Integrating genomics into the care of people with palliative needs: A global scoping review of policy recommendations

Abstract

BACKGROUND: Genomics has growing relevance to palliative care, where testing largely benefits relatives. Integration of genomics into the care of patients with palliative care needs has not received the critical attention it requires, and health professionals report a lack of policy guidance to support them to overcome practice barriers. SUMMARY: To identify policy recommendations related to: (1) integrating genomics into the care of patients with palliative care needs and their families, and (2) care of the family unit, we performed a scoping review of palliative care and genomic policies. Two of 78 policies recommended integrating genomics into palliative care. Six palliative care policies mentioned genomics in background information but were without relevant recommendations. No genomics policies mentioned palliative care in the background information. Across all policies, guidance related to “Delivering Family-Centred Care” was the most frequent recommendation related to care of the family unit, (n=62/78, 79.5%). KEY MESSAGES: We identified a policy gap related to integrating genomics into palliative care. Without policy guidance, health services are less likely to commit funding towards supporting health professionals, reducing the personal and clinical benefits of genomics to patients and relatives. Framing genomic information as family-centred care enables policy makers to communicate the value of genomics to palliative care that will resonate with genomic and palliative care stakeholders. These findings increase awareness among policy makers of the benefits of genomic information to patients with palliative care needs and their families and call for incorporation of appropriate recommendations into palliative care and genomic policy.