The Existential Dimension of Palliative Care: The Mirror Effect of Death on Life

Drillaud, Frédérique; Saussac, Camille; Keusch, Florence; Lafaye, Danièle; Bely, H.; Averous, Véronique; Frasca, Matthieu; Baudry, Patrick; Burucoa, Benoît

doi:10.1177/0030222820952187

Cited by 6 publications

(3 citation statements)

References 26 publications

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“…Many studies show that individuals who are nearing the end of their life often experience varying degrees of existential anguish and distress which may become actual barriers to provision and receipt of timely palliative care when the person (or their family) refuses palliative care due to fear or stress. [82][83][84][85] The emerging interest in spiritual, religious, and existential aspects of care within palliative care frameworks is a positive sign that more attention is being placed in what constitute human suffering, beyond just physical pain. However, published studies suggest that there is still a room for improvement when it comes to spiritual needs discussions in clinical settings.…”

Section: Discussionmentioning

confidence: 99%

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies

et al. 2022

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Background: Frameworks are the conceptual underpinnings of the study. Both conceptual and theoretical frameworks are often used in palliative and end-of-life care studies to help with study design, guide, and conduct investigations. While an increasing number of investigators have included frameworks in their study, to date, there has not been a comprehensive review of frameworks that were utilized in palliative and end-of-life care research studies. Aim: To summarize conceptual and theoretical frameworks used in palliative and end-of-life care research studies. And to synthesize which of eight domains from the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care (fourth edition) each framework belongs to. Design: Systematic review. Data sources: Four electronic databases (EMBASE, the Cumulative Index to Nursing and Allied Health, PsychINFO, and PubMed) were searched from July 2010 to September 2021. Results: A total 2231 citations were retrieved, of which 44 articles met eligibility. Across primary studies, 33,801 study participants were captured. Twenty-six investigators (59.1%) proposed previously unpublished frameworks. In 10 studies, investigators modified existing frameworks, mainly to overcome inherent limitations. In eight studies, investigators utilized existing frameworks referenced in previously published studies. There were eight orientations identified among 44 frameworks we reviewed (e.g. system, patient, patient-doctor). Conclusions: We examined palliative and end-of-life research studies to identify and characterize conceptual or theoretical frameworks proposed or utilized. Of 44 frameworks we reviewed, 21 studies (47.7%) were aligned with a Clinical Practice Guideline’s single domain, while the rest two or more of eight guidelines in quality palliative care domains.

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Section: Discussionmentioning

confidence: 99%

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies

et al. 2022

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“…It can further be argued that the way "the palliative patient" was discursively positioned as being in the last stage of life and on the negative side of the dualism curable/incurable limits alternative possibilities with which the person can identify with; as someone who is not per definition robbed of a future, can still go through several life stages and enjoy life. In addition, most patients confronted with the end of life feel a pressing need for recognition as a person, and not as a patient (Drillaud et al, 2020). The widely used term "palliative patient" as such might not be as innocent and replacing it by "a person with palliative care needs" could be a valuable suggestion.…”

Section: What This Study Addsmentioning

confidence: 99%

The Online Representation of Palliative Care by Practice, Policy, and Advocacy Organizations: Definitional Variations and Discursive Tensions

et al. 2021

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Negative beliefs and a lack of clarity surrounding the meaning of palliative care have been widely reported as obstacles to its uptake. Information available to the public possibly contributes to this. A descriptive and discourse-theoretical analysis was conducted of information spread online by palliative care policy, advocacy, and practice organizations. Discrepancies were found in the way palliative care was defined in relation to curative, end-of-life, terminal, and supportive care. Beyond these definitional variations, meaning was generated through the representation of palliative care as a culture, connected to total care, compassion, and openness. Tensions arose around the concepts of autonomy, a natural death, and an emphasis on the quality of life away from death and dying. Overall, this study showed that the online information of palliative care is a potential source of confusion and might even contribute to its stigmatization. Insights are provided that may help improve clarity toward the public.

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“…C'est en conclusion de ce travail de recherche que le terme « souffrance existentielle » s'est révélé être le plus évocateur afin de signifier ce qui en découlait. Suite à cela, j'ai été recrutée par le CHU de Bordeaux afin de réaliser une étude exploratoire sur le thème de la « dimension existentielle » en soins palliatifs 21 . Dans une démarche liée à l'anthropologie de la communication 22 , cette recherche s'est poursuivie dans le cadre d'une thèse en sciences de l'information et de la communication.…”

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La démarche palliative ou « l’esprit du soin »

Drillaud¹,

Keusch²,

Mélin³

et al. 2022

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Le rapport à l’inconnu que représente la mort est ce que nous avons tous en commun sans exception. En 1986, dans un contexte où le sida bouscule le monde médical, les soins palliatifs sont institutionnalisés en France. L’effet-miroir de la mort sur la vie transmet en effet la prise de conscience de l’importance du lien à l’autre et de notre vulnérabilité commune, révélant ainsi notre interdépendance et la nécessité du prendre soin dans nos vies. En soins palliatifs, c’est dans une approche globale qu’une équipe interdisciplinaire est présente pour accompagner à domicile ou en institution, la personne qui ne peut être guérie ainsi que ses proches. Par leur organisation et leur médiation autour des incommunications, les soins palliatifs permettent de faire place à la dimension existentielle où se révèle alors une communication de « l’esprit du soin » qui ne peut se défaire de la relation à l’autre.

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The Existential Dimension of Palliative Care: The Mirror Effect of Death on Life

Cited by 6 publications

References 26 publications

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies

Systematic review of conceptual and theoretical frameworks used in palliative care and end-of-life care research studies

The Online Representation of Palliative Care by Practice, Policy, and Advocacy Organizations: Definitional Variations and Discursive Tensions

La démarche palliative ou « l’esprit du soin »

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