"We don't want to sedate him" - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

BACKGROUND Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of 'sedative drugs' and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life. METHODS Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2. RESULTS Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient's suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term 'sedation' with inducing a state of unconsciousness, which should be avoided. CONCLUSION German healthcare professionals in general palliative care seem to negatively connote the term 'sedation'. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed

“Palliative syringe driver”? A mixed-methods study in different hospital departments on continuous infusions of sedatives and/or opioids in end-of-life care

Continuous infusions of sedatives and/or opioids (continuous infusions) are frequently used in end-of-life care. Available data indicate challenges in nonspecialist palliative care settings. We aimed to assess the use of continuous infusions during the last week of life in different hospital departments. METHODS: In a sequential mixed-methods design, a retrospective cohort study was followed by consecutive qualitative interviews in 5 German hospital departments. Medical records of 517 patients who died from January 2015 to December 2017 were used, and 25 interviews with physicians and nurses were conducted. Recorded sedatives were those recommended in guidelines for “palliative sedation”: benzodiazepines, levomepromazine, haloperidol (≥5 mg/d), and propofol. Exploratory statistical analysis (R 3.6.1.) and framework analysis of interviews (MAXQDA 2018.2) were performed. RESULTS: During the last week of life, 359 of 517 deceased patients (69%) received continuous infusions. Some interviewees reported that continuous infusions are a kind of standard procedure for “palliative” patients. According to our interviewees’ views, equating palliative care with continuous infusion therapy, insufficient experience regarding symptom control, and fewer care needs may contribute to this approach. In addition, interviewees reported that continuous infusions may be seen as an “overall-concept” for multiple symptoms. Medical record review demonstrated lack of a documented indication for 80 of 359 patients (22%). Some nurses experienced concerns or hesitations among physicians regarding the prescription of continuous infusions. CONCLUSIONS: Continuous infusions seem to be common practice. Lack of documented indications and concerns regarding the handling and perception of a “standard procedure” in these highly individual care situations emphasize the need for further exploration and support to ensure high quality of care

Adaptation of the Australian Palliative Care Phase concept to the German palliative care context: a mixed-methods approach using cognitive interviews and cross-sectional data

BACKGROUND Palliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate the associated care plan. In addition, it serves as a benchmark developed by the Australian Palliative Care Outcome Collaboration (PCOC) and is used nationwide for comparisons between services. In Germany, the concept is not used consistently due to various translations. Furthermore, there is no nationwide systematic approach to routinely assess clinical outcomes in palliative care. The study aims to develop a German version of the palliative care phase definitions by adapting them culturally, and to examine the inter-rater reliability of the adjusted definitions with healthcare professionals. METHODS Mixed-methods approach: Cognitive interview study using 'think aloud' and verbal probing techniques and a consecutive multi-center cross-sectional study with two clinicians independently assigning the phase definitions. Interviewees/participants were selected through convenience and purposive sampling in specialist palliative care inpatient units, advisory and community services and in three specialist palliative care units with doctors, nursing staff and allied health professionals. RESULTS Fifteen interviews were conducted. Identified difficulties were: Some translated terms were 1) not self-explanatory (e.g. 'family/carer' or 'care plan') and (2) too limited to the medical dimension neglecting the holistic approach of palliative care. (3) Problems of comprehension regarding the concept in general occurred, e.g. in differentiating between the 'unstable' and 'deteriorating' phase. Inter-rater reliability was moderate (kappa = 0.44; 95% CI = 0.39-0.52). The assignment of the phase 'deteriorating' has caused the most difficulties. CONCLUSION Overall, the adapted palliative care phases are suitable to use in the German specialist palliative care setting. However, the concept of the phases is not self-explanatory. To implement it nationwide for outcome measurement/benchmarking, it requires further education, on-the-job training and experience as well as the involvement of healthcare professionals in implementation process. For the use of international concepts in different healthcare systems, a deeper discussion and cultural adaptation is necessary besides the formal translation

Who uses self-exclusion to regulate problem gambling? A systematic literature review

Background and aims: Self-exclusion programs offer an intervention for individuals with problem gambling behavior. However, these programs are insufficiently used. This review describes sociodemographic features and gambling behavior of self-excluders as well as goals and motives for initiating self-exclusion from terrestrial and online gambling. In addition, use of further professional help and barriers to self-exclusion are examined. Methods: Based on systematic literature search and quality assessment, n = 16 original studies (13 quantitative, 2 qualitative, and 1 mixed method) published between 1997 and 2017 in English or German language were analyzed. Results are presented for online and terrestrial gambling separately. Results: Online self-excluders were on average 10 years younger than terrestrial self-excluders. Self-exclusion was mainly motivated by financial problems, followed by feelings of losing control and problems with significant others. Financial problems and significant others were less important for online than for terrestrial gamblers. Main barriers for self-exclusion were complicated enrollment processes, lack of complete exclusion from all venues, little support from venue staff, and lack of adequate information on self-exclusion programs. Both self-excluders from terrestrial and online gambling had negative attitudes toward the need of professional addiction care. Conclusion: To exploit the full potential of self-exclusion as a measure of gambler protection, its acceptance and its utilization need to be increased by target-group-specific information addressing financial issues and the role of significant others, simplifying the administrative processes, facilitating self-exclusion at an early stage of the gambling career, offering self-determined exclusion durations, and promoting additional use of professional addiction care

Sedatives and sedation at the end of life in the hospital: a multicenter retrospective cohort study

BACKGROUND: Data on sedation at the end of life (eol) in different medical disciplines are scarce and mostly based on subjective reports. We aimed to assess the use of sedatives with continuous effect in the last week of life and associated factors in different hospital departments, with the aid of objectifiable criteria. METHODS: We conducted a retrospective cohort study based on the medical records of patients who died in one of five clinical departments of German hospitals between January 2015 and December 2017 (hematology/oncology [two different departments], neurology, geriatrics, and gynecology). The use of sedatives that are recommended in guidelines for palliative sedation was analyzed, irrespective of indication and treatment intent, with the aid of published definitions of continuous effect and of at least moderately sedating doses. The analysis consisted of descriptive statistics and multivariate logistic regression analysis. RESULTS: 260/517 (50%) of the patients who died were given sedatives with continuous effect in the last week of life, 53/517 (10%) in at least moderately sedating doses. For 76/260 (29%) patients, no indication was noted. The term “sedation” was used in the medical records of 20/260 (8%) patients. The use of sedatives with continuous effect was significantly associated with the department in which the patient was treated (hematology/oncology II: OR 0.32, 95% CI [0.16: 0.63]; geriatrics: OR 0.23, 95% CI [0.10:0.50]; reference, hematology/oncology I). CONCLUSION: It was not possible to draw a clear distinction between the use of sedatives for symptom control, without sedating effect or intent to sedate, and intentional sedation to relieve suffering. The observed differences between hospital departments and deviations from recommended practice, e.g. lack of documentation of the indication, warrant further exploration. Moreover, context-specific supportive measures for the use of sedatives and sedation at the end of life should be developed