bluuebunny/crossref_metadata_2025 huggingface dataset:
Goal setting in palliative care: a structured literature review
Authors: Boa Sally , Wyke Sally , Duncan Edward , Haraldsdottir Erna
Published: March 2012

Objectives

To identify and synthesise existing literature on goal setting in palliative care, with a view to identifying a conceptual framework to underpin the process.

Methods

Searches were conducted using MEDLINE, PSYCHINFO, EMBASE, CINAHL, ASSIA and Google Scholar data bases between November 2010 and January 2011. Additional articles were located by screening the reference lists of those which were included. Papers were included if they focused on patient centred goal setting for patients with palliative care needs. Included papers were categorised according to type (quantitative, qualitative, mixed methods, literature review, conceptual, opinion or practice based). Research papers were quality appraised. Critical interpretive synthesis was used to analyse and synthesise data.

Results

16 papers about goal setting in palliative care were included (four quantitative, one mixed methods, three qualitative, one literature review, three conceptual, one opinion based and three practice based). Research papers varied in quality and primary focus. There was no clear definition of goal setting. Three themes emerged: what goal setting is; challenges and factors that affect goal setting and emerging theory/conceptual underpinning of goal setting.

Conclusions

Patient centred goal setting is recognised as an important component of palliative care and is described as beneficial for patients, families and professionals. It is proposed as a method of ensuring that care is patient led, giving patients a sense of control and bringing meaning. Goal setting appears to be slightly different in palliative care as compared to general rehabilitation settings, primarily because palliative care patients are dealing with deteriorating conditions, often at unpredictable rates. Hope theory and adaptation to life threatening illness provide useful adjuncts to already established theoretical goal setting literature.
National care of the dying audit hospitals (NCDAH) round 3 results
Authors: McGlinchey Tamsin , Mason Stephen , Gambles Maureen , Murphy Deborah , Ellershaw John
Published: March 2012

Background

The UK Department of Health (DH) published national guidance in end of life care for the first time (DH 2008/2009), highlighting the Liverpool Care Pathway for the Dying Patient (LCP) as a best practice model of care in the last hours or days of life. After an extensive 2 year consultation process, resulting in important amendments around more explicit goals on hydration, nutrition and skin integrity, communication and guidance for diagnosing dying, the current LCP (Version 12) was published in 2009. The Marie Curie Palliative Care Institute Liverpool, in collaboration with the Royal College of Physicians, has undertaken round 3 of the National Care of the Dying Audit Hospitals (NCDAH). The NCDAH allows submission of data against 2 elements – organisational (all NHS Trusts) and clinical (LCP) elements of care delivery in the last hours or days of life. Data driven Key Performance Indicators (KPI) were developed for organisational and clinical elements of the audit. The NCDAH Round 3 has been included in the ‘Quality Accounts’ list of national audits promoted by the DH in 2011-2012, and is the first round to measure care delivery against outcomes on LCP V12.

Aim

Present findings of the NCDAH Round 3: • Organisational elements of care delivery and KPI's • Clinical Outcomes: against core elements of care (LCP V12) • National implications for policy.

Method

Retrospective audit cycle: organisational and clinical elements of care in the last hours or days of life in hospitals in England.

Findings

131 NHS Trusts have submitted organisational data, and 178 individual hospitals have submitted outcome data from 7058 patients whose care was supported by the LCP. Participation has increased by 13% from round 2.

Conclusion

Results will be discussed with national implications for policy, education and training, and key recommendations for improvements into the future.
Routine sedation at the end of life
Authors: Frew Katie , Exley Catherine , Hughes Julian , Paes Paul
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 we 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 3 overarching concepts were developed. These were (1) the concept of ‘routine’ sedation; (2) the relationship of sedation to ensuring a good dying and death; (3) the fundamental role of values in the use of sedation. This paper will consider the first of these. A ‘routine’ form of sedation was observed in the fieldwork and developed into a conceptual model of how sedation was used in the hospice. This form of sedation enabled sedative drugs to be used with the acceptance of a reduction in patient consciousness when imminently dying. A model of the use of sedation in relation to the patient's dying trajectory and sequence of dying has been developed and forms the outcome for this part of the research study.

Conclusion

Routine sedation is integral to the palliative care approach to the dying patient; this study delineates the ways in which this form of sedation becomes acceptable in the context of a UK hospice. This research contributes to the international debate about the use of sedation in palliative care and specifically, is the first study to identify a routine practice of sedation in the UK.
Palliative care for those with non-malignant disease: beyond cancer
Authors: Fowell Andrew , Johnstone Ros , Cadwalader Betsi
Published: March 2012

The Integrated Care pathway (ICP) for the last days of life was developed in the 1990's and designed to deliver high quality end of life care in all care settings. The original concept incorporated expected deaths and consequently the tool was applied to cancer patients: the current picture is quite different. The ICP for the last days of life was implemented on an all-Wales basis in 2000 with take-up of the ICP occurring in adult hospices, hospitals, specialist in-patient units and community care settings. The Welsh pathway also has a centralised system for the collection, analysis and feedback of the ICP variances which record instances of goals not being achieved, actions taken and subsequent outcomes. This has resulted in a large database (n=19,000) reflecting end of life care delivered through the ICP across Wales. The proportion of non-cancer patients receiving end of life care through the ICP has changed notably over the past 10 years. The first 500 ICP variance sheets indicated that 8% of the sample were non-cancer patients, in 2005 the sample (n=607) showed 9% to be non-cancer patients, in 2011 non-cancer patients represent 29% of the sample. Non-cancer patients present with a variety of diagnoses such as renal failure, ischaemic heart disease and COPD. There are no differences between cancer and non-cancer patients on the length of time they are cared for on the ICP or in any aspect of symptom management variance.

Conclusion

Although developed with cancer patients in mind the ICP for the last days of life is transferable to other dying patients ensuring that they receive best quality end of life care regardless of diagnosis and care setting.
Specialist palliative care and sporadic Creutzfeldt – Jakob disease – a case series
Authors: Quibell Rachel , Gunn Hannah
Published: March 2012

Background

Creutzfeldt – Jakob disease is a rare neurodegenerative disorder with an incidence of 1.4 million in UK1. There have been 80-100 cases per year in the UK since 1990. There are 4 forms of Creutzfeldt – Jakob disease: Sporadic, iatrogenic, genetic and variant. Sporadic Creutzfeldt – Jakob disease (sCJD) is commonest and the number of deaths from sCJD has increased. sCJD is relentlessly progressive with a median duration from symptoms to death of 4 months2. Specialist palliative care role has been recognised in the past3but there is little in the literature since.

Aims

To understand in more depth the palliative care needs of patients with sCJD.

Methods

Case notes review of patients diagnosed with sCJD.

Results

Over 14 month period 6 patients were referred to hospital specialist palliative care team that covers a regional neurosciences centre. Median age 63 Median duration of symptoms to death 3 months Median duration of diagnosis to death 28 days Analysis of notes revealed the following specific palliative care issues. Family/carer psychological support around diagnosis (often late), transition to palliative care, end of life care and bereavement support. Preferred place of care and death – 6 died in a hospice, 1 at home. Symptom management. In order of frequency: Myoclonus, pain, agitation/startle, visual problems, dystonia, emotional distress, respiratory distress, communication issues, swallow/feeding issues, nausea, constipation, respiratory secretions, seizures. Family support around postmortem and care of body after death.

Conclusion

Specialist palliative care knowledge and services have an important role in the care of patients with sCJD.
Dying in hospital with Parkinson's disease: a retrospective audit
Authors: Samuel Maria , Ramsell Amy , Churm Deepta , Walker Richard
Published: March 2012

Background

Patients with idiopathic Parkinson's disease (IPD) are most likely to die in hospital or nursing homes. Recognising and managing the end-of-life phase of IPD can be challenging. Complex symptoms such as swallowing difficulties, cognitive problems and hallucinations can be present. Patients may benefit from dopaminergic treatment until the very end, but drug delivery may be difficult. Guidelines have recently been developed to assist clinicians.

Aim

To document the prevalence and management of complex symptoms at the end-of-life, and the use of palliative care services and the Liverpool Care Pathway (LCP).

Method

This is a retrospective audit of all hospital deaths from 2008 to 2010 of patients with IPD known to the North Tyneside PD service. The last hospital admission during which the patient died was audited from medical records.

Results

Medical records were available for 33 out of the 35 patients who fulfilled the criteria of this audit. 58% were male. The average length of hospital stay was 12 days. 21% were documented to have hallucinations, 39% cognitive difficulties and 45% swallowing difficulties. Of those with swallowing difficulties, 13% had an existing percutaneous gastrostomy, 47% had a nasogastric tube and 40% had neither. 27% were started on a Rotigotine patch as dopaminergic therapy. 45% were started on the LCP prior to death. Of those on the LCP, 100% had their dopaminergic therapy stopped at the time of initiating the LCP. 15% were referred to the palliative care team.

Conclusion

The recognition of the dying phase in patients with IPD remains difficult. It is recommended that dopaminergic therapy is continued for as long as possible, but swallowing difficulty at the end-of-life is common. The availability of Rotigotine patches may provide a solution to this. Finally, it may be appropriate to continue dopaminergic therapy in some despite initiating the LCP.
Evaluation of an age-appropriate palliative care service for teenagers and young adults
Authors: Elverson Jo , Cornish Liz , Wells Lucy
Published: March 2012

Background

2100 people between the age of 13 and 24 are diagnosed with cancer each year. While 75% survive following treatment, those that do not frequently have advanced and aggressive disease. It has been recognised that people in this age group have unique physical, psychosocial and developmental needs which are not always identified or addressed. These include the need to establish independence; explore relationships and intimacy; and maintain normality through education and peer support.

Aims

At Douglas house, we aim to provide a flexible palliative service for teenagers and young adults with cancer based in a hospice for young adults. The service seeks to provide age-appropriate, individualised care, working closely with both adult and paediatric oncology and palliative care teams. We recognise the need to evaluate the impact of this service robustly since its beginning in 2010 to ensure it is meeting previously unmet needs appropriately. Evaluation has included case history reviews; interviews with patients and potential patients; and audit of types of input and intervention that have been utilised, and their outcomes.

Conclusion

The young people's palliative care team has been able to learn from the individuals who have come under our care. Support has ranged from provision of time away from hospital during oncology treatment; facilitating difficult conversations with professionals and parents; providing symptom control; enabling normality and independence through group activities; and input at oncology multidisciplinary meetings. Our experience has taught us the need to think creatively about ways to support an age group who do not always engage with services in conventional ways. This has enabled us to continue to address the physical and psychosocial needs of both the patients and their families.
The NHS Scotland unified approach to paediatric resuscitation using the children and young peoples acute deterioration management (CYPADM) policy: development and implementation of quality measures
Authors: Murphy Dermot , Wilkie Rosalie , Davison Hillary , Spiller Juliet
Published: March 2012

Background

The Scottish Government has been instrumental in leading policy development for resuscitation planning. ‘Living and Dying Well’ a national action plan for palliative and end of life care made an integrated approach to DNACPR decision making an action point. This produced the first, national policy for DNACPR decision making in Europe. Simultaneously, work done in the paediatric sector highlighted the need for a positive and permissive approach to resuscitation planning for Children and Young Adults and a parallel government backed initiative produced the Children And Young Peoples Resuscitation Policy which launched in January 2011.

Aims

CYPADM aims to prevent unnecessary, unwarranted or unwanted attempts at resuscitation in children. Importantly it goes far beyond a simple cardiopulmonary resuscitation decision as cardiac arrest is a very rare terminal event in children and young adults. It clearly delineates what resuscitative measures are warranted as well as those that are not. It acknowledges that a full resuscitation attempt, including ventilation may be appropriate. CYPADM ensures that discussion of resuscitation of children and young people occurs with consultant medical and senior nursing staff engaging with parents and young people in a developmentally appropriate fashion. CYPADM is intended to be used in all care settings in both the statutory and voluntary sectors.

Method

Health Improvement Scotland undertook on-going evaluation of the DNACPR and CYPDM policies in consultation with a core multidisciplinary group including representatives from all Health Boards, the Scottish Ambulance Service, the Care Commission and NHS24. Measures have been developed which will establish the extent to which these policies impact on patient care with regard to inappropriate CPR attempts, expected death, and anticipatory care planning.

Conclusion

CYPADM assures an integrated, permissive approach to resuscitation planning and communication for children and young adults across Scotland. Electronic audit via the Scottish Paediatric Surveillance Unit is on-going.
Impact of a 2 h multi-approach-palliative care class on knowledge, attitudes and behaviour in 5th year medical students
Authors: Jaturapatporn Darin
Published: March 2012

Background

Medical students have traditionally received no education in palliative care. However, in 2002, as part of a revised medical curriculum, Year 5 undergraduates at Ramathibodi Hospital, Mahidol University, Bangkok, Thailand participated in a 2 h class in palliative care.

Methods

Thirty-five medical students (100%) completed the pre and post self-evaluation form and written exam. Stuart Maxwell Analysis was performed to test statistic significance of the improvement.

Results

After the 2 h class, all students rate that the highest scale for their interest in palliative care, compared to 62.5% prior to the class. For knowledge, the score in written exam was increased by 50%. Attitudes toward palliative care tended to be improved by increasing the number of people who rated ‘highest’ for attitude domain from 5.71% to 74.29%. As for the confidence to practice in their real life, there was a shift from 92% who rated their confidence up to average to be 92% who had high and highest confidence after the class.

Conclusion

This 2 h lecture has significantly raised 5th year medical students' understanding of Palliative Medicine. A short, but well-structured palliative care class can be effective in increasing students' knowledge, attitudes and confidence in palliative medicine.
High fidelity simulation training in end of life care – a vision for the future
Authors: Boulstridge Lisa , Reed Nikki , Joanne Harper , Jonathon Stewart , Seesarun Amar
Published: March 2012

Background

High Fidelity Simulation Training originates in the aviation industry and has been shown to improve safety. Within healthcare, it is increasingly utilised to reproduce clinical situations and train multi-disciplinary professionals in technical skills and human factors. A fundamental role for clinicians of all disciplines, is the provision of end of life care. However limited work has been undertaken within the UK to develop the high fidelity simulation training model within Palliative and End of Life Care. Collaborative work between the Heart of England Hospital Palliative Care Team and the Hollier Simulation Centre has begun to explore the role of simulation training in end of life care.

Methods

During 2010, a pilot of six 1-day courses were undertaken for hospital nurses. A simulated ward provided an accurate clinical environment within which participants could monitor, investigate and treat a sophisticated patient mannequin in real time. In addition role-play of trainers enabled realistic interaction with other healthcare professionals and relatives. Appropriate signs and symptoms were replicated including pain, breathlessness, vomiting, distress, respiratory secretions, agitation and bleeding. Participants were facilitated to develop skills in symptom control, advanced care planning, hand-overs and communication. Evaluation was undertaken via participant questionnaires completed before and after the course. Visual analogue scales enabled nurses to rate their confidence in performing aspects of end of life care.

Results

The confidence of nurses increased in all areas of end of life care, demonstrated by increased mean visual analogue scores after the course. Free text responses indicated that nurses were apprehensive about undertaking simulation training but felt it was extremely effective.

Discussion

Following the success of the pilot, end of life care simulation courses are continuing within the Heart of England Trust and work is in progress to extend the model of simulation training to hospice staff and primary care clinicians.
Music, arts and death education – the St Christophers health promotion project
Authors: Tsiris Giorgos , Tasker Marion , Lawson Virginia , Prince Gerry , Dives Tamsin , Sands Mick
Published: March 2012

The therapeutic power of music and arts is widely acknowledged and documented within the field of palliative and bereavement care. Research shows the effectiveness of music and arts as clinical therapeutic interventions offering psychosocial, emotional and spiritual support to dying people and their bereaved families (eg, Hilliard, 2005; O’Kelly & Koffman, 2007). However, the potential role of music and arts in promoting public awareness and healthier attitudes towards death and dying is still an under-developed area. This presentation focuses on the St Christopher's Health Promotion Project; arts-based collaborative projects which link the hospice with other local community groups. The aim of the Project is to introduce the hospice and its work to community groups in a creative and non-threatening way and to promote healthier attitudes towards death and dying. The St Christopher's Health Promotion Project started in 2005 (initially as a Schools Project), but over the last years it has been expanded into other community groups (church groups, pubs, etc) and it has been rolled out to care-homes (Hartley 2011, Tsiriset al, 2011). The St Christopher's Health Promotion Project has been considered as innovative, with significant benefits not only to patients and families, but also to the local communities, and has been influential at policy level (see DoH 2008). The cost effectiveness of the project, as well as its transferability has inspired the development of similar projects in many hospices, as well as other healthcare institutions, both nationally and internationally. This presentation provides an overview of St Christopher's Health Promotion Project, its philosophy and aims, as well as its outcomes and future prospects. Also, some preliminary findings from a formal evaluation of the Project are presented and questions regarding the potential impact of music and arts on the development of sustainable healthcare policies and practices are outlined.
Lessons learnt while piloting the national e-learning end of life care (EoLC) programme in a district general hospital (DGH) setting
Authors: Anthony Julie , Collins Naomi , Littler Claire , Kelly Laura
Published: March 2012

Background

The End of Life Care (EoLC) for All e-learning package (e-ELCA) was developed by the Association of Palliative Medicine to support the End of Life Care Strategy (2008). It aims to provide accessible teaching to a wide range of staff with differing expertise and educational requirements. A 3 month pilot of e-ELCA was undertaken at East Surrey Hospital, a District General Hospital (DGH).

Aim

The main aims of this pilot: to train between thirty and forty ‘superusers’ whom, after completing two modules, could provide on-going support and training of all staff on EoLC via the use of the e-learning package and to evaluate staff knowledge and confidence in EoLC before and after the pilot via the use of a questionnaire.

Methods

A specialist palliative care team nurse was seconded to support the training of ward staff. The e-learning training was consolidated on two acute wards and made universally available on the hospital intranet.

Results

Sixty-four modules were completed by twenty nine staff during the pilot period. Undertaking the pilot highlighted difficulties: the e-ELCA site had to be accessed via an external site which proved difficult to use. Passwords, usernames and guidance on site navigation were required for all new users. Access to ward computers was limited and software was sometimes incompatible. Modules took longer to complete than expected, especially when English was a second language. Most importantly, to train ward nurses backfill of nursing posts was essential due to clinical pressures.

Conclusion

e-ELCA can be undertaken in a DGH provided there is adequate IT support, accessing the material needs to be more user friendly and backfill of clinical posts is essential.
Creating a cognitive–behavioural therapy (CBT) skills cascade for palliative care practitioners
Authors: Mannix Kathryn , Baker Christine , Sage Nigel , Moorey Stirling
Published: March 2012

Introduction

Emotional distress is common in palliative care and access to expert psychological help is limited. We have developed, evaluated and cascaded a brief training in CBT skills for palliative care practitioners that enables them to address patient distress and enhance coping. We will describe the cascade process and outcomes.

Background

A palliative physician trained in CBT developed a hospice-based CBT practice and observed that CBT was acceptable and helpful to palliative care patients. A number of key interventions were identified to be included in a brief training package that was piloted in Newcastle and St Christopher's Hospice Sydenham. Training was effective in enabling staff to use intermediate CBT skills and in reducing patient distress. Expert CBT supervision was essential to preserve staff confidence and competence. Cascade plan: A Department of Health Innovations grant was obtained by Marie Curie Cancer Care and St Christopher's Hospice to cascade the CBT skills training over 3 years (2009 -12). Four of six training courses are now complete; each course has trained about 20 new ‘CBT First Aiders’ and two new trainers. Courses have been held across England (DH terms).

Outcomes

After training, staff are able to use a repertoire of CBT-based skills in their usual practice to improve emotional distress and enhance coping with physical symptoms, address changes in body image and physical ability and reduce dysfunctional coping strategies. Access to expert supervision ensures appropriate patients are helped by the CBT First Aiders while more serious problems are referred for expert help, ensuring best possible use of limited psychologist availability. Establishing a local psychological skills pyramid ensures rapid access to emotional help for patients, increases staff job satisfaction, enables psychology experts to see selected, triaged, appropriate patients while supporting many more patients by providing group supervision to CBT First Aiders.
The experience of patients with COPD who access specialist palliative care: a qualitative study
Authors: Hayle Catherine , Coventry Peter A , Gomm Stephanie , Caress Ann-Louise
Published: March 2012

Background

Patients with end-stage chronic obstructive pulmonary disease (COPD) experience health-related quality of life comparable to, or worse than that of people with advanced non-small cell lung cancer. Access to specialist palliative care is poor for those with COPD, and comparisons with lung cancer patients demonstrate inequalities. National COPD guidelines state that patients ‘should have access to the full range of services offered by multidisciplinary palliative care teams’. Services are being developed to address this inequality, but it is not known whether current models of specialist palliative care are appropriate to the needs of COPD patients.

Aim

To understand the experience of patients with COPD who access specialist palliative care.

Methods

Eight patients accessing any service for one month (outpatient) or one week (inpatient) undertook semistructured interviews (mean duration 34 min). Recordings were transcribed verbatim and analysed using hermeneutic phenomenology.

Results

Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical symptoms, reduced social isolation and a broadened physical environment in which participants could function. Improvements in psychological wellbeing (including improved mood, confidence and self-worth) were also described. Patients were aware of their poor prognosis, but some were initially distressed at the prospect of palliative care referral, mainly due to prior associations between palliative care and death. Perceptions changed following engagement with services, with fear of discharge becoming problematic.

Conclusions

There is much within existing services that works well for people with COPD, but some features of care could be modified, such as patterns of service provision and discharge policy. In contrast with previous literature, participants were aware of their poor prognosis. However, work is needed to dispel negative perceptions of specialist palliative care among COPD patients, as they may form a barrier to access.
Palliative care for young people aged 16–24: assessing hospice staff training needs
Authors: Parr Alison , Kelly Lynn , Cail Andrea , Pearcy Helen , Allen Sue , Clarkson Patricia
Published: March 2012

Background

Derian House Children's Hospice and St Catherine's Hospice (Adult service) successfully bid to the Department of Health to fund a joint project to improve access to hospice care for young people aged 16–25 years. As part of the project, we surveyed training needs of staff within the two organisations specifically with regard to caring for this age group and their families.

Results

Fifty-two completed questionnaires were analysed; 34 (64%) from St Catherine's Hospice and 18 (34%) from Derian House Hospice. The survey included questions about role, work setting, frequency of involvement with young adults, assessment, communication and clinical management skills, previously identified training needs, access to relevant training and preferred learning methods. The majority of staff had some degree of confidence in all key areas of assessment, communication and management. However, staff generally lacked the confidence to train others, with the exception of management of pain and other symptoms and the use of syringe drivers. Significant training needs were identified. Overall trends were similar amongst adult and paediatric staff, although there were some significant differences. Training specific to the age group in question was highlighted as difficult to find and much needed locally.

Conclusion

Lack of confidence of staff working within or allied to specialist units has implications for implementation of the national End Of Life Care Strategy. Provision of good clinical care for young adults with a diverse range of life-limiting conditions requires close collaboration between multi professional clinical teams working across geographical and organizational boundaries. A joint approach to workforce development involving NHS services, voluntary organisations and universities has been incorporated within the Central Lancashire Palliative Care Education Strategy with the aim of improving our ability to meet the needs of this specific group of patients.
Extent of palliative care need in the acute hospital setting: a prospective survey of two acute hospitals in the UK
Authors: Gardiner Clare , Ingleton Christine , Gott Merryn , Noble Bill , Bennett Mike , Seymour Jane
Published: March 2012

Background

The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority, acknowledging that a proportion of patients dying in hospitals receive poor care. The identification of patients who may benefit from palliative care is well recognised as problematic and health professionals have reported difficulties with recognising when a palliative care approach may be appropriate.

Aim

To explore the extent of palliative care need in the acute hospital setting, and to explore agreement between different sources in the identification of patients with palliative care need.

Method

A prospective survey of inpatients at two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to GSF criteria. Ward based medical and nursing staff were asked to identify patients with palliative care needs according to a standardised definition.

Results

Data were collected from 514 consenting patients (response rate 37.8%), of these185 (36.2%) met one or more GSF criteria for palliative care need. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Agreement between medical staff and GSF (κ=0.22), and nursing staff and GSF (κ=0.25) was poor in relation to identifying patients with palliative care needs.

Conclusion

The results reveal that according to the GSF prognostic guide, over a third of hospital inpatients meet the criteria for palliative care need. Consensus between medical staff, nursing staff and the GSF was poor regarding the identification of patients with palliative care needs. This has significant implications for patient care and draws into question the utility of the GSF in the hospital setting. Further research should seek to develop standardised criteria for identifying patients with palliative care needs in hospital, and to educate staff in implementing guidelines.
Palliative care in Slovenia's nursery homes for the elderly
Authors: Bobnar Albina
Published: March 2012

The purpose of our study was to find out whether the palliative care principles and practices have entered the professional ethics of nursery home caregivers and assess the feasibility of applying palliative care in those surroundings. The survey on 34 nursing home caregivers in Slovenia, who attended the training course in October 2008, was performed by using questionnaires. The mean age of the 34 participants was 36.5 years. The majority of them (24) had secondary school. Half of them were working at nursery homes for the older people, 10 years. Throughout this period 19/34 were rarely or only exceptionally faced with the care for dying patients. They (27) were believed to have general knowledge on palliative care. In nursing terminal patients, 23 participants were considered to have been of great help, while 12 were reported to have been emotionally exhausted. In case of difficulties they could get support from their colleagues (27) or from their superiors (17). Two thirds of the responders were interested in additional training in providing psychological support and in pain control. They were not adequately acquainted with general palliative care principles and practices. The authors conclude that the participants have rather poor experience with the nursing of dying patients. The majority of them are very rarely faced with the experience of attending a dying person. The knowledge that they have obtained on palliative care is at a general level. Despite their inadequate knowledge, a surprisingly great number of them were believed to be of great help in nursing terminal patients, although this experience was mostly emotionally and physically exhaustive. This may be the result of the inadequate care and psychological support offered to the employees while going through this hard experience of caring for a dying patient and mourning for him.
Causal attributions of multiple sclerosis among black Caribbean and white British people with MS
Authors: Goddard Cassie , Silber Eli , Higginson Irene , Rachel Burman , Diana Jackson , Koffman Jonathan
Published: March 2012

Background

The prevalence of multiple sclerosis (MS) is thought to be increasing among UK minority ethnic groups but little is known about their illness perceptions of its causation. These may influence attitudes to service use.

Aim

To explore meanings people severely affected by MS attribute to their disease, and understand how these may be culturally patterned.

Method

Semistructured qualitative interviews were conducted among black Caribbean (BC) and white British (WB) people with MS (PwMS) with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach.

Results

15 BC and 15 WB PwMS were interviewed with mean ages of 46.6 and 56.9 years respectively. Causal attributions were complex, with most PwMS reporting multiple explanations to account for their MS. PwMS from both ethnic groups provided ‘logical and scientific’ accounts; these included genetic/viral influences, stress, the environment and lifestyle factors. Familial history of MS was specific to WB PwMS, while some BC PwMS referred to bodily insults, for example injuries. Traditional ‘supernatural’ attributions departed from a biomedical perspective and included religious challenges or tests from God. Although these two views were cited more frequently by BC than WB PwMS, the notion of punishment was not always fully endorsed by them. While ‘fate or destiny’ accounted for another lay attribution specific to BC PwMS, where MS was believed to have been written into their life plan, a number of PwMS from both groups acknowledged the possibility of randomness MS causation.

Conclusion

The authors identify, for the first time, a range of illness attributions PwMS use to explain their illness that depart from a biomedical model, and are culturally specific. ‘impeccable assessment’, central to the principle of specialist palliative care and neurology, must incorporate cultural relativism; this identifies and values social difference which maybe central in enhancing concordance with treatment and care.
Observing district nurses roles in palliative care: an understanding of aims and actions
Authors: Walshe Catherine , Payne Sheila , Luker Karen
Published: March 2012

Background

Research into professional roles in palliative care provision mostly investigates professionals stated care aims and their own descriptions of care given. There is little detailed knowledge about the actions of professionals. This can hamper efforts to influence care outcomes, if the processes that precede them are not well understood.

Aim

To investigate the role of the district nurse in palliative care provision, with a particular focus on observational exploration of their role and practice in providing patient care.

Methods

A longitudinal qualitative ethnographic design, comprising observation of district nurse/palliative care patient/carer encounters over time, and post observation interviews with patients, carers and district nurses (DNs). Patients were sampled from 12 DN team caseloads across three primary care organisations. Observations and interviews were audio-recorded and transcribed. Iterative data analysis comprised familiarisation, coding and categorisation using techniques of constant comparison to generate typologies of concepts. The study received all necessary ethics and governance approvals.

Results

17 DN/patient encounters were observed (n= 11 patients, 8 nurses) with 23 post observation interviews (11 DN, 12 patient/carer). Key themes include ‘planning for the future’ and ‘caring in the moment’. DNs emphasised the importance of advance planning and the impact current relationship building had on future care. However, observations revealed scant overt advance care planning initiated by either DNs or patients. Most care focused on current problems, primarily physical symptoms. Patients and carers valued care received citing district nurses warmth and efficiency, but were often unaware of potential future DN roles.

Conclusions

There is an apparent mis-match between district nursing aims and actions. It is critical to meet patients current care needs, but the lack of patient involvement in advance planning may have an impact on meeting preferences for place of care and death.
A feasibility study of pro-active cancer care in the community
Authors: Murray Scott , Kendall Marilyn , Barclay Stephen , Momen Natalie
Published: March 2012

Background

Two million people in the UK live with cancer: this will double by 2030. Research which tests a primary care model of supporting this growing population from diagnosis to palliation is urgently required.

Aim

To assess the feasibility of active follow-up of patients in primary care from cancer diagnosis onwards.

Methods

A two phase, mixed methods, action research study. An electronic Cancer On-going Review Document (CORD) was first developed by patients and professionals, for use with all patients with a new diagnosis of cancer. This was evaluated through record review, qualitative interviews with patients, family carers and health professionals, and documentary analysis of the CORDs. Interviews were recorded, transcribed and entered into NVivo for thematic analysis, and numeric data analysed using SPSS.

Results

The records of 106 patients from 13 practices were examined, and 45 interviews conducted. CORDs were usually used only once (range 1–9 times), but when used prompted clear and often graphic documentation of multi-dimensional needs and understanding. General Practitioners felt it helped to structure consultations and cover psychosocial areas. Few discussed the review openly with patients, and the template was often completed after the consultation. Patients and carers valued a palliative care approach from primary care, which was seen to offer holistic care and close relationships, and from early in the disease trajectory.

Conclusions

This tool is unintrusive and patient centred, promoting continuity of care and holism. If more on-going care for cancer patients is to be delivered in the community in a chronic disease model, this template may be useful but needs to be better integrated and incentivised within practice IT systems. A care framework akin to other chronic illnesses such as Diabetes, which uses specific templates is possible in primary care, but needs to be integrated and prioritised.
End of life care for people with dementia: an intervention to promote collaborative working between care home staff and healthcare practitioners
Authors: Nicholson Caroline , Goodman Claire , Mathie Elspeth , Amador Sarah , Baron Natasha , Machen Ina
Published: March 2012

Background

In England most care homes have no on-site clinician and rely on primary healthcare for end-of-life (EOL) support. The Evidem EOL study focused on end-of-life care for elders with dementia in care homes. Phase 1 found high levels of uncertainty among care home and primary healthcare staff around anticipating and supporting residents dying with or from dementia. This paper presents the piloting of a modified appreciative inquiry (AI) approach within Evidem EOL Phase 2 to facilitate end-of-life care for people with dementia in care homes.

Methods

A modified AI approach (a strength-based change management tool) was implemented in three purposively sampled care homes over 6 months (January–July 2011). A self-selected team comprising care home staff, a general practitioner and a district nurse from each care home participated in the modified AI intervention: (3 one-hour AI meetings and on-going researcher support.) Through this intervention the teams developed and implemented context specific, participant driven strategies to support EOL care for people with dementia.

Results

While evaluation is on-going, preliminary findings from thematic analysis of interviews with participants and collected data on use of emergency/acute services reveal: (1) High acceptance of the intervention, creating rapid engagement between participants who did not have a history of working together (2) Greater understanding and appreciation of respective roles and increased collaboration within the team (3) Improved EOL Care evidenced by increased advanced care planning; reduced number of emergency call outs and hospital admissions; increased staff confidence in talking to residents and family about end-of-life issues and wishes.

Discussion

Long-term sustainability of the intervention remains to be tested. However preliminary findings suggest modified AI is an effective tool to promote integrated working between care home and health services and to improve EOL care for people with dementia in care homes.
The experiences of palliative lung cancer patients participating in a clinical trial
Authors: Sivell Stephanie , Noble Simon , Harrop Emily , Byrne Anthony , Moore Barbara , Nelson Annmarie
Published: March 2012

Background

Palliative care lung cancer patients are under-represented in oncology trials and very little is understood about their experiences of participating in clinical trials. FRAGMATIC is the largest lung cancer study in the UK and is investigating the effects of Fragmin (a self-injected anticoagulant) in patients with lung cancer. This current study (QUALFRAG) is a qualitative substudy of the FRAGMATIC trial.

Aims

To explore patients' experiences of participating in FRAGMATIC and the impact on quality of life, while at the same time collecting data on patients' experiences of advanced lung cancer.

Methods

Semistructured interviews will be held with two groups of 6–10 patients (12–20 patients in total) recruited from the intervention and control arms of the FRAGMATIC trial.

Analysis

Interviews will be analysed using Interpretative Phenomenological Analysis (IPA) to identify emergent themes that reflect participants' lived experience.

Results

Data will be presented on patients' experiences of participating in the FRAGMATIC study, symptom progression and (where relevant) how tolerable Fragmin is.

Conclusions

The results of this study will help future studies target appropriate symptom control issues in palliative lung cancer patients and inform future healthcare management with respect to the treatment and prevention of cancer associated thrombosis.
Supporting people with learning disabilities who are affected by a relative or friend with cancer
Authors: Tuffrey-Wijne Irene
Published: March 2012

Introduction

Around 2.5% of the population have learning disabilities (LD). Most people with LD will be affected by cancer of family or friends at some point in their lives. Their support needs are insufficiently understood.

Aims

To explore the experiences and support needs of adults with LD who have a relative or friend with cancer. To make recommendations for practice.

Methods

Twenty-two people with LD took part in focus groups and face-to-face interviews. All participants had experience of having a close relative/friend with cancer. The groups were co-facilitated by two co-researchers with LD, using a range of methodologies (including story-telling, role play and Nominal Group Technique) to extract participants' experiences and views. Data were analysed using content analysis.

Results

Being protected from information (as many participants were) negatively affected their coping. Participants worried about their relative/friend's illness and the impact on both the patient and on themselves; but had not shared their worries or questions with others. Several participants had become carers themselves. The greatest need was for ‘someone to talk to’; this need was not met by either families or professionals. There was a lack of understanding about cancer, and a lack of access to cancer information; participants wanted such information. However, accessible information materials were viewed as less important than access to someone who could explain.

Discussion

The needs of people with LD who are a relative/friend of someone with cancer are often overlooked. This group does not ask for support, and therefore pro-active support is needed from professionals. This includes emotional support as well as informational support.