Factors Associated with Family Caregivers’ Experience of End of Life Care
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How Americans Die: A Century of Change Factors Associated with Family Caregivers’ Experience of End of Life Care 1900 2000 Age at death 46 years 78 years Top Causes Infection Accident Childbirth Cancer Organ system failure Stroke/Dementia Academy Health Annual Meetings Disability Not much 2 - 4 yrs before death June 28, 2005 Financing Private, modest Public and substantial83% in Medicare Anne Wilkinson, Ph.D.. Rand Health ~½ of women die in Medicaid Place of Care Washington, DC Home Home Rand Health Systematic Review Research Questions • National Institute for Nursing Research (NINR) • What is the scope of the “end of life” population? • Agency for Healthcare Research and Quality (AHRQ) NIH State of the Science Conference • What outcomes are valid indicators of the quality of the end of life experience for dying persons and surviving family? on End of Life Care • What patient, family, and health care system factors are associated with better or worse outcomes? December, 2004 www.ahrqpubs.ahrq • What processes and interventions are associated with improved or worsened outcomes? Evidence Based Practice Publications Publication #: 05-E004-1; 05-E004-2 Rand Health • What are future research questions for improving end of life care? Rand Health Medicare Decedents Health Status of the Population (a conceptual model) Majority Healthy: Need acute and preventive care Other 9% Chronic Illness consistent with usual role: Sudde n 7% Cancer 22% need acute and preventive care Frail 46% Chronic, progressive, eventually fatal illness Heart and Lung Failure 16% Need variety of services and priorities 1-2% <65 and 3-5% 65+ Rand Health Rand Health Lunney JR, Lynn J, Hogan C: Profiles of Elderly Medicare Decedents. JAGS, 50:1108-1112, 2002. © 2000 Institute for Healthcare Improvement Organ System Failure Trajectory “Terminal Illness” Trajectory Cancer (mostly heart and lung failure) High High Function Function Possible hospice enrollment Death Low Onset of incurable cancer Rand Health Time -- Often a few years, but decline usually < 2 months Center for Palliative Care Studies Infrequent or Late Referral to Hospice Low Death Begin to use hospital often, self-care becomes difficult Function Infrequent or Late Referral to Hospice Low Death Onset could be deficits in ADL, speech, ambulation Rand Health Time Center for Palliative Care Studies 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” Quite variable up to 6-8 years Center for Palliative Care Studies Rand Health Methods 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 Rand Health ~ 2-5 years, but death usually seems “sudden” Rand Health Dementia/Frailty Trajectory High Time 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? Rand Health © 2000 Institute for Healthcare Improvement 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) 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 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 longterm 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.” Rand Health Summary 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 Rand Health Effects varied by type/intensity of intervention, setting: Largest effects found for intensive home care vs. illdefined 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 Rand Health The literature review identified evidence to support the effectiveness of interventions to: improve satisfaction; 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” 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. Rand Health © 2000 Institute for Healthcare Improvement 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. Rand Health Take Home Message • 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 Rand Health © 2000 Institute for Healthcare Improvement
