Literature DB >> 28873121

Truth Telling in the Setting of Cultural Differences and Incurable Pediatric Illness: A Review.

Abby R Rosenberg1,2,3, Helene Starks2,3,4, Yoram Unguru5,6, Chris Feudtner7,8, Douglas Diekema2,3,4.   

Abstract

Importance: Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values. Observations: To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient's best interest. Conclusions and Relevance: It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.

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Mesh:

Year:  2017        PMID: 28873121      PMCID: PMC5675758          DOI: 10.1001/jamapediatrics.2017.2568

Source DB:  PubMed          Journal:  JAMA Pediatr        ISSN: 2168-6203            Impact factor:   16.193


  89 in total

1.  Responding to family requests for nondisclosure: the impact of oncologists' cultural background.

Authors:  Mahati Chittem; Phyllis Butow
Journal:  J Cancer Res Ther       Date:  2015 Jan-Mar       Impact factor: 1.805

2.  Educating doctors about breaking bad news: an Iranian perspective.

Authors:  Mohsen Tavakol; Roger Murphy; Sima Torabi
Journal:  J Cancer Educ       Date:  2008       Impact factor: 2.037

3.  The impact of perceived behavior on patient-physician satisfaction.

Authors:  L Baider; B Uziely; A K De-Nour
Journal:  Ann N Y Acad Sci       Date:  1997-02-20       Impact factor: 5.691

4.  Patients and doctors--evolution of a relationship.

Authors:  Robert D Truog
Journal:  N Engl J Med       Date:  2012-02-16       Impact factor: 91.245

5.  Knowledge and expectations of patients in palliative care: issues regarding communication with people affected by life-threatening diseases.

Authors:  Anna Giardini; Ines Giorgi; Cinzia Sguazzin; Simona Callegari; Pietro Ferrari; Pietro Preti; Danilo Miotti
Journal:  G Ital Med Lav Ergon       Date:  2011 Jan-Mar

6.  End-of-life care preferences of pediatric patients with cancer.

Authors:  Pamela S Hinds; Donna Drew; Linda L Oakes; Maryam Fouladi; Sheri L Spunt; Christopher Church; Wayne L Furman
Journal:  J Clin Oncol       Date:  2005-09-19       Impact factor: 44.544

7.  "Do not tell": what factors affect relatives' attitudes to honest disclosure of diagnosis to cancer patients?

Authors:  Mustafa Ozdogan; Mustafa Samur; Hakan Sat Bozcuk; Erkan Coban; Mehmet Artac; Burhan Savas; Arzu Kara; Zekiye Topcu; Yeliz Sualp
Journal:  Support Care Cancer       Date:  2004-04-16       Impact factor: 3.603

8.  Decisional Regret Among Parents of Children With Cancer.

Authors:  Jennifer W Mack; Angel M Cronin; Tammy I Kang
Journal:  J Clin Oncol       Date:  2016-09-30       Impact factor: 44.544

9.  Breaking bad news: structured training for family medicine residents.

Authors:  Lea Ungar; Mordechai Alperin; Gilad E Amiel; Zvi Beharier; Shmuel Reis
Journal:  Patient Educ Couns       Date:  2002-09

Review 10.  Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making.

Authors:  Chris Feudtner
Journal:  Pediatr Clin North Am       Date:  2007-10       Impact factor: 3.278

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  13 in total

1.  Taboo Topics in Adolescent and Young Adult Oncology: Strategies for Managing Challenging but Important Conversations Central to Adolescent and Young Adult Cancer Survivorship.

Authors:  Giselle K Perez; John M Salsman; Kaitlyn Fladeboe; Anne C Kirchhoff; Elyse R Park; Abby R Rosenberg
Journal:  Am Soc Clin Oncol Educ Book       Date:  2020-03

2.  Ethical Challenges in Pediatric Oncology Care and Clinical Trials.

Authors:  Daniel J Benedetti; Jonathan M Marron
Journal:  Recent Results Cancer Res       Date:  2021

3.  The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology.

Authors:  Judit Nyirő; Szilvia Zörgő; Földesi Enikő; Katalin Hegedűs; Péter Hauser
Journal:  Eur J Pediatr       Date:  2018-05-21       Impact factor: 3.183

4.  Interdependent functions of communication with adolescents and young adults in oncology.

Authors:  Bryan A Sisk; Megan Keenan; Ginny L Schulz; Erica Kaye; Justin N Baker; Jennifer W Mack; James M DuBois
Journal:  Pediatr Blood Cancer       Date:  2022-01-29       Impact factor: 3.167

5.  Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review.

Authors:  Bryan A Sisk; Kieandra Harvey; Annie B Friedrich; Alison L Antes; Lauren H Yaeger; Jennifer W Mack; James M DuBois
Journal:  Pediatr Blood Cancer       Date:  2021-10-18       Impact factor: 3.167

6.  Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer.

Authors:  Ursula M Sansom-Daly; Lori Wiener; Anne-Sophie Darlington; Hanneke Poort; Abby R Rosenberg; Meaghann S Weaver; Fiona Schulte; Antoinette Anazodo; Celeste Phillips; Louise Sue; Anthony R Herbert; Jennifer W Mack; Toni Lindsay; Holly Evans; Claire E Wakefield
Journal:  PLoS One       Date:  2022-07-08       Impact factor: 3.752

7.  End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice.

Authors:  Ursula M Sansom-Daly; Claire E Wakefield; Pandora Patterson; Richard J Cohn; Abby R Rosenberg; Lori Wiener; Joanna E Fardell
Journal:  J Adolesc Young Adult Oncol       Date:  2019-10-29       Impact factor: 2.223

8.  Talking With Children About Prognosis: The Decisions and Experiences of Mothers With Metastatic Cancer.

Authors:  Eliza M Park; Caitlin Jensen; Mi-Kyung Song; Justin M Yopp; Allison M Deal; Paula K Rauch; Joseph A Greer; Donald L Rosenstein
Journal:  JCO Oncol Pract       Date:  2021-05-03

9.  Dialysis Decision Making and Preferences for End-of-Life Care: Perspectives of Pakistani Patients Receiving Maintenance Dialysis.

Authors:  Fahad Saeed; Muhammad Sardar; Khalid Rasheed; Raza Naseer; Ronald M Epstein; Sara N Davison; Muhammad Mujtaba; Kevin A Fiscella
Journal:  J Pain Symptom Manage       Date:  2020-03-20       Impact factor: 3.612

10.  Discordance between Physician and the General Public Perceptions of Prognostic Disclosure to Children with Serious Illness: a Korean Nationwide Study.

Authors:  Min Sun Kim; Jihye Lee; Jin-Ah Sim; Jung Hye Kwon; Eun Joo Kang; Yu Jung Kim; Junglim Lee; Eun-Kee Song; Jung Hun Kang; Eun Mi Nam; Si-Young Kim; Hwan-Jung Yun; Kyung Hae Jung; June Dong Park; Young Ho Yun
Journal:  J Korean Med Sci       Date:  2018-11-26       Impact factor: 2.153

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