C65 Palliative care and healthcare utilization at the end of life in people with ALS



Session 6B Palliative Care

Luc Deliens1,2,3, A. Maetens1,2,3, K. Beernaert1,2,3, J. Cohen1,2,3
1Ghent University, Ghent, Belgium, 2Free University of Brussels (VUB), Brussels, Belgium, 3End-of-Life Care Research Group, Ghent and Brussels, Belgium

Background: People with ALS in an advanced stage and near the end of their life have very high symptom burden and are in need of several health services, including palliative care. Palliative care is the approach that improves the quality of life of both patients and their family carers facing the problem associated with serious illness, through the prevention and relief of suffering by means of early assessment of needs and timely treatment of pain and other problems, physical, psychological, social or existential. It is recommended that symptom management and palliative care start immediately or soon after diagnosis. Hence, palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications. In some cases of ALS existential suffering becomes unbearable and in these cases euthanasia might be the only right last resort option when requested explicitly by a competent patient and properly assessed by the health care providers. However, little is known about healthcare utilization, including euthanasia or voluntary assisted dying, at the end of life in ALS patients. In Belgium, where euthanasia or voluntary assisted dying has been legalised, people with ALS have also access to euthanasia and the incidence of euthanasia is among the highest of all patient groups. In this plenary presentation, we will address these issues by reporting on large scale epidemiological data from Belgium, partly based on administrative linked databases of health claim data, cause of death data, and reported euthanasia cases data. Administrative data provide a valuable source to describe healthcare utilization in small populations such as ALS, but more clinical evidence is needed on the advantages and disadvantages initiating or terminating treatments at the end of life.


Source: Abstract Book symposium Perth