Opening the Door: The Experience of Chronic Critical Illness in a Long-Term Acute Care Hospital.

OBJECTIVE: 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. DESIGN: We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed. SETTING: One long-term acute care hospital. SUBJECTS: Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates. INTERVENTION: Semi-structured conversation about quality of life, expectations, and planning for setbacks. MEASUREMENTS AND MAIN RESULTS: 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. CONCLUSIONS: 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.

Delayed access and survival in idiopathic pulmonary fibrosis: a cohort study.

RATIONALE: Idiopathic pulmonary fibrosis is often initially misdiagnosed. Delays in accessing subspecialty care could lead to worse outcomes among those with idiopathic pulmonary fibrosis. OBJECTIVES: To examine the association between delayed access to subspecialty care and survival time in idiopathic pulmonary fibrosis. METHODS: We performed a prospective cohort study of 129 adults who met American Thoracic Society criteria for idiopathic pulmonary fibrosis evaluated at a tertiary care center. Delay was defined as the time from the onset of dyspnea to the date of initial evaluation at a tertiary care center. We used competing risk survival methods to examine survival time and time to transplantation. MEASUREMENTS AND MAIN RESULTS: The mean age was 63 years and 76% were men. The median delay was 2.2 years (interquartile range 1.0­3.8 yr), and the median follow-up time was 1.1 years. Age and lung function at the time of evaluation did not vary by delay. A longer delay was associated with an increased risk of death independent of age, sex, forced vital capacity, third-party payer, and educational attainment (adjusted hazard ratio per doubling of delay was 1.3, 95% confidence interval 1.03 to 1.6). Longer delay was not associated with a lower likelihood of undergoing lung transplantation. CONCLUSIONS: Delayed access to a tertiary care center is associated with a higher mortality rate in idiopathic pulmonary fibrosis independent of disease severity. Early referral to a specialty center should be considered for those with known or suspected interstitial lung disease.

Adherence and Concordance between Serious Illness Care Planning Conversations and Oncology Clinician Documentation among Patients with Advanced Cancer.

Background: Serious illness conversations are part of advance care planning (ACP) and focus on prognosis, values, and goals in patients who are seriously ill. To be maximally effective, such conversations must be documented accurately and be easily accessible. Objectives: The two coprimary objectives of the study were to assess concordance between written documentation and recorded audiotaped conversations, and to evaluate adherence to the Serious Illness Conversation Guide questions. Methods: Data were obtained as part of a trial in patients with advanced cancer. Clinicians were trained to use a guide to conduct and document serious illness conversations. Conversations were audiotaped. Two researchers independently compared audiorecordings with the corresponding documentation in an electronic health record (EHR) template and free-text progress notes, and rated the degree of concordance and adherence. Results: We reviewed a total of 25 audiorecordings. Clinicians addressed 87% of the conversation guide elements. Prognosis was discussed least frequently, only in 55% of the patients who wanted that information. Documentation was fully concordant with the conversation 43% of the time. Concordance was best when documenting family matters and goals, and least frequently concordant when documenting prognostic communication. Most conversations (64%) were documented in the template, a minority (28%) only in progress notes and two conversations (8%) were not documented. Concordance was better when the template was used (62% vs. 28%). Conclusion: Clinicians adhered well to the conversation guide. However, key information elicited was documented and fully concordant less than half the time. Greater concordance was observed when clinicians used a prespecified template. The combined use of a guide and EHR template holds promise for ACP conversations.

A Qualitative Study of Serious Illness Conversations in Patients with Advanced Cancer.

Background: Conversations with seriously ill patients about their values and goals have been associated with reduced distress, a better quality of life, and goal-concordant care near the end of life. Yet, little is known about how such conversations are conducted. Objective: To characterize the content of serious illness conversations and identify opportunities for improvement. Design: Qualitative analysis of audio-recorded, serious illness conversations using an evidence-based guide and obtained through a cluster randomized controlled trial in an outpatient oncology setting. Setting/Measurements: Clinicians assigned to the intervention arm received training to use the "Serious Illness Conversation Guide" to have a serious illness conversation about values and goals with advanced cancer patients. Conversations were de-identified, transcribed verbatim, and independently coded by two researchers. Key themes were analyzed. Results: A total of 25 conversations conducted by 16 clinicians were evaluated. The median conversation duration was 14 minutes (range 4-37), with clinicians speaking half of the time. Thematic analyses demonstrated five key themes: (1) supportive dialogue between patients and clinicians; (2) patients' openness to discuss emotionally challenging topics; (3) patients' willingness to articulate preferences regarding life-sustaining treatments; (4) clinicians' difficulty in responding to emotional or ambiguous patient statements; and (5) challenges in discussing prognosis. Conclusions: Data from this exploratory study suggest that seriously ill patients are open to discussing values and goals with their clinician. Yet, clinicians may struggle when disclosing a time-based prognosis and in responding to patients' emotions. Such skills should be a focus for additional training for clinicians caring for seriously ill patients.

Conversations About Goals and Values Are Feasible and Acceptable in Long-Term Acute Care Hospitals: A Pilot Study.

RATIONALE: The chronically critically ill have survived acute critical illness but require prolonged mechanical ventilation. These patients are frequently transferred from acute care to long-term acute care hospitals (LTACHs) for prolonged recovery, yet many suffer setbacks requiring readmission to acute care. The patient's relatively improved condition while at the LTACH might be an opportunity for communication regarding care goals; however, there have been no prior studies of the feasibility of such conversations in the LTACH. OBJECTIVES: To determine the feasibility, acceptability, and potential usefulness of conversations about serious illness with chronic critical illness patients or their surrogate decision makers after LTACH admission. METHODS: We adapted an existing conversation guide for use in chronically critically ill (defined by tracheotomy for prolonged ventilation) LTACH patients or their surrogates to explore views about quality of life, understanding of medical conditions, expectations, and planning for setbacks. These conversations were conducted by one interviewer and summarized for the patients' clinicians. We surveyed patients, surrogates, and clinicians to assess acceptability. MEASUREMENT AND MAIN RESULTS: A total of 70 subjects were approached and 50 (71%) were enrolled, including 30 patients and 20 surrogates. The median duration of the conversation was 14 minutes 45 seconds [IQR 12:46, 19]. The presence of ongoing mechanical ventilation did not lead to longer conversations; in fact, conversations with patients were shorter than those with surrogates. The majority of subjects (81%) described the conversation as worthwhile. The majority of clinicians (73%) reported that the conversation offered a new and significant understanding of the patient's preferences if a setback were to occur. CONCLUSIONS: Conversations about serious illness care goals can be accomplished in a relatively short period of time, are acceptable to chronically critically ill patients and their surrogate decision makers in the LTACH, and are perceived as worthwhile by patients, surrogates, and clinicians.

Peer Support as a Novel Strategy to Mitigate Post-Intensive Care Syndrome.

Post-intensive care syndrome, a condition defined by new or worsening impairment in cognition, mental health, and physical function after critical illness, has emerged in the past decade as a common and life-altering consequence of critical illness. New strategies are urgently needed to mitigate the risk of neuropsychological and functional impairment common after critical illness and to prepare and support survivors on their road toward recovery. The present state of critical care survivorship is described, and postdischarge care delivery in the United States and the potential impact of the present-day fragmented model of care delivery are detailed. A novel strategy that uses peer support groups could more effectively meet the needs of survivors of critical illness and mitigate post-intensive care syndrome.