Outcomes and Experiences of Patients and Their Caregivers After Severe Stroke Requiring Tube Feeding in Peru.

OBJECTIVES: Evaluate clinical outcomes of stroke survivors in Peru discharged with artificial nutrition via a feeding tube (FT), and explore perspectives and experiences of these patients and their caregivers. METHODS: Retrospective chart review to describe the prevalence of FT placement and characteristics of patients admitted with stroke to the Instituto Nacional de Ciencias Neurológicas in Lima, Peru between January 2019 and 2021. Follow-up calls to stroke survivors discharged home with FTs or their caregivers included quantitative and qualitative questions to assess long-term outcome and explore perspectives around poststroke care and FT management. We analyzed quantitative data descriptively and applied thematic analysis to qualitative data using a consensus-driven codebook. RESULTS: Of 812 hospitalized patients with stroke, 146 (18%) were discharged home with FT, all with nasogastric tubes (NGTs). Follow-up calls were performed a median of 18 months after stroke with 96 caregivers and three patients. Twenty-five patients (25%) had died, and 82% of survivors (n = 61) remained dependent for some care. Four themes emerged from interviews: (1) perceived suffering (physical, emotional, existential) associated with the NGT and stroke-related disability, often exacerbated by lack of preparedness or prognostic awareness; (2) concerns around compromised personhood and value-discordant care; (3) coping with their loved-one's illness and the caregiving role; and (4) barriers to NGT care and skill acquisition. CONCLUSION: We identified a high burden of palliative and supportive needs among severe stroke survivors with NGTs and their caregivers suggesting opportunities to improve poststroke care through education, communication, and support.

Perceptions of Critical Care Shortages, Resource Use, and Provider Well-being During the COVID-19 Pandemic: A Survey of 1,985 Health Care Providers in Brazil.

BACKGROUND: Brazil has been disproportionately affected by COVID-19, placing a high burden on ICUs. RESEARCH QUESTION: Are perceptions of ICU resource availability associated with end-of-life decisions and burnout among health care providers (HCPs) during COVID-19 surges in Brazil? STUDY DESIGN AND METHODS: We electronically administered a survey to multidisciplinary ICU HCPs during two 2-week periods (in June 2020 and March 2021) coinciding with COVID-19 surges. We examined responses across geographical regions and performed multivariate regressions to explore factors associated with reports of: (1) families being allowed less input in decisions about maintaining life-sustaining treatments for patients with COVID-19 and (2) emotional distress and burnout. RESULTS: We included 1,985 respondents (57% physicians, 14% nurses, 12% respiratory therapists, 16% other HCPs). More respondents reported shortages during the second surge compared with the first (P < .05 for all comparisons), including lower availability of intensivists (66% vs 42%), ICU nurses (53% vs 36%), ICU beds (68% vs 22%), and ventilators for patients with COVID-19 (80% vs 70%); shortages were highest in the North. One-quarter of HCPs reported that families were allowed less input in decisions about maintaining life-sustaining treatments for patients with COVID-19, which was associated with lack of intensivists (adjusted relative risk [aRR], 1.37; 95% CI, 1.05-1.80) and ICU beds (aRR, 1.71; 95% CI, 1.16-2.62) during the first surge and lack of N95 masks (aRR, 1.43; 95% CI, 1.10-1.85), noninvasive positive pressure ventilation (aRR, 1.56; 95% CI, 1.18-2.07), and oxygen concentrators (aRR, 1.50; 95% CI, 1.13-2.00) during the second surge. Burnout was higher during the second surge (60% vs 71%; P < .001), associated with witnessing colleagues at one's hospital contract COVID-19 during both surges (aRR, 1.55 [95% CI, 1.25-1.93] and 1.31 [95% CI, 1.11-1.55], respectively), as well as worries about finances (aRR, 1.28; 95% CI, 1.02-1.61) and lack of ICU nurses (aRR, 1.25; 95% CI, 1.02-1.53) during the first surge. INTERPRETATION: During the COVID-19 pandemic, ICU HCPs in Brazil experienced substantial resource shortages, health care disparities between regions, changes in end-of-life care associated with resource shortages, and high proportions of burnout.

Palliative Care: Perceptions, Experiences, and Attitudes in a Peruvian Neurologic Hospital.

BACKGROUND: The development of palliative care in Peru remains limited, particularly for nononcological services, such as neurology. The goal of this study was to explore attitudes toward and knowledge about palliative and end-of-life care among patients, families, nurses, and doctors in a specialized neurological institute in Lima, Peru. MATERIALS AND METHODS: We used a mixed methods approach consisting of 78 surveys and 21 qualitative, semistructured interviews that were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Surveys identified a substantial need for palliative care in the neurological institute (63% of doctors and 77% of nurses reported palliative care needs in >30% of their patients), and for training (82% of doctors and 69% of nurses reported inadequate palliative care education). The key themes emerging from qualitative interviews concerned transparency of communication about prognosis and end-of-life choices in neurological disease. Familiarity with advance directives was limited among both clinicians and families, and participants were divided about whether or not patients should be informed of serious diagnoses and prognoses, and who should inform them. Barriers to transparency in patient-physician communication included (1) expectation of cure; (2) physician's lack of training in communication and end-of-life care; (3) a paternalistic culture; and (4) the nature of neurological diseases. CONCLUSIONS: Our study highlights opportunities to enhance palliative care and communication education for neurology providers and the public in Peru, a country that currently has no palliative care training program and no legal basis for advance directives.