Bringing hospices home

Death comes to us all, and in recent years there’s been an ongoing debate about how we can die with dignity. For the Irish Hospice Foundation, a key part of the answer is bringing hospice-style care to wider society.

“In 1986 we were formed by an inspirational lady, Dr Mary Redmond, the late Dr Mary Redmond,” says Helen McVeigh, the foundation’s head of fundraising, explaining how it was after Dr Redmond’s father’s death that she set out to expand hospice care in Ireland.

“She really pioneered this idea that people should be able to end their days with dignity and respect. She founded us as the Irish Hospice Foundation. Her principles that she set up at the very beginning are still with us, but over the three decades we have expanded beyond hospices and the building of hospices – we now are bringing hospices to more people than really are in the built hospices, and really just trying to push people to think about the best end-of-life care wherever we are,” she says.

“That has brought us into advocating for better services, for putting end-of-life care into the training and education of healthcare workers and of doctors, and of specialists so that end-of-life care becomes as important as new-life care,” she continues.

“So that has taken us to all different regions. We’re working with hospitals to provide bereavement rooms, improving mortuary spaces and all the areas that we will all be touched by at some stage of our lives. So it’s huge what we do, but those key principles of looking after people and caring about people who are dying and those that are left bereaved, those principles are still very true to us today.”

Originally from Devon in England, Helen joined the foundation almost six years ago for a 12-week posting, having initially moved to Ireland in 2000 for – she thought – two years. She’s evidently kept busy raising funds for the charity, given how much it does.

“It’s a great organisation to work with, and I’ve a great team working with me in fundraising. We have a team of eight in our fundraising staff, not all full time. We work around the country to make sure that all the money that we need comes in for the programmes that we run,” she says.

A key programme entails bringing hospice-style care into people’s homes so they can spend their last days where they’ve spent their lives.

“One of the things that we would do is have a service called Nurses for Night Care which brings professional nursing to people who are dying and brings it to them in their homes,” she says, explaining that the service – open to anyone without a cancer diagnosis – is provided to homes all over Ireland.

“We are providing that service in the home and we fund all of that around the country, and it’s available 365 days a year everywhere in every part of the community,” she says.  “We’re extremely proud of that service because we know from people we talk to and we meet that it’s very much needed, and it’s what we want – most of us would want to spend our final days at home in a place where we’ve so many memories, surrounded by familiar things, not a busy hospital ward, but somewhere that’s peaceful and respectful, and is your home.”

Effort

The effort to bring hospice-style end-of-life care to people wherever they are extends also to hospitals and other institutions she adds.

“We work with over 40 hospitals around the country and bring hospice care to hospitals; we have a programme called Hospice Friendly Hospitals, and it’s about bringing the best end-of-life care to hospitals,” she says.

“We know that people will be having their final days in a residential care home, so we’re there as well, and we have a programme called CEOL – Compassionate End Of Life – and it is working with people in residential care homes, so that staff have that end-of- life care training and knowledge so they can bring the best end of life care,” she says. “Twenty-five percent of deaths occur in residential care homes, and it’s really important that those people have the best end-of-life care, as well as people who are in hospitals or hospices or at home.”

“We’re trying to bring that level of care absolutely everywhere.  That’s really what we’re about,” she says.

While maintaining that Ireland’s hospices do “a fantastic job”, Helen points out that 94% of the country’s deaths occur outside of formal hospices and says that the foundation tries to encourage and promote hospice-style care everywhere, while also trying to work in other areas around death.

“On top of trying to bring hospice care to the people, if you like, a huge amount of our work now is involved in bereavement,” she says, noting how death affects both the dying and those they leave behind. “We’re working for those people too, so we have bereavement training and education programmes, we have the Irish Children Bereavement Network working with people around children’s bereavement because we know a child’s journey through bereavement is very different from an adult’s one, so there’s a huge amount of work done there as well.”

In general it’s worth being more open about death, she says.

“It’s very difficult. It’s not an easy subject for anybody to tackle,” she says, while saying that it is worth thinking and talking about how we would want our final days to be like, and how things should be for our families. Indeed, the foundation has a programme called Think Ahead intended to facilitate this, and to map out practicalities of our last days and what we leave behind, ranging from our medications and care preferences to where bank statements and passwords might be.

“And that part of encouraging people to think about what will happen to you is all part of that conversation,” she says. “This is going to happen to all of us, we’re all going to be touched by death and by saying goodbye to people. And we don’t want to scare people, there’s nothing morbid in this, we do have to look at this in a very dignified and respectful way. And a very organised way too, I’d say”.

Making wills is an obvious part of considering our last days, of course, and with so much to do – last year the foundation trained 3,000 staff, mostly frontline care workers – and heavily dependent on voluntary funding, the Irish Hospice Foundation is deeply grateful for legacy donations.

“We are absolutely thrilled with any support that comes through from a legacy because it will help us do so much for so many people. Every single one of us will be touched by dying, death, and bereavement –  it’s a perfectly normal part of our lives and of our journey through life, and any donation in support of that will help us with that journey,” she says.

“We’re a small charity,” she concludes. “We can’t deal with it all ourselves, but we certainly can empower people to work as frontline staff all over the country so they have the best end-of-life care to offer to the people that they work with.”