Relational Models of Medical Decision-Making

Aaron Wightman – University of Washington School of Medicine and Seattle Children's Research Institute

Abstract: Healthcare faces a rising population of patients with chronic incurable, but treatable conditions who rely on advanced life sustaining technologies (ALST), such as ventricular assist devices. These technologies depend on significant caregiver labor. Caregivers are so essential to the success of ALST and patient wellbeing that the establishment of a reliable caregiver outside of the hospital is standardly required before ALST are offered. Patients and caregivers alike face substantial benefits and burdens from their agreement to pursue ALST. Choosing to engage in the relationships of care required by ALST is a significant decision, one that is often taken up out of necessity but also in the context of a loving and caring relationship. However, the value of caregivers, as well as the benefits and burdens of their care labor, can easily be neglected in a decision-making process that centers patients’ perspectives, values, and choices. Research has repeatedly recommended a more just recognition of caregivers and care work in the context of ALST, but few models for centering caregivers alongside patients in shared decision making exist. As one means of recognizing the value of caregivers—as well as their marginalization, exploitation and the unjust distribution of their labor—we offer a taxonomy of four relational models of medical decision-making that center caregivers alongside patients by incorporating the value of caregivers and caring relationships. Ultimately, we recommend a model grounded in care ethics—the care-centered model—because it recognizes and values both the caregiving relationship and the individuals involved.

Keywords: relational medical decision-making, care ethics, caregivers and care labor