What Is the End of Life Period? Trajectories and Characterization Based on Primary Caregiver Reports

Cohen‐Mansfield, Jiska; Cohen, Rinat; Skornick-Bouchbinder, Michal; Brill, Shai

doi:10.1093/gerona/glx195

Cited by 21 publications

(12 citation statements)

References 25 publications

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“…Cancer is the leading cause of mortality in Thailand (‘CDC global health-Thailand’, n.d.), but the course of the disease is often predictable. Patients with cancer experience various physical and psychological problems throughout the dying process (Miyashita et al., 2007) including becoming more dependent on others and being unable to make decisions during their terminal phase (Cohen-Mansfield et al., 2018). Cancer care tends to be both rigorous and geographically variable, depending primarily on local practice patterns rather than patients' preferences (Narang et al., 2015).…”

Section: Introductionmentioning

confidence: 99%

Perception of a “good death” in Thai patients with cancer and their relatives

Chindaprasirt

Wongtirawit

Limpawattana

et al. 2019

Heliyon

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Background Understanding the perceptions regarding what constitutes a "good death" among cancer patients and their families could help healthcare teams to ensure proper palliative and supportive care. Objectives To demonstrate and compare the wishes cancer patients and the perceptions of their relatives regarding end-of-life care, and to identify factors associated with patients' preferences regarding place of death. Methods A sample of cancer patients and their relatives who attended the Srinagarind Hospital (Thailand) oncology clinic or day chemotherapy from September 2017 to August 2018 were enrolled. Questionnaires were given to the participants, in which the patients were asked to respond based on their own end-of-life preferences, and relatives were asked to imagine how the patients would respond to the questions. Results One hundred eighty pairs of patients and relatives were recruited. Respondents in both groups placed importance on place of death, relationship with family, physical and psychological comfort, and relationship with the medical staff. Both groups generally agreed with the statements on the questionnaire (10/13 statements). Relatives underestimated the preferences of the patients in 3 areas: “not being a burden to others,” “preparation for death,” and “physical and psychological comfort.” Being married (adjusted odds ratio (AOD) 6.4, 95%confidence interval (CI) 1.1,36.5), having had more than 6 years of education (AOD 6.5, 95%CI 1.8,23.7), having lung cancer compared to colon cancer (AOD 12, 95%CI 1.2,118.7), duration after cancer diagnosis (AOD 0.9, 95%CI 0.93,0.99), previous hospital admission (AOD 5.7, 95%CI 1.5,21.2), and life satisfaction (AOD 17.6, 95%CI 2.9,104.9) were factors associated with preference for home death. Conclusion Thai cancer patients and their relatives indicated similar preferences with regard to what constitutes a good death and patients' wishes for their end-of-life period. However, the patients' relatives underestimated the importance patients placed on statements in three domains. Factors that influenced a preference for a home death were identified.

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Section: Introductionmentioning

confidence: 99%

Perception of a “good death” in Thai patients with cancer and their relatives

Chindaprasirt

Wongtirawit

Limpawattana

et al. 2019

Heliyon

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“…As individuals approach EOL, palliative care can help them and their families understand choices for medical treatment with an increased emphasis on comfort care. Other factors that may indicate a transition to EOL care include changes in existing conditions (such as cognitive state) (Cohen-Mansfield et al, 2018), shifting caregiving focus from physical care to emotional and spiritual care (Cagle & Kovacs, 2009), admission to services that provide high-needs care, and old age with chronic illness and multiple comorbidities (Holland & Prost, 2019). The process through which families navigate the transition from curative care to EOL care or self-identify their care receiving family member as approaching EOL is poorly understood (Sercu et al, 2018) and is an important context with which to examine family caregiving experiences.…”

Section: Transition To Eol Carementioning

confidence: 99%

“…EOL care is emerging as a distinct phase and transition for family caregivers and their care receivers (Cohen-Mansfield et al, 2018). There is no exact definition of the stage at which an individual is at the EOL or what constitutes EOL caregiving (Given & Reinhard, 2017), yet there exist various definitions of EOL that apply in different circumstances.…”

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confidence: 99%

Family dynamics and the transition to end‐of‐life caregiving: A brief review and conceptual framework

Fox

Sharp

Fruhauf

2021

J of Family Theo & Revie

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Family members are an integral part of providing care and comfort at the end-of-life (EOL). Yet, individuals providing EOL care for a family member are vulnerable to emotional and psychological stress, and often indicate they do not have the knowledge or skills needed for providing this type of care. In addition, family dynamics across the life course may influence family communication and support during the transition to EOL care. Despite these findings, few studies examine family caregiving in the context of the family system during this transition. This study presents a brief review of extant literature and a conceptual framework designed to foster research in family caregiving systems, specifically how family dynamics influence preparedness for the transition to EOL caregiving. The complexity of individual and family aging experiences should be recognized in future research to advance the study of family caregiving and promote family caregivers' health and well-being.

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“…We first determined the prevalence of treatment burden over the last three years of life among older adults in the United States. While the endof-life period has been defined as ranging from weeks to years before death, 25,26 we included the last three years of life in our analysis to gain a more comprehensive picture of how the prevalence of treatment burden might change over time.…”

Section: Introductionmentioning

confidence: 99%

Prevalence of Treatment Burden in the Last Three Years of Life

Siddiqui

Ornstein

Ankuda

2021

Journal of Palliative Medicine

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Background: Little is known about the experience of treatment burden, or the difficulties that arise when the treatment workload overwhelms one's ability to take on treatment activities, at the end of life. Objective: We first assessed rates of treatment burden experienced by all older adults in the last three years of life. Among the subset of our sample who had multiple chronic conditions (MCCs), we determined correlates of treatment burden with sociodemographic, health, and caregiving factors. Design: We conducted a cross-sectional study using nationally representative data from the National Health and Aging Trends Study (NHATS). Setting/Subjects: Our sample included 356 adults, aged 65 years and older, who died within three years of completing the 2012 NHATS Treatment Burden Questionnaire. Our MCC cohort included only those in our sample with two or more chronic conditions. Measurements: Our measure of treatment burden included reports of difficulty in managing treatment activities, delays in treatments, or feeling that physicians asked for too much. We built a composite measure to identify burden if participants reported that at least one item occurred sometimes or often. Results: Forty-three percent of older adults in their last three years of life experienced treatment burden. Among individuals with MCCs, bivariate analysis found that treatment burden was associated with being a racial minority and having depression, anxiety, and a cancer diagnosis. These associations were not statistically significant in a multivariable model. Conclusion: Treatment burden is a common experience among older adults regardless of sociodemographic, clinical, and caregiving factors.

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What Is the End of Life Period? Trajectories and Characterization Based on Primary Caregiver Reports

Abstract: Results help characterize EOL trajectories and should inform care planning and decision making at various levels. In addition, they suggest a methodology for better understanding EOL.

Cited by 21 publications

References 25 publications

Perception of a “good death” in Thai patients with cancer and their relatives

Perception of a “good death” in Thai patients with cancer and their relatives

Family dynamics and the transition to end‐of‐life caregiving: A brief review and conceptual framework

Prevalence of Treatment Burden in the Last Three Years of Life

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