Honoring Patient Care Preferences: Surrogates Speak

Purpose: This study reports on perceptions of health care surrogates after making a life-sustaining treatment decision for an incapacitated patient. As surrogates make 70-90% of ICU/CCU treatment decisions (Mcgee, 2000; Prendergast & Luce, 1997), surrogate-focused services, invaluable in end-of-life care, will exponentially increase as Americans live longer and experience higher rates of dementia- and debilitating-disease diagnoses (The President's Council on Bioethics, 2005). Although surrogates rely on patient and physician communications to guide decisions (Limmerick, 2007; Torke, Alexander, Lantos, & Siegler, 2007), we know little about their perceptions of what is valuable or important during the decision-making process. Method: Adults active in the surrogate role (n = 59; Health Care Advance Directives, 2010) in hospitals, hospices, and service organizations in Central Florida responded to a qualitative survey item, “Is there anything else you feel we should know about your surrogate experience?”, part of a large study detailed elsewhere (citation withheld to facilitate blind review). The predominantly white (88%) female (86%) sample made treatment decisions that began (11), did not begin (31), or withdrew treatment (17) on CPR (45%), ventilation (27%), tube feedings (18%), or dialysis (10). Two coders analyzed written responses using a grounded theory approach, interactively analyzing data with constant comparisons (Gingerish et al., 1999) combined with content analysis to support categorical discovery in the data and draw forth relationships shown within data clusters (Suddaby, 2006). Results: The analysis yielded four conceptual themes: (a) emotional impact on surrogates following the decision-making process; (b) difficulty of watching loved ones' health deteriorate; (c) importance of having patients' written/verbal instructions, and (d) use of spirituality as a means of coping with the surrogate experience. Participants experienced painfully intense, sad feelings during decision-making, and some were unprepared for their role. Reassurance in knowing advanced patient care preferences made decision-making easier. Watching a loved one's health deteriorate over time, when complicated by multiple, extended treatment modalities, became particularly difficult. Spiritual approaches, including religious teaching, prayer, or positive thinking, enabled surrogates to endure a very difficult experience. Conclusions and Implications: Study results suggest social work assessment of surrogates occur early during patient care, prior to or during ICU/CCU admission. Clarifying and documenting surrogate knowledge and understanding of patient treatment preferences, especially if patients are communicative, can potentially moderate surrogates' post-decision stress. Educating surrogates about patient trajectory of illness, at a level of their readiness to comprehend, can support surrogates in coping with patient decline. Early assessment can assure surrogate access to identified sources of spiritual support prior to, during, and following decision-making. Given that one-fifth of the current Medicare budget pays for patient care during the last two months of life (Wiatrowski, 2011), social work implementation of empirically-based services that meet current surrogate needs crafts effective solutions to shape current U.S. health care policy, for by delivering services to today's surrogates, social workers can prepare to service the rising tide of future surrogate decision-makers slated to determine health care utilization by their decisions.