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?