Stigma, Social Inclusion, and Recovery from Psychiatric Illness

I'd not applied the concept of "social inclusion" to mental health work until I read the August 2010 editorial in Psychiatric Services:

Promoting tolerance and community acceptance of persons with psychiatric disorders, although necessary, is no longer sufficient. We need to move beyond "antistigma" initiatives and predominantly biological-pharmacological treatments. Promoting "social inclusion," an approach that originated in European Union countries, is one way we can move forward. It requires that society and its institutions actively promote opportunities for the participation of excluded persons, including persons with psychiatric disabilities, in mainstream social, economic, educational, recreational, and cultural resources..."Exclusion" is beginning to replace so-called stigma in our conceptualization of social attitudes associated with disabling mental illnesses.

"Social inclusion" has the key mark of an excellent idea - it seems totally obvious. But as the editorial suggests, it's a new way of thinking about and approaching discrimination, stigma, and chronic psychiatric illness.

A central advantage of the concept is that it focuses on what we are for (social inclusion) rather than what we are against (stigma). We can work towards inclusion at multiple levels - with patients (sharpening skills that facilitate inclusion), with communities (supporting workplace and recreational inclusion), and at the level of policy and law (promoting access and reducing barriers).

Reducing stigma has long been an objective in mental health, but stigma is an intervening variable, not an end target. The underlying hypothesis of efforts to reduce stigma is that folks with serious psychiatric conditions will experience more social opportunity and will develop more positive self images. But it's better to make outcomes of this kind the direct target of advocacy and clinical work rather than assuming that they will emerge on their own if stigma decreases.

Social inclusion is a human rights approach. It's an extension of the Declaration of Independence:

We hold these truths to be self-evident, that all [humans] are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

That's a strong grounding for clinical work and the mental health recovery movement!

(To learn more about the concept of social inclusion, see the U.N. Department of Economic and Social Affairs publication on "Measuring Social Inclusion" and the U.K. Inclusion Institute's document "Social Inclusion and Mental Health.")

The Wellesley Mosque Visit Promoted Understanding

Diana Eck, professor of comparative religion and Indian studies at Harvard University, and director of the Pluralism Project, whose mission is "to help Americans engage with the realities of religious diversity through research, outreach, and the active dissemination of resources," has a letter in today's Boston Globe about the Wellesley Middle School visit to a mosque (see my post on the topic). Because Diana Eck is such an important academic leader on behalf of cultural understanding and tolerance, I quote her letter here:

The lesson here is to engage in dialogue with Muslims
September 21, 2010

THE FUROR over Wellesley sixth-graders’ visit to a mosque is just one more volley fired at the Islamic Society of Boston Cultural Center by Americans for Peace and Tolerance. In a climate in which Muslims have been constantly misrepresented by other voices than their own, the opportunity to hear Muslims speak about themselves is a priceless part of learning. Bravo to the Wellesley schools for incorporating such experience into their curriculum.

Of course, the line between observing and participating needs to be more carefully explained in an educational setting, but Wellesley students and parents voiced significant appreciation for the mosque visit.

On Friday, I was at the mosque with my class from Harvard. We arrived just as Bilal Kaleem, the programming head of the Islamic Center, was responding to the allegations of the video that was secretly filmed by a parent but produced with manipulated cuts and narration by Americans for Peace and Tolerance. For most of my students, as for the Wellesley middle-schoolers, it was the first experience of Friday prayers and of dialogue with our Muslim hosts.

I think it is way past time for Americans for Peace and Tolerance to take advantage of the hospitality of the mosque and actually engage with the community the group has so insistently defamed. It is the American way, and the only way to peace and tolerance.

Diana L. Eck
Cambridge

One of the most positive "side effects" of a medical career is the opportunity to know such a wide range of our fellow human beings. "Cultural competence" comes from meeting and spending time with people, as we health professionals are privileged to do in our work.

Suspicion and hatred, as fomented by the group that made the hate-laden video about the student visit to the mosque, is bad for individual and societal health. Inclusiveness has the opposite effect. Diana Eck's scholarship and enterprises like the Pluralism Project are a crucial part of health promotion.

Wellesley Students Visit a Mosque - a Challenge to Tolerance

I was surprised to find Wellesley, Massachusetts, where I live, on the front page and editorial page of yesterday's Boston Globe.

Here's the story:

Sixth graders at the Wellesley Middle School take a course on "Enduring Beliefs and the World Today." The course includes study of Judaism, Christianity, Islam and Hinduism. According to the school superintendent "each teaching unit is developed similarly for consistency of presentation with the following construct: Stories of Origin and Important People (Early History), Core Beliefs, Holy Writings, Symbols & Objects, Holy Places & Places of Worship, Rituals & Rites of Passage, and Celebrations & Holidays." Students visit a mosque and a synagogue, attend a Gospel concert, and meet with a Hindu group.

In May, on a visit to the mosque, five boys (not Muslim) joined in the prayer service. A parent chaperone videotaped the service and gave the film to "Americans for Peace and Tolerance." Last week the group posted a decidedly unpeaceful and intolerant youtube video. Throughout the video a prominent banner at the top of the screen trumpets "Wellesley public school students learn to pray to Allah." In the spirit of the Protocols of the Elders of Zion, the video conjures a Muslim plot to convert vulnerable sixth graders.

In a thoughtful letter to parents, Bella Wong, Superintendent of Schools, (see here), supports the idea of teaching students about the range of beliefs in our pluralistic world. She's right - we need to understand each other. But she apologizes for the participation in prayer:

The purpose of the field trip was for students to visit and observe a place of worship. It was not the intent for students to be able to participate in any of the religious practices. The fact that any students were allowed to do so in this case was an error. I extend my sincere apologies for the error that occurred and regret the offense it may have caused. In the future, teachers will provide more clear guidance to students to better define what is allowed to fulfill the purpose of observation.

Years ago my two sons attended the Wellesley Middle School. If they had asked for permission to join in a ritual that was not part of our own family tradition I would have said "it's fine to join in as long as it's not offensive to the people you are visiting."

When I was hitchhiking around France after my second year of college, I observed the services at a small, rural Catholic church. The young priest was giving communion, and he caught my eye and invited me to join in. I didn't - I'm not Catholic, and I feared that if a non-Catholic participated in the ritual it would be seen as a sacrilege. Years later I asked a friend who was a priest about the theology. He told me - "you would not have done any harm to the Host or have been doing anything disrespectful." Had I known that I would have responded differently in that little country church.

In teaching young health professionals we try to encourage empathy. When we are able to feel our way into our patients' worlds we become more effective clinicians and better human beings. With regard to the "Wellesley five," Marijane Tuohy, another parent-chaperone, got it right: "It was just a simple prayer. I think the students were just trying to experience it. They weren’t being indoctrinated. If anything, it was just the opposite."

Psychiatric Treatment after the Haiti Earthquake

I just read an article on "Haiti Earthquake Psychiatric Relief" in this month's American Journal of Psychiatry, written by Kent Ravenscroft, a good friend ever since our residency training days.

Kent tells about his intervention with a medical student who had been buried in rubble for 4 days. The treatment is a brilliant model of "battlefield" mental health treatment. It conveys what a privilege it is to be able to work with fellow human beings in circumstances of crisis. The intervention embodies what it means to treat people with respect, to listen to them carefully, and to build on their strengths. Kent's spontaneous comment to the medical student/patient brought tears to my eyes.

Here is the clinical story Kent tells:

At one clinic a young woman walked in complaining of insomnia, palpitations, visions, and voices. I encouraged the Haitian doctor to get every detail. The voices and faces were fellow medical and nursing students who had been trapped with her as their building collapsed in Port-au-Prince. Trapped in pitch blackness, pinned under rubble, she could hear the voices, the screams and cries, of those injured and dying around her. Over 4 grueling days she heard her friends' voices becoming weaker and finally dying out, leaving her alone with only one friend's voice, somewhere way above her. This faithful friend knew she was down there and told the rescuers. Then the friend's voice, too, became weaker and died out, leaving the woman utterly alone.

Our patient could hear a rescuer calling her name. Finally she found enough strength to call just once, loud enough to be heard. Her throat was parched, and her loneliness deafening, but she did not give up. She felt she had to survive. She was the last of all her friends. Then, finally, someone got to her feet. She had been suspended upside down the whole time. As she talked with us, encouraged to open up about her darkest hours, her voice grew stronger, calmer, and more certain. I finally blurted out that I was so proud to have someone like her as a member of our profession.

She broke out into a radiant smile and told us she was hoping to go back to medical school when and if classes started. She would be finding out the next day when that might be. She already knew that two-thirds of her class of 45 had died, and she confessed that she was petrified about going back. She was having palpitations and hyperventilation, with panic-like attacks when she thought of getting near the collapsed school building again. She dreaded finding out who else had died, including teachers. We gave her some diazepam for her insomnia and her anxiety, in addition to three desensitization and behavioral techniques to give her ways to systematically move toward mastering her fears, thoughts of impending disaster, and phobic avoidance of school and her future.

She had told us she was a student leader, so we suggested she could help others share painful experiences and learn these treatment techniques, allowing her to re-find her community and overcome her fears and mourning. We asked her to bring a journal of her homework accomplishments to an appointment at our next clinic, a week hence. We clarified issues around survivor guilt, emphasizing that she was living for herself and that her self-exploration and healing would allow her to be a better, more compassionate doctor sometime quite soon.

Bloodgate - a Medical Ethics Violation that Wasn't Sexual

If you don't follow international rugby you probably haven't heard about "Bloodgate."

In April, 2009, Harlequins was trailing Leinster 6-5 in the quarter finals of the Heinecken Cup in Twickenham, England. Harlequins Winger Tom Williams suddenly spouted blood from his mouth, which allowed the team to substitute Nick Evans, a specialist kicker, for him. (It didn't work - Evans's kick missed, and Harlequins lost.) But it wasn't blood coming out of Williams's mouth - it was fake blood, from capsule the trainer had given him.

Leinster and the officials were suspicious. In the locker room Williams panicked. He entreated Dr. Wendy Chapman, an emergency room physician acting as team doctor for Harlequins, to cut his lip to provide an alibi. After some hesitation, Dr. Chapman made a small cut in his mouth. Later, when asked about the incident, she testified that a loose tooth had caused the cut.

But a video of the game showed Williams taking the capsule from his sock, putting it into his mouth before the "blood" appeared, and winking at his teammates as he came off the field. The true story came out. Dean Richards, coach of Harlequins, was barred from coaching in the European league for three years. Steph Brennan, the trainer who gave the fake blood capsule to Williams, was suspended for two years. The team was fined 259,000 pounds. And, in September 2009, the UK General Medical Council suspended Dr. Chapman for a year.

At her recent hearing, Dr. Chapman testified that she was awaiting surgery for breast cancer at the time and was suffering from depression at the time, which impaired her judgment. She was deeply ashamed of what she had done and "horrified" that she had lied about her actions.

The GMC could have made the loss of medical licensure permanent, but elected to let her resume practice. The chair of the GMC panel said "Normally such misconduct could be expected to result in a finding of impaired fitness to practise.. However, the circumstances of this case are wholly exceptional in that the expert medical evidence suggests that in the absence of depression you would have not acted in this way." Apparently her prior performance had been without blemish. The GMC interpreted her actions as an aberrant, one-time matter.

In one of my posts about sex between doctors and patients I explained what makes the relationship unethical as follows:

Developing a sexual relationship with a present or former patient tarnishes the profession itself, whatever its effect on the individual patient. Harm to the patient is a probable outcome of doctor-patient sex. But harm to the profession is an inevitable outcome. Patients, the public, and physicians themselves, will lose trust in and respect for the medical profession.

I think the GMC came to the correct conclusion about Dr. Chapman. Assuming that her ethical lapse in the Williams situation was not part of a pattern of unethical behavior, and that her performance as an emergency physician met clinical and ethical standards, there is no reason to see her as a risky bet for future patients. And the harm to public perception of the integrity of the medical profession is not the same as with a sexual relationship. Dr. Chapman's lapse showed human frailty, but did not represent self-gratification or potential exploitation of a patient. A year of suspension and a full public apology is enough.

(To read more about "Bloodgate" itself, see here, here, and here.)

Moral Heroism in Little Rock, Arkansas

I was in my second year of college when President Eisenhower sent troops to Little Rock to protect the nine black students who integrated the high school. I have a vivid memory of their bravery. So when I saw in the New York Times today that Jefferson Thomas, one of the nine, had died, I read the obituary.

I was especially moved by the final two paragraphs of the account of Mr. Thomas's life:

In 2007, Mr. Thomas told The Arkansas Democrat-Gazette that prayer had helped him through the integration struggle. He said that one Sunday at church he heard the hymn “Lord, Don’t Move My Mountain, Just Give Me the Strength to Climb,” inspiring him to pray for strength, rather than for the acceptance of his classmates.

“It seemed that overnight, things stopped being so bad,” he said. “The same things were happening, but they didn’t hurt me as much. I didn’t feel like I was a failure. I felt victorious because I made it through the day.”

His report validated an experience I often had in clinical practice. I saw many patients with chronic conditions that could not simply be "cured." I interpreted resilience and the capacity to find joy in life despite persistent symptoms or unavoidable medication side effects in terms of "courage." That led me to think a lot about where courage came from.

With patients who had strong religious traditions, I inquired as to whether prayer was meaningful for them. If it was, I encouraged them to pray. That's what Jefferson Thomas did in high school, with extraordinary results. Apparently the line from the hymn created an "aha" moment for him.

For a number of years I had the privilige of leading a wellness class in my group practice. At the end of the six class sequence a man with chronic back pain reported that on a 1 - 10 scale the pain had not changed, but his suffering had diminished markedly. He taught me that "symptoms" and "suffering" aren't the same thing. His comment stuck with me over the years.

If listening to a hymn was enough to create courage and resilience, life would be a lot easier, and self-help gurus would have less of a market for their services. Jefferson Thomas volunteered to be among the group to integrate the high school. My guess is that he had an innate temperament (I often used the word "wiring") conducive to courage and receptive to the message in the hymn. And he was part of a group that knew it was making a historical step.

Death Postponed for Safety Net Dialysis Recipients

Uninsured patients with kidney failure - especially undocumented immigrants - who would be dead without dialysis, are caught between the financial plight of safety net hospitals and the disgracefully rudderless U.S. health system.

In January I predicted that the problem, which first showed its head at Grady Hospital in Atlanta, would become epidemic. This week, a report by Kevin Sack, who has been following the story for the New York Times, showed how our society chips away at ethical problems without yet coming to grips with the root causes.

Grady, a prototypical safety net provider, was in deep financial trouble, and decided to close its dialysis clinic, which was losing several million dollars each year. But who would take on care of the patients? Leaving them to fend for themselves would violate the precept against abandonment. But continuing the clinic as it was would contribute to Grady's decline, which would lead to harm to other patients.

Grady encouraged undocumented immigrants to return to their home country by paying for air fare and three months of dialysis. But poor patients can't get ongoing dialysis in Mexico, where most of the undocumented came from. Ultimately Grady agreed to pay for dialysis for 38 remaining patients, most of whom are undocumented immigrants, at Fresenius, a German-owned, Fortune 500 dialysis company, until August 31.

It appears that a new agreement will forestall avoidable death for the 38. Fresenius has agreed to take on 5 as "charity cases." DaVita, another Fortune 500 dialysis company, will also take on 5. Emory University in Atlanta will take on 3. And, for the moment, Grady will scrape together funds to pay Fresenius, for continued care for the remaining 25.

This Rube Goldberg arrangement allows 38 chronically ill people to continue life-prolonging treatment, at least for now. But in a sloppy way it does more. A year ago, Grady Hospital owned the problem alone. Now it has two Fortune 500 companies and a leading University holding the problem with it.

In my January post I proposed a comprehensive approach to the safety net problem:

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.

Nothing of the kind has happened since January. But the likelihood of our taking a comprehensive approach to the problem is improved by Grady having succeeded in involving DaVita, Emory, and Fresenius in sharing responsibility for its solution.

Ethical deliberation shows us the right direction to go in, but doesn't tell us how to get there. I hope I'm right that by sharing the problem with three powerful partners, Grady is helping us inch towards doing better by this group of 38 patients and those facing similar problems at other safety net sites.

Harvard Pilgrim's New CEO (and my new Boss)

In February, Eric Schultz was named President and CEO of Harvard Pilgrim Health Care, where I direct the ethics program. Eric is my boss's boss's boss.

This past week Eric reactivated the Let's Talk Health Care blog that his predecessor had launched several years ago. I don't know Eric well yet, but his initial post made me very happy. Here's the key quote - with my highlighting added:

During the past 25 years or so, I worked both in the health insurance and health delivery space. My first dozen years, I worked up the ranks at a national, for profit insurance company. At that point, I believed I had a broad and well-rounded view of the health care system. But thanks to a physician executive who took a chance on me, I stepped into the role as the Administrator of a physician group practice comprised of 25 primary care physicians. It was a humbling experience and an opportunity that many insurance executives should have in order to learn first-hand just how an insurance company can disrupt the physician/patient relationship. Equally important, it was at this group practice where I learned the value of a coordinated clinical care delivery system practicing within a prepaid environment. This group practice also had a unique integrated financial arrangement with a local health plan – where all parties focused more on the needs of the patient and creating efficiency rather than maximizing fee-for- service visits or filling hospital beds. This stuff wasn’t rocket science but did depend on a combined vision and high degree of mutual trust.

In the 1990s, at the height of the backlash against managed care, I did research on the interaction between insurers and providers in my own clinical area - psychiatry. What I saw was a tragedy in the making.

My research involved interviewing mental health providers and the manged care reviewers they interacted with at the other end of 1-800 lines, and observing those interactions directly. What I saw was good people who lacked a real understanding of the ethical responsibilities of the other "side." Providers didn't understand that insurers were managing collective funds on behalf of individuals, employers and public agencies. As a result, they demeaned reviewers as "bean counters" who didn't care about patients. Reviewers didn't experience the distress felt by patients and their families directly. As a result, they demeaned providers as arrogant narcissists who felt entitled to spend collective funds without any accountability.

To be truly patient centered, a health system requires what Eric calls "combined vision and high degree of mutual trust." We need clinicians who understand what their patients need and who can advocate for their patients within the insurance system and, when needs fall outside of what insurance covers, within the wider community. But clinicians must understand that containing costs isn't "bean counting" - it's an ethical responsibility for society. And we need insurers who can manage collective funds in an efficient manner, but who also understand, in Eric's words, "how an insurance company can disrupt the physician/patient relationship."

Tension between those who are directly responsible for patient care and those who are directly responsible for stewardship of collective funds is not peculiar to the United States. I observed the same tension in England between clinicians and the National Health Service. The tension arises from a classical good v good conflict. It is good to care about patients and to seek to do everything possible for them. And it is good to care about containing health care costs so that individuals and society have the wherewithal to address other important areas of life. As important as health care is, individuals and societies have other interests as well!

I agree with Eric that it's important for insurance executives to have a deep understanding of the doctor-patient relationship. But it's equally important for clinicians to have a deep understanding of the impact of soaring health insurance costs on family budgets and the ability of employers to create new jobs. That's why the concept of "accountable care organizations" that take responsibility for both quality of care and efficiency is such a good one.

(For additional background on my new boss see here and here)