BACKGROUND: Cystic fibrosis is a life-limiting autosomal recessive genetic illness. A feeling of shortness of breath is common in cystic fibrosis, especially as the disease progresses. Reversing the underlying cause is the priority when treating breathlessness (dyspnoea), but when it is not feasible, palliation (easing) becomes the primary goal to improve an individual's quality of life. A range of drugs administered by various routes have been used, but no definite guidelines are available. A systematic review is needed to evaluate such treatments.
OBJECTIVES: To assess the efficacy and safety of drugs used to ease breathlessness in people with cystic fibrosis.
SEARCH METHODS: We searched the Cochrane Cystic Fibrosis Trials Register, compiled from electronic database searches and handsearching of journals and conference abstract books. Date of last search: 18 November 2019. We searched databases (clinicaltrials.gov, the ISRCTN registry, the Clinical Trials Registry India and WHO ICTRP) for ongoing trials. These searches were last run on 06 March 2020.
SELECTION CRITERIA: We planned to include randomised and quasi-randomised controlled trials in people with cystic fibrosis (diagnosed by a positive sweat chloride test or genetic testing) who have breathlessness. We considered studies comparing any drugs used for easing breathlessness to another drug administered by any route (inhaled (nebulised), intravenous, oral, subcutaneous, transmucosal (including buccal, sublingual and intra-nasal) and transdermal).
DATA COLLECTION AND ANALYSIS: The authors assessed the search results according to the pre-defined inclusion criteria.
MAIN RESULTS: The new searches in 2020 yielded two ongoing studies that were not relevant to the review question. Previous searches had found only one study (cross-over in design), which did not fulfil the inclusion criteria as no data were available from the first treatment period alone.
AUTHORS' CONCLUSIONS: Due to the lack of available evidence, this review cannot provide any information for clinical practice. The authors call for specific research in this area after taking into account relevant ethical considerations. The research should focus on the efficacy and safety of the drugs with efficacy being measured in terms of improvement in quality of life, dyspnoea scores and hospital stay.
Respiratory symptoms are common in patients living with serious illness, both in cancer and nonmalignant conditions. Common symptoms include dyspnea (breathlessness), cough, malignant pleural effusions, airway secretions, and hemoptysis. Basic management of respiratory symptoms is within the scope of primary palliative care. There are pharmacologic and nonpharmacologic approaches to treating respiratory symptoms. This article provides clinicians with treatment approaches to these burdensome symptoms.
Coronavirus-19 disease (COVID-19) has quickly spread to cause a global pandemic, and produces a spectrum of disease from mild respiratory illness to severe acute respiratory distress syndrome. Current estimates indicate that 15% of patients with COVID-19 will develop severe disease, and 5 to 10% will require intensive care-level support. In certain scenarios, escalation of life-sustaining therapies (defined as intubation, mechanical ventilation,vasopressor support, and/or hemodialysis) will either not be within the patient’s goals of care, or will unfortunately be unsuccessful. Overall mortality risk from COVID-19is estimated to be between 3 and 5%.
Good symptom management in oncology is associated with improved patient and family quality of life, greater treatment compliance, and may even offer survival advantages. With population growth and aging, the proportion of patients with multiple symptoms-both related and unrelated to their cancer-is anticipated to increase, supporting calls for a more routine and integrated approach to symptom management. This article presents a summary of the literature for the use of symptom assessment tools and reviews the management of four common and distressing symptoms commonly experienced by people with advanced cancer: pain, breathlessness, nausea and vomiting, and fatigue. We also discuss the role of palliative care in supporting a holistic approach to symptom management throughout the cancer trajectory.
Breathlessness is one of the most common symptoms experienced at the end of life, affecting all areas of a patient's life. It is frightening and leads to high rates of emergency hospital attendances. Often, there is no easily reversible cause and patients are admitted to the acute medical unit (AMU) in order to manage their symptoms with little overall benefit - frustrating patients and clinicians alike. This review reminds the generalist of the significance of breathlessness as a symptom. It highlights the management strategies available to effect improvement and gives practical tips on how this can be achieved within the busy and time-pressured environment of the AMU.
Background: Chronic breathlessness is a neglected symptom of advanced diseases.
Aim: To examine the effect of airflow for chronic breathlessness relief.
Design: Exploratory systematic review and meta-analysis.
Data sources: Medline, CINAHL, AMED and Cochrane databases were searched (1985–2018) for observational studies or randomised controlled trials of airflow as intervention or comparator. Selection against predefined inclusion criteria, quality appraisal and data extraction was conducted by two independent reviewers with access to a third for unresolved differences. ‘Before and after’ breathlessness measures from airflow arms were analysed. Meta-analysis was carried out where possible.
Results: In all, 16 of 78 studies (n = 929) were included: 11 randomised controlled trials of oxygen versus medical air, 4 randomised controlled trials and 1 fan cohort study. Three meta-analyses were possible: (1) Fan at rest in three studies (n = 111) offered significant benefit for breathlessness intensity (0–100 mm visual analogue scale and 0–10 numerical rating scale), mean difference -11.17 (95% confidence intervals (CI) -16.60 to -5.74), p = 0.06 I2 64%. (2) Medical air via nasal cannulae at rest in two studies (n = 89) improved breathlessness intensity (visual analogue scale), mean difference -12.0 mm, 95% CI -7.4 to -16.6, p < 0.0001 I2 = 0%. (3) Medical airflow during a constant load exercise test before and after rehabilitation (n = 29) in two studies improved breathlessness intensity (modified Borg scale, 0–10), mean difference -2.9, 95% CI -3.2 to -2.7, p < 0.0001 I2 = 0%.
Conclusion: Airflow appears to offer meaningful relief of chronic breathlessness and should be considered as an adjunct treatment in the management of breathlessness.
Breathlessness is a common symptom for patients with terminal illness and can be challenging to manage. Breathlessness is acknowledged to be an interaction between body and mind. There are a variety of pharmacological and non-pharmacological therapies that can be beneficial. The holistic assessment of the breathlessness patient should enable delivery of a tailored package of care focused on relief of symptoms.
Background: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear.
Aim: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services.
Design: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models.
Participants: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%).
Results: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43–0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35–2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes.
Conclusions: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.
Background: The aim of the study was to assess four evidence-based assessments utilising exercise challenges that induce breathlessness, each with progressively less demanding levels of exertion, which can be tailored to people with a range of functional capabilities in the setting of advanced cancer for research studies. Functional cut off points for these assessments have not previously been defined.
Methods: A cross sectional study of four exercise tests attempted by all participants: 6 min walk test (6MWT); (derived) 2 min walk test (2MWT); arm exercises; and reading numbers aloud. Performance status (Australia-modified Karnofsky Performance Status (AKPS)), baseline breathlessness using the modified Medical Research Council (mMRC) breathlessness scale, and a visual analogue scale of intensity and unpleasantness of breathlessness were measured. Co-morbidity was codified using the Charlson Co-morbidity Index. Percentage of people completing each test by AKPS level of function and baseline mMRC breathlessness scores were quantified.
Results: In the 68 participants, poorer function decreased the proportion of people able to complete the exercise tests. For completion rates =80%, of 6MWT and 2MWT, only people with an AKPS 70–90 had completion. For arm exercises, this included people with an AKPS as low as =50; and for reading numbers, it included people with an AKPS of 40 but not below.
Conclusions: Walking tests have poor utility in people with high levels of functional impairment. For people with high levels of dependence, reading numbers should be used in evaluating exercise-induced breathlessness in research studies. These data also suggest that people’s exertional limitations have been under-estimated as cancer progresses.
Several children receiving palliative care experience dyspnea and pain. An order protocol for distress (OPD) is available at Sainte-Justine Hospital, aimed at alleviating respiratory distress, pain and anxiety in pediatric palliative care patients. This study evaluates the clinical use of the OPD at Sainte-Justine Hospital, through a retrospective chart review of all patients for whom the OPD was prescribed between September 2009 and September 2012. Effectiveness of the OPD was assessed using chart documentation of the patient's symptoms, or the modified Borg scale. Safety of the OPD was evaluated by measuring the time between administration of the first medication and the patient's death, and clinical evolution of the patient as recorded in the chart. One hundred and four (104) patients were included in the study. The OPD was administered at least once to 78 (75%) patients. A total of 350 episodes of administration occurred, mainly for respiratory distress (89%). Relief was provided in 90% of cases. The interval between administration of the first protocol and death was 17 h; the interval was longer in children with cancer compared to other illnesses (p = 0.02). Data from this study support the effectiveness and safety of using an OPD for children receiving palliative care.
BACKGROUND/OBJECTIVE: Breathlessness is a highly prevalent and distressing symptom in patients with cancer and advanced chronic diseases. Symptom management is often overlooked. We explored the experiences of patients, caregivers, and health care providers (HCPs) and their expectations for future service developments.
DESIGN: This is a multiperspective qualitative study drawing on semistructured interviews.
SETTING/SUBJECTS: Participants were recruited from palliative, respiratory, and cardiology departments of the Munich University Hospital and from a chronic obstructive pulmonary disease (COPD) patient group.
MEASUREMENTS: Interviews were analyzed using qualitative content analysis. Subcategories used the directional views of participants (positive, negative, and indifferent). The coding tree identified three categories: (1) attributes of symptom management, (2) practice pattern gaps, and (3) components of good practice.
RESULTS: Ten patients (5 female, 65.2 median age; COPD n = 3, cancer n = 3, chronic heart failure n = 2, and lung fibrosis n = 2), 3 caregivers (2 female, 53.6 median age), and 10 HCPs were interviewed. Patients and caregivers felt stressed and frustrated due to a lack of awareness regarding the symptom burden and little support from HCPs. HCPs pointed to a lack of therapeutic concepts and unclear assumptions of responsibilities. Specialist breathlessness services are perceived as addressing important gaps in professional practice from the viewpoint of all stakeholders. Accessibility and collaboration with other local health care services are important features of such specialist services.
CONCLUSIONS: Chronic refractory breathlessness in advanced disease is managed insufficiently for most patients, caregivers, and HCPs. Increased knowledge about effective interventions and availability of skills-based training for patients, caregivers, and HCPs would help in breathlessness management.
PURPOSE OF REVIEW: The experience of breathlessness in patients with heart failure is understudied. This review was aimed at evaluating the most recent qualitative findings regarding the experience of breathlessness in persons diagnosed with heart failure.
RECENT FINDINGS: A literature search was conducted using Pubmed, Psycinfo, BNI, Cinahl and Google Scholar including studies on breathlessness experience in patients with heart failure, published between 2017 and 2018. Only three studies were identified, and findings were categorized into five themes: acknowledgment of breathlessness, prevailing consequences of breathlessness, breathlessness in daily life, recognising when breathlessness is a problem and communicating breathlessness. Understanding the experience of breathlessness was different before and after heart failure diagnosis. Patients experienced similar physical and emotional consequences of breathlessness but varied in strategies to manage the symptom. Patients often do not report breathlessness symptom, or are not asked to describe their symptom by the provider.
SUMMARY: Recent studies show those at risk for and those who have heart failure need appropriate education to recognize breathlessness as a critical symptom. In addition, adequate communication between patients and providers of the breathlessness symptom is needed to support management.
INTRODUCTION: Dyspnea is prominently observed in palliative care (PC). Dyspnea can be multifactorial, primarily caused by obstructive or restrictive lung diseases or secondarily induced by various comorbidities. Numerous interventions exist, with route of administration and efficacy requiring further discussion. Despite opioids being the first line of treatment, their adverse effects lead to reluctance on the side of patients to take them, creating limitations in patient management planning.
OBJECTIVES: This paper reviews and highlights the role of inhalers for dyspnea management in PC.
METHODS: The CINAHL, CENTRAL, and OVID databases were searched for scholarly articles on the role of inhalers in dyspnea management from 1998 to the present. A grey literature Internet search was also performed via Google, the World Health Organization, and CareSearch. Twenty-five articles relevant to the subject at hand were located and summarized. The Cochrane Systematic Reviews of Health Promotion and Public Health Interventions Handbook was consulted for structuring.
RESULT: Isolated bronchodilators can be effective in dyspnea management. However, combination with opioids leads to a 52% reduction of dyspnea, demonstrating efficacy of their combined use. There is a role for conventional inhalers not only in patients afflicted with chronic obstructive pulmonary disease, but also in those where obstruction is reversible, and in cases of dyspnea not yet diagnosed.
CONCLUSION: Inhalers can be utilized as adjuvant therapy to opioids, to limit opioid use, augment responses to dyspnea, and/or minimize opioid side effects, especially in opioid-naïve patients. Correct administration can increase the efficacy of short-acting beta-agonists, long-acting beta-agonists, short- and long-acting anticholinergic agents, and inhaled corticosteroids, achieving reduction and alleviation of dyspnea.
CONTEXT: Breathlessness is common and distressing in advanced illness. It is a challenge to assess, with few effective treatment options. To evaluate new treatments, appropriate outcome measures which reflect the concerns of people experiencing breathlessness are needed.
OBJECTIVES: To systematically review and synthesise the main concerns of people with advanced illness experiencing breathlessness to guide comprehensive clinical assessment and inform future outcome measurement in clinical practice and research.
METHODS: Systematic review following PRISMA methodology. MEDLINE (1946-2017), PsycINFO (1806-2017), and EMBASE (1974-2017), as well as key journals, grey literature, reference lists, and citation searches identified qualitative studies exploring the concerns of people living with breathlessness. Included studies were quality assessed using the Critical Appraisal Skills Program checklist, and analysed using thematic synthesis.
RESULTS: We included thirty-eight studies with 672 participants. Concerns were identified across six domains of 'total' breathlessness; physical, emotional, spiritual, social, control, and context (chronic and episodic breathlessness). Four of these have been previously identified in the concept of 'total dyspnoea'. Control and context have been newly identified as important, particularly in their influence on coping and help-seeking behaviour. The importance of social participation, impact on relationships, and loss of perceived role within social and spiritual domains also emerged as being significant to individuals.
CONCLUSION: People with advanced illness living with breathlessness have concerns in multiple domains, supporting a concept of 'total breathlessness'. This adapted model can help to guide comprehensive clinical assessment, and inform future outcome measurement in clinical practice and research.
This article describes the author's program of clinical research focused on assessment and treatment of respiratory distress among critically ill patients at the end of life. Dyspnea is a subjective experience of breathing discomfort that occurs in the presence of cardiopulmonary and neuromuscular diseases. Dyspnea is one of the most common and most distressing symptoms experienced by critically ill patients. Many critically ill patients, particularly those not expected to survive, become cognitively impaired or unconscious and lose the ability to report symptoms, although dyspnea can be known only from a patient's report. When self-reporting ability is lost, the critical care nurse must rely on signs indicative of a patient's respiratory distress. The critically ill patient unable to self-report is vulnerable to under-recognition of symptom distress and subsequent over-treatment or undertreatment. When the patient is dying, there is only 1 chance to optimize the assessment and treatment of symptoms.
The aim of the study was to explore trajectories of breathlessness intensity by function and life-limiting illness diagnosis in the last 3 weeks of life in palliative care patients.
A prospective, consecutive cohort study obtained point-of-care data of patients of Silver Chain Hospice Care Service (Perth, Australia) over the period 2011–2014 (n=6801; 51 494 data-points). Breathlessness intensity (0–10 numerical rating scale) and physical function (Australia-modified Karnofsky Performance Status (AKPS)) were measured at each visit. Time was anchored at death. Breathlessness trajectory was analysed by physical function and diagnosis using mixed effects regression.
Mean±sd age was 71.5±15.1 years and 55.2% were male, most with cancer. The last recorded AKPS was >40 for 26.8%. Breathlessness was worst in people with cardiorespiratory disease and AKPS >40, and breathlessness in the last week of life increased most in this group (adjusted mean 2.92 versus all others 1.51; p=0.0001). The only significant interaction was with diagnosis and function in the last week of life (p<0.0001).
Breathlessness is more intense and increases more in people with better function and cardiorespiratory disease immediately before death. Whether there are reversible causes for these people should be explored prospectively. Omitting function from previous population estimates may have overestimated breathlessness intensity for many patients in the days preceding death.
Background: Breathlessness is a common symptomin people with advanced disease. The most effective treatments are aimed at treating the underlying cause of the breathlessness but this may not be possible and symptomatic treatment is often necessary. Strategies for the symptomatic
treatment of breathlessness have never been systematically evaluated. Opioids are commonly used to treat breathlessness: themechanisms underlying their effectiveness are not completely clear and there have been few good-sized trials in this area.
Objectives: To determine the effectiveness of opioid drugs given by any route in relieving the symptom of breathlessness in patients who are being
Search strategy: An electronic search was carried out of Medline, Embase, CINAHL, The Cochrane Library, Dissertation Abstracts, Cancercd and
SIGLE. Review articles and reference lists of retrieved articles were hand searched. Date of most recent search: May 1999.
Selection criteria: Randomised double-blind, controlled trials comparing the use of any opioid drug against placebo for the relief of breathlessness were
included. Patients with any illness suffering from breathlessness were included and the intervention was any opioid, given by any route,
in any dose.
Data collection and analysis: Studies identified by the search were imported into a reference manager database. The full texts of the relevant studies were retrieved and data were independently extracted by two review authors. Studies were quality scored according to the Oxford Quality scale. The primary outcome measure used was breathlessness and the secondary outcome measure was exercise tolerance. Studies were divided
into non-nebulised and nebulised and were analysed both separately and together. A qualitative analysis was carried out of adverse
effects of opioids. Where appropriate, meta-analysis was carried out.
Main results: Eighteen studies were identified of which nine involved the non-nebulised route of administration and nine the nebulised route. A
small but statistically significant positive effect of opioids was seen on breathlessness in the analysis of studies using non-nebulised
opioids. There was no statistically significant positive effect seen for exercise tolerance in either group of studies or for breathlessness in
the studies using nebulised opioids.
Authors’ conclusions: There is evidence to support the use of oral or parenteral opioids to palliate breathlessness although numbers of patients involved in the studies were small. No evidence was found to support the use of nebulised opioids. Further research with larger numbers of patients,
using standardised protocols and with quality of life measures is needed.
INTRODUCTION: Oxygen therapy for the management of breathlessness remains controversial and little information is available regarding the practice of using oxygen at end of life. Oxygen use in end-of-life care is increasingly being questioned, while the use of oxygen for routine "comfort care" at end of life continues.
OBJECTIVE: The purpose of this study was to investigate the use of oxygen at the end of life and to understand its role in contemporary palliative care practice.
METHODS: The project involved a survey to learn about medical facility practices regarding the use of oxygen at the end of life and attitudes and beliefs regarding these practices, specifically the opinion of whether or not oxygen prolongs the dying process at the end of life. Questionnaires were mailed to 42 directors, coordinators, or managers of palliative care services in hospitals throughout Wisconsin. Twenty-five surveys were returned for a response rate of 59.5%.
RESULTS: Forty-three percent of respondents believed that oxygen use at the very end of life affects the timeline of natural death by prolonging the dying process. Ninety-six percent of the respondents' facilities had a standard "comfort care" protocol for end-of-life patients that offered oxygen, regardless of whether patients had breathlessness or not. Respondents cited reasons that staff might use oxygen for these patients: patient comfort, family request, emotional comfort of family, prolongation of life when that was a patient goal, emotional comfort of staff. Respondents also cited reasons that staff might not use oxygen for these patients: oxygen did not seem to bring comfort, oxygen was an irritant to patient, prolongation of natural death was not a patient/family goal, oxygen use did not add to the emotional comfort of patient/family/staff.
CONCLUSION: Current practice on oxygen use in palliative care was identified and the information helps to determine how decisions are made regarding oxygen use. The research adds to palliative care practice knowledge and supports continuing research and dialogue on practice issues.
Symptom management is an important part of both palliative care and end-of-life care. This article will examine the recent research evidence about drugs commonly used for symptom management in adult patients receiving palliative care. In particular, the management of symptoms where recent palliative care-based evidence has changed recommended practice will be reviewed. This includes: breathlessness, delirium, nausea and vomiting in bowel obstruction, opioid-induced constipation and upper respiratory tract secretions. For each symptom, a review of recent pharmacological evidence has been undertaken, with emphasis on potential important changes to physicians' practice.
The aim of this review is to present the way in which episodic breathlessness (EB) has been recognized over the years, with regard to definition, characteristics, and management of these acute episodes that have serious consequences for patients. EB is characterized by a sudden increase in intensity of dyspnea over a short duration of time, leading to high levels of anxiety. A significant aggravation of dyspnea may occur in patients with a background of dyspnea or intermittently even without basal breathlessness. Often, known precipitating factors may trigger EB. Flares of breathlessness are accompanied by degrees of psychological distress, although it is unclear whether psychological factors may precede or be induced by EB. In any case, there is a reinforcing circuit. The duration of EB ranges from 10-30 min. Given the specific temporal pattern, requiring rapid intervention, substances with a short onset of action are suitable to overlap this phenomenon. Short-onset opioids could provide a clinical effect overlapping the onset and duration of an episode, resembling what has been largely reported for breakthrough pain. Although data are still insufficient to suggest specific recommendations, strategies such as avoiding exertion, pacing or using devices, or keeping calm have been described. Few controlled studies have investigated the effects of different formulations of opioids. Some data were gathered from studies assessing the pre-emptive use of rapid onset opioids, such as transmucosal preparations of fentanyl, followed by a provocative test, while other studies attempted to reproduce real-life conditions, given as needed. All these trials were insufficiently powered to address the efficacy of fentanyl products over oral morphine or placebo, reflecting the difficulties in patient recruiting and finalizing the studies. Strategies to prevent the occurrence of EB should be taken into consideration, including optimization of the condition of persistent dyspnea or treating psychologic or environmental causes.