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Defining and Reforming “End of Life” Care For the Citizen’s Working Group on Health Care Reform Boston, Mass., August 17, 2005 Joanne Lynn [email protected] 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 By permission of Johnny Hart and Creators Syndicate, Inc. How Americans Die: A Century of Change 1900 2000 Age at death 46 years 78 years Top Causes Infection Accident Childbirth Cancer Organ system failure Stroke/Dementia Disability Not much 2-4 yrs before death Financing Private, modest Public and substantial83% in Medicare ~½ of women die in Medicaid Median 2-month Survival Estimate 1.0 Good Models to Predict Survival Time Show Remarkable Ambiguity Near Death 0.8 Congestive heart failure 0.6 0.4 Lung cancer 0.2 0.0 7 6 5 4 3 2 Medians of Predictions Estimated from Data on These Days before Death 1 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 Old Concept death Treatment Aggressive Care Time Palliative Care Better Concept death Disease-modifying “curative” Treatment Symptom management “palliative” Time Bereavement 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 Most medical knowledge has been organized by disease Hypertension Diabetes Stroke Alzheimer’s Dementia etc. The Center to Improve Care of the Dying 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 Divisions by Health Status in the Population Group 2 Group 1 Group 3 Target population for better “End of Life Care” 1. 2. 3. 4. 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) Figure 1. Divisions by Health Status in the Population and Trajectories of Eventually Fatal Chronic Illnesses Divisions in the Population Major Trajectories near Death Cancer Function High A Group 2 Low death Time High Organ System Failure B Function Group 3 Low death Time High C Dementia/Frailty Function Group 1 death Low Time Cancer Trajectory, Diagnosis to Death Cancer Function High Low death Time Organ System Failure Trajectory Function High Low death Time Function High Dementia/Frailty Trajectory death Low Time Medicare Decedents Other 9% Sudden 7% Cancer 22% Frail 46% Heart and Lung Failure 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 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 Hospitalization Care Coordination ER/ambulance Self-care MD in office Medications MD in hospital MD at home Diagnostic tests Nursing care at home “Every system is perfectly designed to get the results it gets” -----from P. Bataldin The Center to Improve Care of the Dying What Good Care Systems Should PROMISE Correct Rx Symptoms Gaps Surprises Help to live fully Customize Family Role 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) 8. EOL, long dwindling course (mostly frailty and dementia) Avoid episodes, Longevity, Control Rx, Support carers Carer support, Dignity, Skin integrity, Mobility, Housing 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