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Context Cough is a common distressing symptom in lung cancer patients. Its assessment is hampered by the lack of a validated scale to measure the complex cough experience in this population. Objectives To describe the development and preliminary validation of a scale to measure cough in lung cancer patients. Methods In the first phase, collection of qualitative data from patient interviews, a review of literature, and identification of noncancer cough scales resulted in the development of a pool of 30 items. This item pool was tested for appropriateness of content and breadth of coverage with 18 patients with lung cancer and 25 health care professionals. The second phase was the operationalization/phrasing of items. The final phase was the scale's field testing with 139 patients, 49 of whom repeated the assessment after one week. Results The first phase led to the deletion of several items and the addition of four, resulting in a final scale for field testing of 21 items. In the field testing, the scale was decreased to 10 items, eliminating items on psychometric grounds. The final scale's Cronbach alpha (internal consistency) was 0.86, item to total correlations ranged from 0.40 to 0.76, and test-retest reliability was high (intraclass correlation=0.83). Conclusion We have developed a promising tool to assess cough in lung cancer, but this needs validation, and future studies should determine whether this is a sensitive and responsive tool. A fully validated tool can be used in the clinical assessment of cough in cancer patients, and as a unidimensional impact scale in the measurement of cough as an outcome in intervention studies.

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches.

BACKGROUND: Delivering a non-pharmacological symptom management intervention in patients with lung cancer is often challenging due to difficulties with recruitment, high attrition rates, high symptom burden, and other methodological problems. The aim of the present study was to elicit quantitative estimates of utility (benefit) associated with different attribute levels (delivery options) of a symptom management intervention in lung cancer patients. METHODS: An application of Best-Worst scaling methodology was used. Effects (attributes) tested included the location of the intervention (home or hospital), type of trainer (health professional or trained volunteer), caregiver involvement or not, and intervention delivered individually or in groups of patients. Participants were asked to evaluate and compare their preferences (utilities) towards the different attribute levels within scenarios and select the pair of attribute levels that they consider to be furthest apart. RESULTS: Eighty-seven patients with lung cancer participated. The most important preferences for an intervention included the location (being delivered at home) and delivered by a health care professional. The least important preference was the involvement of a caregiver. Gender had an effect on preferences, with females being less inclined than men to prefer to receive an intervention in the home than the hospital and less inclined than men to have no other patients present. Furthermore, older participants and those in advanced stages of their disease were less inclined to have no other patients present compared to younger participants and those with earlier stages of disease, respectively. CONCLUSION: Considering patient preferences is an important step in developing feasible, patient-centred, appropriate and methodologically rigorous interventions and this study provided indications of such patient preferences.

The aim of this study was to explore the patient experience of cough in a population of patients with lung cancer.A qualitative exploratory study design was developed and elicited the views of 26 patients with lung cancer who had current or past experience with cough.The data's four themes highlight the complex and distressing nature of cough, including its interaction with other symptoms, such as breathlessness, fatigue and sleep disturbance. A theme around descriptions of cough suggests typically a dry tickly cough and highlights mechanical and environmental triggers for cough. The theme around the effects of cough in daily life shows the impact of cough in socialising, the embarrassment from cough and the psychological effects experienced by patients. The last theme focuses on strategies for coping with and managing cough, showing the perceived ineffectiveness of current antitussives and the patients' use of a variety of approaches on an ad hoc basis to try to manage their cough often unsuccessfully.Cough has not received the same attention as other cancer symptoms, which means that patients' experience of a distressing and difficult symptom is often unnoticed by health care professionals. More clinical and research attention in this debilitating symptom is necessary.

Background: Cough is a common and distressing symptom in lung cancer patients. The clinical management of cough in lung cancer patients is suboptimal with limited high quality research evidence available. The aim of the present paper is to present a clinical guideline developed in the UK through scrutiny of the literature and expert opinion, in order to aid decision making in clinicians and highlight good practice.Methods: Two systematic reviews, one focusing on the management of cough in respiratory illness and one Cochrane review specifically on cancer, were conducted. Also, data from reviews, phase II trials and case studies were synthesized. A panel of experts in the field was also convened in an expert consensus meeting to make sense of the data and make clinical propositions.Results: A pyramid of cough management was developed, starting with the treatment of reversible causes of cough/specific pathology. Initial cough management should focus on peripherally acting and intermittent treatment; more resistant symptoms require the addition of (or replacement by) centrally acting and continuous treatment. The pyramid for the symptomatic management starts from the simpler and most practical regimens (demulcents, simple linctus) to weak opioids to morphine and methadone before considering less well-researched and experimental approaches.Conclusion: The clinical guidelines presented aim to provide a sensible clinical approach to the management of cough in lung cancer. High quality research in this field is urgently required to provide more evidence-based recommendations. © 2010 Molassiotis et al; licensee BioMed Central Ltd.

Biographical accounts of illness offer useful insights into the social and adaptive processes of living with chronic illness. Yet there are concerns that the underlying theoretical assumptions of a reflexive self seeking to maintain meaning may not reflect the lived experience of individuals. A narrative emphasis may neglect the importance of emotional/felt experiences; while an analytical focus on disruptive processes may not adequately reflect the totality of actual events. In this study, we explored how well biographical theory supports understanding of individual lived experience. Narratives from 19 individuals identified from General Practice lists with a terminal diagnosis of cancer were analysed using the holistic-form approach described by Lieblich. Participants described an ongoing process of living their life, ‘managing’ disruptive events and maintaining an overall sense of well-being (narrative form = biographical flow). For a minority, continuity was lost when people’s capacity to continue living their everyday lives was overwhelmed (narrative form = fracture). The identified emphasis was on individual creative capacity in the face of terminal illness, highlighting the importance of embodied experience in understanding outcome and need. Maintaining continuity was draining: exhaustion precipitated fracture and thus need for external help to restore continuity. By focusing on feelings associated with overall narrative form, rather than individual disruptive events, we highlight the context in which disruptive events are experienced, and individual perceptions of their relative importance. We conclude that combining narrative and emotion offers new insights into the value of understanding of biographical accounts of illness in the context of individual creative capacity. We discuss the possibilities for new approaches to clinical assessment and management of need.

Aim: To describe the impact of interactions with health care professionals revealed by people’s accounts of living and dying with cancer; to explore reasons for the observed effects; and thus, to consider the implications for practice. Background: The importance of practitioner–patient interactions is enshrined within professional values. However, our understanding of how and why the consultation impacts on outcomes remains underdeveloped. Stories recounted by people living and dying with cancer offer important insights into illness experience, including the impact of contact with health services, framed within the context of the wider social setting in which people live their lives. From our recent study of distress in primary palliative care patients, we describe how people’s accounts revealed both therapeutic and noxious effects of such encounters, and discuss reasons for the observed effects. Method: A qualitative study with a purposive sample of 19 primary palliative care patients: (8 men, 11 at high risk of depression). In-depth interviews were analysed using the iterative thematic analysis described by Lieblich. Findings: Living with cancer can be an exhausting process. Maintaining continuity of everyday life was the norm, and dependent on a dynamic process of balancing threats and supports to people’s emotional well-being. Interactions with health care professionals were therapeutic when they provided emotional, or narrative, support. Threats arose when the patient’s perception of the professional’s account of their illness experience was at odds with the person’s own sense of their core self and what was important to them. Our findings highlight the need for a framework in which clinicians may legitimately utilize different illness models to deliver a personalized, patient-centred assessment of need and care. The work provides testable hypotheses supporting development of understanding of therapeutic impact of the consultation.

Objective: To review the literature on depression in palliative care patients to identify implications for development of clinical practice and individual patient care. Method: A qualitative review of depression prevalence studies in palliative care settings. We explore the utility of existing prevalence studies for clinical practice through testing two hypotheses: that high prevalence rates are associated with increased risk factors in study samples, and that poor methodological quality of the studies artefactually inflate prevalence estimates. Eighteen studies were identified in the search and included in this review. Results: Risk factors may contribute to depression prevalence but through a complex interaction of factors making individual risk levels hard to determine. Measurement artefact cannot, alone, account for elevated levels of depression in this population but may contribute to imprecision. The importance of organic decline as a potential confounding variable is highlighted. Conclusion: Future research into the causes and prevalence of depression should adopt longitudinal approaches using large samples, and consider the impact of organic disorder as an important confounding factor. Clinical practice and care of individual patients may be better supported by development of a prognostic index considering the predictive power of depressive symptoms and risk factors on well-being.

1. Setting the context - What do we mean by psychosocial care in palliative care? 2. Communication issues 3. Social impact of advanced metastatic cancer 4. Family-centred care: psychosocial care for the marginalized 5. Current provision of psychosocial care within palliative care 6. Anxiety and adjustment disorders 7. Diagnosis, assessment, and treatment of depression in palliative care 8. Psychotherapeutic interventions in palliative care 9. Complementary therapies 10. Spiritual care 11. Bereavement care and hope 12. Staff support

Background Children whose parents are diagnosed with advanced cancer are found to experience high levels of distress. Research has reported communication and information as some of the factors that may contribute to levels of distress in children. There is little research however, regarding what type of information and what level of communication children consider important. Aims This study explored children's information needs and where and how or by whom they wanted to gain the information when a parent is diagnosed with advanced cancer. This was done in order to identify any unmet needs as well as to identify barriers that may exist in children accessing knowledge. Method Semi-structured interviews were conducted with ill (advanced cancer) and well parents and/or any children above the age of 7. Interviews were recorded and transcribed fully, and analysed using a constructionist grounded theory approach. Results Twenty eight family participants were interviewed. Children described wanting honest information about parents health and treatment. Girls expressed a particular need for information regarding implications for their own health and possible future tests. Children described wanting information from a variety of sources including parents, health professionals, books, leaflets, and the internet. They expressed a need to have access to somebody who understood and who would keep their conversation confidential. Problems described in relation to accessing the desired amount of information and communication included not wanting to upset parents by asking them, not having access to professionals, and age inappropriate information. Parents identified informing children of their diagnosis and children's questions and concerns as their main challenge. Discussion The study suggests that improving communication within and outside of the family system will be beneficial to children whose parents have been diagnosed with advanced cancer. It suggests that such an improvement will increase support available to children and will impact on how children are able to cope with their situation.

It is widely recognised by clinicians that depression is a difficult symptom to identify amongst patients with advanced illness. Many of the symptoms of depression are difficult to elicit in patients who are approaching the end of life. Additionally, many believe that a 'degree' of depression is almost normal as patients approach life's end. More recently the concept of demoralization as a separate entity to depression has been described which can be briefly described as a disorder of meaning and hope. In this paper, we review these diagnoses together with the latest screening tools which can help clinicians to recognise better such pathologies in their patients and discuss interventions that can be utilised to help patients with depression or demoralization to have a better quality of life.

Brain death is a traumatic and sudden event following a severe injury to the brain. Most patients with brain death spend the last days of life in an intensive care unit (ICU), where some families will be approached to ask for organ donation. This qualitative study was carried out with relatives of patients who had died of brain death in an ICU; all relatives were interviewed six months after the death. Twenty ICUs were recruited for this study. The next of kin of 130 patients who died during the study period were approached, and 30 (22%) agreed to be interviewed; one later withdrew. This paper focuses on the perceived palliative care needs of the 29 families. Participants valued the physical care their relatives had received, but communication and breaking bad news was a cause for concern. The facilities on many ICUs, for example, cramped relatives' rooms and little privacy to be with the patients or to say the final goodbye, was a common theme to emerge. Bereavement follow-up did not routinely occur, and this was an identified factor noted by relatives. Families living through the period of brain death in a loved one may have particular needs in terms of end-of-life care and should be offered the support of a palliative care team through the last days of a patient's life and into the period of bereavement. Staff training on how to communicate bad news also should be implemented as a matter of urgency. © 2009 U.S. Cancer Pain Relief Committee.

Objective Depression is common in patients with late stage cancer. This study was carried out to investigate whether depression is associated with survival, measuring physical symptoms as a potential confounding variable. Patients and methods One hundred and thirty two patients formed the study sample and eighty-seven patients participated in the study. The Edinburgh Depression Scale (EDS) and self-rated symptoms list were completed three times over an eight-week period and analyzed, together with relevant demographic and clinical factors. Results Depression was self-rated in 29% (25/87) of patients at the initial screen and 54.5% of surviving patients remained depressed at eight-week follow-up. No significant associations were found between baseline EDS ‘caseness’ and demographic factors or tumour type. However EDS scores were significantly correlated with four symptoms measures. Sixty two percent (54/87) of patients died during the 12 month period of the study. The EDS score had a significant independent effect upon risk of death in study period — a one-point increase in EDS score raises risk of outcome (death) by 7%. Conclusions Depression is an independent predictor of poor survival in patients with advanced cancer. It is important that patients with advanced cancer are screened for depression and appropriate interventions offered.

Palliative care research highlights depression as a common, treatable condition in patients with terminal cancer. Guidance from the European Association for Palliative Care calls for proactive screening and treatment of the disease. However, prevalence of depression among primary care patients with advanced cancer is unknown and it remains uncertain whether existing guidance is appropriate for use by GPs.To estimate the prevalence of depression in a primary care population with terminal cancer.A two-stage community prevalence survey conducted in primary care practices in Merseyside, UK. Adult patients with advanced metastatic cancer were invited to join the study. In phase 1, a depression screening tool (the Edinburgh Depression Scale [EDS]) was used to categorize patients as being high or low risk of depression. In phase 2, samples from each group underwent a diagnostic assessment using the revised Clinical Interview Schedule. Weighted prevalence estimates were calculated.In a final sample of 70 (response rate 47.9%), the prevalence of depression was 4.1% (95% confidence interval 0-8.8%). The sensitivity and specificity of the EDS were poorer than predicted.The prevalence of depression in our sample was lower than expected given findings from previous studies. Screening tools also performed differently in this population. The limitations in our study are discussed; however, our findings raise questions about whether depression guidance from palliative care studies can be directly applied to a primary care setting. We propose the need for development of a primary palliative care evidence base to underpin appropriate clinical care.

Background Public health approaches to end of life are a relatively recent development; hence research methodology in this area is also being developed. Aim A workshop for practitioners and researchers describing methodologies used by an end of life public health programme to develop and test interventions and assess the needs and potential for success of further work. Methods During the workshop we will describe the methodologies used in a programme which aimed to reframe death and loss as social event and additionally included participatory approaches and engaging communities. Mixed methods approaches of direct observational methods, longitudinal questionnaire surveys to determine both immediate and sustained effectiveness of interventions and also semi-structured interviews will be described. The workshop will present this work, reflect on other methodologies that could be used; discuss what worked well and not so well, and encourage discussion of other people’s research in this area and further development. The importance of retention and follow up of participants will be discussed as will issues regarding qualitative interviewing in this area and further interventions regarding how participants can be encouraged to share their thoughts and ideas re public health and palliative care thereby helping to shape the practical and research agenda. The subject and value of evaluation as opposed to research will also be discussed. Conclusion At the end of this workshop, researchers and practitioners wishing to evaluate and research their programmes will have gained a better understanding of the theoretical and practical applications of research and evaluation.

All doctors are required to undertake Continuing Professional development (CPD)--for good practice and for the purposes of annual appraisal and re-validation. The medical workforce in palliative medicine is diverse. Many doctors work on a part time basis, with the same CPD requirements as those working fulltime. This survey was undertaken: to establish whether doctors had fulfilled their CPD requirements in the year 2001-2002 and to identify problems or difficulties experienced by doctors in undertaking CPD. A questionnaire was sent to all doctors known to be working in non-training posts within palliative medicine in October 2002, requesting information on CPD undertaken between 1 April 2001 and 31 March 2002. Questions were also asked regarding knowledge and understanding of appraisal and revalidation. The response rate was 53% (381/721). Palliative medicine was the main post for 276 (72%) respondents and 169 were on the specialist register (44%). The subgroup most likely to have fulfilled CPD requirements were those on the Specialist Register (64%), and those least likely were those holding a contract with a charitable organisation (33%). Less than half of those not on the specialist register understood CPD and revalidation requirements. Overall, only 43% of respondents were meeting CPD requirements (median 25 credits; range 5-375 hours). This study has highlighted widespread barriers to the successful planning, participation in, and recording of, CPD for palliative medicine doctors, with those who are not on the specialist register appearing to be particularly disadvantaged. Individual doctors' information needs need to be addressed, but organisational support for CPD is also required. We believe many of these issues also apply in other specialities.

Although comparatively few people have regular contact with a church or spiritual leader, during times of terminal illness or bereavement, clergy are expected to be available and able to provide support. This study was carried out to determine the perceptions of clergy on the training they had received in supporting the dying patient and the bereaved. A sample of clergy working in the diocese of Sheffield was sent a questionnaire to assess what skills and knowledge clergy believed they had in this area, together with areas where they would wish for further training. The questionnaire was developed with input from hospital, hospice, and academic chaplains, and palliative care consultants. A subsidiary questionnaire was sent to clergy training colleges to evaluate the teaching offered. There was a trend across all denominations that those who had trained more recently were more likely to have received relevant training. Most clergy believed that they possessed adequate liturgical skills, but 13% felt they possessed none or little skill in pastoral care of the dying. Seventy-one percent indicated that they would like further training in pastoral care of the dying and 66.3% desired training in care of the bereaved. Of the 50% of training colleges that responded, the number of hours of training on pastoral care of the dying ranged from 6 to 36 hours (median 23 hours and mean 25 hours) and only 26% believed that their training in pastoral support skills was comprehensive. This study suggests that care of the dying and the bereaved is identified by clergy as an area in need of further training by the majority of clergy and should be part of the core curriculum within clergy training colleges and late training programs.

The majority of people who are bereaved will work through their grief with support from family and friends. Over 30%, however, may require professional support, and studies have shown that most people contact their General Practitioner and primary health-care team for counselling/support. Effective support and counselling can also be given by voluntary agencies. It was decided to audit the referrals made to a bereavement service for bereavement counselling to ascertain the level of support given prior to the referral and whether information had been given to the bereaved regarding the services available to them in the voluntary sector. Twelve referrals were received in the allotted time period, 10 of which were made within the first year of bereavement. Only one referral had been offered counselling by the primary health-care team and one other had been informed of voluntary bereavement support/counselling agencies. Two referrals had abnormal grief reactions requiring psychiatric intervention. Conclusions include raising the awareness of general practitioners and primary health-care teams of the normal grieving process, and increasing the provision of support for the bereaved. It is also suggested that the bereaved are made more aware of the services that voluntary agencies can provide.

Depression is a significant symptom for approximately one in four palliative care patients. This study investigates the performance of three screening tools. Patients were asked to verbally rate their mood on a scale of 0-10; to respond "yes" or "no" to the question "Are you depressed?," and to complete the Edinburgh depression scale. They were also interviewed using a semi-structured clinical interview according to DSM-IV criteria. Complete data was available for 74 patients. For the single question, a "yes" answer had a sensitivity of 55% and specificity 74%. The Edinburgh depression scale at a cut-off point of > or =13 had a sensitivity of 70% and specificity of 80%. The verbal mood item with a cut-off point of > or =3 had a sensitivity of 80% and specificity of 43%. The Edinburgh depression scale proved to be the most reliable instrument for detecting clinical depression in palliative care patients.

All medical schools in the U.K. now include teaching in palliative care in the undergraduate curriculum, and this is mirrored in Europe and the U.S.A. In South Africa, however, palliative care education and provision are not widely available. An increasing number of medical and nursing staff are invited to teach palliative care in other countries. Such teaching should, however, take into account the cultural attitudes the students have towards the care of patients with a chronic or terminal illness. Nineteen statements on attitudes were constructed, and medical students in Leicester, U.K., and in Medunsa, South Africa, were invited to respond to them using a 10-point Likert scale. The questionnaire was distributed before either cohort of students had received any teaching in this area. Students in South Africa were significantly more likely to want to work in a speciality where most patients were likely to be cured (p

Background: Palliative care is an integral part of the general practitioner's role and palliative care teaching and training should be available for GP registrars during vocational training. Aim: This study was carried out to evaluate the content, amount and nature of generic palliative care teaching during vocational training in the UK. Method: A postal questionnaire survey of all course organizers enquired as to whether palliative care teaching was included in the core training sessions; professional background of the teachers; teaching methods used; whether the local hospice was used as a resource and whether GP registrars were able to choose a post in a hospice within their training scheme. Results: Three hundred and seventy-seven questionnaires were distributed and 240 were returned completed – a 64% response rate. A total of nine one-year schemes replied that they did not include any teaching in palliative care – the median amount of teaching given for one-year schemes was 4.75 hours and nine hours for the three-year schemes. Statistically significant diferences were found in teaching on psychosocial issues and bereavement between one and three-year schemes. Less than half of all schemes included teaching on financial issues related to palliative care. Several schemes cited difficulties in accessing hospice placements and in accessing hospice medical staff to provide teaching. Conclusion: There is wide disparity in both the amount and content of teaching about palliative care within UK vocational training schemes. Difficulty in accessing placements within hospices and in accessing staff from such units to undertake teaching may be a barrier to effective and comprehensive palliative care teaching for doctors working in primary care. We suggest that a national generic curriculum of palliative care within primary care be implemented.

This paper describes consultation provided by the University of Leicester to the Medical University of Southern Africa (Medunsa) funded through British Council and the Department for International Development to develop a course addressing issues of diversity at Medunsa. The aims of the link were essentially for Leicester to provide support and guidance on the development of a specific module. This inevitably included the provision of training in key areas such as teaching skills and evaluation of teaching. This paper focuses on the potential difficulties of such a link, which included cultural differences, issues of hierarchy and student influence. The project outcomes have been the development of a coherent module on human diversity which is assessed in such a way as to support the development of student writing skills, increased staff teaching skills and a joint conference to disseminate the learning that has taken place from the project.

Depression is a serious problem that affects about a quarter of patients in palliative care.1 Diagnosing depression is difficult because most patients are understandably sad. Lack of recognition of depression can lead to further morbidity and a detrimental effect on the quality of life.2 Screening for depression attracts wide interest, but as patients are frail and unwell, a screening tool needs to be brief. Asking North American patients in palliative care the single question, “Are you depressed?” had perfect sensitivity and specificity and 100% positive predictive value compared with the schedule for affective disorders.3 Other studies of patients with stroke and elderly patients found that a single statement with a “yes” or “no” response correctly classified …

Depression is a significant symptom for many palliative care patients, but is difficult to diagnose and therefore treat. In an effort to improve detection, there has been increasing interest in the use of screening tools. Many tools, however, have been developed for physically well patients and it is important that tools are validated for the populations in which they are used. The present study was carried out on behalf of the Association of Palliative Medicine, Science Committee, to assess the available evidence for using screening tools in palliative care. The single question ‘Are you depressed?’ was the tool with the highest sensitivity and specificity and positive predictive value. Where the Hospital Anxiety and Depression Scale and the Edinburgh Depression Scale are used, the validated cut-off thresholds for palliative care patients should be employed. Patients who report thoughts of self-harm or suicide need prompt assessment and evaluation.

Over 90% of hospital beds are occupied by patients with a chronic life threatening illness and many of these patients require palliative care. Nurses have an important role in the provision of palliative care and this paper reports a study aimed at finding how much teaching is given in palliative care during undergraduate nurse training. A short questionnaire containing open questions and inviting further comments was sent to senior tutors co-ordinating entry level degree and diploma nursing courses as listed in NABMS and UCAS handbooks. One hundred and eight questionnaires were sent and the overall response rate was 40% with approximately equal numbers of diploma and degree courses responding. Diploma students received a mean of 7.8 h (range: 2–26 h) and degree students 12.2 h (range: 3 to 42 hours) of teaching in palliative care, compared to the mean of 20 h teaching offered to undergraduate medical students in the UK. Teaching was mainly theoretical and rarely formally assessed. Tutors identified the lack of suitably skilled staff to teach palliative care and the shortage of placements for nursing students within a palliative care setting as particular difficulties. The need for nurses who are skilled in the principles of palliative care will increase with the recognition of application of palliative care to non-oncology patients. This paper suggests it is important that all nurses are given some teaching in this area.

Dementia is a progressive terminal disease. More than 95% of patients will require 24-hour care either in long-stay hospital wards or in nursing homes at the end of life. There are many issues in the care of patients with dementia that parallel palliative cancer care, but relatively few patients with dementia currently access palliative care. Following an initial audit that found that many patients dying with dementia had symptoms that were not palliated, multidisciplinary guidelines were developed jointly by medical and nursing staff working in psychiatry for older people, together with pharmacy and palliative care staff. Following the implementation of guidelines, there was a significant decrease in the prescribing of antibiotics in the last 2weeks of life and patients were much more likely to be prescribed analgesia, including opiates. This small study suggests that when developed collaboratively, multidisciplinary guidelines can have a positive impact on palliative care for non-oncology patients.

Much work on the role of general practitioners within palliative care has focused on those working in densely populated inner city areas. This study was undertaken to evaluate the provision of palliative care and training needs of general practitioners in North Wales, a predominantly rural area. Questionnaires were sent to all 240 GPs and 94 responded (40%); those GPs responding were younger and mainly worked within partnerships. During the preceding year a median of four terminally ill patients had been cared for by each GP (range 0-21). General practitioners believed that palliative care was an important part of their role and applicable to patients with all end stage diseases. Use was made of community hospital beds as these were perceived as being more convenient for the patients and allowed the GPs to continue their involvement in patient care. Where services--e.g. palliative care consultants, day care and Marie Curie care--is available this was perceived as being very useful and of benefit. General practitioners believed they would benefit from further education and teaching on all aspects of palliative care, and this was supported by just over 50% of doctors knowing the correct breakthrough doses of morphine and many stating they would not prescribe more than a certain dose of opiates. Training in palliative care during vocational training was poor or non-existent and a preference was expressed for experiential teaching.

Background Qualitative longitudinal methods, used successfully for research in chronic conditions, can potentially unpick the dynamics of coping with advanced cancer as both a skillset and process. Studies in palliative care commonly suffer from high attrition and raise challenges when exploiting the richness and utility of longitudinal data. Aims To develop longitudinal methodology by learning from a successful study exploring how and when patients with advanced cancer and their informal carers develop coping strategies. Methods 54 participants (n=27 patients, n=27 nominated carers) were recruited to a qualitative longitudinal serial interview study. Using a core topic guide and a semi-narrative, conversational format, two interviews with each participant (n=86 interviews) were scheduled 4–12 weeks apart to encompass a range of everyday challenges and life events. A multidimensional approach combined thematic coding and framework analysis to compare patients, carers, dyads and interview points. Results Researcher sensitivity, responsiveness and planning of second interviews resulted in low attrition between interviews (7.5%). Interviews were welcomed by participants and their timing was central to understanding how and when participants9 developed coping strategies. Participants could reflect in ways which opened up the ‘black box’ of lived experience and researchers9 were able to develop more relevant follow-up questions. This assisted participants to articulate how, why and when they had (or had not) developed particular coping strategies. Conclusions Supporting the development of coping strategies which benefit patients and carers is both imperative and time critical in palliative care. This study shows that longitudinal qualitative research is valuable when exploring the complex ‘everyday realities’ of lived experience which are fundamental to quality of life but often develop, unremarked, over time. By integrating opportunities for participant reflection and focusing on ‘change over time’ this study was able to explore deeper patient-centred insights on which to develop robust evidence-based practice.

Background Family caregivers of patients with cancer and other advanced progressive illnesses, especially during the final year of life, can incur increasing burden, affecting their health, ability to care and likelihood of hospital admission for the patient. It is essential carers9 needs are assessed to alert health and social care professionals to their increasing level of burden and trigger additional support. This multi-phase study developed and piloted a Carers9 Alert Thermometer (CAT), for use by the generalist healthcare workforce, to alert staff to increasing carer burden and provide guidance on appropriate interventions. Aim of the study To gain consensus on the most important burdens raised by carers for inclusion in the CAT (Phase 1) subsequently rated and ranked by professionals and carers (Phases 2 and 3). Methods Phase 2: A two-round Delphi survey was conducted with carers, health and social care professionals and organisations supporting carers. Round 1 involved 44 burdens in eight main themes. Round 2 contained 29 burdens which had been rated as ‘extremely important’ or where a high level of disagreement between carers and professionals existed. Phase 3: A virtual panel, comprised of carers together with professionals from national and regional organisations with strategic roles in end-of-life care and carer support, commented on the Delphi findings ranking their top 10 burdens for inclusion in the CAT. Results There was a high level of agreement between the professionals and carers on the main burdens for inclusion in the CAT. Understanding the current caring situation and supporting carer9s health and well-being were the main priorities. Interestingly, end-of-life planning was ranked lowest by both groups. Conclusions Despite the complex needs of carers clear consensus on the main burdens exists which can be utilised in an alert tool to identify increasing burden and guide appropriate targeting of support and resources.

Introduction This research explores the experience of uncertainty and reassurance from the perspective of family carers. Aim(s) and method(s) To explore the phenomenological experience of providing end of life care for a family member with a life-limiting illness, at home. Fifty-one narrative interviews were conducted with bereaved family carers. Data was analysed using thematic structural analysis (Robichaux 2003; Riessman 2008). Results Uncertainty emerged as a key feature of the caregiving experience. Many carers were invited by community health care professionals to ‘ring us if you need us’. However, carers explained that they were reluctant to telephone about non-emergency issues. In some cases, this led to feelings of isolation, uncertainty about pain and symptom management and uncertainty as their relative approached death. By contrast, carers explained that they would feel more reassured if they had received additional contact from health and social care professionals to ‘check up’ on them and ‘see how they were doing’. Additionally, scheduled visits from community and district nurses were a great source of reassurance to many carers. Feelings of uncertainty were greatest in the days and hours approaching their relative9s death. Conclusion(s) Health care professionals working in the community may have limited awareness of the important impact that their presence has in reassuring family caregivers and improving their confidence in caring. In addition, increased informal contact made by health and social care professionals may reduce carers9 uncertainty in providing end-of-life care at home.

Depression is difficult to diagnose in the terminally ill patient. As a result, it frequently is not treated. This has can have an adverse effect on quality of life and make the palliation of physical symptoms more difficult. In an effort to improve the detection of depression, many palliative care teams are using the Hospital Anxiety and Depression (HAD) scale as a screening tool. The HAD was devised for use in general medical settings and has not been validated for use in palliative care patients. One hundred patients receiving palliative care with an estimated prognosis of 6 months or less were invited to complete the HAD and a semi-structured psychiatric interview, the Present State Examination. The depression and anxiety subscales of the HAD showed poor efficacy for screening when used alone. The optimum threshold was at a combined cut-off of 19, which had a sensitivity of 68% and specificity of 67%. The major construct of the HAD is anhedonia, which may be present at the end of life due to increasing physical illness and may not be pathognomic of a depressive illness in this population. We recommend, therefore, that if the HAD is used as a screening tool in palliative care, it should be as a combined scale, but low sensitivity and specificity may lead to poor efficacy as a screening tool.