American Journal of Kidney Diseases
Volume 45, Issue 1 , Pages 154-161 , January 2005

The family perspective of ESRD deaths

  • Lewis M. Cohen, MD

      Affiliations

    • Department of Psychiatry, Baystate Medical Center, Springfield, MA USA
    • Corresponding Author InformationAddress reprint requests to Lewis Cohen, MD, Baystate Medical Center, 759 Chestnut St, Springfield, MA 01199.
    • ,
  • Michael J. Germain, MD

      Affiliations

    • Western New England Renal and Transplant Associates, Springfield, MA
    • ,
  • Anne L. Woods, LICSW

      Affiliations

    • Transplant Division, Baystate Medical Center, Springfield, MA
    • ,
  • Adam Mirot, MD

      Affiliations

    • Department of Psychiatry, Baystate Medical Center, Springfield, MA USA
    • ,
  • Joseph A. Burleson, PhD

      Affiliations

    • Department of Community Medicine and Health Care, School of Medicine, University of Connecticut Health Center, Farmington, CT.

Received 5 May 2004 ,Accepted 16 September 2004.

References 

  1. Zabetakis PM , Sasak C , Callahan C , et al.   Improving clinical outcomes through internal benchmarking and quality targets . Dial Transplant . 2000;29:130–135
  2. Longenecker JC , Coresh J , Klag MJ , et al.   Validation of comorbid conditions on the end-stage renal disease medical evidence report (The CHOICE study) . J Am Soc Nephrol . 2000;11:520–529
  3. Rocco MV , Yan G , Gassman J , et al.   Comparison of causes of death using HEMO Study and HCFA end-stage renal disease death notification classification systems . Am J Kidney Dis . 2002;39:146–153
  4. Holley JL . A single-center review of the death notification form (Discontinuing dialysis before death is not a surrogate for withdrawal from dialysis) . Am J Kidney Dis . 2002;40:525–530
  5. Cohen LM , Germain MJ . Palliative and supportive care . In:  Brady HR ,  Wilcox CS editor. Therapy of Nephrology and Hypertension (A Companion to Brenner’s The Kidney) . (ed 2). Philadelphia, PA: Elsevier Science; 2003;p. 753–756
  6. Singer PA , MacDonald N . Bioethics for clinicians (15 Quality end-of-life care) . CMAJ . 1998;159:159–162
  7. Teno JM , Byock I , Field MJ . Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness . J Pain Symptom Manage . 1999;17:75–82
  8. Byock I . The nature of suffering and the nature of opportunity at the end of life . Clin Geriatr Med . 1996;12:237–252
  9. Bowman KW , Singer PA . End-of-life care in dialysis . In:  Levinsky NG editors. Ethics and the Kidney . New York, NY: Oxford University Press; 2001;p. 110–120
  10. Lynn J , Ten JM , Phillips RS , et al.   Perceptions by family members of the dying experience of older and seriously ill patients . Ann Intern Med . 1997;126:97–106
  11. Teno JM , Clarridge BR , Casey V , et al.   Family perspectives on end-of-life care at the last place of care . JAMA . 2004;291:88–93
  12. US Renal Data System, USRDS 2002 Annual Data Report . In: Atlas of End-Stage Renal Disease in the United States . Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2002;
  13. Ries LA, Eisner MP, Kosary CL, et al (eds): SEER Cancer Statistics Review, 1973–1999. Bethesda, MD, National Cancer Institute. Available at: http://seer.cancer.gov/csr/1973_1999/,2002. Accessed: March 16, 2004
  14. 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;42:813–820
  15. Moss AH , Holley JL , Davison SN , et al.   Palliative care . Am J Kidney Dis . 2004;43:172–185
  16. Weisbord SD , Carmody SS , Bruns FJ , et al.   Symptom burden, quality of life, advance care planning and the potential value of palliative care in severely ill haemodialysis patients . Nephrol Dial Transplant . 2003;18:1345–1352
  17. Chang VT , Hwang SS , Feuerman M , Kasimis BS , Thaler HT . The memorial symptom assessment scale short form (MSAS-SF) . Cancer . 2000;89:1162–1171
  18. Woods A , Berzoff J , Cohen LM , et al.   The family perspective of end-of-life care in end-stage renal disease (The role of the social worker) . J Nephrol Social Work . 1999;19:9–21
  19. Cohen LM , McCue JD , Germain M , Kjellstrand CM . Dialysis discontinuation (A “good” death?) . Arch Intern Med . 1995;155:42–47
  20. Cohen LM , Germain M , Poppel DM , Woods A , Kjellstrand CM . Dialysis discontinuation and palliative care . Am J Kidney Dis . 2000;36:140–144
  21. Cohen LM , Germain M , Poppel DM , Pekow PS , Woods A , Kjellstrand CM . Dying well after discontinuing the life-support treatment of dialysis . Arch Intern Med . 2000;160:2513–2518
  22. Brown Medical School, Providence, RI, Center for Gerontology and Health Care Research. TIME: Toolkit of Instruments to Measure End-of-life Care. Brown University Center for Gerontology and Health Care Research website. Available at: http://www.chcr.brown.edu/pcoc/toolkit.htm. Accessed: April 28, 2004
  23. Braveman C , Cohen LM . Discontinuation of dialysis (The role of hospice and palliative care) . AAHPM Bulletin . 2002;3(1):16–17
  24. Wilson PR . Ethics of analgesia . Clin J Pain . 1993;9:157–158
  25. Kurella M , Bennett WM , Chertow GM . Analgesia in patients with ESRD (A review of available evidence) . Am J Kidney Dis . 2003;42:217–228
  26. Fowler FJ , Coppola KM , Teno JM . Methodological challenges for measuring quality of care at the end of life . J Pain Symptom Manage . 1999;17:114–119
  27. Cohen LM , Germain MJ . Measuring quality of dying in End-Stage Renal Disease . Semin Dial . 2004;17:389–392
  28. Desbiens NA , Wu AW , Broste SK , Wenger NS , et al.   Pain and satisfaction with pain control in seriously ill hospitalized adults (Findings from the SUPPORT research inestigations) . Crit Care Med . 1996;24:1953–1961
  29. Sprangers MA , Aaronson NK . The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease (A review) . J Clin Epidemiol . 1992;45:743–760
  30. Emanuel EJ . Care for dying patients . Lancet . 1997;349:1714
  31. Cohen LM . Suicide, hastening death, and psychiatry . Arch Intern Med . 1998;158:1973–1976

 Supported by The Robert Wood Johnson Foundation.

PII: S0272-6386(04)01313-7

doi: 10.1053/j.ajkd.2004.09.014

American Journal of Kidney Diseases
Volume 45, Issue 1 , Pages 154-161 , January 2005

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