Neuropalliation and the End of Life: The Clinical, Ethical, Legal and Pastoral issues relevant to excellent care

Event Notes:

Neuropalliative Care seeks to embrace all the principles and practices of primary and specialty palliative care, applying them to the specific needs of patients with neurologic illness and their families. Neuropalliative care thus represents both an emerging subspecialty within neurology and palliative care, as well as a holistic approach to people suffering from neurologic illnesses (Creutzfeldt 2018).

This Conference seeks to emphasise the essential elements of developing good communication skills and styles, accurate but compassionate prognostication, as well as awareness of the legal and ethical considerations. This extends to the neuropalliative care in prolonged disorders of consciousness. Primary palliative care is provided by all clinicians who care for patients with serious illness, regardless of speciality or subspecialty.

Given the nature of some neurological diseases, this focuses on improving their quality of life through symptom control, both physical and psychological, rather than just on the diagnosis and treatment of their underlying disease. It will, at some stage evolve into the supportive care needed at the very end of life, a founding principle of the Hospice movement. Palliative care is not synonymous with hospice care, a common myth in the minds of the lay public and many healthcare professionals. Palliative care could therefore start before birth, be associated with a normal life expectancy, and only end beyond the death of that person.

The Royal Hospital for Neuro-disability hopes to provide a focus on this rapidly expanding field as well as serve as a national leader and resource for professionals, commissioners and families. This conference will bring together national leaders and recognised experts in this field:

• Dr Idris Baker, Consultant in Palliative Medicine, Swansea. National Clinical Lead for Palliative and End of Life Care, Wales
• Dr Andrew Hanrahan, Consultant Physician in Neuro-rehabilitation and Clinical Lead in Neuropalliation, Royal Hospital for Neuro-disability
• Dr Amy Kingston, Consultant in Palliative Medicine, Royal Trinity Hospice, London and Royal Hospital for Neuro-disability
• Rachael Marsden, MND Nurse Consultant and Care Co-Ordinator, Oxford MND Centre
• Dr Trevor Stammers, Associate Professor of Bioethics and Medical Law and Director of the Centre for Bioethics and Emerging Technologies (CBET)