Palliative Care in End-Stage Renal Disease: Illness Trajectories, Communication, and Hospice Use

  • Jean L. Holley
    Address correspondence to Jean L. Holley, MD, Department of Medicine, University of Illinois, Urbana-Champaign, and Carle Clinic, 602 W. University Avenue, Urbana, IL 61801.
    Department of Medicine, University of Illinois, Urbana-Champaign, and Carle Clinic, Urbana, IL.
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      Palliative care is comprehensive, interdisciplinary care focusing on pain and symptom management, advance-care planning and communication, psychosocial and spiritual support, and, in end-stage renal disease (ESRD), the ethical issues in dialysis decision making. End-of-life care is one aspect of palliative care and incorporates all of the previously mentioned components as well as hospice and bereavement care. ESRD patients and their families are appropriate candidates for palliative care because of their high symptom burden, shortened survival, and significant comorbidity. The usual pattern of illness trajectory in ESRD is a progressive decline punctuated by episodes of acute deterioration prompted by sentinel events like limb amputation or myocardial infarction. Such events provide opportunities for advance-care planning and communication between providers and patients and families. Although communication is an integral component of palliative care, little is understood about effective provider-patient communication, especially in estimating and discussing prognosis. Palliative care has much to offer toward improving the quality of dialysis patients’ lives as well as planning for and improving the quality of their deaths. The palliative care issues of illness trajectory, communication, and hospice use among ESRD patients will be reviewed.

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        • Glaser B.
        • Strauss A.L.
        Time for Dying.
        Aldine Publishing Co, Chicago, IL1968
        • Lunney J.R.
        • Lynn J.
        • Hogan C.
        Profiles of older Medicare decedents.
        J Am Geriatr Soc. 2002; 50: 1108-1112
        • Lunney J.R.
        • Lynn J.
        • Foley D.J.
        • et al.
        Patterns of functional decline at the end of life.
        JAMA. 2003; 289: 2387-2392
        • Murray S.A.
        • Kendall M.
        • Boyd K.
        • et al.
        Illness trajectories and palliative care.
        Br Med J. 2005; 330: 1007-1011
        • Herzog C.A.
        • Ma J.Z.
        • Collins A.J.
        Poor long-term survival after acute myocardial infarction among patients on long-term dialysis.
        N Engl J Med. 1998; 339: 799-805
        • Eggers P.W.
        • Gohdes D.
        • Pugh J.A.
        Nontraumatic lower extremity amputations in the Medicare ESRD population.
        Kidney Int. 1999; 56: 1524-1533
        • Renal Physician Association
        • American Society of Nephrology
        Shared Decision-Making in the Appropriate Initiation and Withdrawal of Dialysis: Clinical Practice Guideline 2.
        Renal Physicians Association, Washington, DC2000
        • Moss A.H.
        • Holley J.L.
        • Davison S.N.
        • et al.
        Core curriculum in nephrology: Palliative care.
        Am J Kidney Dis. 2004; 43: 172-185
      1. Chambers E.J. Germain M. Brown E. Supportive Care for the Renal Patient. Oxford University Press, Oxford, England2004
        • Weisbord S.D.
        • Fried L.F.
        • Arnold R.M.
        • et al.
        Prevalence, severity, and importance of physical and emotional symptoms in chronic hemodialysis patients.
        J Am Soc Nephrol. 2005; 16: 2487-2494
        • Davison S.N.
        • Jhangri G.S.
        • Johnson J.A.
        Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: A simple assessment of symptom burden.
        Kidney Int. 2006; 68: 1621-1625
        • U.S. Renal Data System
        • National Institutes of Health
        • National Institute of Diabetes and Digestive and Kidney Diseases
        U.S. Renal Data System. USRDS 2005. 2005 Annual Report: Atlas of End-Stage Renal Disease in the United States.
        2005 (Bethesda, MD)
        • Davison S.N.
        • Jhangri G.S.
        • Holley J.L.
        • et al.
        Nephrologists’ comfort with end-of-life decision-making.
        Clin J Am Soc Nephrol. 2006; 1: 1256-1262
        • Holley J.L.
        • Carmody S.S.
        • Moss A.H.
        • et al.
        The need for end-of-life training in nephrology: National survey results of nephrology fellows.
        Am J Kidney Dis. 2003; 42: 813-820
        • Holley J.L.
        Palliative care in end-stage renal disease: Focus on advance care planning, hospice referral, and bereavement.
        Semin Dial. 2005; 18: 154-156
        • Hines S.C.
        • Glover J.J.
        • Holley J.L.
        • et al.
        Dialysis patients’ preferences for family-based advance care planning.
        Ann Intern Med. 1999; 130: 825-828
        • Holley J.L.
        • Hines S.C.
        • Glover J.J.
        • et al.
        Failure of advance care planning to elicit patients’ preferences for withdrawal from dialysis.
        Am J Kidney Dis. 1999; 33: 688-693
        • Singer P.A.
        Advance care planning in dialysis.
        Am J Kidney Dis. 1999; 33: 980-991
        • Tulsky J.A.
        Interventions to enhance communication among patients, providers, and families.
        J Palliat Med. 2005; 8: S95-S102
        • Weiner J.S.
        • Roth J.
        Avoiding iatrogenic harm to patient and family while discussing goals of care near the end of life.
        J Palliat Med. 2006; 9: 451-461
        • Fine A.
        • Fontaine B.
        • Kraushar M.M.
        • et al.
        Nephrologists should voluntarily divulge survival data to potential dialysis patients: A questionnaire study.
        Perit Dial Int. 2005; 25: 269-273
        • Chennupati S.
        • Abo-Kamil T.
        • Cubitt A.
        • et al.
        Actual versus perceived prognosis of hemodialysis patients.
        J Am Soc Nephrol. 2005; 16: 114A-115A
        • Michel D.M.
        • Moss A.H.
        Communicating prognosis in the dialysis consent process: A patient-centered, guideline approach.
        Adv Chronic Kidney Dis. 2005; 12: 196-201
        • Davison S.N.
        • Simpson C.
        Hope and advance care planning in patients with end stage renal disease: Qualitative interview study.
        Br Med J. 2006; 333: 886
        • SUPPORT Principal Investigators
        A controlled trial to improve care for seriously ill hospitalized patients.
        JAMA. 1995; 274: 1591-1598
        • Weiner J.S.
        • Arnold R.M.
        • Curtis J.R.
        • et al.
        Manualized communication interventions to enhance palliative care research and training: Rigorous, testable approaches.
        J Palliat Med. 2006; 9: 371-381
        • Quill T.E.
        Initiating end-of-life discussion with seriously ill patients: Addressing the “elephant in the room”.
        JAMA. 2000; 284: 2502-2507
        • Hijazi F.
        • Holley J.L.
        Cardiopulmonary resuscitation and dialysis: Outcome and patients’ views.
        Semin Dial. 2003; 16: 51-53
        • Perry E.
        • Swartz R.
        • Smith-Wheelock L.
        • et al.
        Why is it difficult for staff to discuss advance directives with chronic dialysis patients?.
        J Am Soc Nephrol. 1996; 7: 2160-2168
        • Levinson W.
        • Cohen M.S.
        • Brady D.
        • et al.
        To change or not to change: “Sounds like you have a dilemma”.
        Ann Intern Med. 2001; 135: 386-391
        • Lynn J.
        • Goldstein N.E.
        Advance care planning for fatal chronic illness: Avoiding commonplace errors and unwarranted suffering.
        Ann Intern Med. 2003; 138: 812-818
        • Neu S.
        • Kjellstrand C.M.
        Stopping long-term dialysis: An empirical study of withdrawal of life-supporting treatment.
        N Engl J Med. 1986; 314: 14-20
        • Murray A.M.
        • Arko C.
        • Chen S.-C.
        • et al.
        Use of hospice in the United States dialysis population.
        Clin J Am Soc Nephrol. 2006; 1: 1248-1255
        • Holley J.L.
        A single center review of the death notification form: Discontinuing dialysis prior to death is not a surrogate for withdrawal from dialysis.
        Am J Kidney Dis. 2002; 40: 525-530
        • Cohen L.M.
        • Germain M.
        • Poppel D.M.
        • et al.
        Dialysis discontinuation and palliative care.
        Am J Kidney Dis. 2000; 36: 140-144
        • Cohen L.M.
        • Moss A.H.
        • Weisbord S.D.
        • et al.
        Renal palliative care.
        J Palliat Med. 2006; 9: 977-992