1. Factors Associated with Family Caregivers’ Experience of End of Life Care Academy Health Annual Meetings June 28, 2005 Anne Wilkinson, Ph.D.. Rand Health Washington, DC

2. Rand Health 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 Place of CareHomeHome

3. Rand Health National Institute for Nursing Research (NINR) Agency for Healthcare Research and Quality (AHRQ) NIH State of the Science Conference on End of Life Care December, 2004 www.ahrqpubs.ahrq Evidence Based Practice Publications Publication #: 05-E004-1; 05-E004-2

4. Rand Health Systematic Review Research Questions What is the scope of the “end of life” population? What outcomes are valid indicators of the quality of the end of life experience for dying persons and surviving family? What patient, family, and health care system factors are associated with better or worse outcomes? What processes and interventions are associated with improved or worsened outcomes? What are future research questions for improving end of life care?

5. Rand Health Health Status of the Population (a conceptual model) Majority Healthy: Need acute and preventive care Chronic Illness consistent with usual role: need acute and preventive care Chronic, progressive, eventually fatal illness Need variety of services and priorities 1-2% <65 and 3-5% 65+

6. Rand Health Medicare Decedents Other 9% Sudde n 7% Heart and Lung Failure 16% Cancer 22% Frail 46% Lunney JR, Lynn J, Hogan C: Profiles of Elderly Medicare Decedents. JAGS, 50:1108-1112, 2002.

7. Rand Health Time Onset of incurable cancer -- Often a few years, but decline usually < 2 months “Terminal Illness” Trajectory Function Death High Low Cancer Possible hospice enrollment Center for Palliative Care Studies

8. Rand Health Organ System Failure Trajectory Time Function Death High Low Begin to use hospital often, self-care becomes difficult ~ 2-5 years, but death usually seems “sudden” (mostly heart and lung failure) Infrequent or Late Referral to Hospice Center for Palliative Care Studies

9. Rand Health Time Onset could be deficits in ADL, speech, ambulation Quite variable - up to 6-8 years Death High Low Dementia/Frailty Trajectory Function Infrequent or Late Referral to Hospice Center for Palliative Care Studies

10. Rand Health Definition of “End of Life” 1.Very sick (disabled, dependent, debilitated) 2.Generally getting worse 3.Will die, most likely from progression of current illness NOT just those who are sure to die soon e.g., “hospice eligible” or “terminally ill”

11. Rand Health Data Sources/Key Words  Medline  Database of Reviews of Effects (DARE)  The National Consensus Project for Palliative Care (NCP)  National Institute for Clinical Excellence (NICE)  Health Canada Keywords: Palliative Care / End of Life Care  Quality of life, quality of care, quality of death, satisfaction, pain, other symptoms, diagnosis, etc.;  Measures/Measurement;  Individual, patient, caregiver (caregiving), health system factors;  Recent systematic reviews

12. Rand Health Methods  8 researcher reviewers (6 w/ clinical backgrounds in EOL)  Screened titles using criteria & exclusions (e.g., not 18 years of age, not EOL, clinical trials of chemotherapy, radiotherapy, surgery, after 1990, etc.)  1 reviewer per topic area; All reviewers similarly trained; One PI served as “gold standard” reviewer  Systematic Reviews/Meta-analyses– 2 reviewers using established criteria and consensus as final judgment  Intervention/Observational Studies: good, fair, or poor quality using Jadad guidelines -- 0-5 score based on:  Was study randomized?  Was study described as double-blind?  Was there a description of withdrawals/dropouts?

13. Rand Health Data Extraction  24,423 citations from all sources  6,381 titles were reviewed  1,289 abstracts were reviewed (all topics)  911 articles were reviewed, including  95 systematic reviews  134 intervention studies  682 observational studies (samples larger than 30)

14. Rand Health ELEMENTS ASSOCIATED WITH FAMILY EXPERIENCE, ESPECIALLY CAREGIVING  911 articles: 18 High Quality Systematic Reviews of Caregiving, 23 Intervention Studies on Caregiving 134 Observational Studies of Caregiving  Final Report includes:  8 High Quality Systematic Reviews  13 Intervention Studies  17 Observational Studies on caregiving to cancer, dementia, and organ system failure patients

15. Rand Health Facts About Caregivers  Approximately 25 million Americans – 1 in 4 adults provides some care for a relative or friend  Family caregivers provide approximately 80% of all long- term services and supports for family members across the lifespan  Most caregivers are themselves middle aged or older  Most caregivers are women (73% vs. 23% male)  Informal caregiving slightly higher in African-American and Hispanic families  Average number of hours/week: 20.5 w/ 25% of caregivers reporting spending 21-59 hours/week and 16% report spending “constant care.”

16. Rand Health Results  Literature emphasized Cancer & Dementia caregiving at EOL-spanned all levels of severity  Overall – small to moderate positive effects for the caregiver – primarily on satisfaction but not burden, unmet need, HRQoL, decision-making, etc. vs. “usual care”  Effects varied by type/intensity of intervention, setting: Largest effects found for intensive home care vs. ill- defined care coordination or low intensity home visits  No impact for single component interventions (individual/group education, counseling, some case management, etc.)  Small – moderate positive effects for multi-component interventions/respite

17. Rand Health Summary  The literature review identified evidence to support the effectiveness of interventions to: improve satisfaction; ameliorate cancer pain, relieve depression in cancer, non-pharmacologic interventions for behavioral problems in dementia, and foster continuity  Evidence is strongest in cancer reflecting the degree to which palliative care has already been integrated into the research agenda and clinical practice of oncology.  Some evidence supporting the association of palliative care: satisfaction and quality of care with pain management, communication, practical support and enhanced caregiving (not burden)  No one single service model appears to work for a broad range of caregivers – different needs for different CG trajectories  High levels of psychological morbidity/unmet need reveal limited scope of the interventions for caregivers

18. Rand Health Limits of Caregiver Research  Lack of strong outcome evaluation designs and a reliance on descriptive and formative evaluations  Reliance on small sample sizes / convenience samples.  Non-randomization and sample homogeneity  Interventions vary widely and caregivers were rarely screened for problems or need  Confusion concerning the operationalization and measurement of major caregiver outcomes  Diversity in length/duration/intensity of interventions rarely tested and a better match between interventions/ outcomes needed.  Little research evaluating costs/cultural expectations of care.

19. Rand Health Future Research Needs  Increased sample sizes / heterogeneity; stronger designs  Determine whether standardized or individualized interventions produce the best caregiver outcomes  Interventions and outcomes need to be linked to caregiver needs – better specification/measurement  Determine the optimal length, duration, intensity of specific intervention strategies  Need to select outcomes that are likely to be changed by the intervention being tested.  Need to account for financial and social effects of caregiving on the caregiver and family, and address the cultural expectations of care.

20. Rand Health Home care of any type compared favorably to institutional care settings; Some studies found small and/or negative effects – even for home hospice care Review limited by literature and scope of review Identified current status of field of research at the end of life, existing research gaps and inconsistencies, and the need for additional rigorous studies Report on End of Life Care and Outcomes www.ahrqpubs.ahrq Evidence Based Practice Publications #: 05-E004-1; 05-E004-2 Take Home Message