Monday, September 29, 2008

The Demise of a Journal: "Organizational Ethics" Publishes its Last Issue

A note came with the most recent issue of "Organizational Ethics" announcing that publication was ending. The explanation was - "Support for the journal has been strong from a small audience, but in the past four years of publication this audience has not grown."

I've subscribed to and appreciated the journal since its inception. I wrote the equivalent of a condolence letter to the managing editor. She explained that because Organizational Ethics did not accept advertising or sell the names of its subscribers, it was completely dependent on its readership for support. It could have been self-sustaining with just 100 subscribers, but wasn't able to sustain that level of support, despite efforts to publicize the journal at conferences and meetings and through advertising programs.

I was shocked at this news - not being able to maintain 100 subscribers in the English speaking world. It's a wake up call to all of us who see organizations (and health systems) as central influences on the ethical quality of health care.

At present this blog, despite its wonky url, has close to 2,000 unique visitors each month, and the number has gradually been growing. The journal may have suffered from the global move away from subscription journals to the web.

To the journal "Organizational Ethics," we can only say R.I.P and thank all those associated with it for their efforts. But the field isn't going away, and will only become more important with time.

Sunday, September 28, 2008

Business Ethics and Comparative Effectiveness in Health Care

Although no one designing a health system from scratch would create the hodge podge of employer-based insurance and thousands of insurance companies we have in the U.S., that's what we've got.

Two weeks ago, in a posting about the Hanniford supermarket chain, I expressed the hope that self-insured employers would become crucial learning laboratories about resource allocation and comparative effectiveness for the U.S. health system. This week news from two large Wyoming coal mines convinces me that this hope isn't a pipe dream.

Foundation Coal and Peabody Energy have been shopping for specialty care for their employees, making use of comparative effectiveness information. Here's a story from Foundation:
"Ken Ferguson, 54, maintains the bulldozers and heavy trucks that haul coal at the Belle Ayr mine near Gillette, Wyoming. In return, his employer, Foundation Coal Holdings Inc., provides his family with the best medical care it can buy.

Ferguson's wife, Shanna, had her colon removed last year because of chronic inflammatory disease. Foundation sent her 700 miles away to the top-ranked Mayo Clinic in Rochester, Minnesota. The company covered the $85,000 bill for the operation and follow-up reconstructive surgery and even paid for Ken's motel.

`I was at the best place with the best doctors possible,' said Shanna, 50. `And we saved money.'

So did Foundation...`Would we have saved money if Shanna did the operation locally? Maybe,' said David Crowder, a retired surgeon hired by Foundation and Peabody to cut health costs. `But would the operation have gone as well? Unlikely. It's costs down the road you have to look at.' "
Crowder used HealthGrades, a Colorado-based company that provides information on hospital quality and cost, to advise Foundation and Peabody.

What strikes me is the synergy between individual and company interests here. Ken and Shanna are happy with the care Shanna got, and the fact that (a) they saved money, and (b) Ken's employer did too. The mining company is a microcosm of wider society. Individuals want to be as healthy as possible, and society wants its members to thrive and not to go broke supporting this aim.

When health plans tried to manage care in the 1990s they were shot down for intruding on patient choice and physician autonomy. The fact that the best health plans were doing this on behalf of individuals and employers, and that better quality at lower cost served all stakeholders got overlooked in the frenzy of criticism.

For the U.S. to get a grip on its over-costing under-performing health system we need to accomplish two things. First, we need to think of our health system in terms of both numerator (individual needs and wishes) and denominator (population needs and wishes). Second, in seeking the best balance of individual and population interests, we need to use information on comparative effectiveness - both quality and cost.

We're nowhere near doing that yet in private insurance or our large public programs. But self-insured companies are moving in that direction. Each company is small, but the lessons we can learn from Hanniford, Foundation and Peabody are large. And lessons coming from the business sector, rather than the ivory tower of arcane health policy, will be listened to.

Tuesday, September 23, 2008

Henry Paulson and Health System Trust

The national debate about Secretary Paulson's bailout proposal offers some lessons for the health system. Here are three that jump out for me:

1. Trust in our institutions is supremely important. Economists tell us that the market is crashing not because of an intrinsically fatal illness but because investors have lost trust.

2. Whatever the merits of Secretary Paulson's $700 billion bailout proposal might be, the widespread loss of trust in the administration he is part of undermines the persuasiveness of the policy he recommends. As one of many examples, from today's New York Times:
"[Senator] Durbin, in a speech on the Senate floor, angrily recalled that the administration had similarly requested swift approval of its plan to attack Iraq. 'Just as we should have asked more questions about weapons of mass destruction six years ago before we found ourselves in this war,' Mr. Durbin said, 'we need to ask questions today about where this is leading.'"
We know that treatments are better adhered to when patients trust their physicians, and that trust adds to a medication's therapeutic impact. In psychiatry there is an old concept of "institutional transference" - when patients trust the institution where they receive their treatment, everything goes better.

Those of us in health care who work with organizations - and that's most of us now - are enhanced (and made more effective) or diminished (and made less effective) by the conduct of our colleagues and our organizations. I believe that Secretary Paulson is acting in good faith, but he is significantly less effective and persuasive than he might be because of the disgraceful behavior of the administration he is part of in the run-up to the Iraq war.

3. The reaction to Secretary Paulson's proposal tells us something about executive compensation. Even if the argument that the stratospheric compensation investment bankers receive (a) is needed to attract the best brains and (b) produces more value for investors and society, (c) that argument cannot be extended to health care. Those who make use of health institutions - hospitals, insurance, and even individual medical practices - experience those institutions as tainted by greed when they learn of the enormous bonuses executives receive. We want to see health care as a calling, not a cash cow. The economic argument about how markets set compensation fails to recognize the degree to which our institutions are more than market entities - they are organizations that must embody, in their own way, the virtues of a calling.

Friday, September 19, 2008

Genomics, Google, and Medical Ethics

The topic for the next meeting of the Harvard Pilgrim Health Care (a not for profit health insurer in Massachusetts, New Hampshire and Maine) Ethics Advisory Group, which I chair, is "Anticipating the Ethical Challenge of Genomic Medicine." I've been reading and thinking about what genomic medicine will mean for health plans for the past few weeks.

Yesterday, Sergey Brin, co-founder of Google, wrote in his blog about finding that he has a genetic mutation that increases the likelihood that he will develop Parkinson's Disease. I've quoted his wonderfully lucid posting below (in italics), followed by observations about some of the ethics and policy implications of his comments:
"For more than 20 years, my mother has worked with computers at NASA. So, when she developed a pain in her hands the diagnosis seemed easy -- Repetitive Stress Injury. Except that it wasn't so easy. As her mysterious symptoms progressed it varied -- RSI, fibromyalgia (unexplained pain), Lyme Disease, and so forth. It was only after visits to many specialists over a number of years that the diagnosis settled -- Parkinson's Disease. Since there is no clear test for Parkinson's -- it is defined by its symptoms -- we only grew certain as those symptoms developed and as her medications began to alleviate them."
What Mr. Brin's mother experienced is common in medicine - significant symptoms with no clear cause. As often happens, she saw many specialists and many different diagnoses were made. Happily, it does not appear that she went through a period of being "blamed" for her symptoms, as by "imagining" them or being "too sensitive to normal pain."
My mother had always been haunted by Parkinson's because her aunt had suffered from it. I had often reasoned with her that since Parkinson's is not hereditary (there is not a strong correlation of Parkinson's incidence among close relatives), she had little to fear.
Many people, perhaps most of us, are "haunted" by images of our future derived from experiences in our families. Mr. Brin's responses to his mother were based on the best information available at the time. But as emerges below, new facts emerged.
"In 2004, my wife, Anne, introduced me to her future cofounders in 23andMe as they were studying the genetics of Parkinson's Disease. As with my mother's fear, I was skeptical about the study. I reasoned that if there was much to be learned about Parkinson's in the genome, there would have to be a high percentage of inherited cases. In fact, I appeared to be right in that this particular study did not bear immediate fruit."
23andMe is a harbinger of the future - one of the new "personal genetics" enterprises that will provide genomic analysis directly to individuals who submit biological samples, typically saliva (23andMe sends a "spit kit"). How these services will be used and how individuals will react to and use the results are questions we won't know about until more experience accumulates.
"Nonetheless, there are some cases of familial Parkinson's but they are quite rare. Over the past few years researchers have been honing in on the genes that are responsible for those cases. One gene that stands out in those studies is LRRK2. There is one particular mutation of the LRRK2 gene -- known as G2019S -- that, while rare even among people with the disease, accounts, in some ethnic groups, for a substantial proportion of familial Parkinson's.

As a customer of 23andMe, I have always been excited about the product. I have found what pieces of DNA I share with various relatives. I checked whether other Brins were related. I explored my various gene journals -- learning, for instance, that I have one copy of the fast twitch muscle fiber. I also looked over the health related entries and found that my genetic risk for most diseases is modestly lower than average but for a few diseases it is modestly higher.

Because there are only a small number of genes which are known to have a very substantial effect on health (e.g. 10 times the average risk), I felt the possibility of discovering something very important to my health was just a hypothetical exercise. So, when my wife asked me to look up G2019S in my raw data (23andMe scientists had had the forethought to include it on their chip), I viewed it mostly as entertainment.

But, of course, I learned something very important to me -- I carry the G2019S mutation and when my mother checked her account, she saw she carries it too.

The exact implications of this are not entirely clear. Early studies tend to have small samples with various selection biases. Nonetheless it is clear that I have a markedly higher chance of developing Parkinson's in my lifetime than the average person. In fact, it is somewhere between 20% to 80% depending on the study and how you measure."
As a customer of 23andMe, Mr. Brin, not surprisingly, is stunningly well informed and logical in his thinking. If all users of the new, entrepreneurial genomic services were as sophisticated as Mr. Brin, concerns like those expressed in a January New England Journal of Medicine article - "Letting the Genome Out of the Bottle - Will We Get Our Wish?" would vanish.
"This leaves me in a rather unique position. I know early in my life something I am substantially predisposed to. I now have the opportunity to adjust my life to reduce those odds (e.g. there is evidence that exercise may be protective against Parkinson's). I also have the opportunity to perform and support research into this disease long before it may affect me. And, regardless of my own health it can help my family members as well as others.

I feel fortunate to be in this position. Until the fountain of youth is discovered, all of us will have some conditions in our old age only we don't know what they will be. I have a better guess than almost anyone else for what ills may be mine -- and I have decades to prepare for it."
Mr. Brin is an ideal user of genomic services. He interprets the findings as well as could be hoped for. He has deep intellectual curiosity. He responded to the bad news about the G2019S mutation in a profoundly constructive manner: (1) He considers what he can do to reduce the risk; (2) His wealth allows him to support research, which might benefit him directly, but will also contribute to the public good; (3) He puts the news into perspective - there is no fountain of youth and we will all encounter significant health problems in our lives; and, (4) He shows emotional resilience, and uses the news as an opportunity to "prepare" rather than despair.

There are, however, less happy scenarios that can be imagined. Here are two. (1) From my experience as a psychiatrist it is not hard to picture someone less resilient than Mr. Brin, perhaps subject to depression, who would take this kind of news as a death sentence, and perhaps even become suicidal. (2) In light of how costly health insurance is, it is not hard to picture people testing their genomic pattern with the idea of going without insurance in the absence of major risks and becoming heavily insured if the predicted risks are great. For individuals this is rational behavior, but in the fragmented U.S. health system this information asymmetry could ultimately undermine the insurance process. (Interestingly, the increasing availability of genomic information might give a push to the single payer option. Only if everyone is in the system is there is no advantage to using genomic information to game it!)

Wednesday, September 17, 2008

Should Health Insurance Cover Services for Autism - an Ethical Analysis

A whole course in health system ethics could be built around the issues raised by an article in yesterday's Boston Globe about insurance coverage for autism services. I've taken four slightly altered snippets from the article and followed them with comments (in italics):
1. "The nation's largest autism advocacy group, Autism Speaks, is planning a legislative push in 20 states, including Massachusetts, to require private insurance companies to pay a portion of the intensive, expensive educational treatments that many medical professionals say are a child's best chance to overcome, or just learn to cope with, profound and lifelong developmental and learning disabilities."
In a democratic society advocacy groups like Autism Speaks play the crucial role of organizing and amplifying individual interests into a voice that can be heard in the political arena. The fact that the services being requested are expensive will cause headaches for program managers, but autism is a serious impairment, and advocates can make a legitimate claim that a just society will not make access to services contingent on the wealth of the individual family. But it isn't yet clear whether society's obligation belongs in the health sector.
2. "'If my son couldn't hear and needed a cochlear implant, we wouldn't be asking the school system to take responsibility,' said Jack's mother, Judith, coordinator of the New England lobbying effort for Autism Speaks. 'As a society, we have to acknowledge that autism crosses a line from an educational issue to a medical one. Jack was diagnosed by a neurologist, not a schoolteacher.' [Another parent added] 'we are talking about medical treatments prescribed by medical doctors, and covering them like any other medical treatments.'"
This argument is rhetorically powerful, but flawed. The fact that a physician makes the diagnosis doesn't tell us what social sector should be responsible for responding to the need. A physician may correctly diagnose arthritis and prescribe exercise in a warm swimming pool. The exercise may help tremendously, but that doesn't mean that health insurance must provide the pool or pay for access.
3. "But private insurers are balking at the proposed requirement, especially coverage of applied behavior analysis programs, which involve a weekly regimen of more than 30 hours of intense, often one-to-one, positive reinforcement techniques for teaching children how to speak, play, learn, and function in the world. They say applied behavior analysis programs are relatively new and unproven, and not effective for all children. ABA teachers are not licensed in many states, and insurers contend that the therapy system is still too new to be regulated sufficiently...But parents of autistic children are determined to get their youngsters into programs that offer even a glimmer of hope."
If I had an autistic child I too would want any service that offered a glimmer of hope. But societies must set standards for how strong the evidence for that glimmer is. The judgment requires empirical analysis - what do we know about the effectiveness of the intervention? But the judgment also involves value judgments - how strong must the evidence be? how much benefit must the intervention offer?

But if what the article cites is all insurers are saying, it is just a matter of time until some form of behavioral education comes under health insurance, since there will almost certainly be techniques that will be shown to provide benefit. I want to see children with autism have access to effective rehabilitative services, but I'm not at all convinced that the service belong in the health sector, as opposed to the education sector.
4. "Requiring insurers to pay for educating autistic children would 'drive up costs for everyone, said Dr. Marylou Buyse, president of the Massachusetts Association of Health Plans...Paul Andrews, director of government services for the Massachusetts Association of School Superintendents [said] 'Special-needs costs have escalated so high that it has reduced the amount of funding we can spend on regular education.'"
These comments show something fundamental about the health sector. There is no budget! If we add autism services, costs go up. But unlike health, the school system has a budget. If we add autism services, something has to come out. Some people argue that health is "priceless" and costs should not be considered. But that view is misguided ethics and faulty facts. Health is tremendously valuable. But it's not the only value. And we know that for every 1% increase in health care costs (the impact advocates say providing autism services would have) 150,000 people lose their health insurance. Legislators who vote to mandate new coverage that will "only" increase costs by 1% should recognize that while they are providing benefit for one group through the mandate, they are harming another group, who will be pushed out of the insurance system.

Autism advocates are smart to push for coverage under health insurance, since unlike education, the health sector currently has no explicit budget, so the cost of adding new expenditures is hidden, as in the form of an ever increasing population without insurance. At some point we will have to wise up and set budget limits for health care, the way we do for every other sector of society. At that point advocates, whether for autism or a new cancer treatment, will have to argue that their services are of such value that they should take funds away from other services. Arguments of this kind are volatile and painful, but we will have to have them.

My guess is that behavioral treatments will ultimately be shown to produce significant improvements for children with autism. I certainly hope so. In terms of managing our societal resources, I think these interventions should be part of the education sector. I'll be prepared to support increased taxes for education if that's what it comes to.

Tuesday, September 16, 2008

Catholic Medical Ethics and Medical Student Idealism

As I wrote in a post last September, except for the area of reproductive ethics, I'm a big fan of Catholic Medical Ethics, especially the strong commitment to social justice and the deeply held view of medicine as a calling. So when I saw that the National Catholic Register had an article called "Health Care, U.S. Style: What's Wrong with Our System...and How We Got It" I went to the website.

I wasn't disappointed. The article exudes moral passion.

What struck me most was the last three paragraphs:
“The key to the crisis in American health care today is that it violates essential norms of justice and charity on both sides of the physician-patient relationship,” the Catholic Medical Association’s 2004 health-care document states. “It impairs the ability of the physician to decide and act as Jesus would, and it ignores the dignity of the poor in countless ways.”

...Retired surgeon Passinault agrees that serious problems exist. Yet, he remains hopeful, citing the selfless attitudes that predominate among the second-year medical students who take his medical ethics course at the Grand Rapids branch of Michigan State University’s College of Human Medicine.

“I’m actually quite impressed with the humanitarian perspective of young medical students,” Passinault said. “I really do think the majority of students enter their profession with those kinds of attitudes — we just have to be good role models so they know they’re not alone.”
I agree with everything here (except that as a Jew I might substitute Moses Maimonides for Jesus). But I think the order is wrong. The first of the three paragraphs should come last.

Dr. Passinault, a retired surgeon who chairs the ethics committee at St. Mary's Hospital in Grand Rapids, and with whom I had an excellent conversation at an ethics meeting, is right about the idealism that most medical and other health professional students bring with them into the field. The failings of our health system are not caused by deficient idealism, but by structural factors that "violate essential norms of justice and charity [and, as a result] impair the ability of the physician to decide and act as [Jesus, Maimonides, Schweitzer, Mother Theresa, Jane Adams, and other moral leaders] would..."

We won't improve the health system by preaching to or scolding practitioners. We need to make the system within which they work support "essential norms of justice and charity." The biggest challenge is better stewardship of shared resources so that we can achieve full coverage, support safety net programs, and allow our idealistic students to graduate without huge debts. When we've achieved more justice and rationality in the system our students graduate into, preaching about ideals and scolding lapses will become more relevant.

Monday, September 15, 2008

Comparative Effectiveness of Antipsychotic Medications for Children and Adolescents

As a member of the American Psychiatric Association, I get a daily feed of news about psychiatry and mental health. The story today is "Study indicates newer antipsychotics may be no more effective than older medications for pediatric psychotic symptoms."

The National Institute of Mental Health, sponsor of the study (called TEOSS - "Treatment of Early Onset Schizophrenia Study"), summarizes it as follows:
The TEOSS team randomly assigned the children to eight weeks of either olanzapine (Zyprexa) or risperidone (Risperdal) — both new generation atypical antipsychotics — or to the older conventional antipsychotic molindone (Moban) plus benztropine, a medication often used to reduce side effects like uncontrolled shaking or tremor that can be associated with molindone. The children were monitored throughout the study by an NIMH oversight board to ensure their safety.

Response rates after eight weeks of treatment were comparable among the three medications — 50 percent of the children taking molindone improved, 46 percent taking risperidone improved, and 34 percent taking olanzapine improved. Children taking olanzapine or risperidone improved within the first two weeks, while the children on molindone improved within three weeks.

The treatment groups did differ in side effects. The children taking olanzapine gained about 13 pounds (6 kilograms) during the trial on average, while children taking risperidone gained about 8 pounds (3.6 kilograms), and those taking molindone did not gain weight. The olanzapine group also showed increases in cholesterol levels and other metabolic disruptions that may have become dangerous. The outcome prompted the safety review board to end the olanzapine arm of the study in 2006.
What struck me most in the first descriptions of the study and its implications was how careful the researchers were to avoid talking about health care costs. This is consistent with my sense that serious attention to the cost of care is still a forbidden academic activity outside of health policy circles:
"Atypical antipsychotics are commonly used to treat kids with [early onset schizophrenia], but these results question the wisdom of that approach," said lead author Linmarie Sikich, M.D., of the University of North Carolina at Chapel Hill. "They also remind us that we need to develop safer, more effective medications to treat these children, given the limited effectiveness of both the atypical and the conventional medications."
Dr. Jon McClellan of the University of Washington, a co-author of the new study and of the current guidelines for treating childhood schizophrenia, said in a telephone interview that older schizophrenia drugs should now be considered as an alternative in some cases. “Some of the children in this study gained 15 pounds or more in eight weeks,” Dr. McClellan said. “That’s as much as adults gain in a year on these medications. Children are especially susceptible to these side effects, and this has broad implications across the board, for the use of these agents to treat any disorder.”
If I were a state Medicaid director, or responsible for a pharmacy benefit management program, rather than pussyfooting around the fact of finite resources and the implications of this comparative effectiveness study, I would go to the community of child psychiatrists, pediatricians, and advocacy groups, and say "In light of the TEOSS findings [and other studies], is there a good reason why we shouldn't institute a fail first policy that favors the most effective, least costly medication option, and plan for other uses of the money we save, whether for other child services or to reduce overall costs to everyone?"

Sunday, September 14, 2008

Business Ethics, Medical Ethics and Autism

How does a society make ethical progress with regard to stigmatized health conditions like autism?

Advocacy helps. Preaching, as by the prophets of old, can make a difference. But capitalism and the profit motive is sometimes the most powerful force.

An article in today's New York Times travel section - "Bypassing the Roadblocks of Autism" - describes the problems families with children with autism have in taking vacations. People with autistic spectrum disorders often have great difficulty with new environments. Waiting on lines at an airport, passing through security checks, sitting still in an airplane or on a bus, can be major challenges for someone with autism. And autism often impairs the capacity for constructive communication, so a stressed out child with autism can become part of a destructive spiral, as in the situation of a 2 year old who was chucked off (see here and here) an American Airlines flight in June for pitching a fit about the safety belt.

But families with autism represent a potential market for the travel industry. Families with (1) children with autism and (2) money can (3) afford vacations if the opportunity is given to them. That's a market niche. Entrepreneurs catch on. An organization called "Autism on the Seas" offers to "service the cruising needs of families and individuals faced with autism." The Smugglers Notch resort in Vermont offers an "adaptive program" (SNAP) for people with disabilities, including autism.

Ethical progress often depends on farsighted, charismatic individuals like Mahatma Gandhi and Martin Luther King who identify a problem and lead others into new attitudes and behaviors. But those of us who are concerned with ethics and advocacy need to recognize that often the most powerful force for change is someone else's desire to make a buck. Wise prophets will hope that businesses that cater to stigmatized populations can make profits of their own!

Friday, September 12, 2008

Medical Tourism and Medical Ethics - At Home and Abroad

I'm a clinician and an academic. For insights into medical ethics, health policy and the health system, I typically turn to case reports and research studies, not to the source of this posting - supermarkets!

Hannaford is a 125 year old supermarket chain, with 27,000 employees ("associates") and 164 stores in the northeast. Since 2000 Hannaford has been part of the Dehaize Group, a 141 year old Brussels-based food retailing company with 2,700 stores in 7 countries (Belgium, Germany, Greece, Indonesia, Luxembourg, Romania, and the United States).

Like many large companies in the U.S., Hannaford is self-insured for its health insurance. (For non-U.S. readers - "self-insured" companies pay for the health care costs of their insured employees themselves, and hire insurance companies to handle typical insurance functions like paying claims. It is usually cheaper for the company to provide health insurance this way.)

Hannaford made the news in January by offering incentives to its employees to have procedures like hip and knee replacement done in Singapore, which delivers comparable quality at a significantly lower cost. Peter Hayes, director of health benefits at Hannaford, reported that "after the announcement, I got calls from several U.S. hospitals offering to match Singapore on pricing." Now Hannaford offers the same incentives to employees who travel to U.S. hospitals that meet quality standards at a price that is competitive with Singapore.

Anyone at all knowledgeable about health policy knows that the U.S. incurs sky-high costs but provides mediocre quality. Until self-insured companies began to act on this information by encouraging employees to seek care abroad, the national reaction has been nil. Self-insured companies like Hannaford are familiar with outsourcing business functions that can be done more cheaply elsewhere, so outsourcing medical care wasn't a far out idea for them. Now hospitals around the U.S. are noticing the loss of business and are taking price competition seriously.

One reason the U.S. health system is in such a mess is fragmentation. The population is divided into hundreds of thousands of employer groups, unions, etc., the cost of whose care is covered by thousands of different insurers. We think more and more in individual terms. The way the system is organized makes it hard to get the big picture. Unlike virtually every other developed country, no one takes overall responsibility for population health.

This is what makes Hannaford so interesting. The parent company is based in Belgium. According to Hayes:
"Hannaford's new coverage policy was prompted by stinging criticism from its European owners. For them, medical costs and outcomes in the United States just don't add up. [They said] look at what they're spending in the United States. It's two or three times what they're spending in any other industrialized country. But if you look at quality, [the U.S.] is ranked dead last. So the Europeans said, 'why is health care going up at this extraordinary rate in the United States?'"
I've come around to the view that our employer-based health system, which is so dysfunctional in so many ways, may be the most promising source of learning and reform. Employees are part of a community - the company they work for - and are in a better position to understand the cost and quality of their health care and the impact of cost on wages and corporate success. We in the U.S. have fought tooth and nail against facing the need to make trade offs in health care. But employees can understand that higher costs trade off against lower wages and possibly even loss of a job. And they can see the implications of having joint replacements at their local tertiary hospital or, assuming comparable quality, at lower cost in Singapore.

I don't think anyone designing a health system from scratch would create the hodge podge of employer-based insurance and thousands of insurance companies we have in the U.S. But as of 2008 that's what we've got. If we wait for reform to come from the top down we may still be waiting when Godot finally arrives. But as more self-insured companies enagage seriously with health system dynamics, we may see important learning emerging from the ground up.

Wednesday, September 10, 2008

Health Plans, Health Care Costs, and Medical Ethics

This week I had occasion to review the eight page report from the July meeting of the Harvard Pilgrim Health Care Ethics Advisory Group (which I chair) on "An Ethical Framework for the Health Plan Role in Containing Health Care Costs." I characterized the situation of health plans as follows:
Health plans are in the middle of the health care system. They design and sell benefit programs, receive premium income from corporations, government agencies, and individuals, contract with and pay providers for delivering care, and monitor/analyze all the transactions. From one perspective, health plans are powerful players in the system – without reliable payment for services the system would screech to a halt. From another perspective, health plans are – in a term President Nixon used – “weak, pitiful giants” that control neither the inputs (money) nor outputs (care delivered), but are held responsible when things go wrong.
The group reviewed U.S. experience with managed care. During the managed care era (approximately 1980 – 2000), U.S. health care policy asked health plans to take central responsibility for managing costs. Health plans used network contracting and utilization review to shape practice patterns. For a few years the cost trend decreased. But the public rebelled against the imposition of limits, and “managed care” became a term of abuse. Insurers backed off from managing care, and the cost trend went back to double (or more) the rate of inflation.

Given that the discussion took place in a group devoted to reflection about ethics, it isn't surprising that the group saw ethics - meaning (a) identification of the values actually being applied in a domain (like health care), (b) deliberation about the values we believe should be applied, and (c) specification of ways to move towards the preferred state, as potentially important for the effort to get a grip on health care costs. Values play a major role in determining the choices we make (as individuals and as a society) about how much and what kinds of medical care to provide, and, more broadly, in determining the way we govern our health care system. Without shifts in values, our society will not make the hard choices required to control health care costs.

On reviewing the discussion, four points stood our for me:

1. A physician participating in the discussion felt that in principle it is ethically acceptable for third party payers not to pay for high cost/low benefit interventions. But he emphasized that physicians largely do not want to be put into the role of making judgments about the cost-worthiness of interventions for their patients (unless the patients are self-paying and ask for the physician’s help in making decisions about their own expenditures). And, even if physicians were willing to make these decisions, there would be too much variation from physician to physician for that approach to be fair. The physician concluded that “we need rules about cost-worthiness to be set at a high level in society…not at the level of the individual doctor and patient.”

2. Human nature leads vendors – from retail stores to hospitals – to seek maximum profit. Similarly, it leads individuals who (a) believe that a medical intervention offers them more benefits than risks, and (b) have insurance that will pay for the intervention with other people’s money, to (c) become vigorous advocates for receiving the intervention, since (d) cost is not part of their equation. This is the rationale for the movement to Consumer Directed Health Care. The hope of CDHC is that consumers will begin to include cost-worthiness in their health care decisions, just as we do in our decisions about food, housing, education, and charitable donations, as well as the more commonly cited domain of consumer electronics and automobiles. The Ethics Advisory Group endorsed the aims of CDHC, but was largely agnostic about what the impact of this form of insurance design will turn out to be.

3. The discussion emphasized the potential for employers to take a strong role in the effort to manage costs. Employers are not simply purchasers of insurance. They are also small communities in which the employer and the employees have a shared interest in getting maximum bang for the buck with regard to health benefits. Every dollar spent on health care that produces less than a dollar’s worth of benefit reduces employee income and impedes the enterprise's success. One participant described how the employees of a small company met as a group each year to discuss their health insurance choices and to reflect on trade off decisions. This process heightened employee understanding of the interaction between health insurance, wages, and the company’s success, and led to innovative planning that kept the company's recent renewal close to the increase of the CPI.

4. Several Ethics Advisory Group members cited the tiered pharmacy benefit as an exemplary health plan contribution to ethical cost containment. With regard to physicians, the tiered benefit does not put them into the middle of cost management. Instead, physicians can act as advisers to their patients as to the least costly way to achieve the desired result. Patients retain a wide range of choices, though higher tier options will cost them more. And, the evidence base is relatively stronger for pharmaceuticals than for many other areas of medicine, which makes the tier assignments potentially more understandable and acceptable for patients and providers.

Ethical deliberation about cost containment requires facts about the drivers of costs and values that guide decision-making. Because health plans have distinctive access to data about the care experience of their enrollees, they can support ethical deliberation about costs by providing potentially actionable information to consumers, employers, providers, and the concerned public.

Monday, September 8, 2008

From Mental Health Patient to Peer Counselor

Last week I received a letter from a former patient - someone I first met during my residency who now lives elsewhere in the country - describing work as a peer counselor. Over the years the person (as part of the disguise process I'm avoiding terms of gender) has had to struggle with a very severe psychiatric ailment, with multiple hospitalizations, episodes of substance abuse, suicidality and more. For me the trajectory from the initial role of disabled patient to the new role as helpful peer is inspiring. Here are some excerpts from the letter:
1. Almost every work day I sit down 1 to 1 with a client who is either anxious, depressed, or has a myriad of problems, some of which I can help with, some for which moral support is enough, some for which advice is appropriate, and some that require referral.

2. I help some clients with their job search. We look on line and also check the local paper. I sit down with each one and do role playing, as in an interview. Clients seem to find that helpful. We then struggle to write a reasonable resume. This can be difficult. Many clients here are not well educated and don't have a good work history. It is a challenge but we keep plugging away.

3. I accompany clients to various appointments when necessary. For example, one client is a young parent (a recovering alcoholic) whose child has been diagnosed with ADHD and needed an evaluation. The client asked me to go to the appointment and sit in on the discussion with the doctor. Another situation is X, who was diagnosed with brain cancer. X's spouse, who is also a client at the Center, was devastated by X's illness and could not provide good support. I accompanied X to the hospital so many times I can't count. I'm glad to say that X is currently in remission. There are a hundred other little stories.

4. Another counselor and I run a "share and support" group twice weekly. It's pretty popular and well attended.

5. We help people find housing too. That's about it!
Peer counseling programs didn't exist when I was a resident. Innovators like my mentor Gerald Caplan proposed the concept, but at the time it was seen as a far out idea.

My former patient's recovery process reflects hard work, innate abilities that have weathered the disease process, and strong support from facilities in the new location. The example of effective peer support in AA and NA has helped the wider community recognize the possibility that people recovering from severe psychiatric ailments could provide powerful support in the way AA and NA sponsors often do. Consumer advocates have fought for recognition of the peer counselor role, and many state and federal agencies have endorsed the function (see here).

So while my former patient's story reflects courage, resilience and innate strengths, the environment offers opportunities and supports that were not present at the onset of the illness forty years ago. It has been a difficult life, but the letter I quoted from conveys a sense of pride and self respect.

Sunday, September 7, 2008

Oregon Moves Ahead with Health Care Reform

On September 3 the Oregon Health Fund Board (OHFB) posted a draft of its health care reform proposal - "Aim High: Building a Healthy Oregon." The OHFB will receive comments at a series of public meetings around the state and through written submissions during the month. It will then revise the draft into a final report to Governor Kulongoski and the legislature.

I won't try to summarize the very readable 78 page report. But if the legislature enacts the major recommendations, Oregon will again be in the forefront of health policy and health care reform.

Here are five of my initial observations about the proposal:

1. The proposal is ambitious, and recognizes that tinkering with the current system will accomplish nothing. Although it is replete with practical action steps, the proposal envisions "educative leadership" as a crucial necessity -"Your Board, on behalf of all Oregonians, believes that in order to address [the failings of the current system], we must transform our thinking about health care." In former governor John Kitzhaber, Oregon has a model of what "educative leadership" can mean.

2. The central paradigm in current U.S. health policy is competition and consumerism. Our thinking about health care is atomistic, focused on individuals making choices about treatment and benefit plans, with providers competing with each other to sell themselves. The Oregon proposal focuses on improving the health of the entire population, and emphasizes collaboration more than competition, as in its concept of "learning collaboratives":
Sharing by those doing the delivery of care with each other is a key tool to improve the delivery of care. Improvement efforts are at the core of collaborating with those doing similar types of work to understand how to look at systems of clinical settings and improve the quality and efficiency of each step...Learning collaboratives allow healthcare providers and their clinical staffs to share information about quality improvement and best practices."
3. The proposal retains private insurance, but it envisions a strong role for state government, largely through its proposal for an Oregon Health Authority. The overarching strategy for the Authority " for the state - in partnership with communities - to act as a smart purchaser, an integrator of health care and community services, and an instigator of community-based innovation." Whereas Medicare Part D forbids Medicare from using its purchasing power to bargain over prices, the Oregon proposal would have the Oregon Health Plan (Medicaid) and the public employees plan, which together would represent 1,000,000 people, more than 1/4 of the state population, use the leverage prohibited to Medicare.

4. Oregon received world-wide attention for its use of a prioritized list of health services to conduct an open, explicit rationing process. The proposal envisions using the prioritized list, but rather than bifurcating its benefits into covered/uncovered, it would institute a system of value based benefit design. Services that provide substantial benefit would be covered in full. Services less well supported by evidence or more optional in nature, would require progressively more cost sharing. All this would be put onto a graded basis in accord with individual income level.

5. The states are clearly where the current action is in U.S. health policy. States are learning from each other. Massachusetts, Minnesota, Vermont and other states figure prominently in the rationale for the Oregon proposal. My impression is that the systematic dissing of government that has dominated the national scene since the start of the Reagan presidency has less force at the level of state government. In particular, the ethical imperative to get a grip on health care costs appears to be more discussable within states. State governments are required to balance their budgets, making the fantasy that only greedy insurance "bean counters" care about cost harder to sustain in state-level discussions.

I hope that we will be able to welcome Oregon back into its earlier leadership role in health policy as the current reform process proceeds!

Thursday, September 4, 2008

Recovery from Stroke, Medical Ethics, and Hope

Recent articles in the New York Times and Boston Globe guided me to an important, rather technical article in the journal Stroke - "Treadmill Exercise Activates Subcortical Neural Networks and Improves Walking After Stroke." (The article itself isn't yet available on the web.)

Researchers in Baltimore tested the effect of treadmill exercise on patients whose ability to walk had been impaired for several years by a stroke. Stroke victims are commonly told not to expect further improvement after a year of rehabilitation efforts. In the Baltimore study six months of three times a week treadmill exercise led to substantial improvement in walking. And, most suggestively, functional MRI studies showed improvements in underlying brain function.

Over the years several patients in my psychiatry practice who had experienced strokes had been told that they had reached maximum post-stroke improvement. I told them not to believe it. I explained that while I had no expertise in the neurology of stroke, we know the brain is a clever organ, and it simply didn't make sense to me to assume that we could be sure that its functioning could not improve further. Over the years some patients improved. Some didn't.

The underlying clinical and ethical issue is how to deal with uncertainty. All physicians have seen patients and families who suffer from refusing to give up. They expend endless time, effort, emotion, and money in a futile attempt to change something that is not going to change. The most helpful thing in this situation is to help them accept the sad reality, grieve, and ultimately move on.

Physicians are rightly concerned about encouraging pathological forms of false hope. But it is often possible to help people get to more complex attitudes. The situation is bad and may not get better. That calls for grief and the best adaptation we are capable of. But physicians aren't omniscient. Perhaps things will go better than we expect. We want to be open to that possibility, and - within reason - do what we can to promote it.

Combining grief about what has happened, acceptance of reality and adaptation to it, and hope for positive change, is a complex but achievable state. Being able to help patients and families get to this point depends a lot on the skill and temperament of the clinician. But the organizational setting has a role as well.

When I joined the practice of the Harvard Community Health Plan HMO in 1975 I was asked to develop an outpatient program for patients with chronic mental illness. I reviewed the research literature and concluded that a group-based program would be the most promising design. But the insurance benefit set a 20 visit limit for mental health services.

The HMO (a) tweaked the benefit to remove limits for the continuing care group, (b) found a room that could accommodate a group that would have different numbers of attendees each week, and (c) made a coffee machine available. The flexible structure made it easier to deal with the ambiguities of health and human destiny. For years the continuing care group was reliably in the same place at the same time. Patients know they could be there as needed. If they had better things to do with their time that was fine. If they hit a bump they could return. If regular contact served them best, we could offer it.

It's not uncommon for health organizations to force a binary choice on patients and clinicians - either the patient is "sick" and in active treatment or "well" and on his own. Wisely, the HMO didn't do that. In retrospect I am proud of the way I worked with the many patients who used the continuing care program. But I'm equally impressed with the way the HMO made it possible to do the work.

Monday, September 1, 2008

Cancer, Pregnancy and Medical Ethics

Yesterday's New York Times Magazine has an excellent article by Pamela Paul - "With Child, With Cancer" - about the clinical and ethical dilemmas associated with cancer during pregnancy. It's an important clinical area I knew nothing about. But my reason for encouraging readers to look at the article is that it exemplifies the kind of journalism we need more of.

Cancer in pregnancy creates the most vexing form of ethical conflict - good vs good. Effective treatment is good for the mother, but it may harm the developing fetus. And, information about the impact of chemotherapy on pregnancy outcome is limited.

The article presents vignettes of exemplary ethics process. Three stood out for me:

Paul describes how in 1997 Dr. Elyce Cardonick at Cooper Union Hospital in New Jersey encountered a pregnant patient with cancer. She scoured the literature and found a report from Mexico claiming that chemotherapy in pregnancy could be safe for the fetus. Cardonick brought the question of offering chemotherapy to the hospital ethics committee.

That was the right thing to do. The stakes were high, and while a single case report was suggestive, it proved nothing. Bringing the issue to the ethics committee enriched decision-making with a wider range of perspectives and made the case part of a wider learning process. (The treatment was given and the baby emerged in good health.)

2. In 1995 Patty Murray, 35 years old, was 17 weeks pregnant with her third child, when metastatic breast cancer was diagnosed. With great trepidation she underwent treatment, with happy outcome for baby (now a 12 year old who likes to play basketball) and mother (now 13 years post diagnosis and initial treatment).

Murray used her experience to help others, by participating in the founding of the Pregnant with Cancer Network, an organization that offers information and support to women who face the situation she encountered in 1995. The website is impressive. It emphasizes the importance of registries to track and learn from experience and offers to link pregnant women with cancer with peers who have experienced the same situation.

Metabolizing personal experience as Patty Murray did into opportunities to help others and foster learning in the health system is a key contributor to ethical health process.

3. Finally, Paul gives several examples of thoughtful collaboration between physicians and their patients in trying to craft a prudent clinical approach in complex circumstances. She conveys a picture of risk/benefit analysis in a reader-friendly manner. The underlying message is that physicians, patients and the public need to recognize uncertainty, approach it in as evidence-based a way as possible, and use the values of the patient in weighing the various benefits and risks.

We need more journalism like this to help us approach health policy in a more thoughtful and informed manner. Thanks to Pamela Paul!