Author's Note: "I first encountered integrated biomedical and psychosocial care at the Duke University Medical Center Infectious Diseases Clinic, where my first husband was a patient from 1991 until his death in 1995. A central figure in the care he (and I) received there was his social worker, Martha Zimmerman, MSW, LCSW. These letters are for her."
A month or
two ago I was accompanied into a consult by a young woman who was training for
a new job as a behavioral health consultant at a clinic elsewhere in the city
of Philadelphia. The consult was an integrated care visit, which meant that we
entered the exam room knowing nothing but the patient’s name and date of birth,
and with the agenda being to explore behavioral and psychological factors that
might be affecting the patient’s health: diet, exercise, substance use,
depression, anxiety, trauma.
was a middle-aged man who turned out to be a rather colorful character—flamboyantly
gay, with a long history of polysubstance abuse and a range of other health
issues including infection with HIV. He and I were quickly absorbed in
conversation about his concerns and his goals for his health, some of which
were more conventional (adherence to his medication routine) and some of which
were less so (getting back in touch with a "hormone doctor” who had been
helpful to him in the past).
the provider arrived and the consult was over. I left the room with the woman
who had been observing me, whose presence I had more or less forgotten about in
my focus on the patient. "Well, that was interesting,” I remarked. "It
certainly was,” she agreed, fervently. Something in her tone of voice made me realize:
she had been a little startled by this patient. Her reaction shed a sudden
light upon my own: I had responded to this patient as if he were an old friend.
this come from? It came, I realized, from my experiences at the Duke University
Infectious Diseases Clinic in the early 1990s. My late husband was a patient
there, and practically every other patient was a flamboyantly gay man. This was
back in the day when there wasn’t much of a welcome mat anywhere for people who
were gay or HIV-positive, and one of the things that distinguished the Duke ID
clinic was the absolutely unconditional welcome extended to people who were
either or both of these.
extraordinarily grateful for the care that my husband and I received at the ID
clinic. At the same time, it was unnerving to find myself surrounded by the
clinic’s other patients, many of whom were (like my recent patient) very colorful
characters with complex psychosocial histories, and (superficially, at least)
not at all like me. "What on earth am I doing here?” I would think. "How is it
that I belong here, in this place, with these people?” It felt like I was
normal and they weren’t, and I wanted out.
grasped only dimly at the time was that I was no more or less unique an
individual than anyone else at the clinic, and the same unconditional welcome
that was extended to everyone else was extended to me. There was no comment and
no criticism; only curiosity and empathy and a desire to be of help. And it
changed me; and one specific way it changed me was to create in me a deep sense
of kinship with individuals who (like my recent patient) remind me of the
clinic and its patients.
broader sense, I find that experience at the Duke ID clinic informing every
aspect of my new work in behavioral health. Behavioral health is all about
welcoming; it is about creating a safe space in which the patient feels
confident that he or she is cared for, and thus feels free to explore issues
that may feel overwhelming or scary, whether those have to do with symptoms ("I’m
in pain all the time”) or risk factors ("I know I need to quit smoking”) or
relationships ("I’ve had so many losses in my family recently”).
this safe space seems to happen very easily. The other day I entered an exam
room to find a woman in her 30s who a few weeks earlier had come in complaining
of severe situational stress and anxiety. The doctor had prescribed an
anxiolytic and invited her to come back for a followup visit in a month. She hadn’t
taken much of the medication, she reported, but she was feeling much better. "That
sounds like a big change,” I said. "How has that happened?”
sure. Externally, things were much the same: the job, the kids, the busyness of
life. "But I’m not stressing about everything,” she said. "I just let it go.
And I go out with a girlfriend from work, and we go shopping.” "It sounds like
the beginning of the change might have been your decision to come to the
doctor,” I said. "And then the doctor responded supportively, and that was
enough to help you make some different decisions about how to handle your
patient said, thoughtfully. "I guess that’s exactly what happened.” As if on
cue, the provider entered; I summarized our conversation and left the room. It
had been a straightforward and enjoyable consult: the patient was resilient and
had already reached out for and received some of what she needed and had made
good use of it, she had been ready to relax into the opportunity to explore the
sources of her increased well-being, and the connection between provider and
patient had been enhanced.
it’s not so easy. Later that same day I saw another patient, a man in his
mid-twenties, at the doctor for a routine checkup. He was handsome, personable,
and in apparently perfect health. He was also unemployed and uneducated beyond
high school. Mostly, he just watched TV and went to the gym. "What would you
identify as your primary goal for your life or health?” I asked. "Oh,” he said,
"I want to have kids and grandkids, with some kind of check coming in—disability,
thought (but did not say). "You are smart and strong and 25 years old, and you
actively aspire to be on disability? What is wrong with you?” In that moment, I
was not feeling empathetic, or welcoming, either. Somehow I managed to stay
with him. He wasn’t proud of his lack of ambition or accomplishment, he said;
in fact, he was troubled by it. He hadn’t done anything bad with his life, but
he hadn’t done anything good, either; years were going by, and he had nothing
to show for them.
"If you did
have an interest in something, what would it be?” I asked. His eyes lit up. "I
love trains!” he said. "Not subway trains. Real trains, big ones.” And then he
returned to the subject of his inertia in life. "I need a drill sergeant,” he
said, fretfully. "Someone who will tell me what to do and make me do it. My mom
made me work in high school, but since then I haven’t had anyone to make me do
anything. I think things would be different if I had a drill sergeant.” He
paused for a moment. "Or maybe if I had a father.”
All of a
sudden I saw before me, not a 25-year-old man, but a six-year-old boy, a boy
who loved trains, and who had no father to show him how to be a man. No wonder
he had been unable to grow into adult achievements and responsibilities. No
wonder he longed to be himself a father and a grandfather, yet had no idea how
to integrate those roles with other aspects of an adult identity. What might
help him develop into a fuller sense of himself and a greater ability to reach
more of his potential?
ever had any outpatient psychotherapy?” I asked. "Do you know what
psychotherapy is?” He hadn’t, and he didn’t. I offered a few words of
explanation: "Children need certain things from their parents when they’re
growing up, and if they don’t get those things, it can be very difficult for
them to move into satisfying adult lives. Psychotherapists work with people who
didn’t get what they needed when they were children, and help those individuals
grow up and into more of what they want as adults. There are outpatient clinics
where psychotherapy is available, and if you were ever interested in this, we would
be happy to refer you.”
was half done with this speech, the provider entered the room. She waited while
I finished, and then I rose and took my leave. Of course I hope that this
patient got some small piece of what he needed in our conversation, and that
perhaps some day he will get more of what he needs in the context of some other
relationship, perhaps even in therapy. What I got from our conversation,
though, was a reminder: every patient needs and deserves welcome and safety,
even—perhaps especially—the ones for whom empathy might not come automatically.
Primary Care Center (FPCC) is not a big place. There’s a hallway for adult
medicine with ten exam rooms, two apiece for each of five providers. There’s a
hallway for pediatrics with four exam rooms for the two pediatricians. There
are various support and administrative spaces—a waiting room, a front desk, an
alcove full of medical records, a couple of triage rooms, a lab, a nurse’s
station, a room full of computers where the providers sit to chart, storage
closets for supplies and medications. And there is a behavioral health office,
which until recently was a modestly-sized windowless room tucked in beside a
back stairwell, next to the copy machine and a corridor leading to a bathroom
that was usually out of order.
behavioral health office was occupied by the director of behavioral health (my
supervisor, Suzanne) and shared with the two behavioral health interns (me and
my colleague Frank). It was furnished with a couple of computer work stations,
a few chairs and a bookcase. We used it for consultations with patients who had
been handed off to behavioral health by their providers, for scheduled
followups with patients and family members, for charting and making phone
calls, and for supervision. With all three of us using the room for all these
purposes, it got a little crazy sometimes, like when more than one of us had a
patient to see at the same time. Mostly, though, it was adequate.
social worker quit. She was the latest in a string of social workers to quit
after not very long on the job, and it fell to Suzanne to try and figure out
why. Part of the problem, it appeared, was the location of the social worker’s office,
which opened directly onto the waiting room and made the social worker
vulnerable to limitless demands by both patients and staff. Suzanne hired a new
social worker, and moved the new hire into the only other space available—the
behavioral health office. It was a vast improvement for the social worker, who
now had enough control over her time and space that it was possible for her to
do her job.
It was not
an improvement for behavioral health. Behavioral health couldn’t just move into
the former social work office, since that office’s semi-public location would
have made it impossible to safeguard patient privacy. But the office now shared
between behavioral health and social work was now occupied by a rotating cast
of patients consulting with the social worker. Suzanne and Frank and I couldn’t
meet with patients there. We couldn’t make phone calls. We couldn’t talk with
each other. We couldn’t even find places to put our coats. Right about the time
this change happened, a consulting psychiatrist began coming to FPCC one
morning a week. She, too, was supposed to work out of the behavioral health
office. Guess how well that worked?
crunch highlighted a question that had been percolating along in the back of my
mind for months: what exactly is the place of integrated behavioral health?
Even at FPCC it’s not really clear how integral a part of the operation
behavioral health is. Suzanne has been there for 17 years, and patients still
occasionally report that when they return for followup visits with behavioral
health, the front desk tells them that there is no such department. It strikes
me that this may be less a problem with the front desk personnel than a
realistic reflection of the medical care system as a whole. Everybody knows
that medical offices are staffed with doctors and nurses. But behavioral
health? What’s that?
mental health side of things, I don’t see much more evidence that integrated
behavioral health is any closer to achieving mainstream status. It’s certainly
not represented in the curricula of the majority of training programs in my
field, marriage and family therapy. In the large and thriving master’s program
in which I am enrolled, I have yet to hear the subjects of physical health and
illness even mentioned, let alone explored. I got my internship at FPCC approved
only with difficulty, and I have the sense that my faculty supervisors are less
than enthusiastic about the work I’m doing there. After all, it’s not specialty
mental health. And they’re right—it’s not. It’s primary care.
As much as
I want there to be room for integrated behavioral health, both in the worlds of
biomedicine and of mental health care, it’s not clear how or whether that’s
going to happen in any significant way. It really seems like such a shame.
Biomedicine is a fine thing, and so is specialty mental health care. But there
is never going to be enough individual or family therapy to go around, and it’s
more than lots of people need or want anyway. And part of the reason the
medical care system is bankrupting us all is that we keep throwing more pills
and procedures at problems that have at least as much to do with intrapersonal
and interpersonal dynamics as they do with physical health or illness.
other day I saw a patient for an integrated care visit. "What brings you in
today?” I asked, as a prelude to my standard set of screening questions. She
had pain in her shoulder, she said, radiating up her neck and down her arm and
side; it had been this way for a couple of months. "What was happening a couple
of months ago?” I asked. The patient couldn’t think of anything, but as we
talked, more of the particulars of her life emerged: she was the single mother
of two young children, going to school, negotiating details of child care with
her mother, who was herself rearing two grandchildren close in age to the
me that this patient’s pain might have a lot more to do with her mother than it
did with her shoulder. "You know,” I said to the patient, "we don’t do ongoing
therapy here, but we would be happy to meet with you on one or several
occasions to discuss this further. You could bring your mother, if you liked,
and we could all talk together.” "Really?” she said. "What would I say to my
mother, to explain why I was bringing her in?” Later in the day I looked at the
patient’s chart. The provider had found no organic basis for her pain, but
noted that the patient had said she would like to follow up with behavioral
days I found myself puzzling over that pain in the patient’s shoulder. If the
pain was about her mother, why was it in her shoulder? A pain in the neck I
could understand, but why a pain in the shoulder? An image came to mind of the
patient and her mother, yoked together, rearing children of the same age, but
being themselves of different generations, and one of them the parent of the
other. No wonder they were having trouble pulling together. Behavioral health
and biomedicine are having trouble pulling together, too. In the current
culture of medicine, biomedicine is the established player and behavioral
health the young upstart, and it is hard to learn to work together.
Will my patient come for a follow-up visit? Maybe she will.
Maybe she’ll even bring her mother. If she does, we have a place to meet.
After Suzanne and Frank and I and the social worker and the psychiatrist had
spent a week falling all over each other in the
behavioral-health-cum-social-work office, Suzanne said, "We have to do
something about this!” The following week a corner of the office was
partitioned off into a consult room. The office wasn’t big to begin with, and
the new consult room is the size of a closet, and not a very roomy closet at
that. But it has a door and a couple of chairs, and it’s definitely better than
nothing. And in a sign that perhaps things are looking up, the bathroom down
the corridor is even working.
In the 1990s several medical and public-health professionals at Stanford University developed a six-week peer-facilitated workshop designed to equip persons living with chronic medical conditions to manage not only their disease(s) but also the effects of these on their lives and emotions. A foundational assumption of the workshop is that people whose medical diagnoses may vary widely nonetheless share many similar concerns and challenges and can draw on similar resources in meeting them. No matter a person’s specific health condition, he or she needs the knowledge and the skills to manage the illness itself (like taking medication, or making changes in diet or exercise), daily activities (like household chores, jobs, and relationships), and the difficult emotions that are an inevitable part of living with illness (like anger, depression and anxiety).
The participants in the earliest versions of the chronic disease self-management workshop have now been followed by tens of thousands of participants across the country and around the world. In the United States, the program is in use in 50 states. Governmental and non-profit agencies are licensed to train lay leaders and to arrange for the workshop itself to be offered in various community-based settings (like senior centers or doctors’ offices) to groups of ten to twenty participants at a time. The Philadelphia Corporation for Aging (PCA) is one such agency, offering workshops that are aimed primarily at older adults who either live with a chronic disease themselves or are caregivers to someone who does. One workshop was offered at Fairmount Primary Care Center (FPCC) this fall.
The co-facilitators of this workshop were one of FPCC’s behavioral health interns (who has diabetes), and FPCC’s health educator (who cares for a relative who has leukemia). Thus while these leaders both happened to be health professionals, their pertinent qualification for leading the workshop was that they both live with the challenges presented by chronic health concerns. As persons living with chronic illness, they could model coping skills for participants rather than just telling others what to do. Workshop participants themselves were recruited with flyers posted at FPCC and in the surrounding area, inviting all interested parties to join the workshop (which in its PCA version is called "Help Yourself to Health”), and which was scheduled for six consecutive Tuesday mornings from 10:00 AM to 12:30 PM.
The group met in an upstairs conference room at FPCC. A few participants were on time for the first meeting. Most were late. In the end, there were about a dozen people in attendance. A representative of PCA introduced the program and the facilitators, nametags and notepads were distributed, and the workshop began. "What problems do you experience in connection with your chronic condition?” asked one of the facilitators. Everyone spoke at once. The dominant theme was confusion—confusion about medication, diet, pain, why no one at the doctors’ office will answer the phone. The group dynamic could only be described as raucous. I’ve been a classroom teacher for twenty years, and I left that meeting a little shaken. Would I have been able to manage that group? I wasn’t sure.
Each meeting of the workshop included attention both to content and to process. Content areas addressed included all the concerns raised by participants in that first conversation and more—the mind-body connection, breathing, fatigue, communication, depression, advance directives, medical decision-making, navigating the health-care system, planning for the future. Important as all this was, process was at center stage most of the time. Participants were encouraged to articulate their goals, come up with ways to accomplish those goals, make specific plans that would bring them closer to their goals, carry out those plans, identify obstacles that arose, revise their plans accordingly, and celebrate every small success—a little more activity, a little better nutrition, a little more time with friends or restful sleep or positive attitude.
As the weeks went by the group began to settle down. Participants began to understand what was being asked of them when they were invited to identify problems, brainstorm possible solutions, and see new ways through old dilemmas. And the members of the group began to behave less like a crowd and more like a team. In session five, a participant with a usually jovial manner was oddly combative through much of the meeting. Finally he confessed—a close friend was acutely ill, and he felt grief-stricken and helpless. He was near to tears. The group was quiet. Then another group member spoke, recalling a past psychiatric hospitalization and her own feelings of grief and helplessness at that time. Her vulnerability seemed both to contain his tears and to hold out hope for the future: "I got through that; you’ll get through this.”
Eventually the final meeting of the workshop arrived. Everyone was on time. "What things have we learned?” asked one of the facilitators. "What skills have we gained?” Again everyone spoke, but one at a time. "Now when stuff comes up, we know how to deal with it better.” "I can manage some of my pain a different way than I could six weeks ago.” "It’s important not to keep yourself locked in the house. I need to go out and be amongst people.” "I’ve learned that not everything has to be done right away. I can take my time and do it another way. There are alternatives to everything.” "I’ve learned to stand back and watch myself so I don’t get into a blue funk. I can control what I can, and I let the rest go.” "I used to put myself down a lot, saying, ‘I can’t.’ I learned that I can.”
The transformation was extraordinary, from chaos, confusion and helplessness the first week, to order, clarity and self-efficacy the sixth week. In later conversation, one of the facilitators said that this was certainly the greatest degree of change he had witnessed in the several times he had led the workshop. Fair enough—every group is different, and this group was evidently toward one end of the continuum. Still, the lesson to me was clear: never discount the potential for growth and change. Even a little structure, information and encouragement can go a long way toward helping individuals to join with one another in taking small steps that make a big difference. "I wish this class were longer,” one participant said as that final meeting of the workshop drew to a close. "It’s not over,” said someone else. "We’re going to live it every day.”
became a part of my life on January 9, 1990, when the man I was not quite in
love with yet sat me down and said, "There’s something you need to know.” What
I needed to know was that he was HIV-positive. I was stunned. I had heard of
HIV and AIDS, of course. Ryan White was still living, and I had read the news
accounts of how shamefully he had been treated by too many people, and had
resolved that if I ever met anyone with AIDS, I wouldn’t rush screaming from
the room. But I really didn’t think it would ever happen. I wasn’t at risk for
AIDS, and neither (I naively imagined) was anyone I knew.
learned a lot since then, starting with the fact that you can’t know just by
looking at a person what his or her risk factors are. You also can’t know just
by looking what part HIV or AIDS has played in someone’s life. I married the
boyfriend with HIV, was widowed a few years later, and since then have felt
myself marked both decisively and invisibly by that experience. The years I
dwelt in the land of AIDS were the most formative of my life, but where are the
marks of that residence? Kaposi’s sarcoma is visible; AIDS widowhood isn’t. My
husband used to worry that people would look at his KS and know he had AIDS. No
such signs exist for me.
World AIDS Day approaching, it occurred to me that many of my colleagues at
Fairmount Primary Care Center probably had hidden histories with AIDS as well,
histories that I would only learn if I asked about them. So I did. A
generational divide emerged immediately, between those old enough to remember
the plague years, and those for whom AIDS has always been a more or less
manageable chronic condition. The mere existence of that younger generation—one
for whom AIDS has always been a more or less manageable chronic condition—still
takes my breath away. My husband and I used to say we believed that such a day
would come. He didn’t live to see it, but I have.
of the younger people I spoke with have never had a friend or personal
acquaintance who had HIV or AIDS. That’s not to say they aren’t concerned about
HIV and AIDS; several of them are regular participants in fund-raising and
consciousness-raising events like the AIDS walk, and they recognize HIV and
AIDS as serious health problems, particularly among underserved populations
like the poor, those with limited access to health care, and racial minorities.
But AIDS is not something they encounter within their social circle. AIDS is a
disease of the "other.” And in that sense, not much has changed. In my day, the
"other” (whether imagined or real) was a gay man; now the "other” is poor and
older colleagues all had stories about people they had known who had died of
AIDS, mostly in the early years of the epidemic—friends from college, family
friends, in some cases family members. In each story I felt I could hear the
echo of a shudder or a sob, echoes borne of memories of this terrible disease,
breaking all the rules of modern diseases (they’re supposed to be treatable!),
opening the secrets of families and individuals, disrupting relationships, inflicting
waves of suffering before finally carrying people off decades before it should
have been their turn to sicken and die. Or perhaps the echoes were of my own
shuddering sobs, all so long ago and yet still present in the way that a memory
wish I could be as sanguine about AIDS as the words "manageable chronic condition”
suggest. Yes, I know that treatment options for HIV and HIV-related conditions
have expanded exponentially in recent years, and that many individuals’ disease
can be well-controlled for years on the multi-drug retroviral regimens that now
exist. But how many people have access to these therapies and can comply with
them? In the U.S., at least, factors (like poverty and addiction) that increase
an individual’s risk for HIV are identical with factors that decrease the
likelihood that an individual will have access to treatment or will be able to
comply with treatment. HIV is not an equal opportunity disease; it is a disease
of the disempowered and the vulnerable, and it hits mostly people who are
the stigma associated with AIDS and HIV, while undoubtedly less than it used to
be, is still palpable. I’m struck by the fact that in the three months I’ve
been a behavioral health intern at FPCC, no patient has ever disclosed his or
her HIV status to me. I know people have HIV; I see it in their charts. But
they don’t tell me. Granted, I don’t ask—we screen for tobacco use, substance
abuse, depression, anxiety, and PTSD, not for infectious diseases like HIV. But
I hear a lot about diabetes and hypertension and high cholesterol, none of
which I ask about either. AIDS and HIV remain unspoken, unrevealed,
even as my own history with AIDS lies hidden from view.
after a dozen years as a college professor I went back to school to get a
master’s degree in marriage and family therapy, a primary motivation was my
desire to spend more time listening to other people’s stories, and to do a
better job of responding to those stories in healing and helpful ways. Now, a
couple of months into my internship in integrated behavioral health, I’m
listening to lots of stories, and I hope I’m responding helpfully, at least
some of the time. But the impression I take away from many of these encounters
has less to do with the stories I hear than with the ones I don’t.
day a few weeks ago I knocked on an exam-room door and entered to find a
pleasant middle-aged woman who, it came out, suffers from chronic pain related
to osteoarthritis and exacerbated by obesity. Our conversation centered on her
ongoing efforts to exercise and to lose weight. After our visit I pulled up her
chart and found a note from a previous behavioral health consult, detailing the
patient’s insomnia and the relaxation techniques that had been suggested to
her, along with a recommendation that behavioral health follow up on this at
the patient’s next medical visit. I had failed to ask this patient about her
sleep, and as a result had heard nothing about it.
next visit of the day was with another middle-aged woman, a hostile one this
time. She didn’t want to talk, she said; she just wanted her meds. Before I
could leave she changed her mind: "What do you want to know?” I listened as she
told me about her hopelessness, the granddaughter who constitutes her primary
reason to want to live, her opinion of the antidepressants she had been
prescribed in the past (Seroquel worked okay; Zoloft was "like candy”) and the
marijuana she uses to stimulate her appetite (it "doesn’t count as a drug”).
After our visit I pulled up her chart: "Cocaine abuse disorder—chronic.” I
hadn’t asked; she hadn’t told.
next visit was with a man, irritable from pain, who gradually became more
animated as he detailed his complex medical problems and his regimens for
dealing with them. He seemed a little odd, but nice enough. Also oddly, he
seemed to share various of his problems with someone else: "We have insomnia,”
he informed me. "We have sleep apnea.” After our visit I pulled up his chart:
"Patient seems somewhat grandiose,” read the note from a past behavioral health
consult. "Refers to himself in the first person plural.” Note to self: when
patient seems odd, consider asking more questions.
then there are the stories I don’t hear, not because I don’t think to ask, but
because behavioral health’s focus on function (rather than, say, history)
requires that I not ask. There was the woman who, when I inquired about her use
of alcohol or drugs, said, "I gave all that up when I went into the shelter.”
That turned out to have been ten years ago, and we ended up talking about how
she had managed to stay clean and sober for ten years (no small achievement for
anyone). But I longed to know more about the shelter, and what had happened ten
years ago that had required that she go into it. But there wasn’t time; I
woman had gained a great deal of weight during an unhappy period in her life,
but was now in a better place and was gradually losing the weight. Toward the
end of the consult, almost in passing, she mentioned the recent deaths of two
sisters. There were now ten surviving children in the family; there had been
twenty, "all from the same mother and father. I’m the baby girl, and I’ve got a
younger brother.” It was all I could do not to turn over my behavioral health
questionnaire and start drawing a genogram. What were the ages of all these
siblings? Had there been sets of multiples? What about her parents? What were
their stories? Of course there wasn’t time. I didn’t ask.
then there was the man, twitchy with anxiety, beset with suicidal thoughts,
homeless, wanting a referral to a psychiatrist so he could get restarted on his
psych meds. Until recently he had been in prison for an assault on a relative;
now no one in his family would speak to him. I assessed his suicidality,
conferred with my supervisor and the clinic social worker and his physician,
got him his referral and some medication to tide him over. But what I really
wanted to know was, how had this man been elected to be his family’s scapegoat?
How had he ended up as the crazy one, the violent one, the extruded one? Of
course there wasn’t time. I didn’t ask.
reality is that in integrated behavioral health (as in primary care more
generally) there are two time frames in view. The first is that of the
individual visit, which is almost always short. The second is that of the
patient’s lifetime, which one hopes will be long. Ideally, integrated
behavioral health providers see patients periodically over the course of their
lives. But in any individual visit, time is limited. It’s like opening a book
and reading one page, or at most two. You don’t get to read the whole
book—there’s not time. You talk with the patient about his or her story as
you’ve glimpsed it, and you hope to hear more at some future time.
I attended my first pain group the other day. Pain group at Fairmount Primary Care Center (FPCC) was instituted two years ago and consists of an hour-long monthly meeting for selected patients who are taking narcotic painkillers for chronic pain related to any number of underlying medical conditions. Medication of any kind tends to be at best a partial remedy for chronic pain, which by definition doesn’t just get better. In fact, the more patients either need or believe they need narcotics to manage their pain, the more likely they are to need and benefit from other things as well, like social support and behavioral strategies that can help them live their lives as fully as possible despite their pain.
Hence pain group—it’s social, and it includes attention to a variety of psychosocial and behavioral factors relevant to the management of chronic pain. It’s also required. Prescriptions for refills of narcotic medications are distributed at the end of pain group. No attendance, no prescription. There are actually two groups, one that meets on Thursdays and one on Fridays, so if you can’t make one meeting you can go to the other. And since pain group starts and ends on time (unlike individual appointments with the doctor), it’s easy to plan for. Patients receive a reminder phone call a week in advance, and prescriptions are printed in advance as well for those whose attendance is expected.
Eight patients were at pain group the day I attended—five women and three men, all seated around a cluster of tables in an upstairs conference room. Suzanne, the director of behavioral health, handed around portfolios and nametags belonging to each participant and then opened the meeting with a check-in consisting of a "pain log”—a sheet of paper, photocopied on both sides, on which each participant could rate on a scale of one to ten his or her experience over the past few weeks with respect to pain level and a variety of other factors: stress, exercise, activity level, sleep, appetite, mood, social interaction, alcohol use, financial concerns.
"Why do you think we do this?” Suzanne asked the group. "Why do we ask about these things?” "Because it’s all connected,” volunteered one participant. Yes, said Suzanne. Pain group can’t fix pain itself. But pain group can provide an opportunity to look at all these interconnected dimensions of life, to see how a person’s experience of pain might be affecting other things, and how other things might be affecting his or her pain. And it might be that deliberate changes in some of those other things—getting more sleep, for example, or more exercise—could lessen a person’s pain, or make it more tolerable.
So how was everyone managing? Answers varied. Some participants had days when they didn’t get out of bed, when it seemed that the best way to cope was simply to rest. Others found it important to be up and about, no matter what. Everyone was mourning a loss of some kind. A man who had worked all his life voiced his sense of uselessness at no longer being able to do so: "You feel like a stain on the wall.” A woman who had spent years raising children and grandchildren related a teenage grandson’s response to her efforts to get him to forego time with friends to watch a movie with her: "Grandmom, you gotta get a life!”
With each contribution to the conversation the resilience and resourcefulness of the group became more apparent. Disclosures were met with sympathetic nods and knowing smiles. More positive stories began to emerge—of efforts to "get a life,” to give back, to be involved. A group member who had lived on the streets for several years and is now stably housed serves dinner at a homeless shelter one night a week. "It makes me feel really good.” Another group member is active in her church. "When I’m there, I’m so busy I forget about my pain.” Too soon, the meeting was over. Participants were encouraged to set a goal for the next month ("Make it specific, so you can know whether you met it,” said Suzanne). Pain logs and goal sheets were returned to participants’ portfolios, prescriptions were distributed, and the group dispersed.
Pain group seems so obviously beneficial and empowering that it raises the question: why aren’t all patients who are living with chronic pain participating in such a group? Well, there are reasons. One is logistical—there is only one of Suzanne, and only so many groups that she can handle in a given week or month. But another reason is more purely human. Before the current arrangement was devised, Suzanne had tried unsuccessfully for years to have pain groups at FPCC. Then in 2009 she was in San Diego at the annual meeting of the CFHA, and shared her frustration with fellow CFHA member Patricia Robinson. "Do patients get their narcotics scripts at pain group?” Patricia asked. "No,” said Suzanne. "That’s why they don’t come,” said Patricia.
Suzanne came back to Philadelphia and sat down with the medical director at FPCC, who is also the provider whose panel includes the greatest number of patients with chronic pain. Together they created a clinical pathway for patients who in the medical director’s judgment either needed or stood to benefit most from pain group. That pathway included a new way of dispensing prescriptions for narcotic medication: at pain group, rather than in an individual medical visit. The hope was that both providers and patients would benefit: providers because they could feel safer prescribing narcotics to more adequately supported patients, and patients because they could develop more efficacious and integrative coping strategies.
It’s been a success, although not without challenges. At first, pain group seemed to some patients more like punishment than like care, and they responded with anger rather than with engagement. Only with considerable effort on Suzanne’s part did the first group settle down to the point that another provider could be involved and another group begun. Now, for providers, pain group has helped to facilitate a more collaborative relationship with patients, one in which it is clearer that both physician and patient have contributions to make to managing the patient’s pain. And for many patients, pain group has become a primary social outlet and the high point of their month.
The question does remain: why does there seem to be no way to get patients to come to pain group except to make their narcotics prescriptions contingent upon attendance? At the very least, this leaves out patients who aren’t yet at the point of needing narcotics, and who might never devolve to the point of needing them if they had the support of pain group. But if patients want pills and they don’t want groups, what do you do with that? It’s part of a larger question, namely, how is it possible to respect patients’ desires with respect to their own healthcare, while at the same time persuading them at least to try interventions that providers believe might be good for them?
Posted By Margaret Kim Peterson,
Wednesday, October 05, 2011
month into the internship, it’s hard to know where to begin in sorting
through the experience so far. Maybe the most obvious place to start,
then, is with the experience of being a beginner. It’s an experience I
haven’t had in a long time, at least not with anything so central to my
sense of self. It’s one thing to take up a new hobby. It’s quite another
to take up a new profession. All kinds of things that for a long time
I’ve taken for granted aren’t there any more, and I really notice their
for instance. As a college professor, I walk into a classroom and
introduce myself: "I’m Dr. Peterson.” As a behavioral health intern, I
follow someone else into an exam room and am introduced: "This is
Margaret, one of our students.” Soon, of course, I’ll be walking into
those exam rooms by myself, but I’ll still be
Margaret-the-behavioral-health-intern, never "Dr. Peterson.” I like to
think of myself as not particularly status-conscious, but what is
evidently closer to the truth is that I’ve become so used to my status
that I don’t notice it—until it’s stripped away.
there’s competence. I’m a big fan of competence; I admire it in other
people, and I enjoy it in myself. That’s missing, now, too (in me, that
is). After fifteen years as an academic I’m used to knowing what to do
and what to say, in person or in writing, at least most of the time. Now
I follow my supervisor around, observing as she interacts with patients
and providers. And guess what? A medical office is not academia, and
much of the time I find myself wondering what on earth I would do or
say, if I were on my own.
then there is that subtler dimension of competence that goes beyond
knowledge and skills to what one writer calls the integration of
intuition and reasoning.1 Anyone who has to perform complex tasks in the
midst of many competing demands learns to rely on automatic, intuitive
decision-making processes. Sometimes, though, autopilot isn’t good
enough; conscious attention is required, because something unusual is
going on and needs to be responded to intentionally and creatively. As a
teacher and advisor, I’ve gradually developed this capacity. How long
is it going to take me to get there as a behavioral health consultant?
wonder about this particularly because this kind of integrated
flexibility is something that in the past I have developed more or less
by accident. In my first experience of graduate education it was not
recognized as important, let alone deliberately cultivated. (I think
this is true of most Ph.D. programs, and it is one reason such programs
are better at producing good scholars than they are at producing good
teachers and advisors—teaching and advising require this kind of
integration in a way that "pure” scholarship does not.) This time
around, I’d like to be more intentional about it—but what exactly will
do know where to begin in acquiring knowledge and skills. There are
books to read (on the practice of primary care mental health, on
motivational interviewing, on psychopharmacology, on the variety of
conditions commonly or less commonly encountered in primary care). There
are examples to follow (like that of my supervisor, Suzanne) and
conversations to have (with Suzanne, with my fellow interns, with the
medical providers and the rest of the clinic staff). And of course there
is no substitute for just getting started, making my own mistakes, and
finding out what I do know and what I need to learn.
status is concerned, well, I’ll never have any, at least where the
hierarchy of the clinic staff is concerned. But perhaps there are
opportunities in that ego-deflating fact. There is something about
status that creates a temptation to relate to others from a position of
power and to fail to notice how this shapes (and possibly distorts)
relationships. Perhaps part of my job as an intern and a beginner is to
find ways to relate to patients and to colleagues that are informed more
by the desires to learn and to be helpful than by the dynamics of power
impulse, it seems to me, is at the heart of successful collaborative
practice, in whatever discipline. Professionalism and competence,
desirable and necessary as these are, can exert a pull toward
independence and isolation. After all, if I know what I’m doing, why
consult with other people? Collaboration, on the other hand, requires an
openness to the possibility that we all have things to learn, things to
give, and things to gain in working with each other. What those things
are emerges only in the process of collaboration—which can be
unsettling, exciting, or both.
1Lichtenstein, A. (2006). Integrating intuition and reasoning: How Balint groups can help medical decision making. Australian Family Physician 35, 987-989.
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
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
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
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
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
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
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.