Response to "The opinion of French pulmonologists and palliative care physicians on non-invasive ventilation during palliative sedation at end of life: a nationwide survey''.

We have several major concerns about this article [Guastella et al 2021]. Although it states that it is about palliative sedation, it is not. Rather, it is about the French Claeys Leonetti Law about Continuous Deep Sedation (CDS) at the end of life [Loi n°2016-87].

Non-invasive advanced respiratory support in end-of-life care and symptom management: systematic review.

OBJECTIVES: To narrate the canon of knowledge around symptom control at end of life for patients using, or having recently used, non-invasive advanced respiratory support (NARS) at end of life for respiratory failure. METHODS: A systematic review forming a narrative synthesis from a wide range of sample papers from Medline, Embase, CINAHL, Emcare, Cochrane and OpenGrey databases. A secondary search of grey literature was also performed with hand searching reference lists and author citations. The review was undertaken using the ENTREQ checklist for quality. RESULTS: In total, 22 studies were included in the synthesis and four themes were generated: NARS as a buoy (NARS can represent hope and relief from the symptoms of respiratory failure), NARS as an anchor (NARS brings significant treatment burden), Impact on Staff (uncertainty over the balance of benefit and burden as well as complex patient care drives distress among staff providing care) and the Process of Withdrawal (withdrawal of therapy felt to be futile exists as discrete event in patient care but is otherwise poorly defined). CONCLUSION: NARS represents a complex interplay of hope, symptom control, unnaturally prolonged death and treatment burden. The literature captures the breadth of these issues, but further, detailed, research is required in almost every aspect of practice around end-of-life care and NARS-especially how to manage symptoms at the end of life.

The Use of Mechanical Ventilation Support at the End of Life in Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A Scoping Review.

There has been an increase in the use of mechanical ventilation (MV) in motor neurone disease (MND) to alleviate symptoms related to hypoventilation. Little is known about its use at the end of life, and the withdrawal of MV is a challenging topic. A scoping review was conducted to map the existing evidence of ventilation use at the end of life in MND. The Joanna Briggs Institute methodological framework was used, and a total of 31 documents were included in the data extraction. Boarder themes around place, planning, cause and comments on death were identified. Our findings show that the focus of the literature has been on the process of the withdrawal of ventilation, creating the subthemes of timing and reason for withdrawal, along with ethical, emotional, and practical issues, medications used and the time until death. There is a foundation of evidence to guide the process and discuss the ethical and emotional issues of withdrawing ventilation. However, there remains limited evidence from patient and family member perspectives. Importantly, there is almost no evidence exploring dying with ventilation in place, the active or passive decisions around this process, how the interface might impact the dying process, or what families think about this.

Impact on staff of providing non-invasive advanced respiratory support during the COVID-19 pandemic: a qualitative study in an acute hospital.

OBJECTIVES: To explore the experiences of healthcare workers providing non-invasive advanced respiratory support (NARS) to critically unwell patients with COVID-19. DESIGN: A qualitative study drawing on a social constructionist perspective using thematic analysis of semistructured interviews. SETTING: A single acute UK National Health Service Trust across two hospital sites. PARTICIPANTS: Multidisciplinary team members in acute, respiratory and palliative medicine. RESULTS: 21 nurses, doctors (juniors and consultants) and physiotherapists described the provision of NARS to critically unwell COVID-19 patients as extremely challenging. The main themes were of feeling ill prepared and unsupported, a need to balance complex moral actions and a sense of duty to patients and their families. The impact on staff was profound and findings are discussed via a lens of moral injury. Injurious events included staff feeling they had acted in a way that caused harm, failed to prevent harm or had been let down by seniors or the Trust. Participants identified factors that mitigated adverse impact. CONCLUSIONS: Although many of the issues described by participants are likely immutable components of healthcare in a pandemic, there were several important protective factors that emerged from the data. Experience, debriefing and breaks from COVID-19 wards were valuable to participants and successfully achieving a peaceful death for the patient was often viewed as compensation for a difficult journey. These protective factors may provide modelling for future education and support services to help prevent moral injury or aide in its recovery. TRIAL REGISTRATION NUMBER: Registered on the Open Science Framework, DOI 10.17605/OSF.IO/TB5QJ.

Mechanical ventilation withdrawal in motor neuron disease: an evaluation of practice.

OBJECTIVES: Clinicians report that withdrawal of mechanical ventilation in motor neuron disease is challenging. We report on the evaluation of the process and outcomes called for by the Association for Palliative Medicine of Great Britain and Ireland (APM) guidance. METHODS: Excel analysis of a core data set, defined in the APM guidance, and thematic analysis of free-text comments, submitted by a UK clinician soon after withdrawal of mechanical ventilation in any care setting. RESULTS: Thirty-seven professionals submitted 46 data sets from 4 patients with tracheostomy ventilation (TV) and 42 with non-invasive ventilation (NIV) in 35 months. These took place at home (43%), inpatient hospice (48%), hospital and care homes. Eighty-nine per cent received opioid and/or sedative medication at the initiation of withdrawal, majority of which were subcutaneous. A median of 2 doses (range 1-9) were used to manage symptoms before ventilation withdrawal. Subsequently 73% of patients required either none or one dose of medication. In addition to any background opioid, symptom management required a total parenteral morphine equivalent mean of 20.6 mg (range 0-60 mg) and midazolam mean of 25.8 mg (range 0-120 mg). The median time from first medication to removal of mechanical ventilation was 45 min. Patients with TV died within 30 min of withdrawal. The mode (14 of 42 patients) time to death after NIV withdrawal was 15 min, but ranged between <15 min and 54 hours. CONCLUSIONS: Individualised, proportionate, titrated opioid and sedative medications were used to provide good symptom management, and provided new insight into the substantial variability in what patients require to manage their symptoms and how long the process takes. Most patients required lower doses than in previous literature.