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

Abstract

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods 166 patients (41% with ALS and 59% with gastrointestinal cancers) and their surrogates at 2 university medical centers were randomized to an intensive nurse-directed discussion of the end of life Decision Control Preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL); 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, i.e., a balance of their own wishes and what the surrogate thinks best (Adjusted odds compared with baseline for patients = 1.78, p = .04; Adjusted odds for surrogates = 2.05, p = .03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (p = 0.08) while CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, p = .28). Stress levels decreased for TAILORED surrogates (Impact of Events Scale = 23.1±14.6 baseline, 20.8±15.3 f/u, p= 0.046), but not for CONTROL (p = .85), and post-intervention stress was lower for TAILORED than CONTROL (p = .04). Surrogate confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5±6.5 to 14.7±8.1 for TAILORED (p <.01) while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, p = .03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

A Systematic Review of Clinical Interventions Facilitating End-of-Life Communication Between Patients and Family Caregivers

“…Participants were recruited at hospital-based outpatient clinics, 27,29,31,33 a surgery clinic 26 dialysis clinics, 30,28 and medical centers. 33,32 Regarding the timing of the interventions, 3 studies focused on interventions for patients near death by limiting participants to patients having a high comorbidity score 30 or a diagnosis of stage III or IV cancer. 31,32 In 6 studies, the intervention was delivered in the same clinical settings where participants were recruited, 26 -29,30,32 whereas in 2 studies, it was delivered via home visits 33 or videoconferences.…”

“…The interventions were conducted using trained facilitators. Excluding 2 studies 27,29 that did not specify the health-care profession of trained facilitators, most interventions (62.5%) were conducted by trained nurses, 28,26,30,32,33 and 1 (12.5%) was delivered by trained social workers. 31 The frequency and duration of intervention sessions varied, ranging from 1 to 6 sessions (mean = 2.5 sessions) delivered weekly or biweekly and lasting from 20 to 90 minutes.…”

“…A scenario selection approach, which involves selecting preferred EOL care options under certain conditions described in the scenario, was used during more than 1 session in 6 studies 26 -29,30,33 to clarify the values and EOL care preferences of patients and family caregivers. In 1 study, 32 the researchers called participants 4 weeks postintervention to remind them of the intervention content and to encourage them to talk about their EOL care preferences and review handouts; this call could be considered a booster session. With respect to control conditions, 6 of 8 studies provided written information about advance directives 26,28 -30,32,33 and addressed individual questions from dyads either directly or through referrals to HCPs not involved in the research; the 2 remaining studies provided patients and families with general health promotion information.…”

Pain Management in a Terminally Ill Patient with a Surrogate Decision-maker: A Challenge

“…This negotiation should begin at the earliest time possible, as it will help to develop the bond between the patient and the medical team [14]. Studies have shown that making decisions regarding a patient’s management is very stressful for the healthcare proxy [15]. During these stressful times, the decision-making process is compromised.…”

A Reflective Case Study in Family Medicine Advance Care Planning Conversations

“…15 A third found that conversations between terminally ill hospitalized patients and their surrogates which are actively facilitated by the health care team improve subsequent decision making. 16 Little has been written about how to conduct advance care planning conversations during routine office visits. 17,18 Based on these informative works, our own observations, and dialog with colleagues, we propose a family medicine-focused approach to advance care planning.…”