Letter From My Mother’s Doctor After Her Death: On Knowing the Patient

I came across a letter written by my mother’s physician after her death, post-stroke, and post pulmonary embolism while being med-evaced by air to Seattle (and the ensuing drama and heartache while unexpectedly on the ground in Bismarck, ND, where she died). He was her primary care physician for 27 years. His technical expertise and deep compassion exemplify the best that medicine has to offer. The letter and my mom’s death were in 2001, so seeing the letter took me back.

In the letter, he expressed not only his own sorrow, but a deep knowledge of my mother and her personality, intelligence, quirks, and values. In the letter, he expressed deep empathy with the decision to discontinue life support. He knew that this was what she wanted in a circumstance of medical futility, as expressed in her advance directive (Living will). I came across situations that were virtually identical in my years as Chief of the Clinical Ethics Consult Service at one of the Seattle hospitals. Never, though, did I encounter a situation where a physician was so empathetically tuned into the deepest values of the patient, or expressed such a profound knowledge of the patient’s deepest hopes and wishes.

Can this happen 17 years later in the era of 10-15 minute visits? One study showed that the actual median face to face time in family practice is 6 minutes. Is it possible to really know a patient in the way that Mitch knew my mother? Many of the technical details in medicine advance. A comment that I frequently hear in the corridors of the School of Medicine, and in our teaching hospitals (and at Grand Rounds) is “I want to get to know my patients better, but the rushed visits, and all the attention needed for the electronic health record make it impossible.”

The letter also made me think of the importance of continuity of care. Mitch knew my mother and saw her transition from middle age to whatever you want to call the next stage. It happens over a quarter of a century. Repeated visits allowed Mitch to get to know my mom. There was time to chat. And, in addition to providing health care, he also provided caring. He cared.

He wrote the letter not because he and I developed a casual acquaintance over the years, but to say “your mother was a fiercely independent, and a strong woman. She valued her dignity. Keeping her alive in the ICU in a situation that was dire is the opposite of what she wanted. It was not who she was.” And he expressed empathy with me—relating this to deaths of his own parents and his reactions.

I fear that medicine has few opportunities for this sort of interaction now. And seeing that letter makes me feel deeply touched by the humanistic values that this extraordinary individual held dear in his practice.

I am about to have lunch with one of my closer friends—a retired professor of neurosurgery. He has always expressed strong opinions. One of them is that medical students should first be selected on the basis of their values, personalities, life experiences, and empathy. Only then should the grades and MCAT scores be revealed. His strong voice was always drowned out by those expressing the more conventional views. I believe that he is correct.

 

 

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Posted in End of life, narrative, Patient-physician relationship, personal accounts | Leave a comment

Pain, the patient, and the goals of medicine

By:Jonathan Mayer, Univ of Washington

I came across a study yesterday that at first stunned me in its conclusions until I gave it deeper thought. The study aimed to ascertain whether the goals of physicians and patients were the same for pain management in a primary care practice. To my surprise, they were not. What are the broader implications?

This was a small study in a primary care residency practice (citation at end of entry). The visits were for chronic musculoskeletal pain. The top goal for patients was pain reduction. The top two goals for the physicians was restoration of function (back to work, etc), and minimization of medication side effects. In other words, patients and physicians were working at cross purposes, and may not have been communicating these purposes to each other.

This kind of study begs replication in multiple settings. In pain medicine, the field is loaded right now because of opioids and the arguments, legal scrutiny, and public scrutiny surrounding their use. As such, the findings here may only be applicable to pain medicine.

What is going on here, though? Patients want to minimize their suffering. The familiar Loeser model (what I call the “Loeser onion”) posits that nociception leads to pain which leads to suffering which leads to pain behavior, though not inevitably. Regardless, suffering is part of the pain nexus. The physicians, on the other hand, did not have reduction of suffering as a top priority. Rather, they were making a social judgment: get back to work, or whatever your appropriate social function is, and with minimal disruption from medication. This is truly a conflict. Are physicians 1) supposed to be in a position of making these social judgments? 2) are they trained to do this? 3) is it not true that the loyalty–the responsibility–of the physician is to the patient, as medical ethics teaches us? There is a real disconnect here–a tension that needs resolution.

This makes me wonder whether much of the turmoil in pain medicine and related fields between clinician and patient may be over conflicting and unstated goals?

This caused me to recall a classic book by physician/medical ethicist Eric Cassell, The Nature of Suffering and the Goals of Medicine, published originally in 1991. In it, Cassell explores the whole realm of suffering as one of the fundamental foci of medicine, and reduction of suffering in the face of disease as a fundamental goal. As he prefaces the second edition, “The test of a system of medicine should be its adequacy in the face of suffering; this book starts from the premise that modern medicine fails this test.”

I suspect that the residents in the clinic study would be quick to state that of course they wish to help patients reduce their suffering. Somehow, though, this goal got lost in the midst of the social pressures to have patients get back to work and restore function. A more nuanced understanding of the patient would have the clinician discover from the patient what the patient’s priorities are, and then help to realize those priorities. This is not to say that the clinician should necessarily go along with every therapeutic desire. A patient might say “I want 100 mg of morphine to minimize suffering” yet the physician might think that this conflicts with his or her own interpretation of the best path to reach less suffering. That is where professional judgment comes in. But in the actual goal setting, I argue that the patient-centered approach should be dominant. The patient is a client who hires the physician to be a partner in bettering his or her own life to reach goals. Should the clinician be the one setting life priorities? Has the patient ceded this to the clinician? I don’t think so.

Thee are some of the reflections that I had upon reading this paper. The results may be aberrant and very different than other studies assessing patient-phsycian goals in pain medicine. This is enough, though, to be concerning. Clinicians do not set life priorities, nor should they.

Henry G, Bell RA, Fenton RL. Goals of pain management: do patients and primary physicians agree and does it matter? Clinical Journal of Pain 1017;33(11):955-961

Posted in goals of medicine, medical ethics, Pain, suffering | Leave a comment

Narratives of medicine or medical narratives?

I have long been fascinated by stories of and from medicine,  and medicine’s patients. This fascination has been since childhood, really, with a respite in late high school and college. Now, I have been writing some of those myself. Regularly, and sometimes virtually nonstop. They are all recollections that I have had in various encounters that I have had in and around medicine.

I have been on the edge of medicine since graduate school, in ways that few others have done. I’ve had a mixture of conscious and unconscious motives. It’s partly wanting to help, and partly a fascination, and partly a desire for close contact with patients, And I realized that there’s a place for somebody like me–somebody not right in the system, but somebody not outside of it either. Somebody who sees the good and the bad, with very little hidden, but can set it in context–including the professional context of public health. I’ve spent hundreds of hours if not more in operating rooms, and more in emergency departments. Hundreds heading up the clinical ethics consult service at a local hospital, and I don’t know how many riding the paramedic units in Seattle for my first large research project. I’ve walked the slums in Accra, Ghana, with some special people, helping as we could, spending time in clinic there, spending some time on the AIDS ward just as antiretroviral treatment was first introduced. I’ve gotten to know patients and the diversity of their feelings–the variety of their feelings, as they approach death, or as they get stronger and stronger, and are discharged from the hospital. I’ve watched hope turn into despair as a family member dies suddenly.

I have seen dramatic deaths and deaths as uneventful as somebody who is already asleep passing invisibly into another stage of sleep. It was discernible only on the cardiac monitor–a regular rhythm turning into a life threatening arrhythmia and then into asystole: the rhythm of death. That’s what happened to my mother after she threw a pulmonary embolism in the medevac jet as I was flying with her from Milwaukee to Seattle, post stroke. We landed in Bismarck and she was admitted to one of the local hospitals. She kept on deteriorating. Nothing was working, and I watched in the beautiful sunset as that transition into asystole took place with the setting Bismarck sun shining in the picture windows, and I watched the monitor, and then the sun, and then realized that I was an orphan, though hardly a child.

Some of the stories that I write are about me. Some involve me in some way, and some are fiction. But one thing that is happening is that I feel a deep connection with my writing that has not been there before. It is not a scientific or scholarly remove. It is life. It is about life. It is about my life, and about others’ lives, and it is about death. Much of it is not the drama of ER or other doctor shows, but about routine. But there is something inexplicably rich there. My friend Nancy calls it “the rich tapestry of life,” and that captures it.

It feels now like somehow I have found my “voice.” I hope to be able to keep writing as I have been. If–when–some of these pieces get accepted for publication, I will post it here. The meaning, though, is in the doing. I realized that acutely 30 minutes ago as I finished that piece about my own mother’s death.

Through all of this, I have discovered a deeper meaning to life, and if that is all that this has bought me, then there is a beauty right there that has made it worth it.

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Conflict of interest?

Yesterday 3 colleagues and I submitted a refutation of an article concerned with opioids to a major journal. When it came to the section on stating whether I had a conflict of interest, I realized that I did not have a conflict of interest, it might appear that I did, so what to do?

The facts are this. The article to which we were responding concluded that opioids are no better than nonopijoid treatment in dealing with moderate to severe chronic back pain, osteoarthritis of the knee, or hip pain. This may or may not be true, but the study was methodologically flawed in some very severe ways. Therefore, the conclusion is not warranted from the study.

So, where is the potential conflict? A decade ago, a colleague and I accepted an unrestricted grant from Purdue Pharma (manufacturer of OxyContin and MS-Contin). We were going to (and did) study socio-economic and geographic inequalities in access to prescribed outpatient pain medications in the State of Washington. The only other place where this had been investigated was in New York City, where there were immense inequalities. Would there be in a much different, partly urban and partly rural setting? We did not know. We thought it crucial to know. (the “we” being John Loeser, MD, Neurosurgery and Anesthesia/Pain Medicine, Univ of Washington). Purdue kindly gave us a grant to look at this.

All that Purdue asked was that they receive a copy of the article once it was published (Clinical Journal of Pain) which we provided. There was no other correspondence between us. There were no conditions set for the study.

In other words, there was no conflict of interest. But appearances are sometimes everything. I thought that it would be incorrect to state that I had no conflicts. Yet it was also incorrect to state that I have a conflict of interest. In the end, I thought it better to be safe than sorry and I declared this as a potential conflict. I don’t know whether this was the right thing to do or not, but considering the existing atmosphere, and community standards, I thought it best. Will we be attacked for having a conflict? Maybe. Will the piece not be accepted because of a conflict? Maybe. Would I feel wrong in not declaring a potential conflict? Yes. I would have felt wrong. The optics would be funny.

Posted in clinical research, epidemiology, evidence, Pain, proof | Leave a comment

Beyond the numbers: experiences with patients and the health care system, part 1

By Jonathan Mayer
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This is the first installment of a continuing account of my experiences in medicine and with patients. It will continue periodically as part of epihealth.

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My first night working in the ER of the new tower in the hospital, I looked into one of the tree trauma bays and wondered, “am I going to die in a place like that someday?” I was 28. It didn’t seem macabre. It just seemed natural. Some people would make it out of that area alive, and others would not. I knew it. And over the years, that was exactly what happened. It was very different than Infectious Disease Clinic, where I’d been seeing tropical medicine patients for years.

I was there as a volunteer crisis intervention and suicide prevention counselor. I was deeply into my research as a young faculty member, yet it wasn’t enough for me. I craved the more intimate involvement with people in need. I can’t explain it, nor have I really felt the need to. So I went through the necessary training when I heard that the position was being established. Though the hospital is an urban one, at the time, there was no social work or psychiatric coverage there. The truly serious cases would go to one of the downtown medical centers. As I had learned in my two years doing similar work in graduate school, most people in the vulnerable position of being in an ER could at least use somebody to talk to–a friendly face. Some needed much more. A medical school faculty member threatened to kill himself when I did that in graduate school. I tried to talk to him. He yelled at me, telling me that he knew what I was doing because he was a psychiatrist, and my being friendly would not help. My heart went out to him. Somehow he made it through the night. He went home. I thought that maybe he had really made it over the hump. Two weeks later I read that he had killed himself. I learned that night that he had taken a small cutdown kit, and used some lidocaine on his neck. He had meticulously cut his jugular vein. He bled to death, holding onto his stuffed teddy bear. We tried. I tried.

But back to Seattle. The richness of the encounters with people gave and continue to give meaning to analysis as an epidemiologist and social scientist. I got to know hundreds and maybe thousands of people in the ER. I’d like to think that I made some hard nights easier for people. Sometimes it was emotionally tough, but it was real.

It was a very busy night. I had spent several hours talking to some severely depressed people. I left one of the rooms, looked to the right and notice that one of the nurses, was doing CPR in the room that I’d first spotted when I had wondered if I would die in a place like that. Our eyes met. I raised my eyebrows and she raised hers. It was a tacit acknowledgment that yes, this was not a good situation. The code team was there. The last thing that they needed was another hand. This was right about the time that I began the medical ethics fellowship that would ultimately lead to my establishing the ethics consult service at that hospital. An hour later, I was pushing a gurney though the empty corridors of the hospital. The patient had not made it. It was so busy in the ER that charge nurse asked me, with embarrassment, if I would mind transporting the patient to the morgue. Now I’d never done anything like that before, but sure, I figured, if it would help. I thought that I knew how to get there, and it would only be 7 or 8 minutes roundtrip. So I was pushing a gurney and all of a sudden a hand (attached to an arm) tumbled out from under the sheet. I had hit a bump indelicately. I thought that I’d never anticipated that I would be pushing a dead person to the morgue at midnight when I had entered grad school to get a PhD, yet here I was. I’d just begun an ethics fellowship, I was 7 years out of grad school, lucky enough to have a great academic job, and to be doing something meaningful at the hospital, and about to become a father, and it all seemed so dissonant that as soon as the gurney and I reached the elevator and the doors closed, I began laughing uncontrollably. It was one of those times like at the symphony–the orchestra reaches a crescendo, everything is quiet, you know you’re not supposed to make a sound, but somebody behind you burps, and you try not to laugh, but you can’t help it, and the harder your try the harder you laugh. So there I was laughing with a corpse. Was it dishonoring the dead? I would like to think not. I  hope not.

One week later, I became a father. I was working at the same hospital, only I remember very little of that evening. Not much was happening in the ER, and a bunch of us were sitting around talking. I remember that I had a tropical medicine text with me. My beeper went off. It was my home number. I called, expecting that it might be my wife in labor. Her water had broken. We lived three miles away. She was pretty calm about it. I’m always calm in an emergency, and I had had many times handling some pretty crazy stuff in the ER, but my colleagues told me that I barely held it together. My wife was comfortable driving herself to the hospital, which she did. Apparently I had put on some scrubs, but left all my clothes strewn around in the changing room. Apparently too I was pacing up and down in front of the counter in the ER, and people were trying to calm me down–a kind of role reversal. 24 hours later, the outcome was very happy. I became a dad. I was so happy. I was tired. By that point, I had been up 36 hours. A few hours later I drove myself home, but I could not sleep since I was so excited. And the next morning I went back to the hospital to be with my family. Eventually I fell asleep that night after 60 hours of being awake. When I walked it felt like the ground was shaking under me.

I thought about it. I’d seen my share of death, of tragedy, and of people just passing away. But there in those two days, I had experienced the happiness of being a dad.

******continuations of this true account will appear periodically in this blog***********

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Research in service to the pain community by Jonathan Mayer

While working in Ghana, one of my first reactions to the largest “slum” in the country was that I could not be one of those researchers who would take research data from the community and then leave the community. I wanted to help. But I did not want to help in a paternalistic way. I wanted to help the well being of the community in a way that responded to what community residents identified as being their big health problems. I formed a team of very talented Ghanaians, Americans, and Norwegians to try and respond to this challenge–one involving poverty, deprivation, exploitation, environmental contamination, infectious disease, political discrimination, and many other challenges. Unfortunately we ultimately did not succeed, or succeeded in only a very small way, and there are big lessons to be learned from that. I hope to write about some of those in coming weeks. But this is about something else.

Much of my work in the past few years has been about pain and pain treatment. With changing  politics, and changing dominant notions of what constitutes “good pain care,” which excludes opioids for many reasons–many of which are ideological and frankly dogmatic, an increasing number of people who have been on stable regimens of opioids have been rapidly tapered off of them and have been offered nothing as a substitute. The problem is that we do not know how many people like this there are, or what has become of them, or how well they are doing psychologically, or how well they are “functioning”, or whether their lives have taken a turn for the worse, or for the better. There are no data sources that allow us to do that.

Yet there are stories. Some derisively call them anecdotes, but there are stories that I hear through social media and interviews, and those stories are stories of suffering. For some, new guidelines promulgated by the CDC, admittedly to minimize potentially terrible consequences of opioid overdoses, have not been kind. Many of these individuals feel abandoned and voiceless.

This poses a challenge. It does nobody good to have populations abandoned under such conditions. At the very least, people need to have adequate and dignified access to multidisciplinary pain clinics, in which treatment for chronic pain is approached from many angles at once: general medicine, physical therapy, physical medicine and rehabilitation, psychology and psychiatry, neurology, anesthesiology, and so called integrative medicine, just to name a few, all within a framework merging compassion and technical expertise. The first of these was at my home institution: the University of Washington, begun by a visionary group of people over 50 years ago. Data show that this model was the best one for improving peoples’ lives in terms of their levels of happiness, self rated functioning, well being, and other metrics. But unfortunately, the health care environment eventually caused many of these clinics to close. They began losing money. And now there are only 200 left to serve the entire country.

Pain is the most common reason for primary health care visits, and pain is the most prevalent health care condition both in the US and globally. We cannot just abandon people by tapering their opioids and in a condemnatory way leaving them to fend for themselves. as though they had asked either to suffer from chronic pain, or to be on opioids.

I decided, therefore, to try something. I remembered what we tried to do in Ghana. Now I am asking people on Twitter and elsewhere: “in my research, how can I help you? What questions can I ask? What needs to be known? What can I find out?” I have that freedom.

Maybe I can make a difference, and spur others to as well. What better way is there to begin than by asking people themselves to help define their own problems?

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Academic turfitis and budgets: public health undergraduate education (by Jonathan Mayer)

In the mid 1990s, I was asked by the Dean of the School of Public Health to develop a Minor and Public Health at the University of Washington, and it became so popular that we decided to extend that into one of the first undergraduate majors in Public Health. I developed this as well, with one other colleague, and directed this for one year, and then co-directed it. At first, because there was no budget, we did this as volunteers. We were both convinced that exposing undergraduates to public health as part of a general undergraduate education–to issues of health and well-being, and to global health–was an essential part of any broad undergraduate education. We finally were allocated a very small budget.

We structured the major in a manner that emphasized courses outside of the health sciences. In part, that was because there were very few undergraduate courses in public health, but even more than that, it was for intellectual reasons. We emphasized the geographical, economic, social, political, environmental, and biological influences on population and its health. We specifically did not want the degree to be a vocational degree, and were happy that we would be using mostly courses outside of the School of Public Health. Several of my own courses in the Department of Geography were required, and lest this seem self-serving, there was no budgetary advantage to doing this, either for the Department of Geography of for me. The real reason was that these courses fit the framework that we were using, and they were also among the very few public health courses for undergraduates at the entire University of Washington. The students enjoyed the major, and entry was very competitive. There were some years when we could accept only about 20% of the applicants.

Let us “fast forward” by a little over a decade. Like so many institutions, a new budgeting system called “activity based budgeting” was instituted. Cutting through all of the esoteric language, what this meant was that budgets would be allocated according to some complex formula considering student credit hours, grants, and other “productivity” measures. Much of this took place while I was on the Faculty Council of the School of Public Health, eventually serving as Chair, and thereby serving as the voice of the School’s faculty. There were many ironies in this. No unit of the UW were exempt from the new budgeting system, and at the same time, NIH grants were increasingly competitive. Almost all faculty members in my department–epidemiology–were and are dependent upon grants not only for their research, but for their salaries. The School gets almost no fixed monies from the State of Washington. However, people quickly realized that there could be one source of more stable funding: undergraduate teaching. Thus, for the first time, there was a real incentive to develop undergraduate courses.

In addition, the School;s administration also realized two things. First, that there would be a tremendous financial advantage to a very major expansion of the undergraduate major, and second, that the demand for the undergraduate major was higher than ever. As a result, all 5 departments in the School of Public Health developed a suite of excellent and exciting courses, and the major expanded for 50 students total to over 600, and it is still expanding. It is now rated as the top undergraduate program in public health in the US.

The next step is probably obvious. By the time of the major expansion, I was no longer the director or co-director of the major. First, two of my health and disease courses, like those in other departments, were no longer listed as required for the major. Within a year, the third course was no longer listed as required. There was a disincentive to have students take courses outside of the School of Public Health. The unintended consequence was that the enrollment in courses that I teach, and in similar courses, began to plummet, because the demand from the School of Public Health had dropped precipitously. Thus, there was a tremendous irony. I developed, directed, and then co-directed the major in public health. It was a boon to many departments in the College of Arts and Sciences, and students were getting a truly cosmopolitan view of public health. None of the students whom I knew who wanted beginning positions in public health failed to obtain them. There was a university-wide interest in public and population health.

With the new budgeting system, this all changed. There was university-wide rhetoric promoting interdisciplinary education, but the budgeting system that *did not need to be adopted* provided incentives to look inside and stay inside, and so this is exactly what happened.

From an intellectual viewpoint, I abhor what I call “turfitis”. “What does medical geography do that spatial epidemiology doesn’t do better?” is asked even more frequently than the converse. In the past, I have shut such discussions down, saying that such discussions are intellectually vacuous, and that we all share the common goal of understanding health and disease, in a manner analogous to that of systems biology, in which there is so much overlap that the disciplines themselves become unimportant. Intellectually, I still feel strongly that this is the case. But does the new budgeting scheme even allow us to be primarily concerned with the intellectual over the pragmatic, or the scientific over the budgetary?

I find myself truly straddling a fence. I have a joint appointment in the Department of Geography and in the Department of Epidemiology. What one of them gains in terms of enrolments, the other might lose. In addition, my appointments are in the School of Medicine and in two other departments in the School of Public Health.

Yes, the budgeting system is “transparent.” It hinders the very type of study that is so important in an era of cross-disciplinary understanding of complex phenomena such as health and disease. It promotes provincialism. It hinders looking outside of a particular discipline. The students are poorer, because of it. The institution is poorer because of it. It is a poorly advised additional step to the ever continuing corporatization of the industrial university. I regret for many reasons that this kind of system was ever adopted. It is one of the reasons that I am happy that the end of my university affiliated career is far nearer than its beginning. Turfitis begins to loom ever above us, perhaps even influencing the way in which we think.

Posted in epidemiology, Health, higher education, medical and health geography, public health, science, Uncategorized | Tagged | Leave a comment