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 at the time, 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. But 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!

Talking about Suicide

Earlier this week my friend Steve Moffic wrote a powerful post about his experience as a psychiatrist dealing with suicide. He presents a moving discussion of how difficult it was to think and talk about the suicide of a patient he treated in residency. Here's the concluding paragraph of Steve's post:

Legal fears, confidentiality concerns, shame, and stigma are formidable obstacles. But talk we must, for talking—and listening—is a key to prevention and treatment. Any clinician knows that most who survive serious suicide attempts end up being glad they did, if they receive the help they need. They wanted to relieve the terrible psychological pain, not to die. Although the suicide will relieve the pain (as in the song from Mash, “Suicide is Painless”), it can cause intense pain in loved ones. Those left behind need the same forgiveness, relief of guilt, and community support that I received from my supervisors and fellow residents. Like a rock thrown into the river, the ripples of suicide can be mighty and wide. 

In my experience, learning to talk with patients about their suicidal ruminations posed more of an emotional than intellectual challenge. When I first encountered seriously suicidal patients I was tempted to try to "talk them out of it." There were three main ways I considered doing this: persuading them that their problems were solvable; emphasizing the reasons they had for wanting to be alive; and, imagining the impact of suicide on family and friends.

Luckily, wise supervisors pointed me in another direction. The task, they told me, was to find out what made suicide seem like such an appealing alternative. Over the years I learned to probe what I called the "logic" of suicide. What made suicide seem like the right thing to do? What was the source of its magnetism?

I found this approach easy to describe but hard to do. My own temperament is somewhat rigidly optimistic. Some aspects of my growing up were difficult, and in retrospect I believe I learned to see life's glass as half full rather than half empty as a way of warding off depression. My father's brother killed himself when I was 13. I didn't know him well, but I believe that even as a youngster I sensed the pain he experienced. When my two sons were teenagers they teased me about my determined attention to the bright side of life with the term "poptimism."

When I first read The Myth of Sisyphus in high school, I was transfixed by Albert Camus' opening sentence: "There is only one really serious philosophical question, and that is suicide." I thought - "this man gets it" - and underlined page after page. But it took me years of clinical practice to truly "get it." When is a patient's wish to turn off the ventilator a "competent refusal of treatment" and when does it represent a "irrational" suicidal impulse that should be impeded? These are great questions for an ethics seminar, but when I was called upon to make real decisions in real time I learned at a vastly different level.

Thanks to Steve Moffic for so vigorously bringing the importance of talking about suicide into open discussion!

From Faith to Atheism

What would you think was being talked about if you read the following:

"I got to come out...It used to terrify me, what people's reactions would be. But it's been so long now...I don't even care...I slept like a baby last night because I knew I wasn't going to have to live a lie any more..."

This isn't a young gay or lesbian person coming out to the family - it's Teresa MacBain, a Methodist pastor, telling NPR about "confessing " to her congregation that she has lost her faith and is now an atheist.

I interpreted the NPR interview and an article in today's New York Times in light of my Rosh Hashanah post about religion and medicine. Teresa MacBain stopped believing in God, but terribly missed the community solidarity, shared values, and supportive rituals that being part of a congregation provided. While she no longer believed in the divinity of Jesus, she had not lost faith in what she calls “the philosophy of Christ.” She averred that leaving religion did not mean she had left morality - she still adheres to the Ten Commandments, the Golden Rule and other moral teachings common to many world religions.(See this article in Religion News to learn more about how she gave up her theology but retained her moral perspective.)

Here's how MacBain described the loss of her religious community:

“For me, religion was everything, my entire world. All my friendships, connections, family,  all the places I went to deal with difficulties, to do good works, to find resources to raise kids — everything was contained within that environment. I miss that social connectivity, that network.”

Not surprisingly, like a divorced person who rapidly enters a new relationship, MacBain affiliated herself with new communities - such as the American Humanist Association and American Atheists. At a meeting she met Greg Epstein, the humanist chaplain at Harvard, who hired her to be a kind of apostle to help humanists/atheists around the country build a non-theistic form of congregational life. MacBain has left the church, but she's again in a role that is structurally much like the theistic pastoral role she occupied before the lost her faith.

Before I ended my beloved clinical practice five years ago I felt great anxiety. Even though the practice was only a portion of my work life, I felt that it was totally central to my identity. I described my fear in images like a becalmed sailboat or a car that was out of gas. In retrospect I see that it wasn't just ending my psychiatric practice that was triggering the anxiety - it was also fear of no longer being part of my equivalent of a religious congregation - the "congregation of medicine."

I chair the Harvard Pilgrim Health Care Ethics Advisory Group. Typically we have 25 - 35 participants. The group sits in a U and I sit and stand in the open segment of the U. From time to time when I'm calling the group together to start the meeting I have spontaneously and whimsically said "Dearly beloved..." I do have a feeling akin to love for the group and the process we follow. Sliding into language associated with religious practice reflects my underlying feeling that a group deliberating on the values that inform health care is first cousin to a religious congregation.

Insofar as shared religious beliefs provide the glue that unites a congregation in mutual support and a commitment to social justice I feel a kinship with it. But insofar as it claims a unique truth for its theology and condemns those who do not share its beliefs I see it as undermining the health of society.

[If you want to get a sense of Teresa MacBain's pastoral skills, put her name into YouTube and sample some of the videos of talks she's given since leaving the church.]

Religious Ethics and Medical Ethics

The Jewish New Year - Rosh Hashanah – starts this evening, and the New York Times featured a front page article on “Bar Mitzvahs Get a New Look to Build Faith.” The article touched a very personal nerve for me.

Both my parents and all of my grandparents were Jewish, but the family I grew up in was very non-observant. We didn’t belong to a synagogue and didn’t celebrate the Jewish holidays, other than a very perfunctory Seder at my father’s ailing mother’s home in Brooklyn. But at 11 or 12 I asked my parents to send me to Sunday School, an almost unheard of request for a child to make. As best I can recall, I wondered how the universe was created and what my purpose in life should be, and had the idea that religion might help me answer these questions.

They enrolled me in Temple Emanu-El, a large reform congregation that was founded in 1845. I quickly concluded that I’d made a mistake. In class we memorized prayers in a language I didn’t understand, studied holiday rituals, and learned about the history of the Jewish migration to the US. We didn’t touch the big questions I was interested in. When I said I wanted to quit my father asked me to stick it out for the sake of his mother, who was happy at the idea of my having some Jewish education, even if it ended in a confirmation ceremony and not a bar mitzvah.

It’s clear to me in retrospect that I was searching for a community that shared fundamental values and collaborated in actions based on those values. I didn’t find what I was looking for at Temple Emanu-el, but during the summer when I turned 16 (and in the two summers after that) I worked as a counselor at Felicia Madison, a camp that served poor children from New York City. When I got to college I was able to create a combined major in philosophy and psychology – a program that let me explore the kinds of questions I had in mind in asking to go to Sunday School. And I worked as a volunteer at a public mental hospital, which led to a career in psychiatry and medical ethics.

I believe that an anthropologist studying my affiliations would see the involvements with psychiatry and medical ethics as structurally similar to an involvement with religion. I consort with colleagues who share an outlook on the world, values, and a commitment to forms of action. There’s no theology, but it is a community of belief.

The New York Times article describes an initiative by 80 congregations to place more emphasis on values, community engagement, and social action, than on theology and ritual. The problem the congregations are trying to solve is family departure from the congregation as soon as the bar or bat mitzvah has been accomplished.

If I’m forced to define myself in terms of religion I identify myself as “a religiously-minded Jewish atheist.” In my clinical practice I found religious language natural to use – “that’s something to pray for,” “if it happens it will be a blessing,” “XYZ is your calling,” and more. When a patient with chronic schizophrenia asked me to remember him in my prayers I said I would, even though I don’t do anything a religiously observant person would call “prayer.” I felt that his request was for me to care deeply about him and his quest for well-being, and since I did, I felt it was truthful to say I would remember him in my prayers.

At the end of his life my father turned against all religions because he saw them as sources of hatred, slaughter and war. He was thinking of fundamentalist religion. In my view all “liberal religions” are comparably true and good, and all “fundamentalist religions” are comparably false and bad. As I examine the course of my adult life, it’s clear that the calling of medicine has been my version of liberal religion.

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.

Health Care Organizational Ethics quoted in the New York Times

I'm a regular reader ot "The Ethicist" column in the Sunday New York Times. This morning's column started with a rather sordid situation:

My ex-wife is a physician. We divorced when I found out she was having an affair with one of her H.I.V.-positive patients. I feel compelled to tell the state medical licensing board and the professional societies to which she belongs about her affair. My reasons for doing so are that I feel an intense urge to retaliate her breach of trust and that she potentially exposed me to H.I.V. (fortunately, I tested negative). I also know that, as a physician myself, I should report her to protect other patients, so that she may get increased supervision at her workplace and treatment if needed. Should I report her even though my main motivation is revenge? NAME WITHHELD

After dispensing with revenge as a motive ("There’s no moral argument for ruining someone’s life just because she ruined yours"), Chuck Klosterman, the columnist, goes on to discuss doctor-patient sex. I was surprised to find a quote from "Doctor-Patient Sex: Why is it Unethical?", a 2009 post on this blog:

There is, however, a problem here. The fact that your ex-wife had an affair with someone who is H.I.V. positive is not a professional issue (and a physician would be well positioned to conduct such a relationship, as she would fully understand the risks). But the fact that the man was her patient is reason for concern. Personally, I can easily imagine situations in which a doctor could have romantic interactions with a patient and everything would be fine — but those hypothetical possibilities don’t make the practice acceptable. R.M. Cullen, a doctor in Auckland, New Zealand, has written at length about the import of a “zero-tolerance” policy when it comes to doctor-patient sexual relations. Here is the core argument, as interpreted by Jim Sabin, director of the Pilgrim Health Care Ethics Program at Harvard University: “Cullen argues — in my view correctly — that it is not necessary to prove that every instance of doctor-patient sex will be harmful . . . to establish that doctor-patient sexual relationships are unethical. The medical profession can, and should, adopt a zero-tolerance ethical stance based on a) the potential for harm to the patient with b) no offsetting potential benefits for the patient, combined with c) the inevitable harm to trust in the medical profession itself.” In other words, the potential downside is massive, the potential upside has nothing to do with medicine and the social take-away makes every other doctor look sketchy.


So does this mean you should report your ex-wife? If you agree with Cullen’s argument, you should. If you simply want to hurt her, your position is weak and immoral, but the action of reporting her itself remains defensible.

In the past five years I've written 20 posts on doctor-patient sex. These posts have had more than 25,000 page views - not much by internet standards but a lot for a blog with a wonky title and a somewhat esoteric focus. The 20 posts have received 128 comments. I have the impression that folks get to the posts via Google searches when they're concerned with the topic. I assume that was the case with Chuck Klosterman.

Public Learning about ACOs

"Culture beats strategy every time" is a truism in management consultation. The Accountable Care Organization concept is excellent strategy, but it won't get anywhere if our health system culture doesn't support it.

This morning I was happy to see a front page article in the New York Times about how Advocate Health Care is developing its ACO. The article is clear and informative. But the amateur medical anthropologist in me was struck by what the language reveals about the cultural context within which ACOs will thrive or crash and burn. In what follows, snippets from the article are in italics, followed by my editorial comments. I've highlighted key phrases - all of the emphases are mine:

On a stormy evening this spring, nurses at Dr. Gary Stuck’s family practice were on the phone with patients with heart ailments, asking them not to shovel snow. The idea was to keep them out of the hospital, and that effort — combined with dozens more like it — is starting to make a difference: across the city, doctors are providing less, but not worse, health care.

In recent years I've been careful to shovel snow slowly and not to overload the shovel. If I was one of Dr. Stuck's patients I would have appreciated a call from the nurse. But note the assumption that less care is likely to be worse. As a physician who practiced for 43 years my default view is that less is better/more is worse. Many of my colleagues think the same way. ACOs won't succeed unless we can nudge the wider public into understanding that "more" does not equal "better" and "less" is often an improvement!

For most health care providers, that would be cause for alarm. But not for Advocate Health Care, based in Oak Brook, Ill., a pioneer in an approach known as “accountable care” that offers financial incentives for doctors and hospitals to cut costs rather than funnel patients through an ever-greater volume of costly medical services. Under the agreement, hospital admissions are down 6 percent. Days spent in the hospital are down nearly 9 percent. The average length of a stay has declined, and many other measures show doctors providing less care, too.

Insofar as the kind of integrated care ACOs are designed to promote is the right way to deliver care, the changed payment structure is removing a barrier to doing the right thing, not "incentivizing" us like rats in a maze. I don't think I'm alone in finding all the talk about "incentivizing physicians" to collaborate with their patients and colleagues offputting. And if I were a naive patient I'd be suspicious of care that my doctor had to be "incentivized" to provide!

“It’s hard to imagine that you could start from scratch and do this and be successful in three years," said Dr. Lee Sacks, Advocate’s chief medical officer, noting that other systems may find it far harder to flip the traditional fee-for-services system on its head. “We had a running head-start going back to 1995.”

The organizations that joined in 1995 to create Advocate have a 100 year history of faith-based health care. As a non-Christian I found the Advocate mission inspiring. I would be proud to practice with colleagues who shared the values Advocate promulgates. I wish the article had taken the following great quote from Dr. Sacks that I found on the Advocate website:

"There is just a special feeling throughout Advocate Health Care. We regularly recognize those who exemplify our values of compassion, equality, excellence, partnership and stewardship, even though many of them would say that they were just doing their job.”

A piece of cheese at the end of a maze isn't what "incentivizes" health professionals - it's the privilege of being part of a caring profession whose values go back for millennia! The admirable clinicians Dr. Sacks is talking about would be stunned to be told that their comportment reflected economic incentives, not personal mission!

In some ways, accountable care resembles earlier efforts to control medical spending, including the health maintenance organizations that proliferated in the 1980s but fell out of favor, in part because they severely limited patients’ choices. But accountable care differs by giving doctors and hospitals a direct financial stake in saving money and a reason to invest in various programs of preventive care rather than relying exclusively on the fees they would normally earn from providing services.

This snippet tip toes towards getting the culture issue right, but it still misses the crucial point. Capitated payments facilitate investment in programs (and not just for prevention) that are not paid for in our cockeyed fee-for-service/widget-rewarding payment system. But that's not what gives doctors a "reason" to invest. The reason is that it's the right thing to do in light of a mission that even many athiest clinicians regard as "sacred."

So far, Advocate has achieved a small but significant savings of about 2 percent below projected costs, Blue Cross Blue Shield said, but it is not clear whether it can continue to make progress. Already, some Advocate hospital chiefs have expressed fears over losing revenue and warned about the threat to their financial performance. Doctors fret that their incomes may suffer. “We’re doing it because it’s the right thing to do for patients,” said Dr. Stuck, the Advocate family physician. “We’re not making more money.”

Dr. Stuck's point about doing the right thing speaks for itself!

“You’re trying to overlay a payment design onto a benefit model that allows a patient to go anywhere he wants,” said Steve Hamman of Blue Cross Blue Shield, noting that patients can undermine the advantages of the new approach if they ignore the advice or insist on unnecessary tests and procedures. “We can talk all we want about provider accountability and how important that is. But there is a measure of patient accountability that is critical as well.”

For readers who aren't familiar with the ins and outs of the ACO concept, this paragraph is referring to the fact that Medicare beneficiaries who are receiving their care from an ACO aren't "locked in" to the ACO network. If Dr. Stuck's patients want to go to the Mayo Clinic they can do so. This is likely to create clinical, economic and ethical challenges for ACOs. What if the Mayo Clinic does knee replacements better than the ACO? Do we have to refer patients "out"? What are the acceptable ways for ACOs to try to keep patients "in network"? And, most important, how do we engage patients and the public in seeing stewardship of shared resources as a societal imperative they share responsibility for?

We Yanks believe in magic bullets. That's why we have so many drugs in our medicine cabinets and drones in the sky. ACOs, alas, will not magically solve our health "system's" problems of quality and cost. The ACO is a good concept, but it won't thrive without a supportive culture. The otherwise excellent article in the New York Times shows how far we have to go to develop the culture we need!

(See here, here, and here for posts that discuss related aspects of the ACO concept.)

Should You Kill Your Disabled Child?

I've just read a remarkable book about this question: Rescuing Jeffrey, by his father, Richard Galli. I got to the book via "Calling It Quits: When Patients or Proxies Request to Withdraw or Withhold Life-Sustaining Treatment After Spinal Cord Injury," an article assigned to Harvard Medical School students for this week's class on end of life care in the required course on "Medical Ethics and Professionalism."

On July 4, 1998, Jeffrey Galli, 17 at the time, dove into the shallow end of a swimming pool and fractured his neck, injuring his spinal cord in a way that left him quadriplegic and unable to breathe without ventilator support. Richard saved his life by pulling him out of the pool and breathing through his nose. But when Jeffrey got to the Hasbro Children's Hospital in Providence, Rhode Island, and the extent of his injury became clear, Richard and his wife Toby considered whether the right thing to do would be to withdraw treatment and let Jeffrey die.

Galli renders the anguished flow of his thoughts and feelings in admirably spare prose. Not surprisingly for a 17 year old, Jeffrey had given no guidance about he would want to have done in a situation like the calamity he experienced. In his initial state of unconsciousness, and the next few days of impaired awareness, his parents had to make decisions for him. Galli initially felt that Jeffrey - a very physical boy who was not drawn to reading or other forms of "living in his mind" - would not be able to tolerate the helplessness and immobility of quadriplegia. But he recognized that he wasn't a reliable decision-maker. Perhaps he was the one who couldn't tolerate Jeffrey's condition. Galli conveys the way thinking about Jeffrey mixed with projection onto Jeffrey brilliantly. At one point he imagines pulling the plug on Jeffrey and then committing suicide himself!

When Jeffrey started to regain consciousness and began to fathom what had happened, his first reaction was "I want to die." But over the course of the ten days Galli's narrative describes Jeffrey first oscillates between wanting to die and wanting to live, gradually settling on the will to survive.

Galli provides a service to clear thinking by using harsh words to bring out harsh facts. For him the question isn't whether to "withdraw medical treatment from Jeffrey" but whether to "kill Jeffrey." In part, making that choice would have been an act of love - sparing his son from the suffering that he expected would be Jeffrey's fate. But in part the choice would have reflected his own suffering at the loss of a son with mobility. For that reason. "killing" wfelt to him like the right word.

The crucial help Galli received was from a physician whose name he does not give and who was not part of Jeffrey's ongoing treatment. The physician conveyed that the life vs. death decision didn't have to be made now. If Jeffrey decided in the future that life in a wheelchair with no use of arms or legs and no ability to breath on his own was not worth living, he could have the ventilator withdrawn. Galli concluded that letting the treatment proceed was not committing his son to a life of unwanted suffering.

The book is painful to read, but once I picked it up I couldn't put it down.

(Jeffrey completed high school and then college. For an article about him at the University of Rhode Island, see here. For a video of Jeffrey and his younger sister Sarah in 2012, 14 years after the accident, see here. And for a post I wrote about an adult patient with quadriplegia who elected to have his ventilator turned off, see here.)

Keep Sound Minds

In 2008 I blogged about how after Marci Thibault, in a state of psychosis, walked into New Hampshire traffic with her twin sister Danielle's two young children, killing them all, Danielle and her husband Ken formed a not-for-profit devoted to "prevent[ing] similar incidents from occurring by improving society's understanding and management of mental health issues."

Keep Sound Minds, the organization Danielle and Ken founded, is hosting an event in Woburn, Massachusetts, on Saturday evening May 18. I have the privilege of being one of the speakers, along with Ken and Danielle. The event is co-sponsored by the Wellstone-Barlow Mental Health Initiative. David Wellstone is son of the late Senator Paul Wellstone, who crusaded for mental health causes. Ken Barlow is a popular TV meteorologist in Minnesota who recently "came out" about having bipolar illness. (See here for a great interview with him.) Their organization is devoted to de-stigmatizing mental illness. David Wellstone and Ken Barlow will also speak.

I encourage readers to go to the Keep Sound Minds website and to watch the interview with Ken Barlow. And, if you're in the area, come to the event on May 18th and tell folks you know who have a special interest in mental health matters about it.

The Bias Towards Drugs in Psychiatry

Two days ago I posted about the bias towards drugs in treating depressed older patients. The next day the New York Times published a heartbreaking op ed on the same theme by Ted Gup, whose son died of a drug overdose 18 months ago.

Gup reflects with pain on his decision to allow his son to be put on stimulants for what was diagnosed as ADHD. In retrospect, he feels he contributed to his son's ultimate death:

In another age, David might have been called "rambunctious." His battery was a little too large for his body. And so he would leap over the couch, spring to reach the ceiling and show an exuberance for life that came in brilliant microbursts...

No one made him take the heroin and alcohol, and yet I cannot help but hold myself and others to account. I had unknowingly colluded with a system that devalues talking therapy and rushes to medicate, inadvertently sending a message that self-medication, too, is perfectly acceptable.

I had the good luck to have been allowed to outgrow my rambunctiousness. I remember my elementary school report card identifying "self control" as a "special need." I remember as well not understanding why it bothered my parents that when I spoke with them I went through the motions of a baseball pitcher. "Ants in your pants" was the "diagnosis" they gave me. After some years, the ants disappeared. The key interventions came from wise parents, teachers, and sports coaches.

Gup sees how the culture that contributed to the death of his son affects us at every stage of life:

I fear that being human is itself fast becoming a condition. It’s as if we are trying to contain grief, and the absolute pain of a loss like mine. We have become increasingly disassociated and estranged from the patterns of life and death, uncomfortable with the messiness of our own humanity, aging and, ultimately, mortality...Instead of enhancing our coping skills, we undermine them and seek shortcuts where there are none, eroding the resilience upon which each of us, at some point in our lives, must rely.

The young move too fast for our comfort and we give them drugs to slow them down. The elderly move too slowly for our comfort and we give them drugs to speed them up.

The Bias Towards Drugs in Treating Depressed Older Patients

I recently read an article on "How to adapt cognitive-behavioral therapy for older adults" that came to me in Current Psychiatry, a "throw-away" journal (one that comes to professionals free of charge and without subscription, typically containing non-peer-reviewed articles and often replete with advertising). The article itself was excellent, but the opening paragraph was revealing in terms of the problematic way psychiatric treatment is typically framed nowadays:

Some older patients with depression, anxiety, or insomnia may be reluctant to turn to pharmacotherapy and may prefer psychotherapeutic techniques. Evidence has established cognitive-behavioral therapy (CBT) as an effective intervention for several psychiatric disorders and CBT should be considered when treating geriatric patients. (emphasis added by me)

Perhaps as the spouse of a college English teacher I'm overly fussy about language, but to my eye this paragraph gives drugs the position of privilege in treating elderly patients with the common symptoms of depression, anxiety, or insomnia, and relegates psychological interventions like CBT to "be considered" if drugs are rejected. Readers wouldn't guess that the National Institute for Health and Clinical Excellence (NICE) guideline on treating depression in adults recommends various applications of CBT as the first intervention for subthreshold depressive symptoms or mild to moderate depression. Drugs only come in later (except for more severe depression)!

Outcome studies suggest that CBT is at least as effective as medication for mild to moderate depression. Given that medication side effects can be especially problematic in an elderly population, why the bias against psychosocial interventions? I see four main reasons:

1. From non-stop pharmaceutical marketing to physicians and the public, we associate drugs with images of butterflies, sunshine, smiling faces, and other seductive visions. The multi-billion dollar marketing campaign synergizes with our wish for quick and easy fixes to our problems.
2. Ageism, as reflected in aphorisms like "you can't teach an old dog new tricks," promotes the belief that elderly folks are too set in their ways to change by psychological means. Empirical studies show this isn't true.
3. Non-mental health clinicians may worry that they aren't adequately skilled at providing CBT or other psychosocial interventions like my primary care colleague years ago who said, in unintended verse: "I know what to do when they're dying/But not what to do when they're crying."
4. For harried primary care physicians (the likeliest group to see elderly patients with mild depression) writing a prescription takes much less time than initiating a psychosocial intervention.

Lack of skill and the crunch of time are serious impediments. But they're not insoluble. CBT has been adapted to self-guided formats. Non-mental health clinicians and aides have been trained in basic CBT approaches. And CBT has been delivered by telephonic means.

The degree to which we favor drugs over psychosocial treatments ultimately reflects a form of bias. That's why I discuss it in a blog about ethics!

(For an example of how our national tilt towards mechanistic thinking about human process affects another age group, see yesterday's New York Times article reporting that 11% of school aged children have been given a diagnosis of ADHD. Stimulants represent a nine billion dollar blockbuster business.)

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.)

A Personal Experience with Medical Cost Containment

When I saw my primary care physician earlier this week he gave me a pep talk about scheduling the colonoscopy I'd been dawdling on doing. I decided it was time to follow his advice.

I had two reasons for being concerned about how much the colonoscopy would cost. First, from the self-centered perspective, my insurance includes a $1500 deductible, so I would be paying some or all of the cost on my own nickel. Second, from the perspective of a concerned citizen, I believe we all have a moral responsibility to (a) take care of our health (b) at the lowest cost to collective insurance funds. If the test cost more than my deductible my fellow insurees will be paying for my charges, and I should consider their financial well-being just as I consider my own.

I'd recently received notice that my self-insured employer offers a service called SaveOn, provided by Tandem Care, a five year old New Hampshire company that gives patients comparative cost information on services within their insurance network. If we're already scheduled to go to a "low cost" provider, we get a $10 reward simply for having called the SaveOn program. If we're scheduled for a high cost provider and choose to go to a lower cost provider instead, we get a reward of $25 to $75, depending on the cost of the procedure.

I receive my care from Harvard Vanguard Medical Associates, a large non-profit, multi-specialty group practice in Massachusetts. I preferred to have the colonoscopy done at the HVMA facility. Doing so would ensure the best coordination of information flow and followup. But suppose an alternative of good enough quality cost $500 less? Would coordination be worth that much additional cost to me?

I called the SaveOn service with some trepidation. The service itself was excellent. A nurse answered my call after one ring. She took my information efficiently and called me back within 15 minutes. Happily, the site I'd been referred to within the group practice was considered a "low cost provider." That spared me the challenge of (a) deciding how much additional cost continuity of care was worth to me and (b) chiding my medical team for being "high cost." The SaveOn nurse told me I'd receive a $10 check after the procedure was done.

Within the cockamamie U.S. health "system," Tandem Care/SaveOn are providing a valuable service. In our consumer role it helps us take care of ourselves at a lower cost. Even if our insurance does not include a deductible - something that is increasingly rare nowadays - the reward for choosing a lower cost provider is enough to matter to us. In our citizen role the program helps us reduce overall costs to the body politic, and, at the same time, educates us to think about costs in health care as we do in virtually every other aspect of our lives.

For decades, we in the U.S. have been searching desperately for ways to make health care less costly. None of the gimmicks we try will work unless we citizens embrace the effort. If we had a national system with a budget paid for via our taxes the way most other developed countries do we'd be invested in getting the most bang for our bucks. But in the highly fragmented "system" we have, the relationship between overall costs and the choices we make as individuals is largely invisible to us. My little experience with SaveOn shows how smart systems can help to make us less stupid about costs!

Using the Web to Improve Care for Depression

I've imagined that if I were starting my career in psychiatry now I'd work at the intersection of clinical care and the web. A recent article on "Web-Delivered Care Management and Patient Self-Management Program for Recurrent Depression: A Randomized Trial" convinces me to stick with my fantasy about what I'd do if reincarnated.

The project was conducted at The Permanente Medical Group in Northern California. Patients with chronic or recurrent depression were invited to participate in a randomized trial of usual care compared to usual care plus a web-based care management and patient self-management program that was available for 12 months. The web program included self-monitoring tools, secure messaging with a nurse care manager, depression education stressing cognitive behavioral methods, a monitored discussion group, a personal database, task lists, and an appointment calendar. Interviewers blind to the treatment condition interviewed the patients at 6,12, 18 and 24 months. Participants could enlist a "care partner" for whom web-based materials were also available.

The outcomes were impressive. The "experimental" group had significantly greater reduction in depression that lasted through the year after the web-based intervention ended. They had more confidence in their ability to cope with the mood disorder and more satisfaction with their care. The intervention itself cost $345 per participant. The nurse care manager logs indicated that a nurse could manage 200 patients in ten hours a week. There was no difference in total medical costs between the two groups.

So why do I write about this on an ethics blog?

In 1994 I was asked to edit a quarterly column about managed care for the American Psychiatric Association journal Psychiatric Services. (I edited and wrote the column for ten years.) Readers probably wanted to read about the evils of managed care, but I felt there was more than enough managed care bashing available, and chose to develop columns on how to manage care in ways that were clinically informed and ethically admirable. My underlying belief was, and is, that managed care, "appropriately" conducted, is the most ethical way to structure a health care system.

The e-care program at Kaiser Permanente took evidence-based components of effective treatment for depression and "re-engineered" them into an efficient web-based format. The medical group carried out the intervention and studied it in a rigorous manner. Their work combined clinical innovation with development of valuable new knowledge. The intervention appears to deliver more benefit at no increase in cost. "Benefit" is a bland word, but anyone who has experienced depression or is close to someone who has knows how much suffering the condition can entail.

There's an ethical imperative for us clinicians to evaluate what we do in order to make treatment more effective and efficient over time. That's what the team at Kaiser Permanente and their colleagues did. It would have been clinically and ethically acceptable for them to have implemented the program without studying its results, but they conducted research along with implementing the program. As a result, we're smarter and have new tools for making treatment better. That's why I write about their work in an ethics blog!

Nonprofit Regional Health Plans

As the US health system moves towards the 2014 launching of health exchanges and other components of Obamacare, regional nonprofit health plans are poised to take a distinctively important role.

An article in today's New York Times described the steps Florida Blue, which covers 4 million Floridians - 30 percent of the Florida insurance market - is taking. The  proposal for a "public option" like Medicare for all that would compete with private insurers crashed and burned in the health reform process, but regional nonprofits like Florida Blue are carrying out the function that was envisioned for the public option. Nonprofits can't function without making a margin beyond their expenses, but their structure allows them to be more mission-driven and locally connected than investor-owned plans.

For much of my clinical career I practiced at the nonprofit Harvard Community Health Plan (HCHP) HMO. My late father, who lived in Florida, know how much I respected HCHP, and asked me if he should join an HMO. At that time none of his choices were nonprofits, and I'd read about various scandals in the Florida market. If he'd been living in Massachusetts I would have encouraged him to join HCHP where I and my family got our care, but I advised him against the HMO route in Florida.

Medical care is ultimately local. It works best when clinicians and their organizations are part of the local community. This passage in the article stood out for me:

“Florida Blue has the same problems everyone else has,” said Dr. Michael A. Wasylik, an orthopedic surgeon in Tampa who works with insurers through the Florida Medical Association, but “they have a better trust relationship with doctors.” The local representatives are better able to address doctors’ concerns, he said.

Health reform won't get anywhere without enthusiastic participation from the clinical community. Insurers can facilitate reform, but they can't make it happen. Engagement with the local community, and above all the kind of trust that Dr. Wasylik refers to, are key. If the national for-profit giants can compete successfully with regional nonprofits like Florida Blue, more power to them. But if the narrow margins and need for highly collaborative relationships with the clinical community make Obamacare an undesirable business opportunity, regional nonprofits like Florida Blue will flourish.

Ignoring Families Can be Fatal

Yesterday in Heathrow Airport on my way home from Singapore I wrote a post about how US medical ethics ignores families and overemphasizes individual "autonomy." When I got home I read a painful story in the New York Times that confirmed the potential harm from the way ethics and law lead clinicians to treat individuals as isolated units: "Drowned in a Stream of Prescriptions: Addict's Parents Couldn't Halt Flow of Attention Deficit Drug.

Richard Fee, an intelligent, popular student who hoped to go to medical school, became addicted to stimulants in college. He faked symptoms of ADHD and received increasing doses of stimulants over a two year period. He ultimately became psychotic, and when the stimulants were stopped, became depressed (not unusual during stimulant withdrawal) and hung himself. The central points of the story are (1) how psychiatry has degenerated into brief "med checks" in which prescriptions are written without adequate thought about what's really going on and (2) how the pharmaceutical industry has succeeded in pushing medication use way beyond what good health and good practice call for.

But having just come from a conference on  "The Ethics of Family Involvement in Healthcare," I was transfixed by what happened when Richard's father, who was terrified about his son's deterioration, and who understood the addiction problem, tried to talk with Richard's psychiatrist: 

In late December, Mr. Fee drove to Dominion Psychiatric and asked to see Dr. Ellison, who explained that federal privacy laws forbade any discussion of an adult patient, even with the patient’s father. Mr. Fee said he had tried unsuccessfully to detail Richard’s bizarre behavior, assuming that Richard had not shared such details with his doctor.


“I can’t talk to you,” Mr. Fee recalled Dr. Ellison telling him. “I did this one time with another family, sat down and talked with them, and I ended up getting sued. I can’t talk with you unless your son comes with you.”

Mr. Fee said he had turned to leave but distinctly recalls warning Dr. Ellison, “You keep giving Adderall to my son, you’re going to kill him.”

I heard about situations like this again and again during my years of psychiatric practice. Whereas in Singapore respect for the family can lead to ignoring the patient, in the US respect for the individual can lead to grotesque stonewalling of the family. Dr. Ellison was not wrong that privacy laws emphasize the individual's right to privacy and to control access to information about him, but skillful clinicians learn how to (a) recognize the law but (b) do what's right for the patient. Law precluded Dr. Ellison from giving information to Richard's father, but it did not preclude listening to his father, explaining why he would not give out information without Richard's permission, thanking the father for his concern, and creating an opportunity for further connection.

Years ago I had a patient who (a) was in a suicidal crisis, (b) hated the hospital and had not benefitted from previous admissions, and (c) had responsible, caring friends who (d) were able to provide support and (e) would want to do so. My patient and I had a version of the following dialogue:

Patient: I won't go to the hospital!
Me: I don't want you in the hospital, but we have to keep you safe, and we'll need help from XYZ.
Patient: You can't talk with them.
Me: Since I know how much you hate the hospital and believe we can get you better without it, I'm going to talk with XYZ, but I want to do it with your permission.
Patient: You can't talk with XYZ - what about privacy and my rights?
Me: Your most important right is to be alive until  your time comes. I'd like to have your permission to talk with XYZ, but I'm going to do it one way or the other...

My  patient ultimately grudging agreed, XYZ came to the office, and we got through the crisis. But I'd meant what I'd said - if my patient had not given me permission I would have contacted XYZ. It made no sense for law to give me the power to impose involuntary hospital commitment but to forbid me from getting help from caring and competent friends without permission.

As Dr. Johnson taught us, the law can be an ass. US laws surrounding informational privacy are well-intended, but they're too simple-minded to apply to all human situations. Richard Fee might be alive if the medical establishment had not treated him as an isolated atom suffering from a deficiency of stimulant medication.

Western Bioethics Ignores the Family

At the end of my stay in Singapore I participated in a conference on "The Ethics of Family Involvement in Healthcare," sponsored by an international research consortium I'd not encountered before but whose mission I was totally in sync with:

Despite many attempts to broaden its ethical gaze beyond the patient-centered focus of traditional medical ethics, bioethics remains strongly individualistic. The patient is treated as a self-interested individual unencumbered by personal relationships, and the principle of self-determination is dominant. However, many areas of biomedicine call for a more relational perspective. This international collaborative project on family ethics is about just that.

In my clinical work I've been very attentive to the family context of my patients, but in my work on ethics it's the neglect of the individual's responsibilities as part of a society that I've attended to. I've argued ad infinitum that medical ethics - especially in the US - has attended too exclusively to the needs and interests of the "numerator" (the individual) without attending to the needs and interests of the "denominator" (the society the individual is part of). In the US that focus has led to wildly excessive health expenditures and neglect of public health and other social goods.

In 1989, during my first visit to India, I visited the psychiatry department at Banaras Hindu University. A resident who was Indian by birth but who'd lived in the US through his teen age years and seemed very American was showing me around. On a hospital ward I saw an older woman combing the hair of young adult patient. I asked about what I interpreted as remarkable nursing care. The resident explained that this was her mother, and that patients were accompanied in the hospital by family members. I then asked a very American question - weren't the patients worried about privacy and confidentiality? The resident, despite having grown up in the US, simply didn't understand my question. He explained that their worry was about not being extruded from the family.

My question showed that I'd been more influenced  than I'd realized by the tendency in US psychiatry to blame the family for the patient's problems. When I trained as a resident (1965 - 1968) and did a fellowship at the Family Studies Unit at the National Institute of Health (1968 - 1970), the concept of the "schizophrenogenic mother" was still widely accepted. When I was responsible for a hospital unit at the Massachusetts Mental Health Center (1970 - 1973), I was concerned that many staff members had a hostile view towards families, and often made them feel unwelcome, and I did teaching sessions about the important role of families as caretakers. But at Banaras Hindu University my reaction focused on fear of not having privacy, not fear losing family ties.

I believe the tendency of US medical ethics to see the individual as an atom of self-interest and threatened rights comes from two main sources - (a) the anti-family tilt of American culture in the last half of the 20th century and (b) an effort to give the patient more authority and power in the patient/physician relationship. This latter aim has led to a beneficial and overdue rebalancing of the interaction between patient and physician elegantly conceptualized in the concept of "shared decision making," but US medical ethics needs to incorporate more recognition of the role of "families of origin" and "families of choice" in the ethical equation.

There's no way to make clinical ethics tidy. Sometimes families are intrusive, hurtful, and even profoundly destructive. Somtimes they are nurturing and crucial for an individual's well being. And, as most of us have experienced, family involvement is typically a blend of delight and exasperation. Sorting out the situation is what makes the health professions so challenging, so important, and so much fun!

Suing your children in Singapore

In the post I wrote yesterday I referred to the tradition of filial piety in Singapore. When I was discussing that topic with a lawyer at the Centre for Biomedical Ethics he told me about Singapore's fascinating "Maintenance of Parents Act," which went into effect in 1996.

The law allows any Singapore resident, 60 years old and above, who is unable to maintain himself adequately, to claim maintenance from his or her children, either in a lump-sum payment, or in the form of monthly allowances. If the parent gives consent, relatives or caregivers may apply for court action on the parent's behalf. Cases (recently there have been about 100-150 per year) are heard by a special Tribunal that decides whether payment should be made and how much it should be, based on criteria including the parent's financial needs and the child's earning capacity and other financial obligations.  The maintenance claim may be dismissed if the children can prove that they were abused, neglected or abandoned by their parents when they were young. The law stipulates that only the basic amenities and physical needs of the applicant including shelter, food and clothing are required.  The maintenance is not linked to the parent’s previous standard of living.The applicants tend to be Chinese fathers, either widowed or divorced.
The law was proposed by Walter Woon, who was a member of the Singapore Parliament at the time and also professor of law at the National University of Singapore.I found his comments about the law very persuasive, and quote them here:

Some critics have said that applying to the court for maintenance from one's children is undignified. I wonder whether it is more dignified to apply for public assistance or to depend on the kindness of strangers. Or perhaps it would be more dignified to starve quietly and without fuss.

Cynics have dubbed this the 'Sue Your Son' law. They miss the point completely. It would be only in a very extreme case that any parent would take his children to court. The effect of the bill, if it becomes law, will be more subtle.

First, it will reaffirm the notion that each individual has a responsibility to look after his parents. It is not society's responsibility. Singapore is still conservative enough so that this idea is not objectionable to most people. The bill reinforces the traditional values of Christianity, Islam, Hinduism and Buddhism as well as Confucianism. It doesn't hurt a society now and then to be reminded of what its core values are.

Second and more important, it will make those who are inclined to shirk their responsibility think twice. As things stand, If a person asks family members or clergymen or the Ministry of Community Development to help him get financial support from his children, the most that they can do is to try to mediate. The trouble with mediation is that the mediators have no teeth. They can exhort, preach, persuade, cajole, plead and even beg. But when push comes to shove, there is currently no way that a son can be forced to support his parents.

But if there were a legal remedy, that would be a different matter. To be sued by one's parents would entail a massive loss of face. It would be a public disgrace. The hand of the conciliator would be immeasurably strengthened. It is far more likely that some sort of amicable settlement would be reached through private mediation if the recalcitrant son knows that the alternative is a public trial. So, one hopes that the fact that such a law exists will make it unnecessary for it to be invoked.

The critics who say that the proposed law does not promote filial piety are right. It has nothing to do with filial piety. It kicks in where filial piety fails. The law cannot legislate love between parents and children and husbands and wives. All the law can do is provide a safety net where morality proves insufficient.

I take a pragmatic view. The law I have proposed won't affect the people who already are supporting their parents, not only with money but, it is hoped, with love and respect. The only ones who need worry are those who aren't living up to their moral obligations. If the law helps even one poor person, I think the effort is worth it.

Many years ago, in what turned out to be the last year of my father's life, I persuaded him to move from Florida to Massachusetts, where I live. He was blind from macular degeneration and needed a supportive living environment - ultimately one with 24 hour nursing care available. I engaged a geriatric care manager to help me (his only child) scope out the options. She told me about maneuvers that would allow him to receive Medicaid support. In the spirit of Professor Woon, I did not want to do that. The care my father  needed was costly, but I could afford it, and it seemed obviously wrong to ask my fellow citizens to support him. If I had refused to pay for his support I hope Medicaid would have come after me, as Professor Woon wanted the Singapore authorities to be able to do.

Setting Limits Fairly in Singapore (2)

I wrote a post yesterday  before I led a workshop for ethics committees or hospital personnel simply interested in the ethics of setting limits in health care . Today I want to write about what I learned from the 25 wonderfully engaged folks I met with and from conversations subsequent to the workshop. Here are my initial observations:

1. One of the three core components of the framework for setting limits fairly that Norman Daniels and I developed is publicity or transparency. On the basis of our observations in the US, Canada, and the National Health Service in England, we argued that those responsible for setting limits (health plans, government agencies) should share the rationale for policies and decisions with the public. In liberal democracies in the west, this stipulation is widely accepted. My impression is that Singapore has more of a tradition of accepting governance by experts and judging their policies by results, without expecting the level of transparency, access and participation that is especially valued in the US. The group I spoke with suggested that the value we in the US place on transparency is not as strongly shared by the population and government in Singapore. To be useful, transparency requires a public experienced in understanding, evaluating, and interacting with policy makers, and policy makers experienced in a reciprocal role. My tentative conclusion thus far is that for transparency to contribute to improved policy making in Singapore, a period of learning or skill development will be required. I did not recommend a sudden shift in practice, but did suggest development of a strategy for how to engage the public in constructive interactions over time.
2. Physicians in the group told me that it's common for families to press for continued "treatment" even when the clinical staff has concluded that comfort care is the right approach. I asked them whether families doubted their clinical assessment or believed that a miracle might occur. Those weren't the reasons. They explained that there is a strong expectation of filial piety in Singaporean culture, and not pressing for continued active "treatment" felt disrespectful and even shameful to the family. They hoped that as advance directive conversations became better developed they will be able to talk with children about "what would your father/mother have wanted in this situation?" Their sense was that as is true in the US, most elderly people would want to shift to comfort care and not be "flogged" by fruitless interventions. Moving to comfort care could then be seen as the way to show true filial piety!
3. As part of our discussion of the family role in setting limits, a participant told us that because of family guilt if they feel they aren't doing "everything," talking with families about options that from a realistic perspective offer no benefit even though we can never say with absolute certainty that they won't be effective for the first time now can cause real harm to families. She described a situation in which a family sold its home to pay for an intervention that in practical terms was "futile."
4. Singapore health policy has been developed to minimize the risk of what they call the "buffet syndrome" - that full coverage creates "moral hazard" and will lead to excessive utilization. Their system of required savings to pay towards one's own (and one's family's) care is very cleverly engineered to confront Singaporeans with the cost implications of their treatment and, at the same time, to try to make sure that they have resources in their savings accounts to pay for their choices. But with an aging population, more chronic illness, and new technologies, middle class families are facing costs they can't reasonably meet. The group cited another instance where in order to finance valuable treatment a family had to sell its home and impoverish itself. This was consistent with what a taxi driver told me - "In Singapore you can die, but you can't be sick."

Because of its good population health outcomes and low public spending (between 4-5% of GDP) the Singapore health system has received great praise, especially from strong believers in the market and "skin in the game." But because of the high payment expectations it sets for its citizens it has been criticized by liberal believers in comprehensive coverage. From my meeting with the workshop participants, and from a subsequent meeting with officials in the Ministry of Health, I believe the praisers and the critics are both wrong. Singapore hasn't found a magic bullet that can be readily transferred elsewhere. But Singapore hasn't created a cold, uncaring system. They're struggling very thoughtfully with the problem every developed economy is struggling with - how to find the optimal combination of communitarian caring for the population with the individuals responsibility for his own health and for the cost of care for himself and his family. What I would praise and want the US to emulate is the combination of thoughtfulness, analytical clarity, and non-ideological deliberation about managing the dilemmas of modern health care.