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Background: More people are dying at home with dementia and Alzheimer’s disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services. Aim: To explore informal caregivers’ views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/Participants: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life. Results: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy. Conclusions: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.

ObjectivesIn lung cancer, three prominent symptoms, such as breathlessness, cough and fatigue, are closely related with each other forming a ‘respiratory distress symptom cluster’. The aim of this study was to determine the clinical and cost-effectiveness of the respiratory distress symptom intervention (RDSI) for the management of this symptom cluster in people with lung cancer.MethodsA single blind, pragmatic, randomised controlled trial conducted in eight centres in England, UK. A total of 263 patients with lung cancer were randomised, including 132 who received RDSI and 131 who received standard care. To be eligible, participants self-reported adverse impact in daily life from at least two of the three symptoms, in any combination. Outcomes were change at 12 weeks for each symptom within the cluster, including Dyspnoea-12 (D-12), Manchester Cough in Lung Cancer (MCLC) and Functional Assessment of Chronic Illness-Fatigue.ResultsAt baseline, nearly 60% of participants reported all three symptoms. At trial completion the total trial attrition was 109 (41.4%). Compared with the control group, the RDSI group demonstrated a statistically significant improvement in D-12 (p=0.007) and MCLC (p3), MCLC −5.49 (MCID >3) and FACIT-F 4.91 (MCID >4).ConclusionRDSI is a clinically effective, low-risk intervention to support the management of the respiratory distress symptom cluster in lung cancer. However, the study did experience high attrition, which needs to be taken onto consideration when interpreting these results.Trial registration numberNCT03223805.

Purpose of reviewCognitive impairment is increasing in an ageing population and as people live longer, they are more likely to develop cancer therefore cognitive impairment and cancer are frequently co-occurring. We reviewed articles published since 2018 on cognitive impairment and cancer.Recent findingsThe current review has focused on diagnosis, treatment and palliative and end of life care. A comprehensive systematic review reported joint cancer and cognitive impairment prevalence from 0.2 to 45.6%. The review reported there was reduced likelihood of patients with co-occurring cognitive and cancer receiving information regarding cancer stage, reduced cancer treatment with curative intent and limited pain and symptom management. Further studies emphasized the role of family carers in supporting patients with cognitive impairment through cancer treatment.SummaryDisappointingly in an area where the numbers of patients with cognitive impairment and cancer are increasing, there appears to be little recently published research in this area. We conclude that further research is required to determine how best to support patients with cognitive impairment and cancer and families during diagnosis of cancer, treatment and continuing care and most importantly the findings of all studies are implemented within clinical practice.

COVID-19 has brought death and dying to the forefront, yet dementia is the most common cause of death in men and women older than 80 years Studies predict that deaths from dementia will increase from around 59 000 per year in 2014 to around 220,000 per year by 2040 This study reflects that a vital organisational response in their management of COVID-19 for families affected by dementia would provide better support for family carers to help maintain resilience and psychological and mental wellbeing The UK is arguably in a good position by having existing services to provide such support Admiral Nurses are specialists in dementia care who use a case management approach to support the whole family unit affected by dementia, from the point of diagnosis to end-of-life care, and provide continued support of family carers in bereavement

ObjectiveThis study sought to compare the Hospital Anxiety and Depression Subscale (HADS-D) and Brief Edinburgh Depression Scale (BEDS) as case-finding tools of major depressive disorder in patients with advanced cancer in a palliative care service.MethodsAn observational study was performed which included patients with advanced cancer who attended the palliative care service at the National Institute of Cancer in Mexico. Patients were asked to fill out the Hospital Anxiety and Depression Scale (HADS) and BEDS and were then assessed by a psychiatrist to evaluate major depressive disorder (MDD) as per the DSM-5 criteria. The case-finding capability of each scale was determined using receiver operating characteristic curves, assessing the area under the curve (AUC) in comparison to the clinical diagnosis.ResultsEighty-nine patients were included; median age was 57 years, and 71% were female. Among these, 19 patients were diagnosed with MDD during the interview. When comparing the self-reported scales, BEDS had a better performance compared with HADS-D (AUC 0.8541 vs. 0.7665). Limitations include a heterogeneous population and a limited sample size.Significance of resultsThe BEDS outperformed the HADS-D tool in discriminating patients with and without depression. A BEDS cutoff value of ≥5 is suggested as a case-finding score for depression in this population.

Background Advanced cancer affects people’s lives, often causing stress, anxiety and depression. Peer mentor interventions are used to address psychosocial concerns, but their outcomes and effect are not known. Our objective was to determine the feasibility of delivering and investigating a novel peer mentor intervention to promote and maintain psychological wellbeing in people with advanced cancer. Methods A mixed methods design incorporating a two-armed controlled trial (random allocation ratio 1:1) of a proactive peer mentor intervention plus usual care, vs. usual care alone, and a qualitative process evaluation. Peer mentors were recruited, trained, and matched with people with advanced cancer. Quantitative data assessed quality of life, coping styles, depression, social support and use of healthcare and other supports. Qualitative interviews probed experiences of the study and intervention. Results Peer mentor training and numbers (n = 12) met feasibility targets. Patient participants (n = 12, from 181 eligible who received an information pack) were not recruited to feasibility targets. Those who entered the study demonstrated that intervention delivery and data collection were feasible. Outcome data must be treated with extreme caution due to small numbers, but indicate that the intervention may have a positive effect on quality of life. Conclusions Peer mentor interventions are worthy of further study and researchers can learn from these feasibility data in planning participant recruitment and data collection strategies. Pragmatic trials, where the effectiveness of an intervention is tested in real-world routine practice, may be most appropriate. Peer mentor interventions may have merit in enabling survivors with advanced cancer cope with their disease. Trial Registration The trial was prospectively registered 13.6.2016: ISRCTN10276684.

Purpose of reviewDementia is now recognized as a progressive life-limiting illness where many patients can benefit from access to palliative care.Recent findingsThe present review has focused on three areas namely, advanced care planning in supporting palliative care for dementia, hospice provision for people with dementia and provision of care within family home. In advanced care planning, there is little research on systematically developed and implemented advance care planning interventions or whether they achieve desired outcomes for end-of-life care. There is limited research on hospice-based care for patients with dementia and most studies are U.S. based. Equally studies exploring how family carers can be supported and facilitated to care at home for the person with dementia to the end of life are exploratory rather than determining what factors may be important.SummaryThere are relatively few studies, especially quantitative studies or intervention studies being carried out to determine most effective means of providing palliative care for people with dementia, particularly with respect to advanced care planning, the provision of hospice-based care and support at home. Despite increased public awareness of dementia as a terminal illness, more research is required to support patients with dementia and their families at the end of life.

ObjectiveDepression in palliative advanced cancer patients is common, but often goes unrecognized. One of the first steps toward improving detection is the development of tools that are valid in the specific language and setting in which they are to be used. The Brief Edinburgh Depression Scale (BEDS) is a sensitive case-finding tool for depression in advanced cancer patients that was developed in the United Kingdom. There are no validated instruments to identify depression in Mexican palliative patients. Our aim was to validate the Spanish-language version of the BEDS in Mexican population with advanced cancer.MethodWe conducted a cross-sectional study with outpatients from the palliative care unit at the Instituto Nacional de Cancerología in Mexico City. The Mexican BEDS was validated against a semistructured psychiatric clinical interview according to the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, classification criteria for major depressive disorder. The interviewer was blind to the BEDS score at the time of the assessment.ResultSeventy subjects completed the scale and interview. Women represented 71.4% of the sample and median age of subjects was 56.5 years (range, 20–85 years). The prevalence of major depressive disorder according to the psychiatric interview was 20%. The most valid cutoff for defining a case of depression was a score ≥5 of 18 on the Mexican BEDS, which gave a sensitivity of 85.7% and specificity of 62.5%. The scale's Cronbach's alpha was 0.71.Significance of resultsMajor depressive disorder is frequent in Mexican palliative patients. The Spanish-language Mexican version of the BEDS is the first valid case-finding tool in advanced cancer patients in this setting.

Purpose: To design and evaluate an intervention to address carers’ needs for practical information and support skills when caring for a person with cancer at end of life. Method: Phase I 29 carers were interviewed about need for practical information, support skills and their preferences for information delivery. The preferred format was a booklet. Phase 2 evaluated the booklet. 31 carers and 14 district nurses participated. Validated questionnaires: on perceptions of caregiving and carer health before and after the booklet was used and interviews with both carers and nurses were untertaken.24 carers completed both interviews. Quantitative data were coded using scale manuals and analysed using SPSSv20 and interview data was analysed thematically. Results: Carers were aged 31-82 and cared for people aged 50-92; 8 carers were male and 23 female; 20 cared for a partner, 8 for a parent and 1 for a sibling (2 undisclosed). Carers were positive about the booklet, however many carers would have liked the booklet earlier. Carers reported feeling more positive about caregiving, and more reassured and competent in their role. District nurses found the booklet useful and reported receiving fewer phone calls from study carers than others in similar situations. Conclusions: The booklet intervention was a source of reassurance to carers and it has the potential to be incorporated into everyday practice. The challenge is in when and how to distribute the booklet and more work is required on the timing of delivery in order to maximise the usefulness of booklet to carers.

Background The background literature suggests that recruiting patients with advanced cancer from hospice day care to participate in a research study may be challenging. Aim This paper describes such challenges and considers whether those faced by researchers in this study reflect those recorded in the literature. Method Six hundred and twenty-six patients with advanced cancer from hospice day care units in the north-west region of England were recruited as part of a multi-centre mixed methods study to determine the prevalence, aetiology, and natural history of depression and demoralization. Results A number of challenges were reported (i) data collection sometimes presented researchers with ethical dilemmas, although the ability to respond appeared to be influenced by disciplinary background and training, (ii) emotional impact of the research may force researchers to face a variety of emotional responses, and (iii) dilemmas relating to the setting and maintenance of role boundaries included determining th...

Summary Objective To explore the individual experiences of those who had experienced the death of a parent(s) before the age of 18, and investigate how such experiences were perceived to impact on adult life. Design An exploratory qualitative design using written (n = 5) and oral (n= 28) narratives and narrative analysis was adopted to explore the experiences 33 adults (7 men and 26 women) who had experienced parental death during childhood. Setting UK Participants Individuals living in the North West of England who had lost a parent(s) before the age of 18. Main outcome measures Views of adults bereaved of a parent before the age of 18 of impact of parental loss in adult life. Results While individual experiences of bereavement in childhood were unique and context bound, the narratives were organized around three common themes: disruptions and continuity, the role of social networks and affiliations and communication and the extent to which these dynamics mediated the bereavement experience and the subsequent impact on adult life. Specifically they illustrate how discontinuity (or continuity that does not meet the child's needs), a lack of appropriate social support for both the child and surviving parent and a failure to provide clear and honest information at appropriate time points relevant to the child's level of understanding was perceived to have a negative impact in adulthood with regards to trust, relationships, self-esteem, feeling of self-worth loneliness and isolation and the ability to express feelings. A model is suggested for identifying and supporting those that may be more vulnerable to less favourable outcomes in adult life. Conclusions The findings suggest that if the negative consequences are to be minimized it is crucial that guidelines for ‘best practice’ that recognize the complex nature of the bereavement experience are followed.

Background Spirituality is an important component of palliative care that is incorporated into practice and the subject of research. A literature review by the authors indicated that many studies into the spiritual needs of palliative care patients operationalised highly reductive constructs of spirituality and relied upon unexamined assumptions and concepts. Methods We examine the use of models as a strategy to explain how spirituality functions in the lives of patients and critically review examples of descriptive modelling and mathematical modelling. The explanatory and predictive potential of these techniques is considered along with methodological limitations in representing complex aspects of human nature in models. Proposal We propose a realistic synoptic model to explain how spirituality is lived and experienced in the wider context of a mental, personal and social world. We describe the essential conceptual apparatus and mechanisms of lived spirituality including beliefs, behaviour and experience, and we suggest that spirituality is a feature and capacity of the system as a whole. Conclusions The synoptic model provides an explanation of how spirituality operates in the totality of patients9 lives and aims to capture aspects of spirituality that remain neglected by researchers and practitioners. It is proposed as a corrective to reductionist approaches and supports the contribution of different disciplines and different ways of thinking about spirituality.

IntroductionDepression is a frequent symptom among cancer patients but is rarely identified. The Brief Edinburgh Depression Scale (BEDS) is widely used within the United Kingdom to screen for depression among patients with advanced cancer, but its use elsewhere is limited by the lack of appropriate translations. We translated the BEDS into French and then validated the translated version with and assessed its acceptability by cancer patients in France.MethodsWe used back-to-back translation and standard European Organization for Research and Treatment of Cancer procedures to translate the BEDS into French. The French version was validated against Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) semi-structured psychiatric interviews with 48 patients with advanced cancer who were admitted to a palliative care unit. Acceptability was determined with these inpatients and with 95 outpatients at a Comprehensive Cancer Center.ResultsAmong inpatients, the prevalence of major depress...

Purpose Depression is one of the most common psychiatric diseases seen in patients with advanced cancer. It is not only an independent predictor of poor survival in advanced cancer but also reduces quality of life, reduces compliance with treatment and prolongs hospitalization. Yet all too often depression is under diagnosed and under treated in this population. Method A literature review was undertaken using extensive electronic and hand searches. Key findings Whilst it is true that the diagnostic and treatment challenges facing healthcare professionals in this area are considerable one must not forget that depression in advanced cancer is treatable and validated assessment tools have been developed to facilitate diagnosis. Conclusions This review article provides the reader with a comprehensive review of the current evidence in this field with particular focus on assessment and treatment. Depression is under diagnosed and under treated – there are valid screening and assessment tools available which will allow appropriate management of this important and debilitating symptom.

IntroductionSocial isolation is increasing with negative consequences for both physical and mental health. People with life-limiting illness and their carers are at risk of inadequate social support and loneliness.Hospices support social wellbeing with services including traditional day care support groups befriending multi-component interventions and community activities. Existing research suggests that access to social support is highly valued. However models of support used in practice are poorly documented and outcomes difficult to ascertain. The significance of social support in palliative care is under-researched.AimTo establish an overview of hospice service models that facilitate social support for adults living in the community with life-limiting illness.MethodAn online survey was developed piloted and disseminated to adult hospices in the UK and ROI. Questions include hospice characteristics provision of services facilitating social support access issues use of patient outcomes and availability of cost data.Results107 hospices responded to the survey (>50% of eligible hospices). A diverse range of service models were identified. Preliminary results presented include: descriptive statistics of the sample categories and aims of services and salient access issues. Implications of findings for research and economic evaluation are discussed.ConclusionThis survey demonstrates hospices to be interested and active in facilitating social support. It is possible that increasingly diverse approaches used in practice may improve issues regarding access to and awareness of hospice care. More work is needed to share best practice document outcomes and consider cost-effectiveness.Reference. Bradley N, Lloyd-Williams M, Dowrick C. Effectiveness of palliative care interventions offering social support to people with life-limiting illness – A systematic review. Eur J Cancer Care2018. doi:10.1111/ecc.12837

The objective of this study was to review the literature on depression in palliative cancer care in order to identify which assessment methods and classification systems have been used in studies of depression. Extensive electronic database searches in PubMed, CancerLit, CINAHL, PsychINFO, EMBASE and AgeLine as well as hand search were carried out. In the 202 included papers, 106 different assessment methods were used. Sixty-five of these were only used once. All together, the Hospital Anxiety and Depression Scale (HADS) was the most commonly used assessment method. However, there were regional differences and while the HADS dominated in Europe it was quite seldom used in Canada or in the USA. Few prevalence and intervention studies used assessment methods with an explicit reference to a diagnostic system. There were in total few case definitions of depression. Among these, the classifications were in general based on cut-off scores (77%) and not according to diagnostic systems. The full range of the DSM-IV diagnostic criteria was seldom assessed, i.e. less than one-third of the assessments in the review took into account the duration of symptoms and 18% assessed consequences and impact upon patient functioning. A diversity of assessment methods had been used. Few studies classified depression by referring to a diagnostic system or by using cut-off scores. Evidently, there is a need for a consensus on how to assess and conceptualize depression and related conditions in palliative care.

Introduction: Distress is an important problem in palliative care. However, current models of clinical practice emphasise symptom-focused assessment of need, raising problems with integrating complex, and potentially conflicting, assessments of experience. An alternative perspective views distress as the result of the disruptive impact of illness on people's efforts to continue living their daily lives. We explored whether this account of distress may offer new insights into models of clinical care. Subjects and methods: Qualitative, phenomenographic analysis of interviews with a purposive sample of 19 adults with advanced cancer (eight men, 11 at high risk of depression) to explore experiences of distress in the context of on-going efforts of daily living. Results: Distress resulted from threats to aspects of themselves which mattered most to people. By achieving a balance between these disruptive effects and individual supportive capacity, most people were able to maintain continuity of daily l...

Substantial numbers of patients with advanced disease experience symptoms of anxiety. Left untreated, this anxiety can result in serious physical and psychological consequences for both the patient and their family and friends. Better organisation of services may prevent many patients from experiencing anxiety. A number of treatment options are also available which may alleviate symptoms in those who develop anxiety. These include pharmacological treatments, self-management strategies and complementary therapies. However, the current evidence base for self-management strategies and complementary therapies is limited. It is hoped that research funding bodies and palliative care researchers will work together to address the current gaps within the research evidence base.

Death is universal. Only 37% of adults have a will and 48% have stated their wishes regarding cremation or burial.(1) Planning and communication can help prevent some of the distress associated with dying and bereavement.To evaluate an intervention to encourage people to plan for the end of their life and to communicate their wishes to those closest to them.Two interventions were delivered via community groups: 'Awareness' presentations aimed to raise awareness of benefits of preparing and talking about end of life issues. 'How to' workshops aimed to give people confidence and tools to open relevant conversations. To evaluate their impact, we conducted a 3-stage questionnaire survey; administered before, immediate after and 3 months after events.At baseline (n = 498; 76% female) 76% had previously discussed end of life care or wishes after death. Most were comfortable talking about these subjects, giving a mean score of 8.28/10. At follow-up (n = 133); 60% indicated they had made changes following the event; 43% had talked about their own end of life wishes, 9% for the first time; and 39% reported making other changes. The change in the proportion of people who had ever talked about their own end of life wishes was statistically significant (p = 0.033).Well designed community events can improve planning and communication of end of life preferences among general population.Dying Matters Survey http://www.comres.co.uk/polls/Dying_Matters_Public_April12.pdf.

Background Societal barriers to open discussion of personal feelings and preferences relating to death may hinder planning for end of life and supporting people who are dying or bereaved. Aim To explore views about talking about death, dying and loss. Method Semi-structured interviews were conducted with 31 people; age range 30 to 83 years. Results Making wills and communicating end of life wishes were considered very important; mostly for the sake of the family left behind. Participants also valued confidence to discuss other people’s end of life wishes and support them appropriately if they were dying or bereaved. Many participants were very comfortable talking about their own death. Identified barrier to talking about end of life wishes included not wanting to upset others; others not listening; not being about to find an appropriate moment; not knowing enough about the options available; and fear of death, especially of the unknown. Financial costs were seen as a barrier to making a will. Participants talked of the importance of raising awareness of what death and dying involves; what end of life options available; and the importance of communication. Information on the process of normal grieving and how to support somebody who has been bereaved were also suggested. Conclusion Being able to talk about end of life wishes and know how to support people who are dying or bereaved are important to many people, and they would welcome interventions to facilitate this at a societal level.

Background: There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff.\ud Methods: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers’ Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011–2014).\ud Results: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer’s own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel.\ud Conclusions: The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.

To date, there has been only limited research into the supportive and palliative care experienced by people with cancer and other life-limiting illnesses. There is an urgent need to improve our understanding of the problems faced by people whose lives are changed by serious illness, and to use our knowledge to build better and more responsive programmes of care. The preferences, choices, stories, and voices of those affected by life-limiting illness are now central to the development of more and better research in supportive and palliative care. CECo is a new collaboration between experts from many disciplines and backgrounds that over the next 5 years will work to enhance the quality and impact of research in cancer care by taking a fresh look at some challenging problems. Its goal is to use research evidence to change clinical practice and service organisation in ways that will improve the care of people affected by cancer and other serious illnesses. CECo involves leading universities and professional organisations as well as hospice and cancer services from across England. Its purpose is to raise the standard of research, generate new resources, and foster innovation.

End of life care or palliative care has been acknowledged as important over the last 30 years and it is essential that doctors have core training in palliative care during their undergraduate training. There is little knowledge of the nature of teaching of palliative care within the undergraduate curriculum. This review was undertaken to determine the evidence to create an effective and appropriate undergraduate curriculum in palliative care. All relevant databases were electronically searched from 1966 until 2001 and selected contemporary work included. Key authors were contacted and grey literature and conference abstracts were searched. Efforts were made to quality grade any evaluation studies of teaching, learning and assessment. Two hundred and eighty abstract citations were obtained--192 papers were excluded due to lack of relevance to this study. Eighty-eight abstracts were obtained and forty-nine papers included in the review. There were no randomized controlled trials of educational interventions or open effect studies. All studies included were descriptive and were graded as level of evidence C. The main findings include lack of consistency in what undergraduates are taught about palliative care. Teaching tends to be fragmented, ad hoc and lacks co-ordination. There are difficulties in recruiting appropriate teachers. Palliative care is rarely formally assessed. Teaching focused more on the acquisition of knowledge and skills rather than attitudes. It is suggested that guidelines should be established within each medical school to develop an integrated curriculum for palliative care with due reference to the multidisciplinary nature of palliative care.

Spiritual care is an integral part of palliative care and if asked, most members of a palliative care team would state they address spiritual issues. The majority of hospices have support from a chaplain. This study was to determine the roles of chaplains within hospices and to look at their levels of stress. A questionnaire containing both open and closed questions was sent to chaplains working within hospices in the UK. The questionnaire enquired about number of sessions, specific roles of chaplain, whether they were members of the multidisciplinary team and their sources of internal support. Stress was measured on a 10-point Likert scale and the GHQ12. One hundred and fifteen questionnaires were returned, with a 72% response rate. The majority (62%) defined their denomination as Church of England and Free Church (24%); 71% of respondents had parish commitments in addition to their hospice role. Roles were predominantly defined as spiritual care of patients and staff (95%) and bereavement support of relatives (76%) and 75% regularly attended the multidisciplinary meetings. Senior medical and nursing staff and other chaplains were perceived as providing most support. Median Likert score for stressfulness was 5, and 23% scored at or above the threshold on the GHQ12 for identifiable psychological morbidity. Clear role definition was associated with less perceived stress whereas the provision of bereavement support was associated with statistically significant increased perceived stress. The role of a chaplain within a hospice is varied and this study suggests that the provision of training and formal support is to be recommended.

Depression is a significant symptom for approximately 25% of palliative care patients, but is frequently unrecognized and untreated. This study was carried out to determine how senior doctors working in palliative medicine in the UK assessed and managed depression in their patients. A questionnaire was sent to all palliative care units with a designated consultant or medical director. Questions were asked about assessment and management of depression (pharmacological and nonpharmacological); difficulties encountered, qualifications and current post. The response rate was 63%; two-thirds (90) of respondents were consultants and a further 21 medical directors. The majority (73%) routinely assessed for depression with 27% using the Hospital Anxiety and Depression (HAD) Scale and 10% asking the patient 'are you depressed'? The most frequently prescribed medication was SSRI (80%). Less than 6% prescribed psychostimulants. Respondents reported difficulties with the assessment and management of depression which mainly focused on distinguishing symptoms of depression from sadness and whether it was appropriate to treat patients when life expectancy was short. Difficulties were identified in accessing psychiatric input by 47%. Depression is identified as being a difficult symptom to manage by many senior palliative care physicians in the UK and suggestions are made as to how some of theses issues can be addressed.

Introduction Students entering medical school today will encounter an ageing population and a higher incidence of diseases affecting the elderly—for example, chronic respiratory and cardiac disease and malignancy. Purpose This study was carried out to determine the attitudes of preclinical medical students towards the care of patients for whom a cure is not possible. Methods All students were invited to complete a 23 item questionnaire prior to initial teaching and again following the second teaching session in palliative care. Results Overall, 149 of the 186 students (80%) completed the pre-teaching questionnaire (59 males and 90 females; median age 20 years, range 19–27 years), and 66 students (35%) completed the post-teaching questionnaire. Attitudes towards chronically ill and dying patients were generally positive. It was found that increasing age was associated with a more positive view of caring for patients with chronic or terminal illness, a more positive view of listening to patients reminisce, and a more positive view of patients dying at home (p = 0.014). The only notable result was that after palliative care teaching students had a significantly more positive view of hospices. Conclusion Caring for patients at the end of life can be one of the most rewarding aspects of being a doctor. This study suggests that the majority of medical students have a positive attitude towards patients with chronic incurable illness, and the trend for encouraging older students to enter medicine may be an influencing factor.

Psychiatric disorders are more prevalent in patients with cancer than in the general population.1,2 About 30% of such patients will be experiencing an 'adjustment reaction' and 20% will qualify for a formal psychiatric diagnosis, most commonly depression.3 For a quarter of all patients admitted to a palliative care unit, depression will be a significant symptom.4 Even in the general population the prevalence of depression is 6-10%, and those with a preexisting psychiatric disorder will be at special risk.5 More than 40 years have passed since Hinton drew attention to the issue of mental distress in the dying6 yet surveys still point to much unrecognized suffering;7 as much as 80% of the psychological and psychiatric morbidity of patients with cancer goes unrecognized and untreated. One reason is that many patients choose not to disclose their symptoms—perhaps because they feel it is a waste of the professional's time or because they think they are in some way blameworthy.8 But another factor may be that medical and nursing staff lack confidence in diagnosing depression in these circumstances.9 In this article I review the methods that can help in detection of depression and the options for intervention when it is identified.

Depression is the most common psychiatric illness in patients with terminal cancer. Depression not only lowers the quality of life for the patients and their families, but patients who are depressed may also have physical symptoms that are difficult to palliate and that improve as their depression is appropriately treated. However, up to 80% of the psychological and psychiatric morbidity that develops in cancer patients goes unrecognized and untreated and patients are often reluctant to spontaneously discuss symptoms with medical and nursing staff. In the UK, palliative care clinical nurse specialists have a key role in the assessment of symptoms and advising on management in patients with advanced metastatic cancer. A qualitative study was carried out to determine how specialist palliative care nurses, working both in the community and within a hospital, perceive, assess and manage depression in their patients. Seventeen nurses were interviewed. Nurses found it difficult to discuss depression with their patients and tended to focus on physical symptoms. The lack of training in identifying psychological and psychiatric symptoms was a source of concern to nurses as was the difficulties they encountered in trying to persuade medical staff that patients required further assessment or antidepressant medication. Nurses also felt that psychiatric expertise was not utilized as fully as it could be. The findings of this study have implications for the training and support of nurse specialists in the psychological and psychiatric assessment and management of palliative care patients.

Depression is a frequent symptom in palliative care patients but is often not diagnosed. In the U.K., the majority of patients with advanced cancer are referred to a clinical nurse specialist (CNS) whose remit includes the assessment of psychological symptoms and depression. Clinical nurse specialists have a key role in the diagnosis and management of patients with depression and it is important that they have the skills to do so. A postal questionnaire of all U.K. hospital, hospice, and community palliative care clinical nurse specialist teams was carried out to determine how they assessed depression in their patients. The response rate was 40%. Seventy-nine percent of all clinical nurse specialists believed their skills were poor in this area, and 92% felt they required further training. These beliefs were substantiated by the difficulties nurses encountered in assessing depression and by their beliefs regarding antidepressant medication. Clinical nurse specialists have a pivotal role in improving the detection and management of depression in palliative care patients, and require further training in this area.

Background There is a lack of research into suffering and what it means to the individual patient with advanced cancer and its importance in end of life care. Aims To explore the concept of suffering and distress by eliciting what individual patients with advanced cancer perceived as suffering and how they utilised their own resources to manage suffering. Method A qualitative study design of focused narrative interviews analysed by thematic analysis was conducted with a heterogeneous sample of 49 palliative day care patients. Results For those patients who perceived they were suffering, this study revealed a wide spectrum of definitions which could be described within the following areas; the unavoidable and avoidable suffering, physical and emotional suffering, suffering as loss and finally transformation through suffering. Conclusions These findings provide important insight that broadens and enriches our understanding into the concept of suffering and how patients utilise their resources, which may have important implications for end of life care.

People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care.The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life.Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.

It is estimated that for a quarter of all patients with advanced metastatic cancer, depression will be significant symptom. However up to 80% of the psychological and psychiatric morbidity which develops in cancer patients goes unrecognised and untreated. One of the main difficulties in establishing a diagnosis of an illness where there are no biological markers, physical signs, or diagnostics tests is deciding what can be called "appropriate sadness" as patients approach the end of life and what is a depressive illness. Criteria for diagnosing depression are discussed together with reasons why established screening tools used in other populations may not be appropriate to screen for depression in terminally ill patients. The use of antidepressants and the role of cognitive therapies are also discussed. For effective treatment of a depressive illness, treatment with antidepressant medication needs to be initiated sooner rather than later and patients may need close supervision to ensure compliance. The awareness of depression, the identification of symptoms, and the initiation of treatment is essential if patients are to be offered optimum palliation of psychological as well as physical symptoms.

Objectives A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care. Design Qualitative in-depth interviews with bereaved informal carers of people with dementia. Setting United Kingdom. Participants Forty bereaved carers – 31 women and nine men – with an age range of 18–86 years and from wide socioeconomic backgrounds participated. Main outcome measures Experiences of carers of care for person with dementia during last year of life. Results The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices. Conclusion The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settings – examples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care.

Objective: Literature reviews suggest limited evidence of efficacy of antidepressant medication in patients with advanced cancer. This study was carried out to observe the longitudinal effect of antidepressant medication in a cohort of advanced cancer patients. Method: Patients were recruited from hospice day care settings and followed up longitudinally by series of measures for depression for 6 months or until death. Results: Six hundred and twenty nine patients recruited. One hundred and fifty six patients in total (25%) were receiving antidepressant medication for a median of 9.5 weeks (range 0–36 weeks) and a mean of 12.2 weeks. There was no significant difference in scores on depression measures over time for patients receiving antidepressant medication. Conclusions: Antidepressant medication for advanced cancer patients appeared to have little impact on depression scores. We postulate the holistic approaches within hospice day care may in themselves be interventions for depression thereby masking effect of pharmacological treatment. Further research should explore multi-intervention models for management of depression in advanced cancer.

Much work has been carried out to evaluate the physical sequelae of cancer, but relatively little research has been carried out into the psychological and psychiatric sequelae. Depression is a significant symptom for many palliative care patients but is under recognised and frequently not treated (1–3). Depression is characterised by persistent low mood (dysphoria) and loss of interest in activities (anhedonia). The clinical diagnosis of depression is made according to criteria, e.g. DSM-IV criteria. Depression is an illness with no distinct biological markers or effective diagnostic test. The physician must rely upon skill and knowledge in differentiating depression from ‘appropriate sadness’ or grief reactions as the end of life approaches (4). Low mood can be seen as a continuous variable in cancer patients. Physicians need to seek symptoms actively and not expect the patient to report them spontaneously. Non-disclosure by the patient may occur for a number of reasons. The cancer patient may already feel stigmatised and the physician may believe that the added label of depression may enhance stigmatisation and, therefore, mental suffering; however, most patients are accepting of treatment (5). Physicians may attribute somatic symptoms of depression to the cancer illness, highlighting their tendency to separate mental from physical health as described by Tucker (6). Block (7) suggested hopelessness, helplessness, worthlessness, guilt and suicidal ideation as better indicators of depression. The diagnosis of depression relies on clinical judgement. However, poor detection remains a significant problem; Maguire (8) stated that up to 80% of developed psychological morbidity remains unrecognised and untreated. A study in 2004 by Lawrie et al. (9) found that whilst 73% of palliative care physicians routinely assessed for depression, 61% reported difficulties with assessment and management of depression and wanted more training in this area. The treatment of depression can improve quality of life and also the palliation of other symptoms. All patients identified as depressed require psychosocial support. There is considerable interest in the role of counselling for depression. Many patients find the opportunity to talk about their concerns and fears to be helpful and may find this opportunity from their clinical nurse specialist, doctor, paramedical staff and clergy. A recent study suggested that although counselling can be considered appropriate treatment in some cases (10), antidepressants have a faster onset of action and more appropriate for patients with a short life expectancy, i.e. patients with advanced cancer.

It is estimated that approximately 25 percent of palliative care patients have symptoms of depression, but much of this depression is not identified and therefore not treated. Reasons for non-identification include the difficulties of distinguishing between what can be called “appropriate sadness” and depression at the end of life and also the nondisclosure by patients of their own mood. In an effort to improve the early detection of depression, patients of all age groups referred to a clinical nurse specialist team within a six-month period were invited to complete the Edinburgh Postnatal Depression Scale (EPDS); the scale was found in an earlier study to have a sensitivity and specificity of above 80 percent at a cutoff threshold of 13 or above. The present study found that 34 percent of patients scored at or above the previously validated threshold of 13, and that younger patients (under age 50) were twice as likely to score above the threshold than were older patients (over age 70). The scale was easy to complete by patients, and staff found it useful as part of their initial assessment of patients. It is suggested that such a tool may aid the early detection and treatment of depression in palliative care patients.

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.

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.

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 …