John Joyce has been living with death for more than a decade since he was first diagnosed with cancer. Today, he is quietly helping to train the nursing staff into a quieter but more successful example of collaboration across Ireland.
After the operation and 36 grueling radiotherapy sessions, the Foxford, Co., Mayo, man felt well enough for five or six months, but then discovered he had a brain tumor that required chemotherapy that damaged his heart.
“The pumping power of my heart dropped by 15 or 16 percent,” he says.
The treatment also affected his face, and Joyce is now blind in one eye and deaf in one ear. Five years ago, he was told that the tumor was dormant and incurable. Then he began palliative care.
“I can see it in my mind’s eye – three women are silhouetted in the window and one of them is saying they are from the palliative care team. I thought ‘Okay, I’m dead’. I thought that I am gone,” he says.
Palliative care staff continued to offer support at a nursing home where Joyce stayed for four weeks and later continued to help when she stayed with her sister for six months.
“Finally he gave me the courage to go back home. With their help, guidance and inspiration, I am now alone on my own,” he told Belfast-based The Detail.
In the years that followed, Joyce has become a member of Voices4Care, an initiative of the All-Ireland Institute of Hospice and Palliative Care (AIHPC) made up of service users, carers and former carers.
The cross-border institution includes hospices, healthcare organizations and universities, and it seeks to provide better care for the mentally ill and their families.
Some of Joyce’s video training sessions are used to inform new hospice staff.
“One of the nurses recently said ‘John, I’m taking an advanced nursing course and you were in a video for this’,” he says.
Arguing that cross-border health cooperation should be greater, he says: “Dying is dying, it doesn’t matter where you live, it’s universal and Ireland is an island. Well, there’s a border, But we are an island.
“I have friends from Derry, Newry and other places in the north whom I meet through Voices 4 Care. Working together can only be beneficial for us.”
In 2009, Professor David Clarke of the University of Glasgow, an expert in end-of-life studies, reviewed the future of palliative care in Ireland and concluded that an all-island institution could do much to help.
Founded in 2010, the AIHPC, now led by director Karen Charnley, credits the 1998 Belfast Agreement for creating the environment where such cooperation can take place.
“It’s rewarding that we work and collaborate in both jurisdictions,” Charley said. “There are always things people and systems can learn from others.”
The institution itself does not provide palliative care. Instead, it develops relationships, supports research, advises the Irish government and the Stormont executive, and holds regular meetings.
Its 49-strong palliative care research network “leads research” across the island, says Professor Joan Reid of the Queen’s University Belfast School of Nursing and Midwifery, the network’s president.
“We improve and change the practice in the North and South,” she says. “We didn’t have this infrastructure across the island before AIIIHPC. [It] Enables palliative care researchers in the North and South to come together.”
After working with the Marie Curie charity, 10 priorities were set led by the need to improve care for terminally ill people, along with finding ways to keep people at home for as long as possible.
“We’re not just doing research for academic practice,” Reid says. The best knowledge should not “just sit somewhere on a shelf”, but should be quickly put to use everywhere.
Originally funded by Atlantic Philanthropies, the AIHPC has recently been supported by statutory organizations such as the Public Health Agency in Northern Ireland and the Health Services Executive in the state.
Originally, it was thought that the AIHPC would only be for five years, but Charnley said, “We did a lot of consultations and a decision was made that there was still a role for the organization.
“We don’t want to grow to grow, but we have a vision for the role the institution will play and we feel it has a clear and meaningful role to play.”
For Mary Flanagan, Director of Nursing for Quality and Clinical Services at Our Ladies Hospice in Harold Cross, Dublin, the opportunities to learn from other hospices across the island by AIHPC have been invaluable.
The well-known hospice also runs Blackrock Hospice at Sweetman Avenue in South Dublin and Wicklow Hospice in Magheramore.
Specifically, she learned about the Eco Project – a tightly structured 90-minute online training module for hospice staff in Northern Ireland. Over time, Echo spread southwards, often bringing together 500 people.
Noting that the opportunities have been “invaluable,” Flanagan said hospices “are able to deliver the best palliative care to the South, the best of the North and then implement it. It’s the smartest way to do things.”
For Joyce, her participation in the Voice 4 care group is now an important part of her life.
“When I got the chance to be involved, I took it with open arms,” he says. “Five years ago, I was told that I would have about eight months to live and that I am still here. It’s great to have the opportunity to give a little back. It’s also good for people who are in palliative care to hear that I’m still alive.”
Because his swallow is “not great”, he is largely fed by a peg tube directly into the stomach. “People ask how do I do it, but you do it. It’s part of your life and dying part of life has no way of it,” he continues.
“I don’t think I’m dying and I don’t even mean it. I don’t mind talking about it. It’s about quality of life as I know it now. Maybe end of life, Maybe not, but it’s all about quality of life.”