Marie Louise O'Donnell (Independent) | Oireachtas source

I move:

That Seanad Éireann –- conscious that almost 29,000 people die each year in Ireland and 290,000 people are newly bereaved;
- aware that contributors to the recent hearings on palliative, end-of-life and bereavement care at the Oireachtas Joint Committee on Health and Children identified that end-of-life issues are wider than health care;calls on the Government to put in place a review to explore the components of an overarching strategy on end of life and bereavement, which would have regard to the wider societal issues arising, including legal, financial, economic, educational and cultural aspects.

Between October and November 2013, an unprecedented series of meetings took place in the Oireachtas health committee, ably steered by the Chairman, Deputy Jerry Buttimer. The committee brought together an extraordinary group of people to discuss an issue which has, without exception, the most profound implications for everyone - namely, palliative care, end-of-life care and bereavement. It was a privilege and an education to hear practitioners, clinical and non-clinical, specialist and generalist medical personnel, as well as legal, governmental and non-governmental experts speak about their work with and for people and their families who are facing death and loss. We heard about how 29,000 people die every year in Ireland and 290,000 people are newly bereaved, as well as the philosophy, psychology, cultural and educational aspects of dying, death and bereavement. The depth and breadth of their knowledge gave a new insight into the universal truth a dying man once told me, “You cannot get off this planet alive.”
I attended the hearings, which made me look again at how and when people die, as well as the way we acknowledge death. I do not intend to rehearse all of the information and argument given to the Oireachtas health committee but I will share a few salient points with my colleagues who were not able to be present at the hearings.
It is estimated that we spend €1.3 billion each year on end-of-life care, most of which is unplanned. I learned that we can die at any age, from the end of a long life to the prime of life or when life is just beginning. We die at all times from the small hours of the morning to the middle of the night, although less often between 9 and 5 on Monday to Friday. We die in all circumstances - in hospital, in long-stay care, at home or in hospice care.
While we Irish believe we are good at death, we have very different understandings, practices and protocols about dying, death and bereavement. Some are good while others are not so good. When they are not good, the people mainly affected are those who are dying and those who love and care for them. In end-of-life care we have one chance to get it right, and there are so many people inside and outside the health services working to get it right. I learned that there is great support for all of the excellent palliative care, end-of-life care and bereavement practices and initiatives within the health services and in hospices, hospitals and the community.
It would make sense to bring together all of these developments to augment and reinforce them. A strategic approach would, at the very least, ensure we spent our €1.3 billion in a more planned and focused way. It might ensure that the one chance to get it right is successful more and more often. I have great faith that following the compelling information shared with my colleagues in the health committee, they will recommend such a strategic approach to the Minister. This is a time of great challenge and great change in the health services. Perhaps it is also a time of great opportunity for our new hospital trusts and others. Dying, death and bereavement, however, cannot be neatly packaged and handed over to the palliative care services or the health service generally as their exclusive remit and responsibility.
Dying, death and bereavement affect us all, and they are our responsibility as citizens and as human beings. It has been said that dying, death and loss are often marginalised into sub-specialities and external locations, all of which give an implied message that death is someone else’s business. Professor Eamon O’Shea of NUI Galway told the Oireachtas committee that if our approach to dying is to be truly holistic, it must broadly move beyond the clinical, medical and caring areas into an understanding of what is needed around death. Dying, death and bereavement affect us all. They are our responsibility as citizens and as human beings, as mothers and fathers, sons and daughters, grandparents, brothers and sisters, nieces and nephews, aunts and uncles, employers and employees, law-makers and law enforcers, public servants and private citizens, teachers and pupils, colleagues and friends. It is our responsibility because we interact in all of those roles, personally and professionally, with our fellow human beings facing or dealing with dying, death and bereavement.
How is this responsibility ours, and, by extension, part of the State’s responsibility? The State interacts with the dying, the dead and the bereaved. For example, with the registration of births, deaths and marriages, the State counts us in and counts us out. When it really counts, does the State perform well? Does it help those public servants registering deaths to interact sensitively and sensibly with the people facing the collection of the inevitable bureaucratic full stop, namely the death certificate of a loved one? How does the State equip the garda who has to knock on the door at three o’clock in the morning to deliver the news that no family wants to hear? How does the State support the teacher with a class of adolescents who have just lost one of their number to suicide or the seven year old who has lost a parent or sibling? How does the employer cope with terminal illness, death and bereavement in the workforce and how do we as work colleagues support each other? Do we really want to continue with unregulated crematoria and an unregulated funeral industry?
The State, and we as governors of the State, is prone to inconsistencies. We are doing some things very well and others not so well. Two examples will suffice to illustrate this. On the plus side, the Government is about to enable true patient autonomy through the enactment of legislation to allow for advance health care directives. On the minus side, in the last budget, the decision was made to abolish the modest bereavement grant.

What a negative message and disproportionate burden that is on older people and their psychological security and peace of mind concerning funeral arrangements.
In other areas citizens have taken brilliant initiatives such as the Compassionate Communities project at Milford Care Centre in Limerick which seeks to work in partnership with individuals, groups and communities facing loss and those experiencing bereavement. The grief-at-work resources were developed in partnership with the Irish Hospice Foundation, the Irish Business and Employers Confederation, IBEC, the Irish Congress of Trade Unions, ICTU, the Small Firms Association, SFA, the Department of Jobs, Enterprise and Employment and others to help workers to support employees. In 2011 the Taoiseach launched the Forum on End of Life's think ahead initiative, a citizen-led planning tool that encourages and provides a way for people to think about and pre-record their wishes in the event of a serious illness. It highlights the importance of planning ahead to ensure an individual's right to make decisions for himself or herself is honoured.
The State must learn from these initiatives and catch up with community-led creative solutions. We need the panoply of State services to help us to think, talk and tell about dying, death and loss and enable us to support each other. We need to examine what we do and do not do brilliantly, pull all these strands together in a coherent whole and weave all the separate threads of good practice and support into a tapestry of our common humanity. I urge the Government, through the Minister and the Cabinet, to accept this proposal that it establish an advisory or working group to build on the initial work done by the Oireachtas committee. The group should be charged with the task of identifying all the components of a comprehensive end-of-life strategy and the actions required to ensure a better end of life. It should develop a strategic framework which identifies short-term minimal resources, highest priorities and medium-term and long-term outcomes, creating a blueprint for action to ensure people can live well at the end of their lives and that their families are supported in their bereavement. The group should be led by the Department of the Taoiseach to ensure a wide perspective and supported by a strong secretariat. It should be cross-departmental and comprise representatives of all Departments, including the Departments of Health; the Environment, Community and Local Government; Social Protection; Justice and Equality; Education and Skills; Finance; and Public Expenditure and Reform. It should invite oral and written submissions from interested parties and facilitate meeting people where they are, namely, in their homes and communities. It should seek the views of people living in the community. It should reflect on the findings and recommendations of the Oireachtas Joint Committee on Health and Children which concentrated on the health aspects of end-of-life care. It is not an Insurmountable task or ask but an essential undertaking.
Dr. Paul D’Alton addressed the Oireachtas committee thus:

Death remains the biggest threat as well as the greatest challenge to humanity. It is the single universal event that affects all of us in more ways than we care to know. There is a growing amount of literature that points to the fact that death is not a discrete event; rather, we die as we live ... In this way dying well does not simply involve the last days or weeks of life; rather, it is the product of attitudes and values that we hold as citizens and governors of the State. These attitudes and values underpin how we prioritise and organise our services, how we interact on a personal level, and fundamentally how our society responds to the issue of death and dying.

I commend the motion to the House and echo the words of the Taoiseach, in whom I believe, when he launched the think ahead initiative:

The think ahead initiative helps prevent shock, helps avoid confusion ... by encouraging us to think, talk and tell. It takes the attention, the intention and the desire of the way we live and applies them equally and exquisitely to our death and dying, so we have some control, choice, peace, dignity at the end.