• Daniela J Lamas, Robert L Owens, R Nicholas Nace, Anthony F Massaro, Nathan J Pertsch, Jonathon Gass, Rachelle E Bernacki, and Susan D Block.
• 1Division of Pulmonary and Critical Care Medicine, Department of Medicine, Brigham and Women's Hospital, Boston, MA.2Ariadne Labs at Brigham and Women's Hospital and Harvard T.H. Chen School of Public Health, Boston, MA.3Division of Pulmonary, Critical Care and Sleep Medicine, Department of Medicine, University of California San Diego, San Diego, CA.4Department of Medicine, Spaulding Hospital for Continuing Medical Care, Cambridge, MA.5Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA.6Division of Palliative Care, Department of Medicine, Brigham and Women's Hospital, Boston, MA.7Department of Psychiatry, Brigham and Women's Hospital, Boston, MA.
• Crit. Care Med. 2017 Apr 1; 45 (4): e357-e362.

ObjectiveChronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates.DesignWe conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed.SettingOne long-term acute care hospital.SubjectsChronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates.InterventionSemi-structured conversation about quality of life, expectations, and planning for setbacks.Measurements And Main ResultsA total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year.ConclusionsOur study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

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