Chronically 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.
We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed.
One long-term acute care hospital.
Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates.
Semi-structured conversation about quality of life, expectations, and planning for setbacks.
A 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.
Our 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.
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.
Supported, in part, by a grant from the Rx Foundation.
Dr. Lamas' project was supported by Rx Foundation (personally received no support from the Rx Foundation). Dr. Gass’ institution received funding from Rx Foundation. Dr. Bernacki received support for article research from the Geriatric Academic Career Award Health Resources Services Administration. Dr. Block disclosed other support (up to date [Co-editor, Palliative Care] financial reimbursement paid to her). Her institution received funding from the Rx Foundation, Branta Foundation, Charina Foundation, and Dana-Farber Cancer Institute. The remaining authors have disclosed that they do not have any potential conflicts of interest.
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