1. Preoccupation with DNRs: Expanding the limits of Advance Care Planning John G. Carney, Vice President Aging and End of Life National Kidney Foundation and Missouri Kidney Program Tuesday, May 19, 2009 Kauffman Center, Kansas City, MO

2. Objectives 1. Historical Review of ACP in U.S. and major shifts from legal to social models in last 30 years. 2. Integrating clinical decision making with patient goal setting – professional and ethical obligations

3. Objectives 3. Emerging research begins questioning benefits of aggressive care for those living with advanced disease. 4. Unique construction of ESRD benefit and its impact on advance care planning.

4. Objectives Moving away from legal transactional approach to communications approach Recognitions that this ACP is dynamic process not static Increase in age and progression of chronic disease affects decision making (burden)

5. Advance Directives A Case of Balkanization –Multiple AD statutes: 23 states –Multiple statutory forms Single form: 17 states No forms: 4 states (MA, MI, NJ, OH) –Mandatory AD forms (substantially in the following form): 13 states –Mandatory disclosures: 8 states –Mandatory phrases: 9 states –Witnessing + notarization: 3 states –Special Institutional witnessing: 7 states –Required triggers (terminal/PVS)

6. Present Trends & Challenges 1.Simplification/consolidation (de-legalizing) of advance directive law. –21 States -- AL*, AZ, CA, CT, DE*, FL, HI*, KY, ME*, MD, MN, MS*, NJ, NM*, OK, OR, TN, VA, VT WV, WY* * Modeled to some extent on UHCDA 2.Preference for & support of appointment of a proxy. –Proxy trumps LW and guardian –In drafting, address scope of proxy’s discretion 3.Changing advance planning from a form to process –Avoid mandatory forms or language 4.More social prompts & tools for advance planning –Driver’s license notice –Registries

7. Present Trends & Challenges 5.More non-judicial pathways for decision-making/dispute resolution. –e.g. ethics committees. –“Unbefriended” – research needed 6.Possible rethinking of substituted judgment. 7.Translating patient care goals/wishes into the language of the health care system. –POLST and out-of-hospital DNR protocols.

8. DNR Protocol limits Transition to DNR is understandable but insufficient DNR too often interpreted as Do Not Respond CPR is not the only life sustaining treatment Palliative care objectives not achieved when limited to discussions on acute intervention

9. 9 Aging Population Rising median age of dialysis population >50% over 65 yrs old > 79,000 dialysis patients die per year ~20% die after decision to withdraw High percentage with comorbidities High in-hospital death-63%* * United States Renal Data System 2001-2002 cohort

10. High Symptom Burden HD patients median # of symptoms=9 Pain in over 50% Associated with impaired HRQoL Associated with depression Weisbord, et al. JASN 2005:16:2487-2494

11. Patient’s Concerns Regarding End-of-Life Care 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. JAMA 1999; 281:163-168.

12. Relevance to ESRD Shortened life expectancy High symptom burden Aging population

13. ESRD Patient Probability of Survival Patient PopulationSurvival (%) 1-yr for all incident patients, unadjusted 79 1-yr for incident patients >65 yrs, unadjusted 65 2-yr for all incident patients, unadjusted 65 2-yr for all incident patients >65 yrs, unadj 48 5-yr for all incident patients, unadjusted 38 5-yr for incident patients >65 yrs, unadjusted 18 10-yr for all incident patients, unadjusted 20 10-yr for incident patients >65 yrs, unadjusted 3 USRDS, 2004 Annual Data Report

14. Dialysis Withdrawal and Hospice Status USRDS 2001-2002 Cohort Dialysis Withdrawal and Hospice Status Deceased Patients (N=115,239) PercentMean Age in Years Hospice Yes15,56513.573.4 ± 11.0 * Hospice No99,67486.568.6 ± 13.4 Withdrawal Yes25,07521.872.7 ± 11.8 ** Hospice Yes10,51841.973.9 ± 10.6 Hospice No14,55758.171.7 ± 12.3 Withdrawal No81,62470.868.0 ± 13.4 Hospice Yes2,7513.471.7 ± 11.7 Hospice No78,87396.667.9 ± 13.5 Withdrawal Status Unknown 8,5407.471.1 ± 13.2 Murray and Moss, ASN 2004

15. High Symptom Burden HD patients median # of symptoms=9 Pain in over 50% Associated with impaired HRQoL Associated with depression Weisbord, et al. JASN 2005:16:2487-2494

16. Profile of CKD patient Limited Life Expectancy –Most patients with chronic kidney disease (CKD), especially those non-candidates for transplantation, have significantly shortened life expectancy. –In comparison to population as a whole, dialysis patients live about 1/3 as long as those without ESRD of same age and sex. 45 % of new CKD patients have diabetes, Many other comorbid conditions including hypertension, congestive heart failure, ischemic heart disease, and peripheral vascular disease. Excellence in End of Life Care – ESRD Workgroup Report, 2002 Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF) http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689

17. Profile of CKD patient Lack of information and misconceptions regarding the process of dying represent obstacles to optimum end-of-life care and decision making for CKD patients and their families. Excellence in End of Life Care – ESRD Workgroup Report, 2002 Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF) http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689

18. ESRD/CKD Quality of Life Discordance between the life-sustaining technology of dialysis and the burdens of the symptoms of renal insufficiency and comorbidities common in ESRD. Comorbidities insufficiently appreciated at the outset by patients and families and incompletely described by clinicians. This subgroup examined ways to better identify factors that impact patients’ quality of life. Excellence in End of Life Care – ESRD Workgroup Report, 2002 Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF) http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689

19. Quality of Dying Subgroup Paucity of literature addressing the quality of the end-of-life experience and care for ESRD patients, particularly from the perspectives of patients and families. Anecdotal information and studies suggest that the “quality” of the dying experience among dialysis patients is less than optimal. Excellence in End of Life Care – ESRD Workgroup Report, 2002 Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF) http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689

20. Quality of Dying Subgroup Factors contributing to this poor experience include: –inadequate advance care planning; –inadequately treated pain and other symptoms; –insufficient attention to emotional stress of patients and families and family dynamics; –a general lack of patient/family/public education about end-of-life care; –and failure to address issues of religion, race and cultural diversity as they relate to life completion and closure. Excellence in End of Life Care – ESRD Workgroup Report, 2002 Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF) http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689

21. Quality of Dying continued No consistent policy to honor preferences of dialysis patients who do not want to undergo cardiopulmonary resuscitation, More worrisome, policies of many dialysis units either unclear on this point or prohibit honoring a legitimate Do Not Resuscitate (DNR)directive from an ESRD patient. Excellence in End of Life Care – ESRD Workgroup Report, 2002 Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF) http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689

22. Education Subgroup findings Key barrier to change – correct deficiency of knowledge about palliative care. –Lack of curriculum or educational materials hapters on palliative care for ESRD patients. –significant gaps in training programs and in nephrologists’ knowledge, attitudes, and practice skills in renal palliative/supportive care. At the root of these deficiencies in education and practice lies a culture of denial related to dying and death within dialysis units—one shared by nephrologists, staff, patients and families. Excellence in End of Life Care – ESRD Workgroup Report, 2002 Excellence in End of Life Care – ESRD Workgroup Report, 2002 (RWJF) http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3689

23. Additional Studies and Findings HD patients only get moderate symptom relief. Symptom relief often clustered (fatigue, disturbed sleep) Satisfaction associated with relief significantly impacts QOL

24. Additional Studies and Findings Recommendations for Addressing End-of- Life Care in ESRD Based on National Consensus Project for Quality Palliative Care Mid-Atlantic Renal Coalition 1527 Huguenot Road Midlothian, VA 23113 804-794-3757 marc@nw5.esrd.net

25. 2007 Study by RPA on advances in palliative care for ESRD pateints In the 1990s, reported practices of nephrologists' end-of-life decision-making showed much variability. Renal Physicians Association (RPA) and the American Society of Nephrology (ASN) developed a clinical practice guideline on end-of- life decision-making. 2005 research to determine whether nephrologists' attitudes and reported practices had changed over time –survey responses from 296 nephrologists completing an online survey in 2005 were compared with 318 nephrologists who completed a similar mailed survey in 1990. In 2005, less variability was noted in reported practices to withhold dialysis from a permanently unconscious patient (90% would withhold in 2005 versus 83% who would withhold in 1990, P < 0.001) and to stop dialysis in a severely demented patient (53% in 2005 would stop versus 39% in 1990, P < 0.00001).

26. 2007 Study by RPA on advances in palliative care for ESRD patients Significantly more dialysis units reported written policies on cardiopulmonary resuscitation (86% in 2005 versus 31% in 1990, P < 0.0001) Withdrawal of dialysis (30% in 2005 versus 15% in 1990, P < 0.0002); Nephrologists were also more likely to honor a dialysis patient's do-not-resuscitate order (83% in 2005 versus 66%, P < 0.0002) Consider consulting a Network ethics committee (52% in 2005 versus 39%, P < 0.001). Nephrologists' reported practices in end-of-life care have changed significantly over 15 years separating the two surveys, suggesting benefit in development of clinical practice guideline.

27. 2007 Study by RPA on advances in palliative care for ESRD patients Clinical Journal of the American Society of Nephrology

28. New Data show Recent research enables us to predict more accurately the patients for whom the burdens of dialysis will likely outweigh the benefits. Dialysis decision-making should remain case- by-case. New nephrology guidelines helpful in decision- making. Professional integrity requires us to respect patients’ wishes even when families want to override them and to do no harm.

29. Patients who Should Not Be Dialyzed Those who (or by legal agent) refuse Those with profound neurological impairment Terminally ill from a non-renal cause Those whose condition precludes the technical process of dialysis advanced dementia and severe mental disability RPA/ASN. Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis. 2000.

30. Clinical Practice Guideline on Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis Renal Physicians Association and American Society of Nephrology CLINICAL PRACTICE GUIDELINE Number 2 Washington, DC February 2000

31. RPA/ASN Guideline Nine recommendations Rationale for each recommendation 25 prognostic tables 302 references Consensus of AAKP, RPA, ASN, ANNA, ASPN, NKF, NRAA, ESRD Forum

32. Recommendation No. 1: Shared Decision-Making A patient-physician relationship that promotes shared decision-making is recommended for all patients with either ARF or ESRD. Shared decision-making participants should involve at a minimum the patient and the physician. If a patient lacks decision-making capacity, decisions should involve the legal agent. With the patient’s consent, shared decision- making may include family members or friends and other members of the renal care team.

33. Recommendation No. 2: Informed Consent or Refusal Physicians should fully inform patients about their diagnosis, prognosis, and all treatment options, including: –1) available dialysis modalities, –2) not starting dialysis and continuing conservative management which should include end-of-life care, –3) a time-limited trial of dialysis, and –4) stopping dialysis and receiving end-of-life care. Choices among options should be made by patients or, if patients lack decision-making capacity, their designated legal agents. Their decisions should be informed and voluntary. The renal care team, in conjunction with the primary care physician, should insure that the patient or legal agent understands the consequences of the decision.

34. Recommendation No. 3: Estimating Prognosis To facilitate informed decisions about starting dialysis discussions should occur with the patient or legal agent about life expectancy and quality of life. Primary care physician or nephrologist familiar with prognostic data should lead discussion. Discussions should be documented and dated. All patients requiring dialysis should have chances for survival estimated, realizing imprecision of predicting patient survival. Estimates should be discussed with patient or legal agent, patient’s family, and among the medical team. For patients with ESRD, these discussions should occur early in course of the patient’s renal disease and continue as disease progresses. For patients who experience major complications substantially reducing survival or quality of life, discussion and/or reassessment of treatment goals, including consideration of withdrawing dialysis should occur.

35. Recommendation No. 4: Conflict Resolution Initiate systematic approach for conflict resolution if disagreement regarding benefits of dialysis between the patient or legal agent (and those supporting the patient’s position) and a member(s) of the renal care team occur. Conflicts within the renal care team or between the renal care team and other health care providers that occur should prompt review the shared decision-making process for potential sources of conflict: 1) miscommunication or misunderstanding about prognosis, 2) intrapersonal or interpersonal issues, or 3) values. If dialysis is indicated emergently, provide while pursuing conflict resolution, if patient or legal agent requests it.

36. Recommendation No. 5: Advance Directives The renal care team should attempt to obtain written advance directives from all dialysis patients. These advance directives should be honored.

37. Recommendation No. 6: Withholding or Withdrawing Dialysis Withhold or withdraw dialysis for patients with either ARF or ESRD when patients: –with decision-making capacity, who being fully informed and making voluntary choices, refuse dialysis or request dialysis be discontinued –who no longer possess decision-making capacity and have previously indicated refusal in an oral/written advance directive –who no longer possess decision-making capacity and whose properly appointed legal agents refuse dialysis or request that it be discontinued –with irreversible, profound neurological impairment such that they lack signs of thought, sensation, purposeful behavior, and awareness of self and environment.

38. Recommendation No. 7: Special Patient Groups Reasonable to consider not initiating or withdrawing dialysis for patients with ARF or ESRD who have terminal illness from a non- renal cause or whose medical condition precludes the technical process of dialysis. Recommendation No. 8: Time- Limited Trials For patients requiring dialysis, but who have uncertain prognosis, or for whom consensus cannot be reached about, consider offering a time-limited trial of dialysis.

39. Recommendation No. 9: Palliative Care All patients who decide to forgo dialysis or for whom such a decision is made should be treated with continued palliative care. With the patient’s consent, persons with expertise in such care, such as hospice health care professionals, should be involved in managing the medical, psychosocial, and spiritual aspects of end-of-life care for these patients. Patients should be offered the option of dying where they prefer including at home with hospice care. Bereavement support should be offered to patients’ families.