RESUMEN
BACKGROUND: In end-of-life situations, the phrase "do everything" is sometimes invoked by physicians, patients, or substitute decision-makers (SDM), though its meaning is ambiguous. We examined instances of the phrase "do everything" in the archive of the Ontario Consent and Capacity Board (CCB) in Canada, a tribunal with judicial authority to adjudicate physician-patient conflicts in order to explore its potential meanings. METHODS: We systematically searched the CCB's online public archive from its inception to 2018 for any references to "do everything" in the context of critical care medicine and end-of-life care. Two independent assessors reviewed decisions, collected characteristics, and identified key themes. RESULTS: Of 598 cases in the archive, 41 referred to "do everything" in end-of-life situations. The phrase was overwhelmingly invoked by SDMs (38/41, 93%), typically to advocate for life-prolonging measures that contradicted physician advice. Physicians generally related "doing everything" to describe the interventions they had already performed (3/41, 7%), using it to recommend focusing on patients' quality of life. SDMs were generally reluctant to accept death, whereas physicians found prolonging life at all costs to be morally distressing. The CCB did not interpret appeals to "do everything" legally but followed existing laws by deferring to patients' prior wishes whenever known, or to concepts of "best interests" when not. The CCB generally recommended against life-prolonging measures in these cases (26/41, 63%), focusing on patients' "well-being" and "best interests." CONCLUSIONS: In this unique sample of cases involving conflict surrounding resuscitation and end-of-life care, references to "do everything" highlighted conflicts over quantity versus quality of life. These appeals were associated with signs of cognitive distress on the behalf of SDMs who were facing the prospect of a patient's death, whereas physicians identified moral distress related to the prolongation of patients' suffering through their use of life-sustaining interventions. This divergence in perspectives on death versus suffering was consistently the locus of conflict. These findings support the importance of tools such as the Serious Illness Conversation Guide that can be used by physicians to direct conversations on the patients' goals, wishes, trade-offs, and to recommend a treatment plan that may include palliative care. TRIAL REGISTRATION: Not applicable.
Asunto(s)
Toma de Decisiones , Calidad de Vida , Muerte , Humanos , Consentimiento Informado , OntarioRESUMEN
BACKGROUND AND PURPOSE: Recovery after intracerebral haemorrhage (ICH) is often slower than ischemic stroke. Despite this, ICH research often quantifies recovery using the same outcome measures obtained at the same timepoints as ischemic stroke. The primary objective of this scoping review is to map the existing literature to determine when and how outcomes are being measured in prospective studies of recovery after ICH. METHODS: We searched MEDLINE, Embase, Cochrane Central Register of Controlled Trials and Web of Science from inception to November 2019, for prospective studies that included patients with ICH. Two investigators independently screened the studies and extracted data around timing and type of outcome assessment. RESULTS: Among the 9761 manuscripts reviewed, 395 met inclusion criteria, of which 276 were observational studies and 129 were interventional studies that enrolled 66274 patients. Mortality was assessed in 93% of studies. Functional outcomes were assessed in 85% of studies. The most frequently used functional assessment tool was the modified Rankin Scale (mRS) (60%), followed by the National Institute of Health Stroke Severity Scale (22%) and Barthel Index (21%). The most frequent timepoint at which mortality was assessed was 90 days (41%), followed by 180 days (18%) and 365 days (12%), with 2% beyond 1 year. The most frequent timepoint used for assessing mRS was 90 days (62%), followed by 180 days (21%) and 365 days (17%). CONCLUSION: While most prospective ICH studies report mortality and functional outcomes only at 90 days, a significant proportion do so at 1 year and beyond. Our results support the feasibility of collecting long-term outcome data to optimally assess recovery in ICH.