Scant research has examined the relationship between family characteristics and end-of-life (EOL) outcomes despite the importance of family at the EOL.
Objectives:
This study examined factors associated with the size and composition of family relationships on multiple EOL hospitalizations.
Design:
Retrospective analysis of the Utah Population Database, a statewide population database using linked administrative records.
Setting/subjects:
We identified adults who died of natural causes in Utah, United States (n = 216,913) between 1998 and 2016 and identified adult first-degree family members (n = 743,874; spouses = 13.2%; parents = 3.6%; children = 51.7%; siblings = 31.5%).
Measurements:
We compared demographic, socioeconomic, and death characteristics of decedents with and without first-degree family. Using logistic regression models adjusting for sex, age, race/ethnicity, marital status, comorbidity, and causes of death, we examined the association of first-degree family size and composition, on multiple hospitalizations in the last six months of life.
Results:
Among decedents without documented first-degree family members in Utah (16.0%), 57.7% were female and 7 in 10 were older than 70 years. Nonmarried (aOR = 0.90, 95% CI = 0.88–0.92) decedents and decedents with children (aOR = 0.97, 95% CI = 0.94–0.99) were less likely to have multiple EOL hospitalizations. Family size was not associated with multiple EOL hospitalizations.
Conclusions:
First-degree family characteristics vary at the EOL. EOL care utilization may be influenced by family characteristics—in particular, presence of a spouse. Future studies should explore how the quality of family networks, as well as extended family, impacts other EOL characteristics such as hospice and palliative care use to better understand the EOL care experience.
Get full access to this article
View all access options for this article.
References
1.
AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP; 2020.
2.
OrnsteinKA, KelleyAS, Bollens-LundE, WolffJL: A national profile of end-of-life caregiving in the United States. Health Aff, 2017; 36:1184–1192.
3.
AngusDC, BarnatoAE, Linde-ZwirbleWT, et al.: Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med, 2004; 32:638–643.
4.
Institute of Medicine:. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press, 2015.
5.
StajduharKI, FunkL, ToyeC, et al.: Part 1: Home-based family caregiving at the end of life: A comprehensive review of published quantitative research (1998–2008). Palliat Med, 2010; 24:573–593.
6.
KelleyAS, McGarryK, Bollens-LundE, et al.: Residential setting and the cumulative financial burden of dementia in the 7 years before death. J Am Geriatr Soc, 2020; 68:1319–1324.
7.
LaValleySA: End-of-life caregiver social support activation: The roles of hospice clinicians and professionals. Qual Health Res, 2018; 28:87–97.
8.
National Academies ofSciences, Engineering, and Medicine: Families Caring for an Aging America. Washington, DC: National Academies of Sciences, Engineering, and Medicine, 2016.
9.
GomesB, CalanzaniN, GyselsM, et al.: Heterogeneity and changes in preferences for dying at home: A systematic review. BMC Palliat Care, 2013; 12:7.
10.
LageDE, DuMontierC, LeeY, et al.: Potentially burdensome end-of-life transitions among nursing home residents with poor-prognosis cancer. Cancer, 2020; 126:1322–1329.
11.
DuncanI, AhmedT, DoveH, et al.: Medicare cost at end of life. Am J Hosp Palliat Care, 2019; 36:705–710.
12.
AldridgeMD, KelleyAS: The myth regarding the high cost of end-of-life care. Am J Public Health, 2015; 105:2411–2415.
13.
Cardona-MorrellM, KimJCH, BrabrandM, et al.: What is inappropriate hospital use for elderly people near the end of life? A systematic review. Eur J Intern Med, 2017; 42:39–50.
14.
Cohen-MansfieldJ, Skornick-BouchbinderM, BrillS: Trajectories of end of life: A systematic review. J Gerontol B Sci Soc Sci, 2017; 73:564–572.
15.
KaranthS, RajanSS, SharmaG, et al.: Racial-ethnic disparities in end-of-life Care quality among lung cancer patients: SEER-Medicare based study. J Thorac Oncol, 2018; 13:1083–1093.
16.
MiesfeldtS, MurrayK, LucasL, et al.: Association of age, gender, and race with intensity of end-of-life care for Medicare beneficiaries with cancer. J Palliat Med, 2012; 15:548–554.
17.
MillerSC, LimaJC, IntratorO, et al.: Palliative care consultations in nursing homes and reductions in acute care use and potentially burdensome end-of-life transitions. J Am Geriatr Soc, 2016; 64:2280–2287.
18.
WagnerE, PatrickDL, KhandelwalN, et al.: The influence of multimorbidity on health care utilization at the end of life for patients with chronic conditions. J Palliat Med, 2019; 22:1260–1265.
19.
SudoreRL, CasarettD, SmithD, et al.: Family involvement at the end-of-life and receipt of quality care. J Pain Symptom Manage, 2014; 48:1108–1116.
20.
SpillmanBC, FreedmanVA, KasperJD, WolffJL: Change over time in caregiving networks for older adults with and without dementia. J Gerontol B Psychol Sci Soc Sci, 2020; 75:1563–1572.
21.
Holt-LunstadJ: The potential public health relevance of social isolation and loneliness: Prevalence, epidemiology, and risk factors. Public Policy Aging Rep, 2018; 27:127–130.
22.
ValtortaNK, MooreDC, BarronL, et al.: Older adults' social relationships and health care utilization: A systematic review. Am J Public Health, 2018; 108:e1–e10.
23.
ManemannSM, ChamberlainAM, RogerVL, et al.: Perceived social isolation and outcomes in patients with heart failure. J Am Heart Assoc, 2018; 7:e008069.
24.
Rico-UribeLA, CaballeroFF, Martín-MaríaN, et al.: Association of loneliness with all-cause mortality: A meta-analysis. PLoS One, 2018; 13:e0190033.
25.
HayfordSR: Marriage (still) matters: The contribution of demographic change to trends in childlessness in the United States. Demography, 2013; 50:1641–1661.
26.
CherlinAJ: Demographic trends in the United States: A review of research in the 2000s. J Marriage Fam, 2010; 72:403–419.
27.
PietromonacoPR, UchinoB, Dunkel SchetterC: Close relationship processes and health: Implications of attachment theory for health and disease. Health Psychol, 2013; 32:499–513.
28.
AntonucciTC, AjrouchKJ, BirdittKS: The convoy model: Explaining social relations from a multidisciplinary perspective. Gerontologist, 2014; 54:82–92.
29.
FullerHR, AjrouchKJ, AntonucciTC: The convoy model and later-life family relationships. J Fam Theory Rev, 2020; 12:126–146.
30.
LeonardR, HorsfallD, RosenbergJ, NoonanK: Carer experience of end-of-life service provision: A social network analysis. BMJ Support Palliat Care, 2020; 10:e20.
31.
PlickNP, AnkudaCK, MairCA, et al.: A national profile of kinlessness at the end of life among older adults: Findings from the Health and Retirement Study. J Am Geriatr Soc 2021.
32.
ArbeevaLS, HansonHA, ArbeevKG, et al.: How well does the family longevity selection score work: A validation test using the Utah Population Database. Front Public Health, 2018; 6:277–277.
33.
KristensenMS, ThygesenLC, TayDL, et al.: Size and composition of family networks of decedents: A nationwide register-based study. Palliat Med, 2021:0269216321998602.
34.
LupoPJ, DanyshHE, PlonSE, et al.: Family history of cancer and childhood rhabdomyosarcoma: A report from the Children's Oncology Group and the Utah Population Database. Cancer Med, 2015; 4:781–790.
35.
NortonMC, HatchDJ, MungerRG, SmithKR: Family member deaths in childhood predict systemic inflammation in late life. Biodemography Soc Biol, 2017; 63:104–115.
36.
NortonMC, SmithKR, ØstbyeT, et al.Early parental death and remarriage of widowed parents as risk factors for Alzheimer disease: The Cache County study. Am J Geriatr Psychiatry, 2011; 19:814–824.
37.
van den BergN, Rodríguez-GirondoM, van DijkIK, et al.: Longevity defined as top 10% survivors and beyond is transmitted as a quantitative genetic trait. Nat Commun, 2019; 10:35.
38.
CharlsonME, PompeiP, AlesKL, MacKenzieCR: A new method of classifying prognostic comorbidity in longitudinal studies: Development and validation. J Chronic Dis, 1987; 40:373–383.
39.
KoehlyLM, AshidaS, SchaferEJ, LuddenA: Caregiving networks-Using a network approach to identify missed opportunities. J Gerontol B Psychol Sci Soc Sci, 2015; 70:143–154.
40.
WaldropDP: Caregiving systems at the end of life: How informal caregivers and formal providers collaborate. Fam Soc, 2006; 87:427–437.
41.
KumarV, AnkudaCK, AldridgeMD, et al.: Family caregiving at the end of life and hospice use: A national study of Medicare beneficiaries. J Am Geriatr Soc, 2020; 68:2288–2296.
42.
PivodicL, PardonK, MiccinesiG, et al.: Hospitalisations at the end of life in four European countries: A population-based study via epidemiological surveillance networks. J Epidemiol Community Health, 2016; 70:430–436.
43.
Donzé J, Lipsitz S, Schnipper JL: Risk factors for potentially avoidable readmissions due to end-of-life care issues. J Hosp Med, 2014; 9:310–314.
44.
OrnsteinKA, MairC, KristensenMS, et al.: Kinlessness at the time of death: Implications for end-of-life decision-making. Innov Aging, 2019; 3(Suppl 1):S237–S237.
45.
OrnsteinKA, GarridoMM, SiuAL, et al.: Impact of in-hospital death on spending for bereaved spouses. Health Serv Res, 2018; 53(Suppl Suppl 1):2696–2717.
46.
AbernethyA, BurnsC, WheelerJ, CurrowD: Defining distinct caregiver subpopulations by intensity of end-of-life care provided. Palliat Med, 2009; 23:66–79.
47.
OrnsteinKA, WolffJL, Bollens-LundE, et al.: Spousal caregivers are caregiving alone in the last years of life. Health Aff, 2019; 38:964–972.
48.
OrlovicM, SmithK, MossialosE: Racial and ethnic differences in end-of-life care in the United States: Evidence from the Health and Retirement Study (HRS). SSM Popul Health, 2019; 7:100331.
GürhanN, BeşerNG, Polat ÜKoç. M: Suicide risk and depression in individuals with chronic illness. Community Ment Health J, 2019; 55:840–848.
53.
WilderCM, MillerSC, TiffanyE, et al.: Risk factors for opioid overdose and awareness of overdose risk among veterans prescribed chronic opioids for addiction or pain. J Addict Dis, 2016; 35:42–51.
WolffJL, DySM, FrickKD, KasperJD: End-of-life care: Findings from a national survey of informal caregivers. Arch Intern Med, 2007; 167:40–46.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
