Steffen T. Simon

Priorities for treatment, care and information if faced with serious illness: a comparative population-based survey in seven European countries.

Background: Health-care costs are growing, with little population-based data about people’s priorities for end-of-life care, to guide service development and aid discussions. Aim: We examined variations in people’s priorities for treatment, care and information across seven European countries. Design: Telephone survey of a random sample of households; we asked respondents their priorities if ‘faced with a serious illness, like cancer, with limited time to live’ and used multivariable logistic regressions to identify associated factors. Setting/participants: Members of the general public aged ≥16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Results: In total, 9344 individuals were interviewed. Most people chose ‘improve quality of life for the time they had left’, ranging from 57% (95% confidence interval: 55%–60%, Italy) to 81% (95% confidence interval: 79%–83%, Spain). Only 2% (95% confidence interval: 1%–3%, England) to 6% (95% confidence interval: 4%–7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%–17%, Spain) to 40% (95% confidence interval: 37%–43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities. Conclusions: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.

To be involved or not to be involved: A survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe

Background: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand. Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors. Design: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain. Results: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93–2.77), (odds ratio = 1.33–1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14–1.41), (odds ratio = 1.30, 95% confidence interval = 1.20–1.42)); younger-middle age ((30–59 years: odds ratio = 1.24–1.40), (50–59 years: odds ratio = 1.23, 95% confidence interval = 1.04–1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49–1.58), (odds ratio = 1.35–1.53)). Those with increased financial hardship (odds ratio = 0.64–0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60–0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54–0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18–1.53). Conclusions: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.

Episodes of breathlessness: Types and patterns – a qualitative study exploring experiences of patients with advanced diseases

Background: Despite the high prevalence and impact of episodic breathlessness, information about characteristics and patterns is scarce. Aim: To explore the experience of patients with advanced disease suffering from episodic breathlessness, in order to describe types and patterns. Design and participants: Qualitative design using in-depth interviews with patients suffering from advanced stages of chronic heart failure, chronic obstructive pulmonary disease, lung cancer or motor neurone disease. As part of the interviews, patients were asked to draw a graph to illustrate typical patterns of breathlessness episodes. Interviews were tape-recorded, transcribed verbatim and analysed using Framework Analysis. The graphs were grouped according to their patterns. Results: Fifty-one participants (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13 lung cancer and 9 motor neurone disease) were included (mean age 68.2 years, 30 of 51 men, mean Karnofsky 63.1, mean breathlessness intensity 3.2 of 10). Five different types of episodic breathlessness were described: triggered with normal level of breathlessness, triggered with predictable response (always related to trigger level, e.g. slight exertion causes severe breathlessness), triggered with unpredictable response (not related to trigger level), non-triggered attack-like (quick onset, often severe) and wave-like (triggered or non-triggered, gradual onset). Four patterns of episodic breathlessness could be identified based on the graphs with differences regarding onset and recovery of episodes. These did not correspond with the types of breathlessness described before. Conclusion: Patients with advanced disease experience clearly distinguishable types and patterns of episodic breathlessness. The understanding of these will help clinicians to tailor specific management strategies for patients who suffer from episodes of breathlessness.

‘Burden to others’ as a public concern in advanced cancer: a comparative survey in seven European countries

BackgroundEurope faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this.MethodsTelephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As ‘burden to others’ showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression.ResultsOverall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80).ConclusionsWhen imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.

Characteristics of episodic breathlessness as reported by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study

Background: Episodic breathlessness is one form of refractory breathlessness. Better understanding of the symptom is necessary for effective management. Aim: The aim was to describe the characteristics of episodic breathlessness in patients with advanced chronic obstructive pulmonary disease or lung cancer. Design: This is a longitudinal cohort study. Outcomes were assessed monthly by up to 13 telephone interviews: peak severity (modified Borg scale: 0–10), duration, frequency, and timing of breathlessness episodes. Data from each episode were pooled and analyzed using descriptive statistics. Associations between outcomes were explored by correlation coefficients. Setting/participants: Patients with chronic obstructive pulmonary disease (Global Initiative for Chronic Obstructive Lung Disease classification stage III or IV) or primary lung cancer (any stage) were recruited in two inpatient units (internal medicine) and two outpatient clinics in Oldenburg, Germany. Results: A total of 82 patients (50 chronic obstructive pulmonary disease, 32 lung cancer), mean age (standard deviation) 67 years (8 years) and 36% female, were included reporting on 592 breathlessness episodes (chronic obstructive pulmonary disease: 403, lung cancer: 189). Peak severity was perceived significantly higher in chronic obstructive pulmonary disease patients than in lung cancer patients (mean (standard deviation) Borg scale: 6.2 (2.1) vs 4.2 (1.9); p < 0.001). Episodes described by chronic obstructive pulmonary disease patients were longer than those described by lung cancer patients (median (range): 7 min (0–600) vs 5 min (0.3–120), p = 0.002)). Frequency was similar and most often daily in both groups. Severity and frequency of episodes were correlated in lung cancer patients (r = 0.324, p = 0.009). Conclusion: Most breathlessness episodes are short (minutes) and severe with significant differences between chronic obstructive pulmonary disease and lung cancer patients. Effective management strategies are warranted to improve symptom relief and coping.

Management of refractory breathlessness in patients with advanced cancer

ZusammenfassungAtemnot ist ein häufiges und belastendes Symptom bei Patienten mit fortgeschrittener Tumorerkrankung. Die Behandlung umfasst nicht-pharmakologische und pharmakologische Maßnahmen, die am besten miteinander kombiniert werden. Es gibt einige Evidenz überwiegend von Studien bei COPD-Patienten für den Einsatz von Rollatoren, neuro-elektrischer Nervenstimulation, Handventilatoren und Atemnotambulanzen. Opioide sind die Medikamente der Wahl bei der Behandlung der Atemnot. Für den routinemäßigen Einsatz von Benzodiazepinen, anderen Anxiolytika, Antidepressiva, Phenothiazinen, inhaliertem Furosemid und Sauerstoff gibt es derzeit keine ausreichende Evidenz.SummaryBreathlessness is a common and distressing symptom in advanced cancer. Management comprises non-pharmacological and pharmacological interventions, which are best combined. There is some evidence mainly derived from COPD studies for walking aids, neuro-muscular electrical stimulation, fan and breathlessness services. Opioids are the drugs of choice for pharmacological management of breathlessness. There is currently not enough evidence to support the routine use of benzodiazepines, other anxiolytics, antidepressants, phenothiazines, inhaled furosemide and oxygen.

The need to research refractory breathlessness.

The joint American Thoracic Society (ATS)/European Respiratory Society (ERS) statement “An official American Thoracic Society/European Respiratory Society statement: research questions in COPD” by Celli et al. [1] is a timely summary of the current evidence and the questions that arise directly from where that evidence reaches its limits. Such documents are crucial in framing research strategies for researchers and research funders. High-quality research is needed to improve quality of life for people with chronic refractory breathlessness in COPD http://ow.ly/Q2GDY

Inhaled nebulized and intranasal opioids for the relief of breathlessness.

Purpose of reviewInhaled nebulized and intranasal opioid administration is available with a proven short onset of action for the relief of pain. As breathlessness episodes are short, these routes of administration seem to be attractive for breathlessness management. This review describes the recent studies evaluating the effectiveness of inhaled nebulized and intranasal application of opioids for patients suffering from refractory breathlessness. Recent findingsSince 2012, one systematic review and three primary studies have been identified. The systematic review summarized five studies including seventy patients testing nebulized fentanyl and two studies including five patients evaluating intranasal application. Two randomized controlled trials tested inhaled fentanyl or morphine and one retrospective chart review described the application of intranasal fentanyl in newborn babies. Inhaled fentanyl did not improve the intensity or unpleasantness of perceived dyspnea, but the rate of increase in dyspnea intensity and unpleasantness ratings between isotime and peak exercise was less after treatment with fentanyl. Inhaled morphine improved breathlessness in chronic obstructive pulmonary disease patients. SummaryThere is currently not enough evidence to support the use of inhaled application of opioids for the relief of breathlessness. There are no controlled trials assessing the efficacy and effectiveness of intranasal opioid application, but a pilot trial is underway to provide preliminary data.

Management of refractory breathlessness in patients with advanced cancer.

ZusammenfassungAtemnot ist ein häufiges und belastendes Symptom bei Patienten mit fortgeschrittener Tumorerkrankung. Die Behandlung umfasst nicht-pharmakologische und pharmakologische Maßnahmen, die am besten miteinander kombiniert werden. Es gibt einige Evidenz überwiegend von Studien bei COPD-Patienten für den Einsatz von Rollatoren, neuro-elektrischer Nervenstimulation, Handventilatoren und Atemnotambulanzen. Opioide sind die Medikamente der Wahl bei der Behandlung der Atemnot. Für den routinemäßigen Einsatz von Benzodiazepinen, anderen Anxiolytika, Antidepressiva, Phenothiazinen, inhaliertem Furosemid und Sauerstoff gibt es derzeit keine ausreichende Evidenz.SummaryBreathlessness is a common and distressing symptom in advanced cancer. Management comprises non-pharmacological and pharmacological interventions, which are best combined. There is some evidence mainly derived from COPD studies for walking aids, neuro-muscular electrical stimulation, fan and breathlessness services. Opioids are the drugs of choice for pharmacological management of breathlessness. There is currently not enough evidence to support the routine use of benzodiazepines, other anxiolytics, antidepressants, phenothiazines, inhaled furosemide and oxygen.

Breathlessness and crises in the context of advanced illness: A comparison between COPD and lung cancer patients

OBJECTIVE The objective of this study was to explore and contrast the experience and meaning of breathlessness in patients with chronic obstructive pulmonary disease (COPD) or lung cancer at the end of life. METHOD We conducted a qualitative study embedded in a longitudinal study using topic-guided in-depth interviews with a purposive sample of patients suffering from breathlessness affecting their daily activities due to advanced (primary or secondary) lung cancer or COPD stage III/IV. All interviews were audiotaped, transcribed verbatim, and analyzed using framework analysis. RESULTS Ten COPD and eight lung cancer patients were interviewed. Both groups reported similarities in their experience. These included exertion through breathlessness throughout the illness course, losses in their daily activities, and the experience of breathlessness leading to crises. The main difference was the way in which patients adapted to their particular illness experience and the resulting crises over time. While COPD patients more likely sought to get their life with breathlessness under control, speaking of daily living with breathlessness under certain conditions, the participating lung cancer patients often faced the possibility of death and expressed a need for security. SIGNIFICANCE OF RESULTS Breathlessness leads to crises in patients with advanced disease. Although experiences of patients are similar, reactions and coping mechanisms vary and are more related to the disease and the stage of disease.