Wednesday, February 10, 2016

"Facilitated Communication" and the Sentencing of Professor Anna Stubblefield

Anna Stubblefield, former chair of philosophy at Rutgers, has been sentenced to 12 years in prison for rape of D.J., a 31 year old man with severe cerebral palsy who she insisted was mentally competent to consent to a sexual relationship. His family, the state, and the jury, saw him as severely disabled in cognition as well as motor capacity and incapable of a consensual relationship. (See here for my October post on the situation. Make sure to read the thoughtful comments as well!)

Professor Stubblefield "communicated" with D.J. by "facilitated communication," also called "supported typing," a technique in which the otherwise non-communicative person's hand is used to "guide" the facilitator at a keyboard. Multiple professional organizations, most recently the International Society for Augmentative and Alternative Communication, have studied the technique. The distinguished international review committee didn't mince its words: "...messages generated through Facilitated Communication are authored by the facilitators rather than the individuals with disabilities. Hence, Facilitated Communication is a technique that has no validity." (See here for the systematic review and here for the Society's formal position statement). Other groups, including the American Association on Mental Retardation, American Psychiatric Association, and the American Academy of Pediatrics, concur.

But facts don't change the position of true believers. Sadly, the sense of being beleaguered has led advocates to circle their wagons and advocate more vehemently. Professor Stubblefield's parents were educators with a passionate commitment to facilitated communication. They brought her up to have the same convictions, as she is doing with her own 16 year old daughter. People with severe disabilities like D.J. are often stigmatized and warehoused. Bringing out hidden potential, as dramatized so well by Daniel Day-Lewis in My Left Foot, is a noble aim. 

The pseudo-science of facilitated communication nests with concerns about social justice. Advocates feel that a misguided society is thwarting the efforts of (a) families to get help for their disabled children, (b) facilitated communication practitioners to carry out their belief that they can relieve suffering, and (c) disabled persons seeking to realize their potential. That's a powerful mix!

I see Professsor Stubblefield as a tragic victim of this witches' brew of passionate belief in a view that we all wish were true, but, alas, isn't. From the perspective of ethics we should ask - what is the right societal response? Here are what I see as the key considerations:
  1. Facilitated communication has been proven to be a false theory.
  2. It still has committed adherents who argue for the theory on the basis of anecdotes.
  3. The anecdotes don't change the fact that the theory has been disproved.
  4. Anna Stubblefield passionately believed (and, from what we know, still believes) that facilitated communication could rescue otherwise hopelessly disabled people.
  5. She is not a sexual predator. No one suggested a pattern of exploitation on her part. (Unlike my own profession, where there have been psychiatrists who recurrently exploited patients for sex.)
  6. She fell in love with D.J.
  7. She firmly believed that D.J. loved her in return and was mentally competent to consent to a sexual relationship.
  8. As I said in my previous post, even if D.J were competent, he was, in effect, Professor Stubblefield's patient, and having sex with him was unethical..
  9. The jury found her guilty of initiating a sexual relationship with a person who could not consent. Despite her belief that the relationship was consensual, it must be seen as rape.
Professor Stubblefield does not appear to be a risk to society the way a serial rapist is. She believed she was doing something with D.J., not to him. But although a female professor of philosophy who has set out to help a severely disabled person does not fit our ordinary conception of a rapist, the fact that you love the person you are having non-consensual sex with does not change the fact that the action is rape.

For that reason, I see some time in jail as an appropriate societal response. But twelve years is excessive. From the perspective of ethics, a short incarceration, to make clear that society does not tolerate rape, even if false beliefs led the perpetrator to misperceive the rape as a positive, caring action. Jail would be followed by an extended period of probation that included prohibition of any and all practice or advocacy of "facilitated communication." In addition, Professor Stubblefield should make a full apology to D.J.'s family. To me that seems like the  right outcome for this tragic situation.

Monday, February 8, 2016

Physicians as "Counsellors"

One of my favorite moments in music is the spectacular chorus in Handel's Messiah:
For unto us a child is born, unto us a son is given,
and the government shall be upon His shoulder;
and His name shall be called Wonderful, Counsellor,
the mighty God, the Everlasting Father, the Prince of Peace.
Within the chorus, I find the word "Counsellor" especially moving. An article I recently read in JAMA - "The Physician's Counsel" - helps me understand what moves me so powerfully.

The author, Donald Misch, tells how at the end of his mother's life, he was the decision-maker for whether to prolong treatment or "pull the plug." He felt an intense need to talk with his physician, who was also a friend, about the decision:
 I did not need another physician to assess the situation intellectually and medically, and yet it was clear that my [physician] friend’s words were critically important to me. I needed a physician’s counsel to let my mother die. This was true even though I was, and am, a physician, dually trained  in internal medicine and psychiatry, and I had on many other occasions helped other families struggle with similar decisions. I needed a physician—not simply other family members or friends or advisors (although all of these were helpful as well)—to tell me that under the particular circumstances of my mother’s situation, my conclusions were reasonable. Because all decisions about significant others in one’s life are laden with emotion, conscious and unconscious meaning, and history, I needed to be sure that my motives for making this irrevocable and lethal decision were not contaminated by my longstanding conflictual relationship with mother. I needed a physician to assure me that my judgment was consistent with my mother’s wishes and her best interests.
I've often written about health care as a "calling." (For examples, see here, here , here, and here.) I think the need Dr. Misch felt reflects the patient's side of what "calling" means. When we're feeling vulnerable we long for a "Counsellor." In Christian faith, it's "the mighty God, the Everlasting Father, the Prince of Peace." In health care it's the caretaker who we trust and rely on.

Many years ago a religious couple from another state came to see me. A friend who they trusted had been my patient, and gave them my name. Their daughter was involved with a man who was less religiously observant than they were. They asked me - should they cut off contact with their daughter?

I was startled. This wasn't the kind of issue I was accustomed to dealing with in my psychiatric practice. I asked why they didn't consult their pastor at home. They said, "he's new, and we don't respect him." After a moment of internal debate I decided to accept the "Counsellor" role they had given me. Was their daughter's potential spouse an honest seeming person? Yes. Was he a drug user? No. Did he treat their daughter well? Yes. Was she happy? Yes. After some more discussion I gave them my counsel. They should not sever ties with their daughter. The family relationship was more important than their views of proper religious practice.

The woman in the couple jumped up. "See - that's what I told you!" Her husband looked a bit crestfallen, but accepted my advice. I never saw them again, but 10-15 years later I heard indirectly that their daughter was happily married to the man I'd been told about.

Dr. Misch's article reminded me of another - Dr. Franz Ingelfinger's 1977 medical ethics lecture, unfortunately titled "Arrogance." Dr. Ingelfinger, editor of the New England Journal of Medicine and one of the world's experts on esophageal cancer, developed esophageal cancer. He tells us that with regard to the difficult question of whether to undergo chemotherapy and radiation after surgery:
I received from physician friends throughout the country a barrage of well-intentioned but contradictory advice. As a result, not only I, but my wife, my son and daughter-in-law (both doctors), and other family members became increasingly confused and emotionally distraught. wise physician friend said, "What you need is a doctor." He was telling me to forget the information I already had and the information I was receiving from many quarters, and to seek instead a person who would dominate, who would tell me what to do, who would in a paternalistic manner assume responsibility for my care. When that excellent advice was followed, my family and I sensed immediate and immense relief."
Medical practice has its mundane moments, but at it's best it embodies what the chorus in the Messiah is singing about. What a privilege it is to be allowed to be a "Counsellor"!


Saturday, February 6, 2016

Curing Depression with Light: Let the Sun Shine in

In an elegant Canadian study, light outdid Prozac in a head-to-head comparison as treatment for nonseasonal major depression.

The study design is fascinating. Patients were randomly assigned to one of four groups: (1) light and a placebo pill; (2) Prozac and placebo light (an ion emitter modified to hum softly but emit no ions); (3) light and Prozac; and, (4) placebo light and a placebo pill.

The informed consent process involved deception. Subjects were told that the researchers were comparing light to ion treatment, and that half of the devices would be inactive. They were not told that all of the supposed ion emitters were inactive and all of the light units were active. The ethical rationale for allowing deception was that (a) the study goals could not otherwise be pursued, (b) the study had significant scientific and clinical merit, and (c) the deception posed no significant risks to the subjects.

The most effective monotherapy was light. Prozac alone was barely better than placebo. Light combined with Prozac was the most effective arm of the study, but not by much.

Light has been recognized as an effective treatment for seasonal affective disorder (SAD), but has not been rigorously evaluated for non-seasonal depression. If I were still in practice and saw a non-suicidal depressed patient who preferred not to use medication, I would recommend light treatment as part of our initial approach, combined with whatever form of psychotherapy fit the patient best.

We're a pill-happy society, and psychiatry, alas, has tilted away from non-pharmacological approaches to care. If Cazorp (Prozac spelled backwards) were a new pill that beat Prozac as decisively as light did in the Canadian study, the Cazorp company's stock would go through the roof. If further research confirms the Canadian findings, light should become a standard part of the initial response to depression. But although there's some financial opportunity for device manufacturers, inexpensive do-it-yourself light boxes are relatively easy to construct, so we're not likely to see a light boom analogous to the dominant pill boom.

Money talks, so pills thrive. Light cures, but produces little financial (as opposed to clinical) profit. Ergo, pill-popping wins hands down.

Thursday, February 4, 2016

Accountable Health Communities and Primary Care

Last month CMS announced an "Accountable Health Communities" initiative:
The Accountable Health Communities (AHC) model addresses a critical gap between clinical care and community services in the current health care delivery system by testing whether systematically identifying and addressing the health-related social needs of beneficiaries’ impacts total health care costs, improves health, and quality of care. In taking this approach, the Accountable Health Communities model supports the Center for Medicare & Medicaid Service’s (CMS) “better care, smarter spending, and healthier people” approach to improving health care delivery.
I think the initiative is a very big deal!

The US health system is badly out of whack. 95% of the trillion dollars we spend on health care each year goes for acute medical treatment, but 60% or the preventable deaths are caused by "social" factors. In the brief appointments that are too characteristic of medical practice, it's difficult for physicians to learn about a patient's social circumstances. And I know from the brilliant and idealistic primary care residents I teach that they feel their training has not prepared them to know what to do in response to the stories they hear from their patients.

I believe the disconnect between what typical medical care involves and the existential circumstances of our patients' lives is a major contributor to the high rate of "burnout" and "demoralization" among physicians. When physicians and patients feel deeply connected, medical interventions are more effective and both parties experience intrinsic satisfaction. Sadly for all, this connection often does not occur.

Dr. Heidi Behforouz, a colleague at Harvard Medical School, has written usefully about "rethinking the social history." Here's her diagnosis of the problem young physicians like those I have the privilege of working with encounter:
Physicians often see patients with complex social situations as a burden — requiring extra work that is neither reimbursable nor central to our core clinical expertise. Unfortunately, we inculcate these attitudes in trainees, implicitly and explicitly, perhaps because  of our discomfort with hearing difficult stories or our sense of powerlessness or incompetence in addressing these root problems. Whereas biologic pathology may present specific targets for intervention, social or structural pathology is difficult to treat.
 The CMS "Accountable Health Communities" initiative is designed to explore organizational models that foster a stronger connection between the "medical" and "social" aspects of our patients' lives. Strong links to community resources, new skills for understanding social contexts, and improved tools for recording social information in a useful form, will all be required.

When health organizations move from being strictly "medical" to becoming "health communities," we'll have created settings in which medical, nursing, and other health professional students can learn how to do what William Osler urged a century ago: "the good physician treats the disease; the great physician treats the patient who has the disease."

Tuesday, February 2, 2016

Dreams of the Dying

A fascinating New York Times article about the dreams of people who are close to death brought to my attention a study of end of life dreams and visions carried out by clinicians at a Cheektowaga (a suburb of Buffalo) hospice and published in the Journal of Palliative Medicine.

The researchers systematically followed 66 hospice patients to ask them on a daily basis about dreams and visions. 87% reported having these experiences. The majority were comforting. The brief summaries cited in the article are moving.
28 days before his death, Barry (age 88) dreamt of driving somewhere unknown and was comforted by hearing his mother say, ‘‘It’s all right. You’re a good boy. I love you.’’ 
4 days before his death, Roger (age 73) dreamt about his best friend from childhood and saw him running out of the house with his glove and bat while laughing. They had shared a love of baseball throughout life. 
37 days before her death, Barbara (age 52) dreamt of her deceased father and brothers, hugging her and ‘‘welcoming her to the dead.’’ They seemed to be preparing to go somewhere but ‘‘they haven’t said’’ where.
The researchers conclude:
The results of this study suggest that a person’s fear of death often diminishes as a direct result of ELDVs, and what arises is a new insight into mortality. The emotional impact is so frequently positive, comforting, and paradoxically life affirming; the individual is physically dying, but their emotional and spiritual identity remains present as manifested by dreams/visions. In this way, ELDVs do not deny death, but in fact, transcend the dying experience, and present a therapeutic opportunity for clinicians to assist patients and their families in the transition from life to death, thereby providing comfort and closure.
But the researchers tell us that despite the commonness and value of such experiences, patients, families, and clinicians report being reluctant to openly discuss end of life dreams and visions for fear of ridicule and doubts concerning medical legitimacy. This is the downside of our hyper scientific approach to health care. Apart from the constraints of time that plague medical practice, young physicians I have worked with report that although dealing with spiritual/existential matters like end of life dreams and visions seems enormously valuable for both patients and physicians, they don't feel  they have developed the skills and depth of understanding that is required.

Years ago, when I taught medical students at the Howard University clinic in Washington, DC, many of our patients came from the rural South. I was impressed with how often they reported visions of a dead family member. As we listened to these experiences, it was clear that the patients were not hallucinating or experiencing psychosis. The exchanges they reported - like the dreams of the patients near death - were meaningful to them, and to us. And towards the end of his life, when I was visiting my three-times widowed father in Florida, he told me that he was expecting a "visit" from his own father, who came to him in dreams every year or two, in a way that gave comfort and joy.

The study I've summarized is potentially very influential. By making such personal experiences the focus of scientific study they bring what might be seen as solely the spiritual matters for pastors to deal with or psychopathology to be treated by psychiatrists within the orbit of what clinicians can listen to, work with, and learn from.

Friday, January 29, 2016

Cooperation vs Competition in Health Care

I've long admired the Cleveland Clinic, so I hope this paragraph from a New York Times article on how drug shortages force rationing decisions, turns out to be incorrect:
The Cleveland Clinic has an advanced compounding room where workers swaddled in disposable gowns, bouffant caps and blue gloves mix up remedies from raw ingredients. During a shortage of papaverine, a drug used for surgery on blood vessels, the clinic produced its own version. When other hospitals began asking about it, Dr. Snyder said he had to tell them, “It’s a franchised recipe we can’t give out.”
 If "franchised recipe" means the Clinic wants to keep its way of producing papaverine secret, it's hard to see how that policy could be ethically justifiable.When a clinician or institution has figured out how to help patients in a better way, the new approach should be shared with others. The overarching goal of the health system is improved health for the entire population. We encourage competition to stimulate local improvements, but once achieved, those improvements must be shared. Competition in health care is justified when it serves population health.

The Cleveland Clinic already has a reputation for clinical excellence. Sharing its "franchised recipe" will enhance the respect the Clinic receives. As such, sharing the recipe would be both good ethics and good strategy. Truly a win/win outcome.

Thursday, January 28, 2016

Medical Scribes and the Patient-Doctor Relationship

I'd heard and read about the practice of bringing "scribes" into the exam room to allow the doctor to relate to the patient rather than to the keyboard. But I hadn't experienced the phenomenon until last week. 

Prior to my appointment I was told that the physician I was about to see (my primary care physician has been ill, and I was seeing a physician I'd never seen before) worked with a scribe. Would that be OK with me? It was. The medical issue involved my big toe and foot, and didn't feel enormously personal.

The photo (it isn't me) shows the scribe interacting with the laptop but clearly in the patient's line of vision. At my appointment, when I looked at the scribe he was looking at me - we made eye contact. He said nothing verbally or via facial expression, but was clearly a third person in the office. Since the focus of the examination was my foot - not a very personal exposure - and the questions weren't about intimate matters, I didn't mind having a non-clinical stranger in the room. But if either of those conditions were different, I would not have wanted the scribe to be present.

The impetus for using scribes is directly related to the electronic health record and the incentives from Medicare (and others) for using the EHR. If physicians are doing the entry, it's either during the appointment or after. Entering the notes during the appointment is more efficient, but leads to the common patient complaint that "the doctor is treating the computer instead of me." But entering the notes after the appointment requires additional time that is not reimbursed and makes the working day longer. 

During my years of psychiatric practice I regarded myself as a devoted clinician. I loved my patients. But from residency on I generally made my notes during the appointment. I found that if I waited until the end of the day I'd forgotten things, and after a busy day of appointments I felt burdened by the additional time requirement. I didn't resent staying later to see a patient with an urgent problem, but I did resent writing notes rather than heading home to be with my family.

I can't believe that voice recognition technology can't make it possible for doctors to dictate notes while seeing patients. It could be done in a way that helped the patient to understand our thinking. From residency on I always wrote my notes with the assumption that the patient would read them. The discipline this imposed was useful. As an example, it helped me in relating to people with paranoia. I didn't write "Mr. Jones is paranoid and delusional," but rather "Mr. Jones believes extra-terrestrials have implanted a chip in his brain. He understands that I do not share this view. We discussed why I believe taking anti-psychotic medication would help him in his life..." 

I found that people with paranoia appreciated that I recognized the possibility that (in this example) extra-terrestrials might be causing mischief, but that I found this extremely unlikely. We could frame using medication as a hypothesis - "whether or not there is a chip in your brain, I believe that you will sleep better and be less afraid after a few weeks..." rather than as the equivalent of "you're crazy and I'm sane so you should do what I say..."

Writing notes with the patient in the office allowed for discussion of what should be said. With someone I'll call Mr. Jones, it had taken quite a bit of time to elicit a clear picture of how much alcohol he used and how alcohol might be affecting his mood and his physical health. I explained why I thought it was important for his primary care physician to know about his alcohol use. We sat together in front of the terminal to compose my note. Mr. Jones baulked at the word "alcoholism," but accepted "alcohol problem." This wasn't just a piece of collaborative writing and editing - it was an integral part of the treatment process.

It seems to me that the burgeoning of medical scribes is a workaround pseudosolution for a broken health care system. Adding a third party to the appointment is better than burning out our physicians - an all-too-frequent occurrence. But the real fix would be a combination of more realistic expectations for documentation and improved electronic health record technology.