He Got His Last Wishes” – Next-of-Kin Ways of Knowing Patient’s End Of Life Preferences and Affirming Clinical Conformity

Wittich AR, Williams BR, Woodby LL, Bailey A, Burgio KL. He Got His Last Wishes” – Next-of-Kin Ways of Knowing Patient’s End Of Life Preferences and Affirming Clinical Conformity. Poster session presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; 2012 Mar 7; Denver, CO.

Related HSR&D Project(s)

• IIR 03-126 – Intervention to Improve Care at Life's End in VA Medical Centers

Background Participation in end-of-life (EOL) treatment decisions is an emotionally challenging endeavor for family members. The ways by which next-of-kin (NOK) come to know their loved one's EOL wishes and whether those wishes were carried out has not been delineated. Given the debatable integrity of substituted judgment and the expeditious nature of clinical decision-making, exploring next-of-kin's' ways of knowing informs the discourse on the process of surrogate's decision-making. Methods In 2005-2010, we conducted in-depth interviews with 78 next-of-kin of deceased veterans in 6 VA Medical Centers in the Southeast U.S. We used content analysis to explore processes facilitating acquisition of knowledge regarding patient preferences. Results Next-of-kin were predominately female (78%) and white (60%). A majority (85%) next-of-kin employed more than one way of knowing. 82% reported patients' preferences were honored. Ways of knowing and affirming included informal communication between NOK and patient (76%), awareness of patient's documented preferences (59%), EOL-related communication from physician (72%), active participation in the EOL process (e.g., NOK requests to remove life support; initiate comfort care) (19%), and observation of EOL procedures and/or comfort care activities by physicians and clinical staff (56%). Although next-of-kin accounts were rich in patient characterization, NOK rarely relied solely on knowing the patient and their values as the basis for substituted judgment. Conclusions NOKs' draw upon varied ways of knowing in the process of 1) acquiring an awareness of patients' preferences, 2) assuring personal fidelity to the patients' desires, and 3) affirming clinical adherence to patients' wishes. This dynamic process integrates sensory, interpersonal, and socially structured components. Even in cases where EOL preferences were clearly documented or expressed, most NOKs' utilize other ways of knowing when asked to make decisions using substituted judgment. Implications for research policy or practice Future research should explore clinicians' ways of knowing patient preferences and its implications for conflict resolution in cases involving contested knowledge.