Ms Patricia Rickard-Clarke:

I thank the Chairman and members of the committee for inviting me to speak on behalf of the Forum on End of Life in Ireland. The forum represents the voice of people in Ireland on end-of-life issues surrounding dying, death and bereavement. It is an initiative of the Irish Hospice Foundation and was launched in 2009 by the then President, Mary McAleese, and is chaired by Mrs. Justice Catherine McGuinness. I propose to highlight several areas in which the forum is working in order to enable people to die well in Ireland.

One of the forum's key objectives, as contained in its work plan for 2013 to 2015, which was submitted to the committee, is to advocate for a national end-of-life strategy. Issues arising at end of life are wider than simply health care. Any of us who has had a loved one die knows only too well that there is a myriad of financial, legal, social, cultural and administrative issues related to a person's wishes other than those related directly to health care. For this reason, we need a comprehensive interdepartmental strategy which can address all areas of end of life and ensure the issue is effectively addressed by Government policy.

In short, we must recognise end of life as a natural part of the lifecyle. Government policy addresses the needs of the newborn, of school-going children and of people up to and post retirement age. So too should it address the needs of those at end of life. The forum's work plan addressed some of the issues that should be addressed by an end-of-life strategy, including, for instance, regulation of the funeral industry – one of this country's least regulated industries – and the importance of end-of-life proofing of buildings to enable more people to die well in their own homes and communities.

Another of the forum's objectives is to change policies and practices where this is required. Our systems must be flexible enough to take on board the needs of those at end of life and to change accordingly. Later today I will attend the forum's conference in Dublin Castle - an event that takes place every two years - where 300 members of the public and health professionals who are interested in doing things differently will discuss how we can make Ireland a good place to die. One example of a procedure that needs to be adapted is the forum’s recommendation that authority be extended to trained nurses and paramedics to pronounce death. This was raised during the public consultation the forum undertook in 2009 to 2010 as something that needed to happen, both from the perspective of bereaved families and in terms of making effective use of personnel in hospitals and emergency situations.

Advance care planning is another important issue. How many members of this committee have made an up-to-date will that reflects their current circumstances and wishes? If they are anything like the rest of the population, most of them will not have done so. How many members have thought about where they would like to be cared for at the end of their lives? Have they considered whether they would prefer to die at home and whether they would prefer cremation over burial, or vice versa? Have they told anyone close to them about these wishes or kept them to themselves? Many of us have made such decisions but without communicating them to another person. Talking about death in Ireland is the final taboo we have to face. People in many other countries make advance directives as a matter of course throughout their lifetime. We need to catch up in this regard.

The Think Ahead project - a major element of the forum's end-of-life work programme - is a public awareness initiative and broad advance planning tool designed to guide members of the public in discussing and recording their preference regarding end of life. It is important that we articulate what we want in preparation for a day where we may not be able to speak for ourselves. Not only is it our right to speak for ourselves; it is also our responsibility to spare our loved ones the burden of having to make decisions on our behalf, not knowing whether they are doing the right thing. The forum is initiating a culture change through Think Ahead which encourages people to think, talk and tell: think about what they would like; talk to their doctor or someone they trust; and tell someone close to them of their wishes in order to ensure they are carried out.

While advance directives are recognised in Irish law and are legally binding, there has as yet been no legislative framework to give clarity to the public and health care professionals. That is set to change. The Minister for Justice and Equality, Deputy Alan Shatter, stated in July 2013 that provision for advance directives will be included on Committee Stage of the Assisted Decision-Making (Capacity) Bill 2013. We hope this will help to ensure that people know their rights and can express their preferences.

Think Ahead was launched by An Taoiseach in 2011 and is currently being rolled out nationwide with the help of community groups and key players, including health professionals, solicitors, accountants and local politicians. The initiative is part of the move in Ireland towards meeting our international obligations under the Hague Convention on the International Protection of Adults of 2000, the 2006 United Nations Convention on the Rights of Persons with Disabilities, and the Council of Europe recommendation in 2009 regarding powers of attorney and advanced care directives. These international obligations require us to have systems in place to take account of individuals' will and preferences and ensure their respect and dignity are maintained in carrying out their wishes at the end of life.

We have an opportunity here to make real changes that will enable people to die well in Ireland. We must take that opportunity. I thank members for their time.