Ms Kate Bree:

I am honoured on behalf of the network of Hospice Friendly Hospitals to address the committee this morning. I propose to explain what we are doing, what we can do better and what needs to happen for our dying patients and their families in our hospitals. I am one of the senior nurse managers in charge of the hospital and work weekends in this capacity. My experience to date is that patients do not always die between 9 a.m. and 5 p.m., Monday to Friday, when all services are in place. Often one is faced with very profound experiences involving patients and families outside these times. I was involved with a family whose adult child had died tragically. On receiving the news, I contacted the hospital Chaplain and we discussed where would be the best place to take the family. Their adult child had not died in hospital so we would not be involving a ward area but we needed an appropriate space. In difficult sensitive situations like this, one acts quickly and makes decisions. Time is of the essence. We were very conscious of where we would take the family because additional news of a distressing nature needed to broken. We agreed a space - a small office area - and met the family when they arrived at the main entrance. We offered our condolences, made tea and were present with the family while tragic news was broken. It was difficult in this small room for them to move around to comfort each other. Later, when they were able, we brought them to the Mortuary to see and spend time with their child. Our viewing area in the Mortuary for families is far from ideal and is outside the main building. The Chaplain, hospital porter and I tried to make it as tolerable and presentable as possible. We brought back the family to the room and stayed until they were ready to face their difficult journey home.

At times like this one becomes totally absorbed and anxious for the family because one really wants to do the right thing for them in their distress. This experience affected us and had a profound effect on me. I wanted to share this with the committee this morning as it captures some of the challenges we face on the ground in providing good end-of-life care in our hospitals. Good end-of-life care is everyone's business, the nurse, the chaplain, the porter. We get only one chance to get it right. What I have described indicates the importance of staff having the necessary skills in communication and awareness around end-of-life care to ensure all patients and families are treated with dignity, respect and sensitivity. We must have appropriate spaces within in our hospitals that afford privacy when breaking bad news to the patient and their family. We need to ensure our viewing areas in our mortuaries are improved.

As a result of the programme, some of this work has started and is progressing. The programme invites hospitals to embrace their role in supporting all patients at end-of-life, regardless of diagnosis, whether their death is expected or sudden. It acknowledges that end-of-life care is a core activity in our hospitals. Almost half of us in this room today will die in a busy acute hospital and almost half will die in a busy ward area as opposed to in the privacy of a single room. Almost half of us will not be involved in discussions regarding our care. Staff find it easier to talk to relatives than to the patient. We know this is based on the results of the national audit on end-of-life care which suggests there is substantial variation in the quality of care offered to patients and relatives at the end-of-life. The audit concluded that there are 17 ways to improve dying in hospitals, one of which is to ensure the patient is cared for in a single room. We are short of such spaces and have competing priorities such as income generation and infection issues.

How would one know if a hospital is a hospice friendly hospital? At its simplest, it is a hospital that takes end-of-life care seriously and is implementing the quality standards for end-of-life care in hospitals, which set out a shared vision for what hospitals should be aiming for and what patients and families should expect. At its heart, it is the culture change programme which introduces numerous practical resources to enhance the culture at end-of-life. I want to bring the end-of-life care symbol to the attention of the committee this morning. This has been developed to respectfully identify items connected with end-of-life. It is inspired by ancient Irish history and is not associated with any one religion or denomination. When one sees this displayed in the hospital ward it signifies that a person is very close to death or has died. It signals to all staff, other patients and families that an intensely personal and profound experience is happening to a person and their family in this ward at this time, of which they should be mindful.

I thank the committee for reading my submission and ask that all the recommendations therein be given consideration. I would like at this point to highlight three of the recommendations. We have excellent committed staff in our hospitals and we need to support and invest in them to ensure they care for our loved ones with competence and compassion. We need to ensure we have adequate numbers of staff on the ground that can provide compassionate care and be present for patients and their families. We need a national end-of-life and bereavement strategy to cover all aspects of dying, death and bereavement in Ireland. We need and can do so much better for our dying patients and their families.

When pressed, most of us in this room this morning will say we wish to die at home. My wish for members and I is that this will happen. If not, I hope that by the time they die, every hospital in Ireland will be a hospice friendly hospital and offer them patient-centred, compassionate care, because they matter. The following is a link to a five minute DVD entitled, "A Wish":irishhospicelibrary.wordpress.com/2012/07/18/a-wish-new-animated-video-from-the-hospice-friendlv-hospitals-programme/. It captures and explores the important role all staff play in providing end-of-life care for those of us who will die in hospital. I ask that the committee watch the DVD. A good death in hospital is possible. Our challenge is to make it happen.