Thursday, April 28, 2016

Robber Baron Capitalism victimizes Mother Theresa

Yesterday the Senate Special Committee on Aging held a feel-good hearing at which the Senators excoriated Michael Pearson, the soon-to-be ex-CEO of Valeant Pharmaceuticals, for rapacious drug pricing, and hedge fund manager William Ackman for making Valeant a darling of the Wall Street world.

It's a valuable truth about organizational life that every system is perfectly designed to achieve the results it actually produces. The two articles cited in the previous paragraph and a third about "The Complex Math Behind Spiraling Prescription Drug Prices" provide insight about how the current U.S. system inevitably produces stratospheric drug prices. Here's how it works:

  1. The first step involves rewarding CEOs lavishly for short-term profits. It's important not to look too deeply into how the profits are made, as long as the method is - or appears to be - legal. My my previous post  about Michael Pearson's compensation shows how this first step towards moral corruption can best be carried out.
  2. One variant of step two involves identifying a valuable old drug that is priced affordably. Make sure it has no competitors. Then, buy it and jack up the price by hundreds of percents. That's the route Michael Pearson at Valeant and Martin Shkreli at Turing Pharmaceuticals took.
  3. As an alternative, identify a serious medical condition for which there is no effective treatment. Develop a new, better approach. This is the path of discovery and developing genuine new value. Up to the the point of setting a price, this step is morally admirable.
  4. Recognizing that (a) we control a vital component for human health, and (b) health organizations are committed to human health, (c) set a stratospheric price, since (d) we have the health system over a barrel. 
  5. If whoever is purchasing our stratospherically-priced drug protests, accuse them of (a) rationing care, (b) stifling innovation, or best (c) both.
This is how the fine-tuned medical-industrial complex facilitates runaway drug costs. Historically, providers have been governed by Mother Theresa's ethics - do what is needed for human health no matter what it costs. The Michael Pearsons and Martin Shkrelis may be acting within the law, but they're not acting within the ethics of care. Unlike Pearson and Shkreli, who simply recycle established products at new prices, pharmaceutical companies that develop treatments that create new possibilities for human healing are participating in the health care calling. But when they charge astronomical prices, they're joining with the Pearsons and Shkrelis in robber baron conduct.

Hard bargaining helps, but it isn't likely to be enough to lead to fair pricing. My guess is that some form of regulation or other change in law is likely to be required. How to do it is beyond my pay grade. But happily, we in Massachusetts elected Elizabeth Warren as Senator, and consumer protection is her specialty. I'm going to send this post to her office with a simple message: PLEASE HELP!

Sunday, April 17, 2016

Bringing the Best of Religion into Medicine

Yesterday I went to the funeral of my older daughter-in-law's mother. She was a much-loved person who was very active in her church. The beautiful Episcopal ceremony evoked her spirit with love and humor. The minister conducted the service in a spirit of inclusiveness and solidarity. The words from John 14:2 - "In my Father's house are many mansions" - were interpreted as reflecting love of all humanity, not as a promise to believers alone.

For me the service brought out what is best in religion. Three years ago I wrote that all liberal (i.e., inclusive) religions are comparably true and good and all fundamentalist (i.e., exclusive) religions are comparably false and bad. I continue to hold that view.

Even though I'm thoroughly in the secular humanist fold, over the years of medical practice I often found that religious language felt truer to the aims of clinical care than purely secular modes of expression. Here are four examples:

"Omniscient being." In all areas of medicine we often bump up against uncertainty. At times that my patient and I wished we knew what to do or what to expect, I might say something like "if we had access to an omniscient being, we wouldn't have to wonder about XYZ..." The concept of a god evoked our wish for the assistance that a benevolent god would give us, and at the same time, acknowledged our limitations.

"Blessing." Historically, to be "blessed" meant having god's favor. Our perfunctory"God Bless You" when someone sneezes goes back to pre-antibiotic days when sneezing might presage pneumonia and pneumonia could mean a rapid death. Even though I don't believe in a god who might intervene, comments like "let's hope that you will be blessed with better health" felt like a stronger expression of hope and possibility than they would with purely secular phraseology.

"Prayer." Many years ago, a patient of mine who conducted himself courageously despite significant impairment from chronic schizophrenia, ended an appointment by asking me to remember him in my prayers. Without thought or hesitation, I said I would. I took my patient to be requesting that I care about him deeply and feel for him  what I've written about as "the right kind of love between doctors and patients." Since I did feel that way about him I felt I was speaking truth in committing myself to remembering him in my prayers.

"Calling." In its original meaning, a "calling" came from god in the literal form of god's voice. The clinicians I respect most among physicians, nurses, social workers, and other health professionals ("profession" is another term that comes from a religious context) all think of health care as a "calling." Many religious clinicians understand the calling to health care as a call from god - literally, to do "god's work." But when I've used the concept of "calling" with first year medical students in the ethics class, it gets a mixed reception. For some it rings true. They feel "called" to a sacred profession, whether they're believers or not. But others have chided me for being too moralistic. For them, medicine is a "job." I don't try to talk them out of this view, but I do suggest that when they're with patients at the bedside, the "job" may be transformed into a "calling."

When my mother experienced the cerebral hemorrhage from which she died a few days later, the ambulance took her to a Catholic hospital. I was impressed and comforted by the spiritual wisdom of the care she and her small family (me and my father) received, especially from the nurses. And when I visited the Swami Vivekananda Hospital in Saragur, India, in 2009, I learned that twice a week they conducted a non-denominational prayer service for patients and staff. Religious language and "liberal" religious practice make superb partners for the enterprise of health care!

Friday, April 8, 2016

Euthanasia and the Slippery Slope

Some of the arguments for and against what is now being called "Physician Assisted Death" (PAD)  rest on core ethical beliefs and are intractable. But the "slippery slope" argument that legalizing PAD in limited and arguably ethically acceptable circumstances, as with the Oregon "Death with Dignity Act," will inevitably lead to ethically unacceptable actions, is testable.

PAD became legal in Oregon in 1997. In the intervening 19 years there has been no significant public pressure to legalize PAD for persons who are not terminally ill, and no evidence suggesting that PAD is victimizing vulnerable populations such as the poor, ethnic minorities, or frail elderly. PAD is a relatively infrequent event, accounting for 0.4% of deaths in 2015. Further, PAD has not undermined good end-of-life-care, another slippery slope fear. In actual fact, Oregon is among the national leaders in providing good palliative and hospice care.

But although Oregon proves that the slippery slope argument against laws modeled on the Death with Dignity Act is invalid, reports from Belgium and the Netherlands are worrisome. In those countries PAD and active euthanasia occur at 10 times the rate in Oregon. What I find most disturbing is the way Belgium and the Netherlands have extended the practice beyond the terminally ill to include people described as "tired of living" and to others suffering from otherwise non-terminal psychiatric ailments.

If you're interested in PAD and the potential validity of the slippery slope concern, please read Rachel Aviv's brilliant New Yorker article from last year - "The Death Treatment," in which she tells the story of Godelieva De Troyer:

Godelieva De Troyer

At 64, De Troyer had recently been abandoned by a boyfriend and was feeling distant from her son. She sought out Dr. Wim Distelmans, an oncologist and professor of palliative medicine (!). Distelmans, who is apparently revered in Belgium for his support for euthanasia, cuts a handsome and charismatic figure:

Wim Distelmans

De Troyer had lived a roller coaster life. Her emotional states ranged from ebullience when her relationships were fulfilling to painful despair when her important attachments were disrupted. But given the clear history of relatedness during her adult life, I would wager that virtually all experienced psychiatrists in the U.S. would have seen De Troyer's wish for death when she met with Distelmans as a transient symptom, not an autonomous choice.

Rachel Aviv was able to interview Distelmans. Here's a crucial paragraph from her article:
Distelmans told me that he had no doubts about the way he handled Godelieva’s case. He explained that she was “a very nice person, a very warm person,” and that she had “wanted to do one decent thing in her life, and that is to die in a decent way, because the rest of her life was such a horrible mess.” When I asked if he worried about transference—perhaps she had idolized him or depended too much on his opinion—he laughed and said, “I’ve never met a patient who is willing to die to please someone else.”
I'd make the further wager that most experienced therapists in the U.S. would share Aviv's speculation that a "transference" was at work. And Distelmans's statement that no one is willing to die to please someone else is sheer nonsense. If we needed more proof than "psychological autopsies" conducted after suicides provide, just think of the suicide bombers who blow themselves up with heroic martyrdom as one of their motives.

Washington (2009), Vermont (2009) and California (2016), the three additional states that have passed "Death with Dignity" laws, all follow Oregon by limiting the procedure to patients with terminal conditions from which they are expected to die within 6 months. The slippery slope argument holds no water against that approach. But advocates for similar laws in other states should recognize that there appear to be real slippery slopes across the Atlantic, and must explain clearly the difference between Belgium and the Netherlands and what Oregon, Washington, Vermont and California have done.

(I've never met Rachel Aviv, but I've written about her superb work here and here.)