Do Older Adults Know Their Spouses' End-of-Life Treatment Preferences?

Abstract

When terminally ill patients become mentally incapacitated, the patient's surrogate often makes treatment decisions in collaboration with health care providers. We examine how surrogates' errors in reporting their spouse's preferences are affected by their gender, status as durable power of attorney for health care (DPAHC), whether the surrogate and spouse held discussions about end-of-life preferences, and the spouse's health status. We apply structural equation models to data from 2,750 married couples in their mid 60s who participated in the 2004 wave of the Wisconsin Longitudinal Study. Surrogates reported their spouse's preferences incorrectly 13 and 26 percent of the time in end-of-life scenarios involving cognitive impairment and physical pain, respectively. Surrogates projected their own preferences onto the spouse. Similar patterns emerged regardless of surrogate gender, surrogate status as DPAHC, marital discussions about end-of-life, or spousal health status. We discuss implications for the process of surrogate decision-making and for future research.As recently as 1960, nearly all physicians were opposed to telling their patients that they had terminal cancer, because they believed that the knowledge would have shattering psychological effects (Oken 1961). Subsequent psychosocial research showed that the awareness that one is dying does not emotionally harm a patient (Kübler-Ross 1969). Physician attitudes evolved such that the standard for care is now full disclosure and collaboration among patients, health care providers, and surrogate decision-makers in cases where the patient is unable to convey his or her own treatment preferences (Brody 1997;Novack et al. 1979;Snyder and Leffler 2005). Changes in physician attitudes have occurred alongside policy changes: In 1990, Congress passed the Patient Self-Determination Act (PSDA) to ensure that dying people have a greater say in their care. Under this law, federally funded health care providers are required to give patients information that helps them to execute a living will and to legally appoint a surrogate, known as a durable power of attorney for health care (DPAHC), to oversee their care in the event of decisional incapacitation.A concern of patients and health care providers is that surrogates accurately convey the patient's wishes. An effective surrogate, according to bioethicists, is someone who can apply the standard of substituted judgment (President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1983). Substituted judgment occurs when the surrogate makes the medical decision that the patient would have made if he or she (Shalowitz, Garrett-Mayer, and Wendler 2006). Surrogates often presume (erroneously) that the patient's preferences are identical to their own: Surrogates' own preferences account for more of the variance in their decisions than do the patients' actual preferences (Bar-Tal, Barnoy, and Zisser 2005;Fagerlin et al. 2001;Pruchno et al. 2005). Study AimsOur primary goal ...

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