Should the Irish Giant be Buried at Sea?

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

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

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

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

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

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

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

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

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

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

Adapting to Chronic Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

Getting Patients to Think About Cost

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

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

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

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

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

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

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

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

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

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

Why Patients Should Have Easy Access to their full Medical Records

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

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

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

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

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

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

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

A Personal Experience with Consumer Directed Health Care

I'm agnostic about how effective Consumer Directed Health Care (CDHC) will turn out to be in prodding us patients into acting like discerning, value-oriented consumers. But I'm a total believer in the goal.

As a psychiatrist whose work is now largely in ethics and health policy, I'm interested in the psychological side of how we not-always-rational human beings respond to policy innovations like CDHC. So when I had a little interaction with my own CDHC plan last week, I paid attention.

In the last couple of weeks a longstanding mild medical problem had acted up such that my primary care physician and I decided that a specialty consultation would be a good idea. As a physician I knew it wasn't a medical emergency, though it had preoccupied me enough so that I didn't do any blog posts between December 1 and December 18.

In terms of CDHC, I knew that I'd met my deductible for 2011, so the sure-to-be-pricey specialty consultation would only cost me a $20 copayment, not an arm and a leg, but only if it took place this year. But I doubted that a "routine" appointment would be available before January at best, when the new deductible would kick in.

I was pretty sure I could get an appointment in 2011 if I said it was "urgent." But from a medical perspective it wasn't urgent, and I didn't want to (a) lie or (b) take away an appointment from someone else for whom it would be truly urgent. But at the same time I was peeved at the idea that the consultation would cost me $20 or several hundred dollars (especially if tests were added on, which they may well be), depending on the vicissitudes of schedule. Since I could afford the difference, even if grudgingly, I determined to take the first non-urgent appointment that was available, expecting it to be in 2012.

Still, it seemed odd that "better service" (an appointment in December) would cost much less than "worse service" (an appointment in January or later). That would be like Amazon offering next day delivery for a lower price than routine delivery!

The personal side of the story has a happy ending - the specialist had time later this week.

But I was interested in the way the financial incentive built into CDHC created a potential artifact. It wasn't a big deal, but these real world behavioral impacts are the kind of thing we need to understand and evaluate in assessing policy innovations.

(For an example of research I did with colleagues on the behavioral impact of CDHC see here. And see here for a blog post about how CDHC can work exactly as hoped for!)

The Reform Medicare Really Needs

Between now and the elections in November 2012 we're going to hear a lot about Medicare vouchers - or, in the prettied up term, "premium support." We're finally at the point where no responsible politician denies the need to curtail Medicare costs. And, in recent weeks, Democrats as well as Republicans have been floating different forms of voucher proposals for reining in Medicare costs. "Guaranteed Choices to Strengthen Medicare and Health Security for All," the hot-off-the-press proposal from Senator Ron Wyden (D-Oregon) and Representative Paul Ryan (R-Wisconsin) will get the most attention.

The Wyden-Ryan proposal opens with an on-target diagnosis of how virulent Medicare politics has led to the morass we're in:

Few issues draw more heated partisan rhetoric than the future of Medicare. Seniors are a reliable and powerful voting bloc, and both Republicans and Democrats are guilty of exploiting Medicare concerns to frighten and entice voters..In fact, the more the national conversation about the future of Medicare deteriorates into partisan attacks that our opponents will “cut Medicare” versus superficial campaign pledges to “make no changes” to a 45-year-old program, the harder it gets to have a serious debate about the best way to ensure that seniors can rely on a strengthened Medicare program for decades to come.

The debate about Wyden-Ryan and other voucher proposals is predictable. Republicans and a few Blue Dog Democrats (foreign readers - "Blue Dogs" are conservative Democrats) will fight for vouchers on the basis of free market theology of choice and competition. Yellow Dog Democrats (foreign readers - "Yellow Dogs" are so loyal they would vote for a yellow dog if it was called a Democrat) will fight to keep fee-for-service Medicare as it is, with tweaks to reduce costs.

Both positions are wrong. They ignore the two most important constituents - Medicare beneficiaries themselves and the improvement-minded clinicians who care for them.

We Medicare beneficiaries (I say "we" even though I'm only a Medicare "eligible," since I still have employer insurance) don't want to mortgage opportunity for future generations to pay for the bloated system we have now. The 77% of us with traditional Medicare like the government-run insurance program. The 23% of us with Medicare Advantage plans are happy with private insurance. But we're not happy with the discoordinated care system in which tests are repeated unnecessarily, doctors don't communicate with each other, we get readmitted to the hospital too quickly, and, at the end of life, too often die surrounded by monitors and tubes in the ICU rather than by our loved ones at home. And our physicians and nurses are frustrated by many of the same things.

To get real Medicare reform three things must happen:

1. Medicare beneficiaries must speak out about improving care and protecting future generations by reducing costs. Politicians imagine that we're all "greedy geezers" like the folks who threaten them in the recent AARP advertisement. Some of us are, but it's a minority. Our political leaders won't get serious until they hear from us - their constituents - about what most of us believe and want.


2. Improvement-minded physicians, nurses, other health professionals, and administrators are the ones who know how to wring the waste, estimated to be as high as 30%, out of the care system. Competition won't do it. Vouchers won't do it. Only motivated health professionals can. If you want to understand why this is so, read Don Berwick's recent address to the Institute of Health Improvement.


3. Medicare needs a budget. Creating a budget by adding up the bills for our care won't do the job. If there's a true budget we can work with out caretakers to do what's needed within fair limits. Most of us are on fixed incomes. We know there's no pie in the sky!

For 35 years I practiced and got my own care at a not for profit HMO where clinicians and patients lived within a budget and made the system work. I'd rather see us use patient-physician collaboration as the basis for Medicare reform rather than hope that financial pressure will turn Medicare beneficiaries into health care shoppers who drive costs down. But quite apart from the prevailing conservative faith-based belief that "skin in the game" will inevitably fuel the needed reforms, it's not irrational to fear that politicians won't have the gumption to create and stick to a true budget for Medicare, or to allow CMS to apply sensible management strategies like centers of excellence instead of unbridled fee-for-service. It's that perspective that leads Democrats like Senator Wyden to take up the voucher concept.

But with or without vouchers, with or without either single payer Medicare or multiple competing insurers, the key ingredients of Medicare reform are (1) strong beneficiary demand for positive change, (2) leadership from improvement-minded clinical leaders, and (3) an overall budget for the program. Without this triad we're just whistling into the wind.

Ethics of Physician Self-Disclosure

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

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

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

A Controversial Proposal about Complementary Medicine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Learning from Massachusetts Health Reform

The Blue Cross Blue Shield Foundation of Massachusetts has just published a report on the first five years of Massachusetts health reform. The report provides valuable lessons about how U.S. society can learn to improve access and set limits on costs. It's crucial for us to understanding the learning curve for health reform. Reforming the health system isn't primarily an intellectual challenge. The difficulties are mainly in our own psyches, and among the different players on the health care chess board.

As I see it, the key aspect of Massachusetts health reform is the process by which it came about. Prior to passage of the 2006 law, there were several years of discussions, reports, conferences, committee meetings, and more. From this combination of education, argument and deliberation, what emerged was a consensus that government, employers, and individuals had to share responsibility for making things better. And, at least as important, all that interaction created some trust among the key parties and a culture of civility that is all-too-lacking in the pathetic national non-dialogue on federal reform. The term "Obamacare" is a symptom of the lack of dialogue and civility.

In terms of shared sacrifice: individuals accepted a mandate that we be insured; employers accepted a requirement that they provide insurance or pay into a state pool; and the state accepted responsibility for subsidizing low income folks and for creating a mechanism - the Connector - to administer the new forms of insurance that were made available.

Massachusetts has reduced its uninsured population to 1.9%, compared to the shameful national average of 16.3%. The cost of the subsidized insurance has gone up 3% per year, significantly lower than the national average. Approval of the 2006 law has remained steady at two thirds of the adult population.

Massachusetts explicitly chose to tackle coverage before squaring off with cost. The five year report documents that coverage is relatively "solved." Now the state is turning its attention to cost.

It looks to me as if we're approaching the cost problem the way we approached coverage - with LOTS of talk. We've had multiple reports, all of which say much the same thing - that providers with market clout get paid high prices without delivering comparably superior outcomes, that the entire system has a great deal of waste, and that cost escalation is strangling the businesses, public agencies, and individuals, who pay for care. As I wrote back in March, Massachusetts is the jawboning capital of the western world (see here).

Wise psychotherapists understand that dealing with the resistance to change is the hard part of the work. Once resistances have been dealt with, things get easier. And the late management guru Tony Athos described Japanese management style in the same way - LOTS of process to bring about consensus and then much smoother implementation than we see with our "process-lite" U.S. approach.

I believe, and hope, that what we're seeing in Massachusetts now with with regard to health care costs is creating the human and social infrastructure we need to get a grip on costs. The next report, five years from now, will reveal whether this is true or not.

(The five year report, written by my former colleague Alan Raymond, is very readable. If you're interested in learning more about Massachusetts health reform, take a look.)

Zeke Emanuel on Health Reform

Zeke Emanuel provides an excellent piece of public education about the potential for improved quality of care and cost savings in a recent New York Times blog post. The piece will be especially informative for folks who don't understand how fragmented the U.S. care system has become and how fee-for-service reimbursement promotes the fragmentation. Emanuel concludes, correctly, that there's substantial potential for improving care for patients with chronic illness, and that these improvements can achieve savings for the health system.

But I think Emanuel makes two mistakes in the piece. Both come from misinterpreting the psychological underpinnings of health reform.

First, after describing very lucidly how bundled payments provide financial support for coordination among caretakers, he explains that "the idea is to force all of a patient's care providers to work together." But "force" is the wrong verb here, and it reflects a mistake medical managers make all too often.

Collaborating with colleagues actually makes practice more enjoyable as well as more effective. Working together in ways that help our patients is intrinsically satisfying. When those in charge assume we clinicians have to be "forced" to do something, we buck them. When they facilitate what good clinicians want to do, we do it with pleasure. The idea of global payments is to "allow" and "support" collaboration, not to "force" it!

Second, Emanuel correctly notes that improved care coordination can produce much more savings than malpractice reform. But apart from the question of how much savings a reduction in defensive medicine might produce, the climate of litigation has a corrosive impact on the psychology of medical care and the doctor-patient relationship. In ethics discussions with medical students, residents, and practicing physicians, the first question is typically - "what does the law say - what happens if I'm sued?"

The spectre of malpractice litigation creates a sense that patients and society are potential enemies. Health reform requires collaboration between doctors, patients, and the wider public. Malpractice reform is crucial not just for whatever money it might save for the health system, but for the potential that reform will reduce the degree to which physicians feel under attack.

Public Altruism about Health Care is Alive and Well

Four days ago I discussed Medicare beneficiaries who think about Medicare in terms of future generations and the common good, not just in terms of their own care. That post was triggered by my reaction to hearing this aphorism:

The true meaning of life is to plant trees under whose shade you do not expect to sit.

This morning's Boston Globe included an obituary that made the same point. It told about Paul White, who died at 61 of kidney cancer, after eight years of illness. Here's the relevant passage:

In a life curtailed by cancer there was much to curse, but Mr. White was more apt to speak optimistically about how chemotherapy gave him more time with his five granddaughters and how experimental treatments would provide a foundation for patients he would never meet.

"He just felt he was doing his part," his daughter said. "He kept talking about, 'I'm doing this for the next generation.' I can hear him saying that: 'I'm the guinea pig for the next generation.'"

I've been looking to see if any surveys of Medicare beneficiaries suggest what proportion is moved by concerns about the commons. I haven't yet found what I'm looking for, but I'd predict that it's a substantial number.

The Globe also included this letter to the editor:

Five ways to cut spending on Medicare - from a beneficiary

WHEN SPENDING less on Medicare is suggested, it seems that many people, especially Democrats and those over 65, protest loudly. However, there are ways that Medicare could spend significantly less money without denying anyone medical care that is of value. As a Medicare beneficiary myself, I offer five concrete proposals.

1) Make generic drugs the default for covered prescriptions.

2) Let Medicare negotiate with drug companies on the cost of drugs.

3) Let the Medicare Independent Payment Advisory Board identify medical services that provide little or no benefit, and let Medicare refuse to pay for them, or require significant copayments.

4) For surgery or other major interventions for which there are medically reasonable alternatives, do not pay for those interventions unless patients are fully informed about their alternatives, including no intervention at all.

5) Give providers significant protection from malpractice claims if they can document that patients were well informed before a treatment decision was made.

Congress has made if difficult or impossible for Medicare leadership to take any of these reasonable steps to control Medicare costs. Enacting these reforms could significantly cut Medicare costs with no downside for patients or their doctors.

Jack Fowler

Brookline

The writer is senior scientific adviser for the Foundation for Informed Medical Decision Making. His views here are his own.

Voices like Paul White and Jack Fowler can make an important contribution to our national political dialogue. There's no way to deal with the country's long-term economic health without dealing with Medicare. If enough Americans speak as Paul White and Jack Fowler did it will become harder to argue for the politics of selfishness that our anti-tax zealots are so eager to promote.

Mitt Romney on the Veterans Health System

By temperament I'm an optimist, but Republican pronouncements on health care, like Mitt Romney's proposal for privatizing the Veterans Health system, challenge that stance. Paul Krugman has a powerful op ed on this latest piece of Republican disinformation in today's New York Times.

The Veterans' care system was radically reengineered in the 1990s. It now consistently outperforms the private sector on measures of quality and cost. As Krugman points out, that violates Republican theology. When facts and faith collide, something has to give. Romney isn't dumb, so the differential diagnosis is (1) faith in markets that is so strong he'll deny facts or (2) garden variety political duplicity - (i.e., expeditious lying).

(See this piece in yesterday's Daily Kos for details about the VA program and the Republican knee-jerk assault on public programs.)

Do Medicare Beneficiaries Only Think About Themselves?

This week I spoke with a friend about my conviction that U.S. political process needs a voice from Medicare beneficiaries advocating for a progressive and sustainable approach to Medicare. I told him that although I don't have survey data to draw on, I believe that many of us folks in the Medicare generation are worried about the impact of runaway Medicare costs on future generations. We're not all like the belligerent elders in the AARP advertisement who warn politicians - if you want my vote, don't touch my Medicare.

My friend responded with an aphorism I'd never heard before:

The true meaning of life is to plant trees under whose shade you do not expect to sit.

I do a lot of walking in the woods and love trees, so the aphorism moved me.

I went back to Erik Erickson, to review his interpretation of the stages of life. I discovered that I misremembered his schema. I mistakenly thought Erickson named the healthy approach to aging "generativity." Erickson actually posits that as the virtue for adulthood. "Wisdom" is what he ascribes to the successful 65+ folks. It's opposite is despair.

Erickson may have been on target when he formulated his views 50 years ago, but I think he's wrong for the present. "Wisdom" as he conceptualizes it involves reflecting on the meaning of one's life. That sounds passive and somewhat narcissistic. What I see, and experience, in the Medicare set, is much better described as a quest for "generativity." The question many pose for themselves is - what can I contribute to the world at this phase of life?

Current political dialogue offers two choices for Medicare policy - "don't touch Medicare" or "tinker with the mechanics - raise the age of eligibility or replace Medicare with a voucher to buy insurance."

No one is talking about a cooperative enterprise in which Medicare moves to sustainability via patients and clinicians cooperating to create a more caring, less technological, approach within an overall budget that doesn't saddle the next generations with crushing debt.

There's more than enough money in our current expenditure to provide excellent care for beneficiaries. The way I make the point to knowledgeable friends is to ask - imagine what Medicare would be like if it was guided by the best clinicians from a population-oriented program like Kaiser Permanente!

(The aphorism comes from the title of a book Wes Henderson (1928-2003), a third generation Canadian, wrote about his father Nelson. It's the advice Nelson gave Wes when Wes graduated from high school.)

Sister Margaret McBride Speaks Out

Fundamentalist certainty is an understandable, but dangerous, stance in a world that William James famously described as a "one great blooming, buzzing confusion." Believing that our "truths" are true for all, and that disagreement is iniquity, is simpler than dealing with the diverse views of seven billion fellow humans.

Last year Sister Margaret McBride was excommunicated for her role at St. Joseph's Hospital in Phoenix in allowing an abortion to be done to save a pregnant woman's life. In her first public comments since Bishop Olmsted pronounced her excommunication, she told the Arizona Republic (by email):

"My journey over the past year has led me in many directions, but ultimately to a new understanding of forgiveness and mercy...Whether we are talking about my situation, the state of the church or society in general, I believe that forgiveness and mercy are extremely important for each of us...

Our important mission to our community has not changed. This is an extraordinary place with people from every religious background doing the impossible every day. At the heart of St. Joseph's is still our commitment to caring for the poor and ill in our community. Each employee is an inspiration to me every day in carrying out the mission of the Sisters of Mercy," (McBride's religious order, which is active in education, health care and social service worldwide).

According to the article, "sources" report that Sister Margaret has "resolved" her excommunication by going to confession.

Here's my guess about what "resolved" means.

When I did my psychiatry training in Boston, we learned which priests were likely to absolve depressed patients for "sins" like masturbation and which were likely to reinforce what we saw as pathological guilt.

I hope that Sister Margaret has been absolved and recognized as a good Catholic by a wise priest!

(For previous posts on St. Joseph's Hospital and Sister Margaret McBride, see here, here, here, here, and here.)

Union Health Plans and Health System Ethics

On November 1 I blogged about how much I looked forward to meeting the next day with union leaders responsible for overseeing union health plans.

As I'd anticipated, the union leaders evinced a strong sense of solidarity with the insured population and, at the same time, a strong sense of the economic realities of the insurance fund. I presented a diagram I've often used to convey my view of the ethical framework that - ideally - patients, clinicians, purchasers and other stakeholders would use in their dealings with the health system:The idea that we should approach the health system committed to both fidelity to the needs of the individual and stewardship of the resources available for the care of the group was intuitively obvious to the group, as did the metaphor of numerator and denominator that I also like to use::Bringing about a health "system" that is more effective, equitable and efficient in a nation of more than 300 million and a bitterly divided national political process requires won't happen without multiple local initiatives. Oregon, Massachusetts and Vermont show what individual states can do.

The union leaders taught me that union health plans can make important contributions to the national learning curve. Unions are about solidarity on behalf of shared interests. As a population we should be solidly unified on behalf of achieving the best health we're capable of. Sadly, we're not. Union health plans provide a venue in which substantial components of our population are committed to the well-being of each person and, at the same time, to being realistic about how much resource can be devoted to health care. What they learn and demonstrate can help us all.

Can We Afford High Cost Pharmaceuticals?

I'm in New Orleans, to meet tomorrow with a group of union leaders who oversee union health plans. They will have read, or at least - I hope - glanced at "Setting Limits Fairly," the book in which Norman Daniels and I presented the "accountability for reasonableness" framework for curbing unsustainable health care costs.

I'm excited at the prospect of working with union leaders. For them the constituency in the health plans they oversee are fellow union members, not impersonal "covered lives," the unfortunate insurance jargon term for you and me. And they know where the health plan funds come from - their own contributions and, perhaps, contributions from their employers, which could otherwise go into wages.

In advance I proposed four premises for the discussion:

1. Resources are finite.
   


2. There are more potentially valuable things that health care can offer than we can pay for.
   


3. Organizations like unions that provide health insurance will have to learn to work with questions like "how much is life worth?" in a thoughtful and constructive manner.
   


4. High cost pharmacy is a prime area where tough decisions will have to be made.

We'll use two drugs as examples that ultimately require us to acknowledge "how much is life worth?" as a real question. Provenge is a new immunotherapy for minimally symptomatic metastatic prostate cancer not responsive to hormone therapy. It extends median survival for 4.1 months at a cost of $93K. Cerezume is a biologically engineered form of the deficient enzyme in Gaucher's disease. It can produce significant improvements in quality of life for $150K - $250K per year.

In emotional terms, life is priceless. But in economic terms, it isn't.

I'll make the point that avoiding questions about the value of health interventions is a major reason we're in the mess we're in now. We won't solve the cost dilemma until we learn to think in terms of both numerator (my needs and desires) and denominator (the insured population's needs and desires). I'll make the further point that this kind of learning is more emotional than cognitive. And it takes time, so a long term strategy is necessary.

Union health plans, which are likely to have a high degree of solidarity among the insured population, are a promising venue for thinking this way. I hope we'll be able to probe health care costs as "our problem" rather than as something "they" are forcing on us.

I'll write more after I meet with the union leaders.

What Will Employees Accept to Lower Their Health Care Costs?

I recently looked at a Kaiser Family Foundation Public Opinion Survey that asked a random sample of people with employer insurance a number of questions about cost. The survey shows how far we have to go to come to grips with out-of-control health care costs.

The good news is that half have a reasonably accurate idea of the total cost of their health insurance. Their estimates were somewhat low, but in the ball park of reality.

The bad news is that the other half had no idea about a cost that was constraining their wages and cramping the employer they work for.

What dismayed me most were the responses to a list of possible changes to current insurance that would lower the cost of coverage. The only suggestion that received majority support (68%) was to "participate in a wellness program that promotes healthy behaviors such as losing weight or controlling your blood pressure or cholesterol." Only 30% were willing to accept paying more for brand name drugs, paying a higher deductible before the insurance kicks in, or accepting a more restricted list of participating doctors and hospitals.

So how are we going to keep health care costs from undermining public health more than is already happening?

Public education is important, but it won't do the heavy lifting. Despite lots of educational effort, something as obvious as constraining access to brand name drugs when alternatives are available still only gets 30% support.

Learning through experience is likelier to move our outlook. In the world of employer based insurance, employers and insurers should design multi-year approaches to helping us learn. We're starting to see employers offer "value-based" networks that emphasize primary care and community hospitals, with tertiary hospital care covered for services that aren't otherwise available. And as I've written about in previous posts, employers are putting more pressure on us to manage our health better (see here, here, and here).

In the current U.S. system, the majority of non-elderly with insurance get their health insurance through their employer. Employers and insurers should collaborate to make health insurance a "learning opportunity," not just a "fringe benefit." It takes us time to learn about financial responsibility in our growing up. It's going to take time and a similar concerted effort for us to learn health responsibility as adults!

Should Wal-Mart Make Smokers Pay More for Health Insurance?

A recent article about changes Wal-Mart is making in its health insurance program reports that smokers will be required to pay an extra $10 to $90 each pay period — $260 to $2,340 a year.

Is that fair?

Greg Rossiter, speaking for Wal-Mart, defends the policy on the basis of cost - “Tobacco users generally consume about 25 percent more health care services than nontobacco users.” But patients with cancer also "consume" more health care services. I doubt that Wal-Mart intends to raise their premiums.

Wal-Mart doesn't justify the tobacco penalty by cost alone, but rather by cost combined with the conviction that smoking represents a choice.

Smoking is obviously harmful, and smoking cessation will be good for the individuals who stop, the cost of the corporate health program, and the impact of secondary smoke on others. But Wal-Mart's program is wrong.

Nicotine is addictive. Addictions don't stop on a dime. Here's what I would have recommended to Wal-Mart:

1. "If you haven't done it already, involve a council of "associates" (the Wal-Mart term for employees) in developing the policy re smoking."


2. "Give associates advance notice of the financial penalties - no less than a year, perhaps two."


3. "Offer strong support for smoking cessation."


4. "Make sure the financial penalties aren't 'too large.' The aim of the penalty should be to focus attention on tobacco use and send an educational message, not to cover the incremental cost of health care. $2,390 is way too much for anyone but a senior executive."

A country with a tax-supported health system that covered all citizens would locate incentives where they belong - at the point of purchase, not as part of the health insurance premium. Tobacco, beverages with high sugar content, and other products that harm individual health, public health, and add to the deficit, would be taxed at a high enough level to create a disincentive and to account for the costs the products create for the public.

I'm entitled to smoke if I wish, but I'm not entitled to make you pay for the future costs my smoking entails.

Given our reliance on employer-based health insurance for 60% of the population, it's ideal for employers to take a public health orientation towards employees. I think Wal-Mart is right to take on smoking as a public health issue for its employees, but clinical and ethical considerations require it to modify the way it's approaching the issue.

The Good Samaritan didn't ask the wounded traveller if he'd brought on his condition by faulty choices!

Gilbert Welch's "Vision for Medicare"

The Health Care Blog just published an op ed by Dr. Gilbert Welch. It's well-written and on target. Have a look!

AARP's Misguided Medicare Advocacy

AARP has produced a strong television advertisement threatening any legislator who considers cuts to Medicare.

The ad shows an army of folks around my age marching and looking tough, while the narrator/leader intones:

"Washington, before you even think about cutting my Medicare benefits...here's a number you should remember - 50 million. We are 50 million seniors who earned our benefits, and you will be hearing from us, today, and on election day."

Here's what an ethically guided ad would say:

"Washington, before you even think about cutting Medicare benefits, think about fairness. We 50 million seniors want to do our part to ensure a healthy future for America. But we want to be part of a team, and that means everyone sharing the burden, including adding new revenues..."

I'm insured through my employer, but I'm Medicare eligible. When I'm insured through Medicare, please tell me to wash my mouth out with soap if I call it "my Medicare." It's not just "mine," it's "ours." My payments into the Medicare fund from 1965 on paid for the care of my elders, including my parents. When I'm a beneficiary, my care will be paid for by the younger generation. Medicare is a matter of communal responsibility, not the private property of the 65+ generation.

Age is supposed to be a source of wisdom. Calling for teamwork and shared sacrifice is what my generation should be advocating for. The AARP advertisement invites definition of the elderly as "greedy geezers." AARP is making itself part of problem, not the solution.

(For the Concord Coalition critique of the AARP advertisement, see here.)

The Customer Approach to Patienthood

An article about "The New Language of Medicine" in the October 13 issue of the New England Journal of Medicine makes a powerful argument against the use of economic concepts like "customer," "consumer," and "provider" for the caretaking relationship between clinicians and patients. I've never met a doctor or nurse who didn't share the authors' perspective:

The words “consumer” and “provider” are reductionist; they ignore the essential psychological, spiritual, and humanistic dimensions of the relationship — the aspects that traditionally made medicine a “calling,” in which altruism overshadowed personal gain...Business is geared toward the bottom line: making money. A customer or consumer is guided by “caveat emptor” — “let the buyer beware” — an adversarial injunction and hardly a sentiment that fosters the atmosphere of trust so central to the relationship between doctor or nurse and patient. Reducing medicine to economics makes a mockery of the bond between the healer and the sick...We believe doctors, nurses, and others engaged in care should eschew the use of such terms that demean patient and professional alike and dangerously neglect the essence of medicine.

But history is more complicated than "The New Language of Medicine" suggests, starting with the fact that "customer" language, when first introduced 36 years ago, was profoundly humanistic.

In 1975, Aaron Lazare, who was then director of the walk-in clinic at the Massachusetts General Hospital, wrote a brilliant article - "The Customer Approach to Patienthood." Lazare used the concept of "customer" to emphasize the clinical and ethical imperative for clinicians to pay close, respectful attention to their patients' requests. He and his colleagues were writing about mental health care, but their insights apply across the board in medicine:

Some professionals find the word "customer" crass. We believe it is a useful metaphor to describe a relationship in which the patient has the right to ask for what he wants, to negotiate, and to take his business elsewhere if he so desires, while the clinician has the obligation to listen, negotiate, and offer treatment that meets his professional standards. This "customer" relationship, we believe, is in the best interest of both parties.

Unfortunately, Lazare and his colleagues' superb work did not get the attention it deserved. In a recent poll, 78% of physicians said that most health care professionals provide compassionate care, but only 54% of patients said that they do.

Insofar as "customer" language construes health care as a commercial transaction governed by "caveat emptor" it's pernicious and should be fought against. But insofar as it reminds us that medical ethics and clinical excellence require top flight "customer service" as envisioned by Lazare, it should be embraced!

(For an earlier post on this topic, see here.)

Health Insurer Secrecy and Public Trust

Ten health insurers, including Aetna and United Healthcare, are suing the New York State Insurance Department to prevent publication of memos that present their rationales for rate increases. The companies argue that the memos reveal proprietary trade secrets and that making them public would cause “substantial and irreparable injury" in the competitive marketplace.

I've not seen the complaints the insurers have submitted to the court, but it's quite imaginable that the rate increase memos include company secrets that are protected by law. If this is the case, the companies may win the immediate battle. But they're sure to lose the long term war about transparency.

At the not-for-profit health plan where I direct the ethics program, rate increases reflect the cost of care delivered to members. There are no equity owners demanding dividends and improved stock prices. Approximately 90% of the health plan's revenues go out as claims payments. Among for-profit insurers the "medical loss ratio" (better thought of as the "medical care ratio," since the purpose of health insurance is to pay for medical care!) is lower - often less than 80%!

Patients and the public need to understand the drivers of health care costs. Without that knowledge we can't be part of the solution to the cost crisis. And, increasingly, consumers are demanding to know why health insurance premiums are so high compared to other countries whose health outcomes are as good or better. Transparency is inevitable, and that's a good thing.

But the kind of transparency about pricing being called for in New York and elsewhere isn't ordinarily part of the world of for-profit enterprises. Health care, however, is better thought of as a public good than as a commercial commodity. As patients, we want our doctors and hospitals to be mission-driven. Secrecy about costs isn't compatible with professionalism and public trust.

(For a New York Times article about the litigation, see here.)

Compassionate Care Requires Support from Health Organizations

An article about compassionate care in the September issue of Health Affairs identifies the core focus of this blog - health care organizational ethics - as a key determinant of whether or not patients receive compassionate care.

Beth Lown and Julie Rosen, the lead authors, are, respectively, medical director and executive director of the Schwartz Center for Compassionate Care, whose mission is "to promote compassionate healthcare so that patients and their professional caregivers relate to one another in a way that provides hope to the patient, support to caregivers and sustenance to the healing process."

The article reports on a telephone survey of 800 recently hospitalized patients and 500 physicians. Interviewees were read the following description of compassionate care before being questioned further:

“Now, I would like to turn to an approach to treating patients known as compassionate health care that focuses on improving the relationships between doctors, nurses and other professional caregivers and patients and their families. Its particular focus is to improve the communication and emotional support that patients receive from their doctors, nurses and other professional caregivers.”

Patients and physicians agreed on the importance of compassionate care, but differed in their assessment of how reliably it is provided: 78% of physicians said that most health care professionals provide compassionate care, but only 54% of patients said that they do.

More than half (53%) of the physicians reported spending less time than they wanted with their patients, and 55% of physicians and 67% of patients were worried about how changes in the health system, very much including emphasis on cost containment, would affect clinician-patient communication in the future.

The authors concluded that to achieve compassionate care, providers need (1) time to listen to patients; (2) education in the relevant skills, (3) feedback based on measures of their performance, and (4) leaders and systems that support their healing relationships with patients and families.

Health plans, hospitals, group practices, and other health organizations can't solve the time problem by printing money, but they can devote savings from efficiencies to enhancing the potential for compassionate care. Time with patients is indeed a key factor. Psychiatrists are often asked to do "medication management" in 15 minute blocks. I found that this could work for me with patients who (a) I knew well when (b) what we needed to accomplish was relatively simple and (c) I had flexibility to make more time available when we needed it. But by making my modal appointment 30 minutes rather than the 50 or 60 that was routine, I was able to meet "productivity" expectations and have more appointments available so that I could see patients sooner in followup or on short notice when urgent issues emerged. The system I worked in facilitated my doing this.

My colleagues across specialties in the group I practiced with would periodically share our clinical "pearls" for how to provide compassionate care in circumstances of time pressure. I learned important lessons not just from psychiatrists, but also from a pediatrician colleague who saw the largest number of patients and received the highest evaluation from patients for compassionate care.

Leaders are most effective in supporting compassionate care by improving tools and providing relevant education, not by preaching. The two leadership interventions I found most helpful were (1) providing individual voice mail before this was standard and (2) systematically surveying patients about their experience with their clinicians. The surveys taught me how much my patients valued being able to get a message to me 24/7 and receiving a prompt return call.

Most clinicians want to provide compassionate care. The concept doesn't require selling - it's intuitively obvious that compassionate care is the right thing to do. The challenge is getting beyond lip service. Health organizations play a crucial role in moving from endorsing the importance of compassionate care to providing it in a reliable manner!

Going to heaven with our stitches in

A team at the Harvard School of Public Health published a disturbing article in Lancet this week on "The intensity and variation of surgical care at the end of life."

The group studied the 1.8 million Medicare beneficiaries who died in 2008 to determine the frequency of surgery during the last year of life. 32% had an inpatient surgical procedure during their last year. 18% had surgery during their last month. And 8% had surgery during their last week.

This is a population study, so it doesn't tell us how often the surgery was required by the patients' true needs and wishes. But I'd bet dollars to pennies that most readers of this post have seen surgery done in situations where a better informed patient and family would have rejected the proposal.

My beloved late father-in-law was vigorous until he turned 90, at which time angina limited how far he could walk in New York City's Central Park. Early in his life he'd been in the plumbing supply business, so when a revascularization procedure was proposed to him he thought of it as a common sense plumbing repair. He didn't consult with his family before deciding to do it. The result was five months of intractable heart failure before his death.

He was a gentle, fair-minded man and forgave his physicians for a recommendation they shouldn't have made and he shouldn't have accepted: "They are young men and were thinking about young hearts, not my 90 year old heart."

Dr. Ashish Jha, leader of the Medicare study, told a similar story from experience at his own hospital:

A man had metastatic pancreatic cancer and was dying. A month earlier, he had been working and looked fine.

“No one had talked to him about how close he was to death,” Dr. Jha said. “It’s the worst kind of conversation to have.”

Instead, doctors did an endoscopy and a colonoscopy because the man had internal bleeding. Then they did abdominal surgery. “We did all of this because we were trying desperately to find something we could fix,” Dr. Jha said.

The man died of a complication from the surgery.

“The tragedy is what we should have done for him but didn’t,” Dr. Jha said. “We should have given him time to have the conversation he wanted to have with his family. You can’t do that when you are in pain from surgery, groggy from anesthesia. We should have controlled his pain. We should have controlled his nausea.”

Instead, Dr. Jha said, “we sent him to the O.R.”

Our current public concern is with Medicare costs. But the primary problem for my father-in-law and the patient Dr. Jha describes is care, not cost. More appropriate care for the patient would have had the secondary benefit of reducing cost. That's better medicine,not "death panel rationing"!

(A previous post - "Is Death Optional?" - discusses our need for a national dialogue on the goals of our health care system.)

Health Care Cost Insanity Continues

The invaluable Kaiser Family Foundation released its 2011 Employer Health Benefits report yesterday. The findings are ugly.

150 million Americans get their coverage through employer-based programs. Last year, apart from the tragedy of increased unemployment, wages increased by 2% but premiums went up by 9%. The average cost for family coverage was $15,073.

From the perspective of workers, health care costs strangle wages and job creation. From a U.S. perspective, health care costs strangle other investments that could create more human value. And from a global perspective, it's disgraceful that we spend so much on health care without commensurate benefits while people in poor countries die from readily preventable causes.

A quote in a New York Times article about the report partly explains the mess we're in:

“We’re at a watershed moment,” said Elisabeth Benjamin, who represents Health Care for All New York, a group of 100 organizations advocating affordable care. “The Cuomo administration has to decide, will the Department of Insurance stand up for the little guy, John Q. Public, or let the insurance companies get away with this nonsense?”

John Q. Public is indeed getting shafted, but pointing at insurance company "nonsense" won't get us anywhere. Insurers will blame providers for raising prices. Providers will blame (a) their own costs, (b) Medicare and Medicaid payments, and (c) demand from the John Q. Public, whose advocates blame the insurers.

This circle of unproductive blame allows the inexorable cost escalation process to continue. Each stone the blamers cast has truth in it. But the stone casters are reluctant to acknowledge their own sins. We'll only get a grasp on our pattern of cancerous cost escalation through coordinated action among the currently warring stakeholders. That ultimately requires political leadership. We're not likely to get that leadership until we have an overall budget for health care, whether through a single payer system or through a system of not for profit health insurers as envisioned by Zeke Emanuel in Healthcare, Guaranteed.

In our current political discourse, the R word ("rationing") paralyses serious consideration of establishing an overall health budget. Budgets create limits, and limits lead to the accusation of rationing.

Some years ago, as part of a panel on rationing, a member of the audience challenged me by asking "Are you going to market your health plan by saying 'we ration care better than anyone else'?" For a moment I was nonplussed, but then I channeled Karl Rove and responded - "I would say 'we produce more health for every penny you invest than anyone else.'"

If a political clod like me could develop a communication strategy for detoxifying talk about health care costs and rationing, the political pros could show us the way if they put their minds to it!

The Dignity of Risk

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

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

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

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

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

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

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

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

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

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

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

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

The Ethics of Palliative Psychotherapy

Michael Kahn, a psychiatrist at the Beth Israel Deaconess Medical Center in Boston, has an excellent short article on "Palliative Psychotherapy" in the September American Journal of Psychiatry.

Here's how the article starts:

After hearing my doubts about whether I had done anything to help a middle-aged, talented, but characterologically difficult patient lead even a marginally better life, a trusted colleague said, "I think you made his existence a little less lonely and painful."

The conversation with his colleague led Dr. Kahn to these reflections:

...my treatment could be thought of as palliative psychotherapy. After all, I had provided comfort, if not cure. I had avoided inflicting harm. I had provided some humor and perspective for a life chronically lacking in both. I had helped a habitually poor problem solver to solve many basic problems. I had even met with several of his family members. What if fundamentally altering his many decades' worth of maladaptive coping was beyond my skills, and perhaps anyone's?

Dr. Kahn is on to something important!

Palliative care - which focuses on improving quality of life for people with serious ailments - is increasingly recognized in circumstances like heart failure, cancer, and other chronic conditions. But it's a newer concept for psychiatry.

Dr. Kahn identifies the major objection to applying the concept of palliation to his patient's treatment - "it [may] represent a fancy way of defining expectations downward and rationalizing failure."

This definitely happens, often in the form of blaming the patient for resistance to making changes rather than blaming ourselves for conducting an ineffective treatment.

I learned a valuable lesson about palliative care early in my practice. I was seeing a man in late middle age who had suffered from a major psychiatric ailment for all of his adult life. His wife often joined the meetings. I cast about for ways of making things better, but was feeling guilty for not being helpful.

At that point I wrote for tickets to a cultural event. (This was in the pre web era.) The tickets came with this letter:

Dear Dr. Sabin

This event was sold out. But when I saw who the request was from I managed to find two tickets. You've been such a wonderful doctor for my parents that I wanted to say "thank you."

Without knowing it I was doing palliative psychotherapy, but I was asking myself to bring about a definitive "cure." My patient and his wife knew that this, alas, was not in the cards. They responded to the fact that I liked and respected them, and took the issue of their happiness in life seriously.

In my eyes I was a flop. In their adult child's eyes I was doing a great job.

As Dr. Kahn points out, making a differential diagnosis between which aspects of our psyches are susceptible to change and which appear to be "hard wired" is difficult. An error in either direction can be harmful. Unwarranted pessimism can deprive our patients of potential improvement. But unwarranted optimism about the capacity for change can also cause harm.

I learned this lesson vividly with another patient. We began the treatment with great optimism about "cure." It took us both several years to recognize that what had looked like a problem of adolescent development actually represented a very serious psychiatric condition. My effort to "cure" the condition via psychoanalytic psychotherapy actually made things worse. When this finally became clear I said - "I won't be your therapist any more, but I'm happy to counsel you on how to manage your ailment. If you had diabetes we wouldn't expect psychoanalytic psychotherapy to make it go away, and the same applies to the condition we're dealing with." I haven't seen this patient for years, but we still exchange letters in which I offer coaching and support.

Given the need to constrain health care costs, how should insurance deal with palliative psychotherapy? In my view, the health system gets this question wrong in both directions.

Often insurance coverage for mental health services requires an expectation of substantial improvement within a limited time period. As a criterion, that's too rigid.

Here, for example, are excerpts from the CIGNA guidelines for outpatient therapy:

The treatment plan should include clearly defined, realistic, and achievable goals and discharge criteria, with specific timelines for expected completion.

Treatment is primarily supportive in nature.

For patients like the person Dr. Kahn describes, it would be easy for the insurer to conclude that the treatment is "primarily supportive" and lacks "achievable goals" with "specific timelines."

But as occurs so hilariously in Woody Allen films, it's possible for therapy to degenerate into an unending process that is sometimes disparaged as "rent-a-friend." This form of pseudo therapy should not be paid for by insurance funds.

In my experience, monitoring the value of therapy is best done by a collegial group that cares for a population within a budget. Rather than depending on a third party to judge the value of the therapeutic process via telephone review, clinicians manage themselves within the limits set by a budget. This is the framework Kevin Grumbach and Tom Bodenheimer argued for in their brilliant 1990 article "Reins or Fences: A Physician's View of Cost Containment."

I experienced what Grumbach and Bodenheimer described in my years of practice with the not for profit Harvard Community Health Plan HMO. We had a population of patients to care for and a budget that came from the premiums we received for them. In the mental health department we set expectations for how many new patients we would take on, but were free to manage our own practices. With patients whose needs were palliative we would seek the most efficient ways of meeting their needs, as by using groups and referral to community supports.

Between (a) the "fence" created by an overall budget, (b) ethical commitment to our patients' welfare, and (c) the freedom to innovate created by a payment system not based on counting widgets, (d) palliation could be part of what we offered without breaking the bank.

These are the values the much beleaguered health reform law is trying to advance. Too bad it's in the cross hairs of a political system currently run amok!

Altruism in Japan - Seniors Volunteer for Nuclear Cleanup

My friend and colleague Steve Moffic, who, like me, thinks of health care in the light of ethics and the religious impulse, told me about a remarkable movement among the elderly in Japan.

500 retirees have created the "Skilled Veterans Corps for Fukushima" and volunteered their services for work that doesn't require youthful muscles at the devastated Fukushima nuclear plant. Radiation levels make the work dangerous.

Here's how Kazuko Sasaki, a 72-year-old grandmother, explains her thinking: "My generation built these nuclear plants. So we have to take responsibility for them. We can't dump this on the next generation."

Yasuteru Yamada, also 72, initiated the project, because it "would be better to send men and women who have finished raising families and are in the sunset of their lives, rather than younger workers whose lives could be cut short by extreme radiation exposure." And Yamada, a third 72 year old, reported "I want to make the most of the time I have left."

Although Japanese culture is known for stronger communitarian values than we in the US live by, over the years my elderly patients often expressed sentiments that come from the same psychological and spiritual space. But contemporary medical ethics typically asks us to be suspicious of the altruistic stance. When our elderly patients say "I don't want to be a burden to my family" or "pay attention to the youngsters - I've lived my life," we interpret these sentiments as signs of depression and low self esteem. Sometimes that's what it is, but sometimes it represents the moral perspective that Yasuteru Yamada presented in his matter of fact way.

I'm working on ways to tap the altruism that is part of the aging process for many seniors. Working on behalf of making Medicare more efficient so that the next generation has a better shot at a good life isn't as dramatic as volunteering to work at Fukushima. But many seniors, myself included, agree with Kazuko Sasaki that our generation made the mess we're in and we can't in good conscience dump it on the next generation.

(See here for the NPR story about the Fukushima volunteers.)

Obama on Medicare - Good Clinical Ethics/Poor Partisan Politics

I was torn by Robert Pear's report in today's New York Times that Democrats are distressed about President Obama's proposal for a $300 - $500 billion reduction in Medicare and Medicaid spending over the next ten years.

I hate to see anything that will help mad dog Republicans. But clinical ethics support President Obama's stance.

Representative Emanuel Cleaver II, Democrat of Missouri and chairman of the Congressional Black Caucus, explained Democrat fears - offering such proposals “cancels out any bludgeoning that Democrats might give the Republicans over Medicare and Medicaid.”

"They [fill in the blank with your favorite opponent] will destroy Medicare" is a superb political bludgeon. It worked for Republicans in 2010 and for Democrats in 2011. For winning elections, stonewalling on Medicare cuts is the best policy.

But apart from the obvious need to constrain Medicare costs for the sake of a healthier federal budget, the right kind of cost constraints will be good for the health of Medicare beneficiaries!

Increasing the retirement age is exactly the wrong kind of "cut." It would transfer costs to others and harm all of those who became uninsured when they lost employer insurance before they became Medicare eligible. Increasing premiums, cost sharing, or both, especially for lower income beneficiaries, is almost as bad - it would lead to avoidance of needed treatment and worse health.

The sweet spot for Medicare cost containment is in overtreatment and defensive medicine. Anyone close to health care provision, whether as a clinician, administrator, or family member, knows just how common it is for beneficiaries to receive unneeded diagnostic, therapeutic, and even preventive, interventions. Apart from wasting beneficiary and taxpayer money, unneeded interventions cause all kinds of harm, through their own side effects or harms caused by other interventions done in follow up.

Economists say that malpractice reform can't be looked to for significant savings, but I don't think they understand just how toxic fear of litigation is for physicians. In addition to leading to defensive medicine practices like unneeded MRIs, concern about litigation synergizes with our cultural tilt towards the false belief that more is always better. It's time for Democrats to get on board with tort reform.

Twenty five years ago, my friends David Himmelstein and Steffie Woolhandler wrote about US administrative practices as "Cost without Benefit." I'm convinced that within the sphere of clinical care we have more than 5% of cost-without-benefit-and-often-with-harm. Reducing that segment of Medicare costs is the right thing to do - for beneficiaries as well as for the budget!

The fact that good clinical ethics could be bad politics is a symptom of pathology in our political process.

Grady Hospital Dialysis Patients Have a Home - For Now

Last week I wrote about the ping pong match being played between Grady Hospital and Fresenius. Unfortunately, the ping pong balls were patients with advanced kidney failure.

Grady's contract with Fresenius for the remaining patients who had been under the care of Grady's dialysis program when it closed in 2009 had ended on August 31. Grady said it could not pay the price being asked for by Fresenius. Fresenius refused to care for patients without being paid.

Fresenius said these were Grady's patients and Grady's responsibility. Grady said Fresenius had been treating them for two years and they were Fresenius's responsibility.

On Friday September 9, Grady and Fresenius reached an agreement. Fresenius will care for the patients at no cost to the patients for three years. Grady will pay $15,500 per year, approximately half of what they had been paying.

If this were an ordinary business or labor management negotiation, it would be ho-hum ordinary. It's typical to go to the brink, to point accusatory fingers, and then to settle.

But between the expiration of the contract on August 31 and the deal reached on September 9, patients had to go to the emergency room to be evaluated for emergency dialysis. Some were turned away as "not sick enough." One patient who was turned away on Saturday and then admitted briefly on Sunday returned to Honduras just before the deal was signed. Her family scraped together enough money to pay for two weeks of dialysis at home, but her fate after that, her sister said, is "in God's hands."

The deal between Grady and Fresenius settles the crisis by providing dialysis care for three years - except for the patient in Honduras, who may be on her own in two weeks. The deal is a small victory for people in need.

But given that the Grady problem will continue to occur for undocumented patients all around the country unless we craft a national solution, it's also a form of "enabling." The crisis is off the front page and the evening news, so we can go about our business until the next crisis occurs.

(For Kevin Sack's New York Times report on the Grady-Fresenius deal, see here. For an excellent policy brief from the American College of Physicians that argues in detail for the "federalization" of local problems like Atlanta that I've been advocating for, see here.)

Stanford Medical Records Posted Online

The New York Times reported today that a spreadsheet with the names, diagnosis codes, admission and discharge dates, and billing charges for 20,000 patients seen at the Stanford emergency room during a six-month period in 2009 had been posted online for almost a year before it was detected!

The spread sheet had been posted on September 9, 2010, to a website called Student of Fortune a site where students can buy help with their homework. (More about it below.) It stayed posted until August 22, 2011, when a patient discovered it and reported the breach to Stanford.

The spreadsheet came from Multi-Specialty Collection Services, a vendor to Stanford, hired to do payment and billing analysis. It was posted as part of a response to a student asking about how to convert data to bar graph form. The identity and motives of the person who posted the spread sheet is unknown.

A spokesman for Stanford correctly stated that "there is no employee from Stanford Hospital who has done anything impermissible." This is true. But that's the problem!

As health care becomes more complex and more digital, information can easily be moved around. Hospitals, medical groups, health plans, and others, use vendors with specialized skills. Sophisticated analysis of population data is crucial for improving quality and constraining costs. But it creates vulnerability to data breaches, as happened at Stanford.

The article mentions other prominent institutions that have experienced major breaches. Apart from hacking incidents and erroneously addressed faxes and emails, an employee at the Lucile Packard Children's hospital stole a computer with the records of 532 patients. And an employee of the Massachusetts General Hospital left paper records on the subway while commuting to work.

Bryan Cline, a spokesperson for the Health Information Trust Alliance, a nonprofit devoted to "the belief that information security should be a core pillar of, rather than an obstacle to, the broad adoption of health information systems and exchanges," said that 20 percent of breaches involve contractors. Cline noted that providers depend on legal contracts with vendors to protect privacy, but as the Stanford case shows, contracts aren't guarantees!

The more interconnected we are, the more our own integrity depends on the integrity of those we're connected to. I practiced for more than 30 years with a large medical group. When patients described bad behavior of clinical colleagues, administrators, or support staff, I apologized. Typically my patients said "you didn't have anything to do with it." I replied with some version of "but we served you poorly, and I'm very sorry about that."

Interconnection creates great opportunities and great risks. Lapses of the kind that occurred at Stanford undermine public trust and could lead to crippling restrictions on the use of digital data. This would be a public health tragedy.

To my reading, Student of Fortune, the homework-help website where the spreadsheet was posted, smacks of the corruption of the educational process. Educators report a vast increase in plagiarism and other forms of pseudo-student work and pseudo-learning. Here's how the enterprise describes how its "tutors," which includes the person who posted the spreadsheet, are paid:

1.Users post questions to our site, seeking help with an academic or technical subject. They offer a bounty for what they're willing to pay for a tutorial that teaches them how to solve their problem.

2.You find their question by searching or browsing for questions, or by opting-in to email alerts in your areas of expertise.

3.Write up a great tutorial for their question on Student of Fortune along with how much you'd like to get paid for it. We'll pick a random 20% of your tutorial as a preview and post it for everyone to see. Don't worry... you'll a say in what 20% we're sending, and we never send the end of your tutorial (where we expect you'll put the conclusion).

4.When the other user buys your solution, we'll send you the tutorial (less 18% to cover the bare-minimum cost of processing your transaction).

5.We keep your tutorial around forever, so if it's a commonly-asked question, you could be making money off it for a long time to come! Some of our users have made over $1,000 off of a single tutorial! In these cases, we'll take 40% to help cover the cost of advertising your tutorial.

When I search online under "organizational ethics," in addition to links to this blog I find many advertisements for essays business students taking courses on the topic can purchase.

How's that for an ethics lesson to our budding organizational leaders!