Palliative Care in MND Barry Laird Clinician Scientist in Palliative Medicine, University of Edinburgh and PRC Consultant in Palliative Medicine, St Columba’s Hospice & The Edinburgh Cancer Centre & IGMM St Columba’s Hospice

Common myths about palliative care Palliative care is often misunderstood and some people believe things about it that aren’t true. MYTH: If I need palliative care it means I’ll have to go to a hospice You can receive palliative care in a range of settings including in your home, in hospital, in a care home or a hospice. MYTH: If I have palliative care it means my doctors have given up and I’ll no longer receive active treatment for my illness You can receive palliative care alongside active treatments for your illness, such as chemotherapy and radiotherapy. MYTH: If I have palliative care I’ll no longer be seen by other specialists who know about my particular illness You can receive palliative care support alongside care from the specialists who have been treating your particular illness. MYTH: Palliative care is just about treating pain and other physical symptoms Palliative care aims to provide a holistic approach to give you the best quality of life possible. This means caring for all your physical, emotional, psychological, social and other needs. MYTH: Only people who are ill can benefit from palliative care Palliative care teams are very aware that caring for someone with an advanced illness can have a big impact on family members and friends. Palliative care teams do what they can to help people cope. MYTH: If I need palliative care it means I’ll have to go to a hospice You can receive palliative care in a range of settings including in your home, in hospital, in a care home or a hospice. MYTH: If I have palliative care it means my doctors have given up and I’ll no longer receive active treatment for my illness You can receive palliative care alongside active treatments for your illness, such as chemotherapy and radiotherapy. MYTH: If I have palliative care I’ll no longer be seen by other specialists who know about my particular illness You can receive palliative care support alongside care from the specialists who have been treating your particular illness. MYTH: Palliative care is just about treating pain and other physical symptoms Palliative care aims to provide a holistic approach to give you the best quality of life possible. This means caring for all your physical, emotional, psychological, social and other needs. MYTH: Only people who are ill can benefit from palliative care Palliative care teams are very aware that caring for someone with an advanced illness can have a big impact on family members and friends. Palliative care teams do what they can to help people cope.

“combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden” Do we/ should we/ can we/ how do we…. apply the same paradigm to MND?

PC in MND NICE recommend EARLY referral to Specialist Palliative Care Team Optimal model unknown Should we use prognosis…prognosis challenging Phase II trial of PC in progressive neurological disorders (Oliver et al) Encouraging findings need examined in a larger cohort.

Weight loss in MND: cancer paradigm Malnutrition versus hypercatabolism Mechanisms of weight loss in MND

Disease progression Palliative Care End of life Care Optimising condition e.g. Nutrition

Appropriate Nutritional Intervention Optimum time Combined with neurological care

Hospice: a home providing care for the sick or terminally ill Palliative care: care for the terminally ill and their families, especially that provided by an organized health service

Temel et al, N Engl J Med 2010; 363:733-742

OLD NAME: Palliative Care ROLE: care for the terminally ill and their families NEW NAME: Supportive Care ROLE: care for the patients with life limiting illness and their families AND to optimise patients wellbeing to facilitate the delivery of therapy

barry.laird@ed.ac.uk