Family Caregivers and Physicians Caring for Cancer Patients: On-the-Job Training for All

I am writing from the bedside of a family member who recently underwent pancreaticoduodenectomy. After participating in two brief training sessions and watching nurses do their jobs, I learned how to administer total parenteral nutrition, flush a pancreatic drain, and handle other caregiving tasks. I am not alone. More than 40 million Americans serve as unpaid caregivers for a family member who is 50 years of age or older. Given the psychological burdens of caregiving and the need for on-the-job training, family-directed interventions have been mounted.1 As Griffin et al.2 (this issue) note, an “implicit assumption” of these interventions is that “the patient will also benefit.” The authors do not unpack these assumptions, but the credibility of their argument, and its relevance for clinical practice and policy, require the identification of plausible mechanisms. There are at least three. First, interventions might improve communication and decision-making at the point-of-care, thereby, for example, decreasing patient exposure to treatments that do more harm than good. Such was the case in a study3 that was excluded from the review because it was conducted outside the United States. In that study, an intervention for family members of patients dying in intensive care units both decreased patient exposure to futile treatments and improved caregiver bereavement outcomes. Second, caregivers might be taught disease management skills (e.g., pain, nutrition) that directly benefit the patient. Third, intervention-induced improvements in caregiver quality of life (QOL) could be transmitted to the patient via psychological processes (e.g., empathy, conditioning, social learning) that are facilitated by commonalities (due to genetics, homophily or living in a shared environment) between patient and caregiver. By virtue of the same psychological processes that account for increased physical resemblance among older spouses4 and increased caregiver morbidity after exposure to patient suffering,5 patients might benefit from improved caregiver quality of life. Despite the presence of plausible mechanisms, the authors “found little evidence” that patients’ outcomes “were more effectively addressed by a family-involved intervention.” Nonetheless, they encourage more research on this topic. Observing that all but two of the 27 trials were of poor or fair quality, they call for increased methodological rigor. Rigor is needed, but so is greater stakeholder involvement in the research process. Community psychologists have long recognized that a project’s societal impact is proportional to the diversity of perspectives represented.6 Only recently has this principle earned the imprimatur of federal policy, with government agencies now requiring community-based participatory research and stakeholder involvement throughout the research process.6 As a caregiver, I can personally attest to the need for stakeholder involvement. Despite co-authoring a meta-analysis on caregiver interventions,1 I had seriously underestimated the skills and knowledge required for effective caregiving. Patients, caregivers, physicians, nurses and other members of care teams have an insider’s understanding of cancer care and its aftermath that is unavailable to researchers with no first-hand cancer experience.