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1.
JAMA Netw Open ; 3(5): e205188, 2020 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-32427323

RESUMO

Importance: Professional guidelines have identified key communication skills for shared decision-making for critically ill patients, but it is unclear how intensivists interpret and implement them. Objective: To compare the self-evaluations of intensivists reviewing transcripts of their own simulated intensive care unit family meetings with the evaluations of trained expert colleagues. Design, Setting, and Participants: A posttrial web-based survey of intensivists was conducted between January and March 2019. Intensivists reviewed transcripts of simulated intensive care unit family meetings in which they participated in a previous trial from October 2016 to November 2017. In the follow-up survey, participants identified if and how they performed key elements of shared decision-making for an intensive care unit patient at high risk of death. Transcript texts that intensivists self-identified as examples of key communication skills recommended by their professional society's policy on shared decision-making were categorized. Main Outcomes and Measures: Comparison of the evaluations of 2 blinded nonparticipant intensivist colleagues with the self-reported responses of the intensivists. Results: Of 116 eligible intensivists, 76 (66%) completed the follow-up survey (mean [SD] respondent age was 43.1 [8.1] years; 72% were male). Sixty-one of 76 intensivists reported conveying prognosis; however, blinded colleagues who reviewed the deidentified transcripts were less likely to report that prognosis had been conveyed than intensivists reviewing their own transcripts (42 of 61; odds ratio, 0.10; 95% CI, 0.01-0.44; P < .001). When reviewing their own transcript, intensivists reported presenting many choices, with the most common choice being code status. They also provided a variety of recommendations, with the most common being to continue the current treatment plan. Thirty-three participants (43%) reported that they offered care focused on comfort, but blinded colleagues rated only 1 (4%) as explaining this option in a clear manner. Conclusions and Relevance: In this study, guidelines for shared decision-making and end of life care were interpreted by intensivists in disparate ways. In the absence of training or personalized feedback, self-assessment of communication skills may not be interpreted consistently.


Assuntos
Cuidados Críticos , Tomada de Decisão Compartilhada , Médicos/psicologia , Relações Profissional-Família , Autoavaliação (Psicologia) , Adulto , Feminino , Humanos , Masculino , Guias de Prática Clínica como Assunto , Inquéritos e Questionários
2.
J Pain Symptom Manage ; 60(2): e93-e97, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32333961

RESUMO

Family support is more, not less, important during crisis. However, during the COVID-19 pandemic, maintaining public safety necessitates restricting the physical presence of families for hospitalized patients. In response, health systems must rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence. Strategies for maintaining family integrity must acknowledge clinicians' limited time and attention to devote to learning new skills. Internet-based solutions can facilitate the routine, predictable, and structured communication, which is central to family-centered care. But the reliance on technology may compromise patient privacy and exacerbate racial, socioeconomic, and geographic disparities for populations that lack access to reliable internet access, devices, or technological literacy. We provide a toolbox of strategies for supporting family-centered inpatient care during physical distancing responsive to the current clinical climate. Innovations in the implementation of family involvement during hospitalizations may lead to long-term progress in the delivery of family-centered care.


Assuntos
Infecções por Coronavirus/terapia , Família , Pneumonia Viral/terapia , COVID-19 , Comunicação , Infecções por Coronavirus/prevenção & controle , Hospitalização , Humanos , Pandemias/prevenção & controle , Assistência Centrada no Paciente/métodos , Pneumonia Viral/prevenção & controle , Assistência Terminal/ética , Assistência Terminal/métodos
3.
JAMA Netw Open ; 3(4): e201945, 2020 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-32236533

RESUMO

Importance: Discordance about prognosis between a patient's health care decision-making surrogate and the treating intensivist is common in the intensive care unit (ICU). Empowering families, friends, and caregivers of patients who are critically ill to make informed decisions about care is important, but it is unclear how best to communicate prognostic information to surrogates when a patient is expected to die. Objective: To determine whether family members, who are often health care decision-making surrogates, interpret intensivists as being more optimistic when questions about prognosis in the ICU are answered indirectly. Design, Setting, and Participants: This web-based randomized trial was conducted between September 27, 2019, and October 17, 2019, among a national sample of adult children, spouses, partners, or siblings of people with chronic obstructive pulmonary disease who were receiving long-term oxygen therapy. Participants were shown video vignettes depicting an intensivist answering a standardized question about the prognosis of a patient at high risk of death on day 3 of ICU admission. Participants were excluded if they had worked as a physician, nurse, or advanced health care practitioner. Data were analyzed from October 18, 2019, to November 12, 2019. Interventions: Participants were randomized to view 1 of 4 intensivist communication styles in response to the question "What do you think is most likely to happen?": (1) a direct response (control), (2) an indirect response comparing the patient's condition with that of other patients, (3) an indirect response describing the patient's deteriorating physiological condition, or (4) redirection to a discussion of the patient's values and goals. Main Outcomes and Measures: Participant responses to 2 questions: (1) "If you had to guess, what do you think the doctor thinks is the chance that your loved one will survive this hospitalization?" and (2) "What do you think are the chances that your loved one will survive this hospitalization?" answered using a 0% to 100% probability scale. Results: Among 302 participants (median [interquartile range] age, 49 [38-59] years; 204 [68%] women) included in the trial, 165 (55%) were adult children of the individual with chronic obstructive pulmonary disease; 77 participants were randomized to view a direct response, 77 participants were randomized to view an indirect response referencing other patients, 68 participants were randomized to view an indirect response referencing physiological condition, and 80 participants were randomized to view a redirection response. Compared with participants who viewed a direct response, participants who viewed an indirect response referencing other patients (ß = 10 [95% CI, 1-19]; P = .03), physiological condition (ß = 10 [95% CI, 0-19]; P = .04), or redirection to a discussion of the patient's values and goals (ß = 19 [95% CI, 10-28]; P < .001) perceived the intensivist to have a significantly more optimistic prognostic estimate. Conclusions and Relevance: These findings suggest that family members interpret indirect or redirection responses to questions about prognosis in the ICU setting as more optimistic than direct responses. Trial Registration: ClinicalTrials.gov Identifier: NCT04239209.


Assuntos
Estado Terminal/enfermagem , Família/psicologia , Unidades de Terapia Intensiva/normas , Treinamento por Simulação/métodos , Adulto , Estudos de Casos e Controles , Comunicação , Tomada de Decisões/fisiologia , Feminino , Hospitalização/estatística & dados numéricos , Humanos , Unidades de Terapia Intensiva/tendências , Intervenção Baseada em Internet , Masculino , Pessoa de Meia-Idade , Oxigênio/uso terapêutico , Percepção , Relações Profissional-Família/ética , Prognóstico , Doença Pulmonar Obstrutiva Crônica/terapia , Estudos Retrospectivos , Estados Unidos/epidemiologia
5.
Skeletal Radiol ; 40(12): 1611-5, 2011 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-21935720

RESUMO

Gaucher disease (GD) is an autosomal recessive lysosomal storage disorder characterized by the reduced or absent activity of glucocerebrosidase. The disease is split into three types. Type 3, or chronic neuronopathic GD, manifests with heterogeneous clinical presentations. Skeletal manifestations of GD can include abnormal bone remodeling resulting in the characteristic Erlenmeyer flask deformities, painful bone crises, osteopenia, and an increased frequency of fractures. Osteolytic lesions can also occur but are rare and tend to be large, expanding intramedullary lesions with cortical thinning. We present two adolescent patients with type 3 GD who developed bilateral symmetrical cortical osteolytic lesions. The lesions in both cases demonstrate predominant cortical scalloping with fairly indolent growth. Neither patient manifests some of the more common bony manifestations of GD--bone crises or osteonecrosis. These atypical and unique skeletal findings in two unrelated probands with type 3 GD further expand the extent of phenotypic variation encountered in this single gene disorder.


Assuntos
Doença de Gaucher/complicações , Osteólise/diagnóstico , Adolescente , Feminino , Doença de Gaucher/diagnóstico , Humanos , Osteólise/etiologia
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