bluuebunny/crossref_metadata_2025_split huggingface dataset:
"DECIDING RIGHT" PROJECT, RIGHT CARE, RIGHT PLAN FOR RIGHT PATIENT
Authors: Than Tun , Adam Zahida , Wadhhwa Preeti , Ayubi Mohamed 
Published: February 2014

Aims and ObjectivesAlthough healthcare professionals perceive palliative care as a rewarding humane work, lack of training, leadership and resources are often cited as impediments to deliver high quality palliative care services. Recognising these hurdles and the scope for improvement in palliative care services across Leicester city, the commissioning group, the local hospice (LOROS) and Macmillan Cancer Support collaborated in launching an innovative “Deciding Right” project. This aims to promote identification of patients in their last year of life to provide a timely and robust multidisciplinary care based on the patient's choices.Description of the ProjectThe highlights of the project include developing a local enhanced service (LES), appointing and training of four locality GP mentors to promote awareness, sign-post and support various local health professionals and pathway mapping with multidisciplinary organizations to establish an integrated palliative care services. The service specification of the LES focused on developing and training a palliative care lead GP for each participating practice, timely identification of patients suitable for the care plan, effective discussion with the patients, families and the multidisciplinary team to develop and implement the plan in collaboration, systematic recording of the care plan on the novel, purpose-built and user friendly template on System One, and reflective learning for further development through after-death-audits (ADA).Results and reflectionsEach practice in the city now has a palliative care lead GP who has received training in identification of patients in their last year of life, communication and care planning. The project achieved improvements in the palliative care register across the city along with paving the pathway to provide an excellence in palliative care through effective communication across multidisciplinary team. It also highlight the need for more comprehensive guidelines for anticipatory prescribing and co-ordination of palliative care in out of hours settings.
AN INTERIM AUDIT USING THE NCDAH PROFORMA OF 30 CASE NOTES OF PATIENTS WHO HAVE DIED UTILISING THE LIVERPOOL CARE PATHWAY
Authors: Tymon Lorraine , Morris Tracey 
Published: February 2014

BackgroundThe Liverpool Care Pathway (LCP) is utilised as a model of best practice in the last hours/days of life, ensuring that patients receive high quality of care tailored to their individual needsThe National Care of the Dying Audit in Hospitals (NCDAH) serves to provide a snapshot of performance against the recommendations of care when patients receive treatment supported by the LCP.The Key Performance Indicators (KPI) are data driven metrics which illustrate performance of the participating NHS Trusts.The coded sections within the KPI are divided into red, amber and green and each NHS Trust receives an audit report, benchmarking its service.AimsThe primary aim of the project was to analyse current practice by undertaking an interim audit of 30 LCPs at Blackpool Teaching Hospitals NHS Foundation Trust in preparation for Round 4 of the NCDAH.The purpose was to identify any gaps that needed addressing in order to comply with the guidelines for high quality care and to address any issues by ongoing education and support.MethodWe analysed 30 sets of case notes of patients whose end–of-life care was supported by the LCP. Using the NCDAH proforma template we examined compliance against the recommendations.ResultsCompared with the results of last year's audit we found:4 hourly assessments carried out by staff had increased by 1%Discussions around spirituality had increased by 9%Medication prescribed on a prn basis had increased by 9%ConclusionCarrying out an interim audit provided an insight into current practice, highlighting deficits and offering valuable evidence to support ongoing education and training.
BASELINE AUDIT OF SUPPORTIVE CARE PROVISION FOR PATIENTS WHO DIED IN 2010 AND HAD LUNG TRANSPLANTS OR WERE ON THE WAITING LIST AT HAREFIELD HOSPITAL
Authors: Everitt Jane , Reed Anna , Jamal Humaira , Carby Martin , Sharon Fleming , Karen Collis , tracey Baker , Lauren Berry 
Published: February 2014

BackgroundThere is a lack of significant literature on provision of Supportive and Palliative care (SPC) for Lung transplant patients pre and post surgery.AimsA baseline audit of patients was undertaken to identify SPC access in the last year of life.Data collectionPatients who died in 2010 on the lung transplant waiting list or had lung or heart and lung transplants were audited retrospectively. Patient demographics and end of life data were collected.ResultsIn 2010 50% of post lung transplant patients who died were in Harefield Hospital. Most had SPC involvement but often late. One died in a hospice and none were known to die at home. Patients sometimes refused SPC referrals until very late. Communication to GPs rarely mentioned SPC. Most patients on the waiting list died in local hospitals.Limitations of Data collectionThere was a dearth of information for patients who died outside HH, and with one exception, there was no SPC data. This highlighted the difficulty of following the patient's journey through the healthcare system.The NHS spine data only includes date of death.Staff report anecdotally that conversations about advance care planning are often not documented.Future auditsContact GPs to collect data.OutcomesAction planning following this audit includes:1) Weekly meetings between Transplant and SPC to discuss patients who are cause for concern with audited outcomes.2) All patients on the waiting list will have access to Supportive care.3) Place of death has now been included on hospital systems.4) Improving access to SPC will increase support and services available to patients; families; carers and staff.Other specialist centres managing complex patients with organ failure face similar challenges and may consider a similar approach.
ENHANCHING VITALITY AT END OF LIFE
Authors: Haraldsdottir Erna , Hardie Amy , Kendall Marilyn 
Published: February 2014

BackgroundOne of the key elements of the palliative care philosophy is to enhance patients' vitality at end of life. This can be challenging to achieve given the progressive nature of disease and weakness of the body. Collaboration between a documentary film artist, patients, their families and staff, in a Scottish hospice addressed this challenge.MethodAdopting a participatory art based research method; the documentary film-maker worked with over 40 patients, family members and staff in the hospice to identify and expand on the reality and the life within a hospice. Following the patients' lead, further research into music and performance arts required collaboration with a music director and choreographer.ResultsFollowing an extended period of filming and editing, where the material was scrutinised and distilled into portraits and songs, twenty short films and a character led documentary feature films were developed into patient based narratives to be shared with the wider community.Making and participating in a film was energising, exciting and added new dimension to patients' life even though physically demanding.For patients it was also important to leave a legacy and a voice reflecting their strength and individuality as they use music and creativity to mirror their personal identity and the day- to -day life in the hospice.ConclusionMaking a film within a hospice has enabled patients to have a voice as individuals and challenge current perceptions of the dying patients as weak and vulnerable due to their declining body and progressive illness.Wide distribution of the film through television and cinema will encourage public debate across all medias, challenging assumptions about death, dying and the day-to-day life in a hospice.FundingCreative Scotland.
DNA CPR SCOTLAND POLICY: AN AUDIT OF THE SUCCESS OF IMPLEMENTATION IN NHS TAYSIDE
Authors: Douglas Claire , Harrison Michelle , Todd Ann-Marie , Munro Jemma , Essex Jane , Karuny Bheena 
Published: February 2014

IntroductionPeople who have advanced metastatic cancer or a poor performance status are unlikely to survive a cardiac arrest. In May 2010, the Scottish Government published the National DNACPR Integrated Adult policy with the aim of reducing unsuccessful attempts at resuscitation by improving decision making and communication about DNACPR decisions. Our study aimed to assess the success of policy implementation in NHS Tayside.MethodsA prospective casenote audit was performed for all patients admitted within a 30 day period to four clinical areas in Tayside; oncology, cardiology, MFE (medicine for the elderly) and Cornhill Macmillan Centre (hospice). Information obtained included diagnosis, past medical history, performance status, presence of a DNACPR form, patient outcome and whether completion and transfer of the form adhered to policy guidance.Results18% (5/27) of patients in Cornhill and 23% (7/30) of patients in oncology were admitted with a DNACPR form but none to cardiology (0/52) or MFE (0/24). During admission forms were present or completed in 92% (25/27) of patients from Cornhill, 78% (23/30) from oncology,19% (10/52) from cardiology and 29% (7/24) from MFE respectively. A significant proportion of patients without a form had metastatic cancer or poor performance status. Of patients discharged or transferred, the DNACPR form went with the patient in 100% of patients from Cornhill, 4% from oncology but none from cardiology or MFE. The form was either left in the notes, sent to the GP or the decision was reversed on discharge.ConclusionDNA CPR forms are being completed appropriately for many patients in the acute setting in Tayside, however many patients are not sent home with the forms despite the chances of surviving a cardiac arrest being negligible. Improvement in decision making and communication of DNACPR decisions with the patient, family and other professionals is required.
EVALUATING A SPECIALIST PALLIATIVE CARE INITIATIVE FOR NURSING AND RESIDENTIAL HOMES
Authors: Locker Sarah , Callin Sarah 
Published: February 2014

BackgroundThe End of Life Care report from the National Audit Office identified that 50% of care home residents who died in hospital, could have died in their care home. The support needed by care homes to enable residents to remain in their preferred place for death is complex; education alone does not change practice. We report interim data from a two year pilot of a hospice care home support team.AimsTo evaluate the effect of the care home support team on palliative care outcomes.MethodThe intervention. A team of three (two whole time equivalent) palliative care nurse specialists work with six nursing and four residential homes. They review systems of care, implement good-practice guidance and deliver an education programme.Ad hocclinical access and a regular clinical forum provide on-going support. Data collection (September 2012-end August 2013). Baseline retrospective data for the year prior to service introduction has been collected from the pilot care homes for the following outcomes: hospital admission, death in hospital, preferred place documentation, actual and preferred place of death. Measures repeated at one year.ResultsData from 10 care homes has been collected. Compared with baseline data, the following outcomes have improved for residents in pilot care homes: number of hospital admissions per annum (baseline; 146, review 70); deaths in hospital/all deaths per annum (baseline 15/81, 19%; review 18/134, 13%); preferred place of death documented (baseline 45/81, 56%; review 100/134, 75%); concordance with preference (baseline 89%; review 97%). Questionnaire feedback from residents, families and professionals involved with the service has also been positive.ConclusionsThis pilot data indicates that focused education and clinical support by a hospice care home support team is an effective way of improving quality of palliative care provision in nursing and residential homes.
HOW WELL DO THE GENERAL PUBLIC UNDERSTAND PALLIATIVE CARE? A MIXED METHODS STUDY
Authors: McIlfatrick Sonja , Hasson Felicity , Noble Helen , McLaughlin Dorry , Roulston Audrey , Rutherford Lesley , Johnston Gail , Kernohan George 
Published: February 2014

BackgroundInternational research suggests that the general public appear to be confused about what palliative care is and who provides it.1 2An understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of care.AimThe aim of this study was to establish the current levels of awareness and perceptions of palliative care among the general public in Northern Ireland.MethodsA mixed methods study comprising two phases was undertaken. A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. This was followed by semi structured telephone interviews (n=50).ResultsResponses indicated limited knowledge about palliative care. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A key aspect identified for promoting palliative care was the development of understanding and use of the term itself and targeted educational strategies.ConclusionsPublic awareness of the concept of palliative care and of service availability remains insufficient. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to improve the delivery of palliative and end-of-life care. (274)
HOW DOES PROVIDING AN ORAL HISTORY AT THE END OF LIFE INFLUENCE WELL-BEING OF THE INDIVIDUAL AND THE BEREAVED?
Authors: Winslow Michelle , Smith Sam 
Published: February 2014

BackgroundOral history captures and preserves patients' voices and involves them in the process of producing their own life histories. A Macmillan pilot project has created five oral history services in the north of England and Northern Ireland, additional to a service in Sheffield established in 2007. To understand the role of oral history in palliative care and bereavement, a further project has explored its significance amongst patients and bereaved family.AimTo assess the impact of recording an oral history with palliative care patients, and to understand how the recording is received in bereavement by family.MethodLiterature review and survey of life story work in palliative care settings; analysis of an existing archive of oral histories; semi-structured interviews with patients, family, bereavement group members and health care professionals.ResultsAnalysis of archival and qualitative interview material has highlighted that patients and family appreciate a voice recording. Patients value having time to reflect and express identity in an oral history interview, and recording personal life stories can engender a sense of autonomy at a time when they wield little power in their lives. Bereaved relatives find the recording comforting: “It's a memory for me. I've got something that's a little bit of her.” Both patients and family find oral history cathartic.ConclusionsWe have established that oral history enhances patient experience of palliative care by providing them with opportunities to talk about their past and present in a non-medical context. Bereaved family highlight that a voice recording is extremely important to them. This research provides vital information to support the future shape and direction of oral history services.
A LIVING COMMUNITY PRESENCE: EVALUATING A CARE OF THE DYING VOLUNTEER SERVICE
Authors: Nolan Kate , Mason Stephen , Gambles Maureen , Ellershaw John 
Published: February 2014

BackgroundThis abstract describes the evaluation of a Care of the Dying Volunteer (CODV) service provided to patients (and their relatives/friends) in the last hours or days of life, piloted in four clinical areas at a large teaching hospital in the North of England.AimTo gather information regarding participants' perceptions and experiences of a CODV service, in order to improve and refine the volunteer training programme and future service delivery.MethodsThree study specific questionnaires were designed to elicit feedback from three groups regarding their perceptions of the CODV service and training programme: bereaved relatives/friends, healthcare professionals (HCP) and the CODV themselves. In-depth interviews were untaken with bereaved relatives/friends, HCP and CODV's who had experienced/provided the CODV service. Interview data was triangulated around multiple perspectives in order to link ‘within-case analysis’ and ‘between-case’ analysis. All questionnaires were analysed descriptively.Results40 referrals resulted with 14 patients/families accepting the offer a CODV. 11 bereaved relatives/friends completed the questionnaire(s) and 10 consented to be interviewed. HCP's (n=60; response rate 27%) and CODV's also returned questionnaires for analysis (n=51; response rate 84%) and a sample were interviewed (n=14 & n=19) respectively.The CODVs' viewed the training as appropriate in preparing them for their role and regarded the support encounters experienced as ‘profound’. Relatives perceived the CODV service as appropriate, supportive and very positive. HCPs regarded the presence of the volunteer supportive for the patient and a valuable source of additional patient information; e.g. patient conditional changes. Interestingly, the theme of patients “dying alone” was a core motivating factor for CODV's and frequently regarded by HCPs as challenging and where the CODV impacted the most.ConclusionResults from this pilot study demonstrate that a CODV service can be implemented in the acute setting, providing meaningful support to patients and their families in this crucial phase of life.
COMPREHENDING THE INEXPLICABLE: QUALITATIVE ACCOUNTS OF BLACK CARIBBEAN AND WHITE BRITISH PEOPLE SEVERELY AFFECTED BY MULTIPLE SCLEROSIS
Authors: Koffman Jonathan , Goddard Cassie , Silber Eli , Burman Rachel , Shaw Pauline , Barnes Fiona , Speck Peter , Higginson Irene 
Published: February 2014

BackgroundMultiple sclerosis is now more common among minority ethnic groups in the UK but little known little is known about how they attribute meanings to their illness and to what extent they are culturally shaped; meanings may influence adjustment outcomes and attitudes to service use.AimTo explore the cognitive organisation and meanings of MS among black Caribbean (BC) and white British (WB) people severely affected by their illness and to understand how these may be culturally constructed.MethodSemi-structured qualitative interviews were conducted among Black Caribbean (BC) and White British (WB) people with MS (PwMS) with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach.Results15 BC and 15 WB PwMS were interviewed with mean ages of 46.6 and 56.9 years respectively. Attributions were complex, with most PwMS reporting multiple explanations. Uncertainty, represents the first theme surrounding the aetiology of MS where participants constantly rehearsed“why me?”question in relation to their illness, a number citing considerable frustration. The second main theme, ‘logical and scientific’, was voiced more often by WB PwMS and accounts for arrange of genetic/viral influences, stress, environmental and lifestyle factors. Third, the ‘supernatural’ illness attribution theme departs from a biomedical perspective and was reported more frequently among BC PwMS. This theme included the sub-categories of religious challenge and divine punishment, a view although exclusive to BC participants was sometimes in conflict with their notions of modernity.ConclusionWe identify causal attributions play important roles in determining emotional responses to MS. Taken together these findings suggest not only considerable cultural diversity in relation to MS causation but also diversity within groups. This highlights the need for health professionals to investigate such beliefs, particularly if supernatural causes are considered inherently uncontrollable. This has important implications for help-seeking and symptom-reporting behaviours.
EXPLORING THE PROCESS OF DECISION MAKING BETWEEN PATIENTS, FAMILIES AND COMMUNITY HEALTHCARE PROFESSIONALS AT END OF LIFE
Authors: Brogan Paula , Mcilfatrick Sonja , Hasson Felicity 
Published: February 2014

BackgroundMany studies in palliative care report that the majority of people would prefer to die at home.1It is recognised that the delivery of this care often requires the involvement of many different health care professionals and groups of family members. International evidence highlights the importance of patient choice and the notion of shared decision making in end of life care. However, little is known about how decisions are made.AimThe aim of this study is to identify what happens in the process of decision-making at end of life (EOL); to uncover participant experience of that process and contribute understanding the issues for patients, families and professionals.MethodsA multiple case study design using a qualitative approach was used. The sample included palliative patients living at home in the last 12 months of life (N=9); their family carers (N=10) and community based healthcare professionals, (general practitioners, nurses, social workers, allied healthcare practitioners) providing palliative care (N=56). Data collection included individual interviews (N=45), observation of interactions between participants, documentary review and focus groups (N=8) of professionals. Drawing on a shared decision making model, within and across case analysis was conducted using the Framework approach to identify themes and match patterns.ResultsDecisions are understood among the group via numerous one to one interactions. Subject to assumption and interpretation, decisions are often not explicitly stated and preferred place of death is avoided. Family are central to the process but marginalised from information. The process of death and the implications of dying at home are not explicitly discussed with patient or family.ConclusionsFindings suggest that shared decision making process at end of life is complex. Greater understanding of decision-making in this setting is required to improve care for patients approaching end of life.