bluuebunny/crossref_metadata_2025 huggingface dataset:
Questionnaire surveys of end of life experiences in three Dutch hospices
Authors: Koedam-Visser Ineke , Fenwick Peter
Published: March 2012

Background

A study of End of Life Experiences (ELEs) was carried out in Rotterdam Holland. These experiences seem to comfort the dying and prepare them for death.

Method

Thirty carers in three hospices who participated in the study were given a 5-year retrospective 42 item questionnaire. 1 year later the then prospective questionnaire was again give to any carers who remained at the hospices. The questionnaires were followed by a 1 h indepth recorded interview, a year apart.

Results

The results show that ELEs are not uncommonly reported. Deathbed visions were reported by over 70% of carers, deathbed coincidences by 50%, moving to a new reality before death by 55% and radiant light surrounding the body at the time of death by 55%. Interestingly terminal lucidity or ‘lighting up before death’ was only reported by 20% of carers.

Discussion

This paper will report the results of the Dutch study and compare them to those found in two hospices and a nursing home in England using the same questionnaire. In the interviews carers stressed the importance of ELEs in bringing comfort to the dying and particularly in being comforting to the relatives in their grieving. There are marked differences in the teaching of Dutch and English carers, 78% of Dutch carers had been trained in the nature of ELEs compared to only 6% in the English study. Both groups wanted more training in this area and asked for special courses and the production of pamphlets. Staff members in England found more difficulty in discussing ELEs between themselves than those in Holland.
A systematic review exploring factors supporting partnership working between generalist and specialist palliative care services: implications for older people
Authors: Gardiner Clare , Ingleton Christine , Gott Merryn
Published: March 2012

Background

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, hospital staff and others who have not undertaken specialist training in palliative care. Older people in particular are more likely to receive palliative care from generalists. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to identify factors which support collaborative working between specialists and generalists, and the implications of collaborative working for older people.

Aim

To explore factors that support partnership working between specialist and generalist palliative care providers, and the implications for older people and their families.

Method

A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until Jan 2011.

Results

Of the 159 articles initially identified, 24 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between different providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; co-ordinated care across a spectrum of care provision.

Conclusion

Multiple examples of good partnership working between specialist and generalist providers exist, however there is little consistency regarding how models of collaborative working are developed, and which models are most appropriate and effective. Little is known about the direct impact of collaborative working on older patients, and how collaborative working can enhance care for this group. Further empirical work is required to gain the direct perspectives of health professionals and older patients regarding collaborative working in palliative care.
Patient and carer reports of care in metastatic presentation of cancer of unknown primary origin
Authors: Hughes Philippa , Farrington Clare , Brooks David , Bath Peter , Noble Bill
Published: March 2012

Background

Patient and caregiver experiences of cancer of unknown primary (CUP) have been under-researched. Common challenges include diagnostic uncertainty, poor prognosis and difficulty in identifying this population.

Aims and methods

As part of a study to evaluate the development of a CUP team and pathway, we sought patient and carer viewpoints. Patients presenting with metastases of unknown primary origin were invited to complete questionnaires on symptoms, quality of life and care and to participate in semi-structured interviews, during two 6-month periods. A retrospective survey of all bereaved caregivers was conducted, using the VOICES (Views of Informal Caregivers-Evaluation of Services) questionnaire.

Results

During two 6-month periods, 88 patients presented with CUP. Median time from presentation to death was 40 days. VOICES was sent to 71 bereaved carers, and 26 (36.6%) responded. Both good and bad care were reported, with primary care settings and hospital settings demonstrating variable practice in communication, control of pain and breathlessness and quality of care. Reports of hospice care were uniformly good. Where carers reported positive experiences of death at home they also reported effective home- care support. Of those patients well enough to be approached, 10 completed questionnaires and four were interviewed. Questionnaire data indicated a considerable symptom burden for some, particularly weakness/tiredness and pain. Interview themes included appreciation of the quality of care received, frustration at waiting for investigations and results, confusion as to who was leading care, distress at communication of bad news and difficulty in accepting the diagnosis of cancer.

Conclusions

This small study highlights the distress experienced, but also demonstrates that good care is achievable. Palliative care has a particular contribution to make not only in optimising symptom control, but in addressing key issues associated with this cancer presentation: co-ordinating investigations and care, and providing skilled communication where diagnosis is uncertain.
What do patients with advanced incurable cancer want from the management of their pain?
Authors: Gibbins Jane , Bhatia Rebecca , Forbes Karen , Reid Colette
Published: March 2012

Aims

Pain is one of the most frequent symptoms among patients with metastatic cancer. Measuring the efficacy of the management of pain is challenging. There is currently little in the literature to inform us how patients with advanced incurable cancer determine whether their pain is controlled or not. This study aimed to explore how these patients describe the control of pain.

Methods

A qualitative study using face-to-face interviews with patients who had advanced incurable cancer and experienced pain. Data was analysed using the principles of the grounded theory approach.

Results

Twelve patients were interviewed until data saturation was reached; four themes emerged; ‘maintaining role, self and independence’, ‘compromising/modifying expectations’, ‘role of healthcare professionals’ and ‘meaning of pain in context of illness’.

Conclusion

Patients determined if their pain was ‘controlled’ by whether or not they were able to perform activities or tasks, and maintain relationships with family or friends, which determined themselves as individuals. Participants did not find the use of numerical rating scales useful or meaningful in determining whether they were able to perform these activities or maintain a sense of control and independence. Goal setting for patients with advanced cancer pain may be useful to allow patients to determine what they want from the ‘management’ of their pain. These patient derived outcomes could be useful in clinical practice and research.
Symptom management and its barriers among patients with terminal advanced cancer in Thailand
Authors: Nilmanat Kittikorn , Promnoi Chantra , Phungrassami Temsak , Chailungka Pachariya , Tulathamkit Kandawasri , Noo-urai Prachuap
Published: March 2012

Aims

Effective symptom management is important part of end of life care. It is aimed at improving the quality of dying. The findings presented in this conference are taken from a larger project, the aim of which was to explore the experience of patients living with terminal cancer in southern, Thailand. This presentation reports on one of the main themes under this study's investigation; symptom management and its barriers.

Method

A longitudinal qualitative study was conducted. Fifteen patients who had been diagnosed with terminal cancer and 20 caregivers were recruited. Series interviews and observations were employed. Content analysis was applied.

Findings

The common symptoms perceived by patients as most burdensome and distressful were lack of energy, anorexia, pain and dry mouth. Family played a key role in managing symptoms for the dying patients. Symptom management strategies used by family caregivers focused not only on searching for cure by using complementary therapy, but also on managing everyday symptoms based on their beliefs and experiences. The barriers to manage symptoms consisted of attitude and concern about medication and its side effects, lack of knowledge about symptoms and symptom management, patients' wills to live, limited access due to the services system, and communication gaps among persons involved in care (doctor-care giver, care giver-care giver, patient-care giver).

Conclusion

The finding from this research will provide a picture of experiences of patients with terminal advanced cancer. Awareness of effects of perceived barriers to symptom management will guide healthcare providers to develop effective interventions to improve quality of life among these patients.
Investigation of the family approach to weight and eating for families affected by cancer cachexia
Authors: Hopkinson Jane
Published: March 2012

Background

Weight loss and anorexia are symptoms of cancer cachexia syndrome. They are experienced by up to 80% of patients with advanced cancer and can be distressing for both patients and their family members. A Post Doctoral Fellowship funded by Macmillan Cancer Support (2008–11) has enabled the development of the first psycho-educational family intervention for cachexia-related problems: the Family Approach to Weight loss and Eating (FAWE).

Aim

To report a Phase I proof of concept study of FAWE, with scope as defined by the Medical Research Council's guidelines for developing a complex intervention.

Methods

The study was a mixed-methods investigation of the acceptability and feasibility of FAWE, including observation of its benefits and potential harms. The study protocol was completed by 16/20 purposively selected patient-family carer community-dwelling dyads in the South of England in 2010/11. Research interviews, which included the FAWE intervention, were of 30–135 min duration (median 72 min) and conducted in the dyads' homes. A User Involvement Group (consumers, dietitians, clinical psychologists, nurses specialists, family therapists and academics) were engaged across the course of the study, so that expert opinion informed data analysis and refinement of the FAWE intervention.

Results

The patient-family carer dyads comprised seven female and nine male patients (age range 41–84 years) and their carers. The techniques used in the three step FAWE intervention were observed to facilitate the intended talk, without apparent adverse consequences. Patient-family carer dyads were found accepting of and to express satisfaction with a nurse delivered intervention that provides both information about eating well with cancer cachexia and that aids perspective taking, talk about food and feelings and talk about how family members help each other with cachexia-related problems.

Conclusion

FAWE should now be tested in a pilot trial for effect on emotional health outcomes in patients and their family carers.
An investigation into leadership in nursing and children's nursing within children's palliative care
Authors: Lewington Elizabeth , May Jessie
Published: March 2012

Leadership within Children's Nursing (Myers 2005), has been acknowledged as a high ‘priority within health and social care’, organisations and services, (Bennett 2004 p 28). This priority was re-enforced by two very important inquiry reports, namely The Inquiry into the Management of Care of Children Receiving Complex Heart Surgery at the Bristol Royal Infirmary, Kennedy (2001) and The Victoria Climbie Inquiry Report, Laming (2003). There has been technical advances in medical treatment, and the nursing care for sick children, Winter and Tear (2002), and this has lead to the development of children's and young people's palliative care services. These developments have influenced the expansion of specialist charitable organisations providing children's palliative services within the UK. A review of current literature on leadership in nursing, children's nursing and children's community nursing concluded that nurses present numerous leadership traits and styles. During this literature review only several articles presented research in nursing leadership. As a result of this need for research within nursing leadership and also within Children's Palliative Care Services the aim of this research study was to investigate leadership in Nursing within Children's Hospice Services, and to answer the question: – ‘How do senior nurses working within Children’s Hospices construct the meaning of leadership within their working role'? This qualitative study used a data collection narrative of story telling. This was compiled by recorded interviews using a theoretical sample recruited from the national organisation of Children's Hospices UK, (Silverman 2010, Searleet al2004). The results from this investigation showed that the Senior Nurses presented numerous numbers of leadership styles and traits with the majority presenting the most frequently used leadership style of being commanding. However there was no consensus demonstrated in leadership traits, the results showed, that being positive, supportive and influential were all important.
Documentation of cardiopulmonary resuscitation decisions at a busy hospice inpatient unit
Authors: Kay Samantha , Babburi Aruna , Castanheira Trisha , Plenderleith Steve
Published: March 2012

Background

In response to the guidelines issued by the Resuscitation Council relating to making decisions about cardiopulmonary resuscitation (CPR), the National Council for Hospice and Specialist Palliative Care Services and the Association for Palliative Medicine of Great Britain and Ireland produced joint guidance for palliative care. This included the recommendation that written information be made available to patients about the hospice CPR policy, how decisions are made about CPR and the facilities available at the unit.

Aims

To identify whether all patients had received the hospice CPR information policy and whether the resuscitation component of the admission clerking had been fully completed. To identify how many CPR decisions are being discussed with the patient and in those situations where it is the clinician making the decision, whether reasons are documented in the medical notes explaining this decision.

Methods

The medical notes of all inpatients at Birmingham St Mary's Hospice were analysed prospectively over a 2 week period, when bed occupancy was greater than 60 per cent.

Results

All patients received a patient information booklet regarding the hospice resuscitation policy and there was high compliance (94%) of accurate documentation around CPR decisions. However, 82% of these decisions had been made by the clinician without discussion with the patient and only two patients (12%) had actually clearly had a discussion with the admitting doctor and had chosen themselves not be for resuscitation.

Conclusion

If a patient is in the terminal phase of their illness, CPR is likely to be futile and the patient has no realistic choice to make. However, this audit highlighted the need for more discussions with patients around their CPR status and documentation of this in the medical notes, even if this is to make patients aware that decisions are being made on their behalf and invite discussions if desired.
Multi-disciplinary team assessment of prognosis in palliative care
Authors: Grogan Eleanor , John Justina
Published: March 2012

Background

Predicting patient prognosis is a challenging clinical decision and some studies report that clinicians often overestimate patient survival1. One important aspect of predicting prognosis is ensuring that patients are allocated the appropriate resources as part of their management, including continuing healthcare placement if appropriate. A continuing healthcare placement is funded via NHS resources and has set criteria including that all patients referred should have an expected prognosis of less than 3 months. Patients with a longer expected survival do not usually receive full NHS funding if transferred to a care placement.

Aims

Audit of patients transferred from an NHS inpatient specialist palliative care unit (PCU) to a continuing healthcare funded placement to assess whether (1) prognosis was accurately predicted using multidisciplinary team expertise on the PCU and therefore (2) NHS funding was correctly allocated to these patients.

Conclusion

86% patients transferred from the NHS inpatient specialist palliative care unit (PCU) to a continuing healthcare placement lived for less than 3 months. Some of these had a survival significantly shorter than the predicted 3 months but it was difficult to determine from the medical notes if, on retrospect, this would have been expected. This in turn raises the issue of whether it may have been in the best interest of some of these patients to have remained on the PCU.
Planning ahead
Authors: Taylor Helen , Pearce Jonathan
Published: March 2012

The Hospice of the Valleys has long since recognised the importance of patients dying in their preferred place of care; however until recently there was no formal documentation. The document developed, between myself as a clinical nurse specialist and a social worker, is entitled ‘Planning Ahead’ which allows patients and families to discuss and plan future care. The Gold Standards Framework has recently commenced within a local GP practice, which the author is assigned to. One important component is that of planning for the patients identified within the framework, and planning ahead for their care. The introduction of the ‘Planning Ahead’ document would empower the patient to make decisions about what their wishes are at end of life, and their preferred place of care. This document is also a form of communication for other health professionals to be aware of patient's choice. The plan is to present the Planning Ahead document at this conference, and subsequently a study is to be undertaken as part of the clinical nurse specialist dissertation for the MsC in Advance Practice in palliative care. The study will look into the effectiveness of the documents use within our organisation.
The importance of high facilitation when implementing end of life care tools in care homes
Authors: Hockley Jo , Holman Deborah
Published: March 2012

Background

Care homes are increasingly places where older people live and die. The end of life care programme promotes the use of end of life care tools in care homes; however, changing the relatively weak culture of care homes where there is high turnover of staff, a majority of untrained carers, and a lack of multi-disciplinary working, is complex. The Care Home Project Team at St Christopher's Hospice, London became a Regional Centre for the delivery of the GSFCH programme in October 2008. Since this time 132 care homes have completed this programme of which 53 nursing homes are from our own locality.

Methods

Four FTE palliative care nurse specialists facilitate the implementation of end of life care tools across five PCTs (population 1 386 076). The team uses high facilitation to empower nursing home staff and visit their specified nursing homes 2/3 times a month to role model monthly coding meetings, advance care plan discussions, LCP training etc. Emphasis is given to supporting staff with monthly reflective-debriefing sessions following a death. Managers collected preprogramme data on all deaths in order to compare to subsequent years.

Results

Since 2008, inappropriate hospital deaths have been reduced by 16%. In 2008, 57% residents across 19 nursing homes died in the homes compared to 73% residents across 53 nursing homes in 2010. Sixty per cent of nursing homes (32/53) have gained accreditation compared to a national average of 10%. Commissioners now fund all members of the Care Home Project Team.

Conclusion

High facilitation of evidence-based tools in end of life care can develop a palliative care culture in nursing homes. However, sustainability is not without cost. Our sustainability programme consists of nursing home cluster groups within each PCT. Each cluster covers 3 levels: new staff; 4-day training package for regular nurses/carers; action learning for managers.
Macmillan end of life discharge pilot project at the James Cook university hospital (JCUH)
Authors: Taylor Yvonne , Walker Jane , Hunter Noeleen , Harris Andrea , Nicholson Alexander
Published: March 2012

Background

Current end of life initiatives emphasise the importance of achieving the preferred place of care for patients approaching end of life. National survey data suggest 50–60% patients would prefer a home death but data for South Tees indicates that only 22% of patients achieve this (2007–2009). A new service was therefore developed to offer consultation and support to effect a safe, coordinated and patient-focused discharge to every patient on the end of life care pathway (EOLCP) whose preferred place of care was not JCUH.

Aims

To increase the awareness, expertise and confidence of the host clinical teams in discharging these complex patients.

Methods

Funding was secured from Macmillan Cancer Support to employ a Discharge Sister with administrative support. During a 3-month development phase, project promotion and stakeholder liaison (within and beyond the acute hospital) was prioritised. Thereafter every ward was contacted every day to offer the service to patients on the EOLCP. Discharge packs comprising discharge prescription, medication administration charts, patient/carer information and discharge checklist were designed for every community care location served by JCUH as a tertiary centre.

Results

In the first 12 months, 111 dying patients were discharged home via the project. Awareness and confidence of the discharge logistics process continue to increase among ward staff but negotiating the plan seems to require the greater experience of the Macmillan discharge sister and specialist palliative care team (SPCT) colleagues.

Conclusion

A bespoke discharge pathway and experienced facilitation secures rapid discharge of a complex vulnerable patient group. Although there are no previous data for comparison the ‘clinical memory’ of the SPCT (who previously supported these discharges in an ad hoc fashion) suggests significantly increased activity. The authors conclude that more patients are achieving their preferred place of death. The work continues and is subject to independent evaluation.
Waste not want not: LEANer thinking in specialist palliative care units
Authors: Lew Eva , Gupta Srirupa , Hare Caroline , Flynn Jackie , Cobbin Mark , Glover Jan
Published: March 2012

Background

The ability of specialist palliative care units to provide high-quality, patient-centred and cost-effective services within the current economic climate is crucial for both commissioning of services and patient satisfaction.1 Lessons in improving productivity and quality, while minimising cost, can be learned from adopting ‘LEAN’ thinking.2 In essence, ‘LEAN’ is an improvement approach which seeks to improve patient flows and eliminate inefficiencies or wastes which are non-value added for the patient, while being open and flexible to change.3

Methods/Aims

Farleigh Hospice engaged external consultants to facilitate a 3 day LEAN workshop to examine the patient pathway from ‘referral to bereavement.’4 Only ‘frontline’ staff participated, for example, Macmillan Nurses/Day Hospice, Triage/Discharge, Administrators/Receptionists, Doctors, Physiotherapists/Occupational Therapists, Psychosocial Team, Bereavement and Carers' Services. Using process mapping investigation, participants visually analysed current pathway steps in 5 areas: referral; initial assessment; intervention; discharge; and, bereavement. Non-value adding activities within the current process were identified. Subsequently, a redesigned ‘future state’ for services was envisioned resulting in immediate (‘Just Do It’ projects) and future strategic improvement projects. All redesigned processes were measured for quality, cost and speed of delivery response. Participants committed to long-term project review and progress monitored within further facilitated sessions.

Conclusion

Despite the on-going process, benefits already include: • Empowered enthusiastic staff with increased likelihood of sustained improvement • Less resistance to change • Improved acceptability of innovation • Improved team working across and within departments • Increased time for patient contact Recommendations: ‘LEAN’ is an effective productivity/quality improvement tool which can be successfully applied within SPC units.
An audit of the prescribing, administering and monitoring of oxygen therapy within a hospice
Authors: Foster Gillian
Published: March 2012

Background

Following the publication of the Executive Summary of the British Thoracic Society Guideline for Emergency Oxygen Use in Adult Patients 2008, a local hospice guideline for the prescribing and use of oxygen had been developed for that setting and patient population. Consequently new charts for prescribing, administering and monitoring of oxygen therapy were produced for the in-patient unit.

Aims

The charts were audited to ensure that oxygen was prescribed and administered safely and appropriately and that inappropriate monitoring of oxygen saturation levels for patients approaching end-of-life was avoided.

Conclusion

Fifteen oxygen charts were audited in each audit cycle. Medical staff usually judged appropriately when a patient should or shouldn't have a target oxygen saturation indicating that no unnecessary and inappropriate requests for monitoring were taking place. However on the few occasions when this was indicated it was not usually measured. A small number of patients were having oxygen saturations measured by nursing staff when not clinically indicated. Greater attention was needed in considering oxygen as a drug that was required to be prescribed and its administration recorded. The results were disseminated through the clinical team and the charts amended to highlight who was responsible for completing each section of the chart. An additional prompt in the main drug chart was added. The audit was repeated after a period of 6 months. There was a significant improvement in signing and dating an oxygen prescription from 60 to 100% of charts suggesting that oxygen was now being regarded as a drug by clinical staff. Nursing staff were now usually only checking oxygen saturations if indicated – enhancing patient safety yet avoiding unnecessary and inappropriate checks. There was a large improvement in nursing staff recording the delivery system and flow rate for oxygen at drug rounds (19–61%).
Use of Oxycodone and association with renal function
Authors: Ackroyd Rajeena , Aman Sanisah
Published: March 2012

Background

Oxycodone is a semisynthetic opioid, generally prescribed in patients who do not tolerate morphine. There has recently been concern that oxycodone is being used more frequently which would have cost implications. Regional guidelines suggest that oxycodone should be considered when patients have a GFR of less than 50.

Aims

The aims of the audit were to see when oxycodone is prescribed by the specialist palliative care team and is oxycodone prescribed more frequently in patients with impaired renal function

Method

Retrospective audit of specialist palliative care notes of all deaths between November–December 2010 (inclusive).

Results

Sixty patient's notes were analysed The average eGFR for all patients (n=60) on referral was 70 17 (28%) patients had an eGFR of less than 60 (CKD stage 3–5) on referral. Thirty-three patients were on opioids on referral and 20 patients were commenced on them. Ten patients were either commenced or switched to oxycodone 2 patients were commenced oxycodone due to a previous rash with morphine (eGFR 30.7) and due to concern regarding renal function (eGFR 49.6), 8 patients were switched to oxycodone: the commonest reasons being renal impairment and drowsiness. The average eGFR for all patients on oxycodone (n=10) was 51. For the patients who remained on morphine (n=40) the average eGFR was 72

Conclusion

The majority of patients tolerate morphine reinforcing that it should be the first choice in the majority of patients. There is limited evidence for the use of oxycodone in renal impairment. For patients who do have renal impairment, particularly with eGFR less than 50 it may be appropriate to consider oxycodone when fentanyl or methadone are not suitable. Further evidence on its use in renal impairment would be useful.
Anticoagulation in the Hospice Setting
Authors: Steel Kim , Leith Marion , Brooks Lindy , Butcher Lowrie , Hill Jenny , Waterman David , Lomax Philip
Published: March 2012

Background

In March 2007, NPSA issued a safety alert regarding the oral anticoagulant warfarin. In palliative care the focus of care is on quality of life and the burdens and benefits of medications require consideration. Following the NPSA alert St Ann's Hospice undertook an audit to examine its practice. The first audit was undertaken from February 2008–August 2008; this audit was then extended to August 2008–August 2010.

Method

Patients were identified through an INR history obtained from the local laboratories. A retrospective case note audit was undertaken. The standards incorporated in the NPSA audit were used. These consider four key areas: (1) admission history, (2) dosing warfarin, (3) monitoring and prescribing and (4) safe discharge of patients

Results

Twenty-five cases were considered. The majority were anticoagulated for either VTE (14/25) or atrial fibrillation (8/25). 7/25 patients suffered adverse events of which bleeding accounted for 5/25. 16/25 had their warfarin stopped during their admission (2 at the point of admission); 6/16 were commenced on low molecular weight heparin. 47% of INRs were in the therapeutic range. When a dose was altered INRs were checked on average 4-5 days postchange. 8 patients were discharged from the hospice on warfarin, 2/8 had INRs within the therapeutic range and poor communication of follow up, target INR and last INR to the community was found.

Conclusion

In palliative care the benefits and burdens of all medicines needs to be considered. The benefits of anticoagulation in patients with advanced disease are unknown but this audit shows there can be significant risks. To minimise these risks requires a robust approach. In response to this audit the hospice instituted a compulsory e-learning for prescribers, a new oral anticoagulant policy and, due to the infrequency of patients on warfarin, a pharmacy system to highlight patients.
Parental perceptions of end-of-life care on paediatric intensive care units in Brazil
Authors: Lago Patricia , Halal Gilda , Piva Jefferson , Nilson Christine , Halal Michael
Published: March 2012

Objective

Assess the perception of parents of patients who died in a Pediatric Intensive Care Unit (PICU) about the care given by health staff in the moments preceding death.

Methods

Exploratory-descriptive study with a qualitative approach.

Settings

Two PICU (Hospital Sao Lucas, and Hospital de Clinicas de Porto Alegre).

Subjects

15 parents of children who died from April to September 2008. Data collection was performed through three steps: (A) The researchers contacted the parents through a phone call, (B) At the hospital, the doctors who assisted the children clarified doubts about the therapy offered, results of exams and decisions regarding end of life, (C) Semistructured interview, recorded in audio, was carried out by researchers (not participated of the care of children). Data analysis was performed using the technique of thematic content analysis.

Results

The analysis resulted in four categories: (A) the moment of death in the PICU; (B) talking with the attending physicians – possibility of understanding; (C) parental involvement in decision making in the PICU; (D) parental participation in research – moments of unburdening and the possibility of satisfaction. The results show that parents lack a peaceful environment where they can adequately carry out the goodbyes at the time of death of their children. They emphasised the solidarity provided by the nursing staff at this point and the poor involvement of the medical team. The opportunity to revisit the process of their children's death was considered positive. Parents felt that they did not have an effective participation in the end of life decisions.

Conclusion

Research shows that the difficulty of communication between health staff and parents is a factor that impacts negatively on the decision taking and grieving processes. Moreover, it stresses the importance for the parents to reassess the moment of the children's death with health professionals.
Fulfilling a vision – a new model for therapy services at a hospice in west Sussex
Authors: Biggerstaff Barbara
Published: March 2012

Background

Palliative rehabilitation encompasses a number of therapeutic interventions that help patients adapt to the functional changes imposed by their illness with an aim at improving quality of life. The provision of therapy services has long been seen as an essential part of holistic hospice care. This abstract lends further support to this view by highlighting an innovation in the delivery of therapy services undertaken by a hospice in West Sussex. The hospice's overarching vision was to provide all patients under its care with the opportunity to receive a specialist, responsive and equitable occupational therapy and physiotherapy service. Prompted by an extensive service expansion and a paucity of qualified therapists in post, the hospice embraced a different model to help achieve this.

Aims

Key aims of the new model were: (1) formulation of a separate therapy team with a team leader at the helm to develop and run this new service (2) promotion of close partnership working with generalist community therapy teams with a focus on education (3) development of an outpatient service across both hospices sites including creative use of self-help groups (4) collaborative working with primary care, demonstrated in the running of a Breathe Easy clinic outreached to a local GP practice.

Conclusion

Team members were recruited and a time line for service activity was drawn. Clear therapy pathways, including criteria for referral and evaluation were also compiled for inpatient, day hospice and community services. Challenges were ensuring that only those patients with specialist therapy needs accessed the service and with referrers embracing the benefits of patients being seen as an outpatient as opposed to home. This evolving service has proved to be very popular and in the future it will need to be responsive to anticipated changes initiated by GP commissioning and increasing patient need.
Metastatic spinal cord compression in Newcastle upon Tyne NHS Foundation Trust
Authors: Gunn Hannah
Published: March 2012

Background

NICE guidelines regarding the diagnosis and management of metastatic spinal cord compression (MSCC) were issued in November 2008.1 These guidelines were incorporated into the process of National Cancer Peer Review Programme for Acute Oncology in 2011.2

Aims

Prospective data collection regarding number of patients, as well as source and time of referral of patients in NuTHFT with suspected MSCC over a 6 week period. The subsequent audit will look at standard of management of suspected MSCC patients in NuTHFT against national guidelines.

Method

MSCC audit group established from leads of department in oncology, neurosurgery, spinal orthopaedics and palliative care.

Survey

An online form on the NuTHFT intranet for the initial survey. which was completed by clinicains across involved specialites. Data was then analysed and cross-referenced with various other sources of data collection. Audit: The patients identified by the survey were used as a cohort to audit current NuTHFT practices against national guidelines for management of suspected MSCC.

Results

Survey

55 patients were identified by the survey. Pain and neurological deficit were of equal prevalence as presenting feature. 45% of referrals came from hospitals other than NuTHFT, 31% were from within NuTHFT and 14% were from primary care. 47% were referred during working hours and 42% were referred out of hours. 70% of patients identified through varies sources were recorded on the online survey.

Audit

Data will be presented Conclusion: Management of MSCC poses a management challenge given the diversity of specialities involved and the complexity of the co-ordination of management of such patients. Use of an online form can centralise data collection and provide significant amounts of data.
‘Spot’ audit of strong opioid prescribing at Musgrove park hospital, Taunton
Authors: Michaels Katherine , Jayaraman Smita , Lagan Sarah
Published: March 2012

This audit examined compliance with best practice within a busy district general hospital (750 beds) on 1 day. Audit Measures: • First line strong opioid, morphine-exceptions, renal impairment, documented sensitivity • PRN prescribing, 1/6 of the regular dose and same compound (where applicable), dosing interval ‘up to hourly’ and specified indication of use- exception, renal impairment • Regular laxatives • Antiemetic prescription at least PRN • Prescription compliant with Trust policy Adult inpatients prescribed regular strong opioid analgesia, irrespective of route, were included in the audit. An audit proforma was completed with reference to the patient's medical records and prescription chart.

Results

• 100% compliance, adherence to local Trust prescribing policy • Only 4% (29/750) of adult inpatients on the audit day were prescribed regular strong opioids, in all cases for pain relief. This figure was lower than expected and begs the question, is pain poorly assessed/poorly managed within the acute hospital environment? • 68% compliance overall with prescribing morphine first-line, 78% for those prescriptions started within the hospital • Higher ratio of prescriptions for patients with non-malignant disease- increased patch prescribing (buprenorphine, fentanyl) in this patient group • 21% (6) had no breakthrough analgesia prescribed, 65% of prescriptions met the standard, those that did not had too low a PRN dose prescribed • Mean, median and mode doses (equivalent morphine doses) 132, 60, 60mgs respectively • 89% of patients with impaired renal function had an appropriate 2nd line strong opioid prescribed but poor compliance with PRN prescribing in this patient group • Regular laxatives were prescribed in 48% patients while antiemetics were prescribed in 72% As a result of this audit practical prescribing guidance cards are being issued to all junior doctors with the plan to re-audit in 1 year's time.
Merseyside and Cheshire palliative care network audit and guidelines for managing breathlessness
Authors: Jeffries Clare , Oates Susan , Ledson Martin , Bonwick Helen , Marley Kate
Published: March 2012

Background

Merseyside and Cheshire Palliative Care Network (MCPCN) Audit Group was established in 1995. It is a multi-professional group composed of individuals working in palliative care across eight integrated care networks (ICN) in community, hospital and hospice settings. Its objective is to develop standards and guidelines through audit, literature review, expert opinion and group consensus to support healthcare professionals working in palliative care in the region. Breathlessness is a common symptom encountered in palliative care in patients with both malignant and non-malignant conditions.

Aims

To audit the networks performance against previously developed MCPCN standards on managing breathlessness in advanced disease and revise these standards and guidelines.

Method

Previously developed guidelines and standards were reviewed. Literature reviews on pharmacological and non-pharmacological treatments for breathlessness in advanced disease were undertaken. Clinical nurse specialists and doctors working in palliative care across the region were sent an e-mail with a web link to an audit proforma to complete for patients they managed with breathlessness over a 3 month period. Literature review, audit findings and review by external expert was presented to the MCPCN and consensus guidelines and standards reached.

Results

The treatment of 106 patients from hospital, hospice and community settings across 7 of 8 ICN was audited.

Conclusion

Updated MCPCN guidelines on the use of pharmacological (opioids, benzodiazepines, corticosteroids, nebulised medication, oxygen) and non-pharmacological interventions were developed with evidence and recommendations graded. Revised MCPCN standards include: •Reversible causes should be identified and treated where appropriate. •Consider a trial of relaxation therapy and/or anxiolytics in patients with anxiety and breathlessness. •All patients should have access to non-pharmacological interventions. •Diamorphine and morphine are opioids of choice in patients unable to swallow unless already taking an alternative strong opioid. •Oxygen should be prescribed. •Pulse oximetry should be used; prescribe oxygen only if the patient is hypoxic.
An audit of blood transfusion in palliative care
Authors: Snell Kalyani , Churm Deepta , Hughes Andrew
Published: March 2012

Background

In a palliative care setting, to whom should we offer blood transfusion and when should we stop? Is there consensus regarding the best care for our patients? Transfusion should be based on an assessment of symptom management and patient wish. The British Committee for Standards in Haematology (BCSH) guidelines' acknowledge complexity and suggest the decision to transfuse is largely based on the clinical situation. Gleeson (1995) demonstrated that cancer patients showed a significant improvement in strength and well-being with blood transfusion (pretransfusion Hb ranging from 4.9–10.7 g/dl). No previously published audit has looked at regional practice among both haematologists and palliative care physicians.

Aims

To provide a snapshot of blood transfusion practice in the palliative care setting within the Northern Region (UK). Is current practice in keeping with guidelines?

Methods

An anonymised questionnaire was sent to regional haematology (N=33) and palliative care (N=55) physicians. The questionnaire was based on a fictional scenario involving a lady with metastatic breast cancer and symptoms of anaemia (fatigue and dyspnoea). The respondents were asked to indicate whether transfusion would be offered in differing clinical circumstances.

Results

98% of respondents offered transfusion if the symptomatic patient had a Hb of 8 g/dl. 73% offered transfusion with an Hb of 10.5 g/dl. 3% would offer transfusion with an Hb of 8 g/dl, but no symptomatic benefit with previous transfusions. There was general consensus between palliative care and haematology for these decisions. 42% would transfuse a patient with a prognosis of days to weeks, an Hb of 8 g/dl and previous symptomatic improvement with blood transfusion. A greater proportion of haematologists would transfuse in this circumstance.

Conclusion

There is general consensus to use blood transfusion for symptom control in a palliative care setting. Differing opinion arises when progonosis is shorter. Current practice is in keeping with BCSH guidelines.
Symptoms and quality of life in children with incurable central nervous system (CNS) tumours
Authors: Brook Lynda , Walker David , Grundy Richard
Published: March 2012

Background

Symptoms in children with incurable central nervous system (CNS) tumours are frequently managed with corticosteroids but 33% of children prescribed corticosteroids experience adverse effects and the overall effect on quality life is unclear.

Aims

To determine the views of parents of children with incurable CNS tumours about symptoms, quality of life (QOL) and the benefits and problems associated with steroids.

Methods

Semistructured interviews with the principal care giver of six children who died from a CNS tumour. Parents were asked to describe their child's symptoms, QOL and benefits or adverse effects of treatments used to control symptoms. Verbatim transcripts were analysed using Thematic analysis.

Results

Six key themes were identified: getting the diagnosis, treatment decisions, side effects of illness and treatment, adapting to the illness, facing death and professional support. The decision to stop curative treatment was influenced a number of factors including lack of efficacy or worry about the effects of the treatment on QOL. Children varied in the side effects that they had from the illness and its treatment. Sometimes, side effects from treatment were hidden by the effects of the disease, or were perceived as minor. Steroids were often perceived to have minor or positive side effects. Despite the need for parents to maintain a sense of normality for the child, both they and the child were often acutely aware of the limitations brought by the disease, especially when compared with other children. A rapid deterioration in the child's condition often alerted parents to end of life. Older children were usually aware that they were dying, even when parents tried to keep it from them, and they made plans for after their death.

Conclusions

QOL is an important influence for treatment decisions in children with CNS tumours during palliative care. Symptoms and adverse effects of treatment appear less important than maintaining normal day-to-day activities.
Audit of the use of ‘just-in case’ boxes as part of a local enhanced service agreement for end of life care
Authors: Westwood Debbie , Bagshaw Kerry , Curtis Claire , Blaine Felix
Published: March 2012

Background

The local enhanced service for end of life care (EOL) was started by Worcestershire Primary Care Trust in 2009, with the aim of developing good practice and improving EOL care. GPs were asked to sign up to and fully adopt the Gold Standards Framework (GSF). Access to palliative care medications and proactive management of symptom control are key components of GSF, and to support this ‘just-in case’ boxes were launched in April 2010. It was anticipated that the use of the boxes would avoid the distress caused by poor access to medications in out of hours, by anticipating symptom control needs and enabling availability of key medications in the patient's home.

Outcomes

To assess the success of this initiative a 6 month audit was undertaken between May and October 2010.

Results

A total of 66 boxes were placed in patients' homes. Fifteen of those boxes were not used. No patients were transferred into the acute trust (one patient was transferred to a care home), meaning that 65 people remained in their own home at time of death, with 48 of those patients' end of life care being supported by provision of anticipatory medication. Only 6% of the responses reported any resistance to use of the boxes, either by the patient or their family. Provision of the boxes improved symptom control in 55% of the cases, and 89% of the boxes were reported as containing the most appropriate drugs. We estimate an approximate cost saving of, at least, £69,140 was made. This was calculated by multiplying the number of times the provision of the just-in case box prevented use of a further healthcare service by the average cost for that specific episode of care. This can be compared favourably to the cost of providing the drugs, being £3,346.