Ageing

5. End of life

5.1. Definition and the European Consensus Norm

“Palliative care is the active, total care of people whose disease is not responsive to curative treatment. Management of pain, of other symptoms and of social, psychological and spiritual problems is paramount. Palliative care is interdisciplinary in its approach and encompasses the patient, the family and the community in its scope. In a sense, palliative care is to offer the most basic concept of care – that of providing for the needs of the patient wherever he or she is cared for, either at home or in the hospital. Palliative care affirms life and regards dying as a normal process; it neither hastens nor postpones death. It sets out to preserve the best possible quality of life until death.”(3)

The White Paper 'Consensus Norms for Palliative Care of people with Intellectual Disabilities in Europe' was made by the European Association of Palliative Care (EAPC) Task Force on ID. The Task Force consisted of well-known experts in the field, in order to produce consensus norms for best practice that would be applicable and acceptable across Europe. 

The availability of palliative care services in ID varies between different European countries. This is why it is not appropriate, or even possible to set Europe-wide standards for the palliative care of people with ID.

Across Europe, there are many commonly used terms to denote palliative care. These include ‘hospice care’, ‘end of life care’, ‘comfort care’ and ‘supportive care’. In the UK (and, more widely, in North America) the term ‘end-of life-care’ has been used synonymously with palliative care (1:19).

In the EAPCs White Paper you also find several examples of good care in the end of life, collected from different countries in Europe.

ACTIVITIES: 

• Reflect on what view you may have on death and dying.
• Do you believe that your view on death and dying impact your child’s/sibling’s/client’s view on death and dying? Do you believe this is positive or negative?
• What do you know about your child’s/sibling’s/client’s thoughts about grief and death?