Walking down the hallway to my next appointment, I thought about how quickly people absorb the messages we don’t even realize we’re sending, much like the teenager whose mother tells him to always stop at stop signs but rolls through them herself when in a hurry. It’s been well documented for years that we teach our learners how and when not to care for patients via a similar hidden curriculum.
It’s easier in many ways to teach medical science without knowing much about the patient as a unique human being and without expectations of feelings for them. The patients in case discussions work well as abstractions or generics, more or less interchangeable vessels for the pathophysiology new doctors must master. We can focus just on the lungs or the blood tests or the remarkable images that now pop instantly onto our screens. We can pretend that medicine is about diseases and organs rather than people and lives. We can divorce learning from caring.
Alternatively, we can take just a few seconds to recognize the human facts of the situation, letting our learners know with facial expressions and brief words of compassion, horror, and concern that it’s natural—and, better yet, desirable—for doctors to feel sad when their patients are suffering. When we don’t—when students are expected to read about a small boy who can’t breathe and think only about the child’s lung function—we teach them that being a doctor means not responding to distress in normal ways, including, I fear, not caring.
Empathy is feeling for the other. You might think it can’t be faked, but in studies, medical trainees and doctors given words and gestures associated with true empathy8 created a pseudo-empathy that was perceived by patients as real empathy. Patients felt better when their clinicians faked it. And students who faked it became more empathetic. But mostly training makes doctors less empathetic.9 This makes me wonder: What if we rewarded people and health systems for putting patients first? What if we trained them to care? If you care, you’d want to be the best doctor you could be and have the best motivation for learning, whereas knowledge alone provides no intrinsic incentive to care.
Toward the end of my medical training, I stopped listening to music. I had seen so much in so few years that the world seemed to endlessly leak the sounds of human suffering, and I could not tolerate any more “noise.”
There are so many types of suffering: physical, emotional, existential, financial, social, sexual, spiritual, psychological. That makes me wonder whether disease-focus is the right way to tackle suffering. But maybe relief of suffering, by care or cure, is not the intent of medicine. Maybe I’m confused. Maybe most doctors are primarily interested in disease, and I am the one who cares about suffering. I who look around and see it everywhere, who find it disturbing to a degree that is not infrequently disabling. Or maybe, far more likely in my experience, most doctors do care about suffering but are trained not to, and suppressing their normal human responses both allows them to function as clinicians in our unbalanced health care system and is leading to moral distress that manifests as burnout.
Science works well in settings where variables can be controlled—a petri dish, a laboratory, a data set—although, even there, we sometimes get into trouble. We can control some things about human lives but not all.
It’s this human element—not just for patients but for everyone else, too—that makes medicine more than just science. The scientist works for knowledge, while the doctor works for the patient. This critical distinction is too often forgotten in our current health system. In medicine, the quintessentially human and not easily quantifiable, from illness experience and culture and social situation to political and economic structures, is frequently treated as of lesser or little import. These systematic biases for science over care and for medicine over health are at the root of the structural inequalities and current crisis in health care. With science at the center of medicine’s paradigm, we prioritize things; if we put care at its center instead, our priority will shift to where it should be: people.
Most doctors are familiar with the last lines of Francis Weld Peabody’s essay “The Care of the Patient.” In fact, although written in 1927, his description of the role of the physician is no less apt today:
Disease in man is never exactly the same as disease in an experimental animal, for in man the disease at once affects and is affected by what we call the emotional life (and, I would add, social environment). Thus, the physician who attempts to take care of a patient while he neglects this factor is as unscientific as the investigator who neglects to control all the conditions that may affect his experiment … One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.10
Caring for patients is why I became a doctor. It’s what I still want to spend my time doing, both directly and indirectly. That caring or “provision of what is necessary for the health, welfare, maintenance, and protection” of our fellow citizens and each other can and should be the crux of our health services, training programs, research, and scholarship, because only then will “caring for the patient” take its rightful place at the center of health care and medicine.
A new paradigm must begin with assumptions. Here are ten I’d like to see on the list:
While the terms medicine and health care are often used interchangeably, they are not equivalent.
Health matters more to both individuals and society than medicine.
Medicine and medical science are not the same thing; the latter is one component of the former.
Science is necessary but not sufficient to ensure health or provide health care.
When we make data all that matters, we often count what can be counted rather than what counts (with thanks to Albert Einstein).
Technology creates new problems and questions even as it solves others; to be useful, it requires guiding principles and thoughtful consideration of risks and consequences as well as benefits.
Separating the medical from the human leads to a separation of the medical from the human.
History, with its inherent conservatism and tendency to conform to the self-interest of the powerful, has been science’s partner in shaping our health care system.
As an institution, medicine should prioritize the interests of the people over its own.
The primary goal of medicine is optimization of patient health.
The only drawback to this or any new paradigm is that getting one requires a revolution. Yet, although our current system is failing both doctors and patients, we who are physicians and health system leaders are active contributors to this failure. Most of us are good citizens, company men and women working within the traditional structures of our profession, people who respond to tough challenges by putting our heads together and trying harder, almost always taking the individual and collective approaches11 that justice organizations have shown are ineffective in producing social or cultural change. Doctors take medicine largely as it comes because that’s what we signed up for and what we’re used to. We don’t make waves. We don’t take big risks. We don’t rebel. We say we are evidence-based, but when the evidence says we are failing (The U.S. at thirty-seventh in international rankings! Fifty percent of doctors burned out!), most of us offer innovative interior design when what’s called for is new structural engineering and architecture. That needs to change. A good first step would be to renounce medicine’s twentieth-century paradigm and develop a new one better suited to human needs right now.
Science is a useful tool, but as a framework for optimizing human health, its emphasis is misplaced, with too much emphasis on knowledge, novelty, and the physical, and too little on helpfulness, the already proven, and the human. But if science is out, something else has to be in, and although alternate paradigms have been proposed for years, none have caught on. The biopsychosocial model seems to be a strong candidate, with its equal emphasis on the physical, mental, and social, but somehow its inclusiveness makes it seem diffuse. Also, its moniker has the nails-on-chalkboard effect of jargon.
Humanism seeks to maximize the potential and dignity of all human beings and considers the whole person over the entire life span, but its nontheistic stance limits its widespread application.
The new paradigm needed—from terminology to focus—has been part of medicine at least since the age of Hippocrates, and it comes down to one simple, ancient concept: care.
The “care paradigm” begins with the desired outcome, rather than an approach that may or may not lead to that outcome. It not only can but must include science while the scientific paradigm makes no allowance whatsoever for concepts like care.
Let me put that another way: you can have good medical science without care, but you cannot have good medical care without science. We very much need both—at all ages and stages of life.
CONSEQUENCES
One crisp and sunny fall afternoon after a lecture about old age, a nurse, a social worker, and a physician—all middle-aged women who specialized in the care of older adults—began exchanging stories. The nurse went first, telling the others about a very old woman who wanted a different sort of care from what her doctors were recommending and how the nurse helped her get what she wanted. Instead of scans and surgery and even more time in the hospital, she went home and died there two months later.
“I know I did the right thing,” the nurse concluded, “so I don’t know why I keep feeling guilty and uncertain about it, except that I’m sure her doctors think I killed her.”
The social worker and doctor nodded.
Then the social worker described the final days of a woman in her late eighties with end-stage neurological disease whose frequently articulated wishes had been followed in every detail. She developed an infection that probably would have responded to antibiotics, but the social worker reminded the doctors of the patient’s wishes. They skipped the antibiotics, and the patient died the next week.
The doctor’s story featured a frail elderly man with dementia and heart disease who could no longer shower unassisted, read, watch TV, or follow most conversations. He had made clear to his family that he never wanted to live that way, so when he fell at home and things got worse still, leaving him bedbound in severe pain helped only by painkillers that also dangerously impaired his swallowing, the doctor arranged to put him on hospice.
“His primary care physician wasn’t so sure about that,” she said, exchanging a sympathetic glance with the nurse.
“Oh, they gave me hell,” said the nurse.
“I can’t believe we’re having this conversation,” said the social worker.
The nurse smiled. “Isn’t it great? What a relief.”
“We didn’t kill our parents,” the doctor said. “They died in old age of advanced illness.”
The three of them looked at each other, then smiled and shook their heads.
I can relay this conversation because I was the doctor that day, and because there is a perspective from which one could say I killed my father.
To be clear: I did not commit murder. I broke no laws, committed no moral transgressions, and did not euthanize my father. My discomfort, like my two colleagues’, came not from what we did do but from what we did not do: that is, follow the party line of American medicine that says that if a treatment exists, you should use it. The nurse’s mother should have had her surgically curable tumor removed. The social worker’s mother should have taken antibiotics for her bladder infection. My father should have been given a feeding tube. The problem with this party line is that while it considers the medical problem, it ignores the body and life in which the problem is taking place.
None of the three deaths in this story was extraordinary. Each was a variant of common old age end-of-life scenarios that play out every day for American families. We three, with our decades of experience working with sick old people, had advantages over the average person. We had seen the impact of what Sharon Kaufman has called “ordinary medicine” in old lives.12 And based on years of conversations with our respective parents, we knew their preferences and greatest fears, and could honor their end-of-life wishes when the time came.
The social worker and I knew each other because I’d been her mother’s nursing home doctor years earlier. The two had been close, and the social worker had been a regular at the nursing home, visiting her mom and participating in activities. Seeing her again, I remembered how much I’d liked them both.
Her mother, a lively, funny woman, had developed a progressive and eventually gravely debilitating, undiagnosable neurological disorder. She had been to multiple specialists at both of the top-rated medical centers in our region. Over time, she lost her ability to walk, move, and feed herself. Her brain remained sharp until the last year, and her wishes were clear.
When she developed a bladder infection, the social worker said no to antibiotics and asked for morphine instead to ensure her mother’s comfort. Later that week, her mother died in precisely the way she always said she wanted.
For that final gift of respect and agency and love—for letting nature take its course and honoring her mother’s preferences—her devoted daughter was left feeling like she had done something wrong.
That’s because we live in a world that assumes ill intent and because some families do try to accelerate an older relative’s demise. For some, it’s payback for past abuse. Others want to free themselves of the burden of care, or get at a significant inheritance, or avoid eldercare’s potentially years-long drain of family resources. On the flip side are families who keep a relative alive in order to retain their job as caregiver, pocket the elder’s benefits, keep living in their house or apartment, or avoid dealing with death and feeling orphaned or mortal themselves.
Sometimes the abuse is glaring. More often, there are hard-to-prove suspicions. Without seeing inside someone’s mind, it can be hard to distinguish between a person who says they are respecting their critically ill parent’s wishes from another who is seeing an opportunity for freedom or profit. Similarly, it’s hard to discern whether someone is going to great lengths to keep a loved one alive out of a sense of filial or religious obligation or for secondary gain, all of which can coexist. It’s especially hard to sort out such complexities if you don’t really know the patient and family, and you won’t know them if you are a hospitalist or emergency clinician or consultant or if you think taking a patient’s social history means asking whether or not they smoke and drink.
My mother says the local hospital killed my grandfather. He was admitted and then, when doctors couldn’t find anything specifically wrong, they sent him home. He died in his bed the next day. Not necessarily a bad way to go, well into your eighties with minimal suffering, but my mother resented the doctors’ failure to diagnose whatever it was that was wrong. Up to that point my grandfather had been outgoing and active. He was old but basically fine.
Thirty years later something similar happened to my father, except he hadn’t been outgoing, active, or basically fine for six months, or twelve, or maybe for several years, depending on what you think “basically fine” looks like. One evening, he fell in my parents’ apartment. My mother and a visiting cousin were in the next room when they heard a crash. They got him up, and, though he couldn’t remember what had happened, he seemed okay. They phoned me, and I asked a lot of questions and had him move various parts and decided maybe we’d gotten lucky. The next day, I visited. He wasn’t quite right, nor was he exactly wrong either. Dad had spent an awful lot of time in hospitals in recent years, something he and we wanted to avoid again if at all possible. Almost exactly a year earlier, he’d had a serious fall followed by a surgery that had stripped him of much of his mobility, more of his mind, and almost all of his lifelong sense of humor and pleasure in life.
On the third day, he couldn’t get out of bed. My mother called me, I called for an ambulance, and we reconvened at the medical center. They couldn’t make a diagnosis in the emergency department, but everyone agreed he needed to be admitted.
It was the last week of the residency ye
ar. The senior resident had an apartment and job lined up in another state, and the intern was eager for his ten-day vacation and return to the hospital as a team leader. They were both as well trained as they were going to be that year.
Their workup found nothing. My father seemed okay, but also not, and he couldn’t explain what was wrong.
“We could do more tests,” the intern said. “But we’d be fishing. Nothing points anywhere in particular.”
There didn’t seem to be much point in random scans. There was no fracture or injury we would have treated with surgery after what had happened the previous year. He’d passed the tipping point on the scale of suffering versus rewards; pains outpaced gains.
We took him home the afternoon before the first day of the new interns, those young doctors who had been medical students just weeks earlier. Although my father’s mind had been fairly clear in the morning, by the time the afternoon’s discharge process was complete, he was confused in an unusually lively and articulate way. In the twenty minutes it took us to drive home, he passed through Pittsburgh, Chicago, and Rome. “I’ll be damned,” he said more than once. “I haven’t seen that in years.”
He had become similarly delirious on each of his hospital stays for the previous decade. And as had happened each of those earlier times, once back in my parents’ apartment, his mind cleared.
However, my father couldn’t walk. He got a hospital bed, visiting nurses, and a visiting physical therapist. We pulled the commode out of storage. Also, the bedpan. He was uncomfortable and unhappy, frustrated and angry. When we raised or lowered the bed, he gritted his teeth and lashed out. He screamed in pain but couldn’t say where it hurt. He couldn’t do much physical therapy, even in bed, and nothing else helped either. We checked him, the nurse checked him, we reported our findings and impressions to his doctor. It wasn’t clear what to do.
His doctor made a home visit. He said we could get an X-ray, but he didn’t think there was a good reason to put my father through that. We wouldn’t do surgery, and either way the pain needed to be treated.
Elderhood Page 45