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Developing a renal supportive care team from the voices of patients, families, and palliative care staff

Published online by Cambridge University Press:  23 May 2008

Joan Berzoff*
Affiliation:
Smith College School for Social Work, Northampton, Massachusetts
Jennifer Swantkowski
Affiliation:
Smith College School for Social Work, Northampton, Massachusetts
Lewis M. Cohen
Affiliation:
The Renal Palliative Care Initiative, Baystate Medical Center, Springfield, Massachusetts
*
Address correspondence and reprint requests to: Joan Berzoff, Smith College School for Social Work, Lilly Hall, Northampton, MA 01063; E-mail: jberzoff@email.smith.edu

Abstract

Objective:

Although half a million Americans suffer from end stage renal disease (ESRD), their quality of end-of-life care has been woefully inadequate. The Renal Supportive Care Team is a demonstration project that is designed to elicit and provide for the needs of dialysis patients and their families throughout the trajectory of their illnesses.

Method:

Six focus groups, including medical health professionals, dialysis patients, family members, and bereaved family members, discussed how to promote improved palliative care and encourage hospice referral for patients with ESRD.

Results:

Respondents agreed that there needed to be greater education of both patients and families regarding all aspects of the disease process, open communication, on-going support between patients, families, and the staff, continuity of care, pain control, and assistance with advance care planning.

Significance of results:

Palliative and supportive care issues in ESRD need greater attention.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2008

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References

REFERENCES

Anastas, J.W. & McDonald, M.L. (1994). Research Design for Social Work and the Human Services New York: Lexington Books.Google Scholar
Brick, N., Daniels, J., Jenkins, K., et al. (2005). Joint working with hospice teams: A renal collaborative approach. EDTNA/ERCA Journal, 31, 8892.Google ScholarPubMed
Cohen, L.M., Germain, M.J., Woods, A.L., et al. (2005). The family perspective of ESRD deaths. American Journal of Kidney Disease, 45, 154161.CrossRefGoogle ScholarPubMed
Cohen, L.M., Moss, A.H., Weisbord, S., et al. (2006). Renal palliative care. Journal of Palliative Medicine, 9, 977992.CrossRefGoogle ScholarPubMed
Davison, S.N. (2006). Facilitating advance care planning for patients with end-stage renal disease: The patient perspective. Clinical Journal of the American Society of Nephrology, 1, 10231028.CrossRefGoogle ScholarPubMed
Davison, S.N. & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: qualitative interview study. British Medical Journal, 333, 886. doi:10.1136/bmj.38965.626250.55.CrossRefGoogle ScholarPubMed
Davison, S.N. & Torgunrud, C. (2007). The creation of an advance care planning process for patients with ESRD. American Journal of Kidney Diseases, 49, 2736.CrossRefGoogle ScholarPubMed
End-Stage Renal Disease Peer Workgroup: Robert Wood Johnson Foundation Promoting Excellence in End-of-Life Care National Program. (2006). Available at http://www.promotingexcellence.org/content/workgroups.html.Google Scholar
Holley, J.L., Hines, S.C., Glover, J.J., et al. (1999). Failure of advance care planning to elicit patient's preferences for withdrawal from dialysis. American Journal of Kidney Diseases, 33, 688693.CrossRefGoogle ScholarPubMed
Holley, J.L., Nespor, S., & Rault, R. (1993). The effects of providing chronic hemodialysis patients with material on advance directives. American Journal of Kidney Disease, 22, 413418.CrossRefGoogle ScholarPubMed
Loftin, L.P. & Beumer, C. (1998). Collaborative end-of-life decision making in end stage renal disease. ANNA Journal, 25, 615618.Google ScholarPubMed
Perry, E., Swartz, J., Brown, S.L. et al. (2005). Peer mentoring: A culturally sensitive approach to end-of-life planning for long-term dialysis patients. American Journal of Kidney Diseases, 46, 111119.CrossRefGoogle ScholarPubMed
Perry, E., Swartz, J., Kelly, G. et al. (2003). Palliative care in chronic kidney disease: Peer mentoring program personalizes advance directives discussions. Nephrology News and Issues, 17(8), 2831.Google ScholarPubMed
U.S. Renal Data System. (2004). Annual Data Report (2004). Bethesda, MD: The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases.Google Scholar
U.S. Renal Data System (2005). Annual Data Report: Atlas of End-Stage Renal Disease in the United States Bethesda, MD: National Institutes of Health, National Institutes of Diabetes and Digestive and Kidney Diseases.Google Scholar