bluuebunny/crossref_metadata_2025 huggingface dataset:
ST.CHRISTOPHERS GROUP PARTNERSHIP WITH THE ROYAL ACADEMY OF ARTS
Authors: Sands Mick , Tasker Marion , Dives Tamsin , Lawson Gini , Ridley Andy , Prince Gerry , Tsiris Giorgos
Published: February 2014

Background

This paper explores and assesses a dynamic annual arts partnership organised by the hospice and the Royal Academy over the past three years.

The Royal Academy is an independent institution led by eminent artists and architects that promotes the creation and appreciation of the visual arts through exhibitions of international importance, education and debate.

The St. Christopher's Group promotes and provides skilled, compassionate, high quality palliative care and has a vision of the place and therapeutic purpose of the arts both in end of life care and as part of health promotion.

Patients visit a major art exhibition and work with artists to create their own art as part of a joint project.

Aims

To give patients special access to major Academy exhibitions and to provide workshops to create their own art, individually and collaboratively; exhibiting work at the Royal Academy and the hospice; promoting healthier attitudes and organising public discussion of issues raised by project and exhibition; to explore the place of the arts and a major national arts institution within the end of life journey of hospice patients and their families.

Results

Patients were motivated to complete the artwork and visit the Academy. Working in the atmosphere of a major exhibition and seeing their art exhibited was very affirming. They developed new respect for their work, felt enriched, created positive memories. A major end of project event at the Academy provides a forum for wider debate with eminent artists, dying patients and the general public. For patients: increased confidence, motivation, self-discovery, achievement, affirmation, celebration.

Conclusions

It's difficult to develop a project over time with patients who are managing complex medical issues and fluctuating levels of illness. Travel and mobility concerns challenge careful planning. Such projects depend on multi-professional collaboration. Many art institutions hold similar visions of inclusivity, education, debate. Such projects are eminently transferable.
DISCHARGE AND ITS PLANNING IN PALLIATIVE CARE; A TIME AND MOTION STUDY
Authors: Smith Louise , Gale Sue
Published: February 2014

Background

The discharge of Palliative Care patients is deemed complex solely by their nature of being Palliative. Observational studies of discharged patients within a palliative care unit revealed them to be fragmented and tardy. A time and motion study was undertaken with the aim of highlighting the complexities of discharge and its planning, the length of time taken, and evaluation of the time wasted.

Method

Data were collected from 12 patients over a six week period using a purposefully designed pro-forma comprising 13 elements of discharge. Staff self-assessed discharge activities prospectively using a tick box system. Each pro-forma was nurse anonymous and space allocated for start and completion time of activities and for staff to write notes concerning the element they were involved in. Missing data was calculated using the average duration of activities previously recorded for the same data field.

Findings

An average of 4 nursing staff were involved in each discharge, taking 1 hour and 39 minutes per patient. 116 activities were recorded in total, averaging 10 per patient. Calls to community staff were the most time consuming activity, averaging 5 calls per patient at 20 minute duration. Waiting for return calls impeded discharge. Data reporting and findings are under reported due to time constraints on staffing.

Conclusion

A discharge coordinator role should be considered to create a more integrated patient pathway and redress some of the problems currently highlighted. Enabling the development of a discharge policy encompassing a rapid discharge pathway for patients who's preferred place of care is home, a more coherent and in-depth holistic assessment, and the commencement of national and local incentives such as Coordinate my Care. A discharge coordinator would provide patients with a timely and succinct discharge pathway, and enhance communication with community teams. Nursing time saved would be better utilized giving hands-on care.
'IS IT MY LAST CHRISTMAS DINNER?' SURVIVAL OF CANCER PATIENTS HAVING PALLIATIVE CHEMOTHERAPY DURING CHRISTMAS PERIOD
Authors: Silverman Rafael , Smith Louis , Sundar Santhanam
Published: February 2014

Background

Advanced incurable cancer patients quite often live by milestones such as son or daughter's graduation, birth of a new grandchild or festive periods such as Christmas. Cancer patients need practical and real life survival information to plan their limited life. But most of survival data available in literature is from fitter patients in clinical trials who have a better survival. There is a dearth of real-life, pragmatic, survival information from routine clinical practice. To address this need, we assessed the chances of patients having palliative chemotherapy during 2011 Christmas period to survive until the 2012 Christmas period.

Methods

All adult cancer patients, who had palliative chemotherapy in Dec 2011, were identified from the electronic chemotherapy prescription system (ChemoCare®) and survival data was extracted from the Hospital electronic records. 30-day mortality assessed as per NCEPOD SACT report recommendation.

Results

Median age was 65 years (range 31 to 87 years) and 52% were female. Site of primary cancer was Breast (18%), Lung (17%), Ovary (12%), Colon (11%), Prostate (10%), Kidney 8% & other sites in 24%. Median survival was 10.5 months (range 0 to 21 months). 1.9% of patients died within 30 days of chemotherapy. Only 45% of patients who had palliative chemotherapy during December 2011 were alive on 2012 Christmas day. But reassuringly, 30% of patients were still alive in August 2013 and these relatively long term survivors were distributed across the disease spectrum.

Conclusion

A significant number of patients (55%) died before the next Christmas period. Hence clinical judgement is critical in prescribing palliative chemotherapy to patients during the Christmas period. Patients, who are clinically judged to be poorly and unlikely to survive a year, should be given the opportunity to skip chemotherapy and spend time with family during Christmas period if they wish to do so.
TOO BUSY TO CARE?
Authors: Jones Debbie , McConaghy Margaret , Haywood Chris , Coackley Alison
Published: February 2014

Background

An increase in the complexity of patient's admitted to the Hospice and a greater use of acute interventions had resulted in staff feeling“too busy to care”with less time to provide high quality care.We recognised the need to change working practices to improve patient experience and staff satisfaction. After reviewing possible models and undertaking a scoping exercise, we agreed to implement the NHSReleasing Time to Care: The Productive Ward as a recognised quality initiative. This was previously restricted to hospital and community use, designed to help teams review working practices and minimise inefficient systems. This was supported at Network level in collaboration with 5 other Hospices.

Aims

Increase Time for Caring therefore improving patient experience

Improve departmental/inter-departmental communication

Improve patient /staff environment

Improve staff satisfaction

Approach used

Network support

Enhanced team working

Staff and senior management commitment

Collaborative module implementation training

Phased roll out

Evaluation at steering group level

Outcomes

Confirmed network funding in conjunction with other hospices

Network training and support to empower staff

Focus on collaborative approach, shared learning experience, making a wider impact than working in isolation

Transparent care provision using quality measures

Efficient staff working practices

Cost effectiveness, efficient use of limited resources

Improvement in communication across all services and local hospices

Awareness of the importance of environment; little wins to improve patient care have a positive effect on staff morale

Improved patient safety and standard of care evidenced by quality measures

Benefit at local, organisational and network level

Application to Hospice Practice

Improved collaboration and networking

Useful toolkit that has impacted on time for caring making a difference to patient experience and staff satisfaction

Transferability

Supports integrated working
WHAT DO NON-QUALIFIED STAFF IN A SPECIALIST HOSPICE IN-PATIENT UNIT FEEL ABOUT CARING FOR PATIENTS WITH ADVANCED DEMENTIA?
Authors: Salt Susan , Green Jennifer
Published: February 2014

Method

In preparation for a refurbishment, intended to improve the care environment for patients with end stage dementia, a paper questionnaire survey of healthcare assistants, domestics and catering staff was devised to explore the staff's understanding Their views about meeting their needs. Changes the organisation needed to make Each staff member was given the questionnaire at work by their line manager with a period of two weeks to return it to a collection point in the hospice reception.

Results

20 out of a possible 43 staff replied (46.5%)

Knowledge

Most were aware of the number of people with dementia in UK but overestimated life expectancy and under estimated the length of their dependency on others for activities of daily living. The majority indicated a prognosis of 10 years or more from diagnosis (81%)

Training needs

Whilst well informed about symptoms a significant number of staff felt they would need training around meeting patient needs and particularly how to communicate effectively.

Physical environment and impact on caring for other patients

Staff were concerned about the impact of patients with dementia on other patients and the fear of the patient “wandering off” Concern was also expressed by the majority that staffing levels would need to be increased to accommodate these patients.

Conclusions

The response rate to the questionnaire was disappointing but other literature suggests that the findings are in line with the views of qualified members of staff. Staff appeared to underestimate the palliative care needs of people affected by the disease. These staff members regularly encounter confused and disorientated patients, yet the label of dementia appeared to raise additional concerns. This needs further exploration.
INDWELLING URINARY CATHETER USE IN END OF LIFE CARE AT UNIVERSITY HOSPITALS SOUTHAMPTON NHS FOUNDATION TRUST
Authors: Farrington Naomi , Richardson Alison , Fader Mandy , Prieto Jacqui
Published: February 2014

Background

Patients at the end of life often suffer from urinary difficulties. A systematic review (Farrington et al, in press) found minimal research to indicate how these difficulties should be managed at the end of life, representing a substantial knowledge gap.

Aims

The audit aimed to evaluate existing catheter practice. Objectives were: to measure the prevalence of indwelling urinary catheters at the end of life; to measure the use of documentation for catheter insertion and care (as per Trust policy); and to measure the prevalence of continence screening on admission (as per Department of Health guidelines).

Methodology

This was a retrospective examination of the case notes of 64 patients who died on two oncology wards and a hospice from 08/03/13–16/05/13. Required information was extracted and collated using a pre-prepared data collection form.

Results

63% of patients had an indwelling urethral catheter during their admission, most commonly inserted due to ‘severe or terminal illness or disability that prevents toileting’, though reasons given were often vague or contradictory. Trust documentation was present in 75% of cases where catheters were inserted. 75% of patients received a continence assessment on admission. These were often brief, and not updated if the situation changed.

Conclusions

It appears confusion exists over when and why catheters should be inserted or removed at the end of life. Documentation is not updated when changes in care needs occur, and requirements are not reassessed once a catheter has been inserted. This indicates a lack of knowledge or understanding about what might be the best course of action.

Recommendations

Research is needed to explore why indwelling urinary catheters are inserted/removed at the end of life.

Education and training are required on the importance of undertaking assessment and the maintenance of written records regarding catheter insertion and care.
ESTIMATING GLOMERULAR FILTRATION RATE IN PALLIATIVE CARE PATIENTS: COMPARISON OF THE COCKROFT- GAULT AND ABBREVIATED MODIFICATION OF DIET IN RENAL DISEASE FORMULAS-IS IT RELEVANT TO CLINICAL PRACTICE?
Authors: Patel Anoosha , Frame Karen
Published: February 2014

Background

The National Kidney Foundation, Kidney Disease Outcomes Quality Initiative recommends the Cockcroft Gault (CG) or abbreviated modified diet in renal disease (aMDRD) formulas for estimating Glomerular Filtration Rate (GFR). Clinical laboratories routinely use the aMDRD equation, which is not recommended for patients with extremes in muscle mass or diet, common in palliative care populations whose risk of renal impairment increases with older age, polypharmacy and nephrotoxic drug exposure.

Aim

To compare the aMDRD and CG formulas for estimating GFR in palliative care patients, and determine the prevalence of renal impairment and impact on clinical practice.

Audit Method

Retrospective case note review of 69 patients referred to a hospital specialist palliative care team. Patients with Chronic Kidney Disease (CKD) identified on aMDRD and CG eGFR. Standardised proforma used for data collection.

Results

37/69 patients identified with CKD (eGFR <90).

24/37 had a difference between aMDRD and CG estimation of GFR resulting in a change in CKD staging category.

CG eGFR improved staging category in 4, 3/4 weighed390 kg.

CG eGFR worsened staging category in 20.

17/20 deteriorated a single staging category. 11/17 weighed 50–69 kg.

3/20 deteriorated >1 staging category. All weighed less than 44 kg, with a serum creatinine <110 micromol/L.

10/37 required renal drug dose adjustments for eGFR. In 3 patients the method used to estimate GFR would change dose of medication prescribed.

Conclusion

CKD is prevalent in palliative care patients, and affects prescribing.

The aMDRD formula could overestimate GFR in underweight patients and underestimate GFR in overweight patients relative to CG. The CG formula may be a better method of assessment of eGFR in palliative care patients.

Ultimately comparison of CG and aMDRD formulas to renal inulin clearance (the gold standard assessment method for GFR) is required to determine the best method for estimating GFR in a palliative care population.
A RETROSPECTIVE REVIEW OF ANTIMICROBIAL PRESCRIBING AND INFECTION PREVALENCE IN A PALLIATIVE CARE UNIT
Authors: McKane Jill , Addie Susan , McGowan Mairi-clare
Published: February 2014

Introduction

Hospice patients are highly susceptible to infections of the urinary and respiratory tract.1 2 3 4The use of antimicrobials for symptom control should be considered against the burden of treatment for the patient as well as antimicrobial resistance.1 3 5 6 7

The Scottish Antimicrobial Prescribing Group produce guidance and targets for hospital based empirical prescribing. The aim is to reduce clostridium difficile infection.7Empirical prescribing standards state 95% of antimicrobials prescribed should be in line with local policy with rationale for use documented.7These hospital targets are applicable to the hospice setting.8

Method

A consecutive retrospective case note audit was completed for a four month period at St Vincent's Hospice in Howwood. An audit proforma with data collection parameters was developed during this process.

Results

Thirty-three case notes were audited: 76.7% of patients received at least one course of antimicrobials during their admission. The main indications for antibiotics were urinary tract(34%) and lower respiratory tract infections (60%). Indications for prescribing were specified in 88% and duration specified in 68% of cases. Of these 38% completed the course, 35% were continued longer and 26% were discontinued early. Antimicrobial selection, dosing and route were in line with the Greater Glasgow and Clyde policy in 78% of prescriptions; however only 51% also included documentation of duration. Of these prescriptions 91% were prescribed empirically without microbiology culture data.

Discussion

The prevalence of infection rate, antibiotic use and improvement of symptom burden is variable within the literature.1 2 3 4 5There is scope to improve practice surrounding antimicrobial initiation and documentation. Existing local guidelines are not specific to hospice care and should be adapted. We recommend and are working towards:

▸ Palliative Antimicrobial Guideline development and liaison with local antimicrobial stewards.

▸ Development of St Vincent's Hospice antimicrobial toolkit with inclusion of medical handover tools.

Re-audit and education.
PATIENT CHOICE OF LAXATIVE MEDICATION FOR TREATMENT OF OPIOID INDUCED CONSTIPATION (OIC). A SERVICE EVALUATION AT SHEFFIELD CENTRAL CAMPUS
Authors: Fingas Samuel , Hurst Sarah , Davies James , Newell Julia , Ahmedzai Sam H
Published: February 2014

Background

Opioid-induced constipation is common in palliative care. The evidence base for most laxatives and rectal interventions is poor, but for sc methylnaltrexone is good. Patient choice is important for individualising treatment.

Aims

To identify if patients want to choose their laxative treatment from current options. To identify acceptability of different routes of administration and what factors are important to patients when making a decision.

Method

Patients were recruited who were on regular opioid and laxative medications, could give informed consent and had sufficient English. Bowel obstruction or stoma were exclusion factors. A piloted structured interview elicited views and experiences. Patients were asked to rank treatment options, with reasons, in a clinical scenario where they had not opened their bowels for 7 days. They were given written information about the three options of oral, rectal and sc injection (methylnaltrexone) with opportunity to ask questions.

Results

30 patients (20 male) took part, mean age 61 years (range 29–88). 50% had previously been ≥7 days without a motion. 17/30 (57%) had experience of rectal measures, none of injection. Awareness of treatments was: oral 100%, rectal 70%; injection 7%. 87% of patients would prefer to be offered a choice, but in only 3/67 treatments previously received was choice offered. 4/17 (24%) receiving a rectal intervention had a bad experience and would not consider this again. First choice was injection for 40%, oral 30% and rectal 30%. Rectal route was ranked last choice by 53%, a common reason being embarrassment.

Conclusion

Palliative care patients are not being offered choice in OIC management. In the absence of evidence-base for oral and rectal measures, patients should have information about methylnaltrexone and be allowed to choose.
THE PROCESS OF IDENTIFYING A STANDARD ANALGESIA CONVERSION CHART FOR USE IN PALLIATIVE CARE
Authors: Evans Caroline , Aslett Michelle
Published: February 2014

Background

Specialist palliative care doctors and nurses calculate breakthrough and opioid conversion doses of analgesia for patients as routine clinical practice. It was identified that different specialists and individuals used different opioid charts varying in format and content. It was considered whether there was a preferred chart to standardise best practice and reduce variability and clinical error.

Aim

To identify an analgesia conversion chart which could be recommended for standard practice in a palliative care Hospice in-patient unit (IPU) and community setting.

Method

The study team comprised of a Hospice IPU nurse and a specialist pharmacist. Five commonly used conversion charts were identified (sourced from local guidelines and http://www.palliativedrugs.com/). A questionnaire comprising five routine scenarios of breakthrough doses, with two conversions per chart, was distributed to 40 Hospice clinicians working in either IPU, community or both settings. Recipients were asked to anonymously complete calculations and feedback their opinion on the chart format, style and ease of use of each chart. A non-healthcare professional participated to contribute a non-specialist opinion and identify “assumed” information. Responses were analysed from a perspective of mathematical accuracy and usability.

Results

A response rate of 40% was achieved (16/40). No one style of conversion chart was the preferred chart; some charts did not generate consistent conversions. Some participants highlighted that their learning style required illustrations rather than a tabular format. A reliance on a background clinical knowledge was identified.

Conclusion

Whilst each of the conversion charts had merits, no one conversion chart was preferred by all participants or professional discipline or in a setting . The experiences, preferences and learning styles of palliative care professionals should be considered in devising training of drug conversions.
PROVISION OF SPECIALIST PALLIATIVE CARE SUPPORT TO PATIENTS AND CARERS BY TELEPHONE
Authors: Dale Tim , Wee Bee
Published: February 2014

Background

The community team at Sobell House needed to find ways of managing increasing numbers of referrals. It was felt that one person exclusively undertaking telephone support would free more time for others to visit patients with the greatest need at home. The idea was viewed by some with scepticism –“palliative care by phone? How does that work then?”. In December 2009 an advanced nurse practitioner was appointed on a six month trial.

Process

The telephone support nurse holds a caseload of 80-100 patients. Call frequency is agreed individually and ranges from weekly to monthly. Patients or others can also phone for advice or to discuss changes. Home visits, outpatient appointments or admissions can be arranged as needed. Aspects of care covered include psychological support, symptom management, medication changes, coordination with other services, the provision of information, suggesting ‘coping strategies’, and so on.

Results

The role rapidly proved its worth and the post was made substantive after three months. Feedback from patients and carers from three surveys using detailed questionnaires has been unequivocally positive:We find it very reassuring that help, support and understanding is just a phone call away … Thank you for being there for us and making a difference …[has]taken a positive holistic view outside the treatment regimes … They[other services]are more task & treatment orientated, this provides something which supports living my life.More detailed feedback is available for presentation.

Conclusion

Regular telephone contact in palliative care can work safely and effectively in providing support at all levels. The role is fully integrated into and valued by the community team and service as a whole. Key is an open, empathic and unhurried approach.
HOW ACCEPTABLE IS MEDICALLY ASSISTED NUTRITION AND HYDRATION IN PATIENTS APPROACHING THE END OF LIFE? – A SERVICE EVALUATION
Authors: Ahamed Ashique , Fingas Sam , Beech Adam , Nock Catherine , Newell Elizabeth , Newell Julia , Ahmedzai Sam
Published: February 2014

Background

Patients nearing the end of life can have difficulty in eating and drinking due to variety of reasons. Currently there are differences of opinion in perceived benefits of medically assisted nutrition and hydration (MNH) for dying patients who have inadequate oral intake.

Aims

We conducted a study of patients with advancing disease but not yet at end of life, to assess their attitudes towards MNH if they became unable to have adequate oral intake. A structured interview was developed and piloted before being used. It detailed four different methods of MNH: nasogastric tube feeding, PEG feeding, intravenous drip (IV) including total parenteral nutrition, or subcutaneous hydration (SC). Photographs and samples of the devices were shown. The study was approved as a service evaluation and was conducted in one Sheffield hospital during March-June 2012.

Results

36 patients were identified who were suitable to enter the study, of which 5 declined. 31 patients completed the study (19 females). 17 responded that they will consider MNH if they became unable to eat or drink. IV and SC route were the most favoured methods, mainly because of familiarity. NG tube feeding was the least favoured route. Most patients felt that maintaining nutrition and hydration was a necessary part of their life. Patient's previous experiences also played a part in their accepting or rejecting MNH.

Conclusions

This preliminary study suggests that MNH is likely to be accepted by many patients who may need it near the end of life (although these subjects were not at that stage). It also highlighted the benefit of discussion using visual aids to help patients make an informed choice about having MNH and the method. We are preparing a larger multicentre study in order to assess whether these findings are replicable in a variety of settings.
HOW COMMON IS DELIRIUM IN PALLIATIVE CARE INPATIENT UNITS AND WHAT IS THE OUTCOME FOR THESE PATIENTS?
Authors: Porteous Anna , Dewhurst Felicity , Grogan Eleanor , Lowery Lucy , MacCormick Fiona , Paxton Ann , Vidrine Jennifer , Walmsley Rowan
Published: February 2014

Background

Delirium affects up to 50% of patients on medical wards (NICE), however the impact in palliative care units is unclear, with prevalence estimates ranging from 13–64%. Use of delirium screening tools in palliative care is inconsistent and consensus opinion is lacking. The short-CAM is a well-researched, observational tool, recommended by NICE in high-risk in-patients. It is often favoured for its ease of use and inter-rater reliability and is one of a limited number to be validated in the palliative care setting.

Aim

To identify the prevalence, incidence and outcome of delirium in five specialist palliative care inpatient units (SPCUs) in the North East using the short-CAM.

Methods

Adult patients admitted to five SPCUs were screened for delirium using the short-CAM. Patients with significant communication barriers were excluded. Screening occurred on admission, weekly and if clinical change raised the suspicion of delirium. Anonymised patient data was collected by clinical staff based on the units between April and August 2013.

Results

Two hundred and ninety-one patients were screened for delirium using the short-CAM during the study period. Thirty-four (11.7%) patients were delirious (CAM-positive) on admission to the SPCUs. Twenty-four patients (8.2%) became delirious during their admission. Resolution of delirium occurred in 38.6% of cases. Of 126 patients who died during their admission, 58 (46%) had been delirious prior to death.

Conclusion

Overall, delirium (as identified by the short-CAM) affected 20% of patients included in this study. Our findings demonstrate a lower prevalence and incidence of delirium amongst palliative care patients than many published studies. This may relate to diagnostic limitations of the short-CAM, as well as variations in the sensitivity of screening tools employed in these studies. It is clear that delirium is associated with poor prognosis. Further studies to explore the impact and management of this distressing condition are warranted.
OPIOID PRESCRIBING IN A COHORT OF DISCHARGED HOSPICE PATIENTS
Authors: Ackroyd Jeena , Hassell Joseph , Khalid Irfan , Rachel Sheils
Published: February 2014

Background

Morphine is recommended by NICE (2012) as the gold standard first line oral step 3 opioid for managing pain in palliative care patients. Alternative opioids are used e.g. if patient has renal failure or due to intolerable side-effects.

Aims

Assess which strong opioids are prescribed for patients on discharge from a specialist palliative care inpatient unit

Look at the reasons why patients are discharged on alternative opioids

Observe which opioids are prescribed for patients with renal impairment

Method

Retrospective review of the case notes and drug charts of 50 patients discharged from Overgate Hospice (October 2010 to November 2011).

Results

42/50 patients (82 %) were discharged on a strong opioid. 31/50 (62%) required a regular opioid. 15 patients were on regular morphine, 14 were on alternative opioids and 2 patients were on both regular morphine and an alternative opioid. 8 patients who were discharged on a strong regular opioid had an eGFR (estimated glomerular filtration rate) of less than 60, and 7 (88%) were prescribed an alternative opioid, most frequently oxycodone.

The most common reason for patients being discharged on alternative opioids was renal impairment 8/14 (57%). Other reasons included nausea and vomiting, inadequate analgesia and tablet burden.

Conclusions

In a specialist palliative care population morphine continues to be effective as a first line treatment as recommended by NICE (2012). The most commonly cited reason for alternative opioid use was renal impairment. However further research would provide evidence for when to use alternative opioids first-line for patients with renal impairment.
CANCER CARERS MEDICINES MANAGEMENT: A FEASIBILITY TRIAL OF AN EDUCATIONAL INTERVENTION FOR MANAGING END OF LIFE PAIN MEDICATION
Authors: Hopkinson Jane , Hughes Jacki , Lowson Elizabeth , Richardson Alison , Duke Sue , Anstey Sally , Bennett Mike , Smith Peter , May Carl , Latter Sue
Published: February 2014

Background

Cancer accounts for 1 in 4 deaths in the UK. A majority of people with advanced cancer will experience pain and family carers play an important role in managing pain medication at home. There is evidence carers need support with this, yet no research in the UK has developed and tested theory-driven interventions to help them manage pain medicines. We are conducting a Phase I-II feasibility study (as defined by the Medical Research Council guidelines for developing a complex intervention) to develop a new intervention: Cancer Carer Medicines Management (CCMM).

Aim

To summarise the development of CCMM, outlining the process of intervention development.

Method

A staged multi-method approach was used to obtain current evidence to inform CCMM's development: a systematic literature review of interventions for carer end of life medicines management; a scoping exercise concerning practice and theoretical contexts; interviews and user involvement group consultations with patients, carers, and health professionals with palliative care experience. This information informed two workshops which used participatory action research processes to design and develop an intervention which will be further refined through a consultative review process.

Results

To date we have found that this staged approach is appropriate and successful in enabling an evidence based intervention to be designed collaboratively. This also provides a means by which the clinical applicability of the intervention can be refined as it develops.

Conclusions

Refining this intervention as it develops will ensure that it reaches the feasibility trial stage with a robust grounding in carer experience, clinical practice and research evidence. In turn, the intervention will have the potential to enhance the practice of nurses in the community to meet carers' needs in pain medication management. This project is funded by the Dimbleby Marie Curie Cancer Care Research Fund; grant number DCMD-RF-12-05.
DYING IN A DGH
Authors: Cargill Tamsin , Turp Matthew , Wale Jane
Published: February 2014

Background

In Milton Keynes half of people die in hospital. It is not known how many patients and their families have the opportunity to discuss end-of-life care in hospital.

Methods

Review of the electronic medical records of all those that died in Milton Keynes Hospital during November 2012.

Findings

Of the 67 records analysed cancer, chronic obstructive pulmonary disease or left ventricular failure was the primary or secondary cause of death in 62% (n=42). 31% of patients (n=21) were seen by the palliative care team. Patients seen by palliative care were significantly more likely to have a signed Do Not Attempt Resuscitation form (95%; n=20 vs 78%; n=36; p=0.004), a discussion about end-of-life treatment (n=4; 19% vs. n=2; 4%; p=0.003), and more likely to state their preferred place of death (n=7; 33% vs. n=2; 4%; p=0.001). End-of-life issues were often discussed with the family rather than the patient themselves. End-of-life was discussed with the families of patients seen by palliative care in 90% of cases (n=19) compared to 54% (n= 25) of those not seen by palliative care.

Conclusions

The end-of-life wishes were not discussed in all patients.All aspects of end of life care were significantly more likely to be discussed with patients or families who had been seen by the palliative care team. End-of- life care decisions were discussed with the patient's family more often than the patient themselves. Often patients were too unwell during their last illness to meaningfully participate in end of life discussions.

The AMBER initiative, soon to be piloted in Milton Keynes, promotes early identification of patients at risk of dying within 2–3 months and initiates end-of life care discussions with them. This and improved communication between primary and secondary care about a patient's end-of- life preferences should improve future care.
PUTTING RESEARCH INTO PRACTICE: MAKING A DIFFERENCE TO CARE
Authors: Pickard Jane , Feathers Luke
Published: February 2014

Background

In 2012 a study to explore hospice nursing and medical staff knowledge of, and attitudes towards, organ and tissue donation was undertaken. The study identified that the barriers to discussing tissue and organ donation were multiple and the results highlighted several recommendations:

▸

Increase staff awareness and knowledge

▸

Introduce guidelines onwhocan donatewhatandhow

▸

Increase patient awareness of the option of tissue donation

▸

Explorewhenis the right time to ask a patient about their wishes relating to organ and tissue donation

Putting research findings into practice

To address these, key links have been established with the National and local acute Trust Organ and Tissue Donation Teams. This has enabled the facilitation of a teaching and awareness session for clinical staff to enhance their knowledge about who can donate, which tissues can be donated, the process of donation, and what to do if a patient expresses a wish to be a donor.

Exploring when to ask a patient about their wishes was also discussed at the Patient and Carer Participation Group. The general consensus was that it is acceptable to ask patients, but the timing of this needs to be sensitively considered. Ideally, the outpatient setting was seen as the most favourable environment as part of the patient's holistic assessment acknowledging that it is also acceptable to ask patients in discussions about dying.

A simple question “Do you carry a donor card?”may provide a good opening to discussion.

The next steps

The implementation of change is ongoing. Currently we are considering written information for patients and carers, reviewing the most appropriate place to record the patient's wishes within the patient's electronic record and formulating clear guidelines for clinical staff to refer to.
‘IT'S NOT OVER ‘TIL IT'S OVER…’ CREATIVE THERAPY AND PARTNERSHIP WORKING AT WILLOWBROOK HOSPICE
Authors: Scriven Lucy , Gallagher Lisa
Published: February 2014

Background & Aims

This creative therapy project raises awareness for the 2013 National Dying Matters Campaign. It's an experimental collaboration between hospice patient and artist Julie Williams, local artist Chantelle Townley, Advance Care Planning Facilitator, Lisa Gallagher and Holistic Therapist Lucy Scriven. Funding was kindly provided by St Helens Council. The artwork collage, entitled‘It's Not Over ‘Til It's Over…’depicts the richness of Julie's life using beautiful photographs, steeped in memories and personal story telling. Safety measures over the five outpatient sessions included: on-going discussion and emotional support, regular ‘time outs’ to reduce impact on lethargy, and positive reflection. The artwork was officially unveiled at a celebration, in essence a living wake, hosted at Willowbrook, attended by family, friends and the local press.

Results

Strengthened interdepartmental working within Willowbrook.

Stronger links for partnership working in the local community.

Promotion of the value of creative therapies for patients and families.

Promotion of the Dying Matters Campaign, and advance care planning within the hospice, locally and nationally.

Conclusion

This project has helped to raise awareness for the Dying Matters Campaign; it's also strengthened partnership working within the hospice and with the local community. Through artistic expression Julie was helped to share with the world everything she held dear and has been of great value in connecting positively with meaning in her life. Julie experienced the opportunity to develop her undiscovered artistic potential, and explore new coping strategies by moving away from denial into a place of acceptance. Importantly, through participation with the project, Julie actively engaged in her end of life care planning and inspired others to also engage. She also created a celebratory legacy that will now support her loved ones in their sadness and grief.
AN AUDIT TO EVALUATE THE ASSESSMENT OF SPIRITUALITY FOR PATIENTS ADMITTED TO WILLOW WOOD HOSPICE INPATIENT UNIT
Authors: Ragsdell Bethanie , Tapley Michael
Published: February 2014

Palliative medicine entails a holistic approach to patient care. Spirituality is an important component and should be explored with terminally ill patients. Studies have demonstrated a link between increased spiritual well being and a decrease in physical symptoms and psychological distress in terminal care.

An audit was undertaken to evaluate whether patient's spirituality was being assessed on admission to the inpatient unit at an adult hospice. The standard set for this audit was 80% and applied to both genders.

The method employed was a retrospective cohort audit of 30 patients, using their admission pro formas. The quantitative data was collected assessed by whether the spirituality section in the admission pro forma had been filled in, and gender.

From the data collected the results showed an average of 73.30% (n=22) of patients having a documented conversation about their spirituality and needs on the admission form. Further analysis highlighted that, when compared with the average, the percentage of female admissions that considered their spirituality rose to 89.47% (n=17). However for the men the results fell to 45.45% (n=5). The standard set in this audit was, on average, not achieved by the hospice. It is recognised that due to the limitation of a single cohort it restricted the opportunity for equal gender population samples.

The lower results for the male gender could be attributed to gender specific barriers to discussing spirituality and may be a training issue for the team members. Therefore the main recommendations of this audit were for further education for all members of the healthcare team. NICE guidelines advocate the use of the ‘Marie Curie's competency levels for Spiritual care’ as an educational framework. In addition a spiritual assessment tool,FaithActiveCopingTreatment plan (FACT), has been identified that may be very useful in directing these conversations.
THE USE OF DENSOSUMAB IN HOSPICE PATIENTS AND ITS EFFECT ON CALCIUM LEVELS
Authors: Harvie Karen , Isherwood Ruth , Fraser Judith
Published: February 2014

Background

Bone is a common site of metastasis for many primary cancers. Denosumab is recommended for the prevention of complications in patients with bone metastases from solid tumours other than prostate cancer (NICE guideline 2012). In patients with breast cancer it has been found to be more effective, both clinically and economically, than alternative treatment options. It is administered as a subcutaneous injection 4 weekly. Hypocalcaemia is a known side effect of Denosumab occurring in 5.5% of patients overall, although little is known about who is most likely to experience this and the timing and severity of hypocalcaemia in relation to denosumab injection.

Aims

To clarify prevalence and severity of the effect of denosumab on calcium levels in patients with breast cancer in our hospice population.

Methods

We identified all patients with breast cancer currently under the care of the hospice in all settings: in-patients, day hospice and community. A retrospective audit of case notes was performed to identify those who had received densosumab using a standardised data collection tool. Laboratory computer results system was used to detect subsequent changes in calcium levels.

Results

Forty-three patients with breast cancer were identified, 29 of whom have bone metastases. Six have received denosumab, 3 had hypocalcaemia following its administration- one patient had NCIC grade 2 hypocalcaemia, 2 patients NCIC grade 1. All were initially managed with high-dose oral calcium supplementation but one required subsequent hospital admission for IV calcium. In this patient persistent hypocalcaemia precluded further denosumab doses. All had previously tolerated bisphosphonates.

Conclusions

Our early experience with denosumab in this patient group suggests that hypocalcaemia may be more prevalent than thought. Further work is needed to clarify the timing of hypocalcaemia and need for blood monitoring and oral calcium supplementation.
AN AUDIT TO IDENTIFY PATIENTS AT RISK OF SEROTONIN SYNDROME AT TIME OF ADMISSION TO A SPECIALIST PALLIATIVE CARE UNIT
Authors: Luescher Kirsty , Powell Amanda , Isherwood Ruth , Wilson Anne
Published: February 2014

Introduction

Serotonin syndrome is a potentially life-threatening condition caused by overstimulation of serotonin receptors. Clinical manifestations include altered mental state, autonomic dysfunction and neuromuscular abnormalities. Basal levels of serotonin are higher in malignancy and recent drug alerts have implicated some opioids in serotonin syndrome. Many of the drugs used by palliative medicine specialists also have the potential to affect serotonin. The palliative care patient population may therefore be at increased risk of serotonin syndrome.

Methods

A retrospective audit was conducted of 100 consecutive patient admissions to the specialist palliative care unit. A data collection tool was designed to identify patients at risk of serotonin syndrome and if any of these patients demonstrated features of the condition.

Results

68 of the 100 patients audited were taking at least one drug implicated in serotonin syndrome, 34 patients were on two or more implicated medications. 59 of the 68 patients on a serotonergic medication had a least one symptom seen in serotonin toxicity, and 9 patients had at least 4 suggestive symptoms. None of the patients met existing diagnostic criteria for serotonin syndrome.

On admission 12 patients had a serotonergic drug added to their regimen and at 48 hour review, 4 patients had developed new symptoms suggestive of serotonin toxicity.

In all patients no documentation could be found that serotonin syndrome had been considered as a risk or possible diagnosis.

Conclusions

This study highlights a need for education about serotonin syndrome given its likely prevalence in the palliative care patient population and the potential for significant morbidity and mortality. Although the audit identified a significant proportion of patients were at risk of serotonin syndrome, clinical findings did not indicate definite diagnosis in any of these patients. A screening tool will now be developed to assist health care professionals in identifying at risk patients.
IMPROVING PREFERRED PLACE OF CARE OPTIONS FOR HOSPITALISED PATIENTS AT THE END OF LIFE
Authors: Saxby Carina , Wilson Christine , Katie Broadley
Published: February 2014

Background

Although most people die in hospital, most would prefer to die elsewhere. Ensuring that people's preferred priorities of care are achieved is a key aim for the End of Life Care Strategy.

Innovation

This CCG funded, joint initiative between Scarborough Hospital and St. Catherine's Hospice has enabled dying patients, regardless of diagnosis, to be transferred from the hospital to a nurse-led bed (NLB) in the last days of life if that is their preference.

Eligibility criteria (assessed by the hospital specialist palliative care team):

Estimated prognosis of one week

Defined ceiling of care including DNACPR

Patient's needs can be met by hospice nursing care in a more suitable environment

Following transfer (aim within 24hrs), patients were clerked and assessed daily by hospice nursing staff with support from the medical team as requested.

Evaluation

Retrospective analysis of consecutive referrals for NLB between 5/2/13 to 5/513 (assessed N=24; died awaiting transfer N=5; admitted N=18). The median age was 83, 10/18 had a non cancer diagnosis and 13/18 were not previously known to specialist palliative care services. The median length of stay was 1 day and the mean 5.8 days. Following ongoing assessment, 5 patients were transferred to a specialist palliative care bed. Feedback from relatives was very positive. Hospice nurses report that the initiative is empowering but carries a significant emotional impact.

Conclusion

This collaboration initiative has improved access to preferred place of care for dying patients regardless of diagnosis or previous eligibility for hospice care. Feedback has been very positive although the emotional cost to staff has been recognised. Improving same day access to NLB needs to be improved.
HOW A DIGNITY CARE INTERVENTION CAN IMPROVE CARE BY COMMUNITY NURSES TO PEOPLE IN THE LAST MONTHS OF LIFE
Authors: Johnston Bridget , Buchanan Deans , Papdopolou Constantina , Andrew Jane , Chochinov Harvey
Published: February 2014

Background

This study has developed, implemented and tested a complex intervention, the Dignity Care Intervention (DCI), providing an evidence based approach to providing person centred dignity conserving, palliative care to patients and their families receiving end-of-life care at home by community nurses (CNs).

Aims

The primary aim was to explore the feasibility and acceptability of the DCI from the patients' and carers' perspectives. A secondary aim was to explore the ability of the DCI to allow individual dignity related needs to be assessed and subsequently met, by community nurses.

Methods

A qualitative, evaluation design underpinned by the philosophy of Merlau-Ponty was employed for the evaluation of the DCI. Data collection included focus groups with CNs (39) at the beginning and end of the study; individual interviews with patients (30); informal carers (4). Interview data were analysed using framework analysis.

Results

The analysis of the interviews resulted in four theme categories and 16 subthemes. Experience of DCP; responding to my illness concerns, how illness affects me as a person and how illness concerns affect my relationships. Patients and family members identified that the use of the DCI by nurses beneficial, as they were given the opportunity to discuss concerns that might have not been raised otherwise.

Conclusions

The DCI helps CNs deliver psychosocial care, previously identified as a difficult area for CNs in practice. CNs use of the DCI helps patients receive individualised care, which directly relates to the issues they have identified as most distressing and/or important and their preferred measures to address these issues, allowing increased information and support to carers. The use of the PDI facilitated patient's communication of their dignity-related needs to community nurses, which highlighted increased satisfaction with the support they received.