There’s a white house in Bancroft, at 27 Bridge Street East, set way back from the road. Most days, it’s pretty quiet; with a couple of staff working from the office that has been built into what was once the garage of the home.
As unremarkable as this house looks from the outside, it is a symbol of what happens when a community takes action and decides to care for their own.
The white two-story house was the first rural residential Hospice in Canada and now, three beds later, the team at Hospice North Hastings is asking community members to call them directly when there is a need for care.
“Don’t wait for a referral,” urges Hospice North Hastings coordinator, Heather Brough. “If you need us, or if you know of someone that needs us – please, just call us. Our services are free, and we can help to provide care, we can help with education and we will act as a patient advocate.”
Hospice North Hastings started with a small group of volunteers, in the basement of the old Bancroft Hospital. The goal was to provide additional, supportive home-based care to those who were facing death in the region – caring when there was no curing.
The home-visiting Hospice grew, thanks to a local team of doctors who saw death as an important part of life; a part of the life journey that should be talked about and planned for. The Hospice was also supported, at that time, by the Community Care Access Centre (CCAC) who connected patients to medical and paramedical supports in their own homes.
And that’s where people wanted to live their final days – in their own homes.
Over the years, as the complexity of cases changed, and in-home supports started to decline, the community came together to raise funds for a residential Hospice and in 2006, The Residential Hospice House for North Hastings was opened, providing a home-like environment where 24-hour compassionate care could be provided by PSWs and highly-trained Hospice volunteers.
The residential Hospice provided one more choice when people were dying. A back-up plan for many if their care became complex or if their caregivers needed additional support. And really, in many cases, Hospice is there just as much for the living as it is for the dying because of the physical and emotional toll that caregiving takes on even the strongest people in our community.
When the decision was made to start the residential Hospice, the government wanted a ten-bed, fully staffed facility but that was way more than the community needed or could support so, Hospice North Hastings made a decision to go it alone; the first of many times that government money was turned down in order to take a direction that made sense for our rural reality.
This made fundraising a bigger focus, but the fully independent Hospice survived through inspections, government mandated retrofits – like a $35,000 sprinkler system and when accessibility rules came into effect, a $90,000 ground floor suite was constructed because that was more affordable than an elevator.
Things were always tough for the small Hospice but then three years ago, everything changed when patient referrals began to drop.
Looking back, the Hospice team says they knew something was happening, but they didn’t really understand why. From staffing changes within other organizations to a lack of conversation around death and dying, terminal patients were not receiving early referrals to the home-visiting Hospice or the Residential Hospice.
Hospice care is about helping to improve the quality of life for a patient, for as long as the patient has to live, so early referral is key but suddenly, the referrals that were coming through to Hospice were for patients who were often hours away from death – a complete shift in what had always happened historically.
And then there was the PSW shortage.
Through the home-visiting Hospice, highly-trained volunteers are provided, for free, to assist in the home. They also help with care provided in the Residential Hospice House for North Hastings. PSWs have always been provided through the CCAC and more recently, through the South East Local Health Integration Network (SELHIN).
As PSWs became harder to find, the SELHIN and the CCAC had more and more difficulty finding PSWs to provide care in the community and at the Hospice House. Anyone who has relied on home care across North Hastings will share tales of gaps in care and a lack of consistent service and this impacted Hospice North Hastings because if the CCAC/SELHINS could not find PSWs, a patient could not be admitted to the Hospice House.
To remove this barrier to care, Hospice North Hastings took the bold step of hiring their own PSWs. When the SELHIN could not find PSWs to book for shifts, Hospice provided them and paid for their own PSWs.
This has been working well, but at a great cost to Hospice North Hastings.
Even though the government is not willing to pay for these PSWs, Hospice plans to continue to provide all PSW’s at the Hospice House for North Hastings. And to add to the financial challenge, the SELHIN will soon require PSWs to be at the Hospice House for 24 hours a day; an increase from the 12 hours that had been the previous regulation.
“The cost is huge,” admits Hospice coordinator, Heather Brough. “But we are tough, rural folks, and when the system let us down – we re-worked our own system. This is about providing access to care at the most difficult time in a person’s life and we want to provide the best possible care and that includes continuity of care and standards of care. We want to be able to say ‘yes’ to every admission and not be turning patients away because the government system cannot find staff.”
With one more barrier removed, Hospice North Hastings is seeing numbers start to re-bound but early referrals to the home-visiting Hospice and the residential Hospice remain a challenge, so the agency is now asking anyone with a need to reach out directly – to simply call for care and that’s what the majority of current Hospice clients have done.
Sadly, without calling Hospice directly, many current Hospice clients would not be receiving care. And that’s frustrating because there is a complete system of support ready to be provided with that one call. From medical equipment to highly-trained volunteers and a team who can act as advocates, many free services are being under-utilized.
“With restrictive privacy regulations, in many cases, unless a patient asks for Hospice care directly, Hospice will not be informed that there is a need,” Brough says. “Hospice is not told about these patients so we’re asking people to contact us directly.”
Brough also notes that patient needs will evolve and change during their illness.
“As a patient’s condition changes so does their need for services,” Brough says. “Hospice wants to be ready and able to meet patient needs as they arise and not get stuck waiting for paperwork. We want to show up and get to know you before you are very ill and we want to offer support before caregivers become exhausted.”
This call for self-referral has changed the focus for the small, rural not-for-profit and they are taking every opportunity to speak about their services. They have launched a Facebook campaign and Hospice is spoken of at every Playhouse event – Hospice operates the theatre in Bancroft as a fundraising platform and at Vintage on Hastings, the store they also run, Hospice volunteers work helpful information into every possible conversation. Brough is also starting to book community speaking engagements where she will visit with community groups to share information about Hospice.
“Every person I speak with will have a chance to share this important message,” says Brough. “When there is a need, call us for care.”
Hospice North Hastings is also offering an OPEN HOUSE every Wednesday so that anyone in the community can tour the House to see what is available so that everyone can understand what options for care exist, for free, in our community. The House, at 27 Bridge Street East is accessible and everyone is welcome.
“Drop by and have a cup of tea with the Hospice staff,” Brough says. “Let us meet you now and we can be of assistance in your home or at The Hospice House whenever there is a need. We will be there for you.”
The goal once again, is to reach those who might be waiting for a referral and to let them know that they have to make the call for care so that Hospice North Hastings can do what they do best – to provide caring when there is no curing.
Please call 613.332.8014 if you, or someone you care about, requires care.