Portal de Periódicos da CAPES

Vowing to Care

2002; Elsevier BV; Volume: 23; Issue: 1 Linguagem: Inglês

10.1016/s0885-3924(01)00387-6

1873-6513

Joseph J. Fins,

Primary Care and Health Outcomes

Jennifer walked up to her mother's casket to rearrange the flowers. The arrangement of pink carnations that matched the coffin's liner was off-center. As the preacher preached, she walked to the front of the church to set things straight. The flowers were centered and the flowing ribbons untangled. As she returned to our pew, I stood to honor the daughter who so honored her mother. I acknowledged not simply that small gesture, but also the ten years I watched her care for her mom. A seamstress by trade, Jennifer tended to every detail, even the pink nightgown that her mother now wore. For all these years, she had tended to so many details in a health care system indifferent to her mother, Eunice Thomas, a black woman from Guyana with a long and challenging medical history. Rheumatoid arthritis and a hypercoagulable state had left Mrs. Thomas with a legacy of stroke and chronic lung disease. Congestive heart failure and hypothyroidism further complicated the picture. Since her early fifties, she had been dysarthric and confined to a wheel chair. Sound in mind but slow in speech, it had been too easy to dismiss Mrs. Thomas. Jennifer knew this and like a lioness protecting her cubs, she defended her mother fiercely. This was apparent in our first meeting in the clinic. I was a first year Fellow in general internal medicine. Our eyes met just as Jennifer twisted her mother's wheelchair into a tight corner in the maze-like exam room. She looked me up and down, pausing for an eternity at the ID that hung off the lapel of my starched white lab coat. When she completed her assessment, she simply shook her head. I had come up short. I just wouldn't do. Disheartened, I looked across at Mrs. Thomas. Dressed in a yellow floral summer dress, she peered up mischievously from beneath a straw hat. And she smiled. I smiled back. Even if her daughter didn't know it yet, Mrs. Thomas had just become my patient. Emboldened, I turned to Jennifer. I decided to break all the rules I had been taught in medical school about doctor-patient communication. Deviating from the standard script, I offered a frank interpretation of our situation. “You're probably thinking that your mom has gotten another young white doctor and that won't do. Well, I am a new fellow in medicine and I'm not all that experienced. But I'll do the best I can do to take care of your mother. If I don't know the answer to a question, I will make sure that I get help.” Jennifer extended her hand and said, “Dr. Fins, we're going to get along just fine.” And we did. Over the years, the care of Mrs. Thomas became a practice unto itself. Mrs. Thomas' fragile health led to frequent hospitalizations and outpatient visits. When she wasn't in the hospital, there were calls from Jennifer about her pain and symptom management. I soon learned Jennifer's home phone number by heart. That wasn't the only thing I learned. I also gained an appreciation of the difference between physical pain and suffering. Despite the unfathomable burden of illness that she carried, Mrs. Thomas remained happy. She did not seem to suffer. Amazingly, she always seemed to have a sunny countenance. She reveled in her family and had the strong gravitational pull of a matriarch whose children were always in her orbit, if not always in sight. She enjoyed the little things too, like the little red Sesame Street Elmo doll that was pinned to her pillow when she was in the hospital. Mrs. Thomas would remind me that morning rounds were incomplete if we did not listen to Elmo's chest after examining hers. Mrs. Thomas generally came to the office in good spirits but one memorable Tuesday she had a furrowed brow and the deepest sense of sadness that I had ever seen. She was atypically quiet and unengaged. I was concerned that she was not well and quickly began to quiz mother and daughter about any new symptoms or complaints. No, nothing was wrong. No chest pain or shortness of breath. Yes, she was eating and sleeping well. No fevers. None of that. So, why the frown, why the sad demeanor? Mrs. Thomas thought it was time to say goodbye. Evidently, the adult day program that she had been attending had been taken over by a managed care company to which I did not belong. She had been informed that to remain in the program she would have to get a new doctor from the managed care plan. She faced the loss of her friends or her doctor, and her sorrow was very real. It seemed a patently unfair choice. Why couldn't she join the plan, stay with her friends and continue to see me? What would be the logic of disrupting Mrs. Thomas' world this way? Who would benefit? It seemed counterintuitive that such a disruption would decrease medical costs or provide better medical care. I tried to reassure her. “Don't worry, we'll take care of this. I'll call them and explain your situation and that'll be that.” I was confident that I could work this out. I would simply speak with a fellow physician and set up an arrangement. I fancied a collaborative effort between two doctors interested in the patient's welfare. With this rather nostalgic notion in my head, I spoke with a recently minted physician-administrator. I pledged to work with the managed care program, call for approvals and collaborate with them. The doctor was sympathetic but referred my request to a manager, who wasn't interested in my attempt at advocacy. Appeals to other administrators were to no avail. These efforts were rebuffed by managers who could not understand Mrs. Thomas' needs. I tried again with the physician-administrator. Since our initial call, he had gained confidence. He told me it was in her best interest to consolidate care in his program. His opinion was in no way weakened by the fact that he had never met my patient or her family. Ultimately, Mrs. Thomas decided to leave the day program and apply to a new one. I dutifully ordered the required tests and completed the history and physicals that were required for admission. We had to demonstrate that she had enough special needs to warrant admission but was still well enough to qualify. Mrs. Thomas was anxious and a bit depressed as she waited to learn whether the program would accept her. Change does not come easily to older patients and the disruption in her routine was difficult. She had to stay at home, missed her friends, and was upset that some of her kids felt that she had made the wrong decision. After being homebound for a month, Mrs. Thomas was finally accepted into another program. Her routine normalized. All was forgotten until I received mail from the old day program asking me to write her monthly medication orders. I thought it was a clerical mistake. I called Jennifer and was surprised to learn that Mrs. Thomas remained in the same day care program with the same wheel chair, the same nurses, and the same friends. The only difference—worthy of both Kafka and the Marx Brothers—was that it was now being operated under a different corporate name. This realization provided some comic relief to an otherwise difficult situation. Over time I watched the life ebb out of Mrs. Thomas. Her hospital visits became more frequent, the crises more acute. I spoke with Jennifer almost every day. By this time Mrs. Thomas had moved out of her home and into Jennifer's. These developments made it necessary for us to address issues about end-of-life care and goals of care. We talked about her preferences regarding resuscitation and completed an advance directive in which Mrs. Thomas designated that Jennifer act as her decision-maker should she lose the ability to speak for herself. Our mutual objective was to maintain Mrs. Thomas' quality of life and avoid unnecessary interventions that would not make her more comfortable. Remarkably, despite her initial suspicions about a disinterested health care system, Jennifer now appreciated that more care was not necessarily better care. We had built a level of trust that allowed us to keep Mrs. Thomas out of the hospital and forgo “cures” that were worse than the disease. This trust allowed us to focus on her mother's needs without the perception that we were not doing enough because we had not capitulated to the technological imperative and the lure of intensive care units. But this trust was fragile. On one occasion when Mrs. Thomas had an emergency admission to another hospital, Jennifer rescinded her mother's do-not-resuscitate (D.N.R.) order. In that unfamiliar hospital, Jennifer feared that a D.N.R. was an acronym for do not respond, and was in fact a recipe for neglect. The last time I saw Mrs. Thomas was on a rainy May day. She had developed abdominal pain. Over the years, I had taken many abdominal films when her belly was not right. Mrs. Thomas knew the drill. But this time was different. Jennifer told me her mother did not want to come down to the hospital for the x-rays. She wanted to die at home. I decided it was time for a house call. Jennifer met me outside her apartment in a torrential rain. Our relationship—our alliance in caring for her mother—was now ten years old. When she greeted me with an umbrella, she was now sheltering me, as if protecting me from my own sense of grief. Mrs. Thomas lifted her head from her pillow as I entered her room. Her once round face was gaunt. Skin hung from her cheeks and her faint smile soon faded into a deep sleep. My exam took place under the loving gaze of her husband's portrait. A handsome and formal man, Mr. Thomas' picture had been placed across the room so that Mrs. Thomas could always see him. She had recently spoke of “being with Daddy” and it seemed that this journey home had begun. I rolled her onto her side to listen to her lungs. As I heard the crackles, I realized that Mrs. Thomas was indeed dying. The end, which she had eluded for years, had arrived. Before I put my stethoscope away, I closed my eyes and recalled my first look at her x-rays, when my knowledge of Mrs. Thomas was little more than that two-dimensional image in black and white. A groan soon brought me back to the present. Unable to eat or drink, Mrs. Thomas had been unable to take her pain medication. I wanted to start a transdermal opioid, and thought that an analgesic suppository would help tide her over until the patch could take effect. I called her local pharmacy to order the suppositories. Although this is the standard practice in palliative medicine, the first pharmacist questioned what I was doing. No, he did not stock hydromorphone suppositories, why would he? The second one was more encouraging. Another doctor had prescribed them last week but there were none in stock. He offered to order some that would be available the following week. The experience soon became surreal. As I tried to find a pharmacy that carried opioid suppositories, the television in Mrs. Thomas' room carried a news story on the emerging field of palliative care. Yes, progress was being made, but it is still nearly impossible to get the right pain medications in the Bronx and other under-served areas where pharmacists are concerned about crime. Ultimately, we found a pharmacy miles away—in a more affluent community—that stocked the medication. I prepared to go back to the hospital. I softly said good-bye and left Mrs. Thomas fast asleep, with Jennifer watching out for her as always. Ten days later, I attended Mrs. Thomas' funeral. Her family had asked me to give the eulogy. The late 19th century Methodist Church was perched on a little hill just above elevated subway tracks. It was clearly beloved by its congregation—freshly painted with strong oak timbers, with the week's hymns carefully posted next to the pulpit. I recognized the thirteen Thomas children from the countless clinic visits and family meetings we had held outside hospital rooms and surgical suites. Her children had returned to the Bronx to bury their mother. A white face entering this black church alone, I was immediately embraced. I was Mrs. Thomas' doctor, and thus an honored guest. All barriers of race or ethnicity had been transcended in our decade together. I felt accepted and loved. As I prepared to speak, I sat quietly in my pew and watched the Thomas children, grandchildren and great-grand children assemble around the open casket. Sixty or seventy familiar faces, each with their matriarch's smile, gathered and grieved. I watched their tears and heard their sobs and I sighed. Viscerally, I felt the weight of caring for someone who was so beloved by so many. To know that such a precious life had been entrusted to my skill was almost overwhelming. Tears came to my eyes. I felt like a graduating medical student again about to take the Hippocratic Oath, awestruck by the solemnity of doctoring. As I ascended the pulpit, I was renewing those ancient vows: Into whatever house I enter, I will go into them for the benefit of the sick … The author thanks Jennifer Thomas for her permission to tell her mother's story and for the use of their family name. Dr. Fins is a Soros Faculty Scholar of the Project on Death in America of the Open Society Institute.