Fr Bryan Nolan tells of his work in the Hospice Friendly Hospitals Programme. It describes how to provide best care for people in the last days of their life.
Last year, I took on a new challenge when I joined the Irish Hospice Foundation as a development coordinator to work on their Hospice Friendly Hospitals (HFH) Programme. This groundbreaking five-year programme was launched by President Mary McAleese in May 2006 and aims to put hospice principles into hospital practice.
More than forty acute and community hospitals and facilities for older people are taking part in this first phase of this programme. A number of development coordinators – including myself – have been employed to assist and support hospital staff in reviewing existing practice and devising more patient-centred responses.
I work with a number of hospitals in the north-east of the country. I review practices in five acute hospitals and liaise with the staff in working out how to improve the service that is offered to individuals at the end of their life.
For nearly twenty years, I worked as a Chaplain in the Rotunda and Beaumont Hospital where I accompanied people – both patients and relatives – in their loss. I also liaised with other members of the multidisciplinary team to try and improve the care we delivered around death and dying.
My new job is still concerned with end-of-life care but instead of being by the bedside, I am working in the background. From this position, I am working with staff to ensure that individuals and their families have as comfortable and dignified a death as possible.
Most people wish to die at home, to be conscious and pain-free and be surrounded by the people they love. The first ever national survey in Ireland on attitudes to death and dying in 2004 found that more than two thirds of people wished to die at home with only 10% expressing the preference to die in hospitals.
The reality of death in Ireland is, however, very different. Each year almost 30,000 people die in this country. Two thirds of these die in hospitals, with 40% dying in acute hospitals. For them, the hospital or institution is the final stopping place on their journey in this world.
In my new role as development coordinator, I work with a number of hospitals in the country rather than two city hospitals. Each day is different: a new challenge presents itself; a new solution is suggested. What is consistent is people’s desire to make sure that they can provide the best support possible to people who are dying and the families who are left behind.
I have seen how hospital staff, in often difficult circumstances, make every effort to make the final hours as dignified as possible for patients. This means ensuring that people’s choices for treatment are understood and that they and their families are fully informed of what lies ahead. They are given privacy for those important last conversations and there is an effort on the part of all staff to ensure that all the emotional, physical and spiritual needs of this person are met.
Families can be haunted for a long time by the small indignities that they and their loved ones face, such as being told a prognosis in a hurried way in a busy corridor or in a cupboard which has been transformed into a makeshift consultation room.
It can be distressing for patients to spend the end of their days in an alien space with the public ward crowded with strangers, a blaring TV on the wall and with little privacy other than a thin curtain drawn around the bed. They can also be subject to unnecessary medical investigations in the last hours of life.
It is often the affairs of the heart and of the spirit where people need the most support. They can be anxious about many things: What’s it all about? What is in store for me in the afterlife? Why is this happening to me, to our family? These questions are often asked by people with a strong faith as well as by those with none.
Anyone who has been by the side of a person who is dying will be familiar with the struggle to search for meaning within their personal suffering. This can be a difficult time for people as they examine their lives in great detail and try to make sense of what is happening to them. People need to be surrounded by skilled staff who allow for these profound questions and support the patient and their family.
Families can feel angry, confused and ultimately alienated as they feel powerless to make things better for their loved one and are submerged in the hospital routine. Following the death, their distress can be compounded by finding themselves in a mortuary with grim decor and being handed the belongings of their loved one in a plastic bag.
At its core, the Hospice Friendly Hospital programme believes that nobody should die alone, frightened and in pain. A good death in hospital is possible. Our challenge is to make it happen. www.hospicefriendlyhospitals.net
This article first appeared in The Messenger (April 2008), a publication of the Irish Jesuits.
