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 dang 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 kind 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 quite 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 decades of my arrogance and greed. But that bad performance is mine. I didn’t arrogate it, or any of the good I watch 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 working 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 be a rare scenario 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. 8.7/9.3

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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.

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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Another video…

Click here to see John Sloan reemphasizing the mismatch between critical care and the frail elderly.

 

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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 in 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 else 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 the problem. Still she was complaining she couldn’t get her breath and 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 through the emergency room’s automatic sliding glass door.

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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