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Survey of palliative care providers’ needs, perceived roles, and ethical concerns about addressing cancer family history at the end of life

Published online by Cambridge University Press:  25 August 2020

Jude E. Cléophat Open the ORCID record for Jude E. Cléophat [Opens in a new window] ,
Sylvie Pelletier ,
Alberte Déry ,
Yann Joly ,
Pierre Gagnon ,
Ana Marin ,
Jocelyne Chiquette ,
Bruno Gagnon ,
Louis Roy  and
Vasiliki Bitzas
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Jude E. Cléophat
Affiliation:
Research Center of the CHU de Québec-Université Laval (Quebec City University Hospital Research Center), Oncology Division, Quebec City, QC, Canada Faculty of Pharmacy, Laval University, Quebec City, QC, Canada Laval University Cancer Research Center, Quebec City, QC, Canada
Sylvie Pelletier
Affiliation:
Research Center of the CHU de Québec-Université Laval (Quebec City University Hospital Research Center), Oncology Division, Quebec City, QC, Canada
Alberte Déry
Affiliation:
Association Québécoise de Soins Palliatifs (Quebec Palliative Care Association), Granby, QC, Canada
Yann Joly
Affiliation:
Center of Genomics and Policy, McGill University, Montreal, QC, Canada
Pierre Gagnon
Affiliation:
Research Center of the CHU de Québec-Université Laval (Quebec City University Hospital Research Center), Oncology Division, Quebec City, QC, Canada Laval University Cancer Research Center, Quebec City, QC, Canada Faculty of Medicine, Laval University, Quebec City, QC, Canada
Ana Marin
Affiliation:
Faculty of Medicine and Health Sciences, Sherbrooke University, Sherbrooke, QC, Canada CHU de Québec–Université Laval (Quebec City University Hospital-Laval University), Quebec City, QC, Canada Research Center of the CISSS de Chaudière-Appalaches (Chaudière-Appalaches Integrated Center for Health and Social Services), Lévis, QC, Canada
Jocelyne Chiquette
Affiliation:
Research Center of the CHU de Québec-Université Laval (Quebec City University Hospital Research Center), Oncology Division, Quebec City, QC, Canada Laval University Cancer Research Center, Quebec City, QC, Canada Faculty of Medicine, Laval University, Quebec City, QC, Canada CHU de Québec–Université Laval (Quebec City University Hospital-Laval University), Quebec City, QC, Canada
Bruno Gagnon
Affiliation:
Research Center of the CHU de Québec-Université Laval (Quebec City University Hospital Research Center), Oncology Division, Quebec City, QC, Canada Laval University Cancer Research Center, Quebec City, QC, Canada Faculty of Medicine, Laval University, Quebec City, QC, Canada
Louis Roy
Affiliation:
CHU de Québec–Université Laval (Quebec City University Hospital-Laval University), Quebec City, QC, Canada
Vasiliki Bitzas
Affiliation:
Jewish General Hospital, Palliative Care Unit, Montreal, QC, Canada
Hermann Nabi
Affiliation:
Research Center of the CHU de Québec-Université Laval (Quebec City University Hospital Research Center), Oncology Division, Quebec City, QC, Canada Laval University Cancer Research Center, Quebec City, QC, Canada Faculty of Medicine, Laval University, Quebec City, QC, Canada French National Institute of Health and Medical Research Institute, Epidemiology and Population Health Research Center, INSERM U.1018, Villejuif, France
Michel Dorval*
Affiliation:
Research Center of the CHU de Québec-Université Laval (Quebec City University Hospital Research Center), Oncology Division, Quebec City, QC, Canada Faculty of Pharmacy, Laval University, Quebec City, QC, Canada Laval University Cancer Research Center, Quebec City, QC, Canada Research Center of the CISSS de Chaudière-Appalaches (Chaudière-Appalaches Integrated Center for Health and Social Services), Lévis, QC, Canada
*
Author for correspondence: Michel Dorval, Oncology Division, CHU de Québec-Laval University Research Center, Hôpital du Saint-Sacrement, 1050, chemin Sainte-Foy, Québec, QC, Canada G1S 4L8. E-mail: michel.dorval@crchudequebec.ulaval.ca
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Abstract

Objective

Palliative care providers may face questions from patients and relatives regarding the heritability of cancers. Implications of such discussions for providers have been little explored. This study aimed to gather palliative care providers’ views on their main needs, roles, and ethical concerns regarding cancer family history discussions.

Method

The palliative care providers who participated in the 2015 and 2017 annual meetings of the Quebec Palliative Care Association were approached to complete a web-based questionnaire. Study participants answered the questionnaire between November 2016 and July 2017. They were asked to identify the most facilitating factor for cancer family history discussions, as well as their most important knowledge needs, potential role, and ethical concerns. Descriptive analyses were conducted.

Results

Ninety-four palliative care providers answered the questionnaire. Access to specialized resources to obtain information and protocols or guidelines were considered the most facilitating factors for cancer family history discussions by 32% and 20% of providers, respectively. Knowledge of hereditary cancers was the most relevant educational need for 53%. Thirty-eight per cent considered essential to be informed about their rights and duties regarding cancer family history discussions. Being attentive to patients’ concerns and referring families to appropriate resources were identified as the most relevant roles for palliative care providers by 47% and 34% of respondents, respectively. Fifty-eight per cent agreed that cancer family history discussions should be initiated only if beneficial to family members.

Significance of results

Education on hereditary cancers made consensus among palliative care providers as the most important knowledge need regarding discussing cancer family history at the end of life. Nonetheless, other less commonly expressed needs, including access to genetics specialists, protocols, or guidelines, and awareness of provider rights and duties concerning such discussions, deserve attention. Answering providers’ needs might help optimize cancer predisposition management in palliative care.

Keywords

Genetic predisposition to diseaseMedical history takingNeoplasmPalliative careSurveys and questionnaires
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 2 , April 2021 , pp. 217 - 222
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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