Preferences for Surrogate Decision Makers, Informal Communication, and Advance Directives Among Community-Dwelling Elders

Hopp, Faith

doi:10.1093/geront/40.4.449

Cited by 155 publications

(178 citation statements)

References 21 publications

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“…We hypothesized that acceptability outcomes might differ by literacy and language because lower education and minority status have been associated with low advance directive completion rates (9,(22)(23)(24) In addition, prior to this study, literacy and language appropriate advance directives with culturally diverse, text-enhancing graphics were not available. Therefore, we hypothesized that the greatest gains in the acceptability outcomes may be found in Spanish-speakers and subjects with limited literacy as these subjects may not have been previously exposed to an advance directive they could read or understand.…”

Section: Methodsmentioning

confidence: 99%

“…We hypothesized that participants would rate the redesigned advance directive easier to use and understand, more useful for personal treatment decisions, and more valuable for care planning. Because the hospital in which the redesigned advance directive was to be implemented has a large proportion of Spanish-speaking patients and patients with limited literacy, (20,21) and because engagement in advance care planning has been shown to be lower in minorities and subjects with lower education, (9,(22)(23)(24) we also explored whether the effects of the redesigned form were greater among participants with limited literacy and among Spanish-speakers.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

An advance directive redesigned to meet the literacy level of most adults: A randomized trial

Sudore

Landefeld

Barnes

et al. 2007

Patient Education and Counseling

123

183

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Objective-To determine whether an advance directive redesigned to meet most adults' literacy needs (5 th grade reading level with graphics) was more useful for advance care planning than a standard form (>12 th grade level).Methods-We enrolled 205 English and Spanish-speaking patients, aged ≥ 50 years from an urban, general medicine clinic. We randomized participants to review either form. Main outcomes included acceptability and usefulness in advance care planning. Participants then reviewed the alternate form; we assessed form preference and six-month completion rates.Results-40% of enrolled participants had limited literacy. Compared to the standard form, the redesigned form was rated higher for acceptability and usefulness in care planning, P≤0.03, particularly for limited literacy participants (P for interaction ≤ 0.07). The redesigned form was preferred by 73% of participants. More participants randomized to the redesigned form completed an advance directive at six months (19% vs. 8%, P=0.03); of these, 95% completed the redesigned form.Conclusions-The redesigned advance directive was rated more acceptable and useful for advance care planning and was preferred over a standard form. It also resulted in higher six month completion rates.Practice Implications-An advance directive redesigned to meet most adults' literacy needs may better enable patients to engage in advance care planning.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

An advance directive redesigned to meet the literacy level of most adults: A randomized trial

Sudore

Landefeld

Barnes

et al. 2007

Patient Education and Counseling

123

183

View full text Add to dashboard Cite

show abstract

“…The majority of married older adults who name a DPAHC name their spouse Khodyakov 2007a, 2007b;Hopp 2000). When individuals do not legally appoint a surrogate, the appointment may occur by default.…”

Section: Study Aimsmentioning

confidence: 99%

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

Moorman¹,

Hauser²,

Carr³

2009

ICPSR Data Holdings

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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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“…Hopp (2000) analysed the Asset and Health Dynamics Among the Oldest Old (AHEAD) survey based on adults aged 70 and over. He found that white (as opposed to African American) participants were more likely to have produced advance directives.…”

Section: Nationality and Ethnic Background As Factors Affecting Surromentioning

confidence: 99%

“…Given that people who provide advance directives are more likely to receive the care that they prefer (Silveira et al, 2010), this implies that surrogate decision accuracy can be indirectly affected by ethnic background. Hopp's (2000) study could be extended by studying other ethnic groups and by using features other than ethnicity as a basis for comparison. For example, it would be interesting to compare nationalities or cultural groups that vary in terms of individualism and collectivism as these factors are likely to affect the way in which surrogates relate to beneficiaries (Tower, Kelly, & Richards, 1997;Zha, Walczyk, Griffith-Rose, Tobacyk, & Walczyk, 2006).…”

Section: Nationality and Ethnic Background As Factors Affecting Surromentioning

confidence: 99%

Incapacitated Patients’ Wellbeing: Surrogate Decision Making

Kaplunov¹,

Harvey²

2017

The European Proceedings of Social and Behavioural Sciences

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Patients' wellbeing often depends on making the right decision with regards to their healthcare treatment and other decisions relating to their health care or finances in terms of their end of life. If they are unable to make decisions for themselves, other people have to make those decisions on their behalf. This important task is described in literature as surrogate decision making. We survey and illustrate several important issues that are associated with surrogate decision making and provide an overview of the factors that have been found to affect its accuracy. Selection of a surrogate decision maker has been found to be affected by the beneficiary's nationality, risk attitudes, and personality and by specific qualities of the surrogate. Decision accuracy (as indexed by matching between choices for self or relative) has been found to be affected by factors such as nationality, surrogate qualities, surrogate person choice, risk attitudes and personality.

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Preferences for Surrogate Decision Makers, Informal Communication, and Advance Directives Among Community-Dwelling Elders

Cited by 155 publications

References 21 publications

An advance directive redesigned to meet the literacy level of most adults: A randomized trial

An advance directive redesigned to meet the literacy level of most adults: A randomized trial

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

Incapacitated Patients’ Wellbeing: Surrogate Decision Making

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