bluuebunny/crossref_metadata_2025 huggingface dataset:
DEVELOPMENT OF A HOSPICE RESEARCH STRATEGY THROUGH ORGANISATIONAL CONSENSUS
Authors: Reed Liz , Todd Jennifer
Published: February 2014

Background

A strategic approach to the development of a portfolio of research gives direction and enables an organisation to plan, fund and conduct research systematically. At Princess Alice Hospice, a strategic approach to research development across the organisation was tailored from the 5 year strategy, as a focus to improve the quality of the palliative and end of life care provided locally, as well as contributing to the wider evidence base.

Aims

Identify gaps in palliative and end of life care evidence Develop an research strategy in line with organisational strategy.

Methods

A gap analysis of evidence in palliative and end of life care was undertaken though a review of relevant literature, focussing on the key areas previously identified through the organisational strategy. The analysis was then circulated to managers from different disciplines, both clinical and non-clinical, along with an open invitation to attend a research workshop. The workshop was used to facilitate consensus decision making in order to prioritise the focus of research over the next 2–3 years. The outcome of the workshop and key areas identified for research were then conveyed to the user group.

Results

The workshop was attended by 17 staff members with good multiprofessional representation. Priorities identified in order were: partners and families; non-malignant disease and health promotion. Workshop discussion highlighted compassion and dignity as additional research areas, both topical and relevant across the organisation, and they were subsequently added to the priorities.

Conclusions

Undertaking a gap analysis, with an overview of current evidence in palliative and end of life care research, alongside the 5 year strategy, provided focus for our organisational research priorities. A multiprofessional consensus approach allowed diversity and representation which translates into a richer decision making process as well as interest and engagement throughout disciplines in future research activity at the Hospice.
MUSIC AS A HEALTH PROMOTION AGENT IN PALLIATIVE CARE: THE ST CHRISTOPHER'S COMMUNITY CHOIR
Authors: Tsiris Giorgos , Dives Tamsin , San Mick
Published: February 2014

Traditionally, health promotion has focused on illness prevention, and is addressed to people who are ‘fit’ and ‘well’. In recent years however, there has been an increased interest in health promotion's relevance within the palliative care field. Although death cannot be prevented, health promotion initiatives can provide education and social support regarding death and dying, and help change death-denying health policies and attitudes. These initiatives gradually become a key aspect of hospices' work, and a new emerging area for music and other arts practitioners.

Drawing from the example of St Christopher's Community Choir (and its Band), this presentation focuses on music's role as a health promotion agent in palliative and bereavement care. Run by two music therapists, the choir was founded in 2011 as part of St Christopher's wider death education and social initiatives; today it has more than 80 members including people from the local community, patients, families, bereaved people, staff and volunteers. Through brief case studies, different people's pathways and social stories within and beyond the choir are explored. This presentation shows how music's power to build community can become a key element within health promotion initiatives in palliative and bereavement care, while new potential prospects for music therapists working in the field are outlined.
UNDERTAKING A BEREAVED FAMILY SURVEY IN A LARGE TEACHING HOSPITAL
Authors: Iwaniszak Claire , Kite Suzanne , Rees Elizabeth , Henry Karen , Gibson Kathryn , Hicks Fiona , Stothard Christopher
Published: February 2014

Aim

To give relatives the opportunity to provide feedback on their experience of their relatives care received in the last days/hours of their lives in an acute hospital.

Background

Results from the National Views of Informal Carers Evaluation of Services (VOICES) survey (DH, 2012) was informative at PCT level but did not provide feedback on individual organisation. Leeds Teaching Hospitals Trust (LTHT) adapted a bereaved family survey (Worcestershire Acute Hospital NHS Trust, 2012) for feedback on the quality of end of life care and communication.

Method

627 surveys given out over 10 weeks (March to May 2013) to the bereaved relative/carer via the bereavement liaison office.

Results

Response rate 23% (146/627). Majority of responses from bereaved daughters (40%) of older adults. Results indicated that ward staff are delivering excellent or good care for the followings aspects; communication (Excellent 45%, Good 28%); respect and dignity (Excellent 55%, Good 26%) and emotional support (Excellent 46%, Good 30%). An adapted version of Burnard (1991) content analysis was used to establish themes from the comments. Emerging themes highlighted issues with hospital/ward facilities for relatives and lack of understanding regarding caring for patients with dementia. Overall the comments were mainly positive (70% positive versus 30% negative) regarding care their relatives received.

Conclusion

This Bereaved Family Survey has provided valuable insight into where the care we provide is of high quality, and where we need to improve. Work is required to: understand how we can involve patients more in decision-making; improve facilities for families, and establish links with other work in development, such as improving care for patients with dementia. Timing of the survey needs to be reconsidered to gain a more representative population of bereaved relatives.
WHEN SHOULD WE TELL THE CHILDREN?
Authors: Foulkes Margaret , Hampton-Matthews Julian , Coackley Alison
Published: February 2014

Background

In recent years, there has been growing recognition that the needs of dependent children should be considered when dealing with a parent with a life-threatening illness, Much patient distress can be associated with worries about the children and also, many children welcome the opportunity to talk with parents or professionals about the illness, treatments, survival and coping strategies. Many Hospices/Palliative Care Units in the UK provide support for dependent children, however, there is very little face-to-face support at diagnosis or subsequent care, in the acute setting.

Aim

To provide an individualised service for families and children, depending on age, stage of development, family values, patterns and culture, from diagnosis to bereavement.

Method

During the past five years, this tertiary Cancer Centre has provided a family service for patients with children. There is a weekly specialist service where patients can discuss the needs of their children or can access individual support for the children themselves. Parents are helped to discuss issues with their children and provided with resources such as leaflets, books, internet sites, discussion of memory boxes and DVDs. Some children may prefer to talk to a professional on their own or with a family member/friend. They are encouraged to ask questions about what is happening, look at options for support and have a point of contact if they wish to return at any future date.

Results

Patients and their families have benefitted from support in all stages of their cancer journey. Education and advice has been available for generalist staff and support has been augmented by the Specialist Palliative Care Team. A wide range of resources for children and their relatives are available in the Unit.
THE CHALLENGES OF PROVIDING A CARERS' ASSESSMENT FOR PALLIATIVE CARE PATIENTS IN A TERTIARY CANCER CENTRE
Authors: Hampton - Matthews Julian , Coackley Alison , Noble Agnes , Griffiths Ann , Foulkes Margaret , Howarth Susan
Published: February 2014

Background

The author works in a tertiary centre in the UK, caring for over 7,000 new patients per year. Carers play a central role in providing support to patients. However, many carers do not experience a cohesive integrated system of social support. Optimal input for carers will depend on a comprehensive assessment of the situation and their needs.

Aim

To develop an assessment tool that can be used by all health care professionals to assess the carers' needs and provide appropriate intervention to support the carers.

Method

A multi-professional group was set up to establish the baseline needs of carers. The assessment and documentation of carers' concerns and needs was evaluated using the documentation recorded on the Trust's electronic system. The Cancer Centre joined a major research project untaken by a local university and another NHS Trust to develop an assessment tool for carers who care for palliative patients. Staff took part in an on-line questionnaire to prioritise the issues they feel result in an increase in carer stress which could affect their ability to provide care.

Results

The research showed that carers' concerns and needs were not being formally assessed. From the information collated a draft Carers' Needs Assessment Thermometer was produced and piloted to carers. The evaluation from carers and health care professionals who have used this tool will help finalise the tool which can be used for carers.

Recommendations

Carers' Needs Assessment Thermometer will be used at the Cancer Centre to assess the needs of carers supporting palliative care patients. The tool will be used in conjunction with a carers' directory which was also developed at the Cancer Centre, which gives information on advocacy support, carers' allowance, national support organisations and supported is available in the carer's area.
AND WHAT IF THERE IS NO ADVANCE CARE PLANNING? A REVIEW OF THE LITERATURE IN SHARED DECISION MAKING WITH FAMILY AS PROXY IN DYING HOSPITAL PATIENTS
Authors: Khodabukus Andrew F , Mason Stephen , Ellershaw John
Published: February 2014

Background

Advance care planning (ACP) is an example of Shared Decision Making (SDM). Of particular concern in palliative care is the significance of both family and non-family relationships and the patient's social environment. Together, these influence the patients decisions and can significantly impact the direction of care. Proxies can be all that healthcare professionals (HCP) have to guide them in a patient with insufficient capacity or where (ACP) discussions have not happened. The place of SDM outside of the classical HCP-individual patient consultation is being increasingly explored to address these additional factors behind decision-making.

Aims

To appraise and evaluate the literature on SDM with family as proxy in dying adult patients.

Methods

A literature search was done using MEDLINE, EMBASE, CINAHL and SDM internet resources up to 7th December 2012. Studies were identified using inclusion & exclusion criteria and study quality appraised using Popay et al's “Rationale and Standards for the Systematic Review of Qualitative Literature in Health Care”. Summary themes were then identified using content analysis.

Results

Fifteen research studies fulfilled inclusion criteria. Nine predominantly researched family experience and six the HCPs experience. There was a paucity of studies from the UK and non-intensive care wards and no studies met Popay's standards. Themes that arose from these studies included the disagreement on what constituted SDM in this context, difficulty of conversations about dying and family and HCP reported burden on families who had been involved in decisions.

Conclusions

The findings are similar to studies examining difficulties in communication about a dying patient. There is no consensus on what decisions can be shared by families and this will differ between different healthcare settings, cultural and legal systems. Therefore there is insufficient evidence in the literature to show how we can incorporate SDM with family as proxy in dying patients into clinical practice.
WHO RESPONDS TO A BEREAVED FAMILY SURVEY ABOUT ACUTE HOSPITAL CARE AT THE END OF LIFE?
Authors: Iwaniszak Claire , Kite Suzanne , Rees Elizabeth , Henry Karen , Hicks Fiona , Gibson Kathryn , Stothard Christopher
Published: February 2014

Aim

To explore who responded to the Leeds Teaching Hospitals Trust (LTHT) bereaved family survey.

Background

The LTHT Specialist Palliative Care Team (SPCT) locally adapted a bereavement survey for families (Worcestershire Acute Hospital NHS Trust, 2012). This was developed to give bereaved relatives the opportunity to provide feedback on their experience of the care their relative received at the end of life in the acute setting. The LTHT SPCT Bereaved Carers Service User (BCSU) group contributed to the design of the survey at the outset.

Method

Over a 10 week period, March to May 2013, the survey was given to bereaved relatives of adult patients when they collected medical cause of death certificates from the bereavement office. Patients who died in A&E were excluded.

Results

There were 146 respondents (response rate 23%).Trends identified from the demographics were that respondents tended to be from children of the deceased (son 23%, daughter 40%) and most responses came from older peoples' services (27%). The most prevalent age of death was 86–90. There was a low response rate from oncology wards (1%). Results were presented to the BCSU group.

Conclusion

The highest response was from daughters of older adults. Further exploration is needed into the low response rate from oncology, and spouses of the deceased. The timing of the survey may have influenced the group of respondents. It may have been too early on in their bereavement. Delaying the time that the survey is sent to bereaved relatives/carers may help increase the response rate. Opinions from the BCSU group and experience from other hospital trusts will be considered to inform changes to the next survey to gain feedback from a more representative population and improve the care patients receive at the end of life.
NUTRITIONAL ASSESSMENT AND MANAGEMENT — AN AUDIT OF CURRENT PRACTICE
Authors: Longford Emma , Powell Paula , Horlick Clare , Kendall Margaret , Royles Elen , Hamill Elaine , Cliff Catherine , Young Alison
Published: February 2014

Background

Undernutrition affects up to 97% of patients with cancer and is strongly associated with poor outcome. Eating is an important quality-of-life issue with many social activities centring on dining. Assessment of patients' nutritional status and appropriate support is fundamental to palliative care at all stages. An audit was undertaken of current practice with regards to nutritional assessment and management within Merseyside & Cheshire Cancer Network (MCCN), the results of which are presented.

Method

The audit consisted of three parts a) telephone survey of nutrition resources within specialist palliative care services (SPCS), b) web-based survey determining healthcare professionals (HCPs) perceptions of practice c) supplementary web-based survey focusing on key issues.

Results

The majority of SPCS inpatient units do not have a nutrition policy or lead. None of the SPCS units had access to educational information regarding nutrition in palliative care.

110 HCPs completed the initial survey, 60 HCP's completed the follow-up survey. 90% routinely discuss nutrition with their patients. The majority (64%) do not use any form of nutritional screening assessment; however within most MDT's (69%) there is access to specialist nutritional advice. Within all hospital settings there is a well adhered to protected mealtime policy, however only 58% of those working in SPCS inpatient units are aware of a protected mealtime policy. 64% of respondents advise prescription of oral nutritional supplements regularly. All respondents suggest prescription of dexamethasone for appetite stimulation ‘sometimes’ or ‘often’, whilst only 59% suggest prescription of megestrol ‘sometimes’. 44% of respondents had received no nutritional training.

Conclusions

There is paucity of nutritional guidance within SPCS, although in most cases there is access to appropriate specialist advice. Training needs to be improved to increase confidence in management of nutritional issues. MCCN guidelines for assessment and provision nutritional care have subsequently been published.
A SERVICE EVALUATION OF A SPECIALIST COMMUNITY PALLIATIVE CARE OCCUPATIONAL THERAPY (OT) SERVICE
Authors: Phipps Kerrie , Cooper Jan
Published: February 2014

Background

Palliative care OT is an integral part of comprehensive end of life care, maximising patients' independence and maintaining independent living. However studies have highlighted that professionals often have an inadequate understanding of OT interventions, and as a result patients are not referred. This has led to a concern that some patients, who are experiencing functional difficulties in line with disease progression, may not receive the OT support they require.

Aim

This project took place in 2012 and was a service evaluation of an existing Specialist Community Palliative Care OT Service. It aimed to evaluate the service from a professional users' perspective to identify areas of good practice and those requiring further development/improvement.

Methods

Two data collection methods were selected to collect evaluative data:

An online questionnaire to 100 core Gold Standard Framework (GSF) professional group members who had referred to the service in the past 12 months.

Two focus groups of GSF group members to expand on the emergent themes identified in the analysis of the questionnaire results.

Results

58 out of 100 (58%) online questionnaires were completed and a total of 26 professionals attended the focus group meetings.

Results of the evaluation demonstratedSpecialist Community Palliative Care OT has a significant impact on: maintaining patient's independence; comfort, and quality of life.

Professionals associated the service with supporting patients' preferred place of care; improved patient outcomes, and valued it in terms of its ability to support them in addressing the needs of their patients.

Factors in ensuring patients receive timely and appropriate OT interventions were: clear communication pathways and education and information strategies regarding the role of the community palliative care OT

Conclusion

The results of this service evaluation demonstrate the importance/contribution of specialist palliative care OT in comprehensive end of life care. However the results also demonstrated the need for education of the role of OT in palliative care, ensuring all patients receive this specialist support.
YOUR ONE PERCENT?
Authors: Bunce Claire , Edwards James
Published: February 2014

Aims and Objectives

To investigate if readily identifiable patients with a life expectancy of less than twelve months are being identified at the Practice to allow them to gain the benefits of palliative care on the Gold Standards Framework (GSF).

Content of Presentation

Objectives are: to explain what the audit involved, use of Karnofsky Performance Scale (KPS), the results and implications for practice.

Relevance/Impact

The Living and Dying Well Campaign aims to encourage General Practitioners to recognise the predictable deaths in the 1% of their patients who will die every year. This allows patients to make informed decisions, GPs to improve co-ordination and delivery of care and reduces the burden on acute services.

Outcomes

Only 25% of the sample were on the GSF register, another 43% were eligible based on KPS and clinical judgement. The Practice is not identifying the 1% of its patients for inclusion on the GSF Register and could consider utilising the strategies suggested to reach this threshold.

Discussion

Use of the Karnofsky Performance Scale to aid GPs in deciding who to list on the register by including all patients with a KPS <50% and having disease specific palliative care meetings could help to identify the predictable deaths at each GP Surgery.
HOW DO CLINICAL STAFF PERCEIVE THE LIVERPOOL CARE PATHWAY?
Authors: Srivastava Leena , Ting Ruth ,   Members of LCP working group
Published: February 2014

Background

Over the last year, concerns have been raised about the care of patients on the Liverpool Care Pathway (LCP). In July 2013 an Independent Review recommended that the LCP should be phased out and replaced by an individual end of life care plan. It is crucial we have an understanding of how clinical staff perceive the LCP to develop robust training around end of life care.

Aim

To evaluate clinical staff's perceptions regarding the LCP.

Method

Two wards in Gateshead Health NHS Foundation Trust were randomly chosen. In June 2013, all their staff were invited to complete an anonymous survey.

Results

General Views

47% of clinical staff responded. 57% thought the LCP should only be used in the last 48 hours of life. 94% felt the LCP ensures patients are treated with respect. Only 1 staff member felt that the LCP speeds up dying.

Care whilst on LCP

71% of clinical staff felt that they would consider treatments depending on the clinical situation. 80% would regularly monitor patients with 94% checking for signs of improvement. 86% would stop the LCP if the patient recovered.

Limitations

Our results are based on less than 50% response to the survey and may therefore not represent the full views of all staff.

Discussion

57% of staff can recognise when to commence the LCP. Once in use, a majority of staff are able to decide on treatments and monitoring. Confusion can however arise if all are not clear of the application of the LCP. This can lead to some of the issues raised in the Independent Review.

Conclusion

This survey has shown that clinical staff know when and how to apply the LCP. End of life training needs to continue to support staff in this.
COMPARING THE ACCURACY OF AN ONLINE PROGNOSTICATION TOOL WITH CLINICAL TEAM PROGNOSTICATION
Authors: Forrest Sarah , Holmes Ann , Lew Eva
Published: February 2014

Background

Medical Teams regularly formulate a prognosis for patients to allow appropriate plans to be made and to help patients and families prepare for end of life.

Research shows that clinicians are over-optimistic in prognosis formulation to a degree of up to 5 times the actual time to death.1

The ‘Prognosis in Palliative Care Study’ (PiPS) online prognostication tool allows clinicians to input data and receive a prognosis in days, weeks or months, and has been found to be at least as accurate when compared with physician estimate alone.2 3

Aim

To compare the PiPS-A online prognostication tool with Clinician estimate of prognosis and the actual time to death for all advanced cancer patients admitted to the IPU over three months.

To assess whether using PiPS-A improves the accuracy of prognostication in our patient group compared with the team's estimate, and whether using it adds to our practice.

Results

33 PiPs-A forms were completed on 32 patients over 3 months from April–July 2012.

Clinician prognostications were at least as accurate as PiPs-A supported prognostication. For patients who had an actual prognosis of weeks or months, the clinician (54%/55%)was markedly more accurate than the PiPs-A (30%/31%). PiPs-A was as good as a clinician in predicting days (80% vs 78%).

Discussion

Doctors find prognostication difficult, yet it is central to assessment and management of patient and in planning for changing care needs. PiPs-A may be useful in prognostication of patients in whom prognosis may be short and the efficacy of interventional treatments is questioned.

Junior doctors have little experience of formulating an accurate prognosis; PiPS has a role as a teaching aid for juniors to enable them to develop this skill.
THE INSERTION OF LONG-TERM PERITONEAL DRAINS IN PATIENTS WITH RECURRENT MALIGNANT ASCITES
Authors: Brown Anna , Drake Alexandra , Gibson Matthew , Bhattacharyya Madhumita , Clarke Lisa , Mckeogh Maeve
Published: February 2014

Background

Recurrent malignant ascites poses a significant burden to oncology patients approaching the final phase of life. This is, in part, due to recurrent hospital admissions for intermittent paracentesis. In March 2012, the National Institute for Clinical Excellence approved the insertion of indwelling, long-term, peritoneal drains for recurrent malignant ascites. Guidance concluded clinical efficacy, low complication rates, cost efficiency (estimated saving £679 per patient) and improvement in patient quality of life.

Aims

The Royal Berkshire Hospital had no long-term drain provision. The intention was to implement a trust-wide protocol for the insertion of long-term peritoneal drains in patients with recurrent malignant ascites.

Methods

A pilot group was established with members from Oncology, Palliative Care and Radiology. A protocol was developed, presented and accepted at Clinical Governance by all relevant departments. The protocol was instituted via the trust intranet. Education regarding the process and the practicalities of the drains was provided at departmental level. Data was collected on patient experience.

Results

Since introduction, eight months ago, twelve long-term drains have been placed. Malignant sites include ovarian (5), endometrial (3), urological (2), breast (1) and colorectal (1). Average drain duration is 37.5 days (range 2–215 to date). Placement of long-term drains enabled two patients to consider hospice care and two patients to die at home in their preferred place of care. Seven patients remain at home with ongoing community management of their ascites. Complication rates have been low with no insertion complications. In one case, two drains had to be inserted due to pocketed ascites. A further case displayed localised cellulitis at the insertion site but was not associated with systemic illness.

Conclusion

The implementation of a trust-wide protocol has allowed the insertion of twelve long-term drains with optimisation of patient's quality of life, maximised time out of hospital and an estimated trust saving of £8,148.
ANTICIPATORY PRESCRIBING AT THE END-OF-LIFE IN SOUTH EDINBURGH CARE HOMES
Authors: Finucane Anne M. , McArthur Dorothy , Gardner Hilary , Murray Scott A.
Published: February 2014

Background

Common symptoms at the end-of-life include pain, breathlessness, anxiety, respiratory secretions, and nausea. National end-of-life care strategies advocate anticipatory prescribing to manage these symptoms, enhance patient care and reduce unnecessary hospital admissions. NHS Lothian palliative care guidelines have drawn on this advice and recommend that four classes of “as required” medicines are prescribed and available for all patients in the last days of life. These are analgesics, anxiolytics, and anti-secretory and anti-emetic medication.

Aims

This study explored the extent to which residents in eight South Edinburgh care homes had anticipatory medications prescribed prior to death.

Results

Data was collected as part of a larger project to improve palliative care in these care homes. Each care home was asked to provide data on anticipatory prescribing for the last ten residents who had died. Data on 77 residents was received, 71 of whom died in the care homes (6 died in hospital). Of the 71 who died in the care homes, 59% had some anticipatory planning medications in place: morphine for analgesia (52%); midazolam for anxiety and distress (38%); hyoscine butylbromide for respiratory secretions (21%); and levomepromazine or haloperidol for nausea (23%). Overall, 41% no anticipatory medications prescribed in the last days of life. Only 15% had prescriptions for all four medications.

Conclusions

Many care home residents do not have the recommended anticipatory medications in place in the last days of life and thus may experience inadequate symptom control. Barriers to anticipatory prescribing in care homes include difficulties diagnosing dying, lack of knowledge about the guidelines, costs concerns relating to wastage of medicines and barriers around individual prescribing systems and storage. Research that explores these issues is required. In the meantime, interventions that build the skills and confidence of care home staff to diagnose dying and facilitate such prescribing are recommended.
IMPROVING COMMUNICATION CONCERNING USE OF POTENTIALLY SEDATIVE INJECTABLE MEDICATIONS AT END OF LIFE
Authors: Richardson Kathryn , Hiscock Ruth , Midgley Corinna
Published: February 2014

Aims

To explore use of potentially sedative injectable medicines at end of life in a hospice inpatient population, and ensure good quality of communication surrounding the use of such drugs. A retrospective case notes audit of people who had recently died in the hospice was developed. Frequency and dose range of injectable sedatives used in the last week of life were noted, also range of symptoms recorded, documentation of intent for those medications. and that discussion with patient/family concerning intent/potentially sedating side effect had been achieved, with the plan of care agreed.

Results

46/50 notes were analysed (sequential deaths — 4 not found). 42 were on an end of life care pathway when they died. Use of medicines which could potentially sedate was high: medicines reviewed were midazolam, levomepromazine and phenobarbitone. Only 3 were on no such medication. 40/46 were receiving medicine via an infusion. Midazolam and levomepromazine median/mode doses were low. Intention was better documented than in a previous audit but there were clear gaps in documentation concerning discussion with patient, family and team. In the 5 for whom the intent was sedation there was good documentation concerning discussion with a senior doctor - but poor documentation of discussion with patient/family/team.

Conclusions

The audit identified improvement since intention/counselling had become part of syringe driver policy, but unclear patient, family and team engagement in the plan of care. A policy on use of potentially sedative medications has now been developed to better support good communication concerning such drugs. MDT teaching has engaged staff in the importance of such communication. Key recommendations for use of sedation in palliative care (based on the European Association for Palliative Care, 2007) are now included. The policy has been positively received by staff (feedback included in this review) and is now in use.
THE DEVELOPMENT OF AN ELECTRONIC REPORTING MECHANISM TO SUPPORT THE USE OF EPACCS IN CLINICAL PRACTICE
Authors: Henry Karen , Kite Suzanne , McDermott Sarah , Penn Naomi , Paul Westerman
Published: February 2014

Background

Leeds was one of the sites for the DH EPaCCS pilots 2009–11 (Ipsos-Mori 2011) and implementation across the city has been ongoing since 2011. Bespoke templates have been developed to collect patient information specified in the 1SB1580 standard from within existing clinical systems of the healthcare provider organisations to support the elicitation, recording and sharing of people's key preferences about their care.

Whilst implementing EPaCCS in Leeds it became apparent that reports could assist clinicians in identifying which patients might be suitable for EPaCCS, help streamline palliative care/GSF meetings and support organisational reporting requirements. The team therefore developed the reports outlined below.

Aims

Use electronic coding of patient information to develop reports to: highlight those patients with a palliative code in their record for consideration by clinicians for EPaCCS streamline palliative care/Gold Standard Framework meetings by focusing on patients preferences enable GP practices and healthcare organisations to meet their reporting requirements and monitor care outcomes.

Results

EPaCCS reports have been developed within the SystmOne clinical IT system populated by GP's, specialist palliative care and community nurses. Since clinicians started using the EPaCCS reports there has been a significant increase in the numbers of patients identified as having palliative care needs and who have subsequently been included on EPaCCS. Clinicians report that GSF/palliative care meetings are more streamlined and effective. Practices are also able to evidence QOF requirements of a palliative care register and meeting; similarly other healthcare organisations can meet their reporting requirements using EPaCCS.

Conclusions

The introduction of reports into the Leeds Systmone EPaCCS has been beneficial to patients and clinicians in terms of more patients being identified and highlighting gaps in preferences being recorded. and clinicians are enabled to be more productive and proactive in their decision making and reporting requirements.
DEVELOPING AN ELECTRONIC PALLIATIVE CARE COORDINATION SYSTEM (EPACCS) WITHIN A LARGE CITY WITH MULTIPLE CLINICAL IT SYSTEMS
Authors: Henry Karen , Sarah McDermott , Kite Suzanne , Penn Naomi , Westerman Paul
Published: February 2014

Background

The DH End of Life Care (EoLC) Strategy (2008) identified EPaCCS as an enabler of greater co-ordination of patient care through supporting the elicitation, recording and sharing of people's key preferences about their care and enabling these preferences to be met across a wide variety of teams and organisations. A variety of approaches to the design of EPaCCS have been adopted across England (Ipsos-Mori 2011). In Leeds the emphasis has been on hosting EPaCCS within the current clinical IT systems that span the city, in response to the stakeholder priorities of accessibility in clinical practice and minimal duplication of record entry.

Aim

To design and implement an EPaCCS IT solution that maintained clinical intuitiveness across a multitude of clinical IT systems ie ‘one click’ from the organisational clinical record.

Results

Three clinical IT systems predominate. SystmOne is the platform for 66% of GP's, community nursing, OOH's and the two hospices, and EMIS is predominantly used by the remaining GPs. The acute Trust had a myriad of systems currently being amalgamated into a single Clinical Portal. Bespoke templates have been developed with clinicians and implemented to collect the patient information specified in the 1SB1580 standard within the existing clinical systems of the healthcare provider organisations. Interoperability between the IT systems to permit sharing of the EoLC plan is being pursued via the Leeds Care Record which will facilitate sharing of information between different clinical systems and is the first of its kind in the country.

Conclusions

The “one click away” approach to EPaCCS is a challenging one, and a lengthy process. However, the benefits of supporting clinicians to build a record of patient preferences and wishes for end of life care within their own clinical system are now being realised.
IS THE SPECIALIST PALLIATIVE CARE MULTIDISCIPLINARY TEAM (MDT) ABLE TO PROVIDE MORE ACCURATE PROGNOSTICATION THAN NON-SPECIALIST MEDICAL PROFESSIONALS?
Authors: McManus William , Khodabukus Andrew , Hayle Catherine , Ahmad Fawad , Lewis-Jones Catherine
Published: February 2014

Background

Prognostic estimates are used to support decision-making in advance care planning. NICE Quality Standards (2011) advocate that ‘people approaching the end of life are identified in a timely way’. Estimations are often inaccurate, with non-specialist medical professionals being accurate only 20% of the time.1 2Prognostication scores exist to help inform estimations, but most medical professionals use a combination of personal experience, the patient's disease burden and momentum of functional decline.

Aim

To determine prognostic accuracy of a specialist palliative care multi-disciplinary team (MDT).

Methods

Prognostic estimates were recorded by a specialist palliative care MDT bi-weekly for hospice inpatients over a six month period. Patients were placed in to one of four prognostic categories: ‘last six months’, ‘last six weeks’, last two weeks', and ‘last 48 hours’. Data was collected retrospectively.

Results

182 prognostic estimates were recorded for 122 patients over six months. 96.8% of patients had a diagnosis of malignant disease. In the ‘last six months’ category, median survival was 42 days, with a prognostic accuracy of 48.6% (i.e. 48.6% of patients in this category died within six months and survived longer than six weeks). In the ‘last six weeks’ category, median survival was 21 days, with an accuracy of 43%. In the ‘last two weeks’ category, median survival was 8 days, with an accuracy of 50%. In the ‘last 48 hours’ category, median survival was 60 hours, with an accuracy of 52%.

Conclusions

The specialist palliative care MDT is more accurate at estimating prognosis than non-specialist medical professionals, with an average accuracy over all prognostic categories of 48.4%. Accuracy improves the closer the patient is to death. Overestimation of prognosis is the more common error, contrary to media reports that suggest medical professionals can underestimate prognosis and deny patients treatment towards the end of life.
AN AUDIT OF THE INITIATION, PRESCRIPTION AND ADMINISTRATION OF OPIOID ANALGESIA TO ADULT PALLIATIVE CANCER PATIENTS IN AN ACUTE HOSPITAL
Authors: Messam Kerry , Cooper Jan
Published: February 2014

Background

Despite a plethora of literature and multiple guidelines, uncontrolled cancer pain remains hugely burdensome to patients. To address inconsistencies and misunderstanding surrounding the use of opioid analgesia in clinical practice, the UK National Institute for Clinical Excellence (NICE 2012) recently introduced national guidance in the form of the opioid care pathway to assist Health Care Professionals with the initiation and titration of opioid analgesia for patients with palliative disease.

Aim

This audit measured current practice in the initiation, prescription and administration of opioids in adult cancer patients with palliative disease in an acute hospital setting. Data was collected retrospectively from patient records and prescription/administration charts, to ascertain whether standards on opioid treatment set by NICE (2012), the UK National Patient Safety Agency (2010), UK Nursing and Midwifery Council (2010), and local hospital standards were being achieved.

Results

86 sets of clinical records were retrieved between December 2011 and November 2012. Results demonstrated significant concerns regarding the administration of opioids and a high incidence in PRN prescribing alone, with only 45 patients commenced on regular opioid prescriptions. Of the fifteen audited standards, only a third demonstrated compliance +/-10%.

Conclusions

Despite intensive education, opioid initiation, prescription and administration in this group of palliative care patients was not consistent with published guidance and standards. Variations in clinical practice means that audit tools such as NICE (2012) should strongly encourage the recording of explicit exceptions to ensure accurate measurement of practice. Dissemination and collation of feedback is required to inform proposed recommendations, draft prescribing and administration guidance and a re-audit plan.
PROVISION OF END OF LIFE (EOL) CARE TO PATIENTS WITH HEART FAILURE (HF) IN AN ACUTE HOSPITAL TRUST
Authors: Bronnert Rosie , Clayton Louise , Verma Amit
Published: February 2014

Background

Patients with Heart Failure (HF) often have palliative care needs but access to appropriate palliative and end of life care is not always achieved. Following the appointment of a hospital HF specialist nurse and Palliative Medicine Consultant, re-evaluation of clinical need and links between palliative and HF services occurred.

Aims

To establish baseline documentation and provision of EoL care across the hospital trust for patients coded with a primary diagnosis of heart failure.

Results

In 2012, 217 patients died within the trust with a primary diagnosis of heart failure. 70/217 notes were reviewed.

39/70 had a diagnosis of LVSD. 12 had HF with Normal Ejection Fraction. 19 had a clinical diagnosis of HF. Death was expected in 65/70 patients.

Key findings were:

1. Preferences regarding place of death were discussed in 6/65 cases.

2. Specialist Palliative Care saw 1/70 patients

3. Anticipatory medications were prescribed for some or all of the common symptoms at EoL in 45/65 patients who were expected to die. 41/45 patients received some of these medications.

4. Decisions about Cardiopulmonary Resuscitation (CPR): In the expected death group, 62/65 patients had Do Not Attempt CPR (DNACPR) decisions considered and made. These decisions were discussed with the patient and family in 14/62 cases, the patient in 8/62 and family in 32/62 cases. In the 14/52 with no discussion, no statements existed to support whether/why discussions were deemed unnecessary/inappropriate.

Conclusions

Deaths from HF were usually anticipated and some provisions for EoL care were made. There is scope to improve discussions about preferences for care and involvement of Specialist Palliative Care.

Following this survey, measures to increase Palliative Care involvement with patients with HF include Palliative Medicine Consultant attendance at weekly HF multi-disciplinary meetings, education and clinic slots. Re-evaluation to assess the impact of these changes is planned.
COMMUNICATION WITH PRIMARY CARE REGARDING END OF LIFE CARE (EOLC) IN RESPIRATORY MEDICINE
Authors: Topley Katherine , Boland Alison , Edwards Annette , Clifton Ian
Published: February 2014

Background

Leeds Teaching Hospitals is a flagship trust for the EoLC strategy. We aim to improve the identification of these patients, and critically the communication with the patient, family and primary care.

Method

We conducted a retrospective review of clinic and discharge letters from patients who died as an in-patient or within 28 days of discharge. All were under the care of a respiratory physician during two 6 month periods in 2011 and 2012. Data is currently being collected for 6 months in 2013 and will be presented.

Results

Notes from a total of 186 and 181 patients, with a median age of 74.4 and 75.0 years, were reviewed in 2011 and 2012 respectively. Between 2011 and 2012 there was an increase in the proportion of deaths post-discharge from 22% to 29%. Documentation of a palliative intent to therapy was noted and communicated to primary care in 21% of in-patient deaths during both years. Documentation of palliative intent on the discharge summary for patients dying within 28 days of discharge fell from 78% to 40%.

Conclusions

The commonest causes of death for in-patients were pneumonia, lung malignancy and COPD. Those who died within 28 days of discharge had lung malignancy, other malignancy, ILD and COPD. The majority of patients with a documented communication about palliative intent had a diagnosis of thoracic malignancy. This reflects a more predictable disease trajectory and MDT decisions of “best supportive care”. Lack of confidence around predicting terminal disease in other respiratory diagnoses may account for the differences in rates of communication. In EoLC communication between professionals is a critical step in improving patient care and is particularly challenging in those with non-malignant disease.
AUDIT OF PRESCRIBING OF OPIATES AND SEDATIVES AT END OF LIFE IN A LARGE DISTRICT GENERAL HOSPITAL
Authors: Phillips Jacqueline , LeBon Beata , Jenkins Nicola
Published: February 2014

Background

The review of the LCP included concerns that opiates and sedatives had been used inappropriately at end of life. Although studies of prescribing for hospice inpatients concluded safe practice and lack of evidence that their use shortens survival, there is a lack of studies examining similar aspects of prescribing in hospital inpatients.

Aims

The aims of the audit were to:

Examine PRN and regular doses of opiates and sedatives in a sample of dying hospital inpatients

Examine the appropriateness of incremental increases of both drugs and their final doses

Compare the findings with the studies examining the above practice in hospice inpatients.

Methods

Thirty deaths and their LCP documentation were audited retrospectively. The following data were collated: length of time on the LCP, specialist palliative care involvement and PRN and regular opiate and sedative doses in the last 7 days of life and their incremental increases.

Results

The average use of the LCP was 2.9 days. Opioid analgesia was administered to 73.3% patients (46.7% receiving it via a CSCI.) The mean daily morphine equivalent doses (MDMED) for days 1, 2, 3, 4, 5, 6, 7 before death were 22.3, 21.8, 22.7, 23.7, 23.6, 22.5 and 20.8 mg respectively (range 2.5–80 mg over 24 hrs; one dose of 80 mg skewing the results).

Sedation (with midazolam, haloperidol or both) was provided in 70% cases (43% via a CSCI). In patients who received midazolam in a CSCI the mean daily doses on day 1, 2, 3, 4, 5, 6, 7 before death were 9.1, 8.3, 7.3, 11.3, 8.8, 5.0 and 3.8 mg respectively.

Conclusion

The audit concluded safe use of opiates and sedatives with incremental increases justified by the PRN doses and documented symptoms with no evidence of doses being unduly accelerated during the LCP use. The final doses of both drugs were lower than those reported by some hospice based audits.
CAN A PATIENT-HELD ASSESSMENT TOOL IMPROVE PAIN MANAGEMENT IN PALLIATIVE OUTPATIENTS AT A RURAL KENYAN HOSPITAL?
Authors: Besley Charlie
Published: February 2014

Background

Pain is a frequent and distressing symptom in palliative care patients worldwide. Careful assessment is the first vital step in attempts to relieve this suffering. Assessment tools form a useful adjunct to pain management, but whether they make a difference to the patient themselves is not known.

AIC Kijabe Hospital is a busy, rural, 'mission' hospital with an established Palliative Care Team.

Aim

The main objective of this study was to investigate whether the use of a pain assessment tool can make a difference to the patient's pain management.

Design

A quantitative experimental study methodology was employed, with pre- & post-intervention comparison. In the pre-intervention phase, pain was assessed at study entry and at two weeks, following ‘standard’ care at home; 49 patients were recruited for this phase. In the intervention phase pain assessments were made at entry, with follow-up assessment after introduction of a patient-held pain assessment tool taken home by each patient; 50 patients were recruited for this phase.

Analysis involved a comparison of baseline and two week pain scores between the pre- and post-intervention groups.

Results

The results demonstrated that the use of a patient-held pain assessment tool lead to an increase in the number of patients reaching satisfactory pain relief. In the pre-intervention group 30% patients reached satisfactory analgesia, whilst in the intervention group, success rate was 69%. Whilst this was only a pilot study and numbers were small, if we compare follow-up pain scores in the two groups, using a simple chi-squared test analysis, we find a p-value of 0.013, indicating a significant difference.

Conclusion

This study has demonstrated that a simple pain assessment tool, when linked to some action, in the hands of palliative care outpatients, may help achieve improved levels of analgesia. This is encouraging, and raises the opportunity for further clinical research in different settings.