'Palliative Care is about Living' - PACE project challenges misconceptions
The members of AGE’s task force on dignified ageing were invited to take part in the PACE User Forum on 9 March to discuss the three following questions:
- How to integrate palliative care in the care continuum to enable better access
- How to better train health and social care professionals with regards to palliative care
- How to convey a holistic definition of palliative care to the public.
The PACE project coordinator, Lieve van den Block, from the VUB was invited to present the project and her understanding of what palliative care should mean today. During the discussions, AGE members realised the enormous potential of ensuring access to palliative care to older people on an equal basis, as soon as a life-threatening condition appears, to guarantee dignity and wellbeing. Indeed, according to the World Health Organization (WHO), “palliative care is an approach that improves the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual/existential problems”. As the PACE website states, “while palliative care was foremost offered to cancer patients in the past, it has been recognized that older people with age-related, chronic and mental health problems can also benefit from an early integration of a palliative care approach in the disease management”.
AGE members and staff, together with two representatives of Alzheimer Europe and Lieve Van den Block and Rose Miranda from the Free University of Brussels (VUB), were asked to discuss the above mentioned questions to support AGE and Alzheimer Europe in the drafting of the policy recommendations of the PACE project. Different actions and recommendations were suggested by our members to address the lack of access to qualitative palliative care for older people with life-threatening, progressive and chronic diseases. Here are some examples:
- Support and co-create public campaigns explaining what palliative care is, how it can benefit those in need of care. They should convey positive practices of palliative care for older persons in need of care, from a medical, psycho-social and spiritual point of view. These public campaigns would inform older people about rights to have access to qualitative and affordable palliative care;
- Health institutions should be given funding to invest in the implementation of qualitative palliative care;
- Educate care professionals on a continuous basis to the notions of qualitative palliative care, elder abuse, person-centred and integrated approach;
- Include palliative care in national health strategies;
- Create palliative care knowledge hubs to favour the exchange of good practices.
Many good ideas were discussed and will be used to draft the policy recommendations in the framework of the PACE project. However, one question kept us thinking: should palliative care necessarily be labelled as palliative care, when we know that any human being in need of care should have access to affordable, quality, person-centered care services? When good care is provided by well-trained care professionals, long-term care should include aspects such as medical care, but also psycho-social and spiritual needs included in the WHO definition of palliative care. Shouldn’t we start forgetting these different labels and start focussing on how to provide “care” to a person that needs it?