bluuebunny/crossref_metadata_2025 huggingface dataset:
What evidence is being used to inform clinical practice and palliative care? A comparison between Sub Saharan Africa and the UK
Authors: Jack Barbara , O'Brien Mary , Mwebessa Eddie
Published: March 2012

Background

The internet ensures rapid access to information that nurses can use to inform clinical practice. In the western world, guidelines, protocols and pathways are all readily available and driven by the promotion of evidence based practice. In the developing world where internet access is at best patchy and access to journals poor, nurses are limited in what information they can obtain.

Aims

To explore what registered nurses perceived to be the best evidence to use to underpin clinical practice in the UK and Sub Saharan Africa.

Method

30 registered nurses from two groups, one in the UK (17) and Uganda (13), undertaking a research methods module as part of their degree in health studies /palliative care, individually ranked the statements of the hierarchy of evidence in order of strength. All respondents were based in clinical practice and had been registered nurses for between 3 and 32 years. Data was collected on the commencement of the modules, in 2011.

Results

Only one student (from Uganda) got all elements of the hierarchy of evidence correct. 29% (5) of the UK and 33% (5) of the Ugandan students correctly scored the highest level of evidence. Yet, 88% (15) UK and 38% (5) Ugandan, scored level 5 (opinions from respected authorities as the highest level of evidence.

Conclusion

In both countries it appears that the opinion from respected authorities is influencing clinical practice generally and also within palliative care. This poster discusses all of the results and suggestions are made for the findings. However it is essential that researchers are cognisant of this fact when considering the dissemination of research findings.
What are the impacts of communication skills in a foundation degree for support workers?
Authors: Faull Christina , Phelps Kay , Handsley Stephen , Wale Jane , Noguera Anita
Published: March 2012

Background

Unregistered health and social care workers arguably provide the bulk of end of life care. They spend more time with people than trained staff, undertake more personal care and are often seen as the closest ally and friend by the people who may entrust them with unique confidences and share fears and hopes. Eleven support workers taking a 2 year foundation degree in palliative and supportive care participated in an evaluation study. Communication skills training including role play was embedded in two modules.

Methods

Mixed quantitative and qualitative methods were used at 4 time points over 2 years. Responses to the FATCODb, meaninglessness questionnaire and PERT self assessment of efficacy were analysed descriptively and interviews thematically.

Results

Confidence increased in responding to a patient who says ‘I can see no meaning in life’ for those who felt unconfident in this at the start of the degree. Although some still reported ‘feeling uncomfortable talking about impending death with the dying person’ there was decreased agreement with ‘I would feel uncomfortable if I entered the room of a terminally ill person and found him/her crying’. The median score for self evaluated effectiveness in communicating with patients with advanced and terminal illness and their families increased from 5 to 8.5 on an 11 point scale. Interviews identified much greater confidence in working with communication scenarios that students previously would have found challenging and would have avoided or disengaged with. Use of silence was a key new strategy.

Conclusion

Students felt more able to deal with challenging situations and self-reflective as well as externally reported practice indicated a greater competence in key end of life communication tasks. Students identified the pivotal importance of confidence and competence in communication which underpinned the outcomes for all aspects of end of life care.
Experiences of nursing and postgraduate medicine students during a 1 week's clinical placement
Authors: Namukwaya Elizabeth , Dunn Joanna , Batuli Mwazi , Leng Mhoira
Published: March 2012

Training students in medical and nursing schools at undergraduate and postgraduate levels in palliative care is crucial in the integration of palliative care services in hospital settings. It can be challenging to find time in busy curricula for a new subject and even more challenging to ensure there is a strong clinical modelling as part of the training. The authors achieved time for training in palliative care at undergraduate and postgraduate level which includes classroom lectures, a 1 week clinical placement and summative assessment. However it was not clear if this duration of training makes a difference for the students.

Aim

To describe the experience of nursing students and post graduate medicine students during a 1 week's clinical attachment to a hospital palliative care unit and its impact.

Methods

A Qualitative study was carried out. Twelve nursing students and ten postgraduate doctors training in internal medicine who previously had been on placement in the hospital palliative care unit were interviewed using semistructured questions. Interviews were recorded and transcribed. The transcripts were subjected to thematic analysis and thematic saturation was achieved.

Results

Students reported improved understanding of palliative care, when and to whom it should be given and felt more confident to help dying patients and to break bad news. The clinical placement dispelled their fears towards use of opioids. They felt that their practice had changed towards those with terminal illnesses and all other patients and their families in general.

Conclusion

This study demonstrated that even short training can have an effect on changing students' knowledge and views towards palliative care. Therefore Palliative care trainers should try to maximise the time they have in the curriculum and ensure clinical modelling is included. This is hoped to have long term impacts on clinical practice and will be the subject of further study.
Palliative sedation – a snapshot of current practice
Authors: Harrison Tim , Robertshaw Carolyn
Published: March 2012

Background

The use of sedatives in palliative care is under increasing scrutiny. Many different drugs are used and, although midazolam is often the preferred choice, there is no established consensus as to best practice. At a recent course on symptom control delegates were asked a series of questions in order to provide a snapshot of current practice.

Aims

To ascertain preferred choices of drugs used in sedation in order to facilitate development of a ‘sedation ladder’ to guide practice. When midazolam is used as first choice sedative, to establish at what dose addition of a second agent is considered.

Method

250 delegates were presented with a list of nine choices of drug that may be used for palliative sedation. Using an electronic feedback system they were asked to indicate their usual first, second and third choice. In the scenario of midazolam being used as first choice sedative they were also asked ‘What dose (of midazolam) do you consider adding a second agent?’

Results

The 250 delegates included 127 doctors, 115 specialist nurses and 3 pharmacists. Midazolam was the first choice sedative for 81% of the delegates responding. Levomepromazine was the second choice sedative for 82%. Third choice sedative was more evenly balanced between haloperidol and phenobarbital at 42% and 36.9% respectively. When subcutaneous midazolam is first choice sedative 30% would add an additional drug at 30 mg/24 h whereas 4.8% would not consider this until doses exceeded 100 mg/24 h.

Conclusions

Current practice suggests a hierarchy of drug choice in sedation. Midazolam is the most frequent first choice, levomepromazine the second choice and either haloperidol or phenobarbital third choice. This order of preference can be presented as a ‘Sedation Ladder’ to guide practice.
Doctors and nurses training needs for children's palliative care
Authors: Downing Julia , Boucher Sue , Marston Joan
Published: March 2012

Objectives

Children's palliative care (CPC) represents a special, albeit closely related, field to adult palliative care and in many parts of the world, training on CPC is minimal or non-existent. Thus the ICPCN undertook a survey to understand training needs for CPC.

Method

An online survey was developed addressing training needs alongside availability of CPC training programmes. The survey was online for four months from April 2011 and all ICPCN members were invited to participate.

Results

Of the 253 respondents, 72 (28%) were doctors and 96 (38%) nurses. Doctors were most knowledgeable, on a scale of 1-5, in pain assessment and management (x=4.17) and the basics of CPC (x =4.15) and least knowledgeable about HIV/AIDS (x=2.83), dermatology (x=3.19) and development of CPC services (x=3.19). They felt most confident in communicating with children (x=3.93) and working with families (x=3.93) and least confident in HIV/AIDS (x=2.79) and therapies such as play (x=2.78). They prioritised their training needs as communicating with children, psychological aspects and setting up and managing services. Their least priority included feeding and hydration, cancer and dermatological issues. Nurses felt most knowledgeable in working with families (x=4.02) and self care (x=3.9), and least knowledgeable about HIV/AIDS (x=2.91) and Ethics and the Law (x=3.02). However they felt most confident about communicating with children (x=3.88) and working with families (x=3.92) and least confident about HIV/AIDS (x=2.79) and Dermatological issues (x=3.15). They prioritised Ethics and the Law, Neurological symptoms and setting up and managing services, with basics of CPC, communication and gastrointestinal symptoms being seen as least priority in terms of training needs.

Conclusion

Further analysis is on-going to assess how priorities differ according to the regions in which respondents live, however understanding the training needs of doctors and nurses in CPC will help shape the development of an international training strategy within ICPCN.
Inner peace in palliative care patients: a qualitative study using grounded theory
Authors: Tan Seng Beng , Ng Chong Guan , Subramaniam Pathmawathi , Lim Ee Jane , Loh Ee Chin
Published: March 2012

Background

Inner peace is a state of mind that is free from suffering. Despite facing life-limiting diseases, it is still possible for patients to experience moments of inner peace in the midst of their pain and illnesses. The authors conduct this study to find out these moments of inner peace and the various paths eading to inner peace in palliative care patients.

Purpose

The purpose of this study is to (1) understand the types of inner peace in palliative care patients, to (2) understand the paths leading to inner peace in palliative care patients and to (3) construct a theory of inner peace in palliative care patients.

Method

Grounded theory is used in gathering, synthesising, analysing and conceptualising the data to achieve the above purpose.

Results

Regarding the types of inner peace, the study reveals four categories: (1) physical peace, (2) psychological peace, (3) social peace and (4) spiritual peace. Regarding the paths leading to inner peace, six categories are revealed: (1) self awareness, (2) positive thought, (3) positive emotion, (4) positive behaviour, (5) positive attitude and (6) self regulation.

Conclusion

The former categorisation of the types of inner peace enables us to understand inner peace in a systematic manner. It helps clinician in recognising the types of inner peace in patients. The latter categorisation gives us a deeper understanding of the various paths leading to inner peace. It provides a guide in developing various mechanism-based approaches that help patients to achieve inner peace. From these two findings, the authors construct a model of inner peace that can be generalised to all patients in the field of medicine. This model of inner peace can help clinician to facilitate patients in achieving inner peace in spite of their illnesses.
Exploring the carers experience of the symptoms of prion disease
Authors: Ford Liz , Gorham Michele , O'Donnell Veronica , Knox Jane
Published: March 2012

Background

Prion diseases, also known as transmissible spongiform encephalopathies (TSE's) are a group of progressive neurodegenerative conditions for which there is no current treatment or cure. Human prion diseases include sporadic CJD, variant CJD and inherited prion disease. The National Prion Clinic (NPC) is the national referral centre for prion disease. The NPC provides diagnosis and care for all forms of prion disease and also plays a key role in facilitating research to promote early diagnosis and the development of potential therapies. Currently the NPC run the National Prion Monitoring Cohort, an observational study which aims to build up a detailed understanding of the complex symptoms of prion disease and establish which tests most accurately measure disease progression. A symptomatic measurement tool has been developed to assist with monitoring patients' condition.

Aim

1) Establish the face validity of the symptomatic measurement tool. 2) Explore carer experience of caring for someone with prion disease.

Method

Twenty family members of people with prion disease who had the role of main carer for the duration of their illness were selected. The sample included carers of deceased patients and those currently caring. Each carer was interviewed for up to 2 h. Interviews were recorded. Carers were asked to describe each symptom as it presented from the onset of illness to the present day. Carers were encouraged to describe the impact each symptom had on their relationship with the patient and wider family relationships.

Results

The project is on-going. Early interviews suggest that symptoms such as personality and behaviour change, and mood disturbance are difficult to capture and score quantitatively, yet these are the problems which affect carers, and in turn patients the most. These symptoms are most likely to lead to carer burn out and breakdown of care package and therefore require careful monitoring.
Identifying the priority support needs of older care givers of people with advanced cancer
Authors: Kennedy Sheila , Seymour Jane , Bird Lydia , Cox Karen , Clarke Amanda
Published: March 2012

Background

Increasing numbers of people first facing a cancer diagnosis, and many cancer survivors, are older people with significant co-morbidity. Support for these people is provided mainly by family and friends, most often by spouses, themselves often older people with health problems. Although many people prefer to be looked after and die at home this is achieved only by a minority, with carer breakdown recognised as the primary reason for crisis admissions of the dying to hospital. Understanding the support needs of older carers may help end-of-life-care and dying at home become feasible for more of those who want it.

Aims

To explore end-of-life-care giving and support experiences of older people looking after someone with advanced cancer. To identify older carers priority support needs.

Methods

A UK community study involving focus groups and interviews with older carers with experience of providing end of life care to someone with cancer. Participants reported their experiences of care giving and carer support. Using a modified ‘nominal group technique’, group participants recorded the most important support they received and the main problems encountered. Priorities for support of older carers generally were reached by consensus. Qualitative and descriptive quantitative data analysis was undertaken.

Results

35 older carers (56–82 years) were recruited. Five were interviewed, 30 attended a group. Findings illustrate the profound and enduring impact of care giving and show that some difficulties are accentuated in old age. While a few participants described positive end-of-life-caring experiences, most found them difficult. The participants' prioritised support needs and factors contributing to the diversity of experiences are presented, including those relating to the care dyad and those external to it, for example the accessibility and co-ordination of support.

Conclusions

While our findings are reflected in research about carers of all ages, particular problems and support needs are accentuated in old age.
Who cares? A prospective study to develop an alert system for informal carers
Authors: Knighting Katherine , Jack Barbara , Roe Brenda , O'Brien Mary , Nolan Mike , Lloyd-Williams Mari
Published: March 2012

Background

Informal family carers have vital roles caring for patients with cancer and advanced progressive illness, especially during the final year of life, which can incur an increasing burden compromising their physical and psychological health. Understanding how to prevent these stresses is vital to meeting the increasing demands for home-based care and to prevent inappropriate hospital admission of patients. Carers require regular assessment to alert health and social care professionals to their increasing level of burden and to trigger additional support.

Aim

The project has four phases which will culminate in the development and evaluation of an assessment thermometer to assess carers' needs. The thermometer will act as an alert indicator to the increasing burden experienced by carers in order to trigger referral of carers to appropriate support or services.

Method

The first phase of the project is an interview and focus group study with carers in Northwest England. Interviews will be conducted with carers who are currently supporting patients registered on the Gold Standard Framework or palliative care registers held by general practices in order to gather prospective data about carers' experiences and needs. These interviews will be conducted longitudinally where possible in order to capture the changing needs of the carers during the last 12 months of the patient's life. The focus groups will involve current and bereaved carers to capture a broader perspective on the issues faced.

Results and conclusions

The main themes identified from the interview and focus group study with carers will be presented, along with a discussion of the future development of the assessment thermometer.
Prepared to care: managing home based care and the information needs of carers at end of life
Authors: Harrop Emily , Nelson Annmarie , Byrne Anthony
Published: March 2012

Background

The physical care needs of patients approaching the end of life are considerable and require specialist knowledge and skills among those who care for them. However, while health professionals receive extensive training and guidance on how to manage such needs when hospice patients are discharged back home families often express concern as they themselves receive no formal training or guidance on practicalities of physical care and instead adopt a ‘trial and error approach’ to palliative care. Such experiences create barriers in terms of the families' self-perception of the care they can provide, and can precipitate re-admission to hospital. This is not only problematic for the patient but also impacts upon carer wellbeing. A variety of psychological and physical health problems have been identified for carers, some of which are associated with carers' perception of competence and the quality of care that they provide.

Aims

To explore carers perceptions of their experiences of caring and to identify unmet needs to inform a subsequent intervention.

Methods

We carried out four focus groups in September 2011, two focus groups with nurses at a local hospice and two focus groups with carers/former carers of patients at the hospice. The group discussions explored experiences of, and views on, the challenges of providing care in the home setting, the information and training needs of carers and the feasibility and practicalities of possible interventions.

Results

This paper will report the main themes to emerge from the data, following a thematic analysis of the focus group transcripts.
The location of community palliative care nurse specialist patient assessments: patient perceptions
Authors: Carby Jo
Published: March 2012

Background

It is current practice for the Community Palliative Care Nurse Specialist (CPCNS) service at Wigan & Leigh Hospice (WLH) to provide all assessments in patients' own homes. While the value that patients place upon CPCNS services has been extensively explored in the literature, their views regarding the location of assessments have not been considered.

Aims

To explore the value that patients who are functionally able to attend clinics, place on the location of their CPCNS assessments.

Methods

Semistructured interviews of CPCNS service users assessed as functionally able to attend a clinic. The interviews were transcribed and thematically analysed. Ethical approval was obtained through The Department of Health Research Ethics Committee at Lancaster University and the research panel at WLH.

Results

Home-based assessments add a distinct quality to the CPCNS assessment, positively facilitating communication, empowerment, information and advice provision as well as responsiveness and flexibility. Concerns regarding clinic environments included confidentiality, unpleasant waiting room environments, long waiting times, inflexibility and the burden of travelling. Clinics enveloping principles of ‘at-homeness’, such as friendly staff and pleasant waiting areas were perceived as more helpful than those described as more clinical.

Conclusions

The cost-effectiveness of CPCNS clinics for current service users is questionable due to their perceived burden of travel and fluctuating clinical conditions, which may impact upon higher levels of appointment non-attendance. CPCNS clinics may offer an opportunity for the wider access of people for short term, multidisciplinary interventions earlier in their disease trajectory. Such clinics should envelop the principles of ‘at-homeness’, responsiveness and flexibility, that are so valued by service users. Further research is required into how CPCNS, Palliative Medicine and the wider multidisciplinary team can better integrate to continue in the quest for high quality, needs appropriate, timely and cost-effective palliative care for all who require it.
Achieving preferred place of care and death: Results from a post bereavement survey
Authors: Hunt Katherine , Shlomo Natalie , Addington-Hall Julia
Published: March 2012

Background

A key aim of the End of Life Care Strategy is to enable more people to die in their preferred place; this is often their own home. However, hospital remains the most common place of death, particularly for people dying from causes other than cancer.

Aims

To explore end of life care preferences and determine predictors of achieving preferred place of death, home death and hospital death.

Methods

The Office for National Statistics drew a proportionally allocated stratified sample of deaths registered in two PCTs between October 2009 and April 2010. Coroner-registered deaths and deaths under the age of 18 years were excluded. The VOICES questionnaire was sent to each informant (n=1422, usually bereaved relative) 6–12 months after the death. As planned, data were weighted to account for response bias.

Results

473 returned questionnaires (33%). 35% of respondents reported that the deceased had said where they wanted to die (mainly home 68%). This was apparently recorded for 36% of those expressing a preference. Only 1% was reported to have changed their mind about where they wanted to die. Cancer patients were significantly more likely to die at home than those who died from any other condition (p<0.001) and significantly more likely to have a record of preferences (OR=5.86). Having a record of preferences was significantly associated with both achieving preference (OR=21.0) and home death (OR=15.9) when adjusting for age, sex, deprivation, knowledge of imminent death, relationship of informant, cause of death and number of home services used. Conversely, a reduction in the odds of having recorded preferences was associated with hospital death (OR=0.20).

Conclusions

Although, out of all causes, cancer deaths were most likely to occur at home, having a record of preferences was the only independent predictor of achieving preferred place of death.
How do doctors decide whether it is appropriate to treat people with VTE and advanced cancer?
Authors: Sheard Laura , Dowding Dawn , Johnson Miriam , Prout Hayley , Noble Simon , Maraveyas Anthony
Published: March 2012

Background

Studies have shown that long-term LMWH (low molecular weight heparin) is superior to warfarin for ambulant, good performance status cancer patients with venous thromboembolism (VTE) and is standard care. Patients with poor performance status are largely excluded from these studies. We explored the barriers for doctors in their investigation and treatment of advanced cancer patients with VTE.

Method

Qualitative in depth interview study conducted with 45 participants (oncologists, palliative medicine doctors and GPs) working across a range of grades in Yorkshire, England and South Wales.

Results

A strong theme emerged from the data about whether doctors considered it ethically appropriate to investigate and/or treat a patient with advanced cancer for VTE. The expected prognosis of the patient was a pivotal factor in decision making. Doctors were more willing to investigate and treat if the patient had a better prognosis. There was considerable debate whether LMWH should be used in patients likely to die within days/weeks and whether these patients should be moved for investigation, with concerns about inflexible ambulance transport and worries that hospital was not able to manage such unwell patients. Uncertainty existed about when LMWH injections should cease with some feeling a sense of over-caution in their own and others' treatment of patients as a result. Participants diverged on whether dying of a PE was ‘a good way to go’ with a minority viewing LMWH treatment as ‘overmedicalisation’. The lack of evidence base in this patient group was observed. Illustrative quotations will be employed.

Conclusion

The personal ethical framework of doctors plays a large role in medical decisions. Acknowledging this via empirical research informs a scant evidence base about how decisions are made for VTE management.
Understanding integrated care pathways in palliative care – context, approaches, outcomes
Authors: Dalkin Sonia , Jones Diana , Lhussier Monique , Cunningham William
Published: March 2012

Background

Policy and evidence based guidelines have aided in identifying a greater need for advanced palliative care services. However, there is still evidence of individuals dying undignified deaths with little pain control, therefore inflicting unnecessary suffering. In West Northumberland use of new commissioning powers have enabled an innovative Integrated Care Pathway (IPC) to be created in order to improve arrangements for individuals with life limiting illnesses who require palliative care. The ICP itself is novel as it aims to begin palliative care in the last 6 months of life, therefore intervening early to ensure a good death. What is not known is if this ICP works, how it works and who it works for.

Design

A realistic evaluation will identify context, mechanism and outcome (CMO) configurations within the ICP and facilitate exploration of how the ICP works and who it works for. Mixed methods and small sample sizes will be used in each section of research to capture the breadth of the ICP. Phase 1 will identify if the ICP works through analysis of NHS MIQUEST data, the Death Audit and the Quality of Death and Dying Questionnaire. Phase 2 employs soft systems methodology with data from focus groups with health professionals to identify how the ICP works. Phase 3 involves use of the Miller Behavioural Style Scale for analysis on communication in palliative care, and interviews with palliative care patients and bereaved relatives.

Discussion

This study will benefit West Northumberland by providing objective data on the palliative care ICP which will aid in developing and improving the ICP via feedback as the research occurs. The research will benefit any national implementation as it will highlight the contexts crucial for successful implementation, the mechanisms that facilitate implementation and the outcomes that can potentially be achieved by this novel approach.
Culture understanding of the discrepancy in end-of-life care implementation in China
Authors: Gu Xiaoli , Cheng Wenwu
Published: March 2012

Background

Considering the particularity of Chinese culture, with a long history of traditional ethics rooted in Confucianism, significant differences between Chinese and Western cultures exist in clinical practice. Following the western recommendations is a tough process for palliative care implementation in China. Therefore, it is essential to present some important experience for implementing the palliative care for Chinese terminally ill cancer patients from the aspect of culture understanding.

Method

648 patients received palliative care in our department between 2007–2011 (342 patients died in the ward). The authors summarised the understanding of Chinese culture difference as physician servicing in palliative care Department in Shanghai Cancer Centre Fudan University since March, 2007.

Results

The authors rooted the Chinese cultural differences from four aspects: the truth telling, the decision-making, issues about the survival length, the acceptance of death of cancer. Concealing the serious diagnoses from patients in China is common. The decision-making occurred always together with the patients' family. For serious diagnoses or fatal prognoses, physicians usually first inform a close member of the patient's family. It then becomes the family's decision whether to tell the patients the truth. So this is actually a barrier to conduct the research to understand the perception about death among Chinese terminally ill cancer patients themselves. As for acceptance of death, nearly 43% patients' caregivers asked for not resuscitate medication and asked for stopping the hydration, 26.90% died patients' relatives asked for sedation to relieve the suffering on their own initiative.

Conclusion

The discrepancy do existed in the implementation of palliative care between China and Western countries. The rooted cultural reasons maybe: the value and appreciation of filial duty connotation, obscurity, responsibility and the deep-rooted traditional Chinese death attitudes.
Feasibility study of the sheffield profile for assessment and referral for care
Authors: Ahmed Nisar , Hughes Philippa , Winslow Michelle , Bath Peter , Collins Karen , Noble Bill
Published: March 2012

Background

Sheffield profile for assessment and referral for care (SPARC) is a multidimensional holistic screening tool which provides a profile of needs (ie, physical, psychological, social, spiritual) to identify patients who may benefit from additional supportive or palliative care, regardless of diagnosis or stage of disease.

Aim(s)

A feasibility study (randomised controlled trial) is being undertaken to establish whether using SPARC improves care (impact on quality of life, interventions, consultations and referrals within supportive and palliative care), and to compare experience between patient groups.

Method(s)

The study is carried out within inpatients, out-patients, day care and in community settings, and is developed, piloted, evaluated, reported and implemented in accordance with the Medical Research Council framework for developing and evaluating complex interventions. Patients are randomised to receive SPARC at baseline or after a period of 2 weeks (waiting list control). Care continues as normal; SPARC responses are communicated to the care team to ensure identified needs are addressed. Participants are asked to complete three short research questionnaires as part of the study, repeated after 2, 4 and 6 weeks. A subgroup of participants were invited to participate in interviews.

Results

In the first 6 months of data collection, 318 patients were invited to take part, 100 patients have consented (31.4% response rate). The number of completed questionnaires returned at the following time points are as follows; baseline: n=82, 2 weeks: n=65; 4 weeks: n=51; and 6 weeks: n=37. Sixteen patients have been interviewed. Interim results and methodological issues will be presented at the conference.

Conclusion(s)

Data generated from this feasibility study will guide the development of a further, larger definitive multi-centre study to define the clinical utility of SPARC.
Advancing mixed-methods research: using timelines to depict patient journeys
Authors: Momen Natalie , Kendall Marilyn , Barclay Stephen , Murray Scott
Published: March 2012

Background

There is great interest to explore best models of collaborative cancer care, with specialists and Primary Care work together. In a study evaluating an electronic cancer ongoing record in primary care, the research team needed to display and overview a large amount of diverse data from clinical records, hospital letters and study interviews. Innovative techniques were required to understand the complexities of patient experiences involved.

Aims

To investigate the use of timelines to help display, overview and analyse a complex dataset in order to examine patients' experiences and the relationships between primary and secondary care.

Methods

General Practice case note reviews were carried out for 106 patients who had received a new diagnosis of cancer in the previous 12 months. Data concerning each patient was extracted into a form designed for the study. Timelines were created in Microsoft Visio, displaying cancer related consultations with clinicians in primary care (home visits, surgery consultations and phone calls) and secondary care (outpatient clinics, inpatient admissions, outpatient treatments).

Results

In addition to cancer related primary care appointments, all postdiagnosis primary care consultations were depicted, with additional annotations if co-morbidities were the main reason for consultation, to provide context. Relevant prediagnosis appointments, from initial presentation with symptoms, were included. The timelines were used to aid discussion in meetings of the project team and advisory group and in presentations of the study findings.

Discussion

The timelines provide a visualisation of patients' journeys that incorporated a diverse dataset from a range of sources, including case reviews and interview data. In some cases they highlighted the ways in which patients may recall consultations differently from health professionals' clinical records. Patient timelines are a useful technique to add to the health services research toolbox.
Conceptualisation of volunteering in palliative care: a narrative synthesis of the literature
Authors: Sallnow Libby
Published: March 2012

Background

Volunteering in the UK has recently been embraced under the banner of the ‘Big Society’ but its history has long been aligned to the development of the hospice movement. As the philosophy of palliative care has spread throughout the world, volunteer roles have evolved differently, influenced by local needs, local structures and the available resources. Although it is widely believed that volunteering makes important contributions to patients, their families, hospice organisations, individual volunteers and the wider society, attempts to quantify its impact or outcomes have been limited. This study aimed to develop a conceptual model through which volunteering in palliative care could be understood.

Methods

Narrative synthesis was used to develop a conceptual model of volunteering in palliative care based on a systematic review of the literature regarding volunteering in palliative care.

Results

A systematic search of the literature identified 5613 papers, of which 126 met the inclusion criteria. The review revealed three inter-related themes: (1) the impact of volunteering; (2) motivations of those volunteering; (3) the locus of control in volunteering in palliative care. Meta-ethnographic analysis produced a theoretical model in which satisfaction in volunteering is conceived as a continual process of negotiation between seeking to improve outcomes for the patient, family or organisation as well as to improve personal fulfilment and self-esteem of the individual volunteer. These aspects of volunteering may be in alignment or in opposition.

Conclusion

This review identifies the range of influences that may act on an individual volunteering within an organisation, and suggests that the traditional processes of engaging and managing volunteers require reappraisal. Greater focus should be placed on understanding the benefits of volunteering both for the organisation and the individual and the measurement of both the process and outcomes associated with volunteering.
A new, palliative care led, pathway approach to care in metastatic cancer of unknown primary origin
Authors: Hughes Philippa , Farrington Clare , Brooks David , Bath Peter , Noble Bill
Published: March 2012

Background

Recent NICE guidance highlights inequity of care for CUP compared to site-specific cancer, and recommends instigating CUP teams, to include a palliative care physician, oncologist and specialist nurse.

Aim and methods

Within a study to evaluate the development of a CUP team and pathway, we undertook a retrospective cross-sectional analysis of patient data before and during implementation.

Results

Eighty-eight patients were identified with CUP during two six-month periods: median age 75 years. Fifty-two patients (59.1%) scored 3–4 on ECOG Performance Scale (PS). Thirty-nine (44.3%) were referred for consideration of Tumour Directed Treatment (TDT) and twenty-three (26.1%) completed the planned treatment. Median time from presentation to death was 40 days. Of 88 patients, 50 were pre pathway-implementation; 38 postimplementation, not differing significantly in gender, age or PS. In the postimplementation group, patients had experienced varying degrees of application of the new pathway approach. Time from referral to instigation of definitive treatment ranged from 0 to 115 days in the prepathway group, and from 0 to 74 days in the postimplementation group. No significant difference was found between the groups in the mean rank of these times: prepathway 40.05 days; postimplementation 33.77 days (Z=−1.2348; p=0.217). Fourteen (28%) prepathway patients and 9 (23.7%) postimplementation patients received TDT as planned or with modifications. Prepathway; of 48 deaths, 7 were at home, 30 in hospital, 10 in a hospice, (one place unknown): postimplementation; of 33 deaths, 12 were at home, 14 in hospital and 7 in a hospice.

Discussion and conclusion

The majority of patients presenting with CUP have poor performance status and short life expectancy. A minority received tumour directed treatment. Early palliative care involvement has the potential to aid symptom management and curtail the longest investigatory periods, without reducing oncology referral. Further evaluation is warranted when the pathway is embedded.
Blood, glorious blood: are attitudes to blood transfusions for palliative purposes always positive?
Authors: Hayward Holly , Hiersche Andreas , Watson Liz
Published: March 2012

Background

One in five patients suffering with terminal cancer is given a blood transfusion. However, given that blood is a finite resource, research is currently lacking on healthcare professional's opinions on blood transfusions in terminally ill cancer patients.

Aims

To explore the views of healthcare staff regarding the value of blood transfusions for symptom management in patients with advanced cancer in the last months of life, and to compare practices and attitudes in palliative care and oncology staff towards palliative blood transfusions.

Methods

A web-link to an online questionnaire was distributed to 120 healthcare assistants, nurses and doctors working in either oncology or palliative care. 46 completed the questionnaire, which contained questions about the use and indications of blood transfusions in their specialty. It also asked about their views on the subject of blood transfusions in terminally ill cancer patients. Responses were compared using means, medians and percentages.

Results

Both groups of healthcare professionals thought that blood transfusions in terminally ill patients were ‘sometimes appropriate’ (3.91(4), 3.90(4)), and no oncology nurses, or doctors in either group thought blood should be withheld from them. However, some nurses in palliative care thought blood transfusions should be withheld (n=2). Less palliative care healthcare professionals than oncology healthcare professionals thought that suffering was an appropriate reason for blood transfusions (74% and 90%, respectively).

Conclusions

There is a lack of current guidelines outlining when to give terminally ill cancer patients a blood transfusion, due to the fact that every patient needs to be individually assessed. Generally, attitudes towards blood transfusions were positive; most thought that suffering was an appropriate reason for a blood transfusion. The large majority did not think that blood transfusions should be withheld. Attitudes towards blood transfusions with palliative intent were slightly more positive in oncology compared to palliative care healthcare professionals.
A review of the symptoms experienced by patients sent home from hospital as rapid discharges at the end of life
Authors: Faull Christina , Beeching Jo
Published: March 2012

Background

Surprisingly there is a very limited evidence base concerning the symptoms that patients who are dying experience. The Liverpool Care Pathway (LCP) utilised the evidence derived from patients cared for in a hospice setting, arguably patients with more complexity of symptoms than those that might die elsewhere and predominantly patients with cancer. The rapid discharge service in Leicestershire accepts adult patients with any diagnosis thought to be in the last 48 h of life who wish to die at home. All patients are cared for using the LCP and anticipatory medications for symptom management are dispensed on discharge.

Aims

To review the symptoms that arose in patients sent home from hospital who were in the last phase of life.

Methods

Case notes were reviewed for 23 consecutive patients referred in three months to the rapid discharge service. Symptoms were identified through the LCP documentation and use of drugs noted.

Results

Eight died before discharge. Six of the 15 discharged had cancer. Other patients had a very eclectic range of illnesses. Non cancer patients lived longer than cancer patients (mean 4.8 vs 1.8 days). Only one patient had a syringe driver on discharge but 11 in the last 24 h. All patients required at least one drug for symptom management. Only one needed haloperidol (for nausea). 14/15 patients required pain relief, but the majority of non-cancer patients received a higher dose of morphine in the last 24 h than cancer patients. The symptom burden of non-cancer patients, with some exceptions was greater and required higher doses of drugs in the last 24 h than cancer patients.

Conclusions

The symptom management of cancer patients who came home to die required lower doses and fewer drugs than non-cancer patients. The terminal phase for non-cancer patients is longer and their symptom burden is greater.
Interventions for the management of persistent and intractable hiccups in adults – a systematic review
Authors: Methal Naseena , Kelt Sarah , Jordan Joanne
Published: March 2012

Background

Persistent and intractable hiccup is a distressing symptom seen in patients with underlying diagnosis of cancer or end stage systemic disease.

Objective

Find and appraise the evidence for different interventions used in the management of persistent and intractable hiccups in adults.

Design

Systematic review.

Data source

Electronic databases, reference lists of studies, authors and experts.

Methods

Randomised controlled trials (RCTs) and controlled clinical trials (CCTs) retrieved through search were assessed for inclusion in the review. Data extraction and quality assessment were carried out. Meta-analyses were not feasible due to lack of comparable controlled studies and therefore a narrative synthesis was carried out. Uncontrolled studies conducted with a sample size of five or more were also analysed due to small number of controlled trials retrieved.

Results

One RCT and three uncontrolled studies conducted with Baclofen reported successful results. Three studies conducted with Gabapentin and four studies conducted using acupuncture were uncontrolled and showed positive therapeutic effects. Successful results were reported by two RCTs conducted using acupoint injection of Vitamin B6 and electric needling of Tianding. Significant improvement of hiccup was reported in two CCTs conducted with magnetic needle therapy and acupuncture and auricular plaster therapy. Other interventions reported to be potentially successful in uncontrolled studies included Valproic acid, Metoclopramide, Nifedipine, breathing pacemakers, linearly polarised near-infrared irradiation, cervical phrenic nerve block and electro-acupuncture.

Conclusion

Review suggests many possible pharmacological and non-pharmacological interventions including Baclofen, Gabapentin and different variants of acupuncture. Most studies were uncontrolled, underpowered and lacked comprehensive data and therefore recommendations are made cautiously.Well designed RCTs are essential to generate guidelines in clinical practice. The implementation of interventions in palliative care population should be a main consideration in designing future studies. Treatment of intractable and persistent hiccup is based on patients and clinicians preferences until more evidence from RCTs is available.
Sedation in palliative care: an understanding of values in clinical practice
Authors: Frew Katie , Paes Paul , Exley Catherine , Hughes Julian
Published: March 2012

Background

Sedation is a controversial issue in palliative care. Previous research has explored aspects of administration, concerns of relatives and staff and also ethical issues, predominately in retrospective studies. These studies suggest that the authors require prospective observational research into the day to day use of sedation.

Aims

The aim of this research was to describe the normative underpinnings of current hospice practice with respect to the use of sedation in palliative care.

Methods

This is an ethnographic study of the use of sedation in a palliative care inpatient unit. The primary research methods were participant observation and indepth interviewing. Data was analysed taking a constructivist grounded theory approach.

Results

Through data analysis three overarching concepts were developed. These were 1) the concept of ‘routine’ sedation; 2) the relationship of sedation to ensuring good dying and death; 3) the fundamental role of values in the use of sedation. This paper will consider the third of these. Decisions to use sedation were found in this research to be primarily motivated by values. These values related predominately to the nature of, and requirement to ensure, good dying and death in the hospice.

Conclusion

Decisions to use sedation are highly evaluative decisions, especially at the end of life. These decisions fundamentally represent the palliative care core values regarding dying in a hospice. This is important as palliative care develops to incorporate patients with different diseases and dying trajectories and as it seeks to provide equity of care to different cultural and social groups. Values-based-practice is an approach which embraces the evaluative nature of decision-making and provides a set of practical tools which are centred on individual patients' values. Values-based practice is suggested as a model to equip those making decisions about sedation while retaining the ‘framework values’ of the palliative care approach.