Intensivist-reported Facilitators and Barriers to Discussing Post-Discharge Outcomes with Intensive Care Unit Surrogates. A Qualitative Study

Turnbull, Alison E.; Davis, Wesley E.; White, Douglas B.; Eakin, Michelle N.

doi:10.1513/annalsats.201603-212oc

Cited by 23 publications

(17 citation statements)

References 40 publications

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“…These have been reported in different forms which include the following: tension between HCP's professional responsibilities to discuss likely patient functional outcomes versus uncertainty about their ability to predict such outcomes. Others included unrealistic optimistic expectations of recovery among ICU surrogates, minimal confidence applying existing outcomes of research to individual patients and unrealistic expectations about operational capabilities (Downey et al, ; Ganz & Yoffe, ; Tunlind et al, ; Turnbull et al, ).…”

Section: Resultsmentioning

confidence: 99%

“…Although talks about PFCC have gained momentum globally, the greatest challenge has been involvement of patients and families in different dimensions of PFCC (Barry & Edgman‐Levitan, ). Barriers to achievement of PFCC across studies include organizational challenges, communication challenges, lack of team coordination and negative perceptions towards PFCC (Tunlind, Granstrom & Engstrom, ; Esmaeili, Cheraghi, & Salsali, ; Ganz & Yoffe, ; Turnbull, Davis, Needham, White, & Eakin, ; Wilkes, Marcin, Ritter, & Pruitt, ).…”

Section: Introductionmentioning

confidence: 99%

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Barriers to patient and family‐centred care in adult intensive care units: A systematic review

2019

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Aim Despite remarkable theoretical evidence of positive outcomes of patient and family‐centred care, it is rarely performed in the intensive care setting. The aim of this review was to assess the barriers to patient and family‐centred care among healthcare providers, patients and family members in adult intensive care units. Design A systematic review of both qualitative and quantitative studies. Methods The search strategy sought for published peer‐reviewed research papers limited to English language from conception to 2018. The review protocol was registered in the CRD Prospero database (CRD42018086838). Literature search was carried out in four databases: EMBASE, Cochrane Library, PubMed and Scopus where keywords “barriers,” “patient and family centered care,” “patient‐centered care” and “intensive care unit” appeared in any part of the reference. Hand search of reference lists of identified papers was also done to capture all pertinent materials. Each study was assessed by three independent reviewers against the inclusion criteria. Evidence was graded according to sampling quality, quantity and measurement of intended outcomes. Screening of studies and citations resulted in seven studies that were included in the analysis. Results Barriers to patient and family‐centred care broadly fall under four categories; lack of understanding of what is needed to achieve patient and family‐centred care, organizational barriers, individual barriers and interdisciplinary barriers.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Barriers to patient and family‐centred care in adult intensive care units: A systematic review

2019

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“…Input from multi-disciplinary stakeholders was solicited during design of the intervention. First, as part of a qualitative study of physician-perceived facilitators and barriers to discussing post-hospitalization outcomes with ICU families,[ 24 ] intensivists at 20 hospitals across the U.S. were asked to describe the behaviors of effective ICU proxies, and to suggest questions that proxies should ask intensivists. We used these responses to draft an initial version of a short booklet and elicited feedback from the following JHH stakeholders: the JHH Patient and Family Advisory Council, MICU social workers, risk management (legal counsel), patient relations, chaplaincy and spiritual care, the MICU end-of-life interest group (primarily comprised of nurses), MICU nurse practitioners and physician assistants, as well as pulmonary and critical care fellows and MICU attending physicians.…”

Section: Methodsmentioning

confidence: 99%

A brief intervention for preparing ICU families to be proxies: A phase I study

2017

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BackgroundFamily members of critically ill patients report high levels of conflict with clinicians, have poor understanding of prognosis, struggle to make decisions, and experience substantial symptoms of anxiety, depression, and post-traumatic stress regardless of patient survival status. Efficient interventions are needed to prepare these families to act as patient proxies.ObjectivesTo assess a brief “patient activation” intervention designed to set expectations and prepare families of adult intensive care unit (ICU) patients to communicate effectively with the clinical team.DesignPhase I study of acceptability and immediate side effects.Setting and participants122 healthcare proxies of 111 consecutive patients with a stay of ≥24 hours in the Johns Hopkins Hospital Medical ICU (MICU), in Baltimore, Maryland.InterventionReading aloud to proxies from a booklet (Flesch-Kincard reading grade level 3.8) designed with multidisciplinary input including from former MICU proxies.ResultsEnrolled proxies had a median age of 51 years old with 83 (68%) female, and 55 (45%) African-American. MICU mortality was 18%, and 37 patients (33%) died in hospital or were discharged to hospice. Among proxies 98% (95% CI: 94% - 100%) agreed or strongly agreed that the intervention was appropriate, 98% (95% CI: 92% - 99%) agreed or strongly agreed that it is important for families to know the information in the booklet, and 54 (44%, 95% CI 35%– 54%) agreed or strongly agreed that parts of the booklet are upsetting. Upset vs. non-upset proxies were not statistically or substantially different in terms of age, sex, education level, race, relation to the patient, or perceived decision-making authority.ConclusionsThis patient activation intervention was acceptable and important to nearly all proxies. Frequently, the intervention was simultaneously rated as both acceptable/important and upsetting. Proxies who rated the intervention as upsetting were not identifiable based on readily available proxy or patient characteristics.

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“…In audio-recorded family meetings, intensivists discussed the long-term quality of life in only 52 (45%) of 116 meetings, 67 and long-term physical and cognitive function in 9 (12%) of 71 meetings, 68 with most meetings focused instead on the patient’s current condition and descriptions of diagnostic or life-prolonging treatment options. 69 Among the factors making intensivists hesitant to discuss long-term outcomes are scarcity of contact with patients beyond ICU discharge, discomfort expressing uncertainty, 70 and even the belief among some clinicians that long-term outcomes should not influence decisions. 71…”

Section: Obstacles To Implementing Goal-concordant Icu Carementioning

confidence: 99%

Aligning use of intensive care with patient values in the USA: past, present, and future

Turnbull

Bosslet

Kross

2019

The Lancet Respiratory Medicine

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For more than three decades, both medical professionals and the public have worried that many patients receive non-beneficial care in US intensive care units during their final months of life. Some of these patients wish to avoid severe cognitive and physical impairments, and protracted deaths in the hospital setting. Recognising when intensive care will not restore a person’s health, and helping patients and families embrace goals related to symptom relief, interpersonal connection, or spiritual fulfilment are central challenges of critical care practice in the USA. We review trials from the past decade of interventions designed to address these challenges, and present reasons why evaluating, comparing, and implementing these interventions have been difficult. Careful scrutiny of the design and interpretation of past trials can show why improving goal concordant care has been so elusive, and suggest new directions for the next generation of research.

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Intensivist-reported Facilitators and Barriers to Discussing Post-Discharge Outcomes with Intensive Care Unit Surrogates. A Qualitative Study

Cited by 23 publications

References 40 publications

Barriers to patient and family‐centred care in adult intensive care units: A systematic review

Barriers to patient and family‐centred care in adult intensive care units: A systematic review

A brief intervention for preparing ICU families to be proxies: A phase I study

Aligning use of intensive care with patient values in the USA: past, present, and future

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