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Background: Effects on anticancer therapy following the integration of palliative care and oncology are rarely investigated. Thus, its potential effect is unknown., Aim: To investigate the effects of the complex intervention PALLiON versus usual care on end-of-life anticancer therapy., Design: Cluster-randomised controlled trial (RCT), registered at ClinicalTrials.gov (No. NCT03088202). The complex intervention consisted of a physician education program enhancing theoretical, clinical and communication skills, a patient-centred care pathway and patient symptom reporting prior to all consultations. Primary outcome was overall use, start and cessation of anticancer therapy in the last 3 months before death. Secondary outcomes were patient-reported outcomes. Mixed effects logistic regression models and Cox proportional hazard were used., Setting: A total of 12 Norwegian hospitals (03/2017-02/2021)., Participants: Patients ⩾18 years, advanced stage solid tumour, starting last line of anticancer therapy, estimated life expectancy ⩽12 months., Results: A total of 616 (93%) patients were included (intervention: 309/control:307); 63% males, median age 69, 77% had gastrointestinal cancers. Median survival time from inclusion was 8 (IQR 3-14) and 7 months (IQR 3-12), and days between anticancer therapy start and death were 204 (90-378) and 168 (69-351) (intervention/control). Overall, 78 patients (13%) received anticancer therapy in the last month (intervention: 33 [11%]/control: 45 [15%]). No differences were found in patient-reported outcomes., Conclusion: We found no significant differences in the probability of receiving end-of-life anticancer therapy. The intervention did not have the desired effect. It was probably too general and too focussed on communication skills to exert a substantial influence on conventional clinical practice., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Pain is a prevalent symptom in patients with advanced cancer. Recognition of prognostic factors associated with pain intensity, could help provide better assessment, leading to better pain management., Aim: identifying prognostic factors which could guide improvements on cancer pain classification., Design: a prospective observational study on chronic cancer pain, exploring the association between average mean pain intensity during a 28 days study follow-up and patients' clinical and pain-related characteristics, including pain syndromes. To evaluate these associations, a mixed model was built., Setting/participants: Patients attending a Palliative Care and Pain Outpatient Clinic from May 2015 to June 2019 were screened. Patients with moderate to severe cancer pain who were already receiving or needed treatment with third step WHO ladder opioids were enrolled in the study. Data from 342 patients with at least one follow-up visit were analyzed., Results: Pain intensity decreased significantly for all patients during time ( p  < 0.001). Age, sex, emotional distress, pain duration and neuropathic pain presence evaluated by the Douleur Neuropathique 4 Questions (DN4) questionnaire were not significantly associated to pain intensity. Breakthrough/episodic pain was associated with higher pain intensity during follow-up ( p  < 0.001). The diagnosis of pain syndrome was overall significantly associated with mean pain intensity during follow-up ( p  = 0.016). Particularly, the concurrent presence of visceral and soft ( p  = 0.026) or soft and nervous tissue pain ( p  = 0.043) were significantly related to worse outcome, whereas pain due to only soft tissue damage with better outcome ( p  = 0.032)., Conclusions: The recognition of specific pain syndromes may help to better classify cancer pain.

Background: Caring for advanced cancer patients affects carers' psychological and physical health. Resilience has been defined as "the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.", Aim: The aim of this study was to explore factors promoting carer resilience, based on carers' experiences with and preferences for health care provider support., Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation., Setting/participants: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included., Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers-a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer-patient relation., Conclusion: Health care providers may enhance carers' resilience by a series of simple interventions. Education should address carers' support needs and resilience. Systematic assessment of carers' support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

Background: Information on medication use in the last months of life is limited., Aim: To describe which medications are prescribed and deprescribed in advanced cancer patients receiving palliative care in relation to time before death and to explore associations with demographic variables., Design: Prospective study, using case report forms for monthly data collection. Medication included cancer treatment and 19 therapeutic groups, grouped into four categories for: (1) cancer therapy, (2) specific cancer-related symptom relief, (3) other symptom relief and (4) long-term prevention. Data were analysed retrospectively using death as the index date. We compared medication use at 5, 4, 3, 2 and 1 month(s) before death by constructing five cross-sectional subsamples with medication use during that month. Paired analyses were done on a subsample of patients with at least two assessments before death., Setting/participants: We studied the medication use of 720 patients (mean age 67, 56% male) in 30 cancer centres representing 12 countries., Results: From 5 to 1 month(s) before death, cancer therapy decreased (55%-24%), most medications for symptom relief increased, for example, opioids (62%-81%) and sedatives (35%-46%), but medication for long-term prevention decreased (38%-27%). The prevalence of chemotherapy was 15.5% in the last month of life, with 9% of new courses started in the last 2 months. With higher age, chemotherapy and opioid use decreased., Conclusion: Medications for symptom relief increased in almost all medication groups. Deprescribing was found in heart medication/anti-hypertensives and cancer therapy, although use of the latter remained relatively high.

With the groundbreaking work of three Milan professors-Bonadonna, Veronesi, and Ventafridda-in the 1980s as the starting point, this article aims to shed light on the potential benefits of a closer and more formal integration between oncology and palliative care. More specifically, we address why integration is needed, how to do it, and the potential benefits to the patients, families, and society. The costs for cancer care are increasing rapidly. Especially during the last year of life, some treatments are futile and expensive without proven benefit for patients in terms of prolonged survival with adequate quality of life (QoL). The latest WHO definition of palliative care supports an upstream introduction of palliative care. More recent studies indicate that such an early integration has the potential to improve the patients' QoL and reduce their symptom burden. Successful integration presupposes formal structures and explicit obligations on how and when to integrate. The Norwegian model for palliative care is presented. It covers the range of oncologic and palliative services from community health care via the local hospital to the tertiary hospital and rests on standardized care pathway as the key instrument to promote integration. Our present state of knowledge indicates that integration does not shorten life; perhaps even the opposite. Futile oncological treatment can be reduced and the QoL of patients and carers improved. We need more evidence on the potential effect upon costs, but present data indicate that integration does not increase them.

Background: Depressive symptoms are prevalent in patients with advanced cancer, sometimes of a severity that fulfil the criteria for a major depressive episode., Aim: The aim of this study was to investigate how the item on depression in the Edmonton Symptom Assessment System with a 0-10 Numerical Rating Scale performed as a screener for major depressive episode. A possible improved performance by adding the Edmonton Symptom Assessment System-Anxiety item was also examined., Design: An international cross-sectional study including patients with incurable cancer was conducted. The Edmonton Symptom Assessment System score was compared against major depressive episode as assessed by the Patient Health Questionnaire-9. Screening performance was examined by sensitivity, specificity and the kappa coefficient., Setting: Patients with incurable cancer (n = 969), median age 63 years and from eight nationalities provided report. Median Karnofsky Performance Status was 70. Median survival was 229 days (205-255 days)., Results: Patient Health Questionnaire-9 major depressive episode was present in 133 of 969 patients (13.7%). Edmonton Symptom Assessment System-Depression screening ability for Patient Health Questionnaire-9 major depressive episode was limited. Area under the receiver operating characteristic curve was 0.71 (0.66-0.76). Valid detection or exclusion of Patient Health Questionnaire-9 major depressive episode could not be concluded at any Edmonton Symptom Assessment System-Depression cut-off; by the cut-off Numerical Rating Scale ⩾ 2, sensitivity was 0.69 and specificity was 0.60. By the cut-off Numerical Rating Scale ⩾ 4, sensitivity was 0.51 and specificity was 0.82. Combined mean ratings by Edmonton Symptom Assessment System-Depression and Edmonton Symptom Assessment System-Anxiety revealed similar limited screening ability., Conclusion: The depression and anxiety items of the Edmonton Symptom Assessment System, a frequently used assessment tool in palliative care settings, seem to measure a construct other than major depressive episode as assessed by the Patient Health Questionnaire-9 instrument., (© The Author(s) 2016.)

Background: One of the barriers identified in palliative care research is the lack of common criteria to describe the population., Aim: The aim of this Delphi process was to obtain consensus on a basic set of core variables to describe or classify a palliative care cancer population., Design and Setting: This was a five-step international Delphi exercise. A total of 117 experts were invited to participate. Based on a literature review and analyses of existing minimum datasets for national databases, a list of 18 proposed variables was presented in the first Delphi round. The two first rounds focused on which variables to include, and several new variables were proposed. The three last Delphi rounds focused on how the agreed variables should be recorded. Consensus was defined as at least 70% agreement., Results: A total of 64 experts from 30 countries participated. High consensus was reached on 31 variables, divided between a 'patient form' - date of birth, gender, living situation, education, ethnicity and 12 symptoms - and a 'health-care personnel form' - patient's date of birth, principal diagnosis, date of the principal diagnosis, stage of the cancer disease, site of metastases, present anticancer treatment, main additional diagnoses, stage of the additional diagnoses, medication, weight loss, performance status, cognitive impairment, place of care and provision of care. It was more difficult to agree upon how to record the variables, but consensus was reached on all except ethnicity, vomiting and weight loss., Conclusion: Consensus was reached on a set of core variables and how they should be recorded.

Background: Neuropathic pain causes greater pain intensity and worse quality of life than nociceptive pain. There are no published data that confirm this in the cancer population., Aim: We hypothesised that patients with neuropathic cancer pain had more intense pain, experienced greater suffering and were treated with more analgesics than those with nociceptive cancer pain, and a neuropathic pain screening tool, painDETECT, would perform as well in those with cancer pain as is reported in those with non-cancer pain., Design: The data were obtained from an international cross-sectional observational study., Setting/participants: A total of 1051 patients from inpatients and outpatients, with incurable cancer completed a computerised assessment on symptoms, function and quality of life. In all, 17 centres within eight countries participated. Medical data were recorded by physicians. Pain type was a clinical diagnosis recorded on the Edmonton Classification System for Cancer Pain., Results: Of the patients, 670 had pain: 534 with nociceptive pain, 113 with neuropathic pain and 23 were unclassified. Patients with neuropathic cancer pain were significantly more likely to be receiving oncological treatment, strong opioids and adjuvant analgesia and have a reduced performance status. They reported worse physical, cognitive and social function. Sensitivity and specificity of painDETECT for identifying neuropathic cancer pain was less accurate than when used in non-cancer populations., Conclusions: Neuropathic cancer pain is associated with a negative impact on daily living and greater analgesic requirements than nociceptive cancer pain. Validated assessment methods are needed to enable early identification of neuropathic cancer pain, leading to more appropriate treatment and reduced burden on patients.

Background: The European Palliative Care Research Collaboration is developing clinical guidelines on cachexia in patients with advanced cancer. A systematic review on the use of fish oil/omega-3-fatty acids (n-3-FA)/eicosapentaenoic acids (EPA) in advanced cancer patients suffering from cancer cachexia was performed as part of the guideline development., Methods: The systematic literature search in Medline on the use of fish oil/n-3-FA/EPA identified 244 papers, with 38 publications included in the final evaluation. Some smaller trials, often unrandomized and without a control group, reported a good effect of n-3-FA in patients with advanced cancer and cachexia. However, the results of the larger randomized controlled trials could not support the positive results, as they mostly did not find a significant effect., Results: Adverse effects such as abdominal discomfort, fish belching, fish aftertaste, nausea and diarrhoea were reported with a low incidence. No serious adverse effects were documented, but adverse effects often had an impact on quality of life. This often limited dose escalations or even led to discontinuation of n-3-FA., Conclusion: There is not enough evidence to support a net benefit of n-3-FA in cachexia in advanced cancer. On the other hand, adverse effects were infrequent, with no severe adverse effects. The results from the review led to a weak negative GRADE recommendation.

The European Palliative Care Research Collaboration is updating the EAPC recommendations on opioids in cancer pain management. A systematic literature search on Medline on the use of alternative routes for opioid application identified 242 papers, with 72 publications included in the final evaluation. Two or more alternative routes of opioid application were compared in 18 papers with a total of 674 patients. The best evidence base was available for the subcutaneous route. A comparison of subcutaneous and intravenous routes found no differences, confirming both routes as feasible, effective and safe. Efficacy and safety of the rectal route was comparable to the parenteral route. The side effect profile seemed to be very similar for the subcutaneous, intravenous, rectal or transdermal routes. Local side effects were reported for rectal application as well as for subcutaneous and transdermal administration. In conclusion, the systematic review found good evidence that subcutaneous administration of morphine or other opioids is an effective alternative for cancer patients if oral treatment is not possible. However, for a number of patients intravenous, rectal or transdermal therapy will offer a good alternative to the subcutaneous route. The review found no significant differences in efficacy or side effects between the alternative application routes.

The European Association for Palliative Care recommendation for starting morphine for cancer pain is dose titration with immediate release (IR) oral morphine given every 4 h with additionally doses for breakthrough pain. As part of a EU 6th framework programme to revise the guidelines we review the evidence regarding starting treatment and dose titration of opioids in adult patients with moderate to severe cancer pain. Relevant papers were identified though a systematic search in Medline for papers published until the end of 2009. We identified 15 relevant papers. Thirteen papers were descriptive papers reporting the results from starting treatment with oral morphine (six studies), starting treatment with intravenous morphine (two studies) and starting treatment with transdermal fentanyl (four studies). All treatment strategies resulted in acceptable pain control and were well tolerated. Two randomized controlled trials were identified. One study compared starting opioid treatment with intravenous morphine versus IR oral morphine and one study compared IR oral morphine versus sustained release oral morphine.

Background: A systematic review, undertaken according to an initiative to revise European Association for Palliative Care guidelines on the use of opioids for cancer pain, which aimed to analyse analgesic efficacy and side effects of spinal opioids in adult cancer patients previously treated with systemic opioids., Methods: Search strategy elaborated with MeSH terms and words related to cancer, palliative care, pain, spinal route and opioids. PubMed, Embase and Cochrane assessed in Nov 2009. Studies were analysed and classified according to quality of evidence and strength of recommendation., Results: Out of 2939 abstracts, 44 articles were selected (nine randomized controlled trials (RCTs), two non-randomized cohort studies, 28 uncontrolled prospective studies, and five case series). Relief of pain and/or side effects were reported in 42 articles; however, there were few studies of high quality design (RCTs) and these studies had methodological limitations that reduced their quality of evidence to very low., Conclusion: There are few RCTs and these are of very low quality. As a result, they provide weak recommendation for using spinal opioids in adult cancer patients. Further studies are clearly needed.

According to a Cochrane review on opioid switching, sound evidence on the practice of substituting one strong opioid with another to improve pain control and reduce adverse effects was lacking in 2004. A systematic search strategy was developed to include studies after 2004, with adult cancer patients switching between strong opioids and reporting estimates of effect on pain and adverse effects. The search retrieved 288 publications (71 duplicates); 187 abstracts and 19 full papers were excluded. Eleven papers met the inclusion criteria; none were randomized controlled trials/meta-analyses. Studies comprised 280 patients (group size 10-32). A variety of opioids and switching strategies were studied. Pain intensity was significantly reduced in the majority of studies. Serious adverse effects were improved. Due to serious design limitations, the level of evidence was low (D). Randomized trials, with standardization of cohort classification, use of outcomes and analysis are warranted to establish the practice of opioid switching.

The objectives were to review the existing literature on management of opioid-induced nausea and vomiting in cancer patients and summarize the findings into evidence-based recommendations. Systematic searches of MEDLINE, EMBASE and the Cochrane Central Register of Controlled Trials were performed, using free text and MeSH/EMTREE search terms. The searches were limited to articles published in English from each database set-up date to 31 July 2009. Reference lists and relevant international conference proceedings were hand-searched. Fifty-five studies were identified, providing data on 5741 patients. The studies were classified into: (A) studies in which treatment of nausea/vomiting was the primary outcome (a total of 18 studies, of which eight studies specifically addressed opioid-induced emesis); and (B) studies in which nausea/vomiting were secondary or tertiary outcomes (37 studies). The existing evidence had several limitations, there was a lack of consistency and the overall quality was grade D. By applying the principles of the Grading of Recommendations Assessment, Development and Evaluations (GRADE) system, three weak recommendations were formulated. The current evidence is too limited to give evidence-based recommendations for the use of antiemetics for opioid-induced nausea or vomiting in cancer patients. The evidence suggests that nausea and vomiting in cancer patients receiving an opioid might be reduced by changing the opioid or opioid administration route. The evidence was also too limited to prioritize between symptomatic treatment and adjustment of the opioid treatment.

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.

The aims of this study were to describe the pain and use of pain medication in nursing home patients and examine which variables that were associated with pain. Inpatients (n = 307) older than 64 years from nursing homes were included. Pain was measured with a 4-point verbal rating scale in the self-reported group (SRG) and Doloplus-2 in the proxy-rated group (PRG). The mean age was 86 years (SD, 7), and more than two-thirds were female. A total of 128 (60%) patients were able to self-report their pain. Approximately 50% of the SRG reported 'pain now', and of these, nearly 50% reported moderate or severe pain intensity. Better cognitive function was associated with higher pain and receiving more potent pain medication in the SRG. The pain prevalence in the PRG was higher than in the SRG (67.5% vs 51%), but no variable was associated with proxy-rated pain. Nearly 30% in the SRG and 40% in the PRG did not receive pain medication in spite of pain. Pain is still a huge problem in the nursing homes, and more research is needed on pain management in nursing home residents.

At present, there is no universally accepted cancer pain assessment tool for use in palliative care (PC). The European Palliative Care Research Collaborative (EPCRC), therefore, aims to develop an international consensus-based computerised pain assessment tool. As part of this process, we have performed (1) a literature review on pain assessment tools for use in the PC and (2) an international expert survey to gain information on the relevant dimensions for pain assessment in PC. 230 publications were identified, only six met the inclusion criteria. Three further articles were identified through manual searching, totalling 11 different pain assessment tools. Nine tools were multidimensional. Pain intensity was assessed in seven, using various numerical/verbal rating scales (NRS/VRS); five tools focused on pain management. Three publications did not identify the rationale for the need to develop a new tool, and the selection procedure for items/dimensions was not described in six tools. Patient and/or professional expert groups were involved in the development of five tools and only two tools were extensively validated or cross-culturally tested. Thirty-two experts (71%) completed the expert survey and identified 'intensity', 'temporal pattern', 'relief/exacerbation', 'pain quality' and 'location' as the five most relevant dimensions. Most preferred assessment of 'pain intensity' was by NRS rather than VRS. Time windows extending 24 h were regarded as less relevant. Development of PC pain assessment tools seems to be a continuous process, which does not adhere to systematic guidelines, thus does not contribute to a universally accepted tool. No tool contained all relevant dimensions as defined by the experts. Many tools focused on particular dimensions, suggesting that specific research interests may drive the tool development process. Extensive literature reviews, expert and patient input and clinical studies are a needed approach in the development of a new consensus-based pain assessment tool.

Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue. This paper presents the position of an expert working group of the European Association for Palliative Care (EAPC), evaluating the available evidence on diagnosis and treatment of fatigue in palliative care patients and providing the basis for future discussions. As the expert group feels that culture and language influence the approach to fatigue in different European countries, a focus was on cultural issues in the assessment and treatment of fatigue in palliative care. As a working definition, fatigue was defined as a subjective feeling of tiredness, weakness or lack of energy. Qualitative differences between fatigue in cancer patients and in healthy controls have been proposed, but these differences seem to be only an expression of the overwhelming intensity of cancer-related fatigue. The pathophysiology of fatigue in palliative care patients is not fully understood. For a systematic approach, primary fatigue, most probably related to high load of proinflammatory cytokines and secondary fatigue from concurrent syndromes and comorbidities may be differentiated. Fatigue is generally recognized as a multidimensional construct, with a physical and cognitive dimension acknowledged by all authors. As fatigue is an inherent word only in the English and French language, but not in other European languages, screening for fatigue should include questions on weakness as a paraphrase for the physical dimension and on tiredness as a paraphrase for the cognitive dimension. Treatment of fatigue should include causal interventions for secondary fatigue and symptomatic treatment with pharmacological and nonpharmacological interventions. Strong evidence has been accumulated that aerobic exercise will reduce fatigue levels in cancer survivors and patients receiving cancer treatment. In the final stage of life, fatigue may provide protection and shielding from suffering for the patient and thus treatment may be detrimental. Identification of the time point, where treatment of fatigue is no longer indicated is important to alleviate distress at the end of life.

Background: Physical decline is experienced by all palliative care patients and affects most aspects of life. Physical functioning (PF) is therefore a crucial domain for quality of life (Qol) assessments. The purpose of this study was to review how PF assessments are performed in Qol instruments developed for palliative care, Methods: For identification of instruments, Medline searches up to April 2005 were performed using the terms (palliative care OR end of life care OR terminal care) AND quality of life AND (assessment OR instrument OR questionnaire). A total of 1326 hits were screened. Named QoL instruments were extracted from 240 abstracts and 46 relevant reports. Items assessing PF were then identified and classified according to activity domains as described by the WHO International Classification of Functioning Disability and Health., Results: Of 224 different instruments detected, 39 were identified as developed for palliative care. Of these, 11 included original PF assessments. Two were comprehensive performance status measures made for staff assessment, 9 were multidimensional tools including 2-7 PF items. The content and phrasing of items varied considerably. All instruments included some aspects of self-care, whereas the coverage of mobility, domestic, work--and leisure activities was inconsistent., Interpretation: Despite its importance, PF assessment seems to be a minor part of palliative care QoL instruments. Clear definitions and conceptualization of PF are needed, as well as a consensus on relevant aspects to include in improved instruments. Performance scales already developed should be further explored with regard to content, validity and psychometric properties.

Patients in palliative care are elderly, frail and in decline with multisystem disease. These and other factors make palliative care research particularly challenging, and has been one of several reasons why relatively little systematic research has been performed. The European Association for Palliative Care (EAPC) is seeking to emphasise the importance of research. The present project is the first empirical multicentre study organised by the EAPC Research Network, with the aim of identifying the patient population using specialised palliative care, and identifying a network of palliative care services across Europe, able to participate in a multicentre collaboration for research. During a designated week in the autumn of 2000, data on patients were recorded from 143 centres. The survey was carried out by means of two questionnaires, one centre questionnaire and one patient questionnaire. Data were submitted on 3013 patients from 22 different European countries. Almost all patients had cancer (94%), while some had neurological disease (3%). The majority (75%) had been referred to a palliative care service during the six to seven months before the survey was performed. Very few patients had less than one week of expected survival (6%), the majority were expected to live one to six months, while as many as 16% were expected to live more than one year. The majority of the patients (27%) were fully ambulatory--the ability to walk independently without any assistance. The majority of the patients (60%) received care as an outpatient, either at a traditional clinic in an outpatient cancer hospital (12%), in home-care programs from a specialised advisory service (24%), or external nursing care (24%). The population of patients included in this survey was not a sample of dying patients. There were a substantial number of patients with an anticipated life expectancy of more than six months. The study demonstrated a considerable enthusiasm for research in the palliative care community across Europe. The heterogeneity of the sample is evident, and this will need careful consideration for future clinical trials. This calls for an international consensus on how to report on patient characteristics within palliative care research. This is necessary in order to be able to evaluate the representativity of the study population, as well as to compare data between studies. The range of services encountered in the survey highlights the need for the organisational and clinical standards for palliative care, which can be audited.

Purpose: Pain severely impairs health-related quality of life and is a feared symptom among cancer patients. Unfortunately, patients often do not receive optimal care. We wanted to evaluate the quality of cancer pain treatment in Norwegian hospitals., Patients and Methods: A one-day prevalence study targeting hospitalised cancer patients above 18 years of age was performed. A questionnaire based on the Brief Pain Inventory was used, and additional information regarding sex, age, diagnosis, break through pain (BTP), and treatment was included., Results: Fifty two percent of the included patients stated having cancer related pain (n=453), and mean pain during the previous 24 hours for these patients was NRS 3.99 (Numeric Rating scale 1-10). Presence of metastasis, occurrence of BTP, and abnormal skin sensibility in the area of pain were associated with higher pain scores. Forty two percent of all patients used opioids. However, these patients still had higher pain scores, more episodes of BTP, and more influence of the pain on daily life functions than average. Thirty percent of patients with severe pain (NRS>or=5) did not use opioids, and some of these patients did not receive any analgesics at all., Conclusion: Although most cancer patients receive an acceptable pain treatment in Norwegian hospitals, there are patients who are not adequately managed. Lack of basic knowledge and individual systematic symptom assessment may be reasons for the underuse of analgesics and the resulting unnecessary suffering among the cancer patients.

The heterogeneity of the palliative care population represents challenges to research methodology, including study design, informed consent (and ethical issues in general), assessment and classification of symptoms and signs, as well as practical issues in the clinic. The aim of this report is to describe and examine the status of palliative care research in Europe by means of a survey and a literature review. Only one European country, the UK, has taken a national initiative to stimulate and promote palliative care research through the supportive and palliative care collaboratives (SUPAC) in 2005. There are few European research groups in palliative care reaching a critical size, several countries do not have academic chairs in palliative care, and there is no clear trend that chairs are emerging in general. There is little public funding for palliative care research. Palliative care researchers need to compete on the 'open market' or rely on private foundations. There has been a steady increase in the number of abstracts for presentation at the EAPC Research Forums, from 200 in 2000, to 480 in 2006. The literature review indicated that the majority of publications are surveys and descriptive/observational studies, and few randomised, controlled, studies were published. In conclusion, the quantity of research seems to be steadily increasing. There may be a need for larger multi-centre studies, and in order to perform such studies, national and international structures, encompassing research above the critical size, with a multi-disciplinary background including both basic scientists and clinicians is required.

Twelve patients with poor pain control or unacceptable side effects during treatment with morphine were switched to methadone and followed for nine months in this open prospective study. Primary outcomes were patient preference for opioid and pain control while physical, cognitive and role functioning were secondary outcomes. The morphine dose was decreased by 1/3 daily and was replaced with an equianalgesic dose of methadone over a three-day period. During switching and a one-week dose titration period, patients were given additional methadone if required. During dose titration one patient experienced sedation requiring naloxone. Four patients were switched back to morphine due to poor pain control, drowsiness or sweating. Seven patients preferred long-term (>nine months) treatment with methadone and reported reduced pain and improved functioning while cognition was not improved. This study brings novel information on the long-term consequences for pain control, health-related quality of life and cognitive functioning with a switch from morphine to methadone in the treatment of chronic non-malignant pain.

The Research Network of the European Association for Palliative Care (EAPC) performed a survey of 3030 cancer patients from 143 palliative care centres in 21 European countries. The survey addressed pain intensity and the use of non-opioid analgesics, adjuvant analgesics and opioids. Patients were treated with analgesics corresponding to the WHO pain ladder step I (n = 855), step II (n = 509) and step III (n = 1589). The investigators assessed 32% of the patients as having moderate or severe pain. In general there were small differences between pain intensities across different countries. Cancer primary sites and the presence of metastasis had only minor influences on pain intensity. The most frequently used non-opioid analgesics were NSAIDs (26%) and paracetamol (23%). Adjuvant analgesics or co-analgesics used by >1% of the patients were corticosteroids (39%), tricylic antidepressants (11%), gabapentin (5%), bisphosphonates (4%), clonazepam (2%), carbamazepine (4%) and phenytoin (2%). The use of non-opioid analgesics and co-analgesics varied widely between countries. Opioids administered for mild to moderate pain were codeine (8%), tramadol (8%), dextropropoxyphene (5%) and dihydrocodeine (2%). Morphine was the most frequently used opioid for moderate to severe pain (oral normal release morphine: 21%; oral sustained-release morphine: 19%; i.v. or s.c. morphine: 10%). Other opioids for moderate to severe pain were transdermal fentanyl (14%), oxycodone (4%), methadone (2%), diamorphine (2%) and hydromorphone (1%). We observed large variations in the use of opioids across countries. Finally, we observed that only a minority of the patients who used morphine needed very high doses.

Background: Most studies on attitudes towards euthanasia and physician-assisted suicide (PAS) have been conducted in healthy populations. The aim of this study is to explore and describe attitudes towards, and wishes for, euthanasia/PAS in cancer patients with short life expectancy., Method: Semi-structured interviews with 18 cancer patients with a life expectancy of less than nine months. All patients were recruited from an inpatient palliative medicine unit., Results: Patients holding a positive attitude towards euthanasia/PAS do not necessarily want euthanasia/PAS for themselves. Wishes are different from requests for euthanasia/PAS. Fear of future pain and a painful death were the main reasons given for a possible wish for euthanasia/PAS. Worries about minimal quality of life and lack of hope also contributed to such thoughts. Wishes for euthanasia/PAS were hypothetical; they were future oriented and with a prerequisite that intense pain, lack of quality of life and/or hope had to be present. Additionally, wishes were fluctuating and ambivalent., Conclusion: The wish to die in these patients does not seem to be constant. Rather, this wish is more appropriately seen as an ambivalent and fluctuating mental 'solution' for the future. Health care providers should be aware of this when responding to utterances regarding euthanasia/PAS.

Background: Pain assessment is challenging in cognitively impaired (CI) patients due to inadequate self-report skills and observational ratings are an alternative. The Doloplus-2 is developed for pain assessment in the CI and rates somatic, psychomotor and psychosocial behaviours as indicators of pain., Aims: To translate the Doloplus-2 into Norwegian, to test the Doloplus-2 with regard to criterion validity and to obtain the administrators' evaluation of the clinical performance of the Doloplus-2., Methods: Nurses at three nursing homes, in collaboration with two research assistants, administered the Doloplus-2 to 59 patients with dementia. The results were compared against experienced clinicians' pain ratings. Regression analyses were performed to explore each different item's contribution to the total pain score. The administrators also completed a debriefing questionnaire., Results: The instrument was translated according to international guidelines. Regression analyses demonstrate that the Doloplus-2 score accounts for 62% (R2) of the expert score and that the four most informative items could explain 68% of the expert score. Analyses of the different Doloplus-2 items indicate that facial expressions explain most and social life least of the expert's pain ratings. The administrators reported that Doloplus-2 was helpful and easy to administer, but questioned the validity of the psychosocial domain., Conclusions: The Norwegian Doloplus-2 demonstrates satisfactory criterion validity and clinical value in this pilot study. However, the content of the instrument needs a general re-evaluation, especially with regard to the psychosocial items.

The purpose of this prospective nonrandomized study was to evaluate time spent at home, place of death and differences in sociodemographic and medical characteristics of patients, with cancer in palliative stage, receiving either hospital-based advanced home care (AHC), including 24-hour service by a multidisciplinary palliative care team or conventional hospital care (CC). Recruitment to the AHC group and to the study was a two-step procedure. The patients were assigned to either hospital-based AHC or CC according to their preferences. Following this, the patients were asked to participate in the study. Patients were eligible for the study if they had malignant disease, were older than 18 years and had a survival expectancy of 2-12 months. A total of 297 patients entered the study and 280 died during the study period of two and a half years, 117 in the AHC group and 163 in the CC group. Significantly more patients died at home in the AHC group (45%) compared with the CC group (10%). Preference for and referral to hospital-based AHC were not related to sociodemographic or medical characteristics. However, death at home was associated with living together with someone. Advanced hospital-based home care targeting seriously ill cancer patients with a wish to remain at home enable a substantial number of patients to die in the place they desire.

The most commonly encountered clinical conditions presenting with cognitive failure (CF) are delirium, dementia and amnestic disorders. Of these, delirium is probably the most prevalent in palliative care, and it is potentially reversible. Thus, improvement in diagnostics seems warranted. The objectives of this review were to examine the methods for assessment of CF and delirium in palliative care. Twenty-two studies were reviewed: 64% were published in 2000 or later. Twelve reports focused on delirium, six on CF, while the remaining four assessed confusion (2), hallucinations and general psychological morbidity. Median sample size was 100 (20393). Ten different instruments were used: The Mini Mental State Exam was used in 13 studies. Five studies were validation reports of new or existing instruments. The term CF is an imprecise description of a loss in one or more of the cognitive functions. The interchangeable use of CF as a description of specific diagnoses should be avoided, as this contributes to prevalence rates that are not representative. Assessment tools that discriminate between the different diagnostic entities presenting with CF should be used in future studies.

This study compared the health-related quality of life (HRQOL) of family members of patients who participated in a program of palliative care (intervention family members) with those in conventional care (control family members). The HRQOL was measured by the short-form (SF-36) health survey questionnaire, including eight subscales. The longitudinal intervention study includes two sites: Trondheim, Norway and Malmø, Sweden. Our first hypothesis was that the HRQOL of the family members would deteriorate over time in the terminal phase and reach a low point a few months after the death of the patients, and thereafter gradually increase. This hypothesis was fully supported by the trajectories for the five scales, role limitation due to physical problems, vitality, social functioning, role limitation due to emotional problems, and mental health; but only partially so for the remaining three scales, physical functioning, bodily pain, and general health perception. From a second hypothesis, we expected the trajectories of the HRQOL scale scores for the two groups to show an increasing difference over time in quality of life in favor of the intervention group. This was the case for two of the scales: role limitation due to emotional problems and mental health. Before we may reach a definitive conclusion on the effects of palliative care programs for the HRQOL of family members, we need further longitudinal intervention studies with large samples.

Fatigue is a major complaint among advanced cancer patients. Several instruments are available for measuring fatigue. The EORTC QLQ-C30 is one of the most frequently used health-related quality of life (HRQOL) instruments, and it includes a three-item fatigue subscale. Limited knowledge exists about the validity, performance and sensitivity of EORTC QLQ-C30 fatigue scale as compared with a fatigue-specific instrument. The aim of the present study was to validate the EORTC QLQ-C30 fatigue scale (FA) against the Fatigue Questionnaire (FQ). The FQ is frequently used and was developed to measure fatigue in both cancer and noncancer populations. The FQ measures physical (PF, seven items) and mental fatigue (MF, four items). The study population included two different cohorts: A) patients with advanced metastatic cancer included in a prospective randomized study of palliative radiotherapy (n = 238); B) patients with leukaemia and malignant lymphoma curatively treated with stem-cell transplantation and high-dose chemotherapy (n = 128). The analysis demonstrated that the FA correlated higher with the PF scale (r = 0.67-0.75) as compared with the MF scale (r = 0.49-0.61). The item scale correlations between FA items and the PF scale were consistently higher than between FA items and the MF scale. A factor analysis including all the items within the FA and the FQ identified two factors. All FA items loaded on a PF factor (0.70-0.85). A floor/ ceiling effect, indicating a high number of respondents with lowest, respectively, highest scores was observed more frequently in the FA as compared with the FQ. The PF discriminated better between diagnostic groups with different levels of fatigue than the FA did. In conclusion, the EORTC QLQ-C30 fatigue scale is measuring physical fatigue. A floor/ ceiling effect seems to appear for the EORTC QLQ-C30 fatigue scale. The validity of the EORTC QLQ-C30 fatigue scale is to be questioned for use in palliative care patients. In studies with fatigue as a defined end point, a domain-specific instrument should, therefore, be added.

The clinical importance of routine drug monitoring of serum concentrations of morphine, morphine-6-glucuronide (M6G) and morphine-3-glucuronide (M3G) during chronic morphine therapy is not established. We measured morphine, M6G and M3G serum concentrations in cancer pain patients receiving oral (n = 263, median dose 80 mg/24 hours) or subcutaneous (sc) (n = 35, median dose 110 mg/24 hours) morphine. Regression analyses were performed to investigate if serum concentrations of morphine, M3G and M6G predicted pain intensity (Brief Pain Inventory), health-related quality-of-life variables (EORTC QLQ-C30) and cognitive function (Mini-Mental Score). Serum concentrations were also compared in patients categorized as morphine 'treatment successes' and 'treatment failures'. We observed that serum concentrations of morphine, M6G or M3G did not predict pain intensity, cognitive function, nausea or tiredness. 'Treatment failures' caused by nausea, tiredness, cognitive failure or constipation did not have statistically significant different morphine, M6G and M3G serum concentrations than patients classified as 'treatment successes'. In conclusion, this study did not observe any concentration-effect relationships of morphine, M3G or M6G with pain intensity, nausea, constipation, tiredness or cognitive failure in blood samples obtained during routine clinical drug monitoring in cancer patients. This result suggests that therapeutic drug monitoring as a routine tool during chronic morphine treatment has limited value for clinical decision making.

In this study, cancer patients' characteristics associated with death in nursing homes were explored. The study sample included 395 cancer patients who had participated in a trial of palliative care, 260 (66%) patients died in hospital, 80 (20%) at home and 55 (14%) in nursing homes. Health-related quality of life was prospectively recorded using the EORTC QLQ-C30 questionnaire. Death in nursing home was associated with greater age, not living with spouse and poor performance status. Patients dying in nursing homes reported severe functioning impairments and more fatigue and appetite loss compared with those dying elsewhere. The association between death in nursing homes and poor physical, role, cognitive and social functioning remained significant when sociodemographic and medical differences were taken into account. Further research on frail elderly cancer patients is warranted to improve their care, to evaluate the appropriateness of nursing home placement and for future planning of palliative care services.