bluuebunny/crossref_metadata_2025 huggingface dataset:
Prescribing of breakthrough opioid analgesia in acute hospitals – a multi site audit
Authors: Wilkinson Anna , Alloway Lara
Published: March 2012

Background

All patients prescribed long acting opioids should also be prescribed short acting opioid analgesia for breakthrough pain. This audit was piloted in a single site. Prescribing practice was poor so an implementation plan agreed trust wide. One year later audit data showed a significant improvement. Another year later improvement was maintained but not increased. One barrier was rotation of staff between trusts once educated. The authors were awarded funding from HQIP to develop a multi site audit as part of a quality improvement programme.

Standards

National guidelines state that the short acting opioid dose should be one sixth of the total daily dose and no dose ranges prescribed. Opioids for breakthrough analgesia should be available as required, with a time limit between doses specified. This was agreed as hourly or two hourly. Targets: 90% of prescription doses to follow national guidelines 100% of prescription frequencies to follow guidelines 100% of prescriptions for a single dose, not a range.

Methodology

Service improvement methodology is being used for the whole audit process. Quantitative data on prescribing practice has been collected on 717 prescriptions from across 8 acute trusts. All healthcare professionals in each trust were sent a survey to help determine the underlying causes of poor prescribing practice. An audit lead in each trust recruited an improvement team to attend a 1 day service improvement workshop focused on data analysis, determining root causes, applying a priorities framework to these and establishing detailed action plans to address one priority issue in each trust. Action learning sets will be offered to site leads for 1 year followed by reaudit.

Results

Data will be presented demonstrating poor prescribing practice, varying significantly between trusts. Survey data will also be presented.

Conclusion

Common errors in opioid prescribing practice will be shared with underlying causes and implementation plans.
Revolving scheme/cash round scheme at hospice Africa Uganda
Authors: Irumba Lisa Christine , Evelyn Octivia
Published: March 2012

Introduction

Hospice Africa Uganda (HAU) was started as a catalyst to encourage the spread of palliative care for cancer patients and later also those with HIV/AIDS to improve their quality of life and reduce suffering. In addition, HAU is a model for African countries in clinical palliative care. It operates in a 20km radius from the site. Offers a daily out-patients, home visits, outreach clinic and a community day care.

Problem Statement

During that challenging time when the patients are very sick and there is no food in a home, especially when the sick are the bread winners, HAU provides some nutritional support, transport refunds and provision of basic needs. With that, patients are comfortable enough and in future when they get stronger and stable they want to continue getting that support, therefore getting very dependent.

Project Description

Patients attending day care through group therapy identified the need to start up small businesses through monthly cash round to help them meet their needs for example, school fees, and they could do this through small businesses for example, selling tomatoes, small poultry farm, mat making, charcoal selling. Patients have to be co-managed by HAU and palliative care community volunteers for easy follow up.

Conclusion

Discussions are still going on how best this activity can be continued. There is now less dependence of patients who have the small businesses.
Auditing referrals in an acute hospital to determine ward capability in common symptom management
Authors: Harris Andrea , Wheelhouse Alison , Hunter Noeleen , Walker Jane , Nicholson Alexander
Published: March 2012

Background

General Palliative Care should be provided by the usual professional carers of the patient and family irrespective of specific roles. Where more complex needs are identified, the Specialist Palliative Care Team (SPCT) is available to offer support and advice. Palliative Care Guidelines have been published to support symptom management throughout the hospital trust and awareness of these is raised during doctor induction and education sessions. A perception by the SPCT was that referred patients often have had neither a basic assessment of symptoms nor a trial of first line symptom management. Seeking evidence to support or refute this perception and to determine more accurately where teaching priorities lie, an audit of referrals and referred patients' prior management was undertaken.

Methods

50 consecutive referrals and notes were audited against agreed criteria to determine what measures had already been implemented in four areas of physical symptom management (pain, nausea & vomiting, constipation and end of life symptom management) prior to the host team involving the SPCT. The measures expected to have been implemented by the generalist team were drawn directly from symptom control guidelines. Problems identified by SPCT were also compared with reason for referral.

Results

In each of the four domains there was poor correlation between reason(s) for referral and problems identified on assessment. For example nausea and vomiting was a problem in 34% of cases but constituted only 4% of referrals. Likewise initial basic symptom management expectations were not fulfilled in any domain.

Conclusion

SPCT perceptions were confirmed. Acute hospital generalist staff are not equipped with the core knowledge to initiate symptom assessment and introduce basic palliative care symptom measures. The SPCT will develop and deliver targeted ‘micro-teaching’ sessions on the four areas of expectation to bring all wards to a basic level of competency. Re-audit will follow.
Implementation of a locality based Gold Standards Framework Register
Authors: Sadler Hilary
Published: March 2012

Background

It was identified that when community nurses were called out to palliative care patients, particularly on evenings and weekends they felt that communication regarding the status of the patient could be improved. It was acknowledged that a quick reference register of all palliative care patients would be useful to enhance continuity and bring nurses up to date quickly and efficiently.

Aims

The initiative was important in order that patients were empowered to remain in their preferred place of care, plan for the future and be able to make informed decisions about where and how they wanted to be cared for.

Method

Patients preferred place of care was documented and actual place of care and death was monitored by the Macmillan clinical nurses specialist and via the Gold standards register to identify if patients were being cared for in a place of their choice and to ensure unnecessary hospital admissions were avoided. Feedback was also monitored from the community nurses and a confidence survey was carried out retrospectively to see if community nurses skills and awareness had improved. Changes included incorporating the Macmillan Clinical Nurse Specialist into a weekly designated ‘slot’ within the community nurse meetings. At this time the Macmillan CNS: Hands over the current status of those patients on the caseload Discusses any new referrals Informs staff regarding plan of care for particular patients and potential risk factors for the patient such as those at risk of spinal cord compression, poor renal function and risk of hypercalcaemia Discusses any queries or concerns that the community nurse may have.

Conclusion

A confidence survey indicated that the community nurses were more aware of PPC and ACP. It also indicated and increased palliative care knowledge base.
Changing hospital culture: the role of an acute palliative care unit
Authors: Paterson Fiona , Buchanan Deans , MacIvor Frances , Lundie Susan , Levack Pamela , Baker Lee
Published: March 2012

Objective

To create a culture in an acute hospital where palliative care is more understood. At a strategic level hospitals accept the need to provide palliative care which is integrated with other hospital activity. It is however, often difficult at ward level to achieve this, especially in addition to ‘active’ medical treatment. Our advisory palliative care service began in 1998. We now report the benefits of a pilot (2009–10) Acute Palliative Care Unit (APCU) which has now achieved NHS funding. Pilot Acute Palliative Care Unit: Three single rooms in an acute surgical ward •7.6 seconded nurses some with Specialist Palliative Care experience •1.0 Consultant for the APCU and Ninewells advisory service •0.6 Consultant to run an education programme.

Admissions

Patients seen by the advisory service with the most complex symptoms or needs.

Data

Prospective collection: daily ESAS and distress scores; percentage of patients seeing appropriate disciplines within 2 working days; family meeting; discharge outcome; satisfaction (patient, family and staff).

Results

100 patients were admitted in the first 11 months. Pain was reduced from a median of 7 (IQR 5–10) on admission to 3.5 (IQR 1–5) within 48 h; distress from 7 (IQR 1–10) to 0 (IQR 0–5) within 48 h. There was no significant increase in any symptom (paired t test or Wilcoxon Matched-Pairs Signed Ranks Test). Median length of stay was 5 days (IQR 3–10) and mortality (23%) was low for a palliative care setting. 77% of patients were discharged directly from the unit: 32% home; 26% hospice or community hospital; and 19% to their original ward for active treatment or further consideration of active treatment.

Discussion

Seeing specialist palliative care practiced effectively in an acute surgical ward initially intrigued medical and nursing staff but it also encouraged an understanding of each others' disciplines and promoted collaborative working.
A report on physiotherapy services for children and young people
Authors: Davies Joanna , Miller Michael
Published: March 2012

Introduction

There is a recognised difference in the centralised children's services compared with the more localised adult services for those with neuromuscular diseases. At the young people's unit at Martin House transition is a difficult time with uncertainties about the availability and working practices of physiotherapy services for adults. With funding from the DoH as part of the £30million the physiotherapy services in Yorkshire and Humber were reviewed.

Method

Contacts were made from a number of sources, starting with known children's services and an email questionnaire was sent. There was a small circulation of questions to users of the service.

Results

There was excellent completion circulated after contact had been established by the researcher. • The paediatric service in the region is well coordinated with close links with respective neuromuscular teams. • The challenge of identifying the different adult services highlighted the possible difficulties faced by people with a neuromuscular condition. • There is variety in the provision and accessibility of adult services offered around the region. • There is a limited review/monitoring service in place for adults with only 42% of teams offering this. • 54% of adult teams are unable to provide on-going physiotherapy. They are usually goal- orientated and based on self-management which isn't always appropriate in a progressive deteriorating condition. • The lack of access to specialist physiotherapy in adult services is a problem for both community and hospice physiotherapists and patients. • Provision of Hydrotherapy is an on-going issue.

Recommendations

• Consideration of a review/monitoring service for adults is needed. • Consideration of a transition service is needed. • There is a need to provide more access to specialist neuromuscular physiotherapists in adult services. • A maintained and accessible database of adult services for these patients should be made available to assist referrers.
Lessons from liaison: achieving preferred place of death for patients in a tertiary cancer centre
Authors: Coackley Ann Griffiths Alison , Noble Agnes , Howarth Susan
Published: March 2012

Background

The National Institute of Clinical Excellence emphasise that, ‘People with incurable illness should be able to make choices about care at the end of their life and this includes a choice about where they die.’ The logistics of arranging a rapid discharge for a dying patient from a tertiary cancer centre serving over 2 million population can seem to be an overwhelming challenge for staff. A multi professional working group based at Clatterbridge Centre for Oncology developed and implemented a Rapid Discharge Pathway following close liaison with services and personnel across the Network.

Aims of Study

To evaluate the effectiveness of the Rapid Discharge Pathway for the Dying Patient o To resolve emerging challenges associated with emergency discharges at the end of life to a large geographical area.

Method

A retrospective audit was completed over a pilot period reviewing medical case notes and pathway documentation.

Discussion

Seven patients requested a rapid discharge at end of life with an age range of 23–71 years. Six were successful and one was cancelled due to a rapid deterioration in condition. The study demonstrated the effectiveness of a procedure to ensure discharge medicines were rapidly available and appropriate equipment was in place. There was good communication with families and other healthcare professionals. Challenges included ambulance availability and out of hours discharges. Innovative ways to resolve difficulties are described and the possibility of escorted discharges is explored.
Acute palliative care in the assessment areas
Authors: Raj Julie , Parr Paula , Hugel Heino , Maher Bridget
Published: March 2012

Aim

To describe the benefits of early review by the Hospital Palliative Care Team (HPCT) for acutely admitted palliative patients.

Background

Over an 18 month period, the HPCT at a large University Hospital have attended the Medical Admissions Unit on a daily basis to pick up known patients and new referrals to the service, in order to provide early symptom control advice, to advise on appropriate treatment plans, and to begin early discharge planning for potentially complex patients. They have attended post-take ward rounds and introduced targeted palliative care teaching sessions within the Acute Assessment Areas. An electronic flagging system to alert both the admitting team and the HPCT of a patient's palliative status has also been trialled.

Methods

A retrospective audit of a 1 month period prior to implementation of this service was compared to the results of a similar audit performed 18 months following implementation.

Results

Prior to implementation, only 5% of patients referred to the team were identified in the Assessment Areas. The median total length of stay was 10 days, and on average patients were referred on day 5, half way through their admission. Following implementation, on average 25% of all referrals came from the assessment wards, all of whom were seen within 24 h of admission. Total new referrals to the team have increased by over 50%, suggesting the intervention helped to identify patients who would otherwise not have been referred. (Graphical representation of these results).

Conclusion

The service is felt to be of benefit by both the staff in the Assessment Areas and the HPCT, improving early access to services and advice for palliative patients, and improving clinical relationships. Further work is on-going to quantify any improvement in discharge outcomes for patients, including place of discharge and average length of hospital stay.
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

Background

COPD 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.

Method

A 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.

Conclusion

There 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

Background

Palliative 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.

Objective

Identify 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.

Results

GP 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 Aims

Too 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

Background

Children'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).

Methods

A 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).

Findings

The 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 Recommendations

This 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

Background

Acorns 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/Actions

The 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

Background

Chronic obstructive pulmonary disease (COPD) is a progressive and life-limiting condition. Most patients die in hospital.

Aims

This 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.

Methods

Medical 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.

Results

28 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).

Conclusion

Poor 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

Background

The 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.

Aim

To audit physicians' understanding of palliative care needs and engagement with palliative care services in HF.

Methods

Three 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.

Conclusion

Physicians 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

Background

Two 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.

Method

Fourty-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.

Results

In 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.

Conclusion

Many 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

Background

High 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.

Aim

The 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.

Method

Planning 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.

Conclusion

Details 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

Background

We 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.

Aims

to devise and deliver a 3 day programme on palliative care, particularly focusing on attitudes towards medical interventions at the end of life.

Method

Small 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.

Results

Participants 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.

Conclusion

The 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.
Accentuate the positive – creative writing providing spiritual support for hospice patients
Authors: Scriven Lucy
Published: March 2012

Accentuate the positive is an ongoing creative writing project initiated as a response to patients facing challenging issues relating to self-worth as a result of living with a life threatening illness. Patients are offered a quiet private space for one-to-one discussion with the creative therapist in which to explore and identify their thoughts and feelings regarding, spirituality, the impact of their illness on communication, relationships and notions of ‘self’. Common themes arising in these discussions centre around the erosion of autonomy, the changes in personal roles and family dynamics, anger and frustration over the loss of independence and the increase in dependency on others. The role of the creative therapist is to listen and support the patient expressing issues and emotions, and can, with the agreement of the patient, engage the wider multi-professional team with any clinical concerns that may arise during the session. Patients are then invited to identify and connect with positive attributes, acknowledge existing abilities, and affirm strengths and ways of coping. This can sometimes be a difficult process for patients experiencing low mood and anxiety. In these circumstances, the creative therapist may offer observations and reflections that help to establish and list positives on behalf of the patient to get the ball rolling. With a list of positives identified, the patient and the creative therapist may then work together to create a piece of writing celebrating and affirming; what the patient can still do for themselves, their attributes and abilities, important relationships, and what they hold dear. Patients are then encouraged to consider sharing the work produced with fellow patients and families. Patient feedback on the project has been very positive and that the experience has been a valuable opportunity in promoting good communication, and an increase in feelings of self-worth and self-esteem through creative expression.
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

Background

In 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.

Aim

To 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?

Methods

Searches 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.

Results

Sixty-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.

Conclusions

The 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

Background

Although 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.

Aims

The 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.

Method

Patients 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.

Results

36 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.

Conclusion

The 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.
Communication barriers experienced by paediatric palliative care staff when interacting with children, young people and families: a literature review
Authors: Patel Reena , Coad Jane , Murray Sarah
Published: March 2012

Background

A recent Department of Health funded evaluation of West Midlands Children and Young People's Palliative Care services disclosed that staff reported concerns about their ability to effectively communicate with children and families. Few studies have fully explored the problem of communication barriers in paediatric palliative care, particularly the detrimental effects of poor interaction between staff and families on children's health and well-being. A literature review was undertaken to expand the current body of knowledge about staff to patient communications in paediatric palliative care.

Aim

First, to explore the literature surrounding communication barriers experienced by palliative care staff, children and families and second, to identify directions for future research.

Methods

Combinations of selected key words were systematically applied to identify research on communication barriers experienced by paediatric palliative care staff and families. Articles meeting the inclusion criteria were read and descriptively summarised using a data extraction sheet. A narrative synthesis was conducted by examining commonly reported communication issues which were then condensed into five overarching themes.

Results

Limited research is available that explores the perspectives of staff, children and their families about perceived communication barriers in paediatric palliative care services. However, the primary issues to emerge from available literature included perceived lack of staff knowledge about emotional support, style in which staff conveyed diagnostic information, the constant change of professionals interacting with families and the lack of formal training and guidelines for staff to meet the needs of children and families with additional complex care needs.

Conclusion

There is an under-representation of research in communicating with children, young people and families in palliative care. Improvements in staff education regarding communication skills and individualised palliative care plans for children and families may help to overcome some of the exacerbating communication barriers currently obstructing the attainment of high quality paediatric palliative care.
Priorities for global research into children's palliative care: a Delphi study
Authors: Downing Julia , Marston Joan
Published: March 2012

Objectives

There is a need to develop an evidence base for children's palliative care globally. A review of children's palliative care in SSA highlighted a lack of evidence which can be seen globally. There is a need for evidence, guidelines on best practice and opportunities for collaboration. The research needs are great therefore the International Children's Palliative Care Network (ICPCN) is undertaking a Delphi study to identify the priorities for global research into children's palliative care which will have the greatest impact on quality of life.

Method

Following a review of the literature, a research protocol was developed and submitted for IRB approval. The study is in four phases: Phase 1 – identifying a base line list of priority areas for research into children's palliative care: Phase 2 – identifying a list of participants from around the world; Phase 3 – the Delphi process where participants will rate areas for research in terms of priority, these will be reviewed followed by further rounds of Delphi as appropriate. Phase 4 – analysis of the ratings and finalisation of the priorities for Global research.

Results

The Delphi process is currently underway and will be completed by the end of 2011. Results will be shared, along with the implications for practice.

Conclusion

The priorities for global research into children's palliative care will inform a research agenda for ICPCN and its partners, in particular those areas which will benefit from regional and international collaboration. It is also hoped that the results will be used in advocating for funds for research into children's palliative care.
Specialised palliative care in a rural area
Authors: Papke Jens
Published: March 2012

Aim

In the last two decades in Germany some different projects for specialised outpatient palliative care (SAPV) were developed. Since 2007 it is benefit of health insurances; so the number of providers is growing. The main problem is heterogenity of structures and coverage of rural districts. The authors developed an independent palliative care network for provision of rural areas in Saxony, Germany.

Methods

Prospective documentation and assessment of achievements of the palliative care network from its beginning as accompanying research.

Results

In the last year (7 January 2010 to 7 January 2011) Home Care Sachsen cared for 310 patients (pts); 234 pts. died. 192 pts (82%) could die at home. Average age was 69 years (between 32 and 91 years); 52% of pts were male.

Conclusion

Because of lower density of pts, longer distances and poorer level of infrastructure provision of SAPV in rural regions is difficult. The construct of a multi-professional network is a useful way to provide specialised palliative care in an outpatient setting. The high rate of home deaths (82%) is a sign of good quality in outpatient palliative caring. Structure details of the palliative care network will be presented.
Using photovoice to study the experience of living with and beyond the diagnosis of a poor prognostic cancer
Authors: Balmer Claire , Griffiths Frances , Dunn Janet
Published: March 2012

Background

Photovoice is a novel research method which allows the communication of experience through participant-produced photographs. It has the potential to ‘dig deeper’ by offering participants another way of expressing aspects of life that may be difficult to put into words. It also allows researchers access to participants' homes, workplaces and social events. It is firmly rooted in the concept of ‘participation’ as participants have control of their own data and can choose when they produce it and how they share it. So far, it has been used successfully in other areas of health and social research and tentatively in cancer research.

Aims

The overall aim of the presented study was to explore the experience of living with and beyond cancer from the perspective of people diagnosed with a ‘poor prognostic’ cancer in a society that celebrates survival.

Method

Participants who have received a diagnosis of and treatment for a variety of ‘poor prognostic’ cancers (defined by site or stage) have been recruited nationally. Data have been gathered via interviews and participant-produced photographs. Participatory workshops have also been held in which participants have had an opportunity to be involved with the analysis of the photographs.

Results

Analysis is still underway but consistent and interesting themes are emerging. The photographs are offering very strong and succinct portrayals of living with a poor prognostic cancer. Full results will be available to present at the conference.

Conclusion

This study should provide much needed indepth information for professionals and policy-makers on the meaning of cancer for those with a likely limited survival and the positive and negative aspects of living with such a diagnosis.