Culture Is a Priority for Research in End-of-Life Care in Europe: A Research Agenda

We are pleased to announce that the Journal of Pain and Symptom Management has published the PRISMA project’s research agenda for culture and end-of-life care as a special article.

The abstract can be found below and the full article can be accessed here.

Abstract

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. The workshop comprised presentations of research priorities from country and disciplinary perspectives, and group discussions. Analysis used all data gathered in the workshop and applied standard qualitative techniques.

Results

Thirty experts participated in the workshop and identified the following priorities for cross-cultural research: 1) clarifying the concepts of culture and cultural competence; 2) defining EoL in a context of social and cultural diversity, with a focus on concepts of EoL care and bioethics, experiences of receiving and giving EoL care, and care practices in different settings; and 3) developing appropriate methodologies and outcome measurements that address diversity.

Conclusion

This first pan-European meeting compiled a research agenda, identifying key areas for future research focusing on culture, diversity, and their operationalization. This requires international and multidisciplinary collaboration, which is necessary in the current efforts to synthesize best practices in EoL care.

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

A recently published article from the PRISMA project provides a general overview of cultural issues in end of life care in seven European countries.

The abstract can be found below or the full article can be accessed here.

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. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes.

Results

A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities.

Conclusion

This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

Death Matters Exhibition – Tropenmuseum, Amsterdam

“Death Matters” is a new exhibition at the Tropenmuseum (Amsterdam, the Netherlands).

The exhibition focuses mainly on material culture and the rituals of death and dying. Different perspectives about what occurs after death are also examined and contrasted and visitors are encouraged to think about how they themselves would like to be remembered through a number of interactive activities.

For more information click here

EuroImpact – Experienced Researcher (4 positions)

EuroImpact is a multi-disciplinary educational programme aimed at monitoring and improving palliative care in Europe.

EuroImpact is recruiting four experienced researchers to be based in London, Lancaster, Amsterdam and Brussels.

Description of individual research projects and institutes

Researcher 1 together with researcher 2: Developing a handbook on palliative care for older people

Researcher 1:

Work site: The Vrije Universiteit Brussel, End-of-Life Care Research Group, Brussels, Belgium for 2 years (and expected to travel to Switzerland for 3 months).

Deadline for application: March 15 2012 (provisional)

Starting date: from June 1 2012 (negotiable)

Researcher 2:

Work site: VU University Medical Center and EMGO Institute in Amsterdam, the Netherlands for 1.5 years (and expected to travel to Belgium for 3 months)

Deadline for application: June 1 2012 (provisional)

Starting date: from Dec 1 2012 (negotiable)

Research project: Aim is to develop a handbook on palliative care for older people using the scientific output of the different PhD students already working in the project and working together with expert institutes conducting research in this field. An international editorial board will be set up reflecting the different important disciplines involved in palliative care for older people.

Other key activities include: to undertake research in the field of palliative and end-of-life care in a European context, to prepare reports and scientific publications, to assist in the dissemination of results, and to represent the project and department and to attend and provide research training specific to the project.

Contact persons:

Researcher 1 (Vrije Universiteit Brussel, Belgium):

Prof dr Lieve Van den Block – Tel +32 474 78 18 72 – Email: lvdblock@vub.ac.be

Researcher 2 (VU University Medical Center and EMGO Institute, the Netherlands):

Prof dr Bregje Onwuteaka-Philipsen – Tel +31 204 44 83 85 – Email: b.philipsen@vumc.nl

Researcher 3: Developing a guideline on symptom assessment and clinical applicability of computer symptom assessment

Work site: King’s College London, London, Cicely Saunders Institute, London, UK (www.csi.kcl.ac.uk) for 1.5 years (and expected to travel to the Norwegian University of Science and Technology, Pain and Palliation Research Group, Trondheim, Norway, for 3 months)

Deadline for application: March 15 2012 (provisional)

Starting date: from June 1 2012 (negotiable)

Research project: Aim is to develop an evidence based guideline on the clinical applicability of symptom assessment using the scientific output of the different PhD students already working in the project together with conducting original research, and working with experts in this field. Guideline development will follow standard methods, and involved the other organizations in EUROIMPACT.

Other key activities include: to undertake research in the field of palliative and end-of-life care in a European context, to prepare reports and scientific publications, to assist in the dissemination of results, and to represent the project and department and to attend and provide research training specific to the project.

Contact persons:

Prof dr Irene Higginson – Tel  + 44 207 848 5516 – Email irene.higginson@kcl.ac.uk / palliativecare@kcl.ac.uk

Dr Richard Harding – Tel +44 207 848 8184 – Email richard.harding@kcl.ac.uk

Mrs Lucy Bradley – Tel + 44 207 848 5518 – Email lucy.bradley@kcl.ac.uk

Researcher 4: Developing a guideline on palliative sedation

Work site: Lancaster University, International Observatory on End-of-Life Care, Lancaster, UK for 1.5 years (and expected to travel to the VU University Medical Center and EMGO Institute in Amsterdam, the Netherlands, for 3 months)

Deadline for application: January 31 2012

Starting date: from June 1 2012

Research project: Aim is to evaluate the practice of palliative sedation until death, also called terminal sedation when food and fluid are forgone, in different European countries. Recent studies have shown that the prevalence of this end-of-life decision has grown substantially in the past decades, in contrast to the empirical information about it. Research into how, why, where and by whom it is practiced is high on the agenda of palliative care research. The researcher will use several retrospective and prospective quantitative and qualitative data sets that have been or are being gathered across Europe eg. questionnaires and interviews with physicians and nurses, studies in the nursing home setting.

Other key activities include: to undertake research in the field of palliative and end-of-life care in a European context, to prepare reports and scientific publications, to assist in the dissemination of results, and to represent the project and department and to attend and provide research training specific to the project.

For more information, please visit the University’s eRecruitment site

Contact persons:

Prof dr Sheila Payne – Tel +44 1524 593701 – Email: s.a.payne@lancaster.ac.uk

Dr Sarah Brearley – Tel + 44 1524 592574 – Email: sarah.brearley@lancaster.ac.uk

For further details click here

Book Review: The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End-of-Life Care – Lessons from the Netherlands

Frances Norwood’s book ‘The Maintenance of Life: Preventing Social Death through Euthanasia Talk and End- of-Life Care – Lessons from the Netherlands’ provides an in-depth look into end-of-life care in the Netherlands and how legal euthanasia has helped to shape this landscape.

The book draws on 15 months of qualitative data including direct observation and in-depth interviews with general practitioners, end-of-life patients and their family members.

Norwood argues that conversations concerning euthanasia rarely culminate in a euthanasia death. Furthermore, these discussions open up a more general discussion about end-of-life between patients, their families and healthcare professionals. They can provide a space for patients to talk about their suffering, reaffirming social bonds and self-identity, helping to prevent “social death.”

Norwood examines how the euthanasia policy in the Netherlands has shaped the experience of patients at the end-of-life and how this compares with the situation in the United States.

Reviewer – Erin VW Andrew

The European Network on Elderly Inter-cultural Care (ENIEC)

The European Network on Elderly Inter-cultural Care (ENIEC) is a Dutch – Danish initiative that has been going since 2007 but has only recently come to our attention.

The network is a non-profit membership association for ‘enthusiastic professionals engaged in care for elderly migrants in Europe’.

Their website states their aims as:

• to create an informal platform of exchanging ideas and experiences cross borders in today’s Europe
• to secure that European elderly with a foreign ethnic background can live in an environment of tolerance, intercultural understanding and respect for their needs and for their cultural background

You can follow the network’s activities via their website, facebook or twitter.