bluuebunny/crossref_metadata_2025_split huggingface dataset:
Specialist palliative care and sporadic Creutzfeldt – Jakob disease – a case series
Authors: Quibell Rachel , Gunn Hannah 
Published: March 2012

BackgroundCreutzfeldt – Jakob disease is a rare neurodegenerative disorder with an incidence of 1.4 million in UK1. There have been 80-100 cases per year in the UK since 1990. There are 4 forms of Creutzfeldt – Jakob disease: Sporadic, iatrogenic, genetic and variant. Sporadic Creutzfeldt – Jakob disease (sCJD) is commonest and the number of deaths from sCJD has increased. sCJD is relentlessly progressive with a median duration from symptoms to death of 4 months2. Specialist palliative care role has been recognised in the past3but there is little in the literature since.AimsTo understand in more depth the palliative care needs of patients with sCJD.MethodsCase notes review of patients diagnosed with sCJD.ResultsOver 14 month period 6 patients were referred to hospital specialist palliative care team that covers a regional neurosciences centre. Median age 63 Median duration of symptoms to death 3 months Median duration of diagnosis to death 28 days Analysis of notes revealed the following specific palliative care issues. Family/carer psychological support around diagnosis (often late), transition to palliative care, end of life care and bereavement support. Preferred place of care and death – 6 died in a hospice, 1 at home. Symptom management. In order of frequency: Myoclonus, pain, agitation/startle, visual problems, dystonia, emotional distress, respiratory distress, communication issues, swallow/feeding issues, nausea, constipation, respiratory secretions, seizures. Family support around postmortem and care of body after death.ConclusionSpecialist palliative care knowledge and services have an important role in the care of patients with sCJD.
Dying in hospital with Parkinson's disease: a retrospective audit
Authors: Samuel Maria , Ramsell Amy , Churm Deepta , Walker Richard 
Published: March 2012

BackgroundPatients with idiopathic Parkinson's disease (IPD) are most likely to die in hospital or nursing homes. Recognising and managing the end-of-life phase of IPD can be challenging. Complex symptoms such as swallowing difficulties, cognitive problems and hallucinations can be present. Patients may benefit from dopaminergic treatment until the very end, but drug delivery may be difficult. Guidelines have recently been developed to assist clinicians.AimTo document the prevalence and management of complex symptoms at the end-of-life, and the use of palliative care services and the Liverpool Care Pathway (LCP).MethodThis is a retrospective audit of all hospital deaths from 2008 to 2010 of patients with IPD known to the North Tyneside PD service. The last hospital admission during which the patient died was audited from medical records.ResultsMedical records were available for 33 out of the 35 patients who fulfilled the criteria of this audit. 58% were male. The average length of hospital stay was 12 days. 21% were documented to have hallucinations, 39% cognitive difficulties and 45% swallowing difficulties. Of those with swallowing difficulties, 13% had an existing percutaneous gastrostomy, 47% had a nasogastric tube and 40% had neither. 27% were started on a Rotigotine patch as dopaminergic therapy. 45% were started on the LCP prior to death. Of those on the LCP, 100% had their dopaminergic therapy stopped at the time of initiating the LCP. 15% were referred to the palliative care team.ConclusionThe recognition of the dying phase in patients with IPD remains difficult. It is recommended that dopaminergic therapy is continued for as long as possible, but swallowing difficulty at the end-of-life is common. The availability of Rotigotine patches may provide a solution to this. Finally, it may be appropriate to continue dopaminergic therapy in some despite initiating the LCP.
Evaluation of an age-appropriate palliative care service for teenagers and young adults
Authors: Elverson Jo , Cornish Liz , Wells Lucy 
Published: March 2012

Background2100 people between the age of 13 and 24 are diagnosed with cancer each year. While 75% survive following treatment, those that do not frequently have advanced and aggressive disease. It has been recognised that people in this age group have unique physical, psychosocial and developmental needs which are not always identified or addressed. These include the need to establish independence; explore relationships and intimacy; and maintain normality through education and peer support.AimsAt Douglas house, we aim to provide a flexible palliative service for teenagers and young adults with cancer based in a hospice for young adults. The service seeks to provide age-appropriate, individualised care, working closely with both adult and paediatric oncology and palliative care teams. We recognise the need to evaluate the impact of this service robustly since its beginning in 2010 to ensure it is meeting previously unmet needs appropriately. Evaluation has included case history reviews; interviews with patients and potential patients; and audit of types of input and intervention that have been utilised, and their outcomes.ConclusionThe young people's palliative care team has been able to learn from the individuals who have come under our care. Support has ranged from provision of time away from hospital during oncology treatment; facilitating difficult conversations with professionals and parents; providing symptom control; enabling normality and independence through group activities; and input at oncology multidisciplinary meetings. Our experience has taught us the need to think creatively about ways to support an age group who do not always engage with services in conventional ways. This has enabled us to continue to address the physical and psychosocial needs of both the patients and their families.
The NHS Scotland unified approach to paediatric resuscitation using the children and young peoples acute deterioration management (CYPADM) policy: development and implementation of quality measures
Authors: Murphy Dermot , Wilkie Rosalie , Davison Hillary , Spiller Juliet 
Published: March 2012

BackgroundThe Scottish Government has been instrumental in leading policy development for resuscitation planning. ‘Living and Dying Well’ a national action plan for palliative and end of life care made an integrated approach to DNACPR decision making an action point. This produced the first, national policy for DNACPR decision making in Europe. Simultaneously, work done in the paediatric sector highlighted the need for a positive and permissive approach to resuscitation planning for Children and Young Adults and a parallel government backed initiative produced the Children And Young Peoples Resuscitation Policy which launched in January 2011.AimsCYPADM aims to prevent unnecessary, unwarranted or unwanted attempts at resuscitation in children. Importantly it goes far beyond a simple cardiopulmonary resuscitation decision as cardiac arrest is a very rare terminal event in children and young adults. It clearly delineates what resuscitative measures are warranted as well as those that are not. It acknowledges that a full resuscitation attempt, including ventilation may be appropriate. CYPADM ensures that discussion of resuscitation of children and young people occurs with consultant medical and senior nursing staff engaging with parents and young people in a developmentally appropriate fashion. CYPADM is intended to be used in all care settings in both the statutory and voluntary sectors.MethodHealth Improvement Scotland undertook on-going evaluation of the DNACPR and CYPDM policies in consultation with a core multidisciplinary group including representatives from all Health Boards, the Scottish Ambulance Service, the Care Commission and NHS24. Measures have been developed which will establish the extent to which these policies impact on patient care with regard to inappropriate CPR attempts, expected death, and anticipatory care planning.ConclusionCYPADM assures an integrated, permissive approach to resuscitation planning and communication for children and young adults across Scotland. Electronic audit via the Scottish Paediatric Surveillance Unit is on-going.
Impact of a 2 h multi-approach-palliative care class on knowledge, attitudes and behaviour in 5th year medical students
Authors: Jaturapatporn Darin 
Published: March 2012

BackgroundMedical students have traditionally received no education in palliative care. However, in 2002, as part of a revised medical curriculum, Year 5 undergraduates at Ramathibodi Hospital, Mahidol University, Bangkok, Thailand participated in a 2 h class in palliative care.MethodsThirty-five medical students (100%) completed the pre and post self-evaluation form and written exam. Stuart Maxwell Analysis was performed to test statistic significance of the improvement.ResultsAfter the 2 h class, all students rate that the highest scale for their interest in palliative care, compared to 62.5% prior to the class. For knowledge, the score in written exam was increased by 50%. Attitudes toward palliative care tended to be improved by increasing the number of people who rated ‘highest’ for attitude domain from 5.71% to 74.29%. As for the confidence to practice in their real life, there was a shift from 92% who rated their confidence up to average to be 92% who had high and highest confidence after the class.ConclusionThis 2 h lecture has significantly raised 5th year medical students' understanding of Palliative Medicine. A short, but well-structured palliative care class can be effective in increasing students' knowledge, attitudes and confidence in palliative medicine.
High fidelity simulation training in end of life care – a vision for the future
Authors: Boulstridge Lisa , Reed Nikki , Joanne Harper , Jonathon Stewart , Seesarun Amar 
Published: March 2012

BackgroundHigh Fidelity Simulation Training originates in the aviation industry and has been shown to improve safety. Within healthcare, it is increasingly utilised to reproduce clinical situations and train multi-disciplinary professionals in technical skills and human factors. A fundamental role for clinicians of all disciplines, is the provision of end of life care. However limited work has been undertaken within the UK to develop the high fidelity simulation training model within Palliative and End of Life Care. Collaborative work between the Heart of England Hospital Palliative Care Team and the Hollier Simulation Centre has begun to explore the role of simulation training in end of life care.MethodsDuring 2010, a pilot of six 1-day courses were undertaken for hospital nurses. A simulated ward provided an accurate clinical environment within which participants could monitor, investigate and treat a sophisticated patient mannequin in real time. In addition role-play of trainers enabled realistic interaction with other healthcare professionals and relatives. Appropriate signs and symptoms were replicated including pain, breathlessness, vomiting, distress, respiratory secretions, agitation and bleeding. Participants were facilitated to develop skills in symptom control, advanced care planning, hand-overs and communication. Evaluation was undertaken via participant questionnaires completed before and after the course. Visual analogue scales enabled nurses to rate their confidence in performing aspects of end of life care.ResultsThe confidence of nurses increased in all areas of end of life care, demonstrated by increased mean visual analogue scores after the course. Free text responses indicated that nurses were apprehensive about undertaking simulation training but felt it was extremely effective.DiscussionFollowing the success of the pilot, end of life care simulation courses are continuing within the Heart of England Trust and work is in progress to extend the model of simulation training to hospice staff and primary care clinicians.
Lessons learnt while piloting the national e-learning end of life care (EoLC) programme in a district general hospital (DGH) setting
Authors: Anthony Julie , Collins Naomi , Littler Claire , Kelly Laura 
Published: March 2012

BackgroundThe End of Life Care (EoLC) for All e-learning package (e-ELCA) was developed by the Association of Palliative Medicine to support the End of Life Care Strategy (2008). It aims to provide accessible teaching to a wide range of staff with differing expertise and educational requirements. A 3 month pilot of e-ELCA was undertaken at East Surrey Hospital, a District General Hospital (DGH).AimThe main aims of this pilot: to train between thirty and forty ‘superusers’ whom, after completing two modules, could provide on-going support and training of all staff on EoLC via the use of the e-learning package and to evaluate staff knowledge and confidence in EoLC before and after the pilot via the use of a questionnaire.MethodsA specialist palliative care team nurse was seconded to support the training of ward staff. The e-learning training was consolidated on two acute wards and made universally available on the hospital intranet.ResultsSixty-four modules were completed by twenty nine staff during the pilot period. Undertaking the pilot highlighted difficulties: the e-ELCA site had to be accessed via an external site which proved difficult to use. Passwords, usernames and guidance on site navigation were required for all new users. Access to ward computers was limited and software was sometimes incompatible. Modules took longer to complete than expected, especially when English was a second language. Most importantly, to train ward nurses backfill of nursing posts was essential due to clinical pressures.Conclusione-ELCA can be undertaken in a DGH provided there is adequate IT support, accessing the material needs to be more user friendly and backfill of clinical posts is essential.
Creating a cognitive–behavioural therapy (CBT) skills cascade for palliative care practitioners
Authors: Mannix Kathryn , Baker Christine , Sage Nigel , Moorey Stirling 
Published: March 2012

IntroductionEmotional distress is common in palliative care and access to expert psychological help is limited. We have developed, evaluated and cascaded a brief training in CBT skills for palliative care practitioners that enables them to address patient distress and enhance coping. We will describe the cascade process and outcomes.BackgroundA palliative physician trained in CBT developed a hospice-based CBT practice and observed that CBT was acceptable and helpful to palliative care patients. A number of key interventions were identified to be included in a brief training package that was piloted in Newcastle and St Christopher's Hospice Sydenham. Training was effective in enabling staff to use intermediate CBT skills and in reducing patient distress. Expert CBT supervision was essential to preserve staff confidence and competence. Cascade plan: A Department of Health Innovations grant was obtained by Marie Curie Cancer Care and St Christopher's Hospice to cascade the CBT skills training over 3 years (2009 -12). Four of six training courses are now complete; each course has trained about 20 new ‘CBT First Aiders’ and two new trainers. Courses have been held across England (DH terms).OutcomesAfter training, staff are able to use a repertoire of CBT-based skills in their usual practice to improve emotional distress and enhance coping with physical symptoms, address changes in body image and physical ability and reduce dysfunctional coping strategies. Access to expert supervision ensures appropriate patients are helped by the CBT First Aiders while more serious problems are referred for expert help, ensuring best possible use of limited psychologist availability. Establishing a local psychological skills pyramid ensures rapid access to emotional help for patients, increases staff job satisfaction, enables psychology experts to see selected, triaged, appropriate patients while supporting many more patients by providing group supervision to CBT First Aiders.
The experience of patients with COPD who access specialist palliative care: a qualitative study
Authors: Hayle Catherine , Coventry Peter A , Gomm Stephanie , Caress Ann-Louise 
Published: March 2012

BackgroundPatients with end-stage chronic obstructive pulmonary disease (COPD) experience health-related quality of life comparable to, or worse than that of people with advanced non-small cell lung cancer. Access to specialist palliative care is poor for those with COPD, and comparisons with lung cancer patients demonstrate inequalities. National COPD guidelines state that patients ‘should have access to the full range of services offered by multidisciplinary palliative care teams’. Services are being developed to address this inequality, but it is not known whether current models of specialist palliative care are appropriate to the needs of COPD patients.AimTo understand the experience of patients with COPD who access specialist palliative care.MethodsEight patients accessing any service for one month (outpatient) or one week (inpatient) undertook semistructured interviews (mean duration 34 min). Recordings were transcribed verbatim and analysed using hermeneutic phenomenology.ResultsPerceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical symptoms, reduced social isolation and a broadened physical environment in which participants could function. Improvements in psychological wellbeing (including improved mood, confidence and self-worth) were also described. Patients were aware of their poor prognosis, but some were initially distressed at the prospect of palliative care referral, mainly due to prior associations between palliative care and death. Perceptions changed following engagement with services, with fear of discharge becoming problematic.ConclusionsThere is much within existing services that works well for people with COPD, but some features of care could be modified, such as patterns of service provision and discharge policy. In contrast with previous literature, participants were aware of their poor prognosis. However, work is needed to dispel negative perceptions of specialist palliative care among COPD patients, as they may form a barrier to access.
Palliative care for young people aged 16–24: assessing hospice staff training needs
Authors: Parr Alison , Kelly Lynn , Cail Andrea , Pearcy Helen , Allen Sue , Clarkson Patricia 
Published: March 2012

BackgroundDerian House Children's Hospice and St Catherine's Hospice (Adult service) successfully bid to the Department of Health to fund a joint project to improve access to hospice care for young people aged 16–25 years. As part of the project, we surveyed training needs of staff within the two organisations specifically with regard to caring for this age group and their families.ResultsFifty-two completed questionnaires were analysed; 34 (64%) from St Catherine's Hospice and 18 (34%) from Derian House Hospice. The survey included questions about role, work setting, frequency of involvement with young adults, assessment, communication and clinical management skills, previously identified training needs, access to relevant training and preferred learning methods. The majority of staff had some degree of confidence in all key areas of assessment, communication and management. However, staff generally lacked the confidence to train others, with the exception of management of pain and other symptoms and the use of syringe drivers. Significant training needs were identified. Overall trends were similar amongst adult and paediatric staff, although there were some significant differences. Training specific to the age group in question was highlighted as difficult to find and much needed locally.ConclusionLack of confidence of staff working within or allied to specialist units has implications for implementation of the national End Of Life Care Strategy. Provision of good clinical care for young adults with a diverse range of life-limiting conditions requires close collaboration between multi professional clinical teams working across geographical and organizational boundaries. A joint approach to workforce development involving NHS services, voluntary organisations and universities has been incorporated within the Central Lancashire Palliative Care Education Strategy with the aim of improving our ability to meet the needs of this specific group of patients.
Extent of palliative care need in the acute hospital setting: a prospective survey of two acute hospitals in the UK
Authors: Gardiner Clare , Ingleton Christine , Gott Merryn , Noble Bill , Bennett Mike , Seymour Jane 
Published: March 2012

BackgroundThe End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority, acknowledging that a proportion of patients dying in hospitals receive poor care. The identification of patients who may benefit from palliative care is well recognised as problematic and health professionals have reported difficulties with recognising when a palliative care approach may be appropriate.AimTo explore the extent of palliative care need in the acute hospital setting, and to explore agreement between different sources in the identification of patients with palliative care need.MethodA prospective survey of inpatients at two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to GSF criteria. Ward based medical and nursing staff were asked to identify patients with palliative care needs according to a standardised definition.ResultsData were collected from 514 consenting patients (response rate 37.8%), of these185 (36.2%) met one or more GSF criteria for palliative care need. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Agreement between medical staff and GSF (κ=0.22), and nursing staff and GSF (κ=0.25) was poor in relation to identifying patients with palliative care needs.ConclusionThe results reveal that according to the GSF prognostic guide, over a third of hospital inpatients meet the criteria for palliative care need. Consensus between medical staff, nursing staff and the GSF was poor regarding the identification of patients with palliative care needs. This has significant implications for patient care and draws into question the utility of the GSF in the hospital setting. Further research should seek to develop standardised criteria for identifying patients with palliative care needs in hospital, and to educate staff in implementing guidelines.