The Soon-to-Emerge Price War in Massachusetts Health Care

Massachusetts Attorney General Martha Coakley, fresh from her disastrous campaign for Ted Kennedy's senate seat, is back on the job. Last week her office released an important report - "Investigation of Health Care Cost Trends and Cost Drivers."

Federal health reform may be in hospice care, but Massachusetts reform is alive and kicking. Here are the key findings from the report:

• "Price variations are not correlated to (1) quality of care, (2) the sickness or complexity of the population being served, (3) the extent to which a provider is responsible for caring for a large portion of patients on Medicare or Medicaid, or (4) whether a provider is an academic teaching or research facility. Moreover, (5) price variations are not adequately explained by differences in hospital costs of delivering similar services at similar facilities.
  

  Price variations are correlated to market leverage as measured by the relative market position of the hospital or provider group compared with other hospitals or provider groups within a geographic region or within a group of academic medical centers.
  

  Price increases, not increases in utilization, caused most of the increases in health care costs during the past few years in Massachusetts.
  

  The commercial health care marketplace has been distorted by contracting practices that reinforce and perpetuate disparities in pricing."
  

The AG concludes that approximately 75% of the overall cost increase in the past four years is driven by unit prices. The rest is utilization.

The report is defined as a work in progress. But official acknowledgement that the prices insurers pay are not linked to outcomes is likely to rile up the legislature and perhaps the public as well.

The AG's findings should not be surprising. Ten years ago Tufts Health Plan went to the mat with Partners HealthCare (a system that includes the Brigham and Womens' and Massachusetts General Hospitals) in contract negotiations. Partners threatened to drop Tufts and the health plan capitulated. It had to. Without those prestigious hospitals in its network Tufts would not have been competitive.

Without naming names, the report refers to contracting practices that drive costs up, such as this one: "providers with market leverage are able to obtain contractual provisions that prohibit or inhibit insurers from creating limited network products and/or tiered products that might steer patients away from them." In other words, a health plan that wanted to give consumers a choice - pay more for access to "highly branded" providers or forgo that access - could not do so.

The AG's report is the opening salvo in what will be a widening conversation. A new round of hearings on health costs will begin in March. And the gubernatorial campaign will heat up soon after that.

Nothing in the report will be new to folks who are at all informed about health care and the health system. But what's needed to move the reform process is a more informed public, not more expertise among the wonk community. What has scuttled the federal effort at reform is the absence of a coherent public voice pressing for meaningful reform. The AG's report may help Massachusetts have a more reality-based political proces.

In particular, the AG's clear statement that the prices we pay through our insurance system are not linked to value - which is obvious to those who work in health care - may prod us (the Massachsetts public) to a deeper consideration of (a) what we value in health care, (b) how to assess it, and (c) how to make our payment system serve the values we care about. That consideration will stir a lot of conflict. But there's a chance that the conflict in Massachusetts will have more to do with the real issues than the "death panel" and "government takeover" nonsense that's swamped the federal effort.

Psychiatric Ethics in Boston

While reading yesterday's Boston Globe over coffee I encountered two stories about courtroom trials that raise central issues in psychiatric ethics along with the legal matters the trials are about. Two in one day!

The Globe reported that Dr. Kayoko Kifuji testified in trial of Carolyn Riley, who is charged with murder in the death of her four year old daughter Rebecca. The prosecution alleges that Carolyn and her husband Michael, who will be tried separately, overdosed Rebecca with psychiatric medications, causing her death.

The issue in psychiatric ethics isn't murder, but Dr, Kifuji's prescribing major tranquilizers for Rebecca starting at age 2. Based on statements by Rebecca's mother, Dr. Kifuji diagnosed Rebecca as having bipolar illness, and prescribed strong doses of three powerful medications.

All I know about the case is what I've read in the paper. That a psychiatrist can (a) diagnose bipolar disorder in a two year old, (b) based solely on the mother's reports of behavior, without (c) extended inquiry into what was happening in the family or (d) additional information from day care workers and others, is, alas, (e) symptomatic of the current state of U.S. psychiatry. Forty years ago, at the peak of psychoanalytic thinking, mothers were confidently diagnosed as "schizophrenogenic' - that is, as causing schizophrenia by their cold, rejecting attitudes. Now we diagnose two year olds in a comparably confident manner.

What's needed is much more humility and curiosity. Humility about the limits of our knowledge. When I was in training my teachers assumed the truth of psychoanalytic explanations. Now we tend to assume the truth of neurological explanations. The real truth is that our understanding of complex phenomena is still rudimentary. As a result we need to be more curious to delve more deeply into the lives of the people we deal with - their biology, their psychology, and the social contexts in which the concerns are arising.

The other story concerns a malpractice suit brought by Ken and Danielle Lambert against McLean hospital and members of its staff, alleging responsibility for "wrongful deaths" of their 5-year-old daughter, Kaleigh, and 4-year-old son, Shane who were killed when Danielle's twin sister carried the children into traffic on Interstate 495 in a state of psychosis. (See here for a post about the events.)

Once again, my only knowledge of this case comes entirely from the media. The ethical issue that stands out for me involves confidentiality. Here's a relevant quote from the Globe:

The Lamberts told the Globe after the deaths that McLean psychiatrists had diagnosed Thibault with bipolar disorder in September 2007 and discharged her six days later after prescribing psychotropic drugs and recommending outpatient therapy. But, the couple said, doctors never told family members about the risk Thibault might pose to others or herself.

"Had they been warned of this potential," the Lamberts’ lawyer, Andrew C. Meyer Jr. of Boston, said yesterday, "they never would have allowed the children to be in her care that night."

...The Lamberts face significant obstacles in their suit, including confidentiality laws that limit what medical providers can disclose to third parties...

Psychiatry is not good at predicting danger, especially given that the tragic incident took place four months after Danielle Lambert's sister was discharged from McLean. What "interfered" with the Lamberts receiving any warning may well have been that clinical evaluation gave no indication of risk. In that case, concerns about confidentiality played no role.

But over the years I've seen innumerable situations in which mental health clinicians let an overly rigid understanding of confidentiality regulations trump common sense and thoughtful ethics. If clinicians believe that patients are dangerous to themselves or others, there are all kinds of ways of conveying relevant information to family members.

The best, of course, is to explain to the patient why one wants to convey the information, to discuss how best to do it, and to get permission to go ahead. Asking for permission can be done wimpishly - "may I talk with your XYZ?," dropping the topic at the first whiff of a "no," or vigorously - "I really think we should talk with XYZ about ABC," persevering in an effort to persuade.

It's also possible to give information indirectly. A clinician who is concerned about possible risk could say to a family member - "it's difficult to predict, but in illnesses like this there can be a risk of dangers..."

And, it's always possible to do what one thinks is right even if doing so violates the letter of the law. Society, and juries, expect clinicians to be devoted to the well being of their patients and relevant others, not simply to be slaves to regulations. I recall a number of situations in which I (a) was not able to get a patient's permission to convey information to someone else, (b) felt that doing so was in the ultimate interest of the patient as well as the third party, (c) told the patient what I was going to do, and (d) carefully documented my rationale. In most of these situations my patient and I remained on good terms, able to continue to work together.

In ethics discussions, it's common for students and seasoned clinicians to ask first - "what's the law about this situation?" My response is - "our job is to decide what we think the right thing to do is. Once we know that we can ask the lawyers - "how can we to [the right thing] most consistently with the law."

Ethics first. Then law.

Facebook, Psychotherapy, and Professional Ethics

Melinda Lewis, who teaches Social Work at the University of Kansas, raised fascinating questions about social media and social work ethics on her excellent "Classroom to Capitol" blog yesterday. I've excerpted four from her post, with my responses in italics:

1. Every social media expert advises that success requires an infusion of ‘personality’ in order to connect with one’s followers. I get this–I see that I receive much more response to tweets or Facebook updates, for example, that include some personal tidbit–but it makes me wonder, when does this raise the risk of dual relationships? How much disclosure is too much disclosure? How do we engage with our targets without blurring those boundaries in potentially harmful ways? Should you ever ‘friend’ a client? Now that the opportunity exists, is it harmful to the professional relationship to decline?

By "dual relationships" Melinda presumably means situations in which a social worker or other mental health clinician betrays professional responsibilities by carrying out other agendas with the patient. (The extreme form of this in my own profession occurs when psychiatrists have entered into sexual relationships with their patients.) In principle it's easy to assess the ethical appropriateness of "disclosure" - does it serve the interests of the patient, and is it consistent with the norms of the profession? In practice it can be tough to figure out. Being too stiff and formal tends to undermine clinical trust and effectiveness. But "inappropriate" disclosure can distract from the goals of the treatment and, potentially, lead down a path to various forms of harm.

The best way to "engage...without blurring boundaries" is to be aware of the question and to consult with colleagues at moments of uncertainty. The problem I see with "friending" a client is that Facebook, unlike email, isn't 1:1. I felt entirely comfortable using email with my patients. But Facebook, by design, is a networked process. One isn't just communicating to one's patients or being communicated to in one's clinical role. I'm not in practice any more, but my current sense is that I'd be using email more and more with patients, but not Facebook.

A patient who proposes "friending" to a clinician might be hurt by a decline, or, at the other extreme, relieved. What would be harmful to the professional relationship would be not reflecting on what was wished for in the request and how the decline was interpreted.

2. What about confidentiality? While any ethical social worker would refrain from including personal details about clients in social media interactions, is it ethical to, for example, include some of the outline of a client interaction on a personal blog? Assuming that all identifying information is changed, does that make it okay? What about if the blog receives ad revenue that goes directly to the social worker?

I found the following a useful rule of thumb: if I drew on material from a particular patient, it should be disguised well enough so the patient's next door neighbor would not recognize who I was talking about, and if the patient read what I wrote he or she should feel respected. Advertising revenue is not different in principle from honoraria for talks or royalties for books, but advertising has the risk that the patient might not want to be associated with the advertiser.

3. Should social workers be allowed to blog or post or tweet about their organizational life, including frustrations with their practice setting? You see employees do this all the time, from “TGIF” Facebook updates on a Friday afternoon to generic “so sick of my boss” comments on different sites, but, given social workers’ obligation to our employers, are we forbidden from engaging in this kind of catharsis?

Writing about organizational life is fine if it's thoughtful reflection about professional issues. But we shouldn't kvetch about work conditions - that could undermine the confidence other patients have in the organization. If we're critical of our work sites our responsibility is to advocate for change, fix things, or, if it's not tolerable, get out.

4. Given the viral and unpredictable nature of social media use, how can we really ever receive informed consent from our clients for their participation? For example, a client gives permission for a photo to be posted on the agency’s blog, but then the blog gets tracked back by several other blogs, and someone tweets the post…and this is exactly what your organization wants, in terms of the response from the community, but now many more people have seen it, and in different contexts, and probably with adding their own commentary…and that’s not what you told the client when you asked permission.

These complexities mean that we should envision these possibilities with our patients - a series of "what if" questions. Years ago my practice group had a policy against using unsecured email with our patients. I didn't follow the policy. But when patients wanted to use email I made sure they understood that email could be hacked, and that my group advised against using it. If they understood the limitations of email security, and if I thought email advanced our clinical objectives, I went ahead and used it. But Melinda is right that the risks are harder to anticipate with social media.

Where Are We Now in the Health Reform Process?

,In 1973, after Massachusetts was the only state not to vote for Richard Nixon's reelection, bumper stickers appeared all over the state: "Don't Blame Me - I'm From Massachusetts."

Now our bumpers should read - "Blame Me for Health Reform tanking - I'm From Massachusetts."

I've been reading the pundits and mulling over where we are in the effort to get a better grip on our out-of-control health system. Everyone who wants reform is in a regrouping mode. Here's some of my current thinking:

1. I hope the legislature passes something. I don't know what kind of a "something" our political process will allow, but it's crucial to show that we the people, through our government, are not totally impotent with regard to managing the health system.
   
   Experienced psychiatrists know that when we work with demoralized patients with chronic ailments who've given up hope that change is possible, an early success, however trivial, builds momentum for achieving more substantial goals. That's where we are with health reform. A baby step is better than no step.
   
   
2. It appears that the mandate for each individual to be insured has elicited an especially strong backlash. Here's what s 55 year old New Hampshire resident said about the mandate - “I won’t pay it! And I’ll shoot the first person that tries to make me go to jail because I will not buy health insurance.”
   
   As I said last spring in "The Ethics of an Individual Mandate," there are only two ways to get to universal insurance coverage - tax that pays for everyone or a requirement that individuals get coverage (with financial support for those who need it). Now that the federal mandate is going down the tubes it's just a matter of time until a state creates its own single payer system. The California legislature has given CPR to a universal coverage bill that was tabled last year (see here). If a Democrat is elected governor in November a single payer plan for the state could have traction. I hope that happens somewhere - it will be a crucial experiment, just as Massachusetts is.
   
   
3. Small business owners have also been vociferous in opposing the expectation that they would provide health insurance for their employees. If I ran a small business I'd feel the same. The cost is ridiculous, and the services provided by the purchase don't feel worthwhile. It's hard to find a primary care doctor with time for new patients, visits feel rushed, and the system itself is best described as "high tech/low touch." Small business owners feel they're not getting value for money, and they're right!
   
   I have the privilege of co-leading a "patient-doctor" seminar in a superb primary care residency (see here to learn about the program). We've just finished interviewing candidates for the 2010 - 2011 internship. The applicants were brilliant, accomplished and idealistic. But their passion for providing care was focused almost exclusively on underserved populations in the U.S. and abroad. Virtually none were contemplating a career in the mainstream U.S. system. I connect their lack of enthusiasm for the mainstream system with the small business owners' lack of enthusiasm for buying insurance. Paying huge premiums is bad enough. But if it feels as if the expenditure isn't providing comparable value, it's worse.
   
   
4. Even the tea party folks don't think things are hunky dory in the health system. But it's looking as if we're not prepared to allow the government to launch a large makeover. As the bills progressed through the Senate and the House, the scope of reform kept getting whittled down. "Health system reform," which is what we need, turned into "health insurance reform," which is just one piece. And now it looks as if even these whittled down efforts are too much for the populace to swallow.
   
   In Massachusetts, where many of the elements of the Senate and House bills have been in force for three years, support for the reform process remains strong. It looks as if we're more prepared to trust our state governments than the federal government. Since scuttling the federal effort doesn't put out the health system fire, we should expect to see heightened reform activity at the level of states, self-insured employers, and organized medical groups.

For the foreseeable future I think the mantra for those, including myself, who believe our system requires radical reform, should be - "think globally, act locally."

Should Royal Caribbean Cruise Ships be Landing in Haiti Now?

The January 17 Guardian shows this photo of a huge white Royal Caribbean cruise ship anchored offshore at Haiti with tourists floating in the water at the private enclave the company maintains at Labadee, sixty miles from the epicenter of the earthquake:


Royal Caribbean has been blasted for bringing tourists to bask, swim, eat and drink while people were injured and dying not far from the compound. Cavorting in the sun adjacent to devastation and tragedy seemed morally repulsive to many.

Here's the ethical analysis Adam Goldstein, President and CEO of Royal Caribbean posted in his blog:

My view is this — it isn’t better to replace a visit to Labadee (or for that matter, to stay on the ship while it’s docked in Labadee) with a visit to another destination for a vacation. Why? Because being on the island and generating economic activity for the straw market vendors, the hair-braiders and our 230 employees helps with relief while being somewhere else does not help. These 500 people are going to need to support a much larger network of family and friends, including many who are in (or are missing in) the earthquake zone. Also, the north is going to bear a good part of the burden of the agony of the south, and the more economic support there is to the north, the better able the north will be to bear this burden. People enjoying themselves is what we do. People enjoying themselves in Labadee helps with relief. We support our guests who choose to help in this way which is consistent with our nearly 30 year history in Haiti.

In deliberating about the ethics of a decision we should start from a clear understanding of the facts. Goldstein doesn't tell us if the cruise ship prevented rescue and relief ships from landing. If it did, the answer is in. Rescue and relief should take first priority over all else. If these were the facts, Royal Caribbean should have paid its employees and offset the losses the vendors incurred and released the docking spaces to rescuers and relievers.

But suppose bringing in the cruise ship did not interfere with access to the island for others. What then?

If these were the facts, I believe that from an ethical perspective, Royal Caribbean should not be faulted. Had I been a passenger on the cruise ship I would have found the idea of landing at Labadee deeply unseemly, much as these two tourists quoted in the Guardian article did:

"I just can't see myself sunning on the beach, playing in the water, eating a barbecue, and enjoying a cocktail while [in Port-au-Prince] there are tens of thousands of dead people being piled up on the streets, with the survivors stunned and looking for food and water."

"It was hard enough to sit and eat a picnic lunch at Labadee before the quake, knowing how many Haitians were starving. I can't imagine having to choke down a burger there now."

But I would have understood Goldstein's analysis. Not landing could be seen on the analogy of not visiting a sick person because of the potentially painful contrast between our health and their debility. I've seen this happen in my medical practice, with the result that the sick person feels ever more isolated and abandoned.

In terms of ethics education, the Labadee landing created a teachable moment. If I'd been the cruise director I would have organized a meeting on the ship (a) to give information about the earthquake, (b) to present the ethical rationale for docking, (c) to hear back from the passengers, and (d) to give information about how people could contribute to the relief effort.

By chance my wife and I were on a week's holiday at Guadeloupe, 300 miles from Haiti, when the earthquake occurred. Even at that distance we experienced an element of "unseemliness" in being able to enjoy another part of the Caribbean while the Haiti tragedy unfolded. We thought of the old "There But for Fortune" Joan Baez song:

Show me the prison, show me the jail
Show me the prisoner, whose life has gone stale
And I'll show you, young man,
With so many reasons why
there but for fortune, go you or I....

While I don't see Royal Caribbean's decision to land at Labadee as unethical (assuming that rescue and relief operations were in no way harmed) I think it was unwise. It gives the appearance of callousness. The best decision would have involved ensuring that employees and vendors were kept whole in economic terms, emphasizing that Labadee was available for bringing in rescue and relief materials (even if it wasn't used that way), and making alternative arrangements for the cruise itself, presumably by landing elsewhere. This would have allowed the Haitian employees and vendors who would otherwise be serving the tourists to participate in help efforts or simply to pray and grieve. It would have been the more respectful course of action.

The Looming Epidemic of Safety Net Hospital Dialysis Program Closures

I've done three recent posts on the crisis at Grady Hospital in Atlanta that has led to closure of its dialysis program. (See here, here and here.)

As I predicted, the problem is spreading. Now Jackson Health System in Miami-Dade county is closing a dialysis program that has been serving 175 South Florida patients.

Jackson is a prototypical safety net program, as evidenced by these statements from a video about the system: “we proudly step forward when others step back,” “people turn to Jackson when they have nowhere else to go,” and “when there is nowhere else to turn we reach for the impossible every day.”

The details about Jackson are different from Grady, but the underlying theme is the same. Like Grady, Jackson serves large numbers of uninsured patients. In 2008 it spent more than $500 million on charity care. But it ran a deficit of $200 million, which is clearly unsustainable. The dialysis program was losing $4 million per year. I haven't been able to ascertain how many of the 175 dialysis recipients are undocumented immigrants.

For the moment, none of the dialysis patients are in a crisis situation. Some have been able to get onto public insurance programs. Some are having their treatment continued for now at the dialysis centers Jackson contracts with. And some are coming to the emergency department for emergency treatment, which is paid for by emergency Medicaid funds.

The next steps in the scenario are predictable. Jackson will be blamed for (a) not caring and (b) poor management. Undocumented immigrants will be blamed for coming to the U.S. and "milking the system." Government - county, state and federal - will be blamed for underfunding. Citizens will be blamed for refusing tax increases.

There's probably a bit of truth in each blame statement. But the result of all the finger pointing will be more impasse. The dialysis recipients will suffer, and some may die prematurely.

This isn't just a Miami problem, any more than the Grady situation is just an Atlanta problem. Insofar as the dialysis patients are uninsured citizens it's a national problem. And insofar as some are legal or undocumented immigrants, it's an international problem.

I'm not wise enough to know what the best solution for this safety net problem is, but I do know the best way to find it.

We need to convene a working group to scope out the dimensions of the problem and identify options for action. The ideal convener would be the Secretary of Health and Human Services (or her designate - perhaps the Assistant Secretary for Health). The Medicare End Stage Renal Disease Center would be a key participant, as would the National Association of State Medicaid Directors and safety net providers, perhaps via the National Association of Public Hospitals & Health Systems. Because a substantial portion of the patients who are put at risk by program closure are immigrants, the Office of Citizenship and Immigration Services should be represented. And, because programs sometimes try to send immigrants back to their countries of origin, largely in Mexico and Central America, the Bureau of Western Hemisphere Affairs in the State Department should have a voice.

This may seem like overkill for a problem that involves a relatively small number of people. But the values at stake are central to who we are as a country and to the way others see us. Abu Ghraib involved very few people, but for millions, at home and abroad, it is, and should be, a source of shame. It won't take many stories, photos and videos of dying people "dumped" back to their villages, to do the same.

The problem isn't an easy one. But we should not be leaving it to individual safety net programs to struggle on their own, either by swallowing what will ultimately be unsustainable debt or by taking emergency action based on an inevitably narrow perspective.

Unfortunately, we are more likely to leave the problem to our frayed safety net than to kick it upstairs, where it belongs. That means that in 2010 and 2011 we'll be seeing more Gradys and Jackson Health Systems

(I learned about the Jackson Health System situation from a recent article by Kevin Sack of the New York Times, who has done brilliant reporting on Grady.)

Tony Judt Teaches us about Lou Gehrig's Disease and the Unthinkable

At the start of my residency training in psychiatry, my bookish colleagues and I asked the training director - "what should we be reading?" He responded - "your patients will be your text book - listen to them and you will learn what you need to know."

The training director's advice - that our most crucial learning would come from our direct experience with patients - was totally correct. But if he'd read accounts of the experience of illness like "Night" by Tony Judt in the January 14 New York Review of Books, he would have been more positive about reading as well as listening.

Tony Judt is a brilliant historian and director of the Remarque Institute at New York University. Eighteen months ago he was diagnosed with amyotrophic lateral sclerosis (ALS - Lou Gehrig's disease). In "Night" he starts teaching us about the experience of ALS. Apparently other installments will follow.

Here are some excerpts that were especially powerful for me. My reactions to what Judt tells us are in italics:

I suffer from a motor neuron disorder, in my case a variant of amyotrophic lateral sclerosis (ALS): Lou Gehrig's disease...What is distinctive about ALS...is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one's own deterioration.

The combination of pain-free clarity of perception and steady loss of function is terrifying. Judt's spare, direct prose gives us a taste of the horror of what we see.

Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment's reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs—since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.

When I read this I recalled how much torment it was in childhood to be asked to "keep still," and being asked "do you have ants in your pants" when I squirmed in my seat in primary school. It wouldn't have occurred to me how ostensibly tiny deprivations like the ones Judt cites could be "psychologically close to intolerable," but when he says it, we get it.

Ask yourself how often you move in the night. I don't mean change location altogether (e.g., to go to the bathroom, though that too): merely how often you shift a hand, a foot; how frequently you scratch assorted body parts before dropping off; how unselfconsciously you alter position very slightly to find the most comfortable one. Imagine for a moment that you had been obliged instead to lie absolutely motionless on your back—by no means the best sleeping position, but the only one I can tolerate—for seven unbroken hours and constrained to come up with ways to render this Calvary tolerable not just for one night but for the rest of your life.

Here Judt, a teacher, pushes the class (us, the readers) into a scary thought experiment - "imagine for a moment..." Probably most of us have experienced at least occasional insomnia. Sleep difficulties are one of the commonest complaints in medical practice. But being awake in the dark, unable to move - that's insomnia writ super large!

...even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims...There is no saving grace in being confined to an iron suit, cold and unforgiving. The pleasures of mental agility are much overstated, inevitably—as it now appears to me—by those not exclusively dependent upon them. Much the same can be said of well-meaning encouragements to find nonphysical compensations for physical inadequacy. That way lies futility. Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them.

It's hard to enter into the terrifying experiences Judt makes so real for us. That can lead us into expressions of "support" and "hope" that are meant for ourselves. Sometimes people need to be listened to and agreed with - what they're going through "has no saving grace."

(On October 19, 2009, Tony Judt lectured at the Remarque Institue on "What is Living and What is Dead in Social Democracy." At the start of his lecture he spoke briefly about ALS. The video gives a visual image that adds to the power of his essay.)

Michael Porter on the Employer Role in Health Care Reform

Here's what Michael Porter, the Harvard Business School strategy guru, said about employers in a New England Journal of Medicine article last summer:

We must keep employers in the insurance system. Employers have a vested interest in their employees' health. Daily interactions with their workforce enable employers to create value by developing a culture of wellness, enabling effective prevention and screening, and directing employees to high-value providers. Employers can also foster competition and drive broader system improvement in ways that are difficult for government entities to replicate. To motivate employers to stay in the system, we must reduce the extra amount they now pay through higher insurance costs to cover the uninsured and subsidize government programs. We must also create a level playing field for employers that offer coverage by penalizing employers that are free riders.

Employers didn't envision just how complex their role would become when they began to offer health insurance as a benefit during World War II. Wartime wage controls prevented them from using higher pay to recruit and retain desirable employees. Health insurance (and other benefits) allowed them to compete for the employees they wanted.

If we were designing a health system from scratch we wouldn't make employers so central for making it work. Health and health care isn't the business they're in. But that's the system we have, and we have to play with the cards that we've been dealt!

Employers are well positioned to change the system in positive ways.

1. Getting smarter about costs. Public discussion of health care costs last year was pathetic. If we listen to Democrats we believe "greedy insurance companies" are the villains. If we listen to Republicans we believe that "greedy malpractice lawyers" are the evil-doers. Neither party helped us understand the real drivers of the cost explosion: (1) our belief that more care = better care, (2) the corporatization of medicine, (3) fee-for-service payment, and (4) our national allergy to acknowledging the need for limits.
   
   Employers can educate the 160 million Americans who get health insurance through their work about health costs better than politicians can. How much is the total health bill for the company? What percentage is from insurance costs, and how much comes from the impact of "life style choices" on health and productivity? Are the practice patterns in the community efficient and effective, or is insurance money being wasted? Are individual employees (and their families) doing what they can to promote their own well-being?
   
   All but the smallest businesses are large enough to allow meaningful cost patterns to be understandable. And all but the largest multinationals are small enough for employees to feel allied to the employee population they share health costs with.
   
   
2. Influencing care delivery. Physicians, hospitals, and other providers are difficult for politicians to tangle with. We like and trust our providers more than we like and trust our politicians. But businesses are accustomed to looking at value for money in a matter-of-fact way. They can ask tough questions about whether the health services they purchase are producing good outcomes in an efficient manner or if the system that serves them is fragmented and riddled with waste - which, alas, it is!
   
   Quality circles, Lean, and other employee-centered approaches to process improvement have led to substantial gains in value in manufacturing and other industries. Wherever possible, employees should be enlisted in similar activities with regard to the health care they receive. Efficiency shouldn't be the exclusive province of PhD and MD experts. I appreciated the suggestions I received from my own patients about how I delivered care. Employees could contribute useful front line observations about how care can be delivered in a more integrated and efficient manner.
   
   
3. Improving health. Virtually every area of health has peer-led health improvement activities. AA and NA help with substance problems. Cancer support groups have often been shown to contribute to better outcomes. Peers can help each other stick to healthier diets and get more exercise. Over the years it was more and more common for me to encourage patients to go to the web to see what kinds of help they could get from others who have experienced similar conditions.
   
   When employers identify the areas of health that are most problematic for its workplace community it can encourage and support positive actions by individuals, ranging from weight loss and exercise to diabetes management.

Taking this kind of role with health and health care is demanding, and it isn't the primary concern of the business. But the reform debate shows that for the forseeable future we're wedded to employer-based health insurance. The business sector has tremendous potential for shaping our dysfunctional health care system.

(For additional advice from Michael Porter, see his article "What Should Employers Do About Health Care?"

The Medical Council of India Sets Tough Rules about Pharma

Rema Nagarajan, a journalist friend who writes for the Times of India, brought to my attention a recent ruling of the Medical Council of India about physician relationships with Pharma and other health sector industries. On paper at least, the ruling is very tough! The rules include:

• Physicians shall not accept any gifts whatsoever
  
• Physicians (and their families) shall not accept any paid travel, whether for CME or any other purpose
  
• Physicians shall not accept any "hospitality" (such as hotel accomodations)
  
• Physicians shall not accept any cash payments whatsoever
  
• Any research funding must come through institutions, subject to a range of regulations

India is an international target for drug trials, given the size of its population and the laxness of its human subjects protections. And, many physicians are struggling financially such that attendance at educational conferences, especially outside of the country, was essentially impossible for them, making them prey to the appeal of travel funds or gifts of office equipment.

Rules are one thing and enforcement is another. It's not yet clear what the consequences of violation will be. But the Medical Council has put a strong stake in the ground, for which it deserves international recognition.

(For previous posts about pharmaceutical ethics in India see here, here, here and here. For Rema Nagarajan's article in the Times of India see here.)

Tragic Choices at Grady Hospital (3) - Brinksmanship with Human Lives

Grady Hospital has done the right thing, as I predicted it would in a post last week (here):

Clearly, a safety net provider is accountable for using the funds it receives in the most efficient manner possible. But we the public can't be allowed to turf our moral accountability to the Gradys of the world. We the public created safety net providers to care for the underserved, not to take on the burden of our sins in the manner of Jesus. I believe Grady is right to provoke a crisis over dialysis services. If some of its patients are still in limbo on January 3, Grady can't simply set them loose. It will have to continue to provide for them. But it should keep pointing the finger at its funding sources, with the message that Winston Churchill gave in World War II - "Give us the tools, and we will [do] the job," along with this corollary message - "If you choose not to give us the tools, acknowledge that you are the killers, and take responsibility for your decisions!

In his ongoing series detailing the human meaning of the Grady saga, Kevin Sack of the New York Times tells us that Grady has extended dialysis coverage for another month for 50 uninsured patients, mostly undocumented immigrants, for another month "to help give patients more time to make long-term arrangements," according to Matt Gove, who has the thankless job of speaking for Grady.

Grady is still hoping that the patients will take an active role in figuring out what to do. According to Gove “it should be clear to the patients that there’s a responsibility on their side to continue trying to find a long-term plan because at some point this care won’t be available.”

Many of the patients from Latin American countries refuse to return, since they believe - correctly - that access to dialysis of comparable quality will not be there for them. For some, the explicit plan is to go to an emergency room - quite possibly at Grady - whenever funding for dialysis at Fresenius, the private vendor Grady has contracted with, ends.

No one is suggesting that Fresenius will have any obligation when Grady stops paying. That's the difference between being a safety net provider and a private enterprise.

There are three main ways to approach the problem:

1. Send the undocumented patients back to their country of origin, let them fend for themselves with whatever help the country provides, and hope for the best. (Given the national anti-undocumented attitudes, there will be a lot of support for this option. The ethical rationale for this position is that each country is a fully separate entity responsible for its citizens. Radically different standards of health care are unfortunate, but that's the way it is. Who said life on the planet is fair?)
   
   
2. Leave Grady with the problem, which is what's happening right now. (Mother Theresa and her Missionaries of Charity could care for the dying in Calcutta as long as they had nuns who volunteered to do the work and a space in which to do it. Grady's situation is different. Dialysis was costing it $50,000 per patient per year. In its finite budget Grady has to choose which needs to serve. It can't meet them all.
   
   From an ethical perspective, this is the least justifiable alternative. Grady is a public institution, funded by a combination of county, state, and federal funds. We can't make Grady responsible for the choices we force onto it by our budgetary decisions.)
   
   
3. Address the situation internationally as part of global public health. (This won't be easy, but it's the right way to go. If our national policy is to send the undocumented patients back to their country of origin, we should work with those countries to solve the immediate needs of the individuals, but more importantly, to improve health and economic standards overall. If we continue to pretend that nation-states are self-contained islands, we'll just have more and more Grady-like crises. Sadly, this is what we're likely to do for the forseeable future.)

The U.S. created its end-stage-renal-disease program under Medicare when patients on dialysis were brought to Congress to be seen as individuals. That's what Kevin Sack is doing through his series of stories. (He's my candidate for the next round of Pulitzers!) There's no sign yet that we the public, through the higher levels of government, are paying attention. Perhaps that will happen when the one-month extension Grady has created, or the one after that, comes due.

Tragic Choices at Grady Hospital (2) - Undocumented Patients with End Stage Renal Disease

As I've described in a previous post (here), Grady Hospital in Atlanta closed its dialysis clinic on October 3. Grady is a prototypical safety net hospital. It cares for a large number of uninsured patients - U.S. citizens and undocumented immigrants - and has been on shaky financial footing for several years. The dialysis clinic was losing $3 million per year. On January 3 the three month extension of coverage Grady promised to patients who did not have other sources of dialysis support ended.

Kevin Sack of the New York Times, who has been doing a terrific job covering the Grady situation, recently wrote about Monica Chavarria, a 34 year old married mother of 14 and 8 year old boys, who had been on dialysis at Grady and who returned to her original home in the Mexican state of Jalisco when Grady closed the clinic:

On Dec. 22, she exhausted the 30 free dialysis sessions that Grady had provided at a gleaming private clinic in Guadalajara. On her doctor’s advice, she had been stretching out the treatments...by going two times a week instead of the recommended three. Going without dialysis can prove fatal in as little as two weeks, and the twice-a-week regimen has at times left her weak.

...Everywhere, it seems, there are roadblocks to affordable care. The dialysis unit at Guadalajara’s public hospital, which offers heavily discounted prices to the uninsured, has a waiting list that extends for months. Ms. Chavarria is not eligible for the insurance plan known here as Social Security, which is limited to salaried workers. [And] the country’s five-year-old health program for the uninsured, Seguro Popular, does not cover end-stage renal disease.

Sack's article gave a link to an article in this month's American Journal of Kidney Diseases on care for undocumented immigrants with end stage renal disease (here). The authors estimate that there may be as many as 5,500 undocumented immigrants with ESRD in the U.S. If they were U.S. citizens their care would be paid for by Medicare. But the undocumented are not eligible for the Medicare program, and in most states are not eligible for Medicaid either. Safety net facilities like Grady that undertake treatment of undocumented patients are left holding the financial bag. Grady's no-win ethical dilemma was - risk going down the tubes altogether, and depriving a large population of its services, or put some of the dialysis patients at severe risk.

Kidney physicians have addressed the ethics of the situation Grady Hospital encountered in a thoughtful manner:

1. All health care professionals and health care systems have an ethical obligation to treat the sick.

2. The federal government has the ethical and fiscal responsibility to provide care for patients within the US borders.

3. The financial burden of this care should fall not only on states that have the highest number of uninsured citizens or noncitizens, but also should be a national responsibility.

4. Because of the unique nature of ESRD, all citizens and noncitizens with ESRD should be eligible for emergency federal funding if they do not have insurance or resources to pay for renal-related care.

5. Nephrologists should not be expected to act as agents for the Immigration and Naturalization Service and should not be expected to report undocumented noncitizens because of patient confidentiality and the fiduciary nature of the patient-physician relationship.

The kidney physicians are correct in placing the ultimate ethical (and fiscal) responsibility on the federal government. Immigration is a national concern. Safety net facilities like Grady should not be put in the "hot potato" situation of having lifetime fiscal responsibility for the patients it ministers to. If we play that game the safety net will implode.

Given the national backlash against the undocumented population it's hard to imagine that the U.S. will take on open-ended responsibility for the care of undocumented immigrants. This means that addressing the problem in a humane manner requires international cooperation. It's not clinically or ethically acceptable for the U.S. to "dump" undocumented patients back on the always poorer country the patient came from. If nephrologists and public health specialists from the U.S. and Mexico worked together to create a policy and care framework for patients like Monica Chavarria their care, and the services for other patients with ESRD in Mexico, would be improved.

A Remarkable Health Initiative at the University of New Hampshire

Watching the federal health reform process has strengthened my conviction that the changes our health system needs will have to come from the bottom up, not the top down, and that employers play a key role.

Here's how I put this idea a month ago in a post about employer incentives:

Federal health reform is the front page news, but states and businesses are the laboratories for change. Next to Governors, who have to deal with hideous budget problems driven by declining revenues and escalating Medicaid costs, employers who offer health insurance to their employees are most directly concerned about health care costs.

Health reform requires three ingredients: (1) facing facts, (2) thinking strategically and (3) embracing individual and population concerns. Given the virulent divisiveness of current U.S. politics, employers who offer health insurance are the most promising venue for applying this triad in a "businesslike" manner!

Employer insurance covers approximately 160 million of the non-elderly U.S. population. Because the business world is way ahead of health care in its zeal for (a) casing the environment for good ideas ("benchmarking") and (b) adopting those that work well elsewhere, (c) promising innovations have the potential for rapid diffusion.

I recently came upon the website for Healthy UNH, a remarkable program launched this fall at the University of New Hampshire. The scope of the program is breathtaking, as evidenced by this statement of vision and goals:

Vision: UNH will be the healthiest campus community in the country by 2020.

Values:

1. Transforming health care delivery
2. Creating value for the money we invest in medical care
3. Ensuring that the care we purchase is the right care at the right time
4. Following medical care practices that are evidence-based
5. Improving the health of our entire community, spanning multiple locations and audiences
6. Sustaining health and health care
7. Collaborating across our community
8. Engaging and educating our community
9. Advancing mental and physical well-being
10. Promoting work/life balance

The website includes action plans for changing the way care is delivered to the UNH community, educating the community about what's driving the cost trend, encouraging the use of evidence-based cost effective care, and increasing wellness-promoting behaviors. It's a comprehensive program about enhancing the bang for the bucks the University invests in health insurance (for approximately 2,800 faculty and staff) and improving the health of the entire community, which includes 15,000 students.

It's too early to know what the Healthy UNH program will accomplish. But the way the program is conceptualized can show other employers how worksites can become a force for health literacy, promotion of wellness, and delivery system change.

Over time, as more employers take a holistic approach to promoting health, reforming health care delivery, and getting a grip on runaway costs, state and federal legislators will get the message. Our leaders will lead us better when the front lines show them what needs to be done and how to do it!

(Additional posts about worksite initiatives are available via the "Employer Insurance Ethics" tab. See also a New England Journal of Medicine article - "The Employer as Health Coach.")