Strategies to Support Surrogate Decision Makers of Patients With Chronic Critical Illness

Family Caregivers’ Experiences With Health Care Workers in the Care of Older Adults With Activity Limitations

“…First, prior studies have been largely anecdotal or specific to acute-care settings and may, therefore, not generalize to the experiences of family caregivers in routine care. Second, the challenges that have been reported may be less due to interpersonal interactions with individual health care workers than systemwide deficiencies, such as fragmented care, barriers to appropriate information access about the patient’s health or treatments, or issues specific to surrogate decision-making, such as knowledge gaps relating to patient treatment goals and wishes . Third, our study focuses on the experiences of caregivers who spoke or emailed with health care workers in the prior year and excludes perspectives of the more than half of caregivers who did not interact with health care professionals, some of whom may have experienced difficulties accessing care or who may purposefully avoid seeking out older adults’ health care workers because of prior experiences.…”

“…[10][11][12] Available evidence-largely anecdotal and setting specific-has described interactions between family and unpaid caregivers and health care workers as being tense or adversarial. 11,13 Although the communication challenges of surrogate decision-makers are well documented, [14][15][16][17] little is known about the experiences of family and unpaid caregivers during routine interactions with older adults' health care workers. Having a better understanding of caregivers' experiences during interactions with older adults' health care workers is especially timely given the growing interest in the contribution of social risk to outcomes of care.…”

Bereavement care and research in the intensive care unit: Opportunities and challenges

“…Uncertainty remains about the best way to intervene to support bereaved family members after the loss of a loved one in the ICU and to measure the impact of these interventions. To date, two approaches seem necessary: (a) a qualitative approach that enables us to better understand not only family members' experience but also implementation successes and challenges and (b) a step‐by‐step approach starting with pilot trials of interventions (systematically including a qualitative approach) in order to improve the interventions and/or to focus on those who seem adapted and promising in multicentre trials …”

The Theory and Practice of Surrogate Decision‐Making

“…10 Reality Confronts Theory D espite these challenges, one might continue to support reliance on patient-designated and next-of-kin surrogates on the grounds that patients want those they designate, or their family, to make treatment decisions for them. Against this assumption, a survey of patients found that almost one in three wanted their doctors to make decisions for them in the event of incapacity.…”

“…Steps to improve surrogates' predictive accuracy-having in-depth conversations about the patient's preferences and values and prognosis-may increase surrogate burden by emphasizing how sick the patient is and highlighting family uncertainty over which option the patient would have chosen. 10 Reality Confronts Theory D espite these challenges, one might continue to support reliance on patient-designated and next-of-kin surrogates on the grounds that patients want those they designate, or their family, to make treatment decisions for them. Against this assumption, a survey of patients found that almost one in three wanted their doctors to make decisions for them in the event of incapacity.…”