Professor David Oliver
University of Kent
Palliative care in MND
Dr David Oliver has recently retired from the full-time position as Consultant Physician in Palliative Medicine at the Wisdom Hospice in Rochester, Kent and is an Honorary Professor at the Tizard Centre at the University of Kent.
He has lectured and published widely on neurological palliative care, particularly on the care of people with motor neurone disease. He was Clinical Lead for the National End of Life Care Programme document End of Life Care in Long Term Neurological Conditions – a framework for implementation. He was the Chair for the UK National Institute for Health and Care Excellence Guidelines on MND, released in February 2016.
He has been involved in many projects across Europe is chair of the EAPC Taskforce on Neurology and Palliative Care and Co-Chair of the Palliative Care Specialty Group of the European Academy of Neurology. He is Chair of Research Group on Palliative Care of the World Federation of Neurology. He is a Fellow of the European Academy of Neurology.
He has written widely on the palliative care and symptom control of patients neurological disease, including “Motor Neurone Disease – a family affair” and as principal editor of “Palliative Care of Amyotrophic Lateral Sclerosis – from diagnosis to bereavement” with a third edition published in 2014. He also edited “End of life care in neurological disease”, published in 2013 and was first author of the paper “A consensus review on the development of palliative care for patients with chronic and progressive neurological disease” (Eur J Neurol 2016).
The role of palliative care for MND
Palliative care aims to provide a holistic approach to the patient and their family / carers, considering all aspects of care – physical, psychological, social and spiritual. All clinicians provide palliative care: ensuring good communication, shared decision making / goal setting and symptom management. Those caring for people with progressive and life-threatening disease require further training and should be working within a wider multidisciplinary team. For the more complex issues – physical, psychosocial or spiritual – specialist services may be needed.
Within the guidelines on the care of people with progressive neurological disease, and in particular MND, the role of palliative care has been emphasised. Discussion and assessment of the whole patient is essential and the multidisciplinary team approach has been suggested not only to improve quality of life but length of survival. Palliative care has a role from diagnosis, as patients face increasing issues as the disease progresses. The discussion of end of life care should take place from diagnosis, if the patient wishes, and throughout the disease progression, especially when new interventions, such as gastrostomy or ventilatory support, suggested. This may include advance care planning, so that the views of the patient are clear, even if there is loss of communication or cognition as the disease progresses.
Increasingly palliative care is provided throughout the disease progression of MND, depending on the needs of the patient and family. In this way the quality of life can be maintained and patients and families can be supported through disease progression and have an improved quality of life and quality of death.