Jayne Brown | De Montfort University (original) (raw)
Papers by Jayne Brown
De Montfort University, Jan 31, 2021
The Work.Live.Leicestershire (WiLL) programme is providing help for at least 541 economically ina... more The Work.Live.Leicestershire (WiLL) programme is providing help for at least 541 economically inactive or unemployed people in Leicestershire to move into job search, training, or employment. The programme seeks to reach people living in many of the smallest rural communities, and at time of writing was open to any resident without work for four weeks or more. 43% of participants who were unemployed on entry to the programme had been out of work for 12 months or more
Supplementary Information relating to the Hospital Sites (DOCX 12 kb)
Table S1. Promoting good outcomes in Lesbian, Gay and Bisexual (LGB) cancer care: a qualitative s... more Table S1. Promoting good outcomes in Lesbian, Gay and Bisexual (LGB) cancer care: a qualitative study of patientsâ experiences and interactions with health professionals in clinical oncology (DOCX 105 kb)
British Journal of Nursing, 2020
Background: This thematic review was part of a bigger literature review into the effects of short... more Background: This thematic review was part of a bigger literature review into the effects of short-term urinary catheters on patients who are discharged home from an acute hospital. Aims: This integrated review examined the risks associated with short-term urinary catheters. Methods: The MEDLINE, British Nursing Index and CINAHL databases were searched for studies published between 2013 and 2018 that researched the effects of short-term urinary catheters on patients. Findings: Twelve research studies were included, which showed the presence of short-term indwelling urinary catheters increased the risk of infection, length of hospital stay and mortality rates. Conclusion: Short-term urinary catheters should be strictly monitored and removed as soon as they are not required.
BMJ Supportive & Palliative Care, 2014
ABSTRACT In the UK, a key approach to improving end of life care has been the introduction of &am... more ABSTRACT In the UK, a key approach to improving end of life care has been the introduction of 'anticipatory' or 'just in case' prescriptions (APs). Nurses are often responsible for deciding when to use APs, but little is known about their experiences. To examine nurses' decisions, aims and concerns when using APs for patients cared for in the community. An ethnographic study in two UK regions, with community nursing teams and nursing homes. Observations and interviews were conducted with nurses involved in using APs. Observations (n=83) and interviews (n=61) with community nurses. Nurses identified five 'conditions' that needed to be established before they implemented an AP: a) irreversibility; b) no other methods of relief; c) patient unable to take oral medication; d) where the patient was able, they should consent; e) decision had to be independent of demands or request from patient's relatives. By using APs, nurses sought to: enable patients to be 'comfortable and settled' by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call out. Nurses sought to 'do it by the book', adhering strictly to local prescribing policies and guidelines. Some worried about: distinguishing between pain and agitation, balancing risks of under and over medication and the possibility of hastening death. Nurses have a leading role in the administration of APs. Nurses applied consideration and caution to the administration of APs with the expressed aim of relieving symptoms and distress.
Palliative medicine, 2015
In the United Kingdom, an approach to improving end-of-life care has been the introduction of ... more In the United Kingdom, an approach to improving end-of-life care has been the introduction of 'just in case' or 'anticipatory' medications. Nurses are often responsible for deciding when to use anticipatory medications, but little is known about their experiences. To examine nurses' decisions, aims and concerns when using anticipatory medications. An ethnographic study in two UK regions, using observations and interviews with nurses working in community and nursing home teams (n = 8). Observations (n = 83) and interviews (n = 61) with community nurses. Nurses identified four 'conditions' that needed to be established before they implemented anticipatory medications: (1) irreversibility; (2) inability to take oral medication; (3) where the patient was able, they should consent and (4) decision had to be independent of demands or requests from patient's relatives. By using anticipation medications, nurses sought to enable patients to be 'comfortable...
Supportive Care in Cancer, 2014
Purpose The purpose of the study was to explore relatives' descriptions and experiences of contin... more Purpose The purpose of the study was to explore relatives' descriptions and experiences of continuous sedation in end-oflife care for cancer patients and to identify and explain differences between respondents from the Netherlands, Belgium, and the UK. Methods In-depth interviews were held between January 2011 and May 2012 with 38 relatives of 32 cancer patients who received continuous sedation until death in hospitals, the community, and hospices/palliative care units. Results Relatives' descriptions of the practice referred to the outcome, to practical aspects, and to the goals of sedation. While most relatives believed sedation had contributed to a 'good death' for the patient, yet many expressed concerns. These related to anxieties about the patient's wellbeing, their own wellbeing, and questions about whether continuous sedation had shortened the patient's life (mostly UK), or whether an alternative approach would have been better. Such concerns seemed to have been prompted by relatives witnessing unexpected events such as the patient coming to awareness during sedation. In the Netherlands and in Belgium, several relatives reported that the start of the sedation allowed for a planned moment of 'saying goodbye'. In contrast, UK relatives discerned neither an explicit point at which sedation was started nor a specific moment of farewell. Conclusions Relatives believed that sedation contributed to the patient having a good death. Nevertheless, they also expressed concerns that may have been provoked by unexpected events for which they were unprepared. There seems to
British journal of nursing (Mark Allen Publishing)
Faecal incontinence and constipation are examples of functional bowel disorders that can lead to ... more Faecal incontinence and constipation are examples of functional bowel disorders that can lead to distressing psychological and physical symptoms which seriously impact upon quality of life. Rectal irrigation has been introduced as a treatment option for such patients. This article critically reviews and evaluates the current evidence on the effectiveness of rectal irrigation as a management option for functional bowel disorders. The review was conducted using BIOSIS, AHMED, CINAHL, MEDLINE, and Web of Knowledge. From 1051 articles identified through the literacy search, only nine were specifically concerned with the evaluation of rectal irrigation as a treatment option for functional bowel disorders. The results of the literature review do indicate that rectal irrigation could be a successful treatment option for some people, however, variations between studies and methodological limitations mean evidence of the effectiveness of rectal irrigation is lacking.
Journal of Pain and Symptom Management, 2013
Context. Numerous attempts have been made to describe and define sedation in end-of-life care ove... more Context. Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives. This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods. Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results. The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations, in combinations of a minimum of two or more of these aspects. Conclusion. There is a pressing need to resolve the conceptual confusion that currently exists in the literature to bring clarity to the dialogue and build a base of commonality on which to design research and enhance the practice of sedation in end-of-life care.
Journal of Pain and Symptom Management, 2014
Context. Sedation is administered to some palliative care patients at the end of their life. Nurs... more Context. Sedation is administered to some palliative care patients at the end of their life. Nurses play an important role in this practice. Objectives. To systematically review the evidence on nurses' attitudes and practice of end-of-life sedation. Methods. We searched eight electronic databases, four key palliative care journals, and reference lists for empirical studies published in English, between 1990 and 2012, on nurses and their attitudes toward and practice of sedation until a patient's death. A total of 10 studies met the inclusion criteria. Results. Data were generated from 7515 nurses in four main settings (specialized palliative care unit, home, nursing home, and acute hospital) from seven countries (
Journal of Pain and Symptom Management, 2014
Journal of Pain and Symptom Management, 2013
Context. Sedation at the end of life, regardless of the nomenclature, is an increasingly debated ... more Context. Sedation at the end of life, regardless of the nomenclature, is an increasingly debated practice at both clinical and bioethical levels. However, little is known about the characteristics and trends in scientific publications in this field of study. Objectives. This article presents a bibliometric analysis of the scientific publications on continuous sedation until death. Methods. Four electronic databases (MEDLINE, PubMed, Embase, and PsycINFO Ò) were searched for the indexed material published between 1945 and 2011. This search resulted in bibliographic data of 273 published outputs that were analyzed using bibliometric techniques. Results. Data revealed a trend of increased scientific publication from the early 1990s. Published outputs, diverse in type (comments/letters, articles, reviews, case reports, editorials), were widely distributed across 94 journals of varying scientific disciplines (medicine, nursing, palliative care, law, ethics). Most journals (72.3%) were classified under Medical and Health Sciences, with the Journal of Pain and Symptom Management identified as the major journal in the field covering 12.1% of the total publications. Empirical research articles, mostly of a quantitative design, originated from 17 countries. Although Japan and The Netherlands were found to be the leaders in research article productivity, it was the U.K. and the U.S. that ranked top in terms of the quantity of published outputs. Conclusion. This is the first bibliometric analysis on continuous sedation until death that can be used to inform future studies. Further research is needed to refine controversies on terminology and ethical acceptability of the practice, as well as conditions and modalities of its use.
BMC Medical Ethics, 2014
Background: Continuous sedation is increasingly used as a way to relieve symptoms at the end of l... more Background: Continuous 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. Methods: This 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. Results: The 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. Conclusion: Findings 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.
BMC Palliative Care, 2011
Background: A significant minority of dying people experience refractory symptoms or extreme dist... more 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 caregivers 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.
Palliative medicine, 2015
Extensive debate surrounds the practice of continuous sedation until death to control refractory ... more Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses. Qualitative case studies using interviews. Hospitals, the domestic home and hospices or palliative care units. In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient's request. Dutch respondents emphasized making an official medical decision informed by the patient's wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consc...
Context Numerous attempts have been made to describe and define sedation in end-of-life care over... more Context Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results The review shows that terminology has evolved f...
De Montfort University, Jan 31, 2021
The Work.Live.Leicestershire (WiLL) programme is providing help for at least 541 economically ina... more The Work.Live.Leicestershire (WiLL) programme is providing help for at least 541 economically inactive or unemployed people in Leicestershire to move into job search, training, or employment. The programme seeks to reach people living in many of the smallest rural communities, and at time of writing was open to any resident without work for four weeks or more. 43% of participants who were unemployed on entry to the programme had been out of work for 12 months or more
Supplementary Information relating to the Hospital Sites (DOCX 12 kb)
Table S1. Promoting good outcomes in Lesbian, Gay and Bisexual (LGB) cancer care: a qualitative s... more Table S1. Promoting good outcomes in Lesbian, Gay and Bisexual (LGB) cancer care: a qualitative study of patientsâ experiences and interactions with health professionals in clinical oncology (DOCX 105 kb)
British Journal of Nursing, 2020
Background: This thematic review was part of a bigger literature review into the effects of short... more Background: This thematic review was part of a bigger literature review into the effects of short-term urinary catheters on patients who are discharged home from an acute hospital. Aims: This integrated review examined the risks associated with short-term urinary catheters. Methods: The MEDLINE, British Nursing Index and CINAHL databases were searched for studies published between 2013 and 2018 that researched the effects of short-term urinary catheters on patients. Findings: Twelve research studies were included, which showed the presence of short-term indwelling urinary catheters increased the risk of infection, length of hospital stay and mortality rates. Conclusion: Short-term urinary catheters should be strictly monitored and removed as soon as they are not required.
BMJ Supportive & Palliative Care, 2014
ABSTRACT In the UK, a key approach to improving end of life care has been the introduction of &am... more ABSTRACT In the UK, a key approach to improving end of life care has been the introduction of 'anticipatory' or 'just in case' prescriptions (APs). Nurses are often responsible for deciding when to use APs, but little is known about their experiences. To examine nurses' decisions, aims and concerns when using APs for patients cared for in the community. An ethnographic study in two UK regions, with community nursing teams and nursing homes. Observations and interviews were conducted with nurses involved in using APs. Observations (n=83) and interviews (n=61) with community nurses. Nurses identified five 'conditions' that needed to be established before they implemented an AP: a) irreversibility; b) no other methods of relief; c) patient unable to take oral medication; d) where the patient was able, they should consent; e) decision had to be independent of demands or request from patient's relatives. By using APs, nurses sought to: enable patients to be 'comfortable and settled' by provision of gradual relief of symptoms at the lowest dose possible. They aimed to respond quickly to needs, seeking to avoid hospital admission or medical call out. Nurses sought to 'do it by the book', adhering strictly to local prescribing policies and guidelines. Some worried about: distinguishing between pain and agitation, balancing risks of under and over medication and the possibility of hastening death. Nurses have a leading role in the administration of APs. Nurses applied consideration and caution to the administration of APs with the expressed aim of relieving symptoms and distress.
Palliative medicine, 2015
In the United Kingdom, an approach to improving end-of-life care has been the introduction of ... more In the United Kingdom, an approach to improving end-of-life care has been the introduction of 'just in case' or 'anticipatory' medications. Nurses are often responsible for deciding when to use anticipatory medications, but little is known about their experiences. To examine nurses' decisions, aims and concerns when using anticipatory medications. An ethnographic study in two UK regions, using observations and interviews with nurses working in community and nursing home teams (n = 8). Observations (n = 83) and interviews (n = 61) with community nurses. Nurses identified four 'conditions' that needed to be established before they implemented anticipatory medications: (1) irreversibility; (2) inability to take oral medication; (3) where the patient was able, they should consent and (4) decision had to be independent of demands or requests from patient's relatives. By using anticipation medications, nurses sought to enable patients to be 'comfortable...
Supportive Care in Cancer, 2014
Purpose The purpose of the study was to explore relatives' descriptions and experiences of contin... more Purpose The purpose of the study was to explore relatives' descriptions and experiences of continuous sedation in end-oflife care for cancer patients and to identify and explain differences between respondents from the Netherlands, Belgium, and the UK. Methods In-depth interviews were held between January 2011 and May 2012 with 38 relatives of 32 cancer patients who received continuous sedation until death in hospitals, the community, and hospices/palliative care units. Results Relatives' descriptions of the practice referred to the outcome, to practical aspects, and to the goals of sedation. While most relatives believed sedation had contributed to a 'good death' for the patient, yet many expressed concerns. These related to anxieties about the patient's wellbeing, their own wellbeing, and questions about whether continuous sedation had shortened the patient's life (mostly UK), or whether an alternative approach would have been better. Such concerns seemed to have been prompted by relatives witnessing unexpected events such as the patient coming to awareness during sedation. In the Netherlands and in Belgium, several relatives reported that the start of the sedation allowed for a planned moment of 'saying goodbye'. In contrast, UK relatives discerned neither an explicit point at which sedation was started nor a specific moment of farewell. Conclusions Relatives believed that sedation contributed to the patient having a good death. Nevertheless, they also expressed concerns that may have been provoked by unexpected events for which they were unprepared. There seems to
British journal of nursing (Mark Allen Publishing)
Faecal incontinence and constipation are examples of functional bowel disorders that can lead to ... more Faecal incontinence and constipation are examples of functional bowel disorders that can lead to distressing psychological and physical symptoms which seriously impact upon quality of life. Rectal irrigation has been introduced as a treatment option for such patients. This article critically reviews and evaluates the current evidence on the effectiveness of rectal irrigation as a management option for functional bowel disorders. The review was conducted using BIOSIS, AHMED, CINAHL, MEDLINE, and Web of Knowledge. From 1051 articles identified through the literacy search, only nine were specifically concerned with the evaluation of rectal irrigation as a treatment option for functional bowel disorders. The results of the literature review do indicate that rectal irrigation could be a successful treatment option for some people, however, variations between studies and methodological limitations mean evidence of the effectiveness of rectal irrigation is lacking.
Journal of Pain and Symptom Management, 2013
Context. Numerous attempts have been made to describe and define sedation in end-of-life care ove... more Context. Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives. This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods. Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results. The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations, in combinations of a minimum of two or more of these aspects. Conclusion. There is a pressing need to resolve the conceptual confusion that currently exists in the literature to bring clarity to the dialogue and build a base of commonality on which to design research and enhance the practice of sedation in end-of-life care.
Journal of Pain and Symptom Management, 2014
Context. Sedation is administered to some palliative care patients at the end of their life. Nurs... more Context. Sedation is administered to some palliative care patients at the end of their life. Nurses play an important role in this practice. Objectives. To systematically review the evidence on nurses' attitudes and practice of end-of-life sedation. Methods. We searched eight electronic databases, four key palliative care journals, and reference lists for empirical studies published in English, between 1990 and 2012, on nurses and their attitudes toward and practice of sedation until a patient's death. A total of 10 studies met the inclusion criteria. Results. Data were generated from 7515 nurses in four main settings (specialized palliative care unit, home, nursing home, and acute hospital) from seven countries (
Journal of Pain and Symptom Management, 2014
Journal of Pain and Symptom Management, 2013
Context. Sedation at the end of life, regardless of the nomenclature, is an increasingly debated ... more Context. Sedation at the end of life, regardless of the nomenclature, is an increasingly debated practice at both clinical and bioethical levels. However, little is known about the characteristics and trends in scientific publications in this field of study. Objectives. This article presents a bibliometric analysis of the scientific publications on continuous sedation until death. Methods. Four electronic databases (MEDLINE, PubMed, Embase, and PsycINFO Ò) were searched for the indexed material published between 1945 and 2011. This search resulted in bibliographic data of 273 published outputs that were analyzed using bibliometric techniques. Results. Data revealed a trend of increased scientific publication from the early 1990s. Published outputs, diverse in type (comments/letters, articles, reviews, case reports, editorials), were widely distributed across 94 journals of varying scientific disciplines (medicine, nursing, palliative care, law, ethics). Most journals (72.3%) were classified under Medical and Health Sciences, with the Journal of Pain and Symptom Management identified as the major journal in the field covering 12.1% of the total publications. Empirical research articles, mostly of a quantitative design, originated from 17 countries. Although Japan and The Netherlands were found to be the leaders in research article productivity, it was the U.K. and the U.S. that ranked top in terms of the quantity of published outputs. Conclusion. This is the first bibliometric analysis on continuous sedation until death that can be used to inform future studies. Further research is needed to refine controversies on terminology and ethical acceptability of the practice, as well as conditions and modalities of its use.
BMC Medical Ethics, 2014
Background: Continuous sedation is increasingly used as a way to relieve symptoms at the end of l... more Background: Continuous 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. Methods: This 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. Results: The 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. Conclusion: Findings 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.
BMC Palliative Care, 2011
Background: A significant minority of dying people experience refractory symptoms or extreme dist... more 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 caregivers 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.
Palliative medicine, 2015
Extensive debate surrounds the practice of continuous sedation until death to control refractory ... more Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses. Qualitative case studies using interviews. Hospitals, the domestic home and hospices or palliative care units. In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient's request. Dutch respondents emphasized making an official medical decision informed by the patient's wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consc...
Context Numerous attempts have been made to describe and define sedation in end-of-life care over... more Context Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results The review shows that terminology has evolved f...