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Collaboration Then and Now

Posted By Margaret Kim Peterson, Wednesday, September 14, 2011
I began my pilgrimage toward collaborative care twenty years ago with a step not obviously headed in that direction: I got married. I was a doctoral student in theology and ethics at Duke University. He was a Korean-born, Harvard-educated molecular biologist named Hyung Goo Kim. He was also HIV-positive. We were terrified by what this might mean for him and for us, but felt so deeply that we were right for each other that we decided to face it together. We had met in Boston and were married there in June of 1991. Hyung Goo then joined me in North Carolina, where he became both an employee of Duke University Medical Center and a patient at the DUMC Infectious Diseases clinic.

Those were the bad old days of AIDS, before the development of the multi-drug antiretroviral therapies that have done so much to extend life and support health among persons with HIV and AIDS. AZT had become available a year or two earlier. A patchwork of treatments existed for various AIDS-related opportunistic infections. Beyond that there were people: a small cadre of doctors and nurses, pharmacists and phlebotomists and aides, working together in a kind of war-zone atmosphere, trying desperately to do the best they could on behalf of a highly stigmatized patient population (consisting as it did largely of gay men and IV drug users) and in the face of an inevitably fatal disease.

Among the ID clinic’s staff were its social workers. At that time, there were two: Trish, who had been doing pioneering work among persons with AIDS for some time, and Martha, who had done a field placement under Trish’s supervision and had recently joined the clinic as its second full-time social worker. Along with Hyung Goo’s doctor, John, Martha became one of two fixed stars around whom our experience of the clinic revolved. She was Hyung Goo’s case manager and his individual psychotherapist. She also accompanied us through our marriage, acting sometimes as our coach, sometimes as our referee, helping us to create a life together that was as healing as it was heartbreaking.

Martha and Hyung Goo became deeply attached to one another in the four years that he was a patient at the clinic. He confided to her his concerns about how I would manage after he was gone, and when he died, in 1995, Martha promised him that she would remain a part of my life for as long as I desired it. Martha was a significant support to me early on in my widowhood. In more recent years, in many of which our contact has not gone much beyond an exchange of holiday letters, I have continued to treasure Martha for the love that she had for Hyung Goo. After me, she was the person who knew him best in those last years of his life, and I know she misses him, too.

Two years after Hyung Goo died I got married again, this time to a biblical scholar who was also a Duke PhD. A year later I finished my degree and we moved to the Philadelphia area to take up teaching jobs. I had always liked teaching, but as time went on I found that what I liked even better was listening to my students talk about their families and their relationships. My husband and I developed a cultural-critical and highly interactive course on marriage, and after co-teaching this class every year for eight or ten years I realized: it’s time to make a change. I applied to a master’s program in marriage and family therapy at La Salle University, and in August of 2009 went back to school.

Because I had no background in the social sciences, I had been admitted on condition that I take a remedial course called "Introduction to Graduate Research and Writing.” Perhaps I should have pushed back more strongly against this (my existing PhD wasn’t adequate preparation for a master’s degree? Really?), but it’s providential I didn’t. I took the course as an independent study, and in pursuing the project I had designed came across a mention of a discipline called "medical family therapy.” Eureka! If there was anything that could bring together my interests in and experience with health and illness, medical care, psychotherapy and family functioning, this was surely it.

In June of 2010 I participated in the weeklong Medical Family Therapy Intensive offered at the University of Rochester as a part of their family therapy training program. Conversations there about how I might locate a suitable internship placement in the Philadelphia area led to a mention of the Collaborative Family Healthcare Association, and suggestions of local CFHA members I might contact. One of those contacts eventually issued in the possibility of an internship in integrated behavioral health at a Federally Qualified Health Center in Philadelphia. I visited the site for an interview in the spring of 2011.

I walked in the door and found myself in a large waiting room with a television on one wall and racks of literature around the edges. It reminded me of the Durham County Health Department, where I used to go for anonymous HIV testing back in the days when I was at risk for HIV. This room was a lot cleaner and brighter than I remembered the health department being, but it still took me back—back to those experiences of sitting and waiting, one stranger among many, to see a provider I didn’t know and might not see again, for a test I was afraid to have anywhere else, and whose result would spell the difference between relief and catastrophe.

Eventually the director of behavioral health appeared. I had talked with Suzanne on the phone, but had not met her before. We introduced ourselves, made our way to her office, and sat down to talk: what is an FQHC, what does it mean to help people manage their health over a lifetime, what are the differences between the competencies and priorities of doctors and of therapists, what are the challenges and frustrations of being at the front lines of health care reform. We’d been talking for some little while when there was a knock at the door. A physician’s assistant entered; she was seeing a patient and needed a behavioral health consult.

I had been listening to Suzanne tell me about her work. Now I was watching her work. First a brief conversation with the PA, then a longer one with the patient and a family member—presenting problem, history, associated medical and psychosocial factors, possible treatment options. Out to the provider office to confer with the PA, back to talk with the patient again, back to the PA for a prescription, back to the patient and family member for conversation about coping strategies for the immediate future and the slightly longer term. The patient and family member left, and Suzanne turned to me: what did I think of all this?

What did I think? Now it wasn’t the health department to which I felt myself taken back, but the ID clinic. The physical setting and utilization of space were themselves reminiscent of the clinic: the warren of little rooms, clinicians busy with patients, no dedicated therapy room, the social workers weaving around the medical providers, using space they weren’t using, vacating space they needed. Even more evocative was the interaction between Suzanne and the patient and family member. Suzanne could have been Martha; the patient could have been Hyung Goo, or me, or any one of the numberless other patients at the ID clinic, all of them beset by multiple psychosocial stressors, all of them so much more complicated than their diagnoses.

Somehow it had never occurred to me that in becoming involved in integrated behavioral health, I would be stepping into a role analogous to that which Martha had played in Hyung Goo’s life and in mine. It was as if for the past decade and a half I had been on a long train journey that I had supposed had been taking me further and further away from a life that had seemed over and gone. When the train finally stopped, I stepped out onto the platform, expecting to find myself somewhere utterly unfamiliar. Instead I felt a shock of recognition: "I know this place; I’ve been here before.”

Of course I haven’t been, not really. The Fairmount Primary Care Center in 2011 is not the Duke University Infectious Diseases Clinic in 1991. The time and the setting are different, health care resources and practices are different, the patients and their needs and challenges are different. But there are continuities, too. I suspect that many of the patients Suzanne and her colleagues see present with at least some of the anxiety and sense of alienation that characterized my long-ago visits to the health department. And I suspect that what might come closest to meeting the needs of many of those patients is not just a targeted response to some narrowly-defined medical problem, but a broader sense of belonging and of holding like that which characterized my experience at the ID clinic.

This is what collaborative care is all about. Collaborative care begins with mutually respectful cooperation between medical and psychosocial providers, patients and family members and persons in the community. Even this is hard enough, as possibilities and needs and challenges change with different patients, different providers, different stages in a disease process or a family’s life. But collaboration itself is not the goal. The goal is the giving and receiving of care in ways that are themselves therapeutic, that create an environment of nurturance and safety, that open doors to healing even—perhaps especially—when cure is elusive and obstacles seem overwhelming.

Martha was at the center of my experience of such care in the years of my first marriage and afterwards. Is it possible that I could ever be competent to make a similar contribution to anyone else’s care? Given the heroic significance that Martha has assumed in my life, this seems hard to imagine. Perhaps I need to remember that Martha never set out to be anyone’s hero(ine). She set out to do her job, to stay anchored in the maddening and tragic realities of illness and of medical care while remaining open to the possibilities of healing and of wholeness, to retain her own sanity while helping others to retain or regain theirs.

Can I do that? Well, I’ll try. The internship starts this week. I’ll have a number of fellow interns learning the ropes with me, and we’ll all have Suzanne to show us what do to. Of course the person I’d love to be talking to as the experience unfolds is Martha. Alas, Durham is a long way from Philadelphia. But perhaps there is a way that the written word can bridge that divide. Perhaps writing about the internship can itself be a collaborative move, one that links past and present, possibilities and realities, writer and readers, and (in particular) me and Martha.

This blog post is an initial contribution to that written collaboration. I hope there will be more contributions throughout the year. I’ll be thinking of these posts as letters: letters to all the readers of this blog, but most especially as letters to Martha.

Margaret Kim Peterson, PhD, is a student in the master’s program in Marriage and Family Therapy at La Salle University in Philadelphia. She is doing an internship in integrated behavioral health at Fairmount Primary Care Center, under the supervision of Suzanne Daub, LCSW, Director of Behavioral Health for Delaware Valley Community Health.

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Randall Reitz says...
Posted Wednesday, September 14, 2011
Margaret, I'm very excited for your new blog and look forward to reading your internship chronicles. Your training and experience reflect uncanny parallels with my own. I hope that your letters to and experiences with Martha will imbue your clinical work with the patient-centered spirit of your blog.
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