Addressing cancer family history at the end of life: How frequent, relevant, and feasible is it? A survey of palliative care providers

Abstract

A survey was conducted among palliative care providers from the province of Quebec (Canada) who attended the 2015 and 2017 yearly meetings of the Quebec Palliative Care Association. Eligible for this study were professionals involved in the provision of health care and services to endof-life cancer patients. Volunteers, spiritual care providers, music and pet therapists, recreation technicians, and health care managers without any medical background were not eligible as medical or health-related knowledge was necessary to understand and provide perspective on issues related to cancer family history. Researchers without clinical duties were also excluded as they are not likely to face questions regarding cancer family history from patients and relatives. An email containing a link to an online questionnaire was sent to 1191 meeting attendees in November 2016 with reminders in December 2016 and January 2017, and in May 2017 with two reminders in June 2017. The survey questionnaire was developed based on information provided by experienced palliative care providers during semi-structured interviews and then pretested with six providers. Respondents were asked to report the frequency at which they held discussions about cancer family history

Mainstreaming genetics and genomics: a systematic review of the barriers and facilitators for nurses and physicians in secondary and tertiary care

“…Most articles (n=40, 83%) reported both barriers and facilitators, while a small number only reported the facilitators (n=5, 10%) (20)(21)(22)(23)(24) or the barriers (n=3, 6%) (25)(26)(27). Themes were broadly associated with nurses' and physicians' capability (n=44, 92%), opportunity (n=39, 81%) and motivation (n=38 articles, 79%) to integrate genetics into practice (supplementary file 4).…”

“…While nurses and physicians routinely engaged in discussions about genetics with their patients (22,24,29,31,38,42,47,49,(52)(53)(54)(55)(56), all demonstrated limited understanding of general genetic concepts, and/or concepts relevant to their specialty (26,(28)(29)(30)(31)(32)(33)(34)(35)(36)(37). Despite knowledge deficits, nurses and physicians did engage in discussions about genetics with their patients (22,24,29,31,38,42,47,49,(52)(53)(54)(55)(56). In some specialties, family history information was routinely obtained (21,29,30,32,33,38,39,47,49,(52)(53)…”

“…Some nurses and physicians had concerns about the privacy of genetic information or the process of informed consent (9, 37, 43, 44, 52, 64, 66). However, if patients raised questions or concerns about genetics, nurses and physicians did engage in these discussions (9,24,34,36,42,43,45,49,55,60,62).…”

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

“…Discussing cancer family history in palliative care may help providers to identify at-risk relatives eligible for predictive genetic testing and preventive measures (Hartmann and Lindor, 2016). A recent paper from our group reported that most palliative care providers face questions from patients and family members regarding their cancer family history (Cleophat et al, 2019). Although the integration of genetics-related activities in palliative care has been favorably perceived by palliative care providers (Dearing and Taverner, 2018; Cleophat et al, 2019), they seem little inclined to engage in discussions about cancer family history with patients and families at the end of life.…”

“…A recent paper from our group reported that most palliative care providers face questions from patients and family members regarding their cancer family history (Cleophat et al, 2019). Although the integration of genetics-related activities in palliative care has been favorably perceived by palliative care providers (Dearing and Taverner, 2018; Cleophat et al, 2019), they seem little inclined to engage in discussions about cancer family history with patients and families at the end of life. Potential barriers to such discussions, including fear of negative psychological impacts among family members and providers’ lack of knowledge, have been debated in the literature (Dearing and Taverner, 2018; Gonthier et al, 2018).…”