Models of Relational Medical Decision-Making: Caregivers and Advanced Life-Sustaining Treatment

Health care faces a rising population of patients with reliance on advanced technologies to sustain life, such as ventricular assist devices. Caregivers are so essential to the success of the technology and patient well-being that the establishment of a reliable caregiver outside of the hospital is standardly required before these technologies are offered. Making the choice to engage in the relationships of care required by the use of advanced life-sustaining technologies (ALSTs) 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 focuses on patients alone. Research has repeatedly recommended a more just recognition of the care work in the context of ALST, but few models for involving caregivers alongside patients in shared decision-making exist. We offer a taxonomy of possible models for recognizing the impact and value of care labor in medical decision-making about ALSTs. 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.