John Joyce has lived with dying for more than a decade, since he was first diagnosed with cancer. Today, he is quietly helping to train nursing staff in an even quieter but more successful example of all-Ireland co-operation.
Following operations and 36 gruelling radiotherapy sessions, the Foxford, Co Mayo, man felt reasonably well for five or six months, but then found that he had a brain tumour, which required chemotherapy that damaged his heart.
“My heart’s pumping power went down to 15 or 16 per cent,” he says.
The treatment affected his face, too, and Joyce is now blind in one eye and deaf in one ear. Five years ago, he was told the tumour was inoperable and incurable. Then he began palliative care.
“I can see it in my mind’s eye – the three ladies silhouetted in the window and one of them saying they were from the palliative care team. I thought ‘Okay, I’m dead’. I thought I was gone,” he says.
Palliative care staff continued to offer assistance in a nursing home where Joyce stayed for four weeks and later continued to help when he stayed with his sister for six months.
“Eventually they gave me the courage to move back home. With their help, guidance and motivation I now live alone on my own,” he told Belfast-based the Detail.
In the years since, Joyce has become a member of Voices 4 Care, an initiative of the All-Ireland Institute of Hospice and Palliative Care (AIIHPC) made up of service users, carers and former carers.
Video training
The cross-Border institute involves hospices, healthcare organisations and universities, and seeks to care better for the terminally ill and their families.
Some of Joyce’s videoed training sessions are used to inform new hospice staff.
“One of the nurses recently said ‘John, I’m doing an advanced nursing course and you were in one of the videos for it’,” he says.
Arguing that there should be more cross-Border health co-operation, he says: “Dying is dying, it doesn’t matter where you live, it’s universal and Ireland is one island. Okay, there’s a border, but we’re one island.
"I have friends from Derry, Newry and other places in the North who I meet through Voices 4 Care. It can only be beneficial for us to work together."
In 2009, an expert on end-of-life studies, Glasgow University’s Prof David Clark, reviewed the future of palliative care in Ireland and concluded that an all-island institute could do much to help.
Founded in 2010, the AIIHPC, now led by director Karen Charnley, credits the 1998 Belfast Agreement for creating the environment where such co-operation could happen.
“It is beneficial that we work across and collaborate in both jurisdictions,” Charnley said. “There are always things which people and systems can learn from others.”
The institute does not itself provide palliative care. Instead, it develops relationships, supports research, offers advice to the Irish Government and the Stormont Executive, and holds regular gatherings.
Its 49-strong palliative care research network "leads research" across the island, says the network's chair, Prof Joanne Reid of the Queen's University Belfast school of nursing and midwifery.
Research shared
“We improve and change practice, north and south,” she says. “We didn’t have this infrastructure across the island prior to the AIIHPC. [It] enables palliative care researchers in the North and South to come together.”
Following work with the Marie Curie charity, 10 priorities were set, led by the need to improve out-of-hours' care for the terminally ill, along with finding ways to keep people at home for as long as possible.
“We’re not just doing research for academic exercise,” says Reid. The best knowledge should not “just sit on a shelf somewhere” but should be brought into use everywhere quickly.
Originally funded by Atlantic Philanthropies, the AIIHPC has more recently been backed by statutory organisations such as the Public Health Agency in Northern Ireland and the Health Service Executive in the State.
Originally, it was thought that the AIIHPC would be around for just just five years, but Charnley said “we did a lot of consultations and there was a decision made that there was still a role for the organisation.
“We don’t want to grow for the sake of growing, but we have a vision for the role of the institute and feel there is a clear and meaningful role for it to play.”
For Mary Flanagan, the director of nursing for quality and clinical services in Our Lady's Hospice in Harold's Cross, Dublin, the opportunities offered by AIIHPC to learn from other hospices across the island has been invaluable.
The well-known hospice also runs the Blackrock Hospice in Sweetman's Avenue in south Dublin and the Wicklow Hospice in Magheramore.
Online modules
In particular, she learned about the Echo project – which offered tightly strutured 90-minute online training modules for Northern Ireland hospice staff. In time, Echo has spread southwards, often bringing up to 500 people together.
Saying that the opportunities have been “invaluable”, Flanagan said hospices are able to take “the best of palliative care in the South, the best of the North and then apply it. It’s just the most sensible way to do things.”
For Joyce, his involvement in the Voices 4 Care group is now an important part of his life.
“When I then got the chance to get involved, I took it with open arms,” he says. “Five years ago, I was told I’d have about eight months to live and I’m still here. It’s great to have the opportunity to give a little back. It’s also nice for people who are also having palliative care to hear that I’m still living.”
Because his swallow is “not great”, he is largely fed directly to the stomach by a peg tube. “People ask how I do that, but you just do it. It’s part of your life and part of life is dying, there’s no way around it,” he continues.
“I don’t feel like I’m dying and I don’t mean that flippantly either. I’ve no problem talking about it. Knowing it now as I do, it’s about quality of life. Maybe end of life, maybe not, but it’s all about the quality of life.”