bluuebunny/crossref_metadata_2025_split huggingface dataset:
ANTICIPATORY CARE PLANNING: UNDERSTANDING THE IMPACT THAT TALKING ABOUT PLANNING FOR FUTURE CARE HAS ON RELATIVES/FRIENDS OF CARE HOME RESIDENTS
Authors: McGlinchey Tamsin , Saltmarsh Philip , Bancroft Rebecca , Mason Stephen , Corcoran Gerard , Ellershaw John 
Published: February 2014

BackgroundAdvance Care Planning (ACP) has become increasingly important in terms of its perceived role in improving care planning for people nearing End of Life (EOL). ACP can enable people to die in their place of choice, coordinate care, reduce unnecessary hospital admissions and burdensome interventions. Research is needed to inform our understanding of how ACP works in practice. Accordingly, a two phased study is currently engaged in the Care Home setting, which seeks to:Develop a consensual process for ACPAssess the impact that ACP discussions have on all participants; residents, relatives/friends and healthcare professionals.Findings from phase 1 of the study indicated that existing definitions of ACP are complex, and understanding was varied. A recommendation for this study was that the term Anticipatory Care Planning (AnCP) would be used to describe the planning process. Phase 2 of this project is now underway.Aim(s)To examine the lived experience of relative/friends, who have been engaged in conversations about AnCP, for residents living in care homes.Method(s)Interpretive phenomenology underpin the research methods employed; In-depth semi-structured interviews with residents (where possible) and relatives/friends of care home residents, are being undertaken using a longitudinal case study design:Initial interview after first AnCP discussionFollow up interview(s) at 3 monthly intervals throughout the study periodPost bereavement interview with relative/friends and healthcare professionals.ResultsQualitative data derived from the interviews will be discussed under the following emerging themes:Timing and content of discussionsEmotional impact of engaging in discussionsConfidence in care delivery in care home settingConclusion(s)Conclusions will inform the ongoing debate and understanding around the broader concept of Advance Care Planning, and also the impact that these types of discussions may have on residents and their relatives/friends.
PRINCIPLES OF SPIRITUAL CARE IN END-OF-LIFE CARE IN INDIA: A HISTORICAL-CULTURAL INVESTIGATION
Authors: Inbadas Hamilton , Seymour Jane , Narayanasamy Aru 
Published: February 2014

BackgroundUnderstanding the principles of spiritual care in end-of-life care pertaining to the Indian context is crucial for the development of an appropriate approach to spiritual care for Indian palliative care. The rich and diverse spiritual and cultural traditions around the care of the dying in the country provide useful resources for such a perception.AimsThis study seeks to examine the features of the care of the dying that were prevalent in the past in South India in order to understand the values and principles of spiritual care in the care of the dying in India.MethodsTaking a historical-cultural perspective, in-depth oral history interviews were conducted with thirty older adults belonging to different religions and none. Participants were recruited using purposive and snowballing sampling technique from Kanyakumari district, South India.ResultsSeveral religious and cultural care practices that were customary in the care of the dying and beliefs about good death that prevailed over a couple of decades 40 years ago emerged from the data. ‘Union with the divine’, ‘being at peace’ and ‘preserving dignity’ were the three core principles that were found to be at the heart of these practices and beliefs. All these practices and beliefs were found to have meanings and values attached to them that relate to these core principles.ConclusionsCare practices around the care of the dying and beliefs about good death are clearly characterised by spiritual beliefs. Perspectives on the present Indian scenario suggest that the above said principles play a vital role in shaping the current understanding of death and ideas of good death. Considerable contextual changes in the Indian society have caused the breakdown of traditional patterns of intergenerational dissemination of these practices and their meanings making these core principles hard to achieve.
THE PERSPECTIVES OF BEREAVED RELATIVES AND CLINCIANS ABOUT SEDATION IN END OF LIFE CARE: INSIGHTS FROM QUALITATIVE CASE STUDIES
Authors: Seymour Jane , Brown Jayne 
Published: February 2014

BackgroundThere are few studies which compare the experiences of clinical staff and bereaved relatives about sedation use in end of life care.AimTo report aspects of the UNBIASED study (UK, Netherlands and Belgium International Sedation Study), comparing how UK clinicians and bereaved relatives recall the use of sedation in end of life care.MethodsQualitative case study design using face to face interviews. Setting: Hospitals, the domestic home, and hospices. Participants: doctors, nurses and bereaved relatives involved in care of cancer patients who received continuous sedation until death. Senior clinical staff identified eligible decedents and then nominated the physicians and nurses most involved in their care; they then used their discretion to invite bereaved relatives to take part, at least three months after the death.Findings22 case studies were completed in the UK arm of the project. Seven cases were complete, in that they had perspectives from at least one nurse (n=10), one doctor (n=9) and one relative (n=7). This presentation focuses on these 7 cases. Relatives recalled that gaining control of some patients' symptoms was difficult to achieve and they regretted the time taken to gain this. Clinicians reported that the movement towards continuous sedation unfolded over time with no particular ‘moment’ of decision making. Careful use of medications to control difficult symptoms without making the patient completely unconsciousness was seen as the ideal by both relatives and clinicians. Some relatives and clinicians were concerned about hastening death; some relatives regretted that this was not possible in UK practice. Relatives expressed a range of understandings about how sedative medications worked. Understanding patients' wishes was important for both relatives and clinicians.ConclusionDetailed case studies can illuminate difficult areas of practice and provide pointers for practice development. Implications for communication and decision-making practice will be explored.
PALLIATIVE AND END OF LIFE CARE IN PRISONS IN ENGLAND AND WALES – APPROACHES TAKEN TO IMPROVE INEQUALITIES
Authors: Fletcher Andrew , Payne Sheila , Waterman David , Turner Mary 
Published: February 2014

BackgroundThe End of Life Care Strategy (2008) states that healthcare providers, prisons and coronial services should develop strategies that enhance delivery of palliative and end of life care. The prison environment and rules potentially creates inequalities in care. A paucity of research means that although palliative care is recognised as desirable, there is a lack of evidence about the nature of what is required and its feasibility in a prison context.Aims and MethodsThe aim of the study was to quantify palliative and end of life care need in adult prisons in England and Wales and identify services delivered and strategies to enhance care. A self-reported questionnaire was developed and consent for participation sought from 124 prisons.ResultsData obtained from 39 prisons (31.5% response rate) indicate that between 2010-2012, 113 prisoners died from natural causes; retrospective review concluded that 68 required palliative care input. Forty-five were considered for release to receive care in an alternative location; 20 of them were released. Factors preventing release included on-going risk, failure to identify patients in a timely manner or obtain the required medical report, and prisoners' wishes to remain in prison. Two-thirds of prisons had a palliative care policy; 28% had implemented the Gold Standards Framework and 36% Advance Care Planning. Ninety percent of prisons had access to palliative care nurse specialists and 77% palliative medicine consultants. Three broad approaches were identified; the individual prison approach, the cluster approach and the regional approach.ConclusionsThere is evidence of support from specialist palliative care services, implementation of palliative care principles and access to education for prison staff. The study has highlighted the challenges in developing palliative care services across the entire prisons service and the unique approaches adopted. Further research is underway to develop a model of integrated palliative and end of life care for dying prisoners.
CARING FOR FRAIL OR SERIOUSLY ILL OLDER PEOPLE DYING ON ACUTE HOSPITAL WARDS
Authors: Pollock Kristian , Caswell Glenys , Harwood Rowan , Porock Davina 
Published: February 2014

BackgroundHospital is considered an undesirable place to die. Concerns have been expressed about the quality of end of life care in this institutional setting, especially for patients dying with dementia.AimsTo explore end of life care for frail older people with and without dementia on acute hospital wards and whether there were differences between these two groups of patients.MethodsQualitative UK study based on 245 hours of observation, interviews with 38 ward staff and 13 bereaved relatives and review of 42 patient medical records.ResultsThe study findings highlight thedifficultyof recognising dying in frail older patients experiencing protracted decline prior to death. No differences were identified in the care and family experience of patients dying with or without dementia. It is difficult to apply the model of palliative care to older patients dying in acute hospital settings. Uncertainty of prognosis makes clinical decision making difficult, and exacerbates problems of communication with patients and families. Staff contact with dying patients and their relatives tended to be brief and task oriented. Across the wards, the variability in the families' experience of care was striking. Some families reported feeling unsupported throughout the vigil they kept for their dying relative. For others, however, hospital was, or came to be, thepreferredor most appropriate place, and could even provide apositiveexperience of death and dying.ConclusionAlthough hospital is widely regarded as the least preferred place of death, it will continue to be where most people die. It is important that the hospital is adequately resourced to provide sensitive, compassionate care to dying patients and their families. This will require substantial changes in the physical environment, organisation and delivery of care, and in staff understanding of their role in supporting and communicating with patients and their family carers.
PATTERNS OF DIAGNOSES AMONGST CHILDREN AND YOUNG ADULTS WITH LIFE-LIMITING CONDITIONS; IMPLICATIONS FOR SERVICE PROVISION
Authors: Fraser Lorna , Lidstone Victoria , Miller Michael , Aldridge Jan , Norman Paul , McKinney Patricia , Parslow Roger 
Published: February 2014

BackgroundThe numbers of children and young people with Life-Limiting Conditions (LLC) are rising due in part to increased survival. Therefore the teenagers and young adults with LLC require transition to appropriate adult services but the models of care for these services need to be aware of the diagnostic and demographic makeup of this population.AimsThis study aimed to describe the patterns of diagnoses by age group in children and young adults with Life-Limiting Conditions.MethodsIndividuals (0–40 years) with LLCs were identified within an English Hospital Episode Statistics dataset by applying a customized coding framework of the ICD-10 disease codes. Prevalence per 10 000 population was calculated by five year age groups for each diagnostic group, stratified by gender.ResultsThere is a U shaped prevalence with the highest overall prevalence in the under one age group (127 per 10000), decreasing until age 21–25 years (21 per 10000) before rising steeply to reach 55 per 10000 in the 36–40 year age group. Prevalence is higher in males than females until the age group 21–25 years where females predominate and the gap widens to 61.8 per 10000 female (95% CI 59.5–60.7) and 51.1 per 10000 male (95% CI 49.0–50.1) by age 36–40 years. Congenital Anomalies are the highest prevalence in children until age 16–20 years when oncology diagnoses become the most prevalent, rising steeply in early adulthood to 25 per 10000 by age 36–40 years. The second most prevalent diagnoses after age 25 years are neurology diagnoses in females and genitourinary diagnoses in males.ConclusionsPatients with oncology diagnoses usually have different needs from a palliative care service than patients with slowly degenerative diseases. The diagnostic and demographic breakdown of the population of teenagers and young adults with LLCs is important when planning future service provision.
VIEWS OF HOSPICE STAFF, PATIENTS AND THEIR SIGNIFICANT OTHERS ON VIDEO-RECORDING CONSULTATIONS FOR USE IN RESEARCH AND TEACHING
Authors: Parry Ruth , Faull Christina , Feathers Luke 
Published: February 2014

Research using video-recordings of actual consultations is increasingly providing better understandings of healthcare communication, and grounding new and effective interventions. Video-recordings provide details inaccessible through interviews and ethnographic observations. Initial work in a Health Association funded study involved consulting stakeholders and collating existing guidance to inform reasonable and ethical procedures for video-research in a hospice.AimsTo gather hospice patients', their significant others' and staffs' perspectives on acceptable and feasible approaches to collecting video-recordings of hospice consultations for research and teaching about expert communication skills. To collaboratively produce a protocol for making and using recordings.MethodsPatients and family members (n=14), experienced doctors and nurses (n=9), and educators (n=5) from a large hospice participated in audio-recorded qualitative interviews or focus groups, discussing: procedures for recruitment, consent processes, potential effects of video-recording on consultations, and use of video-clips within face-to-face teaching. Transcripts were thematically analysed, and findings triangulated with existing video-research guidance. A draft protocol for video-research in palliative care was refined through two rounds of consultation with a subsample of interviewees/focus group members.ResultsViews about the pros and cons of the research varied. Staff were more likely to emphasise restricting research to protect vulnerable people. Patients and family members tended to: emphasise the usefulness and need for the research; say patients and their significant others should be offered opportunities to participate; and note participation could be a positive element within the difficult experience of life coming to its end. Patients expressed very definite views about whether they personally would or would not be willing to be video-recorded. Across participants there were diverse views on whether recording would affect consultation behaviours.ConclusionsBesides underpinning the design of our study, findings add to the knowledge available to underpin sensitive and appropriate design of palliative care research and ethical oversight thereof.
LIVING WITH FRAILTY IN LATER LIFE: AN ETHNOGRAPHIC STUDY
Authors: Skilbeck Julie , Arthur Antony , Seymour Jane 
Published: February 2014

BackgroundThe term frail is frequently used to describe older people experiencing complex health problems. There is limited understanding of how older people experience frailty in the context of their daily lives. Understanding personal experiences of frailty will contribute to the holistic assessment and management of supportive care for older people in later life.AimTo explore how 'frail' older adults with complex problems who are living at home experience their daily life.Study DesignA prospective, longitudinal case study design using ethnographic data collection methods. Ten participants aged 75 and over, receiving care from a Community Matron (CM), were recruited. Participants were followed up at monthly intervals for 6 months or until death. In total, 49 interviews were conducted with older people; 49 CM visits were observed. Medical documents were reviewed for 10 participants. Data analysis involved cross case comparison and identification of common themes.FindingsThree themes illuminated the experience of living with frailty.Transitions in health and illnessdetails the types and patterns of transition and the subsequent impact on daily life.Dimensions of frailtyreports perceptions of frailty in later life; accounts of feeling frail relate to episodes of uncertainty.Working with health and social care servicesprovides insights into the inter-relationship between the older person's world of declining health and the episodic interactions with health professionals.DiscussionOlder people work hard to maintain daily routines as they experience changes in their health. Maintaining independence, dignity and continuity of personhood provide a counterpoint to being frail. Health professionals' work is framed by a policy of risk and clinical assessment. Assumptions underpinning the label of frailty can be at odds with the older person's experience. Commissioners of community services for frail older people need to consider these competing demands so that health professionals can engage more effectively in supportive care provision.
EXISTENTIAL CONCERNS ABOUT DEATH — A QUALITATIVE STUDY OF DYING PATIENTS IN A DANISH HOSPICE
Authors: Moestrup Lene 
Published: February 2014

BackgroundResearch suggests that addressing dying patients' existential concerns can help improve their quality of life. Common existential conditions, such as a search for meaning and considerations about faith, are probably intensified in a palliative setting and existential concerns about death are likewise intensified when patients face their impending death. Knowledge of modern, secular existential concerns about death is under-researched, and therefore, it is difficult to develop and implement specifically targeted support to dying patients.AimThe aim of this paper is to present the results from a qualitative field study illuminating the variety of dying patients´ existential concerns about their impending death.MethodData was generated through ethnographic fieldwork comprising 17 semi-structured interviews with dying patients and 38 days of participant observation at three Danish hospices.ResultsThe analyses of interview data revealed two categories of existential concerns. The first category “Thoughts and feelings about death” demonstrated how the patients: 1) realized the forthcoming death; 2) felt sorrow about leaving life; 3) were not anxious about death as a final state. The second category “Managing death” demonstrated how the patients: 1) avoided thinking about death; 2) reconstructed individual ideas about afterlife on the basis of faith and previous cultural meaning-making; 3) were planning practical aspects about death; 4) wished to focus on living. The patients' existential concerns of death in a modern, secular setting is not adequately described by neither Irvin Yalom's existential psychology nor Kübler-Ross' theory about death stages. The complex concerns might be explained in the light of research in everyday life based on Martin Heidegger's phenomenological thinking.ConclusionThe analyses indicated that the patients' concerns were complex, contradictory and not suited to be understood within a single theory. An ongoing reflection including different theoretical perspectives seems important when providing existential care and support to dying patients.
THE COMMUNITY CARE PATHWAYS AT THE END OF LIFE (CAPE) STUDY- EARLY FINDINGS
Authors: Boase Sue , Moran Emily , Barclay Stephen 
Published: February 2014

BackgroundCurrent NHS End of Life Care policy favours raising the proportion of deaths that occur at home. Currently this only occurs in 21.8% of the total. Although most people would like to die at home, research has shown that people's preferences are influenced by the progression of their illness, how much support is available and their social circumstances.AimsThe aim of the study is to clarify for whom home death is “good” and for whom it is not, and to ascertain whether the focus on place of death is helpful.MethodsUsing a mixed-method approach, data on 400 deceased patients, the perceptions of their GPs, community nurses and bereaved carers are brought together to generate an understanding of patterns of care need, and pathways of care provision at the end of life.ResultsInitial findings indicate the importance of trust and communication among the team. The health professionals felt that non-cancer patients are more difficult to care for than those with cancer, who have a clearer trajectory. Not all admissions to hospital at the end of life were seen as negative, and it may be the preferred place of care and death for some patients. Different agencies being on different electronic systems can cause communication difficulties and the different End of Life Care initiatives can be time-consuming and confusing.ConclusionsAlthough the findings are preliminary at present, it is hoped that this study will shed light on the investment of time and resources and the logistics of providing care at the end of life in the community whether the place of death is at home, in a care home, hospice or hospital. In turn this aims to address the question of whether the focus on place is the best measure of a “good” death.
TITRATION OF ABSTRAL IN THE HOSPICE SETTING: HOW DOES ABSTRAL DOSE RELATE TO BACKGROUND OPIOID REQUIREMENT?
Authors: Hurlow Adam , Rayment Clare , Ward Jason 
Published: February 2014

BackgroundSublingual fentanyl citrate orally disintegrating table (Abstral, ODT) is a rapid onset opioid developed for breakthrough cancer pain. Whilst ODT may be more efficacious than oral morphine for breakthrough pain the titration process of starting on the lowest dose may limit its use.AimsThe aims of this study were to identify how many patients were titrated to an effective ODT maintenance dose (stable for at least a week), to compare the maintenance dose to the background opioid dose at the time ODT was started and to identify reasons for unsuccessful titration.MethodsWe conducted a retrospective notes review of the first 30 hospice inpatients to be commenced on ODT in a 32 bed UK hospice. All opioid doses are expressed as the oral morphine equivalent calculated using hospice guidelines.ResultsAll patients had cancer and their median age was 64.5 (48–88) years. Seventeen patients achieved a maintenance dose and 12 continued ODT until death/data collection. In eight patients titration failed because the patient started to die. The maintenance ODT dose was 400 mcg or less in ten patients and 600–800 mcg in seven patients. The median background opioid doses were 205 mg and 500 mg respectively. The median titration period was 4 (0–20) days with only two patients taking more than a week. In three patients toxicity was the reason for stopping ODT.ConclusionsAbstral ODT was successfully titrated and effective in approximately half of all patients. Patients who required ODT doses of 600 mcg or more had a higher median background opioid dose suggesting a relationship between the two. Although titration to a maintenance dose took less than a week in almost all patients, onset of dying was the most common reason for titration failure. This suggests the titration process may be problematic for patients with short prognoses necessitating robust patient selection.