bluuebunny/crossref_metadata_2025 huggingface dataset:
AUDIT OF END OF LIFE DISCUSSIONS IN PATIENTS WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE
Authors: Arnold David , Cheaveau Matthew , Beard Charlie , Reid Colette
Published: February 2014

Background

The NHS End of Life Care Council advises that end of life (EoL) discussions should be offered to patients with chronic obstructive pulmonary disease (COPD) who have certain poor prognostic markers. EoL conversations with advanced care planning can reduce a patient's anxiety during an exacerbation, allow informed decisions about what treatment they would (or would not) like to receive in the future, reduce unnecessary or unwanted hospital admissions, and enable patients to die in their preferred place.

Aims

To assess whether patients who are admitted to a respiratory ward with exacerbations of COPD, who fulfill the criteria, have been offered the opportunity to have such discussions. Secondary aims included (i) patient engagement, (ii) communication of outcomes (iii) communication of DNACPR orders.

Methods

Audit of all patients admitted to a respiratory ward with an exacerbation of COPD, within a 3 month period. Specifically looking for evidence of EoL conversations during the current admission, previous admission or clinic appointments.

Results

Of 48 patients admitted with an exacerbation of COPD, 20 fulfilled the criteria to be offered EoL conversations. The 3 month mortality of these 20 patients was 25%. Three patients (15%) had documented EoL conversations. One lead to the formation of an advance directive not to return to hospital, one described a patient's wish to have no further non-invasive ventilation, and one where a patient wanted full treatment escaltion in the future. Seventeen of the 20 patients were made DNACPR, however, only 4 had this communicated to the GP.

Recommendations

Identify patients on hospital board rounds that may be suitable for end of life discussions. If patients engage with EoL discussions this should be documented in the medical notes as well as the discharge summary. Further use of an existing “Poor prognostic indicators” letter, which is sent to the GP, noting engagement in EoL discussions and decisions around DNACPR orders.
Can the Palliative Care Outcome Scale be used to measure the positive impact of a hospital based palliative care liaison team?
Authors: Whitehurst Jane , Michaels Katherine , Montacute Nicola , Williams Sue , Ward Brenda , Gillett Janet
Published: February 2014

Background

The Palliative Care Outcome Scale (POS) is a holistic, validated, Patient Reported Outcome Measure (PROM). PROMs can enable evaluation of patient care, helping to improve service quality.

Aims

To assess POS as a tool for patient assessment and clinical audit in a nurse-led hospital liaison palliative care team (HPCT).

Methods

We used POS and POS-S (symptoms) at initial, weekly and last consultations in 30 patients and evaluated the HPCT experience of this.

We used the following Minimal Clinically Important Difference in scores to determine PCT effectiveness

80% percent achieving a one-point reduction in pain score

Statistically significant reductions in grouped POS and POS-S scores (Wilcoxon signed rank test)

Results

The HPCT saw 57 patients to collect 30 patients' data. (23 clinically unsuitable, 4 missed). Follow-up questionnaires were available in 19 patients for POS, 15 for POS-S (7 patients seen once, 1 data set destroyed, remainder missed).

A one-point reduction in pain score occurred in 74% patients (14 out of 19 with follow-up POS data).

Both POS and POS-S median scores improved. POS median score: initial consultation 17, last consultation 6 (p=0.002) POS-S median score: initial consultation 17, last consultation 8.5 (p=0.04).

▸ The HPCT felt that POS was useful to:

▸

Establish the patient's agenda

▸

Enable early discussion of psychosocial concerns

▸

Reduce the risk of missing significant needs

Concerns were:

▸

The staff time required to complete POS

▸

That patients found repeated questionnaires burdensome

That POS data may underestimate HPCT effectiveness as sometimes advice was disregarded and patients were discharged before a final assessment

Conclusions

The HPCT significantly improved patient well-being. However, repeat use of POS was burdensome and low inclusion and follow-up rates suggest POS is not a suitable audit tool to measure our HPCT effectiveness at this time. Using POS and POS-S at the initial consultation usefully established the patients' baseline status and needs. The HPCT will continue to use it in this manner.
THE DEVELOPMENT OF THREE INDIVIDUALISED CARE PLANS TO GUIDE NURSING STAFF WHEN CARING FOR PATIENTS IN THE LAST MONTHS OF LIFE
Authors: Rees Elizabeth , Henderson Amanda , Stothard Chris , Gibson Kathryn
Published: February 2014

Background

Implementation of the National End of Life Care Programmes ‘Transforming End of Life Care (EOLC) in Acute Hospitals’ has involved teaching and guiding ward based staff to make changes to patient care to improve the quality of care patients and their families receive. We were asked to advise on the EOLC section of the Trusts nursing specialist assessment (NSA) which is completed for all patients on admission. The EOLC section was rarely completed.

Aims

To develop written guidance to support and prompt staff about essential aspects of care for patients approaching the end of their life.

Methods

NSA changed to identify patients who are:

1. In the last months of life

2. Acutely unwell with uncertain recovery and expected to die within the next 1–2 months

3. Dying

Prompts were written to commence one of 3 care plans produced for each category – palliative care plans 1, 2 and 3.

Three care plans were written in Trust format, following consultation with ward nurses, Drs and community teams with prompts for staff to follow both for patients and their families while in hospital and also with discharge advice.

Results

The three care plans have been piloted within oncology, respiratory and elderly care.

Excellent feedback stating that the nurses have found the care plans extremely helpful in guiding and formalising the goals and aspects of care required.

Request from Trusts Chief Nurse to roll out the care plans ASAP to fill the gap the withdrawal of LCP has left.

Conclusions

Nursing staff work well with written guidance in the form of care plans to plan, deliver and evaluate patient care.

We are hoping that following Trust wide implementation of the care plans we will notice measurable improvements in the quality of care patients and their families receive at the end of life.
TRANSFORMING END OF LIFE CARE IN ACUTE HOSPITALS – HOW TO SET UP A TRUST WIDE PROJECT WITH BOARD LEVEL SUPPORT
Authors: Rees Elizabeth , Kite Suzanne , Henry Karen , Larder Melanie
Published: February 2014

Background

The Leeds Teaching Hospitals NHS Trust (LTHT) is a flagship Trust for the NHSIQ ‘Transforming End of Life Care (EoLC) in Acute Hospitals programme’ .

Previous EoLC initiatives had been led by the specialist palliative care team (SPCT) within existing resource supplemented by some non- recurrently funded projects. However, a step change in improved EoLC in this 2000-bedded acute trust required implementation at scale and a corporate approach to sustainability.

Aims

To develop a service improvement programme across the organisation to ensure that all patients at LTHT approaching the end of their life are identified and receive the best quality of care with their needs and the needs of their families met appropriately, within available resources.

Method

An approach was piloted within two specialties for six months, led by a triumvirate of senior manager, and SPCT lead nurses and clinician. The learning gained from the pilot informed a successful bid to the Care Pathways Programme Board for a corporate EoLC Service Improvement Project, with dedicated project manager support and Trust Board leadership (Medical Director)

Results

Stakeholders identified 4 workstreams (Education, Metrics, Interface with community, and Patients and Public Information Needs).

EoLC Project Board formed with senior representatives from across the trust, and with clear communication and accountability back to the Board.

Linkage made with other EoLC initiatives including the engagement of EOLC champions across the Trust.

EOLC process mapping sessions informed the work.

Conclusion

In order to implement measurable changes across a large Trust, dedicated project management skills and time are required to ensure momentum and connectivity between inter-related workstreams; to coordinate clinicians across specialties and general practice, and to link into trustwide structures which have the necessary authority and recognition to effect change.

A leadership triumvirate of manager, lead clinician and senior nurse works well.
OPIOID CONVERSION CHART : INTRODUCTION OF A USER-FRIENDLY VERSION
Authors: George Mariam , Wilkins Clare , Garner Idaliza , Powell Barbara
Published: February 2014

Background

Opioid dose conversion is an integral part of palliative care services. Though several such conversion charts exist, they generally lack simplicity and uniformity in their ease of use across the spectrum of palliative care professionals.

Aim

To develop a simple, easily understandable and user-friendly opiate conversion chart.

Method

Using a common conversion chart template, we modified diagrammatic representations to include simple, clear-cut formulae. The chart represents a ‘sun’ with 9 ‘sunbeams’. The oral morphine (mg/day) is the ‘sun’ at the centre of the chart, encouraging the conversion between different opiates to start with morphine equivalent doses. All conversions complied with Palliative Care Formulary (3rdedition), Leicestershire/Northamptonshire/Rutland cancer network ‘Guide to prescribing for patients with Advanced malignancy’ and the Oxford handbook of pain management guidelines. Laminated pocket-sized versions were produced to make it portable to enable rapid and easy dose conversions by the bedside. Feedback questionnaires were distributed among healthcare professionals in different roles working across hospice, hospital and community.

Results

Twenty-two feedback forms were returned. 95% (21/22) of professionals found it useful, with 68% (15/22) utilising it ‘often’/‘always'. All those who used it confirmed that it was a practical, simple and convenient tool. The chart empowered hospice-based nurses and community clinical nurse specialists to feel confident about the accuracy of dose conversions. It was also useful as a teaching aid, enabled appropriate dosage of transdermal opioids and served as a benchmark for provision of advice to other services. Specialist doctors and trainee doctors in other specialties who have rotated through hospice posts found it useful. Indirect positive feedback was reflected by an increase in the use of the chart across clinical professionals in Leicestershire.

Conclusion

This adapted user-friendly conversion chart has the potential to simplify and make uniform the use of opiates across the palliative care community.
THE ROLE OF NURSES IN PROVIDING PALLIATIVE CARE FOR DYING CANCER PATIENTS: A META-ETHNOGRAPHIC SYNTHESIS
Authors: Husaini Asmah
Published: February 2014

Background

Palliative care is a well-established approach to maintaining quality of life in people with advanced cancer. There is limited research exploring qualified nurses' role when providing palliative care for dying cancer patients. Much of it is qualitative and so findings cannot be generalised to other care settings.

Aim

To synthesis evidence from published qualitative studies the explored the role of the nurses when providing palliative care to dying cancer patients.

Method

A meta-ethnographic approach (Noblit & Hare 1998) was employed. Studies were included if they were undertaken between 1990–2012, data collection consisted of in-depth interviews and participants were registered nurses who provided palliative care to advanced cancer patients. Continuous comparative analysis was performed and metaphors were translated using reciprocal translation.

Results

The role of nurses in the provision of palliative care can be divided into two overarching themes; direct patient care and indirect patient care. Direct patient care includes assessment, care towards the family and providing physical and psychosocial care. Indirect patient care involves multidisciplinary team working and the practice of specialist and management skills to meet patients' needs. Care is seen as a continuous ‘process’ that consists of providing tangible and intangible aspects of palliative nursing care. The ‘tangible’ aspect of care is care carried out by nurses regardless of the context that they are in, and ‘intangible’ care is defined as nursing actions that can be changed/adapted according to the contextual or cultural circumstances of a particular setting.

Conclusion

This meta-ethnography has identified key components of palliative care nursing for dying cancer patients, regardless of the context of the care. This will permit cross-cultural comparison of palliative care provision to be undertaken in future research.
"DECIDING RIGHT" PROJECT, RIGHT CARE, RIGHT PLAN FOR RIGHT PATIENT
Authors: Than Tun , Adam Zahida , Wadhhwa Preeti , Ayubi Mohamed
Published: February 2014

Aims and Objectives

Although healthcare professionals perceive palliative care as a rewarding humane work, lack of training, leadership and resources are often cited as impediments to deliver high quality palliative care services. Recognising these hurdles and the scope for improvement in palliative care services across Leicester city, the commissioning group, the local hospice (LOROS) and Macmillan Cancer Support collaborated in launching an innovative “Deciding Right” project. This aims to promote identification of patients in their last year of life to provide a timely and robust multidisciplinary care based on the patient's choices.

Description of the Project

The highlights of the project include developing a local enhanced service (LES), appointing and training of four locality GP mentors to promote awareness, sign-post and support various local health professionals and pathway mapping with multidisciplinary organizations to establish an integrated palliative care services. The service specification of the LES focused on developing and training a palliative care lead GP for each participating practice, timely identification of patients suitable for the care plan, effective discussion with the patients, families and the multidisciplinary team to develop and implement the plan in collaboration, systematic recording of the care plan on the novel, purpose-built and user friendly template on System One, and reflective learning for further development through after-death-audits (ADA).

Results and reflections

Each practice in the city now has a palliative care lead GP who has received training in identification of patients in their last year of life, communication and care planning. The project achieved improvements in the palliative care register across the city along with paving the pathway to provide an excellence in palliative care through effective communication across multidisciplinary team. It also highlight the need for more comprehensive guidelines for anticipatory prescribing and co-ordination of palliative care in out of hours settings.
AN INTERIM AUDIT USING THE NCDAH PROFORMA OF 30 CASE NOTES OF PATIENTS WHO HAVE DIED UTILISING THE LIVERPOOL CARE PATHWAY
Authors: Tymon Lorraine , Morris Tracey
Published: February 2014

Background

The Liverpool Care Pathway (LCP) is utilised as a model of best practice in the last hours/days of life, ensuring that patients receive high quality of care tailored to their individual needs

The National Care of the Dying Audit in Hospitals (NCDAH) serves to provide a snapshot of performance against the recommendations of care when patients receive treatment supported by the LCP.

The Key Performance Indicators (KPI) are data driven metrics which illustrate performance of the participating NHS Trusts.

The coded sections within the KPI are divided into red, amber and green and each NHS Trust receives an audit report, benchmarking its service.

Aims

The primary aim of the project was to analyse current practice by undertaking an interim audit of 30 LCPs at Blackpool Teaching Hospitals NHS Foundation Trust in preparation for Round 4 of the NCDAH.

The purpose was to identify any gaps that needed addressing in order to comply with the guidelines for high quality care and to address any issues by ongoing education and support.

Method

We analysed 30 sets of case notes of patients whose end–of-life care was supported by the LCP. Using the NCDAH proforma template we examined compliance against the recommendations.

Results

Compared with the results of last year's audit we found:

4 hourly assessments carried out by staff had increased by 1%

Discussions around spirituality had increased by 9%

Medication prescribed on a prn basis had increased by 9%

Conclusion

Carrying out an interim audit provided an insight into current practice, highlighting deficits and offering valuable evidence to support ongoing education and training.
BASELINE AUDIT OF SUPPORTIVE CARE PROVISION FOR PATIENTS WHO DIED IN 2010 AND HAD LUNG TRANSPLANTS OR WERE ON THE WAITING LIST AT HAREFIELD HOSPITAL
Authors: Everitt Jane , Reed Anna , Jamal Humaira , Carby Martin , Sharon Fleming , Karen Collis , tracey Baker , Lauren Berry
Published: February 2014

Background

There is a lack of significant literature on provision of Supportive and Palliative care (SPC) for Lung transplant patients pre and post surgery.

Aims

A baseline audit of patients was undertaken to identify SPC access in the last year of life.

Data collection

Patients who died in 2010 on the lung transplant waiting list or had lung or heart and lung transplants were audited retrospectively. Patient demographics and end of life data were collected.

Results

In 2010 50% of post lung transplant patients who died were in Harefield Hospital. Most had SPC involvement but often late. One died in a hospice and none were known to die at home. Patients sometimes refused SPC referrals until very late. Communication to GPs rarely mentioned SPC. Most patients on the waiting list died in local hospitals.

Limitations of Data collection

There was a dearth of information for patients who died outside HH, and with one exception, there was no SPC data. This highlighted the difficulty of following the patient's journey through the healthcare system.

The NHS spine data only includes date of death.

Staff report anecdotally that conversations about advance care planning are often not documented.

Future audits

Contact GPs to collect data.

Outcomes

Action planning following this audit includes:

1) Weekly meetings between Transplant and SPC to discuss patients who are cause for concern with audited outcomes.

2) All patients on the waiting list will have access to Supportive care.

3) Place of death has now been included on hospital systems.

4) Improving access to SPC will increase support and services available to patients; families; carers and staff.

Other specialist centres managing complex patients with organ failure face similar challenges and may consider a similar approach.
ENHANCHING VITALITY AT END OF LIFE
Authors: Haraldsdottir Erna , Hardie Amy , Kendall Marilyn
Published: February 2014

Background

One of the key elements of the palliative care philosophy is to enhance patients' vitality at end of life. This can be challenging to achieve given the progressive nature of disease and weakness of the body. Collaboration between a documentary film artist, patients, their families and staff, in a Scottish hospice addressed this challenge.

Method

Adopting a participatory art based research method; the documentary film-maker worked with over 40 patients, family members and staff in the hospice to identify and expand on the reality and the life within a hospice. Following the patients' lead, further research into music and performance arts required collaboration with a music director and choreographer.

Results

Following an extended period of filming and editing, where the material was scrutinised and distilled into portraits and songs, twenty short films and a character led documentary feature films were developed into patient based narratives to be shared with the wider community.

Making and participating in a film was energising, exciting and added new dimension to patients' life even though physically demanding.

For patients it was also important to leave a legacy and a voice reflecting their strength and individuality as they use music and creativity to mirror their personal identity and the day- to -day life in the hospice.

Conclusion

Making a film within a hospice has enabled patients to have a voice as individuals and challenge current perceptions of the dying patients as weak and vulnerable due to their declining body and progressive illness.

Wide distribution of the film through television and cinema will encourage public debate across all medias, challenging assumptions about death, dying and the day-to-day life in a hospice.

Funding

Creative Scotland.
DNA CPR SCOTLAND POLICY: AN AUDIT OF THE SUCCESS OF IMPLEMENTATION IN NHS TAYSIDE
Authors: Douglas Claire , Harrison Michelle , Todd Ann-Marie , Munro Jemma , Essex Jane , Karuny Bheena
Published: February 2014

Introduction

People who have advanced metastatic cancer or a poor performance status are unlikely to survive a cardiac arrest. In May 2010, the Scottish Government published the National DNACPR Integrated Adult policy with the aim of reducing unsuccessful attempts at resuscitation by improving decision making and communication about DNACPR decisions. Our study aimed to assess the success of policy implementation in NHS Tayside.

Methods

A prospective casenote audit was performed for all patients admitted within a 30 day period to four clinical areas in Tayside; oncology, cardiology, MFE (medicine for the elderly) and Cornhill Macmillan Centre (hospice). Information obtained included diagnosis, past medical history, performance status, presence of a DNACPR form, patient outcome and whether completion and transfer of the form adhered to policy guidance.

Results

18% (5/27) of patients in Cornhill and 23% (7/30) of patients in oncology were admitted with a DNACPR form but none to cardiology (0/52) or MFE (0/24). During admission forms were present or completed in 92% (25/27) of patients from Cornhill, 78% (23/30) from oncology,19% (10/52) from cardiology and 29% (7/24) from MFE respectively. A significant proportion of patients without a form had metastatic cancer or poor performance status. Of patients discharged or transferred, the DNACPR form went with the patient in 100% of patients from Cornhill, 4% from oncology but none from cardiology or MFE. The form was either left in the notes, sent to the GP or the decision was reversed on discharge.

Conclusion

DNA CPR forms are being completed appropriately for many patients in the acute setting in Tayside, however many patients are not sent home with the forms despite the chances of surviving a cardiac arrest being negligible. Improvement in decision making and communication of DNACPR decisions with the patient, family and other professionals is required.
EVALUATING A SPECIALIST PALLIATIVE CARE INITIATIVE FOR NURSING AND RESIDENTIAL HOMES
Authors: Locker Sarah , Callin Sarah
Published: February 2014

Background

The End of Life Care report from the National Audit Office identified that 50% of care home residents who died in hospital, could have died in their care home. The support needed by care homes to enable residents to remain in their preferred place for death is complex; education alone does not change practice. We report interim data from a two year pilot of a hospice care home support team.

Aims

To evaluate the effect of the care home support team on palliative care outcomes.

Method

The intervention. A team of three (two whole time equivalent) palliative care nurse specialists work with six nursing and four residential homes. They review systems of care, implement good-practice guidance and deliver an education programme.Ad hocclinical access and a regular clinical forum provide on-going support. Data collection (September 2012-end August 2013). Baseline retrospective data for the year prior to service introduction has been collected from the pilot care homes for the following outcomes: hospital admission, death in hospital, preferred place documentation, actual and preferred place of death. Measures repeated at one year.

Results

Data from 10 care homes has been collected. Compared with baseline data, the following outcomes have improved for residents in pilot care homes: number of hospital admissions per annum (baseline; 146, review 70); deaths in hospital/all deaths per annum (baseline 15/81, 19%; review 18/134, 13%); preferred place of death documented (baseline 45/81, 56%; review 100/134, 75%); concordance with preference (baseline 89%; review 97%). Questionnaire feedback from residents, families and professionals involved with the service has also been positive.

Conclusions

This pilot data indicates that focused education and clinical support by a hospice care home support team is an effective way of improving quality of palliative care provision in nursing and residential homes.
HOW WELL DO THE GENERAL PUBLIC UNDERSTAND PALLIATIVE CARE? A MIXED METHODS STUDY
Authors: McIlfatrick Sonja , Hasson Felicity , Noble Helen , McLaughlin Dorry , Roulston Audrey , Rutherford Lesley , Johnston Gail , Kernohan George
Published: February 2014

Background

International research suggests that the general public appear to be confused about what palliative care is and who provides it.1 2An understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of care.

Aim

The aim of this study was to establish the current levels of awareness and perceptions of palliative care among the general public in Northern Ireland.

Methods

A mixed methods study comprising two phases was undertaken. A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. This was followed by semi structured telephone interviews (n=50).

Results

Responses indicated limited knowledge about palliative care. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A key aspect identified for promoting palliative care was the development of understanding and use of the term itself and targeted educational strategies.

Conclusions

Public awareness of the concept of palliative care and of service availability remains insufficient. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to improve the delivery of palliative and end-of-life care. (274)
HOW DOES PROVIDING AN ORAL HISTORY AT THE END OF LIFE INFLUENCE WELL-BEING OF THE INDIVIDUAL AND THE BEREAVED?
Authors: Winslow Michelle , Smith Sam
Published: February 2014

Background

Oral history captures and preserves patients' voices and involves them in the process of producing their own life histories. A Macmillan pilot project has created five oral history services in the north of England and Northern Ireland, additional to a service in Sheffield established in 2007. To understand the role of oral history in palliative care and bereavement, a further project has explored its significance amongst patients and bereaved family.

Aim

To assess the impact of recording an oral history with palliative care patients, and to understand how the recording is received in bereavement by family.

Method

Literature review and survey of life story work in palliative care settings; analysis of an existing archive of oral histories; semi-structured interviews with patients, family, bereavement group members and health care professionals.

Results

Analysis of archival and qualitative interview material has highlighted that patients and family appreciate a voice recording. Patients value having time to reflect and express identity in an oral history interview, and recording personal life stories can engender a sense of autonomy at a time when they wield little power in their lives. Bereaved relatives find the recording comforting: “It's a memory for me. I've got something that's a little bit of her.” Both patients and family find oral history cathartic.

Conclusions

We have established that oral history enhances patient experience of palliative care by providing them with opportunities to talk about their past and present in a non-medical context. Bereaved family highlight that a voice recording is extremely important to them. This research provides vital information to support the future shape and direction of oral history services.
A LIVING COMMUNITY PRESENCE: EVALUATING A CARE OF THE DYING VOLUNTEER SERVICE
Authors: Nolan Kate , Mason Stephen , Gambles Maureen , Ellershaw John
Published: February 2014

Background

This abstract describes the evaluation of a Care of the Dying Volunteer (CODV) service provided to patients (and their relatives/friends) in the last hours or days of life, piloted in four clinical areas at a large teaching hospital in the North of England.

Aim

To gather information regarding participants' perceptions and experiences of a CODV service, in order to improve and refine the volunteer training programme and future service delivery.

Methods

Three study specific questionnaires were designed to elicit feedback from three groups regarding their perceptions of the CODV service and training programme: bereaved relatives/friends, healthcare professionals (HCP) and the CODV themselves. In-depth interviews were untaken with bereaved relatives/friends, HCP and CODV's who had experienced/provided the CODV service. Interview data was triangulated around multiple perspectives in order to link ‘within-case analysis’ and ‘between-case’ analysis. All questionnaires were analysed descriptively.

Results

40 referrals resulted with 14 patients/families accepting the offer a CODV. 11 bereaved relatives/friends completed the questionnaire(s) and 10 consented to be interviewed. HCP's (n=60; response rate 27%) and CODV's also returned questionnaires for analysis (n=51; response rate 84%) and a sample were interviewed (n=14 & n=19) respectively.

The CODVs' viewed the training as appropriate in preparing them for their role and regarded the support encounters experienced as ‘profound’. Relatives perceived the CODV service as appropriate, supportive and very positive. HCPs regarded the presence of the volunteer supportive for the patient and a valuable source of additional patient information; e.g. patient conditional changes. Interestingly, the theme of patients “dying alone” was a core motivating factor for CODV's and frequently regarded by HCPs as challenging and where the CODV impacted the most.

Conclusion

Results from this pilot study demonstrate that a CODV service can be implemented in the acute setting, providing meaningful support to patients and their families in this crucial phase of life.
COMPREHENDING THE INEXPLICABLE: QUALITATIVE ACCOUNTS OF BLACK CARIBBEAN AND WHITE BRITISH PEOPLE SEVERELY AFFECTED BY MULTIPLE SCLEROSIS
Authors: Koffman Jonathan , Goddard Cassie , Silber Eli , Burman Rachel , Shaw Pauline , Barnes Fiona , Speck Peter , Higginson Irene
Published: February 2014

Background

Multiple sclerosis is now more common among minority ethnic groups in the UK but little known little is known about how they attribute meanings to their illness and to what extent they are culturally shaped; meanings may influence adjustment outcomes and attitudes to service use.

Aim

To explore the cognitive organisation and meanings of MS among black Caribbean (BC) and white British (WB) people severely affected by their illness and to understand how these may be culturally constructed.

Method

Semi-structured qualitative interviews were conducted among Black Caribbean (BC) and White British (WB) people with MS (PwMS) with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach.

Results

15 BC and 15 WB PwMS were interviewed with mean ages of 46.6 and 56.9 years respectively. Attributions were complex, with most PwMS reporting multiple explanations. Uncertainty, represents the first theme surrounding the aetiology of MS where participants constantly rehearsed“why me?”question in relation to their illness, a number citing considerable frustration. The second main theme, ‘logical and scientific’, was voiced more often by WB PwMS and accounts for arrange of genetic/viral influences, stress, environmental and lifestyle factors. Third, the ‘supernatural’ illness attribution theme departs from a biomedical perspective and was reported more frequently among BC PwMS. This theme included the sub-categories of religious challenge and divine punishment, a view although exclusive to BC participants was sometimes in conflict with their notions of modernity.

Conclusion

We identify causal attributions play important roles in determining emotional responses to MS. Taken together these findings suggest not only considerable cultural diversity in relation to MS causation but also diversity within groups. This highlights the need for health professionals to investigate such beliefs, particularly if supernatural causes are considered inherently uncontrollable. This has important implications for help-seeking and symptom-reporting behaviours.
EXPLORING THE PROCESS OF DECISION MAKING BETWEEN PATIENTS, FAMILIES AND COMMUNITY HEALTHCARE PROFESSIONALS AT END OF LIFE
Authors: Brogan Paula , Mcilfatrick Sonja , Hasson Felicity
Published: February 2014

Background

Many studies in palliative care report that the majority of people would prefer to die at home.1It is recognised that the delivery of this care often requires the involvement of many different health care professionals and groups of family members. International evidence highlights the importance of patient choice and the notion of shared decision making in end of life care. However, little is known about how decisions are made.

Aim

The aim of this study is to identify what happens in the process of decision-making at end of life (EOL); to uncover participant experience of that process and contribute understanding the issues for patients, families and professionals.

Methods

A multiple case study design using a qualitative approach was used. The sample included palliative patients living at home in the last 12 months of life (N=9); their family carers (N=10) and community based healthcare professionals, (general practitioners, nurses, social workers, allied healthcare practitioners) providing palliative care (N=56). Data collection included individual interviews (N=45), observation of interactions between participants, documentary review and focus groups (N=8) of professionals. Drawing on a shared decision making model, within and across case analysis was conducted using the Framework approach to identify themes and match patterns.

Results

Decisions are understood among the group via numerous one to one interactions. Subject to assumption and interpretation, decisions are often not explicitly stated and preferred place of death is avoided. Family are central to the process but marginalised from information. The process of death and the implications of dying at home are not explicitly discussed with patient or family.

Conclusions

Findings suggest that shared decision making process at end of life is complex. Greater understanding of decision-making in this setting is required to improve care for patients approaching end of life.
CONSTRAINTS AND ENABLERS FOR CULTURALLY APPROPRIATE END-OF-LIFE CARE IN NEW ZEALAND
Authors: Batten Lesley , Holdaway Maureen , Clark Jean , Allan Simon , Randall Clare , Marshall Bridget
Published: February 2014

Background

The Liverpool Care Pathway for the Dying Patient was introduced into parts of New Zealand in 2005. Unique ‘cultural goals’ were added, in recognition of the importance of the provision of culturally appropriate care.

Aims

To assess the use of the cultural goals in practice and to investigate stakeholders' experiences and perspectives of how the cultural goals influence culturally appropriate end-of-life care.

Methods

A mixed method study including, in this phase, two clinical audits, semi-structured interviews with 20 stakeholders, and a focus group with 20 Maori clinical staff. Interview data were analysed thematically, and audit data were analysed using descriptive statistics and content analysis.

Results

Participants identified many factors that acted as constraints or enablers in the provision of culturally appropriate care. These factors operated at multiple levels, including at the individual level of clinicians and carers, at the organisational level, the health sector level, and across cultural groups within our society. Constraints included staff discomfort in talking about cultural needs and providing cultural care, the increasingly multicultural health workforce with divergent understandings of cultural needs during the end-of-life phase, differing palliative care service contracts, and structural features of organisations that impeded staff meeting patients' and families' cultural needs. Enablers, such as in-service education programmes, addressed some, but not all of these constraints. Enablers operated mostly at the level of individual clinicians and services. Ongoing support and funding for development of these initiatives was relatively unstable.

Conclusions

Culturally appropriate care is a core priority to reduce health inequities related to access to palliative care. However the increasing complexity of the cultural landscapes of patients and families, clinicians and carers, services, the health sector and society mean that a sustainable, multilevel approach is required to address cultural needs.
A SYSTEMATIC REVIEW AND GUIDELINES FOR PALLIATIVE CARE PROFESSIONALS ON SWITCHING TO ORAL METHADONE FOR THE TREATMENT OF CANCER PAIN
Authors: Rogers Alexandra
Published: February 2014

Background

Methadone is a drug infrequently used in palliative care with complex pharmacokinetics and a risk of adverse effects (AEs) on switching. There is a paucity of evidence-based guidelines for methadone use within palliative care.

Aims

This systematic review evaluated the evidence for the different methods used to switch to methadone and the need for ECG monitoring as part of this. Guidelines for switching were formulated on the basis of this.

Methods

Two systematic reviews were carried out by searching EMBASE, MEDLINE, Cochrane and DARE databases; journals and reference lists identifying randomised controlled trials (RCT) or prospective studies comparing different methods of switching to oral methadone and the need for ECG monitoring as part of this process. SIGN methodology was used to develop guidelines.

Results

Twelve studies met the inclusion criteria. Of these, only one compared two methods of switching. The remainder were low-quality studies with no comparison group. The ‘3-day switch’ method, where morphine is tapered and replaced over 3 days, had an inadequately powered RCT to support its use. The ‘Stop-and-Go’ method, where morphine is switched to methadone immediately, had inconsistent results on benefits and incidence of AE and serious adverse effects (SAE). Two poor-quality studies that lacked clarity on the incidence of AE and SAE were found on theAd Libitummethod, where methadone is given as required up to 3-hourly after stopping morphine, and then converted to a stable daily dose. A high quality prospective cohort study showed the incidence of clinically significant QT-prolongation to be low and no episodes of ventricular arrhythmia or death were seen on switching to methadone doses less than 100 mg.

Conclusions

TheAd libitummethod of switching is recommended based on expert opinion. ECG monitoring is not required when switching patients to less than 100 mg methadone for treatment of cancer pain.
“It's a lot easier to say yes than no” - decision making in end stage kidney disease
Authors: Hussain Jamilla , Flemming Kate , Johnson Miriam
Published: February 2014

Background

Individuals with chronic advanced diseases such as end stage kidney disease (ESKD) are offered a growing number of choices regarding life-prolonging treatments. Health care teams (HCTs) play an important part in helping patients make decisions about with-holding and withdrawing such treatment.

Aim

To explore the similarities and differences in the decision-making process for patients with ESKD and their healthcare team (HCT), with regards to dialysis.

Method

A systematic review of qualitative studies. The search strategy was peer-reviewed and two independent researchers were involved in screening, data extraction, quality appraisal and synthesis. The Hawker et al (2002) appraisal checklist was used to provide an assessment of quality. The synthesis was conducted using thematic analysis.

Results

Eleven studies were eligible for inclusion, including 177 patients and 53 HCT members.With-holding dialysis:Factors weighed up by patients included peer experience, being a burden on family and wider society, and maintaining normal social roles. Some individuals instinctively opted for life-prolonging treatment at all costs, where as others accepted death as a natural course. HCTs on the other hand prioritised biomedical factors and relied on their own objective deliberation rather than patient preference. How individuals coped with their emotions was an important mediating factor. Problem-focussed copers sought various levels of input where as emotion-focussed individuals delegated choice.

Dialysis withdrawal

Problem-focussed individuals viewed the option to withdraw treatment as a ‘tremendous control’ to stop their suffering. Emotion-focussed copers however passively continued dialysis. HCTs struggled with the dilemma of determining when dialysis was prolonging suffering rather than improving quality-of-life and therefore continued to err on the side of life-prolonging treatment until dialysis was no longer physically possible.

Conclusions

Patients and HCTs are influenced by different factors when making decisions about dialysis. Informed shared decision-making requires greater transparency of the impact of such factors on choice.
INFORMATION PROVISION AND THE WIDER EXPERIENCE OF CARE: A QUALITATIVE STUDY OF PATIENTS DIAGNOSED WITH LUNG CANCER FOLLOWING EMERGENCY ADMISSION AND THEIR CARERS
Authors: Caswell Glenys , Seymour Jane , Crosby Vincent , Freer Sarah , Freemantle Alison , Wilcock Andrew
Published: February 2014

Background

40% of patients with lung cancer are diagnosed following an emergency admission to hospital (DFEA), but little is known about this group. There are particular challenges in providing information in these circumstances. This paper reports preliminary qualitative findings from a mixed methods study seeking to describe the characteristics, needs and outcomes of patients with lung cancer DFEA admitted over one year to a University hospital.

Aim

To explore patients' and carers' experiences of lung cancer DFEA, focusing on reports about information provision and needs.

Methods

This study is in progress. Patients DFEA and their carers are invited to participate in a qualitative interview following completion of the Charlson co-morbidities index; Sheffield Profile for Assessment and Referral to Care holistic needs questionnaire and a modified 2012 National Cancer Patient Experiences Survey. Interviews usually take place following hospital discharge. Data are analysed using a grounded theory approach, aided by NVivo.

Findings

From a target sample of 15 patients and 15 carers, to date we have recruited 10 patients (5m; 5f; aged 49–91) and 6 female carers (from 81 patients DFEA). One group of participants talk about their ‘need to know’; they report wanting information about all aspects of diagnosis, treatment and prognosis. A second group describe themselves as knowing ‘what the score is’, reporting no need for more information or not wanting to know ‘too much’. Some describe clinicians who respond well to their particular needs for information, while others reported non personalized responses: for example, the provision of information about treatment options when a cancer is too advanced for these. Where participants criticize information-giving, this influences wider perceptions of care.

Conclusion

High levels of morbidity present challenges when studying this group. The experience of information provision shapes wider experiences of care for patients DFEA with lung cancer and their carers.
DIFFICULT DECISION-MAKING AT THE END OF LIFE: STOPPING ORAL PALLIATIVE ANTICANCER TREATMENT. A SYSTEMATIC LITERATURE REVIEW AND NARRATIVE SYNTHESIS
Authors: Clarke Gemma , Johnston Simon , Corrie Pippa , Kuhn Isla , Barclay Stephen
Published: February 2014

Background

Current guidelines set out when to start anticancer treatments but not when to stop as disease progresses and death approaches. Older cytotoxic agents are administered intravenously. Most newer drugs, such as Tyrosine-Kinase Inhibitors (TKIs), are oral and widely used in incurable disease with evidence of a few months' survival benefit. New generation agents are considerably more expensive, typically around £5K per month, and perceived as easier to start than to stop.

Aims

Systematic literature review examining decisions to stop oral and parenteral anticancer agents in clinical practice, focusing on: a) How are decisions made? b) When are they made? c) Why are they made? d) Who makes them?

Methods

Seven electronic databases (Embase, Medline, PsycINFO, CINAHL, ASSIA, Web-of-Knowledge, Cochrane Collaboration), grey literature, references and citations were searched.

Results

Forty-nine eligible papers were located. No studies were found concerning criteria for stopping TKIs in practice: most studies examined palliative chemotherapy generally. Key findings: The complexity of chemotherapy regimes means that decisions are not one-off, but rather an on-going process, before all treatments are finally stopped. This may involve switching to alternative therapies and taking breaks. Treatment was stopped when side-effects or burdens became too great. Non-clinical factors were also influential, including physicians' personal experiences, emotions and history. While decision-making was part of the on-going physician-patient interaction, there was variation in who made the final decision: in some studies decisions to continue were patient-led, in others physicians continued treatment if there was evidence of benefit. Some studies presented stopping as ‘biological fact’, treatment being stopped when the patient became too ill.

Conclusions

Evidence to inform decision-making concerning stopping palliative anticancer therapy is variable and absent for new generation oral agents such as TKIs. Further research is urgently needed in this area to inform optimal patient care decisions in a resource-constrained NHS.