The Enduring Wisdom of Franz Ingelfinger

On May 5, 1977, Dr. Franz Ingelfinger, editor of the New England Journal of Medicine, delivered the George W. Gay lecture on medical ethics at Harvard Medical School. I was in full time practice at the time and, alas, was not at the lecture.

Dr. Ingelfinger, one of the world's experts on esophageal cancer, had developed the disease he had taught so many others about. Here's what he tells us with regard to the difficult question of whether to undergo chemotherapy and radiation after surgery:

I received from physician friends throughout the country a barrage of well-intentioned but contradictory advice. As a result, not only I, but my wife, my son and daughter-in-law (both doctors), and other family members became increasingly confused and emotionally distraught. Finally...one wise physician friend said, "What you need is a doctor." He was telling me to forget the information I already had and the information I was receiving from many quarters, and to seek instead a person who would...tell me what to do, who would in a paternalistic manner assume responsibility for my care. When that excellent advice was followed, my family and I sensed immediate and immense relief."

Yesterday I spoke with a dear friend whose spouse is suffering from a profoundly serious medical condition that calls for complex clinical, psychosocial and financial decisions. My friend reported "if I had a dollar for every time I was asked - 'what should we do about XYZ' - there would be no financial problems to deal with!" My friend described feeling "you are the doctor - what do you think we should do?"

My friend was encountering a common medical ethics dilemma. We physicians are taught to provide "patient-centered" care, to "respect patient and family autonomy" and to avoid "paternalism." But as Dr. Ingelfinger described so poignantly, in the context of serious illness, patients and families also need support and guidance. Physicians need to develop communication skills that allow us to thread between respecting autonomy and providing structure and guidance.

There's no single right answer as to how to do this. I often found it helpful to (a) elicit the patient's goals and values, (b) give my view of what course of action these goals and values called for, but then (c) check on whether, from the patient's perspective, I'd gotten it right.

Over the years with medical students and residents I've often quoted Muhammad Ali's philosophy of boxing: "float like a butterfly/sting like a bee." Ali's eight-word formula conveys the need to embrace and integrate ostensibly incompatible components. Doing this takes experience. It also takes time.

I don't know if my friend's physicians felt rushed. My brilliant colleague Dr. Amy Ship recently wrote about how limited time constrains us in our efforts to be the best we can with patients and families. But whether or not time was a factor for my friend's physicians, Dr. Ingelfinger's guidance from his own experience as a patient holds true forty-one years after his lecture.

(Dr. Ingelfinger's lecture, published in 1980 after his death, is available here. "Physicians as counsellors," a previous post on a related topic, is here. )

The Moral Vision of Primary Care

The underlying vision of primary care is to do what is needed to promote and restore health. Sometimes this requires referring patients to specialists, but more often it is done directly.

An article in today's New York Times about Dr. Nicole Gastala describes how the young physician, just out of residency and paying off her loans through practice in a community clinic in Marshalltown, Iowa, encountered the opiate epidemic and decided to do something about it. She did the required training to be licensed to prescribe buprenorphine so that she could provide medication assisted treatment to patients with opiate addiction. She got a federal grant that facilitated starting a program and hiring a nurse to join her in staffing it. She continues her own education via telemedicine with a clinic in Connecticut that provides consultation and education to primary care buprenorphine providers. She has strengthened her own capacity for acceptance of patients who relapse. And, as she and her husband prepare to move back to Chicago, she is taking steps to perpetuate the buprenorphine program.

For the past twenty years I've had the privilege of co-facilitating a "patient-doctor" seminar for superb primary care residents throughout the three years of their residency. They've reported how frequent it is to hear versions of "you're so smart and capable - why aren't you going into a medical specialty?" As I thought about their choice of primary care, the Buddhist concept of Bodhisattvas of Compassion came to mind. I've written before about the statue of Guanyin at the Boston Museum of Fine Arts. In Buddhist tradition, Bodhisattvas are enlightened beings who choose to remain among mortals to alleviate suffering.

This vision is available to any and all health professionals, and of course to others in professions like education. But in medicine I see primary care as the purest form of the "Bodhisattva-like commitment," since it puts the fewest filters between the individual physician and the full range of human suffering. The article in today's New York Times does not contain high falutin language, but the simple story of a young physician's post-residency practice gives a down to earth picture of the moral vision underlying primary care.

Addendum: The July 5th issue of the New England Journal of Medicine has an excellent article on "Primary Care and the Opioid-Overdose Crisis: Buprenorphine Myths and Realities." If you've read this far I urge you to follow the link to the NEJM article.

Medicine and Mysticism

Even before I knew that Guanyin was the Bodhisattva of Compassion I was drawn to her image in the Boston Museum of Fine Art. (In Buddhist tradition, Bodhisattvas are beings who delay reaching nirvana out of the wish to alleviate human suffering.)

My own recent experience with medical care leads me to see concepts like Bodhisattva and Guardian Angel as telling us something important about medicine.

   

                                         Guanyin - 
                          Bodhisattva of Compassion

Two months ago I wrote about the condition that had given me many months of pain, severely disturbed sleep, and difficulty walking (see here and here). My primary care physician referred me to a hematologist who made a presumptive diagnosis of a platelet dysfunction and prescribed a medication that acts on the bone marrow to slow down the platelet production process.

Prior to the diagnosis I'd assumed that the mysterious condition was not going to go away, but now, two months after starting the medication, the symptoms have almost entirely cleared up. I'll have to take the medication for the rest of my life, and some complications could emerge, but I feel like "myself" again.

So what do these experiences have to do with Guanyin?

The medication I'm taking requires careful monitoring to make sure it's doing what it's supposed to do with the platelets, but not causing too much decrease in white & red blood cells, which the bone marrow is also busy producing. We've checked the blood nine times between the day I started the medication and this week. The results go to my hematologist who writes to me on the secure email her practice uses to interpret the results and suggest how to handle the medication.

I counted her messages in my inbox: 13 messages and a total of 386 words. That's less than 50 words/week.

From my own experience as a physician I doubt that our exchanges required much time. But in addition to the instrumental importance of the guidance I received, I was aware of a strong sense of emotional support and of being cared for that the 386 words conveyed. I identified two sources for that feeling. The promptness and reliability of the hematologist's response after my blood tests elicited a sense of security. And the happiness she expressed as my symptoms improved elicited a sense that my well-being mattered.

That's what Guanyin stands for in Buddhist culture, and likewise for Guardian Angels since they first appeared in the Hebrew Bible. Within the theologies, Bodhisattvas and Guardian Angels were vehicles for conveying divine love to us vulnerable mortals.

Health care workers tap into the same psychological and cultural substrate. The feelings I've had as a patient are the reciprocal of the sense of mission I had as a physician. Recently, at the end of an appointment, a patient said "thank you," to which I replied with the same two words. When my patient asked me why I said "thank you," I explained that being a physician (or a nurse, social worker, physical therapist...) is a privilege, and that the act of healing required collaboration between the involved parties.

I believe that if we could interview Guanyin and Guardian Angels, they would tell us that they were grateful for their opportunity to minister. There's a "mystical" element in health care that market concepts like "consumer" and "provider" are woefully inadequate for understanding.

(See here for a post about why secular clinicians might want to use religious language in their practices, and here for a post about love in the patient-doctor relationship.)

A Personal View of the Medical Home concept

Into my mid 70s I felt remarkably fit. I was still playing tennis and taking my favorite hikes during the summer in Vermont. That changed when a mysterious problem I've written about in a couple of posts (here & here) set in.

As a result of the problem that developed, I've had more medical appointments in the last six months than in the previous 25 years. As someone with an interest in health policy & systems, my experience has sharpened my sense of what's required to make a "medical home" work. (For those who aren't familiar with the medical home concept, I've copied material from the Patient-Centered Primary Care Collaborative at the end of my post.)

Here's my patient's eye view of my experience:

1. In the fall of 2016 I was floundering as to what to do about the problem, Whatever was causing pain and discoloration of my left foot/ankle/lower leg was still a mystery. My primary care physician (PCP) suggested seeing a dermatologist, something I hadn't thought of myself.
2. The dermatologist said what she saw was unusual. She did a biopsy which, alas, came back as "non-specific changes," That meant we were still unsure. She could simply have sent me back to my PCP, but to her credit, she suggested that we get a second opinion from someone at the hospital my care group is associated with.
3. Initially the referral went to the referral coordinator and an appointment was set with a presumably thoroughly competent dermatologist, but one who did not have more experience than the one I had seen. I discussed this with my PCP. He called the chief of the department who recommended a senior colleague who he said "is especially good with complex cases."
4. I saw the recommended dermatologist who had some hypotheses about obscure possibilities and did two further biopsies which showed (a) clotting in the tiny blood vessels and (b) no inflammation. 
5. With a narrower set diagnostic possibilities, the second dermatologist wrote to my PCP, recommending that I see a hematologist and suggesting some further blood tests. My PCP agreed, and referred me to an excellent hematologist with whom I had shared patients before I retired from practice ten years ago.
6. By this time my blood count showed something new - an abnormal level of platelets, which are crucial for clotting. The hematologist prescribed a medication that acts on the bone marrow with the aim reducing the platelets. We've used the group's secure email to follow the counts and adjust the medication. We've only met in-person once, but the email communication has been very reliable.
7. As the platelets have come down, the lower leg and ankle problems have completely cleared up. But the toes have not, and in particular my left fourth toe was exquisitely painful. Last weekend I saw an ugly open sore on the toe. I didn't know what gangrene looked like, but my imagination ran away with unpleasant possibilities.
8. On Monday morning I was able to see an urgent care physician who allayed by fears and prescribed  oral and topical antibiotics. 
9. I informed the hematologist and my PCP about the situation to make sure we were all "on the same page."
10. Happily, the wound is improving, and the pain is markedly reduced. 

So what's the point of all these details?

For me it's this: in the same way that it takes a village to raise a child, it can take an "extended family" to treat a chronic condition. My experience has been one of receiving excellent continuity of care even though I've been bouncing between clinicians the way a pin ball bounces. But the clinicians were part of the same "family." They had access to the same electronic health record and communicated with each other - either directly or via my sending "FYI" updates to them. For the underlying chronic problem I've had my blood drawn at the practice's laboratory. The results get to the hematologist and to me within a few hours, and she has followed up with email advice very promptly.

My guess is that my treatment in the past few weeks has not occupied much physician time, but as a patient I have felt very attended to. When I was worried about toe pain and an open wound I was able to see a clinician promptly, and her findings went to my PCP and the hematologist I am working with.

I believe my experience shows how a "medical home" and "team care" can be more than euphemisms. Continuity of care doesn't require continuous appointments with a single physician. When a "medical home" functions the way a harmonious extended family does, it works!

Here's the material about the medical home concept for those who want to read about it in more detail:

The medical home is best described as a model or philosophy of primary care that is patient-centered, comprehensive, team-based, coordinated, accessible, and focused on quality and safety. It has become a widely accepted model for how primary care should be organized and delivered throughout the health care system, and is a philosophy of health care delivery that encourages providers and care teams to meet patients where they are, from the most simple to the most complex conditions. It is a place where patients are treated with respect, dignity, and compassion, and enable strong and trusting relationships with providers and staff. Above all, the medical home is not a final destination instead, it is a model for achieving primary care excellence so that care is received in the right place, at the right time, and in the manner that best suits a patient's needs.

In 2007, the major primary care physician associations developed and endorsed the Joint Principles of the Patient-Centered Medical Home. The model has since evolved, and today the PCPCC actively promotes the medical home as defined by the Agency for Healthcare Research and Quality (AHRQ). 

Features of the Medical Home

Adapted from the AHRQ definition, the PCPCC describes the medical home as an approach to the delivery of primary care that is:

• Patient-centered: A partnership among practitioners, patients, and their families ensures that decisions respect patients’ wants, needs, and preferences, and that patients have the education and support they need to make decisions and participate in their own care.
   
• Comprehensive: A team of care providers is wholly accountable for a patient’s physical and mental health care needs, including prevention and wellness, acute care, and chronic care.
   
• Coordinated: Care is organized across all elements of the broader health care system, including specialty care, hospitals, home health care, community services and supports.
   
• Accessible: Patients are able to access services with shorter waiting times, "after hours" care, 24/7 electronic or telephone access, and strong communication through health IT innovations.
   
• Committed to quality and safety: Clinicians and staff enhance quality improvement to ensure that patients and families make informed decisions about their health

Adding Value by Talking More

A recent article in the New England Journal of Medicine - Adding Value by Talking More - caught my eye. For me, having practiced psychiatry for 43 years, the authors' argument was preaching to the choir. But what is special about the article is the hard-nosed way it cites data that demonstrates cost savings from investing time and money in well-planned conversation.

Here's the final paragraph of the article:

As these examples illustrate, increased physician communication is time very well spent when it leads to better patient outcomes and lower total costs. Clinicians who are reimbursed under new value-based payment plans should seize the initiative to determine how much of their valuable time should be spent in the various types of productive conversations, especially as they become more accountable for their results. Physicians now have the discretion, incentives, and accountability to use their time wisely and productively to reduce the total costs of patient care and improve the outcomes they deliver.

The otherwise excellent article omits one crucial element. Talking more with our patients also increases physician satisfaction. In conversations and CME sessions, when physicians are asked about meaningful clinical experiences, relationships with patients and moments of empathic connection predominate.

I encourage readers to go to the NEJM article. The three authors are all from the business school and the consulting world. They makes the kind of case for "talking more" that administrators will understand and be influenced by. I also encourage readers to go to the website of Avant -garde Health, a health care technology and analytics company founded by one of the authors.

Some harried physicians, unhappy in practices in which talking with their patients feels like a luxury they can't afford, choose to move into a concierge model of practice, in which they (a) limit the number of patients they care for and (b) charge an "entry fee" to be part of the practice. This solves the morale problem for the individual physician, but it weakens the health system itself by reducing the number of available primary care physicians.

The kind of work behind Adding Value by Talking More is addressed to the same problem concierge physicians are dealing with, but at the population level. As such it is a more socially responsible approach to the effort of making our health system more "patient centered."

Chronic pain, Identity, and Health System Ethics

Prior to this past year my experience of pain had been with acute episodes. An especially painful and amusing episode occurred when I started a new job at the Massachusetts Mental Health Center after residency and fellowship. Between painting rooms in the house we were moving into and carrying boxes hither and yon I threw out my back. I lay on the floor, hardly able to move. A helpful neighbor called his PCP who came to the house. (It was 1970 and house calls actually happened.) I could see that he was regarding me with suspicion. Perhaps I was a newly arrived addict who was seeking an opiate fix. And when I started my new job, in some of my meetings I again lay on the floor, giving a rather odd impression of the new hospital ward supervisor.

The pain was severe - perhaps 9 or even 10 on the ubiquitous 0-10 scale. But I knew it would clear up before too long, and it didn't burrow into my psyche and sense of self. In the (slightly altered) words of the old spiritual, it "pained the body but not the soul."

Not so with the chronic pain I wrote about 3 days ago! It's not as severe as the back spasm, but the (a) chronicity and (b) uncertainty about if and when the pain will go away has (c) taught me lessons I only understood from the "outside" during my years of practice and (d) challenged my sense of identity.

Like many physicians, my default mode is to help others. Over the years, when asked "how are you?" my typical answer has been a hearty, upbeat "excellent!" So for the simplest of tasks - taking out the garbage and even putting on my pants (I have to protect the toes from contact with the pants leg - not easy to do) - to become difficult or impossible is a shocking change. My wife has taken over my "chores" cheerfully and uncomplainingly, but I feel ashamed at (my words) "not doing my part."

Before the foot/ankle/lower leg problem set in, I took an extended walk whenever the weather permitted, and played tennis with friends weekly. Sacrificing these activities isn't just a matter of losing forms of "recreation." Being an active, out-of-doors person has been part of who I am. These losses take another bite out of my sense of identity!

In a similar vein, I enjoy being at both of the two offices I use. But parking and walking to the office is difficult, and I can actually do most of my work from home, so I have been largely invisible at my work sites. My "productivity" may not be reduced, but collegiality is down, and loneliness is up.

Coping mechanisms are crucially important and put to the test. As an example, the toe/foot/ankle/lower leg pain is worst at night. When I try to sleep it wakes me up every 60-90 minutes. My initial reaction to these awakenings was anger, but that accomplished nothing useful and made it harder to get back to sleep. By an act of will I substituted humor - laughing at myself sitting in the dark massaging my foot and hobbling around to reduce the pain. Rather than saying "why the bleep is this happening to me" I say various forms of "what a ludicrous situation this is!"

This is a blog about organizational ethics. Readers may reasonably ask "what on earth does a painful foot and difficulty taking out the garbage have to do with organizational ethics?"

A lot!

Nowadays, organizations toot the horn about their commitment to "evidence based practice." Since the Hippocratic era, the practice with the strongest evidence of effectiveness is empathic listening. Organizations can encourage this stance or - all-to-often - squelch it with bureaucratic demands and processes that treat patients as targets for efficient "throughput."

Time pressure is a fact of life everywhere in health care, but there are skills we clinicians can develop to use time well, rather than having time use us. When I joined the mental health practice at the Harvard Community Health Plan HMO in 1975, the insurance limited the number of appointments we could have with our patients. Some clinicians put this limit front and center when they met new patients, by stressing what they couldn't do. Wise clinicians, however, approached new patients differently - "Let's first figure out what you need, and then see how we can best meet those needs." The HMO encouraged me and my colleagues to struggle with the challenge of remaining true to our mission while doing what was needed to make the necessary margin to keep the program going. (See here and here for examples of that work.)

Medical care ultimately comes down to the patient-clinician dyad, but more and more often the dyads occur in an organizational setting. Empathic listening is carried out by individuals, but organizations can encourage or thwart this deeply human process. That's where organizational ethics comes in!      

(A friend who knew about my left foot problem brought to my attention a superb article by the distinguished primary care physician Thomas Bodenheimer - "Lessons From My Left Foot." It's available at  http://www.annfammed.org/content/8/6/550.full.pdf)

Health System Ethics and my Left Foot

I haven't written a post for more than 6 weeks. My left foot/ankle/lower leg are a big part of the reason for the lapse. So I decided to write about my experience and connect it to the topic of this blog -  health system ethics.

Many physicians have written about their own experiences of illness. Here's my  story.

In the fall of 2015 my left big toe itched. I didn't pay much attention until it began to hurt and develop redness. My primary care physician (PCP) was on a medical leave for a serious medical problem, so I saw another physician in his practice group. By that time I had red blotches on my foot as well. The physician had two hypotheses:

   (1) It might be an early stage of "vasculitis" (inflammation of the blood vessels). She did some blood tests, all of which were normal, and referred me to a rheumatologist (a specialist in autoimmune and musculoskeletal conditions).
   (2) It might be a circulatory problem, and she referred me to a vascular surgeon.

The  rheumatologist did a thorough evaluation with many blood tests. Except for two minor abnormalities, all were normal. He concluded that I did not have a systemic illness.

The vascular surgeon also did a thorough evaluation and a CT scan to visualize blood flow to my legs and feet, which showed adequate circulation with no visible blockage.

Lesson # 1: The specialists were excellent, but when they didn't find a problem within their purview, I was left with a "what now?" question. Given the absence of my long term PCP I decided to be my own case manager. I believed more than ever in the importance of primary care as the key hub of the health care system.

The pain was better during the summer. Perhaps the warmer weather explained it. Whatever the explanation, I enjoyed the summer.

In the fall of 2016 the areas of red discoloration spread onto my left ankle and lower leg. Happily, my PCP returned to practice from his long term medical leave.

Lesson # 2: Apart from all of the valuable things PCPs do, at least for me, and I would guess for many others as well, there is a powerful placebo effect from having a solid relationship with a clinician one trusts for skill, knowledge, and a genuinely caring attitude.

On examining me and hearing my history, my PCP said - "This is really weird. I have no idea what's going on. I think we should involve a dermatologist." A couple of weeks later I saw a dermatologist who suggested a few possibilities and did a biopsy. The biopsy came back "non-specific" - i.e., it didn't tell us anything. She thought we should get a second opinion.

It took several weeks for this to be arranged. The very knowledgeable consultant I saw put forward some additional possibilities and recommended repeat biopsies. These showed (a) tiny clots in the small blood vessels and (b) no signs of an inflammatory/autoimmune process.

This told us what was happening, but not why it was happening.

Lesson # 3: Humility is a virtue. My PCP acknowledged having no idea of what was going on, but did have an idea of what to do next. The first dermatologist suggested getting a further consult within her own specialty. Their non-arrogance paid off!

On the basis of seeing blood vessel clots, the second dermatologist suggested that I  see a hematologist, who put together (a) the presence of clots and (b) the fact that in the previous month I had a mild elevation of my platelets (blood cells involved with clotting) that was (c) a bit higher on repeat measure. Before our appointment she had me do further blood tests. We'd been colleagues in the past and she sent me the following email:

"I had you do some special blood tests beforehand and, indeed, you have a JAK2 mutation which is present in people with Polycythemia Vera and Essential Thrombocythemia.  This likely explains your elevated platelet count. I will be suggesting starting Hydroxyurea pills – very easy and well tolerated, to bring down the platelets and hopefully prevent more problems in the future."

Lesson # 4: In the previous 14 months I'd seen 10 different physicians. Without good coordination, this would be a surefire recipe for chaos. When  my PCP returned he carried out the coordination function very well, but throughout the 14 months the secure email system my practice group uses was invaluable. I could write to one physician and copy the note to others. This aspect of the electronic infrastructure really paid off.

I've started the new medication (Hydroxyurea), but I'm very aware that we're still proceeding on the basis of hypotheses. Blaming the elevated platelets is a plausible explanation, but two elements don't fit. A year ago, after the problem was clearly underway, a blood test showed normal platelets. The hematologist speculated that "perhaps your platelets are more 'sticky' and clot more easily." That could be true, but it's a speculation. And if the platelets are the villains of the situation, why are the symptoms limited to my left foot/ankle/lower leg?

Lesson # 5:  In 1865, the French physiologist Claude Bernard, who, among other discoveries formulated the concept of homeostasis, wrote “physicians make therapeutic experiments daily on their patients . . . . [M]edicine by its nature is an experimental science, but it must apply the experimental method systematically.” When faced with illness and suffering, patients and physicians want certainty. But as Bernard recognized 150 years ago, certainty of the kind we can have in mathematics is not to be had in medicine. Patients, physicians, and the public, need to learn how to work with and live with the absence of bedrock certainty.

 In this post I haven't touched on the powerful psychological impact of chronic pain and disability. I'll do that in future posts. If you've read this far - thank you for your attention!

An Ethical Perspective on Shared Medical Appointments

Stories about shared medical appointments keep popping up in the news, most recently in this New York Times article. The format involves bringing together a group of patients - as many as 15, but typically 8 - 12 - with a doctor or nurse practitioner, for a 90 minute discussion of shared medical problems, such as diabetes. Although group visits are not for everyone, the response of patients who participate and clinicians who lead the sessions are generally quite positive.

Group visits arose to promote efficiency. Although current discussions describe the format as an innovation developed in response to the parlous state of contemporary medicine, in 1905 Dr. Joseph Hersey Pratt, a Boston physician, began to lead "classes" for patients with tuberculosis. Pratt documented results that were as good as the best sanataria, but his method fell into oblivion.

In 1975 I had the privilege of starting a group visit program for patients with chronic psychiatric ailments at the Harvard Community Health Plan HMO . I conducted the group in collaboration with an excellent psychiatric nurse. I spoke with patients individually and to the group as a whole. If I wanted to recommend a medication to patient A, I often asked patient B, who was taking the medication, to talk with A about it. It was set up as a "drop in" group. Patients could come every week or just intermittently.

Physicians who lead shared medical appointments experience a different relationship with patients than in the 1:1 format. The group is more informal, and the physician often acts as a facilitator of patient-to-patient exchange, rather than as an authority. The framework tends to bring out the humanity of clinicians and patients. It's difficult for the leaders to be cold, detached or pompous.

I don't know how well the aspiration for efficiency holds up, but I do know - from my own experience and from the literature - that group visits encourage a holistic, humane way of relating between doctors and patients. The rationale for the format tends to be presented in an apologetic manner: the health system is in a mess/physicians are too harried to pay enough attention/you'll get to spend more time with your doctor in a group. These statements are true. But apology undersells the value of shared medical appointments. For patients with chronic conditions that must be managed over time, the group format can bring out a patient's own strengths and initiative and allow physicians to tap into their capacity to care in a down-to-earth human manner in new ways.

That's an ethical achievement, not just a matter of efficiency!

[To learn more about shared medical appointments, a Massachusetts General Hospital guide to conducting group visits is here,  a description of the group visit program at the Cleveland Clinic is here, and a VA guide to setting  up a group visit program for patients with diabetes is here. If you would like pdf versions of my articles about Pratt and about the HMO group program, send me your email address via the comment function.]

Borderline Personality Disorder and Public Health Ethics

An article in the May issue of the American Journal of Psychiatry - "The Emergence of a Generalist Model to Meet Public Health Needs for Patients with Borderline Personality Disorder" - shows how experts can move from a specialty niche to public health relevance. This isn't just a clinical act. It's also ethics in action!

Borderline Personality Disorder is a relatively common condition, said to affect 1%-2% of the population and to represent 15%-20% of psychiatric hospital admissions and 6% of primary care visits. People with the condition evince symptoms like: vulnerability to feeling abandoned; unstable relationships that oscillate between idealization and disenchantment; destructive impulsiveness; self-harm; difficulties controlling anger; transient psychotic episodes; and more. The condition takes a high toll on individuals, those involved with them, and the health professionals who try to help them.

In the past 25-30 years, three evidence-based forms of treatment have emerged:

• Dialectical behavior therapy. DBT involves a combination of weekly individual and group therapy that emphasizes understanding one's vulnerabilities and reaction patterns, combined with learning new self-management skills. 
• Mentalization-based treatment. This treatment is a variant of psychodynamic psychotherapy that focuses on better understanding of mental states in oneself and others, based on the hypothesis that patients with borderline personality disorder interpret and react to others in terms of their own fantasies, and that more realistic understanding will decrease their desperate emotional over-reactivity. Like DBT, mentalization-based therapy typically involves weekly individual and group sessions.
• Transference-focused psychotherapy. For this approach, twice weekly individual sessions are recommended. The treatment makes maximum use of the patient's reactions to the therapist as an avenue into modifying the internal structures that lead to the chaotic life pattern.

All three approaches can legitimately claim to have been validated. But all three require training and skill beyond the level of most mental health clinicians. Nine years ago Glen Gabbard, perhaps the leading educator in psychiatry, asked "Do all roads lead to Rome?" and suggested that the three techniques may reflect different ways of delivering common healing processes. In the just-published article that I cited above, John Gunderson, a leading researcher on BPD, builds on Gabbard's suggestion and offers a common-sense generalist model that emphasizes educating the patient about the condition, focusing on life outside of the office more than on the interaction between patient and therapist, integrating medication management, and selectively involving family and significant others.

I'm writing about this clinical issue in a venue devoted to health system ethics because the move from a specialist orientation to generalism embodies admirable public health ethics. Our U.S. health system tilts towards a specialist for every organ and condition. At its best, this approach cultivates deep clinical skills. But it also disarticulates the care of individuals into unrelated segments and mirrors the inequity of our wider society by providing a lot for the few and much less for the many.

When I did my residency in the 1960s, psychoanalytic training was regarded as the pinnacle of professional development. I valued the deep intellectual rigor of psychoanalysis, but couldn't see limiting my practice to a relatively small number of patients who would be seen 3-5 times per week, and who, by practical necessity, would have to be relatively affluent. 

Gunderson's article points in the direction I'd mapped out for myself at the start of my career. U.S. health care needs to strengthen its generalist orientation at the level of primary care and within specialties. Moving towards health insurance for all is the first step in correcting the moral failings of our health system. But the ultimate challenge is improving our commitment and capacity to provide excellent cost-effective care for the entire population. Gunderson's work illustrates what every segment of medicine needs to do.

All Physicians Should be Doing Palliative Care

Here's a condensed version of a recent conversation I had with a family member:

My family member: The hospital recommended that X should have palliative care. What is palliative care?
Me: Palliative care is a specialty that focuses on symptoms - helping people suffer less and feel better. It's for people who have serious ailments. Its aim is to improve the quality of life for patients and families.
My family member: I'm confused. Isn't that what every doctor is supposed to be doing?

The question pointed to a real problem. Helping people suffer less and feel better is indeed what every doctor who cares for patients is supposed to be doing. So even though I'm a fan of palliative care, we have to ask: why does it exist?

In my view, palliative care exists for three reasons - one good and two bad.

The good reason is that we've developed a lot of knowledge about controlling symptoms and improving quality of life, ranging from medicines and devices to psychological techniques to judicious use of community resources. Orchestrating all of these often requires a skill set beyond that of primary care physicians and subspecialists. Thus the emergence of a new specialty.

Bad reason #1 is the ethos of U.S. health care. It's displayed when we physicians, coming to the end of our potentially curative interventions, say "there's nothing more I can do for you." We should know better! 2,500 years ago Hippocrates taught us that our role was to:

One of my medical heroes is a clinician/basic scientist who cared for a dear friend of mine who had an incurable cancer. My friend came for an appointment after the last known treatment had failed. The physician said, "X, the best thing I can do for you now is to give you a hug." That's what he did. When I met the physician some years later and told him how much I admired him, he thanked me and immediately asked after my friend's spouse. Palliative care was part of what this physician expected of himself! I picture Hippocrates smiling and saying "you got it right."

Bad reason # 2 is time. When physicians ask each other about the most meaningful moments in our clinical careers, the stories are often about palliation - making contact, relieving suffering, bringing comfort. But the way we have structured medical roles makes it very difficult to spend the time required for giving good palliative attention. Rather than finding ways to make more humane practice possible, we've created the specialty of palliative care.

I have regular contact with primary care residents, and over the years a number have chosen further training in palliative care. It's not that they've turned against primary care - it's that they concluded that palliative care was the best way for them to practice medicine as they hoped to when they went to medical school. This is also why some physicians in practice choose the "concierge" format, in which they limit the size of their practice and make up for lost income by charging a fee for "belonging" to the practice.

But my belief that when we physicians care for patients we should all be doing palliative care isn't, alas, practical in 2016. I ended the dialogue by saying - "In principle you're right - every doctor should be doing that. But it isn't happening. Palliative care is a great idea for X. Go for it!"

Sharing our Experience of Illness

In the last couple of month I've developed a problem involving circulation to my toes and foot. The formal name is "acrocyanosis." Colloquially it's called "blue [or purple] toe syndrome." Though the medical literature describes it as painless, what I have hurts. It's commonest in younger people and uncommon in someone my age.

I'm a strong believer in the potential value in learning from others who have a similar condition, but Google didn't produce much, and the diagnosis was not listed on the excellent Patients like Me website. I respect the physicians I've been dealing with, but I was hoping for practical tips about coping from people who have experienced the condition themselves.

While I was musing about the topic of peer networks, my friend and former colleague Al Martin published a post exemplifying what I had in mind in his always engaging Age with Spirit blog. I don't have the condition Al is writing about (Parkinson's Disease), but if I did his post would be a treasure.

Years ago a patient of mine who was about the age I am now developed post herpetic neuralgia, a painful condition that can follow shingles. The pain added to the depression I was treating her for. Like Al, she was an activist, and she wrote about her experience on the web. A young woman from the UK contacted her. My patient, a wise and generous person, "coached" the younger woman on coping with chronic pain. I assume the coaching was helpful to the woman in the UK, but I know it was helpful to my patient.

The famous "twelfth step" in AA is perhaps the best known expression of the idea of peer support: "Having had a spiritual awakening as a result of these steps, we tried to carry this message to alcoholics..." Here's what AA says about the twelfth step:

Here we turn outward to our fellow alcoholics who are still in distress. Here we experience the kind of giving that asks no rewards. ..When the twelfth step is seen in its full implication, it is really talking about the kind of love that has no price tag on it.

My patient with post herpetic neuralgia felt a kind of love for the young person in the UK. If I had Parkinson's Disease, I would feel a spirit of solidarity and love coming to me through Al Martin's post:

This posting is a personal look at my experiences with a chronic brain disease -- Parkinson’s Disease (PD) -- in contrast to the way that the experience looks to others. We view problems that affect the brain with particular dread, because we see the brain as the determinative of who we are as people. Diseases may seem fearful or tragic to those who don’t have them, but the experience may be quite different for the person with the problem. Friends often aren’t comfortable asking about the details, and the person with the problem may not feel comfortable volunteering them spontaneously. As a result, an important part of someone’s interactions can be governed by assumptions. In the following paragraphs are some of my experiences with PD. This posting is a personal look at my experiences with a chronic brain disease - Parkinson’s Disease (PD) -- in contrast to the way that the experience looks to others. We view problems that affect the brain with particular dread, because we see the brain as the determinative of who we are as people. Diseases may seem fearful or tragic to those who don’t have them, but the experience may be quite different for the person with the problem. Friends often aren’t comfortable asking about the details, and the person with the problem may not feel comfortable volunteering them spontaneously. As a result, an important part of someone’s interactions can be governed by assumptions. In the following paragraphs are some of my experiences with PD.My story begins in 2008-09.

For some time, I had noticed a deterioration of my handwriting, which I attributed to the kind of tremor and unsteadiness that lots of older people get when they try to do fine work   I also noticed trouble buttoning my buttons. In fact, I asked a friend of mine, a neurosurgeon, if he noticed any similar difficulty with aging. He laughed that his terrible handwriting had gotten worse, and passed it off as normal aging. In the latter part of 2008, I began to notice chronic fatigue and over the next few months, the fatigue worsened, and I began to lose weight. My immediate concern was some hidden form of cancer, and in early 2009, I saw my internist, who, although he didn’t say it, had the same concern. He began ordering tests, at first a panel of blood tests and a chest x-ray, and eventually a CT scan of the abdomen. All of them were normal, and we were stumped.

On a chance, I mentioned the trouble that I had over two years, deteriorating handwriting and poorer coordination of my right hand.   He referred me to a neurologist, who within 10 minutes told me that I had PD. Among other things, he could see the stiffness in my movements and noticed that I didn’t swing my arms when I walked. He referred me to a Parkinson’s specialist, who confirmed the diagnosis and started me on one of the milder drugs for the disease.   It helped. My symptoms were very mild at the time. No one else noticed them. I could do virtually everything that I used to do, and my fatigue lessened. I was surprisingly incurious about the disease. I had, of course, learned a little about PD in medical school, the rhythmic tremor (which I didn’t have), the stiffness, rigidity, lack of facial expression, and the tiny shuffling steps. I didn’t want to know any more. As long as I was functioning well, I wasn’t interested in knowing more details about where this train was going.

Although tremor is the best-known symptom of PD, its hallmark is what is called bradykinesia, a slowing of movement and stiffness of muscles that eventually can result in immobility. PD is due to death of nerve cells that produce the neurotransmitter Dopamine, particularly in a midbrain collection of deeply pigmented neurons called the Substantia Nigra (black substance). This lack of Dopamine results in the typical symptoms of PD, tremor, bradykinesia, rigidity and difficulty with balance. As PD has become better understood, it is clear that the disease causes much broader symptoms including difficulty with speech, voice, swallowing, constipation, weakness, double vision and in some dementia. It is a disease that is readily treated with medication early on, but which progresses despite treatment with medication eventually becoming less effective.

My reaction to being told I have PD was very consistent with the well-known process of grieving any loss. The first stage for me was denial. I was told that I had PD. I knew what it was supposed to do, but I felt almost no emotion. The long-term consequences were abstract to me. My symptoms were mild; I could do almost anything that I used to do, and it wasn’t visible to others. I didn’t speak about it to friends. The few times that I did, the friend would look like I just said I had untreatable cancer and say something like, “Oh my god; I’m so sorry,” which I wasn’t ready for at that point. At times, I questioned whether I needed the Dopamine medication or even whether the diagnosis was correct. Maybe I would be the one where it didn’t progress or would spontaneously go away. When I saw someone with severe PD, I might be briefly shaken, but then put it out of my mind.

After 3-4 years, it became evident that the disease was slowly progressing, and the diagnosis was undeniable. I threw myself into an exercise program in the hope that through muscle strength, it could be overcome. I read that exercise, particularly that which involves movement, like biking, swimming, walking or tai chi, is important because it does help loosen the muscles, but I couldn’t exercise my way out of the disease. What started as a little stiffness, at times has become the sensation that my muscles are in glue and that any sustained physical effort is very hard. My voice has become soft; I tend to walk with a stoop and my face transmits less expression unless I pay attention to it. When I get up from a chair, I have to take several shuffling steps to get my balance and my legs moving. With PD, one’s muscles don’t automatically cooperate as they used to. It is said that you are damned to a conscious life, because you need to concentrate on everything you are doing and how to do it.

I am aware of what advanced PD looks like to others. Moving slowly with stuttering steps, a trembling hand and a blank stare showing no emotion makes it appear that the person is not really there. I am not at that point, but if I live long enough I probably will be. Similar to someone who has had a severe stroke, outside impressions may be worse than the reality. The disability is real, but most PD patients are mentally intact despite responding more slowly. Most PD patients are quite ‘with it’ and anxious to be engaged socially.

PD seems to hold a particular place in people’s minds as a terrible progressive disease from which there is no recovery. True as that is, most people with Parkinson’s live long and productive lives, albeit with handicaps that must be addressed. But as with any chronic disease, one manages the best one can and usually remains the same person inside of all of the daunting, outward physical signs. It is important to patients like me that people around us realize that, or one can become socially isolated.

Eventually, as with any chronic disease, I have to plan for the future. Planning for later is of course wise, but it confronts me with a reality that I would just as soon forget. As the complications worsen, I have to deal with more limitations. As much as the limitations may look terrible to someone on the outside, one learns to live within them and find new sources of satisfaction. It may sound Pollyannaish, but in some ways, it is a good time to grow internally, a time to appreciate life in a deeper way, to take one day at a time and to appreciate the companionship of people I care about. We don’t get to choose our diseases, and the worst curse is to withdraw and become isolated because your illness makes people anxious.

 

Accountable Health Communities and Primary Care

Last month CMS announced an "Accountable Health Communities" initiative:

The Accountable Health Communities (AHC) model addresses a critical gap between clinical care and community services in the current health care delivery system by testing whether systematically identifying and addressing the health-related social needs of beneficiaries’ impacts total health care costs, improves health, and quality of care. In taking this approach, the Accountable Health Communities model supports the Center for Medicare & Medicaid Service’s (CMS) “better care, smarter spending, and healthier people” approach to improving health care delivery.

I think the initiative is a very big deal!

The US health system is badly out of whack. 95% of the trillion dollars we spend on health care each year goes for acute medical treatment, but 60% or the preventable deaths are caused by "social" factors. In the brief appointments that are too characteristic of medical practice, it's difficult for physicians to learn about a patient's social circumstances. And I know from the brilliant and idealistic primary care residents I teach that they feel their training has not prepared them to know what to do in response to the stories they hear from their patients.

I believe the disconnect between what typical medical care involves and the existential circumstances of our patients' lives is a major contributor to the high rate of "burnout" and "demoralization" among physicians. When physicians and patients feel deeply connected, medical interventions are more effective and both parties experience intrinsic satisfaction. Sadly for all, this connection often does not occur.

Dr. Heidi Behforouz, a colleague at Harvard Medical School, has written usefully about "rethinking the social history." Here's her diagnosis of the problem young physicians like those I have the privilege of working with encounter:

Physicians often see patients with complex social situations as a burden — requiring extra work that is neither reimbursable nor central to our core clinical expertise. Unfortunately, we inculcate these attitudes in trainees, implicitly and explicitly, perhaps because  of our discomfort with hearing difficult stories or our sense of powerlessness or incompetence in addressing these root problems. Whereas biologic pathology may present specific targets for intervention, social or structural pathology is difficult to treat.

 The CMS "Accountable Health Communities" initiative is designed to explore organizational models that foster a stronger connection between the "medical" and "social" aspects of our patients' lives. Strong links to community resources, new skills for understanding social contexts, and improved tools for recording social information in a useful form, will all be required.

When health organizations move from being strictly "medical" to becoming "health communities," we'll have created settings in which medical, nursing, and other health professional students can learn how to do what William Osler urged a century ago: "the good physician treats the disease; the great physician treats the patient who has the disease."

From Clinical Care to System Improvement

A reward I derive from working half time is the flexibility to take on labors of love, one of which is being a member of the ethics committee at the Commonwealth Care Alliance.

Commonwealth Care Alliance (CCA) is a not-for-profit, consumer governed care system for Medicare and Medicaid beneficiaries with complex medical problems. It embodies the values that have guided my whole career, so when I was invited to join the CCA ethics committee I jumped at the chance.

Here's a story (slightly edited) from the every-other-week email circulated by Bob Master, CEO of the organization:

RA is a 61-year-old man with poorly controlled diabetes and severely compromised circulation in his legs who is living alone with a very limited ability to care for his complex medical issues. RA has also been battling a long-standing heroin addiction without success until he was prescribed Suboxone, which for many like RA, is a newer, more effective and safer treatment approach than Methadone. With Suboxone treatment, RA has experienced a full recovery from his addiction with dramatic improvement in his ability to live independently. 

 During his recovery, RA fell and sustained an ankle fracture that required surgery. Because of his diabetes, very compromised leg circulation, and requirements to avoid “weight bearing” on his surgically repaired foot, post hospital skilled nursing facility care was deemed essential. 

 However, existing regulations today prohibit individuals requiring Suboxone to be admitted to Skilled Nursing Facilities. RA’s primary care physician, and CCA Medical Director, Stefan Topolski, explains it this way: “To find that something so simple, so easy and so safe to prescribe as Suboxone – somehow becomes an impediment to needed skilled nursing facility care even when physicians providing care in that facility are certified to prescribe it, makes no sense.”

 Nurse practitioner Cary Hardwick explained that RA had been very well maintained on Suboxone. “It dramatically changed his life and his ability to live independently.” RA agreed, saying “It kept me from doing a lot of bad choices.” 

So without other options but suboptimal care in a compromised home situation, a home care plan with a high likelihood of failure was instituted. Sadly, despite best efforts, significant infection occurred at the surgical site. Ultimately, RA needed to have an amputation below his knee.

[A short video featuring RA, Cathy Hardwick, and Stefan Topolski, can be seen here.]

This is a powerful and painful clinical story. The reason I'm publishing it in a blog on organizational ethics is what Bob Master said next:

RA’s story did not need to happen, and likely would not have happened if policies were in place that promoted rather than restricted the use of effective ongoing addiction medications such as Suboxone in skilled nursing facilities. Clearly, this policy and probably many others need to change. It should come as no surprise that we are the first entity to uncover this problem and the first entity engaged in promoting such needed changes.

Accordingly, I’m proud to report that our skilled nursing facility team is now actively working with the Massachusetts Department of Public Health to change this counterproductive regulation so that individuals like RA in need of SNF care can be admitted to SNFs while being prescribed these important medications. It is admittedly a small step but I am proud to say a very important one. 

It's all too easy for us clinicians to throw up our hands in despair when we encounter a problem like the one that arose in RA's care. And it's easy for the wider public to fall into cynicism about "dumb bureaucracy." The story from CCA illustrates the kind of quality improvement from the ground up that our health system needs. I know the Massachusetts Department of Public Health. It's not a nest of "uncaring bean-counting bureaucrats." But we're all capable of making mistakes. The key skill our system needs is the kind of activism the story illustrates - moving from impediments to giving the right kind of clinical care to improvement of the system.

Hats off to the Commonwealth Care Alliance, and to RA, who wanted his experience to be used to help others!

[For a 2011 post about the Commonwealth Care Alliance, see here.]

Nuka & Organizational Ethics

Yesterday morning an email with the subject heading: "Strong Patient-Provider Relationships Drive Healthier Outcomes" appeared in my in-basket.  I might have thought - "ho hum, been there/know that" and deleted the message, except that it came from the Harvard Business Review. I was curious. What made business folks interested in a topic that every seasoned primary care clinician has known about for years?

It turned out that the authors have been doing  what business schools do so well - studying exemplary primary care systems as a basis for developing teaching cases. What struck me in the Business School findings was that the outstanding organizations they were reporting on had not simply preached about the importance of strong clinician-patient relationships: they had engineered the organizations themselves to encourage and facilitate excellent relationships.

In our teaching of medical students and other health professionals we emphasize the values and behavior patterns of individuals. This is an important starting point for health care ethics. But as the discussion of the Southcentral Foundation in Alaska demonstrated, a properly designed and managed organization can point clinicians in the right direction and make it easier for us to get there.

In the 1990s, Southcentral Foundation, well-described in an excellent article by Katherine Gottlieb, president and CEO, looked into its heart and reconceptualized its mission as being about relationships:

Alaska Native leadership recognized that the core product is something bigger than just tests, diagnoses, pills and procedures. It is about human beings and relationships – messy, human, longitudinal, personal, trusting, informing, respecting and accountable relationships...If a practice or organization really believes that the core product is relationship – that is, partnering to make a difference over time – a fundamental change is required. Where money and time are spent, what work staff members do, who is hired and how staff are trained – every action is intentionally designed to optimize relationships.

Southcentral calls its approach the "Nuka System of Care." "Nuka" is a native Alaskan word meaning "big living things." Gottlieb describes four key ideas driving the "big living" Nuka system:

1. "The customer drives everything." Southcentral thinks of those it serves as "customer/owners." The SCF approach goes well-beyond the current buzzword - "patient centered care" - which often connotes an empathic attitude but not redesign of services to meet patient preferences.
2. "All customers deserve to have a health care team they know and trust." It's easy to endorse this principle. What distinguishes SCF is the actions they take to facilitate trusting relationships, not simply their words. Words are cheap. Making the sentiment a reality takes sustained work over time.
3. "Customers should face no barriers when seeking care." 75-80% of the appointments are for same-day care. That says it all!
4. "Staff members and supporting infrastructure are vital to success." Again, what counts is well planned, consistent devotion to this aim at all levels of the organization.

The crucial insight arising from the Harvard Business School project, which is being conducted in collaboration with Center for Primary Care at Harvard Medical School, is that organizations are moral actors, just as individuals are. Strong clinical relationships promote trust and health. In a health system in which organizations play an ever increasing role, we need to focus on and strengthen the moral behavior or organizations as well as individuals.

[For readers who want to delve further into the concept of organizations as moral actors, see this article by my friend David Ozar, an early leader in thinking about the ethics of organizations.]

Malignant: Medical Ethicists Confront Cancer

I've just read Malignant: Medical Ethicists Confront Cancer, edited by Rebecca Dresser. Seven ethicists who have either had cancer themselves (5) or cared for a spouse with cancer (2), or both (1), write about their experience and discuss what that experience might mean for ethics and clinical care. It's a very approachable book. I think most readers of this blog would find it powerful.

Here are some of the main lessons I gleaned from the book:

1. Not surprisingly, direct experience deepens our understanding of the issues we teach about in the classroom and write about on blogs and in print. The deepening isn't conceptual knowledge. It's more that the experience acts as a filter, indicating what's truly important in what we've thought and where we've been naive or callous. In my ethics seminar section at Harvard Medical School we regularly work with cases. I've taken to "becoming" the patient in the case, and interacting with the class in that role. I've found that taking on the persona of the patient - even when that persona is very different, as when I play a teen age female - the role comes alive for me in feelings and perceptions. I become a better teacher for it. If the students learn half as much as I do from those exchanges, the class is a success.
2. Norman Fost describes a remarkable experience. Being worked up for what seemed clearly to be a recurrent kidney stone the resident evaluating him ordered a CT scan. Fost explained to the resident why he thought the scan was (a) medically not called for and therefore (b) an wasteful expenditure. But he didn't refuse it. The scan confirmed what he knew - he had yet another kidney stone. But it also showed a mass, which on further exploration turned out to be an early, and apparently curable, kidney cancer. Kidney cancers are often found too late for cure. Fost believes the CT scan may have saved his life. But he holds to the view that it was wrong to order it and that it reflects an overly interventionist, inadequately cost attentive, US medical culture.
3. Rebecca Dresser and Dan Brock write about decisions they made that in retrospect (a) went against their values and (b) about which they wish their physicians had discussed/argued with them. Dresser's example is especially telling. She refused a feeding tube and was close to death when a nurse talked her into changing her mind. Dresser and Brock speculate that physicians may have learned the lesson of respecting patients' decisions too well! Rather than challenging bad decisions - decisions that go against the patient's values, they too readily acquiesced. In terms of "Four Models of the Physician-Patient Relationship," a valuable paper  by Linda and Zeke Emanuel from twenty years ago, their physicians applied the "informative" model - provided information and then, in effect, followed the patient's "orders," when the reflective give-and-take of the "deliberative" model would have been more useful.
4. Arthur Frank sees cancer support groups as potentially hugely valuable for patients, but he warns that these groups and what he calls the "survivorship industry" can thrust identities that don't fit onto patients. His comments helped me understand something I observed several times in my clinical practice. Patients who had experienced a loss, and who by all appearances were going through painful, but "healthy" grief, were frightened by the fact that they weren't crying more. They had imbibed the view that "proper" grief involved lots of tears and feared that they were full of unshed tears that would act like a poison. Explaining that there wasn't a single "correct" way to experience grief reassured them.
5. Finally, and with most personal impact for me, John Robertson and Leon Kass write in painfully raw terms about accompanying their wives on their journeys with ovarian cancer. Robertson's wife Carlota Smith died. Kass's wife has experienced recurrences, but is still in treatment. I hope that if my wife encounters a similar experience I will respond with the commitment, care, and courage that Robertson and Kass displayed.

There's lots more than I've written about to glean from this moving book!

The Role of Will Power in Medical Care

I've made a belated New Year's resolution - to read "Willpower: Rediscovering the Greatest Human Strength" - a book about how to make effective resolutions. I made my resolution while reading an article about it in a recent New York Times.

The basic ideas aren't rocket science. But they're practical, well articulated, and grounded in research:

1. Set a single clear goal - not an overwhelming program of total self-modification all at once.
2. Apply a strategic plan. The classic example is Odysseus. When he wanted to hear the sirens sing but to resist their charms he didn't just rely on will power - he had himself tied to the mast, and had his sailors put wax in their ears so they (a) could hear the sirens and (b) couldn't hear his demand to have the ropes taken off.
3. Develop a support team. Years ago a patient of mine described, with pleasure, how when he whined about stress in his AA group the group chanted, in unison, but with affection - "Tough Shit! Don't Drink!" Now, with the burgeoning of web supports, we can supplement the support process with social networking tools.
4. Monitor progress. Over the years there's been debate, for example, as to whether checking weight daily discourages would-be reducers, but evidence now suggests that for most people, regular feedback helps.
5. Don't overreact to lapses. The quality improvement mantra - "every defect is a treasure" - applies to managing ourselves. Falling off the wagon from time to time is almost inevitable. The key is to (a) learn what we can from the episode and (b) not interpret a lapse as a global defeat.
6. One day/hour/minute at a time. Years ago I asked a substance abuse counsellor colleague to join me and a patient who was struggling with alcoholism. She pointed out that if focusing on a day was too much, changing the time scale to "one hour at a time" or even "one minute at a time" could sometimes strengthen our capacity for control.
7. Give frequent rewards. Just focusing on control can be grim and joyless. Most of us need pleasurable payoffs for our efforts as well. The NYT article described a scale that will automatically make donations to a charity if we're meeting our weight target!

I applied most of these precepts in my work with patients suffering from chronic psychiatric conditions, but in a less systematic way than I would if I were starting over. The biggest change for patients and clinicians is the availability of all kinds of web-based tools that can supplement these ancient psychological insights. Scales can track and graph our weight. Pedometers count our steps. Social networking applications orchestrate our support group, supplement it when it needs augmentation, or replaces it altogether with responses we can design.

I ended my clinical practice four years ago, but at the turn of the year I received a series of communications from former patients. One asked me to buff up a voice mail message that has been a useful booster shot over time. Another asked for guidance about significant health-relevant New Year's resolutions. A third simply wanted to report on the status of the major areas we'd worked on for many years.

Many years ago, a patient whose well-being required strengthened assertiveness had identified the second serve in tennis as a valuable monitoring tool. This person's skills were excellent, but fear of double faulting led to a bloopy second serve. Some time after we ended treatment I was happy to receive a three word message: "Second serve humming!"

To care for patients with chronic conditions, we clinicians need to orchestrate the balance of patient self-management and the support and guidance we provide. This is a fascinating aspect of the art of medicine. It touches on the eternal philosophical conundrum of free will vs determinism. When we get the balance right it's usually clear and always satisfying.

Adapting to Chronic Illness

I'm at a Vermont country inn for a few days of family holiday. Today a freezing drizzle deterred us from cross country skiing or snowshoeing, and I sat by the fireplace with Oliver Sacks's most recent book - The Mind's Eye. The book is a collection of Sacks's distinctive stories about people who have experienced neurological disasters. Sacks uses the stories to probe how the mind functions and how we frail but resilient humans adapt to dramatically altered circumstances such as losing the ability to speak, read, or recognize objects.

Pat, an active, sociable woman, suffered a massive stroke in her sixties that left her paralysed on the right side and unable to speak. Sacks describes how over the course of several years Pat learned to express herself by way of gestures and use of a list of words she could point at to name a topic or make a request:

Every so often, Dana [Pat's daughter] related, her mother would make a gesture that seemed to say, "My God, what happened? What is this? Why am I in this room?" as if the raw horror of her stroke hit her once again. But Pat was aware that she had, in a sense, been very lucky, even though half of her body remained paralysed. She was lucky that her brain damage, though extensive, did not undermine her force of mind or personality...

Pat's story, and others, reminded me how patients of my own had adapted to psychiatric ailments that, in the current state of the art, we couldn't cure. (I've disguised the vignettes.)

John had schizophrenia, but luckily not with any deterioration of underlying intelligence or other mental functions. When his symptoms acted up he channeled voices. To him the experience was real, but he knew that walking down the street conversing with hallucinatory companions struck people as odd. Since he liked to be out and about, he carried a cell phone, to look like others chattering with presumably non-hallucinatory conversational partners.

I was impressed with John's practicality, and passed on his technique to others.

Janet, in her forties, also suffered from schizophrenia. She was tormented by the conviction that she spoke in her sleep, accusing herself of deviant sexual acts. Her husband assured her that she slept soundly and said nothing, but she didn't believe him. She insisted on keeping all the windows closed so that passers by wouldn't hear her self accusations and think badly of her.

Closed windows made the house stuffy in the summer. This made for conflict with her thirteen year old son Alex. He persisted in opening his window and Janet persisted in blowing her top.

We held a family meeting. I said to Alex - "you know your mother has beliefs she can't shake that make her feel the windows have to stay shut." Janet nodded in agreement. "But if you're too hot in your room and sneak your window open, she'll understand and won't get too mad in the future." I was sure that Janet, who loved Alex and who had a sense of realism alongside her delusions, would agree. She did.

It was as if Janet lived on two planes. On one, her delusions were in charge. On the other, she could accept Alex's need to open his window. I was never sure whether that meant that at some level she saw her delusions as "unreal," or if, as a loving mother, she was willing to risk condemnation from her neighbors for the sake of her son.

I'd asked a patient who came from France what a French psychiatrist would say at the end of an appointment to a patient struggling to stay well. First she mentioned "continuez sur le bon chemin" ("continue on the same good path"). Then she cited, as more helpful to her, the single word - "courage." That rang true.

Clinicians who care for people with chronic conditions need to be skilled at rehabilitation as well as their own specialty. We need to respect and support our patients' capacity for courage.

Another of Sacks's patients made the point well: "The problems never went away, but I became cleverer at solving them!"

The Dignity of Risk

I often write posts about an article in the morning newspaper or a just published medical journal.

This post is about an article written in 1972 - "The Dignity of Risk and the Mentally Retarded."

I have the privilege of serving on the ethics committee of the Commonwealth Care Alliance (CCA), a consumer governed, not for profit health system that cares for people with complex medical and psychological needs who are covered by Medicaid or "dually eligible" (for both Medicare and Medicaid). CCA tries to help its patients live in accord with their values, which often means helping people with significant impairments live in the community.

This can involve risk. A frail elder who lives alone may fall. A young adult with developmental disability and spasticity may aspirate and choke. If the elder loves her apartment, and the young adult takes great pleasure in his meals, clinicians and family members have to ask - how much risk is acceptable?

Bob Master, an internist who has been caring for vulnerable and neglected populations for decades and co-founder of CCA introduced me to the concept of "dignity of risk." Like all really good ideas, it seems obvious.

Robert Perske introduced the concept in his 1972 article. (The article is available on his website.) At the time he was Executive Director of the Greater Omaha Association for Retarded Children. After visiting programs in Denmark and Sweden, Perske wrote about the potentially negative impact of the natural wish to protect those with retardation:

...overprotection endangers the retarded person's human dignity and tends to keep him from experiencing the normal taking of risks in life which is necessary for normal human growth and development.

The world in which we live is not always safe, secure, and predictable. It does not always say “please” or “excuse me.” Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days. To deny any retarded person his fair share of risk experiences is to further cripple him for healthy living. Mentally retarded persons may, can, will, and should respond to risk with full human dignity and courage.

It is the author's firm belief that we now need to insure this dimension of human dignity for the mentally retarded and prepare them for facing real risk in a real world. Where many of us have worked overtime in past years to find clever ways of building the avoidance or risk into the lives of the mentally retarded, now we should work equally hard to help find the proper amount of normal risk for every retarded person. It is hoped that this paper has helped to illustrate that there can be such a thing as human dignity in risk, and there can be a dehumanizing indignity in safety!

In retrospect I realized that I'd applied the dignity of risk concept throughout my psychiatric career, though not by that name. As an example, meeting with a patient with schizophrenia and his family, if the patient had behaved in a rude or inconsiderate manner, I might say "Just because Joe has schizophrenia doesn't mean that he won't sometimes act like a complete jerk the way the rest of us do." The Joes of the world generally preferred being criticized for acting like a jerk rather than being indulged as an impaired person who couldn't be expected to do better.

Suicidality posed a tougher challenge. A patient with acute suicidal intent accompanied by a plan, available means, clinical depression, and a history of suicidal acts obviously requires hospitalization. But some people with chronic depression are chronically suicidal. The goal - curing the depression - can't always be achieved. What then? The situation required assessing with the patients and their families what their goals for life were and how much risk they were prepared to tolerate. Sometimes living with a recognized risk seemed better than making elimintion of risk the primary goal.

Doctors and nurses in the CCA program deal with trade offs between risk and quality of life on a daily basis. The Hippocratic precept - first, do no harm would seem to imply a very cautious approach, but only until we consider Perske's comments about the potential for human dignity in risk and the risk of dehumanizing indignity in safety!