[Palliative care: medicine challenged to change skin.].

The spread of palliative care in Italy encountered many difficulties and took place outside - if not despite - the health establishment and medical academia. The lack of a recognized role has conditioned for years the work and lives of the doctors who have dedicated themselves to it. Now the diffusion of palliative care and its institutional acknowledgement have obtained the establishment of specific schools of speciality.

The last week of life of nursing home residents with advanced dementia: a retrospective study.

Background: Barriers to palliative care still exist in long-term care settings for older people, which can mean that people with advanced dementia may not receive of adequate palliative care in the last days of their life; instead, they may be exposed to aggressive and/or inappropriate treatments. The aim of this multicentre study was to assess the clinical interventions and care at end of life in a cohort of nursing home (NH) residents with advanced dementia in a large Italian region.

Methods: This retrospective study included a convenience sample of 29 NHs in the Lombardy Region.

The Impact of Nursing Homes Staff Education on End-of-Life Care in Residents With Advanced Dementia: A Quality Improvement Study.

Context: End-of-life care in nursing homes (NHs) needs improvement. We carried out a study in 29 NHs in the Lombardy Region (Italy).

Objectives: The objective of this study was to compare end-of-life care in NH residents with advanced dementia before and after an educational intervention aimed to improving palliative care.

Pneumonia in Nursing Home Patients With Advanced Dementia: Decisions, Intravenous Rehydration Therapy, and Discomfort.

Background: Comfort may be an appropriate goal in advanced dementia. Longitudinal studies on physician decision-making and discomfort assessed by direct observation are rare, and intravenous rehydration therapy is controversial.

Methods: To assess treatment decisions and discomfort in patients with advanced dementia and pneumonia and to compare by intravenous rehydration therapy, we used data from the observational multicenter Italian End of Life Observatory-Prospective Study On DEmentia patients Care.

Critical decisions for older people with advanced dementia: a prospective study in long-term institutions and district home care.

Objective: To describe and compare the decisions critical for survival or quality of life [critical decisions (CDs)] made for patients with advanced dementia in nursing homes (NHs) and home care (HC) services.

Design: Prospective cohort study with a follow-up of 6 months.

Setting: Lombardy Region (NHs) and Reggio-Emilia and Modena Districts (HC), Italy.

Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries.

Background: Care homes are increasingly becoming places where people spend the final stages of their lives and eventually die. This trend is expected to continue due to population ageing, yet little is known about public preferences regarding this setting. As part of a larger study examining preferences and priorities for end of life care, we investigated the extent to which care homes are chosen as the least preferred place of death, and the factors associated with this negative preference.

Priorities for treatment, care and information if faced with serious illness: a comparative population-based survey in seven European countries.

Background: Health-care costs are growing, with little population-based data about people's priorities for end-of-life care, to guide service development and aid discussions.

Aim: We examined variations in people's priorities for treatment, care and information across seven European countries.

Design: Telephone survey of a random sample of households; we asked respondents their priorities if 'faced with a serious illness, like cancer, with limited time to live' and used multivariable logistic regressions to identify associated factors.

'Burden to others' as a public concern in advanced cancer: a comparative survey in seven European countries.

Background: Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this.

Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe.

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness.

Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain.

Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan.

Background: The families of people with late-stage dementia need to be informed about the course of the dementia and the comfort/palliative care option. A booklet was written for that purpose and can be provided to family members by physicians and nurses.

Methods: The acceptability of the booklet for nurses was tested in Canada (French and English version), France (French Canadian version) and Japan (translated and adapted version).

To be involved or not to be involved: a survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe.

Background: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand.

Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors.

Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation.

Introduction: Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive.

Methods: To support families in Canada, a booklet was developed to aid decision making on palliative care issues.

Culture is a priority for research in end-of-life care in Europe: a research agenda.

Context: Culture has a profound influence on our understanding of what is appropriate care for patients at the end of life (EoL), but the evidence base is largely nonexistent.

Objectives: An international workshop was organized to compile a research agenda for cultural issues in EoL research, and assess challenges and implications of the integration of the culture concept in different contexts.

Methods: Participant experts were identified from the expert network established through an Internet-based call for expertise on culture and EoL care and from meetings.

Culture and end of life care: a scoping exercise in seven European countries.

Aim: Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries.

Methods: We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages.

Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care.

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.

End-of-life care across Southern Europe: a critical review of cultural similarities and differences between Italy, Spain and Portugal.

Evidence from a range of sources demonstrates that end-of-life (EoL) care practices and preferences vary across countries; culture is consistently one of the main explanations given for this. In order to understand how cultural factors are used to explain similarities and differences in EoL care between Spain, Italy and Portugal, database and hand searches were performed and cross-cutting core themes identified. Similarities included higher proportions of people who wished to die at home than actually died at home, a persistent trend for partial disclosure in Italy and Spain, low use of advance directives, and low incidence of all medical EoL decisions (with the exception of terminal sedation) compared to northern European countries.

What is the methodological rigour of palliative care research in long-term care facilities in Europe? A systematic review.

Background: The European population is rapidly ageing, resulting in increasing numbers of older people dying in long-term care facilities. There is an urgent need for palliative care in long-term care facilities.

Aim: The aim of this study was to systematically review the literature on palliative care research in long-term care facilities in Europe with respect to how the palliative care populations were described, and to determine the study designs and patient outcome measures utilized.

Physicians' and nurses' perceived usefulness and acceptability of a family information booklet about comfort care in advanced dementia.

Background: Families of patients with advanced dementia need to be informed about the course of the dementia and comfort care. Conditional for health care providers educating families is their knowledge and comfort in family education.

Methods: Perceived usefulness and acceptability of a Canadian family booklet explaining possible complications and comfort care in dementia was assessed by physicians and nurses caring for dementia patients in 14 nursing homes in Lombardy, Italy and 21 in the Netherlands.

A family booklet about comfort care in advanced dementia: three-country evaluation.

Objectives: To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations.

Design: Retrospective study.

Setting: Long term care facilities in French-speaking Canada, and the Netherlands and Italy.

What "best practice" could be in Palliative Care: an analysis of statements on practice and ethics expressed by the main Health Organizations.

Background: In palliative care it would be necessary to refer to a model. Nevertheless it seems that there are no official statements which state and describe that model. We carried out an analysis of the statements on practice and ethics of palliative care expressed by the main health organizations to show which dimensions of end-of-life care are taken into consideration.

Off-label prescriptions in Italian hospices: a national survey.

Off-label prescription is part of routine care in palliative medicine, but no information is available about the situation in Italy. A cross-sectional observational survey was undertaken on all 66 Italian palliative care freestanding inpatient units to describe off-label prescriptions. Data were collected on 507 patients.

Dying with advanced dementia in long-term care geriatric institutions: a retrospective study.

Objective: The aim of this study is to describe the last month of life of severely demented elders in long-term care institutions, and the clinical decisions in the management of their end-of-life events.

Design: Retrospective exploratory study.

Setting: Seven Italian long-term care institutions with more than 200 beds.

Validation of the Italian version of the Discomfort Scale - Dementia of Alzheimer Type.

Aim: This paper is a report of a study to validate the Discomfort Scale - Dementia of Alzheimer Type in Italian.

Background: Dementia is a long and highly debilitating illness with a slow course and a steadily rising prevalence. Improving the quality of life of patients with dementia requires instruments to measure their problems and symptoms, because they are unable to communicate and interact with others.