jsp

Eldercare Online. Genuinely helpful site which includes a very thorough library of books on caregiving.  http://www.ec-online.net/

Diamond Geriatrics. Peter Silin, a social worker, offers much caregiving information on this website and caregiving consulting services from his Vancouver agency.  http://www.diamondgeriatrics.com/

Connie Davis. She is a nurse practitioner with an active blogging site, also offering services as a speaker and consultant.  http://www.conniedavis.ca

Home Instead. This is the Canadian site for a large international commercial non-medical caregiving organization.  http://www.seniorservice.ca/

Mark Nowokzynski M.D. is a creative home care physician for the elderly in Toronto. This link is to his National Film Board short piece “Housecalls”.  http://www.nfb.ca/film/house-calls/

Which ones were useful? Which ones weren’t? Tell us your opinion so we can keep this list current and helpful.

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How should we decide who gets priority healthcare?

A 91-year-old woman needs a hip replacement. How quickly should she get the surgery? Paul Wilcocks discusses this controversial issue in his blog. Scroll to the bottom – a reader brings my book ‘A Bitter Pill’ into the conversation and connects the two subjects.

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‘The Writer’s Cafe’ talks with me about ‘A Bitter Pill’.

Click here to hear the full interview.

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The Toronto Star on ‘old folks’ and healthcare.

Click here to read the article.

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The Vancouver Province discusses medical treatment for the elderly.

Here’s an excerpt from Elizabeth Payne’s article in the Vancouver Province about my book, A Bitter Pill.

There is real anger in his newly released book. “The way modern medical care is practiced is all wrong for people near the end of their lives,” he says bluntly. Sloan says the elderly should be given drugs, such as painkillers, that help them function and make them more comfortable…Sloan’s experiences of seeing energetic patients transformed into near-zombies because of over-medication after trips to the hospital, have led him to call for radical changes to medical treatment for the elderly — including keeping them out of the hospital, if at all possible. These seemingly common-sense recommendations are radical because they swim against the stream of modern medicine.

The full article ran November 27, 2009.

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My interview with CBC The Current’s Anna Marie Tremonti

Click here to hear my interview.

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Know what you want: HAVE the tough conversations early.

Is it okay not to investigate and treat somebody when they get sick at home? This is a big scary question for a lot of people. Part of the answer for a Sunshiner is to know what the person wants and doesn’t want, BEFORE they get sick. Are you willing to take a chance of dying at home of something unknown, in order to avoid dying in the hospital of exactly the same thing with a label on it?

Nobody knows how often a Sunshiner’s life is “saved” by a trip to the hospital, but my experience tells me it’s rare. It depends what we mean by “saving a life”. Would living an extra few days count? What about living an extra six months? Is your life saved if you spend the rest of it in the hospital?  How accurate is a family doctor when he makes an educated guess at the home bedside that somebody has had a stroke or a heart attack?  Most of the time, staying home at the end of your life is a more comfortable choice, and I find that hospital investigation and treatment rarely makes any honest difference to what happens to somebody.

I think Sunshiners and their relatives need the rest of us to give them permission to take the risk of staying home if they decide they want to. Your doctors and nurses should use their training and experience to tell you what they think, you should trust them, and then you should decide for yourself.

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How do I keep a Sunshiner at home?

Sometimes people tell me I’m not being realistic and expecting them to keep their frail relatives at home. How can we deal with a sudden change in independence if we can’t get supporting help quickly? How do we know what’s wrong if the doctor won’t visit and we can’t get her to his office? I’m willing to look after him at home but I just can’t do the whole job by myself.

Resources to make home care realistic aren’t always available, but that is changing. And part of what we have to do speed that change up is kind of political: INSIST on home support, home care, 24-hour availability of help, and whatever else you need. Insist loudly over and over to doctors, newspapers, blogs, insurance companies, and governments. Expecting you to keep someone at home only makes sense if we back you up, but the resources to do that will become available only when we let people know how badly we need them.

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I’m a Sunshiner and I’m in ‘crisis’. What do I do?

One of the big differences between medical care that works for Sunshiners and ordinary care is how “crisis” is handled. Crisis for younger people is some sort of a big disaster, the kind for which hospitals were designed. Crisis for a Sunshiner is usually a minor health problem (like the flu or a sore backside from a fall), resulting in a major change in independence and function. Dad isn’t feeling great this week, so instead of being able to get to the bathroom by himself, he can’t get out of bed. The right way to deal with this is for a doctor or nurse to visit at home, decide what’s probably wrong, maybe start some treatment, and then WAIT to see what happens. The wrong way is to go to the emergency room, where nine times out of ten Dad gets admitted, and eight times out of ten he never sees home again.

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