Shades of truth: Cultural and psychological factors affecting communication in pediatric palliative care
Palliative Care; Pediatrics; Communication; Charting the Territory; Neoplasms; Best Practices (Davies); truth telling; clinical ethics; cultural factors; hepatoblastoma; Professional Ethics; Sociocultural Factors; Truth
Communication with children who have life-threatening illnesses is a major challenge. Communication practices are greatly influenced by factors such as the child’s age, the parents’ wishes, and the cultural norms. This article presents the case of a 12-year-old Japanese boy with advanced hepatoblastoma. The patient also was diagnosed with Asperger’s syndrome, which impairs interpersonal communication. The case is discussed from the perspective of clinical ethics, especially with regard to truth telling. The health care team faced an ethical dilemma because of the complications involved. Physicians treating children with cancer should be aware of these issues to be able to effectively communicate with their patients. (PsycINFO Database Record (c) 2011 APA, all rights reserved) (journal abstract)
Hatano Y; Yamada M; Fukui K
Journal Of Pain And Symptom Management
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2010.12.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2010.12.002</a>
The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis
end of life; informal carer; Qualitative; renal; staff challenges; truth telling
AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff. DESIGN: Secondary analysis of data using a supra-analysis design to identify commonality of experiences. METHODS: Secondary 'supra-analysis' was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies. RESULTS: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence. CONCLUSIONS: Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff. RELEVANCE TO CLINICAL PRACTICE: There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.
2014-05
Noble H; Price JE; Porter S
Journal Of Clinical Nursing
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/jocn.12634" target="_blank" rel="noreferrer">10.1111/jocn.12634</a>