Improving Nursing Home Ethics

A recent conversation with a friend about his father's nursing home experience taught an important lesson about nursing home ethics. Here's the story:

His father suffered from severe Alzheimer's and required full time supervision. A local nursing home that had a mediocre reputation some years back was said to have improved, and the family placed his father there.

The nursing home was in another part of the country, so my friend could visit only intermittently. On each visit he was impressed with the attentive, loving care the residents received.

His father lived in the nursing home for a few years before his death. When my friend made a final visit to collect his father's belongings and to thank the staff, he was invited to look at the nursing record. The final entry said it all with regard to the ethical ethos of the home:

May God grant peace to his gentle soul!

I teared up when he told me this and teared up again as I wrote it.

My friend spoke with the administrator who had turned the home around. He asked how this had been accomplished. Here's my reconstruction of what the administrator told him:

When I came here, we weren't caring for the residents the way I wanted it to be. I made a point of getting to know everyone on the staff in a personal way. I listened to their impressions and concerns about the home, and what they hoped for. I tried to treat everyone the way I would want to be treated, in the spirit we wanted our residents to receive. When I decided who we should build our future around and who had to go, the staff understood what I was doing, and felt I was being fair.

Improving quality doesn't need to be rocket science. My friend's father was cared for the way the staff was cared for. Ethically guided, respectful treatment of staff cascaded through to the residents, right up to the blessing my friend's father received at the end of his life.

Moving Towards a Single Payer in Vermont

If you're interested in Vermont's plan for a single payer system, you'll want to look at an article in this week's New England Journal of Medicine.

According to Anya Rader Wallack, Ph.D., special assistant for health reform to Governor Shumlin, the Vermont program will include "a global budget for health care expenditures, guaranteed coverage that is not linked to employment, and a single system of provider payments and administrative rules."

The health system will be overseen by a new public entity - the Green Mountain Care Board. Here's how Dr. Wallack describes the powers of the board:

The board can wield traditional tools such as fee-for-service rate setting, controls on the acquisition of technology, and reviews of both health insurers’ rates and hospitals’ budgets. However, the law also provides explicit direction to the board to create a global budget for health care spending and develop new payment models that create incentives for providers to stay within the budget.... The board is charged with implementing payment methods that encourage high quality and efficiency and provide the impetus for fundamental changes in the structure of the delivery system. It will apply these methods across all payers, private and public (we will seek permission from the federal government to include Medicare), and will monitor the effects of payment changes on both cost growth and quality indicators. (emphasis added)

The beleaguered Independent Payment Advisory Board (IPAB), created by the federal health reform law, has much less power than the Green Mountain Care Board, but it's under attack as a socialist monstrosity. It's at best touch and go as to whether the IPAB will ever see the light of day.

Our federal paralysis is why states are the most important laboratories for health reform in the U.S.

Vermont is small (625,000), by U.S. standards has a remarkably civilized form of political debate, is the first state to allow same-sex civil unions, and has the only "out" socialist legislator in Washington - Senator Bernie Sanders. It's hardly typical of the current U.S. mainstream.

But Saskatchewan wasn't typical of Canada in 1946, when it passed the first provincial single payer legislation in Canada. It took 38 years to move from the Saskatchewan Hospitalization Act to the Canadian Health Act in 1984. It's easy to pontificate about ethics and policy, but change on the ground takes a long time, huge amounts of work, an iterative political process, and a public learning curve.

A lot of the future of the U.S. health system is riding on the Vermont experiment. If Vermont succeeds, open-minded conservatives (despite what we're currently seeing in debt limit "debate," they do exist!) will kick the tires of Green Mountain Care and conclude that a single payer system doesn't destroy health and human liberty. Vermont represents only 0.2% of the U.S. population, but it may turn out to be the mouse that roared for health system change!

Obesity, Alcohol, Tobacco, and Primary Care

I'm in Vermont, telecommuting and enjoying the Green Mountains while my wife teaches at the Bread Loaf School of English, a Middlebury College program in which students, mainly K-12 teachers, can get a Masters degree in the course of five summers.

Students and faculty have meals in a building that served as a summer Inn a century ago. Last night at dinner two faculty members I was sitting with began to talk about how many Weight Watcher "points" the different foods had. They graciously allowed me to grill them on their experience with weight management. Here's what I learned:

Neither had succeeded in maintaining weight loss on his own. While they did not care for the meetings associated with the Weight Watcher program, both found the weekly "check in" helpful. I probed.

Did they have an extended conversation with the person who weighed them? No.

Was it always the same person? Yes, usually. But they did not appear to find the relationship itself important. It was the public weighing that supported their motivation.

One of the two men followed the recommendation that he keep a daily log of what he ate. This made him more conscious of the act of eating. He'd ask himself - "do I really want to eat XYZ, or am I just on automatic pilot?"

Both had achieved and maintained significant weight loss. Their health (blood pressure, cholesterol) and energy had improved.

We shifted to smoking. One had smoked heavily while in graduate school. A group of friends vowed to quit, and promised to pay the others $50 each if they lapsed. My friend reported - "I was too cheap to pay out all that money, and I haven't smoked since."

I told them how medical education teaches us a lot about how to deal with the downstream wreckage caused by obesity, alcohol , and tobacco, but little about the upstream self-management approaches for prevention. In my own experience as a psychiatrist, I'd learned pathetically little about alcoholism in medical school and residency. Luckily, to prepare myself for teaching primary care and psychiatry residents, I'd gone to a number of AA meetings myself, and, with permission from the groups, took students to meetings. I was able to talk with patients about the embarrassment I'd felt when the receptionist at the entrance to a facility I visited to scope out a meeting asked me where I was going - sometimes it helped them with their own dis-ease about exploring AA.

Every time a patient mentioned an AA or NA meeting I'd get them to describe it. When and where did it meet? Who was the group best for? Who might be uncomfortable there? I'd write down the information and put it into a progressively larger file. Then when talking about AA or NA with patients I was encouraging to explore the program I took out the file and thumbed through it. My sense was that apart from the information it contained, the "evidence" of my serious interest in AA and NA, and the echo of the voices of other patients that came through my notes, often had power.

No companies monitor us for effective referrals to AA, NA, Weight Watchers and other support and self-management programs the way the pharmaceutical industry monitors our prescribing habits. There's no money in it and no high tech glamour.

All there is is the intrinsic satisfaction from helping people improve their capacity to promote their own health and well being!

Writing about Patients (and research subjects)

Last week I read a fascinating book by Charles Bosk - "What Would You Do? Juggling Bioethics and Ethnography."

Bosk's first book - "Forgive and Remember: managing medical failure" - a brilliant field study of surgical training, made him famous when the first edition was published in 1979. I can't evaluate his skills as an ethnographic field worker, but he's a terrific writer.

In a chapter on "Irony, Ethnography, and Informed Consent," Bosk reports the intense distress a genetic counselor experienced on seeing how he'd written about her and reflects on the nature of informed consent in ethnographic research. The ethnographer is not doing an experiment for which the risks and benefits can (and should) be described clearly to those who are being asked to participate. But he describes how ethnography characteristically seeks to "debunk" (his word) conventional social constructions, and he comments that ethnographers often write with irony. (That's part of what makes his writing so engaging.) The chapter reflects on whether the risk of reactions like that of the genetic counselor can be conveyed to folks in the environment the ethnographer hopes to study.

This is a tough question. How many potential "subjects" would agree to the study if the would-be-researcher came to the group and said: "I would like to observe you to understand how you function. I will write up my observations and may well debunk your own views of yourselves and what you are doing. I will write with irony, and you may feel misunderstood and condescended to."

Not many. I'm a great fan of ethnographic literature and have learned a lot from it. But if an ethnographer wanted to study me in action, I'd (a) agree if I had "must approve" rights to review any and all proposed public presentations that could possibly be connected to me or else (b) I would run for my life.

Over the years I've often used experience with patients in writings and lectures. I've applied this rule of thumb to the way I developed the material: The patient's closest friends shouldn't recognize who the story is about, and the patient should feel respected by the way he is talked or written about.

The most interesting experiences I've had in writing about patients involve communicating with other physicians. The group I practiced with used an electronic medical record. If I wanted to write to another physician involved in the patient's care, I often composed the note collaboratively with my patient. In one situation, after a lot of nudging and nagging on my part, a patient of mine finally acknowledged that alcohol was a big problem for him. He agreed that his primary care physician ought to be told. We sat in front of the monitor together. He balked when I wrote "X now recognizes that he suffers from alcoholism." We negotiated and agreed to substitute "X now recognizes that alcohol is a problem for him." The discussion itself was part of the work that goes into the first of the twelve AA steps - acknowledging the problem itself.

I don't know how contemporary ethnographers handle informed consent. Quite apart from what an IRB might say, I would not feel justified in writing about people in any way that could be connected to them without their "sign-off" on what I'd written. That was the agreement for the field work that went into the two health policy books I've written with colleagues. And in the grant proposals for funding the studies we stated that we thought of those we observed and spoke with in the field as "colleagues," not "subjects."

Bosk sees the issue of informed consent in utilitarian terms. Respect for those who will be observed and written about calls for robust informed consent, with full explication of the potential risks of the ethnographic study. But the potential value of the study itself pushes against informing about risks in a way that is likely to squelch the study. I may have misunderstood him, but it looked to me as if he came down on different sides of this equation in different chapters.

Apart from federal regulations about human subjects research, I vote for an open process of informed consent. Discussing risks may indeed squelch promising projects, but my optimistic view is that transparency will, over time, enrich the kind of research Bosk exemplifies so well. Negotiating with those one is observing (or, for clinicians, treating) can itself be a rich source of insight. And for ethnographers, that process may lead to less determination to be "debunkers," and to a writing style that depends less on irony about the subjects to engage the reader. A writer as good as Bosk doesn't require a put-down mode to make the story he tells vivid and alive.

Should Researchers Criticize their Peers in Public?

The Chronicle of Higher Education recently reported that University of Pennsylvania psychiatrist Jay Amsterdam has accused his department chair and four colleagues of publishing an article that was (a) ghost written by a contractor for GlaxoSmithKline and (b) biased in favor of the GSK antidepressant Paxil. Amsterdam complained that the article "was biased in its conclusions, made unsubstantiated efficacy claims, and downplayed the adverse event profile of Paxil." He contends that "data from his study was effectively stolen from him, manipulated, and used in a ghostwritten article" designed "to advance a marketing scheme by GlaxoSmithKline to increase sales of Paxil."

I'm writing this post without any insider knowledge about what's going on in the Department of Psychiatry at the University of Pennsylvania. Dr. Amsterdam's faculty profile, last updated 16 months ago, shows him to be a specialist in treating depression. The Chronicle post reports that he has been on leave since August. Clearly, there's been conflict and turmoil within the department.

In the medical profession, part of our claim to authority and trustworthiness (since I'm a physician, I say "our" not "their") is that we will police ourselves and expose unacceptable performance by colleagues. Over the years we've fallen down on this job. Our tendency is to circle the wagons rather than point the finger!

Whatever the outcome of the investigation that's been undertaken, Amsterdam is setting an important example: speaking truth to power is a fundamental right and responsibility. Another recent example is the spine care experts who published a similar critique of work by colleagues on a Medtronic product that they see as biased and misleading. (See this article from the New York Times on the topic.)

Conservative professionals will warn that publicly airing intraprofessional conflicts will lead to an overly active anti-professional swing in public opinion. Unfortunately, they're right. I wish there were a less going-to-extremes way for public process to proceed. In small groups, with face-to-face contact, it's possible, But in a pluralistic society of 300 million, it's not.

(You can see Dr. Amsterdam's letter of complaint the Project on Government Oversight website.)

Finding Nice Physicians

Here's the opening of a fascinating article in today's New York Times:

Doctors save lives, but they can sometimes be insufferable know-it-alls who bully nurses and do not listen to patients. Medical schools have traditionally done little to screen out such flawed applicants or to train them to behave better, but that is changing.

At Virginia Tech Carilion, the nation’s newest medical school, administrators decided against relying solely on grades, test scores and hour long interviews to determine who got in. Instead, the school invited candidates to the admissions equivalent of speed-dating: nine brief interviews that forced candidates to show they had the social skills to navigate a health care system in which good communication has become critical.

I'm embarrassed to acknowledge that although I've done a lot of interviewing, I'd never heard about the technique Virginia Tech Carilion is using - multiple mini interviews (MMI). Applicants are seen at multiple interview "stations," each of which presents them with a specific problem to to address, such as whether a pediatrician should support parents in their wish to have their baby boy circumcised or whether it is ethical to use unproven alternative treatments with a patient. The interviewer is trained in how to probe responses and in a standard form of assessment. Research suggests that multiple short "biopsies" are much better predictors of subsequent performance in the "soft" or "humanistic" components of medicine than standard interviewing is.

The technique was pioneered in 2001 by Dr. Harold Reiter at McMaster University in Ontario. In 2007 McMaster developed a spin-off company to disseminate the technology. The technique is being used at medical and other professional schools in Canada, the U.S. and elsewhere.

The trend towards MMI promotes medical ethics in two ways. First, it appears to improve our ability to identify applicants who are likelier to end up as humanistic
practitioners - in colloquial terms, "nice doctors." Second, it sends a message to prospective physicians that humane, thoughtful caring about others is a core value for the profession.

I have the privilege of participating in teaching medical ethics to first year Harvard Medical students. I think of the content of our course as a set of tools that a properly motivated physician can apply. I hope that the course itself models a set of attitudes and behaviors that students will want to apply in whatever area of medicine they end up in. But the phenomena for which we use terms like "caring," "integrity," "human decency," and "niceness" are partly hardwired in our nervous systems and inculcated by experience throughout our growing up. Courses can help to hone our humaneness, but the dispositions we have already formed and bring with us count for a lot.

Early in my practice I learned a lesson I've never forgotten. I inherited as a patient a man twice my age (I was 30, he was 60) 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 - liking, respecting, and caring about my patient and his wife mattered to them.

In medical school, a brilliant research hematologist was lecturing to us about a blood disease. He described the genetics, chemistry and physiology of the condition eloquently. A student asked him about what the condition meant to patients afflicted with it, how it affected them apart from physical impacts. In a sarcastic voice the lecturer responded - "This is hematology class! What do you think it is - psychiatry?"

In the intervening years, medicine, and medical schools, have caught on to the clinical importance of kindness and niceness. These attitudes and behaviors aren't fancy, but they matter a lot in determining what medical care can accomplish. It's good news to learn that medical schools are trying to do better in selecting students for these characteristics as well as for their braininess!

(For previous posts on this topic, see here and here.)

A Conservative Judge Finally Gets Health Reform Right

Judge Jeffrey Sutton's finding on the health insurance mandate in the U.S. Court of Appeals (Sixth Circuit) gives hope that the right wing is not totally bonkers.

Before readers flame me for questioning Tea Party theology, here's what David Brooks, the conservative New York Times columnist, wrote about Republicans on Tuesday with regard to the debt ceiling "debate":

...the Republican Party may no longer be a normal party. Over the past few years, it has been infected by a faction that is more of a psychological protest than a practical, governing alternative.

The members of this movement do not accept the logic of compromise, no matter how sweet the terms. If you ask them to raise taxes by an inch in order to cut government by a foot, they will say no. If you ask them to raise taxes by an inch to cut government by a yard, they will still say no.

The members of this movement do not accept the legitimacy of scholars and intellectual authorities. A thousand impartial experts may tell them that a default on the debt would have calamitous effects, far worse than raising tax revenues a bit. But the members of this movement refuse to believe it...

Judge Sutton's conservative credentials are impeccable! He clerked for Justice Scalia in 1991-1992. He was nominated to the court by George W. Bush and confirmed after a contentious debate by a 52-41 Senate vote. His well-reasoned, well-written decision has set conservative ideologues on their heels.

Judge Sutton's reasoning won't surprise anyone who understands the health system. He concludes that health insurance is a national enterprise, appropriately subjected to the Commerce Clause. He further concludes that to expand access while maintaining a market-based approach to insurance, the mandate is required - otherwise we'd all wait until we needed care and only then start paying our premiums. .

Here's how Judge Sutton structures the analysis:

the [mandate] provision regulates economic activity that Congress had a rational basis to believe has substantial effects on interstate commerce. In addition, Congress had a rational basis to believe that the provision was essential to its larger economic scheme reforming the interstate markets in health care and health insurance...our task is to determine whether self-insuring for the cost of health care services is an economic activity, and whether Congress had a rational basis to conclude that, in the aggregate, this activity substantially affects interstate commerce.

He concludes, obviously correctly, that Congress did indeed have a rational basis, consistent with the Constitution and established law, for its conclusion.

And with regard to Tea Party fury at being penalized for the "inaction" of not buying insurance, the Judge, in effect, agrees with David Brooks that the outrage is a psychological symptom, not a rational argument:

...the constitutionality of the minimum coverage provision cannot be resolved with a myopic focus on a malleable label. The vast majority of individuals are active in the market for health care delivery because of two unique characteristics of this market: (1) virtually everyone requires health care services at some unpredictable point; and (2) individuals receive health care services regardless of ability to pay.

...Call this mandate what you will—an affront to individual autonomy or an imperative of national health care—it meets the requirement of regulating activities that substantially affect interstate commerce...No one is inactive when deciding how to pay for health care, as self-insurance and private insurance are two forms of action for addressing the same risk. Each requires affirmative choices; one is no less active than the other; and both affect commerce.

It's very important that Judge Sutton clearly empathizes with the libertarian component of American values. He's writing as a good conservative, not a liberal egghead, and he doesn't like the mandate. But he makes clear that not liking it, even being offended by it, doesn't make it Constitutional invalid:

That brings me to the lingering intuition—shared by most Americans, I suspect—that Congress should not be able to compel citizens to buy products they do not want. If Congress can require Americans to buy medical insurance today, what of tomorrow? Could it compel individuals to buy health care itself in the form of an annual check-up or for that matter a health-club membership?... And if Congress can do this in the healthcare field, what of other fields of commerce and other products?

These are good questions, but there are some answers. In most respects, a mandate to purchase health insurance does not parallel these other settings or markets. Regulating how citizens pay for what they already receive (health care), never quite know when they will need, and in the case of severe illnesses or emergencies generally generally will not be able to afford, has few (if any) parallels in modern life. Not every intrusive law is an unconstitutionally intrusive law. And even the most powerful intuition about the meaning of the Constitution must be matched with a textual and enforceable theory of constitutional limits, and the activity/inactivity dichotomy does not work with respect to health insurance in many settings, if any of them. (emphasis added)

Judge Sutton's opinion supports David Brooks's distinction between rational, admirable conservatism and irrational, often pathological, Tea Party ideology. He places his faith in facts and time, not ideological passion. Hats off to the judge for bringing sanity and thoughtfulness into the health reform debate:

Time assuredly will bring to light the policy strengths and weaknesses of using the individual mandate as part of this national legislation, allowing the peoples’ political representatives, rather than their judges, to have the primary say over its utility.

Is Death Optional?

An old joke speaks to how we in the U.S. think about death:

In India, death is seen as a potential step away from reincarnation and towards Nirvana. In Europe, death is seen as an existential tragedy we all must face. In the U.S., death is seen as optional.

Daniel Callahan, author of "Taming the Beloved Beast: How Medical Technology Costs are Destroying our Health Care System," and Sherwin Nuland, author of "How We Die: Reflections on Life's Final Chapter," (both have written many other books as well) have taken on the American myth of eternal youth in a recent issue of the New Republic. They argue that "the war against death as the highest priority should give way to a new goal: aiming to bring everyone’s life expectancy up to an average age of 80 years (already being approached), reducing early death, and shifting the emphasis in the direction of improving the quality of life of those in every age group. The highest priority should be given to children, the next highest to those in their adult years (the age group responsible for managing society), and the lowest to those over 80."

This is the kind of discussion we need to have in the U.S. in place of the vacuous tit-for-tat between Republicans and Democrats over who loves Medicare the best and who is out to destroy it. Medicare is an amazing achievement for a society in which many, perhaps a majority, agree with President Reagan that "government is not the solution to our problems; government is the problem." Medicare is cherished by its over 65 beneficiaries and by the generation concerned about care for their parents. Medicare's popularity is so deep that it's been known as the "third rail" of American politics since the Clinton presidency. Touch it and you're dead!

Callahan and Nuland can argue for giving priority to children and younger adults because they're both 80. The ordinarily lethal accusation of being "granny bashers" is hard to pin on grandparents themselves. I'd guess that in a forced choice, a majority of Medicare recipients would agree with Callahan and Nuland.

Medicare costs must be brought into line with general inflation. But we won't make progress until our political leaders develop more backbone, and that won't happen until they hear from Medicare constituents themselves. I think the right starting point for that advocacy process is for those of us in the Medicare age group (and that includes me) to demand that Medicare focus more on interventions that promote quality of life and less on costly hi-tech interventions that may forestall death by prolonging deterioration and suffering.

As Callahan and Nuland note in their article, this will require a heightened political and medical awareness among Medicare recipients, and will engender economic losses for those who currently profit from the way health care is provided.

In addition to the New Republic article cited above, the July 3 New York Times featured a letter on the topic from Dan Callahan along with several responses. Among the letters, Doris Fenig writes "We are a very strong lobby. We have a very loud voice. Let’s use it...for 'common civic sense.'" She's got it right!