Abstract
P
At his best Paul wore a mischievous smile accompanied by a joke and a laugh deep within his throat. His intelligence and sense of humor both entertained and challenged me. He enjoyed metaphysical musings and liked that I was familiar with the philosophical works he studied. He was as likely, however, to read People as Schopenhauer. He delighted in the gossip and absurdities of popular culture as well as his efforts to keep me current.
Paul's fragile health contributed to his status as a loner. He had few long-term friendships. When hospitalized, his mother was his most reliable visitor. I rarely encountered his friends. Occasionally he visited his sister in California but travel was difficult for him. Holiday plans became indefinite after his parents died. He sometimes visited his brother, or his sister might travel across country, while at other times he preferred to be on his own.
Paul didn't talk about himself—self-disclosure carried risk. I came to understand where he needed privacy. I felt a need to protect Paul. Over time he developed a trust that I knew him as well as a physician could and as well as he wanted. His frequent office visits and hospitalizations, sometimes under conditions of grave illness, strengthened our connection.
Paul had been diagnosed with Crohn's disease in his early teens. By his late 20s, when I first met him, he'd had dozens of hospitalizations, repeated surgeries for bowel resection, and 15 years of daily steroid dependence. His body was disfigured with patchwork abdominal scars, jejunosotomy, Cushingoid deformities, and ecchymoses. Over the years his list of medical problems grew: short bowel syndrome, adrenal insufficiency, major depression, COPD, chronic kidney disease, hypertension, nodular hepatic hyperplasia. For 20 years he received nightly IV fluids to prevent dehydration and deterioration of renal function. Periodically sepsis from central line infections would precipitate hospitalization.
A couple of years ago the fragile balance in Paul's health unraveled. He developed volatile fluctuations of blood pressure and kidney function. Nausea came and went. Unexplained, severe abdominal and back pain led to recurrent hospitalizations. Despite increasing doses of newly initiated fentanyl and oxycodone, his pain remained uncontrolled.
At home new problems emerged and escalated. Visiting nurses reported that his apartment had become unclean. Pet cockatoos had free range with all the attendant grime and contamination such license permits. Tom was routinely somnolent and had difficulty concentrating. At night he watched television until the early hours, falling asleep with lit cigarettes that branded his clothes and skin alike. He missed medical appointments and ran out of medications when he was too weak to leave his apartment. His nurses questioned whether his central line was being accessed hygienically and, after years of engagement, discussed closing his case due to safety concerns.
Paul was hurtling toward a collision. Yet again he returned to the hospital for lethargy, delirium, respiratory infection, and acute kidney failure. He was intubated for airway protection and respiratory support.
I visited Paul when he left the ICU. He appeared physically and emotionally diminished. His voice had become soft and raspy. The humor that stoked his defense against life's troubles was gone and his customary warmth was absent. I felt uncomfortable not to be welcomed.
Paul's sister had come from California. We three reviewed his hospital course. I had hoped that Paul would feel hopeful upon leaving the ICU. Instead he spoke of hopelessness. Every private moment was invaded by pain and apprehension. Months of frequent hospitalizations, volatile and uncontrolled medical symptoms, new oxygen dependence and the threatened loss of home nursing services had placed him in danger of losing his apartment. Discharge plans were focused on a nursing home, an immeasurable calamity for a man of 62 with sharp intellect.
Paul asked his sister to leave the room and quickly got to the point. He wanted to stop treatment and asked if I would support his wish to die.
Paul had been readying himself for this conversation but I was utterly unprepared. He had been seriously ill many times before, at times desperately so. Together we'd always managed to prevail. I hoped that I had been aware of the toll the preceding months had exacted, but I had to question whether I'd been attentive enough. At his office visits I'd been pressured for time and overwhelmed by his growing list of unresolved problems. Had focusing on clinical details kept me from seeing the larger, more important picture?
For Paul there was no faith that life on his terms might ever be reclaimed. I'd been at similar crossroads with other patients. I knew to ask questions and listen rather than rush forward with opinions and conclusions. When asked, Paul described the suffering associated with his pain and anxiety. He spoke of the absence of answers and his fear that there would be none. Although unmentioned, I knew that the prospect of moving to a nursing home was hell for him—an intolerable humiliation.
Paul seemed vanquished by despair. I asked about depression and he confirmed what appeared obvious in his face and voice. What would make life worth living? Getting back to his life of six months earlier, he said, before things changed: that would make life worth living.
I wanted to believe that turning back the clock was possible. I quickly assessed the opportunities for treating his pain, depression, and anxiety that might transform his outlook. It was too soon to embrace his plan. I needed time.
When Paul's sister rejoined us I sensed her frustration that I was not offering unqualified support for Paul's request. I expressed hope that with more effective treatment he would feel differently about his future. Reestablishing the status quo of Paul's life six months earlier seemed achievable. I asked for more time to get there.
When seen by a palliative care consultant the next day, Paul reported feeling “like I'm in the depths of hell and being kept there by Satan.” He rejected active suicide but asked that his treatments be stopped. He was found to be depressed and his anxiety inadequately treated. Despite earlier reservations, Paul's sister and brother wanted to see him at peace; they supported his decision. The palliative care consultant reported that Paul's family was upset with me for not giving support to his request. They questioned whether I was too emotionally involved to be objective.
A rapid alignment of opinion developed in the next 24 hours. The PCP, as I was identified in the chart, questioned the patient's judgment and capacity. It was implied that I might not be supportive of a palliative care philosophy and that perhaps I was too emotionally involved to understand Paul's appeal for help. I had become the problem.
I in turn was angry. Certainly I was emotionally involved. Rather than an impediment, I felt my emotional involvement and tenure as Paul's physician justified my claim to be heard. I saw prudence in avoiding haste. Concluding how to best support Paul should have taken more than the length of a consultation. His life mattered.
The following morning I received a call. Overnight Paul's jejunostomy seal had failed. He experienced yet another humiliating episode of fecal soiling. His central line had been contaminated and removed. There was question of sepsis. Paul did not want another line inserted. He declined IV fluids and antibiotics. Efforts were being expedited to obtain a psychiatric evaluation of his capacity. I told the hospital team not to bother. We all agreed that Paul knew what he was doing.
I thought these new developments constituted a major shift in the ethical dynamics of Paul's care. Trying to get him to reverse his decision was different from asking for time to improve status quo treatments. Pressuring him to consent to what he had refused would cross a moral boundary. It felt coercive.
When I saw Paul that evening he was alone. I was thankful for the chance to talk with him privately. I reviewed what I'd been told and asked him to discuss his choice. He wanted to know if I was angry with him. Paul's vulnerability and mine came over me like a wave. I tried to gently reassure him that I wasn't angry. I discussed my hopes that better treatment and time would help him look at things differently. When asked, I told him that I wouldn't try to stop him. I thought he was brave to confront his fears and mortality. I had hoped he might still see his life as worth living but I would stand with him. I would make sure that all within our power was done to alleviate his suffering and bring him to death peacefully. We expressed our love for each other and I promised to return soon.
The last time I saw Paul, he was substantially more comfortable. His family was present and I was welcomed as a good friend. There was joking, laughter, and memories. Paul, his sister, and brother shared childhood stories about rock and roll, motorcycles, and how they frazzled their parents. Paul and I recalled years long gone and he told stories about doctors that had preceded me. When it was time to leave I helped Paul into a wheelchair to go outdoors to absorb the sensations of a warm May evening. It was hard to say goodbye but I had hope that we'd see each other once more.
Paul's sister described his last day. She had been spending nights with him. On that final day, despite his inclination to keep his own company, he seemed to wait for his family to arrive. When everyone had gathered, he relaxed. His breathing pattern slowed and his sister lay down beside him. His family took turns saying their goodbyes. His breathing slowed further and soon he peacefully breathed his last in the company of those who loved him most.
For six months or more Paul's life had become a wellspring of suffering that literally filled him with fear and trembling. I had hoped that effective treatment could be found for his pain and anxiety. His existential distress, however, might never have yielded to treatment. Was this condition sufficiently compelling in a man without terminal illness to warrant prompt support of his request to end his life? Weren't we obligated to wrestle with him and ourselves before tacking in this ultimate direction? Might we have eased the sources of Paul's suffering so that this wonderful man would choose to live?
In the end I could not ask him to suffer because of the value I saw in his life or the hopes I had for his future. When his family and I together gave Paul our support, and his pain was better controlled, he was clearly more at peace. He had long struggled with his choice, questioning its morality, rejecting suicide, gazing apprehensively at what might follow this earthly existence. At my last visit I noted the reemergence of Paul's humor and playfulness. I recognized composure in Paul that had not been present for years. He was ready to let go. When I saw him last, so was I.