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Terminal sedation continues to fuel debate. When confronted with a patient for whom terminal sedation is considered a possible treatment option, decision making can be difficult. In this paper we focus on the clinical-ethical issues, with an aim to provide clinicians with ways of framing the issue from an ethical point of view. In addition to the clinical-ethical issues, terminal sedation touches upon interesting and complex questions of an essentially philosophical nature. What it means to be a “person” is one such question, and is a topic that is relevant to clinical, daily practice. Accordingly, in the latter part of this paper we draw briefly on selected philosophical positions to elucidate this question. A doctor's belief of what it means to be a “person” might well affect their actions. For example, if a doctor believes terminal sedation involves the destruction of the person, they might not be willing to proceed with it.

Background End-of-life decisions remain controversial. Switzerland, with three main languages shared with surrounding countries and legal suicide assistance, allows exploration of the effects of cultural differences on end-of-life practices within the same legal framework. Methods We conducted a death certificate study on a nationwide continuous random sample of Swiss residents. Using an internationally standardized tool, we sent 4998, 2965, and 1000 anonymous questionnaires to certifying physicians in the German-, French-, and Italian-speaking regions. Results The response rates were 63.5%, 51.9%, and 61.7% in the German-, French-, and Italian-speaking regions, respectively. Non-sudden, expected deaths were preceded by medical end-of-life decisions (MELDs) more frequently in the German- than in the French- or Italian-speaking region (82.3% vs. 75.0% and 74.0%, respectively), mainly due to forgoing life-prolonging treatment (70.0%, 59.8%, 57.4%). Prevalence of assisted suicide was similar in the German- and French-speaking regions (1.6%, 1.2%), with no cases reported in the Italian-speaking region. Patient involvement was smaller in the Italian- than in the French- and German-speaking regions (16.0%, 31.2%, 35.6%). Continuous deep sedation was more frequent in the Italian- than in the French- and German-speaking regions (34.4%, 26.9%, 24.5%), and was combined with MELDs in most cases. Conclusion We found differences in MELD prevalence similar to those found between European countries. On an international level, MELDs are comparably frequent in all regions of Switzerland, in line with the greater role given to patient autonomy. Our findings show how cultural contexts and legislation can interact in shaping the prevalence of MELDs.

BackgroundStudies on forgoing treatment often ignore treatments that are continued until death.ObjectiveTo investigate how often specific treatments are withdrawn or withheld before death and to describe the associated patient, physician, and care characteristics.DesignNational mortality follow-back study in Switzerland in 2013/2014 using a standardized survey to collect information on the patient’s end of life and demographics on the physician.ParticipantsA random sample of adults who died non-suddenly without an external cause and who had met the physician completing the survey (N = 3051).Main MeasuresAny of nine specific treatments was continued until death, withdrawn, or withheld.Key ResultsIn 2242 cases (84%), at least one treatment was either continued until death or withheld or withdrawn. The most common treatment was artificial hydration, which was continued in 23%, withdrawn in 4%, and withheld in 22% of all cases. The other eight treatments were withdrawn or withheld in 70–94% of applicable cases. The impact of physician characteristics was limited, but artificial hydration, antibiotics, artificial nutrition, and ventilator therapy were more likely to be withheld at home and in nursing homes than in the hospitals.ConclusionsLarge differences exist between care settings in whether treatments are continued, withdrawn, or withheld, indicating the different availability of treatment options or different philosophies of care. While certain patient groups are more likely to have treatment withheld rather than attempted, neither patient nor physician characteristics impact the decision to continue or withdraw treatment.

Medical end-of-life decisions (MELD) and shared decision-making are increasingly important issues for a majority of persons at the end of life. Little is known, however, about the impact of physician characteristics on these practices. We aimed at investigating whether MELDs depend on physician characteristics when controlling for patient characteristics and place of death. Using a random sample (N = 8,963) of all deaths aged 1 year or older registered in Switzerland between 7 August 2013 and 5 February 2014, questionnaires covering MELD details and physicians' demographics, life stance and medical formation were sent to certifying physicians. The response rate was 59.4% (N = 5,328). Determinants of MELDs were analyzed in binary and multinomial logistic regression models. MELDs discussed with the patient or relatives were a secondary outcome. A total of 3,391 non-sudden nor completely unexpected deaths were used, 83% of which were preceded by forgoing treatment(s) and/or intensified alleviation of pain/symptoms intending or taking into account shortening of life. International medical graduates reported forgoing treatment less often, either alone (RRR = 0.30; 95% CI: 0.21-0.41) or combined with the intensified alleviation of pain and symptoms (RRR = 0.44; 0.34-0.55). The latter was also more prevalent among physicians who graduated in 2000 or later (RRR = 1.60; 1.17-2.19). MELDs were generally less frequent among physicians with a religious affiliation. Shared-decision making was analyzed among 2,542 decedents. MELDs were discussed with patient or relatives less frequently when physicians graduated abroad (OR = 0.65, 95% CI: 0.50-0.87) and more frequently when physicians graduated more recently; physician's sex and religion had no impact. Physicians' characteristics, including the country of medical education and time since graduation had a significant effect on the likelihood of an MELD and of shared decision-making. These findings call for additional efforts in physicians' education and training concerning end-of-life practices and improved communication skills.

Background Due to the complexity of the provision of care for people with dementia, pain assessment and management is still considered to be lacking. An optimal way to support frontline staff in providing pain assessment and management for people with dementia living in nursing homes has not yet been identified. The success of supporting interventions seems dependent on contextual factors in the nursing homes. This study, therefore, analyzes the feasibility of a nurse-led training intervention, using repeated on-site case studies, in modifying pain intensity and frequency in people with dementia. Methods Using a quasi-experimental design, we undertook a multi-center study of nurse-led training in pain management, with subsequent on-site case studies. Healthcare workers from 3 nursing homes assessed pain in 164 residents with dementia over 147 days. We used mixed-effect growth curve models with spline regression to analyze the data. Results We found that on-site case studies support frontline staff with pain management and assessment. Repeated reflection in case studies led to significantly longer pain free intervals (from 4.7 at baseline to 37.1 days at second follow-up) and decreased frequency of pain events (OR 0.54 at first follow-up and 0.43 at second follow-up). However no trends regarding pain intensity could be found. Therefore, on-site case studies may be valuable for improving pain frequency and pain-free intervals over time. Conclusion This feasibility study shows the potential of on-site support for frontline nursing home staff. On-site case studies may also affect health outcomes in people with dementia. However, the complexity of dementia care necessitates the management of a broader range of needs. Trial registration The study was retrospectively registered on the tenth of January 2017 with the German registry of clinical trials (DRKS00009726).

Background It is estimated that 19 to 83% of people with dementia suffer from pain that is inadequately treated in the last months of life. A large number of healthcare workers who care for these people in nursing homes lack appropriate expertise and may therefore not always recognise, assess and treat pain in those with dementia who have complex problems on time, properly and efficiently. The aim of this intervention trial is to identify care needs of people with dementia suffering from pain living in a nursing home. Methods A quasi-experimental nurse-led intervention trial based on a convenience sample of four nursing homes in the Swiss Canton of Zurich examines the effects on dementia patients ( n  = 411), the healthcare institution and the qualification level of the healthcare workers compared to historical controls, using an event analysis and a multilevel analysis. Healthcare workers will be individually trained how to assess, intervene and evaluate acute and chronic pain. There are three data-monitoring cycles (T0, T1, T2) and two intervention cycles (I1, I2) with a total study duration of 425 days. There is also a process evaluation based on Dobbins analyses that analyse in particular the potentials for change in clinical practice of change agents. Discussion The aim of the intervention trial is to improve pain management strategies in older people with dementia in nursing homes. Clinically significant findings will be expected that will help reduce suffering in the sense of “total pain” for people with dementia. The joint intra- and interdisciplinary collaboration between practice and supply-oriented (nursing) research will have both a lasting effect on the efficiency measurement and provide scientifically sound results. Nursing homes can integrate the findings from the intervention trial into their internal quality control process. The potential for improvements can be directly influenced by the nursing home itself. Trial registration Registration trial number: DRKS00009726 on DRKS, registered 10 January 2017, retrorespectively registered. Clearance certificate is available of the ethics committees of the canton of Thurgau, Switzerland, number: TG K201-02, and Zurich, Switzerland, number: ZH 01–2016.

ABSTRACTBackgroundIn many countries, people over 85 years of age are relocated involuntarily or unplanned to a nursing home. In Switzerland, 43% of elderly over 85 years are admitted to nursing homes after hospital discharge. This percentage is higher than in the USA with 32.5% or in Germany with only 19%. Despite those more frequent Swiss admissions, no research has been conducted exploring how unplanned admissions to nursing homes affect the adaptation. Therefore, the aim of this study was to gain an in-depth understanding into unplanned admissions to nursing homes and to explore its impact on adaptation. MethodsThe study used a qualitative interview design based on Meleis’ transition model. Secondary data analysis was guided by Mayring's qualitative content analysis. Face-to-face interviews with elderly over 77 years ( n = 31) were conducted from a convenience sample in Switzerland between January and March 2013. ResultsThe following four patterns of adaptation emerged from the analysis: “being cut-off,” “being restricted,” “being cared for,” and “moving on.” The patterns evaluate the relocation into nursing homes and provide an opportunity to appraise the stages of adaption. ConclusionsThis study presents a model of analysis to evaluate patterns of adaptation following an unplanned admission to a nursing home after hospital discharge.

BackgroundIn the last decade, the number of patients continuously deeply sedated until death increased up to fourfold. The reasons for this increase remain unclear.ObjectiveTo identify socio-demographic and clinical characteristics of sedated patients, and concurrent possibly life-shortening medical end-of-life decisions.DesignCross-sectional death certificate study in German-speaking Switzerland in 2001 and 2013.ParticipantsNon-sudden and expected deaths (2001: N = 2281, 2013: N = 2256) based on a random sample of death certificates and followed by an anonymous survey on end-of-life practices among attending physicians.Main measuresPhysicians’ reported proportion of patients continuously deeply sedated until death, socio-demographic and clinical characteristics, and possibly life-shortening medical end-of life decisions.Key resultsIn 2013, physicians sedated four times more patients continuously until death (6.7% in 2001; 24.5.5% in 2013). Four out of five sedated patients died in hospitals, outside specialized palliative care units, or in nursing homes. Sedation was more likely among patients younger than 65 (odds ratio 2.24, 95% CI 1.6 to 3.2) and those dying in specialized palliative care (OR 2.2, 95% CI 1.3 to 3.8) or in hospitals (1.7, 95% CI 1.3 to 2.3). Forgoing life-prolonging treatment with the explicit intention to hasten or not to postpone death combined with intensified alleviation of symptoms was very strongly associated with continuous deep sedation (OR 6.8, 95% CI 4.7 to 9.8).ConclusionsIn Swiss clinical practice, continuously deeply sedated patients predominantly died outside specialized palliative care. The increasing trend over time appears to be related to changes in medical end-of-life practice rather than to patient’s clinical characteristics.

Background Chemotherapy near the end of life is an issue frequently discussed nowadays. The concern is that chemotherapy could cause more harm than good in a palliative situation; this is even truer as the patient nears death. The objective of our study is to evaluate the aggressiveness of patient care near the end of life by determining how many cancer patients receive chemotherapy during their final weeks. Methods In a retrospective analysis of patient charts, we investigated whether cancer patients had been treated with chemotherapy during the last four or two weeks of life. If they had, we looked at whether treatment was ongoing or newly initiated. Results Out of the 119 cancer patients who died in our hospital over two years, 14 (11.7%) received chemotherapy during the last four weeks of life, nine of whom (7.6%) in the last two weeks of life. Treatment had been ongoing in six (5%) and newly initiated for eight (6.7%) within four weeks of death. Corresponding figures for the last two weeks of life were seven patients (5.9%) who continued previously prescribed treatment and two (1.7%) who were started on chemotherapy. Patients given chemotherapy during the last four weeks of life were significantly younger than those who were not (p = 0.003). Conclusions Cancer patient care in our hospital is not considered overly aggressive as only 7.6% of these patients receive chemotherapy within the last two weeks of life. To determine how aggressive care near the end of life really is, however, we suggest evaluating newly started chemotherapy alongside ongoing treatment. As the line between the effects (beneficience) and side effects (nonmaleficience) of chemotherapy is often very narrow, doctors and patients have to work together to find the best way of treading this fine line.

Objectives: To determine the direction and magnitude of participation bias in end-of-life research.Methods: Within the framework of a European survey on medical end-of-life decisions, a non-response study was conducted among physicians in Denmark, the Netherlands, Sweden and Switzerland. People were asked about their attitudes and experiences in the area of medial end-of-life decision. The response rates ranged from 12.8% (Netherlands) to 39.4% (Switzerland). The responders (n = 5 403) and the non-responders (n = 866) were compared regarding socio-demographic characteristics, experiences with terminal patients and agreement with attitudes towards “end-of-life decisions”. The reasons for non-participation to the study were analyzed.Results: Non-response did not cause socio-demographic distortion, but non-responders had statistically significantly fewer terminal patients than responders. Agreement rates were statistically significantly higher among responders than among non-responders for euthanasia, non-treatment decision and life-preserving statements. Neutral answers were statistically significantly more frequent among non-responders than among responders for life-preserving and euthanasia statements. The most commonly mentioned reason for non-participation was “lack of time”.Conclusion: Non-participation does cause an overestimation of proponents of life-shortening, as well as of life-preserving end-of-life decisions. Non-responders more often have ambiguous attitudes towards end-of-life decisions than responders.