Is this doctor hitting on his patient?

I recently received a very thoughtful email from a reader. I'm posting it here (slightly edited) with permission from the writer:

I recently stumbled across your very helpful and insightful blog. I had a question that I thought you might be able to help me with. I was wondering if you could possibly cover something on appropriate boundaries in the doctor/patient relationship.I have seen a few pieces on obvious violations of this (romantic and/or sexual relationships where the doctor clearly took advantage of a patient), but I was more curious about the grayer areas, where doctors may be a bit too familiar with their patients.

I ask because I saw a male OB throughout a recent pregnancy. He was quite attentive, very competent, and overall a wonderful doctor. However, sometimes he made comments that took me off guard and I was never quite sure how they were relevant to my medical care. For example, he asked if my husband still got erections and later asked me to describe how I felt when I had an orgasm. On one hand, I could see how questions regarding sexual activity during pregnancy are pertinent, but never before has an OB asked me these questions during a pregnancy. The questions seemed a little odd to me, but I also wonder if perhaps this OB is just much more thorough in his care than my previous one.

I'd appreciate any light you could shed on the matter of grayer areas in the doctor/patient relationship.

What a terrific - and important - question! Here's my reply:

As you say, the questions your obstetrician asked could be relevant to your obstetrical care, but they could also be part of an effort to see if you might be sexually/romantically available. As a general rule of thumb, when the medical relevance of questions physicians ask isn't obvious, we should explain why we are asking the questions. Not having done that, your obstetrician created a situation in which a reasonable patient might wonder "are these questions part of good medical care, or is the doctor 'coming on' to me?" 

I think the most we can say is that the obstetrician might have been committing what in medical ethics language would be called a "boundary violation." If that was his intent, it was clearly a breach of professional ethics. But if it was not his intent, he failed to make clear why the questions were relevant. For example, he might have said "In my experience, it's not uncommon for couples to encounter difficulties with sexual intimacy during pregnancy...." But it's still unclear what the relevance of your experience of orgasm would be to medical care, unless you had brought up a concern of your own, or if he had said something like "I'm trying to learn about sexual relationships during pregnancy, so if it's OK with you I'd like to ask you..."

Ideally, patients will ask for clarification when they're uncertain about what we are asking about or doing. But in my practice there were times when I thought I was being clear but learned that I had inadvertently confused my patient. The power imbalance in the medical relationship means that physicians can't rely on patients to ensure clarity. Your email shows you to be a very clear thinker, but apparently you didn't feel comfortable saying something like "Could you explain how that question relates to my obstetrical care?"

If a resident or colleague asked me if it was OK to inquire about a partner's erections or the experience of orgasm in the course of obstetrical care, I would (1) ask about the relevance of the questions to the patient's care and, if there was clear relevance (2) recommend that the physician explain why he was asking the questions, to avoid generating the kind of concerns you experienced.

So, in  answer to the question of whether your physician was committing a boundary violation, my response is that it's possible that he was. We know from patient reports that sexual exploitation is often preceded by suggestive/ambiguous comments that in retrospect appear to be "testing the waters" or "dropping hints." But it's also possible that the questions were entirely relevant to his objectives for your care. If that's the case, he was "guilty" of poor clinical communication.

Thank you again for your very valuable question! 

 

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.]

Bringing the Best of Religion into Medicine

Yesterday I went to the funeral of my older daughter-in-law's mother. She was a much-loved person who was very active in her church. The beautiful Episcopal ceremony evoked her spirit with love and humor. The minister conducted the service in a spirit of inclusiveness and solidarity. The words from John 14:2 - "In my Father's house are many mansions" - were interpreted as reflecting love of all humanity, not as a promise to believers alone.

For me the service brought out what is best in religion. Three years ago I wrote that all liberal (i.e., inclusive) religions are comparably true and good and all fundamentalist (i.e., exclusive) religions are comparably false and bad. I continue to hold that view.

Even though I'm thoroughly in the secular humanist fold, over the years of medical practice I often found that religious language felt truer to the aims of clinical care than purely secular modes of expression. Here are four examples:

"Omniscient being." In all areas of medicine we often bump up against uncertainty. At times that my patient and I wished we knew what to do or what to expect, I might say something like "if we had access to an omniscient being, we wouldn't have to wonder about XYZ..." The concept of a god evoked our wish for the assistance that a benevolent god would give us, and at the same time, acknowledged our limitations.

"Blessing." Historically, to be "blessed" meant having god's favor. Our perfunctory"God Bless You" when someone sneezes goes back to pre-antibiotic days when sneezing might presage pneumonia and pneumonia could mean a rapid death. Even though I don't believe in a god who might intervene, comments like "let's hope that you will be blessed with better health" felt like a stronger expression of hope and possibility than they would with purely secular phraseology.

"Prayer." Many years ago, a patient of mine who conducted himself courageously despite significant impairment from chronic schizophrenia, ended an appointment by asking me to remember him in my prayers. Without thought or hesitation, I said I would. I took my patient to be requesting that I care about him deeply and feel for him  what I've written about as "the right kind of love between doctors and patients." Since I did feel that way about him I felt I was speaking truth in committing myself to remembering him in my prayers.

"Calling." In its original meaning, a "calling" came from god in the literal form of god's voice. The clinicians I respect most among physicians, nurses, social workers, and other health professionals ("profession" is another term that comes from a religious context) all think of health care as a "calling." Many religious clinicians understand the calling to health care as a call from god - literally, to do "god's work." But when I've used the concept of "calling" with first year medical students in the ethics class, it gets a mixed reception. For some it rings true. They feel "called" to a sacred profession, whether they're believers or not. But others have chided me for being too moralistic. For them, medicine is a "job." I don't try to talk them out of this view, but I do suggest that when they're with patients at the bedside, the "job" may be transformed into a "calling."

When my mother experienced the cerebral hemorrhage from which she died a few days later, the ambulance took her to a Catholic hospital. I was impressed and comforted by the spiritual wisdom of the care she and her small family (me and my father) received, especially from the nurses. And when I visited the Swami Vivekananda Hospital in Saragur, India, in 2009, I learned that twice a week they conducted a non-denominational prayer service for patients and staff. Religious language and "liberal" religious practice make superb partners for the enterprise of health care!

Physicians as "Counsellors"

One of my favorite moments in music is the spectacular chorus in Handel's Messiah:

For unto us a child is born, unto us a son is given, and the government shall be upon His shoulder; and His name shall be called Wonderful, Counsellor, the mighty God, the Everlasting Father, the Prince of Peace. Within the chorus, I find the word "Counsellor" especially moving. An article I recently read in JAMA - "The Physician's Counsel" - helps me understand what moves me so powerfully. The author, Donald Misch, tells how at the end of his mother's life, he was the decision-maker for whether to prolong treatment or "pull the plug." He felt an intense need to talk with his physician, who was also a friend, about the decision:  I did not need another physician to assess the situation intellectually and medically, and yet it was clear that my [physician] friend’s words were critically important to me. I needed a physician’s counsel to let my mother die. This was true even though I was, and am, a physician, dually trained  in internal medicine and psychiatry, and I had on many other occasions helped other families struggle with similar decisions. I needed a physician—not simply other family members or friends or advisors (although all of these were helpful as well)—to tell me that under the particular circumstances of my mother’s situation, my conclusions were reasonable. Because all decisions about significant others in one’s life are laden with emotion, conscious and unconscious meaning, and history, I needed to be sure that my motives for making this irrevocable and lethal decision were not contaminated by my longstanding conflictual relationship with mother. I needed a physician to assure me that my judgment was consistent with my mother’s wishes and her best interests. I've often written about health care as a "calling." (For examples, see here, here , here, and here.) I think the need Dr. Misch felt reflects the patient's side of what "calling" means. When we're feeling vulnerable we long for a "Counsellor." In Christian faith, it's "the mighty God, the Everlasting Father, the Prince of Peace." In health care it's the caretaker who we trust and rely on. Many years ago a religious couple from another state came to see me. A friend who they trusted had been my patient, and gave them my name. Their daughter was involved with a man who was less religiously observant than they were. They asked me - should they cut off contact with their daughter? I was startled. This wasn't the kind of issue I was accustomed to dealing with in my psychiatric practice. I asked why they didn't consult their pastor at home. They said, "he's new, and we don't respect him." After a moment of internal debate I decided to accept the "Counsellor" role they had given me. Was their daughter's potential spouse an honest seeming person? Yes. Was he a drug user? No. Did he treat their daughter well? Yes. Was she happy? Yes. After some more discussion I gave them my counsel. They should not sever ties with their daughter. The family relationship was more important than their views of proper religious practice. The woman in the couple jumped up. "See - that's what I told you!" Her husband looked a bit crestfallen, but accepted my advice. I never saw them again, but 10-15 years later I heard indirectly that their daughter was happily married to the man I'd been told about. Dr. Misch's article reminded me of another - Dr. Franz Ingelfinger's 1977 medical ethics lecture, unfortunately titled "Arrogance." Dr. Ingelfinger, editor of the New England Journal of Medicine and one of the world's experts on esophageal cancer, developed esophageal cancer. He tells us that 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 dominate, 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." Medical practice has its mundane moments, but at it's best it embodies what the chorus in the Messiah is singing about. What a privilege it is to be allowed to be a "Counsellor"!

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Medical Scribes and the Patient-Doctor Relationship

I'd heard and read about the practice of bringing "scribes" into the exam room to allow the doctor to relate to the patient rather than to the keyboard. But I hadn't experienced the phenomenon until last week. 

Prior to my appointment I was told that the physician I was about to see (my primary care physician has been ill, and I was seeing a physician I'd never seen before) worked with a scribe. Would that be OK with me? It was. The medical issue involved my big toe and foot, and didn't feel enormously personal.

The photo (it isn't me) shows the scribe interacting with the laptop but clearly in the patient's line of vision. At my appointment, when I looked at the scribe he was looking at me - we made eye contact. He said nothing verbally or via facial expression, but was clearly a third person in the office. Since the focus of the examination was my foot - not a very personal exposure - and the questions weren't about intimate matters, I didn't mind having a non-clinical stranger in the room. But if either of those conditions were different, I would not have wanted the scribe to be present.

The impetus for using scribes is directly related to the electronic health record and the incentives from Medicare (and others) for using the EHR. If physicians are doing the entry, it's either during the appointment or after. Entering the notes during the appointment is more efficient, but leads to the common patient complaint that "the doctor is treating the computer instead of me." But entering the notes after the appointment requires additional time that is not reimbursed and makes the working day longer. 

During my years of psychiatric practice I regarded myself as a devoted clinician. I loved my patients. But from residency on I generally made my notes during the appointment. I found that if I waited until the end of the day I'd forgotten things, and after a busy day of appointments I felt burdened by the additional time requirement. I didn't resent staying later to see a patient with an urgent problem, but I did resent writing notes rather than heading home to be with my family.

I can't believe that voice recognition technology can't make it possible for doctors to dictate notes while seeing patients. It could be done in a way that helped the patient to understand our thinking. From residency on I always wrote my notes with the assumption that the patient would read them. The discipline this imposed was useful. As an example, it helped me in relating to people with paranoia. I didn't write "Mr. Jones is paranoid and delusional," but rather "Mr. Jones believes extra-terrestrials have implanted a chip in his brain. He understands that I do not share this view. We discussed why I believe taking anti-psychotic medication would help him in his life..." 

I found that people with paranoia appreciated that I recognized the possibility that (in this example) extra-terrestrials might be causing mischief, but that I found this extremely unlikely. We could frame using medication as a hypothesis - "whether or not there is a chip in your brain, I believe that you will sleep better and be less afraid after a few weeks..." rather than as the equivalent of "you're crazy and I'm sane so you should do what I say..."

Writing notes with the patient in the office allowed for discussion of what should be said. With someone I'll call Mr. Jones, it had taken quite a bit of time to elicit a clear picture of how much alcohol he used and how alcohol might be affecting his mood and his physical health. I explained why I thought it was important for his primary care physician to know about his alcohol use. We sat together in front of the terminal to compose my note. Mr. Jones baulked at the word "alcoholism," but accepted "alcohol problem." This wasn't just a piece of collaborative writing and editing - it was an integral part of the treatment process.

It seems to me that the burgeoning of medical scribes is a workaround pseudosolution for a broken health care system. Adding a third party to the appointment is better than burning out our physicians - an all-too-frequent occurrence. But the real fix would be a combination of more realistic expectations for documentation and improved electronic health record technology. 

The Right Kind of Love Between Doctors and Patients

Yesterday I attended a remarkable educational session at the Brigham & Women's Hospital - "Love Stories: Deconstructing and Learning from Successful Doctor-Patient Relationships."

The stars of the session were Doris Bunte, who turned 80 this year, and Dr. Chuck Morris, her primary care physician. The large audience of medical students, residents, and staff, were transfixed by their description of their first appointment, the building of trust, and Dr. Morris's presence as a "guest of honor" at a large 80th birthday celebration.

Here's how Ms. Bunte spoke about her relationship with Chuck Morris:

I feel something inviting in you that says you are understanding me; you appreciate what I am going through. You rise to the expectations I have for a physician. You are a partner with me in my illness, helping me look at all possible angles and decisions. I feel very blessed by how closely you watch me. I appreciate your candor even about missteps between us. I value our honesty with each other when things are not working well for me. I feel a warmth. We have a mutual understanding and have never reached anger. Any illness is frightening. I must trust the doctor, especially as a patient who is alone. It is a very important partnership. 

I was happy that the panelists used the word "love" to characterize an optimal doctor-patient relationship. That's certainly true to my own experience in practice. Even before Facebook degraded the concept of "friend," I felt that "love" better connoted the attitude of deep affection, cherishing, and strong wish for the well-being of the other, that doctors should feel for their patients in the context of long term caretaking relationships.

Early in my practice I learned a lesson I've never forgotten. I inherited as a patient a man almost twice my age (I was 35, he was in his 60s) who'd suffered from a serious psychiatric ailment throughout his adult life that had impeded his capacity for work and caused suffering for himself, his wife, and his children. By the time we met his condition was quiescent. I met with him and his wife every month or two, gave what counsel I could, and tinkered with his medications. But at heart I felt guilty - I liked him and his wife, and felt I was doing nothing for them.

My wife and I wrote off for tickets to an event. (This was in the pre-internet era.) I received a letter in response:

Dear Dr. Sabin:

There were no tickets left for this event, but when I saw who was asking, I managed to find two. You've been such a wonderful doctor for my parents that I wanted to do something for you.

Gratefully yours

XYZ

The incident still brings tears to my eyes. At the same time that I was feeling guilty about how little I was doing for my patient, he and his wife had conveyed to their adult child how grateful they were for my ministrations. My "technical" offerings were essentially nil, but the letter I received showed just how much the "soft" element - respecting and caring about my patient and his wife mattered to them.

In retrospect, I'd use the term "love" to characterize the bond between me and my patient, his wife, and even their adult child who I'd never met.

Over the years I've had many discussions with primary care and psychiatry residents about how we can establish clinical relationships that a) allow for the right kind of love, b) don't interfere with our capacity for objective analysis, and c) don't leave us overwhelmed when our patients do not do well. I knew these were longstanding questions in medicine. As a first year Harvard Medical student in 1960 I was in a tutorial led by Dr. William Castle, the eminent hematologist. Dr. Castle, who was 63, described the following dialogue from when he interned at the Massachusetts General Hospital in the early 1920s:

Teacher: Dr. Castle, if you had a patient with pneumonia, and you did ABCD, but the patient died, how would you feel? 

Dr. Castle: I would feel terrible! 

Teacher: Dr. Castle - if you persist in feeling that way, you will have to leave medicine. You would have done everything that we are able to do at this time. You will have to learn to govern your emotions! (reconstructed from my memory)

My current understanding is that there are two key factors in learning how to establish loving relationships within which we are adequately "insulated" so that we can think objectively and withstand the bad outcomes that inevitably occur.

First, role modeling. Dr. Castle was passing on to young medical students what his respected teacher had passed on to him 40 years earlier. Dr. Castle wasn't just a brilliant hematologist. He conveyed to us that he loved his patients. We loved him and wanted to be like him. I repeat his story to students 50 years after I heard it from him.

The second factor is practice. Perhaps establishing the right kind of relationship comes naturally to some. For me it didn't. Sometimes I let my emotions interfere with the needed objectivity. Other times I was too stand-offish. With guidance from teachers, colleagues, and patients, I believe I did better over the years.

I know from observing students that it's a learnable capacity. This was brought home to me years ago when a resident who erred in the direction of being too stand-offish at the start of his training, described a final visit with a patient who was in a nursing facility, close to death from AIDS . At the end of the visit his patient was too tired to sit up any longer but no staff was available to help. The resident picked up his frail and emaciated patient, carried him to his bed, and said a fond goodbye.

That's the right kind of love between the doctor and the patient!

Learning about Aging from Patients and their Children

Last month I wrote about how 13 years after the death of Emily Lublin, a patient with whom I'd had a very warm and constructive relationship, I had contact with her daughter, Langley Danowitz. (I'm using names with Langley's permission.) Emily was more than two decades older than I. I believe she benefited from my attention as a psychiatrist, but I know that I benefited from the insights she offered about aging with spirit and energy.

When Langley and I spoke on the phone she spoke so interestingly about her experience in her 60s (and now, at 70), that I invited her to share her thoughts with others in the blogosphere. A few days ago she sent me this further posting. It's been well documented that physical activity has multiple benefits for the over 65 crowd. Langley brings the research findings down to earth with this personal story:

Fitness and How It Helped Me


To be honest, I am actually 70, as of January. This seems odd, as I feel pretty much the same as when I was 50 and 60, give or take a little stiffness when I get up. I am reminded of the Tin Woodsman’s plea for an oilcan. I hope one day to be able to just spray myself in bed and voila - all the kinks are gone. Is anyone working on this?

Aside from my oilcan hope, I know there is no miraculous fitness method. I started going to the gym late in life – I was 59 and had seen a picture of myself. (My exercise routine for years had been to read the NY Times while doing 15 minutes of leg lifts.) Once I stopped crying, I signed up with a personal trainer for a trial session. I wore my favorite exercise outfit – black ballet tights and a large tie-dyed tee-shirt. My husband photographed me as I descended to the gym in the basement of our building. The trainer was encouraging – she called me “Honey” as in “Honey, just 50 more”, “Honey, what did you eat yesterday?” and “Honey, keep going”. I hated and loved her. She got me started on the Fitness Path and I have never looked back (except when someone’s trying to pass me).

In the 10 years since I discovered fitness, I have tried a variety of exercise, from boxing to Zumba. I started with a personal trainer once a week – now I exercise EVERY DAY. Being a Party Animal, I have found happiness in the socialness of groups. Picture a class – 40 women of varying shapes and 2 guys who either are lost or got dragged in by their girlfriends. It’s like a weight loss meeting – the men are rare and ignored. Before you think I’m a martyr - I should admit that I LIKE exercise. I do it because it’s fun for me and I get to wear cute outfits. Moving my body to commands from an amazing physical specimen just warms my heart – call me strange big time. Many of my newest friends are trainers – I keep showing up for their classes and I guess they appreciate it.

I hope I am inspiring you to give exercise a chance. After all, that is why I’m writing this. If you are just starting, here are Langley’s Five Most Important Tips:

1. Be not afraid to try it.

2. Ask your doctor if you need any restrictions.

3. Join a local gym for a month.

4. Make an appointment with a personal trainer.

5. Try several different classes at your gym to see what you like.

Exercise has totally changed my life – I think clearer, I feel better and I am easier to get along with. Give it a shot and let me know how YOU like it.  All best, Langley

Here's a photo of Langley with her trainer:

In my psychiatry residency, when we overly intellectual twenty somethings asked our training director what we should read to become wise psychiatrists, he said "Listen to your patients...they will be your best teachers!" And when I was dealing with a not very communicative "elderly" man (probably 10-15 years younger than I am now) who became depressed after losing his job at a beer factory, my supervisor advised me to "have him tell you all about what it's like to work in a beer factory all your adult life..." Throughout my entire clinical career I tried to follow their precepts. In retrospect it seems clear that the domains in which I learned most about  life, human nature, and myself, have been family and clinical practice.

But there's always something new to learn. Emily "taught me" about aging before she died 13 years ago. Now her daughter Langley is continuing "conversation" I had with her mother.

What a privilege it is to be allowed to enter human lives as a health professional!

Contact with Families after a Patient's Death

On April 28 I wrote a post to report that the New York Times Ethicist column had taken a quote about doctor-patient sex from this site. The next day I received a phone message from Langley Danowitz, daughter of Emily Lublin, a long time patient of mine, who had died in 2000 at age 84. Emily had a great sense of humor. We had a warm, friendly relationship and very much enjoyed working together on various vicissitudes of her 70s and 80s. At one point Emily said - "you have to promise not to retire before I die." I was sad when she died, but happy to have been able to keep my promise.

Emily and her daughter Langley were close. Over the years I heard a lot about Emily's visits with Langley, who lives in New York. Langley and her husband Jeff conducted a memorial for Emily in Boston, which I attended, and met them there. When Langley saw my name in the New York Times column she called me, to thank me for caring for her mother and to give some news about herself.

When I returned Langley's call we reminisced about her mother, and I heard about how Langley has reinvented herself as an actor when a job she'd been in for 30 years ended. Langley told me she is a "young looking 70 year old," and explained how the advertising industry has used her when they want an athletic, youthful-looking, older person. Since aging is one of the topics I write about on this blog (as well as on Over65, which I co-edit) I invited Langley to write about how she adapted to the end of her long time job. She wrote the delightful piece that follows. I'm publishing it and have spoken in this post about her mother Emily with her permission:

           Part I - Adjusting

Five years ago, when I was (requested to) retire from being the corporate controller (MBA) for a manufacturing company, I was relieved but mostly terrified. After 30 years of non-stop work, I had no idea what I would do to keep myself sane, out of trouble and out of the refrigerator. And although I had always enjoyed the domestic scene, was an avid gym-goer, and had loving family, my life had revolved around the office for as long as I could remember. My 2 thoughts when I got the word were: “you mean I don’t have to come here anymore?” and “omg, now what do I do?” My wonderful husband, Jeff, who had served as Homefront Captain for years, graciously re-introduced me to Laundry and I stampeded into the fray. For weeks, I used my considerable energy cooking and cleaning, organizing and discarding, baking and searing, writing and phoning. Mind you, I was still getting up at 5:30 AM to get to the gym by 6:30 – sleeping in had not occurred to me. Change my Type A style? Never in my mind! Occasionally, I must admit when I raced around my Upper East Side NYC hood, I noticed other gals of an age lunching together and shopping or just strolling…where did they find each other and why did they look so…was it “relaxed”? I wished I had some friends too but – it seemed everyone I knew was still working. Where would I find people to like who would like me too?

Part II – I find a friend

I decided to take up the piano – I’m musical and love a challenge. I hung a sign in our Laundry Room – “Adult student, plays by ear, needs patient piano teacher” and someone penciled on it: “Apt 1222 teaches”. I adopted Friend #1 – my 1982 Kawai console piano, which, as the movers remarked, matches our living room furniture. I found not one, but two teachers, who proceeded to complement and battle each other for my soul. I played in my first recital after 4 lessons – a day which shall live in my annals of terror forever. I basked in the applause and drank lots of wine afterwards.

Part III – I hit the boards

As you can tell, I was learning how resilient I am. So – I finally tackled something I had always wanted to do – become an actor! You should know, I probably came out of the womb taking a bow. After all, I studied Speech at Northwestern and played Little Buttercup in junior high. Now, I had the time to do it professionally – could I? Only one way to find out - headshots, acting resume (somewhat bogus at first), agents – ta dah! As you can tell – modesty is not moi. And, with my physical fitness + energy, I figured that if I said I could do it, I would do it. And now I have the hula hooping (Wellcare Insurance), push upping (Advil) and headstanding (Geisinger) TV credits to prove it.

More to come????

Having the opportunity to know people in depth and work with them on their health and well-being over time is one of the core privileges in being a physician, nurse or other health professional. Thirteen years after Emily Lublin's death I had fond memories of her, and I was moved that her daughter Langley, who I'd only met once, had memories of me from what she'd heard from her mother. Having an opportunity to be once again in the role of Emily Lublin's clinician talking about her with her daughter 13 years after her death is an experience I cherish and feel lucky to have had.

(I couldn't find YouTube videos showing Langley standing on her head in a Geisinger commericial, doing push ups for Advil, or hula hooping for Wellcare, but I did find this tamer video of her in an advertisement for iYogi.

Badmouthing Your Doctor

A headline on the front page of this morning's Boston Globe jumped out at me - "Doctors fire back at patient critiques: Lawsuits target harsh web posts." It tells the painful story of the relationship between Gary Cotour and Dr. Sagun Tuli, neurosurgeon for his late wife Lyn.

Dr. Tuli operated on Lyn Votour to remove cancerous vertebrae. During the second surgery Ms. Votour experienced a stroke. After a stay at a rehabilitation hospital she returned home, bedridden and dependent on a feeding tube. Two years later, depressed and in pain, Lyn Votour asked Gary to remove her feeding tube. He did so, and she died.

Mr. Votour's relationship with Dr. Tuli apparently went well during her acute hospitalization, but after discharge it fell apart. After her death Mr. Votour asked to meet with Dr. Tuli. Here's what he later said about the situation:

I was not doing well with grief. I wanted to go back and talk to Dr. Tuli about some questions that were bothering me. I really wanted to ask her why don’t doctors follow up after discharge. I wanted to understand why doctors just wash their hands after discharge.

The meeting Mr. Votour wanted never happened. Dr. Tuli claims that a hospital lawyer told her not to meet with Mr. Votour. The hospital denies this and claims that Dr. Tuli "indicated that she was not comfortable meeting with Mr. Votour."

Mr. Votour posted on his blog that doctors at the rehabilitation facility had encouraged him to file a malpractice suit against Dr. Tuli and that he lost his wife "not to cancer but to indifference and egotism."

In response, Dr. Tuli is suing Mr. Votour for defamation, asking for $100,000 in damages.

Whether it was the hospital lawyer's advice or Dr. Tuli's discomfort that led to not meeting with Mr. Votour after his wife's death, that meeting should have occurred. In addition to all of the work that has been done on the benefitial effects of apology, I draw on a personal experience here. Some decades ago I had brief contact with a college age student suffering from severe depression. The student believed that the depression stemmed from stressors, and that returning to school would alleviate the symptoms, as had occurred in the past. After discussion, I agreed with this prediction, but advised the student (I'm deliberately leaving out gender and other identifiers) to seek immediate help if the symptoms recurred. The symptoms did recur. The student sought help as I had advised, but committed suicide in the course of the care process.

The student's family asked to meet with me. We met for an hour or two. They pressed me to explain why I supported return to college rather than immediate hospitalization. After I did so they asked if I felt I had made a mistake. I said that I had thought carefully about the advice I'd given, but that in retrospect I wished I had followed a different course. I expressed my great sorrow about the student's death. It was one of the most painful meetings of my entire career.

Some years later I was contacted by a malpractice lawyer representing the family. My anxiety soared. The lawyer asked me for information, but told me that the family was bringing suit against the college, and had specifically requested that I not be brought into the case.

Given the terrible outcome it would have been entirely understandable for me to have been sued. I believe the heart to heart meeting we had had after the student's suicide assuaged potential bitterness against me. The family may well have felt that I made an erroneous judgment, but they did not feel as Mr. Votour did that the student's death was caused by "indifference and egotism."

The Boston Globe article quotes David Ardia, codirector of the Center for Media Law and Policy at the University of North Carolina, about the impact of the Internet on physician concern about our reputations: 

the Internet has realigned the power structure that existed between doctors and patients, giving patients far more influence than they have ever had. The Web is just chock-full of people commenting on their experiences. Doctors have reacted with a great deal of hostility toward this.

The article led me to look myself up on the rate-your-physician sites. The single patient response on healthgrades gave me the lowest possible grades on every category. I ended my clinical practice five years ago, but if I were still in practice I'd be concerned that 100% of the reviews I'd received gave me a F grade.

Dr. Tuli's suit against Mr. Votour reflects a classical form of "good vs good" ethical conflict. Freedom of speech is a fundamental good, enshrined in the First Amendment. But our public reputations are precious to us, and even a non-verbal critique like the one an anonymous former patient gave me on healthgrades can undermine a career. As unseemly as it is for a physician to sue a former patient, Dr. Tuli will not be the last physician to follow that unhappy route.

(Two examples of enterprises that offer to protect physician reputations can be seen here and here. And, thanks to an anonymous reader, here is a link to the original post that is no longer on the web.)

Pay for Performance vs Intrinsic Motivation

Among the many stories about health care heroes during Hurricane Sandy, this was my favorite:

Allison Chisholm, 46, who works for the Visiting Nurse Service, lives with a frail mother in Park Slope, Brooklyn. When the lights started flickering during the storm on Monday, she had images of her mother falling in the dark. But she also had patients who needed her, including one receiving hospice care in a 12th floor apartment in Chinatown, and one needing an intravenous round of antibiotics in the West Village.

“It was treacherous driving during the hurricane,” said Ms. Chisholm, fitting an intravenous line into the arm of Jill Gerson, 71, who teaches social work at Lehman College in the Bronx. “But it’s just something you have to do as a nurse. That continuity of care helps the healing. I don’t see this as being heroic. I have a conscience. I need to get to sleep at night.”

Ms. Chisholm was responding to intrinsic motivation - her values as a nurse, embodying the tradition associated with Florence Nightingale and Mother Theresa. She wasn't being "incentivized" (one of my least favorite words) by pay-for-performance, unless we regard the threat from her conscience that - like Lady Macbeth - she would "sleep no more" if she failed to put her values into action as a performance management system, as an "incentivizing" force!

Pay-for-performance has considerable face validity. Extrinsic motivation clearly works in vast swathes of the economy. But as my friend Dr. Steffie Woolhandler's recent post on the Health Affairs blog shows, it's  not at all clear that pay-for-performance is effective in domains that have historically rested on intrinsic motivators such as idealism, altruism, and care. Pay-for-performance can increase the behaviors that are being measured, but evidence that these systems enhance patient outcomes is weak or absent. And there is substantial evidence from the behavioral economics literature that monetary rewards can actually decrease motivation for tasks that are intrinsically rewarding.

My own reaction when I hear of programs to "incentivize physicians to do [XYZ desirable clinical behavior]" is decidedly negative. When I began my own fee-for-service practice in the 1970s I took pleasure in including Medicaid beneficiaries, but after a time the burdensome paperwork and inefficient reimbursement process, combined with microscopic fees, acted as a disincentive for doing what I wanted to do, and I limited the number of Medicaid beneficiaries I took on. I didn't need to be "incentivized" but I would have responded well to a reduction of disincentives.

Rats in a Skinner box are "incentivized" by food pellets. But as the interview with Ms. Chisholm reflects, the kinds of caretaking we want to encourage in medicine flows from values, not P4P pellets. Program managers will do better by recognizing, respecting, and supporting intrinsic motivation. This is best done by removing impediments, not by the condescending view of doctors and nurses as reluctant laborers.

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 to 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!

Jekyll and Hyde in Medical Practice

 I've written many times about how doctors who exploit patients sexually can provide excellent care to and be idolized by their other patients. I just learned from my friend Dr. Brian Hurwitz that the same can be true for doctors who murder their patients!

I first met Brian when I spent three months at the King's College London Centre for Medical Law and Ethics in 1992. He was doing an MA at the Centre, and allowed me to spend a fascinating day with him in his general practice surgery. For the past ten years he's been D'Oyly Carte Professor of Medicine and the Arts and Director of the Centre for the Humanities and Health at King's College.

Brian sent me a not-yet-published chapter he's written about Dr. Harold Shipman, the GP who was ultimately found to have been a serial killer who murdered more than 250 of his patients. The chapter included this remarkable quote from the son of one of the patients Dr. Shipman was found to have murdered:

I remember the time Shipman gave to my Dad. He would come around at the drop of a hat. He was a marvellous GP apart from the fact that he killed my father.

Shipman never admitted his guilt and refused to talk with psychiatrists, as did his surviving family. He committed suicide in prison in 2004. Although many colleagues and members of the community where he practiced noted strange occurrences in Dr. Shipman's practice, no one was prepared to draw the retrospectively obvious conclusion - a trusted, beloved physician was killing his  patients!

I think the best comment about people like Shipman comes from "The Shadow," an old time radio detective whose adventures I followed as a child. (The Shadow had the gift of invisibility.)

Who knows what evil lurks in the hearts of men? The Shadow knows!

Patient Autonomy after Death - the Case of Anne Sexton

I hadn't thought about the controversy surrounding Diane Middlebrook's biography of Anne Sexton since its publication in 1991 until I saw a recent Boston Globe article about Dawn Skorczewski's new book about Sexton.

Sexton's first psychiatrist, Dr. Martin Orne, had made tapes of psychotherapy sessions available to Middlebrook, for which he was roundly condemned, as in a New York Times editorial titled "Betrayed: The Poet and the Public":

Anne Sexton likely assumed that the relationship between psychiatrist and patient was as confidential as that between priest and penitent. Anyone who enters therapy does so with that assumption. Confidentiality is at the heart of the process. Betrayal is, or should be, unthinkable.

By taking the tapes, Ms.Middlebrook followed her profession. But by offering them, Dr. Orne dishonored his.

Sexton became Orne's patient in 1956 when she was hospitalized after a suicide attempt. At the time she was a depressed and lost housewife with a high school education. Orne encouraged her to respect her latent strengths and find ways to make her life feel more meaningful. Sexton began to write poetry. Her first book - To Bedlam and Part Way Back was published in 1960. In 1967 she won the Pulitzer Prize for Live or Die.

Sexton's symptoms interfered with remembering what happened in therapy, so in 1960 Orne began to record sessions. Sexton would then listen to the tapes and make notes. This unconventional technique was very useful to her. She continued in treatment with Orne until Orne moved from Boston to Philadelphia in 1964.

But Sexton was never free from the impact of mental illness. On October 4, 1974, a year after separating from her husband of 25 years and being dropped by her third psychiatrist, she committed suicide.

In my review of contemporary comments on Orne's allowing Middlebrook to listen to the tapes, I was impressed with how scathing the criticism was. Dr. Willard Gaylin, Professor of Psychiatry at Columbia and co-founder of The Hastings Center, who I admire but do not know, said:

Doctors have no obligation to history and certainly should not act as a research assistant to a biographer...[Dr. Orne's actions were] a betrayal of his patient and his profession.

And my good friend Dr. Jeremy Lazarus, who in 1991 was chair of the American Psychiatric Association Ethics Committee and is now President-elect of the American Medical Association, commented:

A patient's right to confidentiality survives death. Our view is that only the patient can give that release. What the family wants does not matter a whit.

The position Drs. Gaylin and Lazarus took about Orne's release of the tapes followed from an opinion rendered by the American Psychiatric Association Ethics Committee in 1983:

Question: Can I give confidential information about a recently deceased mother to her grieving daughter?

Answer: No. Ethically, her confidences survive her death. Legally this is an unclear issue varying from one jurisdiction to another. Further, there is a risk of the information being used to seek an advantage in the contesting of a will or in competition with other surviving family members.

 Three years later the Ethics Committee was questioned as to whether this opinion was too rigid:

Question: It seems to me your earlier opinion about revealing confidential information after the death of a patient is too restrictive. Can there be exceptions?

Answer: Theoretically, yes, although such a circumstance has not yet been brought to our attention. As with maintaining the confidences of a living patient, exceptions can be made to protect others from imminent harm or under proper legal compulsion. However, weakening this view reduces our responsibility to living patients who trust us to protect their confidences even after their death.

I agree with the questioner - the 1983 opinion is at best a half truth, and potentially a source of dubious ethical advice.

If the information at question had clearly been regarded as confidential by the deceased person - as by saying "this is for your ears only" - of course the confidence should apply in death as it did in life. But suppose the deceased patient had given no explicit guidance, but had loved and trusted her daughter? If the daughter had asked for information or to talk with the psychiatrist when her mother was living, the psychiatrist would have asked his patient/her mother for guidance. In that spirit, after the patient's death I believe the right thing for the psychiatrist to do is to make the best judgment he can about what his patient would have wanted him to do. Simply treating anything for which explicit anticipatory guidance wasn't given as confidential can result in harms to the living the deceased patient would have wanted to avoid.

That's the thought process Dr. Orne followed with regard to the psychotherapy tapes. In an op ed in the New York Times he wrote:

In 1964, when I left Massachusetts, I offered to return all of the therapy tapes to Anne. She asked that I keep them to use as I saw fit to help others, though she retained a few for herself...In the judgment of all who knew her well, Anne definitely would have wanted the tapes released exactly as was done. What others would see as exposure, she saw as honesty. Sharing her most intimate thoughts and feelings for the benefit of others was not only her expressed and enacted desire, but the purpose for which she lived.

Posthumous judgments aren't infallible. If there's life after death, Anne Sexton's spirit might say - "Doc, you got it all wrong about the tapes!" But Orne made a responsible determination, based on his own direct experience with Sexton, the view of her daughter (the executor), and the views of people like poet Maxine Kumin, Sexton's best friend. That kind of judgment is the best we can do.

What survives a patient's death is our commitment to conducting the relationship in accord with the patient's wishes within the parameters of professional responsibility. If a patient wanted revenge against a family member we wouldn't carry it out. But on the basis of a thoughtful conclusion that Anne Sexton would have wanted Diane Middleton to be able to listen to the tapes, Orne was continuing to relate to his patient in a respectful, caring manner!

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.

Should the Irish Giant be Buried at Sea?

On December 20 the British Medical Journal published a fascinating and important article by ethicist Len Doyal and law professor Thomas Muinzer - "Should the skeleton of 'the Irish Giant' be buried at sea?"

Charles Byrne was born in County Londonderry in Ireland in 1761. It was clear from early in his life that he had a growth disorder. He ultimately grew to approximately 7' 7". Charles, who was from a poor peasant family, became relatively wealthy from being exhibited as a freak. In 1780 he went to London where he entertained audiences and was described as "civilised" and "amiable." But his health deteriorated, and he died in 1783.

Charles was terrified that Dr. John Hunter, the famous surgeon, who was known for collecting corpses to dissect, would lay hold of his body after death. He requested that he be placed in a lead coffin and buried at sea. After his death friends set out to do as he wished, but Hunter bribed them, and his body was removed and replaced with stones. Hunter boiled the body to reduce it to a skeleton, which he exhibited in his own museum, which is now part of the Royal College of Surgeons.

The video that accompanies the article provides a brilliant opportunity for moral deliberation. The authors argue persuasively that Charles Byrnes's clearly expressed wishes ("advance directive" in current parlance) should be respected, albeit belatedly, by burial at sea. But Brendan Holland, a man with acromegaly (Byrnes's condition) from the same area of Ireland, whose pituitary tumor was successfully treated, persuasively argues that if Charles Byrne understood how study of his skeleton has benefited others (by identification of a genetic mutation that predisposes to acromegaly) he would want his skeleton to remain in the museum where further therapeutic research could be done as new methodologies emerge.

The BMJ posed a poll along with the article. As of today, with 700 votes having been cast, 54.3% favor burying Byrnes at sea, 13.4% favor keeping the skeleton for further research but not exhibiting it, while 32.3% would leave it on display.

The video pits Doyal and Muinzer's "respect-for-the-individual" argument against Holland's "respect-for-the-good-of-others" position. Holland imagines that Byrne would have been persuaded by his perspective, a move that - if accepted - undermines Doyal and Muinzer's conclusion. But as they point out, his conclusion about what Byrne would have wanted is purely speculative.

This contest between rights of the dead and welfare of the living came up for me in a consultation many years ago. A clinician whose patient had committed suicide had been approached by his patient's family with a request for information. Their underlying question was - "did X love us?" X had given no guidance about his wishes. I asked what my colleague inferred X would have wanted him to do. He felt that while X knew that suicide would hurt his family, he would not have wanted them tortured by the question of whether he loved or hated them. I suggested that my colleague follow his best sense of what X would have wanted.

But suppose X had expressed hatred of his family and a wish that his suicide would punish them? What then?

I don't believe this question can be answered without much more detail about the circumstances. But in my view the analysis should attend to the wellbeing of the living as well as the wishes of the dead. With regard to Charles Byrne that perspective leads me to favor (a) retaining the skeleton for its further potential for research that would help the living, thereby respecting the welfare of the living, but at the same time (b) using Doyal and Muinzer's argument as the basis for prodding moral reflection, thereby respecting the dignity of the dead.

(Disclosure: Len Doyal was very helpful to me when I was a fellow at the King's College Centre of Medical Law and Ethics in 1992. I haven't seen him for more than a decade, but I think of him as a friend.)

Getting Patients to Think About Cost

Harvard Pilgrim Health Care (HPHC), the not-for-profit regional health plan (Massachusetts, New Hampshire and Maine) where I direct the ethics program, is introducing a rewards program - "SaveOn" - to encourage patients to have procedures like colonoscopy, mammogram, and MRI at facilities that provide the service at lower cost. Patients who use lower cost facilities will receive a check for 10$ to $75. Here's how HPHC CEO Eric Schultz explains the rationale:

"It’s the kind of decision patients aren’t making today because they don’t have the information. Doctors are still referring patients for diagnostics based on the way they’ve always done it, without regard for the cost. But we can’t sit around and accept behavior that drives costs up with little or no impact on quality."

I respect and admire Eric Schultz, and think of him as a friend. But here's what Dr. Rick Lopez, chief medical officer for the group I practiced with for 35 years, and who I also respect and admire, and think of as a friend, has to say about SaveOn:

"I do have concerns about this. When I refer a patient for a test or an imaging, I’m taking into account what the patient needs and I’m referring the patient to a place where there’s quality. And I know that from experience. And, [if something goes wrong with a patient’s care] the doctors are liable."

I understand where Rick is coming from. SaveOn is a disruptive innovation. Rick knows and trusts the radiologists who do imaging studies for his patients and the gastroenterologists who do the colonoscopies. Of course he prefers to use them.

If I'm a lower cost radiologist I'm motivated to do a good job with Rick's patients and to communicate with him. If I succeed everyone wins. I build my practice, the patient gets a direct financial reward, and the referring physicians are happy with my services. And if the specialists Rick prefers are losing referrals on the basis of cost, they may decide to lower their fees.

But who benefits from the savings? Here's what Richard C. Lord, president of Associated Industries of Massachusetts, a trade group representing 6,000 businesses, has to say about SaveOn and the savings it may produce:

"Conceptually, it’s a move in the right direction. We’ve been talking about getting consumers more engaged in making their own health care decisions. Up until now, there’s been no incentive to a consumer to shop around. [But] ultimately the savings should be reflected in premiums employers pay."

For the past 25 years I've thought, talked, and written about the ethical imperative to contain health care costs. Unlike health care, words are cheap, and reams of articles and exhortations have not slowed down the cost curve. Innovations like SaveOn have the potential to be more educative than learned articles. If I see that the MRI I'm referred for may cost $1,000 at facility A and $3,000 at facility B, I'll be prodded to think about value. Perhaps B offers $2,000 worth of additional value, but perhaps not. The crucial thing is for the U.S. population to see questioning health care costs as an ethically appropriate activity, not a moral crime!

(The quotations come from a Boston Globe article. To learn more about how the SaveOn program works, see the website of Tandem Care, the subcontractor who provides the service.)

Why Patients Should Have Easy Access to their full Medical Records

Two articles in today's issue of the Annals of Internal Medicine present research on patient attitudes towards access to their doctor's notes: do they want to read the notes? do they think reading notes could be harmful? and, would they share the material with others? The articles and the accompanying editorial put some flesh onto the often vacuous buzzword "patient-centered care."

One article discusses OpenNotes, a year-long test of giving patients ready access to their primary care physicians' notes at sites in Boston, rural Pennsylvania and Seattle. The other describes a VA survey of patients who use My HealtheVet, the VA personal health record system.

Virtually all respondents believe that having access to their doctors' notes would help them. A minority (fewer than 1 in 6) was concerned that the notes would confuse them or cause worry. In the VA survey, 4 of 5 would want to share aspects of their record with family caregivers and other physicians.

The editorial described of how the M.D. Anderson Cancer Center has given patients and their referring physicians access to the Anderson electronic medical record. Since May 2009 more than 40,000 patients have viewed their records over 605,000 times, and 1,300 referring physicians have accessed the records of their patients over 28,000 times. 84% of Anderson's active patients have obtained access to their records. The editorial concludes:

Any health care organization with an electronic medical record and a secure Internet portal can provide patients and referring physicians with real-time access to medical records from anywhere in the world, opening the door to levels of patient engagement and care coordination not previously possible.

I believe that ready access to our own medical records is an important piece of what patient-centered care will mean in the future. The group I practiced with for thirty five years was using an electronic record when I joined. By the good fortune of having been forced to learn touch typing in middle school, I kept the keyboard on my lap and could look at my patient while making notes. I often consulted them about what we should put into the record. In the future I hope that in addition to having real time access to their records there will be ways for patients to make entries of their own. That's collaborative care!

The OpenNotes team compares the innovation they are testing to a new drug. OpenNotes is approaching a potential policy change in an admirably empirical manner. There's lots of reason to be optimistic about the benefits the intervention will offer, but my optimism is a hypothesis, not an established truth.

Ethics of Physician Self-Disclosure

Shara Yurkiewicz, an enterprising second year student at Harvard Medical School, edited the December issue of the American Medical Association Journal of Ethics, an on-line publication targeted to medical students, residents and fellows. Shara developed a short case that raised questions about physician self-disclosure and asked me to comment on it. It's a fascinating part of clinical practice. You can read the piece here if you're interested.

Shara writes a great blog about her experiences at medical school. You can see it here.

P.S. I didn't choose the title ("Is Physician Self-Disclosure Ever Appropriate?"). It would seem nonsensical to argue that self-disclosure is never appropriate. The important questions are - when is it appropriate and how should we decide?

A Controversial Proposal about Complementary Medicine

A controversial proposal about complementary and alternative medicine (CAM) will be the hot item today and tomorrow at the annual meeting of the College of Physicians and Surgeons of Ontario. Since the College regulates medical practice in Ontario, this isn't a Mickey Mouse discussion!

The College felt it had to create a policy because patients in Canada, like those in the U.S., were voting with their feet - and money - for CAM:

In increasing numbers, patients are looking to complementary medicine for answers to complex medical problems, strategies for improved wellness, or relief from acute medical symptoms. Patients may seek advice or treatment from Ontario physicians, or from other health care providers.

The proposed policy explicitly recognizes a patient's right to decide on the course they want to follow:

Patients are entitled to make treatment decisions and to set health care goals that accord with their own wishes, values and beliefs. This includes decisions to pursue or to refuse treatment, whether the treatment is conventional, or is CAM.

In my psychiatric practice, I heard more than once from patients that their other physicians pooh-poohed psychiatric treatment, especially psychotherapy, with terms like "magic," "witch doctor" and "rent-a-friend." From that experience, I especially liked the way the Ontario College insists that physicians conduct themselves with civility:

The College expects physicians to respect patients' treatment goals and medical decisions, even those with which physicians may disagree. In discussing these matters with patients, physicians should always state their best professional opinion about the goal or decision, but must refrain from expressing personal, non-clinical judgements or comments...about the therapeutic options, or the patient's health care goals or preferences unless those are explicitly requested by the patient.

The fact that many physicians and physician organizations complained bitterly that this standard would "muzzle" them demonstrates the need for making civility and common courtesy an ethical expectation!

The Canadian medical community was especially vehement in its criticism of the way the original draft discussed standards of evidence for CAM. In the eyes of the critics, the College was setting a lower bar of evidence for CAM compared to allopathic medicine. Here's the key passage from the original draft:

Reasonable expectations of efficacy must be supported by sound evidence. The type of evidence required will depend on the nature of the therapeutic option in question, including, the risks posed to patients, and the cost of the therapy. Those options that pose greater risks than a comparable allopathic treatment or that will impose a financial burden, based on the patient’s socio-economic status, must be supported by evidence obtained through a randomized clinical trial that has been peer-reviewed.

To my reading, this statement was entirely reasonable. It's a small percentage of medical practice that's based on rigorous randomized controlled trials. The term "sound evidence" requires explication, but it's the best we can claim for much of what we physicians do. The wording of the revised proposal being discussed in Toronto today makes it clear that the same standard of evidence should be applied to "conventional" and "complementary" medicine. But to my reading it retains an appropriately skeptical view of just how solid the evidence is for what is conventionally done:

Any CAM therapeutic option that is recommended by physicians must be informed by evidence and science, and it must:

• Have a logical connection to the diagnosis reached;
• Have a reasonable expectation of remedying or alleviating the patient's health
condition or symptoms; and
• Possess a favourable risk/benefit ratio based on: the merits of the option, the potential interactions with other treatments the patient is receiving, the conventional therapeutic options available and other considerations the physician deems relevant.

Physicians must never recommend therapeutic options that have been proven to be ineffective through scientific study.

I applied these standards to myself with regard to my treatment many years ago of a patient with trichotillomania (compulsive hair pulling). The literature recommended medication and stated that hypnosis did not work. But my patient didn't want to take medication, and liked the concept of hypnosis, despite what the literature said. We agreed that it seemed relatively risk free, and tried it.

It worked. I didn't see the patient again until 20 years later, when the symptoms recurred. A brief repeat of the hypnosis did the job again. (For a more extensive discussion of the case, see here.) I believe the Ontario College would conclude that the treatment met their standards. I had done the hypnosis, but I hadn't recommended it!

If I were in Toronto today I'd vote to approve the College's proposal. Without demeaning "conventional" medicine it implicitly recognizes the degree to which conventional practice rests on uncertainties. And without using the term "placebo effect" it allows for the provision of interventions - "conventional" and "complementary" - that may well derive their efficacy from the placebo mechanism.

(The proposal being considered by the Ontario College of Physicians and Surgeons can be found on pages 248-275 of the agenda for today's meeting. If you're especially interested in the topic, you can read the original policy statement draft here. A summary of the Canadian Medical Association's criticism of the original draft is here.)