In response to the expressed desire from people with Chronic Obstructive Pulmonary Disease (COPD) to access information and engage in conversations about future planning, COPD Support Ireland and the Irish Hospice Foundation collaborated on a project that aimed to determine information gaps in relation to planning for the future with COPD and develop practical measures to fill this gap. Over an eighteen month period five facilitated workshops took place with 7 people with COPD and 3 family carers. Attendees explored, reflected and expressed their thoughts and feelings in relation to advance care planning which culminated in the development of the booklet “Planning for the future with COPD”.
This booklet was launched by Dr Marcus Butler Consultant in Respiratory Medicine, St Vincent’s University Hospital, Dublin in March this year.
Concurrently, and in an effort to address the recommendation for information with regard to palliative care for people with advancing neurological illnesses as outlined in the 2014 report “The Palliative Care Needs of People with Advancing Neurological Disease in Ireland” a working group was formed in 2016. This group comprised of people working in neurological illness organisations and a person with a neurological illness. A draft booklet was prepared by this group and a national consultation took place prior to completion. Orla Hardiman Professor of Neurology, Trinity College Dublin launched the booklet “Planning for the future Information for people who have an advancing neurological illness” during Brain Awareness week this year.
Both booklets host information about advance care planning to include making an advance healthcare directive, making a will and setting up an enduring power of attorney. In addition the booklets include practical information with regard to having conversations with family members’ friends and with health and social care professionals. The booklets are available to download here:
· Planning for the future: Information for people who have an advancing neurological illness http://bit.ly/2rMRbhC
· Planning for the future with COPD http://bit.ly/2k2ycLW
These booklets are timely resources that offer people information about making important decisions in the context of living with a long term life limiting illness. This is important as Ireland prepares for the full commencement of The Assisted Decision Making (Capacity) Act 2015 that promotes personal autonomy and upholds people’s rights to make decisions regardless of illness and/or disability.
For more information please contact: Deirdre.shanagher@hospicefoundation.ie.
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