Dataset Information

Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

ABSTRACT:

Background

In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in culturally polymorphic countries, there are variations in the end-of-life practices between linguistic regions and that a linguistic region shares many cultural characteristics with the neighbouring country.

Objectives

This study aimed to explore the attitudes of palliative care physicians from the French-speaking part of Switzerland on the question of whether CDSUD should be legally regulated in the country, and to identify their arguments. Our study also aimed to assess whether a hypothetical Swiss law on CDSUD should be similar to the current legal regulation of this practice in France.

Design

We conducted a multicentre exploratory qualitative study based on face-to-face interviews with palliative care physicians in the French-speaking part of Switzerland.

Methods

We analysed the interview transcripts using thematic analysis, combining deductive and inductive coding.

Results

Most of the participants were opposed to having specific legal regulation of CDSUD in Switzerland. Their arguments were diverse: some focused on medical and epistemological aspects of CDSUD, whereas others emphasized the legal inconvenience of having such regulation. None had the opinion that, if CDSUD were legally regulated in Switzerland, the regulation should be similar to that in France.

Conclusion

This study allows to better understand why palliative care physicians in French-speaking Switzerland may be reluctant to have legal regulation of CDSUD. Further studies covering the whole country would be needed to gain a more complete picture of Swiss palliative care physicians on this question.

SUBMITTER: Tomczyk M

PROVIDER: S-EPMC10752051 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Publications

Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

Tomczyk Martyna M Andorno Roberto R Jox Ralf J RJ

Palliative care and social practice 20231225

<h4>Background</h4>In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in culturally polymorphic countries, there are variations in the end-of-life practices between linguistic regions and that a linguistic region shares m ...[more]

PMID: 38152555

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Project description:BackgroundContinuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress.MethodsThis study is an international qualitative interview study involving interviews with physicians, nurses, and relatives of deceased patients in the UK, The Netherlands and Belgium (the UNBIASED study) about a case of continuous sedation at the end of life they were recently involved in. All interviews were transcribed verbatim and analysed by staying close to the data using open coding. Next, codes were combined into larger themes and categories of codes resulting in a four point scheme that captured all of the data. Finally, our findings were compared with others and explored in relation to theories in ethics and sociology.ResultsThe participants' responses can be captured as different dimensions of 'closeness', i.e. the degree to which one feels connected or 'close' to a certain decision or event. We distinguished four types of 'closeness', namely emotional, physical, decisional, and causal. Using these four dimensions of 'closeness' it became possible to describe how physicians, nurses, and relatives experience their involvement in cases of continuous sedation until death. More specifically, it shined a light on the everyday moral reasoning employed by care providers and relatives in the context of continuous sedation, and how this affected the emotional impact of being involved in sedation, as well as the perception of their own moral responsibility.ConclusionFindings from this study demonstrate that various factors are reported to influence the degree of closeness to continuous sedation (and thus the extent to which carers feel morally responsible), and that some of these factors help care providers and relatives to distinguish continuous sedation from euthanasia.

Project description:IntroductionIn case of untreatable suffering at the end of life, continuous sedation until death (CSD) may be the only treatment option left. Because these patients cannot communicate anymore, caregivers have to rely on behavioral observation to assess the patient's comfort. Recently, however, a number of studies from the neurosciences have shown that sometimes consciousness and pain are undetectable with these traditional behavioral methods. The aim of this study was to find out if subjective caregiver assessments of consciousness and pain would be confirmed by objective neurophysiological measures.MethodsIn this prospective observational study, we observed patients from the start of palliative sedation until death. Subjective caregiver assessments of level of consciousness and pain based on behavioral observations were compared with objective measures from neurophysiological monitoring devices.ResultsWe collected and analyzed 108 subjective caregiver assessments in a sample of 12 patients and 32 assessments by traditionally used observational scales. We compared these with objective neurophysiological measures. Sensitivity and specificity of caregivers' subjective assessments of consciousness was 23.6 and 91.1% respectively, with an accuracy of 54.0% and interrater reliability (κ) of 0.13. For pain, this was 0 and 94.79%, respectively, an accuracy of 88%, and an inter-rater reliability (κ) of - 0.063. Agreement between caregivers' subjective assessments and objective neurophysiological measures of consciousness and pain was very poor.ConclusionsCaregivers' subjective assessment of level of consciousness and pain during CSD is unreliable compared with objective neurophysiological monitoring. Our results suggest that assessments of patient comfort during CSD could have been improved substantially by including objective monitoring of level of consciousness and pain.Trial registrationThe protocol for this observational study has been registered retrospectively at Clinical-Trials.gov (ID NCT03273244).

Project description:BackgroundPalliative sedation (PS) is an intervention to treat refractory symptoms and to relieve suffering at the end of life. Its prevalence and practice patterns vary widely worldwide. The aim of our study was to evaluate the frequency, clinical indications and outcomes of PS in advanced cancer patients admitted to our tertiary comprehensive cancer center.MethodsWe retrospectively studied the use of PS in advanced cancer patients who died between March 1st, 2012 and December 31st, 2014. PS was defined as the use of continuous infusion of midazolam or neuroleptics for refractory symptoms in the end of life. This study was approved by the Research Ethics Committee of our institution (project number 2481-15).ResultsDuring the study period, 552 cancer patients died at the institution and 374 met the inclusion criteria for this study. Main reason for exclusion was death in the Intensive Care Unit. Among all included patients, 54.2% (n = 203) received PS. Patients who received PS as compared to those not sedated were younger (67.8 vs. 76.4 years-old, p < 0.001) and more likely to have a diagnosis of lung cancer (23% vs. 14%, p = 0.028). The most common indications for sedation were dyspnea (55%) and delirium (19.7%) and the most common drugs used were midazolam (52.7%) or midazolam and a neuroleptic (39.4%). Median initial midazolam infusion rate was 0.75 mg/h (interquartile range - IQR - 0.6-1.5) and final rate was 1.5 mg/h (IQR 0.9-3.0). Patient survival (length of hospital stay from admission to death) of those who had PS was more than the double of those who did not (33.6 days vs 16 days, p < 0.001). The palliative care team was involved in the care of 12% (n = 25) of sedated patients.ConclusionsPS is a relatively common practice in the end-of-life of cancer patients at our hospital and it is not associated with shortening of hospital stay. Involvement of a dedicated palliative care team is strongly recommended if this procedure is being considered. Further research is needed to identify factors that may affect the frequency and outcomes associated with PS.

Project description:BACKGROUND: A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. METHODS/DESIGN: To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve interviews with staff and informal care-givers closely involved in the care of cancer patients who received continuous sedation until death. DISCUSSION: To our knowledge, this is one of the few studies which seek to take a qualitative perspective on clinical decision making surrounding the use of continuous sedation until death and the only one which includes the perspectives of nurses, physicians, as well as bereaved informal care-givers. It has several potential strengths, weaknesses, opportunities and threats associated with the specific design of the study, as well as with the sensitive nature of the topic and the different frameworks for ethical review in the participating countries.

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

Dataset Information

Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

Background

Objectives

Design

Methods

Results

Conclusion

Publications

Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

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