A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones

Abstract

We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors.

Examining the context and helpfulness of family companion contributions to older adults’ primary care visits

“…[14, 25] Although family involvement in medical decision-making is commonly desired and even expected by older adults [4, 5, 26], ambiguity in family companions’ understanding of patient perspectives and communication preferences[9, 12, 17, 20] may challenge the ability of well-intended and motivated family members to support patients as they desire. To this end, it is notable that although family companions’ communication behaviors were highly associated with how patients managed their health, communication behaviors did not vary with respect to patients’ preferences for involving family in medical decision-making.…”

“…[6] Less effort has been directed at understanding and improving the capacity of family companions to productively engage in communication during face-to-face medical visits. [17, 29] We are unaware of studies other than our own [21] that have sought to strengthen family involvement by clarifying patients’ desired communication assistance. Strategies to elicit discussion between patients and families regarding patients’ treatment goals, priorities, and preferences merits consideration in light of evidence that patient-family agreement is generally low.…”

“…A better understanding of family companions’ involvement in older adults’ primary care visits is relevant to efforts to engage families in shared decision-making [4, 8, 17] and in care. [18, 19] A recent nationally representative study found that older adults’ decision-making preferences varied widely with respect to whether they managed their health independently or with the involvement of family.…”

Factors influencing patients’ receptiveness to evidence-based recommendations during the clinical encounter

“…Given the debate on the validity of substituted judgement [26] and the variability in how caregivers view their roles as surrogate decision-makers for elderly and disabled adults, additional research on how caregivers make medical decisions on behalf of others is necessary. There is some evidence already that c aregivers would benefit from decision support [27].…”

Shared Decision Making to Improve the Emergency Care of Older Adults: A Research Agenda

“…7,8 For patients who lack capacity to make decisions, surrogate decision-makers may not be present during the ED visit or may not be prepared to make decisions on behalf of patients. 9 Finally, and not unique to the care of older patients, some emergency physicians lack the necessary skills to conduct SDM [10][11][12] and may be hesitant to accurately characterize prognosis, especially in the context of life-threatening illness. 13 Collectively, these characteristics of emergency care for older adults shape both the potential and the challenge faced by emergency physicians and clinical researchers who hope to bring SDM to the bedside of our older patients.…”