Continuous deep sedation at the end of life: a qualitative interview-study among health care providers on an evolving practice.

BACKGROUND: Continuous deep sedation (CDS) can be used for patients at the end of life who suffer intolerably from severe symptoms that cannot be relieved otherwise. In the Netherlands, the use of CDS is guided by an national guideline since 2005. The percentage of patients for whom CDS is used increased from 8% of all patients who died in 2005 to 18% in 2015. The aim of this study is to explore potential causes of the rise in the use of CDS in the Netherlands according to health care providers who have been participating in this practice. METHODS: Semi-structured interviews were conducted and thematically analysed. Participants were Dutch health care providers (HCPs), working at patients' homes, hospices, elderly care facilities and in hospitals and experienced in providing CDS, who were recruited via purposeful sampling. RESULTS: 41 Health care providers participated in an interview. For these HCPs the reason to start CDS is often a combination of symptoms resulting in a refractory state. HCPs indicated that symptoms of non-physical origin are increasingly important in the decision to start CDS. Most HCPs felt that suffering at the end of life is less tolerated by patients, their relatives, and sometimes by HCPs; they report more requests to relieve suffering by using CDS. Some HCPs in our study have experienced increasing pressure to perform CDS. Some HCPs stated that they more often used intermittent sedation, sometimes resulting in CDS. CONCLUSIONS: This study provides insight into how participating HCPs perceive that their practice of CDS changed over time. The combination of a broader interpretation of refractory suffering by HCPs and a decreased tolerance of suffering at the end of life by patients, their relatives and HCPs, may have led to a lower threshold to start CDS. TRIAL REGISTRATION: The Research Ethics Committee of University Medical Center Utrecht assessed that the study was exempt from ethical review according to Dutch law (Protocol number 19-435/C).

Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives.

BACKGROUND: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. OBJECTIVE: To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS. METHODS: Qualitative interviews were held with patients and relatives who had either personal experience with CDS as a relative or had contemplated CDS for themselves. RESULTS: The vast majority of respondents appreciated CDS as a palliative care option, and none of the respondents reported (moral) objections to CDS. The majority of respondents prioritized avoiding suffering at the end of life. The patients and families generally considered CDS a palliative care option for which they can choose. Likewise, according to our respondents, the decision to start CDS was made by them, instead of the physician. Negative experiences with CDS care were mostly related to loss of sense of agency, due to insufficient communication or information provision by healthcare professionals. Lack of continuity of care was also a source of distress. We observed a variety in the respondents' understanding of the distinction between CDS and other end-of-life care decisions, including euthanasia. Some perceived CDS as hastening death. CONCLUSION: The traditional view of CDS as a last resort option for a physician to relieve a patient's suffering at the end of life is not explicit among patients and relatives. Instead, our results show that they perceive CDS as a regular palliative care option. Along with this normalization of CDS, patients and relatives claim a substantial say in the decision-making and are mainly motivated by a wish to avoid suffering and exercise control at the end of life. These distinct views on CDS of patients, their relatives and healthcare providers should be reconciled in guidelines and protocols for CDS. PATIENT OR PUBLIC CONTRIBUTION: One of the authors in our team (G. H.) has experience with CDS as a relative and ensured that the patient/relative viewpoint was adequately reflected in the design and conduct of our study. In the preliminary phase of our study, G. H. adjusted the topic list so it was better adapted to the current practice of CDS. During the data analysis, G. H. read several interviews and took part in the open and critical discussion on central themes and core concepts as an important member of the author team, thereby guaranteeing the central position of the patient/relative perspective in our final research outcome.

Should we all die asleep? The problem of the normalization of palliative sedation.

Palliative sedation is a medical intervention to manage distress in dying patients, by reducing consciousness when symptom-directed therapies fail. Continuous deep sedation is ethically sensitive because it may shorten life and completely prevents communication. But sedation short of this is also common. There has been a steady increase in the use of sedation over recent decades. Sedation may have become a means to die while sleeping, rather than a method of last resort to alleviate suffering. Sedation may be requested or expected by patients, families or staff. The need for sedation may be being interpreted more loosely. The acceptance of a 'tolerable amount of discomfort' may have lost ground to a desire to get the final phase over with quickly. Sedation is not always a bad thing. Medical care is otherwise unable to completely control all distressing symptoms in every patient. Sedation may result from other necessary symptom control drugs. Dying when sedated can be seen by as 'peaceful'. We feel it is necessary, however, to highlight three caveats: the need to manage expectations, the cost in terms of loss of communication, and the grey area between continuous deep sedation and euthanasia. We conclude that there may be good grounds for sedation in palliative care, and in some cases, continuous deep sedation may be used as a last resort. But the criteria of necessary and proportionate drug treatment should remain. The normalisation of sedation into dying while sleeping should be resisted.

Symptom evolution in the dying.

OBJECTIVE: Provide insight in the prevalence of symptoms in patients who are in the last days of life. METHODS: A retrospective descriptive analysis of data on patients who died between 2012 and 2019 at the age of 18 or older in 1 of 20 Dutch healthcare facilities, including hospitals, inpatient hospices and long-term care facilities. We analysed data from 4 hourly registrations in the Care Programme for the Dying Person, to assess for how many patients symptom-related goals of care were not achieved. We looked at the first 4 hours episode after the start of the Care Programme and the last 4 hours episode prior to death. RESULTS: We analysed records of 2786 patients. In the first 4 hours episode, at least one symptom-related care goal was not achieved for 28.5%-42.8% of patients, depending on the care setting. In the last 4 hours episode, these percentages were 17.5%-26.9%. Care goals concerning pain and restlessness were most often not achieved: percentages varied from 7.3% to 20.9% for pain and from 9.3% to 21.9% for restlessness. CONCLUSIONS: Symptom control at the end of life is not optimal in a substantial minority of patients. Systematic assessment and attention as well as further research on symptom management are of the essence.

Intercountry and intracountry variations in opinions of palliative care specialist physicians in Germany, Italy, Japan and UK about continuous use of sedatives: an international cross-sectional survey.

OBJECTIVES: To explore intercountry and intracountry differences in physician opinions about continuous use of sedatives (CUS), and factors associated with their approval of CUS. SETTINGS: Secondary analysis of a questionnaire study. PARTICIPANTS: Palliative care physicians in Germany (N=273), Italy (N=198), Japan (N=334) and the UK (N=111). PRIMARY AND SECONDARY OUTCOME MEASURES: Physician approval for CUS in four situations, intention and treatment goal, how to use sedatives and beliefs about CUS. RESULTS: There were no significant intercountry or intracountry differences in the degree of agreement with statements that (1) CUS is not necessary as suffering can always be relieved with other measures (mostly disagree); (2) intention of CUS is to alleviate suffering and (3) shortening the dying process is not intended. However, there were significant intercountry differences in agreement with statements that (1) CUS is acceptable for patients with longer survival or psychoexistential suffering; (2) decrease in consciousness is intended and (3) choice of neuroleptics or opioids. Acceptability of CUS for patients with longer survival or psychoexistential suffering and whether decrease in consciousness is intended also showed wide intracountry differences. Also, the proportion of physicians who agreed versus disagreed with the statement that CUS may not alleviate suffering adequately even in unresponsive patients, was approximately equal. Regression analyses revealed that both physician-related and country-related factors were independently associated with physicians' approval of CUS. CONCLUSION: Variations in use of sedatives is due to both physician- and country-related factors, but palliative care physicians consistently agree on the value of sedatives to aid symptom control. Future research should focus on (1) whether sedatives should be used in patients with longer survival or with primarily psychoexistential suffering, (2) understanding physicians' intentions and treatment goals, (3) efficacy of different drugs and (4) understanding the actual experiences of patients receiving CUS.

Physicians' Opinion and Practice With the Continuous Use of Sedatives in the Last Days of Life.

CONTEXT: There are few international studies about the continuous use of sedatives (CUS) in the last days of life. OBJECTIVES: We aim to describe the experiences and opinions regarding CUS of physicians caring for terminally ill patients in seven countries. METHODS: Questionnaire study about practices and experiences with CUS in the last days of life among physicians caring for terminally ill patients in Belgium (n = 175), Germany (n = 546), Italy (n = 214), Japan (n = 513), the Netherlands (n = 829), United Kingdom (n = 114) and Singapore (n = 21). RESULTS: The overall response rate was 22%. Of the respondents, 88-99% reported that they had clinical experience of CUS in the last 12 months. More than 90% of respondents indicated that they mostly used midazolam for sedation. The use of sedatives to relieve suffering in the last days of life was considered acceptable in cases of physical suffering (87%-99%). This percentage was lower but still substantial in cases of psycho-existential suffering in the absence of physical symptoms (45%-88%). These percentages were lower when the prognosis was at least several weeks (22%-66% for physical suffering and 5%-42% for psycho-existential suffering). Of the respondents, 10% or less agreed with the statement that CUS is unnecessary because suffering can be alleviated with other measures. A substantial proportion (41%-95%) agreed with the statement that a competent patient with severe suffering has the right to demand the use of sedatives in the last days of life. CONCLUSION: Many respondents in our study considered CUS acceptable for the relief of physical and psycho-existential suffering in the last days of life. The acceptability was lower regarding CUS for psycho-existential suffering and regarding CUS for patients with a longer life expectancy.

Changing Practices in the Use of Continuous Sedation at the End of Life: A Systematic Review of the Literature.

CONTEXT: The use of continuous sedation until death (CSD) has been highly debated for many years. It is unknown how the use of CSD evolves over time. Reports suggest that there is an international increase in the use of CSD for terminally ill patients. OBJECTIVE: To gain insight in developments in the use of CSD in various countries and subpopulations. METHODS: We performed a search of the literature published between January 2000 and April 2020, in PubMed, Embase, CINAHL, PsycInfo, and the Cochrane Library by using the Preferred reporting items for systematic review and meta-analysis protocols guidelines. The search contained the following terms: continuous sedation, terminal sedation, palliative sedation, deep sedation, end-of-life sedation, sedation practice, and sedation until death. RESULTS: We found 23 articles on 16 nationwide studies and 38 articles on 37 subpopulation studies. In nationwide studies on frequencies of CSD in deceased persons varied from 3% in Denmark in 2001 to 18% in The Netherlands in 2015. Nationwide studies indicate an increase in the use of CSD. Frequencies of CSD in the different subpopulations varied too widely to observe time trends. Over the years, more studies reported on the use of CSD for nonphysical symptoms including fear, anxiety, and psycho-existential distress. In some studies, there was an increase in requests for sedation of patients from their families. CONCLUSIONS: The frequency of CSD seems to increase over time, possibly partly because of an extension of indications for sedation, from mainly physical symptoms to also nonphysical symptoms.

The Rising Frequency of Continuous Deep Sedation in the Netherlands, a Repeated Cross-Sectional Survey in 2005, 2010, and 2015.

OBJECTIVES: In the Netherlands, the use of continuous deep sedation at the end of life has sharply increased from 8.2% of all deaths in 2005 to 12.3% in 2010 to 18.3 % in 2015. We describe its clinical characteristics in 2015 and compare it with 2010 and 2005. DESIGN: Questionnaire study in random samples of death reported to a central death registry. SETTING AND PARTICIPANTS: A nationwide study in the Netherlands among physicians attending reported deaths. METHODS: Continuous deep sedation characteristics (patient characteristics, drugs, duration, estimated shortening of life, and palliative consultation) from the Netherlands in 2015 were compared with continuous deep sedation characteristics of 2010 and 2005. RESULTS: The response rate was 78% (n = 7277) in 2015, 74% (n = 6263) in 2010, and 78% (n = 6860) in 2005. The increased frequency of continuous deep sedation was notable in all patient subgroups, but mainly occurred among deaths attended by general practitioners, particularly in patients older than 80 years and patients with cancer. In 2015, continuous deep sedation was performed in 93% of the patients through administration of benzodiazepines. In 3% of the patients, the sedation lasted more than 1 week. Furthermore, 60% of the physicians reported that they had no intention to hasten death, 38% reported that they have taken hastening of death into account, and 2% reported their intention was to hasten death. For 1 in 5 patients, a palliative care expert was consulted prior to the start of sedation. These characteristics were comparable between 2015 and 2010. CONCLUSIONS AND IMPLICATIONS: The increase in continuous deep sedation mainly occurred in deaths attended by general practitioners, especially in older patients and patients with cancer. As there are no major shifts in demographic and epidemiologic patterns of dying, future studies should investigate possible explanations for the increase predominantly in societal developments, such as increased attention to sedation in education and society, a broader interpretation of the concept of refractoriness, and an increased need of patients and physicians to control the dying process.