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How Dutch neurologists involve families of critically ill patients in end-of-life care and decision-making.

ABSTRACT: When critically ill neurologic patients are cognitively incapacitated, decisions about treatment options are delegated to surrogates, usually family members. We conducted qualitative interviews with 20 Dutch neurologists and residents in neurology varying in age, work experience, and workplace to investigate how they involve their patients' family members in decision-making. Their reports revealed that they ascribed 3 different, yet tightly interwoven roles to families: (1) informants about values and preferences of patients, (2) participants in care and care planning, and (3) sufferers themselves. Neurologists regarded decision-making as an integral part of end-of-life care rather than an isolated process, changing the meaning of what decision-making entails. All different roles of family members were important in end-of-life care and decision-making, instead of the single one of legal surrogate. Neurologists need to support family members in these various roles.

SUBMITTER: Seeber AA

PROVIDER: S-EPMC5764428 | biostudies-other | 2015 Feb

REPOSITORIES: biostudies-other

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How Dutch neurologists involve families of critically ill patients in end-of-life care and decision-making.

Seeber Antje A AA Pols A Jeannette AJ Hijdra Albert A Willems Dick L DL

Neurology. Clinical practice 20150201 1

When critically ill neurologic patients are cognitively incapacitated, decisions about treatment options are delegated to surrogates, usually family members. We conducted qualitative interviews with 20 Dutch neurologists and residents in neurology varying in age, work experience, and workplace to investigate how they involve their patients' family members in decision-making. Their reports revealed that they ascribed 3 different, yet tightly interwoven roles to families: (1) informants about valu ...[more]

PMID: 29443179

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Project description:To identify the relationships between advance directive status, demographic characteristics and decisional burden (role stress and depressive symptoms) of surrogate decision-makers (SDMs) of patients with chronic critical illness.Although the prevalence of advance directives among Americans has increased, SDMs are ultimately responsible for complex medical decisions of the chronically critically ill patient. Decisional burden has lasting psychological effects on SDMs. There is insufficient evidence on the influence of advance directives on the decisional burden of surrogate decision-makers of patients with chronic critical illness.The study was a secondary data analysis of cross-sectional data. Data were obtained from 489 surrogate decision-makers of chronically critically ill patients at two academic medical centres in Northeast Ohio, United States, between September 2005-May 2008.Data were collected using demographic forms and questionnaires. A single-item measure of role stress and the Center for Epidemiological Studies Depression (CESD) scale were used to capture the SDM's decisional burden. Descriptive statistics, t-tests, chi-square and path analyses were performed.Surrogate decision-makers who were nonwhite, with low socioeconomic status and low education level were less likely to have advance directive documentation for their chronically critically ill patient. The presence of an advance directive mitigates the decisional burden by directly reducing the SDM's role stress and indirectly lessening the severity of depressive symptoms.Most SDMs of chronically critically ill patients will not have the benefit of knowing the patient's preferences for life-sustaining therapies and consequently be at risk of increased decisional burden.Study results are clinically useful for patient education on the influence of advance directives. Patients may be informed that SDMs without advance directives are at risk of increased decisional burden and will require decisional support to facilitate patient-centred decision-making.

Project description:RationaleFamilies of critically ill patients are often asked to make difficult decisions to pursue, withhold, or withdraw aggressive care or resuscitative measures, exercising "substituted judgment" from the imagined standpoint of the patient. Conflict may arise between intensive care unit (ICU) physicians and family members regarding the optimal course of care.ObjectivesTo characterize how ICU physicians approach and manage conflict with surrogates regarding end-of-life decision-making.MethodsSemistructured interviews were conducted with 18 critical care physicians from four academically affiliated hospitals. Interview transcripts were analyzed using methods of grounded theory.ResultsPhysicians described strategies for engaging families to resolve conflict about end-of-life decision-making and tending to families' emotional health. Physicians commonly began by gauging family receptiveness to recommendations from the healthcare team. When faced with resistance to recommendations for less aggressive care, approaches ranged from deference to family wishes to various persuasive strategies designed to change families' minds, and some of those strategies may be counterproductive or harmful. The likelihood of deferring to family in the event of conflict was associated with the perceived sincerity of the family's "substituted judgment" and the ability to control patient pain and suffering. Physicians reported concern for the family's emotional needs and made efforts to alleviate the burden on families by assuming decision-making responsibility and expressing nonabandonment and commitment to the patient. Physicians were attentive to repairing damage to their relationship with the family in the aftermath of conflict. Finally, physicians described their own emotional responses to conflict, ranging from frustration and anxiety to satisfaction with successful resolution of conflict.ConclusionsCritical care physicians described a complex and multilayered approach to physician-family conflict. The reported strategies offer insight into pragmatic approaches to achieving resolution of conflict while attending to both family and physician emotional impact, and they also highlight some potentially unhelpful or harmful behaviors that should be avoided. Further research is needed to evaluate how these strategies are perceived by families and other ICU clinicians and how they affect patient, family, and clinician outcomes.

Project description:BackgroundThe death rate in intensive care units (ICUs) can reach 20%. More than half occurs after a decision of care withholding/withdrawal. We aimed at describing and evaluating the experience of ICU physicians and nurses involved in the end-of-life (EOL) procedure. Primary objective was the evaluation of the experience of EOL assessed by the CAESAR questionnaire. Secondary objectives were to describe factors associated with a low or high score and to examine the association between Numeric Analogic Scale and quality of EOL.MethodsConsecutive adult patients deceased in 52 ICUs were included between April and June 2018. Characteristics of patients and caregivers, therapeutics and care involved after withdrawal were recorded. CAESAR score included 15 items, rated from 1 (traumatic experience) to 5 (comforting experience). The sum was rated from 15 to 75 (the highest, the best experience). Numeric Analogic Scale was rated from 0 (worst EOL) to 10 (optimal EOL).ResultsFive hundred and ten patients were included, 403 underwent decision of care withholding/withdrawal, and among them 362 underwent effective care withdrawal. Among the 510 patients, mean CAESAR score was 55/75 (± 6) for nurses and 62/75 (± 5) for physicians (P < 0.001). Mean Numeric Analogic Scale was 8 (± 2) for nurses and 8 (± 2) for physicians (P = 0.06). CAESAR score and Numeric Analogic Scale were significantly but weakly correlated. They were significantly higher for both nurses and physicians if the patient died after a decision of withholding/withdrawal. In multivariable analysis, among the 362 patients with effective care withdrawal, disagreement on the intensity of life support between caregivers, non-invasive ventilation and monitoring and blood tests the day of death were associated with lower score for nurses. For physicians, cardiopulmonary resuscitation the day of death was associated with lower score in multivariable analysis.ConclusionExperience of EOL was better in patients with withholding/withdrawal decision as compared to those without. Our results suggest that improvement of nurses' participation in the end-of-life process, as well as less invasive care, would probably improve the experience of EOL for both nurses and physicians. Registration: ClinicalTrial.gov: NCT03392857.

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How Dutch neurologists involve families of critically ill patients in end-of-life care and decision-making.

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How Dutch neurologists involve families of critically ill patients in end-of-life care and decision-making.

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