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The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study.

ABSTRACT: 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.

SUBMITTER: Seymour J

PROVIDER: S-EPMC3056823 | biostudies-other | 2011

REPOSITORIES: biostudies-other

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The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study.

Seymour Jane J Rietjens Judith J Brown Jayne J van der Heide Agnes A Sterckx Sigrid S Deliens Luc L

BMC palliative care 20110304

<h4>Background</h4>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 variat ...[more]

PMID: 21375747

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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: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:BACKGROUND:Whilst any type of bereavement can be traumatic, bereavement through violent or sudden causes is associated with more severe negative health and wellbeing outcomes compared to other types of loss. Social support has been found to have a positive impact on wellbeing after traumatic events in general. However, this association appears to be less consistently demonstrated in studies that focus on bereavement, and the literature in this area has not yet been systematically reviewed. This study aimed to review the international literature to examine systematically whether there is an association between informal social support from family and friends after bereavement through sudden and/or violent causes and post-bereavement wellbeing. METHODS:We conducted a systematic search for quantitative studies that tested for an association between social support and any outcome related to wellbeing after a sudden and/or violent loss. Included studies were assessed for quality, and findings were reported using the approach of narrative synthesis. The review was pre-registered on Prospero (registration number CRD42018093704). RESULTS:We identified 16 papers that met inclusion criteria, 11 of which we assessed as being of good or fair quality and 5 as poor quality. Fifteen different wellbeing outcomes were measured across all studies. We found consistent evidence for an inverse association between social support and symptoms/presence of depression, predominantly consistent evidence for an inverse association between social support and symptoms/presence of post-traumatic stress disorder (PTSD), and conflicting evidence for an inverse association between social support and symptoms/presence of complicated grief. CONCLUSIONS:Our systematic review identified evidence to suggest that social support after sudden or violent bereavement is associated with a reduced severity of depressive and PTSD symptoms. Further longitudinal research is needed to explore potential causality in this relationship, widening the focus from common mental disorders to include other mental illnesses, wellbeing outcomes, and suicide-related outcomes after bereavement. There is also a need for consensus on the conceptualisation and measurement of social support. Our findings imply that interventions to improve access to and quality of social support may reduce the burden of mental illness after bereavement, and may therefore be worth investing in.

Project description:BACKGROUND:Organisational change in health systems is common. Success is often tied to the actors involved, including their awareness of the change, personal engagement and ownership of it. In many health systems, one of the most common changes we are witnessing is the redevelopment of long-standing hospitals. However, we know little about how hospital staff understand and experience such potentially far-reaching organisational change. The purpose of this study is to explore the understanding and experiences of hospital staff in the early stages of organisational change, using a hospital redevelopment in Sydney, Australia as a case study. METHODS:Semi-structured interviews were conducted with 46 clinical and non-clinical staff working at a large metropolitan hospital. Hospital staff were moving into a new building, not moving, or had moved into a different building two years prior. Questions asked staff about their level of awareness of the upcoming redevelopment and their experiences in the early stage of this change. Qualitative data were analysed using thematic analysis. RESULTS:Some staff expressed apprehension and held negative expectations regarding the organisational change. Concerns included inadequate staffing and potential for collaboration breakdown due to new layout of workspaces. These fears were compounded by current experiences of feeling uninformed about the change, as well as feelings of being fatigued and under-staffed in the constantly changing hospital environment. Nevertheless, balancing this, many staff reported positive expectations regarding the benefits to patients of the change and the potential for staff to adapt in the face of this change. CONCLUSIONS:The results of this study suggest that it is important to understand prospectively how actors involved make sense of organisational change, in order to potentially assuage concerns and alleviate negative expectations. Throughout the processes of organisational change, such as a hospital redevelopment, staff need to be engaged, adequately informed, trained, and to feel supported by management. The use of champions of varying professions and lead departments, may be useful to address concerns, adequately inform, and promote a sense of engagement among staff.

Project description:BackgroundLittle research has been conducted into the physical health implications of suicide bereavement compared to other causes of death. There is some evidence that suicide bereaved parents have higher morbidity, particularly in terms of chronic illness. This systematic review aims to examine the physical and psychosomatic morbidities of people bereaved by a family member's suicide and compare them with family members bereaved by other modes of death.MethodsMEDLINE, EMBASE, CINAHL, and PsycINFO were searched from 1985 to February 2016. The search was re-run in March 2017. Peer-reviewed English language articles comparing suicide-bereaved family members to non-suicide bereaved family members on measures of physical or psychosomatic health were eligible for inclusion. Cohort, cross-sectional, case-control and cohort-based register studies were eligible for inclusion. A modified version of the Newcastle Ottawa Scale was used for quality assessment. Results were synthesised using narrative synthesis.ResultsThe literature search located 24 studies which met the inclusion criteria. Seven studies found statistically significant associations between physical health and suicide bereavement. Five of the studies found that suicide-bereaved family members were more likely to experience pain, more physical illnesses and poorer general health. They were also at increased risk of cardiovascular disease, hypertension, diabetes and chronic obstructive pulmonary disease. In contrast, another study in Denmark found that those bereaved by suicide had a lower risk of a number of physical health disorders, including cancers, diabetes, cardiovascular and chronic lower respiratory tract disorders compared to those bereaved by other causes of death. Additionally, a further study conducted in the United States found that suicide-bereaved children visited a GP less frequently than non-suicide bereaved children.ConclusionsReview findings are relevant for clinicians working with people bereaved by suicide as they highlight that such clients are at increased risk of several adverse physical health outcomes. Future research should examine health risk behaviours of suicide-bereaved and non-suicide bereaved family members as they may confound the association between exposure and outcome.Trial registrationsThe review protocol has been registered on PROSPERO, registration number CRD42016030007 .

Dataset Information

The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study.

Publications

The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study.

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