ArticleHealth affairs (Project Hope)2017
A National Profile Of End-Of-Life Caregiving In The United States.
Article in Health affairs (Project Hope), 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 94 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
94 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review.BMC palliative care · 2020Pooled it
- Improving palliative and end-of-life care with machine learning and routine data: a rapid review.HRB open research · 2019Pooled it
- Caregiver speaks: a randomized controlled trial of a storytelling intervention for hospice family caregivers of persons with dementia.The Gerontologist · 2026Trial
- A Hospice Intervention for Caregivers: Improving Home Hospice Management of End-Of-Life Symptoms (I-HoME) Pilot Study.Journal of the American Geriatrics Society · 2025Trial
- When Is the Best Time to Deliver Supportive Interventions to Hospice Family Caregivers? A Multi-Method Study.The Gerontologist · 2025Trial
- Insomnia Symptoms Among Hospice Family Caregivers: Prevalence and Association with Caregiver Mental and Physical Health, Quality of Life, and Caregiver Burden.The American journal of hospice & palliative care · 2023Trial
- Professional and family caregivers' perceptions of death literacy in end-of-life home care: a qualitative study.BMJ open · 2026Article
- Hospice Use and Spiritual Support for Family and Friend Caregivers at the End of Life and During Bereavement.The American journal of hospice & palliative care · 2026Observational
- Medicare Advantage Prior-Authorizations Are Linked to Racial Differences in End-of-Life Home Health Use.Journal of the American Geriatrics Society · 2026Article
- Article
- Caregiving across distances: residential proximity, care activities, and mental health.The Gerontologist · 2026Article
- Caregiver Availability and Racial Differences in End-Of-Life Care Quality: Evidence From the National Health and Aging Trends Study 2017-2024.Journal of the American Geriatrics Society · 2026Article
- Observational
- Addressing the critical palliative care gaps in ethnic minority regions of low- and middle-income countries: a focus group study.BMC medicine · 2026Article
- Caregivers for people in their last year of life.CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2026Article
- Role of Sense of Coherence in Mediating the Relationship Between End-of-Life Caregiving Burden and Bereavement Depressive-Symptom Trajectory.The journal of nursing research : JNR · 2026Article
- Differences in patient access to and utilization of caregiving services: a scoping review.BMC health services research · 2026Article
- Misperception, self-reported probabilities and long-term care insurance take-up in the United States.International journal of health economics and management · 2026Article
- Structural determinants of Medicaid enrollment in late life.The journals of gerontology. Series B, Psychological sciences and social sciences · 2026Article
- A nation of caregivers: past, present, and future expectations of caregiving.Health affairs scholar · 2026Article
34 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.