by David Oliver
In the January issue of the European Journal of Neurology, a Consensus review on the development of palliative care for patients with chronic and progressive neurological disease is published and we highlight this important article by offering you a short introduction written by the corresponding author, Dr David Oliver.
How we care for people with progressive disease and cope with their concerns and symptoms is an essential part of all medical care. Within neurology many patients’ groups have disease that cannot be cured, may have treatments that, at best, only slow progression and for which palliative care would be appropriate. This paper aims to present the evidence for the palliative and end of life care of these patients.
Although initially it had been hope to produce a Guideline on palliative care the evidence was found to be very limited and so a Taskforce of representatives from the EAN (initially the EFNS) and the European Association for Palliative Care have agreed this Consensus document.
The main areas considered, and for which consensus was agreed and recommendations made are:
- the early integration of palliative care (level C)
- involvement of the wider multidisciplinary team (level B)
- communication with patients and families including advance care planning (level C),
- symptom management (level B)
- end of life care (level C)
- carer support and training (level C)
- education for all professionals involved in the care of these patients and families (Good Practice Point).
This paper, we hope, will be a start for further discussion about the role of palliative care within neurology and help to develop the care many patients, and their families, need as their disease progresses and they come towards the end of their lives.
How to use this paper
This consensus provides evidence for the development of palliative care for people with chronic and progressive neurological disease. There are clear recommendations for all involved in neurology that would help to improve the quality of life of patients and help patients, families and professional teams as they face the progression of neurological disease.
An example of the use of this paper would be:
A 56-year-old man with progressive amyotrophic lateral sclerosis comes to an out-patient clinic. The diagnosis was made 2 years before and he has now developed increased speech and swallowing problems. He has orthopnoea and gets frightened at night as he wakes regularly and is often breathless. His wife is sitting with him, and looks very concerned.
This is an opportunity to involve the wider multidisciplinary team and look at the future assessment and management of his symptoms. This may include consideration of a gastrostomy and non-invasive ventilation but involving palliative care services may be helpful, to facilitate communication and discussion about the future, allow expression of his, and his family’s fears, and allowing them to look ahead, including advance care planning. In these ways his quality of life may be maximised and he, and his family, can feel supported.
Patient / caregiver summary
Palliative care aims to improve the quality of life for people, and their family, whose disease may be chronic and progressive, with no cure. Within neurology palliative care is appropriate for many diseases – multiple sclerosis, amyotrophic lateral sclerosis, Parkinson’s disease, multiple systems atrophy, progressive supranuclear palsy and Huntington’s disease. This paper has been produced by specialist both in neurology and palliative care and aims to show the best evidence for the care people with progressive neurological disease.
The main recommendations are for the early involvement of palliative care, multidisciplinary team care, improved communication, the careful assessment and management of symptoms, improved care at the end of life, support for carers and increased education of all professionals in the principles and skills of palliative care.
Dr David Oliver
Consultant in Palliative Medicine
Wisdom Hospice, Rochester, UK
Honorary Reader, University of Kent