Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

Lowers, Jane; Scardaville, Melissa C.; Hughes, Sean; Preston, Nancy

doi:10.1186/s12904-020-00660-8

Cited by 13 publications

(30 citation statements)

References 66 publications

(273 reference statements)

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“…Despite these challenges, the expectation of impending death and shortened duration of caregiving in the context of hastened death may result in less caregiver burden. [20] One study found no significant difference in depression, grief, or mental health service use between caregivers whose loved ones requested assisted dying and those whose loved ones did not. However, those whose loved ones received a lethal prescription were more likely to believe that their loved one's choices were honored and less likely to have regrets about how their loved one died.…”

Section: Discussionmentioning

confidence: 99%

A Race to the End: Family Caregivers’ Experience of Medical Assistance in Dying (MAiD)—a Qualitative Study

et al. 2021

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BACKGROUND:The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention. OBJECTIVE: The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14. DESIGN: Caregiver experience was examined based on qualitative, semi-structured interviews. PARTICIPANTS: A total of 22 caregivers of patients who had requested MAiD were interviewed. APPROACH: Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology. KEY RESULTS: The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles. CONCLUSIONS: The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.

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Section: Discussionmentioning

confidence: 99%

A Race to the End: Family Caregivers’ Experience of Medical Assistance in Dying (MAiD)—a Qualitative Study

et al. 2021

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“…Moreover, inadequate knowledge and information also affected family caregivers’ perception of being in control and their ability to make advanced care plans, as findings revealed feelings of uncertainty as well as ambivalence among caregivers following the making of EOL decisions. End-of-life caregiving requires new knowledge and mindset because the duration of end-of-life caregiving facilities learn new skills or gain confidence in abilities and certainty in decision making [ 17 ]. Previous studies have revealed that making decisions to accept or reject life-sustaining treatments for family members are seen as difficult and stressful [ 18 , 19 , 20 , 21 ], as “non-resuscitation” is often perceived as “giving up” [ 22 , 23 , 24 ].…”

Section: Discussionmentioning

confidence: 99%

Caregivers’ Experience of End-of-Life Stage Elderly Patients: Longitudinal Qualitative Interview

Wong

Lau

Chau

et al. 2022

IJERPH

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Objectives: This study seeks to provide an understanding of the changing experiences in caregivers of end-of-life patients in Hong Kong through exploring their caregiving journey. Methods: Using longitudinal individual qualitative interviews, a total of 14 caregivers of community-dwelling elderly patients receiving end-of-life care were recruited between 2015 and 2016. A series of in-depth interviews and observations were conducted in 14 cases during the end-of-life journey. Results: A thematic analysis revealed four sequential experiential stages, abbreviated as “CAPE” that caregivers confronted: Stage 1 Certainty, (1a) lack of certainty regarding the progression of decline at the end-stage of life (1b) feelings of despair as patients’ function decreased; Stage 2 Ambivalence, (2a) feelings of ambivalence after decisions were made regarding EOL care, (2b) struggle over care responsibility within families; Stage 3 Perturbed, (3a) varied in quality of EOL care, (3b) depressed mood arisen from frequent exposure to the suffering of elderly patients; and Stage 4 Expectation, (4a) losing the caregiving role as patients showing signs of imminent death. Conclusions: These findings increase our understanding of caregivers’ in-depth experience over time that arise within the structural context of end-of-life care. Our data highlights the need for end of life related knowledge and information, provision of a caring atmosphere and communication, and professional-led detachment in creating caregiving-friendly service in healthcare system, thus as to provide support and alleviate stress for caregivers with their critical responsibility and role during the course of end-of-life care.

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“…31 Even in early stages of precontemplation, family/friends can already start shouldering a heavy burden. 7 43 Schutt 31 explored the framing of MAiD under either a biomedical or palliative lens. Biomedical decisionmaking focuses on the individual and the treatment.…”

Section: Values and Decision-makingmentioning

confidence: 99%

“…The focus of MAiD is often on the patient, although family/friends are the ones who bereave, whether they were supporters or not of MAiD. Previous research suggests improved bereavement with MAiD due to the opportunity for closeness, saying goodbye, or copreparing for end of life (EOL) 5–7. Nonetheless, with a limited number of jurisdictions permitting MAiD, factors such as social isolation, stigma or religious acceptance can impact the expression of grief and bereavement 8 9.…”

Section: Introductionmentioning

confidence: 99%

“…The psychosocial aftereffects of MAiD has been studied in previous reviews. Reviews focusing on caregiver or family experiences around assisted dying or hastened death recommend professional support for families during the MAiD process 7 10. Given the many challenges around MAiD, grief and bereavement are the focus of only a handful of studies.…”

Section: Introductionmentioning

confidence: 99%

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Grief and bereavement of family and friends around medical assistance in dying: scoping review

Yan

Bytautas

Isenberg

et al. 2022

BMJ Support Palliat Care

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ObjectivesThe increase in the number of jurisdictions legalising medical assistance in dying (MAiD) has contributed to a growth in the number of family and friends who may face unique elements of grief and bereavement. The aim of this study was to review the literature of grief and bereavement of family and friends following MAiD, and to summarise findings for the development of community resources and programming.MethodsWe performed a scoping review with workshop consultation of stakeholders. Six electronic databases and the grey literature were searched for qualitative, quantitative and review articles. Content-analytical techniques and multidisciplinary discussions led to the development of concepts and a conceptual framework.ResultsTwenty-eight articles met the inclusion criteria. We identified five concepts that impact the grief and bereavement of family/friends: relationships between family/friends and the patient as well as healthcare providers; aspects of MAiD grief which can include secrecy and/or anticipatory grief; preparations which may include family/friends and should be centralised and harmonised; end of life as an opportunity for ceremony; and the aftereffects during which mental health outcomes are studied.ConclusionThis multidisciplinary scoping review incorporates stakeholder consultation to find that support is needed to address the complicated and changing emotions of family/friends before, during and after a MAiD death. Furthermore, additional societal normalisation of MAiD is necessary to reduce secrecy and stigma and improve the accessibility of resources for family/friends.

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Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review

Cited by 13 publications

References 66 publications

A Race to the End: Family Caregivers’ Experience of Medical Assistance in Dying (MAiD)—a Qualitative Study

A Race to the End: Family Caregivers’ Experience of Medical Assistance in Dying (MAiD)—a Qualitative Study

Caregivers’ Experience of End-of-Life Stage Elderly Patients: Longitudinal Qualitative Interview

Grief and bereavement of family and friends around medical assistance in dying: scoping review

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