They don’t expect to see [blank] patients doing well

blank signThis post quotes extensively from a Health Affairs article on how acute care training influences physician views of chronic disease patients.

The author starts out with the stories of two patients and the stories physicians bring to the helping relationship.

Martin is one of the few patients I remember who could make a three-hour treatment session at our hemodialysis unit last all day. With his advanced kidney failure, Martin—and the rest of my patients in the dialysis unit—couldn’t survive without the thrice-weekly sessions of hemodialysis that filter out harmful wastes and extra fluids from the bloodstream. Most people would try to get in and out as quickly as possible, but after years of the treatment, Martin was still coming early and staying late. He would let his fellow patients get started on their dialysis machines first while he went around greeting them. At the end of his own treatment, he’d welcome the next set of patients before heading downstairs to go home to his family. Slim and athletic, he was in generally good health other than his kidney disease.

Another patient, James, also arrived early to his hemodialysis appointment, but that was because he arrived via ambulance, on a stretcher. James had been a talented athlete when he was younger, but heart and kidney problems and advancing age had sapped his strength. The burly young ambulance drivers who lifted him in and out of their vehicle barely had to work at all, as James was skeletally thin, his limbs too frail to support him. The clinic staff greeted him and checked his logs from the nursing home where he’d been living since his last fall. When they asked him to confirm whether his name was James, he would say “yes,” and then fall silent again. He curled onto his side in the dialysis chair, trying to shift his weight off of his sore hip bones, unable to move without help. In that fetal position, James endured the three-hour treatment quietly and, at the end, was rolled away again.

I had admitted James to the hospital many times. Each time, the medical residents took care of him. Later, I would read over their notes and discharge summaries from his hospital stays. At least half of the medical trainees in our hospital had, at one time or another, taken care of James for his pressure ulcers, his failing heart, his pneumonias and infections, or his repeated strokes.

The residents knew James very well. But they had never met Martin. As one of my healthiest patients, Martin had never been admitted to the hospital. To the residents at the hospital, and indeed to most physicians, a dialysis patient looks like James, not Martin. But in my work as a nephrologist, dialysis patients look like Martin, not James. The gulf between the residents’ understanding of chronic disease and mine has, I believe, profound implications for the care of such patients and the policies we craft around them. I saw that clearly when my healthiest dialysis patient suddenly fell very ill.

meet them where they are atThe author goes on to illuminate how acute care practitioners tend to encounter chronically ill patients and how it fosters pessimism, despair and frustration. When she got to work in a chronic care setting, it completely changed her narrative.

As a new nephrologist, I didn’t expect my work at the dialysis unit to be especially interesting or fulfilling. During my own general medical training, I preferred the urgent, fixable problems of the hospital. Kidney failure wasn’t one of those fixable problems, and, as an intern and resident, I admitted many sickly patients like James to the hospital with a growing sense of futility.

Much to my surprise, the dialysis unit soon became my favorite place to work, in part because of people like Martin. I saw men and women who had adapted to chronic illness, whose lives were changed by illness but not subsumed by it. I got to know them better than I had ever had an opportunity to know my patients before. I learned their life stories, celebrated birthdays with them, and watched them do more than just survive.

Before I started working at the dialysis unit, I had never met a dialysis patient who spent most of his life outside the hospital rather than in it. Now I was responsible for many patients who rarely saw the inside of a hospital, and I began to recognize a completely different side of this disease.

beware of pity by shawnzrossi

beware of pity by shawnzrossi

Martin passed away suddenly and the author saw a stark contrast in her reaction (informed by her chronic care experience) and the reactions of her peers who operated from an acute care model.

The medical team did talk about him, afterward. We reviewed the symptoms, the workup, the tests. The heart specialist discussing the case was philosophical, explaining to the residents that there was nothing more we could have done. After all, he explained, dialysis patients don’t have strong hearts. They don’t do well with cardiac issues. They don’t survive as long as people with normal kidney function after a heart attack. They have recurrent heart disease. I myself was all too well aware of the statistics for dialysis patients with heart disease. Everything he said was entirely true.

I saw the students and residents nodding in acceptance and agreement. They had seen this before, over and over again, even in their short exposure to internal medicine. Dialysis patients don’t do well, the group silently concluded. Everyone shuffled away, to continue their day.

I sat in the conference room, feeling utterly alone in my sense of sorrow. Why did it seem I was the only one who found Martin’s death so difficult to accept? Why did the residents accept the facts so easily?

I thought about a few revealing interactions I had with physicians-in-training regarding my dialysis patients over the years. The ophthalmologist who saw one of my favorite older patients, an avid reader and the patriarch of a warm and loving family, when cataracts were impairing his vision, said in an off-hand comment, “What a terrible way to live. Does he really want to go through a surgery?” The emergency department (ED) resident who recognized my phone number when I called the ED asked, in a bored voice, “Which of your hopeless cases is it today?” The medical intern who, after knowing one of my patients for less than twenty-four hours during an acute hospitalization for a treatable pneumonia, suggested that we should consider less aggressive care and perhaps withdrawal of life support—after all, the patient had kidney failure. These physicians had worked at many different hospitals and clinics but had never been to the outpatient dialysis unit. They only knew the apparent futility of caring for the sickest, repeatedly hospitalized dialysis patients they saw during their inpatient medical training. Patients like James. They had little hope or expectation of making these patients better.

It’s not their fault: Medical training is heavily skewed toward acute, inpatient hospital experiences rather than chronic care. When the average resident goes on to become a primary care physician, a cardiologist, a hospital administrator, or a policy maker, their impressions of the dialysis patients I care for persist from their in-hospital training days. They don’t expect to see a dialysis patient doing well.

How does this play out in addiction care?

How often do helpers just expect death? How often do they frame death as an end to suffering?

Does this imply pity and, if so, what does that do to the relationship? To the patient’s hope and motivation?

How often does that lead to premature palliative care for patients who have plenty of life–high quality life–left in them?

To me, a bigger question is, how they would treat a loved one with that chronic condition?

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One response to “They don’t expect to see [blank] patients doing well

  1. Michael Gossop describes something he calls ‘the clinical fallacy’ which can give clinicians low aspirations for their addiction patients in specialist settings. The folk who make good progress in recovery will often move out of services while the people with addiction severity and frequent relapses either stay in treatment or cycle in and out in crisis. Over time, professionals who don’t see clients in healthy long term recovery begin to believe that people don’t recover and of course if the professional doesn’t believe it, then it progress for their clients is less likely.

    Thanks for posting this: I found it oddly moving and very illuminating.