Opportunities for Innovation In Clinical Research NIH “IPPCR” Course November 30, 2004

1. Opportunities for Innovation In Clinical Research NIH “IPPCR” Course November 30, 2004 Joanne Lynn, MD, MA, MS, Washington Home Center for Palliative Care Studies and RAND Health – Jlynn@medicaring.org

2. How Americans Die: A Century of Change 19002000 Age at death46 years78 years Top CausesInfection Cancer Accident Organ system failure Childbirth Stroke/Dementia DisabilityNot much 2-4 yrs before death FinancingPrivate, Public and substantial- modest83% in Medicare ~½ of women die in Medicaid

3. What is the likelihood of survival on the days just before dying? 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

4. 1.0 CHF 0.8 0.6 0.4 Lung Cancer 0.2 0.0 6 5 4 3 2 1 Median Prognosis by Day Before Death for Lung Cancer and CHF, in SUPPORT Median 2-month Survival Estimate Days before Death

5. 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(from SUPPORT, for both model and physician estimate) • Severity of patient condition dictates needs • Most patients need both disease-modifying treatments and help to live well with fatal disease

6. Estimate of lifespan distribution of costs

7. Traditional Organization of Treatment Possibilities Settings Diseases

8. 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

9. Divisions by Health Status, in the Population and Among Persons with Eventually Fatal Chronic Illness Chronic, consistent with usual role A Healthy B Chronic, progressive, eventually fatal illness C

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

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

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

13. Old Concept death Treatment Aggressive Care Palliative Care Time

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

15. Opportunities for Innovative Research? • Describe the trajectories, test for crossover • Model the optimum services, estimate cost • Discern payment characteristics – N for stable estimate, outliers, adverse incentives • Assess psychological aspects of reform • Develop methods to monitor effects on lifespan • ETC.

16. Treatment

17. Examples of Aims • Within six months, reduce resident transfers from our nursing home to the hospital in the last week of life to less than 20% of all who will die • To decrease the number of patients with advanced disease transferred from home hospice or nursing home to the acute care setting at end-of-life by 50% by May Treatment

19. Percent of Patients Who Can Verbalize Self-Management Techniques Tucson Medical Center (n =32) ‘99

20. Percent of Exacerbations Requiring Emergency Room CareHospice of Winston-Salem (N=13 to 24)

21. Opportunities for Innovative Research? • Symptom research, implementation • Caregiver support – paid and family • Advance care planning – to do and IT • Hospice services, limits, substitutes • CQI reliability, validity, generalizability • Strategies for planned change generally • Measures of quality nearing death

22. US Hospitalist PhysiciansViews on Terminal Sedation Lynn, Goldstein, Annals Int Med, May 20,2003

23. Ideas to Alter the Status Quo • Serious chronic illness makes patients too sick for hospitalization. • Ordinary patterns of care are appropriately classified as errors and threats to safety. • High-cost treatments and caregiver shortage will create opportunities for disaster or for creative responses. • Choice is important, but less important than having at least one reliable service package. • The most scarce element in reform is the WILL to start. • We suffer from lack of stories…

24. Resources • For the public- • Web – www.growthhouse.org • Book – Handbook for Mortals • For quality improvement – • Book – Improving Care for the End of Life • Web – www.medicaring.org • For Policy • Web – www.abcd-caring.org • Exchange - Am. for Better Care of the Dying

25. Orbis Terrarum, 1675 by Visscher