Pandemic

NB: this note was posted and updated March 20-26 2020. Big changes will no doubt occur to make much of what I’m saying simply wrong in the near future.

Sounds like the title of ER doctor Dan Kalla’s thriller published in 2005 – and the origin of the much nastier bug in that story is the same as that of our own COVID 19. But the virus that starts in China doesn’t have to be as much of a killer as Dan’s fictional one to have monstrous consequences, as we are finding out.

The media talk of nothing else, borders and schools are closed, non-democratic countries have literally shut their societies down (with probably better epidemic results than we are seeing and will see around here), stores are raided for toilet paper, food, and hand sanitizers, untold millions of ordinary people are stuck at home or stuck in a foreign country and many are out of work and may not be able to meet rent and nutrition costs, a corporate credit crunch threatens, stock markets have crashed like it was 1929, and governments have promised vast billions to shore up the economy. Health professionals, hospitals, and nursing homes are locking down and getting ready (if they haven’t already experienced it) for a tsunami of critical respiratory failure and deaths.

This in response to a virus infection with symptoms often undetectable or not much worse than the common cold and generally less disabling than the flu, with a test-positive rate of somewhere around 1% in heavily-affected areas, and a death rate effectively zero in kids and around 15% in people over 80, average 1-2%. The trouble of course is it’s a brand-new bug and on the day it appeared nobody was immune. A vaccine is probably well over a year away, there are shameful runs on antivirals and other medications imagined to be effective at treatment, none of them proven so far.

But the often-repeated publicly-available and alarmingly advancing statistics may not be completely reliable. Death rate (it’s already been pointed out) is the number of people who have died divided by the number of people who have the disease. The deaths can’t be minimized (you’re either dead or you’re not), but that number may be inflated because people who either test positive or clearly have symptoms of COVID (especially the elderly and most especially the frail who die all the time) may die of entirely different causes (heart attack, pulmonary embolism, stroke, bacterial sepsis) and yet have their death attributed to COVID. On the “denominator” side (the number of people who have the disease) there is a huge probability of minimization: we only report test-positive cases. Millions of children are probably infected and just have common-cold symptoms and millions of older people with the virus have just a suggestion of symptoms (chills, sore throat, runny nose, or something else) and don’t meet criteria for testing. So the death rate must be exaggerated (at around 10% at the moment, for example, in New York City). I’m guessing it’s a fraction of 1%.

How much permanent damage will this virus do before it settles down into a childhood illness with everyone else immune? Unfortunately only time will tell.

I’m a family doc who has nothing but frail homebound patients: people unable to get out to see a doctor, average age high 80s, nearly all unable to get around and/or remember much. I’ve done decades of residential care. From that point of view I worry there’s a big and theoretically preventable problem looming, which I don’t think so far we are doing enough about.

The Canadian Institute for Health Information (CIHI) found in a 2016 study that about 7% of care home residents had a do-not-hospitalize (DNH, also known as MOST 2) directive on their charts. Ten times that proportion were not to be resuscitated from a cardiac arrest (DNR), but that apparently encouraging statistic doesn’t mean much when very few cardiac arrests in care homes are witnessed. Would, in other words, have any chance at all of surviving.

Care-home residents – along with my frail elderly patients living at home – are the people most likely to die of anything that afflicts them, and among the enlightened physicians and families of that DNH 7% a carefully-considered decision has been made to favour comfort over allegedly life-saving trips to hospital critical care, if the flu for example results in respiratory failure, heart failure, or a semblance of septic shock. These people, that is, experience the benefit of a comfortable (medicated if necessary) death in a familiar surrounding with the possibility of near and dear folks close by, as opposed to death a little later in a chilly, busy, businesslike hospital ward where (certainly in this pandemic setting) nobody they’ve ever met before is around to hold their hand.

But worse in a way, we now risk having in hospital many of the 93% of non-DNH care home folks whose family and physician haven’t understood what hospital nearly always means for such a person: complications and a good chance of dying. Anyone with a serious problem that could benefit from being in the hospital may in this strangely disruptive COVID pandemic find no room at the inn. Heart attack, stroke, overwhelming infection, serious accident, catastrophe in the abdomen, lung clot – the list goes on: relatively healthy younger people may not get the aggressive likely successful care they badly need.

I think we are lucky in Canada. My limited experience of the United States (mostly from talking to colleagues there and reading) suggests that the US society’s adulation of its healthcare system (and willingness to pay a world-record price for it) results in overuse of critical care: hospitals and specialist doctors. I was stunned reading Dr. Paul Kalanithi’s amazing book When Breath Becomes Air to understand that this brilliant neurosurgeon dying of brain cancer was rushed to hospital and taken into the intensive care unit on the day he died. If that kind of response to end-stage obviously irremediable disease is usual, no wonder New York City is screaming that it needs 90,000 respirators!

We all must wash our hands, self-isolate, maintain social distance, stay away from work if we are sick, and go to the hospital only if we are really in trouble. But I think we should be considering carefully and humanely very elderly and frail people in care homes and elsewhere for whom we’ve been afraid to make and document a comfort-first decision. I believe frail elderly people and our hospitals are one another’s worst enemies. But never so much, I’m afraid, as in the next few months.

This website gets very few visitors. My opinions are well-known but right now most people are preoccupied thinking about other things. I’m keeping my fingers crossed that a few trusted voices in the community understand this situation and will do something about it, so we can make changes in frail people’s care plans in time to make a difference.

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Careful What You Wish For (or, Creating a Monster)

About four years ago I had a meeting with a dear and trusted colleague and a bunch of Vancouver Coastal Health administrators. The chief executive officer and her group said “We have a culture of admission here”. Too many elderly people were being admitted to hospital through the big-city emergency room in Vancouver and they weren’t benefiting. And they were costing a lot of money.

Silence in the room.

I said to the assembled potentiates, “Put Jay (my trusted colleague) and me in that ER and we will turn that around for you in three months.”

“Who’s going to organize it?” they asked, and each of us pointed to the other. Jay it turned out was busy defending our home care of the elderly program and doing a lot of other things, and so making real of my boast fell to me.

The result was “EDiCare”, a unique program with a lot of funding and a lot of flaws. It arranged for me and as many doctors as I could gather together for weekday duty, plus a bunch of nurses spectacularly experienced and qualified at clinical care and dealing with our public health community system, to consult in a little office in a back hall of the huge ER. We started out feeling our way, and slowly convinced the emergency room doctors, nurses, and administrators we meant well, knew how to care for old people in the community, and were pretty good at basic critical care too.

Fast forward four years. About a year ago I left the EDiCare Medical Coordinator job and then quit working in the program altogether, moving outside Vancouver and slowly cutting my practice down as I got ready to retire.

Shortly after, one of my remaining patients in Vancouver got into trouble. She had been in the other big-city hospital with heart disease that nearly killed her about two months ago, and was discharged home still in a bit of heart failure but having survived her near-death experience. I look after a lot of medically sick frail elderly people at home and am pretty good at dealing with heart failure, but with this lady there were too many complicating factors, not enough laboratory support, and a risk that treating her heart failure too aggressively could make her worse. I referred her to a geriatric medicine specialist, and he recommended we admit her to hospital to get her treatment properly organized, and going against my instincts and everything I had been teaching and encouraging my team to do in the emergency room, we sent her in to be admitted.

There is a right time to do the wrong thing and I was pretty sure this was it.

But my team (no longer really mine) and even the hospitalist who would have admitted her thought she was “looking too good” to bring into the hospital. Over the years I had convinced these people to be skeptical of bringing frail elderly people into the hospital because of the risks of admission, and to at least try to get them out of trouble at home. But as I tried to explain I had already tried in this situation and it hadn’t worked out. She needed admission! But the team and the hospitalist sent her home.

My patient hung on in her little apartment still short of breath, still obviously in heart failure, still needing pretty well daily medication adjustment and monitoring with laboratory studies that take two weeks to obtain, a mentally intact person who wants to get better. Eventually we succeeded in getting her on enough medication to control the failure without drying her out. Happy ending but quite honestly much riskier for this dear lady then a week or two in the hospital.

Hospital was what she needed. But I couldn’t do it because of the culture of discharge we had created at the behest of our local administration, convinced in our hearts and minds that for frail elderly people community care is good and hospital care is bad.

And that’s true. Most of the time.

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I’ve moved

For over 10 years my wife and I have lived in two places. We’ve travelled back and forth each week between our home in Roberts Creek on BC’s Sunshine Coast and an apartment in Vancouver, where I’ve conducted my part-time practice looking after homebound frail old people with the HomeViVE program.

A few months ago we gave up our Vancouver apartment and are now full-time “Coasters”, but I’m continuing my Vancouver practice with its 24-hour on-call coverage for the foreseeable future, letting it diminish by attrition. At the same time, I’m looking to establish a home-care of frailty practice here on the Coast, and am gradually learning about the healthcare culture here and hoping I can make a small contribution to it.

My medical-legal work continues as before, centred in Vancouver but confined to Tuesdays.

I realized a few months ago that this is the first time in my life I’ve left Vancouver with no intention of returning, although where we now live is still a virtual stone’s throw from town in spite of the vagaries of BC Ferries. So far Robin and I are happy with the way things are developing, and we love our home and the relaxed atmosphere of this community.

I will try to describe this transition as it develops by posting here, although I have lately neglected Sunshiners.ca a bit in favour of John Sloan’s Reviews, my restaurant and book review website.

 

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FMF Award Acceptance Speech

A couple of very good friends in Vancouver somehow convinced the Canadian College of Family Physicians and Canadian Geriatrics Society to give me an award for innovation in geriatrics. I don’t deserve it. Here is my acceptance speech at the Family Medicine Forum in Montréal on November 10, 2017.

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A Very Interesting Medical Book

I post this here having already put it in my “Reviews” website because I think it’s well worth reading and I take a slightly different message than most reviewers from it.

Kalanithi, Paul. When Breath Becomes Air. Random House, New York. 2016. NF;7/17.

I had a few mixed feelings about this very popular, and very good, book. I hope my swimming against the streams of sickness/death and the American physician isn’t all envy for this fine writer’s success, although nobody would envy his untimely death. Dr Kalanithi describes while trying to maintain humility his superstar status in neurosurgery training and enviable future as one of the best neurosurgeons in his country. No one could avoid emotion and fascination when he tells us he’d looked at hundreds of seriously abnormal x-rays and scans, but the one he now confronted was of himself.

He was a literary guy, encouraged as a child to read. Not only did he do that, but he took to heart the ideas he found in literature and philosophy and had a real philosopher’s curiosity. He even went into neurosurgery as a kind of physical experiment in philosophy of mind, after finding academic literature too political (and is it ever political). And unusually among physicians and just about everybody else, he saw science’s limits:

… Scientific methodology is the product of human hands and thus cannot reach some permanent truth… As strong as (reproducibility and objectivity) make its ability to generate claims about matter and energy, it also makes scientific knowledge inapplicable to the existential, visceral nature of human life, which is unique and subjective and unpredictable.

Wonderful. He was pleasingly Gawande-like picturing a feckless resident who promises to do an extra bit of work for him as a patient and then doesn’t, and critical care subspecialists arguing fine points of care over his dying body in the intensive care unit. He knew the profession is far from perfect.

But if we are looking for perfection, Paul Kalanithi, readers must conclude, came pretty  close. The book is his epitaph. He was a fabulously gifted and industrious young doctor dying (and dead when the book is published) and giving us his “words (which) have a longevity (he does) not.” His girl child is a baby when he dies, and he finished his book with a wise and thunderously moral message to her:

When you come to one of the many moments in life where you must give an account of yourself, provide a measure of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.

When I try to understand my real feelings about this magnificent final act, it’s not Paul Kalanithi himself that keeps me from alternately crying and jumping up and cheering. It’s what he unknowingly embraced when he chose his very difficult career. I’m a doctor too, but one who doesn’t have to exert much effort to lay claim to humility. Lots of people I’ve treated have properly felt anger, sadness, disappointment, and contempt for my work. I was that feckless resident. The good things I’m accomplishing at the end of my career don’t add up to a hill of beans compared to Paul Kalanithi before he even qualified. Not to mention decades of my own arrogance and greed. But my bad performance is mine. I don’t arrogate it, or any of the good I ever imagined myself doing, from something mystical that has been encouraged in society’s imagination.

That imagination continues to see my profession with all its institutions and technology as something to be revered and to tiptoe and whisper in the presence of. It’s not just American. I also see it in an emergency room in Vancouver. Patients there often seem to cast themselves in a real-life version of a movie the final scene of which offers the hospital, doctors, nurses, and masses of incomprehensible machinery as the last rite of passage. But I think this is worse in the United States. Even Paul Kalanithi was rushed to the emergency room and admitted to an intensive care unit on the day he died. Filled with cancer and obviously near death, experts and family were still debating whether comfort care would be appropriate. This, I’m happy to say, would not normally happen where I live.

I also count it a minor shame that that this brilliant polymath young man’s moving book is received as well as it has been partly because of a mystique of medical omnipotence.

Why do I feel this way? It’s got to look as I say like envy. It is, but not entirely. I want medical doctors to be astute, precise, and to struggle mightily to master the necessary skills. But I want us to find our greatest satisfaction from convincing people in terrible situations that somebody who could congratulate himself just for doing a good technical job is also working hard to share their pain. And to find ways for them to stay home at the end and do better in their minds and hearts than default to a chilly falsehood.

I like to think Paul Kalanithi would have agreed. Wonderful book, nearly-unique situation including the skill and determination to write it. 9.4/8.7

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Healthcare Mismanagement

April 2017

I’ve been working in Canadian primary health care now for almost 40 years, and it seems to me that while in many ways we’re making progress, in others we keep making the same mistakes.

At the moment our homecare of the frail elderly program is threatened because of administrators’ perception that it is not delivering return on investment, a legitimate business term being used in a completely un-businesslike setting. I should be clear the I say this speculatively because it’s impossible to find out how much of a threat we are under, what kind of changes are proposed or being considered, whether tuning up the cost or the productivity side of the equation would improve things, and how accurate or reasonable the numbers administrators base their decisions on are.

A friend and colleague in the Midwest USA has recently sold a company he started based on principles similar to our homecare of the frail elderly program to a huge US health insurer for dozens of millions of dollars. US dollars. The idea that being available for frail patients 24 hours a day, seeing them at home, forming a relationship of trust with them, having a care plan conversation, and showing up when they are in crisis saves money seems to me founded in common sense. To say nothing of its being better care. Famously venal and hardhearted American business interests get the message, whereas our supposedly kindly and open-handed Canadian managers don’t.

So let me generalize about healthcare management from my experience.

The rare really capable healthcare managers I’ve worked with have an instinct for good clinical work. They form personal trusting relationships with the best clinical people, and include them in brainstorming and planning. When they encounter lazy or incompetent clinical people, they get rid of them. There arise out of this programs that work for everybody.

Sadly more often I see healthcare managers who default to an adversarial attitude with clinical people, presuming like industrial revolution overseers that we are lazy and will minimize work unless kept under threat of sanctions and always being made to feel we aren’t quite doing enough. Out of this kind of thing arise programs fraught with labour-management conflict, dissatisfied clinical people, and blunted outcomes.

These less effective managers substitute numbers for accurate instinct about what works for clinical people but more importantly for patients. Statistics. These are famous for being crystalline and unarguable, but are well known among anyone who has spent any time with them for being plastic and for serving any interest through sophisticated selection.

So it is at the moment with our homecare of the elderly program. An administrator recently emailed me about a related program in the emergency room that the physicians were only 50% effective at identifying and paying attention to proposed family practice admissions. And this, she told me, represented an “opportunity”. My physicians in that program are absolutely 100% effective at identifying those patients and discharging them back to the community if at all possible. The administrator involved has never spent a day shadowing the doctors she is evaluating, and teeters between listening to capable clinical people and making decisions based on numbers that don’t make any sense.

Decisions here, it seems, are based on whichever ill-defined buzzword is turning heads in administrative circles. At the moment it’s called “medical home”. To the extent that there is a definition of that, I can say with confidence that the only program meeting that definition in this city is our homecare of frailty program. But that doesn’t matter. It will be months before I become aware of whatever latest buzz now interests local administration, by which time our program could be gutted and scattered.

It’s enough to make a Canadian long for the economic realities of healthcare south of the border. For all its abuses and expense, at least decision-making eyes are reliably fixed on the bottom line, and where, as we have in home care of frailty, a program can improve care and at the same time save money, American business jumps onboard and buys it. Here we strangle its resources, constrained only by yearly budgets and preferring appearance to both economic and clinical reality.

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A Fool and His Money

I work with a multidisciplinary emergency room team that tries to stop unnecessary hospital admission of frail old people. Again and again at the busy Vancouver General emerg family doctors who go on holiday without replacement, won’t make house calls, or whose office phone number prompts a recorded “go to the nearest emergency room” outside office hours are a reason frail people turn up there and end up admitted, for no good reason.

Nobody can blame our hard-working capable emergency room docs for wanting to admit a confused poorly-mobile old man who turns up in the middle of the night dehydrated, urine full of pus, suddenly unable to get to the bathroom. Typically how he was functioning and how confused he was before this recent change, how much help he was getting at home, and whether his family doctor is involved in his care at all just aren’t accessible and a “short admission to sort things out” seems the only safe option. But getting that sort of person back out of the hospital too often turns into a multi-month-long nightmare. An expensive and dangerous real-life nightmare.

The General Practice Services Committee (GPSC) in BC has for many years now tried to reward “full-service” family practice through dozens of fee items for primary care of patients with lots of chronic conditions, mental health problems, and frailty. In particular it pays hundreds of dollars for each “attachment”, which means taking on a difficult new patient and being responsible for their care.

You’d think this kind of incentive would result in cost-saving as well as better care as “full-service” doctors get rewarded for avoiding expensive futile hospitalization, referrals, over-investigation, and over-prescribing. Interestingly, a recent paper by UBC epidemiology researchers suggests maybe not.

Looking only at the incentive payment for patients with two or more chronic conditions, researchers found no change in primary care access or continuity, and an increase in hospital admission associated with the extra $240 million paid to doctors for billing these incentives between 2007 and 2013. The authors commented “policy-makers should consider other strategies to improve care of this patient population”.

You think?

Wondering why the incentives weren’t working and what strategies might be more effective, I emailed the Medical Services Plan (MSP) to ask whether “full-service” primary care includes availability of a physician 24 hours a day and seven days a week.

It doesn’t. MSP told me, “There are no specific requirements attached to these GPSC fees with regard to out-of-office hours coverage” and referred me to the GPSC for further information. Vancouver Coastal Health recently looked at the proportion of Vancouver family physicians who provide 24-hour coverage and it was around 40%. I spoke to an associate registrar at the BC College of Physicians and Surgeons who was unhappy about this since the College practice guidelines mandate 24-hour physician availability. He commented the College isn’t in a position to do much because they only find out about off-hours vacancy if there is a complaint about a doctor.

I’ve had lots of conversations with colleagues who have no problem directing patients to emerg outside office hours and who bill GPSC incentives on every patient who qualifies. And I see first-hand in the ER how many unnecessary expensive hospital admissions of frail people happen because the patient and their family can’t get ahold of anyone on call for their GP at night.  Would we give better care and save more money if we offered elderly patients in crisis a primary care community alternative to the emergency room?

Damn straight, in my opinion.

I’m getting old myself, pushing 70. When I started practice 40 years ago unpaid 24-hour coverage was simply assumed. In 1980 a self-respecting city family physician would no sooner leave a patient without a doctor to call at night than ignore a breast lump or tell a 50-year-old with chest pain to take an Advil. But today’s practitioner (quite properly I think) expects not to be bothered during time off, or at least to be paid for being exposed to urgent calls in the middle of the night. I believe we are dreaming if we think we can return family practice to the dinosaur model of care I grew up with.

Maybe there is another, better way. Money on the order of dozens of millions per year paid to doctors for taking on care of difficult complicated people if “care” just means putting the patient’s name on a practice roster could be redirected. Willing capable family doctors could be paid to take night and weekend call, given access to EMR of practices being covered, report contact to the patient’s family physician, and still be rewarded fee-for-service for home visits, with some of that money.

I’ll see if the GPSC will talk to me about trying to get a bit better bang for their buck.

 

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Policy and People

I ran across a recent review in the New Yorker by Canadian journalist Malcolm Gladwell, commenting on The Death of Cancer, a book by Dr. Vincent DeVita. Dr. DeVita is a leading cancer specialist in the United States who has developed groundbreaking chemotherapy regimens which are still in use. This very influential physician advocates in his book one side of a difficult controversy that we see all the time in healthcare: should we insist on treating patients according to guidelines based in best-quality research studies, or should we encourage physicians to be “creative” and use intuitively reasonable but unproven treatment strategies?

In some ways this controversy is an example of a more abstract question: should we be focusing in healthcare on the individual patient, or on a population of which the patient is presumed to be a member? In my practice caring for frail elderly people at home I find, because my patients never seem to fit into labelled-box categories, I nearly always end up favouring the “individual” side of that question. As far as insisting on guidelines versus trying out unproven treatments is concerned, I am forced almost daily to be creative about what kind of treatment I offer my frail elderly patients.

I think though that it’s easier to make a case for that kind of practice with someone in their 90s, an example of the famous heterogeneity principle in geriatrics. Not only does this old person not not quite fit the definition of any study population, he or she is pretty much completely unique, and often needs a unique solution to a unique problem. But what about 30-year-olds with HIV, 40-year-olds with breast cancer, or 60-year-olds with heart attacks? They are much more like the others in their group and likelier to benefit from a treatment that has been proven to be effective in big studies of very similar people. And of course “borderline” situations exist. An 80-year-old with new heart disease who drives a car, runs a business, and has never been sick a day in her life, or an eccentric young cancer patient whose beliefs preclude standard care? What about them?

My solution has turned by default to giving my patients a choice. Many of them have to delegate that choice to a substituted decision-maker, but it’s still the patient’s (not my) choice to make. Once I take the time to let them know the potential risks and benefits of guidelines-based care versus some once-off treatment I believe might help (and if I’m careful not to spin the information I provide) each patient can think over the options in their own circumstance and with their own biases and preferences.

This could be a way out of the dilemma Dr. DeVita discusses. Evidence-based care, clinical guidelines and hospital policies and procedures need to be recognized and treated as suggestions, not tyrannical laws of practice. It is after all the patient who suffers or enjoys the real consequences of what we do and don’t do, not me, my reputation, an institution I work for, or a regulatory health authority.

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Type-Casting

A few weeks ago our team, normally focusing in the emergency room on avoiding unnecessary hospital admission in over-70s, was asked to see a 45-year-old lady who had come to the ER for the second time in four days. The first time, she was sent home because she didn’t seem to have anything wrong. “I don’t feel right. I know something’s the matter but I can’t say what it is.” Physical exam, chest x-ray, laboratory workup: all negative. She was upset, crying, and complaining that nobody seemed to care.

This person looked to everyone like a classic attention-seeker. She was blind from oxygen poisoning as a baby, overweight, and had arthritis that made getting around difficult. She lived all alone in a small apartment. The doctor who saw her on that first visit felt sorry for her but knew that the ER was not going to solve her emotional and social problems.

Two days later she came back, this time she’d fallen and hit her elbow and knees on the concrete floor. X-rays were normal, she was offered pain medication, and told, again, Go home.  And be careful. But she wasn’t satisfied so she wouldn’t leave. By morning when we assessed her a social worker told us that as far as she could tell there was no social problem. The lady worked at a job, had enough money, didn’t drink or do drugs, had friends, and had been doing just fine in her apartment until about 5 days ago. I wondered if maybe her cat had died. We went to see her thinking we’d try to set up some counselling and connect her with a family physician. Anything to get her out of emerg.

It turned out she already had a family doctor, a young female. When I called her she told me it was important to make sure there was nothing seriously wrong with her patient. I mentally rolled my eyes because I didn’t think I needed schooling by some junior doctor, plus this patient had had not one but two capable medical physical examinations and relevant x-rays and tests in the space of three days. The previous night’s emergency specialist’s examination was legibly documented and completely normal. I had it fixed in my mind that we were dealing with a socially disabled chronic complainer and my job was clear: get her out of here. I asked the family doctor if there had been a referral to a psychiatrist or mental health team, but she couldn’t understand why we would be suggesting that. The lady was cheerful, bubbly, functioning just fine.

I was scratching my head walking away from the phone when our very astute physiotherapist asked if I would check this blind lady’s neurological exam. The physio had been trying to make sure the patient could walk safely before sending her home. He had me watch as she held her arms out straight, and the right arm drifted down to about 45°. We both knew this meant she had trouble locating her body in space, which gets really obvious when normal patients close their eyes, but of course this person couldn’t see her arms anyway.

I did two or three quick tests of function of the cerebellum, the part of the brain that looks after perception and adjustment of body position, and there was no question something was very wrong on one side.

Twenty minutes later we had our answer: a CT scan showed a medium-sized clot of blood in the cerebellum: a hemorrhagic stroke. Going back and asking her if she had any trouble grasping things she said yes, and it had been going on for exactly 5 days. Plans to send her home were cancelled and she was admitted and seen by a neurologist.

What happened here, and why is it worth posting so you can read about it? We in healthcare depend more than we sometimes know on educated instinct. It doesn’t take a doctor or nurse very many years to learn that most people represent a “type”: go-getter, cautious conservative, minimizer of symptoms, chronic complainer, bundle of nerves. The problem is that we default to these types in our mind, and it can be hard to avoid concluding that what we are seeing is just at-expectation for this type of person.

So a blind, fat, funny-looking middle-aged spinster lady crying and complaining with, apparently, nothing wrong except her sad chronic social troubles doesn’t get taken as seriously as a married, athletic, articulate male accountant of the same age with the same vague complaints. I thought I knew what was going on before I even saw her.

This isn’t sexism, either. The very smart young female ER specialist who saw this patient four days after her cerebellar bleed wrote on the chart “no lateralizing findings” (this means she says she did a neurological examination and found nothing). She must have decided to document the negative finding “for completeness”. There wouldn’t have been any doubt in her mind either what type of person she was dealing with.

What type are you? It may not be easy to see yourself as others see you but beware. Modern healthcare’s microscope is supposed to be gauging with precise objectivity what’s wrong with you and what you need, but your perfectly innocent personal characteristics might be messing with the focus.

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WHEN NOTHING WORKS

Working in a big emergency room as part of a team that tries to intercept unnecessary hospital admissions of frail elderly people, I seem to find there are fewer elderly people who call an ambulance themselves and are brought to the emergency room, than elderly people who turn up because somebody else thinks they should be there. That somebody may be their family, but increasingly in my experience it’s their family doctor.

An 88-year-old lady whom the emergency room physician wanted to admit to the family practice unit to “sort things out” had come to the hospital because of trouble breathing, but she didn’t seem to have much wrong with her on paper. Her daughter, who had left to go to work, explained that her family doctor had sent her in to see the specialists and have some more tests. The elderly lady had trouble getting around at home and was a little bit confused, but since coming to the emergency room her blood tests, chest x-ray, blood oxygen saturation, and physical findings weren’t bad enough to explain her complaint that she couldn’t get her breath and the fact that she was breathing relatively quickly.

I wanted to find out if she still had a normal blood oxygen when she exerted herself, and so with the help of a physiotherapist I sat her up in bed, had her stand up and grip onto a 4-wheeled walker, and took her on a little stroll out into the emergency back-ward hallway. She did surprisingly well.

When she got back to her bed area, I sat her in a chair and chatted with her. The fast breathing had settled down, and she said she felt a bit better. “Nobody has ever talked to me about my breathing trouble before”, she said. “It seems strange to say, but I feel less worried about it now that I know nothing more can be done to improve it. And I didn’t understand that if I came into the hospital I might get worse instead of better.”

This lady’s family doctor had sent her to the hospital because several months of investigation of her heart and lungs, including evaluation by specialists and trials of multiple medications, had not turned up a cause for her distress. Having spent many years in a family practice office, I understood the doctor’s problem: the prescription his patient needed was not available in any pharmacy. It consisted of helping her to understand that her expectation, which included (without her really knowing it) being healthy and feeling like a fifty-year-old again, wasn’t ever going to be met. It would have taken the doctor a lot more time than he could spend on an office appointment, and some personal moral weight-lifting, to explain to his patient and admit to himself that there wasn’t much he could do.

I don’t blame the family doctor or the emergency room specialist. These two capable kindly people were working hard to get their jobs done well. The family physician was practicing evidence-based preventive care for his patients, and the emergency room doctor was trying to assure the safety of all the worried, sick, and injured people who came to the hospital looking for help.

And I’m not suggesting that all difficult clinical problems can be solved by a few minutes of good honest truth-telling. But once we’ve done everything we can to help someone and it’s completely clear that no amount of doctoring or medicine will be effective, we need to get over our reluctance to use one of our oldest and best treatments: benign and kindly sharing of the burden of inevitability.

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Final Adventure of the Geriatric Doctor-In-Law (6)

You can follow the string of my “Geriatric Doctor-In-Law” stories by searching through the posts here. Basically my wife Robin’s mum Liz and dad Nigel became quite frail over the last several years, at roughly the same time, with all sorts of health, psychological, and general care problems. I was quite used to these as a doctor but I had almost no experience dealing with them as a family member. What a difference being on the other side of the fence. At times on both sides of the fence.

Well, since my last post about a trial of therapy for Liz, both Robin’s parents have died, with only a few months of time passing between the ends of their lives. First, Liz, and then Nigel. And I think it’s fair to say that they both died “well”. Symptoms were controlled, no unnecessary or futile investigation or treatment occurred, and their wishes were respected.

So did I learn anything from these Adventures that I didn’t already know?

1. Even as an experienced health professional with decades of caring for elderly people one has absolutely no conception of what it feels like to experience frailty, that stage of life to which there is no successor, with one’s own folks. I think of Gawande’s recent book Being Mortal, in which a brilliant and very successful physician admits that in caring for his dying father he had no idea what to do.

2. As a caregiver and “advocate” you will really have to insist on all sorts of things that run counter to prevailing ideas in “the system” and to traditional healthcare practice. Staying at home. Not going to the hospital when you get sick. Opting for comfort over rescue. And the strange thing of course is that I’ve been talking about all those things for a very long time (and so has “the system”) but I had no idea how difficult they can be to accomplish, especially if it puts you in conflict with family members and formerly trusted professional health advisors.

3. Caring for people at home as opposed to residential care (nursing home) is expensive. But it’s cheaper than continuing with futile-intervention care involving specialist referrals, guidelines-driven investigations, preventive treatment, and being in and out of hospital. Cheaper, and also better. But be careful: if you live where healthcare is publicly-funded home care is cheaper for the system, not necessarily – actually very rarely – for you. So it’s just better.

4. Dementia, with its progressive memory loss and personality and behaviour quirks really changes people. My demented father-in-law not only could’t walk or clean himself after going to to the toilet, he was a completely different man. Angry, at times withdrawn, and with no insight. Whereas before he was the soul of equanimity, the life of the party even when there was no party, and brilliantly intuitive. These differences are permanent, and they have a huge effect on relationships.

5. It must be much more difficult than I ever imagined to be a caregiver or responsible one for an old person descending into frailty, when you aren’t a health professional, you’re unfamiliar with the system, you don’t have much money, you can’t avoid getting tied up in conflict with family members, and you have to sort out differing advice from doctors and everybody else. We were lucky. Nearly everybody facing caring for frailty is in a much less favoured situation.

I’m more convinced than ever that we’ve got to make the current popularity of “patient-centered” care more than just administrative-language window-dressing. It’s going to take a lot of determination to do that once the preoccupation of system decision-makers moves on to the next buzz idea. So far it’s mostly talk. I still see, every working day, too many people whose time is short and to whom nobody is listening.

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Dr. Sloan on local radio, again.

CKNW radio reporter Jessica Gares interviewed me a few months ago. You can hear the content here.

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Lost Sheep

Well it’s Christmas. And I the sorry lapsed and sentimental secular Christian can’t resist childhood-retrospective feelings. But although I know the suicide rate probably doesn’t really increase much at Christmas, still from my adolescence I am no stranger to Christmas alienation. It’s just an emotionally loaded time when long-past sensitivities crowd life’s center stage.

Along with the observant, we who went to Sunday school might remember a counter-intuitive story Jesus told about a shepherd who left a hundred sheep to the ravages of the night to go find the one who had wandered away. The shepherd tracks down the little lamb and brings her home over his shoulders, and everybody celebrates. Nothing is mentioned about how many of the other sheep temporarily left on their own got grabbed by wolves. Plus what’s this nice smiling boy carrying the little sheep back for? At least some of the people celebrating must have been thinking about her curried or roasted pink.

Never mind. In our benighted contemporary world primary healthcare of frailty tries to gather a similar flock at large in the community and create a virtual fold that protects them from predators, most of whom in this flipped-over virtual parable wait quietly texting on their phones in the hospital cafeteria. And like wild carnivores these specialist doctors are very good at what they do and (seen in the “appropriate” light) could be… cuddly. They are friends of mine. Their hearts beat softly just like any lamb and they snuggle their cubs when they go home at night.

But we feral housecall doctors in our virtual fold community programs are not-yet proven to be what all lost frail homebound lambs need. That’s going to take another year or five. In the meantime, every afternoon there is still a load of busted-up mutton arriving by ambulance at everybody’s emergency room. God protect me from an offensive metaphor: these are real people who will be you and I a decade or four down the freeway: confused, frightened and hurting everywhere with no place else to go for help.

Vancouver Coastal Health in its inimitable way of doing business has first: understood the need including the fiscal one, second: legislated a superficially sensible solution, third: failed to understand the clinical and even administrative detail, fourth: somehow persisted and made it work.

So: I am now part of a team that crouches in the middle of the biggest emergency department in our province and identifies and tries to intercept elderly people who have come to the hospital and who clearly have no reason to be admitted. These frail ones in the traditional process would have been whisked to the family practice or internal medicine floors because what else were we to do with a 90-year-old who is confused, can’t walk, is in pain, and has no capable caregiver or family doctor? Another statistical bed-blocker but much worse, somebody deprived of his or her home and trapped in a technical machine that only makes problems worse.

Instead of that ridiculous and wasteful nightmare, we in our new program try to find a way safely to send these wonderful frail people back home.

Our team consists of a “clinical management leader” (an experienced capable nurse), the “transitional services team”, a couple of equally capable registered nurses who can figure out in a twinkling what services a patient has been set up for in the community and judge what needs to be added, a “quick response team”: savvy and heads-up nurses and occupational therapist who can go out within an hour or two and see an elderly person at home, and (now), a team of family physicians who support the in-emergency group and after-discharge quick response team to keep old people with troubled caregivers, chronic pain, collapsing home services, and a dozen other nightmares that the hospital will only make worse, OUT of the hospital, and safe at home.

We doctors are going to be available 24 hours a day by phone for elderly patients and caregivers who have come to the hospital in crisis but who don’t really have the kind of crisis the hospital can help with, and head back home to deal with it there.

This is one solution for ignored homebound old folks with plenty of problems and no adequately-functioning family physician (I guesstimate there are 1000 or so of these patients in our city of 600,000). They will always suddenly need help when their caregiver burns out with her alcoholism and old personal conflicts with dad, the kindly helping neighbour falls and can’t get to the store anymore, or the granddaughter gets a job in Winnipeg. But I wonder if our emergency-room program is a bit more downstream than it needs to be.

My faithful readers won’t have any trouble guessing what I think the real solution to crisis in frailty ought to be. It’s all very well to prevent the bathroom from flooding by trying to empty the overflowing bathtub with a plastic measuring cup. But how much easier and more effective it would be just to turn off the tap!

Our HomeViVE primary care of the elderly program and others like it does its best to prevent the strange and terribly human disaster as troubled elderly people stuck in their homes have no alternative but to push the 911 panic button when things fall apart. Our patients have had a conversation with us including How do you want to live the rest of your life? What are you are most afraid of? And What do you really hope for at the end of your life?

In the relationship that having that conversation (plus being available 24 hours a day and seven days a week) encourages we think we develop trust that lets older people get off the dangerous and wasteful “we-can-cure-you” hospital critical care merry-go-round, and start dealing with their real priorities in the last weeks and months of their lives.

The Christmas will come when we won’t need to go rescuing lost sheep from the emergency room and the hospital. We will give the gifts they tell us they want, usually in the relative comfort and safety of the place where they properly live.

Even though we are talking here about people, who unlike sheep know perfectly well where they are eventually headed.

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Bringing Family Practice Training Up to Date

I’m very lucky to be part of several groups of committed and capable family physicians doing care of the frail elderly. One of these is our (University of British Columbia) Family Practice community geriatrics program, led by my colleague and good friend Margaret McGregor.

About a year ago Margaret decided to produce an opinion article in the Canadian Family Physician journal, arguing that training in care of the frail elderly should be as mandatory for family practice residents as is pediatrics, surgery, and psychiatry. This given the fact that almost every one of these graduating family physicians will be faced with issues like dementia and falls, and the challenge of reinterpreting standard medical guidelines so that they make sense in the lives of unique frail elderly people.

I completely agree with all this, and it must be one of the percs of having been around long enough to be practically a frail elder myself that Margaret kindly tacked my name onto authorship of this wonderful article.  The fact is she wrote the whole thing herself and so deserves pretty well 100% of the credit.

Take a look at what she has to say at http://www.cfp.ca/content/60/8/697.full

Amen!

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Airline-Industry Healthcare

Such outrage about awful healthcare! Too many mistakes, too many adverse drug reactions, hospitals making people sick, accidents in the operating room, arrogant doctors, costs going through the roof. What’s the matter? Everyone wants answers.

Why, when competitive business and even publicly-administered enterprises like airports and air traffic control are achieving near-perfect records of safety and economic performance is our healthcare so dismally bad? It’s not like we’re complaining about the dirty hallway floor or nurses not attending to us immediately when they’re called, we are talking danger here: people are dying!

How come? Many critics conclude it’s a lack of order and a failure of trust. There are big messy differences across regions and practitioners in operation performance, complication rates, and mortality. Doctors just decide what to do without reference to authority or science. But, these critics believe, all this is brought on by doctors and other healthcare people we have learned to believe in over half a century who are now apparently abusing our confidence.

What should we do? When in response to critical outrage our reasonable business-trained administrators (responsible for what kind of health care we pay for) look around for a model for success, they properly focus on air-traffic, airports, and the airline industry. It has succeeded through science and technology at making air travel unbelievably safe, by imposing consistency.

Why don’t planes crash? Because absolutely every tiny detail of the machine and everything anybody ever does from check-in to disembarkment is monitored, checked and rechecked, and meticulously documented. The margin of error gets squeezed down very close to zero. So why couldn’t we get rid of nearly all the horrible mistakes maverick arrogant doctors make by just forcing them in the same way to do their job exactly correctly, every single time?

In hopes of getting rid of at least some of our health care disasters, we have started to practice healthcare quality control through a similar surveillance of detail and enforcement of consistency of process. Whereas in the old days surgeons had ships’ captains’ control of the operating room (and when they made mistakes everybody looked the other way), now operations proceed according to protocol which is strictly enforced. Drug treatment is studied and the latest and best evidence gathered to produce prescribing guidelines from which there shouldn’t be any variation.

And all this has a hard paper trail so when things don’t work out, the personal injury industry can fix blame and impose punishment. Mandatory documentary consistency and legibility and our fear of random mistakes has led to health records that look increasingly like checkbox forms. And that’s okay, we think, because we believe that as long as we can successfully impose consistency, results will also be consistent.

I just came back from a meeting of nurses, doctors, and rehabilitation professionals trying to organize a protocol for safely returning frail elderly people who have come to the emergency room, back to their homes, once it’s clear that they have no serious problem that requires hospital admission. We looked at eight separate existing printed evaluation forms that are used in the emergency room, all of them with dozens of checkboxes, some with almost a hundred. Practically nowhere was there any space for written comments, concerns, or summary of evaluation. The forms, it seemed to be assumed, would (once correctly filled out) lead to proper procedures which would lead to best possible outcomes.

Our meeting group spent quite a bit of time trying to cut back redundancy in these forms, but there lingered over the meeting an unstated worry that the process we were trying to create and streamline might not be the best way to come up with a useful picture of an old person’s life that could get them safely out of the hospital and back home to their family.

I left the meeting wondering whether we are on some wrong track in trying to perfect our health care through exhaustive checklists as if it resembled making sure a plane doesn’t crash. A person is not an airplane, a hospital is not an airport and a surgical operation is not a takeoff or landing. You can nearly perfect a process that involves close-to-identical machines and procedures. But to try to perfect a world involving human patients and health providers has to be a little more difficult, doesn’t it? I thought to myself.

And worse, are we sending a clear though unspoken message to our health professional students that once they check every single box on the form, and are exhaustive and meticulous with all the detail they have discharged their responsibility to their patients? If so (and I see that kind of practice around me in hospitals) what a terrifying prospect to confront if you ever get sick and need help.

Of course the “outcomes” (crash? no crash?) in healthcare are infinitely less cut and dried than whether there is an air accident or not. Patients are never perfect. When we measure re-admissions, postoperative infections, return to pre-illness function, or even death, it’s still pretty hard to know whether someone would go back to the hospital again if they had the same problem, have the operation again given the choice, or try a drug treatment a second time knowing how the side effects really feel to them. Hard, in other words, to quantify and factor in the human element in balancing and understanding choice.

I wonder if a better way to fix health care is to return to valuing carefully thought-through problem-solving by experienced health professionals who balance science and evidence with clinical and human instincts. And who make sure they get vitally connected with the people looking for their advice, then tell those people what’s on their mind, ask them what they think, and listen to the answers.

Doctors and nurses have betrayed an old-fashioned trust, but we did it with some able assistance. In trying to clean up our procedures we and our administrative colleagues have washed the baby out with the dirty bathwater.

Anyone who reads posts on this blog will be wondering how many ways I can find to keep saying the same thing. They are correct of course. But I insist it is way past time to refocus on relationships, admit that we will always make mistakes, and that sometimes we will see our patients suffer even when we do our job close to perfectly. I think we should be very clear to ourselves, one another, and the people who depend on us that our decisions and opinions, whether they come from procedural guidelines, our instinct, or both, are tentative. And while we’re at it we should get a lot better at writing out our thinking process in the record in our own original honest language. Legibly.

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Another Jailbreak!

GM “Gord” is 87. He is a proud and accomplished man who was born in the 1920s in small-town Saskatchewan with birth injury to his arms and legs. As a child he could walk and move his arms but wasn’t half as physically capable as other boys his age, and as he describes it “I had to adapt”. In the 1930s he had a paper route, avoided or outsmarted bullies in grade school, and eventually found office work. Later he married briefly, but today lives on his own in a very nice subsidized apartment in Vancouver’s West End.

This brave man refused investigation of medical problems that suggested he might have cancer (“If it’s cancer, it’s cancer. I’ll take the lumps.”), and told our occupational therapist he didn’t need any help in spite of falling every couple of months and gradually losing the use of his arms. I explained to him many times what a cancer death would be like, and estimated his chances of a cure with investigation. He was not interested. He also didn’t want to be in the hospital, having been there before.

About a week ago he fell, and somehow his legs were tangled in a way that scared him, and so when he pressed his Lifeline button and the paramedics came no doubt expecting to lift him back into his chair as usual, he agreed to be taken in to the emergency room and evaluated, worried that something might be broken.

The hospital doctors told me that he had said he thought he needed more help, he couldn’t cope, and that he wanted to be investigated, but he denies saying any of these things. In any case a medical student telephoned me while Gord was still in the emergency room and enumerated his anemia, digestive symptoms, general weakness, and frequent falls. I explained to the doctor trainee that this man had very clear in not wanting to be investigated, not wanting to be given extra help he didn’t need, and not wanting to be in the hospital.

Still, they admitted him to internal medicine. They investigated his diarrhea and anemia (I had already evaluated them), and the social worker, occupational therapist, physiotherapist, and geriatric team were consulted. I got a call from another medical student working with the medicine service, provided him with the same information, and heard about their plans for evaluating his medical problems, determining what his needs were, and straightening out his future life. I heard nothing further for five days.

Yesterday I went into the hospital to see how things were going. Gord was thin and pale lying on a bed, and recognizing me immediately asked if I could get him out of there. I asked him how he was doing and he said “bad”. He looked around to make sure nobody was listening and then said, “I’ve been in bed for nearly a week and every day I get weaker. They won’t give me anything for diarrhea, I have these diapers on like a child, nobody helps me to get up or walks me anywhere, and they keep coming up to me and shaking their heads.”

It wasn’t easy to find the doctors caring for him. Nobody knew the name of the resident and the attending physician wasn’t available. I found the physiotherapist, but she couldn’t get ahold of her occupational therapy colleague on the phone. Eventually we went in and tried to get Gord to stand up and walk, which he managed although fearfully and stooped over. Then the occupational therapist arrived. The plan was to do an evaluation of his safety at home in about four days, she said.

May I be forgiven, at this point I lost it a bit and told the occupational therapist that at the rate he was losing function, by Friday he would be completely bedbound. Fortunately, she was kind and tolerant and (when I apologized) explained on my behalf (to me) that I was just advocating for my patient. Although I appreciated this, something was lost in the translation.

Eventually we negotiated that our home care program occupational therapist would see Gord at home the next day, and that if he could function “safely”, they would discharge him.

Today, I turned up at Gord’s apartment just as his hospital transfer vehicle arrived. He looked like death warmed over as they wheeled him up the elevator and into his apartment, but our OT Dave appeared punctually, and an atmosphere of optimism prevailed. Gord couldn’t sit up in bed and was awkward and dangerous getting himself into the bathroom. As I left for another appointment I was not optimistic.

About an hour later, Dave called me. “He’s fine. He got up in bed, transferred into the bathroom, and walked independently into his living room and sat down in his chair.” I was incredibly elated. Where do people like Dave find the magic? Where do people like Gord find the strength?

Gord understands nobody lives forever, but he now also understands that there isn’t a default rescue that will lead to solutions to all his problems by pushing a button on his wrist. We will try to find a way to support him as he declines, and somehow to help him out of the hospital when things go wrong and he’s inclined to push the panic button.

He thanked me for breaking him out of jail and promised to call me next time he’s tempted to risk hospital emergency room care.

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Housecalls 10: It’s Never Too Late for a Hospital Jailbreak

Mrs. N. will be 107 at the end of the year. She has lived for over 60 years in the same rented apartment, initially with her husband but for the past several decades on her own. She is an absolutely delightful English lady who is still gloriously mentally capable, and takes a “come what may” approach to life events with charming irony. She always tells me that my home visits are reassuring to her, even though we both know I’m not really giving her much “medical” care.

She doesn’t see well because of macular degeneration and walks around her apartment with a walker, sometimes unsteady on her feet. So much so in fact that a couple of months ago she had quite a bad fall, a neighbour called an ambulance, and she landed in hospital with a fracture of her right humerus, or upper arm.

Once I found out about the admission and went to see her, she looked like she had been hit with an improvised explosive device. She was black and blue all over her upper body including her face, and still in some pain in spite of enough narcotic medication to make her unusually confused. She was philosophical about the future in discussing getting her back on her feet: “I’m just feeling too lazy to make much of an effort. Let’s just leave things and see what happens.” I concluded that this injury was going to be pretty close to a terminal event for her.

Of course the hospital ward team of physio-, occupational therapist, nurses, geriatric medicine consultant, orthopedic surgeon, nutritionist, etc. all agreed that her chances of getting back on her feet (given that she needed the arm to use her walker) weren’t especially good. Never mind being unable to conceive of a person her age living all by herself. As her pain improved they began to make plans for transfer to a “transitional care” unit, to wait for nursing home placement. And Mrs. N. wasn’t complaining about that.

At least not until I pointed out to her that she faced a choice between somehow making the effort to get back on her feet, and spending whatever days she had left in a nursing home. This appeared to come as a surprise, and a week or two later the physiotherapist had noticed a big improvement in her mobility. She was sitting up in bed independently, standing with a two-person assist, and taking steps. When I walked her myself the main problem was pain in the right arm. I asked her whether she would like our home care team to try to get her back to her apartment and she said, “Absolutely doctor. I can’t imagine where else I would go…”

At this point our home care physiotherapist and my family practice resident attended a planning meeting on the ward, and it was clear there were two different opinions about what was possible and what was preferable. The hospital team focused on their concept of safety (which consisted in avoiding another fall that could only be accomplished with supervision in an institution), and our team was thinking and talking about what the lady herself wanted, as long as she understood the risk. About 10 days later we had come up with a clear if complex plan for increased home support, daily physiotherapy or rehabilitation assistance, supervised mobility, and good pain control with medication, all at her home.

In the meantime she had been moved to the “transitional care” unit, and the good news was a couple of weeks later the new care team there agreed to a trial of discharge home. But I got a phone call on a Thursday that she was being sent home by ambulance the next day. Friday. I got on the phone to the ward physician, an old friend, and suggested to him that discharging an unsteady blind 106-year-old home on a Friday afternoon was a recipe for a Saturday morning with the wrong medications, no assistance through misunderstood home support arrangements, no rehabilitation availability for two days, nobody available to put things right, and Mrs. N. back in the emergency department by Saturday afternoon. “She’s not acute anymore. We need the bed,” the ward administrative nurse had told me. But fortunately my colleague understood and Mrs. N’s discharge was delayed by three days.

I’ve seen her three times since then, and our physiotherapist has done a masterful job of getting her back on her feet, first with supervision. A couple of days ago when I rang her apartment buzzer, she promptly popped the front door open, and surprised my resident and me by physically answering the apartment door with her walker, returning to her chesterfield safely and independently, and then telling us a couple of entertaining stories that convinced me that her former vigour and sense of humour and completely returned. Her pain is controlled now with just a bit of Tylenol.

This dear lady won’t live forever of course, but everybody in our home care service is delighted and proud that whatever time she has left will be spent independently, where she wants to be, and living life as she chooses within her limitations. The alternative which would have rolled out and is the usual consequence for very old frail people in crisis would have been a huge and disturbing change in her life circumstances, and many of the months remaining to her spent getting used to a nursing home with its constraints of routine, indignities, and cookbook preventive medical care. We are more determined than ever to keep her away from the doors of the emergency room from now on.

I know there is no need to mention how much less our 24-hour relationship-based home-visit trust-engendering care costs.

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Robert Munsch and Putting Sentimentality to Work

Munsch was popular when my kids were young and I read them his books. It’s just been announced that the original illustrations from Love You Forever are about to go on sale, and I’m reminded of my inescapable emotional response to that story. Lots of people felt the same way, but I like to think I had more of an excuse than some because the message is the one I made heavy weather of in my own book A Bitter Pill. Here’s what I said at the end of the last chapter, about caregiving:

When my kids were little, I would from time to time read them Love You Forever, by Robert Munsch. The story is of a young woman who has a child, cares for him, and sees her baby grow up to be a man. All through the years she repeats to her boy, “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” The young woman gets older, and then becomes fragile. And toward the end of the story it’s the son who cares for his mother and repeats exactly the same reassurance his mother used to give him. I was never able to finish that story without tears in my eyes, which I’m sure left my own children wondering what was the matter with Dad.

That sentiment is the one that makes caring for old people work. And no matter how difficult or conflicted the caregiving-contract conversation, in the end the old person, now helpless, relies on our honoring the very old and fundamentally human obligation that’s implied by our having grown up and been cared for.

So caregiving isn’t a scientific or technical creature. When things are awkward and we need to know how we’re doing, there really isn’t a scientific answer to the question. Difficult as it may seem when we’re used to trusting scientific thinking, how something feels is the most reliable measure of success at this enterprise. This operates in simple ways (I’m hot, I’m cold, I’m wet, I’m scared, I’m happy) or more complicated ones (you give me confidence, I don’t trust him, I need to be left alone, I think I finally understand).

Trust the expression you see on the face, not the blood pressure. Trust your intuition, not your calculation. Think about what you’re doing, but in the end, trust your heart, not your mind.

Your responsibility to an old person will end, probably sooner rather than later, but how you feel about what you did and didn’t do will last a long, long time.

I’m not going to be spending the kind of money required to bid on those original illustrations. It wasn’t really the pictures that got to me anyway, it was the sentiment.

So here I’m retweeting my original take on what Munsch had to say. That awful fool-making love that so surprised me when my kids were born had my mum by the heartstrings too, and I was the beneficiary. She died at 50 way before I understood any of that. I help look after my in-laws, but I get another second chance to pay it back every time I see an old person at home.

Self-interest might be enough to make us boomers fix the healthcare system, but my money is on another compelling motive.

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HOUSECALLS 9: An End-Run Around the Rules.

Are there times when rules should be broken, or just ignored? This can be hard to decide, rules being rules and presumably set for everybody and for good reason. But one of rules’ limitations is that there may be exceptions. Generally for example it’s a pretty good idea to tell the truth, but there are times when it’s the most harmful thing in the world.

Here in our health region a variety of helpful programs is available, and one of these is intravenous treatment at home. This could include antibiotics, chemotherapy, and just fluid replacement. Somebody along the way has recognized that there may be situations where it’s better and safer to give substances directly into someone’s bloodstream without having that person in the hospital.

Cut to the street, I’m seeing Mrs. W. at home accompanied by a family practice resident and Mrs. W.’s son, who is a retired physician. This dear 97-year-old Chinese lady has had several infections in her leg, and on this occasion the first simple drug we gave her didn’t work, and two more wide-spectrum (and expensive) others caused her to lose her appetite and (one of them) to start vomiting. The leg infection, evidenced by a warm red swollen calf, is maybe 30% better, but a long way from being cured. The next reasonable option? Give a strong antibiotic intravenously to get a higher blood level and maybe avoid digestive side effects.

Her son has concerns. She was in the emergency room a couple of years ago and their intravenous treatment program seemed the best way to treat her at that time as well. Unfortunately, she had to go back to the hospital daily for 10 days, and each time both family members sat waiting for a couple of hours, sometimes as long as five hours.

The home intravenous program offered by the region also has some limitations. The patient has to go to the emergency room, be evaluated by an emergency room physician, wait to see an infectious disease specialist, have the intravenous medication chosen and started, if it’s deemed appropriate, and then maintain a central intravenous line and be given slow intravenous injections by home care nurses every day at home. Our very cooperative and knowledgeable medical family member wasn’t happy with this arrangement either because of the red tape and possibility of getting no treatment at all.

When I contacted our home-care program nurses, all very well known to me and fabulously practical well-informed clinicians, it was clear that as employees of the region any home intravenous injections they gave would have to be done through that same somewhat awkward policy-driven system. So what to do?

“I can give the medication myself,” said the son, who had spent his career doing just that kind of thing in an operating room. My resident and I were also willing to pitch in and help. I got ahold of a local pharmacy which dealt in intravenous supplies and medication, prescribed the drug, and requested the supplies.

Next day I got a call from the physician son that the intravenous tubes, vein catheters, and other supplies delivered were deficient. Because I’m known in the emergency room due to a part-time job I have there I was able to cadge the necessary supplies and get them out to Mrs. W’s apartment.

We are now four days into the treatment with no complications and some early improvement in the infection.

There could be questions about all this. Should a son be treating his mother? Well, he doesn’t really have his physician’s hat on. He’s functioning as a family member giving a treatment he happens to be able to administer, prescribed by me and under my supervision. Should a senior member of the medical community be flouting its safety rules (to say nothing of publishing his rash behaviour)? I’m not proud of doing that, but on the other hand if safety is the issue I think risking the delays and possible hospital admission Mrs. W. might have faced carry at least as much danger for her as giving IV medication in an unauthorized but technically correct and expert manner.

Sometimes, just once in a while, it’s in the patient’s interest for us to do the reasonable as opposed to the correct thing. I don’t have any problem with that.

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SECOND op-ed on diet hits the (Toronto) big time.

The online Globe and Mail picked up my short article on salt. Andre Picard kindly tweeted it which resulted in a near-record number of hits here on Sunshiners. As I said before I have mixed feelings about notoriety on this topic, my views running so counter to the common wisdom, but we’ll see what happens.

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Op-ed on diet hits the local media

I was surprised at having my op-ed article on dietary sugar “Sweet Nothing” promptly picked up by the Vancouver Sun.

I’m sure it will generate a fair bit of controversy recognizing as I do that anti-sugar ideology is everywhere.  Feel free to let me know what you think either in the Sun  or right here.

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House Calls 8: More on Home Support

Bearing in mind the story of Mrs. Forsyth which seems to keep repeating itself, I have been meeting for about a year now with the generous and hard-working administrative people at Vancouver Coastal Health (VCH), our local health authority. In the beginning, I was suggesting that home support workers be allowed to call the doctor (or their supervisors be required to at least try to call a doctor) in a crisis, extra home support be made available promptly for an old person in a crisis, and that as far as possible old people get help from the same familiar support workers over long periods of time.

We have decided lately to focus on preventing the “Mrs. Forsyth” admission by making an effort to contact the doctor. At least that way there is a chance to avert a hospital admission if the doctor is one of the still-pretty-rare ones available and willing to make an urgent housecall. Our latest meeting was between a VCH administrator involved in home support, a representative from one of their contract home support agencies, and myself. The meeting was productive, but I was quite surprised at how difficult it appears to be to enact this apparently simple procedural rule.  There is no clear way for VCH to include such a directive in their client files, and problems with the agency’s systems as well.

Long story short, we will meet again at the end of March and see if there has been any progress. But we have discussed a pilot project involving our home care program which could test the feasibility of direct home support-MD communication.

I don’t think I need to repeat what I’ve already said  about the potential win-win that occurs when we do better and more desired hands-on home care of old people, resulting in happier clients and also cost-saving.  But there are times when from my naïve perspective I start to wonder about a corporate process that seems to do everything in its power to speed hospital discharges but then doesn’t understand that keeping people who don’t need to be there from going to the hospital in the first place is a lot easier and much cheaper.

Reading that over, I don’t want to be misunderstood as bashing administration. There aren’t many doctors who miss a chance to insist that administrators are to blame for everything wrong with our system, but I’m not one of those.  If we don’t talk frankly, admit our biases, and believe in one another’s wanting only the best for our patients and clients, we will miss a much more important opportunity to make progress.

Thanks, VCH, for listening.

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House Calls 7: Supporting Home Support

Here’s a fictitious story of a problem with home support. Mrs. Forsyth age 92, mildly memory-impaired, under treatment for heart failure and dependent for mobility on a walker because of arthritis, was in the hospital three months ago because of an injury, and still remembers her disbelief at how hard it was to get back home. She hated the bewilderment, fear, and loss of control she felt as strange things, like being taken and put inside a machine or doctors she had never seen before visiting every day without explanation or apparent connection with anything she could understand, kept happening. She swore, told her doctor and family, and quite firmly believed and clearly understood that she literally would rather die than be admitted back into the hospital.

Mrs. Forsyth is able to maintain herself independently because twice a day home support workers come in and help her with a variety of things.

Now let’s understand that effective, desired, humane, reasonable care of frail elderly people in their homes only works using what we call in the business ADL support. This includes everything that we do for a partly-disabled old person to help her with the things she can’t do for herself. Shopping, cleaning, preparing food, laundry, medication management, even dressing, getting around her home, using a toilet, and taking a bath.

Sometimes this support is done by an adult daughter, a husband or wife, a neighbour, anybody willing takes on various tasks, and things proceed. But often and inevitably some of this work falls to paid people we call home support workers. They may work on their own, be part of a small group, or work for a large company. Home support workers take training in the necessary skills of their jobs, but they are typically not health professionals, or at least not health professionals licensed to practice where they work.

But sometimes this arrangement collides as it were with the usual events in the life of somebody elderly and frail like Mrs. Forsyth. Those include unpredictable crisis that could show up as sudden deterioration of an old person’s already-dicey daily living ability, or could look like a more obvious health problem: somebody heading for the bathroom who falls and can’t get up, wakes up short of breath, or is suddenly confused. Often it is the agency-contracted corporate-employed well-known and trusted home support worker who first discovers something is wrong.

In our situation, and this is common pretty well everywhere, the home support worker follows her employer’s guidelines and calls her supervisor at the office. That supervisor may be a nurse and may have access to some information about the elderly client in trouble, but she is also quite properly governed by guidelines set up by her employer who must do things that both assure client safety, and also that would be seen in retrospect to assure that safety. It would be rare for the information available to the supervisor to include advance directives or preferences that come from the elderly client.

And on one particular morning Mrs. Forsyth tells her home support worker who has just come in the door that she has a cough and feels a heavy tightness in her chest.

The home support worker has no choice, she calls her supervisor. Chest pain? The supervisor has no choice either. Call an ambulance. Home support worker following instructions dials 911, and six minutes later five uniformed people off a fire truck and two ambulances are in Mrs. Forsyth’s bedroom, recording electrocardiogram, sticking an intravenous line in her arm, and talking into crackling microphones while red lights project on the wall above the bed through a window from vehicles outside.

“We’re just going to zip you over to the General and get you checked out okay dear?”

“But I don’t want to go anywhere I want to stay here.”

“We understand, but we’ve been in touch with the doctor and that’s his advice. Once you’ve had an x-ray and some blood tests you’ll be back here in no time.”

Mrs. Forsyth consents, not realizing that “the doctor” is the ER physician, not her family doc. Once in emergency she is sedated, admitted from there to a medical ward, and develops over the next several days diarrhea and deepening confusion, is further medicated, relives her former hospital nightmare, and then dies.

She didn’t want to go to the hospital. Quite possibly she would’ve died of her pneumonia or heart attack had she stayed at home, but the home-care doctor and his team of nurses who have her documented advance directives and would have seen her that day and treated any infection and pain were never called. In fairness, the home support supervisor had no idea that service was even available for Mrs. Forsyth, and it is generally understood that calling a family physician for an urgent problem results in the advice to go to the emergency room anyway.

This, for a program like ours that is trying to keep frail elderly people who don’t want to be there out of the hospital, is a big problem. But I think we may be finding our way to some happier endings.

Stay tuned for the next episode.

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DIET: A New Direction

Somebody said we change jobs every five years whether we know it or not. You may be a high school math teacher for four decades but in reality you do eight fundamentally different things during that time: teach trigonometry, coach basketball, advocate for students, advance the cause of teachers, all sequentially.

I don’t think it’s that simple, but I like the idea that while we may bog down in our work, we find new significance and challenge every so often and our basic preoccupation and activity keeps changing. For some people I suppose changes could happen simultaneously so that different activities weave in and out alongside one another over time, sometimes in the foreground sometimes quietly continuing behind the scenes.

For me, alongside trying to push for better care for the elderly, I’ve been working on a distinctly out-of-mainstream approach to diet for I guess about ten years. And just several weeks ago I finished a book on the subject. Well, a manuscript (so far no publisher has signed a contract or even read the thing). But it’s been quite a long time in the making.

Out-of-mainstream? Is it ever. The main idea: “Diet has No Influence on Health“. The only bad food is food that tastes bad. An empty calorie is a calorie that doesn’t satisfy you. This apparently insanely revisionist concept is I guess consistent with my iconoclastic orientation toward science in general and health care in particular. I’ve always imagined I have a nose for what makes the grass grow greener alongside a nose for delicious food.

I had only harboured ill-defined suspicion that there was something histrionically silly about public fascination with eating our way to longevity, until about eight years ago when I ran across a very reliable review of the scientific evidence for the impact of fat modification and reduction on heart disease: zero. No impact. I celebrated quietly and decided to look carefully into several other healthy-eating ideas: salt, sugar, antioxidants, fiber, and so on. I found for every one of them much the same story. Even presuming that all the scientific evidence, even the poor-quality studies, are done meticulously and honestly and interpreted correctly the benefits claimed are absolutely minute. Nobody with a healthy sense of portion should pay any attention to (for example) one chance in 10,000 of living several weeks longer. And yet we continue to restate and celebrate healthy eating’s imagined massive impact on our chances of getting sick and dying.

Thinking about what might be going on I wasn’t able to imagine in favour of healthy eating the kind of powerful self-interest that might explain, for example, why we spend billions of dollars on drugs that don’t work. There are lots of healthy-eating academics who benefit from publicity around diet, but that didn’t seem enough to explain the absolutely universal public obsession with junk food, the Mediterranean diet, and the epidemic of obesity.

In this upcoming book (“upcoming” is probably going to mean published electronically) I speculate about the influence of scientific healthcare, and also about how human beings feel about food and how we gravitate towards ideas about what we put in our bodies. It turns out that nourishment is not only fundamental to each of us as individuals, but has had an unavoidable influence on the development of our brains, behaviour, and a lot of other stuff beyond our digestive systems. Food matters so much that we are designed to bring our sophisticated thinking and organizing to bear on its acquisition and consumption, but also on ideas about what it is and what it means.

At the moment I’m calling the book Delusion for Dinner but as anyone who has ever tried to write one knows, coming up with an effective title for a book is not the easiest part of the enterprise. I’m sure I can do better. Meanwhile, I’m putting the finishing touches on the references and exploring how to get my magnum opus out to the public, who can’t wait I’m sure to be freed from all their firmly- but unhappily-held diet myths.

Stay tuned.

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Putting Out Fires

I’ve worked in a few provincial and federal government healthcare agencies: a pharmacy plan and veterans’ services for example. I understand how difficult it must be to allocate public funds in a rational useful way, keep constituents satisfied and higher-ups happy at the same time, and face hard-to-predict sudden changes in funding and priorities.

I also appreciate that every doctor, nurse, or social worker dedicated to the care of a particular group (premature babies, HIV patients, people on dialysis, vision-impaired) sincerely believes that their patients deserve at least a fair slice of the financial pie, never mind worries that if their program were cut back or closed they might be out of a job. And that it’s not so different in the United States where the allocator of funding is (or is supposed to be anyway) a market rather than political priorities.

The trouble is that the future is not predictable. Crisis occurs unpredictably and often. Spending freezes, key personnel changes, and sudden unforeseen needs happen all the time. This translates to administrators’ attention being diverted without warning from planning and implementing programs to dealing with impossible-looking situations that come out of nowhere: putting out fires.

We face just such a crisis right now in Vancouver where I work. Characteristically we have only rumours to go on, administrators (as I would if I were in their circumstance) being reluctant to reveal specifics before changes actually take place. But in broad outline, there appears to be a large expenditure on a health records system looming, and for some reason the money for this has not been set aside. Clinical programs, therefore, have to be trimmed. Exactly how this will occur is spun (again understandably) as a planned and rational reorganization that will improve efficiency, save costs, enhance service, and ensure a secure future. But if there’s any substance to the rumors the dollar figure allocated to many clinical programs is going to decrease.

Our home-care of frail elderly program is (as I will post on shortly) not unique. Programs caring for homebound elderly (frail, frequent-flyers, end-of-life, disproportionate consumers — call them what you will) that are focused on meeting old people’s individual needs, keeping them away from futile hospitalization and mountains of ineffective drugs, responding to crisis as an alternative to calling an ambulance, all based on a relationship of trust, have sprung up independently in a dozen or more places in Canada and the United States. One of the perhaps surprising but consistent characteristics of these programs is that while giving care that is desired and requested by patients and meeting or exceeding safety and other outcome measurements, they save money.

Shocking isn’t it. A healthcare program that is actually both better and cheaper.

The evidence for this cost-saving coupled with demonstrably better care is accumulating quickly and should now be impossible to ignore. And as we survey the huge variety of health programs served by any big budget like a private provider in the US or a health region in Canada, the combination of better care and lower cost must be pretty hard to find, if not unique to these relationship-based home care programs for frail old people.

Back to the administrators’ dilemma: what programs do we target for unavoidable cost cuts? It seems only reasonable to distribute the bad news more or less evenly. But in reality political and other considerations also weigh heavily. To decrease funding for a pet program of a nationally-known academic, a highly-publicized world-class research initiative, or a ward in the hospital caring for sick children that has recently been featured on TV is asking for the kind of trouble nobody needs when funding is tight, jobs are threatened, hospitals are obviously inadequate, and everybody is looking for someone to blame.

But just a minute. Are we really contemplating cutting funding for a program that is saving money and will continue to do so? How reasonable is it to kill a goose that is laying golden eggs every 24 hours for a fiscal purpose? Even if that goose isn’t exactly a media-darling poster child?

This is just what may be about to happen to our homecare of frailty initiative and dedicated elder care wards and short stay crisis centers that support it. Administrators: bless you for undertaking one of the world’s most difficult and thankless jobs and shouldering the blame for everything that goes wrong.

But for gods sake don’t cut down the money tree. Don’t lop off the only cost-effective branch that has a fighting chance of saving the budget as the baby boomers start to crowd the emergency rooms in years down the road. That would be both a terrible mistake and, when it hits the media, a public relations nightmare.

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“JAILBREAK” post picked up

Writers and administrators at the US health policy organization Altarum Institute kindly took notice of my recent post on getting an elderly patient out of the hospital. It’s live on their website.

I’m grateful for the added visibility and look forward to a chance to contribute further.

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Housecalls 6: JAILBREAK!

Gertrude (not her real name of course) is a just-about-90-year-old lady with red hair living alone in a small one-bedroom apartment overlooking the beach. The place is… not cluttered exactly, but packed with mementos: photographs and paintings on the walls, small objects on every horizontal surface, a cat. Gertie has been an entertainer most of her life and sang and danced for the troops overseas during World War II. “God we used to have fun,” she says about those days. She’s quite a doll.

But also high-strung. She gets worried when things don’t go well, hates her indwelling catheter which she can’t do without, wishes she didn’t have to walk with a walker, and isn’t sure why she’s short of breath (I’m not either).

A couple of months ago Gertrude woke up with a pain in her right groin. I was pretty sure it was a pulled hip-flexor muscle from a forgotten awkward turning-over in bed, and for a while she was fine with some Tylenol. But then it got worse. Eventually we bit the bullet and Gertie went over to the emergency room where the right groin area was imaged (twice because the first scan wasn’t clear). Meanwhile I had slowly increased the dose of her morphine-related medicine to try and control the pain and keep her on her feet.

But things did not go well, and finally when the medication was causing confusion and still wasn’t controlling the pain there was no choice but for Gertrude to be admitted to the hospital to see if we could find out why she was so sore and try to fix it. Everybody including her regretted this and I thought to myself that this could be the last she saw of her beloved apartment.

The hospital admission featured the usual: multiple specialist referrals, every kind of imaging of the groin area and everywhere around it, and not much attention to getting or keeping her mobile. After two weeks still nobody knew the cause of the pain although there were plenty of theories, and Gertrude was spending more and more time in bed. A geriatric specialty team including occupational therapist and physiotherapist wanted to send her to a different institution that focuses on rehabilitation, but I was worried that the rehabilitation would consist of walking once a day and lying in bed the rest of the time.

But a couple of positive things happened. A capable resident doctor with my encouragement switched the morphine to gabapentin, a drug effective for anxiety and also pain coming from nerves, the confusion mostly cleared, Gertrude was eating better and starting to stand up.

Still the geriatrics team didn’t feel she was safe to go home. What if there was a fire? How was she going to use the toilet? When I went in and walked her, she was almost back to her old state of being mildly forgetful and slow and a bit unsteady walking with her walker, but she was making progress. Our community physiotherapist saw her and agreed that the risk of sending Gertrude home to her familiar surroundings was less than the risk that she would get stuck in the hospital or rehabilitation institution and never get home at all if things continued as they were.

So in the face of persisting disagreement with the hospital professionals, we set up temporary four-times-daily home help, organized her medication and mobilized her family to visit, and sent her home in an ambulance.  Three days and counting, she’s doing fine.

What is this huge and consistent difference between the way hospital professionals understand risk and safety, and the way equally-trained people who work in the community see it? Why does the hospital seem at times to function like a corrections facility? Could the problem be the people in hospitals? No!  They tend to be incredibly good at what they do, highly-motivated, and caring about the people they serve. I think it must be the hospital policy of avoiding risk, and the hospital mind-set that in my opinion incorrectly believes that being in a hospital is somehow fundamentally good for people.

It isn’t. Underlying this thinking is the idea that society must contain the taboo reality that every frail person is subject to crisis (after crisis), and then they die. And one of the functions of hospitals is to accomplish that. I wonder how badly we really need that basic falsehood?

What should we do? Start by crossing the hospital-community boundary professionally. We wild and woolly housecall folks need to get back into the hospital in a friendly consultative way, but we also need hospital people who understand the community mindset. Some internal medicine geriatrics doctors get this, and I could imagine a hospitalist with experience in the community doing it too. Elderly person going nowhere in a $1200-a-day bed who wants to go home but looks like an accident waiting to happen through the hospital’s glasses? In-hospital community consultant sees him, does some shared decision-making with him and family, everybody understands and documents the risk, and back home he goes.

Kindness, collaboration, honesty, good healthcare practice, and needs being met. All on a reasonable budget.

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FP RES

Welcome, Family Practice residents. This post provides access to materials for our upcoming session. Viewing them may work better if you save them to your machine rather than running them on the site.

Other visitors, welcome as well. These PowerPoints and other resources are part of our Community Geriatrics teaching program for Family Practice residents.

PowerPoints:

Frailty Introduction
Mobility Failure
Evidence Based Approach To Falls 2008
Cognitive Impairment
INCONTINENCE
Prescribing
Keeping frail Out of the Hospital-

This item is miscellaneous references on relatively non-clinical topics, many of them from my own website:
REFERENCES ON DIVERSE TOPICS

Here I present case vignettes from my book A Bitter Pill, to give you a flavor of homebound frail elderly people, and possibly to serve as a basis for discussion:
Clinical Narratives from A Bitter Pill

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Further Adventures of the Geriatric Doctor-in-Law 5: The Trial of Therapy

Here’s an anecdote to illustrate one of my favorite principles: trial of therapy, not high-tech investigation leading to cookbook care.

Mother-in-law Liz has not been that great lately. Quite confused with no obvious cause, but also complaining of pain. Pain in the shoulders, pain in the forearms, but recently also chest pain. Of course we take chest pain seriously because there are an awful lot of important things in that part of the body. But often you can tell the cause of chest pain just by asking the right questions and listening carefully to the answers. Unfortunately because Liz doesn’t remember very well the answers aren’t always accurate.

The only thing that seemed to worsen the chest pain was exertion, which for Liz means walking more than about 30 seconds with her walker. She certainly has heart disease and the trouble with her aortic valve is not going to get any better. Physically going over her heart and lungs, it was pretty obvious that the ribs where they join the sternum or breastbone were sore, even just to light pressure.

That finding is a welcome one to every emergency room doctor, because it usually means that a complaint of chest pain is coming from the chest wall. That is the bones, muscles, and cartilage forming the exterior box of the chest, not the heart, lungs, esophagus, and big blood vessels inside.  It means we’re dealing with a relatively benign chest pain cause which usually goes away on its own.

But there was still that troublesome complaint of worsening with exertion. And that is usually angina, chest pain coming from heart muscle working under stress without enough blood supply. It can be a late complication of aortic valve disease, but it’s usually the result of hardening of the arteries that supply blood to the heart. And another one of my favorite principles is “the commonest cause of anything in a frail elderly person is multiple causes.” So Liz could have had both chest wall pain and angina.

The tests to diagnose angina range from exercise cardiogram to the dangerous and high-tech imaging of the heart’s arteries themselves. But another far simpler test is just to try angina treatment and see what happens. So I got some nitroglycerin paste (the old-fashioned form of a common angina treatment), rubbed it on Liz’s skin under a little piece of paper, and walked Liz around including up the aluminum ramp at the back of their cabin. Any chest pain? No. Just a little short of breath. I reached a tentative conclusion that we were dealing with angina.

Next morning, getting ready to order the more current nitroglycerin patches, I decided to try one more step to be sure. I got Liz to walk through the same exercise routine including up the ramp, without any nitro paste. No chest pain.

Now it looked as if my chest wall pain theory was right all along, and that worsening with exertion just meant worsening with movement. And by doing my negative trial of therapy I had luckily avoided putting Liz on an unnecessary medication, when she was already on quite a few necessary ones.

Frail old people are oddballs. They don’t necessarily show us textbook signs and symptoms of textbook diseases. And only rarely is it feasible or reasonable to subject them to the gold-standard evaluations that specialists do to prove or disprove common disease states. My name for angina in somebody like Liz is “nitroglycerin-responsive exertional chest pain”. Because that’s what it is. Or more exactly “nitroglycerin-responsive exertional chest pain in Liz Clark”.

This is another example of what I’ve called human health science .  All the randomized controlled trials of surgery and drugs in the world are nothing, where this particular elderly lady is concerned, beside the real-world facts of what works for her and what doesn’t. The Platonic entity “angina” is no more than an artificial construct compared to what’s going on in her life at this particular time, and what if anything we can do about it.

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New website

I’m branching out. I’ve had a book-reviews page on my Sunshiners website for a long time, but I wanted to separate health care of the elderly from other interests, so there’s a new site for book reviews and also comments on restaurants and other lifestyle-type things.

Obviously a different crowd would be interested in where to eat and what to read, but eventually I’m going to deal with my health-plus-food preoccupation which is the idea that healthy eating is nonsense. Watch for the book upcoming soon.

Meanwhile please treat yourself to my magnificent spot-on opinions on the new site.

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Dr Sloan Speaking 2

I’ve found another video on YouTube of me addressing a small audience about care of frailty. Click here .

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Permission Not To

Getting on in a medical career, especially caring for elderly people whose priorities don’t tend to be technically-based or even specific, I sometimes suspect that my value to people if any is sort of symbolic. Not the white coat exactly but a source of information useful in a crisis. What should I do? people often seem to be asking.

An elderly lady who was mentally clear but had several incurable chronic illnesses got into trouble recently. She had been supported at home by our team and also looked after by her adult kids for about a year and a half. Although she expressed it in a roundabout way, there was never any question that she wanted to stay home, and also that she understood she was at the end of her life and was quite ready to die. Wanted to die in fact, without any convincing suggestion that she was depressed. She suddenly lost most of her independent function a few weeks before she died, and I wasn’t able even with the help of capable other team members to figure out why this had happened. We made an educated guess that she had a chest infection, but the antibiotics we gave her only made things worse.

After careful and I hope gentle conversations with her, it was decided that we would live with not knowing why she had suddenly gotten worse, keeping in mind the possibility however slight that if she went to the hospital, saw specialists, was examined and Xrayed, something that could be fixed might be found. Even if that happened, she insisted, the best she could hope for would be a return to her not-very-satisfactory situation of a few weeks ago, and more waiting for the next crisis. We set things up to keep her comfortable at home, and everyone including her family waited for the end.

Then something went wrong: she woke up one morning with a painful, pale, and cold left leg. Obviously the leg artery was blocked with a clot. Her kids (well into middle age of course) disagreed about how to construe this. The son felt it was just another step in his mum’s expected descent. But the daughter took this new turn for the worse to mean that palliation at home had failed and now it was time to get proper professional help. This view prevailed, and my patient landed in the emergency room.

There a capable academic vascular surgeon saw her, and tried to dissolve the clot with injections of strong anticoagulant medicine. This didn’t work. I had called in and explained to the emergency room doctor my patient’s expectation of death and preference for comfort, and then once the surgeon began his treatment I put in a phone call to him to convey the same message, but 24 hours later there had been no response. When I visited the hospital I was only able to say a few words to the lady who was sedated, unable to recognize me, and being hustled onto a stretcher to be taken for vascular imaging. The son let me know that the surgeon was going to try to remove the clot surgically, and if that failed which it probably would he intended to amputate the leg above the knee.

I’m used to dealing with patients’ and family members’ questions about the acceptable or right thing to do in all sorts of ambiguous situations at home when people are near the end of their lives. It’s okay, I tell them, for someone to die comfortably without our knowing exactly what caused the final fatal crisis. “If it were my mum…” I often say.

But coming up to the planned surgical rescue of my patient’s leg (actually rescue of her life, through sacrifice of the leg) I called the vascular surgeon again because I sensed this time it was not the patient or family that needed permission not to proceed according to textbook or cultural expectation. I was right. The surgeon once I got him on the phone was not at all the remote and supremely confident nuts-and-bolts technician I was expecting, but a troubled and reasonable person, wondering what to do with his obviously frail elderly patient, in the face of clear-cut guidelines concerning her leg that he felt he couldn’t ignore.

After I explained her circumstances and her wishes and we talked about the probable postoperative course and likelihood of her ever getting out of the hospital, he sounded relieved and agreed that the best thing to do was assure comfort for our patient.

She died less than two days later.

Permission. Sometimes I think it’s the most valuable thing I can give people. We are used to the idea of permission to do something, but often what we need is permission not to. Isn’t it interesting that the people who need that permission are sometimes the most highly-qualified members of my own profession?

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HOUSE CALLS 5: Cross-Cultural Crossed Wires

Mrs. Hii is an 85-year-old Chinese lady who speaks Mandarin when she speaks at all. She lives in a big condominium apartment with her husband who is a long-retired health professional. Poor Mrs. Hii has an incurable and advanced relentlessly degenerative nervous system disease, so she needs two people to assist her to get back and forth from the bathroom, and a mechanical lift to get in and out of bed. Her ability to mobilize is slowly getting worse. It’s difficult to know (with the language barrier, plus her being naturally laconic, plus the effect of her disease on the mechanism of making words) what’s going on in her thinking, but I’m told she knows her name and recognizes relatives, but would not know the name of the city or the year, let alone the date. Mild-to-moderate dementia we would call it.

I’m socialized in the laissez-faire school of care for frailty. I’m keen on avoiding futile medical investigation and treatment, and I try to offer my patients care that leads to comfort and function, avoiding high-tech medical rescue where it wouldn’t improve the remainder of their life. If that’s what they want. But I’m also a believer in letting people, including people’s “circle of care” (friends, relatives, neighbors, and society), decide what happens, especially near the end of their lives. But sometimes apparently purely ethnic-content questions are really something simpler.

With Mrs. Hii I thought I faced an ethics dilemma. I expect she will die of her disease, treated according to my usual practice and the prevailing ideology in Canada, within a couple of years. Her life could be lengthened by artificial means like antibiotics for infections once she is no longer apparently aware of her surroundings, or by feeding with a tube, or even being on a respirator, none of which anyone in the healthcare system I work in would recommend or in some cases even allow. But based on his instructions and conversation I had had (all through an interpreter) this is what I was sure her husband and family would expect and insist on.

The husband had been checking her blood pressure several times a day and has been determined to maintain it within preventive guidelines for younger people, even though her disease causes unpredictable blood pressure drops, sometimes leading to fainting. Mrs Hii takes three blood-pressure-lowering medicines, and nothing I have told the husband, including the opinion of a local neurology expert that too-low blood pressure may kill his wife sooner than too-high, changes his opinion. Mr. Hii also wants to keep broad-spectrum antibiotics on hand to give when her sputum turns dark-coloured, which it does regularly because her gag reflex is impaired and she frequently aspirates (breathes in) secretions and food from her mouth.

During many visits to their home I felt a shift in my own conviction about this situation. It seemed that Mr. Hii was determined to do for his wife the things that best expressed protection of her. In insisting on textbook care and resisting arguments against it, I felt he was honouring her and their life together in the best way he could. Loving her in other words.

So I held back, mostly, from getting strident about the unnecessary antibiotics and the dangerous blood pressure pills. I had told Mr Hii through the family’s interpretation of the futility and danger of what we were doing, but until recently I couldn’t bring myself to try to force my patient’s husband to abandon his wife to an ideology he fears and doesn’t trust. I shook the old lady’s hand and patted her gently on the shoulder, shook her husband’s hand, smiled and nodded at both of them, and acceded to the old man’s wishes. I was worrying that in the future we would face some more serious problems of this kind and I hoped I could succeed in keeping Mrs. Hii comfortable during any coming futile life-sustaining heroics. But I was determined to respect what I felt was a cultural difference deeply involving the relationship between my patient and her husband which I couldn’t properly understand.

Last week however there was an interesting epiphany. I asked the daughter-in-law straight out whether her father-in-law understood how long his wife is likely to live. The daughter-in-law replied that, no, they hadn’t had the heart to tell him. I realized that his insistence on textbook care for his wife wasn’t necessarily “cultural” at all, but just based in ignorance. Although I thought I had made everything clear, my duty to inform still hadn’t been fulfilled.

I sat the daughter down and explained carefully that a best estimate of her mother’s life expectancy is 1-2 years. The time it would take for elevated blood pressure to cause complications would be more like about 10 years, I said. I explained to her that her father-in-law’s participation in decision-making for his wife’s care needed to be based in realistic information. She promised to explain all this to the old man.

Lesson one here: there’s nothing quite like information. Even when it has to be translated, and even when it’s passed from one cultural frame of reference to a completely different one. As it happened with Mrs. Hii that trumped lesson two, which was that you never completely get yourself in the other person’s shoes, especially if they’ve worn them on a voyage from far away.

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Further Adventures of the Geriatric Doctor-in-law 4: Is This Reality?

It’s been awhile since I’ve posted about my in-laws, Liz and Nigel (awhile since I’ve posted on anything…). They’re doing fine, in some ways. But having them close to us and being our responsibility worries me a bit, and not in the way you might imagine. Not necessarily neurotic detail-worry about filling out Blue Cross forms, ordering incontinence products, and keeping advance directives up to date.

Two weeks ago, Nigel fell as he was transferring in the bathroom. He forgot to put the brakes on his wheelchair so it scooted backwards and he went down on the hard bathroom floor. It was his third fall in two weeks. Things seemed okay for the rest of that day and the night, but by morning just moving his left leg an inch or two produced a loud shout of pain. He had also been sort of sleepy lately, and couple of times had quite low blood pressure, so I “held” (asked the girls not to give) his one remaining blood pressure medicine. Plus he had a urinary tract infection when we did the labs so I treated that. The fall, sleepiness, blood pressure, infection, all fairly routine “medical” issues, seemed to be coming at us a bit thicker and faster than usual.

The Clarks’ wonderful family doc was away on holiday but still responded to my e-mail which I sent as usual to keep him in the loop and apologize for interfering. So we more or less had to decide whether to truck Nigel to the hospital to x-ray his hip or not. I got some strong opioid pain medicine (the pharmacist allowing himself to be talked into fronting the drug without the legally-required duplicate prescription form which I had left in town), and in a couple of days the pain did settle down without the misery and risk of going to ER. Nigel seemed to perk up a bit too whether because of the treated urinary tract infection or because he now had enough pressure to keep blood going to his brain. A replacement physician visited and reassured us.

We face some less technical issues with the two lovely caregivers who don’t always agree on details of care and definitely have completely different styles. Liz also likes things her own way and I worry that even though we have a unique “high-touch” arrangement going for them there may be a certain amount of suffering in silence going on.

But what really bothers me is the thought of what would have happened to 99.9% of frail older people if any of the things Nigel experienced these past couple of weeks had occurred. No daughter living next door (albeit four days a week) spending time listening and reassuring, no full-time caregivers partly paid for by a regional program, no funds to make up the difference, no psychiatric backup to fine-tune critical medications, no lovely familiar and beloved comfortable little house to live in, no experienced geriatric medical son-in-law to deal with technical issues and help weigh them against risk and overall philosophy … We are in trouble much of the time, with resources that would be unheard-of by just about everybody who needs them.

We face crises with a certain amount of equanimity because we have adjusted expectations during the “controlled descent” (as my respected colleague Ted Rosenberg would say) of frailty. We have what we need. But what about the dozens of bewildered people who phone me out of the blue after an Internet search, looking for house calls, help stickhandling the system, advice on finding a doctor, or a way not to lose hope durig a muddled lengthening hospital admission? I’m afraid we have a long, long way to go before we can congratulate ourselves on making elder care work for everybody.

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Tired Eyes: Why High-tech Medicine Doesn’t Work

There are a lot of wonderful things about general medical practice, but like anything else it occasionally gets, well, tiring. A fourth worried-well general physical exam at the end of a long afternoon is not something most doctors look forward to, hesitating with one hand on the examining room doorknob. The poor person shivering on the examining table is often ready with something like, “I feel lightheaded”, “I seem to be tired all the time”, or, “My legs don’t feel right”.

One of the vague complaints I dreaded but heard quite often in my office was, “My eyes are tired.” Eyes? Tired? Eyes don’t get tired. Sore, dry, runny, blurred, independent of one another sure. But nowhere in medical school or in any ophthalmology book had I run into real causes of tired eyes. People with tired eyes always seemed to have other kinds of trouble. Not enough money, lonely, can’t lose weight, taken advantage of at work. I would examine the eyes, find nothing, do a general physical going-over with blood tests: nothing. Healthy as a horse. Eye specialists must have felt tired themselves facing my tired-eyes referrals.

I wondered what was the matter with these people. The specialist report always confirmed a normal eye examination including 20:20 vision, and blinking at me between the lines was the specialist’s message, “Where’s your common sense Sloan? There’s no such thing as tired eyes.” I didn’t make much of an effort to avoid patronizing my patient in the summing-up appointment.

Well, for the last six months I have had tired eyes.

After 20 or 30 minutes, no matter how interesting the book, the print on the page starts to blur, I have to work at keeping my eyelids wide open, and I end up struggling just to see the lines of print. I’ve got to tell you my eyesight is near-perfect. My progressive bifocal close-up readers have been recently updated. I don’t see double. I don’t have early Lou Gehrig’s disease or multiple sclerosis (I’ve been to a neurologist). And I’m not falling asleep when this happens, I’m wide awake. My eyes just get tired.

It’s like my experience of patienthood as my father-in-law was taken to a nursing home, or when my daughter was born. It doesn’t make a damn bit of difference to me whether the trouble I’m having has a name, is the subject of a textbook chapter, or is obviously “psychosocial” and not the business of some professional trying to end his appointment and get on to somebody who has acne or heart failure that he can fix. Doesn’t matter. My tired eyes are real, even if they’re a product of my perverse imagination.

So how do I get rid of my problem? Could there be a magic answer? I believe in magic but not in the abracadabra kind. Changing large chunks of the physical world by waving a magic wand would make an enormous difference in many ways, but because medicine’s understanding is the best materialist version we have of the part of the physical world our bodies occupy and tired eyes isn’t in the textbook (to say nothing of the common-sense unlikelihood of abracadabra magic) I’m not expecting a fairy godmother to fix my tired eyes. What about the magic most simply referred to as belief? “Placebo effect” if you like. I don’t care that medical students in a hospital hallway titter among themselves over a patient’s miraculous response to a sugar pill. That patient really got better.

I don’t care that courage in tribal warfare following eating the heart of a lion is superstitious silliness, the battle was still won. And it doesn’t bother me a bit that for such magic to fix my tired eyes the complaint would have to be “psychological” to some extent. I’m “psychological” to some extent.

I do worry that belief works its magic best when it is engendered by authority. That would be pretty much by definition something or someone outside our self. Or would it? Could someone talk themselves into a placebo effect that worked? Maybe the wind changing some afternoon will carry enough authority to wake my vision up.

What I know for certain is that I see more and more human troubles to which my increasingly technocratic profession is blind. Or maybe our eyes are just tired. I see those troubles best when they belong to me or people close to me, when I’m potentially on the receiving end of professional help. Fewer and fewer of these troubles appear amenable to health technology. I want to take medicine by the lapels of its white coat and tell it as clearly as I can that refusing to address weird individual problems creatively is hurting our effectiveness. Technologic medicine has its own case of tired eyes, which maybe ought to be evidence enough that such things exist and that they need a different kind of cure.

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New England Programs II: Slow Medicine and Dr Dennis McCullough

I’ve held off posting about Dr. Dennis McCullough, whom I visited back in September, because I wanted to finish his book and also hear him speak.

He visited us in Vancouver this past weekend and gave two impressive presentations, so I’m ready to say a bit about this frailty-primary-care senior statesman and advocate, colleague, and friend.

Dennis went to Harvard on an ice hockey scholarship and was apparently a very good player. He carried on to Harvard Medical School, and then (against the stream of elite-school graduates at the time) opted for family practice over specialty, and came to Canada as a Family Practice trainee at the University of Western Ontario.

Personal experiences with his mother and with a disabling illness of his own added to his determination to change the course of the deadly impersonal technologic one-size-fits-all medicine he saw being practiced everywhere. So he has over the years built up a philosophy of humane care which he calls “Slow Medicine”, along similar lines to other movements including Slow Food, Slow Cities, and so on. Taking one’s time about things.

A senior faculty member at Dartmouth University in Hanover New Hampshire, Dennis has written a lovely book My Mother, Your Mother, and is a frequent and well-received lecturer all over the US and Canada. He supervises at Kendal-at-Hanover, an elders’ community near his home. The book is a practical guide to the events of aging and frailty, informed by an original and beautifully pragmatic philosophy.

Sitting down at a presentation by Dennis (he did one to the general public and one to geriatric physicians here in Vancouver) you confront a neatly-bearded lively scholarly gentleman who seems part philosopher and part… almost clergyman as he quietly brings his message to an audience. He has avoided developing the kind of slick delivery which makes many of us look like would-be standup comics or politicians whose reflective polish may obscure the original motivation and the message. Listening to Dennis, you feel he’s really talking to you (you can confirm this by checking out a video of him speaking here ).

What he says is not specifically program-oriented but contains a theory or philosophy of aging and practice of medicine. There are eight “stations” which usually proceed in sequence: stability, compromise, crisis, recovery, decline, prelude to dying, death, and grieving/legacy. Anybody starting to feel their age but still functioning like a young adult would be in the first one, and anybody familiar with aging parents or working at care of the elderly will immediately recognize the others. Talking briefly about each of them, Dennis makes it clear that where older people are concerned, there is no place for “fast medicine” with its efficiencies and disease-model approach.

Instead, he proposes careful listening, deferred decision-making, and generally “long slow cooking” through each of the “stations”, informed by a “circle of caring”: everybody closely involved in an old person’s life which may not necessarily be confined to or even include family members. At one point he advocates primary care doctors giving people their home phone numbers, as they used to do in the 1940s and 1950s. I can attest to the effectiveness of even that simple change at reassuring worried people and avoiding unnecessarily letting slip the dogs of technology.

Dennis McCullough is part of an organization of physicians doing community geriatrics in the United States. I hope to connect with them to get myself and some of my wonderful Canadian colleagues into an international dialogue. What’s absolutely clear is that without, in the beginning, any coordination or top-down ideology or direction, a couple of dozen programs have independently sprung up, all with the underlying idea that once frail, a human being needs and deserves loving personal individual healthcare. How can such a concept be wrong? How can it not be needed if it has spontaneously appeared in near-identical form in so many places?

Look for my book review of My Mother, Your Mother.

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New England Programs I: Full Circle America

In September I did another holiday-cum-healthcare-research road trip, this time to those northeastern US states referred to as New England: Massachusetts, Rhode Island, New Hampshire, Maine, Vermont. I was privileged to visit and meet with the leaders of two programs there designed to keep frail elderly people at home, out of nursing homes, and out of the hospital: Dr. Chip Teel of Full Circle America on the coast of Maine ( http://www.fullcircleamerica.com/ ), and Dr. Dennis McCullough, founder of Slow Medicine at Dartmouth University in New Hampshire (details to come in my next post). I felt more than ever that we are on the right track in Vancouver after talking to both of these brilliant innovative guys.

Chip Teel comes across as a high-octane entrepreneur and elder-care visionary. Our first day there, Robin and I had dinner with Chip and his wife Carol at a down-to-earth local pub off the main street of charming Damariscotta, the small Maine town where they live and he practices. The next morning Chip and I sat in his office and discussed his program, he presenting me with a copy of his book Alone and Invisible No More and showing me the system he has in place and hopes to introduce elsewhere, and I peppering him with as many variably relevant questions as I could get in edgewise.

Here’s what I found. Dr. Teel’s vision for home care for frail elderly is based in widely-experienced and genuinely-felt common sense. I was delighted that we agree on many things, confirming my impression from visiting a program in Manhattan in 2010 that our problems and some potential solutions span national borders and health-care systems. The first question Chip asks a new frail elderly patient is, “How do you want to live the rest of your life?” The second, “What can you and your family do for other people in the community?” These open the doors on two fundamentals of his practice: every elderly person is entitled to decide for themselves, and things work best when people help people. He believes in “the dignity of risk”, which means that when you take away someone’s right to live at risk (closely connected to their right to living their lives the way they want to) you dehumanize them, treat them like a commodity, and un-dignify them.

(I can’t avoid mentioning the linguistic entropy that seems relentlessly to destroy constructs like “dignity”, “living at risk”, and also “evidence”, “patient-centeredness”, and now most recently “primary care”. I find the consequence of creating meaninglessness where previously there were critically important ideas terrifying. I’ll try to do a post on this…).

My next lesson from Chip Teel was economic. An American down to his sneakers, he understands the significance of money in health care the way I’m afraid few Canadians do. My own brief foray into the economic impossibility of high-quality interdisciplinary home care of frailty involved a proposal I made to a private-enterprise organization here in Vancouver which was eventually rejected because the dollar numbers didn’t add up. The truth is without new money you have to somehow save money to make frailty-at-home care sensible. Dr. Teel’s answers: first, involve the community. Volunteers in other words. Second, use smart technology.

His presentations, book, and other information about the Full Circle America contain all sorts of examples of next-door neighbors, similar-interest new friends, family members, and kindly souls pitching in to do (usually for free) things that without their help would cost money. Transportation to and from appointments, getting an elderly lady to a nursing home to do a piano concert, teenagers popping in at noon to make sure the old guy up the street has had his breakfast, sort of thing. I’ve heard the criticism from, say, Canada Health Act fundamentalists that a program which relies on volunteers isn’t sustainable or politically correct. And more credibly for me I also hear the one summarized in the comment, “Spoken like someone from a small town.” It’s much harder to develop the kind of networks that work in Damariscotta (pop. just over 2000) than in most neighborhoods in Vancouver with its million and a half people, let alone Toronto or Los Angeles. But that doesn’t mean it can’t be done in some attenuated or different way. The biggest city in the world is made up of an awful lot of neighborhoods.  But it takes a sincere intimate experience of each of those neighborhoods to get mutual responsibility going.

Full Circle America will I imagine also be seen by some people (it was initially by me) as a techno-gizmo for sale. It’s far, far, more than that, but there are techno-gizmos involved in its second money-saving idea. Teel monitors his patients with digital cameras, images relayed to a central facility where a technician evaluates images one, two, or more times per day, and automated algorithms trigger warning messages in the event of alarm-features. Opening the exterior door after midnight in winter, out of bed at night for more than 30 minutes, or in the bathroom any time for more than 90 minutes, for example. The inevitable privacy-invasion objection Chip counters by comparison to the much nastier privacy invasions in institutions. Most people would choose little cameras potentially watching their bedroom  all night at home over two or three hospital ward door- or curtain-openings without warning by staff with flashlights. By using this monitoring (and the technology gets more sophisticated all the time) people who would otherwise need a 24-hour paid person at home might manage with two 2-hour visits per day and round-the-clock computer surveillance.

Full Circle America isn’t perfect (what is?). I don’t quite share Dr. Teel’s belief in full generalizability of what he’s doing. I think the concepts of micro-cultural cooperation and the use of surveillance technology are portable, but dazzlingly comprehensive attention to detail, one of the program’s great strengths, might be reflected in a certain inflexibility as Chip struggles to reproduce it in other communities. It is at very least an important chunk of what we will eventually use to establish home care of frailty the way everybody knowledgeable knows it needs to be done.

Dr. Teel has confronted the problem many of us know so well, come up with original ideas (some of which have also independently occurred to others), and most critically made them work on the ground where he lives and works. Visionaries like him make the rest of us proud. Spreading the word, pulling networks together, and trying to be as practical as he’s been will I believe help us get where we want to go.

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The Missing Ingredient in Medicine: TRUST

A friend of mine is interested in trust. Not the kind that lawyers and bankers deal with, but the strong intermolecular force that makes human interaction possible. If you catch a lawyer or banker at the end of the day and stand him a couple of drinks, he will admit that no matter how well he does his job, without risk there would be no contracts. No loans, no corporations; no deals. The hardest-headed negotiator must take a leap of faith. And the best deals put everybody to work when unpleasant surprises occur. I think my friend has a point: maybe we should all be interested in trust.

It follows from any necessity of trust that when it dries up, things that depend on people agreeing stop working. And maybe, says my friend, that’s what’s gone wrong with health care.

Say she’s right. Imagine that an unspoken contract has to exist for healing to work its magic. Contemplate for a moment that without that contract (whatever it is) the only thing we get from the doctor and the pharmacist is the material click clack of chemotherapy molecules and cell walls. Satisfactory professional performance criteria met, but in case the bad stuff hits the fan the professionals are some distance off not to get any on their white coats.

Let’s for purposes of argument presume that technical intervention alone doesn’t meet human needs, both of the “givers” and the “receivers”, and that something extra is required in the healthcare… what… setting? Interaction? Contract? And let’s also say that part of what’s broken in health care is that this extra piece has been lost. I have to confess I’m a little scared of the next question if we were interested in trying to recover it, which is What is it?

My usual strategy facing questions I don’t think I can answer is to confess I don’t know. And I don’t. But one afternoon I sat with this same friend and heard her describe her husband dying in hospital and how much of the horror of it came not from the tragic events, but afterwards, from the doctors and administrators frankly not telling the truth, not accepting their role in the piece, not sharing the burden. Suddenly I was starting to cry in front of someone I (at that time) didn’t know very well.

I knew the trust she was talking about. As a child in the 1950s I had felt my parents’ relief as an old-fashioned pediatrician told them not to worry, the little boy was going to be okay. It wasn’t the doctor’s technical understanding they trusted so much as knowing that we mattered to him. Even if he was wrong, they knew he would be back to reassess, rethink, explain, admit uncertainty, and try again. And I think my parents understood that if in that most unthinkable of all possible worlds somehow the little boy died, it would break the doctor’s heart too.

I went into this business partly to participate in that exchange. I wanted to be able to give and receive that wonderful trust. Over the years I’ve figured out that you can only do that by promising to take responsibility, and keeping the promise. That trust means a great deal to a person with a health problem, but it is also by far the most satisfying experience someone doing healthcare can have. It can only happen when the professional person has something visceral invested in how effective his help is.

But something has gone wrong, and I found myself grieving in front of my friend, sorry for we doctors’ having shortchanged the world, including ourselves, by not keeping our old human promise. We’ve diminished the gift we give and receive by limiting it to delivering technical and statistical goods. You’re the unlucky statistic with a bad outcome? It happens. Tough. Why does the doctor go home at the end of the day not quite understanding why he feels empty and frustrated? He abandoned his trust, reneged on his contract, and forsook his patient when she needed him most.

Still trying to name what is missing, what the thing the doctor was supposed to do looks like, I went online. Sure enough, trust itself is a subject that’s been studied, and we know this because there is a literature, experts, acronyms, classification, and controversy available to anybody with a computer. For example we have CBT and IBT: “Content Based Trust” and “Intuition Based Trust”.  I would say this disjunction represents a superficial right and left in the healthcare trust dilemma: “Let’s trust one another because the doctor knows his business” versus “Let’s trust one another because we both feel the other is trustworthy.”

I wonder if we are all being invited by trust academics to take sides. Side One (CBT): silly ill-informed people superficially agreeing to feel good about one another equals bad, evidence-based information people can rely on equals good. Or Side Two (IBT): all-knowing expert dictating to ignorant subject equals bad, two people talking things over equals good. Take your pick of the two points of view about “what trust is”. But neither of them is satisfying.  Blind trust in authorized “fact” is scary and dangerous, but thoughtlessly agreeing that everything is okay because two people get along well doesn’t take account of personal realities either.

I think there is a solution.  For me the magnet that can pull CBT and IBT together is mutual investment in the outcome: shared responsibility.  Call it “RBT”.

If I had to decide, I’d be inclined toward an intuitive rather than cognitive basis for trust because I think we put too much emphasis on science. My pediatrician from the 1950s would have been doing “scientific” things that would horrify us today. But neither cognition nor intuition is worth much unless we feel and carry responsibility toward one another. Just dispensing information or just giving somebody a hug are both pretty thin excuses for taking our share of the blame or credit.

We may look the other guy in the eye and shake his hand as we agree to do a risky operation or close a business deal, but what if things go wrong? Even though we meant well, it’s hard to predict the future. Science’s methods of predicting the future aren’t perfect. The best intentions don’t matter unless in the end we both have to deal with the upside and the downside. Life’s risky. My friend is right when she tells me the only safety net beneath us on obligatory leaps of faith is making sure we’re in it together.

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Further Adventures of the Geriatric-Doctor-in-Law 3

We are now many months into the bold experiment of looking after Robin’s frail parents in their Roberts Creek home. Avid readers will recall our success at getting Nigel out of a nursing home and Liz out of the acute care hospital. Here’s an update.

Short story: everything is fantastic. We have two wonderfully kind and effective home-support ladies who together cover 24 hours seven days a week. There is a friend of one of them who takes casual shifts if for any reason somebody can’t show up.  This arrangement removes the big stress of having to spend nights with Liz and Nigel ourselves, because we couldn’t afford the previous arrangement through an agency. Once a week we bring them both over next door to our place for dinner. And even with the absolutely dreadful late-spring weather we’ve been having, they are getting out on the patio and into the small back-yard space.

Downside: nothing, really, at the moment that wouldn’t be expected.  The physical care is significant and there have been a couple of falls. The other day Robin and I both had to help get Nigel out of the bathtub when he slipped off the  electric lift. Not sure what the caregiver would have done if there hadn’t been anybody around… And occasionally things are psychologically less than ideal: minor conflicts, unreasonable demands based on a dementia view of the world, and so on. Liz’s Clostridium Difficile bowel trouble is back, a legacy of the hospital admission, which is resisting conventional treatment. We are chasing down some advice on that.

Longer story: of course we have no idea. There are bound to be logistic, health, psychological, maybe financial, and social issues that are unpredictable and may be hard to deal with.  One thing for sure, this summer honeymoon won’t go on forever. But we’re ready to cross various difficult bridges when we come to them, in the meantime enjoying the success day by day .

Here are a couple more photos to illustrate that frailty doesn’t always have to be horrifying. Sunshiners!

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Human Health Science

My campaign to encourage what I see as common sense in care of frail people gets tangled up with another interesting controversy.  It’s got several names: patient-centered care, patients’ rights, shared care, and others. The idea is that whereas traditional or academic medical care does healthcare as if the focus or center of things were a disease to be diagnosed and treated, a better point of view would be to see that center as a person, whose needs are to be met.

These are attitudes, of course, and the healthcare events may look just the same between the two of them, with any underlying philosophy never mentioned or even thought about. Other times, there is a huge and radical difference between what goes on if our underlying focus is on disease and treatment, and what goes on if we’re looking to do what someone wants.

Congestive heart failure in my 80-year-old mother-in-law is very different from CHF in a 60-year-old man who is just coming to the fulfillment of a long successful career. The disease as a heart specialist would see it may be very close to identical: pressures and gradients across valves and pump function numbers could be the very same. And the academic guidelines for the treatment would also be identical. But what we have to think about, what questions we should be asking, and what we should be doing are as different as night and day.

A recent post by Dr Steve Balt, a psychiatrist, illustrates this. He framed the issue by suggesting that, because no two people who have any psychiatric disorder (and this goes for disorders or diseases of any kind) are the same, could it be that it isn’t just the people (and their circumstances, their finances, their personality, their upbringing, their willingness to follow a treatment regimen etc.) who are different but the actual disorder itself that’s different? Never exactly the same?

Dr. Balt was careful to emphasize that we health professionals bring a scientific understanding of disease as fundamental information when we look at someone with a problem. He’s right of course in one way, but there’s another step in the scientific process that we tend to overlook. It’s the experiment that goes on every time a doctor or other healthcare provider and patient agree to try a treatment, or not to. What will happen? Of course nobody knows. The textbook, guidelines, evidence-based scientific prediction of what will happen is one thing, and then there’s what actually takes place. I’ve always believed “what actually takes place” is the more important of the two, but now inspired by this reframing of what we call a “disorder”, I wonder if we should be seeing healthcare science a bit differently.

Experiments in populations will always continue to give us general information about likeliest events across groups of people. And the information coming from those experiments typically carries the credibility and unquestioned authority of the idea “Science”. But what if the weight of that authority was applied to individual people’s circumstances, so that we were forced to respect, ignore at our serious peril, and call scientific, “what actually takes place”? The thing that happens to Mrs. Murphy after I decide to put her on a diuretic?

Doing things this way might address what Ivan Illich was worried about in the 1970s in Medical Nemesis:

With the transformation of the doctor from an artisan exercising his skill on personally known individuals into a technician applying scientific rules to classes of patients, malpractice acquired an anonymous, almost respectable status. What had formerly been considered an abuse of confidence and a moral fault can now be rationalized into the occasional breakdown of equipment and operators. In a complex technological hospital, negligence becomes “random human error” or “system break-down”, callousness becomes “scientific detachment” and incompetence becomes “a lack of specialized equipment”.

For me, looking after fragile old people has been the antidote for the wrong kind of scientific perspective that afflicts so many of us in my profession. But I’m talking about looking after frail people according to what they want, not reflexly incarcerating them in hospitals, stuffing them every morning with preventive medication that can’t possibly be in their interest, and disregarding their wishes because they are exceptions to every epidemiologic rule.

If it were considered unscientific not to focus on each patient’s unique situation, if physicians and other helpers were demoted and sued for disregarding what happens to their patient when it doesn’t line up with expected outcomes, and if they were respected and congratulated when they did the opposite, isn’t it possible we could start putting the patient in the center of the picture?  Even begin to get trust back into health care?

Time to rethink health care “science”.

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HOUSE CALLS 4

Nothing’s perfect. But I don’t think it’s too much to expect for things to work out acceptably, at least some of the time. There follows a sad story with only an ambiguous and implied moral.

Dusan Havel (not his real name) is 89 and until recently lived in a tiny rented apartment inVancouver’sWest End. Mr. Havel hails fromBohemia(in theCzech Republic) where he studied horticulture in university and developed his own landscaping business which he re-established when he got toCanadain the late 1950s. He never married, but carried on an active social life until about eight years ago when a blood disorder and arthritis confined him to his apartment, except for twice-monthly treks to the hospital for transfusions.

I met him about a year ago. The referral notes warned he was paranoid, resistant to care, and unreasonably demanding so I was geared up to deal with a crabby miserable old crock. In fact Mr. Havel was charming in a wry Central European way, cracking jokes at his own expense and being gently ironically deferential to me, “The Doctor”. We got along just fine. I was able to get rid of three-quarters of his medication and he felt a bit better.

Often I had to buzz the manager to get in because Mr. Havel couldn’t get to the door. His daily home support workers had their own key, but incredibly the landlords wouldn’t let me have one, and the home support agency refused to let me copy theirs. His mobility was so-so and often when he did come to the door his pants were down, having just been in the bathroom. The apartment was shall we say minimalist, but always clean and full of strange-looking plants which he somehow kept alive. Mr. Havel was slowly losing weight, not eating well, and hated the trip to the hospital for transfusions. I got him eating much better-tasting cheaper meals by discontinuing the special diabetes and low-salt diet he was on (he didn’t have diabetes or high blood pressure…).

We talked about the future. “I’m an old man,” he said in his hoarse high-pitched accented voice. “I’m ready to die, but let it come to me. I’m not going to jump out any windows.” Two or three times we talked about continuing the transfusions or not, both of us knowing that if he stopped them he would die in a few weeks, and each time he shrugged his shoulders and said, “Let’s keep going for now.” One thing he was absolutely sure about was staying in his apartment. He said he’d rather die than end up in a hospital or nursing home. Of course I promised to support him in that.

Just back from three weeks away I was stunned and bewildered two weeks ago to find that Mr. Havel in the hospital. What had happened? Well, somehow the responsible people (who ended up being replacement home care nurses who didn’t know him and home support agency supervisors) didn’t call the doctor on call for me, who would have had access to my electronic record documenting Mr. Havel’s wishes. When he fell and seemed to be “going downhill”, they called an ambulance. He sent the paramedics away, only to have someone call them again the next day. I guess he must have been drowsy or unable to resist their intentions for some other reason, so he was trucked into the ER.

The hospital diagnosis was anemia and “failure to thrive”. Nothing specific: no heart attack, no pneumonia, no urinary tract infection, no fracture, just his usual well-known, well-documented, and well-treated low red blood count. Our home care of community frailty program tried to convince the hospital “team” that we could manage him at home (he wasn’t much different from how he had been all along). But the opinion at the hospital was “he can’t cope”. He had urinary incontinence (couldn’t get to the bathroom because the siderails were up on his hospital bed), fecal incontinence (diarrhea from hospital-acquired Clostridium Difficile infection), confusion (delirium from the C Diff and who knows what else), and impaired mobility. When I saw him on the ward he was nodding forward onto his breakfast, but in spite of being half asleep he was able to stand and transfer to the bed with no physical assistance. About the same ability to get around that had served him adequately at home.

Today a very nice internal medicine resident called asking me to help them figure out whether Mr. Havel (who understands he’s going to a nursing home and is now firmly refusing transfusions) is mentally capable of making that decision. I’ll go and talk to him, but I’m sure he is.

What have we learned? Nothing new. “Advance directives” may not count for much. “Client-Centered Care” likewise. The hospital and the community see function and risk through completely different sets of spectacles. And having your frail parent looked after by a 24/7 multidisciplinary home-care-of-frailty practice like ours doesn’t guarantee the outcome you want.

Who are the bad guys here? Not the home support supervisor (just doing her job), not the home care nurses (not paid or mandated to run risks), not the paramedics (would you leave a pale weak old man alone in his apartment when somebody had called for help?), not the receiving ER doctor (who can’t not admit somebody with Mr. Havel’s level of function apparently in crisis), not the hospital doctors (whose job it is to fix things and who have no idea where Mr. Havel is coming from functionally and philosophically), not the hospital unit coordinator (head of the “team” and responsible for doing the reasonable thing), and not me either, I hope (even though when I said so long to Mr. Havel eight weeks ago after describing my upcoming holiday in Prague and Budapest I had a sneaking feeling it could be the last time I saw him in his apartment). He said, “My God,Central Europe!” holding up his hands as if beseeching a blessing. “Eat some goose and sauerkraut for me.” I did.

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Bad Hospital Care: Fragmentation Equals Trouble

When I was working in a small hospital in the city many years ago, nursing administration decided that all nurses were to rotate through all the services. Operating room nurses had to do a shift in emerg and on a general medical ward, for example. The idea was to broaden everyone’s experience, I think. It didn’t work because there was more to great nursing than fundamental skills or what nurses could pick up from inservice lectures. Difficult nursing jobs were familiar to people who had been doing them for years, and that familiarity couldn’t be replaced by experience of a few days or weeks. And patients were seeing a different nurse almost every day.

There have been two similar changes in my own profession. First, disasters or medical mistakes in hospitals got people excited about the ungodly hours trainees had to endure on call, and those shifts were limited so that no resident doctor was ever on duty for more than 24 hours at a stretch. Definitely a good thing for the residents’ peace of mind, but it also increased the number of doctors required on hospital services. More faces, less time (I don’t think there was any reduction in hospital disasters and medical mistakes, by the way). The rise of hospitalists resulted in people’s primary care doctors (family physicians or internists) only visiting them socially if they were in the hospital. Hospitalists pass care of large numbers of people on general medical words back and forth.  The idea is that they make comprehensive notes for each other, although looking at hospital progress notes sometimes makes me wonder about that.

Thing is, these changes affecting doctors haven’t worked very well either. Handing over care may be okay on a surgical or medical subspecialty ward where the care is 95% technical: one specialist can check if the stent is working as well as another. But where the patient’s motivation, confidence, and sense of hope about the future figure in whether he makes it out of the hospital or not, something important disappears when he has to rely on a different face every 48 hours for trusted reassurance, congratulation for small progress, and fine tuning of treatment from one day to the next.

This increased fragmentation of care in hospitals was one of the things that nearly killed my mother-in-law during a recent hospital admission after a fall. The absolutely professionally capable, perfectly well-intentioned, tirelessly hard-working nurses, physiotherapists, doctors, and social workers, who came and went every few days it seemed, couldn’t really get to know her and still do their jobs. Especially on weekends.  So they never saw and got the gist of the big, real picture.  How was she walking before she fell? Why is she on this medication and are the bad effects offset by good ones? Which kind of transfer on and off the toilet is easiest for her? When she has to go to the bathroom, will she ring the bell? How long has she been in the hospital anyway? Frail old people in the hospital can just dwindle for obscure reasons, sometimes because they believed nobody knew them, or cared. The medical record of course reads like nothing went wrong at all.

Well something has gone wrong. Three to five days is not enough time to get to know somebody. At the risk of sounding like Chicken Soup for the Soul or worse, it’s about the relationship. To imagine that a person in trouble in a hospital can be processed by protocol as long as the protocol is comprehensive is just wildly radically nuts. It would be as if we offered looking at perfect oscilloscope pictures of sound waves in place of sitting in a theater listening to an orchestra. The whole meaning and purpose of the thing is gone, and we are presented instead with an idiotic smiling simulacrum, like the kid in the bank ad who gets a cardboard cutout instead of a real working red truck. In place of somebody you know greeting you every morning to reassure that they understand what’s going on and want you to get better, you see a shiny new face asking the same questions you’ve already answered eight times, like somebody starting from scratch.

Administrators who assume that professionals are interchangeable may want to know what’s the problem? You expect some violins playing, some kind of Disneyland magic here? Implied I suppose is the challenge: okay, what is this relationship you want? How do you describe it? How do you train somebody to do it and make sure they’ve done it?  How do you pay for it? What does it weigh, can it be left outside overnight, is it hazardous, and where’s the danger warning label and two-volume instruction and training manual?

The danger that needs labeling is the presumption that the most important thing of all doesn’t exist because it doesn’t lend itself to engineering principles. The care you give someone in a hospital or anywhere else is based on who that person is and on your wanting them to get better, not on completing a set of tick boxes. It takes a fair bit of focused time, the same person-to-person conversation carried on over days or even weeks, to start to understand someone else’s problems. As soon as we presume otherwise, there’s no reason not to dice human interaction into ever smaller pieces until it just disappears.

As usual with my worries about health care, I can’t avoid the big question: What are we supposed to do about it? And as usual the truth is I don’t know. I do what I can to keep my patients away from the hospital where a relationship-dicing chopping block is the first thing you encounter when you go in the door. I also try to get to know the people I care for, and have humane as opposed to technical conversations with them. But you can’t, at least I can’t, come up with ten commandments for how to get the relationship back into medical care. But there are people, like Dr. Dennis McCullough who advocates for “Slow Medicine”, who are beginning to point the way.

Another humane physician, Dr. Abraham Verghese tells in his novel Cutting for Stone of an examiner who asks a medical student a trick question: What kind of care in an emergency situation is administered by ear? The answer is “words of reassurance”. When we need them most, those words carry their healing power only when they come from someone we know well and trust.

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House Calls 3: When the Doctor Makes a Mistake

I’ve been impressed by (and I’m envious of) some physician authors I’ve read lately, including Abraham Verghese and Nortin Hadler. But I was particularly dazzled by Harvard surgeon Atul Gawande’s book Complications . This was not a confessional about a bunch of blunders, but an exploration of how we in medicine get into trouble and end up doing things that, if we had them to do over, we would do differently. That book described a kind of care that recognizes the patient as the person in charge, and the doctor as professional but human, subject to moods, struggles with relationships, frustration, and (yes) mistakes.

For many years I looked after 78-year-old Inderjit Bhalla at home, where he lived with his daughter. This guy had been a successful engineer both in India and Canada, but lately strokes and heart disease had confined him to his house and interfered with his formerly flawless social demeanor and judgment.

Much as I enjoyed talking Indian food with Mr. Bhalla and his charming daughter, my patient always presented a long string of bitter complaints which I had typically heard, investigated, tried to treat, and ended up concluding there wasn’t much I could do for, many times before. And the urgency and persistence of these complaints varied for reasons I could never understand, sometimes getting really desperate. His neck, for example, was always sore. X-rays and a couple of trips to the emergency room only confirmed my impression of simple degenerative disease of the cervical spine.

The neck pain complaints reached an unprecedented crescendo one November, and every time I saw him and examined him I was struck by “pain magnification behavior”: shouting and grimacing when very little pressure was applied, but apparently unaffected by much harder pressure when he was distracted, kind of thing. Several times I explained to the daughter that I thought her dad’s terrible neck pain was mostly due to psychological distress.

Long story short, two weeks into a holiday I went on they called my replacement physician and another x-ray showed osteomyelitis in the sixth cervical vertebra. Infection in the bone. An unusual, dangerous, difficult-to-treat, and certainly extremely painful condition. Hospital physicians rescued Mr. Bhalla eventually, the problem was treated surgically and with antibiotics, and he recovered.

Another time very late one night I was paged by the husband of Marjorie O’Leary, also age 78. She just didn’t look right, he told me. The background here was that the O’Learys both drank alcohol excessively by every standard, Mrs. O’Leary my patient had insulin-requiring diabetes that was always way out of control, and she also tended to get angry at attempts to discuss the diabetes, alcohol, in fact just about anything. Certainly she had early dementia, and enough severe arthritis to confine her to home, where I visited her.

I tried my best to get Mr. O’Leary to elaborate. Doesn’t look right? Do you mean her color is different? Is she speaking normally? Is she in any distress (short of breath, making like she’s in pain)? Does she seem confused? Have you tried giving her some orange juice? The answers weren’t much help, mostly noncommittal or non sequitur. Finally I asked the real question: Do you want me to come and see her? Well, she just doesn’t look right, was the reply. You know Mr. O’Leary I think she may just have had one too many, probably things will settle down, I said.

The next phone call two hours later was from the emergency room doctor at our city’s major hospital. Mrs. O’Leary had come in by ambulance in full cardiac arrest and they had been unable to revive her.

What I did and didn’t do for these two very difficult people sticks out in my mind, but I have no doubt there have been dozens of other similar situations over my 35 years of practice. Could I have made a difference to Mrs. O’Leary if I’d got in the car and gone and seen her? Would a referral, an earlier x-ray, or a bone scan have identified Mr. Bhalla’s bone infection sooner, and made the treatment easier? Hard to say. But there’s no question that in both these situations I the doctor was wrong.

They say we bury our mistakes. Certainly our malpractice insurers carefully try to keep us from admitting them. But that’s the problem. Of course we’re not perfect, but I think we compound the fault of a mistake, by failing to say we made it. I don’t like that patients and their families rarely know what questions to ask and are afraid of confronting us, but do I ever have a problem with our smugness in hiding behind how complicated things often are, so we don’t have to present ourselves to someone whose mother would still be alive if we had done our job really well, and say so.

With my “Geriatric doctor-in-law” hat on, I saw this another way. My wife’s mum Liz nearly died from a complication of a simple procedure in the hospital last year, and the meeting to discuss what happened, while very polite and serious, was essentially exculpatory. No sincere “sorry”, no admission of fault, no offer of compensation, and a not-very-credible explanation of what happened and why. I was angry for several weeks, and considered making a public fuss to expose the people responsible, with whom I felt embarrassed to be professionally associated.

And then, thinking over what might come of my doing something in the media, I wondered what about if Liz (or my wife, I, one of my kids) needed inspired beyond-the-call care by that community of specialists in the future? I said nothing.

What’s the solution? Be honest! Shoot straight! We are good at what we do, and we shouldn’t mind somebody looking back at the record. Imagine the impact on a worried patient if he knew he could trust me to respect what he really wanted, do my best, and admit my mistakes.

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Dr. Sloan is on Twitter

Whatever the social and psychological consequences may be, I’ve signed up for Twitter today. It’s taken me a while to decide to do this because somehow I associate the facility with kids trying to keep track of one another on their smart phones, and people obsessed with celebrities.

I discover that some of the people (health and care of the elderly journalists, mostly) I elected to “follow” are incredibly prolific, “Tweeting” at least once an hour and bouncing other people’s tweets out to all their followers. I had to delete a couple of them.

Anyway, I’m hoping one of the outcomes of this will be a little more contact with some of the people interested in better care for old people at home, and a chance to reach out more effectively with some of what I’ve got to say myself.

My handle is “drjohnsloan”…

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Further Adventures of the Geriatric Doctor-in-Law 2

Readers of my website will understand that over the last couple of years I’ve had a dose of care of frailty from the consumer’s side, once removed. My wife’s parents, Liz and Nigel (both in their 80s) have become more or less mentally and mobility impaired, more or less at the same time. I can’t believe how very different day-to-day caregiving, decision-making, and facing uncertainty is, from what I’ve been doing for many years: medical care of just the same kind of frail old people.

Through the last many months, my wife Robin and her sisters have been struggling to get Nigel out of a nursing home (see my  other post on that), and then (lately) Liz out of the acute care hospital. It’s easy enough to pull your car up to the front door of such a place, transfer somebody from a wheelchair to the front seat, and drive away. But where are you going to take them?

Both of my in-laws need 24-hour supervision. Dementia and stroke have taken away Nigel’s formerly magnificent judgment. Liz, always practical and determined, is now confused at night and liable to be on the floor, and neither of them is independently safe getting on and off the toilet. To spring them out of institutions, we pretty well had to duplicate at home what the institutions were offering. Minus the ever-changing personnel, hospital-acquired diarrhea, administration that functions like a head severed from its body, noise, smell, rules rules rules, and absolutely terrifying food.

There is a program in our region (Vancouver Coastal) which will partly fund care at home, if the family sets up a corporation and organizes the care. Predictably, you have to get through endless paperwork, along with meetings, phone conferences, and a process of on-the-job learning both for us and for the administrative people who don’t see this program set up all that frequently. It’s frustrating, time-consuming, and it can get expensive. My wife Robin is a plodder, but too many times lately I’ve seen her almost grind to a stop.

But (drum roll) we did it! Three weeks ago, both of our frail elders moved into their adored little house atRobertsCreek. They had renovated it in 1992 preserving the interior of the original rustic cabin built by Liz’s father and brothers in the 1940s. The first few nights were no joke: both of our “residents” up and down, in and out of the bathroom and not always making it in time, and the hired caregiver unhappy and exhausted. But yesterday, Good Friday, the sun shone, Georgia Strait was like a sheet of glass, and Liz and Nigel sat half the afternoon on their patio with family and other visitors, after a string of two or three tolerable quiet nights. Sunshiners.

For years I’ve been, I see in retrospect, a self-righteous cheerleader for keeping frail old people at home, so now I get to practice what I’ve been preaching. It’s easy to look down your nose at adult children whose priorities are preserving their inheritance and avoiding the inconvenience of care. But counting on the proceeds of the sale of the family home to get your kids through school or retire yourself, and needing to have a life in the face of the challenges of late middle age can’t just be ignored. I’ve got rid of some of the creeping sense of hypocrisy I used to experience advising patients and families about running necessary risks, living with mistakes, facing problems you can’t handle, and having dozens of questions that never quite get answered.

Okay, I get that Robin’s family has the physical setup, expertise on hand, and to some extent the money to do all this. Not everybody has the same kind of opportunity. What about an elderly person with no family or friends? Or no money? What about families far away, in conflict, overwhelmed with their own problems, or just not interested? “The system” is full of holes. Only once we can reliably promise a lonely disabled person what she wants and needs, including a safe and comfortable death at home, will we have a public care of frailty we can be proud of. But with little tentative steps I think we’re headed in the right direction.

As I’ve told patients and audiences a hundred times, frailty consists of a downhill slide, punctuated by unpredictable crises. Caregiver suddenly quits, old person falls and can’t get up, breathlessness develops at night, opinions radically and angrily differ over what to do. Liz and Nigel will get sick or more confused at inconvenient times, need to have their medication changed and then changed again, and eventually they will die, probably leaving us with lingering worries about whether we did everything we could. But based on their preference that’s going to happen at home. It was pretty satisfying yesterday to sit with them in the sunshine. Looking back I guess we will be glad we didn’t have to snap an institutional hatch over the end of their lives, and that we did for them what they did for my wife and her sisters: loved them and kept them comfortable and safe when they couldn’t do it for themselves.

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House Calls 2

For a several years I was family doctor to a lady I’ll call June Cunningham, who lived in an expensive private assisted living facility. June was an American Pollyanna of the frontier persuasion who would usually say something like, “Doctor, are you? I’m perfectly okay. Nothing wrong with me at all. Go find somebody who’s sick.”

But this dear lady was not okay. Dementia had caused her to think she was inChicago, to believe it was 1968, and to need to be re-introduced to me each time I visited. She got frightened and shouted, especially at night, and I had no choice but to give her some sedating medication at bedtime (on this topic, I respectfully ask you to have a look at the diatribe on my website).

June Cunningham’s other big trouble was that she fell all the time. She was stiff and awkward on her feet from bad Parkinson’s disease. Sadly, her dementia dulled the memory of that, so nothing we said to her could stop her from getting out of her chair, and falling on her face at the drop of a hat. Out of bed, in her room, in the hallway, getting up in the dining room, in the bathroom, you name it. How many times this week? Doctor, we’ve lost count.

Somehow she never got badly hurt (okay so she looked like she had just gone five rounds on Impact Wrestling) until one afternoon she whacked her neck tumbling backwards in the doorway of her room. The emergency room x-ray showed a break all the way through the little bone that connects the first and second vertebrae (which we call C1 and C2) just under the skull. This tiny important bone keeps those two spool-like spinal segments from sliding back and forth against one another, so they don’t slice off the spinal cord like a paper cutter, or at least squash it. Messages telling the lungs to breathe pass down the cord at that high spinal level, so if you cut the cord at C2 there’s no message, no breathing, and an alive helpless person in the terror of not enough air until she loses consciousness, and then dies. Four to six minutes to brain death and around eight minutes to cardiac arrest, we’re told.

The consulting spinal surgeon at the hospital was reasonable. He understood my patient couldn’t survive an operation to fix the bone, and thought there was a good chance the soft tissue around the spinal cord would harden up if we sent her home with a neck collar for maybe two or three months. As long as she didn’t fall again. I was happy with that and so was her family.

Trouble was, Mrs. Cunningham’s injury hadn’t changed her enthusiasm for jumping up and doing things, and for sure it hadn’t improved her insight into what would happen if she fell. I mean there wasn’t any choice: if we didn’t strap her into her wheelchair, within 24 hours she would drag herself up out of her wheelchair, fall, transect her spinal cord, and die a five-or-six-minute terrifying death.

What happens next is an illustration of how big healthcare organizations focus on safety, or to put it in their terms “risk management”. I wrote a doctor’s order in the chart: “RESTRAIN IN CHAIR 24/7”.  Ten minutes later I got a phone call from the nursing home administrator telling me they couldn’t do that. It was against the policy of their international organization to restrain anyone.

Let me put this in perspective. Nursing homes here and in theUnited Statesin the middle of the 20th century were variable in their quality. The worst ones were stinking cash cows in which disabled old people were drugged, tied in chairs, straitjacketed in bed, and fed dog food. So rules were made in response to public outcry, which stopped a lot of that kind of abuse. But then human nature took hold and administrators, insurance companies, and facility owners got the message that they had better not be caught dead using drugs or physical restraint on old people, and these prohibitions were written into facility policies and procedures. Absolutely forbidden. No matter what.

Never mind that forming a relationship with an old person and their family, trying to understand and meet their odd personal wishes and needs, doing the daily detailed kindnesses that would make their life in an institution tolerable, and observing what we call common sense are what the best care in nursing homes consists of, this prohibition of restraint and drugs was about an insurer being able to point to rules on paper when crabby relatives were unhappy and lawyered up.

Back to Mrs. Cunningham. I wrote a short letter to the administrators. Here is your choice: restrain her, or accept responsibility for her terrifying death. I don’t know whether this got flashed to the office inAtlanta, the insurance company, its lawyers, and back down again, but I can tell you that within 24 hours the facility had that seatbelt on June’s chair.

My dear old patient died of pneumonia about eight months later, after careful and emotional consideration by her daughter to withhold antibiotics and keep her comfortable with morphine.

Is the moral of the story that rules are made to be broken? But this is a delicate balance, isn’t it? Imagine a world with no rules, and then a world with nothing but rules. While we’re on the subject, imagine ideas that oppose one another while both of them are indispensable to life as we know it. Like (in healthcare) Access to Information and Privacy. Another set of ideological opposed ideas (and this is the one active in June Cunningham’s situation) is Safety and Freedom. Thing about these important pairs of ideas is we all dearly respect and value both of them. We make huge efforts and sacrifices to be safe, and also to be free. We want information to be private but we want our doctors to be able to find it in an emergency.

Here’s my take on this. When you face difficult situations, if your heart is in the right place (not quite sure how we define that) most of the time you can find your way. Of course we can’t escape from having rules, and the pendulum of public opinion swinging one way or another. But in each individual situation we depend on people meaning well and being reasonable with one another. I’ve read ethics and law philosophers on this subject, and I don’t find any conclusion. In a crisis, give me sincere people and their instincts over rules based on interest or ideology. Anyway, we made it work for old June Cunningham.

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I’m Blogging for the Vancouver Province

Thanks to the kindness of Vancouver Province editors Ros Guggi and Erik Rolfsen, I’ve been invited to provide posts for the Province blog on my favorite topic of home care for the elderly. I plan to continue to post right here on Sunshiners.ca, and I think for now I will usually post both here and in the Province, but will always at least reference Province posts on this blog. I think you can have a look at my posts for the Province here.

I made an introductory post this past March 18, and will be trying to provide a post of one kind or another most weeks.

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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”.

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 most 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 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 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 say what kind of idiot 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 little 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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Globaloney

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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