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Palliative care: End-stage renal disease

INTRODUCTION

An increasingly elderly 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 [9] and a United Kingdom Expert Consensus Group published guidelines for symptom management in adults dying with chronic kidney disease [10].

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 [11-14], it is likely that all nephrologists will be involved in end-of-life care of ESRD and chronic kidney disease (CKD) patients. As a group, however, physicians are poorly trained in palliative care and often feel uncomfortable with the care of dying patients [15,16]. 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 [16]. 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 [17,18]. (See "Withdrawal from and withholding of dialysis".)

Providing palliative care to patients with chronic kidney disease 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 [4,9,19-22]. 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 [23].

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 [24]. 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 [24]. Throughout the course of a serious illness, palliative care assumes an increasing priority over disease-directed care and eventually focuses upon the dying process.

            

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Literature review current through: Oct 2014. | This topic last updated: Nov 10, 2014.
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References
Top
  1. Moss AH, Holley JL, Davison SN, et al. Palliative care. Am J Kidney Dis 2004; 43:172.
  2. Levy JB, Chambers EJ, Brown EA. Supportive care for the renal patient. Nephrol Dial Transplant 2004; 19:1357.
  3. Kurella M, Covinsky KE, Collins AJ, Chertow GM. Octogenarians and nonagenarians starting dialysis in the United States. Ann Intern Med 2007; 146:177.
  4. Cohen LM, Moss AH, Weisbord SD, Germain MJ. Renal palliative care. J Palliat Med 2006; 9:977.
  5. Holley JL. Palliative care in end-stage renal disease: illness trajectories, communication, and hospice use. Adv Chronic Kidney Dis 2007; 14:402.
  6. Da Silva-Gane M, Wellsted D, Greenshields H, et al. Quality of life and survival in patients with advanced kidney failure managed conservatively or by dialysis. Clin J Am Soc Nephrol 2012; 7:2002.
  7. Vandecasteele SJ, Kurella Tamura M. A patient-centered vision of care for ESRD: dialysis as a bridging treatment or as a final destination? J Am Soc Nephrol 2014; 25:1647.
  8. O'Hare AM, Armistead N, Schrag WL, et al. Patient-Centered Care: An Opportunity to Accomplish the "Three Aims" of the National Quality Strategy in the Medicare ESRD Program. Clin J Am Soc Nephrol 2014.
  9. Renal Physicians Association Clinical Practice Guideline. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd ed, 2010.
  10. Douglas C, Murtagh FE, Chambers EJ, et al. Symptom management for the adult patient dying with advanced chronic kidney disease: a review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group. Palliat Med 2009; 23:103.
  11. Murtagh FE, Marsh JE, Donohoe P, et al. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant 2007; 22:1955.
  12. Carson RC, Juszczak M, Davenport A, Burns A. Is maximum conservative management an equivalent treatment option to dialysis for elderly patients with significant comorbid disease? Clin J Am Soc Nephrol 2009; 4:1611.
  13. Morton RL, Turner RM, Howard K, et al. Patients who plan for conservative care rather than dialysis: a national observational study in Australia. Am J Kidney Dis 2012; 59:419.
  14. Kurella Tamura M, Covinsky KE, Chertow GM, et al. Functional status of elderly adults before and after initiation of dialysis. N Engl J Med 2009; 361:1539.
  15. Holley JL, Carmody SS, Moss AH, et al. The need for end-of-life care training in nephrology: national survey results of nephrology fellows. Am J Kidney Dis 2003; 42:813.
  16. Davison SN, Jhangri GS, Holley JL, Moss AH. Nephrologists' reported preparedness for end-of-life decision-making. Clin J Am Soc Nephrol 2006; 1:1256.
  17. Shah HH, Monga D, Caperna A, Jhaveri KD. Palliative care experience of US adult nephrology fellows: a national survey. Ren Fail 2014; 36:39.
  18. Combs SA, Culp S, Matlock DD, et al. Update on End-of-Life Care Training During Nephrology Fellowship: A Cross-sectional National Survey of Fellows. Am J Kidney Dis 2014.
  19. Neely KJ, Roxe DM. Palliative care/hospice and the withdrawal of dialysis. J Palliat Med 2000; 3:57.
  20. Davison SN. End-of-life care preferences and needs: perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol 2010; 5:195.
  21. Jassal SV, Watson D. Doc, don't procrastinate...Rehabilitate, palliate, and advocate. Am J Kidney Dis 2010; 55:209.
  22. Cukor D, Kimmel PL. Education and end of life in chronic kidney disease: disparities in black and white. Clin J Am Soc Nephrol 2010; 5:163.
  23. Gunda S, Thomas M, Smith S. National survey of palliative care in end-stage renal disease in the UK. Nephrol Dial Transplant 2005; 20:392.
  24. Task force on Palliative care. Last acts: Precepts of palliative care, Stewart Communications, Ltd., Chicago, 1997.
  25. Murray AM, Arko C, Chen SC, et al. Use of hospice in the United States dialysis population. Clin J Am Soc Nephrol 2006; 1:1248.
  26. Davison SN. Facilitating advance care planning for patients with end-stage renal disease: the patient perspective. Clin J Am Soc Nephrol 2006; 1:1023.
  27. Holley JL. Advance care planning in CKD/ESRD: an evolving process. Clin J Am Soc Nephrol 2012; 7:1033.
  28. Holley JL, Hines SC, Glover JJ, et al. Failure of advance care planning to elicit patients' preferences for withdrawal from dialysis. Am J Kidney Dis 1999; 33:688.
  29. Singer PA, Martin DK, Lavery JV, et al. Reconceptualizing advance care planning from the patient's perspective. Arch Intern Med 1998; 158:879.
  30. Citko J, Moss AH, Carley M, Tolle S. The National POLST Paradigm Initiative, 2nd Edition #178. J Palliat Med 2011; 14:241.
  31. Kapron K, Perry E, Bowman T, Swartz RD. Peer resource consulting: redesigning a new future. Adv Ren Replace Ther 1997; 4:267.
  32. Berman E, Merz JF, Rudnick M, et al. Religiosity in a hemodialysis population and its relationship to satisfaction with medical care, satisfaction with life, and adherence. Am J Kidney Dis 2004; 44:488.
  33. Hemmelgarn BR, Manns BJ, Quan H, Ghali WA. Adapting the Charlson Comorbidity Index for use in patients with ESRD. Am J Kidney Dis 2003; 42:125.
  34. Moss AH, Ganjoo J, Sharma S, et al. Utility of the "surprise" question to identify dialysis patients with high mortality. Clin J Am Soc Nephrol 2008; 3:1379.
  35. Cohen LM, Ruthazer R, Moss AH, Germain MJ. Predicting six-month mortality for patients who are on maintenance hemodialysis. Clin J Am Soc Nephrol 2010; 5:72.
  36. Coalition for the supportive care of kidney patients http://www.kidneysupportivecare.org/.
  37. Song MK, Ward SE, Happ MB, et al. Randomized controlled trial of SPIRIT: an effective approach to preparing African-American dialysis patients and families for end of life. Res Nurs Health 2009; 32:260.
  38. Schell JO, Green JA, Tulsky JA, Arnold RM. Communication skills training for dialysis decision-making and end-of-life care in nephrology. Clin J Am Soc Nephrol 2013; 8:675.
  39. Schell JO, Cohen RA. A communication framework for dialysis decision-making for frail elderly patients. Clin J Am Soc Nephrol 2014; 9:2014.
  40. Cohen LM, Germain M, Poppel DM, et al. Dialysis discontinuation and palliative care. Am J Kidney Dis 2000; 36:140.
  41. Neu S, Kjellstrand CM. Stopping long-term dialysis. An empirical study of withdrawal of life-supporting treatment. N Engl J Med 1986; 314:14.
  42. Fissell RB, Bragg-Gresham JL, Lopes AA, et al. Factors associated with "do not resuscitate" orders and rates of withdrawal from hemodialysis in the international DOPPS. Kidney Int 2005; 68:1282.
  43. Soltys FG, Brookins M, Seney J. Why hospice? The case for ESRD patients and their families. ANNA J 1998; 25:619.
  44. Cohen LM, Germain MJ, Woods AL, et al. The family perspective of ESRD deaths. Am J Kidney Dis 2005; 45:154.
  45. Murtagh FE, Addington-Hall JM, Edmonds PM, et al. Symptoms in advanced renal disease: a cross-sectional survey of symptom prevalence in stage 5 chronic kidney disease managed without dialysis. J Palliat Med 2007; 10:1266.
  46. Davison SN. Pain in hemodialysis patients: prevalence, cause, severity, and management. Am J Kidney Dis 2003; 42:1239.
  47. Davison SN. The prevalence and management of chronic pain in end-stage renal disease. J Palliat Med 2007; 10:1277.
  48. Bailie GR, Mason NA, Bragg-Gresham JL, et al. Analgesic prescription patterns among hemodialysis patients in the DOPPS: potential for underprescription. Kidney Int 2004; 65:2419.
  49. Dean M. Opioids in renal failure and dialysis patients. J Pain Symptom Manage 2004; 28:497.
  50. Murtagh FE, Chai MO, Donohoe P, et al. The use of opioid analgesia in end-stage renal disease patients managed without dialysis: recommendations for practice. J Pain Palliat Care Pharmacother 2007; 21:5.
  51. Cohen MH, Anderson AJ, Krasnow SH, et al. Continuous intravenous infusion of morphine for severe dyspnea. South Med J 1991; 84:229.
  52. Barakzoy AS, Moss AH. Efficacy of the world health organization analgesic ladder to treat pain in end-stage renal disease. J Am Soc Nephrol 2006; 17:3198.
  53. Eibach U, Schaefer K. Support after discontinuation of dialysis--medical and ethical considerations. Nephrol Dial Transplant 1998; 13:1154.
  54. Grubbs V, Moss AH, Cohen LM, et al. A Palliative Approach to Dialysis Care: A Patient-Centered Transition to the End of Life. Clin J Am Soc Nephrol 2014.
  55. Aronoff, GR, Berns, JS, Brier, ME, et al. Drug prescribing in renal failure, 4th ed, American College of Physicians, Philadelphia, 1999.
  56. Ljutić D, Perković D, Rumboldt Z, et al. Comparison of ondansetron with metoclopramide in the symptomatic relief of uremia-induced nausea and vomiting. Kidney Blood Press Res 2002; 25:61.
  57. Churchill DN, Jassal SV. Dialysis: destination or journey. J Am Soc Nephrol 2014; 25:1609.