Dataset Information

The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer.

ABSTRACT: CONTEXT:Advance care planning (ACP) is used to prepare patients and caregivers for future "in the moment" decisions at the end-of-life. Patients with cancer generally do not engage in all 3 components of ACP (documented living will, health-care surrogate, end-of-life discussions); however, little is known about the impact of these varying levels of ACP engagement on caregivers postdeath. OBJECTIVE:To examine the relationship between varying levels of ACP engagement and caregivers' perceptions of cancer decedents' end-of-life experiences. METHODS:A secondary analysis of the 2002 to 2014 waves of the Health and Retirement Study data using structural equation modeling was conducted. Five levels of ACP engagement were defined: full (discussions/documents), augmented discussions, documents only, discussions only, and no engagement. RESULTS:Among the 2172 cancer death cases, the analyzed sample included 983 cases where end-of-life decisions occurred. Compared to no ACP, all levels of ACP were significantly associated with caregivers' positive perceptions of cancer decedents' end-of-life experiences (P ? .001), controlling for sex, race, and Hispanic ethnicity (R ² = .21). However, the relative impact of each level of ACP engagement was not equal; full engagement (? = .61) was associated with a greater impact compared to each of the partial levels of engagement (augmented discussions [? = .33], documents only [? = .17], discussions only [? = .17]). CONCLUSION:Partial ACP engagement, not just nonengagement, serves as an important clinically modifiable target to improve the end-of-life care experience among patients with cancer and the perceptions of those experiences among bereaved caregivers.

SUBMITTER: Levoy K

PROVIDER: S-EPMC7484284 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer.

Levoy Kristin K Buck Harleah H Behar-Zusman Victoria V

The American journal of hospice & palliative care 20200413 12

<h4>Context</h4>Advance care planning (ACP) is used to prepare patients and caregivers for future "in the moment" decisions at the end-of-life. Patients with cancer generally do not engage in all 3 components of ACP (documented living will, health-care surrogate, end-of-life discussions); however, little is known about the impact of these varying levels of ACP engagement on caregivers postdeath.<h4>Objective</h4>To examine the relationship between varying levels of ACP engagement and caregivers' ...[more]

PMID: 32281390

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Project description:BackgroundThe Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme.MethodWe conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach.ResultsParticipants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs.ConclusionThe directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death.

Project description:Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.

Dataset Information

The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer.

Publications

The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer.

Similar Datasets

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