As hospital-based palliative care programs continue to grow, palliative care specialists are eager to dispel misconceptions about their work.1 Quality palliative care management at the end of life is often mistakenly perceived as synonymous with adequate pain control, but controlling pain is just one of the facets of effectively moderating the intensity of patients’ and families’ suffering.
The cases narrated here illustrate some of the other common themes of good palliative care management at the end of life: aggressive symptom management, interdisciplinary teamwork, and attention to patients’ and families’ spiritual concerns. Active, respectful listening can help to identify and alleviate obstacles to a more humane end-of-life journey.
Time to Process the Big Picture
State-of-the-art medical therapy does not always address dying patients’ suffering, says Melissa Mahoney, MD, assistant professor of medicine at Emory University and co-director of the Palliative Care Consult Service at Emory Crawford Long Hospital in Atlanta. She experienced this firsthand with a request to consult with a 60-year-old woman who had been in and out of sub-acute rehabilitation facilities seeking pain relief for her spinal stenosis. During a recent rehab facility stay, she had become septic and was transferred to the hospital for dialysis and other treatments. When Dr. Mahoney met the patient, the woman had been saying that she wanted to die, and her family was supportive of her wishes.
During her first conversation with the patient, however, Dr. Mahoney was able to discern that when she said she wanted to die, the patient meant, “I’m in so much pain that I don’t want to live this way.” The first step for the palliative care team was to begin patient-controlled analgesia (PCA) with IV hydromorphone hydrochloride in an attempt to control her pain. The PCA worked—dramatically.
“The next day,” recalls Dr. Mahoney, “she was like a new person. She was able to cope with the idea of dialysis and was able to talk with her family and put things in perspective.”
The palliative care team followed the woman for months, as she continued a cycle of readmissions to both the sub-acute facility and the hospital. The difference from the previous scenario, however, was that the team could offer aggressive symptom management while encouraging the patient and her family to revisit quality of life issues. She eventually died in the hospital, but Dr. Mahoney believes that the palliative care team’s interventions and emphasis on communication helped the patient and her family to cope with the situation more effectively.