De-tabooing dying control - a grounded theory study

Thulesius, Hans; Scott, Helen; Helgesson, Gert; Lynøe, Niels

doi:10.1186/1472-684x-12-13

Cited by 14 publications

(6 citation statements)

References 41 publications

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“…Our findings confirm the need to continue to break the taboo surrounding death and dying (Thulesius et al, 2013), particularly in majority-Catholic countries such as Italy, where the model of maintaining FCs' hope often results in missed or delayed communication (Toscani & Farsides, 2006). Breaking this taboo and providing transparent, timely, thorough communication could help FCs better accept the transition from curative-oriented to palliative-oriented care (Gonella, Basso, et al, 2022).…”

Section: Spatialitysupporting

confidence: 70%

Lived experiences of end‐of‐life communication among nursing home staff: An interpretive phenomenological study

Gonella

Conti²,

Albanesi³

et al. 2022

Journal of Advanced Nursing

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Aims:To explore and understand lived experiences of end-of-life communication among nursing home staff.Design: Interpretive phenomenological study. Methods:In-person, semi-structured, in-depth interviews were conducted from May to August 2021 with 21 nursing home staff members involved in end-of-life communication (four managers, four chief nurses, three chief medical officers, three nurses, three psychologists, two occupational therapists, one chief nurse aide and one nurse aide). Data were analysed by van Manen's hermeneutic approach, which uses the lifeworld existentials of spatiality, corporeality, temporality and relationality to guide reflection on the human experience. Data were reported according to the Consolidated Criteria for Reporting Qualitative Research.Results: Thirteen categories were identified and framed within the four existentials.Regarding spatiality, end-of-life communication took place in a physical, mental, socio-cultural and professional competence space. With regard to corporeality, interviewees reported difficulties in managing their own feelings and those of family caregivers. For temporality, interviewees reported delays in end-of-life communication due to staffing issues and an increase in urgent and temporary relief admissions to nursing homes. To compensate, they tried to assure that all interactions that did take place were of high quality. Finally, with regard to relationality, interviewees lived end-of-life communication through their relationships with family caregivers and colleagues. The supportive role of colleagues was expressed as teamwork, which helped promote reflexivity about how to tailor communication, manage challenging emotions and situations, set aside time for communication, and prepare family caregivers for death. Conclusion:End-of-life communication was an all-encompassing experience for nursing home staff. The supportive role of colleagues was stressed across all existentials, suggesting that teamwork is essential in delivering effective communication at the end-of-life.

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Section: Spatialitysupporting

confidence: 70%

Lived experiences of end‐of‐life communication among nursing home staff: An interpretive phenomenological study

Gonella

Conti²,

Albanesi³

et al. 2022

Journal of Advanced Nursing

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“…A diagnosis of dementia should trigger recognition that the patient's condition is terminal. However, a discussion of death is perceived as a "taboo" [50]. Such was the case in this study.…”

Section: Discussionmentioning

confidence: 81%

Acute Care Decision-Making for Patients with Advanced Dementia: An Exploratory Study Using Cognitive Task Analysis

Erel¹,

Marcus²,

Ganz³

2021

OBM Geriatrics

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Decision-making by medical and health care staff forms the core of professional practice. Thought processes, including non-clinical considerations, significantly impact how clinical decisions are made. Such considerations become more relevant when addressing end-of-life care decisions for patients with advanced dementia (PAD). Though palliative care is recommended for this population, its implementation tends to vary. Given the medical staff’s significant influence in guiding clinical decisions, we examined thought processes that accompany staff decisions. We used Cognitive Task Analysis (CTA) to analyze interviews conducted with 15 physicians and 11 nurses working in acute care wards in Central Israel. Participants were interviewed regarding their clinical decision-making in a hypothetical scenario of a PAD who presents with an acute, potentially life-threatening medical problem. Moral judgment orientation was the primary factor affecting clinical decision-making for advanced dementia, with a pronounced dichotomous split between deontological and utilitarian approaches. This polarization was highly associated with the medical specialty. Practitioners in surgical wards tended to focus on the patient’s current medical condition, as an isolated or disease-centered illness perspective, supported by deontological moral lines of thinking. This perspective was contrary to that of staff in medical wards who mostly treated the patient from a holistic perspective with a patient-focus approach, supported by utilitarian moral lines of thinking. Although all respondents presented the patient or family as primary decision partners, the practitioners were motivated to make decisions based on unit hierarchies or positions of authority figures. Therefore, clinical end-of-life decisions are influenced by different thinking processes of the health staff and several non-clinical factors. The moral thinking paradigm was found to be associated with a professional orientation. Understanding the subjective, non-clinical aspects of decision-making for PAD might improve end-of-life care in this population.

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“…Practices which enhance autonomous choice in health care, e.g. physician initiated discussions of the subject of EAS at an early stage [ 67 ], or granting the wish of the patients as the motive to provide EAS [ 13 ], may influence direction and outcomes of provision of care [ 3 , 19 , 66 , 68 , 69 ]. The presence of an advance pro-euthanasia directive and higher education, which occurred more frequently in patients with an explicit request, may be in line with the perspective of control and with the perspective of choice.…”

Section: Discussionmentioning

confidence: 99%

Unbearable suffering and requests for euthanasia prospectively studied in end-of-life cancer patients in primary care

Ruijs¹,

Wal²,

Kerkhof

2014

BMC Palliat Care

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BackgroundAn international discussion about whether or not to legally permit euthanasia and (or) physician assisted suicide (EAS) is ongoing. Unbearable suffering in patients may result in a request for EAS. In the Netherlands EAS is legally permitted, and unbearable suffering is one of the central compulsory criteria. The majority of EAS is performed in cancer patients in the primary care practice. In around one in every seven end-of-life cancer patients dying in the primary care setting EAS is performed. The prevalence of unbearable symptoms and overall unbearable suffering in relationship to explicit requests for EAS was studied in a cohort of end-of-life cancer patients in primary care.MethodsA prospective study in primary care cancer patients estimated to die within six months was performed. Every two months suffering was assessed with the State-of-Suffering V (SOS-V). The SOS-V is a comprehensive instrument for quantitative and qualitative assessment of unbearable suffering related to 69 physical, psychological and social symptoms in five domains.ResultsOut of 148 patients who were asked to participate 76 (51%) entered the study. The studied population were 64 patients who were followed up until death; 27% explicitly requested EAS, which was performed in 8% of the patients. The final interview per patient was analyzed; in four patients the SOS-V was missing. Unbearable symptoms were present in 94% of patients with an explicit request for EAS and in 87% of patients without an explicit request. No differences were found in the prevalence of unbearable suffering for physical, psychological, social and existential symptoms, nor for overall unbearable suffering, between patients who did or who did not explicitly request EAS.ConclusionsIn a population of end-of-life cancer patients cared for in primary care no differences in unbearable suffering were found between patients with and without explicit requests for EAS. The study raises the question whether unbearable suffering is the dominant motive to request for EAS. Most patients suffered from unbearable symptoms, indicating that the compulsory criterion of unbearable suffering may be met a priori in most end-of-life cancer patients dying at home, whether they request EAS or not.

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De-tabooing dying control - a grounded theory study

Cited by 14 publications

References 41 publications

Lived experiences of end‐of‐life communication among nursing home staff: An interpretive phenomenological study

Lived experiences of end‐of‐life communication among nursing home staff: An interpretive phenomenological study

Acute Care Decision-Making for Patients with Advanced Dementia: An Exploratory Study Using Cognitive Task Analysis

Unbearable suffering and requests for euthanasia prospectively studied in end-of-life cancer patients in primary care

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