August 23, 2024
Dear Interested Readers,
Have We Lost The Trust Of Our Patients?
Everyone complains about healthcare. I know that I do. My access to healthcare is probably better than for most Americans, but I still find that there are barriers to the timely care that I want for myself and my family. The best example of a lack of timeliness that I can offer from my recent personal experience is that I suffered nerve damage with a loss of sensation and the development of a foot drop while waiting for an op date for my recent back surgery.
There was more than a month of excruciating pain with progressive weakness in my right leg as I waited for “my turn” for back surgery. I was told that my symptoms pushed me forward before others, but the delay was still enough to leave persistent weakness and symptoms. Because of my delayed access to care, I am walking with crutches five months after my surgery. On the upside, my pain is gone, and I can see some gradual improvement although there is still a long way to go and no guarantee of a complete recovery.
From a cost perspective, even though my surgery was delayed, the surgery still cost over $150,000, and I was in the hospital for only two nights. I nearly had a heart attack when Blue Cross initially denied the claim saying that I had not done enough PT before my surgery. There was still more financial grief ahead after the PT issue was settled because Blue Cross and Medicare fought over their individual portions of the bill. My wife spent many hours on multiple frustrating days talking to Blue Cross and Medicare before the issues were settled. She is a persistent person who was a nurse practitioner. I wonder how it goes for many patients who don’t have equally competent family members fighting the system for them.
From the perspective of workforce issues that determine much of the efficiency and effectiveness of healthcare, my surgeon apologized for the delay and complained that part of the problem was a lack of stability in the nursing staff that supported him in the OR. He spent more time in the OR because every time he operated there was a different support team and they did not know his preferences. Every nurse that cared for me during my hospitalization was a “traveling nurse.” I enjoyed hearing about their adventures as traveling nurses, but I believe that the constant instability of staffing affected the potential safety and efficiency of my care.
I feel a little guilty when I think about how my experience demonstrated a lack of healthcare equity. When I realized that I couldn’t get my surgery done as soon as I felt it needed to be done, the staff person to whom I was complaining, and who had the responsibility of managing the scheduling tried to make me feel better by telling me that she had “played my ‘doctor card’” to push me ahead in the line of those waiting for service. In that instance, the defect in equity was to my advantage. Now, I cringe when I think that maybe someone else suffered longer as a result of my “doctor status” pushing me ahead of them among those waiting for relief from a scarce resource.
As I continue to consider my care from the perspective of the “six domains” of quality outlined in Crossing the Quality Chasm (2001) — care that is patient-centered, safe, effective, timely, efficient, and equitable—I realize that the patient-centeredness of my care left something to be desired. When I saw my surgeon, I had a great sense of his concern for me, but that did not always hold true for other staff members who were obviously stretched. There were several times when my call for help did not get much response, or the person responding had little or no knowledge of my issues. The explanation was that they were just “covering” while the person who was primarily responsible for my care was somewhere else.
My outpatient care has been less deficient than my inpatient experience, but there is room for improvement. I waited over a month to get physical therapy after the surgeon referred me. Electronic support from my medical center is good. My local 25-bed “critical access” hospital where I get lab work and have my PT is connected by Epic to the academic medical center where I see my surgeons. I can see my appointments and review my test results in Epic. I can also see that there is little evidence of critical thinking in some of the “notes” which seem to be compilations of billable statements more than a clinically useful document. The system also uses “apps” that guide me through the steps of care before and after surgery. I have faithfully used the apps, but I get no feedback to suggest that anyone ever monitors the questions that the apps ask me. I assume that there are staffing and workforce issues that explain what I observe.
One thing that my experience with the “system” has confirmed for me which I knew already is that the experience of care and the defects in care today drive the need for care in the future. I injured my left knee twice while I was playing college football back in the mid-sixties. I was treated for over a month with a “stovepipe cast” on both occasions. Between my graduation from college in 1967 and 2010, I did a lot of running. My last marathon of many was in 2008 and was complicated by a hamstring injury. In 2010, I was attempting a “marathon comeback” and was training hard which included speed workouts on high school tracks. My “comeback” ended in one stride when my knee was “blown.” I went down in pain as if I was shot. It took a while before I hobbled off the track. After waiting a month for things to heal I consulted an orthopedic surgeon in our practice.
He did the appropriate evaluation including an MRI of my knee. He told me that I had no cartilage and that it looked like at least one of my old football knee injuries had been a tibial plateau fracture. The bottom line was that he recommended a total knee replacement. At the time I was the CEO of our practice, and we were facing significant financial problems in the aftermath of the 2007-8 financial collapse. I was reluctant to take time off for surgery. I asked for “conservative” management. I got a load-shifting brace that cost over $1000 and wasn’t much help plus injections and PT. The PT was helpful, and over the next two years, I gradually regained the ability to “jog” six miles at a slow ten-minute pace. I had no pain. I gradually transitioned to walking and did well even though with my “bowed” knee my pants did not hang straight,
There is wisdom in the old song “Dem Bones.” The head bone is connected to the neck bone. Everything in the body is “connected.” With my post-op limitations from my right foot drop, my left knee has become a big problem. I have pain and much of my current need for crutches comes from my painful left knee. Would my left knee be a problem if my back surgery had gone well? I imagine that with or without the foot drop my left knee may eventually have needed replacement. I am now scheduled for a knee replacement after my granddaughter’s volleyball season is over. It is her senior season at Bowdoin. She is a team captain. I want to be present for as many games as possible. I figure that I will have all winter to recover from my surgery and my next experience of care which I hope will be more patient-centered and efficient. I am scheduled for the first week of December which is well into the future so that my care will not delay the care of any other patient.
In last week’s letter, I reviewed a JAMA opinion piece entitled “Oaths, Conscience, Contracts, and Laws—The Gathering Storm Confronting Medical Professionalism.” coauthored by an old friend, Dr. Patty Gabow, the former CEO of Denver Health. I hope that if you read the letter and if I interpreted the piece correctly, you were left with a heightened awareness of how healthcare is changing rapidly and how hard it is for any one doctor or nurse to do much as an individual to combat the historical realities, the financial dysfunction, and the progression of medicine from a “cottage” industry where physicians had great autonomy to a complex industry where most professionals are employees who have limited control of the practice environment.
As disappointed as I am with the complications of my back surgery, I don’t think what I experienced is the “fault” of my surgeon. Defects in quality are almost always systems issues which is why I was so focused as a CEO on the attempt to use Lean to improve the care of the patients who depended on our practice. What I learned and what I think is even truer today than it was ten years ago when I retired was that much of what compromises the quality of care of any practice or institution comes from external realities that are beyond the control of individuals and also often beyond the control of institutions.
Even though what the individual doctor or nurse might do about the mess we are in from years of neglect of our medical infrastructure, failure to revamp healthcare financing, and inadequate attention to the development of an adequate number of healthcare providers, the first reaction of many aggrieved patients is to be upset with the doctor or nurse in front of them who represents the failing system. I know that I experienced that rath when I was in practice and I must assume that the problem is greater now that I am on the other side of the sheet.
The paper that Dr. Grabow coauthored explains a lot and describes where we are, but it is not heavy on solutions. It ends in a rather gloomy way.
In the current environment, working to recenter medical care around patients’ interests can be difficult or even dangerous, but it is the only path forward if physicians hope to remain a true profession.
As I implied last week, it is my opinion that much of what we call “burnout” could also be categorized as “moral injury.” I first wrote about “moral injury” in 2015. More recently, in July 2023, I returned to the subject. I wonder if my caregivers are frustrated by their reduced professional freedoms. I wonder if their patients blame them for the delays in care, the expense of care, and the frequent ways the institution and some professionals perform in a way that is system-centric and not patient-centric. I wonder if the clinicians who cared for me felt responsible for the failures of the system that Impacted my care. If you are a provider of care, do you just shrug your shoulders and carry on when the system foils what you want for your patient, or do you feel some sense of shared injury?
After reading Dr.Gabow’s article I happened to notice a recently published article in The New England Journal of Medicine written by Barron H. Lerner, M.D., Ph.D. and entitled Medical Expertise — Balancing Science, Values, and Trust. It is an article that looks at how we have lost the trust of so many patients. It points out that without the full trust of most patients that we once enjoyed, what we can do for our patients is significantly compromised. The paper begins with the story of a physician who struggles to convince a patient that the conservative talk radio advice that he has gotten to avoid the COVID-19 vaccine is bad advice. Dr. Lerner summed up the encounter:
At first glance, this physician’s reaction makes sense. He used his expertise — that is, his special skills and knowledge of the topic — to inform his patient’s decision making. But over the past half-century, as was made especially clear by the Covid pandemic, patients have increasingly challenged their physicians’ expertise. Merely providing patients with data and advice has become an inadequate way to disseminate information and promote informed consent.
Dr Learner suggests that we have lost much of the respect and compliance of our patients and then explores and tries to explain how this has happened.
It is helpful to explore this history. How and why did the expertise of physicians — which is also tied into concepts such as authority and trust — get called into question? Although social and political factors have always played a role in determining what constitutes expertise, the growing polarization in American society has led to a crisis in medicine and public health. Rather than assuming that expertise can be restored with better data, we need to understand, in a nonjudgmental way, how patients process both information and misinformation. Such knowledge can help restore the trust that was once the backbone of physician expertise.
He continues with a brief history of how since the formation of the AMA in 1847 to remove “quackery” from medicine, we have gained and then lost our “cultural authority” and the confidence of the patients of America. He believes it has been a downhill slide since the end of the “golden age of American medicine which peaked with the polio vaccines of the 1950s. Things got harder in the 60s and 70s. He writes:
But by the 1960s and 1970s, social movements — civil rights activism, anti–Vietnam War protests, and second-wave feminism — were confronting powerful groups in society. Similar grassroots campaigns would soon challenge medicine. Especially damning was the 1972 revelation that the U.S. Public Health Service had for 40 years studied untreated syphilis in poor Black men in Alabama, even withholding potentially curative antibiotics. Researchers had explicitly deceived the participants, making it impossible for them to give informed consent. This news came as little surprise to critics who believed that the benefits of American medicine were unequally distributed.
Concurrently, feminist activists were rejecting the paternalism of doctors. The book Our Bodies, Ourselves, published in 1971, correctly charged that standard childbirth practices were based not on good science but on patriarchal practices of often uncaring male physicians. Also in the 1970s, women with breast cancer rejected the reflexive use of the disfiguring radical mastectomy. Once again, they demanded to see the data that supported this operation — and there were none. All these accusations directly attacked medical expertise. How could doctors recommend interventions that lacked scientific validity?
The challenge to doctors’ authority reached its zenith during the AIDS epidemic of the 1980s and 1990s. Faced with near-certain death, activists acquired remarkable “lay expertise,” learning the science, often explaining it better than doctors did, fighting for more innovative clinical trials of available medications, and participating in grant-review panels. Despite their lack of medical training, these groups added to scientific knowledge, again democratizing expertise.
That is a sad sequence of disappointing realities that included scientific papers and opinions that were false but provided a financial reward for dishonest doctors, but there was more, and then came the Internet. The Internet was well placed to create more distrust when COVID-19 hit us. I have bolded the “bottom line” of the current reality of the state of trust in doctors of many patients.
The Covid pandemic emerged amidst this environment of skepticism and mistrust… At a time of great political discord, traditional libertarian, anti–public health arguments caught fire in predominantly conservative populations…After all, why would you reflexively trust members of a profession that had omitted to obtain informed consent, relied on tradition instead of the best data, demonstrated racism and sexism, and deliberately falsified information for personal gain?
Dr. Lerner suggests that the difficulties with patient trust that were revealed by the COVID pandemic should cause us to pause and reflect on how trust was lost and how it might be regained. Lerner continues:
Several observers have argued that the best way to do so is to understand patients’ values — that is, what belief systems do patients bring to their medical encounters? To some degree, the rise of the concept of shared decision making, which encourages physicians and patients to devise care plans based on clinical data and patient preferences, is an attempt to bring patients’ values into play. But in an environment where physician expertise is being questioned, a deeper dive into values is warranted…
It is good advice. Following the advice will be hard in the compressed schedules and time-consuming increased requirements for documentation in a system built to maximize revenue. I believe that it is rare to encounter a doctor or a nurse who doesn’t want to spend more time with their patients. It is also rare to find a doctor or nurse who believes that they have the time and flexibility to spend as much time as they would like to spend understanding their patients as a foundation for more patient-centered care. Not having the time to do the job right and realizing that as a result the trust your patient has is diminished is a source of burnout and moral injury.
Dr. Lerner sums it all up at the end of his essay:
Science remains the backbone of medical advice, but learning about patients’ values, both when they agree with recommendations and when they disagree with them, needs to be a component of doctor–patient communication. Respecting patients and gaining their trust should be considered essential skills of physicians.
Patient care has always been challenging even when we had the luxury of most patients’ trust. Learning how to foster patient trust in an environment of scarcity, complexity, misinformation, political division, and uncertainty is a skill that has never been more important and perhaps never more difficult to develop than in the challenging environment that faces today’s providers.
I appreciate the efforts of all my caregivers. The issues that frustrate me are the products of decades of collective failures and missed opportunities exacerbated by political division and mistrust. It is time to extract the lessons that these negative experiences provide us and chart a new course toward the better care that we know we have the expertise and science to provide for everyone.
Joyful, Equitable, Smart, Tough, and Future Focused
When I was a child in Oklahoma and Texas I attended a lot of “revival meetings.” Often the meetings were held in a tent on hot summer nights. If you aren’t familiar with revivals, they were usually a week of church services with an emphasis on renewal, rededication, and recruitment of new “believers.” There were often visiting speakers, and great efforts were made to advertise the event to anyone in the community who was “undecided” about their relationship to God and eternity.
The Democratic National Convention this week has reminded me of the energy of those events. I think that the short speech (13 minutes) of the Reverend Senator Raphael Warnock of Georgia confirmed my sense of “revival” at the DNC and my emotional connection to those “revival meetings” more than sixty summers ago. Early in his speech, Senator Warnock said:
A vote is a kind of prayer for the world we desire for ourselves and for our children. And our prayers are stronger when we pray together…
I got what he was saying. His speech was not a sermon even though he is the senior minister of the Ebenezer Baptist Church of Atlanta where both Martin Luther King, Jr. and his father were once ministers. Near the end of his speech, he scored with me once again (I have bolded the best part) when he said:
I’m convinced tonight that we can heal sick bodies. We can heal the wounds that divide us. We can heal a planet in peril. We can heal the land. And in a strange way, the pandemic taught us how. A contagious airborne disease means that I have a personal stake in the health of my neighbor. If she’s sick, I may get sick also. Her healthcare is good for my health. I’m just trying to tell you that we are as close in our humanity as a cough. I need my neighbor’s children to be okay so that my children will be okay. I need all of my neighbor’s children to be okay. Poor inner city children in Atlanta and poor children of Appalachia. I need the poor children of Israel and the poor children of Gaza. I need Israelis and Palestinians. I need those in the Congo, those in Haiti, those in Ukraine. I need American children on both sides of the track to be okay, because we’re all God’s children. And so let’s stand together. Let’s work together. Let’s organize together. Let’s pray together. Let’s stand together. Let’s heal the land. God bless you. Keep the faith.
The pundits loved the speeches of the Obamas, Oprah, and the Clintons. So did I. I love the choice of Tim Walz as the potential Vice President, His speech was appropriately “coach-like.” It is the fourth quarter of the election (they go on much longer than is necessary). I don’t believe the Democrats are behind. (Coach Walz suggested that the Dems were down by a field goal with a few minutes left on the clock.) I would prefer to think the score is tied and the Democrats have the ball.
One of the most impressive short speeches was an amazing takedown and description of Donald Trump delivered by former Republican Congressman and member of the House Committee on January 6, Adam Kinzinger. He spoke shortly before Vice President Harris’s acceptance speech.
Vice President Harris’s speech was excellent. Her speech was a fitting conclusion to a very pivotal week. She was both forward-looking and able to pivot to the execution of a straightforward review and take-down of Donald Trump. Most importantly, I believe the speech was a reminder of what our nation has been at its best, and how together we could be better in the future. To use a sports metaphor, she was the clean-up hitter who hit the ball out of the park. I look forward to the debate on September 10.
I plan to relax this weekend. After a chilly week, the weatherwoman is predicting clear skies, low humidity, and temps in the high 70s. Perhaps, I will listen to some of the DNC speeches again on YouTube. I holpe that whatever you have planned, your weekend will be like my DNC experience and exceed expectations.
Be well,
Gene
