Descriptions by general practitioners and nurses of their collaboration in continuous sedation until death at home: in-depth qualitative interviews in three European countries.

CONTEXT: One palliative care approach that is increasingly being used at home for relieving intolerable suffering in terminally ill patients is continuous sedation until death. Its provision requires a multidisciplinary team approach, with adequate collaboration and communication. However, it is unknown how general practitioners (GPs) and home care nurses experience being involved in the use of sedation at home. OBJECTIVES: To present case-based GP and nurse descriptions of their collaboration, roles, and responsibilities during the process of continuous sedation until death at home in Belgium, The Netherlands, and the U.K. METHODS: We held in-depth qualitative interviews with 25 GPs and 26 nurses closely involved in the care of 29 adult cancer patients who received continuous sedation until death at home. RESULTS: We found that, in Belgium and The Netherlands, it was the GP who typically made the final decision to use sedation, whereas in the U.K., it was predominantly the nurse who both encouraged the GP to prescribe anticipatory medication and decided when to use the prescription. Nurses in the three countries reported that they commonly perform and monitor sedation in the absence of the GP, which they reported to experience as "emotionally burdensome." CONCLUSION: We found variety among the countries studied regarding the decision making and provision of continuous sedation until death at home. These differences, among others, may be the result of different organizational contexts in the three countries such as the use of anticipatory medication in the U.K.

Physicians' experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life.

OBJECTIVE: The use of continuous sedation until death for terminally ill cancer patients with unbearable and untreatable psychological and existential suffering remains controversial, and little in-depth insight exists into the circumstances in which physicians resort to it. METHODS: Our study was conducted in Belgium, the Netherlands, and the UK in hospitals, PCUs/hospices, and at home. We held interviews with 35 physicians most involved in the care of cancer patients who had psychological and existential suffering and had been continuously sedated until death. RESULTS: In the studied countries, three groups of patients were distinguished regarding the origin of their psychological and existential suffering. The first group had preexisting psychological problems before they became ill, the second developed psychological and existential suffering during their disease trajectory, and the third presented psychological symptoms that were characteristic of their disease. Before they resorted to the use of sedation, physicians reported that they had considered an array of pharmacological and psychological interventions that were ineffective or inappropriate to relieve this suffering. Necessary conditions for using sedation in this context were for most physicians the presence of refractory symptoms, a short life expectancy, and an explicit patient request for sedation. CONCLUSIONS: Physicians in our study used continuous sedation until death in the context of psychological and existential suffering after considering several pharmacological and psychological interventions. Further research and debate are needed on how and by whom this suffering at the end of life should be best treated, taking into account patients' individual preferences.

Factors that facilitate or constrain the use of continuous sedation at the end of life by physicians and nurses in Belgium: results from a focus group study.

Continuous sedation at the end of life (CS) is the practice whereby a physician uses sedatives to reduce or take away a patient's consciousness until death. Although the incidence of CS is rising, as of yet little research has been conducted on how the administration of CS is experienced by medical practitioners. Existing research shows that many differences exist between medical practitioners regarding how and how often they perform CS. We conducted a focus group study to find out which factors may facilitate or constrain the use of continuous sedation by physicians and nurses. The participants often had clear ideas on what could affect the likelihood that sedation would be used. The physicians and nurses in the focus groups testified that the use of continuous sedation was facilitated in cases where a patient has a very limited life expectancy, suffers intensely, makes an explicit request and has family members who can cope with the stress that accompanies sedation. However, this 'paradigm case' was considered to occur only rarely. Furthermore, deviations from the paradigm case were said to be sometimes due to physicians initiating the discussion on CS too late or not initiating it at all for fear of inducing the patient. Deviations from the paradigm case may also occur when sedation proves to be too difficult for family members who are said to sometimes pressure the medical practitioners to increase dosages and speed up the sedation.

Continuous deep sedation until death in nursing home residents with dementia: a case series.

OBJECTIVES: To describe the characteristics of continuous deep sedation until death and the prior decision-making process of nursing home residents dying with dementia and to evaluate this practice according to features reflecting sedation guideline recommendations. DESIGN: Epidemiological retrospective study completed using a case series analysis. SETTING: Flemish nursing homes in 2010. PARTICIPANTS: From a representative sample of 69 nursing homes, all residents who had dementia and had been continuously and deeply sedated until death over a period of 3 months were selected. MEASUREMENTS: Questionnaires to general practitioners (GPs), nurses, and relatives most involved in the care of the resident regarding the clinical characteristics of the resident, how sedation was decided upon and performed, quality of care, and dying. Advanced dementia was identified using the Global Deterioration and Cognitive Performance Scale. Whether this practice is in conformity with sedation guideline recommendations was also investigated. RESULTS: Eleven of 117 deceased residents with dementia (9.4%, 95% confidence interval (CI) = 4.0-14.8) and nine of 64 residents with advanced dementia (14.1%, 95% CI = 5.3-22.8) were sedated. Two of the 11 sedated residents were not considered to be terminal. Sedation duration ranged from 1 to 8 days. Two received artificial food and fluids during sedation. Five were partly or fully competent at admission and three in the last week. Four had expressed their wishes or had been involved in end-of-life decision-making; for eight residents, the GP discussed the resident's wishes with their relatives. Relatives reported that five of the residents had one or more symptoms while dying. Nurses of three residents reported that the dying process was a struggle. For two residents, sedation was effective. CONCLUSION: Continuous deep sedation until death for nursing home residents does not always guarantee a dying process free of symptoms and might be amenable to improvement.

Similarities and differences between continuous sedation until death and euthanasia - professional caregivers' attitudes and experiences: a focus group study.

BACKGROUND: According to various guidelines about continuous sedation until death, this practice can and should be clearly distinguished from euthanasia, which is legalized in Belgium. AIM: To explore professional caregivers' perceptions of the similarities and differences between continuous sedation until death and euthanasia. DESIGN: Qualitative data were gathered through focus groups. Questions pertained to participants' perceptions of continuous sedation. The focus groups were recorded and transcribed verbatim. Analyses were conducted by a multidisciplinary research team using constant comparison analyses. SETTING/PARTICIPANTS: We did four focus groups at Ghent University Hospital: two with physicians (n = 4 and n = 4) and two with nurses (n = 4 and n = 9). The participants could participate if they were ever involved in the use of continuous sedation until death. RESULTS: Although the differences and similarities between continuous sedation until death and euthanasia were not specifically addressed in the questions addressed in the focus groups, it emerged as an important theme in the participants' accounts. Many caregivers elaborated on the differences between both practices, particularly with regard to patients' preferences and requests, decision-making and physicians' intentions. However, some stated that the distinction between the two sometimes becomes blurred, especially when the sedating medication is increased disproportionally or when sedation is used for patients with a longer life expectancy. CONCLUSIONS: The differences and similarities between continuous sedation until death and euthanasia is an issue for several Flemish professional caregivers in their care for unbearably suffering patients at the end of life. Although guidelines strictly distinguish both practices, this may not always be the case in Flemish clinical practice.

The practice of continuous deep sedation until death in Flanders (Belgium), the Netherlands, and the U.K.: a comparative study.

CONTEXT: Existing empirical evidence shows that continuous deep sedation until death is given in about 15% of all deaths in Flanders, Belgium (BE), 8% in The Netherlands (NL), and 17% in the U.K. OBJECTIVES: This study compares characteristics of continuous deep sedation to explain these varying frequencies. METHODS: In Flanders, BE (2007) and NL (2005), death certificate studies were conducted. Questionnaires about continuous deep sedation and other decisions were sent to the certifying physicians of each death from a stratified sample (Flanders, BE: n=6927; NL: n=6860). In the U.K. in 2007-2008, questionnaires were sent to 8857 randomly sampled physicians asking them about the last death attended. RESULTS: The total number of deaths studied was 11,704 of which 1517 involved continuous deep sedation. In Dutch hospitals, continuous deep sedation was significantly less often provided (11%) compared with hospitals in Flanders, BE (20%) and the U.K. (17%). In U.K. home settings, continuous deep sedation was more common (19%) than in Flanders, BE (10%) or NL (8%). In NL in both settings, continuous deep sedation more often involved benzodiazepines and lasted less than 24 hours. Physicians in Flanders combined continuous deep sedation with a decision to provide physician-assisted death more often. Overall, men, younger patients, and patients with malignancies were more likely to receive continuous deep sedation, although this was not always significant within each country. CONCLUSION: Differences in the prevalence of continuous deep sedation appear to reflect complex legal, cultural, and organizational factors more than differences in patients' characteristics or clinical profiles. Further in-depth studies should explore whether these differences also reflect differences between countries in the quality of end-of-life care.

The experiences of relatives with the practice of palliative sedation: a systematic review.

CONTEXT: Guidelines about palliative sedation typically include recommendations to protect the well-being of relatives. OBJECTIVES: The aim of this study was to systematically review evidence on the experiences of relatives with the practice of palliative sedation. METHODS: PubMed, Embase, Web of Science, PsycINFO, and CINAHL were searched for empirical studies on relatives' experiences with palliative sedation. We investigated relatives' involvement in the decision-making and sedation processes, whether they received adequate information and support, and relatives' emotions. RESULTS: Of the 564 studies identified, 39 were included. The studies (30 quantitative, six qualitative, and three mixed methods) were conducted in 16 countries; three studies were based on relatives' reports, 26 on physicians' and nurses' proxy reports, seven on medical records, and three combined different sources. The 39 studies yielded a combined total of 8791 respondents or studied cases. Caregivers involved relatives in the decision making in 69%-100% of all cases (19 quantitative studies), and in 60%-100% of all cases, relatives were reported to have received adequate information (five quantitative studies). Only two quantitative studies reported on relatives' involvement in the provision of sedation. Despite the fact that the majority of relatives were reported to be comfortable with the use of palliative sedation (seven quantitative studies, four qualitative studies), several studies found that relatives were distressed by the use of sedation (five quantitative studies, five qualitative studies). No studies reported specifically about the support provided to the relatives. CONCLUSION: Relatives' experiences with palliative sedation are mainly studied from the perspective of proxies, mostly professional caregivers. The majority of relatives seems to be comfortable with the use of palliative sedation; however, they may experience substantial distress by the use of sedation.

General practitioners' report of continuous deep sedation until death for patients dying at home: a descriptive study from Belgium.

BACKGROUND: Palliative sedation is increasingly used at the end of life by general practitioners (GPs). OBJECTIVES: To study the characteristics of one type of palliative sedation, 'continuous deep sedation until death', for patients dying at home in Belgium. METHODS: SENTI-MELC, a large-scale mortality follow-back study of a representative surveillance network of Belgian GPs was conducted in 2005-2006. Out of 415 non-sudden home deaths registered, we identified all 31 cases of continuous deep sedation until death as reported by the GPs. GPs were interviewed face-to-face about patient characteristics, the decision-making process and characteristics of each case. RESULTS: 28 interviews were conducted (response rate 28/31). 19 patients had cancer. 19 patients suffered persistently and unbearably. Pain was the main indication for continuous deep sedation (15 cases). In 6 cases, the patient was competent but was not involved in decision making. Relatives and care providers were involved in 23 cases and 18 cases, respectively. Benzodiazepines were used in 21 cases. During sedation, 11/28 of patients awoke, mostly due to insufficient medication. In 13 cases, the GP partially or explicitly intended to hasten the patient's death. CONCLUSION: Continuous deep sedation until death, as practiced by Belgian GPs, is in most cases used for patients with unbearable suffering. Competent patients are not always involved in decision making while in most cases, the patient's family is.