Objectives. Renal Disease: A Palliative Approach. Palliative Care for CKD/ESRD Patients. Definition of Palliative Care

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1 Objectives Renal Disease: A Palliative Approach Alvin H. Moss, MD, FACP, FAAHPM Sections of Nephrology and Supportive Care Unpack what palliative care is and why relevant Report trends in ESRD care for older patients and opportunities to improve quality of interventions Discuss high symptom burden and opportunities to collaborate with dialysis centers and CKD clinics Describe unmet palliative care needs in dialysis centers Introduce role of ESCOs and opportunity they offer Identify role to improve process and outcome measures as palliative care is implemented in dialysis centers Follow us on Tweet with our conference hashtag: #CMSQualCon16 2 Definition of Palliative Care Palliative Care for CKD/ESRD Patients Palliative care refers to patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and facilitating patient autonomy, access to information, and choice. CMS definition adopted by National Quality Forum Meticulous Pain and Symptom Management Shared decision-making for informed consent Patient-specific estimates of prognosis (SQ) Timely discussions prompted by prognosis Inclusion of family/legal agent in discussions Completion of advance directives Completion of POLST form Immediately actionable Transferrable throughout health care setting Referral to hospice when indicated 3 The Surprise Question: A Trigger for Palliative Care Evaluation and Advance Care Planning Patient-Specific Estimate of Prognosis Using Surprise Question Would I be surprised if this patient died in the next year? Moss A, et. al. Utility of the Surprise Question to Identify Dialysis Patients with High Mortality. Clin J Am Soc Nephrol 2008;3:

2 Palliative Care: Relevance to ESRD Aging Population Shortened life expectancy Multiple comorbidities High symptom burden Nephrologists not prepared to treat Aging Population 8 Figure 1.4 Trends in adjusted* ESRD incidence rate (per million/year), by age group, in the U.S. population, Figure 1.13 Trends in the adjusted* prevalence (per million) of ESRD, by age group, in the U.S. population, Data Source: Reference Table A.2(2) and special analyses, USRDS ESRD Database. *Adjusted for sex and race. The standard population was the U.S. population in Abbreviation: ESRD, end stage renal disease. Data Source: Reference Table B.2(2) and special analyses, USRDS ESRD Database. *Point prevalence on December 31 of each year. Adjusted for sex and race. The standard population was the U.S. population in Abbreviations: ESRD, end stage renal disease International differences in use of RRT among patients with advanced CKD Biomedicalization of Aging US Wong SP, et al. Decisions about RRT in Advanced CKD Patients. CJASN 2016 Sep 22. [Epub ahead of print] Biomedicalization of aging has led to the routinization of clinical interventions for older patients. Standard practice is replacing choice. Societal expectations about standard medical care have resulted in dialysis for older patients. Nephrologists feel obligated to dialyze all elderly patients. Kaufman SR, et al. Revisiting the biomedicalization of aging. Gerontologist

3 2016 Annual Data Report Shortened Life Expectancy Survival Rates for Cancer and ESRD Patients 100.0% Survival Rate (%) 90.0% 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% Cancer ESRD Multiple Comorbidities 10.0% 0.0% 2 Year 5 Year 10 Year Data from USRDS and NCI ESRD patients have the greatest comorbid disease burden 17 There were 2,266 ESRD patients of the 57,753 veteran decedents in a study from Of the patients with cancer, dementia, HF, frailty, COPD and ESRD, the patients with ESRD had the greatest comorbid disease burden. Wachterman MW, et al. JAMA Intern Med 2016 Hypertension 95.4% Diabetes 53.3% Heart failure 44.1% CAD 41.6% PVD 25.6% MI 18.1% COPD 17.1% Study of 1,005 ESRD patients from 2728 form Longenecker JC, et al. JASN 2000 High Symptom Burden 18 3

4 High Symptom Burden Association Between Symptoms and Quality of Life Measures Median # =9 Pain in over 50% Impaired HRQoL Assoc ed with depression 19 Most prevalent Fatigue Pain Itching Trouble sleeping Weisbord SD, et al. JASN 2005:16: MQOL Total Score MQOL Physical Subscale QOL Single Item Index SWLS no symptoms 1 symptom 2+ symptoms Kimmel PL, et al. ESRD patient QOL. AJKD 2003 Note: All results statistically significant, p <.01 Unmet Supportive Care Needs in US Dialysis Centers N=487 Only 4.5% reported providing high-quality supportive care Top 5 least well met needs Bereavement support Spiritual support End-of-life care discussions provider, patient, and family Pain control Caregiver support to family Culp S, Lupu D, Arenella C, Armistead N, Moss AH. Unmet Supportive Care Needs in U.S. Dialysis Centers. J Pain Symptom Manage. 2016;;51(4): Evidence-based Clinical practice guideline 10 recommendations Practical strategies Available at RPA online store 22 Comparative survival of CKD patients over 75 years with and without dialysis April 4, 2012 Kaplan-Meier survival curves for those with high comorbidity (score=2), comparing 5 dialysis and conservative groups (log rank statistics <0.001, df 1, P=0.98). Murtagh F et al. NDT,

5 High Comorbidity Impacts Survival in the Elderly Age differences in treatment decisions and practices for advanced CKD stratified by comorbidity score Chandna et al. Survival of elderly patients with stage 5 CKD: Comparison of conservative management and RRT. Nephrol Dial Transplant. 2010; 26(5): Wong SP, et al. Decisions about RRT in Advanced CKD Patients. CJASN 2016 Sep 22. [Epub ahead of print] Survival by Age and Quintile of Intensity Older Patients More Likely to Receive Higher Intensity Treatment and Have Worse Survival Wong SPY, et al. JASN, 2014 AKI should not be viewed as a self-limited disease in older patients but as a significant risk factor for long-term morbidity, prolonged hospitalization, and mortality. Patients who received a higher level of intensity of care (of 5 levels) were more likely to be older and have non-resolving ATN as the cause of their ESRD. The patients who received higher level of intensity of care had an average survival of only 0.7 years. Patients > 85 years who received the highest intensity of care had a median survival of only 5 months with approximately 2 of those spent in the hospital. Wong SPY. JASN, 2014 ESRD Seamless Care Organizations=ESCOs Quill TE, et al. N Engl J Med 2013; 368:

6 The Comprehensive ESRD Care Model (CEC) Figure 14.8 Hospice utilization at the time of death among Medicare beneficiaries with ESRD overall, and by age, race, ethnicity, sex, modality, and whether dialysis was discontinued, (a) Hospice utilization by year, overall The CEC Model seeks to create incentives to enhance care coordination and to create a person-centered, coordinated, care experience, and to ultimately improve health outcomes for this [ESRD] population It encourages dialysis providers to think beyond their traditional roles in care delivery and supports them as they provide patientcentered care that will address beneficiaries health needs, both in and outside of the dialysis clinic. Data Source: Special analyses, USRDS ESRD Database. Denominator population is all decedents with Medicare Parts A and B throughout the last 90 days of life. Receipt of hospice care at the time of death was defined as having a claim in the Hospice SAF on or after the date of death or Discharge Status from hospice=40, 41, or 42. Abbreviation: ESRD, end stage renal disease Figure 14.9 Costs in the (a) last 30 days of life, and (b) last 7 days of life in relation to timing of hospice care, 2013 (b) Last 7 days of life End-of-life utilization and spending by length of time in hospice Data Source: Special analyses, USRDS ESRD Database. Denominator population is all decedents with Medicare Parts A and B throughout the last 90 days of life exclusive of those patients without any costs during the last 30 days of life and those with negative costs. Date of the first claim in the Hospice SAF (HCFASAF=H) within the last 90 days of life is taken as the date of first receipt of hospice services. Timing of hospice referral in relation to death was categorized as 0 2 days, 3 5 days 6 14 days, and days). Explanation of box plot: the lower border of the box is the first quartile and the upper border is the third quartile of the distribution, the length of the box is the interquartile range, and the line in the middle of the box is the median value. The whiskers extend from the lowest value of the distribution that is the first quartile minus 1.5 times the interquartile range at the bottom to the highest value of the distribution that is the third quartile plus 1.5 times the interquartile range at the top. Values outside this range (outliers) are not plotted Preliminary data from M. Wachterman, MD End-of-life utilization and spending by length of time in hospice Research Funding from the Gordon and Betty Moore Foundation to the Coalition a 15 month grant to support the development of the Pathways Project evidence based best practices for delivering person centered palliative care to patients with CKD The project will develop tools to establish pathways to conservative non dialytic management, palliative care throughout the continuum of kidney disease, and dialysis withdrawal for those patients who choose to stop dialysis. Preliminary data from M. Wachterman, MD 36 6

7 Conclusions Relevant to NHPCO Contact Information Palliative care is particularly relevant to ESRD patients, but... Palliative care has been poorly integrated into ESRD patient care. Those caring for CKD and ESRD patients need help in providing quality palliative care, but palliative care is not their focus. Reach out to primary care physicians, geriatricians, APRNs, and nursing homes in addition to nephrologists and dialysis centers. Educate dialysis social workers about hospice access with a nonkidney terminal diagnosis so they will know to refer. Approach ESCOs. Shared-risk may spur interest. Implementation of palliative care in dialysis centers affords opportunities to improve process and outcome measures. Presenter name: Alvin H. Moss, MD Nephrologist and Palliative Care physician amoss@hsc.wvu.edu Phone: