1. Opening the Door
- Author
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Anthony F. Massaro, Jonathon Gass, Susan D. Block, Nathan J. Pertsch, Daniela Lamas, Robert L. Owens, Rachelle Bernacki, and R. Nicholas Nace
- Subjects
Male ,medicine.medical_specialty ,Time Factors ,Critical Illness ,medicine.medical_treatment ,MEDLINE ,Anxiety ,Critical Care and Intensive Care Medicine ,Patient Care Planning ,Interviews as Topic ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,Tracheotomy ,Acute care ,medicine ,Humans ,Transitional care ,030212 general & internal medicine ,Intensive care medicine ,Qualitative Research ,Aged ,Optimism ,business.industry ,Organ dysfunction ,Transitional Care ,Middle Aged ,Respiration, Artificial ,Hospitals ,Caregivers ,030228 respiratory system ,Critical illness ,Emergency medicine ,Quality of Life ,Female ,medicine.symptom ,business ,Stress, Psychological ,Qualitative research - Abstract
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.
- Published
- 2017