Two recent studies show that caring for patients at the end of life is difficult for patients, families, and clinicians alike.
The first study surveyed 472 nurses working in pediatric ICUs (PICUs) to find out what they perceived to be the greatest obstacles to providing good end-of-life care. (The study also sought examples of what the respondents believed to be their most supportive practices.)
Not surprisingly, language and communication problems were considered the biggest and most frequently encountered barrier. Such problems include not knowing the patient's language or having a translator on hand, as well as a physician's inability to communicate end-of-life issues clearly. The nurses also named parents' reluctance to withdraw life support and a lack of communication among interdisciplinary team members as significant barriers to achieving a "good death." Many nurses commented on the need for early recognition of a child's likely death, rather than waiting for a child's condition to decline dramatically before starting palliative care. The authors suggest that overcoming these barriers could increase the likelihood of more deaths occurring at home in peaceful surroundings instead of in PICUs.
According to the second study, patients with advanced chronic kidney disease also receive inadequate end-of-life care. A total of 584 patients at a university-based dialysis clinic were asked about end-of-life issues. Approximately 85% said they wanted information on treatment options, including stopping dialysis, pain management, and planning for death. More than half wanted their nephrology team to provide end-of-life social and emotional support, yet 90% hadn't discussed these issues with their nephrologists, and most didn't know what palliative care was; only half knew what hospice was. Nearly two-thirds of patients regretted their decision to start dialysis, 52% said it was their physician's wish and 14% said it was their family's wish; only 34% said they had wanted to start dialysis themselves. The authors hope their study will be a "first step in identifying gaps between current end-of-life care and patients' preferences" and guide future "innovation in renal end-of-life care policy."
Carol Potera