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

JGIM EDITORIAL AND COMMENT Family Caregivers and Physicians Caring for Cancer Patients: On-the-Job Training for All Paul R Duberstein, PhD Departments of Psychiatry and Family Medicine, University of Rochester Medical Center, Rochester, NY, USA. J Gen Intern Med 29(9):1215–7 DOI: 10.1007/s11606-014-2936-4 © Society of General Internal Medicine 2014 am writing from the bedside of a family member who I 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 Published online June 27, 2014 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 metaanalysis 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. PHYSICIANS AND CAREGIVING RESEARCH After a quick internet search, I was able to discern that a physician served as first author on only one of the 27 articles included in the review.2 Given that physicians spend more time than social scientists interacting with cancer patients and their family caregivers, this authorship pattern might be viewed as a curiosity, but it is not a historical accident. Caregiving is an ideal topic for scholars interested in the effects of stressors and changing life circumstances on wellbeing and health. Social scientists and nurses have dominated caregiving intervention research and the broader caregiving literature, uncovering caregiving’s upsides (e.g., benefit-finding), along with its darker and deadly consequences (e.g., elder abuse, domestic violence, murder-suicide7). If this authorship pattern is interpreted to suggest that physicians have largely avoided the topic of caregiving, one must wonder why. The reason, I think, is culture. Informed by particular models of disease, payment, and science,8 medical 1215 1216 Duberstein: Family Caregivers and Physicians Caring for Cancer Patients culture has historically placed disproportionate emphasis on biomedical cures for disease, while de-emphasizing the effects of disease and its (over) treatment on patients and families.9 Medical culture reinforces the physician’s interest in pathophysiology more than it reinforces interest in psychosocial processes.8 FROM CURE IN THE CLINIC TO CARE AT HOME: CHANGING LABOR PATTERNS OF PATIENTS, CAREGIVERS AND PHYSICIANS May et al.9 argue that the ongoing transition from “cure in the clinic to care at home” has had “the paradoxical effect of adding …to the work of being sick” (pg. 486). Historically, family caregivers have provided mainly physical labor, assisting patients with activities of daily living, such as bathing, dressing, feeding, and toileting. Increasingly, caregivers provide cognitive labor. Not only do these de facto members of the care team monitor symptoms, dispense medications, and accompany patients to medical appointments, but they also handle medical devices historically restricted to licensed clinicians. When the disease can no longer be kept at bay, and patients are unable to speak for themselves, physicians will ask caregivers about patients’ preferences for life-prolonging treatments. Some caregivers know these preferences, but some can only guess. Guesswork is hard work.10 May et al.9 focused on the increased cognitive load on patients and caregivers, but the physician’s cognitive burden has also increased. For the physician, the increased need to interact with caregivers about home care coincides with mounting pressure to shorten hospital stays, decrease rates of re-hospitalization, minimize the burden of treatments,9 maximize clinical outcomes, and increase patient satisfaction ratings. Just as caregivers are now providing a form of cognitive and emotional labor unknown to caregivers of previous generations, the cognitive and emotional11 demands on today’s physicians would be hardly recognizable to their forbearers. Burnout among physicians who care for seriously ill patients12 and burden among family caregivers are both rooted, in part, in the type of work they have been asked, or dema (...truncated)