Serving Patients Who May Die Soon and Their Families

In February 2001¹ Joanne Lynn, MD, discussed the case of Mr M, a 47-year-old musician living for the previous 3 years with a recurrence of advanced rectal carcinoma initially diagnosed 8 years ago. At the time of the interviews with Mr M and his longtime partner, Ms L, an interdisciplinary palliative care team had helped Mr M with pain control and home services. An around-the-clock paid attendant supplemented volunteer help from friends. Interviews with Mr M and his partner illuminated their frustrations and distaste for the available hospice programs. His primary care physician described the complicated care and treatment plans that had been suggested and abandoned—including Mr M's enrollment and disenrollment from hospice twice—as Mr M and Ms L came to terms with the close of Mr M's life. Dr Lynn described the 4 necessities of treatment that Mr M's clinicians should provide: (1) prevention and relief of symptoms, (2) assessment of treatments, (3) advance planning and designation of a surrogate decision-maker, and (4) preparation for the time near death. Dr Lynn further explored the process of enrolling in hospice, and the need for changes in the organization and financing of end-of-life care to better match the changing trajectories of patients living with—and dying from—serious, chronic illness, whether one with a short period of obvious decline (eg, cancer), a long-term disability (eg, congestive heart failure), or a slowly dwindling course (eg, dementia).

Two months after the interviews, Mr M's health declined rapidly and he was admitted to an acute care unit; he was later transferred to an inpatient palliative care unit. He died there peacefully after 3 weeks, Ms L at his side. Nine months later, with gestation and rebirth in mind, Ms L and close family and friends held a formal unveiling of Mr M's grave marker. Excerpts of Ms L's correspondence with a Perspectives editor after Mr M's death are shared below. Dr D was re-interviewed by a Perspectives editor.

I miss him profoundly and am working hard to integrate the images and emotions of our relationship while raising [my son] and enjoying life in honor of one who loved it so absolutely. His father, a survivor from Auschwitz, supported him in whatever ways he was capable, and [sat] shiva and [said] Kaddish [the mourner's prayer] at the unveiling. Facing death together at such a young age was by far the most rigorous challenge we had ever encountered, and we had encountered many. The choices for coping and organizing [his] health care were limited, due in part to the fact that he had been on SSI [Supplemental Security Income] for 25 years. The reason he got the hospice he got was because of his coverage. It was also the reason we never married. These are political realities. What doctors don't know about the funding of care is part of what keeps them from having better control of the care their patients receive. "Hospice care center" sounded so remote. Quiet people tending with earnest touches. Having him home seemed worse. He was too sick for hospice [and] his narcotic needs too high. And so he stayed at the inpatient palliative care center, where the care was phenomenal. No medications were ever withheld despite his high tolerance. Visions of [his] dry tongue flicking forward and back in his open mouth, his short breath, come to me now. Wiping a small, wet, green sponge across the gape. When I took his pale, stiff body in my arms [and] whispered, ‘Go. I love you. Good-bye. I love you,' his last breath ended. It was everything we had done. It was like music ending.

He had been living at home with fairly consistent 24-hour home care—not so much arranged by me, but through his own friends. They had tried home hospice and that didn't really work out for him. We were getting more and more frequent calls in regards to various complications, urinary tract infections, which we were trying to treat as an outpatient. Finally, he ended up in the hospital. At the time he was originally hospitalized, he was still ‘full code.' The last time I spoke to him, he was still making plans for hospice . . . . I think towards the end, he was very accepting of the decision to take a comfort care approach. In terms of the vacillation, I think that's just the way things are for someone who is 47 years old—or young—and living with his illness for so long. It's not unrealistic to have his kind of equivocation about how he wanted his care to be maintained. He was very philosophical and spent a great deal of time thinking about his life and his illness, not just on a personal but almost on a metaphysical level. To a certain extent, I think that helped him, but to another extent it added an element of complexity to the situation.