Delivering Palliative Care to End-Stage Renal Disease Patients

1. Delivering Palliative Careto End-Stage Renal Disease Patients Alvin H. Moss, MD Center for Health Ethics and Law Section of Nephrology West Virginia University

2. Objectives At the completion of this call, participants should be able to: • Describe the special relevance of end-of-life care for chronic kidney failure patients ; • Explain the barriers to making end-of-life care more available to chronic kidney disease patients; and • Discuss the recommendations of the Robert Wood Johnson Foundation Promoting Excellence ESRD Peer Work for improving end-of-life care for dialysis patients.

3. ESRD End-of-Life Demographics • Rising median age of dialysis population 48% > 65 yrs old • Over 72,000 dialysis patients die per year • ~20% die after decision to withdraw • High percentage with comorbidities • High in-hospital death (61% in one study) • Unknown but low % die with hospice

4. ESRD Peer Work Groupof Robert Wood Johnson Foundation “Most patients with ESRD, especially those who are not candidates for renal transplantation, have a significantly shortened life expectancy.”

5. Expected Remaining Years of Life For 1996 Dialysis Populations

6. ESRD Patient Probability of Survival USRDS, 2002 Annual Data Report

7. USRDS 1995 -- Life Expectancy Among Selected Chronic Diseases

8. Expected remaining lifetimes in patients with increasing morbidity, by age figure 9.25, chronic kidney disease & diabetes, prevalent dialysis patients, 2000

9. Frequency of Death in Dialysis Units • Average of 17 deaths per dialysis unit/yr • 78% of units withdrew at least 1 patient (1990) • Mean # withdrawn: 3 (0-20) • Most nephrologists withdraw at least one patient/yr • Mean # withdrawn/nephrologist/yr: 3 (0-10) (1995)

10. Reasons for Withdrawal • Unacceptable quality of life (failure to thrive) • Acute complication • Dementia • Stroke • Cancer • Other

11. Symptoms during Last 24 HoursN=79 Cohen et al. AJKD, 2000;36:140-144

12. Barriers • Lack of education, especially of nephrologists • Unwillingness of dialysis corporations to respect dialysis patients’ preference for DNR order • Patient/family denial of permanent nature of ESRD • Lack of patient awareness of life-limiting nature of ESRD resulting in many not wanting to discuss end-of-life issues

13. RPA/ASN Statement on Quality Care at the End of Life 6. Nephrologists should explicitly include in their advance care planning…information about the outcomes of CPR for patients with ESRD and a discussion of patients’ preferences regarding CPR if cardiac arrest were to occur while patients are undergoing …dialysis… The RPA/ASN encourages dialysis facilities to develop policies and procedures for respecting the wishes of dialysis patients with regard to CPR in … the dialysis unit.

14. Robert Wood Johnson Foundation ESRD Peer Workgroup Recommendations to the Field

15. Methodology of the Education Subgroup • A review of the literature, including identification of articles, book chapters, and the extensive evidenced-based literature search by the RPA/ASN committee that drafted “Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis;” • Consensus among the group based on expert opinion; • Informal surveys of nephrology colleagues and of the nephrology training programs; and

16. Findings of the Education Subgroup • A lack of ESRD specific books or chapters on palliative care • A gap in the curriculum for nephrology training programs • A culture of denial in dialysis units among nephrologists, staff, patients and families • The need for a modification of the EPEC program for nephrologists

17. Survey Results Second Year Nephrology Fellows Assessment of Medical Education in End-of-Life Care Survey conducted April 2002 173 fellows participated 63% response rate

18. DemographicsNephrology fellows compared to other specialties

19. Exposure to Palliative Care

20. Teaching and Preparedness of Nephrology Fellowsto manage Patients on dialysis, with RTA, and at the end-of-life Hemodialysis Distal RTA End-of-Life Care 0 = no teaching or completely unprepared, 10 = a lot of teaching or completely prepared

21. Figure 2 During your fellowship, were you explicitly taught to:

22. Comparison of Experience of Nephrology FellowsRenal Biopsies Performed with Observation versus Family Meetings Renal Biopsies Performed Family Meetings Conducted

24. Renal EPEC • Why Talk about End-of-Life Care in ESRD • Communicating Bad News • Advance Care Planning • Pain Management • Common Physical Symptoms • Incorporating End-of-Life Care into Your Dialysis Unit

25. Alvin H. Moss, MD, Chair Barbara Campbell, MSW Lewis M. Cohen, MD William R. Coleman, Esq. Helen Danko, RN, CNN Richard Dart, MD Lesley Dinwiddie, MSN, RN Michael Germain, MD Cathy Greenquist, RN Jean Holley, MD Paul Kimmel, MD Karren King, MSW Jenny Kitsen Lori Lambert, MS, RD, CDE John E. Leggat, Jr., MD Sharon McCarthy, RN, FNP John Newmann, PhD, MPH Marilyn Pattison, MD Erica Perry, MSW Susan Pfettscher, DNSc, RN David Poppel, MD, M. Abed Sekkarie, MD Dale Singer, MHA Richard Swartz, MD ESRD Peer Workgroup

26. Recommendations from the ESRD Peer Workgroup Centers for Medicare and Medicaid Services • Governmental policy makers should update "Conditions of Participation" for dialysis units to include requirements for advance care planning and the provision of palliative care. • CMS should collect data on hospice utilization on the 2746 form.

27. Recommendations from the ESRD Peer Workgroup Centers for Medicare and Medicaid Services • Allow application of Medicare hospice benefit to ESRD patients certified to be terminally ill but who choose to continue dialysis • Improve coordination and linkage of dialysis and hospice care for ESRD patients

28. Recommendations from the ESRD Peer Workgroup Dialysis Units • Dialysis units should educate patients/families about end-of-life care. • Dialysis units should institute palliative care programs that include pain and symptom management, advance care planning, and psychosocial and spiritual support for patients and families. • Dialysis units should adopt policies regarding CPR in the dialysis unit that respect patients’ rights of self-determination, including the right to refuse CPR.

29. Recommendations from the ESRD Peer Workgroup Dialysis Units • Dialysis units should support the development of peer mentoring in their facilities. • Dialysis units should implement bereavement programs.

30. Recommendations from the ESRD Peer Workgroup Nephrology health care professionals • Nephrologists and other members of the renal care team should refer dying ESRD patients to hospice and/or adopt a palliative care approach to their management.

31. Robert Wood Johnson FoundationESRD Peer Workgroup Report www.promotingexcellence.org/esrd/

32. Conclusions • Because of shortened life expectancy, end-of-life care is particularly relevant for ESRD pts. • The knowledge and skills to provide palliative care for ESRD patients are available but not in widespread use. • The recommendations in the RWJF ESRD Workgroup report provide a “road map” for improving end-of-life care for ESRD patients.

33. Take-Home Message Because of the nature of ESRD, end-of-life care needs to be part of the continuum of quality patient care for ESRD patients.