Mainstreaming genetics in palliative care: barriers and suggestions for clinical genetic services

Abstract

Palliative healthcare professionals (PHCPs) frequently do not refer their eligible patients for genetic testing. After the death of the affected individual, clinically relevant information for family members is lost. In previous research, PHCPs stated that the end-of-life setting is not appropriate to discuss genetic issues. It is unclear if this has changed due to increasing awareness of genetics in the media and efforts to mainstream genetic testing. Semi-structured interviews of PHCPs were analysed by thematic analysis. Seven PHCPs (four nurses, two consultants, and one clinical psychologist) were interviewed. Participants reported feeling unfamiliar with the role of clinical genetics services, and did not feel confident in addressing genetic issues with their patients. A lack of scientific knowledge and unawareness of existing infrastructure to support their patients were cited. Many stated that palliative patients are interested in exploring a potential hereditary component to their disease, and acknowledged the potential for psychological benefit for their patients and their families. Most stated that addressing genetics fits within their skill set, but expressed concern about issues of consent, logistical difficulties, and ethical dilemmas. These perceptions differ considerably from those reported in existing literature. Importantly, each participant stated that the potential benefits of addressing genetic issues outweighed the potential for harm in most cases. These results suggest a need for clinical genetics staff to develop closer links with their local PHCPs and to provide education. Clinical psychologists may also be a helpful resource to address PHCPs' concerns.

Survey of palliative care providers’ needs, perceived roles, and ethical concerns about addressing cancer family history 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).…”

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

“…This latter observation may be explained by factors such as lacking knowledge and confidence to address cancer family history issues 5 and worrying about causing detrimental psychological effects in patients and family members. 3 Basic training on hereditary cancers including related psychological aspects might help providers address patients’ or relatives’ concerns. Considering that most physicians reported having discussions about cancer family history and given their role in cancer prevention, they may represent the primary target audience to receive such training.…”

“…Discussions on cancer heritability between patients, family members, and providers may become more frequent in palliative care due to increasing public awareness about advances in genomics and risks associated with a cancer family history. 2 Although a few studies have examined the views of palliative care providers about discussing cancer family history or genetics in palliative care settings, [3][4][5] the frequency of such discussions is unknown. In this study, we estimate the frequency of cancer family history discussions in palliative care and gather the points of view of providers about the relevance and feasibility of such discussions.…”

Opportunities and Challenges in Interpreting and Sharing Personal Genomes

“…Can the tested people be offered management strategies that are effective or is the effect just increased anxiety over future health (their own and that of potential offspring)? [8] Saskia Sanderson (University College London, UK) reported that genomic prediction of disease risk alone has little effect on behaviors such as diet and exercise, but has a strong effect on medical behavior including sharing information with doctors or following through with medications. Furthermore, they observed that mental distress following the prediction of genetic risk is usually small and temporary [9].…”