Context: Patients with advanced chronic obstructive pulmonary disease (COPD) can develop increasing breathlessness, which can persist despite optimal medical management—refractory breathlessness. Management can be challenging for all clinicians and requires a broad approach that includes optimization of disease directed therapies, non-pharmacological strategies to manage breathlessness and for some patients opioids.
Objectives: To explore the approaches to breathlessness management and palliative care undertaken by Australian General Practitioners (GP) for patients with severe COPD and refractory breathlessness.
Methods: A case-vignette based survey was conducted with Australian GPs to determine their approaches to breathlessness management and palliative care in COPD.
Results: Of the 137 GPs, 66% recommended commencing an additional medication to manage refractory breathlessness. Thirty-eight GPs (28%) recommended opioids and 26 (19%) recommended guideline discordant treatments. Two-thirds of GPs had concerns regarding the use of opioids in COPD. Half (55%) of GPs were comfortable providing general palliative care to patients with COPD and 62 (45%) had referred patients with COPD to specialist palliative care services. Most respondents wanted further training to manage severe COPD and severe chronic breathlessness.
Conclusion: Most GPs recognized and were willing to add specific treatments for severe chronic breathlessness. However, experience prescribing opioids for severe chronic breathlessness was low, with many practitioners holding significant concerns regarding adverse effects. Many GPs are uncomfortable offering a palliative approach to their COPD patients, yet these patients are not routinely referred to specialist palliative care services despite their immense needs. GPs therefore desire education and support to overcome these barriers.
AIM: To characterize episodic breathlessness (EB) in patients with advanced cancer, and to determine factors influencing its clinical appearance.
METHODS: A consecutive sample of advanced cancer patients admitted to an acute palliative care unit was surveyed. Continuous dyspnea and EB were measured by a numerical scale. The use of drugs used for continuous dyspnea and EB was recorded. Patients were asked about the characteristics of EB (frequency, intensity, duration and triggers). The Multidimensional dyspnea profile (MDP), the Brief dyspnea inventory (BDI), the Athens sleep scale (AIS) and the Hospital Anxiety and Depression Scale (HADS) were also administered.
RESULTS: From 439 advanced cancer patients surveyed, 34 and 27 patients had EB, without and with background dyspnea, respectively. The mean intensity and the number of episodes were higher in patients with background dyspnea (p < 0.0005 and p = 0.05, respectively). No differences in duration were observed. Most episodes lasted <10 min. A recognizable cause triggering EB was often found. The presence of both background dyspnea and EB was associated with higher values of MDP and BDI. EB was independently associated with frequency and intensity of background dyspnea (OR = 20.9, 95% CI (Confidence interval) 9.1-48.0; p < 0.0005 and OR = 1.97, 95% CI 1.09-3.58; p = 0.025, respectively) and a lower Karnofsky level (OR = 0.96, 95%CI 0.92-0.98, p = 0.05).
DISCUSSION: EB may occur in patients with and without continuous dyspnea, and is often induced by physical and psychological factors. EB intensity is higher in patients with continuous dyspnea. The duration was often so short that the use of drugs, as needed, may be too late, unless administered pre-emptively when the trigger was predictable.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Introduction: A significant proportion of patients with advanced primary or metastatic intrathoracic malignancy will eventually develop central airway obstruction. The morbidity associated with malignant airway obstruction (MAO) is considerable and the management is difficult. Our aim was to evaluate the outcomes of tracheobronchial stenting in patients with MAO and its role in palliative care.
Material and Methods: This retrospective study involved a consecutive case series of patients with advanced cancer with MAO who underwent tracheobronchial stenting between August 2014 and August 2019. The European Cooperative Oncology Group (ECOG) scale was used to evaluate patient functional status before and after tracheobronchial stenting. Univariate survival analysis included Kaplan-Meier curves with Log-Rank test, while Cox regression was used as a multivariate analysis.
Results: We included 28 patients with median age of 55.0 years (interquartile range = 49.3-66.5) and 89.3% male. The most frequent primary tumour was the esophagus followed by lungs. The majority of the patients (75%) expressed immediate symptom relief after stenting and there was a significant improvement in the mean ECOG performance status (PS; P = .005). There was no intraprocedure mortality and complications were observed in 6 patients. The median survival after airway stenting was 39.0 days (95% CI = 32.2-45.8) with poorer PS after stent insertion associated with lower overall survival (hazard ratio = 2.3 [95% CI = 1.1-4.9], P = .030) on multivariate analysis.
Conclusion: Airway stent is a safe and effective procedure that offers rapid palliation of symptoms with no major complications. Therefore, stent placement should be considered as part of the treatment of patients with terminal cancer.
Background: Chronic breathlessness is a disabling syndrome that profoundly impacts patients’ and caregivers’ lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving.
Aim: To understand patients’ and caregivers’ (1) perspectives and experiences of driving with chronic breathlessness; and (2) perceived impact of regular, low-dose, sustained-release morphine on driving.
Design: A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (<=32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted.
Setting/participants: Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients (n = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers (n = 9).
Results: Participants were interviewed at home. Eleven received morphine 8–32 mg. Three themes emerged: (1) independence; (2) breathlessness’ impact on driving; and (3) driving while taking regular, low-dose, sustained-release morphine.
Conclusion: Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.
We present a case of a 64-year-old woman with stage 1 breast cancer. She underwent a modified radical mastectomy, followed by chemotherapy. She reported physical and psychosocial suffering due to her disease and treatment. Four weekly sessions of guided 30-min mindful breathing were delivered by the palliative care team to ease her suffering. The patient reported feelings of calmness, peace and relaxation after each session, with decrease in suffering, negative emotions and physical discomfort. This is the first report on the use of guided 30-min mindful breathing in palliating suffering of a patient with cancer.
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.