Making the Model T: From Prototypes to Routine Good Care for ‘Fatal Chronic Illness’

1. Making the Model T:From Prototypes to Routine Good Care for ‘Fatal Chronic Illness’ Joanne Lynn, MD, MA, MS Director, The Washington Home Palliative Care Institute President, Americans for Better Care of the Dying www.medicaring.org; www.abcd-caring.orgMay 2002

2. Target population for better “End of Life Care” • Very sick (disabled, dependent, debilitated) • Generally getting worse • Will die, most likely from progression of current illness • (NOT – those who are sure to die soon)

3. Time Old Concept death Treatment Aggressive Care Palliative Care

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

5. Multivariable Models for Very Sick Patients Cannot Predict Time of Death Precisely 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. Health Status of the Population(a conceptual model) Chronic Illnessconsistent with usual role – need acute and preventive care HealthyNeed acute and preventive care Chronic, progressive,eventually fatal illness Need variety of services and priorities 1-2% <65 yo, 3-5% >65 yo

7. Rough Estimate of Costs per Decile over the lifespan* thousands Deciles • *Places all costs of normal reproduction with the babies. • Estimates are medians of estimates of physicians and policy researchers in a convenience sample, except for the last decile, • The last decile’s estimate are derived from Lubitz et al and from MedPAC report 2000.

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

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

10. “Cancer” Trajectory, Diagnosis to Death Cancer High Possible hospice enrollment Function Low Death Onset of incurable cancer Time -- Often a few years, but decline usually < 2 months

11. Organ System Failure Trajectory (mostly heart and lung failure) High Function Low Death Begin to use hospital often, self-care becomes difficult Time ~ 2-5 years, but death usually seems “sudden”

12. Dementia/Frailty Trajectory High Function Low Death Onset could be deficits in ADL, speech, ambulation Time Quite variable - up to 6-8 years

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

14. Creating the Will for Change • Publicize local gems and national “best practices” (see “Promises to Keep” and “Improving Care for the End of Life”) • Public education – media, internet, brochures • Measure local performance

15. Make Improvements Happen • Support regional quality improvement • Lead regional cooperation in practices, standards, forms • Create authorities with population scope (and data) • Advocate for and fund innovation and evaluation • Institute special programs -- care management or caregiver training and support

16. Make Improvement Sustainable • Pay for or publicize good performance • Pay MUCH less for easily spotted poor performance – no advance care planning, or untreated pain, or low rates of use of hospice • Change Medicare payment – part of legislative agenda • Develop feedback loops that inform practitioners about individual patients and general performance • Create regional information systems • Create regional 24/7 on-call with nurses to the home/nursing home • Train aides, professionals

17. Current Priorities for Medicare Reform • Caregiver support – allow caregiver buy-in to Medicare, tax credits, training, pay, respite • Risk adjust by severity (not just diagnosis) for Medicare managed care • Develop societally supported methods to limit use of high-cost but effective treatments like defibrillators and engineered drugs • Correct the misleading categorizations of cause of death and diagnoses in the last phase of life – e.g., heart failure and coronary artery disease • Pay less for inept care – for failing to make plans, or failing to treat pain • Develop epidemiology to track changes over time and compare populations • Make shortcomings and improvements visible to professionals and the public

18. Summary on making “end of life” a national priority condition • Large Population – and doubling in the next quarter century. • Care is unreliable and often harmful. • Better care arrangements are known or could readily be learned. • Costs of reliably good care are probably not much different. • Reform requires forging the will to drive change. • Therefore – a promising priority condition.