Jayne Brown

The role of education and training in achieving change in care homes: a literature review

Abstract Care homes play a vital role in the provision of support for the frailest members of our society, and given the demographic trends their role will continue for the foreseeable future. However, there remain enduring concerns about the quality of care such homes provide. Training and education for staff are often seen as the key to raising standards and as such are widely promoted. This paper presents a conceptual review and synthesis of the literature on the role of education and training in initiating and supporting change in care homes. A systematic method to the identification of sources was adopted, and a rigorous three-stage approach to analysis applied. The review identifies the barriers and facilitators to change and concludes that education is a necessary but not a sufficient condition for success. Rather it is argued that the role and status of care homes needs to be raised, and that a relationship-centred approach to care adopted, which acknowledges the importance of attending to the needs of all those who live in, work in, or visit care homes.

Developing narrative research in supportive and palliative care: the focus on illness narratives.

The phenomenon of the ‘illness narrative’ is well-documented, in the last 25 years, of increasing interest to researchers in health and social sciences. Personal stories about the experience of facing the end of life also have an established history of particular relevance for palliative care clinicians. In this article, we review and describe a range of narrative analysis approaches that may be of use in palliative care. In particular, we distinguish between qualitative analysis applied to narratives and narrative analysis as a method. We discuss the potential benefits and challenges in the use of narrative research methods as a means to deepen our understanding of patient, carer and health professionals’ experience, and to support improvements in end of life care policy and practice.

Using continuous sedation until death for cancer patients: A qualitative interview study of physicians’ and nurses’ practice in three European countries:

Background: 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. Methods: Qualitative case studies using interviews. Setting: Hospitals, the domestic home and hospices or palliative care units. Participants: In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients. Results: 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 consciousness, concerns about the potential hastening of death, whether they perceived continuous sedation until death as an ‘alternative’ to euthanasia and whether they sought to follow guidelines or frameworks for practice. Conclusion: This qualitative analysis suggests that there is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands.

From Sedation to Continuous Sedation Until Death: How Has the Conceptual Basis of Sedation in End-of-Life Care Changed Over Time?

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.

Administering anticipatory medications in end-of-life care: A qualitative study of nursing practice in the community and in nursing homes

Background: 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. Aim: To examine nurses’ decisions, aims and concerns when using anticipatory medications. Design: An ethnographic study in two UK regions, using observations and interviews with nurses working in community and nursing home teams (n = 8). Findings: 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 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, while adhering to local prescribing policies. Worries included distinguishing between pain and agitation, balancing risks of under- and over-medication and the possibility of hastening death. Conclusion: Nurses take a leading role in the administration of anticipatory medications. Nurses apply consideration and caution to the administration of anticipatory medications but some experience emotional burden. Education, training and experience played a role in the nurses’ confidence and should continue to be central to efforts to improving the quality of palliative care in the community and nursing homes.

'Show us you know us': Using the Senses Framework to support the professional development of undergraduate nursing students

As students, fledgling nurses need to feel they belong to a community of academics, peers and mentors who value their contribution to learning and knowledge. Creating a sense of community allows students to experience academic and practice integration at the beginning of their professional journey, recognising that positive learning experiences at an early stage of professional maturation can shape lifelong attitudes to learning and discovery. The Senses Framework has been used to develop supportive working in relation to older adults; it also has resonance for the development of undergraduate nurses. This article focuses on the student experience, exploring the potential for the Senses Framework to underpin a learning community, promoting collaboration and acknowledging the emotional, academic and professional work that is now essential for the preparation of registered nurse in the 21st Century.

Continuous sedation until death: the everyday moral reasoning of physicians, nurses and family caregivers in the UK, The Netherlands and Belgium

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.

The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries.

The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care (‘care providers’), differences between countries in care providers’ ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, maintaining consciousness where possible. The potential harms of sedation are perceived to be the potential hastening of social as well as biological death. In Belgium and the Netherlands, although there is concern to distinguish the practice from euthanasia, rapid inducement of deep unconsciousness is more acceptable to care providers. This is often perceived to be a proportionate response to unbearable suffering in a context where there is also greater pressure to hasten dying from relatives and others. This means that sedation is more likely to be organised like euthanasia, as the end ‘moment’ is reached, and family farewells are organised before the patient is made unconscious for ever. Medical and nursing practices are partly responses to factors outside the place of care, such as legislation and public sentiment. Dutch guidelines for sedation largely tally with the practices prevalent in the Netherlands and Belgium, in contrast with those produced by the more international European Association for Palliative Care whose authors describe an ethical framework closer to that reportedly used by UK care providers.

Continuous Sedation (CS) Until Death: Mapping the Literature by Bibliometric Analysis

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®) 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.

Building and sustaining work engagement – a participatory action intervention to increase work engagement in nursing staff

ABSTRACT This study evaluated whether a participatory action research intervention with nursing staff on acute care older people National Health Service wards in the United Kingdom was effective for increasing work engagement. Mediation analyses between job resources (social support, influence in decision-making), job demands, work-related needs (autonomy, competence, relatedness), and work engagement explored the presumed psychological mechanisms underlying the intervention. A non-randomized, matched control group, pretest, post-test design involved three intervention and five control wards. A significant decrease in relatedness, and a borderline significant decrease in competence, was observed in the intervention group compared to the control group, with no effect on work engagement (N = 45). Work-related needs mediated between resources and work engagement, supporting the job demands-resources model and self-determination theory as an underlying explanatory theory. Intervention implementation was difficult, highlighting the need for participant and organizational readiness for change, and strong management support. This is the first known study to apply participatory techniques to increase work engagement in nursing staff and explore the underlying explanatory psychological mechanisms, offering a novel means of taking work engagement research forward. Crucially, it highlights the challenges involved in intervention research and the importance of including evaluations of intervention implementation alongside statistical evaluations to avoid erroneous conclusions.