The REAL Reason Agitation is a Problem in Dementia

Further to the fuss in my last post over Global TV, here’s my loonie’s worth of opinion on what we in healthcare call “Agitation in Dementia” AKA PBSD (psychological and behavioural symptoms of dementia).

What would having severe dementia feel like? Well we understand that for demented people the ability to grasp what’s going on around you slowly dries up ’til it pretty well disappears. To speculate, it could feel like just having woken up out of a sound sleep and finding yourself in a strange place with strange people, and no understanding of how you got there or even who you are, all the time. Added to which the ability to express yourself also tends to go down the drain. Sounds like a recipe for a nightmare from which one doesn’t wake.

Many of us might even handle most of that just fine, but along with memory and language demented people often lose their emotional and judgment compasses. No surprise that some of them are fit to be tied and express their terror and bewilderment to the world. So they scream, hit and fight with people who approach and care for them, smash things, rummage around looking for whatever, and stay awake all night.

Now trying to help these people is not something mysterious that nobody knows anything about. It’s one of the difficult challenges in the health care business, so as you might expect there’s been plenty of research on it and lots written about it. If capable helpers who understand the usual process apply it conscientiously according to good prescribing principles and common sense, nearly all agitated demented people can be helped. Nearly all. Here’s what you’re supposed to do.

First, is the demented person unknown to you or is her “behavior” new or suddenly changed? If so, “round up the usual suspects”.  Do a very careful search for agitation causes that can be fixed. Examples: delirium due to infection or medication, pain, treatable depression, mania, return of an old psychosis, being abused, symptoms or discomfort from an unrecognized health condition (urinary retention, diabetes out of control, excess thyroid hormone), the list is long but not endless. For a doctor, listening carefully to what everybody has to say, asking the right questions, doing a sensible physical examination, and getting whatever laboratory and x-ray tests might help would be part of this search.

Misunderstood by most everybody is the other necessary early step, which is temporary control of the behavior for general safety and peace of mind.  One reason to do this is to prevent understandable but pointless expensive admission to hospital. And (I’m terribly sorry to say) it’s usually going to involve dirty old drugs. Temporarily! Typical doctor’s first mistake is to not demonstrate that the behaviour can be controlled while looking for its causes (because she’s afraid of using drugs, or the family refuses, or the nursing home has a “no antipsychotics” policy). Usually those poor people end up in the emergency room and topple into the acute care hospital meatgrinder, still screaming. Believe me, then they will get drugged!

No remediable causes? Next (and this is where the best and most experienced facility and psychiatric nurses work their magic) do everything you can to settle the person down. This is about love and comfort. Sometimes it takes weeks to find out what works. Again, I must apologize for talking about the real world, but if 24/7 companionship, back rubs every 15 minutes, daily supervised group programs, going for frequent walks, music therapy, a quiet private room, or having the kids visit daily works, it’s only useful if it’s available, longterm. And there is a play back and forth between trials of behavioral treatments like these and carefully reducing any drugs that were started. Otherwise, on to the next step.

Prepare yourselves: the next step is about medication. Remember, we may have started some drug back when the situation was intolerable to buy time to do the “remediable-causes” search. If this coincided with behaviour quieting down, we now have to look for side effects, and carefully creep the dose down to the tiniest amount of medicine that works.  Maybe none at all. Or, we may be starting from scratch. So, what does this behavior feel like? Suspicious fear? Unhappy anger? Out-of-control crazy fun? Frightened of his shadow? Nearly all medications work for calming agitated demented people, but they can be targeted at the apparent psychological symptom. For the above list, reasonable first-tries might be antipsychotics, antidepressants, mood stabilizers, or minor tranquilizers respectively. Tiny doses, to start.

Typical doctor’s next mistake is to fail to return and carefully evaluate the consequence of the first prescription (I’ve got to wonder what kind of pharmacology training did those people get in medical school?). Hello: Better? Worse in some expected or unexpected way? Both at once? No consequence at all? Nobody knows?  You prescribed the drug, so straighten it out. If side effects outweigh benefit or it doesn’t work, stop it and try something else. Typical doctor’s next mistake: “piling on”. The drug isn’t working, but caregivers insist it can’t be stopped, and frightened doctor goes along. Result: a dangerous interacting opaque stack of pills.

Over weeks, with patience and determination, we arrive at the best, simplest, safest effective medicine and dose. Any patient still in trouble after all of the above? We need help. And then begins or continues the tireless round of re-evaluation, trials of drug dose reduction, searches for remediable causes, family and care staff counseling and education….

Sound easy?  It isn’t! And that’s why magpies like Global 15 x 9 get to make such a repeated loud attention-grabbing racket about the way this problem is mishandled. We (doctors, nurses, and (yes while we’re advocating for care shared with patients) family members) aren’t willing to do the exemplary difficult job required. Simple as that.

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It has a new meaning! Global TV’s “15 x 9” revealed to me last week a spectacular level of journalism nonsense and dishonesty. Here’s what happened.

A producer called and asked if I would appear on TV giving my opinions about antipsychotic medication in dementia. I explained that in good conscience I couldn’t say what I suspected she wanted: “These drugs should not be used and should be outlawed for these patients.” My view is radically different. The problem with antipsychotics (and a lot of other drugs) in elderly people, especially demented people, especially in nursing homes, is bad nursing practice, bad medical evaluation, and bad prescribing. The drugs themselves of course are only good or bad in context of how they’re used. But that’s not what we get from the media, over and over again.

Fine, said the producer, we’d still like to hear from you. She said she found my point of view interesting and that discussion and controversy was what the show was all about. At this point, I mentioned my book and the producer agreed that it could be promoted in their TV piece, which seemed a fair bargain for the unpaid trouble I was going to. As usual in these situations, she was in a hurry. Could I find a patient to interview? I made the necessary adjustments in my schedule, and even offered my poor mother-in-law as a “patient” to give them some visuals. Shooting the interview took almost an hour with (I thought at the time) good long discussion of pros and cons, difficulties and trade-offs, and my version of the reasonable procedure to help troubled and behaviorally difficult demented people.

Then (Saturday, January 21, 2012 7pm PST) the segment aired. I faced the TV expecting an interesting exploration of the complex issues.  My mug appeared for about one minute, saying something like, “Oh yes, it really is a big problem.” The book wasn’t shown or mentioned. The whole rest of the piece was a righteous diatribe against antipsychotic medication, and advocacy for getting people off them at all costs. A nursing home claiming to discontinue these drugs was featured, the message being all you have to do is stop the poison and dear old people return to normal.

Nothing about staffing issues in facilities and the cost of supervision, nothing about what you do with people who are still terrified and screaming even when exposed to aromatherapy, back rubs, cats, and the best nursing care in the world, nothing about the need to be vigilant and careful in prescribing, nothing about the real world of behavior problems in dementia and the scary tough choices that have to be made. The thing was just a simple one-sided misinforming slam dunk exactly like what the media has already shown us a dozen times over the past several years.

My perceptive readers will wonder if I’m just mad at “15 x 9” for not promoting my book. I wouldn’t deny that. I kept my side of the bargain and they didn’t keep theirs.  But what I really find upsetting is the producer and host both knew perfectly well the complexity and unavoidable tough compromises in caring for these most difficult patients, and yet went right ahead with their dangerously one-sided scare-story, calculated to grab listeners’ attention. Ladies, you underestimate your viewers.

I should mention to avoid misunderstanding that the local BC Global TV by coincidence did a news piece on my home care practice recently, and they were courteous, professional, and honest with me. Contrast that with the national producer’s promise to look into why I couldn’t seem to find the antipsychotics piece online, and to get back to me. Deafening silence. Busy with her next work of science fiction.

I promise a post here within a week or two setting out what I think is wrong with what we do to behaviorally troubled demented people. Too bad my average of 20 or so hits a day on this site won’t be disabusing one National Global TV listener in a thousand. But for anybody reading this, a few don’ts: Don’t trust National Global TV’s “15 x 9”, it exists to sell. Don’t overreact to histrionic oversimplified nonsense from any source about medication in dementia. And if you happen to be approached by a Global TV producer, don’t believe anything they say, and don’t let them use your name. I certainly never will again.

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House Calls 1

Under this heading, I’m going to post a few anecdotes of my home-care practice experience. I hope these will be taken in the spirit in which they are intended. That is a window on a peculiar kind of practice which is often difficult, sometimes very rewarding, and always fascinatingly eye-opening. The names have been changed to protect the innocent.

The Arch-Conservative

Marge is 85, and has moderate dementia.  She has resisted possibly beneficial changes to her Parkinson’s medication, because she doesn’t like change.  One time when I see her in her 11th floor subsidized-housing high-rise apartment, she has a new pull-out sofa bed.  She says she is delighted with the bed (it’s very comfortable), but I see that the thing is sitting in a partly-open position.

I suggest to her that it’s meant to close up into a chesterfield.  There is a metal bar, however, that has to be pushed down, before the front part can be pushed under to form the seat.  Marge is unable to do this.  I show her how, by leaning down on the bar, even she can accomplish the folding-up.  She worries, however, that she will be unable to unfold it.  I suggested she could get help from one of her neighbors or from the building manager, but she doesn’t want to bother anybody.

Six weeks later I visit again, and the bed is still in the same partly-open position. I make the same suggestion, but she’s still determined not to bother anybody, not to return the thing to the store, and not to risk losing her bed by folding it up into a chesterfield.  And not to change her Parkinson’s medication.

I could tell that Marge’s Parkinson’s disease was quite a bit worse than the last time I saw her.  She was nervous, and not interested in my suggestions of increasing her medication.  We talked back and forth at cross purposes for about 15 minutes; finally no way would she concede that it was about trying something out to see if it would help.  Dead set against change.

I’ll have another go in three or four weeks.  But coming off that, and trying to get in to see a new patient in the West End, I was driven crazy by “traffic calming” detours, and ended up having a shouting match with firemen whose truck (while they shot the breeze with bystanders in front of an apartment building where nothing close to an emergency was going on) was parked diagonally so as to block the street .  I think frustration must be contagious.

Crap Man

I was called by the long-term care case manager to see Ron who lives in an apartment.  My contact is to be Rosa and I have the patient’s apartment number, as well as Rosa’s, in the same building.  The building must be one of the most advantageous location in town, with its apartments on the north side facing a view of the ocean and mountains.  Even those facing the city have a beautiful outlook.  The windows are half-height, typical of the 1960s.

Approaching the front door, I detect a difference between the structure and location of this place, and its condition.  The intercom is filthy and broken.  There is graffiti around the entrance.  I buzz Rosa’s number.  Static spits at me after a few seconds, and then I hear the click of the door.  The elevator is stinking and defaced inside, and provides a bumpy ride to the fourth floor where Rosa is waiting, a thirtyish pleasant lady.  We get back onto the elevator and head up toapartment 902, Ron’s place. Rosa opens the door with her key.

I’ve seen some unbelievable habitations in my work, but this one is about as bad as anything I’ve run into.  The carpet is matted with dirt, and dotted with cigarette burns.  Across the living room, rubber-backed curtains are clothes-pinned shut, yellowish flakes of rubber backing all over the floor.  Boxes and papers are everywhere.  The smell is indescribable:  very strong mix of dirty man, feces, urine, rotten food, and cat. Rosa takes me through a door to the bedroom, where Ron is lying in bed.

He is a jovial.  Lots of chummy well-educated familiarity to let me know I’m dealing with somebody who has not only been to university, but also spent plenty of time in a fraternity house.  He refers vaguely and obliquely to “My problem”, but doesn’t answer questions about why he is in bed, why he can’t walk, whether he has any pain or not, whether he’s ever had a stroke before, etc. etc. Rosa shows me a blister pack with medication for high blood pressure and depression.  His blood pressure is quite low, and he’s what we call disinhibited, nowhere near depressed. As I pump up the blood pressure cuff I realize he’s drunk, at 11 a.m.  He seems to have normal strength and circulation in his legs, but can’t, or won’t, sit up in bed, stand, or try to take steps.

I offer to come back and he accepts. Back out in the hall I asked Rosa what’s going on.  As far as she knows, Ron never gets out of bed, drinks all day, eats pizza and Kraft dinner (the former he orders, the latter she cooks), pees in diapers and tosses them into a box at the foot of the bed, and has bowel movements into the same box.  Her job, apart from the Kraft dinner, is to clear away the box, but he only allows this every several days, to control the cost.  Unbelievable.

On about the third visit I broach the subject of his drinking, he flies into a rage, tells me to get the fuck out, and that’s the last I see of him. Repeated phone calls go unanswered, Rosa tells me he refuses to be seen.



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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!  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, 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.

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.

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.

Therapeutics Education Collaboration Podcasts. A series of somewhat irreverent broadcasts by highly qualified drug therapy critical reviewers.

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.

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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.

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

American Geriatrics Society. Publishers of an academic journal, the Society maintains a website concerned with public advocacy and education.

American Association of Retired Persons. This portal leads to the vast resources of this well-known and diverse agency.

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.

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.

Eldercare Online. Genuinely helpful site which includes a very thorough library of books on caregiving.

Diamond Geriatrics. Peter Silin, a social worker, offers much caregiving information on this website and caregiving consulting services from his Vancouver agency.

Connie Davis. She is a nurse practitioner with an active blogging site, also offering services as a speaker and consultant.

Home Instead. This is the Canadian site for a large international commercial non-medical caregiving organization.

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”.

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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