All Ireland Seminar on Palliative Care and Disabilities: Impact of legislation to improve quality of life and realise human rights
People with a disability at end of life may need support in making decisions in relation to their care planning. This can include people with dementia, intellectual disability, serious mental illness, neurological conditions or some forms of cancer. New laws are in place in the Republic of Ireland and Northern Ireland to ensure people have a right to support in making these decisions. It is now up to the health and social care services on the island of Ireland to make sure that people can access appropriate help in making decisions. To make sure that the services are right, there is a need for research to provide proof on what is the best way to provide this support to people with disabilities at end of life.
This timely All Ireland seminar, jointly funded by the HRB and HSC R&D, focussed on the challenges for people with life limiting disabilities, the impact and implementation of the new legislation in relation to decision making and what this means for health care researchers and professionals to support evidence-based practice.
The day provided valuable insights and perspectives from speakers and panel discussions with over 70 people attending from the island of Ireland including people with life limiting conditions, researchers, health care professionals, legal and advocacy professionals, service providers, policy makers, charity organisations, and interested citizens.
Some of the highlights from the day are summarised as follows:
- Challenges for people with life limiting disabilities
Kathy Ryan who has dementia and was representing the Alzheimer Society of Ireland’s Irish Dementia Working Group described the challenges she faces and the need for appropriate information in this area for people with dementia. Eithne Frost from Voices4Care spoke about the challenges for families and carers and their need to be understood, informed and supported. Professor Mary McCarron, Dean of the Faculty of Health Sciences and Chair of Ageing and Intellectual Disability at Trinity College Dublin presented the complexities in end of life care for people with an intellectual disability (ID) and advanced dementia. She highlighted the challenges for providing appropriate care in the community, with over 80% of people with ID developing dementia at 60/65 years; and their need to be able to access generic services.
- New legislation from clinical and legal perspective
Dr Gerry Lynch, Chair of Royal College of Psychiatrists Northern Ireland presented the main considerations from a clinical perspective on the new legislation in Northern Ireland. He also spoke about how they are currently developing the codes of practice and regulations in Northern Ireland to ensure implementation of the legislation by 2020. Dr Eilionoir Flynn, Director of the Centre for Disability Law and Policy and Senior Lecturer, School of Law National University of Ireland Galway presented the legal capacity legislation and human rights implications on the island of Ireland from the legal perspective. She spoke about the Mental Capacity Act (Northern Ireland) 2016 and the Assisted Decision Making (Capacity) Act 2015 (Republic of Ireland) and the implications of these laws in relation to a person’s human rights. Specifically respecting the person’s preferences and recognising the supports they may need to assist them in making decisions.
- Implementation of the legislation on the island of Ireland
From the Republic of Ireland’s perspective, Aine Flynn, Director of the Decision Support Service (DSS), Mental Health Commission presented on the current work of the DSS in implementing the new law and the implications for health and social care professionals. The DSS along with the Department of Health and the Department of Justice and Equality are working together to ensure that the service will be available to people with disabilities. Caoimhe Gleeson, National Program Lead- Assisted Decision Making, Health Service Executive (HSE) spoke about the challenges for health care professionals and multidisciplinary teams within the HSE and the practical implications of providing the services. The HSE is planning how people can access the service within the health service. From Northern Ireland’s perspective, Professor Gavin Davidson, Praxis Chair in Social Care, School of Social Sciences, Education and Social Work, Queen’s University Belfast talked about how the new legislation will impact practice, the need for consistency, understanding and involvement of people with life limiting conditions.
- Research supporting practice
Dr John Lombard, Lecturer in the School of Law, University of Limerick and Dr Martina O’Reilly, Head of Education, Research and Quality, Milford Care Centre presented a unique research collaboration to support practice, that involved final year law students in UL and health care professionals in Milford working together to identify some of the legal and practical implications of the legislation in a palliative care setting.
Deirdre Shanagher, Development Officer Irish Hospice Foundation and Dr Bernadette Rock, Policy and Research Manager, Alzheimer’s Society of Ireland provided valuable insights on the day during the panel discussions.
We would like to acknowledge Dr Suzanne Guerin, Vice-Chair of the AIIHPC Palliative Care Research Network; Deputy Director of the UCD Centre for Disability Studies and Associate Professor, School of Psychology, University College Dublin (UCD) for her role as Chair on the day.