Home Mechanical Ventilation Patients Research Articles

Development and pilot-testing of an evidence-based quality indicator set for home mechanical ventilation care: the OVER-BEAS project

BackgroundThe number of patients depending on home mechanical ventilation (HMV) has increased substantially in Germany in recent years. These patients receive long-term care in different nursing facilities (nursing home, shared living community, private home). However, there are limited data available on the quality of care of HMV patients. The aim of the OVER-BEAS project was to identify quality indicators (QIs) of HMV care using an evidence-based approach.MethodsA multidisciplinary board consisting of professionals and experts of HMV provision compiled a set of QIs between March and September 2019. In a structured, transparent process a set of QIs covering structures, processes and outcome of HMV patient’s care were proposed and evaluated based on the best available evidence. QIs were defined as relevant, reliable and valid measurements of the quality of HMV care and furthermore to be comprehensive and applicable in practice.ResultsThe experts proposed 40 QIs and consented a final set of 26 QIs. Based on the final set, questionnaires to document the QIs were developed: (1) to assess the quality and describe the structure of the nursing facility; and (2) to gather information on patient-related processes and outcomes. The feasibility of the questionnaires was tested in 5 nursing facilities treating HMV patients. The remarks from the nursing specialists were categorised in three groups: (1) term missing accuracy, (2) problem of understanding, and (3) not documented or documented elsewhere. Mean documentation time by the nursing specialists for one patient was 15 min. Based on this feedback, the questionnaires were finalised.ConclusionsWe proposed a set of QIs relating to long-term HMV care and developed two questionnaires to collect this information. In a pilot study, we found the set of questionnaires to be feasible in assessing the quality of HMV care according to current evidence. The development of standardised evidence-based QIs to evaluate HMV care is a step towards implementing a standardised quality assurance program to document the quality of care of HMV patients.

Acceptability of the Long-Term In-Home Ventilator Engagement virtual intervention for home mechanical ventilation patients during the COVID-19 pandemic: A qualitative evaluation.

Clinical management of ventilator-assisted individuals (VAIs) was challenged by social distancing rules during the COVID-19 pandemic. In May 2020, the Long-Term In-Home Ventilator Engagement (LIVE) Program was launched in Ontario, Canada to provide intensive digital care case management to VAIs. The purpose of this qualitative study was to explore the acceptability of the LIVE Program hosted via a digital platform during the COVID-19 pandemic from diverse perspectives. We conducted a qualitative descriptive study (May 2020-April 2021) comprising semi-structured interviews with participants from eight home ventilation specialty centers in Ontario, Canada. We purposively recruited patients, family caregivers, and providers enrolled in LIVE. Content analysis and the theoretical concepts of acceptability, feasibility, and appropriateness were used to interpret findings. A total of 40 individuals (2 VAIs, 18 family caregivers, 20 healthcare providers) participated. Participants described LIVE as acceptable as it addressed a longstanding imperative to improve care access, ease of use, and training provided; feasible for triaging problems and sharing information; and appropriate for timeliness of provider responses, workflows, and perceived value. Negative perceptions of acceptability among healthcare providers concerned digital workload and fit with existing clinical workflows. Perceived benefits accorded to LIVE included enhanced physical and psychological safety in the home, patient-provider relations, and VAI engagement in their own care. Study findings identify factors influencing the LIVE Program's acceptability by patients, family caregivers, and healthcare providers during pandemic conditions including enhanced access to care, ease of case management triage, and VAI safety. Findings may inform the implementation of digital health services to VAIs in non-pandemic circumstances.

International Survey of the Tools Used for Assessment, Monitoring and Management of Home Mechanical Ventilation Patients

Background: There are limited data reporting diagnostic practices, compared to clinical guidelines, for patients with chronic respiratory failure requiring home mechanical ventilation (HMV). There are no data detailing the current use of downloaded physiological monitoring data in day-to-day clinical practice during initiation and follow up of patients on HMV. This survey reports clinicians’ practices, with a specific focus on the clinical approaches employed to assess, monitor and manage HMV patients. Methods: A web-based international survey was open between 1 January and 31 March 2023. Results: In total, 114 clinicians responded; 84% of the clinicians downloaded the internal physiological ventilator data when initiating and maintaining HMV patients, and 99% of the clinicians followed up with patients within 3 months. Adherence, leak and the apnea-hypopnea index were the three highest rated items. Oxygen saturation was used to support a diagnosis of nocturnal hypoventilation and was preferred over measurements of carbon dioxide. Furthermore, 78% of the clinicians reviewed data for the assessment of patient ventilator asynchrony (PVA), although the confidence reported in identifying certain PVAs was reported as unconfident or extremely unconfident. Conclusions: This survey confirmed that clinical practice varies and often does not follow the current guidelines. Despite PVA being of clinical interest, its clinical relevance was not clear, and further research, education and training are required to improve clinical confidence.

Quality of Life and Stress Levels in Patients under Home Mechanical Ventilation: What Can We Do to Improve Functioning Patients at Home? A Survey Study.

Home mechanical ventilation (HMV) is becoming more widely available in many countries. The aim of this study was to measure the health-related quality of life and stress levels of patients ventilated mechanically at home. The relation between quality of life and stress levels was investigated including multiple regression analysis. 100 patients treated with HMV in Poland were surveyed with the WHOQOL-BREF questionnaire and Perceived Stress Scale (PSS-10). 26% of patients assessed their quality of life as bad or very bad and 34% as good or very good. Stress levels measured with PSS-10 Scale were high level. For the group of patients with neurological disorders, stress levels were significantly higher than for the group of patients with pulmonological disorders. The higher the stress levels of patients, the lower the quality of life in particular domains. Improving the living conditions of HMV patients can influence improving their quality of life.

Exploring red cell distribution width as a biomarker for treatment efficacy in home mechanical ventilation

BackgroundWith the growing practice of home mechanical ventilation, there is a need to identify biological markers for adequate follow-up. Red cell distribution width (RDW) is a promising candidate because it is convenient, objective and may reflect treatment effect over a long period of time. The aim of this study was to explore the possible role of RDW as a marker for home mechanical ventilation in real-life, unselected chronic respiratory patient populations.MethodsFirst, we identified characteristic RDW values for mixed case, unselected chronic respiratory failure and home mechanical ventilated patients through retrospective review within our institutional database. Next, we conducted a prospective observational study to identify RDW changes during the first six months of optimized home mechanical ventilation treatment. Adult patients starting home mechanical ventilation were included. Factors affecting RDW change during the first 6 months of treatment were analysed.ResultsRDW was elevated in both chronic respiratory failure and home mechanical ventilation patients compared to healthy individuals in the retrospective review. In the prospective study of 70 patients, we found that 55.4% of patients starting home mechanical ventilation have abnormal RDW values which are reduced from 14.7 (IQR = 13.2–16.2)% to 13.5 (IQR = 13.1–14.6)% during the first 6 months of HMV treatment (p < 0.001). RDW improvement correlates with improvement in self-reported health-related quality of life and sleepiness scale scores, as well as physical functional status during the same time frame. RDW proved to be a comparable marker to other parameters traditionally used to evaluate treatment efficacy.ConclusionsRDW is elevated in chronic respiratory failure patients and is significantly reduced in the first six months of optimized home mechanical ventilation. Although further research is needed to verify if RDW change reflects outcome and how comorbidities influence RDW values, our results suggest that RDW is a promising marker of home mechanical ventilation efficacy.Trial registration This study was approved by and registered at the ethics committee of Semmelweis University (TUKEB 250/2017 and TUKEB 250-1/2017, 20th of December 2017 and 1st of October 2019).

Hygiene management for long-term ventilated persons in the home health care setting: a scoping review

BackgroundEvidence and recommendations for hygiene management in home mechanical ventilation (HMV) are rare. In Germany, few regionally limited studies show poor hygiene management or a lack of its implementation. This scoping review of international literature identified the evidence in hygiene management for ventilated patients in the home care setting which has to be implemented for infection prevention and control.MethodsA review of international literature was conducted in CINAHL, PubMed and Web of Science. The search focused on four key domains: HMV, hygiene management, home care setting, and methicillin-resistant Staphylococcus aureus (MRSA). Data of included studies were extracted using a data charting sheet. Extracted data were assigned to the categories (1) study description, (2) setting and participants, and (3) hygiene management.ResultsFrom 1,718 reviewed articles, n = 8 studies met inclusion criteria. All included studies had a quantitative study design. The approaches were heterogeneous due to different settings, study populations and types of ventilation performed. Regarding aspects of hygiene management, most evidence was found for infectious critical activities (n = 5), quality management for hygiene (n = 4), and training and education (n = 4). This review identified research gaps concerning kitchen hygiene, relatives and visitors of HMV patients, and waste management (n = 0).DiscussionOverall evidence was rather scarce. Consequently, this review could not answer all underlying research questions. No evidence was found for measures in hygiene management relating to ventilated patients’ relatives. Evidence for kitchen hygiene, waste management and interaction with relatives is available for inpatient care settings. However, this may not be transferable to outpatient care. Binding legal requirements and audits may help regulate the implementation of HMV hygiene measures.ConclusionInfection control programmes included qualified personnel, hygiene plans, and standards for MRSA and multidrug-resistant organisms (MDRO). The appropriateness of hygiene management measures for outpatient care is the basis for their application in practice.

Cost-Utility Analysis of Home Mechanical Ventilation in Patients with Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis is a disease with rapid progression. The use of mechanical ventilation helps to manage symptoms and delays death. Use in a home environment could reduce costs and increase quality of life. The aim of this study is a cost–utility analysis of home mechanical ventilation in adult patients with amyotrophic lateral sclerosis from the perspective of healthcare payers in the Czech Republic. The study evaluates home mechanical ventilation (HMV) and mechanical ventilation (MV) in a healthcare facility. A Markov model was compiled for evaluation in a timeframe of 10 years. Model parameters were obtained from the literature and opinions of experts from companies dealing with home care and home mechanical ventilation. The cost–utility analysis was carried out at the end of the study and results are presented in incremental cost–utility ratio (ICUR) using quality-adjusted life-years. Uncertainty was assessed by one-way sensitivity analysis and scenario analysis. The cumulative costs of HMV are CZK 1,877,076 and the cumulative costs of the MV are CZK 7,386,629. The cumulative utilities of HMV are 12.57 quality-adjusted life year (QALY) and the cumulative utilities of MV are 11.32 QALY. The ICUR value is CZK-4,403,259. The results of this study suggest that HMV is cost effective.

Long-term adherence to home mechanical ventilation: a 10-year retrospective, single-centre cohort study.

BackgroundSleep-disordered breathing (SBD) can be associated with hypercapnic respiratory failure (HRF). Home Mechanical Ventilation (HMV) is the preferred long-term treatment for patients with chronic HRF. We reviewed the database of a large tertiary referral centre for HMV to study the long-term adherence to HMV in chronic hypercapnic patients.MethodsData on adherence and characteristics of patients who received HMV for the treatment of SDB were collected over a decade using electronic patient records. The primary outcome parameter in this study was annual non-adherence rate (patients with HMV usage of <4 hours/night in the service divided by the number of all new patients of the same year), secondary outcomes were patients’ characteristics and reasons for low adherence. HMV adherence clinics were established to improve uptake.ResultsTwo thousand and two hundred twenty-eight patients with HRF were under active follow-up on HMV at the end of the recording period. In contrast, a total of 1,900 patients had their HMV contracts terminated over the course of a decade (due to non-adherence, transfer to other services or death). Out of those, 222 patients {62 [52–72] years, body-mass index, BMI 40 [35–43] kg/m2, 58.1% male, Epworth Sleepiness Scale, ESS 9 [4–15] points, 4% oxygen desaturation index, 4%ODI 32 [20–71] × hour−1, TcCO2 6.6 [6.0–7.2] kPa} met the non-adherence criteria (nocturnal usage 0–4 hours). The annual non-adherence rate was 25.5% of all new setups in 2010, and declined to 3.4% in 2019 (relative reduction of 86%, P<0.001). Patients with Obstructive Sleep Apnoea/Obesity Hypoventilation Syndrome (58.2%), Neuromuscular Diseases (NMD) (26.8%) and COPD (13.6%) accounted for most cases of this non-adherent cohort. The vast majority of the patients (96.1%) were established on full-face masks. In 23.4% of patients, substantial weight loss (>10%) was the most common reason for low adherence; general displeasure (21.3%), uncontrolled symptoms (12.8%), claustrophobia (6.7%), mood (4.8%) and mask intolerance (4.3%) caused problems as well.ConclusionsNon-adherence to HMV in patients with chronic HRF can affect significant proportions of patients. However, the non-adherent rate substantially decreases when individual treatment solutions are offered in multi-disciplinary clinics.

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

BackgroundIt 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.MethodsWe 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.ResultsOverall 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.ConclusionsOur 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 registrationThis study was approved by and registered at the ethics committee of Semmelweis University (SE TUKEB 251/2017; 20th of December, 2017).

Quality of life and life satisfaction are severely impaired in patients with long-term invasive ventilation following ICU treatment and unsuccessful weaning

BackgroundHealth-related quality of life (HRQL), life satisfaction, living conditions, patients’ attitudes towards life and death, expectations, beliefs and unmet needs are all poorly understood aspects associated with patients receiving invasive home mechanical ventilation (HMV) following ICU treatment and unsuccessful weaning. Therefore, the present study aimed to assess (1) HRQL, (2) life satisfaction and (3) patients’ perspectives on life and death associated with invasive HMV as the consequence of unsuccessful weaning.ResultsPatients undergoing invasive HMV with full technical supply and maximal patient care were screened over a 1-year period and assessed in their home environment. The study comprised the following: (1) detailed information on specific aspects of daily life, (2) self-evaluation of 23 specific daily life aspects, (3) HRQL assessment using the Severe Respiratory Insufficiency Questionnaire, (4) open interviews about the patient’s living situation, HRQL, unsolved problems, treatment options, dying and the concept of an afterlife. Out of 112 patients admitted to a specialized weaning centre, 50 were discharged with invasive HMV and 25 out of these (14 COPD and 11 neuromuscular patients) were ultimately enrolled. HRQL and life satisfaction were severely impaired, despite maximal patient care and full supply of technical aids. The most important areas of dissatisfaction identified were mobility, communication, social contact and care dependency. Importantly, 32% of patients would have elected to die in hindsight rather than receive invasive HMV.ConclusionsDespite maximal patient care and a full supply of technical aids, both HRQL and life satisfaction are severely impaired in many invasive HMV patients who have failed prolonged weaning. These findings raise ethical concerns about the use of long-term invasive HMV following unsuccessful weaning.

'I need complete trust in nurses' - home mechanical ventilated patients' perceptions of safety.

Although home care has advanced over the last few decades, little research on patient safety has been carried out in this setting. Furthermore, it is unclear how patients perceive their situation and safety. The insiders' views might be especially relevant for technology-dependent individuals, such as users of home mechanical ventilation (HMV). The aim of this study was to examine how HMV patients perceive their situation and what makes them feel safe or unsafe. Explorative qualitative study. Data were collected in two regions in Germany between April and December 2014 by means of semi-structured interviews with 21 HMV patients. Thematic analysis was used to analyse data. Three themes emerged: the meaning of an interpersonal relationship between the nurse and HMV patient is expressed in the theme Being familiar - Having trust. The importance of the attentiveness of nurses for the patients' feeling of safety is described in the theme Being able to communicate - Being noticed. The theme Experiencing continuity - Feeling presence points to the organisational dimension of HMV care provision. The interpersonal nurse-patient relationship plays a key role in promoting HMV patients' feeling of safety. Thus, HMV patients have a relational approach to safety. In order to enhance the patients' feeling of safety, nurses should strive to develop a trusting relationship with patients and demonstrate their presence and attentiveness. Regarding the provision of care, competent and continuous care should be made a priority.

Prognostic value of nocturnal hypoventilation in neuromuscular patients

In neuromuscular disease (NMD) patients, current guidelines recommend the initiation of home mechanical ventilation (HMV) in case of daytime hypercapnia or nocturnal desaturation as an indirect sign of hypoventilation. Transcutaneous capno-oximetry (TcCO2) enables the direct assessment of nocturnal hypercapnia; however the best cut-off value remains to be defined. We aimed to compare the prognostic value of several published definitions of nocturnal hypercapnia in a cohort of NMD patients. All consecutive TcCO2 recordings performed between 2010 and 2014 in unventilated adult NMD patients in a tertiary reference centre were retrospectively collected. Initiation of HMV and mortality were collected as outcomes of interest. 124 patients with normal daytime blood gazes were analysed (median age 39 [IQR 31–55] years; vital capacity 61% [43–82] of predicted). The prevalence of nocturnal hypercapnia ranged from 3% to 44%, depending on the definition. Over a median follow-up duration of 2.5 years [IQR 1.6–4.1], HMV was initiated for 51 patients, whilst 4 patients died. Nocturnal peak TcCO2 ≥49 mmHg was the best predictor of HMV initiation in the follow-up, being associated with a hazard ratio of 2.6 [95% CI 1.4–4.6] in a multivariate analysis adjusting for lung function parameters. Nocturnal TcCO2 identifies NMD patients at risk for subsequent need for HMV in the following few years, who were not identified by daytime blood gases or nocturnal oximetry. As a consequence, peak nocturnal TcCO2 ≥49 mmHg should be considered as one of the criteria to start HMV in patients with NMDs, along with symptoms of hypoventilation, daytime hypercapnia, abnormal nocturnal oximetry results, and a diminished level of forced vital capacity.

Home mechanical ventilation patients: a retrospective survey to identify level of burden in real life

Home care for patients under home mechanical ventilation (HMV) may cause dramatic physical and economic burden in addition to the burden of time on family/caregivers and health care service (HCS) with difficult resource allocation decision-making. Our aims were: 1. To identify conditions causing major care burden in managing HMV patients according to family and payer's perspectives related to characteristics of the disease, dependency and accessibility; and 2. To find, if any, differences among diseases. A questionnaire was sent to eight pulmonary centres to identify factors connected with the greater care burden. Retrospective data of 792 patients still alive and in HMV was reviewed. Compared to neuromuscular disorders (NM) and chest wall deformities, the COPD group have presented a statistically greater number of hospitalisations/yr (1.37 +/- 0.77), greater length of stay (13 +/- 10 days), higher number of outpatient visits/yr (2.55 +/- 1.73) or emergency room accesses/yr (0.74 +/- 1.08). Patients with NM diseases need more home care. The prevalence of one, two and three among five selected burden criteria (needs of MV > 12 hrs/day, tracheotomy, high dependency, distance from hospital, frequent hospitalisations) was respectively 19%, 30% and 33% of the cases; the NM was the group most represented. In HMV patients: 1. underlying disease, level of their dependency, hours spent under MV, presence of tracheotomy, home distance from hospital, hospital accesses are the causes of major care burden; and 2. as a novelty we have demonstrated that more than fifty percent of them present two or three contemporaneous criteria selected as care burden, being NM and COPD patients the most representative group necessitating of family's and HCS's care respectively.

Complementary Home Mechanical Ventilation Techniques: SEPAR Year 2014

This is a review of the different complementary techniques that are useful for optimizing home mechanical ventilation (HMV).Airway clearance is very important in patients with HMV and many patients, particularly those with reduced peak cough flow, require airway clearance (manual or assisted) or assisted cough techniques (manual or mechanical) and suctioning procedures, in addition to ventilation.In the case of invasive HMV, good tracheostomy cannula management is essential for success.HMV patients may have sleep disturbances that must be taken into account. Sleep studies including complete polysomnography or respiratory polygraphy are helpful for identifying patient-ventilator asynchrony.Other techniques, such as bronchoscopy or nutritional support, may be required in patients on HMV, particularly if percutaneous gastrostomy is required.Information on treatment efficacy can be obtained from HMV monitoring, using methods such as pulse oximetry, capnography or the internal programs of the ventilators themselves.Finally, the importance of the patient's subjective perception is reviewed, as this may potentially affect the success of the HMV.

Técnicas complementarias a la ventilación mecánica domiciliaria. Año SEPAR 2014

This is a review of the different complementary techniques that are useful for optimizing home mechanical ventilation (HMV).Airway clearance is very important in patients with HMV and many patients, particularly those with reduced peak cough flow, require airway clearance (manual or assisted) or assisted cough techniques (manual or mechanical) and suctioning procedures, in addition to ventilation.In the case of invasive HMV, good tracheostomy cannula management is essential for success.HMV patients may have sleep disturbances that must be taken into account. Sleep studies including complete polysomnography or respiratory polygraphy are helpful for identifying patient-ventilator asynchrony.Other techniques, such as bronchoscopy or nutritional support, may be required in patients on HMV, particularly if percutaneous gastrostomy is required.Information on treatment efficacy can be obtained from HMV monitoring, using methods such as pulse oximetry, capnography or the internal programs of the ventilators themselves.Finally, the importance of the patient's subjective perception is reviewed, as this may potentially affect the success of the HMV.

P230 Facilitating End-Of-Life Discussions in Users of Home Mechanical Ventilation That Have a Life-Limiting Neuromuscular Disease

Introduction and ObjectivesThere are many individuals living in the United Kingdom with a neuromuscular disease which will cause their death. Many use home mechanical ventilation (HMV). Discussing end-of-life care with...

Home mechanical ventilation difficulties in the last 3 months of life as reported by caregivers

In this pilot study, we assessed difficulties reported by caregivers of patients under home mechanical ventilation (HMV) during the last 3 months of life. We submitted a post mortem 14-item questionnaire to the main caregiver of all patients who died between 1 April 2000 and 30 September 2005 after having followed an HMV program in 11 Respiratory Units. We explored three specific factors: difficulties with use of oxygen and ventilator use, presence of tracheostomy, and organizational relation between home company and family. A total of 168 out of 174 questionnaires were collected. Minimal differences were found among diseases (chronic obstructive pulmonary disease, chest wall disease, amyotrophic lateral sclerosis and neuromuscular diseases) for most of the tested parameters. Time spent under mechanical ventilation (MV) (p = 0.024), oxygen supply need (p = 0.004), tracheostomy change necessity (p = 0.037), disposable materials (p = 0.037) and emergency call number availability from the home company (p = 0.001) were statistically different among groups. Only 15 % of caregivers had severe technical problems with the ventilator; the most frequent problem was ventilator malfunction. Suction problems, cuff rupture, tracheal decubitus, and pain were the major side effects in 20 % of tracheostomized patients. None had a tracheocannula dislocation. Family satisfaction about home care company services was, in general, very high, as well as for its prompt intervention. Family reported an extra cost increase in 30 % of the cases. In the majority of the cases, a pulmonologist was involved for problem resolution. As reported by caregivers and generally irrespective of diagnosis, caring for long-term HMV patients during their last 3 months of life was accompanied by minimal difficulties using ventilators and minimal need for tracheostomy assistance. Increased equipment needs and costs were relevant and satisfaction with the service received from home company high. These data, from a pilot descriptive study, indicate that specific studies of the impact of patient care on caregivers are warranted.

Withdrawal of Invasive Home Mechanical Ventilation in Patients with Advanced Amyotrophic Lateral Sclerosis: Ten Years of Danish Experience

Due to the growing use of home mechanical ventilation in amyotrophic lateral sclerosis (ALS), physicians are increasingly confronted with patients seeking discontinuation of therapy. Yet there are few systematic investigations of the withdrawal of invasive home mechanical ventilation (IHMV). This article aims to describe the medical and patient-related aspects of terminating IHMV in patients with advanced stage ALS. A retrospective, descriptive study was made of all ALS patients cared for at our center from 2002 to 2009 who decided to withdraw their consent for IHMV. All 12 ALS patients (4 females) received continuous IHMV. They had a median age of 61 years (range, 39-69 years). In all cases advance directives for end of life care, particularly concerning withdrawal of treatment, were discussed before the initiation of IHMV. The median time from initiation of IHMV to the decision to terminate treatment was 22 months (range, 1-35 months). The reasons for requests were for all patients a general loss of "meaning in life." Deep sedation was achieved with high dose morphine and diazepam before disconnecting the ventilator. Patients' requests for the withdrawal of IHMV in advanced stage ALS was related to a perceived "loss of meaning in life." Termination of treatment was performed under deep sedation as a medically, legally, and ethically justified procedure.

Clinical Services for Home Oxygen Therapy and Home Mechanical Ventilation Patients in Yamagata Prefecture after the Great East Japan Earthquake

Clinical Services for Home Oxygen Therapy and Home Mechanical Ventilation Patients in Yamagata Prefecture after the Great East Japan Earthquake

The role of non‐invasive home mechanical ventilation in patients with chronic obstructive pulmonary disease requiring prolonged weaning

Patients with COPD who require prolonged weaning from invasive mechanical ventilation show poor long-term survival. Whether non-invasive home mechanical ventilation (HMV) has a beneficial effect after prolonged weaning has not yet been clearly determined. Patients with COPD who required prolonged weaning and were admitted to a specialized weaning centre between January 2002 and February 2008 were enrolled in the study. Long-term survival and prognostic factors, including the role of non-invasive HMV, were evaluated. Of 117 patients (87 men, 30 women; mean age 69.5±9.5 years) included in the study, weaning from invasive ventilation was achieved in 82 patients (70.1%). Successful weaning was associated with better survival 1 year after discharge from hospital (hazard ratio (HR) 2.24, 95% CI: 1.16-4.31; P=0.016). Among the 82 patients who were successfully weaned, non-invasive HMV was initiated in 39 (47.6%) due to persistent chronic ventilatory failure. Initiation of HMV was associated with a higher rate of survival to 1 year as compared with patients who did not receive ventilatory support (84.2% vs 54.3%; HR 3.68, 95% CI: 1.43-9.43; P=0.007). In addition, younger age and higher PaO₂, haemoglobin concentration and haematocrit at discharge were associated with better survival. In an adjusted multivariate analysis, initiation of non-invasive HMV after successful weaning remained an independent prognostic factor for survival to 1 year (HR 3.63, 95% CI: 1.23-10.75; P=0.019). These findings suggest that based on the potential for improvement in long-term survival, non-invasive HMV should be considered in patients with severe COPD and persistent chronic hypercapnic respiratory failure after prolonged weaning.