The provision of palliative care for people with neurological illnesses has been increasingly recognised as one of the most important topics for healthcare research and policy. This was the theme of a one-day conference hosted by the Cicely Saunders Institute, in King’s College London. A range of talks were delivered by world leading experts in the area. Here, some of the key take-home messages for Irish healthcare workers are discussed.
A key theme throughout the day was that palliative care is applicable early in the disease trajectory for people with neurological illnesses – sometimes at, or soon after, diagnosis. Professor David Oliver outlined how early discussion of prognosis and palliative care issues can help to establish a trusting relationship between the healthcare team and the person with a neurological illness, and shows an openness for discussion. Early advanced care planning is also encouraged – especially if there is a possibility of impaired communication and/or cognitive impairment in the disease trajectory.
Dr Carolyn Young gave a very interesting presentation on her research in the role of hope in Multiple Sclerosis and Motor Neuron Disease. In her research she compared patients’ and clinicians’ indicators of quality of life, and found that patients emphasised psychological and social factors, yet these were often overlooked by clinicians who focused on physical symptoms. She found that patients with good coping skills were more ‘hopeful’, and reported better quality of life. The take-home message for healthcare workers was that they can facilitate hope by helping their patients to identify meaningful goals, to plan pathways to meet these goals, and to encourage positive attitudes by reminding them of times they have successfully achieved goals and overcome obstacles in the past. This approach is of course supplemented by good physical symptom management.
Dr Raymond Voltz said that it is not the system – but our minds – which inhibit palliative care for people with neurological illnesses. In Germany where he works, palliative care is still associated with cancer and with dying in the minds of many people. To combat these misperceptions, a national ‘palliative care telephone hotline’ for people with Multiple Sclerosis was set-up. The objectives of this hotline are to provide information about palliative care, to assess eligibility for palliative care, and to provide access to local palliative care services.
Pain was another important theme on the day; while pain is strongly associated with palliative care, it is not always seen as a primary issue for people with neurological illnesses. Dr Simone Veronese highlighted how prevalent pain is in neurological illnesses, with 40-86% of people with Parkinson’s disease, up to 88% of people with Multiple Systems Atrophy, 50-86% of people with Multiple Sclerosis, 60% of people with Progressive Supranuclear Palsy, and 40-73% of people with Motor Neuron Disease experiencing pain. Pain in neurological illnesses can be complex, for many illnesses the pathophysiology remains unclear, and pain may or may not be related to the underlying disorder. People can suffer from more than one ‘type’ of pain. For these reasons people with advanced neurological conditions can benefit from the expertise in pain management of specialist palliative care teams.
The consensus from these, and the other discussions on the day, was that we must continue to work to bridge the gap between palliative care and neurology. This is vital so that people with advancing neurological illnesses will benefit from improved care by their healthcare workers adopting a palliative care approach, or facilitating referral to specialist palliative care where this is needed.
At home in Ireland there has been recent attention given to the provision of palliative care to people with neurological illnesses. Dr Suzanne Timmons, consultant geriatrician, recently led a project in University College Cork exploring palliative care needs in people with Parkinson’s disease which was funded by the Irish Hospice Foundation.
As part of this, I conducted primary research with people with Parkinson’s, their families, and healthcare professionals, and the overwhelming consensus was that they could benefit from a palliative care approach, but that guidelines were needed to facilitate this approach and better access to specialist palliative care, where needed. Following a rigorous development process over two years, overseen by an international expert advisory group, Dr Timmons led the development of the first Irish guidelines for palliative care in Parkinson’s disease, which were launched to coincide with World Parkinson’s Awareness month in April.
The full ‘Palliative care in People with Parkinson’s disease’ guidelines can be downloaded from: https://www.ucc.ie/en/cgr/news/fullstory-638247-en.html
Siobhán would like to thank the Irish Hospice Foundation for their support in her attending this conference.