Thursday, November 27, 2008

More About the "Engage with Grace" Project

Yesterday I joined with other bloggers in a "blog rally" to (a) encourage ourselves and our readers to talk with those we are closest to about our wishes for end of life care and (b) to present a simple tool that could facilitate these discussions.

I learned from yesterday's Boston Globe that I'd gotten the story of the Engage with Grace project wrong in an important way. When Rosaria Vandenberg was close to the end of her life the hospital recommended that she stay. Although her brother did not know what Rosaria's wishes would have been - they hadn't had the kind of conversation Engage with Grace encourages - he took her home. Her two year old daughter, who had been afraid to touch her in the hospital, snuggled up to her in bed at home. Rosaria, opened her eyes for the first time in a week and gazed at her daughter. She died peacefully the next night at home.

Rosaria's family family felt it had made the right decision bringing her home, but wished they had talked openly with Rosaria about the values that were important for making the decision. Alexandra Drane, her sister-in-law, launched the Engage with Grace website to encourage others to have the kinds of conversations they wished they had had with Rosaria.

So many contributions to health care ethics come from individuals and families who learn deep lessons from their encounters with illness and mortality! These are gifts we can be thankful for.

Wednesday, November 26, 2008

A Tool for Discussing Wishes for End of Life Care

Paul Levy, President and CEO of the Beth Israel Deaconess Medical Center and author of the superb "Running a Hospital" blog, told me about Engage with Grace, a program that offers a simple and powerful tool for talking with those we love about our own end of life care wishes.

The website tells a moving story about Rosaria Vandenberg, a 32 year old woman who died from a malignant glioma, the same cancer that Senator Kennedy has. In light of Rosaria's wishes, the family helped her die at home, which allowed important loving exchanges with her two year old daughter.

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones "know exactly" or have a "good idea" of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They're about all of us. So the first thing we need to do is start talking.

The Engage with Grace "One Slide Project" was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: create a tool to help get people talking. The tool is a single slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. A group of like-minded bloggers are asking people to share this one slide wherever and whenever they can - at a presentation, at dinner, at their book club.

Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven't had.

We are encouraging readers to download the slide and share it at any opportunity - with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. We should all commit to being able to answer these five questions about end of life experience for ourselves and for our loved ones and to helping others do the same.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(This post draws on material written by Alexandra Drane and the Engage With Grace team.)

Monday, November 24, 2008

Coming Soon - An Overdue Debate About Free Market Health Care

Today I learned that PhRMA, the pharmaceutical lobbying group, is about to launch a multimillion dollar PR campaign on behalf of free-market health care (see here). Television ads are scheduled to appear soon. (I'm not much of a TV watcher, so if the campaign has already started, I haven't seen the ads.)

PhRMA has reason to be concerned. The fact that Medicare Part D forbids Medicare to bargain over drug prices got lots of negative attention during the campaign. That issue, along with the latest analysis of private Medicare health insurance plans, which reaffirms concern that the Bush administration's effort to privatize Medicare - especially the private fee-for-service plans - may be adding cost without adding benefit (see here), make it likely that the Obama administration will be taking a very hard look at the U.S. health system's reliance on free-market mechanisms.

The debate is not likely to line up as "conservative business" against "liberal government." Businesses like PhRMA and device manufacturers that sell health care services will line up on behalf of the "free market." (I put the term into quotes because the market is obviously not free, as in the policy decision not to allow Medicare to bargain over drug prices!) But businesses that buy health services for their employees may well line up in favor of new forms of regulation. Some businesses may lobby to bring the U.S. system of employer-based health insurance to an end.

My strongest hope is that debate about the health system becomes more evidence-based. Since the Reagan administration U.S. political dialogue about health has been dominated by free market theology - a faith-based belief that a "free market" will by divine ordination drive improvements in value and cost as it does for manufactured goods. But the pendulum is swinging. Less than a month ago former Federal Reserve chair Alan Greenspan, a faith-leader for "free markets," acknowledged with "shock" that his faith that markets would regulate themselves to serve the public good was "flawed."

As I wrote the previous paragraph lines from Matthew Arnold's poem "Dover Beach" popped into my mind:

The Sea of Faith
Was once, too, at the full, and round earth's shore
Lay like the folds of a bright girdle furled.
But now I only hear
Its melancholy, long, withdrawing roar,
Retreating, to the breath
Of the night-wind, down the vast edges drear
And naked shingles of the world.
The global economic crisis appears to be prodding the sea of "free market" faith into retreat. We in the U.S., who have guided our health system by that faith for 30 years, are in for an interesting ride!

Wednesday, November 19, 2008

Hospital Branding, Money, and Ethics

A recent article by the Boston Globe investigative "Spotlight Team" about the differential payments Partners Health Care receives ("A Healthcare System Badly Out Of Balance") has the Massachusetts health policy community in an uproar.

The gist of the article is that Partners hospitals (most notably Brigham and Women's and Massachusetts General) and physicians are paid 15% - 45% more for treatment not demonstrably better than other facilities provide. Since (a) Massachusetts, like other states, is choking on high health care costs and (b) hospital and physician billing accounts for more than 85% of insurance costs, the story is causing waves.

What struck me most about the article is how much investigation was required for an area of public interest that should be transparent. The Spotlight Team had to rely on private insurance data revealed by one or a series of Deep Throat sources. Although the Massachusetts Health Care Reform law created a Quality and Cost Council, because of technical difficulties and controversy about the quality of the data there have thus far been no reports.

With a new administration coming to Washington in two months we will soon see a new level of challenge to our faith-based reliance on market forces to improve health care quality and cost. Less than a month ago former Federal Reserve chair Alan Greenspan acknowledged "shock" that his faith that market self-regulation would serve the public good was "flawed." Proponents of giving market mechanisms more time to control runaway health spending will have to produce evidence for the likelihood of success rather than simply invoking the sacred truths of ideology.

The U.S. has thus far been reluctant to venture far into tiered networks of hospitals and physicians. It's technically difficult to assess quality and efficiency. But we haven't been reluctant to transfer financial risk to individual patients in the form of high deductibles, asking them to do what we typically ask health plans, Medicare and Medicaid not to do!

Between the economic crisis and heightened skepticism about market solutions for the health care system we can expect to see a mixture of (a) an accelerated, last ditch effort to use market mechanisms like tiered insurance networks in which patients have access to all providers but pay much more for those judged to be lower in quality and efficiency and (b) heightened regulation, including the possibility of moving to a single national insurance plan.

Let's hope for more thoughtful and in-depth deliberation about health policy choices than we have seen for the last eight years.

Tuesday, November 18, 2008

Self-Insured Employers and Medical Ethics

This is the annual open enrollment time at many employers. (I have to make my own insurance choices for next year by Friday.)

In the past, employers - especially large ones - have offered a wide array of health insurance choices.

That's changing fast. Many companies, including large ones like Nissan and Delta Airlines, are offering only high-deductible plans to their employees.

According to the benefits director at Nissan the high-deductible plans are “aimed at getting people to focus on their health...when you are spending your own are more careful in the way you spend it.” Common sense economics suggests this is true. Notice that no reference is made to how the careful spending will be conducted and what the potential clinical impacts might be.

The Delta spokesperson dips into wishful thinking: “We felt it was important to offer a plan that encourages participants to manage their health care and maintain their health and enables them to get the most out of their health care dollar. We find that when people get engaged in their health care they generally get healthier.”

Insofar as companies assume that financial risk alone will transform employees into discerning "consumers" of health care I believe they are living in la-la land. For urgent treatment, like hospital care or cancer chemotherapy, "patients" will not morph into "consumers" and shop around. And for the entirely valid domain of optional choices - whether to do a non-emergency MRI, or whether to choose a branded drug rather than a generic - good information on cost and quality is all too often lacking.

But as I've been thinking (and writing) recently, self-insured employers can make a significant contribution to public understanding about health care dynamics if they capitalize on the degree to which employees and management have a shared interest in getting a grip on costs.

If I ran a small self-insured business or was benefits director at a large one I'd meet with employees (in person or electronically, depending on logistics) way before the open enrollment period and put out all the facts I had about insurance costs and their impact on wages. I'd bring in someone who could facilitate deliberation about alternative strategies for bending the cost trend. And, if possible, I'd bring in a wise and respected local physician to educate the group about the areas of medicine that would benefit from discerning consumerism on the part of patients. My ultimate aim would be to engage employees and management in thinking about the trade offs cost containment requires.

My guess is that a robust workplace process would produce creative new ideas about health insurance processes, the same way quality circles, which started in Japan almost 50 years ago, have produced creative new ideas about manufacturing processes.

It's only a matter of time before multispecialty medical groups go to self-insured companies to propose "deals" akin to the original HMO concept, in which a medical group takes resonsibility for care of a population at a guaranteed price. If the employees looked over the proposal, considered the benefits (presumably good care at a better price) and trade-offs (use of a limited network) this idea, and others that are just being thought of, like choosing to build medical tourism into the plan, will come to the fore.

This kind of front line activity will not transform the broken U.S. health "system." But efforts at large scale transformation have a habit of crashing and burning. And even if the time becomes propitious for system-wide change, the more we as a population have deliberated about health care choices the way I envision happening in self-insured employers, the more able we'll be at handling systemic change.

(For additional information, see this excellent New York Times article - "Employers Offer Workers Fewer Health Care Plans.")

Friday, November 14, 2008

The American Psychiatric Association and Mental Health Parity

The latest issue of "Psychiatric News," the American Psychiatric Association's newspaper, has an informative article on the recently passed mental health parity law. If you're interested in the dynamics of advocacy or in mental health policy, the article is very worth reading. (I wrote about aspects of the law in a previous posting.)

A year ago I wrote about "Ethics and Elbow Grease" -
"Organizational ethics isn’t just about hospitals, group practices and health plans.The larger system within which health care occurs can usefully be regarded as a form of organization structured – for better or worse – around values. Advancing key values requires elbow grease. And time."
The APA has been working on behalf of parity for 30 years. That's time!

The otherwise excellent APA article leaves out one inconvenient truth. Parity wouldn't have been achievable without managed care. It's only because the mental health carve out companies that psychiatrists love to hate have demonstrated that mental health care need not be a bottomless pit of ever increasing cost that the lobbying could be effective.

Here's how James Scully, the APA Medical Director, summed up his view about progress in ethics:
"You don't get what you want just because your cause is right and just. You have to do the hard work of building coalitions and getting allies."

Wednesday, November 12, 2008

Medical Tourism, Self-Insured Employers, and Medical Ethics

Wellpoint, which provides health insurance to 35 million, is starting to pilot medical tourism. The initial numbers are small - Serigraph, a self-insured printing company in Wisconsin, with 700 employees.

But when an elephant puts a toe in the water it's big news! (Elephants actually have toes, but they're inside their feet.)

The pilot allows patients to go to hospitals in Bangalore or Delhi for joint replacement and spinal fusion. Patients who go to India would have no out-of-pocket expenses or deductibles. Their travel, and travel for a companion, would be covered. I couldn't find out how much patients would save by going to India, but the self-insured employer would save between $30,000 - $50,000.

So why am I writing about this in a blog about ethics?

Here's why. Better governance of the U.S. health "system" requires better public understanding of the dynamics of the industry. Currently, public understanding is pitiably low. Employees tend to believe that their employers pay for health insurance, and don't understand that they're the ones who pay (through forgone compensation). Patients tend to believe that more care is always better care, and that what the physician recommends is ipso facto "medically necessary." Physicians tend to believe that Americans are incapable of accepting limits, and that they must therefore recommend any intervention with the slightest chance of providing benefit without considering costs. And woe unto anyone who doesn't automatically agree that "health is priceless."

Companies like Serigraph are - potentially - small communities. Workers know each other, and when labor-management relationships are good, there is opportunity for open deliberation about health care choices. Self-insured businesses can - potentially - take a truly business-like approach to health care, as by asking "what do we get for our money?" and "how do we get the biggest bang for the bucks we spend?" And large self-insured companies, even if widely dispersed geographically, can orchestrate electronic town meetings on important topics.

I can't think of any health policy mavens who recommend basing health insurance on employment status. But that's the system we have for the foreseeable future. Once five or ten self-insured employers demonstrate the potential for thoughtful deliberation about health care and can show bottom line impacts, like the Serigraph-Wellpoint medical tourism benefit, we'll see others emulating the practice. That process will contribute, at least a bit, to improved health policy literacy in the United States.

Activist Disease Foundations, Rationing, and Medical Ethics

Yesterday's New York Times had a moving article about the Parkinson's Disease foundations formed by actor Michael J. Fox and former Intel CEO Andrew Grove, both of whom have Parkinson's.

The Times focuses on the activist approach the two foundations are taking. Fox and Grove run their foundations like entrepreneurial businesses. They don't give grants and sit back to see what truths emerge. Here's the Fox Foundation mission statement:
"The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease within the decade through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today."
The source of the passion behind the two foundations is obvious. Finding a cure for a bad disease is a worthy cause. Finding a cure for a bad disease we or someone we love is afflicted by is a consuming passion.

Here's what concerns me. We don't currently have the courage to set limits on what we spend on health care in the U.S. Perpetual cost increases 2-3 times the rate of inflation are - at a population level - as deadly as cancer. Businesses fail because of health care costs. Education and other life-advancing sectors are deprived. Individuals lose big chunks of potential income.

But no individual suffers from this economic cancer the way Michael Fox and Andrew Grove suffer from Parkinson's. As Howard Hiatt warned in 1975 in "Protecting the Medical Commons: Who is Responsible?" the realistic answer is - everyone and no one. Protecting the common good does not have the fire power of finding cures for diseases we have been touched by.

Foundations like the ones Fox and Grove have endowed are all to the good. But like medical treatments, they have unintended side effects as well. As long as we have a health system in which insurers simply pass on the increased charges from hospitals and clinicians to employers and government, the economic cancer will grow.

The various ideas bandied about for curing the economic cancer - disease management programs, better use of IT, reducing administrative costs, and many more - are good ideas, but they are palliative, not curative. We wont get a grip on the population disease caused by the economic cancer until we establish true budgets for health care. When we do that we, as a society, will learn how to deal with limits the way the Michael Fox and Andrew Grove have learned how to deal with the limits imposed by Parkinson's disease.

Tuesday, November 11, 2008

Hospitals, Ethics, and the Uninsured

Three cheers for print journalism!

For a rich understanding of the human impact of not having health insurance, look at the superb (but long - 5,000 words each) articles in Sunday's Washington Post and New York Times.

The Post describes a three day "medical camp" at the Wise County fairground in southwest Virginia run by the Remote Area Medical Volunteer Corps. The Corps provides free medical services to under served rural areas - initially in developing countries, but now in the U.S. as well.

Wise County is poor. Coal industry jobs are dwindling. The average income is $14,000. Medical care is scarce. Uninsurance is high. 2,700 people were treated during the three day camp. A 60 year old woman was treated for out-of-control diabetes. A man in his 50s had an egg sized cyst removed from his face. So did his son! A 31 year old woman who was born with a cleft palate and had not been able to afford dental care as an adult had her diseased teeth removed and was fitted with a special denture.

Rotting teeth, a disfiguring facial cyst, and out-of-control diabetes are shameful anywhere, but especially in a developed country. But the Times' description of how uninsured immigrants are often shipped home is more shameful yet. Sister Margaret McBride, a vice president at St. Joseph's hospital, from where 19 year old Antonio Torres was sent back to Mexico in a coma, put the dilemma this way:
"We're trying to be good stewards of the resources we have...We're trying to make sure that the acute care hospital is available for individuals who need acute care...We can't keep someone forever."
There's no overall policy or common approach to the situation and little support for institutions caught in the middle. Each hospital is on its own.

The volunteers who provide free outpatient services in Appalachia can make a gift of their own time. But hospitals have to pay for the beds that are occupied out of their limited resources.

I doubt that Sister Margaret is a worse human being than the volunteer surgeon who removed the egg sized cyst. From the St. Joseph website I learned that it is a 113 year old not-for-profit hospital. Here are excerpts from its mission and vision statements:
"[St. Joseph's]...affirms the dignity of the human person and the sacredness of all life. We exist to foster the healing ministry of the Catholic Church...we will:

* Deliver compassionate, high quality, affordable health services

* Provide direct services to the poor and advocate on their behalf

* Create partnerships that improve community health.

We believe:

...In the sacredness of all life, and therefore in the dignity of the human person and the promotion of human wholeness;

In a spirit of mercy that cares for the suffering and the dying;

In a spirit of hospitality that welcomes all in need;

In the rights of all persons to quality health care and our responsibility to act as advocates for the poor and those with special needs;

In the stewardship of resources for the enhancement of human life..."
I'm not cynical about St. Joseph's values. But if all they did was ship Antonio back to Mexico without picketing the state house they have failed their own commitments. Hospitals like St. Joseph's are in an impossible situation. They can't on their own make up for what our national and local safety net doesn't provide. But sending a comatose young man out in an ambulance isn't just harmful to him - it's corrupting to those who carry out the process.

We in the U.S. need to take responsibility for situations like Antonio's in a systematic manner, rather than leaving things to each institution and hoping for miracles. Happily, on Monday the AMA House of Delegates voted to gather the facts about forced repatriation and develop a policy to advocate for.

Hospitals can't solve the problem by printing money. But health care institutions can't repatriate sick people without losing a piece of their soul with each episode.

Saturday, November 8, 2008

Ethics and Extortion

Express Scripts, one of the largest pharmacy benefit management (PBM) companies in the U.S., recently reported a security breach and a blackmail threat. Here's what the company said on a website it established for concerned customers:
In early October, Express Scripts received a letter from an unknown person or persons trying to extort money from the company. This unknown person or persons threatened to expose millions of the company’s members’ records on the Internet if the extortion threat was not met. The extortion letter included personal information on 75 members including their social security numbers, addresses, dates of birth, and in some cases, prescription information.

Express Scripts notified the FBI immediately after receiving the letter and there is an official investigation underway. We also notified the members whose information was contained in the extortion letter. The company has also launched its own investigation with the help of top experts in data security and computer forensics.

While we are unaware at this time of any actual misuse of any members’ information, we understand the concern that this situation has caused our members.

This site is designed to keep you updated on developments concerning that situation and to provide you with important tools and resources to help protect yourself against identity theft.

We are taking this situation very seriously and want to reassure you that we are committed to doing what we can to secure your data.
This is VERY bad news. PBM data bases are a crucial source of information for the kind of epidemiological research and comparative effectiveness studies that can allow us to improve outcomes and slow down the cost trend.

A year ago, in a posting on "Information Technology, Ethics, and Integrity," I wrote:
It is increasingly true that IT functions as the nervous system of health organizations. It shapes our capacity to communicate with patients and colleagues. At its best IT enables wide communication combined with privacy protections. It can enhance or impede the quality of clinician-patient relationships.
The security breach at Express Scripts will add to the public's fear about electronic data bases. This isn't just a technical problem. At its best, IT allows us to coordinate our disastrously compartmentalized health system and do much more for our patients. Good ethics isn't just a matter of endorsing good values. We have to be able to put those values into action. Loss of faith in the integrity of health data will tie our hands.

Friday, November 7, 2008

Jewish Law and the Meaning of Death

This morning's Washington Post has a poignant story about 12 year old Motl Brody who - by brain criteria - has died.

Motl's parents are Orthodox Jews who define death as the moment when the soul leaves the body, for which the criterion is cessation of heartbeat. Motl, though dead, is on "life support" interventions, which sustain cardiac function.

While not all Orthodox Jews define death as Motl's family does, their belief is not idiosyncratic. Their rabbi supports them, and many (the percentages are unknown) within the Orthodox community support them as well.

The case will be heard in D.C. Superior Court on Monday. The connection to the explosive U.S. controversy about abortion is obvious. Many opponents of abortion base their view on their religious belief as to when the soul enters the body. Motl's family's refusal to allow "life support" to be removed is based on their religious belief as to when the soul leaves the body. While their view has fewer adherents, the structure of the standoff is the same - a contest between secular society and religious conviction.

There are obviously crucial differences. A fetus, unless spontaneous abortion occurs, will come to birth. Motl, whose brain has been invaded by cancer, will not come back to life and regain consciousness unless a miracle occurs.

For the Children's National Medical Center, where Motl is, and all those who and accept the brain-based criteria of death, sadly, he is dead. For his family and a segment of the Orthodox Jewish community, sadly, he is gravely ill, but alive. The similarities to the paralyzing abortion controversy are obvious. This poignant situation may go to the U.S. Supreme Court if Motl's heart continues to beat despite the sad fact of his being dead.

Tuesday, November 4, 2008

Women, Health Insurance, and Health System Ethics

The recent report that women pay much more than men of the same age for individual health insurance has led to a spate of outraged articles about unfairness and gouging.

The outrage and indignation are directed at the wrong target.

In the 1965 film classic "The Battle of Algiers," Colonel Mathieu, the French military leader (modeled on General Massu, the actual army leader) tells reporters who object to his brutal methods that they have a choice. If they want France to win they're by necessity endorsing his methods. If they reject his methods they relinquish French rule in Algeria. (If you haven't seen the video you're missing a masterpiece.)

Almost certainly some insurers are gouging. But if we choose to have a health system that dis aggregates the population into ever smaller units - ultimately to individuals - and ask that each unit pay in accord with its own utilization of health care, we'll get just what the study showed. So let's not blame insurers.

To quote another masterpiece - Pogo Possum, in Walt Kelly's comic strip - "we have met the enemy and he is us." As we have seen in the election campaign, policies based on collective interests, in which one party (such as the healthy) subsidize others (such as the sick) are "socialism." And in the U.S. lexicon, that's very bad.

Charging individuals different premiums because of different health needs is wrong. Whether or not we see health care as a "right," health is a basic human good. As a civilized society we have a collective obligation to each other to protect health to the extent our resources allow.

But we've been on a steady path of dis-integrating our human fellowship. One result is the insurance differential for women that leaves us shocked, shocked. But like Colonel Mathieu, the insurers who are being vilified are doing exactly what we, the body politic, are asking them to do.

Let's hope that after the election this piece of news about insurance differentials leads us to look into the mirror and place the blame where it belongs.