Hostname: page-component-78c5997874-t5tsf Total loading time: 0 Render date: 2024-11-17T14:54:53.708Z Has data issue: false hasContentIssue false
  • English
  • Français

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
...Show all authors
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: [email protected]
Get access Rights & Permissions [Opens in a new window]

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
Check for updates
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Aday, AW and MacRae, CA (2017) Genomic medicine in cardiovascular fellowship training. Circulation 136(4), 345–346.CrossRefGoogle ScholarPubMed
Baile, WF, Palmer, JL, Bruera, E, et al. (2011) Assessment of palliative care cancer patients’ most important concerns. Supportive Care in Cancer 19(4), 475–481.CrossRefGoogle ScholarPubMed
Bevier, M, Sundquist, K and Hemminki, K (2012) Risk of breast cancer in families of multiple affected women and men. Breast Cancer Research and Treatment 132(2), 723–728.CrossRefGoogle ScholarPubMed
Cleophat, JE, Pelletier, S, Joly, Y, et al. (2019) Addressing cancer family history at the end of life: How frequent, relevant, and feasible is it? A survey of palliative care providers. Palliative Medicine 33(7), 856–858.CrossRefGoogle ScholarPubMed
Cleophat, JE, Marin, A, Pelletier, S, et al. (2020) What do cancer patients’ relatives think about addressing cancer family history and performing genetic testing in palliative care? European Journal of Human Genetics 28(2), 213–221.CrossRefGoogle ScholarPubMed
Dearing, A and Taverner, N (2018) Mainstreaming genetics in palliative care: Barriers and suggestions for clinical genetic services. Journal of Community Genetics 9(3), 243–256.CrossRefGoogle ScholarPubMed
Gonthier, C, Pelletier, S, Gagnon, P, et al. (2018) Issues related to family history of cancer at the end of life: A palliative care providers’ survey. Familial Cancer 17(2), 303–307.CrossRefGoogle ScholarPubMed
Green, RC, Berg, JS, Grody, WW, et al. (2013) ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine : Official Journal of the American College of Medical Genetics 15(7), 565–574.CrossRefGoogle ScholarPubMed
Hartmann, LC and Lindor, NM (2016) The role of risk-reducing surgery in hereditary breast and ovarian cancer. New England Journal of Medicine 374(5), 454–468.CrossRefGoogle ScholarPubMed
Heckel, L, Heynsbergh, NL and Livingston, PM (2019) Are cancer helplines effective in supporting caregivers? A systematic review. Supportive Care in Cancer 27(9), 3219–3231.CrossRefGoogle ScholarPubMed
Hopwood, P (2005) Psychosocial aspects of risk communication and mutation testing in familial breast-ovarian cancer. Current Opinion in Oncology 17(4), 340–344.CrossRefGoogle ScholarPubMed
Lillie, AK, Clifford, C and Metcalfe, A (2011) Caring for families with a family history of cancer: Why concerns about genetic predisposition are missing from the palliative agenda. Palliative Medicine 25(2), 117–124.CrossRefGoogle ScholarPubMed
Livraghi, L and Garber, JE (2015) PARP inhibitors in the management of breast cancer: Current data and future prospects. BMC Medicine 13, 188.CrossRefGoogle ScholarPubMed
Lyons, TG and Robson, ME (2018) Resurrection of PARP inhibitors in breast cancer. Journal of National Comprehensive Cancer Network 16(9), 1150–1156.CrossRefGoogle ScholarPubMed
Mateo, J, Carreira, S, Sandhu, S, et al. (2015) DNA-repair defects and olaparib in metastatic prostate cancer. New England Journal of Medicine 373(18), 1697–1708.CrossRefGoogle ScholarPubMed
McClellan, KA, Kleiderman, E, Black, L, et al. (2013) Exploring resources for intrafamilial communication of cancer genetic risk: We still need to talk. European Journal of Human Genetics 21(9), 903–910.CrossRefGoogle Scholar
Metcalfe, A, Pumphrey, R and Clifford, C (2010) Hospice nurses and genetics: Implications for end-of-life care. Journal of Clinical Nursing 19(1-2), 192–207.CrossRefGoogle ScholarPubMed
Mishra, S, Bhatnagar, S, Philip, FA, et al. (2010) Psychosocial concerns in patients with advanced cancer: An observational study at regional cancer centre, India. The American Journal of Hospice & Palliative Care 27(5), 316–319.CrossRefGoogle ScholarPubMed
Quillin, JM, Bodurtha, JN and Smith, TJ (2008) Genetics assessment at the end of life: Suggestions for implementation in clinic and future research. Journal of Palliative Medicine 11(3), 451–458.CrossRefGoogle ScholarPubMed
Quillin, JM, Bodurtha, JN, Siminoff, LA, et al. (2011) Physicians’ current practices and opportunities for DNA banking of dying patients with cancer. Journal of Oncology Practice 7(3), 183–187.CrossRefGoogle ScholarPubMed
Roeland, EJ, Dullea, AD, Hagmann, CH, et al. (2017) Addressing hereditary cancer risk at the end of life. Journal of Oncology Practice 13(10), e851–e856.CrossRefGoogle ScholarPubMed
Saulnier, KM, Cinà, M, Chan, B, et al. (2018) Communication of genetic information in the palliative care context: Ethical and legal issues. Medical Law International 18(4), 219–240.CrossRefGoogle Scholar
Valdez, R, Yoon, PW, Qureshi, N, et al. (2010) Family history in public health practice: A genomic tool for disease prevention and health promotion. Annual Review of Public Health 31, 69–87. 61 p following 87.CrossRefGoogle ScholarPubMed