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Cited by 92Palliative Care and End-of-Life IssuesDementia and Cognitive Impairment ResearchPalliative and Oncologic Care

Triggered palliative care for late-stage dementia: A pilot randomized trial

Open access
Hanson, Laura C., Kistler, Christine E., Lavin, Kyle, Gabriel, Stacey L., Ernecoff, Natalie C., Lin, Feng-Chang, Sachs, Greg A., Mitchell, Susan L.·2019·Journal of Pain and Symptom Management
DOI 10.1016/j.jpainsymman.2018.10.494PMC PMC6310628
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Abstract

Context Persons with late-stage dementia have limited access to palliative care.Objective The objective of this study was to test dementia-specific specialty palliative care triggered by hospitalization.Methods This pilot randomized controlled trial enrolled 62 dyads of persons with late-stage dementia and family decision-makers on admission to hospital. Intervention dyads received dementia-specific specialty palliative care consultation plus postacute transitional care. Control dyads received usual care and educational information. The primary outcome was 60-day hospital or emergency department visits. Secondary patient- and family-centered outcomes were patient comfort, family distress, palliative care domains addressed in the treatment plan, and access to hospice or community-based palliative care. Secondary decision-making outcomes were discussion of prognosis, goals of care, completion of Medical Orders for Scope of Treatment (MOST), and treatment decisions.Results Of 137 eligible dyads, 62 (45%) were enrolled. The intervention proved feasible, with protocol completion ranging from 77% (family two-week call) to 93% (initial consultation). Hospital and emergency department visits did not differ (intervention vs. control, 0.68 vs. 0.53 transfers per 60 days, P = 0.415). Intervention patients had more palliative care domains addressed and were more likely to receive hospice (25% vs. 3%, P < 0.019). Intervention families were more likely to discuss prognosis (90% vs. 3%, P < 0.001) and goals of care (90% vs. 25%, P < 0.001) and to have a MOST at 60-day follow-up (79% vs. 30%, P < 0.001). More intervention families made decisions to avoid rehospitalization (13% vs. 0%, P = 0.033).Conclusion Specialty palliative care consultation for hospitalized patients with late-stage dementia is feasible and promising to improve decision-making and some treatment outcomes.

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Crossref · 10.1016/j.jpainsymman.2018.10.494

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  • When transitions were facilitated in ways that respected cultural values and helped families navigate stigma, caregivers experienced more acceptance and less distress.

    “Studies found that when transitions were facilitated in ways that respected cultural values and helped families navigate stigma, caregivers experienced more acceptance and less distress (Aaltonen et al., 2014; Hanson et al., 2019; Hanssen et al., 2022).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Hanson et al., 2019

    The Methods (Intervention and control conditions; page unavailable) say the consultation addressed cultural concerns, but do not describe helping families navigate stigma. The Results (Patient and family-centered outcomes; page unavailable) report that caregivers’ distress did not differ between groups at 60 days, contrary to the claimed reduction; they do not report increased acceptance. (LLM, conf=0.87)

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  • Caregivers reported difficulties navigating decentralized systems, often encountering conflicting information or disjointed care when transitioning between hospital, home, or long-term care settings.

    “Caregivers reported difficulties navigating decentralized systems, often encountering conflicting information or disjointed care when transitioning between hospital, home, or long-term care settings (Groenvynck et al., 2022; Hanson et al., 2019; Smith et al., 2021).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Hanson et al., 2019

    The Discussion (page not supplied) describes frequent moves between hospitals and nursing facilities and reports that stakeholders interviewed before the trial associated those transitions with losing a trusted primary clinician. It does not identify those stakeholders as caregivers or report conflicting information or difficulty navigating decentralized systems. (LLM, conf=0.86)

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  • Advance Care Planning (ACP) tools, including Medical Orders for Scope of Treatment and Do Not Attempt Resuscitation (DNAR) forms, helped clarify preferences and reduce uncertainty around treatment and transition decisions.

    “Advance Care Planning (ACP) tools, including Medical Orders for Scope of Treatment and Do Not Attempt Resuscitation (DNAR) forms, helped clarify preferences and reduce uncertainty around treatment and transition decisions (Hanson et al., 2019; Kupeli et al., 2019).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Hanson et al., 2019

    The Methods (Intervention and control conditions; page not provided) describe assistance with MOST forms, and the Results (Decision-making outcomes; page not provided) report more goals-of-care discussions, MOST completion, and decisions about future treatments in the intervention arm. The paper does not establish that MOST or Do-Not-Resuscitate forms themselves reduced uncertainty around treatment or transition decisions; Do-Not-Resuscitate orders were common in both arms. (LLM, conf=0.86)

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  • Early and structured palliative care consultations played a critical role in aligning care with family goals, such as enabling people with dementia to remain at home until death.

    “Early and structured palliative care consultations played a critical role in aligning care with family goals, such as enabling people with dementia to remain at home until death (Chu et al., 2020; Hanson et al., 2019).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Hanson et al., 2019

    The Methods (Intervention and control conditions; page unavailable) describe a protocolized consultation that addressed goals-of-care decisions. The Results (Patient and family-centered outcomes; page unavailable) report more discharges to home or assisted living, but the Discussion calls a link between those discharges and goals-of-care discussions only possible. The paper does not establish that the consultations enabled people to remain at home until death; few participants died during the 60-day follow-up. (LLM, conf=0.88)

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Research works printed but not linked: 3

  1. [32]Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative dementia. The American journal of psychiatry. 1982 Sep. 7114305
  2. [47]Hanson LC, Zimmerman S, Song MK, Rosemond C, Gilliam R, Carey T, Chisholm L, Lin FC, Mitchell S. Effect of the Goals of Care intervention for advanced dementia: a randomized clinical trial. JAMA Intern Med, 2017; 177: 24– 31. 27893884 PMC5234328
  3. [51]Callahan CM, Arling G, Tu W, Rosenman MB, Counsell SR, Stump TE, Hendrie HC. Transitions in care for older adults with and without dementia. J Am Geriatr Soc 2012; 60: 813– 820. 22587849 PMC3354737

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Authors
Hanson, L. C., Kistler, C. E., Lavin, K., Gabriel, S. L., Ernecoff, N. C., Lin, F.-C., Sachs, G. A., & Mitchell, S. L.
Affiliations
  • University of North Carolina at Chapel Hill (US)
  • Regenstrief Institute (US)
  • Beth Israel Deaconess Medical Center (US)
Corresponding author
Hanson, Laura C.
ORCID
Venue
Journal of Pain and Symptom Management
Publisher
Elsevier BV
Published
2019-01
Volume
57
Issue
1
Pages
10-19
ISSN
0885-3924 (ISSN-L)
DOI
10.1016/j.jpainsymman.2018.10.494
PMC
PMC6310628
OpenAlex
W2897134714
Cited by
92
References
45
Citations by year
2026: 10 · 2025: 16 · 2024: 9 · 2023: 23 · 2022: 10 · 2021: 9 · 2020: 9 · 2019: 6
FWCI
5.72
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Pain and Symptom Management (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
  • IUScholarWorks (Indiana University) (submittedVersion)
  • Author eBooks
Funders
  • National Palliative Care Research Center
  • National Institute on Aging (R21AG052140)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Keywords
late-stage dementia, palliative care, hospitalization, palliative care consultation, family decision-making, goals of care, prognosis discussions, hospice access, emergency department visits, hospital readmission, patient comfort, family distress
MeSH terms
Acute Disease, Aged, 80 and over, Decision Making, Dementia, Family, Feasibility Studies, Female, Follow-Up Studies, Hospitalization, Humans, Male, Palliative Care, Pilot Projects, Quality of Health Care, Treatment Outcome, Patient-Centered Care, Health Communication

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