The language of dying: Communication about end-of-life in residential aged care

Omori, Maho; Jayasuriya, Jude; Scherer, Sam; Dow, Briony; Vaughan, Marie; Savvas, Steven

doi:10.1080/07481187.2020.1762263

Cited by 17 publications

(19 citation statements)

References 27 publications

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“… 13 Similarly, data suggest that patients and families prefer that clinicians use clear, direct language when discussing death. 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 Despite these recommendations and preferences, hesitancy to reference death using the word itself is common. Studies in adult medicine have found few uses of words such as die , death , and dying in medical documentation, 22 standardized patient scenarios, 23 , 24 , 25 and recorded encounters between clinicians, patients, and families 26 , 27 , 28 when death is discussed at all.…”

Section: Introductionmentioning

confidence: 99%

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants

et al. 2022

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ImportanceCommunication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death.ObjectiveTo characterize (1) the way death is discussed in family meetings between parents of critically ill infants and the clinical team and (2) how discussion of death differs between clinicians and family members.Design, Setting, and ParticipantsThis longitudinal qualitative study took place at a single academic hospital in the southeast US. Patients were enrolled from September 2018 to September 2020, and infants were followed up longitudinally throughout their hospitalization. Participants included families of infants with neurologic conditions who were hospitalized in the intensive care unit and had a planned family meeting to discuss neurologic prognosis or starting, not starting, or discontinuing life-sustaining treatment. Family meetings were recorded, transcribed, and deidentified before being screened for discussion of death.Main Outcomes and MeasuresThe main outcome was the language used to reference death during family meetings between parents and clinicians. Conventional content analysis was used to analyze data.ResultsA total of 68 family meetings involving 36 parents of 24 infants were screened; 33 family meetings (49%) involving 20 parents (56%) and 13 infants (54%) included discussion of death. Most parents involved in discussion of death identified as the infant’s mother (13 [65%]) and as Black (12 [60%]). Death was referenced 406 times throughout the family meetings (275 times by clinicians and 131 times by family members); the words die, death, dying, or stillborn were used 5% of the time by clinicians (13 of 275 references) and 15% of the time by family members (19 of 131 references). Four types of euphemisms used in place of die, death, dying, or stillborn were identified: (1) survival framing (eg, not live), (2) colloquialisms (eg, pass away), (3) medical jargon, including obscure technical terms (eg, code event) or talking around death with physiologic terms (eg, irrecoverable heart rate drop), and (4) pronouns without an antecedent (eg, it). The most common type of euphemism used by clinicians was medical jargon (118 of 275 references [43%]). The most common type of euphemism used by family members was colloquialism (44 of 131 references [34%]).Conclusions and RelevanceIn this qualitative study, the words die, death, dying, or stillborn were rarely used to refer to death in family meetings with clinicians. Families most often used colloquialisms to reference death, and clinicians most often used medical jargon. Future work should evaluate the effects of euphemisms on mutual understanding, shared decision-making, and clinician-family relationships.

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Section: Introductionmentioning

confidence: 99%

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants

et al. 2022

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“…Our study contributes to a fuller understanding of features involved in developing staff competence for EoL conversations. The initial staff discussions in the workshops corroborated a recurrent problem noted in the international literature, that is, a silence surrounding death, which may be assimilated into, and reinforced by, the work culture (Alftberg et al, 2018;Omori et al, 2020). Throughout the workshop series, however, participants became more supportive of, and explicitly expressed feeling more prepared for, EoL conversations, although several stated they still did not feel entirely comfortable about initiating conversations themselves.…”

Section: Discussionmentioning

confidence: 59%

Continuums of Change in a Competence-Building Initiative Addressing End-of-Life Communication in Swedish Elder Care

et al. 2021

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Conversations about values for the end-of-life (EoL) between residents, relatives, and staff may allow EoL preparation and enable value-concordant care, but remain rare in residential care home (RCH) practice. In this article, longitudinal qualitative analysis was used to explore changes in staff discussions about EoL conversations throughout workshop series based on reflection and knowledge exchange to promote EoL communication in RCHs. We identified three overall continuums of change: EoL conversations became perceived as more feasible and valuable; conceptualizations of quality EoL care shifted from being generalizable to acknowledging individual variation; and staff’s role in facilitating EoL communication as a prerequisite for care decision-making was emphasized. Two mechanisms influenced changes: cognitively and emotionally approaching one’s own mortality and shifting perspectives of EoL care. This study adds nuance and details about changes in staff reasoning, and the mechanisms that underlie them, which are important aspects to consider in future EoL competence-building initiatives.

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“…This study adds to the extant research that indicates that communication skills are a precondition for EOL conversations [51][52][53]. The direction and depth of EOL conversations seemed largely in uenced by staff's interest and curiosity about what matters to other people.…”

Section: Discussionmentioning

confidence: 71%

Use, Usability, And Impact of A Tool To Support Conversations About End-of-Life Preferences In Residential Elder Care – A Qualitative Study of Staff Experiences

Johansson

Tishelman

Cohen

et al. 2021

Preprint

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Background: If EOL care is to be person-centred and value-concordant, proactive conversations about individual preferences between residents, relatives, and staff are required. Nevertheless, the prevalence of conversations about preferences for EOL care is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skills and confidence. Conversation tools may be useful to support staff in facilitating EOL conversations, but often focus more on documenting treatment priorities than on exploring underlying values and reasoning for preferences. In this study, we use the DöBra cards, the Swedish version of the GoWish cards, to support discussions about EOL care values and preferences in RCHs, and explore staff perspectives on use, usability, and impact. Methods: This qualitative study was based on data generated from two participatory action research processes in which RCH staff tested and evaluated use of DöBra cards in EOL conversations. Data comprise 6 interviews and 8 group meetings with a total of 13 participants from 7 elder care facilities. Qualitative content analysis was performed to identify key concepts in relation to use, usability, and impact of the DöBra cards with residents and/or relatives.Results: Based on participants’ experiences of using the DöBra cards as an EOL conversation tool in RCHs, we identified three main categories in relation to its usefulness. Outcomes of using the cards (1) included the outlining of content of conversations and supporting connection and development of rapport. Perceived impact (2) related to enabling openings for future communication and aligning care goals between stakeholders. Use and usability of the cards (3) were influenced by supporting and limiting factors on the personal and contextual level.Conclusions: This study demonstrates how the DöBra cards was found to be useful by staff for facilitating conversations about EOL values, influencing both the content of discussion and interactions between those present. The tool encouraged reflection and interaction, which staff perceived as potentially helpful in building preparedness for future care-decision making. The combination of providing a shared framework and being adaptable in use appeared to be key features for the DöBra cards usability in the RCH setting.

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The language of dying: Communication about end-of-life in residential aged care

Cited by 17 publications

References 27 publications

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants

Continuums of Change in a Competence-Building Initiative Addressing End-of-Life Communication in Swedish Elder Care

Use, Usability, And Impact of A Tool To Support Conversations About End-of-Life Preferences In Residential Elder Care – A Qualitative Study of Staff Experiences

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