1. 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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© Copyright 2003, Onion, Inc., All rights reserved.

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

4. How Americans Die: A Century of Change
Age at death 46 years 78 years
Top Causes Infection Cancer
Accident Organ system failure
Childbirth Stroke/Dementia
Disability Not much 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.

5. 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

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: 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

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…

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)