Death is something we will all experience, when our loved ones die, and when we come to the end of our own lives. Some people live with life limiting conditions for some time; others die suddenly or with little warning.
As individuals we want our experience of dying to be peaceful and dignified. As family members and friends, we want to know that our loved ones were pain-free and comfortable and that we can grieve in privacy at the time of death, and with the supports we need afterwards.
Talking about death is not easy. It is clear however that as individuals and society we need to have a frank and honest conversation about it. We need to create for ourselves the best chance of having a good death and allowing those who remain behind to experience a healthy grieving process.
Many public bodies and voluntary groups have responsibility and interest in this area. These include the Health Service Executive, the Health Information and Quality Authority, the Irish Hospice Foundation, the Forum on End of Life and the many organisations representing professional and patient interests.
The Irish Hospice Foundation and the Forum on End of Life are working to promote openness about the issues of where we die, how we die and how we should plan for it. They have highlighted the need to talk, plan and act in order to ensure a dignified death for as many people as possible and a peaceful life for those who are bereaved.
Our legislators recognise this. The Oireachtas Committee on Health and Children spent a significant period of time in October and November 2013 listening to the views of experts and interest groups on the challenges posed by this ‘ taboo’ subject, so that they could familiarise themselves with the problems and possible solutions.
The Ombudsman too can play a role in the national debate and exploration about death. Despite the personal trauma involved, the experiences of most patients and their relations in care settings reflect a service which is caring, professional and dignified. However, over the years, the Office continues to receive many complaints relating to end of life events. The numbers may be low, but the experiences are unique and in many instances, had a profoundly disturbing effect on family members. We decided to reflect on some of the complaints we received in recent years and to draw from them common themes that may assist service providers and policy makers to improve practice. Some of the stories shared here are sad and reflect the intense emotion of those directly involved. However in order to improve the experiences of people in the future we need to tell their stories and learn from our mistakes.
We hope these reflections will make a positive contribution to the national debate on end of life care and the campaign to make Ireland a good place to live in and to die in. If there is one message to be learned from complaints brought to us, it is that small things make a big difference. Those moments at the end of a loved one’s life are extremely precious and will be re-lived again and again. Excellent communication and a positive, respectful attitude are required from all people associated with the care of the dying person and their loved ones. I hope that the stories related here will remind us to keep this in mind at all times.
Peter Tyndall
Ombudsman
2014