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Defining and Reforming “End of Life” Care

Explore the need for reform in end-of-life care, highlighting the high costs, unreliable care, and lack of political leadership. Discover proposed changes and the impact on patients.

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Defining and Reforming “End of Life” Care

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  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 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 and substantial- modest 83% in Medicare ~½ of women die in Medicaid

  5. Good Models to Predict Survival Time Show Remarkable Ambiguity Near Death 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 Medians of Predictions Estimated from Data on These Days before Death

  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. Time Old Concept death Treatment Aggressive Care Palliative Care

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

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

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

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

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

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

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

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

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

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

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

  19. Surprises Symptoms Gaps What Good Care Systems Should PROMISE Correct Rx Help to live fully Customize Family Role

  20. Population Characteristics Priority Concerns 1. Healthy Stay well 2. Chronic condition Prevent or delay progression 3. Maternal and infant Safe start 4. Stable, disabled Life opportunities 5. Acutely ill Get 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

  21. 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

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