Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors

Yamamoto, Sena; Arao, Harue; Masutani, Eiko; Aoki, Masami; Kishino, Megumi; Morita, Tatsuya; Shima, Yasuo; Kizawa, Yoshiyuki; Tsuneto, Satoru; Aoyama, Maho

doi:10.1016/j.jpainsymman.2016.12.348

Cited by 38 publications

(22 citation statements)

References 37 publications

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“…The impact of such challenges is consistent with studies demonstrating decisional burden of FC in cases of uncertainty about patient's wishes and conflicting needs, e.g. regarding the place of care and death [13,15]. For example, a study on FC who made a surrogate decision about the place of end-of-life care showed that FC reported significantly more burden when the decision was not concordant with the patient's wishes [15].…”

Section: Discussionsupporting

confidence: 77%

“…However, studies suggest that at least one-third of FC face emotional pressure and decisional burden associated with doubt and regret months or even years afterwards, which could lead to depression and stronger grief [8,13]. High caregiver burden has been reported specifically in case of substitute decision-making responsibilities, uncertainty about the patient's wishes and values, and conflicting wishes regarding the place of death [13][14][15]. In the context of palliative and end-of-life care, FC may encounter manifold morally distressing problems or ethical dilemmas.…”

Section: Introductionmentioning

confidence: 99%

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Ethical challenges in family caregivers of patients with advanced cancer – a qualitative study

et al. 2020

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Background: Caring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC's perspective. Methods: Within a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide. Data were analysed using grounded theory and abductive reasoning. Results: Core phenomena identified were two paths connected to ethical challenges among FC. Ethical challenges occurred in the context of difficult decision-making (Path 1) and in the context of lacking decision-making options when no decision was to be made by FC (Path 2). We found each path to be triggered by distinct sets of morally troubling situations that occurred during the patient's disease trajectory. In the course of difficult decision-making (Path 1), detrimental external factors could add emotional stress, thus making the decision-making process burdensome. FC used various proactive strategies to overcome those detrimental factors and/or to make the decision. Decisions in conflict with FCs' own moral expectations and values led to moral distress, generating painful emotions. When no decision was to be made by FC (Path 2), FC felt powerless and overrun, which was associated with major emotionality in terms of anxiety and confusion. Either detrimental factors aggravated these feelings to paralyzing shock, or internal resources enabled FC to accept the situation. While acceptance prevented moral distress, paralyzing shock often caused a sense of not meeting their their own moral expectations and values, resulting in moral distress. In both paths, factors were identified that helped FC finding closure and prevented moral residue. Nevertheless, some FC experienced residual moral distress months after the morally troubling situation had occurred. Conclusion: Findings provide first information towards understanding paths leading to ethical challenges in FC and can help clinicians to minimize associated emotional burden and moral distress.

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Section: Discussionsupporting

confidence: 77%

Section: Introductionmentioning

confidence: 99%

Ethical challenges in family caregivers of patients with advanced cancer – a qualitative study

et al. 2020

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“…However, family's paternalistic decisions may not consider the patient's values or result in reasonable decisions respecting the self-determination right of the patient (25). In addition, family members could suffer from decisional burden and experience depression and grief (26,27) due to surrogate decision making. The present study results showed that building an environment in which patients and family have open discussions and encouraging LST discussions with patients and family can be strategies to reduce family-related barriers.…”

Section: Discussionmentioning

confidence: 99%

Difficulties doctors experience during life-sustaining treatment discussion after enactment of the Life-Sustaining Treatment Decisions Act: A cross-sectional study

Yoo

Choi

Kim

et al. 2020

Preprint

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Background In the Republic of Korea, life-sustaining treatment (LST) for patients at the end of life should be legally discussed by a doctor according to the LST Decisions Act, which was enacted in February 2018. However, little is known about challenges doctors experience during LST discussion. This study aims to investigate the perceived difficulties of doctors during LST discussions after enactment of the new Act. Methods A cross-sectional survey was conducted in a tertiary hospital in August 2019 and included 686 doctors (432 attending physicians, 141 clinical fellows, and 295 residents) who care for seriously ill patients. The doctors were given a structured questionnaire, and difficulties during the discussion process were examined. Results A total of 132 doctors answered the questionnaire. Most (86.4%) experienced considerable difficulties during LST discussions (mean score, 7.4 ± 1.6/10). The two most common difficulties were communication with patients and family and determining when to discuss LST. Two-thirds of doctors found direct discussions with the patient difficult and said they would initiate LST discussions only with family. LST discussions were actually initiated later than considered appropriate. When medically assessing whether the patient is imminently dying, 56% of doctors experienced disagreements with other doctors, which could affect their decisions. Conclusion In the present study, most doctors experienced serious difficulties during LST discussions. To alleviate these difficulties, further institutional support is needed.

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Section: Introductionmentioning

confidence: 99%

“…Family members play an important role in end-of-life cancer decisionmaking (Laryionava et al, 2018;Yamamoto et al, 2017). Family members in Asian countries have often adopted the role of decisionmakers on behalf of patients due to the family-centered cultural tradition (Li, 2013;Mo et al, 2012;Yamamoto et al, 2017). Such a familial decision-making pattern in Asian countries has been observed, even for competent patients, and more frequently for those approaching death (Kim, 2015;Lee et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

Decisional conflict in end‐of‐life cancer treatment among family surrogates: A cross‐sectional survey

Jeon

Kim

Lee

2018

Nursing & Health Sciences

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The aims of this study were to examine the extent of decisional conflict in end-of-life cancer treatments and to investigate the influences and predictors of decisional conflict among family surrogates. A cross-sectional, descriptive, correlational design was applied. Data were collected from a convenience sample of 102 family members who had participated in end-of-life cancer decision-making. We enrolled participants from inpatient oncology units at a university hospital in South Korea from May 2014 to January 2016. The results indicated that many family surrogates had high levels of decisional conflict and psychological stress after end-of-life cancer decision-making. Hierarchical multiple regression analyses demonstrated that decisional conflict had significant, substantial influences on decision regret and psychological stress after controlling for demographic variables. Family surrogates who were aware of the patients' wishes about end-of-life treatments and those who had good family functioning had less decisional conflict. To relieve decisional conflict regarding end-of-life cancer treatment among family surrogates, it is necessary to encourage patients to share their end-of-life treatment wishes with family members and to consider family functioning in the end-of-life decision-making process.

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Decision Making Regarding the Place of End-of-Life Cancer Care: The Burden on Bereaved Families and Related Factors

Abstract: Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients' and family members' values that are relevant to the desired place of EOL care is important.

Cited by 38 publications

References 37 publications

Ethical challenges in family caregivers of patients with advanced cancer – a qualitative study

Ethical challenges in family caregivers of patients with advanced cancer – a qualitative study

Difficulties doctors experience during life-sustaining treatment discussion after enactment of the Life-Sustaining Treatment Decisions Act: A cross-sectional study

Decisional conflict in end‐of‐life cancer treatment among family surrogates: A cross‐sectional survey

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