Palliative care: End-stage renal disease
- Jean L Holley, MD, FACP
Jean L Holley, MD, FACP
- Clinical Professor of Medicine
- University of Illinois, Urbana-Champaign
- Section Editors
- Jeffrey S Berns, MD
Jeffrey S Berns, MD
- Editor-in-Chief — Nephrology
- Section Editor — Dialysis
- Professor of Medicine
- Perelman School of Medicine at the University of Pennsylvania
- R Sean Morrison, MD
R Sean Morrison, MD
- Section Editor — Selected End Stage Conditions
- Hermann Merkin Professor of Palliative Care
- Mount Sinai School of Medicine
An increasingly older end-stage renal disease (ESRD) population, particularly in the United States, requires nephrologists to focus upon issues relating to palliative care [1-8]. The Renal Physicians Association (RPA), for example, sponsored an evidence-based guideline relating to withholding and withdrawing from dialysis , and a United Kingdom Expert Consensus Group published guidelines for symptom management in adults dying with chronic kidney disease (CKD) . Kidney Disease: Improving Global Outcomes (KDIGO) sponsored a workgroup on the topic of palliative or supportive care in CKD outlining the need for additional study and the initiation of palliative treatments .
Since nearly 20 percent of dialysis patients stop dialysis prior to death and, increasingly, older patients are choosing not to begin dialysis in part due to poor outcomes and decreasing functional status with dialysis [12-16], it is likely that all nephrologists will be involved in end-of-life care of ESRD and CKD patients. As a group, however, physicians are poorly trained in palliative care and often feel uncomfortable with the care of dying patients [17,18]. In one survey of American and Canadian physicians, for example, only approximately 40 percent of 360 nephrologists stated that they were very well prepared to make end-of-life decisions . Despite the identification of the importance of palliative care in ESRD care, nephrology fellows remain uncomfortable and poorly trained in these aspects of clinical care [19,20]. (See "Withdrawal from and withholding of dialysis".)
Providing palliative care to patients with CKD begins at the time of diagnosis and continues throughout the patient's life. With progression of kidney disease, palliative care assumes increasing importance with time and is integral to "good deaths." Dialysis unit staff should be involved in such care and also must recognize their responsibilities in the areas of advance care planning, pain and symptom management, and bereavement support [4,9,21-24]. A national survey of palliative care in the United Kingdom again demonstrated opportunities to improve this aspect of ESRD care and prompted the authors to suggest guidelines for renal palliative care initiatives .
This topic review will discuss aspects of care that typically require attention in the patient who withdraws from dialysis or chooses not to initiate dialysis. Principles of palliative care will be addressed, as well as guidelines for the use of analgesia in these patients.
PRINCIPLES OF PALLIATIVE CARE
Palliative care refers to the comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients and families in the setting of serious illness . The goal of palliative care is to achieve the best possible quality of life by relieving suffering, controlling symptoms, and restoring functional capacity, while maintaining sensitivity to personal, cultural, and spiritual beliefs and practices . Throughout the course of a serious illness, palliative care assumes an increasing priority over disease-directed care and eventually focuses upon the dying process. The term "supportive care" is replacing the term "palliative care," in part to distinguish this kind of care from end-of-life care and because the term "supportive" may be more meaningful to patients and families . Both terms will be used in this topic review.
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- PRINCIPLES OF PALLIATIVE CARE
- Quality-of-life assessment
- Advance directives
- Symptom control after dialysis discontinuation
- - Pain
- - Constipation
- - Myoclonus, muscle twitching, and seizures
- - Hypervolemia
- - Other symptoms including nausea, vomiting, and delirium
- Post-death assessment and bereavement care
- Developing a patient-centered approach
- SUMMARY AND RECOMMENDATIONS