bluuebunny/crossref_metadata_2025_split huggingface dataset:
A SPECIALIST PALLIATIVE CARE SERVICE FOR PARKINSON'S DISEASE: REVIEW OF END OF LIFE OUTCOMES
Authors: Adams Debi , Richfield Edward , Johnson Miriam , Jones Edward , Campbell Colin 
Published: February 2014

BackgroundNational guidance supports the need for specialist palliative care (SPC) in Parkinson's disease (PD). Access to SPC remains poor and evidence to support palliative care strategies in PD is scarce.InnovationThe Scarborough PD SPC service is a collaboration between St Catherine's Hospice and the movement disorder clinic at Scarborough General Hospital. We report on SPC service utilisation and outcomes.EvaluationThe case-notes of 47 PD patients consecutively referred to SPC (Nov 2010 to May 2013) were retrospectively reviewed (34 male; mean age 77 yrs; range 53 to 99). Hospice services/interventions received included: palliative neurology CNS support (100%); future care planning (60%); day hospice attendance (26%); hospice admission for respite care (21%), symptom management (21%) and care of dying (14%). 23 patients died. Average time to death from referral was 194 days (range 2–753 days) and from diagnosis was 10 years (range 2–25 years). Place of death was known for 22/23 patients: acute hospital bed (13%); hospice (26%); home (13%); care home (34%) and community palliative care bed (8%). Dying was anticipated in 91% of patients (21/23), all of whom had a DNACPR order and an advance care plan or best interest decision. Administration of anti-Parkinson's medication in the dying phase was problematic and rigidity a common symptom, although rarely with signs of distress. Average time from identification of dying to death was 8.3 days (range 2–23 days) compared with 29 hours across all diseases (MCPCI 2012).ConclusionsPeople with PD and palliative care needs can benefit from referral to SPC. Rates of death in hospital were reduced and deaths at home/hospice increased compared with UK data (Snell K 2009). The dying phase, although prolonged, can be managed well and choice and comfort at the very end of life are achievable.
DEVELOPMENT OF A HOSPICE REFERRAL PATHWAY FOR PATIENTS WITH ADVANCED INTERSTITIAL LUNG DISEASE
Authors: Powell Barbara , Agrawal Sanjay 
Published: February 2014

BackgroundRecognising the inequalities between the care offered to patients with malignant and non-malignant disease, we looked to improve the care given to patients with advanced respiratory diseases. In order to pilot the service we initially focused on patients with advanced interstitial lung disease (ILD).AimTo develop collaborative working practices between the hospice team and the local respiratory physicians to produce a seamless pathway for ILD patients as their condition advances. Such a pathway could be modified to improve the care of patients with other advanced non-malignant respiratory diseases.MethodAn initial audit of patients with advanced ILD admitted to the acute hospital, encompassing the SPICT criteria, allowed us to identify a cohort of patients who had sub-optimal symptom control and might ideally have been cared for in the non-hospital setting. We then developed a pathway in collaboration with the lead ILD physician aimed at earlier identification of such patients via the hospital MDT or clinic setting, to encourage timely referral to the specialist palliative care team.ResultsIdentified patients were assessed for non-pharmacological and pharmacological interventions to improve breathlessness mastery and alleviation of other symptoms via the multi-professional team. On-going support and advanced care planning /the development of an emergency health care plan were also encouraged where appropriate. Of the 29 patients referred 6 have subsequently died, 5 in the hospice, one supported at home. 4 further patients have had an in-patient stay for symptom control, 8 have an ACP/EHCP in place. Of those referred, three patients have required hospital admission but none have subsequently died in the acute hospital.ConclusionWith appropriate collaboration it is possible to develop services to produce a major improvement in the care for patients with advanced non-malignant respiratory disease.
WORKING COLLABORATIVELY TO IMPROVE ACCESS TO SPECIALIST PALLIATIVE CARE FOR PEOPLE WITH END STAGE LUNG DISEASE: AN EXPLORATORY PILOT STUDY
Authors: Thompson Alice , Green Rosalind 
Published: February 2014

BackgroundThe need to improve access to specialist palliative care services for people with end stage non-malignant lung disease is well evidenced. The unpredictable disease trajectory however challenges the traditional model of end of life care. The desire to improve access to services for this population locally inspired an exploratory pilot study integrating both specialist palliative care and respiratory medicine.An existing respiratory out-patient review clinic has been adapted to focus on advance care planning, symptom management and assessment of needs on a monthly basis. Patients with advanced lung disease are invited to the clinic in particular those returning following an episode of non-invasive ventilation for type 2 respiratory failure. The clinic is provided jointly by a Consultant in Respiratory Medicine and a Clinical Nurse Specialist in palliative care.AimsTo introduce the concept of and facilitate discussions around advance care planning for patients and carers.To take a pro-active approach to support with emotional and physical needs.To provide patients with the opportunity to access a member of the specialist palliative care team and referral to appropriate services as needed.To improve communication with the primary care team.To explore the needs of patients and the interventions required to support them adequately.To evaluate whether the model of care is effective for patients and professionals.ConclusionInitial feedback is highlighting the benefits of the service to patients, carers and professionals. Both qualitative and quantitative data is being collected throughout the 9 month pilot study. This valuable information will help to inform decisions around the feasibility and effectiveness of the clinic for the future.
ANTICIPATORY PRESCRIBING: COMPARISON OF THE NUMBER OF DISCHARGE PRESCRIPTIONS WITH THE NUMBER OF FAST-TRACK DISCHARGES
Authors: Khoo Grace , Dickman Andrew , Morris Tracey , Montgomery Emma , Whitfield Andrea 
Published: February 2014

BackgroundIn September 2012, an anticipatory prescribing policy, the ‘Just in Case Four Core Drugs’ (JiC4CD) was introduced across the healthcare economy after a multidisciplinary group of clinical experts reviewed current practices. The JiC4CD policy seeks to deliver optimal care to patients with palliative illness in the community by:supporting patient choice if they wish to remain at homeavoiding distress caused by poor access to medicines, by anticipating needavoiding the distress caused to patients, carers and healthcare staff due to not having the correct medicine readily available and any attendant delays in achieving symptom controlreducing inappropriate admissionsAnticipatory drugs are dispensed for patients thought to be in the last four weeks of life who are being discharged from hospital using the fast-track discharge process. The availability of JiC4CD in the home support proactive symptom control by promoting anticipatory prescribing.AimsTo identify the number of patients who received JiC4CD upon discharge from Blackpool Victoria Hospital and compare with the number of fast-track discharges.MethodElectronic discharge prescriptions over a 12-month period were analysed JiC4CD and the figures were compared with the number of fast-track discharges.ResultsA total of 211 discharges for JiC4CD were dispensed by the hospital pharmacy over the 12 month period. There were 227 fast-track discharges during the same period.ConclusionThe study showed that 93% of fast-track discharges received JiC4CD. Ideally, all patients discharged utilising the fast-track discharge policy should receive JiC4CD. One reason for the discrepancy is the potential for rapid discharges to occur after the hospital pharmacy has closed. This study has ensured a review of hospital practices and procedures.
THE CLINICAL AND STRATEGIC IMPACT OF GENERIC DOCUMENTATION FOR ANTICIPATORY PRESCRIBING AT THE END OF LIFE
Authors: Smith Kathryn , Dickman Andrew , Drinkwater Lisa , Janet Purdie , Atcheson Lynn 
Published: February 2014

BackgroundThe End of Life (EoL) Care Strategy (2008) recommends that consistent ‘co-ordination of care’ and ‘delivery of high quality services in all locations’ is essential across a healthcare economy. Due to historical development and redesign of community services within a large healthcare economy in the North West of England, there were three different community policies for anticipatory medication at the EoL and five different prescription and authorisation forms. Collaborative working is essential to develop consistent, high standard EoL care while minimising potential risk in all care settings.AimTo assess the clinical impact of generic documentation for ‘Just in Case 4 Core Drugs’ (JiC4CD) anticipatory prescribing at the EoL across a healthcare economy.MethodA multidisciplinary group of clinical experts from all the key stakeholder organisations reviewed the existing processes and documentation, and an ideal clinical pathway was agreed. A Task and Finish group designed and implemented new documentation in line with this pathway, including:prescribing guidancesingle prescription and authorisation bookletJiC4CD pack (issued from community, hospital and hospice pharmacies)audit formResultsThe clinical impact of the JiC4CD booklet and pack was demonstrated with regard to:EoL symptom controlprescribing and administration clinical incidentscrisis domiciliary visits and unplanned hospital admissionsplace of deathcarer satisfactionhealthcare professional satisfactionFacilitating factors and barriers to implementation are discussed.ConclusionSingle generic documentation for JiC4CD anticipatory medications across a healthcare economy not only has a positive impact on individual patients, but the process also demonstrated benefits of cross-organisational partnership collaboration to achieve ‘high quality care for all adults at the EoL’.
DYING IN HOSPITAL-IS THERE AN UNMET PALLIATIVE CARE NEED FOR PATIENTS WHO DIE WITHIN 48 HOURS OF ADMISSION?
Authors: Bruckner-Holt Caroline , Baker Alice , Aladin Hafiz , Boulstridge Lisa 
Published: February 2014

BackgroundThe majority of people in the UK die in hospital and many more die in hospital than are seen by the inpatient specialist palliative care team (SPCT).AimsTo assess the population of patients who die in hospital and to establish if there are specialist palliative care needs in patients not referred to SPCT.MethodsWe conducted a retrospective case note evaluation and collection of death certificate data of all 109 patients that died at Good Hope Hospital Birmingham in September 2012. We assigned Gold Standards Framework (GSF) prognostic indicator guidance to assess possible palliative care need. We assessed the time of admission to death.Results38/109 patients died within 48 hours of their admission and causes of death were from a range of conditions. Patients died in the emergency department or assessment units and had no SPCT involvement – 8 of these patients were known to a community SPCT, but only 1 patient was seen prior to death by the hospital SPCT. 14/38 scored 0 on GSF prognostic indicator guidance criteria (no indication of palliative care need), 15/38 scored 1, 6/38 scored 2, and 3/38 scored 3, suggesting they would benefit from a palliative care approach.ConclusionAssessment of palliative care need using the GSF guidance can identify many patients who might benefit from SPCT involvement as they die in hospital. Many patients die within 48 hours of arriving in hospital and emergency, acute medical/surgical physicians do not identify these patients as requiring SPCT involvement. Greater education in assessment of palliative care need for these clinicians may increase referral to SPCT and improve end of life care for this patient population. SPCT will need to alter working practices, including out of hours working, if we are to have a role in the care of this group of patients as they die.
PATIENTS WHO DIE IN HOSPITAL—IS THERE AN UNMET PALLIATIVE CARE NEED?
Authors: Bruckner-Holt Caroline , Baker Alice , Aladin Hafiz , Boulstridge Lisa 
Published: February 2014

BackgroundThe majority of people in the UK die in hospital and many more die in hospital than are seen by the inpatient specialist palliative care team (SPCT).AimsTo assess the population of patients who die in hospital and to establish if there is an unmet specialist palliative care need in patients not referred to the SPCT.MethodsWe conducted a retrospective case note evaluation and collection of death certificate data of all 109 patients that died at Good Hope Hospital Birmingham in September 2012. We assigned Gold Standards Framework (GSF) prognostic indicator criteria to assess possible palliative care need. We assessed differences between the population of patients referred to the SPCT and those that were not.Results19/109 patients were seen by SPCT and 19/109 were known to community SPCT. 48/109 patients died <72 hours following admission. 29/109 patients scored 0 on the GSF criteria, with 47/109, 26/109 and 7/109 scoring 1, 2 and 3 respectively. Patients referred to the SPCT scored more highly on GSF criteria than those not referred 1.6+/−0.2 versus 1.0 +/−0.1,p=0.004. The time from admission to death was longer in those referred to SPCT 16 days +/−5.6 versus 8 days +/−1.4 in the group not referred,p=0.04.ConclusionsAccording to assessment of GSF prognostic indicator criteria, nearly ¾ patients dying within the hospital meet criteria for palliative care need. Those patients that are referred to SPCT score higher so perhaps constitute a group with more comorbidity and thus identification of need is easier. Time to death in the SPCT group was also longer, suggesting those that do not die ‘quickly’ are identified more readily as having palliative care needs. Increased awareness and education around the importance of assessment of palliative care need amongst clinicians may increase referral to SPCT.
MEASUREMENT FOR IMPROVEMENT: END OF LIFE CARE IN ACUTE HOSPITALS
Authors: Kite Suzanne , Hayes Anita , Pring Andrew , Rees Elizabeth , Verne Julia , Shouls Susanna 
Published: February 2014

Background‘Measurement for improvement (MfI)’ is a structured methodology to develop and use metrics to support effective change management.1 2It differs from measurement for accountability and approaches used in clinical research3for example in its use of statistical process control or run charts.4There is a need to be able to measure the quality of end of life care (eolc) in acute hospitals.5 6There are a number of existing metrics in eolc.7 8 9Selecting the best measures to support transformation is a challenge. The Leeds Teaching Hospitals NHS Trust (LTHT) joined the Transforming End of Life Care in Acute Hospitals Programme launched in September 201110which recommended MfI methodologies.AimsTo develop an effective and appropriate set of measures that meet the interests of different groups (patients, families, providers and commissioners) applying the measurement for improvement methodology (meeting aims; real time measurement and reporting, and combining outcome, process and balancing measures).ResultsThe application of ‘Measurement for improvement’ methodology to the eolc initiatives of the LTHT, and other acute hospitals in the Transform Programme as appropriate, will be presented. The benefits and limitations of existing metrics in the acute hospital setting will be analysed.ConclusionMeasurement for improvement methodology is a practical methodology with scientific rigour if applied appropriately. Real time measurement supports change in practice. An approach to metrics in this setting will be recommended, for the evaluation of service improvement programmes and to monitor the quality of clinical care. There are known challenges for measurement of eolc in acute hospitals such as the dynamic nature of the patient population, and the crisis nature of hospital admission.
UNCOVERING SHADOWY SECRETS: HOW ULTRASOUND CHANGES HOSPICE CARE
Authors: Jones Tim , Groves Karen 
Published: February 2014

BackgroundUltrasound identification of abnormal fluid collections is frequently required for patients with advanced disease who have little reserve to spend on investigational procedures. Current patient pathways via hospital radiology departments are exhausting and introduce delays into management which they can ill afford.AimTo see whether point of care ultrasound for answering specific clinical questions would improve patient experience whilst reducing delays in appropriate treatment.MethodInitial level one point of care training of two members of medical staff alongside acquisition of a suitable ultrasound machine from generous local donations was undertaken in 2010.ResultsA detailed retrospective review of 3 years use will be available for the final presentation but the first 30 months use shows that 104 patients underwent 168 point of care scans which were used to locate abnormal intra abdominal, pleural fluid and bladder collections and resulted in 85 subsequent procedures and prevented further investigation or blind procedures in the rest. Other identified abnormalities are detailed in the presentation.ConclusionUltrasound helped to answer a specific clinical question on each occasion of use and allowed for a swiftly crafted, tailored, individual management plan avoiding protracted investigative procedures. Patients reported experiences were positive and staff feel patients receive a more effective and efficient service. This has led to all substantive medical team being trained to level one and consideration of further service development leading to point of care ultrasound in the community.
MIRRORING FAMILY IDENTITY THROUGH DOCUMENTARY FILMMAKING: INNOVATIVE WAYS OF WORKING WITH FAMILIES IN A HOSPICE SETTING
Authors: Haraldsdottir Erna , Hardie Amy , Kendall Marilyn 
Published: February 2014

BackgroundA film artist was resident in a Scottish hospice for a year working with staff, patients and families using and teaching filming and editing skills to produce documentary films.MethodQualitative interviews explored patients and family members experience of making a documentary film about aspects of their family lives. 15 interviews were completed, and transcribed verbatim. Thematic analysis was used to analyse data, providing order to the data set and allowing for key themes to emerge and be identified.Results12 families made films in collaboration with documentary film artist. These films had various purposes, which were decided in collaboration. Some had the purpose of being ‘legacies’ others were ‘portraits’ allowing the patient to see and take stock of own life story; others were simply ‘play spaces’, where patients could express the parts of themselves that may get submerged in the problem-solving ethos of a clinical setting. Each film mirrored strongly the families' identity.Patients reported they enjoyed specifically seeing the closeness between the family members and the positive functioning of the family reflected in the film. The legacy aspect of the film is in particular important to patients with young children.Documentary film goes further than the traditional ‘memory box’ as it captures the day to day life of the family together reflecting the interaction and relationship the patient has with his/her family as well as mirroring the family identity.ConclusionWorking with a film artist in a hospice has equipped hospice staff with new technical knowledge and a ground-breaking documentary intervention to use with families where one family member is facing the end of life.FundingCreative Scotland.
LIVING IN THE SHADOW OF CANCER: THE EXPERIENCE OF FIRST DEGREE RELATIVES OF PATIENTS WITH ADVANCED COLORECTAL CANCER
Authors: Baker Nicola , Dawson Angus , Redwood Sabi , Armour Kathy , Meystre Chantal 
Published: February 2014

BackgroundIt is widely accepted that a diagnosis of cancer affects the entire family. However, research has centred on primary caregivers, and little is known about the impact on the wider family. The literature has concentrated on female relatives of breast cancer patients. Studies involving relatives of colorectal cancer patients have focused on their attitudes to screening, or behavioural interventions, and have not attempted to identify their experiences, beliefs or needs.AimsTo gain an in depth understanding of the experiences, beliefs and needs of first-degree relatives of patients diagnosed with advanced colorectal cancer.MethodsSemi-structured interviews were conducted with adult children or siblings of patients with advanced colorectal cancer, referred to a palliative care service. Interviews explored their experience of a cancer diagnosis in the family and their beliefs about cancer. Data was transcribed verbatim and analysed qualitatively using a constant comparison method.Results5 categories emerged from the data;▸1) Emotional burden - The impact of witnessing a loved one with progressive disease was enormous. Relatives described the “shadow” cancer cast over the whole family, and feelings of fear on multiple levels. Emotional challenges were even greater when needing to support several generations within the family.▸2) Practical burden, which was high even if they did not have a caring role, or live locally.▸3) Changing family roles accompanying the anticipated death of their relative.▸4) Feeling “out of the loop” and a need for more information.▸5) Awareness of own risk – Some relatives described an increased sense of their personal risk of cancer, which exacerbated their fears and represented a significant barrier to open communication in the family.ConclusionThis study highlights the profound impact of advanced colorectal cancer on the wider family, and suggests a role for palliative care in identifying and supporting their unmet needs.
UNDERSTANDING THE BARRIERS TO IDENTIFYING CARERS OF PEOPLE WITH SUPPORTIVE AND PALLIATIVE CARE NEEDS IN PRIMARY CARE
Authors: Carduff Emma , Finucance Anne , Kendall Marilyn , Jarvis Alison , Harrison Nadine , Greenacre Jane , Murray Scott 
Published: February 2014

BackgroundCaring for someone at the end of life can be physically and emotionally demanding. At the same time carers are coming to terms with the imminent loss of the patient. Carers are often ambivalent about their own needs and are reluctant to self-identify as a caregiver in need of support.AimsThis study set out to explore the barriers to, and strategies for, identifying carers of people at the end of life in primary care, and to understand why carers do not self-identify.MethodsThis study triangulates three sources of data – a review of the care giving literature, a synthesis of data from previous carer research, and focus groups with current and bereaved carers and health professionals.ResultsBarriers were identified in three core categories. 1) Transition into the caring role was seen as a gradual process and carers did not necessarily identify with being a ‘carer’, meaning support was often initiated in response to a crisis with the patient or the carer. 2) As the patient's illness deteriorated, caring was all-encompassing meaning that carers were managing competing demands and prioritised the needs of the patient, often at the expense of their own. 3) The role of the GP in supporting carers was as ambiguous. GPs were perceived to lack knowledge about available services and their reactive, rather than proactive approach, meant carers were less likely to see their needs as legitimate and ask for help.ConclusionsEncouragingly, health professionals in this study acknowledged the importance of identifying and supporting carers. Strategies to identify and support carers should be commenced early in the illness trajectory to prevent crises and need to be sensitive to the complexities of the primary care context. Primary care teams also need to work together to ensure that carers' needs are legitimised so that they are empowered to self-identify.