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 Jlynn@Medicaring.org (Speaking on my own, not for US government policy)

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How Americans Die: A Century of Change 1900 2000 Age at death 46 years 78 years Top Causes Infection Cancer Accident Organ system failure Childbirth Stroke/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 Coming to the end of life has always been part of the human condition; but only in the past half-century have Americans usually lived for many months with substantial and progressive disability before dying. Just a century ago, the time from onset of fatal illness to death was usually measured in hours or days. In contrast, most of us now get to live into old age – our report to the Medicare Payment Advisory Commission showed that 83% of us die while covered by Medicare – and nine out of ten Medicare beneficiaries have chronic heart or lung disease, cancer, stroke, or dementia in the last year of life. Those conditions usually cause disability for a few years before death. Mostly, Americans now get to grow old and to live with serious chronic illnesses for a long time before death. Most researchers and commentators see the shortcomings of care at the end of life as arising from physician arrogance or ineptness, from patient passivity or ignorance, or from the need for better therapeutics – as if good health could always be restored if treatment were clever enough. However, no improved medical care can thwart the human condition, which eventually entails serious illness and death; and blaming the patients or physicians presumes that these individuals could simply choose to act differently, despite strong social structures. Instead, society should trace the problems to our collective unfamiliarity and continued use of habits that arose to meet the needs of a different population. By acknowledging society’s need for new insights and shared exploration, this better concept helps build the will to make change and avoids blame or arrogance. Having a time of progressive disability at the end of life is unfamiliar, so society will need to explore new insights and arrangements through innovation and research.

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

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

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.

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?

Lewis and Clark – leaving St Louis, May 1804

Pushing for Reform THE BUSINESS CASE: THE AIM: THE STRATEGIES: 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

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

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

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

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

Tailor Care to Populations…

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

We have much to learn and little time

Map of the US, 1802

Map of the United States, 1826

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

Some Resources for Reform Transitions - http://www.cfmc.org/value/co/index.htm Patients and families Web – www.growthhouse.org 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)