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Background: Early palliative care together with standard haematological care for advanced patients is needed worldwide. Little is known about its effect. The aim of the review is to synthesise the evidence on the impact of early palliative care on haematologic cancer patients' quality of life and resource use., Patients and Methods: A systematic review was conducted. The search terms were early palliative care or simultaneous or integrated or concurrent care and haematological or oncohaematological patients. The following databases were searched: PubMed, Embase, Cochrane, CINHAL and Scopus. Additional studies were identified through cross-checking the reference articles. Studies were in the English language, with no restriction for years. Two researchers independently reviewed the titles and abstracts, and one author assessed full articles for eligibility., Results: A total of 296 studies titles were reviewed. Eight articles were included in the synthesis of the results, two controlled studies provided data on the comparative efficacy of PC interventions, and six one-arm studies were included. Since data pooling and meta-analysis were not possible, only a narrative synthesis of the study results was performed. The quality of the two included comparative studies was low overall. The quality of the six non-comparative studies was high overall, without the possibility of linking the observed results to the implemented interventions., Conclusions: Studies on early palliative care and patients with haematological cancer are scarce and have not been prospectively designed. More research on the specific population target, type and timing of palliative care intervention and standardisation of collected outcomes is required., Prospero Registration Number: CRD42020141322., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Context: Palliative care is an essential component of the coronavirus disease 2019 (COVID-19) pandemic response but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown., Objectives: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic., Methods: We developed, piloted, and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was electronically mailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted., Results: About 83 participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap, and disinfectant products (43%, 42%, and 59%, respectively) and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional personal protective equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff in other health care settings., Conclusion: Our survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: There is widespread agreement about the importance of communication skills training (CST) for healthcare professionals caring for cancer patients. Communication can be effectively learned and improved through specific CST. Existing CSTs have some limitations with regard to transferring the learning to the workplace. The aim of the study is developing, piloting, and preliminarily assessing a CST programme for hospital physicians caring for advanced cancer patients to improve communication competences., Methods: This is a Phase 0-I study that follows the Medical Research Council framework; this paper describes the following sections: a literature review on CST, the development of the Teach to Talk training programme (TtT), the development of a procedure for assessing the quality of the implementation process and assessing the feasibility of the implementation process, and the pilot programme. The study was performed at a 900-bed public hospital. The programme was implemented by the Specialized Palliative Care Service. The programme was proposed to 19 physicians from 2 departments., Results: The different components of the training course were identified, and a set of quality indicators was developed. The TtT programme was implemented; all the physicians attended the lesson, videos, and role-playing sessions. Only 25% of the physicians participated in the bedside training. It was more challenging to involve Haematology physicians in the programme., Conclusions: The programme was completed as established for one of the two departments in which it was piloted. Thus, in spite of the good feedback from the trainees, a re-piloting of a different training program will be developed, considering in particular the bed side component. The program should be tailored on specific communication attitude and believes, probably different between different specialties.

Background: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously., Objectives: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families., Search Methods: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies., Selection Criteria: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting., Data Collection and Analysis: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available., Main Results: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I 2 = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I 2 = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I 2 = 0%, 2 studies, 337 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I 2 = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I 2 = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision., Authors' Conclusions: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations., (Copyright © 2020 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.)

Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making., Aim: To examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries., Design: Cross-sectional telephone survey, in March 2020., Setting: Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15-25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive., Results: Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response., Conclusion: The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential. Hospices may also need to be proactive in connecting with the acute pandemic response.

Background: Patients with advanced haematological malignancies suffer from a very high symptom burden and psychological, spiritual, social and physical symptoms comparable with patients with metastatic non-haematological malignancy. Referral to palliative care services for these patients remains limited or often confined to the last days of life. We developed a palliative care intervention (PCI) integrated with standard haematological care. The aim of the study was focussed on exploring the feasibility of the intervention by patients, professionals and caregivers and on assessing its preliminary efficacy., Methods/design: This is a mixed-methods phase 2 trial. The Specialist Palliative Care Team (SPCT) will follow each patient on a monthly basis in the outpatient clinic or will provide consultations during any hospital admission. SPCT and haematologists will discuss active patient issues to assure a team approach to the patient's care. This quantitative study is a monocentric parallel-group superiority trial with balanced randomisation comparing the experimental PCI plus haematological standard care versus haematological standard care alone. The primary endpoint will calculate on adherence to the planned PCI, measured as the percentage of patients randomised to the experimental arm who attend all the planned palliative care visits in the 24 weeks after randomisation. The qualitative study follows the methodological indications of concurrent nested design and was aimed at exploring the acceptability of the PCI from the point of view of patients, caregivers and physicians., Discussion: In this trial, we will test the feasibility of an integrated palliative care approach starting when the haematologist decides to propose the last active treatment to the patient, according to his/her clinical judgement. We decided to test this criterion because it is able to intercept a wide range of patients'needs. The feasibility of this approach requires that we enrol at least 60 patients and that more than 50% of them be followed by the palliative care team for at least 24 weeks. The trial will include integrated qualitative data analysis; to give essential information on feasibility and acceptability., Trial Registration: ClinicalTrials.gov: NCT03743480 (November 16, 2018).

Background: Despite the great advances in the concept of palliative care (PC) and its benefits, its application seems to be delayed, leaving unfulfilled the many needs of patients and family members. One way to overcome this difficulty could be to develop a new training programme by palliative care specialists to improve PC primary skills in healthcare professionals. The aim of this study was to evaluate the training's impact on trainees within a hospital setting using Kirkpatrick's and Moore's models., Methods: We adopted a mixed-method evaluation with concurrent triangulation. The evaluation followed the first three steps of Kirkpatrick's and Moore's models and included a pre- and post-training evaluation through self-administered questionnaires and focus groups. We used the McNemar statistical test., Results: The results highlighted the significant amount of knowledge acquired by the hospital professionals after training, in terms of increasing their knowledge of palliative care and in terms of the change in meaning that they attributed to phenomena related to chronicity and incurability, which they encounter daily in their professional practice. In both quantitative and qualitative research, the results, in synthesis, highlight: (i) the development of a new concept of palliative care, centred on the response to the holistic needs of people; (ii) that palliative care can also be extended to non-oncological patients in advanced illness stages (our training was directed to Geriatrics and Nephrology/Dialysis professionals); (iii) the empowerment and the increase in self-esteem that healthcare professionals gained, from learning about the logistical and structural organization of palliative care, to activate and implement PC; (iv) the need to share personal aspects of their professional life (this result emerges only in qualitative research); (v) the appreciation of cooperation and the joining of multiple competences towards a synergistic approach and enhanced outcomes., Conclusion: It is necessary to further develop rigorous research on training evaluation, at the most complex orders of the Kirkpatrick and Moore models, to measure primary PC skills in health care professionals. This will develop the effectiveness of the integration of I- and II-level palliative care competencies in hospitals and improve outcomes of patients' and families' quality of life.

Background: Much effort has been made to explore how patients with advanced chronic illness and their families experience care when they attend the Emergency Department, and many studies have investigated how healthcare professionals perceive Palliative Care provision in the Emergency Department. Various models exist, but nonetheless incorporating palliative care into the Emergency Department remains challenging. Considering both healthcare professionals' and users' perspective on problems encountered in delivering and receiving appropriate palliative care within this context may provide important insight into meaningful targets for improvements in quality of care. Accordingly, this study aims at exploring issues in delivering palliative care in the Emergency Department from the perspective of both providers and users, as part of a larger project on the development and implementation of a quality improvement program in Italian Emergency Departments., Methods: A qualitative study involving focus group interviews with Emergency Department professionals and semi-structured interviews with patients with palliative care needs in the Emergency Department and their relatives was conducted. Both datasets were analyzed using Thematic Analysis., Results: Twenty-one healthcare professionals, 6 patients and 5 relatives participated in this study. Five themes were identified: 1) shared priorities in Emergency Department among healthcare professionals and patients, 2) the information provided by healthcare professionals and that desired by relatives, 3) perception of environment and time, 4) limitations and barriers to the continuity of care, and 5) the contrasting interpretations of giving and receiving palliative care., Conclusions: This study provides insights into targets for changes in Italian Emergency Departments. Room for improvement relates to training for healthcare professionals on palliative care, the development of a shared care pathway for patients with palliative care needs, and the optimization of Emergency Department environment. These targets will be the basis for the development of a quality improvement program in Italian Emergency Departments.

Background: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables., Aim: To pilot test the data set to check acceptability, comprehensibility and feasibility., Design: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods., Setting/participants: Adult cancer patients and staff in palliative care units, hospices and home care., Results: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items., Conclusion: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.

Background: Outcome measurement is fundamental to assess needs and priority of care in palliative care settings. The Integrated Palliative care Outcome Scale (IPOS) was developed from earlier versions of this tool. Its use is encouraged to ameliorate the assessment of individual outcomes in palliative care settings. This study aimed to translate and culturally adapt IPOS into Italian, and explore its face and content validity., Methods: After forward-backward translation, a qualitative study explored the views of and cognitive processes used by respondents. We conducted individual semi structured interviews with 21 patients admitted to two palliative care services, from hospitals, hospices and the community, and focus groups with 12 professionals working in multidisciplinary palliative care teams and used thematic analysis. The results were integrated in a final audit, including the project team and the original POS developers, to refine the final format of the tool., Results: We conducted 21 face to face cognitive interviews with patients, and 2 focus groups with 14 professionals. Patients and professionals felt content and format of IPOS appropriate and feasible, and not burdensome. Some layout problems were raised leading to adaptation. Main issues regarded: clarifying the meaning of choices and some cultural interpretation of some questions and response options and interpretation of some instructions. We proposed using some new terms as more appropriate and comprehensive in our context, such as replacing the term "family" with "dear ones". The items that appeared unchanged from the previously validated Italian POS were left unmodified to maintain coherence., Conclusions: The Italian IPOS, in its four versions directed to patients or staff and with a recall period of 3 or 7 days, has face and content validity for use in clinical settings and is ready for further psychometric and clinimetric validation., Competing Interests: None of the authors have commercial competing interests. IH developed and validated the original POS and the POS family of measures including IPOS. She has no commercial interest as POS and all related measures are available freely. She was able to provide important contributions in placing this work in the wider context of outcome measurement and in the methods of validation. MC, AV and ER validated the Italian version of POS. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

Background: This article proposes a retrospective analysis of a compassionate use (CU), using a case study of request for Avelumab for a patient suffering from Merkel Cell Carcinoma. The study is the result of a discussion within a Provincial Ethics Committee (EC) following the finding of a high number of requests for CU program. The primary objective of the study is to illustrate the specific ethical and clinical profiles that emerge from the compassionate use program (CUP) issue. The secondary goals are: a) to promote a moral reflection among physicians who require approval for the CUP and b) provide the basis for recommendations on how to request CUP., Main Body: The instruments for carrying out the analysis of the case study and the discussion are as follows: Analysis of the audio-recording of the EC meeting regarding the selected Case study. In-depth discussion of topics that emerged during the meeting by means of administration of 5 semi-structured interviews with 2 doctors involved in the case (proposing physician and palliative physician) and with 3 components of the EC who played a major role in the EC internal discussion., Conclusions: In an exploration of emerging clinical and ethical issues, four primary themes arise: 1. efficacy, safety of the treatment and patient's quality of life; 2. clear, realistic, adequate communication; 3. right to hope; 4. simultaneous Palliative Care approach. The results of ethical analysis carried out concern two areas: 1) ethical profiles relating to the use of CUP; 2) the role of the EC concerning the compassionate use of drugs and the need to provide recommendations on how to request CUP. With the aim of implementing these conclusions, the provincial EC of Reggio Emilia chose to steer the request for drugs for compassionate use through recommendations for good clinical and ethical practice based on the following assumptions: 1) the "simultaneous care" approach must be preferred. Secondly, 2) the EC's assessment must be part of the decision-making process that the care team conducts before proposing compassionate use to the patient.

Background: There is evidence that early integration of palliative care improves quality of life, lowers spending and helps clarify preferences and goals for advanced cancer patients. Little is known about the feasibility and acceptability of early integration., Aim: Assessing feasibility of early integration of palliative care, and exploring concerns perceived and problems encountered by patients, relatives and oncologists., Design: A phase 2 mixed-methods study ( ClinicalTrials.Gov :NCT02078700)., Methods: Oncologists of two outpatient clinics offered a specialised palliative care intervention integrated with standard oncological care to all consecutive newly diagnosed metastatic respiratory/gastrointestinal cancer patients. We interviewed samples of patients, relatives and oncologists to explore strengths and weaknesses of the intervention., Results: The intervention was proposed to 44/54 eligible patients (81.5%), 40 (90.1%) accepted, 38 (95.0%) attended the first palliative care visit. The intervention was completed for 32 patients (80.0%). It did not start for three (7.5%) and was interrupted for three patients who refused (7.5%). The Palliative Care Unit performed 274 visits in 38 patients (median per patient 4.5), and 24 family meetings with relatives of 16 patients. All patients and most relatives referred to the usefulness of the intervention, specifically for symptoms management, information and support to strategies for coping. Oncologists highlighted their difficulties in informing patients on palliative intervention, sharing information and coordinating patient's care with the palliative care team., Conclusion: Early integration of palliative care in oncological setting seems feasible and well accepted by patients, relatives and, to a lesser extent, oncologists. Some difficulties emerged concerning patient information and inter-professional communication.

The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: There is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care., Methods: Phase 1: multicentre, mixed method study comprising cognitive and qualitative interviews with patients and staff, cultural refinement and adaption. Phase 2: consecutive cancer patients on admission to 8 inpatient hospices and 7 home-based teams were asked to complete the POS, the EORTC QLQ-C15-PAL and the FACIT-Sp (T0), to assess internal consistency, convergent and divergent validity. After 6 days (T1) patients and staff completed the POS to assess responsiveness to change (T1-T0), and agreement between self-assessed POS and POS completed by the staff. Finally, we asked hospices an assessment 24-48 h after T1 to assess its reliability (test re-test analysis)., Results: Phase I: 209 completed POS questionnaires and 29 cognitive interviews were assessed, revisions made and one item substituted. Phase II: 295 consecutive patients admitted to 15 PCTs were approached, 175 (59.3 %) were eligible, and 150 (85.7 %) consented. Consent was limited by the severity of illness in 40 % patients. We found good convergent validity, with strong and moderate correlations (r ranged 0.5-0.8) between similar items from the POS, the QLQ-C15-PAL and the FACIT-Sp. As hypothesised, the physical function subscale of QLQ-C15-PAL was not correlated with any POS item (r ranged -0.16-0.02). We found acceptable to good test re-test reliability in both versions for 6 items. We found significant clinical improvements during the first week of palliative care in 7/10 items assessed-pain, other symptoms, patient and family anxiety, information, feeling at peace and wasted time., Conclusions: Both the patient self-assessed and professional POS versions are valid and with an acceptable internal consistency. POS detected significant clinical improvements during palliative care, at a time when patients are usually expected to deteriorate. These results suggest that there is room for substantial improvement in the management of patients with advanced disease, across all key domains-symptoms, psychological, information, social and spiritual.

Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care., Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research., Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper., Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients' needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed., Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics., (© The Author(s) 2015.)

This study was aimed at piloting a school-based intervention on severe illness, within a project focused on spreading knowledge of palliative care among high school students (phases 0-2 Medical Research Council Framework). The intervention entailed the screening of a topic-related movie, 2 classroom meetings, and the development of a class-based multimedia production. Five classes from 5 high schools participated in this study, and a before-after evaluation was used to assess intervention feasibility and impact. Valid questionnaires were filled in by 84% (before) and 79% (after) of the 89 students. Concerning students' knowledge on palliative care, the after evaluation showed a significantly higher paired proportions of students reporting on "improving patient quality of life" and "life-threatening illness." Intervention components were deemed helpful by students, and positive feedback on the experience was given., (© The Author(s) 2014.)

Background: One of the most crucial palliative care challenges is in determining how patient' needs are defined and assessed. Assessing quality of life has been defined as a priority in palliative care, and it has become a central concept in palliative care practice., Aim: To determine to what extent interventions focused on measuring quality of life in palliative care practice are effective in improving outcomes in palliative care patients., Design: Systematic review according to the recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement and hand searches., Data Sources: MEDLINE, CINAHL, EMBASE, PsycINFO, and the Cochrane Library were searched for articles published until June 2012, and through hand searching from references lists of included articles. Only studies that included adult palliative care patients, in any palliative care clinical practice setting of care, and with an experimental, quasi-experimental, or observational analytical study design were eligible for inclusion. All studies were independently reviewed by two investigators who scored them for methodological quality by using the Edwards Method Score., Results: In total, 11 articles (of 8579) incorporating information from 10 studies were included. Only three were randomized controlled trials. The quality of the evidence was found from moderate to low. Given a wide variability among patients' outcomes, individual effect size (ES) was possible for 6 out of 10 studies, 3 of which found a moderate ES on symptoms (ES = 0.68) and psychological (ES = 0.60) and social (ES = 0.55) dimensions., Conclusion: Effectiveness of interventions focused on quality-of-life assessment is moderate. Additional studies should explore the complexity of the real palliative care world more accurately and understand the effects of independent variables included in complex palliative care interventions., (© The Author(s) 2014.)

Purpose of Review: Studies in different countries and settings of care have reported the quality of care for the dying patients as suboptimal. Care pathways have been developed with the aim of ensuring that dying patients and their family members received by health professionals the most appropriate care. This review presents and discusses the evidence supporting the effectiveness of the end-of-life care pathways., Recent Findings: Two Cochrane systematic reviews updated at June 2013 did not identify studies that met minimal criteria for inclusion. One randomized cluster trial aimed at assessing the effectiveness of the Liverpool Care Pathway in hospitalized cancer patients was subsequently published. The trial did not find a significant difference in the overall quality of care, the primary end-point, but two out of nine secondary outcomes - respect, dignity, and kindness, and control of breathlessness showed significant improvements. Afterwards, we did not find any other potentially eligible published study., Summary: The overall amount of evidence supporting the dissemination of end-of-life care pathways is rather poor. One negative randomized trial suggests the pathways have the potential to reduce the gap between hospital and hospices. Further research is needed to understand the potential benefit of end-of-life care pathways.

This study was aimed at developing and piloting a school-based intervention on severe illness-induced bereavement through a project focused on spreading knowledge of palliative care among high school students (phases 0-II Medical Research Council Framework). The intervention entailed the screening of a topic-related movie and a classroom meeting. Eight classes from 2 high schools participated, and a before-after evaluation was used to assess intervention feasibility and impact. Valid questionnaires, including 2 open-ended questions focusing on bereavement and strategies for coping with loss, were filled in by 89% (before) and 84% (after) of the 159 students. In the after evaluation, content analysis on the "strategies" question showed that answers concerning closeness and sharing were reported more frequently. Positive feedback was collected as regards the overall experience., (© The Author(s) 2013.)

Background: A palliative approach at the end of life typically involves forgoing certain drugs and procedures and starting others - weighing burden against potential benefit. An assessment of the palliative approach may be undertaken by investigating which drugs and procedures are used in the dying phase, and at what frequencies., Methods: Drugs were classified as potentially (in)appropriate based on expert classification. Procedures were classed as therapeutic or diagnostic. 271 consecutive cancer deaths from across 16 hospital general wards and 5 hospices in Italy gathered data on drugs and procedures in the final three days of life through a standardised form. Differences between the two groups were tested using chi-square testing, and logistic regressions were performed to control for patient characteristics., Results: 75.0% of patients in hospital received 3 or more potentially inappropriate drugs in their last three days of life, against 42.6% in hospice. Diagnostic procedures were carried out more frequently in hospital. Multivariate logistic regression showed that when data was controlled for patient characteristics, setting had a unique contribution to the differences found in use of drugs and procedures., Conclusion: The data indicates a need for improvement in the hospital setting concerning recognising the need for palliative care, and ensuring a timely introduction of this approach.

Background: The Liverpool Care Pathway (LCP) is extensively used in hospices, but the literature on the process of implementation is scarce., Aim: Developing, piloting, and preliminarily assessing the LCP program within the inpatient hospice setting., Methods: This is a phase 0-1 study, according to the Medical Research Council (MRC) Framework, divided into three phases: literature review on LCP in hospice and development of the Italian version of the LCP program (LCP-I), development of a procedure for assessing the quality of the implementation process and assessing the feasibility of the implementation process, and piloting the procedure in 7 inpatient Italian hospices., Results: The LCP was implemented in all the hospices involved. A high proportion of physicians (50%-100%) and nurses (94%-100%) attended the self-education program. The self-implementation of the LCP-I program was completed in all hospices. The proportion of patients who died on LCP-I ranged between 35.6% and 89.1%. Professionals from 2 hospices reported a positive impact of the LCP-I. Conversely, professionals from 2 hospices did not recognize a positive impact of the program and did not agree to maintain the LCP-I in hospice. Finally, professionals from the other 3 hospices reported intermediate evaluations (1 stopped to use the LCP-I). Some weaknesses emerged from the external audits, related to the self-education and the self-implementation approach. Professionals required an external support from a trained palliative care team with reference to both phases., Conclusions: The LCP-I implementation within hospices is feasible, and the process of implementation is evaluable. Issues that occurred within the implementation process suggest the introduction of an external support from a trained palliative care team in implementing the LCP program.

Background: The quality of care provided to patients with cancer who are dying in hospital and their families is suboptimum. The UK Liverpool Care Pathway (LCP) for patients who are dying was developed with the aim of transferring the best practice of hospices to hospitals. We therefore assessed the effectiveness of LCP in the Italian context (LCP-I) in improving the quality of end-of-life care for patients with cancer in hospitals and for their family., Methods: In this pragmatic cluster randomised trial, 16 Italian general medicine hospital wards were randomly assigned to implement the LCP-I programme or standard health-care practice. For each ward, we identified all patients who died from cancer in the 3 months before randomisation (preintervention) and in the 6 months after the completion of the LCP-I training programme. The primary endpoint was the overall quality of care toolkit scale. Analysis was by intention to treat. This study is registered with ClinicalTrials.gov, number NCT01081899., Findings: During the postintervention assessment, data were gathered for 308 patients who died from cancer (147 in LCP-I programme wards and 161 in control wards). 232 (75%) of 308 family members were interviewed, 119 (81%) of 147 with relatives cared for in the LCP-I wards (mean cluster size 14·9 [range eight to 22]) and 113 (70%) of 161 in the control wards (14·1 [eight to 22]). After implementation of the LCP-I programme, no significant difference was noted in the distribution of the overall quality of care toolkit scores between the wards in which the LCP-I programme was implemented and the control wards (score 70·5 of 100 vs 63·0 of 100; cluster-adjusted mean difference 7·6 [95% CI -3·6 to 18·7]; p=0·186)., Interpretation: The effect of the LCP-I programme in our study is less than the effects noted in earlier phase 2 trials. However, if the programme is implemented well it has the potential to reduce the gap in quality of care between hospices and hospitals. Further research is needed to ascertain what components of the LCP-I programme might be effective and to develop and assess a wider range of approaches to quality improvement in hospital care for people at the end of their lives and for their families., Funding: Italian Ministry of Health and Maruzza Lefebvre D'Ovidio Foundation-Onlus., (Copyright © 2014 Elsevier Ltd. All rights reserved.)

Background: Hospital is the most common place of cancer death but concerns regarding the quality of end-of-life care remain., Aim: Preliminary assessment of the effectiveness of the Liverpool Care Pathway on the quality of end-of-life care provided to adult cancer patients during their last week of life in hospital., Design: Uncontrolled before-after intervention cluster trial., Settings/participants: The trial was performed within four hospital wards participating in the pilot implementation of the Italian version of the Liverpool Care Pathway programme. All cancer patients who died in the hospital wards 2-4 months before and after the implementation of the Italian version of Liverpool Care Pathway were identified. A total of 2 months after the patient's death, bereaved family members were interviewed using the Toolkit After-Death Family Interview (seven 0-100 scales assessing the quality of end-of-life care) and the Italian version of the Views of Informal Carers - Evaluation of Services (VOICES) (three items assessing pain, breathlessness and nausea-vomiting)., Results: An interview was obtained for 79 family members, 46 (73.0%) before and 33 (68.8%) after implementation of the Italian version of Liverpool Care Pathway. Following Italian version of Liverpool Care Pathway implementation, there was a significant improvement in the mean scores of four Toolkit scales: respect, kindness and dignity (+16.8; 95% confidence interval = 3.6-30.0; p = 0.015); family emotional support (+20.9; 95% confidence interval = 9.6-32.3; p < 0.001); family self-efficacy (+14.3; 95% confidence interval = 0.3-28.2; p = 0.049) and coordination of care (+14.3; 95% confidence interval = 4.2-24.3; p = 0.007). No significant improvement in symptom' control was observed., Conclusions: These results provide the first robust data collected from family members of a preliminary clinically significant improvement, in some aspects, of quality of care after the implementation of the Italian version of Liverpool Care Pathway programme. The poor effect for symptom control suggests areas for further innovation and development.

Context: General practitioners (GPs) play a key role in the end-of-life care of patients; however, currently in Italy, there are no national population-based studies available of the knowledge and activities of GPs in palliative care., Objectives: This survey aimed to investigate the knowledge, opinions, and activities of Italian GPs regarding palliative care., Methods: A telephone survey of 1690 GPs was performed. Information was gathered through an ad hoc questionnaire., Results: Valid interviews were obtained for 88% of the sampled GPs (n=1489). Regarding knowledge, 25% of GPs recognized a correct definition of palliative care, 41% the objectives of palliative care, 66% that palliative care should be provided by a multiprofessional team including GPs, and 60% that in-home care for patients at the end of life requires an individual plan care. Furthermore, 92% of them reported that "there is no maximum daily morphine dose for the management of pain." Regarding opinions, most of the GPs strongly agreed that for patients at the end of life, the GPs' duties included availability during working hours to break bad news to patients and families and to collaborate with the multiprofessional team in establishing an individual care plan. Finally, regarding activities, most GPs reported that, in their daily practice with patients at the end of life, they discontinue the drugs that are not beneficial to symptom management and seek advice from palliative care physicians when symptom management is ineffective., Conclusion: This survey reveals the uncertainty of GPs regarding many theoretical issues but a strong willingness to integrate with the multiprofessional palliative care team. To further enhance the skills of GPs and facilitate the collaboration with palliative care services, it might be useful to realize ad hoc training schemes tailored to the different organizational procedures of in-home palliative care services., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient's life. This study is part of the OPCARE9 project, funded by the European Commission's Seventh Framework Programme., Method: The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings., Results: The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80% expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho-social-spiritual support; response rate 72%, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have "high relevance" by more than 50% of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient's last hours/days of life: "breathing", "general deterioration", "consciousness/cognition", "skin", "intake of fluid, food, others", "emotional state" and "non-observations/expressed opinions/other"., Conclusion: Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.

Background: Palliative Care (PC) is an approach that improves the Quality of Life (QoL). A number of QoL assessment tools have been developed and validated in PC. It is not clear how QoL should be measured in PC practice. A procedure of QoL assessment in clinical practice can be defined as a clinical intervention focused on QoL assessment. This is a typical complex intervention that should be appropriately developed and described in all its components and assessed for its effectiveness. The aim of this study is to define a framework to help researchers to develop and evaluate clinical interventions focused on QoL assessment in PC., Methods: A study group of experts in PC and in research methodology was set up to define a framework that would describe the principles of clinical interventions focused on QoL assessment in PC. The study group discussed the WHO Population Screening Principles as a possible useful framework. The new principles had to be developed taking into account the following criteria: 1) specific to PC practice; 2) address a single underlying characteristic; 3) anchored to relevant literature; 4) consistent with the WHO PC definition.With regard to contents and the format of the principles, discussions occurred among the study group members through a cognitive process., Results: We reviewed each of the WHO Population Screening Principles and adapted them to QoL assessment, taking into account the defined criteria. As a result, a new framework, the QoL Assessment Principles in Palliative Care was developed. It consisted of 4 sections, for a total of 11 principles., Conclusions: The WHO Screening Principles framework was used to outline the eleven essential principles to be considered in developing and/or evaluating clinical interventions focused on QoL assessment in PC. The QoL Assessment Principles in Palliative Care identified could represent a methodological and ethical standard to be considered when developing and evaluating a clinical intervention focused on QoL assessment in PC.

Purpose: Patient-reported outcome measurement (PROM) plays an increasing role in palliative and end-of-life (EOL) care but their use in EOL care and research remains varied and inconsistent. We aimed to facilitate pan-European collaboration to improve PROMs in palliative and EOL care and research., Methods: The study includes a workshop with experts experienced in using PROMs in clinical care and research from Europe, North America, and Africa. Information from presentations, and plenary and group discussions was analysed using content analysis for extracting the main themes., Results: Thirty-two professionals from 15 countries and eight different professional backgrounds participated in the workshop. The discussion identified: 1) the need for standardisation with improvement of existing PROMs, e.g., with a modular system and an optional item pool; 2) the aspects of further development with a multi-professional approach taking into account cultural sensitivity especially for translated versions; and 3) the need for guidance, training, and resources. An international network for sharing concepts, experiences, and solutions could enhance these steps of further development., Conclusion: PROMs must be based on rigorous scientific methods and respond to patient complexity. Coordinated pan-European collaboration including researchers and clinicians is required to develop and attain quality care and systematic research in outcome measurement in palliative and EOL care.

Aims: In this randomised fast-track phase II trial, the authors examined (1) whether the timing of referral to short-term palliative care (PC) affected selected outcomes, and (2) the potential staff-modifying effect of the short-term PC intervention (whether the effects were sustained over time after PC was withdrawn)., Methods: PC comprised a multiprofessional PC team that provided, on average, three visits, with all care completed by 6 weeks. Recruitment commenced in August 2004 and continued for 1 year. Follow-up was performed for 6 months in both groups. Outcomes were a composite measure of five key symptoms (pain, nausea, vomiting, mouth problems and sleeping difficulty) using the Palliative care Outcome Scale-MS Symptom Scale, and care giver burden was measured using the Zarit (Care Giver) Burden Interview (ZBI)., Results: 52 patients severely affected by multiple sclerosis were randomised to receive PC either immediately (fast-track group) or after 12 weeks (control group). Patients had a high level of disability (mean Expanded Disability Status Scale: 7.7; median: 8; SD: 1). Following PC, there was an improvement in Palliative care Outcome Scale-MS Symptom Scale score and ZBI score. A higher rate of improvement in ZBI score was seen in the fast-track group. After withdrawal of PC, effects were maintained at 12 weeks, but not at 24 weeks., Conclusions: Receiving PC earlier has a similar effect on reducing symptoms but greater effects on reducing care giver burden, compared to later referral. In this phase II trial, the authors lacked the power to detect small differences. The effect of PC is maintained for 6 weeks after withdrawal but then appears to wane.

Purpose of Review: To summarize and discuss recent research aimed at evaluating palliative care services, and other complex interventions in end-of-life care., Recent Findings: Innovative approaches for the evaluation of complex interventions are highly relevant in end-of-life care. The Medical Research Council Framework for the development and evaluation of complex interventions uses the classic approach to research for drug development, but with a wider range of study methods, including experimental. This approach has been used in some recent research and has proved useful for the evaluation of effectiveness of palliative care services. Moreover, during recent years some experimental studies have explored feasibility, effectiveness and costs of complex programs to improve the quality of end-of-life care. Finally, the effectiveness of population-based educational interventions has been shown by one study focused on the preferences and attitudes on end-of-life care., Summary: Health services research is crucial in end-of-life care because of the complex services and patients and families cared for. Health services research can provide information about the most effective (and cost-effective) strategies to improve the quality of end-of-life care. During recent years some interesting research and study protocols dealing with the evaluation of complex end-of-life programs have been designed and implemented.

Introduction: There are 1.7 million deaths from cancer in Europe each year and by 2020 the World Health Organisation (WHO) estimates that, globally, more than 15 million people will experience cancer and 10 million will die from it each year. Furthermore, as new therapies are developed, people are living longer with cancer than in the past, and the population with cancer will be older., Materials and Methods: We used epidemiologically based needs assessment approaches to estimate the number of people in Europe with symptoms and problems, published data and reviews to appraise treatment options, issues of communication, family care, bereavement and socio-demographic factors affecting care, and a European survey to consider the types of services. In addition, we used systematic literature review data to appraise the effectiveness of services and factors affecting place of death., Results: The quality of life of virtually all cancer patients with advanced disease is impaired by one or more symptoms, emotional, social, spiritual and communication concerns. Patients have a median of 11 symptoms. In Europe there are up to 1.6 million patients with pain each year, and in around one third of these it will be severe, requiring complex treatment. Almost an equal number are affected by fatigue, and more than 1 in 2 are affected by anxiety and/or depression, breathlessness, insomnia, nausea, constipation and/or anorexia. There is a complex interaction of factors affecting place of death--related to illness, the individual and environment--and although most people want to die at home, in most countries the majority of cancer patients die in hospital. In response to patient and family needs, systematic review shows the effectiveness of palliative care services. However, the distribution of services across Europe is inequitable., Conclusion: Palliative care is becoming increasingly recognised as a vital component of cancer care, but requires investment in research, education and services, incorporating appropriate needs assessment and outcome measurements.

Background: The palliative services and programs have been developed with different intensity and modalities in all countries. Several studies have reported that a geographic variation in the availability and provision of palliative care services between and within countries exists, and that a number of vulnerable groups are excluded from these services. This survey estimates the distribution of places of care for Italian cancer patients during the last three months of their lives, the proportion receiving palliative care support at home and in hospital, and the factors associated with the referral to palliative care services., Methods: This is a mortality follow-back survey of 2,000 cancer deaths identified with a 2-stage probability sample, representative of the whole country. Information on patients' experience was gathered from the non-professional caregiver through an interview, using an adapted version of the VOICES questionnaire. A section of the interview concerned the places of care and the palliative care services provided to patients. Multivariate logistic regression analyses were conducted to identify the determinants of palliative care service use., Results: Valid interviews were obtained for 67% of the identified caregivers (n = 1,271). Most Italian cancer patients were cared for at home (91%) or in hospital (63%), but with substantial differences within the country. Only 14% of Italian cancer patients cared for at home against 20% of those admitted to hospital, received palliative care support. The principal determinants identified for receiving these service were: an extended interval between diagnosis and death (P = 0.01) and the caregiver's high educational level (P = 0.01) for patients at home; the low patient's age (P < 0.01) and the caregiver's high educational level (P = 0.01) for patients in hospital., Conclusion: In Italy palliative care services are not equally available across the country. Moreover, access to the palliative care services is strongly associated with socio demographic characteristics of the patients and their caregivers. Italian Policy-makers need to equalise palliative care provision and access across the country to meet the needs of all cancer patients.

Objective: To describe actual and preferred place of death of Italian cancer patients and to analyse the preferences met regarding the place of death., Design: Mortality follow back survey of 2000 cancer deaths, identified with a two stage probability sample representative of the whole country. Information on patients' experience was gathered from the non-professional caregiver with an interview. A section of the interview covered information on the actual and preferred place of death of the patients., Setting: 30 Italian local health districts randomly selected after stratification in four geographical areas., Participants: 1900 of 2000 (95.0%) caregivers of cancer deaths identified., Main Outcome Measures: Prevalence of actual and preferred places of death., Results: Valid interviews were obtained for 66.9% (n = 1271) of the caregivers. Place of death was home for 57.9% of Italian cancer patients, hospital for 34.6%, hospice for 0.7%, nursing home for 6.5%, and ambulance for 0.4%. Wide and significant differences within Italy were seen (home deaths ranged between 94.0% in the south and 28.2% in the north east). Home was the preferred place of death for 93.5% of patients that expressed a preference, with minimal differences within the country (between 89.5% and 99.0%). Overall 67.1% of the sample died in the place where they preferred to die., Conclusions: Policymakers should encourage health services to focus on ways of meeting individual preferences on place of death. As home was the preferred place of death for most cancer patients, effective programmes to enable the patients to remain at home should be implemented.

This was a quasi-experimental study designed to determine whether, in patients with advanced cancer, a palliative home care team (PHCT) modified hospital utilization in the last six months before death. Of 2503 cancer deaths in the municipality of Genoa, Italy, in 1991, 189 (7.5%) received care from a PHCT. Three hundred and seventy-eight controls matched for primary tumour were selected. The groups were similar in terms of age, gender and most other demographic variables, except that educational level was lower, and times to death, from first diagnosis and from diagnosis of advanced or metastatic cancer, were longer among PHCT patients compared with the controls. Before referral to a PHCT, or a matched time in controls, both groups spent about 15% of days in hospital. After admission to a PHCT, the percentages of days in hospital increased in both groups as death approached, but it was much higher in the control group (30.3%; 95% confidence interval (CI): 26-34) than in the PHCT group (19.0%; 95% CI: 15-23). The difference between groups was most marked in the last month of life, and disappeared among those patients who were in care for more than 120 days (throughout the course of their illness). We conclude that a PHCT appears to reduce days in hospital and allows patients to spend more time at home. Differences in time in care between groups requires further investigations.

This study describes the characteristics of a representative sample of terminally ill cancer patients at admission to Italian palliative care programs, the rate and reasons for discontinuation of care, and survival after enrollment. All Italian palliative care units (PCUs) specifically committed to palliative care were asked to consecutively register all new patients (n = 3901) between January and June, 1995. Fifty-eight of the 62 PCUs contacted by the Steering Committee completed the study. A random sample of 589 evaluable patients was prospectively selected from the 2667 eligible patients. Patients were mostly referred by a general practitioner (31.2%) or a specialist (42.1%). Most patients (84.7%) were followed until death. Seventy-seven discontinued care because of hospital admission (6.6%), change of residence (3.9%), refusal (1.7%), or improvement (0.8%). Median survival was 37.9 days; 14.3% of the patients died within 7 days, and 15.3% lived longer than 180 days. A statistically significant association between survival and gender, cancer type, setting of the first visit, and type of unit was observed. In Italy, as in other countries with different health systems, referral of cancer patients to palliative care tends to occur late in the course of the disease. This study suggests that the process of enrollment and the duration of patients' survival in palliative care, when studied in large unselected populations, can provide important information relevant to the care of terminally ill patients.

Outcome in palliative care can be defined as patients' quality of life, quality of death and satisfaction with care. In an Italian multicentre prospectic study ('Staging') the quality of life of 571 palliative care patients with advanced cancer disease was assessed since the beginning of palliative care till the end of the study. We analyzed the tissue of quality of life missing data and the possibility to input the missing quality of life evaluation through the quality of life evaluation made by a proxy (doctor, nurse). The greatest functional impairment and an increasing level of some symptoms (fatigue, general malaise, emotional status) were observed during the last two weeks of life, whereas for other symptoms (gastro-intestinal, pain) some degree of control was possible. The quality of life analysis for palliative care patients should consider the different response of different quality of life components to the palliative care intervention.

As part of a large multicentre study on palliative care units in Italy, carried out between 1 January and 30 June 1995, we describe the place, circumstances and 'quality of death' of patients admitted to home palliative care. Data presented refer to 401 patients (67% of the 601 patients randomly selected for evaluation). Of these 401 patients 303 (76%) died at home. According to the Support Team Assessment Schedule (STAS) pain was fairly well controlled during the final week of life, while the control of other symptoms appeared to be less satisfactory. Invasive procedures were undertaken on 56% of patients, while in hospital the percentage increased to 75%. Twenty-five per cent of patients were totally pharmacologically sedated during the final 12 h of life. Neither the number of symptoms nor other factors were apparently associated with the decision to sedate the patient. The wide variations in the frequency of sedation among centres suggest that the choice to sedate the patient may reflect the provider's behaviour or services' policy rather than the patients' preference or needs. The definition of common criteria and guidelines for sedation of patients should be one of the topics for discussion among palliative care teams.

This population-based study of all cancer deaths (n = 12,343) occurring in Genoa, Italy, from 1986 to 1990 investigated the relation between place of death and age, sex, marital status, education, cancer site and provision of palliative home care (PHC). The proportion of home deaths significantly increased from 27.9% (1986) to 33.0% (1990) and was twice as frequent among PHC users (60.8%) than among nonusers (29.3%). The number of patients dying of cancer who received PHC increased from 41 in 1986 (1.6% of cancer deaths) to 191 in 1990 (8.0% of cancer deaths). PHC users, when compared to nonusers were younger, more frequently married, had a higher level of education and were more frequently affected by cancers of the lung, breast or prostate. Multivariate analysis shows that the probability of home death increased with increasing age and education level and was higher in females and in married patients. The provision of PHC was the strongest predictor of home death (OR = 4.00; 95% CI = 3.33-4.81), while the temporal trend almost disappeared. These results suggest that most of the increase in home deaths from 1986 to 1990 is attributable to the PHC and that expansion of the PHC services may enable about 60% of cancer patients to die at home. These results appear to be desirable from the individual patient's viewpoint and in a public health perspective.

Background: With increasingly intensive treatments and population ageing, more people face complex treatment and care decisions. We explored patterns of the decision-making processes during critical care, and sources of conflict and resolution. Methods: Ethnographic study in two Intensive Care Units (ICUs) in an inner city hospital comprising: non-participant observation of general care and decisions, followed by case studies where treatment limitation decisions, comfort care and/or end of life discussions were occurring. These involved: semi-structured interviews with consenting families, where possible, patients; direct observations of care; and review of medical records. Results: Initial non-participant observation included daytime, evenings, nights and weekends. The cases were 16 patients with varied diagnoses, aged 19-87 years; 19 family members were interviewed, aged 30-73 years. Cases were observed for <1 to 156 days (median 22), depending on length of ICU admission. Decisions were made serially over the whole trajectory, usually several days or weeks. We identified four trajectories with distinct patterns: curative care from admission; oscillating curative and comfort care; shift to comfort care; comfort care from admission. Some families considered decision-making a negative concept and preferred uncertainty. Conflict occurred most commonly in the trajectories with oscillating curative and comfort care. Conflict also occurred inside clinical teams. Families were most often involved in decision-making regarding care outcomes and seemed to find it easier when patients switched definitively from curative to comfort care. We found eight categories of decision-making; three related to the care outcomes (aim, place, response to needs) and five to the care processes (resuscitation, decision support, medications/ fluids, monitoring/interventions, other specialty involvement). Conclusions: Decision-making in critical illness involves a web of discussions regarding the potential outcomes and processes of care, across the whole disease trajectory. When measures oscillate between curative and comfort there is greatest conflict. This suggests a need to support early communication, especially around values and preferred care outcomes, from which other decisions follow, including DNAR. Offering further support, possibly with expert palliative care, communication, and discussion of ‘trial of treatment' may be beneficial at this time, rather than waiting until the ‘end of life’. [ABSTRACT FROM AUTHOR]

Background: The benefits and burdens of artificial nutrition (AN) and artificial hydration (AH) in end-of-life care are unclear. We carried out a literature review on the use of AN and AH in the last days of life of cancer patients.Materials and methods: We systematically searched for papers in PubMed, CINAHL, PsycInfo and EMBASE. All English papers published between January 1998 and July 2009 that contained data on frequencies or effects of AN or AH in cancer patients in the last days of life were included.Results: Reported percentages of patients receiving AN or AH in the last week of life varied from 3% to 53% and from 12% to 88%, respectively. Five studies reported on the effects of AH: two found positive effects (less chronic nausea, less physical dehydration signs), two found negative effects (more ascites, more intestinal drainage) and four found also no effects on terminal delirium, thirst, chronic nausea and fluid overload. No study reported on the sole effect of AN.Conclusions: Providing AN or AH to cancer patients who are in the last week of life is a frequent practice. The effects on comfort, symptoms and length of survival seem limited. Further research will contribute to better understanding of this important topic in end-of-life care. [ABSTRACT FROM AUTHOR]