Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

BackgroundThe long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure.ObjectiveTo identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia.MethodFive focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis.ResultsThree types of barriers were distinguished: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occured more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP.ConclusionThe results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions.

Objective The aim of this systematic review is to identify the perceived factors hindering or facilitating GPs in engaging in advance care planning (ACP) with their patients about care at the end of life. Design Studies from 1990 to 2011 were found in four electronic databases (PubMed, CINAHL, EMBASE, PsycINFO); by contacting first authors of included studies and key experts; and searching through relevant journals and reference lists. Studies were screened, graded for quality, and analysed independently by two authors; those reporting the perception by GPs of barriers and facilitators to engagement in ACP were included. Results Eight qualitative studies and seven cross-sectional studies were included for data extraction. All barriers and facilitators identified were categorized as GP characteristics, perceived patient factors, or health care system characteristics. Stronger evidence was found for the following barriers: lack of skills to deal with patients’ vague requests, difficulties with defining the right moment, the attitude that it is the patient who should initiate ACP, and fear of depriving patients of hope. Stronger evidence was found for the following facilitators: accumulated skills, the ability to foresee health problems in the future, skills to respond to a patient's initiation of ACP, personal convictions about who to involve in ACP, and a longstanding patient–GP relationship and the home setting. Conclusion Initiation of ACP in general practice may be improved by targeting the GPs’ skills, attitudes, and beliefs but changes in health care organization and financing could also contribute.

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.

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. J Am Geriatr Soc 58: 751-756, 2010.

IntroductionAlthough many terminally ill people are admitted to an intensive care unit (ICU) at the end of life, their care is often inadequate because of poor communication by physicians and lack of patient- and family-centred care. The aim of this systematic literature review was to describe physician-related barriers to adequate communication within the team and with patients and families, as well as barriers to patient- and family-centred decision-making, towards the end of life in the ICU. We base our discussion and evaluation on the quality indicators for end-of-life care in the ICU developed by the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup.MethodFour electronic databases (MEDLINE, Embase, CINAHL and PsycINFO) were searched, using controlled vocabulary and free text words, for potentially relevant records published between 2003 and 2013 in English or Dutch. Studies were included if the authors reported on physician-related and physician-reported barriers to adequate communication and decision-making. Barriers were categorized as being related to physicians’ knowledge, physicians’ attitudes or physicians’ practice. Study quality was assessed using design-specific tools. Evidence for barriers was graded according to the quantity and quality of studies in which the barriers were reported.ResultsOf 2,191 potentially relevant records, 36 studies were withheld for data synthesis. We determined 90 barriers, of which 46 were related to physicians’ attitudes, 24 to physicians’ knowledge and 20 to physicians’ practice. Stronger evidence was found for physicians’ lack of communication training and skills, their attitudes towards death in the ICU, their focus on clinical parameters and their lack of confidence in their own judgment of their patient’s true condition.ConclusionsWe conclude that many physician-related barriers hinder adequate communication and shared decision-making in ICUs. Better physician education and palliative care guidelines are needed to enhance knowledge, attitudes and practice regarding end-of-life care. Patient-, family- and health care system–related barriers need to be examined.Electronic supplementary materialThe online version of this article (doi:10.1186/s13054-014-0604-z) contains supplementary material, which is available to authorized users.

Background:Where people die can influence a number of indicators of the quality of dying. We aimed to describe the place of death of people with cancer and its associations with clinical, socio-demographic and healthcare supply characteristics in 14 countries.Methods:Cross-sectional study using death certificate data for all deaths from cancer (ICD-10 codes C00-C97) in 2008 in Belgium, Canada, Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (2010), USA (2007) and Wales (N=1 355 910). Multivariable logistic regression analyses evaluated factors associated with home death within countries and differences across countries.Results:Between 12% (South Korea) and 57% (Mexico) of cancer deaths occurred at home; between 26% (Netherlands, New Zealand) and 87% (South Korea) occurred in hospital. The large between-country differences in home or hospital deaths were partly explained by differences in availability of hospital- and long-term care beds and general practitioners. Haematologic rather than solid cancer (odds ratios (ORs) 1.29–3.17) and being married rather than divorced (ORs 1.17–2.54) were most consistently associated with home death across countries.Conclusions:A large country variation in the place of death can partly be explained by countries' healthcare resources. Country-specific choices regarding the organisation of end-of-life cancer care likely explain an additional part. These findings indicate the further challenge to evaluate how different specific policies can influence place of death patterns.

The large differences between countries in and beyond Europe in the place of death of people in potential need of palliative care are not entirely attributable to sociodemographic characteristics, cause of death or availability of healthcare resources, which suggests that countries' palliative and end-of-life care policies may influence where people die.