bluuebunny/crossref_metadata_2025_split huggingface dataset:
COPD referrals to specialist palliative care services (SPCS) in Salford: are we improving practice?
Authors: O'Brien Elizabeth , Norris Ann , Perkin Olwyn , Donnelly Kirsten , Gomm Stephanie 
Published: March 2012

BackgroundCOPD is a leading cause of morbidity and mortality worldwide with a high physical and psychological symptom burden. A joint Palliative Care and COPD Working Group was established in 2007 to address the needs of patients with end-stage COPD in Salford, England where there is a higher prevalence of COPD than the national average (2.4% vs 1.4%).The group reviewed referrals to SPCS over a 12-month period before and after commencing joint working to establish their source, reasons for referral, and outcome. Nine audit standards were derived for evaluation of future practice. Aim: To audit the referral, initial assessment and outcome of all referrals to SPCS in Salford between October 2010 and March 2011 for patients with a primary diagnosis of COPD and compare to data obtained in 2007/8.MethodA retrospective case note review of all referrals to Salford SPCS (hospital, hospice and community) using a standardised data collection tool. Results: 95 referrals received by SPCS in a 6-month period during 2010/11 were compared with 21 in a 12-month period in 2007/8. 57 referrals (39 patients) were analysed: Prognostic information was evident in 43 % vs 39% in 2007/8. 59% of patients were GSF registered at referral compared to 52% in 2007/8; with the majority discussed regularly at primary healthcare meetings. Overall, there was a higher symptom burden elicited and documented with advice given on additional treatment. Preferences for future care were discussed in 37% of assessments but only completed in 20%, compared to 28% in 2007/8.ConclusionThere was a significant increase in the number of referrals to SPCS between 2007/8 and 2010/11, with 1 in 4 patients accessing multiple services. Areas of practice improved in particular identification of symptom burden but further collaborative work is needed to promote advance care planning in this patient group.
Are palliative care registers used for older heart failure patients?
Authors: Smith Gemma , Kirk Stephen , Jeffery H , Baxter John , Baker Lisa , Whitehead Sue 
Published: March 2012

BackgroundPalliative Care Registers (PCRs) were introduced in 2006 by the Gold Standards Framework1 (GSF) to aid General Practitioners in identifying patients nearing the end of life. Their use was supported and recommended by NICE, RCGP and the NHS End of Life Programme. Particular attention was given to non-cancer diagnoses such as heart failure.ObjectiveIdentify the proportion of older patients seen in a secondary care heart failure service who are on their General Practitioner's PCR at the time of their death. Method: Consecutive patients with echocardiogram-proven left ventricular systolic dysfunction referred to a secondary care older heart failure service between July 2001 and July 2007 and on optimal treatment were included. Electronic records were used to identify those deceased by June 2010. GP practices were contacted enquiring if a PCR was being used by the practice at the time of their patient's death and if the patient was on the register. A concurrent audit of patients referred to specialist palliative care services between January 2010 and 2011 was also carried out. The number of those patients added to the palliative care register was reviewed.ResultsGP palliative care registers were in use at the time of death of 160 patients eligible for the study (80%). 26 of these were on the palliative care register (16.25%). In the additional audit, 23 patients were referred to specialist palliative care services. Of these, 15 (65%) were on the GP palliative care register.Conclusion and AimsToo few patients with heart failure are being included on their GP Palliative Care register though this number does increase in those referred to specialist palliative care services. A method for greater recognition and education regarding these patients needs to be put in place to ensure they are identified to receive the input they require.
Paediatric end of life care pathway
Authors: Gold Libby , Wyllie Julie , Gray Sarah , McKean Helen 
Published: March 2012

BackgroundChildren's Association Scotland (CHAS) is Scotland's only children's hospice organisation and has two hospices: Rachel House in Kinross and Robin House in Balloch. In addition there is a CHAS at Home service. Aim: The aim of the project was to ensure that a consistent high standard of care was given to all children and young people at the end of life by developing a Paediatric End of Life Care Pathway (PEoLCP).MethodsA multi-disciplinary working group was established at Robin House. A review of literature was undertaken, and findings recommended a care pathway approach to support the delivery of a good quality of care during the end stages of life. Existing care pathways were also reviewed however, these were not appropriate to the paediatric setting. The group then identified the main presenting symptoms and care requirements for children and young adults at the end of life and developed a pathway specifically to address these. This incorporated elements from the Rainbow Children's Hospice Guidelines (2011).FindingsThe PEoLCP was piloted and reviewed in Robin House. The feedback concluded that using a PEoLCP helped the care staff provide proactive rather than reactive care. As a valuable ‘one-stop’ document it improves communication between disciplines, ensuring a holistic approach to care for the child and their family. It is now in use throughout CHAS. It is for the multidisciplinary team.Conclusions and RecommendationsThis pathway could be used in any setting for the care of children and young people at end of life. CHAS has recommended that the Scottish Children's and Young People's Palliative Care Executive (SCYPPEx) consider its use throughout Scotland. References: Jassal, S.S. (2011) Basic Symptom Control in Paediatric Palliative Care. The Rainbow Children's Hospice Guidelines 8th Edition (online) ACT: www.act.org.uk accessed 19 July 2011.
Quality markers in end of life care in a children's hospice
Authors: Cuddeford Lisa , Simkin Sharon , Morris Peter 
Published: March 2012

BackgroundAcorns Children's Hospice provides paediatric palliative care to children and families in the West Midlands. Currently, there are over 600 children and families who access care in the Hospice. Care and support is offered from diagnosis of a life limiting condition through death and bereavement. A key aim of the hospice is to provide excellent end of life care. In order to provide an objective assessment of the quality of care provided we audited services against standards described in the guidance ‘Quality Markers for end of life care’ published in 2009 by the Department of Health.Results/Recommendations/ActionsThe data was collected by retrospective case-note review of 15 consecutive deaths within the hospice. Analysis showed: Quality markers were met at 100% for: • recording and communicating wishes and preferences for those approaching end of life (although this varied in the specific detail) • written evidence of continuous assessment • A nominated key worker • families involved in end of life care decisions Areas for improvement and actions undertaken included: • Care pathway after death – we have now developed a pathway in line with National Guidelines • Communication with other professionals around family's hopes and wishes – we have been involved in the development of a regional tool (WMPPCN Advanced Care Plan) which we are now using. • Training programme – we have expanded and centralised this. • Refining documentation and recording of children and young people's choices at the end of life-a new procedure has been implemented so information is more easily accessible. We have found the Quality Markers for End of Life Care1 while developed for adult patients provide a useful framework to help assess care provided to younger patients.
End-of life care in chronic obstructive pulmonary disease: Are we failing our patients?
Authors: Scaife Jennifer , Murphy Stephen , Lee Mark 
Published: March 2012

BackgroundChronic obstructive pulmonary disease (COPD) is a progressive and life-limiting condition. Most patients die in hospital.AimsThis study aimed to characterise end-stage COPD and assess quality and effectiveness of end-of-life (EOL) care for patients dying in hospital from COPD.MethodsMedical records of in-patient deaths due to COPD in a 6 month period in 2009 were reviewed. Data included COPD severity assessment (Global initiative on Obstructive Lung Disease; GOLD), WHO performance status (WHO-PS) and co-morbidities. In addition, use of the Liverpool Care Pathway (LCP), EOL- prescribing and factors influencing treatment decisions were assessed.Results28 patients were included in the study; 46.4% male, mean (SD) age 74.4 (8.7) years. Most (92%) had severe or very severe (GOLD stage 3-4) disease and poor performance status (73% WHO-PS 3-4). 46% received non-invasive ventilation (NIV). Ceiling of care was documented in 53.6%. Median (IQ range) survival was 7 (2-15) days. 89% had a DNACPR order but evidence of discussion of EOL-care with patient or family was infrequent (14.3% and 64.3%) and rarely involved a consultant (25%). EOL drugs were prescribed in 28.6% and the LCP was used in 32.1%. There were no differences in COPD severity, performance status or co-morbidity between patients on/off the LCP. Patients receiving NIV were less likely to be on the LCP (25% vs 46% OR 0.44 (0.06-3.1) or receive EOL-drugs (16.6 % vs 42.8% OR 0.27 (0.027-2.2).ConclusionPoor prognosis is rarely communicated to end stage COPD patients and there is inadequate planning for EOL-care. When ‘active’ interventions such as NIV are used, it seems that EOL-care measures (such as LCP) are less likely to be considered. An emphasis on ‘life-prolonging’ treatments for COPD and a failure to recognise futility in end-stage disease results in many patients being denied adequate palliative measures. Further studies are required.
Palliative care in heart failure – results from systematic audits in an acute trust
Authors: Hookey Claire , Satchithananda Duwarakan , Anderson Susan , Barker Philomena , Howells Alison , Moss Amanda 
Published: March 2012

BackgroundThe 2009 European Society of Cardiology Position statement on Palliative Care in Heart Failure concluded that palliative care should be considered part of comprehensive care provision over the whole disease trajectory. The statement was produced by specialists, but most heart failure (HF) care is delivered by generalists. It is unclear to what extent generalists engage with palliative care in HF.AimTo audit physicians' understanding of palliative care needs and engagement with palliative care services in HF.MethodsThree audits of inpatient HF care were undertaken: acute care (n=80 inpatients), referrals to specialist HF nurses (n=50 inpatients), and HF knowledge in general physicians (n=23 physicians).Results(1)Only 6% of patients discharged were assessed by physicians to be in palliative (symptomatic treatment only) or end stage (life expectancy 6-12 months) HF. However 40% died within 6 months. (2) Physicians only occasionally consider palliative or terminal care needs of inpatients with HF. (3) Physicians rarely ask for palliative or terminal care advice from specialist HF nurses or palliative care services.ConclusionPhysicians responsible for the care of HF patients overestimate patients' prognosis. This may explain their reluctance to consider the palliative or terminal care needs of patients or to seek advice from palliative care or HF specialists. Failure to identify that patients are approaching end of life will result in inadequate discussion with patients regarding end of life issues and an absence of advance care planning. In order to implement best practice in palliative care for heart failure it will be necessary to engage general physicians and address their training needs.
Improving awareness of corneal donation: audit of practice and intervention in two clinical settings
Authors: Schofield Guy , Patel Rina 
Published: March 2012

BackgroundTwo audits were undertaken evaluating current practice relating to corneal donation in Kingston General Hospital (KGH) and Princess Alice Hospice, Esher (PAH). Current guidance recommends 100% identification of potential donors and a 100% rate of referral. A secondary aim assessed potential missed donors.MethodFourty-one patients were identified at KGH, 38 at PAH. The KGH data comprised two sets of audit data from a complete audit cycle. Eligibility for donation was ascertained via Moorfield's Hospital Eye Bank. Medical records were examined determining eligibility for donation, written evidence of assessment for eligibility, discussion with patient or family and referral for donation.ResultsIn PAH 55% patients had no contraindications. No patient had documented evidence of eligibility, patient preference, family discussion or of referral. In KGH 54% had no contraindications. KGH data includes a re-audit designed to evaluate the impact a new formulation of LCP documentation and a teaching session had on practice. Preintervention there were no documented episodes. Postintervention data demonstrated three documented assessments for eligibility, and three documented discussions with families. Despite similar percentages of potential missed donors in the two centres, the reasons for exclusion in KGH were all related to underlying medical conditions, whereas in PAH 14/17 contraindications resulted from systemic steroid use.ConclusionMany patients receiving end of life care in hospital or hospice settings could donate corneal tissue. Patient wishes were not sought in either centre. Specific assessment fields in LCP documentation and targeted education improve awareness of the issue among ward medical staff. Impending interventions at PAH include a proforma with a standard question concerning corneal donation and an information pack for staff to be given on induction. The use of adjuvant corticosteroids may prevent a patient from donating corneal tissue. If a patient wishes to donate this should influence decision making.
Mandatory training versus palliative care learning: how can we achieve both, and still care for patients?
Authors: Satchwith Karen 
Published: March 2012

BackgroundHigh quality palliative care requires skilled staff who keep up to date, despite busy clinical environments. The increasing pressure of mandatory training poses another challenge for palliative care learning.AimThe aim of this initiative was to implement a ‘bottom up’ approach to professional development for hospice ward nurses using a Plan-Do-Check-Act (PDCA) cycle, supported by a clinical practice facilitator over 1 year.MethodPlanning from January to April 2011: data was collected from three sources to triangulate findings on professional development needs: • Questionnaire: ward nursing staff • One to one interviews: multidisciplinary team members • Thematic analysis: anonymised personal development plans from ward nurses' appraisals over past 12 months Analysis provided understanding of ward nurses' learning preferences, perceived gaps and learning needs, barriers to participation in learning and factors which they felt would facilitate professional development. The next stage – ‘doing’ – involved identifying and trying out multiple approaches: • designing and giving each nurse a mandatory training record • whole-ward focus on specific mandatory training requirements, paced across the year • identifying and supporting ward champions in specific areas, for example, wound care, diabetes, etc. • establishing a weekly protected learning hour for ward nurses, involving medical and other staff in teaching and learning together • one to one coaching in computer skills for online learning • establishing clinical and practical ‘topic of the month’ for ward staff nurses, and separate parallel programme for clinical support workers. In December, questionnaires will be repeated to ‘check’ change in confidence, attitude, behaviour and perception. Analysis of this, and on-going evaluation of learning activities, will inform the ‘action’ phase of the cycle.ConclusionDetails of the PDCA cycle will be ready for reporting by February 2012.
Changing attitudes to end of life care in Kolkata, India – using help the hospices Toolkit to develo
Authors: Ford-Dunn Suzanne , Watson Liz , Mitra Sankha 
Published: March 2012

BackgroundWe were approached by the charitable hospital, Cancer Centre Welfare Home and Research Institute of Thakurpukur, Kolkata, to assist planning and delivery of a teaching programme introducing palliative care to their area. Until a few months earlier there had been no palliative care provision in Kolkata, but with a newly established domiciliary team and plans for a palliative care ward within the cancer hospital, staff needed to raise awareness among other healthcare professionals (HCP). A key barrier they identified was the commonly held belief that treatments/medical interventions must continue to the end of life, even if no longer benefiting the patient.Aimsto devise and deliver a 3 day programme on palliative care, particularly focusing on attitudes towards medical interventions at the end of life.MethodSmall group workshops were the preferred method of teaching – encouraging discussion among participants. Help the Hospices Toolkit was used as the course handbook, workshops modified to suit a 3 day programme. A team from the UK (palliative care consultant, nurse educator, oncologist and oncology nurse) were joined by experienced palliative care practitioners from elsewhere in India. 150 HCP attended – doctors, nurses, social workers and physiotherapists.ResultsParticipants were asked to complete a pre and post course questionnaire designed to detect a change in attitude: 53% of participants before the course felt that medical interventions should continue even when the patient was not responding and was close to death, compared with 31% after the course. Participants also completed a knowledge test and evaluation – which revealed immense enjoyment and satisfaction with the programme.ConclusionThe project has confirmed it is possible to change attitudes with a 3 day programme. Following its success and popularity, a repeat event is planned for 2012, alongside growth of local palliative care teams in the area.
Decisions regarding artificial nutrition for those at risk of lacking capacity: a systematic review
Authors: Clarke Gemma , Harrison Katy , Holland Tony , Barclay Stephen 
Published: March 2012

BackgroundIn many countries, artificial nutrition is frequently used when individuals are approaching the end of their lives; however, it rarely used in the UK. Many patients for whom artificial nutrition is considered are approaching the end of life and at risk of lacking capacity. For these vulnerable patients, decision-making is emotive and challenging.AimTo review the international literature concerning decisions about artificial nutrition for individuals at risk of lacking capacity due to dementia, intellectual disability or acquired brain injury (ABI). Key research questions: a) Which factors are being considered? b) Who is involved in the decisions?MethodsSearches of PubMed, AMED, CINAHL, EMBASE, PsychInfo and OpenSIGLE were undertaken for articles in English between 1990 and 2011 containing original empirical data. Hand searches were undertaken of key journals and articles. Information was extracted and analysed using NVivo and a narrative synthesis of emergent themes undertaken.ResultsSixty-seven relevant studies were retrieved: 75% included information about dementia patients, 42% ABI and 6% intellectual disabilities. The majority of studies were based in the USA (46%). The findings revealed that indications for artificial nutrition are embedded within the personal circumstances of the patient and the contextual environment of the treatment. Key decision factors include: prolonging life and quality of life, interpretation of behaviour and family/surrogate wishes. The key decision points for each patient group are modelled.ConclusionsThe majority of the international literature relates to end of life care and dementia patients. The results show that decisions about artificial nutrition do not happen in isolation. The wide variety of studies identified, the large number of different persons involved and the diversity of decisions involved indicate that artificial nutrition is not a single decision but a decision process which is embedded within context. Implications for UK practice and policy are discussed.
Can an intervention alter the perception of palliative care services for heart failure patients?
Authors: Edwards Laura , Hodgson Aruna , Arya Sanjay 
Published: March 2012

BackgroundAlthough the number of palliative care services which will accept patients with heart failure has increased in recent years, little is known currently about heart failure patients' knowledge of palliative care services or the acceptability of these services to them.AimsThe current study aimed to ascertain the perceptions of heart failure patients with regard to palliative care and whether a brief educational intervention similar to those used in Expert Patient Programmes (EPPs) can alter their perception of palliative care services and attitudes towards access to them.MethodPatients diagnosed with NYHA III/IV heart failure attending a nurse specialist-led clinic were asked to participate in the study. The patients were asked to complete a study-specific questionnaire comprising 12 questions. Each comprised a statement with 5 point Likert scale responses (strongly disagree–strongly agree). The researcher then discussed an educational leaflet regarding local palliative care services with each participant. 2 weeks later the participants were asked to return an identical postal questionnaire. For each question, mean change in response was calculated.Results36 paired questionnaires were completed. There was a significant change in patient responses to questions regarding knowledge of local palliative care services, the availability of palliative care services for non-cancer patients and collaborative working between services. There was no significant change in patients' anxiety at visiting the local hospice or meeting a palliative care specialist at home or in hospital.ConclusionThe study showed that a brief educational intervention may inform patients with heart failure about palliative care services but does not seem to alter anxiety regarding them. Further work is required to ascertain the basis of these anxieties and strategies to address them in order to ensure equitable access to all.