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Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations. [ABSTRACT FROM AUTHOR]

Background: Euthanasia has been regulated by law under strict conditions in the Netherlands since 2002. Since then the number of euthanasia cases has constantly increased, and increased exponentially for patients with dementia (PWD). The number of euthanasia requests by such patients is even higher. Recently, an interview study showed that physicians who are confronted with a PWD's euthanasia request experience problems with communication, pressure from relatives, patients, and society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the physician and patient may interpret the right moment for euthanasia differently.Aim: To identify ways of supporting GPs confronted with a PWD's euthanasia request.Design and Setting: Two expert nominal group meetings were organised with Dutch care physicians for older people, GPs, legal experts, a healthcare chaplain, a palliative care consultant, and a psychologist.Method: A total of 15 experts participated in the meetings. Both meetings were audio-recorded, transcribed verbatim, and analysed using thematic analysis.Results: Four themes emerged from the meetings: support provided by healthcare professionals, influencing public opinion, educational activities, and managing time and work pressure. The need for support was considered highest for GPs for all of these themes.Conclusion: Consensus was reached with the help of experts on support needs for GPs confronted with euthanasia requests from PWD. A concise and clear explanation of the law is strongly desired. Changing public opinion seems the most challenging and a long-term aim. Communication training for finding the right balance between the physician's professional responsibility and the patient's autonomy should be made available, as a short-term aim. [ABSTRACT FROM AUTHOR]

Background There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe. Methods and design The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study. Discussion It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe. [ABSTRACT FROM AUTHOR]

To examine how relatives evaluate the quality of communication with the treating physician of a dying resident in long-term care facilities (LTCFs) and to assess its differences between countries. A cross-sectional retrospective study in a representative sample of LTCFs conducted in 2015. Relatives of residents who died during the previous 3 months were sent a questionnaire. 761 relatives of deceased residents in 241 LTCFs in Belgium, England, Finland, Italy, the Netherlands, and Poland. The Family Perception of Physician-Family Communication (FPPFC) scale (ratings from 0 to 3, where 3 means the highest quality) was used to retrospectively assess how the quality of end-of-life communication with treating physicians was perceived by relatives. We applied multilevel linear and logistic regression models to assess differences between countries and LTCF types. The FPPFC score was the lowest in Finland (1.4 ± 0.8) and the highest in Italy (2.2 ± 0.7). In LTCFs served by general practitioners, the FPPFC score differed between countries, but did not in LTCFs with on-site physicians. Most relatives reported that they were well informed about a resident's general condition (from 50.8% in Finland to 90.6% in Italy) and felt listened to (from 53.1% in Finland to 84.9% in Italy) and understood by the physician (from 56.7% in Finland to 85.8% in Italy). In most countries, relatives assessed the worst communication as being about the resident's wishes for medical treatment at the end of life, with the lowest rate of satisfied relatives in Finland (37.6%). The relatives' perception of the quality of end-of-life communication with physicians differs between countries. However, in all countries, physicians' communication needs to be improved, especially regarding resident's wishes for medical care at the end of life. Training in end-of-life communication to physicians providing care for LTCF residents is recommended. [ABSTRACT FROM AUTHOR]

Objectives Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. Design and Methods To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes. [ABSTRACT FROM AUTHOR]