1. Defining and Reforming “End of Life” Care For the Citizen’s Working Group on Health Care Reform Boston, Mass., August 17, 2005 Joanne Lynn Jlynn@RAND.org

2. Why target “end of life” care to reform health care policy? It’s big – probably about 1/3 of lifetime expenses, and most of the lifetime’s suffering with ill health It’s bad – care is unreliable, often harmful It’s ugly – no political leadership yet has the will to confront the challenges of frailty, dementia, caregiver burden, supportive housing, impoverishment

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

4. How Americans Die: A Century of Change 1900 2000 Age at death46 years78 years Top CausesInfectionCancer AccidentOrgan system failure ChildbirthStroke/Dementia Disability Not much 2-4 yrs before death Financing Private, Public and substantial- modest 83% in Medicare ~½ of women die in Medicaid

5. Good Models to Predict Survival Time Show Remarkable Ambiguity Near Death Medians of Predictions Estimated from Data on These Days before Death Median 2-month Survival Estimate 0.0 0.2 0.4 0.6 0.8 1.0 7654321 Lung cancer Congestive heart failure

6. Severity of Illness, not Prognosis Prognosis often uncertain, right up to the end of life  Median patient with serious chronic heart failure has 50-50 chance to live 6 months on the day before death Severity of patient condition dictates needs Most patients need both disease-modifying treatments and help to live well with disease

7. death Palliative Care Treatment Aggressive Care Time Old Concept

8. death Symptom management “palliative” Treatment Disease-modifying “curative” Time Better Concept Bereavement

9. The Center to Improve Care of the Dying Most health care provision has been organized by program/site Hospital Doctor’s office Nursing home Hospice etc.

10. The Center to Improve Care of the Dying Most medical knowledge has been organized by disease Hypertension Diabetes Stroke Alzheimer’s Dementia etc.

11. The Center to Improve Care of the Dying Quality = performance in one setting, one disease Hospital Doctor’s office Nursing home Hospice etc. Medical category Service category Hypertension Diabetes Stroke Dementia etc. But people with serious chronic illness have multiple diagnoses and need multiple service settings

12. Divisions by Health Status in the Population Chronic, not “serious” “Healthy,” needs acute and preventive care Chronic, progressive, eventually fatal illness Group 2 Group 1 Group 3

13. Target population for better “ End of Life Care ” 1.Very sick (disabled, dependent, debilitated) 2.Generally getting worse 3.Will die without a period of being well again 4.Most likely will die from progression of current illness(es)

14. Divisions in the Population Major Trajectories near Death Chronic, not “serious” “Healthy,” needs acute and preventive care Chronic, progressive, eventually fatal illness Figure 1. Divisions by Health Status in the Population and Trajectories of Eventually Fatal Chronic Illnesses Group 2 Group 1 Group 3 A B C

18. Medicare Decedents Other 9% Sudden 7% Heart and Lung Failure 16% Cancer 22% Frail 46%

19. MediCaring Proposal – Core elements Eligibility – thresholds of severity Services –  comprehensiveness  continuity  mostly at home Coverage – includes capitation or salary/budget Quality - measured and reported

20. Medicare Coverage of Services, Contrasted with Importance to “end of life” Patients Medicare Covers Well – But Less Important Hospitalization ER/ambulance MD in office MD in hospital Diagnostic tests Care Coordination Self-care Medications MD at home Nursing care at home Medicare Mostly Does Not Cover – But Very Important

21. “Every system is perfectly designed to get the results it gets” -----from P. Bataldin The Center to Improve Care of the Dying

22. What Good Care Systems Should PROMISE Help to live fully Correct R x Family Role Customize SymptomsGapsSurprises

23. Population Characteristics Priority Concerns 1. HealthyStay well 2. Chronic conditionPrevent or delay progression 3. Maternal and infantSafe start 4. Stable, disabledLife opportunities 5. Acutely illGet well 6. EOL, short decline near death (mostly cancer) Symptoms, Dignity, Control, Life closure, Reliability 7. EOL, intermittent exacerbations with sudden dying (mostly heart/lung failure) Avoid episodes, Longevity, Control Rx, Support carers 8. EOL, long dwindling course (mostly frailty and dementia) Carer support, Dignity, Skin integrity, Mobility, Housing

24. Changing Policy and Practice Require continuity, 24/7, advance planning –Conditions of participation or enhanced payment Value comfort and control –Reporting for quality Enhance relationships, closure, spirituality –Reporting for quality Support family and paid direct caregivers –Financial security, health insurance, training