Tell 10 people about palliative care and message will have ripple effect
Bryan Sweet, the chaplain at Pleasant Manor and a palliative care volunteer, says the most important quality of a volunteer is the ability to listen. Penny Coles/ Niagara Advance
Tell 10 people about palliative care in Niagara-on-the-Lake.
Reinforce the message that palliative care is not just for the last days or weeks of life for terminally ill patients - ideally, it should begin when a life-threatening condition is diagnosed so that clients and their families are supported throughout their journey.
That’s the theme of National Hospice Palliative Care Week - talk about the importance of palliative care to help spread the message exponentially.
Bryan Sweet is happy to talk about the benefits of palliative care, as he sees first-hand through his role as chaplain at Pleasant Manor.
He’s also a volunteer, on the board of Niagara-on-the-Lake Community Palliative Care Services, where he acts as a liaison between the long-term care home in Virgil and the longer palliative care service - each of the homes in NOTL have a representative on the board, he says.
“We bring awareness of what’s available into the home. When we recognize the need for a visiting volunteer, we can help.”
One of the difficulties he sees is people entering long-term care later in life, when they’re more fragile, he says, and palliative care is often not sought out until the final days or weeks of illness, when it could be so helpful to patient and family if offered sooner - as soon as a life-threatening illness is diagnosed.
“It’s a tricky thing, bringing palliative care early enough. Palliative care in most people’s minds means end-of-life care, in terms of days or weeks, but there are situations that are longer-lasting that would benefit from palliative care.”
It would give families more time to honour their loved ones, he said.
“If we introduce a palliative care approach early, we can help people have those conversations.”
As chaplain at Pleasant Manor since 2002, Sweet brings with him a varied background, in life experience and leadership though church and missionary work. He’s there daily to offer support, visit the sick and “walk alongside them in their illness,” he says. “And if I’ve learned anything, it’s to be quiet and listen.”
He’s also learned not to say, “I understand,” he adds, and to listen in a way that doesn’t judge.
In listening, he’s learned to respect the fact that people often want to talk about the decisions they’ve made throughout their lives, sometimes decisions that have caused a rift in the family, and he can offer to facilitate family interaction to discuss those decisions.
“Many individuals who choose to be involved in palliative care are there because of their own pain, their own losses. I call them ‘the community of the wounded.’ Unless you’ve had some experience with loss and some sense of what it’s like, I think it could be difficult to reach out to others in those circumstances.”
He sees palliative care as “not so much learning how to die well, but learning how to live well as you reach that stage of life,” he says.
He has great respect for palliative care volunteers.
“They’re great, good-hearted people, and it’s wonderful that they give their time at such a difficult time in others’ lives. It takes sensitivity.”
One more thing he’s learned - talking with people who are at the end stage of their lives often benefits the listener more than the individual who’s doing the talking.
And while it might sound like a volunteer job that involves “a sad situation, dealing with illness and death,” it’s usually anything but - people are often overwhelmingly grateful for the lives they lived.
“You come away richer from the experience yourself and not afraid to deal with those types of discussions. You learn it’s a very valid part of life, and to embrace it rather than be afraid. I have found that most people are so positive, they help you focus on what is important in life.”
Terry Mactaggart, program co-ordinator for the NOTL Community Palliative Care Service, says the organization was founded more than 25 years ago, to provide caring support and quality of life for seriously ill people in town and their families.
A group of about 20 trained volunteers - the number fluctuates - offers services to people at home or at the three long-term care facilities, providing compassionate, emotional support, companionship and caregiver relief, offered in strict confidentiality.
And yet, although awareness is growing, there are still people in the community who don’t know that palliative care is available in NOTL she says.
“We’re a death-defying society. It’s hard to make people realize that you can live and die with dignity. People just don’t want to talk about it.”
The group is always looking for more volunteers to help meet the needs of clients - especially men, since some men receiving palliative care would rather have another man to talk to.
The service also lend equipment such as recliner/lift chairs, eggcrate mattresses, wheelchairs, recliner/lift chairs, walkers, TV/DVD players, relevant books, CDs and DVDs, and in addition to a library and office at the old nurses’ residence behind the hospital, there is a small apartment available for families visiting a palliative care client.
To find out more about NOTL Community Palliative Care, or to ask about volunteering, phone the office at 905-468-4433.