Amy: As part of my teaching in Family Medicine, I held weekly teaching rounds which I called “Bio-Psychosocial Rounds”. These hospital rounds involved meeting with the medical team to discuss difficult patients in the hospital: These challenges typically included patients with unexplained symptoms, where doctors suspect an emotional component, “non-compliant” or angry patients, or patients with depression, or with anxiety symptoms masquerading as a medical problem. Following our meeting, I would often interview the challenging patient and/or family, accompanied by medical students and residents.
I remember one meeting where, I confess, I felt somewhat disturbed listening to the case presentation. The patient for discussion, Ramona C., a fifty-eight year old woman, had just had her second leg amputated due to complications from diabetes. As the doctor, an intern named James, told the story, it was clear that he had absorbed the hospital atmosphere surrounding this patient. The professional staff in charge of caring for this patient had grown frustrated and angry with her. Never a good thing for anyone.
The presenting problem was that the Ms. C refused to speak. She would turn her head to the wall when asked a question, and the hospital staff felt thwarted in their efforts to engage her. Though the patient appeared to have a supportive family who visited her regularly, Ms. C remained steadfast in her refusal to cooperate with the hospital staff. She barely spoke, barely ate, barely interacted at all. The nurses’ aggravation was palpable, the word “noncompliant” metaphorically stamped on the patient’s forehead.
As James described the case, I wondered about this middle-aged woman, Ramona. She had just received a terrible blow, the amputation of a second leg. There seems to be something more profound, more devastating at losing the second limb. More humiliating. More helpless. I wondered about her “noncompliance.” In my experience, lack of self-care can be made of a lot of things. Poverty, lack of education, the state of being overwhelmed by the demands of living can all contribute. I have met many women who spend their lives caring for others, and the idea of taking care of themselves feels alien. Simple, willful neglect is a rarity, in my experience.
The other thing that stood out about this case was the patient’s family. This woman had loving, caring family members. Her husband, kids and grandkids visited her regularly. The husband’s caring attitude toward his wife included his not taking “no” for an answer when he tried to feed her. These didn’t sound like faint-hearted people. I’m always interested in the healthy aspects of patient’s lives. It helps me to understand them more fully. It leads to a more accurate diagnosis, a less distorted, more comprehensive approach to treatment. Too often “health” tends to be invisible, obscured by illness.
My student James and I decided to visit Ms. Ramona to see what we could learn. As we entered the room, I was struck by the patient’s misery. Lying in bed, her thin, grey hair matted, she looked withdrawn, forlorn. I asked permission to sit on her bed. She looked like she needed warmth. I instinctively reached out to push her hair out of her eyes. Jonas pulled a chair up close to Ms. C’s bed. We surrounded her with care.
I began by telling her I’d heard about her “adorable” grandchild who’d been bouncing on her bed the day before. This elicited a faint smile. We continued with some light conversation, mostly about her family. For some reason the patient responded, maybe because we weren’t trying to get anywhere. These kinds of non-goal-directed conversations can work wonders to get non-talkers to talk.
Then slowly we segued to her amputation. I got the impression that she didn’t feel like she was supposed to “complain”, so she decided not to talk. Her verbal responses were muted, but I could feel her grief, her anguish. She was sitting on a lot of hurt. I could palpate some anger as well. These emotions lay right under the surface and she needed permission to express it. I said something like, “You sound like you’re really mad”.
Long pause. Then she let it go. She let loose with a plaintive howl. She said, “I AM mad! I did everything they told me to do! I did what I was supposed to. And look what happened to me!”, motioning to the leg that was no longer there. She continued wailing for a few minutes. She couldn’t understand this painful turn of events. It didn’t make sense to her. This rather dramatic scene wasn’t the least bit scary, by the way. Ms. C expressed herself with intensity, but she wasn’t crazy or out of control. She was hurt. She was mad. She was scared.
At this moment her husband and pregnant daughter walked in. Clearly country folks, they dressed plainly, while their faces revealed an inviting kind of openness. Both husband and daughter carried themselves with stability and calm. James and I greeted them warmly and filled them in on our conversation. The husband and daughter sat down. They did not try to “shush” Ramona, but did wonder about her upset. Her husband said, “Why you so mad?” Ramona didn’t answer, and I spent a few moments normalizing his wife’s grief. I indicated that he didn’t need to worry about her upset, that her responses were healthy given what had happened.
We sat around talking for a while. These were some lovely people. The husband had been employed for the last ten years in what he described as a “very busy job” as a grounds-keeper. He had the misfortune of being recently laid off, and was currently looking for work. He came across as a straight-forward, gentle man who seemed proud of his ability to take care of his family. He described how, after his wife’s first amputation, they had moved from a trailer into a small home. His wife couldn’t navigate the trailer with her wheel-chair and the husband clearly delighted in his wife’s ability to get around in their new home. Their young adult kids lived close to them, and their eight-year old granddaughter–-the delight of their lives–-lived with them.
Despite living through some hard times, these folks exuded a kind of buoyancy. The husband coaxed a chuckle out of his wife when he talked about a her “waddling around”. The daughter chimed in about how her mother always took care of everyone and “now it’s our turn to take care of her. And she doesn’t like that! She doesn’t like us to help her!” Ramona’s family was ready, willing and able to give back a little of what they’d gotten from this woman. And this clearly lay outside of Ramona’s comfort zone.
We talked for a few more minutes and I remarked about how impressed I was by the caring in this family. They enjoyed hearing that. I imagine it felt affirming to hear that from a stranger, a professional. These are poor people, and they probably don’t get too much appreciation from the outside world.
We left them in a relatively upbeat mood and James and I went to another room to process what had happened. I was struck by the response of my Family Doctor student. As we entered the room to begin our de-briefing, James began weeping. I think both of us were surprised. As he talked through his tears, he made it clear that he felt “ashamed” for having been so critical of this woman. For practicing cold medicine. He understood, and felt, what happened during our consultation.
As we talked, I was impressed that James wasn’t afraid of the patient’s emotionality. He recognized that what happened was healing for the patient, her family, and, perhaps, for him. He responded to the humanity of the experience, the depth of the encounter. And, by the way, the whole interview lasted slightly over a half-hour. So the issue of doctors “having no time” was revealed for the smoke-screen it can be.
I was heartened by James’ response. On occasion I’ve done a consultation where young Residents can’t see what’s in front of them. They are still processing the interview through their intellect, and fail to observe. Or experience. In our follow-up discussion, James reflected on how he had unwittingly fallen into the often invisible trap of medical culture which reduced Ms. C to a stereotype. A pain-in-the neck “noncompliant” patient. Easy to dismiss He experienced firsthand what can happen when professionals fail to take the time to understand. He learned what happens when you practice Medical care from too much distance.
Understandably, most health and mental health professionals like to feel competent and in-control, but in an interview like the one with Ms. C, we have to be open to the unexpected. We have to allow for the patient’s messy reactions, and for what it stirs up in us. I respected James’ full embrace of this experience. As we finished our session, I thought to myself, “James’ response to this consultation bodes well for the development of this young physician.” That gave me hope.