[Home mechancial ventilation: quality of life and the final stage of life]. / Außerklinische Beatmung: Lebensqualität und Lebensende.

The evaluation of health-related quality of life (HRQL) has gained importance in recent years. Disease-specific questionnaires are available for respiratory insufficiency, which enable the assessment of HRQL. The Severe Respiratory Insufficiency (SRI) questionnaire, which was specially developed for patients with respiratory insufficiency, is ideal for quantifying the quality of life in patients receiving home mechanical ventilation (HMV). Studies using the SRI questionnaire demonstrated that the physical functioning of patients with chronic lung diseases of various etiologies is significantly impaired, but frequently without significant impairment of psychological well-being. Therefore, severity of the disease and HRQL do not necessarily correlate with each other.Both invasive and non-invasive mechanical ventilation can improve quality of life. Co-morbidity, and above all advanced age, have the highest negative predictive value with regard to in-hospital mortality and weaning failure. The number of patients older than 80 years who remain dependent on invasive HMV after prolonged weaning in Germany is increasing significantly. High dependence on invasive HMV is often associated with a loss of quality of life and autonomy. Thus, ethical issues of the continued treatment of ventilated patients at the end of life are discussed increasingly.After weaning failure, the indication for invasive HMV should be critically examined and should focus on potentially severely reduced quality of life and poor prognosis, as well as the patient's wishes. If previously agreed treatment goals can no longer be achieved during the course of invasive HMV, changing the therapy goals should be discussed within the clinical team, with the patient, their relatives and, if necessary, with legal representatives.In order to avoid overtreatment and unnecessary patient suffering during invasive HMV, advanced care planning should be started as early as possible and if necessary accompanied by palliative medical measures.

Novel Definitions of Wellness and Distress among Family Caregivers of Patients with Acute Cardiorespiratory Failure: A Qualitative Study.

Rationale: Family caregivers of patients with acute cardiorespiratory failure are at high risk for distress, which is typically defined as the presence of psychological symptoms such as anxiety, depression, or posttraumatic stress. Interventions to reduce caregiver distress and increase wellness have been largely ineffective to date. An incomplete understanding of caregiver wellness and distress may hinder efforts at developing effective support interventions. Objectives: To allow family caregivers to define their experiences of wellness and distress 6 months after patient intensive care unit (ICU) admission and to identify moderators that influence wellness and distress. Methods: Primary family caregivers of adult patients admitted to the medical ICU with acute cardiorespiratory failure were invited to participate in a semistructured interview 6 months after ICU admission as part of a larger prospective cohort study. Interview guides were used to assess caregiver perceptions of their own well-being, record caregiver descriptions of their experiences of family caregiving, and identify key stress events and moderators that influenced well-being during and after the ICU admission. This study was guided by the Chronic Traumatic Stress Framework conceptual model, and data were analyzed using the five-step framework approach. Results: Among 21 interviewees, the mean age was 58 years, 67% were female, and 76% were White. Nearly half of patients (47%) had died before the caregiver interview. At the time of the interview, 9 caregivers endorsed an overall sense of distress, 10 endorsed a sense of wellness, and 2 endorsed a mix of both. Caregivers defined their experiences of wellness and distress as multidimensional and composed of four main elements: 1) positive versus negative physical and psychological outcomes, 2) high versus low capacity for self-care, 3) thriving versus struggling in the caregiving role, and 4) a sense of normalcy versus ongoing life disruption. Postdischarge support from family, friends, and the community at large played a key role in moderating caregiver outcomes. Conclusions: Caregiver wellness and distress are multidimensional and extend beyond the absence or presence of psychological outcomes. Future intervention research should incorporate novel outcome measures that include elements of self-efficacy, preparedness, and adaptation and optimize postdischarge support for family caregivers.

Psychological Dimensions of Palliative Care Consultation: Approaches to Seriously Ill Patients at the End of Life.

Mental health clinicians often hear seriously ill patients ask the unanswerable: Why did this happen? What is the meaning of my suffering? In the inpatient setting, general medical ward, or oncology unit, patients are confronted with their mortality in new, urgent ways. Palliative medicine, or the specialized, comprehensive care of patients facing a life-limiting illness, occupies a unique and liminal space. Although often practiced by clinicians with non-mental health training backgrounds, there exists ample psychological content to be explored in the palliative care encounter. In this article, we present the case of a husband and international businessperson who experienced terminal complications from an advanced stage lung cancer. His illness was not responsive to multiple cancer-directed treatments, and he developed respiratory failure requiring high levels of supplemental oxygen support, from which he was unable to wean. Palliative care consultation was sought with the multiple objectives of ameliorating his severe death anxiety and persistent dyspnea as well as assisting in the clarification of his end-of-life wishes. Our goal with this case presentation and related discussion is to introduce the psychological aspects of palliative medicine to psychiatrists and psychotherapists.

Impact of Confinement in Patients under Long-Term Noninvasive Ventilation during the First Wave of the SARS-CoV-2 Pandemic: A Remarkable Resilience.

BACKGROUND: During the first wave of the SARS-CoV-2 pandemic in Switzerland, confinement was imposed to limit transmission and protect vulnerable persons. These measures may have had a negative impact on perceived quality of care and symptoms in patients with chronic disorders. OBJECTIVES: To determine whether patients under long-term home noninvasive ventilation (LTHNIV) for chronic respiratory failure (CRF) were negatively affected by the 56-day confinement (March-April 2020). METHODS: A questionnaire-based survey exploring mood disturbances (HAD), symptom scores related to NIV (S3-NIV), and perception of health-care providers during confinement was sent to all patients under LTHNIV followed up by our center. Symptom scores and data obtained by ventilator software were compared between confinement and the 56 days prior to confinement. RESULTS: Of a total of 100 eligible patients, 66 were included (median age: 66 years [IQR: 53-74]): 35 (53%) with restrictive lung disorders, 20 (30%) with OHS or SRBD, and 11 (17%) with COPD or overlap syndrome. Prevalence of anxiety (n = 7; 11%) and depressive (n = 2; 3%) disorders was remarkably low. Symptom scores were slightly higher during confinement although this difference was not clinically relevant. Technical data regarding ventilation, including compliance, did not change. Patients complained of isolation and lack of social contact. They felt supported by their relatives and caregivers but complained of the lack of regular contact and information by health-care professionals. CONCLUSIONS: Patients under LTHNIV for CRF showed a remarkable resilience during the SARS-CoV-2 confinement period. Comments provided may be helpful for managing similar future health-care crises.

Psychological Outcomes in Family Members of Patients With Acute Respiratory Failure: Does Inter-ICU Transfer Play a Role?

BACKGROUND: Family members of patients admitted to the ICU experience a constellation of sequelae described as postintensive care syndrome-family. The influence that an inter-ICU transfer has on psychological outcomes is unknown. RESEARCH QUESTION: Is inter-ICU transfer associated with poor psychological outcomes in families of patients with acute respiratory failure? STUDY DESIGN AND METHODS: Cross-sectional observational study of 82 families of patients admitted to adult ICUs (tertiary hospital). Data included demographics, admission source, and outcomes. Admission source was classified as inter-ICU transfer (n = 39) for patients admitted to the ICU from other hospitals and direct admit (n = 43) for patients admitted from the ED or the operating room of the same hospital. We used quantitative surveys to evaluate psychological distress (Hospital Anxiety and Depression Scale [HADS]) and posttraumatic stress (Post-Traumatic Stress Scale; PTSS) and examined clinical, family, and satisfaction factors associated with psychological outcomes. RESULTS: Families of transferred patients travelled longer distances (mean ± SD, 109 ± 106 miles) compared with those of patients directly admitted (mean ± SD, 65 ± 156 miles; P ≤ .0001). Transferred patients predominantly were admitted to the neuro-ICU (64%), had a longer length of stay (direct admits: mean ± SD, 12.7 ± 9.3 days; transferred patients: mean ± SD, 17.6 ± 9.3 days; P < .01), and a higher number of ventilator days (direct admits: mean ± SD, 6.9 ± 8.6 days; transferred: mean ± SD, 10.6 ± 9.0 days; P < .01). Additionally, they were less likely to be discharged home (direct admits, 63%; transferred, 33%; P = .08). In a fully adjusted model of psychological distress and posttraumatic stress, family members of transferred patients were found to have a 1.74-point (95% CI, -1.08 to 5.29; P = .30) higher HADS score and a 5.19-point (95% CI, 0.35-10.03; P = .03) higher PTSS score than those of directly admitted family members. INTERPRETATION: In this exploratory study, posttraumatic stress measured by the PTSS was higher in the transferred families, but these findings will need to be replicated to infer clinical significance.

Post-traumatic stress disorder symptoms after respiratory insufficiency in patients with myasthenia gravis.

To explore posttraumatic stress disorder symptoms (PTSD) after respiratory insufficiency in patients with myasthenia gravis (MG). The investigation was made with 134 adult patients with MG, after respiratory insufficiency, between January 2012 and January 2016 and had a return visit after one year. 134 patients finished this study and 69 patients (51.5%) had PTSD. Anxiety (HADS-A ≥ 8, HADS: Hospital Anxiety and Depression Scale) (OR 2.585,95% CI 1.102-6.061, p = 0.029), and depression (HADS-D ≥ 8) (OR 3.200, 95% CI 1.395-7.342, p = 0.006) were associated with greater probabilities of screening positive for PTSD. Gender, age, intubation, yearly income, marriage, inability to work, number of respiratory insufficiency episodes, education level, Mini-mental state examination (MMSE) (>20), ICU stays, having insurance, and MG-activities of daily living (ADL) (<9) were not significant predictors for PTSD. One year after a respiratory insufficiency episode, patients with PTSD experienced worse anxiety (p = 0.035), depressive disorder (p < 0.001), and 36-Item Short-Form Health Survey (SF-36) showed physical functioning (p = 0.042), role-physical (p = 0.013), social functioning (p = 0.040), and emotional-role (p = 0.034). But there were no differences in ADL, bodily pain, general health and vitality. PTSD in patients with MG is common after a respiratory insufficiency episode; anxiety and depression were both associated with greater probabilities of screening positive for PTSD.

Respiratory impairment impacts QOL in osteogenesis imperfecta independent of skeletal abnormalities.

Respiratory insufficiency is the leading cause death in people with osteogenesis imperfecta (OI). Adults with OI reported that respiratory symptoms negatively impacted psychosocial wellbeing and limited daily physical activities, irrespective of OI type, age, stature, or scoliosis. The impact of respiratory status on quality of life in this population warrants further investigation. PURPOSE: Respiratory insufficiency is the leading cause of mortality in osteogenesis imperfecta (OI), a heterogeneous group of heritable connective tissue disorders characterized by fractures, bone fragility, and scoliosis. There is little research on how respiratory health influences daily life in this population. This study explores the relationship between respiratory function and quality of life in adults with OI. METHODS: One hundred fifty-seven adults with OI completed the St. George's Respiratory Questionnaire (SGRQ) and provided demographic and health information through REDCap. SGRQ scores were compared to reference scores for the general population, and comparisons were made between OI type, presence of scoliosis, stature, and other factors such as age or comorbidities. RESULTS: Average age was 45.87 years (range 19-81). Respondents scored worse on average (32 ± 23) than the normative data (6 ± 1). Those with type I OI scored better than those with type IV (p = 0.002) or type III (p = 0.024). Total scores correlated with age, activity level, assistive device use, and presence of pulmonary or cardiac comorbidities but did not correlate with stature or degree of scoliosis. CONCLUSION: Respiratory symptoms negatively impact both psychosocial wellbeing in the OI population and limit daily physical activity. These limitations occur irrespective of their OI type, age, stature, or scoliosis and reflect the dramatic impact of respiratory status on quality of life for people with OI. Future studies should examine the etiology of respiratory insufficiency in this population so guidelines for management can be established.

Association Between Anxiety and New Organ Failure, Independently of Critical Illness Severity and Respiratory Status: A Prospective Multicentric Cohort Study.

OBJECTIVES: Anxiety results from the anticipation of a threat and might be associated with poor outcome in the critically ill. This study aims at showing that anxiety at admission in critically ill patients is associated with new organ failure over the first 7 days of ICU hospitalization independently of baseline organ failure at admission. DESIGN: Prospective multicenter cohort study. SETTING: Three mixed ICU from April 2014 to December 2017. PATIENTS: Coma-, delirium-, and invasive mechanical ventilation-free patients admitted to the ICU were included. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: "State anxiety" was assessed using the state component of the State-Trait Anxiety Inventory State. Severity of illness was measured using Simplified Acute Physiology Score II and Sequential Organ Failure Assessment scores. Primary endpoint was a composite of occurrence of death or new organ failure in the first 7 days after admission. Three hundred ninety-one patients were included; 159 of 391 women (40.7%); median age 63 years (49-74 yr); median Simplified Acute Physiology Score II 28 (19-37). Two hundred three out of 391 patients (51.9%) reported moderate to severe anxiety (State-Trait Anxiety Inventory State ≥ 40). One hundred two out of 391 patients (26.1%) developed a new organ failure. After adjustment to Simplified Acute Physiology Score II and Sequential Organ Failure Assessment, State-Trait Anxiety Inventory State greater than or equal to 40 was associated with the primary endpoint (odds ratio, 1.94; 95% CI, 1.18-3.18; p = 0.009) and respiratory failure. In post hoc analysis, State-Trait Anxiety Inventory State greater than or equal to 40 was associated with new organ failure independently and notably of respiratory status at admission (dyspnea-Visual Analogic Scale and PaCO2 ≥ 45 mm Hg). CONCLUSIONS: Moderate to severe anxiety at ICU admission is associated with early occurrence of new organ failure in critically ill patients, independently of respiratory status and severity of critical illness. The causality link could be addressed in an interventional trial.

Home mechanical ventilation: quality of life patterns after six months of treatment.

BACKGROUND: It has been shown that home mechanical ventilation improves quality of life, but it has not been widely studied which particular patient groups benefit the most from starting this type of therapy. The purpose of this prospective observational study was to evaluate quality of life change patterns 6 months after initiation of home mechanical ventilation in patients suffering from chronic respiratory failure using patient reported outcomes. METHODS: We enrolled 74 chronic respiratory failure patients starting invasive or noninvasive home mechanical ventilation through the Semmelweis University Home Mechanical Ventilation Program. Quality of life was evaluated at baseline and at 6 months after initiation of home mechanical ventilation using the Severe Respiratory Insufficiency Questionnaire. RESULTS: Overall quality of life showed 10.5% improvement 6 months after initiation of home mechanical ventilation (p < 0.001). The greatest improvement was observed in Respiratory complaint (20.4%, p = 0.015), Sleep and attendant symptoms (19.3%, p < 0.001), and Anxiety related subscales (14.4%, p < 0.001). Interface (invasive versus noninvasive ventilation) was not associated with improvement in quality of life (p = 0.660). Severely impaired patients showed the greatest improvement (CC = -0.328, p < 0.001). Initial diagnosis contributed to the observed change (p = 0.025), with chronic obstructive pulmonary disease and obesity hypoventilation syndrome patients showing the greatest improvement, while amyotrophic lateral sclerosis patients showed no improvement in quality of life. We found that patients who were started on long term ventilation in an acute setting, required oxygen supplementation and had low baseline quality of life, showed the most improvement during the six-month study period. CONCLUSIONS: Our study highlights the profound effect of home mechanical ventilation on quality of life in chronic respiratory failure patients that is indifferent of ventilation interface but is dependent on initial diagnosis and some baseline characteristics, like acute initiation, oxygen supplementation need and baseline quality of life. TRIAL REGISTRATION: This study was approved by and registered at the ethics committee of Semmelweis University (SE TUKEB 251/2017; 20th of December, 2017).

Proning in Non-Intubated (PINI) in Times of COVID-19: Case Series and a Review.

It has been well known for decades that prone positioning (PP) improves oxygenation. However, it has gained widespread acceptance only in the last few years since studies have shown significant survival benefit. Many centers have established prone ventilation in their treatment algorithm for mechanically ventilated patients with severe acute respiratory distress syndrome (ARDS). Physiologically, PP should also benefit awake, non-intubated patients with acute hypoxemic respiratory failure. However, proning in non-intubated (PINI) patients did not gain any momentum until a few months ago when the Coronavirus disease 2019 (COVID-19) pandemic surged. A large number of sick patients overwhelmed the health care system, and many centers faced a dearth of ventilators. In addition, outcomes of patients placed on mechanical ventilation because of COVID-19 infection have been highly variable and often dismal. Hence, increased focus has shifted to using various strategies to prevent intubation, such as PINI. There is accumulating evidence that PINI is a low-risk intervention that can be performed even outside intensive care unit with minimal assistance and may prevent intubation in certain patients with ARDS. It can also be performed safely at smaller centers and, therefore, may reduce the patient transfer to larger institutions that are overwhelmed in the current crisis. We present a case series of 2 patients with acute hypoxemic respiratory failure who experienced significant improvements in oxygenation with PP. In addition, the physiology of PP is described, and concerns such as proning in obese and patient's anxiety are addressed; an educational pamphlet that may be useful for both patients and health care providers is provided.

Analysis of Optimal Health-Related Quality of Life Measures in Patients Waitlisted for Lung Transplantation.

Background: Improving health-related quality of life (HRQL) is an important goal of lung transplantation, and St. George's Respiratory Questionnaire (SGRQ) is frequently used for assessing HRQL in patients waitlisted for lung transplantation. We hypothesized that chronic respiratory failure (CRF)-specific HRQL measures would be more suitable than the SGRQ, considering the underlying disease and its severity in these patients. Methods: We prospectively collected physiological and patient-reported data (HRQL, dyspnea, and psychological status) of 199 patients newly registered in the waiting list of lung transplantation. CRF-specific HRQL measures of the Maugeri Respiratory Failure Questionnaire (MRF) and Severe Respiratory Insufficiency Questionnaire (SRI) were assessed in addition to the SGRQ. Results: Compared to the MRF-26 and SRI, the score distribution of the SGRQ was skewed toward the worse ends of the scale. All domains of the MRF-26 and SRI were significantly correlated with the SGRQ. Multiple regression analyses to investigate factors predicting each HRQL score indicated that dyspnea and psychological status accounted for 12% to 28% of the variance more significantly than physiological measures did. The MRF-26 Total and SRI Summary significantly worsened from the baseline to 1 year (p < 0.001 and p < 0.001 and p < 0.001 and. Conclusions: The MRF-26 and SRI are valid, discriminative, and responsive in patients waitlisted for lung transplantation. In terms of the score distribution and responsiveness, CRF-specific measures may function better in their HRQL assessment than the currently used measures do.

Validation of the Finnish severe respiratory insufficiency questionnaire.

INTRODUCTION: Chronic respiratory insufficiency impacts patients' lives and reduces quality of life. The Severe Respiratory Insufficiency (SRI) questionnaire examines health-related quality of life and is designed specifically for patients receiving home mechanical ventilation (HMV) for chronic respiratory failure (CRF). OBJECTIVES: The aim of this study was to validate the Finnish version of the SRI and study its reproducibility in patients with CRF. METHODS: Our 74 patients receiving HMV or long-term oxygen treatment for CRF or both completed the SRI and St George's Respiratory questionnaires (SGRQ) three times (at baseline, and then one week and one month later). Reliability and validity of the questionnaires was analysed with Cronbach's alpha and intraclass correlation coefficient. Patients were prospectively followed up for 5 years, with data collected on their use of hospital services and mortality. RESULTS: Cronbach's alpha in the SRI ranged from 0.67 to 0.88 and was >0.7 on all subscales except the "attendant symptoms and sleep". On four subscales, Cronbach's alpha was >0.8, and on the summary scale, 0.95. The SRI showed high correlation with SGRQ. Both tests showed good reproducibility. During the 5-year follow-up, 27 (36%) patients died. CONCLUSIONS: The Finnish SRI proved valid, reliable and reproducible. Its psychometric properties were good and similar to those of the original questionnaire and of other validation studies.

What can we learn from patients to improve their non-invasive ventilation experience? 'It was unpleasant; if I was offered it again, I would do what I was told'.

OBJECTIVES: Non-invasive ventilation (NIV) is widely used as a lifesaving treatment in acute exacerbations of chronic obstructive pulmonary disease; however, little is known about the patients' experience of this treatment. This study was designed to investigate the experiences and perceptions of participants using NIV. The study interprets the participants' views and explores implications for clinical practice. METHODS: Participants with respiratory failure requiring NIV were interviewed 2 weeks after discharge. A grounded theory methodology was used to order and sort the data. Theoretical sufficiency was achieved after 15 participants. RESULTS: Four themes emerged from the data: levels of discomfort with NIV, cognitive experiences with NIV, NIV as a life saver and concern for others. NIV was uncomfortable for participants and affected their cognition; they still reported considering NIV as a viable option for future treatment. Participants described a high level of trust in healthcare professionals and delegated decision-making to them regarding ongoing care. CONCLUSIONS: This study provides insights into ways clinicians could improve the physical experience for patients with NIV. It also identifies a lack of recall and delegation of decision-making, highlighting the need for clinical leadership to advocate for patients.

Respiratory function and cognitive profile in amyotrophic lateral sclerosis.

BACKGROUND AND PURPOSE: Amyotrophic lateral sclerosis (ALS) is increasingly recognized as a multisystem disorder with 30%-50% of patients exhibiting cognitive impairment. The pathophysiological mechanisms of cognitive dysfunction are probably multifactorial although hypoventilation secondary to respiratory dysfunction may contribute to cognitive decline. The current study aimed to identify the relationship between respiratory function in ALS patients and the presence and degree of cognitive impairment. METHODS: Amyotrophic lateral sclerosis patients were prospectively recruited from a multidisciplinary ALS clinic. Baseline clinical assessments including respiratory function as assessed by spirometry were recorded with forced vital capacity (FVC) ≤ 75% considered to be reduced respiratory function. Cognitive testing was performed utilizing the Addenbrooke's Cognitive Examination (ACE) and the Mini-Mental State Examination (MMSE). RESULTS: From a cohort of 100 ALS patients, 48% were categorized as having impaired respiratory function (FVC = 58.24% ± 2.15%) whilst 52% had normal function (88.65% ± 1.27%). Compared to the group with normal respiratory function (ACE 90.68 ± 0.89, MMSE 28.22 ± 0.21), patients with respiratory dysfunction had significantly reduced cognitive function (ACE 86.83 ± 1.5, P = 0.025; MMSE 26.29 ± 0.45, P = 0.029). Furthermore, subscores demonstrated significant differences between the groups with respect to domains in memory (P = 0.003) and attention (P = 0.05) with a trend observed in fluency (P = 0.082). There was a significant correlation between patient baseline FVC and ACE scores as well as between FVC and memory and fluency subscores (P < 0.01). CONCLUSION: Amyotrophic lateral sclerosis patients with respiratory compromise were more likely to develop reduced cognitive function. In addition to improving physical function, it remains plausible that non-invasive ventilation may alter the progression of cognitive impairment in ALS patients and potentially improve overall quality of life and carer burden.

The current use of telehealth in ALS care and the barriers to and facilitators of implementation: a systematic review.

Objective: We aimed to provide an overview of telehealth used in the care for patients with amyotrophic lateral sclerosis (ALS), and identify the barriers to and facilitators of its implementation. Methods: We searched Pubmed and Embase to identify relevant articles. Full-text articles with original research reporting on the use of telehealth in ALS care, were included. Data were synthesized using the Consolidation Framework for Implementation Research. Two authors independently screened articles based on the inclusion criteria. Results: Sixteen articles were included that investigated three types of telehealth: Videoconferencing, home-based self-monitoring and remote NIV monitoring. Telehealth was mainly used by patients with respiratory impairment and focused on monitoring respiratory function. Facilitators for telehealth implementation were a positive attitude of patients (and caregivers) toward telehealth and the provision of training and ongoing support. Healthcare professionals were more likely to have a negative attitude toward telehealth, due to the lack of personal evaluation/contact and technical issues; this was a known barrier. Other important barriers to telehealth were lack of reimbursement and cost-effectiveness analyses. Barriers and facilitators identified in this review correspond to known determinants found in other healthcare settings. Conclusions: Our findings show that telehealth in ALS care is well-received by patients and their caregivers. Healthcare professionals, however, show mixed experiences and perceive barriers to telehealth use. Challenges related to finance and legislation may hinder telehealth implementation in ALS care. Future research should report the barriers and facilitators of implementation and determine the cost-effectiveness of telehealth.

Do-not-intubate orders in patients with acute respiratory failure: a systematic review and meta-analysis.

PURPOSE: To assess the rates and variability of do-not-intubate orders in patients with acute respiratory failure. METHODS: We conducted a systematic review of observational studies that enrolled adult patients with acute respiratory failure requiring noninvasive ventilation or high-flow nasal cannula oxygen from inception to 2019. RESULTS: Twenty-six studies evaluating 10,755 patients were included. The overall pooled rate of do-not-intubate orders was 27%. The pooled rate of do-not-intubate orders in studies from North America was 14% (range 9-22%), from Europe was 28% (range 13-58%), and from Asia was 38% (range 9-83%), p = 0.001. Do-not-intubate rates were higher in studies with higher patient age and in studies where do-not-intubate decisions were made without reported patient/family input. There were no significant differences in do-not-intubate orders according to illness severity, observed mortality, malignancy comorbidity, or methodological quality. Rates of do-not-intubate orders increased over time from 9% in 2000-2004 to 32% in 2015-2019. Only 12 studies (46%) reported information about do-not-intubate decision-making processes. Only 4 studies (15%) also reported rates of do-not-resuscitate. CONCLUSIONS: One in four patients with acute respiratory failure (who receive noninvasive ventilation or high-flow nasal cannula oxygen) has a do-not-intubate order. The rate of do-not-intubate orders has increased over time. There is high inter-study variability in do-not-intubate rates-even when accounting for age and illness severity. There is high variability in patient/family involvement in do-not-intubate decision making processes. Few studies reported differences in rates of do-not-resuscitate and do-not-intubate-even though recovery is very different for acute respiratory failure and cardiac arrest.

Hemidysgeusia, phantosmia and respiratory arrest: a case of CLIPPERS.

A 56-year-old man presented with a relapse of likely chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids (CLIPPERS) after a reduction of steroid dose. MRI demonstrated new perivascular FLuid-Attenuated Inversion Recovery (FLAIR) signal hyperintensity involving the dorsal pontomedullary junction and progressing inferiorly into the dorsal medulla oblongata. His admission to hospital was complicated by a respiratory arrest.

Outcome of Frail Do-Not-Intubate Subjects With End-Stage Chronic Respiratory Failure and Their Opinion of Noninvasive Ventilation to Reverse Hypercapnic Coma.

BACKGROUND: The use of noninvasive ventilation (NIV) in the emergency setting to reverse hypercapnic coma in frail patients with end-stage chronic respiratory failure and do-not-intubate orders remains a questionable issue given the poor outcome of this vulnerable population. We aimed to answer this issue by assessing not only subjects' outcome with NIV but also subjects' point of view regarding NIV for this indication. METHODS: A prospective observational case-control study was conducted in 3 French tertiary care hospitals during a 2-y period. Forty-three individuals who were comatose (with pH < 7.25 and PaCO2 > 100 mm Hg at admission) were compared with 43 subjects who were not comatose and who were treated with NIV for acute hypercapnic respiratory failure. NIV was applied by using the same protocol in both groups. They all had a do-not-intubate order and were considered vulnerable individuals with end-stage chronic respiratory failure according to well-validated scores. RESULTS: NIV yielded similar outcomes in the 2 groups regarding in-hospital mortality (n = 12 [28%] vs n = 12 [28%] in the noncomatose controls, P > .99) and 6-month survival (n = 28 [65%] vs n = 22 [51%] in the noncomatose controls, P = .31). Despite poor quality of life scores (21.5 ± 10 vs 31 ± 6 in the awakened controls, P = .056) as assessed by using the VQ11 questionnaire 6 months to 1 y after hospital discharge, a large majority of the survivors (n = 23 [85%]) would be willing to receive NIV again if a new episode of acute hypercapnic respiratory failure occurs. CONCLUSIONS: In the frailest subjects with supposed end-stage chronic respiratory failure that justifies treatment limitation decisions, it is worth trying NIV when acute hypercapnic respiratory failure occurs, even in the case of extreme respiratory acidosis with hypercapnic coma at admission.

The Hand-Held Fan and the Calming Hand for People With Chronic Breathlessness: A Feasibility Trial.

CONTEXT: The battery-operated hand-held fan ("fan") and the Calming Hand (CH), a cognitive strategy, are interventions used in clinical practice to relieve chronic breathlessness. OBJECTIVE: To test the feasibility of a Phase III randomized controlled trial (RCT) evaluating the impact of the fan and/or CH compared with exercise advice alone for the relief of chronic breathlessness due to respiratory conditions. METHODS: A single-site, feasibility "2 × 2" factorial, nonblinded, mixed-methods RCT was performed. Participants randomly allocated to four groups: fan + exercise advice, CH + exercise advice, fan + CH + exercise advice, and exercise advice alone. Measures included recruitment, acceptability, data quality and study outcomes (baseline and day 28), modified Incremental Shuttle Walk Test (mISWT), recovery time from exertion-induced breathlessness, life-space questionnaire, General Self-Efficacy Scale, and breathlessness numerical rating scales. Willing participants and carers were interviewed at study end. RESULTS: Recruitment/acceptability/data completion: 53 people were screened, 40 randomized and completed (mean age 72 years (SD 9.8), 70% male). There were few missing data (mISWT, n = 2). Recovery time (seconds) from exertion-induced breathlessness showed most improvement for the fan; mean reduction from baseline -33.5 vs. CH mean increase from baseline 5.7. This represents a recovery speed at day 28 (-20.4%) faster for the fan vs. 4.1% slower for the CH. Qualitative data indicated participants valued the faster recovery and identified the fan as a useful "medical" device but found the CH unhelpful. CONCLUSION: A Phase III RCT is feasible. Mixed-methods data synthesis supports recovery time as a novel, meaningful outcome measure.