Presentation give at the Foundation's Jan. 26 2011 Research and Policy Forum by Joanne Lynn, MD, MA, MS, author and physician.

1. Honoring the Informed Choices of People Coming to the End of Life For the Foundation for Informed Medical Decision Making, Washington, DC, January 26, 2011 Joanne Lynn, MD, MA, MS Clinical Improvement Expert Colorado Foundation for Medical Care DrJoanneLynn@gmail.com

2. Framing Our Issues Travelling the Valley of the Shadow of Death… Trajectories and categories The moral mandate for patient choice and the effectiveness of advance directives And what we could do…

3. The Opportunity – US Hospitalists on Sedation for Dyspnea Lynn, Goldstein, Annals Int Med, May 20,2003

5. How Americans Die: A Century of Change 19002000 Age at death 46 years 78 years Top Causes Infection Cancer Accident Organ system failure Childbirth Stroke/Dementia Disability Not much 2-4 yrs before death Financing Private, Public, substantial- modest in US-83%, Medicare ~½ of women, Medicaid

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

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

8. “Cancer” Trajectory, Diagnosis to Death High Possible hospice enrollment Function Death Low Onset of incurable illness Time -- Often a few years from onset, But decline usually < 2 months

9. “Organ System Failure” Trajectory High Function Death Low Begin to use hospital often, self-care becomes difficult ~ 2-5 years, but death seems “sudden” Time

10. “Frailty/Dementia” Trajectory High Function Low Death Onset could be deficits in ADL, speech, ambulation Time Quite variable - often 6-8 years

11. Who is in the Category “End of Life?” NOT “reliably short prognosis” (e.g., < 6 months) because most of us will be stable with serious illness and disability within a week or two of our deaths

12. Can we tell who will die soon? 1.0 0.8 0.6 Median 2-month Survival Estimate 0.4 0.2 0.0 7 6 5 4 3 2 1 The days just before death

13. Prognosis Stays Uncertain Through Most of the Last Part of Life 1.0 0.8 Congestive heartfailure 0.6 Median 2-month Survival Estimate 0.4 Lung cancer 0.2 0.0 7 6 5 4 3 2 1 Days before Death * From SUPPORT, 1988-93

15. With condition(s) that will not substantially improve

16. Will worsen

17. And will cause death. (No particular survival time is part of the definition)

18. The “No Surprise” Population Would it be a surprise for this person to die within six months? (or a year – doesn’t matter) If “no surprise” – then “end of life” care Priorities: planning ahead, comfort, family Optimal medical care Can continue for a few years Includes the short time when dying soon Gold Standards Framework, Britain www.goldstandardsframework.nhs.uk

19. Optimal services for the person living with (eventually) fatal illnesses Honesty, emotional support, and profound respect (not the commonplace manipulation and avoidance) Negotiating a care plan (ongoing), including planning in advance, and tailored to the patient and family Support at home Caregiver assessment, training, and support Financial and legal help Attention to transfers

20. Advance Care Planning Works POLST model www.POLST.org – 22 states LaCrosse model: www.Respecting Choices.org VA Health System Serves patient interests Reduces inappropriate utilization Alleviates family tensions and uncertainty

22. Normalizing discussion, including uncertainties and trajectories

23. Patient and family centered goals, constrained by the situation

24. Name a surrogate decision-maker if possible

25. Address CPR, perhaps artificial nutrition, and other elements customized to the situation

27. What works to start the conversation? “At this time in your life, what makes you truly happy?” Triggers that are expected – in flyers, in early visits, etc – “By the third visit after a hospitalization for heart failure, we will have a discussion of what this means for your life” “Tell me about the experience of being so short of breath”

28. Does a good dying have to be “losing the valiant battle?”

29. When hospice is available, many choose it(absolute % change in inpatient deaths by venue nationally) ~5060 veterans affected

30. Evolving Beyond the “Either-Or” Traditional Approach “Curative” care “Comfort” Care Integrated Approach Curative or restorative Palliative Support Hospice Adapted from Daniel Johnson, MD

31. How does Pall. Care Reduce EOL Costs? Fewer hospitalizations and deaths in hospital Better care coordination, more hospice, advance planning More admissions directly to PCU from ED Shorter LOS, especially in ICUs Reduce severe symptoms More transfers out of, fewer into, ICUs Less use of labs, radiology, pharmacy, blood Change, clarify goals of care

32. An especially sensitive issue…. How can anyone know that the patient’s dying was actually timely? (appropriate diagnosis and treatment – and not death from inattention, denial of treatment, or deliberate cause) Possible Answers Standards about diagnosis and severity Standards about choice and planning Autopsies Reporting concerns, threats to safety

33. A Particular Opportunity Medicare quality measures have been insensitive to preference Serious illness near the end of life requires substantial customization – that’s the standard So – we need ways to measure the quality of a customized care plan, its continuity over settings and time, its implementation FMDIM could help create the demand for this, then the tools for measurement

34. Defining Quality in Unique Situations Goals Integration Negotiated Values Plan Implement Outcomes Feedback Feedback Evaluation of Quality

35. Defining Quality for Serious Chronic Illness Outcomes at T1 Negotiated Values Plan Implement TIME Outcomes at T2 Negotiated Values Plan Implement

36. Why Bother? Suffering (unnecessarily severe) Costs (unnecessarily high) Track record of successful improvements Unpopularity of status quo So – we might have the political will to reduce suffering, improve care and reduce costs

37. Why Bother? It was my father this time, but next time it will be your father, and then you, and then your child. I have heard it said by cynics that the quality of medical care would be far better and the hazards far less if physicians, like pilots, were passengers in their own airplanes. We are. Berwick, Quality comes home. Ann Int Med 1996; 125:839-832