bluuebunny/crossref_metadata_2025_split huggingface dataset:
Madrid ELA and Palliative Care Regional Protocol
Authors: Merino Teresa Garcïa-Baquero , Salas Teresa , Diego Ruiz-Lpez , Belen Esteban Jesus Martinez Cruz Mï 
Published: March 2012

BackgroundMND sufferers benefit from specialist PC input at various points during its trajectory with varying degrees of involvement the authors wanted to optimise and homogenise technical and human resources to integrate them in a single model to offer the right continuing care to this group of patients and their families. Referral criteria were mere recommendations developed by the different MND Units' Coordinators, not formalised;. independent criteria could be enough to support referral.AimTo create a common protocol of care for all MND Units and PC teams. To encourage the early detection of palliative care needs for this patient's group. To know the best point at which to include these patients in regional PC program.MethodsSeveral meetings were held incorporating members from HC Teams, Hospital Teams, public and private inpatient units, Primary Care, Neurologists, monographic MND units and PAL24. Together they have designed and started to implement: Organisative Model. Assistential Model. Pathway definition 24 h specialist access and care Taylor made electronic systems.ResultsTrigger or inflexion points to inform the decision making process as to when to refer to PC have been established and incorporated in the Madrid Adult Referral Form. An urgent need to create inpatient facilities -with technical, material and human resources-to cater for the needs of this group of patient was identified: Regular inpatient care and respite care.Conclusion1. Madrid has achieved its first ever MND PC joint project 2. Close collaboration and coordination between all professional groups involved ensued and helped agree the following:▶Referral criteria.▶MND training for PC professionals.▶Need for PC professionals to gain experience in MND Units.▶To offer workshops run by MND experts to PC professionals.
What's my role?
Authors: McNamara Katrina 
Published: March 2012

BackgroundIn 2010, the Department of Health in England made £30m funds available to develop children's palliative care services. ACT, the UK Children's Palliative Care organisation received funding to develop a practice resource for GPs.AimsThe presentation will provide an introduction to the Handbook in Children's Palliative Care for GPs. The resource aims to support GPs in their key role in supporting children and young people with palliative care needs and their families, in understanding the complex needs that they will have, and having an overview of the network of service providers involved and engaged with the wider primary healthcare team. It will also cover the range of ‘What’s my role?' resources which were developed in the wake of the Handbook and provide an introduction to the 30 m stars website which offers access to a range of resources to support services and practitioners in their work with children, young people and their families.ConclusionA range of resources are available to support primary care practitioners and others as they consider their role in supporting children and young people with life-limiting/life-threatening conditions and their families.
Engaged clinical ethics in palliative care: generating consensus and minimising conflict in decision-MAKING
Authors: Gannon Craig , Hunt Geoffrey , Gallagher Ann 
Published: March 2012

BackgroundSocial, legal and healthcare changes have created an increasing need for more explicit ethical review within end-of-life care. Multi-professional Clinical Ethics Committees (CECs) now support decision-making in an increasing number of hospitals and hospices. A number of ethical frameworks have been suggested to structure or guide their deliberation. However, the rather abstract nature of the existing ethical frameworks does not allow easy integration into everyday clinical practice.AimsTo develop a fit for purpose deliberative framework derived from long-term discussion at one UK hospice.DesignUsing qualitative content analysis, a thematic structure that could serve as a deliberative framework was drawn from the analysis of the anonymised records of CEC discussions at a hospice.Data sourcesAnalysis of approved written summaries of discussion from quarterly hospice CEC meetings over four years (2007–2011). The core membership of CEC included external support from two Professors/one Reader and internal multi-professional representation; medicine; nursing; education; chaplaincy; physiotherapy; speech and language therapy; and social work.ResultsFive themes were identified and related in a structure: timeliness of decision-making; holistic care; contextual openness; values diversity; and consensual understanding.ConclusionsAn alternative ethics framework was generated from the realities of everyday practice. Analysis of the discussion summaries from a hospice CEC identified five themes; these appeared to be at the root of most of the problems, dissatisfaction and failures within the scenarios discussed. The thematic structure derived from this analysis of the CEC summaries can serve as an ‘engaged clinical ethics framework’ for deliberation on cases and situations. Moreover, as part of organisational learning, promotion of the emerging virtues generated by the identified themes should improve consensual decision-making and minimise conflict, to thereby enhance the quality and dignity of care.
A specialist led community based subcutaneous diuretic service for end stage heart failure
Authors: Hookey Claire , Satchithananda Duwarakan , Ingram Angela , Crawford-Thomas Sarah , Barker Philomena 
Published: March 2012

IntroductionMultiple hospital admissions are a common feature of advanced heart failure(HF), accounting for significant healthcare expenditure. Admissions are often precipitated by increasing breathlessness, and inpatient intravenous diuretics are administered. Collaboration between specialist palliative care(SPC) and HF services locally resulted in a specialist led service able to provide, monitor and titrate subcutaneous(sc) diuretics in the community.AimsTo determine patient and carer views • To identify potential demand for the service. To calculate cost savings.Methods1. A focus group of HF patients and their carers. 2. All patients in the supportive and palliative phase of HF under a single cardiologist (DS) were identified. 3. A cost analysis was performed based on the knowledge that any patient given sc diuretics would previously have been admitted.ResultsThe focus group uniformly welcomed the service. • In 1 year, 56 patients were identified who may be suitable for the service in the future (only 17 required SPC review). • 13 patients (mean age 76.9, NYHA IV) received s/c diuretics, 6 at home and 7 in the hospice. Total number of episodes of treatment was 27. Of the 6 patients who have died, 5 died in the hospice and 1 at home. • The total predicted cost using the tariff for heart failure with complications and comorbidities was £112203. The total cost of community services (including input by all nurses, GPs and SPC services including hospice admissions) was £70916. This is a cost saving of £41287 for all 13 pts.ConclusionA specialist led community based subcutaneous diuretic services is welcomed by patients with end stage heart failure and has the potential to deliver significant cost savings.
Being there – for children and families
Authors: Maynard Linda , Leeson Janet 
Published: March 2012

Services across the UK are challenged to provide 24/7 care to support babies, children and young people with life-threatening conditions and their families living with their condition 24 h a day, 7 days a week. This poster outlines an evaluation of an innovative approach to 24/7 specialist symptom management support throughout Norfolk, Suffolk, Cambridgeshire and North Essex. A model was developed incorporating evidence and standards from Better Care: Better Lives (DH, 2008) and ACT Care Pathway Standards (ACT, 2007). Principal objectives were to: • develop a 24/7 symptom management Team • offer open access to families and professionals • grow a medical network • collaborate with others to develop common approaches, shared pathways and management plans.FindingsFollowing recruitment, a live service was offered from October 2010, using five children's clinical nurse specialists and an outsourced call handling service. Sixty calls were received out of office hours during the first 6 months and 79 children entered the caseload • Using DH £30 million funding, a series of workshops were held which enabled a successful business case for the commissioning of a managed medical network from April 2012 • The team has catalysed a number of developments, including common protocols for syringe driver use, universal end of life plans and shared symptom management plans. Benefits for families: • Prompt access to remote advice and hands on nursing care • Care in their preferred location • Team approach gave families confidence that out of hours contact was with individuals who knew their situation • Surprises included team members becoming key workers and catalysis of proper symptom management plans for children.Challenges• Understanding this innovative role and service by other professionals • Some current providers perceived the Team as a threat • Large geographical area covered.
Development and implementation of psychological care in a children's hospice
Authors: Wray Jo , Lindsay Bruce , Crozier Kenda , Andrews Lauren , Leeson Janet 
Published: March 2012

BackgroundThe Department of Health recently offered funding to support children's palliative care projects, one of which addressed the provision of psychology services within specific children's hospices. The aims of the project were to review best practice in the current provision of psychological support for children with palliative care needs and their families, identify methods of assessing need and evaluating outcomes, and determine how psychological services might link with and enhance the model of supportive care already provided by the hospices.MethodsA mixed methods approach was adopted, involving focus groups with family members and hospice staff, individual face-to-face or telephone interviews with family members, hospice staff and external staff and a web-based survey for parents. Topics covered included the assessment of psychological need and how need is met, the provision of specialist services and any gaps in provision, and the use of assessment and outcome measures. Interviews were recorded and transcribed verbatim and analysed using thematic coding.ResultsNinety-five hospice staff, 28 external staff and 74 family members participated. All staff currently provide psychological support at level 1 (NICE 2004), some provide support at levels 2–3 but there is no provision at level 4. However, there is an untapped and unrecognised resource of existing staff skills within the hospices. Validated tools are not used for assessment or evaluation and some concerns were raised about the mechanisms for families and staff to provide open and honest feedback. Particular areas of need for specialist intervention included the management of challenging behaviour and supervision for staff managing complex situations.ConclusionProvision of specialist psychology services would be of benefit to the hospices, their patients and families, and external staff. Such a role needs to be embedded in a systemic model of working and have strong links with other professional groups.
Guidelines for withdrawal of ventricular assist devices
Authors: Clark Stephen , Wrightson Neil , Louw Stephen , Regnard Claud 
Published: March 2012

BackgroundAdvanced heart failure is one of the most common causes of admission to hospital. Patients may be treated with cardiac transplantation but, due to an unprecedented shortage of donor organs, some now receive ventricular assist devices (VADs) – mechanical pumps implanted alongside the heart to augment cardiac output. Patients may be implanted as rescue therapy, for long term heart failure management or as a bridge to transplantation. Some patients now reach end of life with a VAD in situ, either due to device related complications (stroke, infection) or through the development of terminal intercurrent disease such as cancer.AimsTo develop guidelines for the withdrawal of VAD therapy at end of life. Issues: Scenarios will be presented to illustrate a guidelines algorithm we have developed for management of these cases, for example a patient after massive stroke with a device in situ, and a patient in a hospice setting with terminal cancer. Decision frameworks for withdrawal will be described, underpinned by the Mental Capacity Act 2005. Due to the patient's underlying cardiac output, death will not necessarily immediately follow switching off the device and this should be anticipated and the expectation managed. All devices have in built alarms to warn of device malfunction but these will cause much disruption at end of life. Device specific management with the help of relevant specialists is crucial to avoid distress. Use of best interests meetings, independent mental capacity advocates and advance care planning are encouraged within our framework.ConclusionWith increasing numbers of devices implanted in the UK, the issue of end of life care in VAD patients will challenge palliative care teams. Expectations must be managed and knowledge of device alarm systems is crucial to avoid distress at end of life. Advance care plans, advocacy and multidisciplinary working are strongly recommended.
Place of death, end-of-life transitions and cognition: a population cohort aged 85 and older
Authors: Perrels Anouk , Fleming Jane , Zhao Jun , Farquhar Morag , Barclay Stephen 
Published: March 2012

BackgroundDespite fast-growing ‘older old’ populations, place of care trajectories for very old people approaching death with or without dementia are poorly understood. This study compares place of death and end-of-life transitions in place of residence experienced by ‘older old’ people of different cognitive status and, if ascertainable, dementia status.MethodsDescriptive analysis of prospectively collected data linked with mortality records of n=283 participants in the UK population-based Cambridge City over-75s Cohort (CC75C) with cognitive assessments <1year before they died aged ≥85 (n=104 of known dementia status).Results69% were community-dwelling (home/sheltered housing) <1year before death, as were 40% of those with severe cognitive impairment or dementia. By the time of death only a small minority had changed address, according to their ‘usual address’ on death registration. However, for 55% this ‘usual address’ was not the place of death: in the period leading up to death over half moved their place of residence or care and died away from their ‘usual address’ (72% from community addresses, 20% from institutions). This discrepancy was greatest for those with intact cognition. Hospital was the most common place of death for all but the most cognitively impaired, whereas for individuals with severe cognitive impairment or dementia it was a care-home.ConclusionThese results provide important information for planning end-of-life services. The majority of very old community-dwelling individuals, especially those with severe cognitive impairment, died away from home, perhaps suggesting insufficient support in the period prior to death. Findings also suggest long-term care but not sheltered settings may avoid acute hospital admissions. Further research is needed on the effect of care transitions on people with cognitive impairment and dementia. Complex care needs of ‘older old’ people approaching death may involve a change in locus of care: more individualised end-of-life care approaches are needed in all settings.
‘There is always something else we can do’: staff perspectives on sedation in end of life care
Authors: Seymour Jane , Browne Jayne 
Published: March 2012

BackgroundFew studies take a qualitative perspective on decision-making surrounding sedation practice in end of life care for cancer patients. The UNBIASED study (UK Netherlands Belgium International Sedation Study) comprises three linked studies in the UK, Belgium and the Netherlands. This paper reports preliminary UK findings.AimTo examine what specialist palliative care doctors and nurses understand by sedation in end of life care for patients with cancer, and their experiences with the practice.MethodsProfession specific focus groups with doctors and nurses working in specialist palliative care settings (two hospices; one hospital support team). Data were analysed with the aid of NVivo, taking a constant comparison approach.Findings43 staff (25 nurses and 18 doctors; range of palliative care experience from 8 months to 29 years) took part in six focus groups. Sedation was seen as an aspect of clinical treatment required for many patients, often for the relief of anxiety or to aid ‘time out’ from distress. Continuous sedation (as opposed to ‘as required’) was reported as a treatment for terminal agitation, to keep patients safe and comfortable. Using continuous deep sedation for refractory symptoms with the explicit intent of reducing consciousness prior to death was an occasional experience. Some found decision-making difficult when patients expressly requested sedation or where suffering was primarily existential. Offering the option of sedation to patients was seen as an important means of acknowledging their suffering. Where patients lacked capacity, staff sought to make decisions by team consultation and in the light of family concerns. Barriers to sedation practice included negative attitudes of other staff and patients families and a desire not to be thought to be hastening death.ConclusionThese findings inform patient centred case studies in the next phase of this study in hospice, hospital and community sites.
Development of guidelines for the management of diabetes in palliative patients
Authors: Bentley Jane , MacLeod Jean , Peacock Deborah 
Published: March 2012

BackgroundDiabetes is becoming increasingly common. New onset diabetes can occur due to steroid therapy or malignancy. The management of diabetes in palliative and end of life care tends to be very variable and idiosyncratic.AimsTo develop guidelines to provide a practical, coordinated approach to managing diabetes in palliative patients across primary and secondary care.MethodsA literature search was conducted to determine the guidelines available for the management of diabetes in palliative patients. A team of doctors including a diabetes and palliative medicine consultant, GP and hospice practitioner held a series of meetings to discuss and produce comprehensive guidance for the management of diabetes from the diagnosis of a palliative illness up to and including the last days of life. Draft guidelines were shared with other diabetes consultants and nurses for comment. Feedback was sought from ward, district, hospice and Macmillan nurses.ResultsThe guidelines explain the change in emphasis of diabetes care in palliative patients, focusing on quality of life rather than the prevention of long term complications. They advise on drug management, but also stress the importance of psychological and family support. Guidance is given on the management of steroid induced diabetes and a flowchart for dying patients was designed to be used alongside the end of life care pathway.ConclusionThe evidence base for comprehensive guideline development is poor so a pragmatic interspeciality collaborative approach working between primary and secondary care was taken to develop guidelines aimed at improving integrated patient care. They are adopted locally and by neighbouring Trusts. The guidelines have been presented throughout the Northern Region and it is hoped that a national approach will be developed in part based on our experience. Research is needed to assess the effect of the guidance on patient care.
Complementary therapies for people with motor neurone disease: extending a cancer care service
Authors: Hughes Philippa , Seymour Lynn , Hollinger Hannah , Evans Jane , McDermott Christopher , Shaw Pamela 
Published: March 2012

BackgroundCavendish Cancer Care (CCC) is a charitable organisation in Sheffield providing assessment, counselling and complementary therapies for people with cancer and their families. Motor Neurone Disease (MND), is characterised by progressive deterioration: muscle wasting, speech, swallowing, and breathing difficulties. A year-long pilot study for patients and carers, funded by South Yorkshire MND Association was set up using the CCC model of care, in conjunction with the MND Team at the Royal Hallamshire Hospital. We report here on patient experiences, using our standard evaluation procedures.AimTo assess the value and outcomes of a supportive care service for people diagnosed with MND.MethodData was collected over 1 year. Clients were seen at home or at the Centre, and completed the Measure Yourself Concerns and Wellbeing (MYCAW) scale, in which clients score their nominated main concerns on a 7-point scale at assessment, repeated at post-therapy review, and give comments on the service received.ResultsTwenty-seven people, with ages ranging from 50 to 83, of whom 14 were men, used the service during the year. Fifteen were seen in their own homes, and twelve at the Centre. Physical symptoms were prominent among the concerns, along with emotional issues, the need for relaxation, for information, and for general wellbeing. Twenty-four patients received therapy: massage/aromatherapy massage, shiatsu and reflexology were chosen most often. Follow-up scores were available for 16 patients, with improvements in first nominated concerns for eleven, static scores for three and deterioration for two. Comments from those reporting no improvement suggest that there were benefits, but not specific to the concern, or transient.ConclusionCompared to our usual cancer populations, patients with MND showed a higher proportion of symptom-based concerns. Improvement was reported by a smaller majority with MND compared to cancer patients. General benefits of the therapies were highlighted.