Dataset Information

Defining Familial Interactions and Networks: An Exploratory Qualitative Study on Family Networks and Surrogate Decision-Making.

ABSTRACT: To characterize patient preferences for medical surrogate decision-makers in the ICU to capture the complexity of decision-making preferences and highlight potential conflicts between patients' preferences and clinicians' surrogate decision-maker identification in usual clinical practice.

Design

Prospective qualitative cross-sectional study.

Setting

Two ICUs in a quaternary referral center in the eastern United States.

Patients

Convenience sample of patients admitted to the ICU and their family members.

Intervention

None.

Measurements and main results

Twenty-six patient-family-clinician units were interviewed. Men were three times more likely than women to have a legally appointed decision-maker that matched their preferred decision-maker as expressed in the interview. Patients who were married or in a long-term relationship were the most consistent group of respondents, with 94% of them selecting their spouse or partner as the preferred decision-maker. The most common reasons for selecting a surrogate decision-maker were intangible themes such as feeling "known" by that person rather than having prior discussions about specific wishes or advance directives.

Conclusions

Asking about a patient's familial network and qualities they value in a surrogate decision-maker may aid ICU teams in honoring patients' wishes for surrogate decision-making. This may be an important supplement to accepted legal hierarchies for proxy decision-makers and advance directive documents. Further studies with larger sample sizes could be used to shed light on the nuances of familial and relationship networks of a more diverse population of respondents.

SUBMITTER: Harvey SV

PROVIDER: S-EPMC8323795 | biostudies-literature | 2021 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Defining Familial Interactions and Networks: An Exploratory Qualitative Study on Family Networks and Surrogate Decision-Making.

Harvey Sarah V SV Adenwala Adam Y AY Lane-Fall Meghan B MB

Critical care explorations 20210729 8

To characterize patient preferences for medical surrogate decision-makers in the ICU to capture the complexity of decision-making preferences and highlight potential conflicts between patients' preferences and clinicians' surrogate decision-maker identification in usual clinical practice.<h4>Design</h4>Prospective qualitative cross-sectional study.<h4>Setting</h4>Two ICUs in a quaternary referral center in the eastern United States.<h4>Patients</h4>Convenience sample of patients admitted to the ...[more]

PMID: 34345829

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Project description:Background/objectiveSurrogate decision makers for patients with intracerebral hemorrhage (ICH) are frequently asked to make difficult decisions on use of life-sustaining treatments. We explored ICH surrogate satisfaction with decision making and experience of decision regret using validated measures in a prospective multicenter study.MethodsCases of non-traumatic ICH were enrolled from three hospitals (September 2015-December 2016), and surrogate decision makers were invited to complete a self-administered survey. The primary outcome was the 10-item decision-making subscale of the Family Satisfaction in the Intensive Care Unit scale (FSICU-DM, range 0-100, higher is greater satisfaction), and the secondary outcome was the decision regret scale (range 0-100, higher is greater regret). Linear regression models were used to assess the association between satisfaction with decision making and pre-specified covariates using manual backward selection.ResultsA total of 73 surrogates were approached for participation (in person or mail), with 48 surrogates returning a completed survey (median surrogate age 60.5 years, 63% female, 77% white). Patients had a median age of 72.5, 54% were female, with a median admission Glasgow coma scale of 10, in-hospital mortality of 31%, and 56% with an in-hospital DNR order. Physicians commonly made treatment recommendation (> 50%) regarding brain surgery or transitions to comfort measures, but rarely made recommendations (< 20%) regarding DNR orders. Surrogate satisfaction with decision making was generally high (median FSICU-DM 85, IQR 57.5-95). Factors associated with higher satisfaction on multivariable analysis included greater use of shared decision making (P < 0.0001), younger patient age (p = 0.02), ICH score of 3 or higher (p = 0.03), and surrogate relationship (spouse vs. other, p = 0.02). Timing of DNR orders was not associated with satisfaction (P > 0.25). Decision regret scores were generally low (median 12.5, IQR 0-31.3).ConclusionsConsidering the severity and abruptness of ICH, it is reassuring that surrogate satisfaction with decision making was generally high and regret was generally low. However, more work is needed to define the appropriate outcome measures and optimal methods of recruitment for studies of surrogate decision makers of ICH patients.

Project description:BackgroundIn 2016 the UK Department of Health and Social Care published the results of a comprehensive review of efficiency in hospitals, identifying "unwarranted variation" in procurement (or purchasing) practices for materials, supplies and devices. Addressing this variation in materials and supplies procurement practice has been identified as particularly important for creating efficiencies in health service delivery. However, little is known about the behaviour and experiences of front-line individuals who make these procurement decisions, which has implications for the development of strategies to improve efficiency. The objective of this study is to improve understanding of the factors influencing procurement behaviour and decisions among requisitioners who use an internal electronic procurement portal for medical supplies and equipment, and identify areas where efficiency could be improved.MethodsQualitative semi-structured individual interview study, following approximately 70 h of exploratory observations on site. The study context was a large London National Health Service (NHS) healthcare provider (the Trust), where we focussed primarily on purchases managed by a large hospital. Participants were drawn from requisitioners from multiple directorates across the Trust (n = 15; of these n = 2 clinical staff members, n = 13 non-clinical).ResultsFour factors stood out in our analysis as directly affecting procurement decisions: (1) a high level of variation in electronic purchasing and inventory management procedures throughout the Trust, (ii) an inaccurate and cumbersome search facility on the internal electronic procurement platform, exacerbated by poor IT skills training and support (iii) an inefficient purchase approvals system and (iv) multiple working sites and cluttered environments. We observed that these factors led requisitioners to employ a variety of strategies or so-called 'workarounds' to overcome the challenges they encountered, including stockpiling, relying on internal and supplier relationships, by-passing procedures to save time, purchasing outside existing agreements to save cost, and (re) delegating purchasing responsibilities among requisitioner staff - which both addressed and created difficulties.ConclusionsWorking with the assumption that staff 'workarounds' indicate where main issues lie, we offer four possible explanations to why they occur: (a) to maintain services and prepare for future care requirements, (b) to save on costs for the organisation, (c) to develop skills and development in purchasing and (d) to break silos and work collaboratively. These four explanations help provide initial starting points for improving efficiencies in health supplies' procurement processes.

Project description:BackgroundRecent discussions about health care reform have raised questions regarding the value of advance directives.MethodsWe used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making.ResultsOf 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care.ConclusionsBetween 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.

Project description:ImportanceHospitalized older adults often lack decisional capacity, but outside of the intensive care unit and end-of-life care settings, little is known about the frequency of decision making by family members or other surrogates or its implications for hospital care.ObjectiveTo describe the scope of surrogate decision making, the hospital course, and outcomes for older adults.Design, setting, and participantsProspective, observational study conducted in medicine and medical intensive care unit services of 2 hospitals in 1 Midwestern city in 1083 hospitalized older adults identified by their physicians as requiring major medical decisions.Main outcomes and measuresClinical characteristics, hospital outcomes, nature of major medical decisions, and surrogate involvement.ResultsAccording to physician reports, at 48 hours of hospitalization, 47.4% (95% CI, 44.4%-50.4%) of older adults required at least some surrogate involvement, including 23.0% (20.6%-25.6%) with all decisions made by a surrogate. Among patients who required a surrogate for at least 1 decision within 48 hours, 57.2% required decisions about life-sustaining care (mostly addressing code status), 48.6% about procedures and operations, and 46.9% about discharge planning. Patients who needed a surrogate experienced a more complex hospital course with greater use of ventilators (2.5% of patients who made decisions and 13.2% of patients who required any surrogate decisions; P < .001), artificial nutrition (1.7% of patients and 14.4% of surrogates; P < .001), and length of stay (median, 6 days for patients and 7 days for surrogates; P < .001). They were more likely to be discharged to an extended-care facility (21.2% with patient decisions and 40.9% with surrogate decisions; P < .001) and had higher hospital mortality (0.0% patients and 5.9% surrogates; P < .001). Most surrogates were daughters (58.9%), sons (25.0%), or spouses (20.6%). Overall, only 7.4% had a living will and 25.0% had a health care representative document in the medical record.Conclusions and relevanceSurrogate decision making occurs for nearly half of hospitalized older adults and includes both complete decision making by the surrogate and joint decision making by the patient and surrogate. Surrogates commonly face a broad range of decisions in the intensive care unit and the hospital ward setting. Hospital functions should be redesigned to account for the large and growing role of surrogates, supporting them as they make health care decisions.

Dataset Information

Defining Familial Interactions and Networks: An Exploratory Qualitative Study on Family Networks and Surrogate Decision-Making.

Design

Setting

Patients

Intervention

Measurements and main results

Conclusions

Publications

Defining Familial Interactions and Networks: An Exploratory Qualitative Study on Family Networks and Surrogate Decision-Making.

Similar Datasets

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