On Wednesday, October 25, 2017 I was at the inaugural Society for Participatory Medicine conference. It was a fantastic day and the ending keynote was the superb Shannon Brownlee. It was great to catch up with her and I’m grateful that she agreed to let THCB publish her speech. Settle back with a cup of coffee (or as it’s Thanksgiving, perhaps something stronger), and enjoy–Matthew Holt
George Burns once said, the secret to a good sermon is to have a good beginning and a good ending—and to have the two as close together as possible. I think the same is true of final keynotes after a fantastic conference. So I will do my best to begin and end well, and keep the middle to a minimum.
I have two main goals today. First, I want to praise the work you are doing, and set it into a wider context of the radical transformation of health care that has to happen if we want to achieve a system that is accountable to patients and communities, affordable, effective — and universal: everybody in, nobody out.
My second goal is to recruit you. I’m the co-founder of the Right Care Alliance, which is a grassroots movement of patients, doctors, nurses, community organizers dedicated to bringing about a better health system. We have 11 councils and chapters formed or forming in half a dozen cities. I would like nothing more than at the end of this talk, for every one of you to go to www.rightcarealliance.org and sign up.
But first, I want to tell you a bit about why I’m here and what radicalized me. My father, Mick Brownlee, died three years ago this Thanksgiving, and through his various ailments over the course of the previous 30 years, I’ve seen the best of medicine, and the worst.
My father was a sculptor and a scholar, but he was also a stoic, so when he began suffering debilitating headaches in his early 50s, he ignored them, until my stepmother saw him stagger and fall against a wall in the kitchen, clutching his head. She took him to the local emergency room, at a small community hospital in eastern Oregon. This was the 1970s, and the hospital had just bought a new fangled machine—a CT scanner, which showed a mass just behind his left ear. It would turn out to be a very slow growing cancer, a meningioma, that was successfully removed, thanks to the wonders of CT and brain surgery. What a miracle!
Fast forward 15 years, and Mick was prescribed a statin drug for his slightly elevated cholesterol. One day, he was fine. The next he wasn’t, not because his cholesterol had changed, but the cutoff point for statin recommendations had been lowered. Not long after Mick began taking the statin, he began feeling tired and suffering mild chest pain, which was written of as angina. What we didn’t know at the time was the statin was causing his body to destroy his muscles, a side effect called rhabdomyolysis. Even his doctor didn’t recognize his symptoms, because back then, the drug companies hid how often patients suffered this side effect.
The statin caught up with Mick at an exhibit in Seattle of Chinese bronzes, ancient bells and other sculptures that my father had been studying in art books his whole career. Halfway through the exhibit, he told my brother to take him home; he was too tired to take another step.
Three days later, he was in the hospital on dialysis. The rhabdomyolysis had finally begun to destroy his kidneys. Three weeks later, he was sent home alive with one kidney barely functional. Soon his health would begin to deteriorate at a steady pace.
Fast forward another 15 years, and my father, at 84, was frail, falling down repeatedly, intermittently incontinent, and mildly demented. He had been hospitalized several times over the previous decade for a kidney stone, intractable constipation, dizziness, a small stroke. He was sleeping much of the day and was, as he would tell anybody who would listen, ready to die. He would walk into the ocean, if only he could get to the beach. By then, my stepmother had hidden the gun.
Just before Thanksgiving, Mick was taken by my brother to the local hospital with severe abdominal pain, which turned out to be a volvulus, a twist in the gut that if left untreated can lead to sepsis and a painful death. He was whisked off the hospital in Portland, a two-hour ambulance ride away. Knowing how frail Mick was, and how done he was with being hospitalized much less alive, I told my brother to ask the hospitalist for a palliative care consult. My brother did as instructed. The hospitalist said no, he wasn’t going to call in palliative care, because, and I quote, “We’re not there yet.” In that hospitalist’s mind, palliative care was for those at death’s door, and my father was only in the waiting room. You won’t be surprised to learn that nobody asked Mick what he wanted, or what course of care he preferred.
By the time I could leave work and get a flight from DC to Portland, six days later, my father’s various doctors had managed to give him a pre-op cardiac stress test, and put him on total parenteral nutrition, a sort of food that goes straight into the blood stream. Only then did the gastrointestinal surgeon see him and pronounce him unfit for surgery; Mick was obviously so frail he would likely die on the table or if he survived the surgery, he would spend the rest of his short life in a nursing home.
Finally, we got our palliative care consult, which allowed us to take Mick home, where he was able to die surrounded by his beloved collection of art and his family.
I suspect that each of you has experienced some aspect of my tale. We all have stories of being misdiagnosed, ignored, not listened to, and maybe most important of all, not being heard. Of having to fight to get the comfort your child, father, sister needed. We’ve all had to seek out the right care, and be vigilant to avoid the wrong care, too little or too much care. Which probably should not even be called care at all, since if it’s unnecessary, it’s not very caring.
Anatole Broyard, an editor at the New York Times, wrote about the patient’s plight in a brilliant essay he published in August, 1990, 3 months before he died of prostate cancer. He wrote, “To most physicians, my illness is a routine incident in their rounds. For me it’s the crisis of my life. . . I would feel better if I had a doctor who, at least, perceived this incongruity.”Later in the essay he says, “I just wish my doctor would brood on my situation for even five minutes, that he would give me his whole mind just once. I’d like my doctor to scan me, to grope for my spirit as well as my prostate. “
What Broyard so eloquently expressed can be summed up as a crisis of relationship—a fracturing of the therapeutic alliance that we know is essential to offering comfort to patients, but is also part of healing. We all know implicitly, that healing involves far more than the physician’s knowledge and skill. It is more than making a correct diagnosis and delivering the right treatment.
True healing, as journalist David Bornstein writes, “is the process by which a doctor helps a patient accept, recover from, adapt to, or endure a serious illness, and it is full of nuance and mystery. . . I was often moved by how much my father-in-law — an actor who died from a form of leukemia — drew comfort and even inspiration from the relationship he had with his hematologist (who requested a Shakespeare recitation at each visit).”
Or as my colleague Vikas Saini says, hope and healing come from the companionship between doctor and patient in facing an unknown future together. The therapeutic alliance is a two way street, whose destruction also harms those who sit on the other side of the stethoscope — you in the white coats, you have stories, too.
Of being burned out, and chewed up by the system. Nearly half of medical students report feelings of depression, burn out, cynicism. Medical education has been characterized as being akin to living in an abusive and neglectful family. It places unrealistic expectations on students, keeps them sleep-deprived, overstressed, hypercompetitive, and in a state of fear of making mistakes. It sends a message that doubts or grief should be kept to oneself.
Worse yet, young clinicians perceive the gap between what is formally espoused — the proclaimed ethic of medicine’s empathy, compassion and altruism — and what they are actually learning through the “hidden curriculum.” This hidden curriculum is the socialization process that increasingly teaches them detachment rather than connection. The hidden curriculum says money is what matters in the system. The hidden curriculum instructs young clinicians to see patients as “customers,” and to view the doctors with the biggest incomes as the happiest and most admirable. It is even teaching residents to do rounds at the hospital by standing in the hallway looking at their laptops rather than gathering at the patient’s bedside.
What the explicit and hidden curricula are not doing is teaching young nurses and doctors to listen without interrupting much less share decisions. Young clinicians are not even learning the ancient and powerful art of taking a history and physical. The novelist and physician Abraham Verghese is doing a booming business at Stanford medical school running remedial courses for young doctors who are coming to their residencies without those essential skills.
So how can we expect such an education system teach clinicians to “perceive the incongruity” of what it means to be sick versus well? Or to take five minutes to “brood” on their patients’ situation?
It should come as no surprise that five out of six doctors say that medicine is in decline. Close to 60 percent would not recommend it as a career for their children.
And as the work speeds up, and clinicians are treated more like assembly line workers than healing professionals, there is less and less time to grope for the spirit of a patient, to serve as a companion in the face of an uncertain future. There’s no time for such niceties when “productivity” is measured as throughput of patients, and when burnout has reached fever pitch.
What all of this means is the topics of today’s meeting strike at the emotional and spiritual heart of what it means to be a doctor, or nurse, or physicians assistant. This gathering also speaks to the deep need of a patient or family member to be heard, and to be cared for as fellow human being who is suffering.
And what you are all doing today, those of you who have spoken before me or are sitting in the audience, Randi Oster, Geri Baumblatt, Tom Delbanco, Harlan Kumholz, and all of the researchers and physicians and patients who have been laboring in these fields for so many years — every single one of you deserves a medal for making these deep and important issues rise to the surface. For giving a voice to patients — and likewise to the clinicians who care about them as well as for them.
And yet . . . here we are today, struggling to make those voices be heard by our colleagues, by our regulators, and our politicians.
Why has it been so hard to get Tom Delbanco’s Open Notes implemented? Why doesn’t every medical and nursing school in the country teach real history taking? How is it that shared decision making has been an idea whose time has been coming—for more than 20 years? Why doesn’t every medical and nursing school in the country teach shared decision-making? Hundreds of studies, thousands of decision aids later, and we know that shared decision-making is a vast improvement over the misinformed consent that so often occurs. Why are these ideas still lurking at the fringes of medicine?
Why do so few hospitals have family advisory councils, and even fewer have councils with real power? Dig even deeper, and we should also be asking why so few communities have any real say in how hospitals allocate resources.
Where I live, in Washington, DC, three hospitals already have a proton beam machine. A fourth is being built. Each one of these machines costs $100 million— and each one is unnecessary. They get built not because they will benefit the DC community, but because they are good for the hospital’s bottom line. And if shared decision-making were actually practiced, and adult patients were actually informed of the fact that there’s no valid evidence to suggest that their cancer will be helped by using this incredibly expensive machine compared with standard therapy, there would be no reason to build another one.
The building of more proton beam machines holds a good part of the answer to why shared decision-making, and family advisory councils, and Open Notes, are not standard practice in every hospital and clinic in the country. And that answer points to the two reasons there are no community advisory councils to prevent every hospital in the country from wasting $100 million on a useless machine.
Those reasons are money and power.
As individual patients, we don’t have much power. It is incredibly hard to advocate for ourselves. Even doctors who become patients find themselves feeling nearly powerless in the face of their fellow white coats.
This idea that the patient/consumer is going to change the system, one transaction at a time, has become part of our national religion of the free market, and the neoliberal catechism we’ve all been absorbing for the last 40 years. That doctrine says that patients can fix the system — if only they would behave the way they do when purchasing other goods. High deductibles will make sick people and their frightened families more “prudent consumers” of health care, and when all those prudent consumers begin to vote with their wallets, the system will be transformed.
Right. How’s that been working out so far?
Here’s an alternative. There’s only so much we can do as individuals, especially when we are sick enough to be under a doctor’s care. Maybe it’s time to think about a different “theory of change.” Maybe it’s time to stop pretending the “market” will fix health care, and start recognizing that we have to pursue a different path. We need collective action.
This December, it will have been 62 years since a seamstress named Rosa Parks refused to give up her seat on a bus. Her refusal and subsequent arrest is just one of many iconic acts of defiance that have come to symbolize the civil rights movement. That movement is ongoing and its business is unfinished, as recent events in Ferguson, Staten Island, and around the country are making clear. But think back to the 1950s and 60s. What an extraordinary distance we’ve come because of collective action by the civil rights movement.
It’s tempting to imagine that all of what has happened since that December day in Montgomery was triggered by a seamstress who was tired and fed up and decided on the spur of the moment to sit in the front of the bus. But that’s not really what happened.
Rosa Parks’ pivotal act of defiance was carefully planned, and it was preceded by years of grassroots organizing that came before. In the first half of the twentieth century, African Americans and their allies mostly fought discrimination through litigation and lobbying, and they set important legal precedents. Yet victories in the courts and legislatures were not enough to change a deeply entrenched culture, and the dream of civil rights only began to make real headway when the activists shifted tactics to real movement building and organizing.
And that organizing began not with a pivotal moment on a bus, but in the black churches. It began when people talked about the lived experience of racism. It was in those churches that people began forming the bonds that made them brave enough to register to vote in the face of police intimidation. Those relationships gave them the courage to face down dogs, and water cannons, and imprisonment for their cause.
It was grassroots organizing that created the bus boycott that followed Rosa Parks’ arrest, and organizing that brought white students from the North to register black voters, and to join marches. It was the endless press releases sent by organizers that made those marchers impossible for the world and the White House and the U.S. Congress to ignore. If the civil rights movement had stayed in the churches and not moved to the next phase, of organizing and mobilizing, just imagine what our world would be like today.
Make no mistake, what we are doing at this meeting serves the same purpose as the years of discussion that happened in the black churches before the movement truly began. But now it is time to consider the next step for our cause, which is real organizing and mobilizing.
Getting shared decision making standard of care, fostering a true therapeutic relationship, giving patients control over their own records and communities control over their hospitals are not technical problems, with technical solutions. They are natural outgrowths from a health care system that has become another business, and a powerful one—one that does not want to change.
In other words, this is a fight about money and power, and in the history of the world, very few people and virtually no institutions have given up either willingly just because it’s the right thing to do. Maybe George Washington really did refuse to become King of America because he believed so fervently in the experiment of democracy. But he is the exception that proves the rule. To change the flow of money and power, we the people must take them.
We need a real movement. A movement that is willing to break glass, step on toes, and picket hospitals to force the deep change that is necessary. Health care needs a Rosa Parks moment.
So here comes my pitch to join the Right Care Alliance. We are just beginning to build our ranks of providers, patients, lawyers and community activists. Our steering committee has started to lay out our strategy for the coming years.
But I have to be honest: We are hardly the only grassroots healthcare movement out there. You can join the National Physicians Alliance, or one of the single payer organizations that exist in every state. It almost doesn’t matter which group you get involved with, because we are eventually going to have to come together to pool our efforts. And our first step will need to involve going into communities and helping Americans understand how bad our health care system really is and what it will take to have a great system. For those of us who are old enough to remember the 60s, you’ll know what I’m talking about when I say we need a strategy for teach ins across the land. Every one of you can be involved in that effort.
Getting to a system that opens the door to patients being active participants can no longer be left to the health care industry, or even to health care professionals. And it cannot be accomplished by patients acting as individual “consumers” in the clinic and hospital. The demand for change must come from the American people, from students, workers, community activists, business leaders, the clergy — and clinicians and patients, all those who are affected by health care’s failure to deliver.
In closing, I want to pay homage to the incredible work that all of you have done. You are testifying to the lived reality of the need for care that makes patients and families true participants. But to achieve our goals, we must take the next step towards activism and organizing.