On 15 October 2014 Eurodiaconia participated in a conference entitled Palliative Care 2020, the final event for two EU funded research projects, impact and EUROIMPACT. EUROIMPACT trained researchers in the field of palliative care and impact looked at the implementation of quality indicators in palliative care. The projects jointly developed the 2014 European Declaration on Palliative Care, ten evidence-based policy recommendations which was the basis for the discussions. .
Numerous speakers talked of the need to build understanding among both the public and professionals about the scope and meaning of palliative care. It should not just be seen as care for the dying but about improving the well-being of persons with chronic diseases, which may last many years, and is not just relevant in a person’s final months. One participant talked about the success of a campaign in Ireland with the approach: say palliative care, think quality of life, whilst in the Czech Republic the interactive website http://www.thinkaboutdeath.org/ (a joint project of a hospice and a creative agency) seemed to be successful in reaching out to young people.
A number of interventions mentioned the fact that there is a lack of focus on research in palliative care, and that there is need for a broader evidence base to support different approaches. Other fields of medical research benefit from much higher resources but may affect fewer people than those that would benefit from palliative care. Eurodiaconia pointed out that there is a wider need to examine which models of integration of social and health care work when, and that integration must be addressed at all levels, from local level to the ministerial level. Further research can also provide more robust important economic justifications for investing in palliative care, to build on existing findings that palliative care often reduces the need for acute care and therefore is less expensive.
The European Commission presented ongoing work on producing guidelines on cancer care, which will include a section on palliative care. A few experts spoke about the importance of drawing expertise gained from cancer research and treatment into other sectors. The debate around whether it was better to focus on palliative care as a separate field or rather to ensure integration in other fields was not conclusive, but it was felt that it should be addressed again; does one approach have a bigger impact? In terms of outcome indicators it was stressed that attitudes of some professionals needed to change in favour of using them, but that they should also be useful to inform service provision. Quality indicators should also include measurements of spiritual care.
Participants agreed that palliative care should be integrated into medical educational curricula as well as on the job learning. In addition to knowledge and skills, one expert spoke of the importance of ensuring positive attitudes of staff towards palliative care. Building skills in risk management and complexity was also raised as a need. There is still the need to take a more user or patient-centred approach to care and develop personalised care plans, and do more advanced care planning anticipating future needs.