Enhanced patient-family health care decision making is essential to improving the overall quality of end-of-life care (NIH State of the Science Conference Statement on Improving End-of-Life Care, 2004). Although most terminally ill patients desire shared family decision making, few family members are prepared for this and many report high levels of distress, and even the inability to make such decisions (Nolan, et al., 2005). Factors positively influencing the surrogates are: 1) previous experience with surrogate decision making, 2) knowing the patient's preferences, and 3) receiving positive reinforcement about decision making. The last two are amenable to change in """"""""Trial of Ascertaining Individual preferences for Loved Ones'Role in End-of-life Decisions"""""""" (the """"""""TAILORED"""""""" study). The TAILORED intervention is a simple clinic- based protocol involving an assessment of the confidence (self-efficacy) of family members for making health care decisions with or for a terminally ill loved one. Clinicians then tailor their guidance to patients and families about issues to discuss at home to better prepare family members for the desired decision-making role. This randomized clinical trial will include 132 patient-family dyads from two diagnostic groups: a group expected to retain (amyotrophic lateral sclerosis) or lose decisional capacity (advanced gastro-intestinal malignancy). A nurse will deliver the TAILORED intervention in the clinic at baseline and will call the family member in 4- weeks to encourage ongoing patient-family discussion. Outcomes will be assessed at 8-weeks. A subgroup of family members whose loved one has died will be interviewed in-depth about their end-of-life decision making and the impact of the TAILORED Intervention.
Aim 1 : To test the effect of the TAILORED intervention on family decision-making self-efficacy at 8 weeks both with respect to the patient's present situation and in a hypothetical situation in which the patient lacks decision-making capacity.
Aim 2 : To test the effect of the TAILORED intervention on family psychological outcomes (depression, caregiver burden, decision making distress).
Aim 3 : To test the effect of the TAILORED intervention on patient and family satisfaction with family decision-making involvement.
Aim 4 : To explore family decision-making self-efficacy and perceptions of the TAILORED intervention.

Public Health Relevance

Although most terminally ill patients prefer to share health care decision making with family and want family to make decisions for them if they are too ill to do so, few family members are prepared for this role and many report high levels of distress and even the inability to make such decisions. """"""""Trial of Ascertaining Individual preferences for Loved Ones'Role in End-of-life Decisions"""""""" (the """"""""TAILORED"""""""" study) tests a simple clinic-based protocol that allows clinicians to assess the confidence (self-efficacy) of family members for making health care decisions with or for a terminally ill loved one. Clinicians then tailor their guidance to patients and families about what issues to discuss to better prepare family members for the decision making role desired by the patient.

Agency
National Institute of Health (NIH)
Institute
National Institute of Nursing Research (NINR)
Type
Research Project (R01)
Project #
3R01NR010733-03S1
Application #
8328590
Study Section
Nursing Science: Adults and Older Adults Study Section (NSAA)
Program Officer
Aziz, Noreen M
Project Start
2009-08-07
Project End
2014-06-30
Budget Start
2011-09-19
Budget End
2012-06-30
Support Year
3
Fiscal Year
2011
Total Cost
$161,987
Indirect Cost
Name
Johns Hopkins University
Department
Type
Schools of Nursing
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21218
Kim, Kyounghae; Heinze, Katherine; Xu, Jiayun et al. (2018) Theories of Health Care Decision Making at the End of Life: A Meta-Ethnography. West J Nurs Res 40:1861-1884
Ho, Grace W K; Skaggs, Lauren; Yenokyan, Gayane et al. (2017) Patient and caregiver characteristics related to completion of advance directives in terminally ill patients. Palliat Support Care 15:12-19
Sulmasy, Daniel P; Hughes, Mark T; Yenokyan, Gayane et al. (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. J Pain Symptom Manage 54:455-465
Xu, Jiayun; Nolan, Marie T; Heinze, Katherine et al. (2015) Symptom frequency, severity, and quality of life among persons with three disease trajectories: cancer, ALS, and CHF. Appl Nurs Res 28:311-5
Abshire, Martha; Xu, Jiayun; Dennison Himmelfarb, Cheryl et al. (2015) Symptoms and fear in heart failure patients approaching end of life: a mixed methods study. J Clin Nurs 24:3215-23
Sharma, Rashmi K; Hughes, Mark T; Nolan, Marie T et al. (2011) Family understanding of seriously-ill patient preferences for family involvement in healthcare decision making. J Gen Intern Med 26:881-6
Nolan, Marie T; Hughes, Mark T; Kub, Joan et al. (2009) Development and validation of the Family Decision-Making Self-Efficacy Scale. Palliat Support Care 7:315-21