The Hospice Hub is a community-driven initiative committed to offering free, all-encompassing services for individuals nearing the end of life and those navigating bereavement, along with their families and caregivers.
Their mission is to furnish education, information, system navigation, and responsive compassionate support services, with a goal to empower individuals to live with dignity and comfort during this challenging time.
Hospice caregiver and advocate Anne Janssen spoke to Smiths Falls town council’s special committee of the whole on Jan. 29. She shared information about the organization and how the town can support it.
They’re seeking $25,000 to help the Hospice Hub organize and mobilize the Smiths Falls community. These funds would also help the town provide hospice care to people dying, grieving and caregiving in Smiths Falls, and get hospice beds in the community.
The Hospice Hub is a “one stop shop” where patients can access clinical and compassionate care and receive support navigating the health care system at the end of life. It supports anyone who is at the end stage of a progressive disease, or those at the end of life due to frailty and old age who require support for quality of life and unmet needs.
“We connect patients, families and caregivers to the most appropriate provider, service or agency to ease the transitions through end of life and bereavement,” Janssen said.
“Hospice care is not a location or a designation,” she continued. “It’s a philosophy of care that delivers palliative care at the end of life. It’s an approach that can be delivered during a life-limiting illness, at any time, off and on, alongside curative treatment.”
She said 70 per cent of people want to die at home, but 70 per cent die in hospital.
“The cost of dying in hospital is extraordinary,” Janssen said. “It’s far more than at a hospice or at home. It’s not just the cost, it’s the social and emotional cost of dying in the hospital.”
It causes moral distress for the frontline workers, administrators, and “of course for the family that is grieving.”
The Hospice Hub has several supports including caregiver support, hospice beds, education awareness advocacy, home support, and grief and bereavement.
In South Lanark County and Smiths Falls, the region is “aging at an unprecedented rate,” she said. There is an acute care crisis – hospitals are over capacity.
There is a home care crisis with nursing and personal support worker shortages, and the workforce is burnt out, she said. “Care is siloed and uncoordinated, and palliative care suites in hospitals are needed for acute and alternative levels of care.”
There’s only one palliative care nurse practitioner for the region, Janssen said. Outpatient palliative care clinics are an hour away – too far to receive responsive and timely hospice care.
Janssen said they’ve been focusing on building the foundation since incorporating in May of 2023. “It’s been huge strides because of amazing community support.”
They’ve met with healthcare allies and partners, especially the Perth and Smiths Falls District Hospital, which is their flow-through agency, she said. “We are part of a bigger network of health care providers.”
In 2024, Janssen said they’re looking to raise $164,000.
Reasons for the funding include:
It keeps dying people out of hospital, and reduces hallway medicine, ER crowding and lowers overall health care costs.
Attracts nurses, PSWs, nurse practitioners and volunteers.
Taps into the strengths and assets of a community.
Builds the capacity of the community, health care and social agencies to work together to deliver seamless holistic care.
Breaks down health care silos and makes the connections that are essential to a quality end-of-life experience.
Reduce suffering and increases quality of life.
Mayor Shawn Pankow said there has been a plan to have four hospice beds and outreach for people who want to die at home. He asked where the province was in this situation.
“There is funding coming to some extent but when you think of the high cost of keeping someone in hospital at end of life, compared to a 10 per cent cost of caring for them at home, you’re forced to go out there and try to string together funding from a variety of sources to make this work.”
Janssen said it’s slow going but they have a good rapport with Ontario Health East.
“They are very supportive of a community-led initiative,” she said. “They want to see the business case, they want to see the communities behind it, and then they’re ready to support it.”
Coun. Jay Brennan said he supported hospice care as it’s “so very important,” and encouraged Janssen to continue to lobby Lanark – Frontenac – Kingston MPP John Jordan, who is the assistant to the Minister of Long-Term Care. “I think the province can step up and help out here, because it benefits…the people of Ontario in the long-term.”
Coun. Peter McKenna, who chaired the meeting, said hospice has always been a grassroots organization. It’s never really worked from the top down, he said.
“Every different type of government has been pushed into it,” McKenna said. “When they do fund it, they don’t fund it all. Communities in Ontario and in Canada have always had to do the fundraising and all the work. Mostly women, who are caregivers, are doing all this work for free.”
McKenna said that this group has done more for hospice care in the past 18 months than what has been done by the province over the past five years.
“You’re in a funny spot,” he said. “We’re close to finalizing our budget, but you’ve set the table. Maybe not for this year, but for next year.”