Promoting palliative care in the community: Production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care

Step 1. Identifying barriers to and opportunities for palliative care in the community

The authors S.A.M. and E.v.R. initially recruited a taskforce of experts drawing on established contacts with primary care colleagues from within the EAPC, the International Primary Palliative Care Network and via the Primary Palliative Care Research Group at the University of Edinburgh.^8,9 A survey instrument was produced and piloted following discussions of the taskforce team. The survey instrument sought to profile each country with respect to the development of palliative care in the community. We also sought outline data about the development of primary care services to contextualise palliative care development in the community. We also documented relevant developments in health policy related to this area, the vocabulary used, the perceived barriers and opportunities in each country in developing palliative care in the community and the actual practice of identifying patients in the community for palliative care. We specifically asked whether general practitioners (GPs) routinely kept a register of patients with palliative care needs and whether any care frameworks were used. Respondents were requested to respond using documented national data where available, such as national registers, or to estimate where this was unavailable. They were also asked to report any relevant research or review papers in PPC. A copy of the survey instrument is available from S.A.M. The survey was sent to a purposive sample of key informants with knowledge of palliative care services in a culturally diverse sample of European countries in 2012. These included 5 countries from Eastern Europe and 15 countries from Western Europe at different stages of palliative care development. The informants were invited via email contact from a list produced by taskforce members.

The results of this survey were analysed by S.A.M., L.S. and A.F. Barriers and facilitating factors relating to the provision of palliative care in primary care settings were investigated using, as an analytical framework, the four categories of policy, implementation, education and availability of medicines from the World Health Organization (WHO) Public Health Strategy for Palliative Care. ¹⁰ As the difficulty of identifying patients for palliative care was a constant theme from all countries, at the end of this stage, we embarked on an international systematic literature review to identify instruments that we might be able to recommend in the toolkit.

Step 2. Developing and refining the toolkit

A draft toolkit was then constructed, summarising the current barriers and opportunities and then suggesting various innovations and approaches which had been identified in the previous survey, again using the WHO framework as a useful public health way to overview such innovations. The toolkit was distributed electronically with an online questionnaire through the International Primary Palliative Care Network and also posted and publicised on the EAPC website with an online questionnaire. ¹¹ This resulted in 33 responses to the online survey exploring the applicability of the toolkit resource across countries. S.A.M. and A.F. then analysed these findings thematically and presented them, together with the results of the stage 1 survey, to 60 delegates at a workshop at the 13th World Congress of the EAPC in May 2013 who were mostly palliative care specialists, including doctors, nurses and allied health professionals. A similar presentation was made to 12 delegates at a World Family Doctors Caring for People Conference (WONCA) in June 2013, who were multidisciplinary primary care clinicians. After the initial presentation at each of these meetings, attendees were split into small groups to discuss possible improvements. Data from these discussions were then collated and analysed by S.A.M. and A.F. who further refined the draft toolkit to contain the most useful and relevant links to resource material that would make it work as a practical document internationally. Ethics permission was granted by the University of Edinburgh. Where applicable we have attempted to follow the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines in reporting the qualitative aspects of this study. ¹²

Step 1

Country profiles were received and collated for the 20 European countries as sampled above (see Figure 2). The detailed collated data from these individual country reports are in the full taskforce report which can be downloaded from the EAPC Taskforce homepage at http://www.eapcnet.eu/Themes/Organisation/Primarycare.aspx. Summary results are provided below.

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Figure 2.

Countries surveyed.

Development of PPC

In 2 of the 20 countries surveyed, GPs kept lists of patients with palliative care needs (Spain and United Kingdom): generally no systematic way of identifying patients was used. In 8 out of 20 countries, some frameworks of end-of-life care were advocated, for example, Gold Standards Framework in the United Kingdom. Despite the availability of simple and helpful tools, GPs still identified too few people for palliative care before they died. The range of palliative care patients estimated to have cancer ranged from 19% to 95%, with most estimating approximately 80%. Identifying and recording patients on a palliative care register did not necessarily lead to ‘end-of-life’ conversations. Advance care planning was rare, even in patients with cancer. Specialist advice was available in nearly all countries by telephone, out-patient referral and for some at the patient’s home or day centre. Countries tended to fall into three groups: limited, moderate or extensive generalist palliative care provision. A large number of national developments were documented, for example, National Standards in Albania and Armenia and National strategies in Luxembourg, Switzerland and Serbia. Various service developments in the community such as ‘GP Facilitators’ in the United Kingdom and a Public Health and Palliative Care Project in Catalonia were also listed. Many barriers and opportunities for palliative care in the community were elicited from different countries (see Table 1 and Taskforce website).

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Table 1.

Barriers and opportunities for primary palliative care according to WHO framework.

Barriers	Opportunities in some countries
Education: lack of knowledge and skills within primary care	Education: training opportunities available in some countries
Implementation: financial systems not permitting reimbursements for palliative care	Implementation: examples of established multidisciplinary primary care infrastructure and financial incentives
Policy and availability of medicines: problems with opiate prescribing	Policy and availability of medicines: national strategies supporting palliative care and access to medicines
Implementation: lack of professional or specialist support structure	Implementation: developing clinical networks and referral pathways
Education: poor identification of patients requiring palliative care	Policy and implementation: GP accessibility to all patients
Education: limited public understanding of palliative care	Policy: increasing political support and public advocacy campaigns

WHO: World Health Organization; GP: general practitioner.

Step 2. Development of a toolkit for the advocacy and development of PPC

A toolkit to give practical guidance and to signpost interested parties to documents and examples of practice was drafted and refined through the process above, and 105 individuals had input in refining the draft toolkit (see Appendix 1). After an initial statement about the potential of palliative care in the community, and a summary of typical barriers and themes in each country (see Table 1), this four-page hyperlinked document utilises the four domains of the WHO Public Health Strategy for Palliative Care to highlight examples of innovations and best practice in various European countries. ¹⁰

The resources identified by the previous country surveys were grouped and incorporated on the basis of their potential use in the diverse countries in which it is hoped that this toolkit will be used. It was restricted to a manageable four pages.

The final section of the toolkit suggests initial steps that might be taken depending on the stage of development of the country of interest:

Principal findings

We first profiled the provision of and barriers and opportunities for palliative care in the community in 20 European countries and conducted a literature review when we found it was necessary. Based on this information, we developed a resource toolkit and gained feedback on it from many individuals and at two international meetings. The four domains of the WHO Public Health Strategy provided a robust framework to use to collate the resources and to structure the toolkit. The toolkit usefully supplements previous work describing core competencies in palliative care for members of the specialist palliative care teams and can be used to respond to the call to develop more palliative care in the community. ²¹

Strengths and weaknesses of the study

The variety of methods employed allowed us to capture information from different sources and settings. The EAPC Atlas for Palliative Care in Europe 2013 offers details on specialist services. ²² The two workshops held at the EAPC Congress and WONCA Conference to refine the toolkit were well attended with the latter attracting delegates from South America, New Zealand and Africa as well as Europe. The toolkit was considered to have international relevance and had valuable input from specialists and generalists. Rather than conduct a complete mapping of this emerging field, we utilised our scarce resources to profile a range of European countries (around 50%), to understand their barriers and facilitators and to undertake an iterative process of toolkit development. This methodology did not allow the COREQ guidelines to be rigidly applied, and we would have missed some developments happening in unsurveyed countries.

What is already known and what this review adds?

The recent publication of the EAPC Atlas of Palliative Care highlights the lack of formal data available on PPC services across member nations, and this study provides both information and suggested actions. ²⁰ Toolkits of this type have been produced elsewhere with excellent examples from the African Palliative Care Association (APCA) ²³ who also have produced a variety of resources that different African countries are using to promote policy developments and services. Such tools have helped advocacy work in Uganda to overcome barriers to opiate prescribing. The APCA toolkit and also recent work from the Latin American Palliative Care Association have a wide focus in incorporating both primary and secondary services in their guidance. ²⁴

Implications for clinical practice and research

We have produced a toolkit highlighting some excellent innovative national strategies and developments that have been undertaken throughout Europe. The country profiles which we collected and the content of the EAPC Atlas also highlight the considerable work that is still to be done. All four domains of the WHO Public Health Strategy for Palliative Care are best developed simultaneously, and there is clear need for work to define the core competencies and service configurations required for the delivery of PPC. Increased recognition of the need for community-based palliative care services to be established alongside specialist provision is vital in order to ensure adequate population coverage if the vision set out in the Prague Charter is to be realised. ² Access to essential medications remains a challenge and must be tackled through national advocacy, education and support. A number of countries are already starting to use the toolkit, which has already been translated into French.