Marie Louise O'Donnell (Independent) | Oireachtas source

I welcome the Minister and wish her luck in her new job. I know that she will do it well and articulately. I thank her for being here today and for taking this debate.

My report is an examination of end-of-life issues outside the health arena. My remit was to establish through 15 Departments and two State agencies policies, services and procedures around dying, death and bereavement and how they could be improved, enlarged or developed. My report is the first comprehensive analysis of end-of-life issues across all Departments. I learned an awful lot during the research. It did not come out of the ether and did not appear from the back of my head. In fact, I had always thought about dying, death and bereavement as something personal, private and associated with family. That is true but experts have taught me to think about them politically. This is the one life event that Government can plan for as it is inevitable that all citizens and residents of the State will eventually die. One hundred per cent of us will die and dying is 100% guaranteed. The cost to the State is estimated to be €1.4 billion so this needs thought, planning, services, human rights, respect, acknowledgement, policies, reviews, communication, clear information, supports, creative practices, newly unmet needs and a national conversation.

As the Minister has said, my report originated from a meeting of the Oireachtas Joint Committee on Health and Children that was chaired by the former Deputy and now Leader of the Seanad, Senator Jerry Buttimer. He chaired the meeting beautifully and he fuelled the idea of this report with meaning and value. Following the hearings I tabled a motion on end-of-life care and bereavement in the Seanad that was accepted by the Government. The Taoiseach at the time then invited me to review the end-of-life services provided by Departments and my report is the result.

I stand on the shoulders of giants this evening because nobody ever does anything on their own in politics. They may think they do but they do not. In the Visitors Gallery sit representatives of the Irish Hospice Foundation, McAuley Place in Naas, the Turning Point Institute, architects, the Alice Leahy Trust, Anam Cara, funeral directors, active retirement organisations, Sage, the National Safeguarding Committee, the Citizens Advice Bureau, Irish Rural Link, psychologists, philosophers, writers, psychometricians and the lead researcher, Ms Caroline Lynch.

Most of our knowledge, as politicians and Senators, is gained at committees. Great, informed, respected and objective people who work on the ground attend committees and tell us what we need to know. We become the conduit to change and alter things, and create legislation to protect, develop and make life better for the common good. That is where my report has come from.

The report has three elements. Part 1 features indepth research compiled by 15 Departments and two State agencies, namely, the OPW and the Revenue Commissioners. Part 2 contains 34 qualitative interviews from diverse disciplines that range from the arts, law, psychology, ethics, philosophy, specialist palliative care, sociology, social work, funeral services, industry, criminology, the coronial service and architecture. Part 3 contains a survey conducted on Deputies and Senators.

Dying, death and bereavement are very profound subjects. This is a very serious report on how we, as politicians, and a new Minister of the State can improve services and, therefore, the lives of people facing mortality. End-of-life services cost the health budget €1.4 billion a year. Eighty people die every day and 800 people are directly affected by their deaths. Does the State measure up when people face their most challenging time? I have tried to answer that question in my report. It is not accusative but challenging. What is the State’s role in dying, death and bereavement? Does it support, enable, encourage and recognise? In some ways it does but in some ways it does not. The State does not prioritise the issues. There is little account taken of the signals the State sends out to people who are approaching the end of their lives or those whose lives will be changed forever by the loss of a loved one. A glaring example of this was the abolition of the bereavement grant, as mentioned by the Minister. The bereavement grant was rebranded as exceptional needs. Removing the word "bereavement" from the State’s lexicon has had a social and psychological impact. Bereavement is an acknowledgement of loss and we, as citizens, have a right for that to be acknowledged. "Exceptional needs" is a label of poverty and people do not like it.

The Government rarely mentions death in its reports. Death is mentioned in Government statistics and where compensation is paid. The State counts us in and it counts us out. The State encourages us to plan for education, employment and retirement. However, it does not encourage us to plan for the end of life.