Does it Matter Who Decides? Outcomes of Surrogate Decision-Making for Community-Dwelling, Cognitively Impaired Older Adults Near the End of Life

Baum, Micah Y.; Gallo, Joseph J.; Nolan, Marie T.; Langa, Kenneth M.; Halpern, Scott D.; Macis, Mario; Nicholas, Lauren Hersch

doi:10.1016/j.jpainsymman.2021.06.009

Cited by 5 publications

(5 citation statements)

References 36 publications

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“…Although there is potential for decisions to further vary based on the quality of relationships between decision makers and patients and even across members of decision-making teams, the HRS does not collect any data on relationship quality. Other research has found no consistent differences in EOL care for dementia patients when decisions were made by children, spouses, or children and spouses together ( 31 ).…”

Section: Discussion and Limitationsmentioning

confidence: 98%

Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life

Nicholas,

Halpern,

Weir

et al. 2023

Innovation in Aging

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Background and Objectives The clinical progression of severe dementia frequently leads to situations where surrogate decision-makers must quickly make choices about potentially burdensome treatments that offer limited clinical benefit. We examined whether the number of decision-makers and their access to advance directives were related to treatment choice for patients with severe dementia in comparison to those with normal cognition. Research Design and Methods We retrospectively linked survey responses about end-of-life treatment decisions to Medicare claims for Health and Retirement Study respondents dying between 2002 – 2015 whose next-of-kin reported a need for surrogate decision-making. We estimated multivariable logistic regression models to study measures of aggressive care in the last 6 months of life; in-hospital death, burdensome transfers, and burdensome treatments. Results Compared to patients who were cognitively normal near the end-of-life (n=1,198), patients with severe dementia (n=722) were less likely to experience burdensome treatments (18% [95% CI 14 - 21] vs 32% [95% CI 29 - 35]), burdensome transfers (20% [95% CI 17-24] vs 30% [95% CI 27-33]), and in-hospital death (24% [95% CI 20-28] vs. 30% [95% CI 26-33]) when surrogates were involved. Rates of burdensome treatments, transfers, or in-hospital death for decedents with severe dementia did not vary with single versus multiple decision-makers or when decision-makers were informed by advance directives. However, among decedents with normal cognition, a single decision-maker informed by an advance directive was associated with the lowest rates of burdensome treatments and in-hospital death. Discussion and Implications Surrogate decision-makers made similar choices around end-of-life care for patients with severe dementia regardless of the number of decision-makers and availability of advance directives. However, both advance directives and single decision-makers were associated with less aggressive care for cognitively normal decedents.

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Section: Discussion and Limitationsmentioning

confidence: 98%

Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life

Nicholas,

Halpern,

Weir

et al. 2023

Innovation in Aging

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“…Our findings that patients are more likely to receive intensive DMTs when their family caregiver served as the primary decision-maker echo prior studies. 38 One explanation for the observed differences may be caregivers’ interpretation of their familial duties during serious illness. In our study, we identified that caregivers may be under unique pressure to choose intensive DMTs in deference to “filial piety” or to opt for a conservative measure that “respect patient’s preferences.” These competing pressures highlight the complexities, psychological burdens, and evolving narratives shaping Chinese caregivers’ understanding of their familial duties when caring for a dying relative.…”

Section: Discussionmentioning

confidence: 99%

Association Between Primary Decision-Maker and Care Intensity Among Patients With Advanced Cancer in Mainland China

Yang

Leng

Wang

et al. 2023

Am J Hosp Palliat Care

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Purpose: In China, decisions regarding the treatment of seriously ill patients are usually made by family caregivers. This study aimed to explore the association between the primary decision-makers and the intensity of care given to patients with advanced cancer in China. Methods: We conducted a survey of family members and other caregivers representing 828 cancer patients who died between July 2013 and July 2016. The survey asked: “After the physician conveyed that the disease is incurable, what treatment did the patient and caregiver prefer?” and “Who was the primary decision-maker?” We compared the treatment intensity with locus of decision-making using multivariable logistic regression, adjusting for socio-demographic and clinical covariates informed. Results: Of the 792 patients in our sample, the majority were male (67·2%), 60 years or older (64·0%), married (82·2%), lived with family (98·2%), had medical insurance (94·8%), earned below-average income (53·5%), lived rurally (61·5%), had a gastrointestinal cancer diagnosis (50·8%), experienced moderate or severe pain (86·3%), never received palliative care (80·4%) and had caregivers as primary decision-makers (70·6%). We found that patients were more likely to receive intensive disease-modifying treatments when the primary decision-maker were their children (adjusted odds ratio [AOR] = 1·86, 95% CI:1·26-2·74), spouse (AOR = 2·04, 95% CI:1·26-3·30), or other caregivers (AOR = 3·46, 95% CI:1·24-9·69). Conclusions: When patients with advanced cancer in China did not make their own medical decisions, they were more likely to receive intensive disease-modifying treatments at the end-of-life. Actions should be taken to better understand and ensure that caregivers’ decisions reflect the values and presence of patients.

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“…We found that patients with dementia received less aggressive EOL care than those without dementia, and advance directives were associated with less aggressive care in some circumstances. There were no consistent differences in outcomes depending on how many family members were involved with decisionmaking and outcomes were similar when spouses, children, and mixed teams were responsible for EOL decisions (Baum et al, 2021;Nicholas et al, 2023).…”

Section: Experimental Survey Designmentioning

confidence: 94%

How Do Surrogates Make Treatment Decisions for Patients with Dementia? An Experimental Survey Study

Nicholas,

Langa,

Halpern

et al. 2024

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for their helpful comments. We are grateful to Marcella Alsan, Kathleen Mullen, and participants of the ASHEcon 2022 annual meeting and the 2023 NBER Summer Institute for insightful discussion of this research. All errors are our own. The authors have no conflicts of interest. Dr. Langa has acted as an expert witness in legal cases regarding the capacity of individuals to make decisions about their finances and health care. The views expressed herein are those of the authors and do not necessarily reflect the views of the National Bureau of Economic Research.At least one co-author has disclosed additional relationships of potential relevance for this research. Further information is available online at http://www.nber.org/papers/w32116 NBER working papers are circulated for discussion and comment purposes. They have not been peer-reviewed or been subject to the review by the NBER Board of Directors that accompanies official NBER publications.

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Does it Matter Who Decides? Outcomes of Surrogate Decision-Making for Community-Dwelling, Cognitively Impaired Older Adults Near the End of Life

Cited by 5 publications

References 36 publications

Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life

Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life

Association Between Primary Decision-Maker and Care Intensity Among Patients With Advanced Cancer in Mainland China

How Do Surrogates Make Treatment Decisions for Patients with Dementia? An Experimental Survey Study

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