The Right to Die from Mental Illness

Rachel Aviv has a superb article - "God Knows Where I Am: What should happen when patients reject their diagnosis?" - in the May 30 New Yorker.

The story takes off at a sprint. I dare the reader to put it down. Here's the first paragraph:

On October 5th, 2007, two days after being released from the New Hampshire Hospital in Concord, Linda Bishop discarded all her belongings except for mascara, tweezers, and a pen. For nearly a year she had complained about the restrictions of her psychiatric unit, but her only plan for her release was to remain invisible. She spent two nights in a field she called “Hoboville,” where homeless people slept, and then began wandering around Concord, avoiding the main streets. Wary of spies, she cut through the underbrush behind buildings, walked through gullies beside the roads, and, when she needed to rest, huddled in the bushes. Her life was saved along the way, she later wrote, by two warblers and an owl.

Linda, who was 51, had been a healthy, cheerful, intelligent child. She graduated from college, married in her late 20s, had a daughter, Caitlin, in 1985, but separated from her husband shortly after Caitlin's birth. A psychiatric illness, with paranoid delusions as the main feature, emerged gradually. In 1999 she and Caitlin fled from the persecution Linda feared from the "Chinese Mafia." At first Caitlin shared her mother's fear, but as she said in an interview with Rachel Aviv - "at some point, I just thought to myself, I know better than this." Later that year Linda abandoned Caitlin, explaining in a note that she was going to meet the governor.

For several years Linda was itinerant - often homeless, and occasionally staying with her sister Joan and her parents. After 9/11 Linda went to New York City for a time and patrolled the edge of ground zero, speaking to visitors about the importance of what had happened. In 2004 Caitlin moved back with her mother. She and Linda's sister Joan tried to get Linda to see a psychiatrist, but Linda felt she was perfectly healthy, only suffering from various forms of persecution.

In 2005 Linda was arrested after a motor vehicle accident. The authorities recognized that she was unwell and not competent to stand trial. In 2006 Linda was committed to New Hampshire Hospital. She refused medication and consistently rejected the suggestion that she had an illness. The hospital tried to make Linda's sister Joan her guardian, which would (with Joan's consent as guardian) have allowed them to give Linda antipsychotic medication, but Linda spoke rationally to the judge, who turned down the guardianship proposal.

Shortly thereafter the hospital, which felt hamstrung in their effort to treat Linda, discharged her. Four days after discharge Linda broke into an abandoned farmhouse. The diary she kept details her life from October 9, 2011 until a final note on January 13, 2008, shortly before her death from starvation.

In the house Linda lived on apples she collected. A cloud formation that looked like the number four convinced her that a delusional lover would come to rescue her on December 4. When this didn't happen, Linda gradually resigned herself to whatever God might have in store for her. The heartbreaking quotes from her diary show a sensitive, intelligent, thoroughly deluded person, struggling to deal with imaginary persecutors while starving to death.

Dealing with people like Linda Bishop, who are (a) profoundly ill but (b) do not see themselves as ill, (c) have their own version of reality, and (d) do not meet the typical criteria for involuntary detention of being an acute danger to themselves or others, is (e) the most difficult challenge for psychiatry and an unsolved ethical conundrum for society. Over the years I've spoken with innumerable concerned family members like Linda's daughter Caitlin and sister Joan. They've asked - "why can't you do something - isn't it obvious that X is deeply unwell?" I explained that X's condition was indeed obvious, but that we in the U.S. have chosen liberty over allowing imposition of control, however benevolent the intentions might be.

I see the standoff between liberty values and caretaking values as a dead heat. We've seen how totalitarian societies have abused the power to declare who is insane and in need of external control. In the 1975 film "One Flew Over the Cuckoo's Nest," Jack Nicholson embodies the spirit of rebellious liberty fighting (and losing to) Nurse Ratched, who embodies totalitarian domination. We in the U.S. place a supreme value on individual liberty. Years ago, in a visit with psychiatrists in China, I asked how they would deal with patients like Linda, who are seen as needing medication but refuse to take it. The psychiatrists did not understand the question. In China the local authorities would be told that Linda needed medication, and it would be given to her.

But stories like Linda Bishop's challenge another basic value - our sense of decency. If we saw a drowning child and had the ability to rescue it, it would be unthinkable to ignore the situation. Antipsychotic medication might not have "rescued" Linda, but not being able to try seems comparably unthinkable.

When two values - here, liberty and caring for others - deserve equal respect, it's a mistake to make one the winner, entitled to trump the other. That's what happened with Linda. The hospital felt constrained by privacy laws not to tell Caitlin and Joan that Linda was being discharged. Had I been consulting about Linda, I would have advised a discreet form of civil disobedience, as by saying - "we know how eager you are to leave the hospital, and the judge concluded you don't need a guardian, but we can't in good conscience let you leave without contact with your daughter and sister..." The situation would have been messy - Linda would have refused and insisted on leaving, to which the response would be "we want you to be be able to leave - you're an intelligent and capable person, but our conscience requires us to contact Caitlin and Joan as part of the leaving plan."

In a court trial, the outcome is binary - the defendant is either innocent or guilty. In a situation like Linda's, binary reasoning doesn't work. Linda was profoundly ill, but also impressively capable, which is what led the judge to turn down guardianship.

Death from her illness might have been inevitable, but in the final three months of her life, no one was able to try to rescue Linda from her delusions. The state motto in New Hampshire is "Live Free or Die." As applied to Linda it should be reworded - "Live Free and Die."

The Ethics of Practicing Medicine Part Time

Dr. Karen Sibert, an anesthesiologist in Los Angeles and a mother of four, created a major brouhaha with her tough op ed, in which she inveighed against part-timers in medicine, and told women contemplating medical practice that they "can't have it all." Here's the essence of Dr. Sibert's argument:

Medical education is supported by federal and state tax money both at the university level — student tuition doesn’t come close to covering the schools’ costs — and at the teaching hospitals where residents are trained. So if doctors aren’t making full use of their training, taxpayers are losing their investment. With a growing shortage of doctors in America, we can no longer afford to continue training doctors who don’t spend their careers in the full-time practice of medicine...

Students who aspire to go to medical school should think about the consequences if they decide to work part time or leave clinical medicine. It’s fair to ask them — women especially — to consider the conflicting demands that medicine and parenthood make before they accept (and deny to others) sought-after positions in medical school and residency. They must understand that medical education is a privilege, not an entitlement, and it confers a real moral obligation to serve...

Patients need doctors to take care of them. Medicine shouldn’t be a part-time interest to be set aside if it becomes inconvenient; it deserves to be a life’s work.

Dr. Sibert has taken a lot of abuse for the politically incorrect argument she makes. But she makes five incontestable points: (1) the public makes a substantial investment in medical education, and is entitled to a return on that investment in the form of medical service; (2) with the aging of the baby boom, we anticipate a shortage of physicians, especially in primary care; (3) women make an increasing portion of primary care; (4) women choose part time careers more often then men do; and, (5) medicine should be seen as a calling, not a job.

That said, I believe Dr. Sibert is wrong. She's identified real problems, but the remedy she offers - a moral requirement for full time practice - puts the solutions onto the backs of individual physicians. In a time of epidemic, exhaustive labor is expected and required. But as a solution to chronic system failures, it's the wrong way to go.

There's been lots of writing about how to fix primary care, with the Medical Home being the chief current model. Some physicians have turned to concierge practice, in which they practice full time (as Dr. Sibert calls for) but limit their panel to a small number of patients who can pay the enrollment fee (which undermines the aim of providing wider access).

Over the years I've observed what "part time" practice means to my primary care colleagues. By ordinary work standards, "part time" is VERY "full time." Being part of a team that provides 24/7 access in a coordinated manner can offer excellent service to patients and allows for a sustainable career. I've been a patient in this kind of practice for the past 25 years, so I know first hand that it can work.

(For a rich picture of Dr. Sibert's analysis and reactions to her proposals, here's a link to "On Point," the excellent NPR program.)

Should a Convicted Rapist be Allowed to Practice Medicine?

In 2008, a military court convicted Dr. Mark Seldes, a Flight Surgeon serving in South Korea, for raping a civilian colleague. Dr. Seldes served three years in prison. When he emerged from incarceration he applied for reinstatement of his Florida license. Two weeks ago, the Florida Board of Medicine voted to allow Dr. Seldes to return to medical practice.

Here's the gist of the Health News Florida article about the board's decision:

Board members wrestled with the question of whether a rape conviction precludes a health professional from being able to practice with skill and safety, as Florida statutes require.

The rape victim was not a patient, and thus Seldes's attorney, Kenneth Haber, said the case had nothing to do with the practice of medicine. Haber also said that the rape offense was not violent and that Seldes had previous sexual contact with the victim before the rape. An account of the case in Stars and Stripes said the rape victim was asleep, under medication, at the time the assault occurred.

“He was a man who made a terrible mistake to engage in a relationship with an individual who was not his wife, and has destroyed his career and has certainly brought dire consequences on his marriage,” Haber said.

Seldes's wife sat next to him as the Board went back and forth over what conditions Seldes must meet in order to return to practice.

"Anytime the word rape is used, it rises to a level that gives me great concern, and I'm unwilling to say that this doctor should keep practicing in Florida," said Don Mullins, a consumer member of the board.

"I take a different view," Dr. Zach Zachariah shot back. "In my personal opinion, he has paid his penance."

The board ultimately agreed that Seldes could practice, as long as he works in a government facility while he is under supervision by PRN, a monitoring program for troubled physicians.

He must also complete at least 300 hours of community service within the next three years and give all patients a questionnaire that asks how they had been treated. Seldes requested not to be placed on official "probation," since that might prevent him from being able to get a job with the VA or some other agency, and the board agreed.

If the only question the board had to answer was whether Dr. Seldes would be able to "practice with skill and safety," they could examine him the way candidates for board certification are examined and see if he passed.

But that's not the criterion physician Zach Zachariah and consumer Don Mullins were using.

Zachariah believed that by serving his jail sentence, Seldes had "paid his penance." From the perspective of justice, Zachariah is right. We should help ex-convicts reenter society and become constructive citizens. Jesus's teaching - "let he who is without sin cast the first stone" - deserves universal respect.

Mullins didn't challenge the idea that Seldes had "paid his penance," but he believed it simply didn't make sense to give a rapist a medical license. He was also right.

From the perspective of ethics, predicting Dr. Seldes's ability to perform with "skill and safety" isn't the only question. The Hippocratic oath includes this sentence: "In purity and holiness I will guard my life and my art." Anyone who has committed rape has not guarded his life "in purity and holiness." This is the value Mullins guided himself by, and he was right to do so.

If medical practice were simply a form of body repair, analogous to plumbing, tiling and painting, the Hippocratic precept would not apply. But medical care is built on a relationship and stands and falls with trust. And it isn't just the individual physician who must be trusted - it's the profession itself.

The Florida Board of Medicine made a serious error when it concluded that rape doesn't disqualify a physician from being part of the medical community.

(For a post about the question of whether someone who had been convicted for murder should have been accepted into medical school, see here.)

Dialysis, Immigration, and U.S. Law

Since 2007, I've written a series of posts about safety net care issues - most notably, the problem of providing dialysis to undocumented persons.

This week's New England Journal of Medicine has an article from Baylor in Houston describing in some detail what happens when the undocumented are blocked from having scheduled dialysis and rely on emergency room treatment. It's a classical lose/lose situation. The patients suffer, the taxpayers pay more than would be required for "regular" treatment, and the physicians providing care are distressed by the substandard care they are forced to provide.

The authors are not naive. Here's how they pose the basic problem for clinical care, public policy and ethics:

This issue lies at the intersection of debates over the soaring cost of health care and the need for immigration reform. Do we have an ethical duty to provide the same standard of care for all sick patients within our borders? Or would mandating the provision of health care (and of maintenance-dialysis treatments) create an incentive for illegal immigration and worsen the current situation?

There's no easy answer. But we're better off for facing the problem squarely. Thanks to Drs. Rajeev Raghavan and Ricardo Nuila for helping us do that!

Anthony Weiner and Medical Ethics

Representative Anthony Weiner's tearful confession of having (a) sent lewd photos to women over the internet and then (b) lied recurrently after the first photo emerged, is the news of the day. (For overseas readers and the rare U.S. reader who do not follow U.S. gossip, here's a link to a New York Times article and editorial on the story.)

Weiner's ridiculous internet photos and messages were immature. He clearly violated the House ethics rule that representatives should conduct themselves “at all times in a manner that shall reflect creditably on the House.” And his baldface lies were reprehensible. He says, however, that he will not resign.

For two reasons, I hope Weiner can tough it out.

First, U.S. political process has a deeply hypocritical double standard. When Sarah Palin and Newt Gingrich lie about "death panels" in the health reform law, they cause profound public harm, but suffer no disgrace for the damage their mendacity causes. But when Elliot Spitzer consorts with a prostitute, and Anthony Weiner struts his physique on Twitter and Facebook, we are shocked, shocked, and pillory the perpetrators.

Spitzer and Weiner have simply made fools of themselves. Palin and Gingrich have caused widespread harm. If we want to get serious about destructive public conduct, let's address the what's truly harmful!

Second, Weiner's press conference confession is a refreshing antidote to the more characteristic political stance of evading responsibility and blaming others, as in Donald Rumsfeld's lame "stuff happens" response to the fiasco of looting we allowed to go on in Iraq. Weiner spells out the embarassing behavior he carried out on internet, and clearly acknowledges his lies.

In medicine we often care for people who have done wrong. In my psychiatry residency I was startled when one of our teachers (using an old fashioned word) asked a patient who had treated others very badly - "how does it feel to be a bum?" The question led to a serious exchange. The patient had indeed acted in a reprehensible manner. The challenge he faced was whether he could make amends, learn from his experience, and become a decent human being. That's what our teacher suggested we try to help him with. The phrase "tough love" wasn't in use then, but that's what he was recommending.

AA's 12 steps apply tough love to the effort to recover from alcoholism. The AA member is asked to make "a searching and fearless moral inventory" (step 4), to make "a list of all persons we had harmed, and became willing to make amends to them all" (step 8), and then to make "direct amends to such people wherever possible, except when to do so would injure them or others" (step 9).

If Weiner follows the wisdom of these steps he could improve our political dialogue by (a) continuing to take full responsibility for his actions and (b) working to promote higher standards of responsibility-taking in our culture. If he can do this he will be helping us improve our capacity to follow Gandhi's teaching, that we should hate the sin but love the sinner.

That's a capacity that health professionals must develop. Our patients need to know that we love them even as we confront the destructive behaviors they may manifest.

I'll be back soon

I haven't done a post for three weeks - the longest postless interlude since I started the blog 3 1/2 years ago. It's due to a combination of travel and a spate of more work than usual. I'm going off again for a week - a family trip to Bermuda and then a meeting in Washington DC. There's always lots to talk about in relation to health system ethics. I'll be back in June.

Is Paul Krugman Right that Patients are not Consumers?

President Harry Truman only sought advice from one-armed economists. He didn't want any of this "on the one hand/on the other hand" stuff. But, unfortunately, that's how I have to answer the question about Paul Krugman's much noted recent column "Patients are Not Consumers."

Here's the essence of Krugman's argument:

Here’s my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as “consumers”? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car — and their only complaint is that it isn’t commercial enough...

Medical care, after all, is an area in which crucial decisions — life and death decisions — must be made. Yet making such decisions intelligently requires a vast amount of specialized knowledge. Furthermore, those decisions often must be made under conditions in which the patient is incapacitated, under severe stress, or needs action immediately, with no time for discussion, let alone comparison shopping.

That’s why we have medical ethics. That’s why doctors have traditionally both been viewed as something special and been expected to behave according to higher standards than the average professional. There’s a reason we have TV series about heroic doctors, while we don’t have TV series about heroic middle managers...

The idea that all this can be reduced to money — that doctors are just “providers” selling services to health care “consumers” — is, well, sickening. And the prevalence of this kind of language is a sign that something has gone very wrong not just with this discussion, but with our society’s values.

I've never met a doctor or nurse for whom the concept of "consumer" felt right as a way of thinking about their patients. Medical care is a calling, and the call isn't to set up shop to hawk consumer goods. Portraying the doctor/patient relationship as one between provider and consumer is a grotesque parody of the moral core of health professionalism. The comments on Krugman's column overwhelmingly agreed that what a patients expect from doctors and nurses isn't a commercial relationship governed by caveat emptor.

A good doctor loves his patients (in the right way). Patients deserve to feel this kind of regard. The language of "consumer" and "provider" completely leaves out the soul of medicine.

But it's not that simple. In 1999 my friend Julia Neuberger argued that we should chuck out the word "patient" and replace it with a term that better conveys equality, collaboration, and active participation. She favored "user" over "consumer." In the same spirit, my psychologist colleagues use the word "client." Though calling my patients "consumers" or "users of care" sticks in my throat, I completely agree with Julia's view of the clinical relationship. It's clear that while for me, and for the clinicians I respect most, "patient" connotes equality, collaboration, and activism, for many folks "patient" means "passive" and "subservient."

Insofar as the concept of "consumer" is necessary to convey that clinicians want, and need, patients to think for themselves and take an active role in the clinical transaction, then the people we clinicians care for should be thought of as "consumers" as well as "patients"!

The Manners Mother Taught Us

Theresa Brown, an oncology nurse in Pittsburgh, didn't connect her column in today's New York Times to Mother's Day. But I did.

Ms. Brown tells this story about a recent event at her hospital:

It was morning rounds in the hospital and the entire medical team stood in the patient’s room. A test result was late, and the patient, a friendly, middle-aged man, jokingly asked his doctor whom he should yell at.

Turning and pointing at the patient’s nurse, the doctor replied, “If you want to scream at anyone, scream at her.”

Ms. Brown was the nurse, and the column, written with the doctor's permission, is her response.

Bad interpersonal behavior creates patient safety risks. Nurses, and young physicians, stop raising questions or sounding alerts. But Ms. Brown observes that the most corrosive form of bullying isn't the loud tantrum - it's "passive, like not answering pages or phone calls, and tends toward the subtle: condescension rather than outright abuse, and aggressive or sarcastic remarks rather than straightforward insults."

I have the privilege of teaching medical ethics to first year Harvard Medical students. We discuss the deep moral conundrums in which cherished values compete and clash. These are the "capital E" ethical issues that make the evening news. But the "small e" ethics that Theresa Brown writes about are more important for every day patient care.

In the feedback I received from patient surveys over the years I was impressed with how many of the comments focused on behaviors that ultimately derived from the lessons in "good manners" that my mother (and father) taught me as a young child. I remember their saying "if you make an appointment, don't be late." There was no occasion to teach about returning phone calls promptly, but when the mother of my best friend in fourth grade died, they insisted that I call him. And the one time I remember my father spanking me (with a hairbrush, no less!) was after I'd treated someone doing housecleaning for the family with disrespect.

Albert Schweitzer taught that "Example is not the main thing in influencing others. It is the only thing." Ms. Brown follows Schweitzer's lead. The milieu of hospitals and other health organizations will improve when "alongside uniform, well-enforced rules, doctors themselves set a new tone in the hospital corridors, policing their colleagues and letting new doctors know what kind of behavior is expected of them."

This isn't the ethics taught in medical ethics classes. It's closer to the good manners we were taught, or should have been taught, as kids. If we're lucky, the behaviors have become second nature, automatic. But the right kind of example among our teachers and peers can reinforce or reduce our propensity to treat patients and colleagues with ordinary human decency.

I'm sorry my mother isn't alive so that I could thank her for lessons I often groused about as a kid. Insofar as I imbibed the practice of considerate behavior, it's served me as well as any of the fancier lessons I learned later on!