“Palliative care is about death and it is delivered only in hospitals in the last days of life”.“Receiving palliative care means that cure is impossible, and that the person will die irremediably within a few days.”
Although these statements are widespread in society, they are wrong! Palliative care is, first of all, about living: palliative care addresses pain, psycho-social, spiritual and existential issues of those with a life-threatening condition to improve their quality of life and ensure their dignity. Access to palliative care should not depend on age, nor should it depend on the disease: policymakers and those planning health and social care services have the duty to enable access to all those who can benefit from palliative care to improve their quality of life.
The end of the PACE project
This was the guiding principle of the EU-funded PACE project on improving access to holistic palliative care in long-term care facilities for older people, which came to an end on 31st January 2019. The final workshop in Brussels on 24 January 2019 brought together a variety of stakeholders – professional associations, academics, advocacy organisations, policymakers, AGE members – who learnt about the outcomes of the project and discussed how to use them to advance access to palliative care in their respective work field.
The workshop, attended by 35 participants, included presentations from project coordinators, Luc Deliens and Lieve Van den Block (VUB) on the general philosophy of PACE and the PACE Steps to Success Programme that implemented successfully palliative care in care and nursing homes in 6 EU countries. Katherine Froggatt from the Lancaster University presented the White Paper of the European Association of Palliative Care, which provides recommendations on the implementation of palliative care in care facilities.
The PACE Policy Recommendations
AGE presented the PACE Policy Recommendations, which were drafted together with Alzheimer Europe through a process of consultations with our respective members over the past years. These included two meetings of AGE’s task force on Dignified Ageing (in 2015 and in 2018) and a policy conference (15 June 2016).
The recommendations make the case for a better access to palliative care for older people. They provide policy orientations that are specific to long-term care facilities, to older people living with dementia in such facilities, as well as more general recommendations, including notably the need to raise awareness and fight stigma.
The way forward
The workshop included group discussions on how to use PACE outcomes and how to advance access to palliative care for older people at all levels (policymaking, advocacy, service delivery and management). Participants shared a great interest for the topic and several highlighted how PACE increases their literacy in the matter and their interest to work further on it. AGE explained how the partnerships created within the project and its outcomes will be instrumental in advocating for palliative care; opportunities in the short term include the next session of the UN Open-Ended Working Group on ageing, which will discuss normative elements around palliative care, and the implementation of the principle on long-term care of the European Pillar of Social Rights. AGE will aim to include palliative care among the essential pieces that constitute the access to comprehensive, person-centered care and support for older people.