Palliative care can help manage health challenges of seriously ill individuals, including persons living with dementia (PLWD), but is often declined.
Objective:
Explore why seriously ill individuals and caregivers decline palliative care.
Methods:
A pilot study using semi-structured interviews with three Medicare Advantage plan members and 15 caregivers, including 13 caregivers of PLWD, who declined palliative care (PC) within the previous year and focus groups with five PC staff.
Results:
Reasons for declining included mis-association with hospice, not seeing additional benefit to current care, and reluctance to change current care. PC staff provided additional reasons: challenges engaging with the outreach team, need for family-based decision-making, and reluctance to engage with unfamiliar persons.
Conclusions:
Incremental adjustments in PC communication may facilitate uptake, including providing explanations that are distinct from hospice, tailored to care needs, focused on reducing illness burden, and introduced by the current care team.
BoersmaP, BlackLI, WardBW. Prevalence of multiple chronic conditions among US adults, 2018. Prev Chronic Dis, 2020; 17:E106; doi: 10.5888/pcd17.200130
2.
ManlyJJ, JonesRN, LangaKM, et al.Estimating the prevalence of dementia and mild cognitive impairment in the US: The 2016 health and retirement study harmonized cognitive assessment protocol project. JAMA Neurol, 2022; 79(12):1242–1249; doi: 10.1001/jamaneurol.2022.3543
3.
RyanA, WallaceE, O’HaraP, et al.Multimorbidity and functional decline in community-dwelling adults: A systematic review. Health Qual Life Outcomes, 2015; 13(1):168; doi: 10.1186/s12955-015-0355-9
NunesBP, FloresTR, MielkeGI, et al.Multimorbidity and mortality in older adults: A systematic review and meta-analysis. Arch Gerontol Geriatr, 2016; 67:130–138; doi: 10.1016/j.archger.2016.07.008
6.
MakovskiTT, SchmitzS, ZeegersMP, et al.Multimorbidity and quality of life: Systematic literature review and meta-analysis. Ageing Res Rev, 2019; 53:100903; doi: 10.1016/j.arr.2019.04.005
7.
MarengoniA, AnglemanS, MelisR, et al.Aging with multimorbidity: A systematic review of the literature. Ageing Res Rev, 2011; 10(4):430–439; doi: 10.1016/j.arr.2011.03.003
8.
KelleyAS, HansonLC, AstK, et al.The serious Illness population: Ascertainment via electronic health record or claims data. J Pain Symptom Manage, 2021; 62(3):e148–e155; doi: 10.1016/j.jpainsymman.2021.04.012
MuraliKP, YuG, MerrimanJD, et al.Latent class analysis of symptom burden among seriously Ill adults at the end of life. Nurs Res, 2021; 70(6):443–454; doi: 10.1097/NNR.0000000000000549
11.
HutchinsonAF, GracoM, RasekabaTM, et al.Relationship between health-related quality of life, comorbidities and acute health care utilisation, in adults with chronic conditions. Health Qual Life Outcomes, 2015; 13(1):69; doi: 10.1186/s12955-015-0260-2
12.
PhelanEA, BorsonS, GrothausL, et al.Association of incident dementia with hospitalizations. JAMA, 2012; 307(2):165–172; doi: 10.1001/jama.2011.1964
13.
RiffinC, Van NessPH, WolffJL, et al.Family and other unpaid caregivers and older adults with and without dementia and disability. J Am Geriatr Soc, 2017; 65(8):1821–1828; doi: 10.1111/jgs.14910
14.
KasperJD, FreedmanVA, SpillmanBC, et al.The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Aff (Millwood), 2015; 34(10):1642–1649; doi: 10.1377/hlthaff.2015.0536
15.
KamalAH, CurrowDC, RitchieCS, et al.Community-Based palliative care: The natural evolution for palliative care delivery in the U.S. J Pain Symptom Manage, 2013; 46(2):254–264; doi: 10.1016/j.jpainsymman.2012.07.018
16.
VernonE, HughesMC, KowalczykM. Measuring effectiveness in community-based palliative care programs: A systematic review. Soc Sci Med, 2022; 296:114731; doi: 10.1016/j.socscimed.2022.114731
17.
PeelerA, DoranA, Winter-DeanL, et al.Public health palliative care interventions that enable communities to support people who are dying and their carers: A scoping review of studies that assess person-centered outcomes. Front Public Health, 2023; 11:1180571; doi: 10.3389/fpubh.2023.1180571
18.
HoeDF, WangY-H, RahmanA, et al.Identifying paths forward: Expanding palliative care to low-income patients in California. Am J Hosp Palliat Care, 2023; 40(8):850–855; doi: 10.1177/10499091221131973
19.
CardenasV, RahmanA, ZhuY, et al.Reluctance to accept palliative care and recommendations for improvement: Findings from semi-structured interviews with patients and caregivers. Am J Hosp Palliat Care, 2022; 39(2):189–195; doi: 10.1177/10499091211012605
20.
KoganAC, RahmanA, LomeliS, et al.“You cannot stop talking about palliative care:” Perspectives and learnings from providers on communicating about home-based palliative care to patients and physicians. Am J Hosp Palliat Care, 2023; 40(2):122–128.
21.
ErelM, MarcusE-L, Dekeyser-GanzF. Barriers to palliative care for advanced dementia: A scoping review. Ann Palliat Med, 2017; 6(4):365–379; doi: 10.21037/apm.2017.06.13
22.
FreedM, BiniekJ, DamicoA, et al.Medicare Advantage in 2024: Enrollment Update and Key Trends. 2024.
23.
Anonymous. Nonmedical Supplemental Benefits in Medicare Advantage in 2024. ATI Advisory; 2023.
24.
BradleyEH, CurryLA, DeversKJ. Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Serv Res, 2007; 42(4):1758–1772; doi: 10.1111/j.1475-6773.2006.00684.x
25.
McHughML. Interrater reliability: The kappa statistic. Biochem Med (Zagreb), 2012; 22(3):276–282.
26.
EnguidanosS, LomeliS, KoganAC, et al.Home-Based palliative care team perspectives on challenges in patient referral and enrollment. J Pain Symptom Manage, 2022; 63(5):665–672; doi: 10.1016/j.jpainsymman.2022.01.011
27.
BaikD, ChoH, Masterson CreberRM. Examining interventions designed to support shared decision making and subsequent patient outcomes in palliative care: A systematic review of the literature. Am J Hosp Palliat Care, 2019; 36(1):76–88; doi: 10.1177/1049909118783688
