Why is dementia different? Medical students' views about deceiving people with dementia

Tullo, Ellen; Lee, Richard Philip; Robinson, Louise; Allan, Louise

doi:10.1080/13607863.2014.967173

Cited by 13 publications

(5 citation statements)

References 20 publications

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“…The uncertainty expressed by students about being able to be completely honest with PLWD at all times is reflected by literature on the ethics of lying and deception in dementia care. Whilst a minority of ethical discourse maintains a deontological view that lying in clinical practice is never acceptable (Bakhurst, 1992; Jackson, 2001), student opinion emerging from this study – that there are rare and specific circumstances where lying might be justifiable is congruent with research studies demonstrating that ‘white lies’ and deception do occur in dementia care (Elvish, James, & Milne, 2010; Hasselkus, 1997; Hertogh, The, Miesen, & Eefsting, 2004; Tuckett, 2012; Tullo, Lee, Robinson, & Allan, 2015). As per the diversity reflected in this literature as to which circumstances might be justifiable, students were similarly divided in their opinions.…”

Section: Discussionsupporting

confidence: 55%

“…The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: An article reporting on early data collection and analysis from the same research project, with an emphasis on cross-cultural analysis, has been published as a book chapter (Young, T. J., Tullo, E., & Lee, R. (2015). Person-centredness, culture and communication in dementia care: Attitudes among medical students.…”

Section: Declaration Of Conflicting Interestsmentioning

confidence: 99%

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Medical students’ views about person-centred communication in dementia care

2016

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Adopting principles of person-centred communication has been highlighted as one strategy to improve care of people living with dementia (PLWD) in health and social care settings. However, person-centred communication is interpreted and applied variably in different settings, and healthcare professionals' views about communicating with PLWD are under-explored. This study aimed to investigate medical students' views about the principles and applicability of a model of person centred communication - the Dementia Model of Effective Communication (DeMEC) - to clinical practice. Quantitative and qualitative data was collected using questionnaires ( n = 531), focus groups ( n = 21) and interviews ( n = 10). Students generally endorsed the person-centred approach to communication, but two aspects were highlighted as complex and divisive - the acceptability or otherwise of lying, and of communicating with family in advance of the PLWD. We discuss the nature of these communicative dilemmas, implications for the education and training of medical students, and future directions for research.

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Section: Discussionsupporting

confidence: 55%

Section: Declaration Of Conflicting Interestsmentioning

confidence: 99%

Medical students’ views about person-centred communication in dementia care

2016

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“…Seaman and Stone (2017) highlight the complexities of deception in the context of dementia, noting that caring for people living with dementia involves dynamic interactions among a network of care providers, across various different settings. Collaborative, shared decision-making regarding the best interest of the person living with dementia is therefore critical (Tullo et al, 2015;Turner et al, 2017). In this way all key stakeholders are involved and are aware of the decision made regarding lying promoting consistency in approach (James & Caiazza, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…In the context of health care professionals, some writers highlight the need to better prepare and train health care professionals to communicate more effectively with people living with dementia (Tullo, Lee, Robinson, & Allan, 2015) and the importance of using collaborative interprofessional decision making (Turner et al., 2017). However, training for informal/unpaid carers as to how best respond when the person with dementia makes statements which are incorrect appears to be somewhat lacking, none of the informal/unpaid carers in our study reported receiving such training.…”

Section: Discussionmentioning

confidence: 99%

Telling a ‘good or white lie’: The views of people living with dementia and their carers

Casey

Lynch²,

Murphy

et al. 2019

Dementia

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Objective: A common symptom of cognitive decline in people living with dementia, or people with memory problems, the cause of which has not yet been diagnosed, is the person repeatedly asking for loved ones who are deceased or making statements that are incorrect. Carers are then faced with a dilemma, do they avoid and distract or 'correct' the person and tell the 'truth', or tell a lie. This paper explores the concept of lying from the perspective of people living with dementia in the community and their informal/unpaid carers. Methods: A descriptive qualitative study utilising focus groups (FG) to collect the data was conducted. Three FG's with a purposive sample of people with memory problems (n = 14) and three FG's with informal/unpaid carers (n = 18) were undertaken. Qualitative content analysis was used to analyse the data. Results: All participants considered that blatant lying with the intention to deceive and do harm is not acceptable. However, telling a 'good lie' or 'white lie' to alleviate distress was in certain circumstances considered acceptable. The intention behind the 'lie' in their view had to be to do good, and the informal/unpaid carer telling the lie had to really 'know the person' and be cognisant of family preferences. Some informal/unpaid carers acknowledged that it may be acceptable for health care professionals to tell a 'good lie' or 'small lie' in certain circumstances. However, health professionals need to 'know the person' and need to consider informal/family caregivers' wishes. Conclusion: Lying was only considered acceptable in the context of knowing the person and when done with the intention not to harm or deceive, undertaken with empathy, and only for the purpose of mitigating the person living with dementia's distress.

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“…While the question of whether people with a probable dementia should be told their diagnosis has largely receded from the academic literature and current western health care practice, there is great nuance and variability in how the diagnostic process proceeds, bearing in mind variations in individuals' cognitive and communicative abilities, degree of insight, and (potential) co-morbidities. Recent research using focus groups and interviews with current medical students, for example, highlights that deception remains a live issue in the context of dementia health care and that issues of capacity, perceived vulnerability and family dynamics all complicate clinical judgments in the dementia care context (Tullo et al, 2015); and this likely impacts on clinical communication.…”

Section: Diagnostic Disclosurementioning

confidence: 99%

Pathways Within Dementia Diagnosis

Plejert¹,

Jones²,

Peel³

2017

Living With Dementia

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IntroductionIn this chapter, we foreground different dementia diagnostic pathways across three temporal phases of the process of diagnosis; from initial history taking in memory clinic assessment, to the disclosure and discussion of diagnosis. Therefore we are interested in, not only pathways to a diagnosis of dementia but rather the pathways and experiences within the diagnostic process, exploring the interactions that occur during this process. Specifically we focus on: first, conversational profiling and differential diagnosis during memory clinic assessment; second, interpreter-mediated dementia evaluations; and third disclosure and discussion of diagnosis.

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Why is dementia different? Medical students' views about deceiving people with dementia

Cited by 13 publications

References 20 publications

Medical students’ views about person-centred communication in dementia care

Medical students’ views about person-centred communication in dementia care

Telling a ‘good or white lie’: The views of people living with dementia and their carers

Pathways Within Dementia Diagnosis

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