Sulmasy, D.P., Hughes, M.T., Yenokyan, G., Kub, J., Terry, P.B., Astrow, A.B., . . . Nolan, M.T. (2017). The trial of ascertaining individual preferences for loved ones' role in end-of-life decisions (TAILORED) study: A randomized controlled trial to improve surrogate decision making. Journal of Pain and Symptom Management, 54, 455–465.
To test the effectiveness of a nurse-facilitated discussion intervention between patients and their caregivers (surrogates) about the role patients would prefer their surrogates play when they are unable to make decisions
A nurse-led intervention administered by a nurse to dyads of patients with gastrointestinal (GI) cancer and their caregivers (CGs). The nurse compared a patient and a CG responses on a decisional control preferences (DCP) tool and facilitated a discussion between the two about the role a patient would like the CG to play when a patient becomes unable to make decisions. Patients and their surrogates received a Patient-Loved One Decision Making Handout that reflected a patient’s DCP; they also received the advanced directive information. A follow-up call was made at four weeks in which the nurse encouraged them to discuss the patients’ preferences for involving the surrogate in healthcare decisions. In addition, they were reminded to review the handout. Patients and CGs were surveyed at baseline and at eight (± 2) weeks postintervention. The trial is known as The Trial of Ascertaining Individual Preferences for Loved Ones’ Role in End-of-Life Decisions (TAILORED)
Randomized controlled trial
Interventions focusing on improving shared decision-making process (decision control preferences) between patients and their surrogates have favorable effects on surrogate stress and satisfaction. Patients prefer shared decision making over pure substitutive judgment. Although perceived burden increased among the treatment group, they were less stressed and more satisfied. This may suggest that increased burden may not always indicate general deterioration.
Facilitating discussions between patients and caregivers/surrogates about decision-making preferences promotes improvement in certain patients’ and surrogates’ outcomes. These discussions supported with handout are feasible interventions that can be administered by nurses.