Many of you who are regular Palliverse readers will be aware of our ongoing promotion regarding the need for the community as a whole to support open discussions about death, dying and end-of-life care. A group of researchers from the University of Alabama have recently published on a novel approach to this issue. In this study, they report on the effects of training lay community members as ‘health navigators’, who work with patients in hospital to help them understand the process of advance care planning, and to facilitate their further discussions with their family and healthcare team.
The responsibility for initiating timely advance care planning discussions has traditionally fallen to professionals, in particular medical, nursing and social workers, who are seen to possess the appropriate clinical skills and are well placed to identify patients in need of these discussions. However these professionals often lack the time to cover advance care planning in the necessary detail, meaning that such discussions are often brief, if undertaken at all.
In a recent paper published in the Journal of Pain & Symptom Management, Gabrielle Rocque and colleagues report on an innovative program, in which lay community members were trained in the key aspects of advance care planning. Their role as ‘health navigators’ required them to cover ‘First Steps’ facilitation within the Respecting Choices program, in a number of U.S. cancer centres. This involved the navigators being competent to communicate the concept of advance care planning, assist patients in exploring personal values, identifying substitute decision-makers and communicating preferences for end of life care. The navigators completed six online modules and a one-day Respecting Choices certification course.
The navigators reported increased confidence and preparedness to undertake advance care planning discussions following the training. The fifty navigators initiated over 1000 advance care planning discussions over an eighteen month period. There were however differences between sites in the number of discussions undertaken and the navigators’ perceptions of being supported in their role. Around a quarter of the patients approached declined the discussion, and navigators identified that being introduced to patients by the medical team facilitated engagement. Follow up analysis of over 2000 deceased patients indicated that among those who had initiated advance care planning discussions with the navigators, there was a lower rate of hospitalization, and a trend towards lower ED use in the final 30 days of life.
The authors concluded that lay community members can be effectively trained in the key aspects of introducing ‘First Steps’ advance care planning to patients, with outcomes similar to other studies employing professional facilitators. The navigators were often able to spend greater amounts of time explaining advance care planning than health professionals. They also noted that navigators were recruited from within their local communities, and this may have contributed to the higher than usual acceptance of the program by patients.
With the growth in local community-led initiatives such as the Groundswell Project, and Death Cafes, it is timely to remember the role that appropriately trained community members might have in contributing to awareness, discussion and planning for care at the end of life. At one level, this can be seen as the community filling an important gap in the provision of health service delivery. From another perspective, one might question whether such resources should instead be committed by governments and health services, as part of ‘core business’. The possibility that lay community members might in fact garner greater engagement with patients in advance care planning discussions is intriguing, and could perhaps be researched further in the Australian context.
What are your thoughts? Are you aware of similar programs in your local area? How can we continue to develop community engagement in advance care planning?