Palliative Care and Hospice: A Public Health Issue

1. Palliative Care and Hospice: A Public Health Issue Julia Kasl-Godley, Ph.D. VA Hospice and Palliative Care Center VA Palo Alto Health Care System Stanislav V. Kasl Award and Lecture October 16, 2014

2. Stanislav Kasl, Ph.D. Professor Mentor Colleague Epidemiologist, Social Psychologist Father/Father-in-law Grandfather Friend Person who lived with and died from cancer

3. Objectives • Define palliative care and hospice • Review findings re palliative and EOL care in the US* • Identify public health response • Highlight initiatives within VA • Encourage consideration of palliative care in professional activities *Palliative Care is a critical global health issue but beyond scope of this talk

4. Definition Palliative Care Hospice • Provided at any point in disease trajectory of advanced illness • Manages symptoms, enhances QOL, provides interdisciplinary support to family system • Assists with medical decisions aligned with goals of care • Delivered concurrently with cure-oriented, life-prolonging therapies • Occurs across continuum of care venues, seeks to manage care transitions through care coordination • Type of palliative care that includes end-of-life care, life-closure tasks, bereavement support • Often linked to Medicare Hospice Benefit • Typically forgo disease-directed therapy, unless for problems other than terminal illness • Can disenroll if stabilize or improve

5. Context • 6 of 10 leading causes of death are chronic diseases • EOL=extended process for which people have time to prepare • Yet, individuals often feel unprepared, leaving disconnect between preferences & actual care and, a multitude of problems (Anderson & Horvath, 2004; Anderson 2010; National Center for Health Statistics, 2011)

6. Common Problems at EOL • Physical sx: pain, fatigue, appetite, sleep problems; dyspnea, nausea/vomiting, constipation; delirium; declining functional status • Psycho-social-spiritual sx: changes roles, status, abilities, lifestyle; interpersonal strain; existential distress; diminished control; diminished sense of meaning/purpose/dignity; adjustment, grief reactions; poor communication; unfinished business; • Fragmented, high cost care with limited access to H&PC • End-of-life preferences not honored • Economic and caregiving burden • Physical, psychological morbidity; mortality in caregivers • Pre-existing, chronic, recurrent or recent onset mental illness • 15-50% hospital • 18% nursing home • 40% in-home care Emanuel & Emanuel, 1998; Nelson et al, 2001 ; Feldman et al., 1987; Van Hemet et al., 1992; Bressi et al., 2003; McCarthy et al., 2004; Miller et al., 2007

7. Evidence Base Well Established • Palliative care assoc. with increased pt &family satisfaction with care; reduced symptom burden, improved bereavement adjustment; sometimes longer lives than similarly ill patients who do not receive PC • PC also associated with cost savings --achieved through earlier intervention, reductions in ED visits, ICU stays, hospital readmissions • significant given that 2/3 of Medicare spending covers the 20% or beneficiaries that have 5+ chronic conditions (Gade et al., 2008; Mottison et al., 2011; Higginson & Evans, 2010; Higginson et al., 2003; Casarett et al., 2008; Bell, Somogy-Zalud, & Masaki, 2010; Temel et al., 2010 )

8. SO…why don’t people have better EOL experiences given that Palliative care is effective? • It’s complicated…

9. IOM report (2014) • perverse financial incentives • fragmented care delivery system • time pressures that limit communication • lack of service coordination across programs • …several collateral effects: • frustration among professionals at mismatch between training & complex needs of pts • a high, escalating financial price, which includes costs for interventions that many people near end of life do not want • perception that the health care system is not designed to meet individuals most pressing needs and priorities, many of which involve not medical care but social services(pg. 1-1)

10. “in the face of an ever-increasing population with chronic conditions, the current system, with its emphasis on acute curative care, will fail to provide needed long-term chronic care and palliative and support services” (pg. 261) Woops. Wrong report

11. IOM report (1997) • People suffer at EOL from errors of omission, commission. “These problems are reinforced by care systems that are not structured to provide the clinical expertise, reliability, continuity and emotional support needed by people approaching death” (pg. 264) • Legal, organizational, economic obstacles • Inadequate education, training of health care professionals to care well for people at EOL • Too limited evidence-base • Biomedical, clinical research emphasizes prevention, detection, cure of disease, prolongation of life. Limited support for end stages of diseases, physiological bases of sxs, sx relief • Epidemiological, health services research not contributed a strong base for understanding degree to which people suffer sxs, experience death alone/others, comprehend diagnostic, prognostic information; achieve a dying that is consistent with preferences, community norms, & PC principles • Metrics, outcomes needed other than death; focus on monitoring, improving quality of care for those approaching death

12. Are we really in the same place that we were 17 years ago? • No, some things have changed….

13. The Intervening Years • Project on Death in America (Open Society Institute) (1994-2003) • Dartmouth Atlas of Health Care Project (1996-present) • VA End of Life Summit (1997), VA Interprofessional Fellowship program in Palliative Care (2001), VA Hospice and Palliative Care Program Office (2004) • Oregon passes Death with Dignity act (1997), Washington (2008), Vermont (2013) follow • Curriculum development, train-the-trainer models (e.g. EPEC--1997, ELNEC--2000, APA EOL modules--2008) • PBS series On Our Own Terms: Moyers on Dying in America (2000) • Last Acts Report. Means to a Better Life: A Report on Dying in America (2002) • Palliative Care Leadership Centers (2004) established by RWJ and CAPC • IOM reports Cancer Care for the Whole Patient (2008), Relieving Pain in America (2011) • VA Comprehensive End of Life Care Initiative (2009-2012) • Clinical Practice Guidelines for Quality Palliative Care by the National Consensus Project (2004); 2nd edition (2009); 3rd edition (2013); National Quality Forum endorses A National Framework and Preferred Practices for Palliative and Hospice Care Quality (2006) • Hospice and Palliative medicine recognized as a medical specialty (2006); ACGME adds hospice and palliative medicine to its list of accredited programs (2009) • Credentialing programs in hospice and palliative care for (SW--2009, Chaplaincy, Nursing), advanced practice palliative care fellowships • “Death Panels” (2009) • Adoption of Physicians Orders for Life Sustaining Treatment (POLST); form first used in Oregon (1995); becomes law in CA, NY (2009) • Joint Commission launches Advanced Certification Program For Palliative Care (2011) • Improving Medicare Post-Acute Care Transformation Act (IMPACT)passed (2014)

14. Palliative Care and Hospice Today • Significant increase in number & capacity of palliative care, hospice programs

15. PALLIATIVE CARE GROWTH IN THE U.S. The prevalence of palliative care in U.S. hospitals with 50 beds or more has nearly tripled since 2000, reaching 61 percent of all hospitals of this size.

17. Palliative Care and Hospice Today • Palliative care expertise is growing across multiple venues and establishment of primary and specialty palliative care services • Outpatient ambulatory care clinics • few hospitals offer specialized outpatient PC & when exists, typically part-time, focused primarily on cancer care (e.g. Rabow, O’Riordan, & Pantilat, 2014), growing evidence that outpatient PC can improve satisfaction with care, improve symptom control/QOL, reduce care utilization, lengthen survival (Rabow, Kvale, Barbour, Cassel, Cohen, Jackson et al., 2013) • VA Palliative Care-Primary Care collaborative pilots • Home care programs • Home care often better at addressing physical symptoms than psycho-social-spiritual needs (Ventura, Burney, Brooker, Fletcher & Ricciardelli, 2013) • New models (Labson, Sacco, Weissman, Gornet, & Stuart, 2013) • Kaiser Permanente In-Home Palliative Care program • Sutter Health’s Advanced Illness Management program • VA Home Based Primary Care-Palliative Care pilot(Wharton, Manu, & Vitale, 2013) • Long term care: nearly 1/3 of adults 65+ die in nursing homes; ¾ of those persons with advanced dementia (Ersek & Carpenter, 2013) • Limited use of hospice/palliative care (e.g. contract with community hospice agencies; internal PC teams); • “home grown” palliative care (Gonzalo & Miller, 2007)

18. One man’s story…2005-2010 • http://ecampus.stanford.edu/cooper_legacy/index.html • http://www.youtube.com/watch?v=aSgRggu5kH8

19. But… as we have learned, Mr. Cooper’s experience is not everyone’s story. Why not? • Remaining challenges…

20. IOM Report (2014): “Key Findings” • Delivery of Person-Centered, Family-Oriented Care • Multiple transitions between health care settings—including high rates of preventable hospitalizations--creating fragmented, burdensome care • Increasing demands on family caregivers; broader range of tasks (personal care, household management, medical, nursing) • Limited timely referral to palliative care despite guidelines encouraging disease-oriented specialists to counsel about palliative care • Clinician–Patient Communication and Advance Care Planning • Most people, particularly younger, poorer, minority, & less-educated individuals, do not have advance care conversations. Need conversations about care choices & work to ensure that patient, family decision making based on adequate information, understanding. Acute care is default • Incentives, quality standards, &system support needed to promote improved clinician communication skills and more frequent, productive clinician–patient conversations

21. IOM Report (2014): “Key Findings” • Public Education and Engagement • Most Americans lack knowledge about EOL care choices; health community, other leaders have not fully utilized strategies to make knowledge available, meaningful, &relevant across diverse groups; at societal, community/family, & individual levels • Efforts needed to normalize conversations about death and dying • Professional Education and Development • 3 problems: (1) insufficient attention to palliative care in medical and nursing school curricula; (2) educational silos that impede development of interprofessional teams; (3) deficits in equipping physicians with sufficient communication skills • Health professionals are not always adequately prepared to deliver “basic” or “primary” palliative care to patients who are not currently hospitalized or do not require specialty palliative care

22. Examples • Insufficient staffing on PC teams remains—affects access, LOS (PC registry) • August 2014 Dept. Of Veterans Affairs, Office of Inspector General report • where are the psychologists???? Integrated care models not made it to PC outside of VA • Increasing demand for PC will soon outstrip the supply of providers • in 2013, there were approx. 5,000 board certified HPM physicians, more than half of whom work less than full time (Maddock, 2013) • estimated need of 6,000 to 18,000+ additional physicians to meet current demands

23. IOM Report (2014): “Key Findings” • Policies and Payment Systems • Incentives under fee-for-service Medicare result in more use of services (hospital days, intensive care, emergency care), more transitions among care settings, &late enrollment in hospice, all of which jeopardize quality of EOL care & add to its costs • Payment silos contribute to fragmentation of care, hinder coordination across providers, and encourage inappropriate utilization.Changes are needed throughout the health care system to incentivize provision of comprehensive palliative care • Programs that integrate health care & social services may reduce hospitalizations &health care costs while improving QOL. Successful models of these programs, including ways to ensure financial sustainability, need to be implemented broadly • Quality standards and measures are needed to ensure that changes in payment systems, particularly those occurring under the Patient Protection and Affordable Care Act, do not adversely affect quality of care for patients at EOL

24. IOM Report (2014): bottom line • Success and sustainability of palliative care depends on ability to integrate social and medical needs • Without fundamental changes in health professional training, no matter how payment and system designs change, clinicians will be unable to meet the needs of patients facing serious illness Meyer 2014

25. Is Palliative Care a Public Health Issue?

26. Issues to Consider Ideally, people would live long, healthy lives until an advanced age. Dying &morbidity would be “compressed” Increasing gap between actual life expectancy &“healthy life” expectancy such that increasing likelihood of longer period of poor health/disability, despite significantly greater health care expenditures • Yet, in today’s world, what types of care is valued &rewarded? • What can we do when we can not cure or prevent illness, frailty, disability? • If we provided both high quality, effective and efficient cure-oriented and palliative care, might we free up more resources for more traditional public health domains that also affect morbidity and mortality? Modified from Hallenbeck Squaring the Curve, 2013

27. Public Health Response • Assessment: collect, assemble, analyze, make available info on health • Identify etiologic/risk/protective factors; increase understanding of problems; inform interventions; prospective cohort studies • Conduct research on evidence-based practices • Design metrics that capture benefits of H&PC; evaluate effectiveness of care, monitor progress towards achieving better dying/death; meeting needs • Policy Development: use of science in decision making re public health • Am. Public Health Assoc. Policy 20134 (2013) calls for a rebalance of medical & social services/supports through public health policy that fosters intersectoral collaboration, innovation and models of patient-centered palliative care • Develop health policy that recognizes and plans for the inevitability of dying, optimizes cost effective care; supports sustainable payment models • Assurance: assure services provided through regulation, direct delivery, community action • Disseminate information on palliative care: community; patient/family, professionals • Support development of trained palliative care workforce ; accreditation standards • Engage community; social marketing of palliative care • Improve access to high quality services through comprehensive systems of care; reduce barriers and utilization disparities; new delivery and payment models

28. One System’s Response: VA “Of all Americans who pass away this year, more than one-quarter will be veterans of our Nation’s armed services. Nearly 1,600 veterans die every day, and in this year alone, more of them will die than did during all four years of the Second World War” “Because VA is the largest integrated health care system in the country, we are well positioned to be a National leader in this highly specialized area of care. We have called attention to the need for a coordinated, collaborative approach that not only addresses, but publicizes the many emerging developments in end-of-life care among our employees, our customers and their families, and our many partners in the health care community”– former Secretary Anthony J. Principi, 2005 Comprehensive End of Life Care (CELC) Initiative (2009-2012): provided targeted funding to promote development and expansion of quality hospice and palliative care programs across VA

29. Comprehensive End of Life Care (CELC) Initiative VA Field Staff and Leadership VISN Palliative Care Program Managers and Clinical Champions VACO Hospice & Palliative Care Program Office Implementation Center PROMISE Center Resource Center Luhrs & Talamanco, “VA Comprehensive End of Life Care Implementation Center Update” 9-14-09

30. VA: Some Illustrative Examples Delivery of Person-Centered, Family-Oriented Care • Hospice & PC is a covered benefit for all enrolled veterans. EOL care is free • inpt settings (acute, ICU, dedicated H&PC units, CLC), outpt clinics, in collaboration with community partners (given less than 4% of all deaths occur in VA inpt settings) • Hospice & PC consult teams and/or inpatient units at every VA health care facility • 2001, only 41% of facilities had PC team • 2012, 68% of all inpt deaths received PC consult (47% in 2008) Clinician-Pt Communication & Advance Care Planning • Goals of Care template • On line tools, e.g. UCSF-SFVA PREPARE • Written material, e.g. shared decision making guide to LTC

31. VA: Some Illustrative Examples • Public education and Engagement • Partnering with Non-VA agencies serving veterans and their families • Hospice-Veteran Partnerships • NHPCO We Honor Veterans campaign • 1,800+ community hospices made commitment to improve quality, access and expertise in delivering care to veterans (2009-2012) • Professional education & development • Interdisciplinary Palliative Care Fellowship Program • EPEC-VA, ELNEC-VA, HPNA training • 4000+ nursing assistants received PC training; 772 VA staff trained to teach, thousands of staff trained; 151 PC teams and VISN leaders receiving training and mentoring to build PC programs (2009-2012) • National education, administrative calls, listserves

32. VA: Some Illustrative Examples • Policies and payment systems • Quality improvement interventions identified & disseminated through evidence-based practices; implementing, monitoring key metrics • Palliative Care Consult template • Care Assessment Need (CAN) Score in primary care • estimated probability of admission or death within a specified time • Pts in highest percentile of risk have 62% probability of admission, 30% probability of death, &72% probability of either event • I CARE and Serious Illness Initiative • Bereaved Family Survey: 59% of families rated EOL care as excellent; 24% as very good (2012); 63% in 2013 • Expansion of access in high priority areas: rural health, homelessness, Indian Health Service

33. Few Patients with CAN Scores ≥ 95 Referred to Home based or H&PC programs 1,353/241,917 pts (0.6%) referred to PC 569/241,917 pts (0.2%) referred to Hospice Fihn, Care Assessment Need (CAN) Score and the Patient Care, June 27, 2013

34. Adding Care to Add Value Putting this into action Step #2 National Roll out of PACT Goals of Care Discussions Training Step #1 Clinician Judgment plus CAN >95 (or >99) Step #3Identify and Align Supportive Services to Veteran’s Needs Luhrs & Magner-Perlin, Sept 2014, Integrating Palliative Care and Other Supportive Services into PACT

35. Mr. P 61, married, Protestant, Caucasian, combat Vietnam Vet, former mortgage broker, realtor Renal cell ca initially dx five years prior to hospice admission, now with mets to brain, lung Married 40 years; wife breast cancer survivor; 2 adult children, one with Bipolar Sexually molested by family member as child, in turn molested sister; remote history of substance abuse; recurrent nightmares, flashbacks, anger; recent depression diagnosis and suicidal ideation Recently told that he is no longer eligible for additional treatment; Palliative Care Consult team got involved at this point….

36. “We are a perk”--Not: My Hopes for Mental health Care and Palliative care • Attain increased visibility and integration (integrated care) within and outside of VA • Achieve consensus on competencies developed for psychologists, develop resultant self-assessment tool similar to Pike’s Peak tool for Geropsychology • Develop widely available curriculum, training opportunities across all levels of graduate education and post-liscensure • Encourage increased involvement and presence in national organizations, conferences • Incorporate knowledge of evidence based psychological treatment into PC practice guidelines • Oversight and coordination at VA Central office level

38. A Privilege… • Palliative care and hospice offers unique opportunities to change lives for the better, including our own • By helping seriously ill patients and their families find connection and healing in the midst of medical suffering, we ourselves are privileged to find deeper meaning in our own lives, personally & professionally • In the words of a recent psychology intern engaged in palliative care "It reinforces my identity as a clinical psychologist and reminds me of the privileges of this career" (Lee, personal communication)

39. …and Responsibility • We need to recognize the importance of establishing our core competences in basic palliative care with the understanding that… knowledge and skills are not enough • We must ask ourselves, in what ways can we be part of the change that we want to see happen? “The great aim of education is not knowledge, but action” —Herbert Spencer

40. A Privileged Responsibility • We need: • To be a powerful voice for individuals living with advanced, terminal illness • To hold ourselves accountable in creating a transformation in the delivery of care such that all individuals can reliably access quality palliative care by competent & compassionate professionals capable of addressing complex bio-psycho-social-spiritual needs • To recognize our hesitancies and struggles as well as our passion and potential. “If not you, who? If not now, when?” • To increase our credibility, cultivate competence as clinicians, researchers, educators, policy advocates • Adapted from “The ACE Project”

41. What Will our EOL Story be? What can we do, in our respective disciplines, as researchers, educators, clinicians and policy advocates to shape this nation’s stories? Our EOL story? • new research questions • additional course materials • partnerships with stakeholders, community organizations • interdisciplinary collaboration

42. VA Palo Alto Health Care System: At a Crossroads Our future: H&PC program cut by 2/3rds; move to another campus away from acute care hospital; Effectively no PC consult service and building not designed to accommodate high acuity, complexity. Replaced by podiatry, research on patients receiving transcatheter aortic value replacement

43. “The Best Possible Day” “Medicine has forgotten how vital such matters are to people as they approach life’s end. People want to share memories, pass on wisdoms and keepsakes, connect with loved ones, and to make some last contributions to the world. These moments are among life’s most important, for both the dying and those left behind. And the way we in medicine deny people these moments, out of obtuseness and neglect, should be cause for our unending shame. • --AtulGawande, NY Times, Oct 5 2014