Why the Nephrology Community Should Care about End-of-Life Care

1. Why the Nephrology Community Should Care about End-of-Life Care Alvin H. Moss, MD Center for Health Ethics and Law Section of Nephrology West Virginia University

2. A Role for Palliative Care The patient is a 56 year old female with ESRD from Type I DM who was admitted from the NH with altered mental status occurring over the preceding 24 hours. The patient has been on dialysis for three years and is transported by ambulance for her treatments. Her other medical problems include retinopathy with limited vision, CVA with left hemiplegia, and peripheral vascular disease with bilateral LE amputations.

3. A Role for Palliative Care She is incontinent of urine and has severe difficulties with constipation. She is unable to walk or transfer herself from chair to stretcher. The patient is noncompliant with diet and meds. Her serum albumin is 2.2. She is listed as a full code. The patient sometimes cries during hemodialysis treatments, especially when asked questions. She admits she is depressed. Her memory is relatively good but she has problems with expressive aphasia, and her behavior during dialysis treatments is sometimes inappropriate.

4. A Role for Palliative Care The patient had been in the hospital one week earlier for a cholecystectomy. On this admission, an MRI of the brain showed chronic microvascular ischemic changes with volume loss and an acute infarct in the left parietal-occipital region. She also developed fever with leukocytosis, and an abdominal CT scan revealed fluid in the gallbladder fossa and a possible fistulous tract in the RLQ; surgery thought she was not a surgical candidate. The patient now lacks decision-making capacity, but she has completed a living will and medical power of attorney. She is grimacing in pain. What should be done?

5. Objectives At the completion of this talk, participants should be able to: • Explain why end-of-life care is especially appropriate for dialysis patients; • Define palliative care and its role for dialysis patients; • Discuss the RPA/ASN Statement on Quality Care at the End of Life; and • Describe the recommendations of the RWJF ESRD Peer Workgroup on End-of-Life Care.

6. 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

7. 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.”

8. Expected Remaining Years of Life For 1996 Dialysis Populations

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

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

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

12. 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)

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

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

15. Aspects of Palliative Care • Pain and symptom management • Advance care planning • DNR • Advance Directives • Psychosocial and spiritual support

16. Definition Palliative care is comprehensive, interdisciplinary care of patients and families facing a chronic or terminal illness focusing primarily on comfort and support. Billings JA. Palliative Care. Recent Advances. BMJ 2000:321:555-558.

17. Curative / Remissive Therapy Start Dialysis Death Hospice Palliative Care

18. Would you be surprised if the patient died in the next year?

19. End-of-Life Choice If you had to choose between being kept alive as long as possible even if you were experiencing pain & suffering or living a shorter time to avoid pain… and being put on machines, which would you pick? * Follow-up Phase Only

20. Patient’s ConcernsRegarding End-of-Life Care • Receiving adequate pain and symptom control • Avoiding inappropriate prolongation of dying • Achieving a sense of control • Relieving burden on loved ones • Strengthening relationships with loved ones Singer PA, et al. Quality end-of-life care: patients’ perspectives. JAMA 1999; 281:163-168.

21. Top 5 Attributes of a Good Death • Freedom from pain • At peace with God • Presence of family • Mental awareness • Treatment choices followed Steinhauser, et al. Factors considered important at the end of life by patients, family, physicians, and other health care providers. JAMA 2000:284:2476-2482.

22. RPA/ASN Statementon Quality Care at the End of Life

23. RPA/ASN Statement on Quality Care at the End of LifeRecommendations 1. All members of the renal health care team including nephrologists, nephrology nurses, nephrology social workers, and renal dietitians should obtain education and skills in the principles of palliative care to ensure that ESRD patients and families receive multidimensional, compassionate, and competent care at the end of life.

24. RPA/ASN Statement on Quality Care at the End of Life 2. In responding to an ESRD patient/surrogate decision to forgo dialysis, the nephrologist is obligated to determine, if possible, why the patient/surrogate has decided to forgo dialysis … Once the nephrologist is satisfied that the patient’s decision to forgo dialysis is informed and uncoerced, the nephrologist should respect the wishes of the patient/surrogate.

25. RPA/ASN Statement on Quality Care at the End of Life 3. After a decision is made to forgo dialysis, the renal team should refer the patient to a hospice or adopt a palliative care approach to patient care. In either case, the nephrologist and other members of the renal team should remain active in the patient’s care to maintain continuity of relationships and treatment.

26. RPA/ASN Statement on Quality Care at the End of Life 4. Nephrologists and other members of the renal team should obtain education and skills in advance care planning so that they are comfortable addressing end-of-life issues with their patients.

27. RPA/ASN Statement on Quality Care at the End of Life 5. Dialysis facilities should develop protocols, policies, and/or programs to ensure that advance care planning is conducted with their patients.

28. 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.

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

30. 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

31. 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

32. Results-Demographics

33. Exposure to Palliative Care

35. Nephrology Core Curriculumin Palliative Care • Relevance in ESRD • Communication Issues • Advance Care Planning and CPR • Pain Management • Symptoms in Kidney Disease • Incorporation into Dialysis Units • Hospice, Grief, and Bereavement • Ethical and Legal Issues in Withholding/Withdrawing Dialysis Moss et al., AJKD 2004;43:172-185

36. 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

37. 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.

38. 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.

39. 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.

40. 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.

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

42. A Role for Palliative Care The patient is a 56 year old female with ESRD from Type I DM who was admitted from the NH with altered mental status occurring over the preceding 24 hours. The patient has been on dialysis for three years and is transported by ambulance for her treatments. Her other medical problems include retinopathy with limited vision, CVA with left hemiplegia, and peripheral vascular disease with bilateral LE amputations.

43. Conclusions • Because of shortened life expectancy, end-of-life care is particularly relevant for ESRD pts. • Palliative care offers the treatment most pts and families want but is a new way of thinking. • The knowledge and skills to provide palliative care for ESRD patients are available but not in widespread use.

44. 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.