Table 4 Proposed recommendations for engaging patients and family caregivers in end-of-life and palliative care research

1. Give patients and families the opportunity to participate as research partners – even very near life’s end - and do so sensitively and with compassion. For example, patients and caregivers appear willing to be asked to partner, even close to life’s final days – potentially providing crucial, untapped insights into the design of patient- and family-centered palliative care.

2. Proactively minimize the burdens of patients & families participating as research partners by being thoughtful about when, where and how engagement activities occur. For example, to minimize burdens associated with serious illness, investigators can propose short feedback sessions at times and places convenient to patients (e.g., feedback sessions at the infusion center, rather than a traditional evening board meeting).

3. Take steps to increase diversity – broadly construed – in engagement partners. Diversity comes in different forms; some patients and families reported a need to engage diverse races, ethnicities, and even more individuals who identify as men (recognizing that most family caregivers identify as women).

4. Be prepared to manage “relationship ethics” as a result of the deep bonds that can form over time with partners. Some issues that arise – such as blurred boundaries between investigators and patient/family partners or even the rare need to end a research partnership – do not fall neatly into traditional research ethics principles (and these issues require further research).