The effect of a comprehensive dementia care management program on end-of-life care
Open accessAbstract
BACKGROUND/OBJECTIVES: Although Alzheimer disease and other dementias are life limiting, only a minority of these patients or their proxy decision makers participate in advance care planning. We describe end‐of‐life care preferences and acute care and hospice use in the last 6 months of life for persons enrolled in a comprehensive dementia care management program. DESIGN: Observational, retrospective cohort. SETTING: Urban, academic medical center. PARTICIPANTS: A total of 322 persons enrolled in dementia care management after July 1, 2012, who died before July 1, 2016. INTERVENTION: Dementia care comanagement model using nurse practitioners partnered with primary care providers and community organizations to provide comprehensive dementia care, including advance care planning. MEASUREMENTS: Advance care preferences, use of Physician Orders for Life Sustaining Treatment (POLST), hospice enrollment, and hospitalizations and emergency department (ED) visits in the last 6 months of life obtained from electronic health record data. RESULTS: Nearly all decedents (99.7%, N = 321) had a goals‐of‐care conversation documented (median = 3 conversations; interquartile range = 2‐4 conversations), and 64% had advance care preferences recorded. Among those with recorded preferences, 88% indicated do not resuscitate, 48% limited medical interventions, and 35% chose comfort‐focused care. Most patients (89%) specified limited artificial nutrition, including withholding feeding tubes. Over half (54%) had no hospitalizations or ED visits in the last 6 months of life, and intensive care unit stays were rare (5% of decedents). Overall, 69% died on hospice. Decedents who had completed a POLST were more likely to die in hospice care (74% vs 62%; P = .03) and die at home (70% vs 59%; P = .04). CONCLUSIONS: Enrollees in a comprehensive dementia care comanagement program had high engagement in advance care planning, high rates of hospice use, and low acute care utilization near the end of life. Wider implementation of such programs may improve end‐of‐life care for persons with dementia. J Am Geriatr Soc 67:443–448, 2019.
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Structured, complex, multifaceted interventions in the context of advance care planning and shared decision making may effectively prevent disproportionate/unwanted end-of-life care and accordingly reduce use of healthcare resources.
“Structured, complex, multifaceted interventions in the context of advance care planning and shared decision making may effectively prevent disproportionate/unwanted end-of-life care and accordingly reduce use of healthcare resources. 4,7,44,72,355,398”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Discussion (page not available in our copy) reports high engagement in advance care planning and low acute-care use among program enrollees, and suggests the program may help prevent readmissions or recurrent emergency visits. It does not establish that the intervention prevented unwanted care or reduced resource use: the authors explicitly describe the study as noncausal and limited to one dementia-care program. (LLM, conf=0.86)
Experimental — accuracy not yet measuredThe use of structured communication tools may help improve communication with families, as suggested by two systematic reviews.
“The use of structured communication tools may help to improve communication with families, as suggested by two systematic reviews. 37,44”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Introduction and Discussion say that tools have been developed to promote shared end-of-life decision-making, including for people with dementia and their family caregivers. The References identify two systematic reviews on such tools. Jennings et al. is itself a descriptive study, however, and does not report that structured tools improved communication with families. (LLM, conf=0.87)
Experimental — accuracy not yet measuredTwo RCTs and four observational studies included in another systematic review did not report any significant association between communication tools for end-of-life decision making and DNACPR status.
“In contrast, two RCTs and four observational studies included in another systematic review did not report any significant association between communication tools for end-of-life decision making and DNACPR status. 44”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Results report DNR preferences among participants in a dementia care program, not findings from two RCTs and four observational studies. The Introduction and References mention a systematic review of communication tools, but our copy does not report whether those tools were significantly associated with DNACPR status. Searches for the study counts and association found no such passage; page numbers were unavailable. (LLM, conf=0.78)
Experimental — accuracy not yet measuredEvidence from five systematic reviews suggests that advance care planning may improve patient/family satisfaction with care.
“Evidence from five systematic reviews suggests that advance care planning may improve patient/family satisfaction with care. 9,31,37,38,44”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Discussion describes this paper as a descriptive study of one dementia care program, not a systematic review. Its Results report advance care planning and end-of-life care measures, but no patient or family satisfaction outcome. Searches for satisfaction and systematic reviews found no passage supporting the attributed finding. (LLM, conf=0.76)
Experimental — accuracy not yet measuredAlthough a meta-analysis of three observational studies suggested that communication tools are associated with reduced ICU length of stay of non-survivors, this was not confirmed in one RCT.
“In addition, although a meta-analysis of three observational studies suggested that communication tools are associated with reduced ICU length of stay of non-survivors, this was not confirmed in one RCT. 44”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Methods and Results describe ICU stays among decedents in a dementia care program, not ICU length of stay in a meta-analysis or RCT. The Discussion mentions communication tools but does not report the claimed comparison (searched: three observational studies, non-survivors, ICU length of stay, RCT). (LLM, conf=0.75)
Experimental — accuracy not yet measured
One RCT reported a reduction in the duration of mechanical ventilation with the use of communication tools.
“One RCT reported a reduction in the duration of mechanical ventilation with the use of communication tools, but another two RCTs and two observational studies failed to confirm such benefit. 44”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Methods section lists hospital length of stay and ICU stays among the outcomes assessed, but not duration of mechanical ventilation. The Discussion mentions shared decision-making tools without reporting a ventilation result from an RCT. Searches for mechanical ventilation, ventilation duration, and communication-tool trials found no passage addressing the claim. (LLM, conf=0.75)
Experimental — accuracy not yet measuredAnother two RCTs and two observational studies failed to confirm a reduction in the duration of mechanical ventilation with the use of communication tools.
“One RCT reported a reduction in the duration of mechanical ventilation with the use of communication tools, but another two RCTs and two observational studies failed to confirm such benefit. 44”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Methods (page unavailable) list advance care preferences, hospital stays, and ICU stays as measures, but not duration of mechanical ventilation. The Results (page unavailable) report end-of-life care among dementia-program decedents, not findings from two RCTs and two observational studies of communication tools. Searches for mechanical ventilation and communication-tool studies found no passage addressing the claimed result. (LLM, conf=0.78)
Experimental — accuracy not yet measuredThe certainty of existing evidence has been judged most frequently as low to very low by authors of systematic reviews.
“Accordingly, the certainty of existing evidence has been judged most frequently as low to very low by authors of systematic reviews. 7 10,28,38,39,43,44,72”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [44]
The Results and Discussion report end-of-life care outcomes for one dementia care management program, not systematic reviewers’ assessments of evidence certainty. A search of our copy for low or very low certainty, GRADE, and systematic reviews found no passage stating how frequently reviewers made those judgments. (LLM, conf=0.76)
Experimental — accuracy not yet measured
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- Authors
- Jennings, L. A., Turner, M., Keebler, C., Burton, C. H., Romero, T., Wenger, N. S., & Reuben, D. B.
- Affiliations
- University of Oklahoma Health Sciences Center (US)
- University of California, Los Angeles (US)
- Kaiser Permanente (US)
- Corresponding author
- Reuben, David B.
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2019-01-24
- Volume
- 67
- Issue
- 3
- Pages
- 443-448
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- PMC
- PMC9859712
- OpenAlex
- W2914371054
- Cited by
- 59
- References
- 28
- Citations by year
- 2026: 5 · 2025: 7 · 2024: 4 · 2023: 9 · 2022: 11 · 2021: 13 · 2020: 7 · 2019: 3
- FWCI
- 7.83
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Funders
- Alzheimer's Association (New Investigator Research Grant 15‐364406)
- Centers for Medicare and Medicaid Services (HHSM 500‐2011‐00002I Task Order HHSM‐500‐T0009)
- National Center for Advancing Translational Sciences (UCLA CTSI UL1TR000124)
- National Institute on Aging (Medical Student Training in Aging Research T35AG02)
- 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 › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- dementia care management, end-of-life care, advance care planning, hospice use, POLST, goals of care discussions, do-not-resuscitate orders, emergency department visits, nurse practitioners, Alzheimer's disease
- MeSH terms
- Aged, Aged, 80 and over, California, Decision Making, Dementia, Female, Humans, Male, Patient Care Planning, Retrospective Studies, Terminal Care, Hospice Care, Advance Care Planning, Electronic Health Records, Quality Improvement
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