Out of the Comfort Zone

“The daughter is just desperate… I don't really understand why but she seems pretty insistent that she can't take him home and she thinks he's in pain. Would you be willing to come to the Emergency Department to see him, and see if you have any ideas?” Face-to-face, the patient is a physically restless older African American man with late-stage dementia. Although he might be in physical pain, he also appears to be in emotional pain. But unlike an assessment “total pain” through careful exploratory interview with other patients, he doesn't answer with more than sparse semicoherent words. He grimaces and calls out for help, but he can't say why. He looks as though he hasn't bathed recently, and really isn't eating much—his daughter brought him in because he seems to her to be in pain or distress, and because he has stopped eating and getting out of bed. Sometimes he's resistant to staff contact, and he's even arm wrestled a couple of them, but he isn't violent; still no one has been able to do more than a cursory physical examination. At home he's lost sleep and wake cycles, making his supportive care more challenging. In the emergency department, he is further deprived of sleep by the constant stimulation of the environment. His frail wife is overwhelmed; his daughter is emotionally exhausted, and is pleading for help to make her father more comfortable. The emergency department team has worked him up with laboratories and a head CT, and results are unrevealing. They certainly can't justify a medical admission and want to discharge him home—but even they recognize his discomfort and distress are unrelieved.

When I am out of my comfort zone, the Journal of Palliative Medicine is a dependable resource. The palliative care evidence base is grounded in decades of end-of-life care in hospice, and robust research on palliative care for patients with advanced cancer. After years of clinical practice, I am confident I have the knowledge and skills to help a patient and family in our hospice unit become comfortable and comforted during the dying experience. When I teach our Hospice & Palliative Medicine fellows, I can explain how to assess cancer pain—bone pain, visceral pain, and somatic pain—and help them use evidence to select medication and nonpharmacologic therapies.^1–3

But hospice and palliative care practice has expanded to address the suffering of patients and families facing many types of serious illnesses in diverse settings. As the mentioned story illustrates, pain management in late-stage dementia is outside the comfort zone of most physicians, and many palliative care clinicians. The setting—the emergency department—is increasingly recognized as a site for palliative care, yet the environment contrasts starkly with an inpatient hospice. ⁴ The pathophysiology of pain changes with the progression of Alzheimer's disease, as does language function. ⁵ Not surprisingly, carefully honed cancer pain assessment skills seem useless when attempting to understand the pain experience of someone with late-stage dementia. Assessment of pain in the context of dementia requires new skills—interpersonal approaches to permit physical examination and the ability to select and use dementia-specific pain assessment techniques.^6,7 Even before Alzheimer's disease becomes advanced or end-stage, 66% of family caregivers prefer comfort as the primary goal of health care. ⁸ Yet despite this preference, treatment orders are poorly matched to this goal. ⁹ Dementia palliative care research is just now expanding to test interventions—and we still have much to learn about how to bring true comfort to these extremely distressed patients and families.^10–12

This issue of the journal addresses some of the new populations and settings we must understand to extend palliative care to all persons with serious illness. First, this issue highlights gaps in our evidence base for practice in the report of a Delphi survey of palliative care research priorities in Australia. Tabibian and colleagues describe how early palliative care involvement in the neurologic intensive care unit has led to improvements in decision making and symptom management for these patients. Analyzing data from decedents enrolled in the National Health and Aging Trends Study, Kricke reports on factors that improve the quality of dying for patients with multiple chronic conditions, and no single determinative terminal illness. This analysis finds that care coordination, communication, respect, and spiritual support are predictive of ratings of good care near death—but that symptom management is not. Findings suggest that an interpersonal and social model of palliative care may optimize care for this frail and medically complex group of patients. And an intriguing report of POLST use in Oregon shows earlier use of this advance directive tool, with resulting increases in orders for life-prolonging treatments. Findings have raised concerns that tube feeding might be applied in conditions when it is clearly ineffective. ¹³ Careful study of these trends has resulted in state policy change, removing orders regarding artificial nutrition from the Oregon POLST.

Our palliative care team is being called to witness and relieve new forms of suffering. We are being pulled out of the comfort zone, into novel settings such as specialty intensive care units, noisy emergency departments, homes, and assisted living centers. Many of our patients have advanced cancer, but many more have neurologic diseases, organ failure, or multiple chronic conditions with no definitive diagnosis progressing toward death. The only way to ensure comfort for our patients—and to find our new comfort zone—is to value and use clinical research.