This report describes the need for palliative care in the ESRD population and presents the methods, findings, recommendations, and products of the Promoting Excellence ESRD Workgroup.
Most patients with end-stage renal disease, especially those who are not candidates for renal transplantation, have a significantly shortened life expectancy. In the United States, dialysis patients live about one-third as long as non-dialysis patients of the same age and gender. The unadjusted five-year probability of survival for all incident ESRD patients on dialysis is only 39%; and for the 48% of incident ESRD patients who are 65 years of age or older, it is only 18%. Forty-five percent of new ESRD patients have diabetes. Life expectancy is also shortened by comorbid conditions, including hypertension, congestive heart failure, ischemic heart disease, and peripheral vascular disease.
According to the United States Renal Data System (USRDS) 2001 Report, over 65,000 ESRD patients die each year. The unadjusted annual death rate for ESRD patients in recent years has ranged between 20 and 22%. For some 20% of these patients, death comes after a decision to discontinue dialysis. An increasing number of patients who initiate renal replacement therapy are elderly. Based on data from the USRDS for 1993 to 1998, the highest incident treatment rates were for patients 65 years and older, with the very highest rates for patients 75-79 and 80-84 years old. Older patients have the most comorbid conditions and are at the greatest risk for developing illnesses during their subsequent course on dialysis. Older patients are also the most likely to stop dialysis.
It is clear from the foregoing information that the care of ESRD patients requires expertise not only in the medical and technical aspects of maintaining patients on dialysis, but also in palliative care - encompassing pain and symptom management, advance care planning, and attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis.
At its first meeting on March 27-28, 2000, the ESRD Peer Workgroup divided into three subgroups: quality of life, quality of dying, and education.
The Quality of Life (QOL) subgroup addressed the burdens ESRD patients face in living with a grave, life-shortening chronic illness while also taking advantage of the life-sustaining technology of dialysis. Discordance lies at the heart of ESRD patients’ struggle for quality of life. On the one hand, dialysis creates hopeful expectations in them, their families, and their caregivers. On the other hand, at least initially, patients and families may not grasp that comorbidities and reduced life expectancy are a common aspect of ESRD. Clinicians may not have been candid about the life-limiting nature of the disease and accompanying comorbid conditions.
The Quality of Dying subgroup was created because anecdotal information and several studies suggest that the quality of the experience of dying could be enhanced for dialysis patients. Although there is a paucity of literature addressing this topic, both anecdotes and studies point to the following factors as possible contributors: inadequate treatment of pain and other symptoms; emotional stress on patient and family; insufficient attention to family dynamics, patient/family education about end-of-life care and advance care planning; and failure to address issues of religion, race, and cultural diversity as they relate to life completion and closure. The subgroup sought to better understand (1) the dimensions of quality with respect to dying, as perceived by ESRD patients, families, and caregivers; (2) the obstacles to quality; and (3) interventions that could significantly improve end-of-life care for people with ESRD.
The Education subgroup reflected the workgroup’s belief that lack of knowledge about palliative care is a key barrier to change in the dialysis community. Knowledge about palliative care is perceived to be very limited among nephrologists, trainees, and dialysis staff as well as patients and their families. Beyond a lack of specific knowledge, an apparent culture of “death denial” in dialysis units needs to be addressed.
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