Conceptualizing suffering and pain

Gómez, Noelia Bueno

doi:10.1186/s13010-017-0049-5

Cited by 77 publications

(52 citation statements)

References 29 publications

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“…In the medical setting, the commonly used definition dates back to the 1990s, when Eric Cassell described suffering as: 'the state of severe distress associated with events that threaten the intactness of a person.' 14 Although the literature has since both criticized and refined this definition, 15,16,17,18 Cassell's definition remains the one most often used and cited.…”

Section: The Story Of Roos and Noormentioning

confidence: 99%

Pediatric Brain Tumors: Narrating Suffering and End-of-Life Decisionmaking

Brouwer¹,

Maeckelberghe²,

Brincke³

et al. 2020

Camb Q Healthc Ethics

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When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. What does the end-of-life for these children look like, and what motivates physicians and parents to make decisions that may affect the life and death of these children? This article highlights the story of the parents of the sisters Roos and Noor. When both their daughters were diagnosed with a hereditary brain tumor, they had to make similar decisions twice. Their story sheds light on the suffering of children in the terminal phase, and how this suffering may motivate parents and physicians to make decisions that influence the end of life of these children’s lives.We argue that complete knowledge about suffering in the terminal phase of children with brain tumors is impossible. However, by collecting experiences like those of Roos and Noor, we can move toward an experienced-based understanding and better guide parents and physicians through these hardest of decisions.

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Section: The Story Of Roos and Noormentioning

confidence: 99%

Pediatric Brain Tumors: Narrating Suffering and End-of-Life Decisionmaking

Brouwer¹,

Maeckelberghe²,

Brincke³

et al. 2020

Camb Q Healthc Ethics

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“…If we consider relief from suffering to be one of the central considerations for AS, it is reasonable to think that the acceptability of a request should not exclusively depend on the diagnosis of an incurable or terminal disease. [14, 15]…”

Section: Introductionmentioning

confidence: 99%

A qualitative study on existential suffering and assisted suicide in Switzerland

Gaignard

Hurst²

2019

BMC Med Ethics

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Background In Switzerland, people can be granted access to assisted suicide (AS) on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person’s conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate and manage it. This study explores the perspectives of care professionals and volunteers from a “right-to-die organization” on existential suffering as a motive for assisted suicide requests. Methods A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used. Results The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one’s image completely defined someone’s identity. Society’s perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a “pure” existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering. Conclusions Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a “toolbox” to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives. Electronic supplementary material The online version of this article (10.1186/s12910-019-0367-9) contains supplementary material, which is available to authorized users.

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“…The complex nature of existential suffering (ES)4–7 continues to fuel the controversy about whether it is a main indication for PS or not (especially if physical pain is under control) 8–10. Distinguishing kinds of suffering is problematic in itself, and objective or subjective assessment of different kinds of suffering is a hotly debated topic in the medical literature 11.…”

Section: Introductionmentioning

confidence: 99%

Physicians’ perceptions of palliative sedation for existential suffering: a systematic review

Rodrigues

Menten

Gastmans

2019

BMJ Support Palliat Care

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BackgroundPalliative sedation for existential suffering (PS-ES) is a controversial clinical intervention. Empirical studies about physicians’ perceptions do not converge in a clear position and current clinical practice guidelines do not agree either regarding this kind of intervention.AimTo gain deeper insight into physicians’ perceptions of PS-ES, the factors influencing it, the conditions for implementing it and the alternatives to it.DesignSystematic review of qualitative, quantitative and mixed-methods studies following the Peer Review Electronic Search Strategies and Preferred Reporting Items for Systematic Reviews and Meta-analyses protocols; quality appraisal and thematic synthesis methodology.Data sourcesSeven electronic databases (PubMed, CINAHL, Embase, Scopus, Web of Science, PsycINFO, PsycARTICLES) were exhaustively searched from inception through March 2019. Two reviewers screened paper titles, abstracts and full texts. We included only peer-reviewed journal articles published in English, French, German, Dutch, Spanish, Italian or Portuguese that focused on physicians’ perceptions of PS-ES.ResultsThe search yielded 17 publications published between 2002 and 2017. Physicians do not hold clear views or agree if and when PS-ES is appropriate. Case-related and individual-related factors that influenced physicians’ perceptions were identified. There is still no consensus regarding criteria to distinguish between necessary and sufficient conditions for invoking PS-ES. Some alternatives to PS-ES were identified.ConclusionsTo date, there is still no consensus on physicians’ perceptions of PS-ES. Further research is necessary to understand factors that influence physicians’ perceptions and philosophical-ethical presuppositions underlying this perceptions.

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Conceptualizing suffering and pain

Cited by 77 publications

References 29 publications

Pediatric Brain Tumors: Narrating Suffering and End-of-Life Decisionmaking

Pediatric Brain Tumors: Narrating Suffering and End-of-Life Decisionmaking

A qualitative study on existential suffering and assisted suicide in Switzerland

Physicians’ perceptions of palliative sedation for existential suffering: a systematic review

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