Estimates were weighted. Sample included family and other unpaid caregivers providing self-care or mobility help to an older adult in the last month of life (end-of-life caregivers) and those providing help to an older adult in the last month (other caregivers). Sample was limited to the two-thirds of end-of-life caregivers (1.6 million of 2.5 million [64.0%] weighted) and nearly half of other caregivers (4.3 million of 9.0 million [48.5%] weighted) who reported that they spoke with or emailed older adults’ health care workers in the past year. The unweighted proportion of end-of-life and other family and unpaid caregivers reporting their experiences of being listened to was 194 of 287 and 572 of 1084, respectively; of being asked about understanding, 194 and 571, respectively; and of being asked about needing help managing older adults’ treatments, 193 and 565, respectively.
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Wolff JL, Freedman VA, Ornstein KA, Mulcahy JF, Kasper JD. Evaluation of Hospice Enrollment and Family and Unpaid Caregivers’ Experiences With Health Care Workers in the Care of Older Adults During the Last Month of Life. JAMA Netw Open. 2020;3(4):e203599. doi:10.1001/jamanetworkopen.2020.3599
The care needs of older adults nearing end of life are extensive and variable, commonly encompassing help with self-care, medical tasks, symptom management, and high-stakes decisions.1 Although this demanding work is typically undertaken by family caregivers1,2 and increasingly occurs in partnership with hospice care,3 little is known about the experience of end-of-life and other caregivers when interacting with health care workers and whether end-of-life caregiving differs based on older adults’ use of hospice. This study draws on national survey data to assess end-of-life caregivers’ experiences in older adults’ last month of life.
We examined the 2017 National Health and Aging Trends Study (NHATS), a survey of Medicare beneficiaries aged 65 years and older, and the National Study of Caregiving (NSOC), which interviews caregivers of NHATS participants.4 Participants in NHATS provided written consent, and participants in NSOC provided verbal consent. Both surveys followed American Association for Public Opinion Research (AAPOR) reporting guideline, which includes partial interviews. Both surveys were approved by the institutional review board at the Johns Hopkins Bloomberg School of Public Health. We assessed measures that have been previously identified as important to caregiver experiences when interacting with health care workers5 and during end-of-life care.6 Between-group differences were tested using 1-tailed Rao-Scott χ2 tests, with statistical significance set at P < .05. Analyses were completed using SAS version 9.4 (SAS Institute). We applied design variables and report weighted estimates that account for different probabilities of selection and response.
We examined responses from 1374 NSOC respondents providing self-care or mobility assistance to older adults living in residential care or community settings in 2017. Of an estimated 11.4 million family and unpaid caregivers, 2.5 million (21.5%) assisted during the last month of life. End-of-life and other caregivers reported that older adults’ health care workers always or usually listened (87.8% [SE, 2.5%] and 89.7% [SE, 1.6%], respectively; P = .41) and asked about their understanding of older adults’ health treatments (82.8% [SE, 3.2%] and 72.2% [SE, 3.0%], respectively; P = .02) (Figure). End-of-life caregivers were more likely than other caregivers to report being always or usually asked about needing help managing older adults’ treatments (47.0% [SE, 4.8%] and 29.9% [SE, 2.9%], respectively; P = .001); 1 in 3 end-of-life caregivers (32.3% [SE, 4.2%]) were never asked.
Nearly half (48.0% [SE, 4.5%]) of end-of-life caregivers assisted an older adult who received 3 or more days of hospice (Table). Few differences in caregiver experiences were observed based on older adults’ hospice use. When reflecting on the last month of life, most caregivers reported being always or usually treated with respect (94.3% [SE, 1.7%]) and kept informed about older adults’ conditions (91.7% [SE, 1.8%]). Approximately 2 in 3 end-of-life caregivers (69.0% [SE, 3.4%]) reported talking with older adults about preferred medical care. More than half of end-of-life caregivers (51.4% [SE, 3.6%]) made medical decisions; approximately 1 in 10 reported decisions were made that they did not want (8.5% [SE, 1.7%]) or without enough input (9.5% [1.9%]). End-of-life caregivers commonly managed symptoms of anxiety or sadness (76.6% [SE, 3.9%]), pain (54.6% [SE, 4.3%]), and breathing (37.1% [SE, 3.8%]); these caregivers were more likely to receive training if the older adult was enrolled in hospice (56.2% [SE, 4.9%] vs 42.0% [SE, 3.9%]; P = .03).
This national survey study found that end-of-life caregivers commonly assisted with symptom management and participated in medical decision-making. End-of-life caregivers generally reported favorable experiences of communication with health care workers, but there were gaps: 1 in 3 were never asked by health care workers if they needed help managing care, and just half of caregivers who assisted with symptom management received training. While training was more common among caregivers assisting older adults enrolled in hospice, findings indicate room for improvement.
End-of-life care increasingly involves hospice and occurs in the community; however, concerns about delayed hospice enrollment and burdensome end-of-life care persist.1,3,6 This study does not provide insight into specific factors affecting caregiver experiences or hospice enrollment. Nevertheless, the findings substantiate the feasibility and importance of monitoring the experiences of family members, who are often heavily involved in end-of-life care.2 Enhanced assessment of the end-of-life caregiving experience will be possible via annual NSOC data collection, beginning in 2021.
Accepted for Publication: February 26, 2020.
Published: April 29, 2020. doi:10.1001/jamanetworkopen.2020.3599
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Wolff JL et al. JAMA Network Open.
Corresponding Author: Jennifer L. Wolff, PhD, Department of Health Policy and Management, Roger C. Lipitz Center for Integrated Health Care, Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, Room 692, Baltimore, MD 21205 (firstname.lastname@example.org).
Author Contributions: Drs Wolff and Mulcahy had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Wolff, Ornstein.
Acquisition, analysis, or interpretation of data: Wolff, Freedman, Mulcahy, Kasper.
Drafting of the manuscript: Wolff, Ornstein, Kasper.
Critical revision of the manuscript for important intellectual content: Freedman, Ornstein, Mulcahy, Kasper.
Statistical analysis: Wolff, Mulcahy, Kasper.
Obtained funding: Wolff, Freedman, Kasper.
Conflict of Interest Disclosures: Dr Wolff reported receiving grants from the National Institute on Aging, the John A. Hartford Foundation, and the Commonwealth Fund outside the submitted work. Dr Freedman reported grants from National Institute on Aging during the conduct of the study. Dr Kasper reported grants from National Institute on Aging during the conduct of the study. No other disclosures were reported.
Funding/Support: This study was supported by grants U01AG032947, R01AG047859, and R01AG054004 from the National Institute on Aging.
Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
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