Getting from Roulette to Reliable: High Value Care for the Last Part of Life Aging America: A Reform Agenda for Living Well and Dying Well The Hasting Center Symposium, Washington, DC May 20, 2008 Joanne Lynn, MD, MA, MS (Speaking on my own, not for US government policy)

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3 By permission of Johnny Hart and Creators Syndicate, Inc.

4 How Americans Die: A Century of Change Age at death 46 years78 years Top Causes InfectionCancer AccidentOrgan system failure ChildbirthStroke/Dementia Disability Not much 2-4 yrs ave. before death, <6% die without related bills Financing Private, Public, substantial- modest in US - 83% in Medicare ~½ of women die in Medicaid

5 Why target fatal chronic illness? bigIt’s big – >1/3 of lifetime expenses, most “being ill” badIt’s bad – unreliable, often harmful uglyIt’s ugly – little political will for reform –Unpleasant and complicated situations –Inadequate data and methods –Bad manners

6 But – Some Promising Innovations Hospice PACE (Program of All-Inclusive Care for the Elderly) SNP (Special Needs Plans – capitated high-risk) Palliative care – now in most hospitals Elderly and Disabled Waivers CARE and Care Transitions, upcoming from CMS

7 CARE: Continuity Assessment Record & Evaluation Beneficiary’s health situation At critical times, such as transfers On-line, real-time Information to “downstream” clinicians Quality and payment information to Medicare In demonstration now, in QIO agenda by fall.

8 Care Transitions in Communities Build on Dartmouth Data Target Seriously Ill Medicare Beneficiaries Assure Continuity and Reliability Support by Quality Improvement Organizations (QIOs) With ALL Clinical Service Providers And Community Leaders How can we learn to improve quality and also deliberately enhance efficiency?

9 Lewis and Clark – leaving St Louis, May 1804

10 Pushing for Reform THE BUSINESS CASE: THE AIM: –Social consensus on how to live and die with serious illness THE STRATEGIES: –Engender political demand –Engender the workforce –Tailor services, payment, quality measures to populations

11 The Business Case Pay well only for continuity care Make planning ahead standard Permit continuity over time and setting Change the information flow –Require feedback “upstream” –Give relevant information to patients/families

12 The AIM Public stories – TV, famous people, other media Honest accounting of costs and benefits Include patient and caregiver voices – in coverage, payment, and quality Demonstrations – in substantial regions Compare small areas

13 Caregivers – Politics and Needs Organize caregivers for political power Demand reasonable working conditions Demand a role in setting priorities

14 Employee Work Force Change the skill mix for physicians Leadership positions for nurses, social workers Fair labor practices for aides

15 Tailor Care to Populations…

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19 Tailor Care to Populations… First – short course to dying **Mesh hospice and conventional care Second – exacerbations **Move services to home, advance care planning Third – dwindling course **Family support, nursing homes, supportive care

20 We have much to learn and little time

21 Map of the US, 1802

22 Map of the United States, 1826

23 Maps of the US, 1802 and 1824 Maps from the Smithsonian Institution Collection

24 Some Resources for Reform Transitions Patients and families Web – Handbook for Mortals (Oxford U Press, 1999)Policy Sick to Death and Not Going to Take it Anymore! Reforming Health Care for the Last Years of Life (U California Press, 2004) Quality Improvement Common Sense Guide to Improving Palliative Care (Oxford U Press., 2006)