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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