Conversations at the Crossroads

1. Conversations at the Crossroads • Judy Peres, LCSW-C • Supporting Successful Transitions “Societal Perspectives on Health Care Policies” Center for Practical Bioethics April 10, 2013 Kansas City, MO

2. Societal Perspectives Health Care Policies –Promote or Hinder Advance Care PlanningConversations at the Crossroads Center for Practical Bioethics April 10, 2013Judith Peres, LCSW-C

4. Realities Revealed Conflicting societal forces complicate planning & delivery of care near the end of life • Goals of Care • Competing streams of revenue • Statutory & Regulatory Scramble • Quality care should not be dependent on luck, institutional largesse or charismatic leadership.

5. Overview • Brief History on End-of-Life Care & Advance Care Planning • Perspectives on Challenges • Clinical • Organizational • Public Policy • Innovative Efforts

7. Dying in the United States • 1900 – life expectancy, 46 years • People died quickly • Medical therapies focused on caring & comfort • People cared for the dying @ home

8. Dying in the United States • Death is unavoidable 2.5 million people die each year 83% are Medicare Beneficiaries

9. Dying in the United States • Modern health care system fights aggressively against illness and death • People survive illness & accidents • Live longer w/ multiple chronic illnesses

10. Hospice & Palliative Care • Origins of Palliative Care Hospice Movement, Dame Cicely Saunders Elizabeth Kubler-Ross

11. RiRight to Die ght to Die • Karen Ann Quinlin - 1985 • Nancy Cruzan - 1990 • Terri Schiavo - 2005

12. Approaching Death in America: Improving Care at the End of Life IOM, 1997

13. Advance Directives • Since 1970s, primary legal tool to communicate formally wishes regarding end-of-life care & enhance likelihood that wishes are followed by health care professionals • Living will • Health care power of attorney/proxy/agent • POLST Paradigm (Physician Orders for Life Sustaining Treatment: www.ohsu.edu/polst • “Necessary but not sufficient?”

14. Advance Directives Patient Self-Determination Act (PSDA) 1990 • Requires all health care facilities receiving Medicare or Medicaid funding to inform patients of their right to refuse medical treatment and to sign advance directives

15. Advance Care Planning • Legal transactional approach vs. communications approach • IOM, 1997: “Advance care planning is a broader, less legally focused concept than that of advance directives. It encompasses not only preparation of legal documents but also discussions with family members and physicians about what the future may hold…, how patients and families want their beliefs and preferences to guide decisions…, and what steps could alleviate concerns…that trouble seriously ill or dying patients.”

16. People Should Expect & System Should deliver… • Competent comprehensive & compassionate care • Across time, place & provider • In accord with a persons values, preferences & goals

17. Palliative Care • Respecting patient goals, preferences and choices • Comprehensive caring • Utilizing the strengths of interdisciplinary resources • Acknowledging and addressing caregiver concerns • Building systems and mechanisms of support

18. Goals of Palliative Care • Integration of the experience of life’s end: • Attending to suffering in all domains: • Biological and Physical • Psychological and Emotional • Social and Interpersonal • Spiritual and Religious • Intellectual and Professional • Reviewing one’s life narrative • Focusing on meaning

19. Goals of Palliative Care • Maintaining hope: • A confident expectation that good will come to one in the future • Preserving dignity: • Value, esteem, lovability • Healing vs. cure: • It is possible to die healed • Wholeness vs. Eradication of disease

20. Trends & Challenges Palliative Care • Comprehensive management of physical, social, spiritual and existential needs of patients • Objectives: to relieve symptoms and to improve the quality of life for patients [with chronic?] as well as terminal illnesses • Interdisciplinary Team Care • “Overmedicalization”

21. Challenges Clinical Perspective • Conflicting goals of care • Communication • Clinical services/lack of continuity

22. Clinical Perspective • Palliative care poorly integrated • Majority of deaths in hospital • Curing vs. Caring • Poor timing of palliative care Goals of Care/goal Setting

23. Clinical Perspective • Advance care directives • Importance of ongoing dialogue • Impact on surrogates Continuity of Care/Portability • No coordination across venues  disruption of care Goals of Care/Care Planning/Advance Care Planning

24. Clinical Perspective • Doctor–patient relationship • Family Training for caregivers Technical & psychological support for caregivers • Interdisciplinary practice Communication

25. Clinical Perspective • Impact of regulation and fear of sanction • Ignorance regarding pain management • Pain control as standard of care • State laws on pain management Clinical Services Pain and Symptom Management

26. Challenges Organizational Perspective Staffing Philanthropy Leadership

27. Organizational Perspective • Interdisciplinary team • Workforce shortage • Lack of bilingual staff • Burnout Staffing Issues

28. Organizational Perspective • Competition for charitable dollars • Community support for hospice • Sustainability Philanthropy

29. Organizational Perspective • Aging population • Lack of leadership training • Overcoming institutional resistance Leadership

30. Public Policy Perspective • Medicare & Medicaid - Coverage and financing • Regulation & Oversight • Affordable Care Act

31. Public Policy Perspective Medicare & Medicaid From a public policy perspective, a tangle of coverage, financing and oversight rules govern how beneficiaries receive “palliative” care

32. Public Policy Perspective “Je weniger die Leute daruber wisser, wie wurste und gesetze gemacht warden, desto besser schlafen sie nachts.” “The less the people know about how sausage and laws are made, the better they sleep at night.” Otto Von Bismarck

33. Almost 80% of Medicare Spending Is for People With Five or More Chronic Conditions • Ninety-six percent of Medicare expenditures involve individuals with multiple chronic conditions. Source: Medicare Standard Analytic File, 2007

34. Public Policy Perspective • Medicare. • Coverage and payment for palliative care, complex and poorly understood. • Remains acute care focused. • Medical necessity criteria – recent change not understood • For palliative care -- goal is not improvement, but comfort or slowing of disease progression.

35. Public Policy Perspective Medicaid • Hidden source of funding for EOL care through LTC services • 10 Million “dual eligibles” • 66% of spending for dual eligibles for LTC services • Hospice • Optional Benefit • Based on Medicare requirements • States pay 95% of NFs “room & board” rate to the hospice for Medicaid residents

36. Public Policy Perspective Approximately 30% of Medicare spending is on the last six months of life Hospice and other reforms have done little to reduce spending in last six months of life

37. End-of-Life Care Medicare • Covers palliative care indirectly in most providers; explicitly through hospice: • Hospitals– Growth in palliative care programs… not fit Medicare coverage & payment policies • SNFs– coverage & payment not intended for chronic, LTC. SNF Part A, not available once beneficiary elects hospice • Hospice Benefit, TEFRA ‘82

38. End-of-Life Care • Medicare Spending on Hospice, 2010 was $13 billion • Spending for each beneficiary receiving hospice: $8,405 • Total number of Medicare hospice patients: 1.1 million • 44% of decedents in 2010

39. Regulation & Oversight Public Policy Perspective Regulation • Medicare conditions of participation • Under- and over-regulation • Impact of compliance on patient care Oversight • Office of inspector general – Certifications of terminal prognosis • Centers for Medicare and Medicaid services – Hospice/Nursing Facility survey oversight • General accounting office – Delays in using hospice benefit

40. Public Policy Perspective Includes numerous changes to Medicare: • Changes to Medicare plan and provider payments; benefit • Improvements; delivery system reforms; new revenues • Reduces net Medicare spending by $716 billion over 10 years • (2013‐2022) Affordable Care Act – March 2010

41. Public Policy Attempts to “have the conversation” • Welcome to Medicare – 2003 • Affordable Care Act - 2010 • Wellness Visit - 2011

43. A Third Say ACA Includes Death Panels, Another One In Five Unsure I’m going to read you a list of specific elements or parts of the law. For each, please tell me whether you think it is included in the health reform law, or not. Note: Items asked of separate half samples. Source: Kaiser Family Foundation Health Tracking PollOmnibus Supplement (conducted March 1-4, 2012)

44. What we know: • Population is aging & more diverse; • We are living longer with greater frailty; • Providers need to be skilled @ eliciting patient’s values & preferences; • Coordinated Care is key to Quality

46. Promoting Planning Advance Care Planning “a structured dialogue (communication and negotiation) with the goal of shaping clinical care by the patient’s preferences and goals in life over time” Targeted (by age, medical condition, prognosis) Tailored (to health status, circumstances, beliefs/values) Flexible and Continuous

47. Promoting Planning Advance Care Planning • Embedded in comprehensive care plan • Iterative Process • Allows people to define the type of EOL care they desire • Explains extent to which person wants: life-sustaining medical treatments; Preserves personal autonomy • Identifies Surrogate Decision Maker

48. Promoting Planning: Communication

49. Promoting Planning – continuing wave of innovations

50. Promoting Planning – continuing wave of innovations •  Bill Frist – calls for “a national, high-profile, civil dialogue, which should begin in the living rooms of patients and their families and extend to nurses’ and doctors’ offices, hospitals, religious institutions, and policy chambers” that asks the question: How do I want to die? • “How Doctors Die” It’s Not Like the Rest of Us, But It Should Be Ken Murray, MD