Background
This is an updated version of the original Cochrane review published in Issue 1, 2010, on 'Benzodiazepines for the relief of breathlessness in advanced malignant and non‐malignant diseases ...in adults'. Breathlessness is one of the most common symptoms experienced in the advanced stages of malignant and non‐malignant disease. Benzodiazepines are widely used for the relief of breathlessness in advanced diseases and are regularly recommended in the literature. At the time of the previously published Cochrane review, there was no evidence for a beneficial effect of benzodiazepines for the relief of breathlessness in people with advanced cancer and chronic obstructive pulmonary disease (COPD).
Objectives
The primary objective of this review was to determine the efficacy of benzodiazepines for the relief of breathlessness in people with advanced disease. Secondary objectives were to determine the efficacy of different benzodiazepines, different doses of benzodiazepines, different routes of application, adverse effects of benzodiazepines, and the efficacy in different disease groups.
Search methods
This is an update of a review published in 2010. We searched 14 electronic databases up to September 2009 for the original review. We checked the reference lists of all relevant studies, key textbooks, reviews, and websites. For the update, we searched CENTRAL, MEDLINE, and EMBASE and registers of clinical trials for further ongoing or unpublished studies, up to August 2016. We contacted study investigators and experts in the field of palliative care asking for further studies, unpublished data, or study details when necessary.
Selection criteria
We included randomised controlled trials (RCTs) and controlled clinical trials (CCTs) assessing the effect of benzodiazepines compared with placebo or active control in relieving breathlessness in people with advanced stages of cancer, chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), motor neurone disease (MND), and idiopathic pulmonary fibrosis (IPF).
Data collection and analysis
Two review authors independently assessed identified titles and s. Three review authors independently performed assessment of all potentially relevant studies (full text), data extraction, and assessment of methodological quality. We carried out meta‐analysis where appropriate.
Main results
Overall, we identified eight studies for inclusion: seven in the previous review and an additional study for this update. We also identified two studies awaiting classification in this update. The studies were small (a maximum number of 101 participants) and comprised data from a total of 214 participants with advanced cancer or COPD, which we analysed. There was only one study of low risk of bias. Most of the studies had an unclear risk of bias due to lack of information on random sequence generation, concealment, and attrition. Analysis of all studies did not show a beneficial effect of benzodiazepines for the relief of breathlessness (the primary outcome) in people with advanced cancer and COPD (8 studies, 214 participants) compared to placebo, midazolam, morphine, or promethazine. Furthermore, we observed no statistically significant effect in the prevention of episodic breathlessness (breakthrough dyspnoea) in people with cancer (after 48 hours: risk ratio of 0.76 (95% CI 0.53 to 1.09; 2 studies, 108 participants)) compared to morphine. Sensitivity analyses demonstrated no statistically significant differences regarding type of benzodiazepine, dose, route and frequency of delivery, duration of treatment, or type of control. Benzodiazepines caused statistically significantly more adverse events, particularly drowsiness and somnolence, when compared to placebo (risk difference 0.74 (95% CI 0.37, 1.11); 3 studies, 38 participants). In contrast, two studies reported that morphine caused more adverse events than midazolam (RD ‐0.18 (95% CI ‐0.31, ‐0.04); 194 participants).
Authors' conclusions
Since the last version of this review, we have identified one new study for inclusion, but the conclusions remain unchanged. There is no evidence for or against benzodiazepines for the relief of breathlessness in people with advanced cancer and COPD. Benzodiazepines caused more drowsiness as an adverse effect compared to placebo, but less compared to morphine. Benzodiazepines may be considered as a second‐ or third‐line treatment, when opioids and non‐pharmacological measures have failed to control breathlessness. There is a need for well‐conducted and adequately powered studies.
Background:
Few measures capture the complex symptoms and concerns of those receiving palliative care.
Aim:
To validate the Integrated Palliative care Outcome Scale, a measure underpinned by ...extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.
Design:
Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change).
Setting/participants:
In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany
Results:
We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good.
Conclusion:
The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Globally, the number of people affected by coronavirus disease 2019 (COVID-19) is rapidly increasing. In most (>80%), the illness is relatively mild and can be self-managed out of hospital. However, ...in about 20% the illness causes respiratory compromise severe enough to require hospital admission 1. Patients with severe and critical disease need full active treatment. This may include oxygen for hypoxaemia and ventilatory support, along with optimal management of complications,
e.g.
super-imposed bacterial infection, and any underlying co-morbidities,
e.g.
chronic obstructive pulmonary disease, congestive heart failure. To date, no antiviral agent has shown to be effective in treating the disease 2.
The COVID-19 pandemic has affected health care systems worldwide. Multidisciplinary teams provide specialist palliative home care (SPHC) for patients with incurable, severe, progressive diseases. ...These patients are at the same time at high risk, if infected, highly constricted by containment measures, and dependent on support.
To explore i) how German SPHC teams were affected by the pandemic during the first wave, ii) which challenges they faced, and iii) which strategies helped to handle the consequences of the COVID-19 pandemic for providing good SPHC.
Four focus groups (with representatives of 18 SPHC teams) and five guided interviews with stakeholders were conducted and analysed using qualitative content analysis.
Seven key categories emerged from the data. A category in the background describes dependence on organizational characteristics (e.g. sponsorship), which varied by regional factors. Information management was a challenge to SPHC teams, as they had to collect, interpret and adapt, and disseminate information. They reported a shift in patient care because of the COVID-19 pandemic, due to restricted home visits, visitation ban in nursing homes, and difficulties for hospital, hospice and nursing home admissions. Measures to reduce risk of infection impeded teamwork. Teams relied upon their local networks in crisis management, but felt often overlooked by local health authorities. Their respective SPHC state associations supported them in information management and exchange.
The pandemic has severely impacted home care for especially vulnerable seriously ill and dying people. A good network with local health providers and authorities could help to harmonize local regulations and ensure quality care for all patient groups. SPHC teams could play an important role in caring for palliative patients with COVID-19 who are not admitted to a hospital due to preferences or resources.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The SARS-CoV-2 (COVID-19) pandemic is posing major challenges for health care systems. In Germany, one such challenge has been that adequate palliative care for the severely ill and dying (with and ...without COVID-19), as well as their loved ones, has not been available at all times and in all settings., the pandemic has underlined the significance of the contribution of general practitioners (GPs) to the care of severely ill and dying patients. To describe GPs' experiences, challenges and perspectives with respect to end-of-life care during the first peak of the pandemic (spring 2020) in Germany. In November and December 2020, a link to an Unipark online survey was sent to GPs registered on nationwide distribution lists. In total, 410 GPs responded; 61.5% indicated that the quality of their patients' end-of-life care was maintained throughout the pandemic, 36.8% reported a decrease in quality compared to pre-pandemic times. Of the GPs who made home visits to severely ill and dying patients, 61.4% reported a stable number of visits, 28.5% reported fewer visits. 62.7% of the GPs reported increased telephone contact and reduced personal contact with patients; 36.1% offered video consultations in lieu of face-to-face contact. The GPs reported that relatives were restricted (48.5%) or prohibited from visiting (33.4%) patients in nursing homes. They observed a fear of loneliness among patients in nursing homes (91.9%), private homes (87.3%) and hospitals (86.1%). The present work provides insights into the pandemic management of GPs and supports the development of a national strategy for palliative care during a pandemic.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Abstract
Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, ...when PC needs emerge. These needs can be of physical, emotional, social, or spiritual nature. This document encourages the use of validated assessment tools to recognize such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional, and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons’ needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.
Dyspnea is a common and highly distressing symptom in patients with advanced illnesses. Many patients continue to experience chronic dyspnea despite optimal management of underlying disease(s) and ...various non-pharmacologic interventions, necessitating the consideration of pharmacologic therapies for palliation of dyspnea. One commonly asked question by clinicians is whether benzodiazepines have a role in the palliation of dyspnea. In this “Controversies in Palliative Care” article, three groups of thought leaders independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. All three groups suggest that benzodiazepines alone do not confer a benefit for dyspnea in advanced illnesses based on existing data. They also expressed concerns about the potential adverse effects such as delirium and drowsiness and recommended against benzodiazepines as first line pharmacologic therapy. Some groups suggest that benzodiazepines may be used in highly selected patients with severe anxiety associated with dyspnea. Some investigators may also consider the adjunctive use of benzodiazepines in patients with severe dyspnea despite opioids, particularly if life expectancy is limited. Benzodiazepines also have a role in palliative sedation for refractory dyspnea in the last days of life. More research is needed to confirm the benefit of benzodiazepines in these populations.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Episodic breathlessness is characterized by a severe worsening of breathlessness intensity that goes beyond usual fluctuations. Episodes are usually short; therefore, nonpharmacological strategies ...(cognitive and behavioral) seem most promising to be beneficial. Which strategies—delivered separately or in combination—might be most effective and feasible remains unclear.
The Delphi survey selects and determines different nonpharmacological strategies for coping with episodic breathlessness to develop a brief cognitive and behavioral intervention for the management of episodic breathlessness.
Using an online Delphi survey comprising three rounds, international, multidisciplinary experts in breathlessness summarized and determined cognitive and behavioral strategies. The a priori target agreement for close-ended questions was 70%.
Experts (n = 41/87; n = 45/85; n = 36/85) agreed on 15 of the 31 cognitive and behavioral strategies. Based on the panellists' opinion, the final version of the cognitive and behavioral intervention comprised the following characteristics: individually tailored intervention, a high proportion of communication, short duration, the involvement of carers, and use of the Breathing, Thinking, Functioning Model of Spathis et al. Consensus upon the delivery of the subsequent strategies within the intervention was reached: handheld fan, forward lean, diaphragmatic breathing, distraction, pursed lips breathing, long breaths out, and relaxation training.
Using the consented nonpharmacological strategies, a brief cognitive and behavioral intervention was developed that balances between individualization and standardization of the intervention.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the ...experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2 or not. As part of this, experiences related to patients' end-of-life care, saying goodbye, visiting restrictions and communication with the healthcare team were assessed.
An open observational post-bereavement online survey with free text options was conducted with 81 bereaved relatives from people who died during the pandemic in Germany, with and without SARS-CoV2 diagnosis.
67/81 of the bereaved relatives were female, with a mean age of 57.2 years. 50/81 decedents were women, with a mean age of 82.4 years. The main underlying diseases causing death were cardiovascular diseases or cancer. Only 7/81 of the patients were infected with SARS-CoV2. 58/81 of the relatives felt burdened by the visiting restrictions and 60/81 suffered from pandemic-related stress. 10 of the patients died alone due to visiting restrictions. The burden for relatives in the hospital setting was higher compared to relatives of patients who died at home. 45/81 and 44/81 relatives respectively reported that physicians and nurses had time to discuss the patient's condition. Nevertheless, relatives reported a lack of proactive communication from the healthcare professionals.
Visits of relatives play a major role in the care of the dying and have an impact on the bereavement of relatives. Visits must be facilitated, allowing physical contact. Additionally, virtual contact with the patients and open, empathetic communication on the part of healthcare professionals is needed.
German Clinical Trials Register (DRKS00023552).
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CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Purpose
While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to ...life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases.
Methods
Face-to-face in-depth interviews were conducted with patients who were 18–39 years old at diagnosis. The interviews took place 2–5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis.
Results
Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs.
Conclusion
AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease.
Trial registration number
DRKS00030277; September 27, 2022 (German Clinical Trials Register).
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
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