EAN guideline on palliative care

Optimising the care of people with severe MS is hindered by fragmented and varied care across Europe. The availability and involvement of palliative care services also vary between and within European countries. A guideline was devised by a task force appointed by the European Academy of Neurology in partnership with the European Association for Palliative Care (EAPC) and the European network for best practice and research in MS Rehabilitation (RIMS) [1].

From a literature search, expert survey, and direct engagement of MS patients and caregivers from seven European countries, 10 clinical questions were formulated about the following topics:

1. Symptomatic treatments;
2. Multidisciplinary rehabilitation;
3. Advanced care planning;
4. General palliative care;
5. Specialist palliative care;
6. Caregiver training and education;
7. Caregiver practical and emotional support;
8. MS healthcare professionals’ training/education in palliative care;
9. Palliative care healthcare professionals’ training/education in MS care; and
10. Discussion with healthcare professionals about the wish of hastening death.

Dr Alessandra Solari (Carlo Besta Neurological Institute, Italy) and co-authors found no studies related to only 4 of these 10 questions. Meta-analysis was possible for 1 question (symptom management) and individual participant data meta-analysis for 2 questions (general and specialist palliative care). Of ten publications on palliative care, three were randomised controlled studies and one qualitative study. Of these, two compared home-based specialist palliative care to usual care, and one compared home-based general palliative care to usual care [2].

Recommendations about palliative care and hastened death discussion were:

• People with severe MS should be offered home-based palliative care, either by healthcare professionals with good basic palliative care skills and knowledge (general palliative care) or a multi-professional team of palliative care specialists (specialist palliative care).
• People with severe MS should be offered in- or outpatient palliative care. Patient preference, conditions, and availability of palliative care services should be taken into account.
• MS patients should be encouraged to discuss their wishes about future care, including the restriction of treatment or interventions and the wish of hastened death.
• Healthcare professionals should be aware of the risk factors for the wish of hastened death, including depression, isolation, restricted abilities, and encourage the discussion of these issues and the appropriate management.

1. Köpke S, et al. Eur J Neurol. 2019;26:41-50.
2. Solari A, et al. ECTRIMS 2019, abstract 337.

Posted on 8 November 201922 March 2021