‘The People’s Charter on Dying, Death and Bereavement in Ireland’ is solidly based on results of the IHF ‘Have Your Say’ survey where almost 2,600 people across Ireland shared their personal views last September on what they feel is needed for a good death and in bereavement.
People want to live and die in an Ireland where death is talked about and not hidden away. People want to prepare for what lies ahead and get relief from pain, no matter the location or condition. People who are bereaved want space and time to grieve, talk and remember. These are samples of insightful and heartfelt survey findings.
Speaking from Dublin Castle on Tuesday, IHF CEO Sharon Foley said: “This important charter was formed by public opinion and gives us a powerful tool to bring to Government. The charter received overwhelming support today from 350 delegates. The people of Ireland want to have their say about end of life. Being treated with and maintaining dignity matters to people. Many described their fear of pain, with access to adequate pain relief being vital. Care, dignity, comfort and pain were recurring words used by people.
We will continue to feed and nurture this charter so it grows and is responsive to what people want. More people had their say today and we will continue to lead the discussion.”
Mrs Justice Catherine McGuinness is Chair of the National Council of the Forum on End of Life in Ireland and spoke passionately at the forum to over 350 delegates.
“As citizens and as a society we need to break the taboo that surrounds death. We need to assert clearly that when it comes to end-of-life we need more rights than the last rites. We need to support each other to develop a greater sense of personal responsibility and put effective systems in place to enable people to act responsibly.
Talking about death is a useful first step. Forum enables that conversation engaging in individual and collective futures.”
Keynote speaker was Professor Jenny Kitzinger from Cardiff University who co-directs the ‘Coma and Disorders of Consciousness Research Centre’. Jenny spoke about challenges around how decisions are made when the patient has lost the ability to make choices for themselves. Jenny was speaking about her own research for the Welsh Government – and also speaking from the heart about her own personal experience with sister Polly Kitzinger.
“There is a huge taboo, fear and superstition in talking about death and dying but unless we do talk about it, we risk leaving our family vulnerable to maltreatment. It’s estimated that one in three of us will face end of life unable to make decisions, this could be a car crash in your 20’s with devastating consequences or extreme dementia in your 80’s.
People should have the right to the best support and care possible at end of life. Many people may lose their capacity and ability to make their own decisions which is why we should think about it, talk about it and tell people about our choices and consider writing an advance care directive too,” concluded Professor Kitzinger.
Forum 2017 is the 5th biennial National Conference of the Forum on End of Life in Ireland. The Forum has been kindly supported by UPS Ireland and its employees.