Abstract
Context
Hospice aides provide essential direct care to hospice patients, yet there is minimal
research examining hospice aide visits.
Objectives
describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient,
community, and hospice characteristics associated with these visits.
Methods
Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants
who died between 2010-2018 and received routine hospice care in the 6 months prior
to death (n = 674). We characterized prevalence and frequency of hospice aide visits
over time and used generalized linear modelling to identify factors associated with
visits.
Results
64% of hospice enrollees received hospice aide visits and average visit frequency
(1.3 per week) remained stable throughout enrollment. The only patient characteristic
associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory
diagnosis vs. dementia: OR 0.372, P = 0.040). Those living in community-based residential housing and those cared for
by hospices with aides employed as staff were more likely to receive any hospice aide
visits (OR 2.331, P = 0.047 and OR 4.612, P = 0.002, respectively.)
Conclusion
Hospice aide visits are a common component of hospice care, but visit frequency does
not increase as death approaches. Receipt of hospice aide visits was primarily associated
with community and hospice agency (rather than patient) characteristics. Future work
is needed to ensure that hospice aides are integrated in the hospice interdisciplinary
team and that access to hospice aide visits is meaningfully driven by patient and
family needs, rather than the practice norms and business models of individual hospice
agencies.
Key Words
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pain and Symptom ManagementAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
Organization NHaPC. NHPCO Facts and Figures. Accessed June 7, 2021. https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2020-edition.pdf
- Supporting home hospice family caregivers: insights from different perspectives.Palliat Support Care. 2018; 16: 209-219https://doi.org/10.1017/S1478951517000219
- A national profile of end-of-life caregiving in The United States.Health Aff (Millwood). 2017; 36: 1184-1192https://doi.org/10.1377/hlthaff.2017.0134
- Family caregiving at the end of life and hospice use: a national study of medicare beneficiaries.J Am Geriatr Soc. 2020; 68: 2288-2296https://doi.org/10.1111/jgs.16648
CFR Subpart C—Conditions of Participation: Patient Care. Accessed June 7, 2021. https://www.law.cornell.edu/cfr/text/42/part-418/subpart-C
- Committee on approaching death: addressing key end-of-life issues.Dying in America : Improving quality and honoring individual preferences near the end of life. The National Academies Press, 2015: 612
- Changing focus: end-of-life care in a New York State managed long-term care program.J Appl Gerontol. 2019; 38: 1371-1390https://doi.org/10.1177/0733464817737620
- Home care workers' experiences of client death and disenfranchised grief.Qual Health Res. 2019; 29: 382-392https://doi.org/10.1177/1049732318800461
- We're the eyes and the ears, but we don't have a voice: perspectives of hospice aides.J Hosp Palliat Nurs. 2018; 20: 47-54https://doi.org/10.1097/NJH.0000000000000407
- Paid caregivers in the community-based dementia care team: do family caregivers benefit?.Clin Ther. 2021; (in press)
- Interdisciplinary team care and hospice team provider visit patterns during the last week of life.J Palliat Med. 2016; 19: 482-487https://doi.org/10.1089/jpm.2015.0198
- Does continuous hospice care help patients remain at home?.J Pain Symptom Manage. 2015; 50: 297-304https://doi.org/10.1016/j.jpainsymman.2015.04.007
- Associations between hospice care and scary family caregiver experiences.J Pain Symptom Manage. 2021; 61: 909-916https://doi.org/10.1016/j.jpainsymman.2020.08.041
- Family carers providing support to a person dying in the home setting: a narrative literature review.Palliat Med. 2015; 29: 487-495https://doi.org/10.1177/0269216314565706
- Is dying at home overrated?.The New York Times, 2019
- Communication within hospice interdisciplinary teams: a narrative review.Am J Hosp Palliat Care. 2016; 33: 996-1012https://doi.org/10.1177/1049909115613315
- Examining variation in hospice visits by professional staff in the last 2 days of life.JAMA Intern Med. 2016; 176: 364-370https://doi.org/10.1001/jamainternmed.2015.7479
- National hospice survey results: for-profit status, community engagement, and service.JAMA Intern Med. 2014; 174: 500-506https://doi.org/10.1001/jamainternmed.2014.3
- Continuous home care reduces hospice disenrollment and hospitalization after hospice enrollment.J Pain Symptom Manage. 2016; 52: 813-821https://doi.org/10.1016/j.jpainsymman.2016.05.031
- Interdisciplinary staffing patterns: do for-profit and nonprofit hospices differ?.J Palliat Med. 2010; 13: 389-394https://doi.org/10.1089/jpm.2009.0306
Medicare Current Beneficiary Survey. Accessed November 10, 2021. https://www.cms.gov/Research-Statistics-Data-and-Systems/Research/MCBS
- A longitudinal analysis of the lifetime cost of dementia.Health Serv Res. 2012; 47: 1660-1678https://doi.org/10.1111/j.1475-6773.2011.01365.x
- Trends in residential setting and hospice use at the end of life for medicare decedents.Health Aff (Millwood). 2020; 39: 1060-1064https://doi.org/10.1377/hlthaff.2019.01549
- Service availability in assisted living and other community-based residential settings at the end of life.J Palliat Med. 2021; https://doi.org/10.1089/jpm.2020.0625
Reserach NBoE. Provider Services File. Accessed August 19, 2021. https://www.nber.org/research/data/provider-services-files
- Has hospice use changed? 2000-2010 utilization patterns.Med Care. 2015; 53: 95-101https://doi.org/10.1097/MLR.0000000000000256
- Addressing power dynamics in interprofessional health care teams.Int J Healthc Manage. 2020;
- The future of the home care workforce: training and supporting aides as members of home-based care teams.J Am Geriatr Soc. 2019; 67: S444-S448https://doi.org/10.1111/jgs.15846
- Home and community-based workforce for patients with serious illness requires support to meet growing needs.Health Aff (Millwood). 2019; 38: 902-909https://doi.org/10.1377/hlthaff.2019.00021
- What I've learned over a lieftime of caring for the dying.The New York Times, 2021
- Geographic variation in hospice use in the United States in 2002.J Pain Symptom Manage. 2007; 34: 277-285https://doi.org/10.1016/j.jpainsymman.2007.03.007
- Acquisitions of hospice agencies by private equity firms and publicly traded corporations.JAMA Intern Med. 2021; 181: 1113-1114https://doi.org/10.1001/jamainternmed.2020.6262
- Hospice tax status and ownership matters for patients and families.JAMA Intern Med. 2021; 181: 1114-1115https://doi.org/10.1001/jamainternmed.2020.6300
Article info
Publication history
Published online: December 22, 2021
Accepted:
December 14,
2021
Identification
Copyright
© 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
