Introduction: Identifying the genetic contribution of disease among palliative patients has utility for family members with the possibility to improve health and save lives if preventative measures are indicated and actioned. However, up to a quarter of patients with life-limiting conditions, and their relatives, are missing the opportunity for genetic counselling or testing prior to entering the terminal phase of their disease. While genetic testing in the end-of-life context has little clinical benefit for the dying person, the genetic insights gained could provide relatives with crucial information to help them make health, reproductive, social and financial decisions. If the need for genetic testing is not identified earlier in the individual’s disease, palliative care becomes the final opportunity to discuss genetics before the opportunity is lost.
Aim: To present early findings of The GIFT project (Genetic Information for Families of the Terminally Ill), which aims to build an evidence base of the barriers and facilitators towards integrating genetics and genomics into the care of people with palliative care needs and their families, identify knowledge gaps and understand what action is required to support health professionals.
Methods: The GIFT project uses an exploratory-sequential mixed methods design, underpinned by a systematic review that identified and described the barriers and facilitators for nurses and doctors in secondary and tertiary care towards integrating genetics into practice. A two-pronged qualitative study explored the views and experiences of 1) palliative care health professionals and 2) genetics health professionals when discussing genetics with people who have palliative care needs, and their families. A systematic scoping review interrogated the policy environment to identify and describe available guidance related to the integration of genetics into palliative care. The findings from these studies informed a quantitative survey of palliative care and genetics health professionals, which will seek to determine whether the evidence generated thus far is generalizable to a wider population.
Results to date: Early findings suggest there is a lack of leadership and guidance to help health professionals manage the complex interactions arising from discussions about genetics in the palliative care context. Several opportunities and challenges have been identified for further investigation. Palliative care and genetics health professionals report patients are altruistically interested in discussing the genetic contribution to their illness in order to leave a legacy for their families, but express concern that raising genetics could cause psychological harm to patients and relatives. For palliative care health professionals, navigating conversations about genetics requires balancing the potential harms against benefits and deliberations about whether addressing genetics aligned with their role and scope. Genetics health professionals describe the challenge of operationalising family-centred care within health systems designed to privilege individual autonomy. Both genetics and palliative care health professionals are calling for organisational leadership and would like to improve connectivity between palliative care and genetics colleagues.
Summary: These studies provide emerging evidence of a systemic lack of leadership towards integrating genetics into palliative care, as well as barriers to integration at the individual health professional level. Suggestions to overcome practical barriers will be provided.