Assisted ventilation in motor neurone disease during inpatient palliative care: barriers and utilisation

2019 ◽  
Vol 10 (3) ◽  
pp. 358-362 ◽  
Author(s):  
Aoife Gleeson ◽  
Faye Johnson

ObjectivesAn increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input.3 The aim was to establish the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage patients with MND using assisted ventilation especially TV and to identify any associated barriers.MethodsA 25-item questionnaire was developed in Survey Monkey. A link to the questionnaire was emailed to every medical director (n=185) of inpatient hospices/SPCUs in the UK and Ireland.ResultsThe response rate was 42.4% (n=78). 97.4% of units admit patients with MND on non-invasive ventilation (NIV), but only 28.2% admit those using TV. 80.8% of units have adequate expertise in the management of NIV, compared with 7.7% for managing TV. 35.9% and 2.6% of units have a policy for managing patients using NIV and TV, respectively. 14.1% respondents had been involved in the care of patients with MND using TV, in the specialist palliative care setting in the last 5 years.ConclusionsA minority of UK and Irish hospices/SPUs provide support to TV MND patients and few units currently have management or admission policies for this cohort of patients. Respondents indicated a lack of appropriate expertise and experience. Further exploration of these barriers is required to establish how to optimise care for TV MND patients in this setting.

2020 ◽  
Vol 110 (6) ◽  
Author(s):  
Teresa Diaz de Teran ◽  
Elena Barbagelata ◽  
Catia Cilloniz ◽  
Antonello Nicolini ◽  
Tommaso Perazzo ◽  
...  

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Francesco Cresi ◽  
Federica Chiale ◽  
Elena Maggiora ◽  
Silvia Maria Borgione ◽  
Mattia Ferroglio ◽  
...  

Abstract Background Non-invasive ventilation (NIV) has been recommended as the best respiratory support for preterm infants with respiratory distress syndrome (RDS). However, the best NIV technique to be used as first intention in RDS management has not yet been established. Nasal intermittent positive pressure ventilation (NIPPV) may be synchronized (SNIPPV) or non-synchronized to the infant’s breathing efforts. The aim of the study is to evaluate the short-term effects of SNIPPV vs. NIPPV on the cardiorespiratory events, trying to identify the best ventilation modality for preterm infants at their first approach to NIV ventilation support. Methods An unmasked randomized crossover study with three treatment phases was designed. All newborn infants < 32 weeks of gestational age with RDS needing NIV ventilation as first intention or after extubation will be consecutively enrolled in the study and randomized to the NIPPV or SNIPPV arm. After stabilization, enrolled patients will be alternatively ventilated with two different techniques for two time frames of 4 h each. NIPPV and SNIPPV will be administered with the same ventilator and the same interface, maintaining continuous assisted ventilation without patient discomfort. During the whole duration of the study, the patient’s cardiorespiratory data and data from the ventilator will be simultaneously recorded using a polygraph connected to a computer. The primary outcome is the frequency of episodes of oxygen desaturation. Secondary outcomes are the number of the cardiorespiratory events, FiO2 necessity, newborn pain score evaluation, synchronization index, and thoracoabdominal asynchrony. The calculated sample size was of 30 patients. Discussion It is known that NIPPV produces a percentage of ineffective acts due to asynchronies between the ventilator and the infant’s breaths. On the other hand, an ineffective synchronization could increase work of breathing. Our hypothesis is that an efficient synchronization could reduce the respiratory work and increase the volume per minute exchanged without interfering with the natural respiratory rhythm of the patient with RDS. The results of this study will allow us to evaluate the effectiveness of the synchronization, demonstrating whether SNIPPV is the most effective non-invasive ventilation mode in preterm infants with RDS at their first approach to NIV ventilation. Trial registration ClinicalTrials.gov NCT03289936. Registered on September 21, 2017.


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Julia García Mancebo ◽  
Sara de la Mata Navazo ◽  
Estíbaliz López-Herce Arteta ◽  
Rosario Montero Mateo ◽  
Isabel María López Esteban ◽  
...  

AbstractDuring the last decades, the number of patients with long stay admissions (LSA) in PICU has increased. The purpose of this study was to identify factors associated with PICU LSA, assessing healthcare resources use and changes in the profile of these patients. A retrospective, observational, single-center study was carried out. Characteristics of LSA were compared between two periods (2006–2010 and 2011–2015). During the earlier period there were 2,118 admissions (3.9% of them LSA), whereas during the second period, there were 1,763 (5.4% of them LSA) (p = 0.025). LSA accounted for 33.7% PICU stay days during the first period and 46.7% during the second (p < 0.001). Higher use of non-invasive ventilation (80.2% vs. 37.8%, p = 0.001) and high-flow oxygen therapy (68.8% vs. 37.8%, p = 0.005) was observed in the 2011–2015 cohort, whereas the use of arterial catheter (77.1% vs. 92.6%, p = 0.005), continuous infusion of adrenaline (55.2% vs. 75.9%, p = 0.004), and hemoderivative transfusion (74% vs. 89.2%, p = 0.010) was less frequent. In the 2006–2010 cohort, hospital-acquired infections were more common (95.2% vs. 68.8%, p < 0.001) and mortality was higher (26.8% vs. 13.8%, p = 0.026). The number of long-stay PICU admissions have increased entailing an intensive use of healthcare resources. These patients have a high risk for complications and mortality.


2021 ◽  
pp. 589-603
Author(s):  
Miriam J. Johnson ◽  
David C. Currow

Breathlessness is prevalent among palliative care patients with intensity likely to increase as death approaches for many people. There are two main patterns of breathlessness—episodic breathlessness and constant breathlessness—and three separate qualities of breathlessness—air hunger, work or effort, and tightness. Chronic breathlessness is defined as disabling breathlessness despite optimal treatment of the underlying pathophysiology. The measurement of breathlessness includes three domains: sensory-perceptual experience, affective distress, and symptom impact. The management of breathlessness includes specific disease management, non-pharmacological interventions, pharmacological therapies, and, in a very small proportion of people, palliative non-invasive ventilation. A full assessment of the widespread effects of chronic breathlessness on the individual including coping style and help-seeking behaviour is important to tailor interventions. Interventions focused on the breathlessness can be based on a ‘Breathing, Thinking, Functioning’ clinical framework. Oral, low-dose morphine in steady state remains the pharmacological treatment with the strongest evidence base.


Thorax ◽  
2019 ◽  
Vol 75 (3) ◽  
pp. 244-252 ◽  
Author(s):  
Marieke L Duiverman ◽  
Judith M Vonk ◽  
Gerrie Bladder ◽  
Joost P van Melle ◽  
Jellie Nieuwenhuis ◽  
...  

IntroductionChronic non-invasive ventilation (NIV) has become evidence-based care for stable hypercapnic COPD patients. While the number of patients increases, home initiation of NIV would greatly alleviate the healthcare burden. We hypothesise that home initiation of NIV with the use of telemedicine in stable hypercapnic COPD is non-inferior to in-hospital NIV initiation.MethodsSixty-seven stable hypercapnic COPD patients were randomised to initiation of NIV in the hospital or at home using telemedicine. Primary outcome was daytime arterial carbon dioxide pressure (PaCO2) reduction after 6 months NIV, with a non-inferiority margin of 0.4 kPa. Secondary outcomes were health-related quality of life (HRQoL) and costs.ResultsHome NIV initiation was non-inferior to in-hospital initiation (adjusted mean difference in PaCO2 change home vs in-hospital: 0.04 kPa (95% CI −0.31 to 0.38 kPa), with both groups showing a PaCO2 reduction at 6 months compared with baseline (home: from 7.3±0.9 to 6.4±0.8 kPa (p<0.001) and in-hospital: from 7.4±1.0 to 6.4±0.6 kPa (p<0.001)). In both groups, HRQoL improved without a difference in change between groups (Clinical COPD Questionnaire total score-adjusted mean difference 0.0 (95% CI −0.4 to 0.5)). Furthermore, home NIV initiation was significantly cheaper (home: median €3768 (IQR €3546–€4163) vs in-hospital: median €8537 (IQR €7540–€9175); p<0.001).DiscussionThis is the first study showing that home initiation of chronic NIV in stable hypercapnic COPD patients, with the use of telemedicine, is non-inferior to in-hospital initiation, safe and reduces costs by over 50%.Trial registration numberNCT02652559.


2012 ◽  
Vol 2 (Suppl 1) ◽  
pp. A60.3-A61
Author(s):  
Eva Lew ◽  
Srirupa Gupta ◽  
Caroline Hare ◽  
Jackie Flynn ◽  
Mark Cobbin ◽  
...  

2020 ◽  
Author(s):  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Sabrina Bajwah ◽  
Andy Bradshaw ◽  
Rachel Cripps ◽  
...  

AbstractBackgroundSpecialist palliative care services have a key role in a whole system response to COVID-19. There is a need to understand service response to share good practice and prepare for future care.AimTo map and understand specialist palliative care services innovations and practice changes in response to COVID-19 (CovPall).DesignOnline survey of specialist palliative care providers, disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach.Setting/participantsInpatient palliative care units, home nursing services, hospital and home palliative care teams from any country.Results458 respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units, and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload, funding, and IT infrastructure issues. Enablers included; collaborative teamwork, pooling of staffing resources, staff flexibility, a pre-existing IT infrastructure and strong leadership.ConclusionsSpecialist palliative care services have been flexible, highly adaptive and have adopted a ‘frugal innovation’ model in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use.ISRCTN16561225https://doi.org/10.1186/ISRCTN16561225Key StatementsWhat is already known about the topic?Specialist palliative care is part of a whole healthcare system response to COVID-19.Services need to make practice changes in response to the global pandemic.What this paper addsSpecialist palliative care services responded rapidly to COVID-19 in both planning for change and then adapting to needs and requirements.Services often relied on ‘improvisation’, ‘quick fixes’ and ‘making do’ when responding to the COVID-19 crisis.Implications for practice, theory or policyIn addition to financial support, greater collaboration is essential to build organisational resilience and drive forward innovation, by minimising duplication of effort and optimising resource use.The effectiveness and sustainability of any changes made during the crisis needs further evaluation.


2020 ◽  
pp. bmjspcare-2020-002251
Author(s):  
Rebecca Woodhouse ◽  
Najma Siddiqi ◽  
Jason W Boland ◽  
Imogen Featherstone ◽  
Miriam J Johnson

ObjectivesDelirium is common and distressing in palliative care settings. This survey aims to describe current practice regarding delirium identification in specialist palliative care units (SPCU), such as inpatient hospices, in the UK.MethodsAn 18-item anonymous online survey was distributed by Hospice UK to their network of clinical leads (n=223), and to their research mailing list (n=228). The survey was also sent to the chair of the Hospice UK executive clinical leads forum for direct dissemination to forum representatives (n=20). Clinical leads and forum representatives were asked to distribute the survey to healthcare staff in their SPCUs.Results220 SPCU staff (48% nurses; 31% doctors; 10% healthcare assistants) completed the survey. Approximately half reported using clinical judgement alone to screen (97/204; 48%) and/or diagnose (124/220; 56%) delirium. Over a third used an assessment tool to screen for delirium (76/204; 37%). The majority (150/220; 68%) reported screening in response to clinical symptoms, while few reported routine on-admission (11/220; 5%) or daily-during-admission (12/220; 6%) screening. Most respondents had received some training on delirium (137/220; 62%). However, 130/220 (59%) said their SPCU did not have a training programme for delirium screening and only 79/220 (36%) reported that their SPCU had delirium clinical guidelines. The main barriers to routine screening included: lack of delirium training, lack of guidelines and complexity of patient’s conditions.ConclusionThere is variation in practice for delirium screening and diagnosis in SPCUs. Clinical guidelines for delirium, including consensus on which screening tools to use, are needed for this setting.


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