Sunday, August 28, 2011

Why the U.S. Isn't Ready for Single Payer Yet

Dr. Samuel Metz, an anesthesiologist in Oregon, has a letter in the August 27 New York Times arguing for a single payer system in the U.S. Several responses follow.

I wanted to write about the exchange especially for European friends I spoke with on a recent trip. They were universally puzzled - "how can it be that you in the States don't have health care for all?"

Dr. Metz is obviously correct. No sane society designing a system from scratch would create the cockeyed U.S. non-system. The hodge podge we have is a result of history (making health insurance an employment benefit during World War II) and theology (our faith in free markets even when experience tells us they don't work).

To help explain - to myself and others - why we in the U.S. are so resistant to doing the obvious right thing, here's one of the responses to Metz, with my comments interlaced in bold italics:
Dr. Metz’s call for single-payer national health care imposes costs on taxpayers rather than directly on those being served. Note the assumption that shared responsibility for health care is unjust. Would the writer do away with police, fire depart-ments and public education because they "impose costs on taxpayers" rather than "directly on those being served"? Patients are not charged more for services they value the most or are more costly to provide. If I want more costly clothes or a sports car, it's clear that I should be responsible for financing my own preferences. But if you get cancer, would it be right for me to say "the chemotherapy is costly, and you value it most, so you should pay for it yourself"? Extending the model of optional purchases to chemotherapy for cancer or appendectomy for appendicitis turns health care needs into consumer whims. But needs and whims are not the same! Tax bills simply rise in sync with something else like income, property or sales. Here the writer assumes the single payer is passive and helpless in relation to prices and service patterns. That's actually how our "free market" system behaves! Single payer systems, and other forms of universal coverage, are much more active in managing the cost trend than the invisible hand of the U.S. market is.

It takes no leap of faith to understand how this will affect demand for health care. Anyone who has dined at a fixed-cost food buffet knows the outcome of not directing price with food portions. Comparing medical care to "a fixed-cost food buffet" again shows the writer's underlying framework - health care is like hot dogs, a trivial matter of consumer whim. Patients who don't need chemotherapy or appendectomy don't ask for these services just because they're paid for, even if they do eat an extra hot dog at the buffet. And there's no reason that a single payer system couldn't apply value-based principles, with full coverage of needed services for which there are no alternatives, but partial or no coverage for low value services, or services that have less costly equivalents.

It is tempting to believe that government will fairly and efficiently make these choices for us, but experience suggests otherwise. The writer is flat-out wrong. Citizen satisfaction is significantly higher in countries with publicly financed universal coverage, and health outcomes are as good or better. He's revealing his theology - blind faith that governments are always bad/markets are always good. Dr. Metz appears to anticipate this problem given his suggestion that Congress’s power to tax is indisputable and so government will predictably raise taxes to pay for growing demand for health care.


San Luis Obispo, Calif., Aug. 25, 2011
The writer is a professor of economics at California Polytechnic State University, San Luis Obispo.
Professor Marlow is an accomplished scholar. The fact that such a well-informed person subscribes to the political and economic theology his letter evinces shows why the U.S., alas, is not yet ready to give serious consideration to publicly financed, not-for-profit health care. If Vermont's single payer program succeeds, that will chip away at our reflexive anti-government/anti-communitarian approach to the health system.

All kinds of economic interests - the "medical-industrial complex" - favor the status quo, but the faith-based beliefs Professor Marlow's letter exemplifies are the largest impediment to steering our system in the direction virtually every other developed country has taken.

In talking about U.S. health care theology with my European friends I quoted Schopenhauer: "As a serious conviction, it could be found only in a madhouse; as such it would then need not so much a refutation as a cure."

Friday, August 26, 2011

"Still Alice" and the Ethics of Dementia

Several friends had urged me to read "Still Alice," a novel by Lisa Genova about a 50 year old Harvard professor and mother of three who develops early onset Alzheimer's disease. So when I saw it on a bookshelf where my wife and I were vacationing recently (a tiny village on the French-Italian border in the foothills of the Maritime Alps - but that's a story for another time), I pounced on it.

My friends were right. I'd urge you to read it as they had urged me.

Alice is a distinguished professor of cognitive psychology. Her husband John is an equally successful cancer biologist. Anne, their oldest, is married to a fellow lawyer, and trying to get pregnant. Tom, the middle child, is a Harvard Medical School student, heading for a career in cardiothoracic surgery. 22 year old Lisa is studying acting in LA. It's a stable, altogether successful family.

The problem enters in the second sentence: "[Alice] needed to finish her peer review of a paper submitted to the Journal of Cognitive Psychology before her flight, and she'd just read the same sentence three times without comprehending it."

Alice's initial experiences will make most readers worry about themselves. She forgets names and can't remember what's on her to do list. But when she forgets how to get home from a location that should be very familiar, she gets scared, sees her primary care physician, is referred to a neurologist, and the diagnosis gets made.

Alice deteriorates fast. The chapters go month by month, from September 2003 to September 2005. She manages to teach her course in the spring of 2004, but just barely. The student evaluations describe her as getting lost in the lectures and not responding to questions in a clear manner. I thought of a patient of mine who had been an outstanding school teacher before schizophrenia set in. Her annual reviews were superlative for years, then mixed, and finally described her as utterly disorganized and incoherent.

From the perspective of medical ethics, three aspects of Alice's story stood out for me:

  1. Advance directive to herself. After the diagnosis, Alice decides that she wants her life to end before extreme deterioration sets in. As a scientist, she creates a five question test: What month is it? Where do you live? Where is your office? When is Anne's birthday? How many children do you have? The test directs her to go to a computer file called "Butterfly" if she has trouble answering any of the questions.

    "Butterfly" is a letter to herself that starts: "Dear Alice - You wrote this letter to yourself when you were of sound mind." It describes her pre Alzheimer's life lovingly. Then it directs her to go to the table by her bed and take all the pills in a bottle labelled "for Alice." The letter tells her to "Go now, before you forget. And do not tell anyone what you're doing. Please trust me. Love, Alice Howland."

    Alice does forget, and the story takes another turn. But the issue of suicide is beautifully rendered, and will be discussed in ethics classes and book clubs for years.

  2. Autonomy. Alice's husband John is offered a job he desperately wants to take (chairman of Cancer Biology at Sloan-Kettering in New York). Alice desperately wants to stay in Cambridge. Whose values should prevail?

    The children take Alice's side. John, who loves her and has been a devoted caretaker, asks them to imagine that at the time they would have moved to New York that Alice no longer knows where she is or who any of them are. What then?

    I was torn. Alice's wishes should be respected, but so should John's. In the epilogue we learn that John has taken the Sloan-Kettering job and returns to Cambridge on weekends. The children, with additional help, care for Alice at home. This family had resources to allow for a "win/win" solution. But for other families it would be "either/or."

  3. Intrinsic worth. Lisa Genova writes from the perspective of Alice's experience. As readers, we're inside the world of someone who is progressively confused, disoriented, and emotionally labile. Without any pontificating, Genova shows us that there's a person inside, still trying to make sense of her life, and, when possible, to savour her experience.

    Alice is severely demented, but as the title tells us, she's still Alice!!

Sunday, August 21, 2011

Steve Schroeder on Why We Can't Contain Medical Care Costs

Steve Schroeder, a friend and medical school classmate I've admired since our first day in anatomy class together, recently published his "Personal Reflections on the High Cost of Medical Care" in the Archives of Internal Medicine. Steve knows medical care and the health system inside out. He's a wise person who we should listen to.

Steve reviews a series of cost-increasing areas and efforts to change them that he and his colleagues have studied: unexplained variation in the use of medical services; protechnology payment bias; increased use of medical technologies; escalating hospital expenditures; expansion of the use and numbers of special care units and more intensive care at the end of life; overreliance on expensive medical specialists; medical malpractice; and, patient/family/public expectations.

Steve's conclusion doesn't support optimism about current efforts to "bend the cost curve":
During my professional lifetime I have witnessed a succession of individual cost containment strategies, each theoretically legitimate but each doomed to failure because they were either insufficient as a single intervention or ran up against political opposition to vigorous implementation...Implementing these strategies has been like squeezing a balloon—the desired specific change (eg, lower hospital length of stay) may occur, but compensatory adjustments (eg, growth of hospital intensive care units [ICUs] and outpatient imaging centers) negate overall savings.

...given our past performance, it seems naïve to assume that these latest efforts [electronic medical records, curbing fraud and abuse, paying for performance, and comparative effectiveness research - all part of the Patient Protection and Affordable Care Act] will be any more successful than their predecessors. In the long run, reining in costs will require mobilizing political forces that can withstand the inevitable claims of rationing sure to come from the industries currently benefiting from the 17% of the economy spent on health care, and from consumers who have come to expect unlimited access to what they feel they need. Until there exist sufficient countervailing forces so that a comprehensive, multipronged strategy could be implemented, politicians and health policy experts will continue to embrace tepid and ultimately ineffective solutions that may sound good in theory but will fall short in practice. (emphasis added)
If we needed any more evidence for U.S. paralysis about controlling costs, the politics of Medicare provides it. When Democrats proposed Medicare savings as part of the health reform process, the Republicans trounced them in the 2010 elections. When Paul Ryan proposed Medicare savings, Democrats won the 2011 special election in a traditionally Republican district in New York state.

As I see it, we won't "bend the curve" nationally until (1) the public demands it and (2) we establish an overall national budget for health care. It will take more of a crisis and better political leadership than we've yet experienced for this to happen. As Steve points out, we've been calling the health care cost curve "unsustainable" since he and I finished our training. Since then we've gone from spending 7.5% of GDP on medical care to our current level of 17%.

If Winston Churchill were alive he would remind us of his prediction - that Americans will always do the right thing, but only after we've exhausted all other options. Steve Schroeder suggests that we've not finished exhausting our capacity for wishful thinking yet.

As I wrote the previous sentence, which I intended as the end of this post, I thought of a teaching session during my psychiatry residency. A psychiatrist who specialized in alcohol treatment urged us to approach chronic alcoholics who made recurrent visits to the emergency room with respect. "You'll say the same thing about recovery and AA the first fifty times you see him - but on the fifty first visit he may be ready to hear you."

Our national capacity for denial and well-intentioned pseudo solutions to runaway healthcare costs is like the cognitive distortion folks with alcoholism suffers from. But if "hopeless alcoholics" can bottom out and recover, so can our country, drunk as we are on healthcare fantasies!

Sunday, August 14, 2011

Medical Ethicists as Secular Priests

In Jonathan Moreno's book "Is There an Ethicist in the House?" I came upon these sentences:
...I have been appointed to ad hoc committees on sensitive administrative problems (such as what to do about a resident who was HIV positive but wanted to stay in the program), even though ethical expertise was not much needed. In such cases I have come to see myself as cast into the role of a “secular priest”: even in a pluralistic and multiethnic society someone must sanctify such delicate proceedings. (pages 14-15)
In psychotherapy the phenomenon Moreno is describing would be seen as "transference" - a perception of the therapist that arises from within the patient, not from a realistic perception of the therapist.

In simplest terms, the therapist has two choices to make with regard to transference - use it to advance the goals of treatment, or interpret it as an opportunity for insight.

The ethics consultant must make a similar choice about the "secular priest" transference. If the group the consultant is meeting with has worked hard and reached a thoughtful, well-reasoned conclusion, but then asks - "what do you think?" - the consultant might accept the "secular priest" role and "bless" the group's work, as by responding - "I'm impressed with the thoughtfulness and depth of the discussion - it looks as if we're all comfortable with where we came out."

One reason for accepting the "secular priest" transference this way would be to encourage the participants to see themselves as competent to grapple with challenging ethical questions. Another reason would be to reinforce their commitment to the method(s) of problem solving they had applied.

But suppose the group has reached an overly certain conclusion about an ambiguous question that isn't susceptible to the kind of closure the group settled on. Here the "priest" might choose to "bless" uncertainty: "We all prefer certainty to uncertainty. That's why Harry Truman only wanted advice from one-armed economists - so that he wouldn't hear "on one hand...on the other hand"! But sometimes certainty is an illusion. I suggest that we go back to the drawing board on this..."

I feel squeamish when I'm introduced as an "ethicist." Since questions about what's the right thing to do come up every day of our lives, we're all "ethicists." Sometimes I make that point. But when I feel the situation requires a "secular priest" I bite my tongue and accept the label.

But there's a serious risk in following that path - we might come to believe the attribution ourself!

Tuesday, August 9, 2011

Florida Gun Folly

Florida has forbidden physicians to ask their patients about guns!

Here's what the stunningly asinine law says:
Privacy of Firearm Owners: Provides that licensed practitioner or facility may not record firearm ownership information in patient's medical record; provides exception; provides that unless information is relevant to patient's medical care or safety or safety of others, inquiries regarding firearm ownership or possession should not be made; provides exception for EMTS & paramedics; provides that patient may decline to provide information regarding ownership or possession of firearms; clarifies that physician's authority to choose patients is not altered; prohibits discrimination by licensed practitioners or facilities based solely on patient's firearm ownership or possession; prohibits harassment of patient regarding firearm ownership during examination; prohibits denial of insurance coverage, increased premiums, or other discrimination by insurance companies issuing policies on basis of insured's or applicant's ownership, possession, or storage of firearms or ammunition; clarifies that insurer is not prohibited from considering value of firearms or ammunition in setting personal property premiums; provides for disciplinary action.
Effective Date: June 2, 2011
The Florida House supported the bill 88-30. The Senate supported it 27-10.

I learned about Florida's folly from a New York Times article that explained the origin of the bill:
The measure was introduced in the state Legislature after a pediatrician in Central Florida dismissed a mother from his practice when she angrily refused to answer a routine question about whether she kept a gun in her house. The doctor, Chris Okonkwo, said at the time that he asked so he could offer appropriate safety advice, just as he customarily asks parents if they have a swimming pool and teenagers if they use their cellphones when they drive. He said that he dismissed the mother because he felt they could not establish a trusting doctor-patient relationship.
Dr. Okonkwo is 100% correct that asking about guns in the home is an appropriate part of a responsible medical history. I can't comment on whether "dismissing" the mother from his practice was a reasonable step to take. But whatever one's attitude about the incident, legislating away a piece of medical caretaking is a symptom of the fractured political process in the U.S.

Shame on Florida!

Sunday, August 7, 2011

Self-Tracking, Psychiatric Ethics, and the Changing Patient-Doctor Relationship

A recent New York Times article - "A Dashboard for Your Body" - led me to nose around the web to learn more about developments in what is often called "self-tracking."

It's a fascinating area that is likely to change medical practice, the patient-physician relationship, and even the ways in which we think about ourselves.

Home monitoring devices are already letting clinicians - and perhaps more importantly, family members - keep a virtual eye on the frail elderly and homebound people with chronic illnesses. When our dispersed lives keep family members and close friends from keeping a literal eye on a person in need, devices with internet connectivity allow tracking of vital signs, blood sugar, movement in the living space, eating, and more.

These capacities would have been useful to me, an only child, and my father, in his 80s and legally blind from macular degeneration, during the years he lived in Florida, a thousand miles away. The telephone, and the front desk in the building he lived in, were the tools we had to rely on. Applied wisely, the emerging technologies will make it easier and safer for folks with reduced capacity for self-care to live at home, which is what most prefer.

My search led me to a fascinating article - "The Data-Driven Life" - that describes how some obsessive young technophiles monitor and chart their moods, alertness, uses of time, and much much more. While some of the self-monitoring verges on lunacy, some is potentially transformative.

In medical practice, we do a lot of data collection with our patients (think of the "blood pressure check" or monitoring drug levels). We also spend a lot of time encouraging patients to monitor themselves. The new devices shift the locus of control, power, and knowledge from physicians to patients. In place of coming to the office for a blood pressure check or a blood draw, the new technologies let patients do these themselves. In place of the physician's office notes the patient has his own medical record.

Some years ago a patient of mine with depression (working with her on that was my job) and brittle diabetes, consulted me about problems with her medical team. She had created spread sheets correlating glucose levels, insulin dosage, and other factors. These led her to hypotheses about her regimen. Her team didn't explicitly call her "uppity," but they didn't respond well to her wish to share the driver seat with them. Here my job was to coach her on how to shape a new form of collaboration with her team. Happily, it worked.

Self-tracking may turn out to be especially useful for psychiatry and behavior change. In mental health treatment, patients often relate to clinicians the way our forebears related to oracles. They pose questions like "why did I feel that way?" and "what put that idea into my head?" These are important questions, but seeing the clinician as the all-knowing source of insight is disempowering.

The article on "The Data-Driven Life" identifies implications for future psychiatric practice:
"...a 26-year-old filmmaker named Toli Galanis, [reported] 'I know that immediately after watching a bad movie I am more apt to be negative about my career prospects as a filmmaker'...tracking has made him better able to detect the influence of seemingly trivial circumstances on his mood and decisions.

The idea that our mental life is affected by hidden causes is a mainstay of psychology. Facility in managing the flow of thought and emotion is a sign of happiness and good adjustment. But how is it done? Nearly every therapeutic prescription involves an invitation to notice, to pay attention. Once we have a notion in our sights, we can attack it with an arsenal of tools: cognitive, psychoanalytic, even spiritual. But none of these will tell us if we’ve missed something. You may simply have failed to notice a debilitating habit, a negative correlation, a bad influence."
This next vignette shows how self-tracking can be combined with social support:
"Jon Cousins is a 54-year-old software entrepreneur and former advertising executive who was given a diagnosis in 2007 of bipolar affective disorder. Cousins built a self-tracking system to help manage his feelings, which he called Moodscope; now used by about 1,000 others, Moodscope automatically sends e-mail with mood-tracking scores to a few select friends. 'My life was changed radically,' Cousins told me recently in an e-mail message. 'If I got the odd dip, my friends wanted to know why.' Sometimes, after he records a low score, a friend might simply e-mail: '?' Cousins replies, and that act alone makes him feel better. Moodscope is a blended system in which measurement is supplemented by human sympathy. Self-tracking can sometimes appear narcissistic, but it also allows people to connect with one another in new ways. We leave traces of ourselves with our numbers, like insects putting down a trail of pheromones, and in times of crisis, these signals can lead us to others who share our concerns and care enough to help."
Toli Galanis shows how to use self-tracking as a source of insight to guide self-management. Jon Cousins shows how to use self-tracking to strengthen social support. Developing insight, improving self-management, and strengthening constructive relationships, are central components of virtually every form of psychotherapy. Tools that provide these functions will allow some potential "patients" to be their own therapists, and will enable others to come to therapy having done valuable "pre-work."

When I did my training, our patients' families and friends were often seen as intruders on the therapeutic process. In subsequent decades psychiatry and psychology wised up and learned to work with patients in the context of their social environment - using it when it was constructive and trying to change it when it was not. I foresee a time in the not-too-distant future when we'll be working with their iPads as well!

Tuesday, August 2, 2011

How a Well-Intended FDA Policy on Colchicine is Harming Patients

The road to hell is paved with good intentions.

The FDA has reaffirmed the truth of this aphorism with its policy about Colchicine. Here's the story:

I recently spoke with a friend who has a family member suffering from Familial Mediterranean Fever (FMF), an auto-inflammatory disorder, most commonly seen in eastern Mediterranean populations. The condition is characterized by recurrent painful inflammation of the abdomen, chest and joints, accompanied by fever. FMF is associated with mutation of a gene on chromosome 16 involved with regulating Pyrin, a protein that is part of the inflammatory response. There is no specific test for the disease. Diagnosis is made on the basis of symptoms, family history, and ruling out other conditions.

Since the 1960s, Colchicine, a plant extract first used for treatment of gout two thousand years ago, has been used for treating FMF. As an ancient treatment widely used prior to formation of the FDA, Colchicine did not require FDA approval as a new drug.

In 2009, the FDA granted approval to URL Pharma for Colcrys, its version of Colchicine, based on randomized controlled trials the company conducted. Because Colchicine had never been subjected to the FDA approval process, Colcrys was, in a technical sense, a "new" drug approved for a "new" indication - treatment of gout and FMF - despite the centuries of prior use.

Here's where the well-intended harm comes in. The FDA is allowed to give market exclusivity to a new drug for new indications, as an incentive for pharmaceutical companies to conduct tests and seek FDA approval. In September 2010 the FDA did just that - it ordered all other manufacturers to cease production and marketing of their versions of Colchicine.

Generic Colchicine cost ten cents per dose. Colcrys costs close to five dollars. The company defends the price increase as (a) necessary to support its research and (b) offset for vulnerable patients by a support program for circumstances of hardship.

The FMF community, however, has documented that FMF patients respond differently to different preparations of Colchicine. Apart from the financial impact of a fifty-fold price increase, many who were stable on a previously available form of the drug relapsed on Colcrys.

That's what happened to my friend's family member - a series of severe fevers and inflammatory reactions, leading to emergency room visits and hospitalization.

An editorial in the New England Journal of Medicine argued that URL Pharma's research added no significant benefit to public health of the kind that would justify the reward of market exclusivity. (See here for a vigorous response from URL Pharma.) But apart from the financial hardship market exclusivity creates for patients and insurers, banning the alternative forms of Colchicine injures patients who respond to those forms and not to Colcrys.

My friend is resourceful, and was able to find "contraband" Colchicine. When it was administered, it did the job for his family member.

Encouraging research and true innovation is a social good. But so is preventing recurrences of FMF! A policy that does not allow exceptions to prevent avoidable harms is an unethical policy. Given that alternative forms of Colchicine are no longer manufactured and sold in the U.S., the FDA should make provision for importation from abroad for patients like my friend's family member.

(See here for an excellent article on FMF and the impact of the FDA policy by Dr. Janine Jagger, an epidemiologist who suffers from the condition.)