bluuebunny/crossref_metadata_2025_split huggingface dataset:
Setting up an end of life group for a health and social care economy: start small, aim big!
Authors: Wenham Sarah , Whitfield Andrea , Au Gillian , Martin Michelle , Martin Michelle , Smith Kathryn , Salt Susan 
Published: March 2012

BackgroundThe End of Life (EoL) Strategy (2008) recommends a care pathway approach for commissioning and delivering integrated EoL health and social care (H&SC) services. The historical development and redesign of services within a large healthcare economy in the North West of England led to varying standards of EoL care provided by two primary care trusts, two local authorities, one acute hospital trust, one integrated Specialist Palliative Care Team and one out-of-hours service. With the proposed changes to commissioning and service provision, along with the current economic climate, the structure of services was again under redesign. This provided an opportunity to influence the strategic and operational direction of EoL services within the locality.AimTo set up an EoL Group for the H&SC economy.MethodIn order to facilitate partnership working, a small EoL operational group including key representatives from all the local stakeholder organisations was established. This group quickly demonstrated achievements in: • EoL care pathway design • Cross-organisational production of collaborative EoL guidance and documentation • Improving coordination and communication systems • Novel education and teaching initiatives This group was invited to put forward their vision, strategy and priorities for EoL care to the overarching H&SC Board for the locality.ResultsThe vision and strategic priorities for the new EoL Group will be presented in detail, along with the action plan to facilitate seamless EoL care across the H&SC economy. Facilitating factors, barriers and key points learnt during the process will also be discussed.ConclusionThe ability of a small number of dynamic individuals to influence and direct the strategic structure of EoL care for a whole locality is demonstrated. The driving force behind this exciting opportunity was the focus, enthusiasm and commitment of every member to work together collaboratively to enable high quality EoL care for all.
Can we work across the boundaries? Hospital and community services working together
Authors: Owens Maria , Smith Clare , Stevens Anna-Marie , Riley Julia 
Published: March 2012

BackgroundThere is an expressed preference by the general population to die at home, however in the UK 58% of people die in hospital. The Royal Marsden NHS Foundation Trust, with the co-operation of their Community Partners, has employed a case conference model to support patients achieving their preferred place of death (PPD). Patients with no further oncology treatment available are offered a case conference in their homes where a Clinical Nurse Specialist (CNS) from the hospital hands over to the community professionals in the presence of the patient. The service is called Hospital2Home (H2H). The belief is that by working together, with the patient at the centre, communication and co-ordination will improve, ensuring the patient is in the right place with the right people despite their changing condition.AimsThe aim of this audit is to evaluate the H2H service in terms of case conference length, attendees, issues discussed and outcomes (place of death and achievement of PPD). Methods: This is an audit of all conferences over a 4 year period. Data was collected during routine assessments by the H2H staff. Analysis included; demographics, attendees, issues discussed and place of death.ResultsOf 308 case conferences 270 of the patients have died. Case conferences were attended by: Patient 92%; Carer 97%; GP 78%; DN 89%; CNS 87% and Social worker 11% Discussions included: pain 93%; other symptom control 99%; functional issues 96%; psychological issues 93%; social issues 95%; spiritual religious issues 22%. The majority of case conferences (70%) lasted under 1 h Place of death: home 47%; hospice 36%; hospital 10%; nursing home 6% and other locations 1%. Overall, this equates to 83% congruence between actual and preferred place of death.DiscussionCollaborative working across organisational boundaries is possible and can improve PPD outcomes at the end of life.
Supporting hospice community staff with controlled drug management processes
Authors: Starnes Gina , Bunn Ray 
Published: March 2012

BackgroundSt Catherine's Hospice (StCH) Community team provides clinical advice and practical nursing support for palliative care patients living at home as part of shared care arrangements with the patient's primary care team. Following on from Accountable Officer work undertaken within the hospice Medicines Management Group, a significant gap in the support of community nursing staff from the hospice in the management of controlled drugs (CDs) was identified. Unlike in the inpatient setting, few guidelines incorporating regulations and Care Quality Commission outcomes could be found that explained processes for safely managing CDs in the home. The hospice catchment area spans two counties and Primary Care Trusts. The guidelines available within the community for the teams from the hospice to refer to regarding safe and supportive practice were inconsistent.AimProduce clear guidelines for hospice community teams on the safe handling of CDs in the patient's home. Document CD processes on appropriate locality specific paperwork, ideally witnessed by two hospice staff.ConclusionThe process of a second signature for a CD check is best practice and in the community setting this is achieved within a hierarchy of what is practical, safe for the practitioner and in the best interests of the patient, by either:▶Another member of the community team▶A care worker▶A relative/carer (if judged not to cause distress).A StCH drug incident form is now completed and processed if errors/discrepancies are found. As part of last offices and verification of death in the home all CDs are now checked and signed off and accounted for as the hospice team leave the family. Unused CDs are returned to the pharmacy by the patient's family. If there is any concern about leaving CDs in the home a risk assessment is completed.
How many doctors? Relational continuity in end of life care
Authors: Edmonds Claire , McFatter Fiona , Leiper Martin 
Published: March 2012

BackgroundContinuity of care is important to patients and is a key factor in providing good end of life care. Relational continuity describes the continuity of care provided by seeing the same doctor. This can facilitate difficult conversations regarding preferences for future care. A previous study of palliative care patients examined the number of doctors encountered. Since then there have been changes to medical training, limits on working hours and increased flexible working. This presents new challenges to continuity of care.AimsTo study relational continuity for patients who received end of life care in the hospice setting. To assess the number of doctors encountered in the last 6 months of life.MethodsA retrospective case note review was carried out for consecutive patients who died in a hospice over a 4 month period. A standardised data collection sheet was used and the number of doctors encountered noted. Encounters were identified by review of the hospital notes and documentation of a doctor's signature or an entry confirming which doctors the patient saw.ResultsSixty-five patients were identified and of these 41 case notes were available. In the last 6 months of life, the minimum number of doctors met was 2 and the maximum 57, mean 19.Of the total number of encounters one third were with a doctor they had not met before. Patients saw more foundation doctors and consultants than speciality trainees.DiscussionThese results are highly likely to underestimate the actual number of doctors patients saw. It does not include encounters in primary care or the continuity provided by other health professionals. Some patients encounter a large number of doctors in the months preceding death. With reduced working hours for doctors, attention has focused on handover for informational continuity and patient safety; less attention may have been given to relational continuity.
Caring or uncaring: evaluation of nurses' perception of the ‘comfort box’ in an acute care setting
Authors: Smith Paula , Joanne Leung , Davis Rachel 
Published: March 2012

BackgroundProviding high quality end of life care (EoLC) in acute care settings is often challenging. The importance of providing care and emotional support to visiting family members may often be overlooked in an effort to provide appropriate physical care and symptom management of the dying patient. At a local hospital Comfort Boxes have been used in some areas to provide patients and families with articles and material goods that may help to provide some relief during prolonged visiting periods. During an audit and evaluation of palliative care provision a review of the use of the comfort box was undertaken.AimsTo explore nurses perception of the use and potential use of a ‘Comfort Box’ in a variety of acute care settings at the hospital. A further aim was to explore the nurses' experiences of delivery of end-of-life care in an acute care setting.MethodsEight focus groups with thirty-six registered nurses, healthcare assistants and student nurses were recruited from two units currently using the ‘Comfort Box’ (N=19) and two units not using the ‘Comfort Box’ (N=17). Focus groups were transcribed and subjected to a thematic analysis.ResultsFour main themes were identified: Comfort and care, Supporting patients and families, Personal and organisational issues and Future improvements.ConclusionGenerally the ‘Comfort Box’ was seen to be beneficial to nursing staff and families where it is in use. However, there were tensions perceived in the way the comfort box could result in less interaction with patients and families. Personal and organisational resources were felt to have the potential to negatively impact on desired delivery of care. Suggestions for further education and training and simple infrastructure changes were made by the staff to facilitate good practice.
Palliative medicine in University Malaya Medical Centre: benchmarking against the minimum data set
Authors: Lam Chee Loong , Tan Seng Beng , Loh Ee Chin 
Published: March 2012

IntroductionUniversity Malaya Medical Centre is the main teaching hospital of University Malaya and admitted over 45000 inpatients in 2009. Palliative care services have gradually evolved since 2002. Services are currently provided by a team of medical specialists who manage an eight bedded inpatient ward, a hospital inpatient consultation team and weekly outpatient service.MethodThe palliative care database was reviewed retrospectively for the year 2010–2011 and basic demographic data, types of referrals, diagnostic categories and outcomes of care were collected and compared with the National Council for Palliative Care (NCPC) Minimum Data Set (MDS) report for the year 2009-2010. Only the hospital consultation and inpatient data is presently held within the database.ResultsA total of 856 (new, continuing and re-referred) inpatients were seen by the palliative care service. 44% were male (n=336) and 56% were female (n=428) and there were a considerably greater proportion of patients aged 65-74 compared with the NCPC data. Among new referrals, cancer diagnoses comprised 80% of referrals (n=591) compared with 19% (n=142) non-cancer diagnoses and 10 unrecorded diagnoses (1%). Proportionally more patients with breast cancer (17.6% vs 9%), motor neuron disease (9.8% vs 2%), chronic renal problems (21.8% vs 7%) and other heart/circulatory conditions (21.8% vs 12%) were seen compared with the NCPC MDS. More than half the patients seen by the palliative care team were discharged from hospital.DiscussionThe data demonstrates referral patterns and potential areas for further development. The need for more accurate evidence reflecting activity levels, outcomes and quality markers will be valuable in monitoring and planning future services as well as allocating resources in order to best meet the needs of the population. Further research into the local population is yet untapped and presents a huge opportunity for further work.
Transition to adulthood
Authors: McNamara Katrina 
Published: March 2012

BackgroundOver recent years there has been increasing evidence of the diverse approaches to moving young people with life-limiting conditions from children's services to adult services. ACT, the UK Association for Children's Palliative Care led a project which ran for 3 years across the UK which aimed to support local services as they implemented the ACT Transition Pathway for young people with life-threatening/life-limiting conditions. The transition pathway aims to provide a person-centred framework to support the planned move of young people from child-centred care through to adult focused services. UK policy documents have recognised the need for special focus on transition in palliative care services.AimsA 3 year programme led by ACT completed in 2011 highlighted the range of services across the UK and key themes relating to the work This presentation will provide an overview of the current situation across the whole UK in relation to the transition of young people with life-limiting illnesses. It identifies where improvements have been made against a baseline position reported in 2008, on a local, regional and national basis. The presentation will also provide a brief introduction to policy developments in all 4 UK countries relating to transition.ConclusionThere are a number of services across UK, many of whom have developed in response to a local need to provide services to young people moving from children's to adult services.
What end of life care do pancreatic cancer patients receive at a tertiary hepatobiliary unit?
Authors: De Vos Sarah , Badgery Karen , Noble Sophie , Metcalfe Matthew , Steward William , Cooke Caroline 
Published: March 2012

BackgroundFor patients who present with advanced pancreatic cancer, prognosis is poor irrespective of treatment. Good end of life care is therefore essential.AimTo examine specific elements of care given to patients at a tertiary hepatobiliary centre, to inform service improvement.MethodThe Hepatobiliary MDT identified 78 patients presenting with advanced pancreatic cancer who died between July and December 2010. Data was drawn from hospital and hospice notes using a proforma.ResultsMean survival time from diagnosis was 6.6 months. 59% had jaundice, 67% of whom underwent biliary drainage procedures. The majority required repeated attempts, prolonging admission and sometimes precluding a patient from dying elsewhere. 65% were referred to hospital palliative care teams, most commonly for symptom control; pain being predominant. There was evidence of limited advance care planning. Prognosis was discussed with 55%. No patients had an Advance Decision to Refuse Treatment or Advance Statement of wishes documented in their notes. 24% died in local acute hospitals. Of these, preferred place of death (PPD) was discussed with 32%, of whom 50% indicated it was home. PPD was only discussed following palliative care team involvement. DNA-CPR forms were completed for all patients except one, who had a sudden, unexpected death. 47% died on the Liverpool Care Pathway (LCP). 12% died in the hospice. PPD was discussed with all except one confused patient for whom it was considered with the family. In all hospice deaths, the PPD was the hospice. All had DNA-CPR forms completed, and 8 of 9 patients utilised the LCP.ConclusionAlthough biliary drainage may improve symptom control, these patients needed complicated procedures, often prolonging hospital admission at a time when they were deteriorating. Despite opportunities for discussion of end of life preferences during these admissions, there was evidence of little advance care planning for hospital inpatients.
Acorn project
Authors: Temenos Jan 
Published: March 2012

Background and AimsIn line with the End of Life Care Strategy (DOH 2007), the Acorn Project at Oakhaven Hospice promotes a healthier understanding of issues around death and dying, particularly among young people. The school activity weeks offer the community an opportunity to learn more about the hospice through the eyes of children and allow patients and carers a space to talk about their experiences. Implementation Macmillan Cancer Support championed the appointment of a Schools Project Coordinator in April 2011, with the expectation that part of the role would be to roll the project out to other hospices. Each school learns about Macmillan Cancer Support and the Dying Matters coalition. They consider how and what they might do to support Dying Matters week, within their school and community. They also commit to creating a display which starts at the hospice then travels to the local hospital, a nearby community location and finally back to the school. The project then developed beyond the 4 week model; Health and Social work (PHSE) teachers are supported to focus on death education to meet syllabus requirements for GCSE, AS, A level and Btec students. Lessons initiated with ‘A’ level PHSE students, led to the development of the project, ‘The hospice as a service provider’. Besides college based lessons, students visit the hospice to meet clients and receive teaching from members of the multidisciplinary team. Patients report how much participating gives them a sense of worth and purpose, so often lost for those at the end of life. Building on this work a placement scheme was developed which involves a 2 year placement where students gain experientially from working as part of the Acorn team. The Acorn Project is changing attitudes within our community.
Raising awareness of research in palliative care – the roadshow!
Authors: Woodward Amanda , Nelson Annmarie , Byrne Anthony , Moore Barbara , Evans Mim , Shankland Sara 
Published: March 2012

AimTo ensure all specialist palliative care teams are aware of research development and research recruitment opportunities and thus maximise access to palliative care research for all patients in Wales.MethodThe Marie Curie Palliative Care Research Centre, Cardiff, collaborated with the Wales Cancer Research Network and NISCHR Cancer Research Group to plan a series of roadshows with palliative care teams across Wales. Initially, a Pilot roadshow was launched at the All Wales Palliative Care Conference, Gregynog in October 2010. This tested, by peer review, the format and content of the series of roadshows planned for 2011. The pilot received constructive feedback and changes were made to ensure the roadshow content was clear and relevant to its intended audience. The roadshows took place at locations selected by the local clinical lead, at lunchtimes, and lasted 1–2 h. The panel of speakers took the audience through a research project from idea to completion, using a real life example. The audience completed feedback forms.OutcomeFeedback was overwhelmingly positive. Several clinicians have contacted the group with their research ideas. Staff have been introduced to their NISCHR Regional Research Nurse Manager. Contact details have been collected and a palliative care database established.
Audit of minority ethnic group referrals to the specialist pyschological service for oncology and palliative care in East Berkshire
Authors: Ryninks Kirsty , Smith Paula , Bebb Katie 
Published: March 2012

BackgroundStudies have repeatedly found that Minority Ethnic Groups (MEGs) are underrepresented among users of Specialist Palliative Care Services (SPCS). However, there is little knowledge about referrals to specialist psychological services in oncology and palliative care. From 2009 to 2010 referrals of MEGs to the Specialist Psychological Service for Oncology and Palliative Care (SPSOPC) within the Specialist Palliative Care Team (SPCT) in East Berkshire accounted for only 6% of total referrals. The MEG population in this area is between 9–40% so this would appear to reflect an under-referral of MEGs to SPSOPC during this time.AimsTo audit all SPSOPC referrals to identify the composition (demographic, diagnostic, and reason for referral) of MEG patients referred to the team. To explore which healthcare professionals from primary care, acute care and the SPCT had referred patients into the service from April 2010 to March 2011.ResultsOverall referrals of MEGs to SPSOPC increased slightly to 8% during 2010-2011, which is still less than expected for this area. The reason for referral to SPSOPC was similar for MEGs and other population groups. This would suggest that there remains an under referral of MEG patients to SPSOPC in this area. While 50% of referrals were made by SPCT, only 4% of referrals to SPOPC were made by a GP or a District Nurse.ConclusionThe study highlights the need to increase awareness of the availability and remit of Specialist Psychological Services for MEGs in referring healthcare professionals and potential clients. Further research with GPs and District Nurses is required to explore the reasons behind low referrals of MEGs to SPSOPC. Greater understanding of specialist services could help general service providers tailor their care more appropriately to the community that they serve.
Documentation after the death of a patient on a hospice inpatient unit (IPU)
Authors: Gregory Amanda 
Published: March 2012

BackgroundFollowing a cluster of complaints relating to care after death, our incident reporting process identified that poor documentation may have led to miscommunication and that the processes for documenting essential information after the death of a patient were not always being followed.AimThe aim of this audit was to establish whether there was a true problem with documentation, to identify possible causes and methods of improvement.MethodsAll deaths (58) on the IPU between 1 May 2010 and 31 July 2010 were identified from the electronic notes. The auditor reviewed each individual case record focusing on the ‘windows’ which should be completed when a patient dies. These include documentation of: the medical certificate of cause of death (which generates a notification letter for the GP), completion of cremation papers, verification of death (VOED) and details of the bereavement meeting.DiscussionAlthough documentation was generally good, there were significant omissions. For all deaths no indication was given as to whether the notification letter should be sent to other health professionals. Evidence of completion of cremation papers was only available for one patient. VOED was documented in 93% of cases although the documentation of who was present at the time of death was not always specific. There was evidence of a bereavement meeting after 39 deaths.ActionsRecommendations were put into place to improve documentation including teaching to clinical staff and updated guidance on care after death. A re-audit was completed in 2011 (1/1/11–31/3/11, 59 deaths) with an improvement in most areas. There was over 90% evidence of completion of cremation papers. An indication of whether the notification letter should be sent to others was present in almost half of cases. There was evidence of a bereavement meeting after 52 deaths. There is an on-going programme of audit in this area.