Breathlessness and other respiratory symptoms in palliative care

Mapping Intimacies ◽

10.1093/med/9780198821328.003.0058 ◽

2021 ◽

pp. 589-603

Author(s):

Miriam J. Johnson ◽

David C. Currow

Keyword(s):

Palliative Care ◽

Perceptual Experience ◽

Coping Style ◽

Help Seeking ◽

Evidence Base ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Help Seeking Behaviour ◽

The Individual ◽

Underlying Pathophysiology

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.

Download Full-text

Non-invasive ventilation in palliative care: a systematic review

Minerva Medica ◽

10.23736/s0026-4806.19.06273-6 ◽

2020 ◽

Vol 110 (6) ◽

Author(s):

Teresa Diaz de Teran ◽

Elena Barbagelata ◽

Catia Cilloniz ◽

Antonello Nicolini ◽

Tommaso Perazzo ◽

...

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Invasive Ventilation ◽

Non Invasive ◽

Non Invasive Ventilation

Download Full-text

Using medication in children’s palliative care

Oxford Textbook of Palliative Care for Children ◽

10.1093/med/9780198821311.003.0015 ◽

2021 ◽

pp. 145-152

Author(s):

Andy Gray ◽

Jane Riddin ◽

Richard Hain

Keyword(s):

Palliative Care ◽

Symptom Control ◽

Evidence Base ◽

Oral Route ◽

Essential Medicines ◽

Insufficient Evidence ◽

Rights Of The Child ◽

Child Friendly ◽

The Individual ◽

Alternative Routes

Using medication in children’s palliative care (CPC) is fraught with difficulties as a result of an insufficient evidence-base and a lack of child friendly formulations, however this cannot be a reason not to intervene and allow unnecessary suffering. A lack of access in some countries to even essential medicines such as opioids is an infringement of the rights of the child to pain relief and needs urgent redress. Often, the only reasonable option is to extrapolate from adult data and to proceed rationally on the basis of what the prescriber knows about the available drug, the individual child, and the likely effects of their disease. Alternative routes for administration of medicines in children who are no longer able to use the oral route, such as the trans- and sub-cutaneous and buccal route mean symptom control can be provided at home and until end of life.

Download Full-text

Informatics and Literature Search

10.1093/med/9780199656097.003.0073 ◽

2015 ◽

Author(s):

Jennifer J. Tieman ◽

David C. Currow

Keyword(s):

Palliative Care ◽

Health Professionals ◽

Domain Knowledge ◽

Literature Search ◽

Evidence Base ◽

Practice Research ◽

Clinical Knowledge ◽

Research And Education ◽

The Individual

Health information technology is changing how health professionals engage with and use knowledge and how health systems organize care. Tools and resources can facilitate access to evidence and enable its application in practice improving outcomes for the individual patient and for the health-care system. However, the quality of these applications relies on the quality and currency of the domain knowledge that is embedded within them and distributed through them. Therefore being able to identify and retrieve palliative care’s evidence base is more critical than ever. Given the complexity of timely, efficient, and effective retrieval of needed knowledge, new approaches are needed to manage the expanding and diffuse knowledge base for palliative care. Such strategies include developing online repositories of clinical knowledge to ensure immediate access and creating search solutions that shortcut access to literature and evidence to support practice, research, and education.

Download Full-text

Ward-Based Non-Invasive Ventilation in Acute Exacerbations of COPD: A Narrative Review of Current Practice and Outcomes in the UK

Healthcare ◽

10.3390/healthcare6040145 ◽

2018 ◽

Vol 6 (4) ◽

pp. 145 ◽

Cited By ~ 4

Author(s):

Samuel Trethewey ◽

Ross Edgar ◽

Alice Turner ◽

Rahul Mukherjee

Keyword(s):

Current Practice ◽

Evidence Base ◽

Narrative Review ◽

Chronic Obstructive ◽

Invasive Ventilation ◽

Obstructive Pulmonary Disease ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Hospitalised Patients ◽

The Uk

Non-invasive ventilation (NIV) is frequently used as a treatment for acute hypercapnic respiratory failure (AHRF) in hospitalised patients with acute exacerbation of chronic obstructive pulmonary disease (AECOPD). In the UK, many patients with AHRF secondary to AECOPD are treated with ward-based NIV, rather than being treated in critical care. NIV has been increasingly used as an alternative to invasive ventilation and as a ceiling of treatment in patients with a ‘do not intubate’ order. This narrative review describes the evidence base for ward-based NIV in the context of AECOPD and summarises current practice and clinical outcomes in the UK.

Download Full-text

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

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-001672 ◽

2019 ◽

Vol 10 (3) ◽

pp. 358-362 ◽

Cited By ~ 1

Author(s):

Aoife Gleeson ◽

Faye Johnson

Keyword(s):

Palliative Care ◽

Assisted Ventilation ◽

Specialist Palliative Care ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Number Of Patients ◽

Palliative Care Setting ◽

Admission Policies ◽

Palliative Care Units ◽

The Uk

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.

Download Full-text

Stigma towards individuals who self harm: impact of gender and disclosure

Journal of Public Mental Health ◽

10.1108/jpmh-02-2018-0016 ◽

2018 ◽

Vol 17 (4) ◽

pp. 184-194 ◽

Cited By ~ 4

Author(s):

Brendan Lloyd ◽

Alexandra Blazely ◽

Lisa Phillips

Keyword(s):

Help Seeking ◽

Tertiary Education ◽

Personal Responsibility ◽

First Year ◽

Content Type ◽

Help Seeking Behaviour ◽

Stigmatizing Attitudes ◽

History Of ◽

The Individual ◽

The Impact

PurposeNon-suicidal self-injury (NSSI) is reasonably common, particularly among young people with prevalence rates of up to 25 per cent reported. Many factors contribute towards NSSI, including depression, anxiety and history of abuse and NSSI is a risk factor for suicide. Many people who engage in NSSI do not seek help, potentially due to concern about sigmatising attitudes. The purpose of this paper is to investigate the impact of gender and disclosure on stigmatising attitudes towards individuals who engage in NSSI.Design/methodology/approachParticipants were 384 first-year university students (77.4 per cent female; mean age 19.50 years (SD=3.53)) who completed measures of stigmatising attitudes in response to vignettes featuring individuals who engaged in self-harming behaviour. Vignettes varied in the gender of the individual as well as whether the NSSI was disclosed or not.FindingsThe results support the attribution model of public discrimination in relation to NSSI stigma. Perceptions of higher personal responsibility for NSSI behaviour and higher levels of danger and manipulation were positively associated with stigmatizing attitudes and behaviours. Male research participants reported significantly higher levels of stigmatizing attitudes and behaviours than females.Social implicationsThe level of stigmatising attitudes towards individuals who engage in NSSI is significant and may impact on help-seeking behaviour.Originality/valueBetween 10 and 25 per cent of adolescents engage in some form of NSSI, but only a minority seek help to address this behaviour. This study suggests that attitudes by peers may influence help-seeking. Further research is required outside of tertiary education settings.

Download Full-text

Randomised cross-over trial evaluating the short-term effects of non-invasive ventilation as an adjunct to airway clearance techniques in adults with cystic fibrosis

BMJ Open Respiratory Research ◽

10.1136/bmjresp-2018-000399 ◽

2019 ◽

Vol 6 (1) ◽

pp. e000399 ◽

Cited By ~ 1

Author(s):

Gemma Stanford ◽

Helen Parrott ◽

Diana Bilton ◽

Penny Agent ◽

Winston Banya ◽

...

Keyword(s):

Cystic Fibrosis ◽

Work Of Breathing ◽

Evidence Base ◽

Forced Expiratory Volume ◽

Post Treatment ◽

Invasive Ventilation ◽

Non Invasive ◽

Airway Clearance ◽

Non Invasive Ventilation ◽

Pre Treatment

IntroductionNon-invasive ventilation (NIV) is used in cystic fibrosis (CF) to support airway clearance techniques (ACTs) by augmenting tidal volumes and reducing patient effort. However, the evidence base for this is limited. We hypothesised that NIV, in addition to usual ACT, would increase sputum clearance. In addition, we investigated ease of sputum clearance (EoC), work of breathing (WoB) and NIV tolerability.MethodsAdults with CF (16+ years) at the end of hospitalisation for a pulmonary exacerbation were randomised to a cross-over trial of NIV-supported ACT or ACT alone in two consecutive days. No other changes to standard care were made. The primary outcome was the total 24-hour expectorated sputum wet weight after the intervention. Spirometry was completed pre-treatment and post-treatment. Oxygen saturations were measured pre-treatment, during treatment and post-treatment. EoC and WoB were assessed using Visual Analogue Scale.Results14 subjects completed the study (7 male, mean age 35 [SD 17] years, mean forced expiratory volume in 1 s [FEV1] 49 [20] % predicted). The difference between treatment regimens was −0.98 g sputum (95% CI −11.5 to 9.6, p=0.84) over 24 hours. During treatment oxygen saturations were significantly higher with NIV-supported ACT (mean difference 2.0, 95% CI 0.9 to 2.6, p=0.0004). No other significant differences were found in post-treatment FEV1, EoC, WoB, oxygen saturations or subject preference.ConclusionsThere was no difference in treatment effect between NIV-supported ACT and ACT alone, although the study was underpowered. Oxygen saturations were significantly higher during NIV-supported ACT, but with no effect on post-treatment saturations. NIV was well tolerated.Trial registration numberNCT01885650.

Download Full-text

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

BMC Palliative Care ◽

10.1186/s12904-021-00755-w ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

V. Guastella ◽

G. Piwko ◽

A. Greil ◽

C. Lambert ◽

A. Lautrette

Keyword(s):

Palliative Care ◽

Respiratory Failure ◽

End Of Life ◽

Palliative Sedation ◽

Invasive Ventilation ◽

Factors Associated ◽

Non Invasive ◽

Non Invasive Ventilation ◽

Care Training ◽

Personal Ethics

Abstract Background Deciding to withdraw non-invasive ventilation (NIV) at end-of-life (EOL) in patients with chronic respiratory failure is a challenge. The European Association for Palliative Care recommends not maintaining artificial therapies that could prolong life during palliative sedation (PS) at EOL. The aim of this survey was to assess palliative care physicians’ and pulmonologists’ opinion on withdrawing or maintaining NIV in patients with chronic respiratory failure during PS at EOL. Methods From April to May 2019, we performed a prospective survey among pulmonologists (n = 1545) and palliative care physicians (n = 631) in France to determine the prevalence of opinion in favour of maintaining NIV and identify the factors associated with opinion in favour of withdrawing or maintaining NIV with multiple logistic regression. Results A total of 457 participants were enrolled comprising 202 pulmonologists and 255 palliative care physicians. An opinion in favour of maintaining NIV was found in 88 (19.3 95%CI [15.7; 23.2]) physicians comprising 57 (28.2%) pulmonologists and 31 (12.2%) palliative care physicians (p < 0.001). The factors associated with an opinion in favour of maintaining NIV were spending time looking for advanced directives (AD) in the patient’s file (odds ratio (OR): 6.54, 95%CI [2.00; 21.32], p = 0.002) and personal ethics of physicians (OR: 17.97, 95%CI [9.52; 33.89], p < 0.001). The factor associated with an opinion in favour of withdrawing NIV was palliative care training (OR: 0.31, 95%CI [0.16; 0.60], p < 0.001). The three main reasons in favour of maintaining NIV among the nine identified were emotional comfort for close relatives, reducing discomfort of dyspneoa and anticipation of suffocation. Conclusion In France, around 20% of pulmonologists and palliative care physicians declared an opinion in favour of maintaining NIV during PS at EOL because of their personal ethics and spending time looking for AD, if any, in the patient’s file. Palliative care training can stimulate reflection help foster a change of opinion about practices, especially in the case of patients with NIV during PS at EOL.

Download Full-text