Not all patients want to participate in decision making

Levinson, Wendy; Kao, Audiey; Kuby, Alma M.; Thisted, Ronald A.

doi:10.1111/j.1525-1497.2005.04101.x

Cited by 963 publications

(871 citation statements)

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“…Prior studies have emphasized age-based differences in decision-making preferences by comparing older adults with working-age adults, 10,11 or by focusing on targeted subgroups of older adults with low-literacy or poor health. 12,15 Our results corroborate findings from a recent systematic review indicating a trend toward greater patient preferences for active participation in health care decision-making, 28 and qualitative studies reporting substantial diversity in older adults' decisionmaking preferences.…”

Section: Discussionmentioning

confidence: 99%

“…To assess preferences for health care decision-making, we devised questions with attention to existing measures and recent conceptual work indicating the importance of doctors, as well as family and close friends, as elements of informed decision-making. 10,20,21 We separately examined older adults' preferences for participating in health care decisions with doctors and family and close friends using the following categories: Bmaking decisions independently, with or without advice^, Bshare decisions^and Bleave decisions up to them.^Finally, we developed questions to assess older adults' perspectives on their experiences managing their health, drawing on prior work to articulate disease-specific treatment burden. 6,7,[22][23][24] We constructed a summary measure that identified participants who reported that one or more of four individual experiences relating to treatment burden occur Bsometimes^or Boften.Ĉ ovariates We examine older adults' age, gender, educational attainment, self-rated health, numbers of chronic medical conditions, selfreported hospitalization in the prior year, and sensory impairment.…”

Section: Study Outcomesmentioning

confidence: 99%

“…[5][6][7] Age-related changes in sensory, cognitive, and physical function may prompt some older adults to rely on or choose to involve family members or close friends in managing their health. 8,9 The existing literature generally indicates that older adults prefer a passive role in health care decision-making [10][11][12] and portrays older adults as burdened by care. 13,14 However, prior studies have typically emphasized age-related differences, 10,11 or focused on targeted subgroups of older adults with low-literacy, poor health, or specific conditions.…”

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confidence: 99%

“…8,9 The existing literature generally indicates that older adults prefer a passive role in health care decision-making [10][11][12] and portrays older adults as burdened by care. 13,14 However, prior studies have typically emphasized age-related differences, 10,11 or focused on targeted subgroups of older adults with low-literacy, poor health, or specific conditions. [12][13][14][15][16] Understanding what people view to be important and their experience of care is foundational in the measurement of person-centered and family-centered care.…”

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confidence: 99%

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A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

Wolff

Boyd

2015

J GEN INTERN MED

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BACKGROUND:Person-centered and family-centered care represents the pinnacle of health care quality, but delivering it is challenging, as is assessing whether it has occurred. Prior studies portray older adults as passive in health decisions and burdened by care-but emphasize age-based differences or focus on vulnerable subgroups. OBJECTIVES: We aimed to examine domains of person-centered and family-centered care among older adults and whether the social context in which older adults manage their health relates to preferences for participating in health decisions and experiences with care. DESIGN AND PARTICIPANTS: This was an observational study of a nationally representative survey of adults aged 65+ years, conducted in concert with the 2012 National Health and Aging Trends Study (n=2040). MAIN MEASURES: Approach to managing health (selfmanage, co-manage, delegate); preferences for making health care decisions with: (1) doctors, (2) family/close friends; and experiences with care pertaining to treatment burden were measured. KEY RESULTS: Approximately two-thirds of older adults self-manage (69.4 %) and one-third comanage (19.6 %) or delegate (11.0 %) health care activities. The majority prefer an independent or shared role when making health decisions with doctors (84.7 %) and family/close friends (95.9 %). Nearly four in ten older adults (37.9 %) experience treatment burden-that managing health care activities are sometimes or often hard for either them or their family/close friends, that health care activities get delayed or don't get done, or that they are cumulatively too much to do. Relative to older adults who self-manage, those who delegate health care activities are more likely to prefer to share or leave health decisions to doctors (aOR=1.79 (95 % CI, 1.37-2.33) and family/close friends (aOR=3.12 (95 % CI, 2.23-4.36), and are more likely to experience treatment burden (aOR= 2.37 (95 % CI, 1.61-3.47). CONCLUSIONS: Attaining person-centered and familycentered care will require strategies that respect diverse decision-making preferences, minimize treatment burden, and support the broader social context in which older adults manage their health.

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Section: Discussionmentioning

confidence: 99%

Section: Study Outcomesmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

Wolff

Boyd

2015

J GEN INTERN MED

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“…In particular, white men were over twice as likely to use either decision aid compared to nonwhite men, corroborating previous findings suggesting that African-American and other non-white men may be somewhat reluctant to engage in medical decision making. 21,22 This finding also reinforces the need for physicians and other clinicians to engage in culturally relevant shared decision making.…”

Section: Resultsmentioning

confidence: 59%

A Comparison of Web-Based Versus Print-Based Decision Aids for Prostate Cancer Screening: Participants’ Evaluation and Utilization

et al. 2014

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BACKGROUND: Patient decision aids facilitate informed decision making for medical tests and procedures that have uncertain benefits. OBJECTIVE: To describe participants' evaluation and utilization of print-based and web-based prostate cancer screening decision aids that were found to improve decisional outcomes in a prior randomized controlled trial. DESIGN: Men completed brief telephone interviews at baseline, one month, and 13 months post-randomization. PARTICIPANTS: Participants were primary care patients, 45-70 years old, who received the print-based (N=628) or web-based decision aid (N = 625) and completed the follow-up assessments. MAIN MEASURES:We assessed men's baseline preference for web-based or print-based materials, time spent using the decision aids, comprehension of the overall message, and ratings of the content. KEY RESULTS: Decision aid use was self-reported by 64.3 % (web) and 81.8 % (print) of participants. Significant predictors of decision aid use were race (white vs. non-white, OR=2.43, 95 % CI: 1.77, 3.35), higher education (OR=1.68, 95 % CI: 1.06, 2.70) and trial arm (print vs. web, OR=2.78, 95 % CI: 2.03, 3.83). Multivariable analyses indicated that web-arm participants were more likely to use the website when they preferred web-based materials (OR: 1.91, CI: 1.17, 3.12), whereas use of the print materials was not significantly impacted by a preference for print-based materials (OR: 0.69, CI: 0.38, 1.25). Comprehension of the decision aid message (i.e., screening is an individual decision) did not significantly differ between arms in adjusted analyses (print: 61.9 % and web: 68.2 %, p=0.42). CONCLUSIONS: Decision aid use was independently influenced by race, education, and the decision aid medium, findings consistent with the 'digital divide.' These results suggest that when it is not possible to provide this age cohort with their preferred decision aid medium, print materials will be more highly used than web-based materials. Although there are many advantages to web-based decision aids, providing an option for print-based decision aids should be considered.KEY WORDS: prostate cancer screening; decision aid; informed decision making; shared decision making.

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Sliding-Scale Shared Decision Making for Patients With Reduced Capacity

Lahey

Elwyn

2020

AMA Journal of Ethics

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Shared decision making honors patient autonomy, particularly for preference-sensitive care decisions. Shared decision making can be challenging, however, when patients have impaired decision-making capacity. Here, after presenting an illustrative case example, this paper proposes a capacity-adjusted "sliding scale" approach to shared decision making. CaseDr Q is an academic hepatologist meeting a new patient, Mr R, for newly diagnosed cirrhosis. The patient has clear signs of liver dysfunction and has already been admitted to the hospital previously for a gastrointestinal bleed related to esophageal varices. He also has chronic obstructive pulmonary disease, obesity, and poorly controlled type 2 diabetes mellitus.Dr Q and her student, Ms G, interview and examine Mr R together. They learn that Mr R did not complete high school and lives on what he calls "the wrong side of the tracks." He lives alone and drinks 4 beers daily. He thinks his brother might have had "liver problems," too.As the conversation unfolds, it becomes clear that Mr R does not know why he's in clinic today. "My doc said it was something about my liver, but…" He shrugs.Ms G and Dr Q teach Mr R about cirrhosis. They emphasize the importance of alcohol abstinence and start to explain that further workup is necessary-including, potentially, a liver biopsy. Their goal is to enter into shared decision making with Mr R about liver biopsy. Mr R holds up his hand midway through their explanation and says, "I'm not a detail guy, Doc. I trust you. You tell me what to do, and I'll do it." They talk more, and, ultimately, Dr Q asks, "Do you have any questions for me?" Mr R pauses for a second, starts to ask a question, and then tapers off. 1 Finally, he says, "Whatever you say, Doc. I'm in your hands."

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Not all patients want to participate in decision making

Cited by 963 publications

References 58 publications

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

A Comparison of Web-Based Versus Print-Based Decision Aids for Prostate Cancer Screening: Participants’ Evaluation and Utilization

Sliding-Scale Shared Decision Making for Patients With Reduced Capacity

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