COVID-19 making the gruelling experience of dying or grieving even more painful

Of all the cruelties inflicted by the pandemic, separating people from someone they love who is about to die has to have been among the most vicious. And what of people who received a life-altering diagnosis this year, or who are trying to adjust to life after the death of a parent or spouse?

While the upheaval caused by COVID-19 to the economy, education and daily life tends to dominate the public conversation, the pandemic has also profoundly altered the way people are living with and dying from other causes, as well as changing how we are able to mourn and bid farewell to those we love. For Hospice Services, an arm of Community Care Kawartha Lakes, 2020 has meant rethinking nearly everything it does in order to help clients get through this most unsettling of times.

Hospice volunteers who had previously spent several hours a week providing care and support for people in Ross Memorial Hospital’s palliative care unit were no longer able to do so. (Palliative care is often thought of as comfort measures at the end of someone’s life, but in general is aimed at ensuring the best possible quality of life for people with serious illnesses, and extends to people who are grieving a death.)

In the early stages of the pandemic, the hospital allowed patients nearing the end of their lives just one visitor per day, later increased to two. (The hospital also offers half-hour virtual visits for all patients.) The two-visitors-per-day rule applies whether someone drops in for 15 minutes or spends all night by the patient’s side.

The limit, while an important part of the hospital’s plan to reduce risk from COVID-19, meant that as they approached their final days, more people opted out of hospital care in order to be where they could spend time with as many of their loved ones as possible.

“There definitely was an increase from March to the end of October in the number of palliative care clients of ours who died at home, and a decrease in the number who died in the hospital,” says Michelle Griepsma, manager of Hospice Services. “That affirms the anecdotal stories that we’re hearing where people are saying to us ‘My mum wants to die at home. She doesn’t want to go into the hospital because we can’t all be there.’”

Hospice staff and volunteers help clients to manage pain and cope with their symptoms at home, and provide emotional support as a loved one slips away. As for the Hospice folks who used to volunteer in the hospital’s palliative care unit, Griepsma says many are trying new things, perhaps making a phone call when they can’t sit at a bedside. “Maybe they visit in the driveway. One volunteer writes letters to clients. They’re finding any creative way that they can.”

Faced first with a sharp drop in demand for some services followed by a surge, Hospice had to adapt, and fast. As soon as it became apparent there was a need for COVID-specific bereavement programs, the organization started a virtual group to help people through a uniquely difficult time.

“These people would have experienced the death of someone in either a long-term care home or hospital setting or at home, and felt the restriction of the support that was able to be offered to them,” Griepsma says. “Grief is universal in some ways,” but for people bereaved during the pandemic, “there are those extra similarities.” The online group allows people who share the strange awfulness of a loved one’s death in these times to talk to others enduring the same thing.

Hospice staff quickly realized they would have to find new ways to connect clients with support and with each other. “Our programs went very quickly to a virtual platform compared to others in the province,” Griepsma says. “Everyone rallied — the volunteers did, the staff did and they all made it work very quickly.”

They settled on the Zoom videoconferencing platform to move groups online, learning themselves as they eased clients along. “There was an awful lot of individual coaching that went on to help people feel comfortable with this new technology,” Griepsma says.

Many support groups now have protocols in place to allow some in-person participation along with the virtual option. That’s been invaluable for Tanya Noble, who’s not always able to leave Woodville to attend a support group session at the Hospice offices in Lindsay. “It’s great to be able to Zoom if I can’t get someone to watch my kids — I can just go to another room. I’d rather see people in person but you still get the support even through Zoom.”

She credits Hospice with helping her cope after her husband Sean suffered a fatal heart attack at their home in June 2019. “It’s changed my life. It’s given me the tools I need to understand that while my life will never be the same, I have choices about how I live it.”

The Circle of Hope program she’s participated in first met in person, shifting online after the pandemic hit. Her two children, who were four and five years old when their father died, had been going to a special kids-only Hospice program run out of Lindsay’s Early Years Centre. A new children’s group, STARS (for Standing Together and Receiving Support), started meeting online in October. Each week the Hospice facilitator leads them through play-based activities to help them work out their feelings through words and art.

“They enjoy it,” Noble says. “It’s helped them realize they’re not alone. They felt no one else was like them, but to see that there are other kids who are going through the same thing has helped them become more open.”

In the midst of everything else, Hospice also started brand new programs. One is a weekly session that leads participants through a reflective process to write a journal; another, called Living Beyond Cancer, is for those who have the disease or have undergone treatment. To provide some comfort at a time when many people have not been able to hold funerals for a loved one, Hospice even moved its annual memorial service online, streaming the November event using St. Andrew’s Presbyterian Church’s YouTube channel.

Although not a perfect replacement for in-person sessions, the virtual groups have advantages when everyone’s concerned about leaving home, says Griepsma. Those living with an illness can stay where they know they’re safe, and caregivers don’t have to worry about finding someone to be with their loved one while they’re out. “Any way that they can connect to some support is helpful, even if it’s online,” says Griepsma.

Hospice’s embrace of new technology to meet new demands is paying off in other ways. “We’re so resistant to change, but when we’re forced, we can really rise to that challenge,” Griepsma says. She adds that while people in her field have always worked together, “It’s just so easy now. We connect with the greater hospice community and with people all over the province without having to travel.”

She and her colleagues are well aware that COVID-19 will continue to require them to adapt for a long time to come. Rituals that help us through death and grieving, such as funerals and meals with family and friends, have been severely limited for nine months, with no end in sight yet. As a result, many in the palliative care field expect to see effects that will linger for years. “The trauma from the pandemic is not like other events,” Griepsma says, especially for children. “Usually a traumatic event is one incident, where the pandemic is a long, sustained thing.”

It would be easy to get discouraged, but Griepsma says everyone involved in the local Hospice organization can be proud of how they’ve rallied to help their clients. “I think we’ll look back and think about all the things we learned about our community’s resiliency and our own resiliency as a team.”

Whether their efforts involve a telephone call with someone in crisis, a Zoom drawing session with kids, an in-person time to share the weight of caregiving or a virtual meditation hour, Hospice staff and volunteers are continuing to find ways to help grateful people like Tanya Noble. “It makes such a difference. What they do is invaluable.”