Amanda Brown didn’t know what to expect as she prepared to run the first online wellness and coping program for St. Joseph’s Hospice this past April.
As the London-based hospice’s program coordinator, she wasn’t sure anyone would participate in the hour-long session, hosted on the video-chat platform Zoom and offered to the relatives of patients who had recently died at the facility. But, as it turned out, attendance wasn’t a problem: a dozen people logged on — more than the eight who had been showing up before COVID-19 scuttled arrangements for the hospice’s in-person support groups. “My first reaction was relief,” says Brown. “And then, afterwards, after the session was over, it was satisfying to know … that, yes, it worked. Yes, we pulled it off — we helped people.” Encouraged by the response, Brown has rolled out four virtual programs, which include such activities as journalling and self-massage. This week, the hospice has started taping a series of cooking videos that will replace its in-person lessons.
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As the reality of the coronavirus pandemic settled in this past spring, hospices such as St. Joseph’s had to find ways to maintain crucial services for patients and their loved ones. And, more than half a year since the province went under lockdown to curb the spread of the infectious disease, some in the palliative-care field say certain changes — affecting everything from client care to hospice construction — will long outlast the pandemic.
“The long-term lesson coming out of this is that the pandemic identified a demand for services that were easy to access by the client, where they didn’t have to leave home,” says Rick Firth, president and CEO of Hospice Palliative Care Ontario, which represents the province’s 132 hospices. “So hospices are looking at how they adapt and continue some of those services when they resume full in-home, in-person visiting post-pandemic.”
For Jenny Stapleton, St. Joseph’s online groups have provided support as she deals with a close relative’s death last year while battling pandemic-related feelings of isolation. “It’s that … sanctuary that you want — just having a group check in with you every week,” she explains. “By the end of that hour, generally you’re feeling better because it’s being talked about, discussed, and supported.” Before signing up for a host of online programs, including mindfulness meditation and self-compassion sessions, she had been attending hospice activities in person. “The biggest difference is you kind of see a different side of everyone because they’re in their homes,” she says of the virtual offerings.
And change won’t be limited to program delivery, Firth suggests: as a result of the pandemic, new facilities will be built differently, and existing ones will be renovated to updated standards. “We have to look at retrofits for the existing facilities: things like the design of the interior layout to minimize where there are bottlenecks in passages or traffic corridors, entryways that are designed to support active screening,” he says. “Some hospices, recently built, already had a double-entry system with a reception desk that was behind glass so they could have conversations with the person when they entered the entranceway instead of when they went through the entranceway into the building.” Equipment and ducting for negative-pressure rooms, which let air in but not out, are also important for infection isolation, he notes.
Firth adds though, that all changes must be balanced with a key hospice tenet: “Hospices are home-like settings,” he says, and it’s “absolutely” a challenge to maintain a welcoming feel. “When you go into a residential hospice, it should reflect what you would see in a typical home rather than what you would see in a hospital corridor.”
The Hospice of Elgin’s new facility is expected to open in 2022 in Elgin County, south of London, and St. Joseph’s Health Care Society staff are already considering the types of features that Firth mentions. “Many hospices have done a wonderful job adapting to COVID, but we have the luxury of intentionally designing a space with COVID (and beyond) in mind,” Laura Sherwood, director of hospice partnerships at St. Joseph's, tells TVO.org in an email.
With the opening of the Hospice of Elgin’s facility potentially years away, the decision was made to provide telephone- and online-counselling services for caregivers, people coping with grief related to death, and individuals nearing the end of life. “We were, as part of our project, always interested in how to provide person- and family-centred care,” Sherwood said in an earlier interview. “And that meant that, instead of expecting the population to come into hospice, we push out services into those micro-urban and rural communities as best we can — COVID expedited the process.”
Through the service, which began last month, those in palliative care, as well as their caregivers and grieving families, can quickly book an appointment to speak to a registered psychotherapist. “It literally is calling a number, and, within 72 hours, the counsellor that will be supporting you through that journey will contact you and start that process for scheduling your appointment,” says Sherwood.
When it opens, the Hospice of Elgin will be the only hospice in the vast county, which encompasses nearly 2,000 square kilometres off the northern shores of Lake Erie. Because of the large catchment area, Sherwood expects that there will be demand for the phone service post-pandemic: “For some individuals, for them to drive in to a centralized location could be 45 to 50 minutes, and when you’re palliative — or when you’re a caregiver — that time is really a luxury.”
Stapleton agrees that moving meetings online has been a time-saver. “I’m almost feeling more connected because I’m able to do more of them because it doesn’t require me running across town.”
Still, there are things she misses: the in-person connection, “the healing touch” of massage therapy, the smell of cookies baking, and the taste of the soup served onsite. “What I’ve learned from hospice is you always carry grief with you,” she says. “You’re not alone — so I like that type of community that doesn’t judge you for your grief and doesn’t make it wrong to carry it with you, even years later.”
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Correction: An earlier version of this article indicated that the Hospice of Elgin will be the only hospice in the county; in fact, it will be the only hospice in the county. TVO.org regrets the errors.