Palliative care may represent the final opportunity to collect genetic information from a dying person and provide life-saving knowledge for their relatives. Under-recognising people with a genetic condition means relatives miss opportunities for accurate genetic risk assessment, and appropriate screening or risk reduction advice. Palliative care nurses and physicians (clinicians) are uniquely positioned to initiate discussions about family history and genetics. However, little is known about the barriers and facilitators to integrating genetics and genomics in practice.
To identify the barriers and facilitators for palliative care clinicians towards integrating genetics and genomics into the care of people with palliative care needs
A search of Medline, EMBASE, CINAHL and PsycINFO generated 7823 unique articles, of which 48 were included. Using narrative synthesis, barriers and facilitators were mapped to the Theoretical Domains Framework (TDF).
Barriers were limitations to genetics knowledge and skill, low confidence initiating genetics discussions, lack of resources and guidelines, and concerns about discrimination and psychological harm. Facilitators were positive attitudes towards genetics, willingness to participate in discussions upon patient initiation and intention to engage in genetics education.
Palliative care clinicians need support to integrate genetics and genomics into their practice by development of theory-informed, evidence-based interventions. Intervention success will depend on researchers and clinicians understanding the context-specific barriers to design their intervention accordingly.
Palliative care clinicians are largely under-prepared to integrate genetic and genomic health information into routine clinical care. The knowledge-practice gap could limit patients’ and families’ access to vital genetic information. Ethical, legal and psychological concerns surrounding genetic information may lead to avoidance of genetics discussions. Building the capacity of the current and next generation of palliative care clinicians to integrate genetics and genomics into routine clinical practice is essential if opportunities afforded by precision medicine are to be fully realised.
Stephanie White and Dr Chris Jacobs declare no conflict of interest. Professor Jane Phillips is the president of the Palliative Care Nurses Association.
This project is funded by a Translational Cancer Research Network PhD Scholarship Top-up award, supported by the Cancer Institute NSW.