Luc Deliens

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

EHRA Expert Consensus Statement on the management of cardiovascular implantable electronic devices in patients nearing end of life or requesting withdrawal of therapy

The purpose of this Consensus Statement is to focus on implantable cardioverter-defibrillator (ICD) deactivation in patients with irreversible or terminal illness. This statement summarizes the opinions of the Task Force members, convened by the European Heart Rhythm Association (EHRA) and the Heart Rhythm Society (HRS), based on ethical and legal principles, as well as their own clinical, scientific, and technical experience. It is directed to all healthcare professionals who treat patients with implanted ICDs, nearing end of life, in order to improve the patient dying process. This statement is not intended to recommend or promote device deactivation. Rather, the ultimate judgement regarding this procedure must be made by the patient (or in special conditions by his/her legal representative) after careful communication about the deactivations consequences, respecting his/her autonomy and clarifying that he/she has a legal and ethical right to refuse it. Obviously, the physician asked to deactivate the ICD and the industry representative asked to assist can conscientiously object to and refuse to perform device deactivation.

Place of death of older persons with dementia. A study in five European countries

The aging of the European population will lead to a rapid increase in dementia cases in the coming decades, posing challenges for the organization and provision of end‐of‐life care. Studying the place of death of patients with dementia, and what determines it, is relevant in this context. Using death certificates, the deaths of people aged 65 and older whose underlying cause of death was a dementia‐related disease was studied in Belgium, the Netherlands, England, Scotland, and Wales. Between 50% (Wales) and 92% (Netherlands) of patients with dementia died in a nursing home and between 3% (Netherlands) and 46% (Wales) in hospital. Home death was rare (3–5%) except in Belgium (11%). Multivariate analysis showed that place of death was related to age, sex, available hospital and nursing home beds, and country of residence. Although availability of hospital and nursing home beds partially explained the variation between countries, considerable variation remained even after controlling for that, plus age, sex, and social support. Place of death from dementia differed significantly between the countries studied. In all countries, a majority of patients with dementia died in a long‐term care facility. The provision of appropriate long‐term care facilities with appropriate staffing could be the primary policy instrument that could help patients with dementia avoid dying in the hospital and ensure quality of end‐of‐life care in Europe.

Which Patients With Cancer Die at Home? A Study of Six European Countries Using Death Certificate Data

PURPOSE This study examines the proportion of cancer deaths occurring at home in six European countries in relation to illness and to demographic and health care factors. METHODS Death certificate data of all cancer-related deaths in 2002 in Italy and 2003 in Belgium, the Netherlands, Norway, England, and Wales (N = 238,216) were linked with regional health care and area statistics. Multivariate binomial logistic regressions were performed to examine factors associated with dying at home. RESULTS The percentage of all cancer deaths occurring at home was 12.8 in Norway, 22.1 in England, 22.7 in Wales, 27.9 in Belgium, 35.8 in Italy, and 45.4 in the Netherlands. Having solid cancers and being married increased the chances of dying at home in all countries. Being older and being a woman decreased the chances of dying at home, except in Italy where the opposite was the case. A higher educational attainment was associated with better chances of dying at home in Belgium, Italy, and Norway (countries where information on educational attainment was available). Better chances of dying at home were also associated with living in less urbanized areas in all countries but England. The number of hospital and care home beds seemed not to be universally strong predictors of dying at home. CONCLUSION There are large country differences in the proportion of patients with cancer dying at home, and these seem influenced by country-specific cultural, social, and health care factors. Alongside cross-national differences, country-specific aspects need to be considered in the development of policy strategies facilitating home death.

Population-based study of dying in hospital in six European countries.

This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.

Medical End-of-Life Practices under the Euthanasia Law in Belgium

The legalization of physician-assisted death for terminally ill patients is a controversial medical and societal issue. These authors investigated differences in the frequency and characteristics of these practices before and after the enactment of a law in Belgium, where euthanasia was legalized in 2002.

Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions?: a systematic review

CONTEXT If access to effective palliative care is to extend beyond cancer patients, an understanding of the comparative prevalence of palliative care problems among cancer and non-cancer patients is necessary. OBJECTIVES This systematic review aimed to describe and compare the prevalence of seventeen palliative care-related problems across the four palliative care domains among adults with advanced cancer, acquired immune deficiency syndrome, chronic heart failure, end-stage renal disease (ESRD), chronic obstructive pulmonary disease, multiple sclerosis, motor neuron disease, Parkinsons disease, and dementia. METHODS Three databases were searched using three groups of keywords. The results of the extraction of the prevalence figures were summarized. RESULTS The electronic searches yielded 4697 hits after the removal of 1784 duplicates. Of these hits, 143 met the review criteria. The greatest number of studies were found for advanced cancer (n=57) and ESRD patients (n=47), and 75 of the 143 studies used validated scales. Few data were available for people living with multiple sclerosis (n=2) and motor neuron disease (n=3). The problems with a prevalence of 50% or more found across most of the nine studied diagnostic groups were: pain, fatigue, anorexia, dyspnea, and worry. CONCLUSION There are commonalities in the prevalence of problems across cancer and non-cancer patients, highlighting the need for palliative care to be provided irrespective of diagnosis. The methodological heterogeneity across the studies and the lack of non-cancer studies need to be addressed in future research.

Quality indicators for palliative care: a systematic review.

Research has demonstrated a greater understanding of the needs of terminally ill patients and their families, but it also has been found that the palliative care is not optimal. Because of a lack of quality indicators in palliative care, the quality of the care is often not assessed. The aim of this systematic review was to give an overview of published quality indicators for palliative care in all patient groups and settings, to determine whether these quality indicators cover all domains of palliative care, to describe the different types of quality indicators, and to determine the methodological characteristics of the quality indicators. Relevant studies were identified by searching computerized databases up to December 2007. Publications describing the development process or characteristics of quality indicators for palliative care were selected by two reviewers independently. An additional selection criterion was that numerators and denominators were either defined or could be deduced from the descriptions. The data extraction involved the general description and type of the quality indicator, target population, and applicable setting. We identified 650 publications, of which 16 met the inclusion criteria. These publications described eight sets of quality indicators. These sets contained 142 overlapping quality indicators, covering all but one domain (cultural aspects) of palliative care. Most quality indicators referred to the outcomes or processes of palliative care. The methodological characteristics of the quality indicators varied considerably. We conclude that a substantial number of quality indicators for palliative care are available, but most have not been described in detail. More detailed methodological specifications are needed to accurately monitor the quality of palliative care.

Evaluation of quality-of-life measures for use in palliative care: A systematic review

Purpose: In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. Methods: We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. Results: 29 instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. Conclusions: Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.

Perceived barriers and facilitators for general practitioner-patient communication in palliative care: A systematic review

While effective general practitioner (GP)–patient communication is required for the provision of good palliative care, barriers and facilitators for this communication are largely unknown. We aimed to identify barriers and facilitators for GP–patient communication in palliative care. In a systematic review seven computerized databases were searched to find empirical studies on GP–patient communication in palliative care. Fifteen qualitative studies and seven quantitative questionnaire studies were included. The main perceived barriers were GPs’ lack of availability, and patients’ and GPs’ ambivalence to discuss ‘bad prognosis’. Main perceived facilitators were GPs being available, initiating discussion about several end-of-life issues and anticipating various scenarios. Lack of availability and failure to discuss former mistakes appear to be blind spots of GPs. GPs should be more forthcoming to initiate discussions with palliative care patients about prognosis and end-of-life issues. Empirical studies are needed to investigate the effectiveness of the perceived barriers and facilitators.