Care.Connected.

How Canadian Virtual Hospice is changing the landscape of palliative care in Canada

Monday, November 20, 2017 – Michelle Holden

The first time Shelly Cory heard the name Virtual Hospice, she was sitting in Dr. Harvey Max Chochinov’s Winnipeg living room in 2001. The room was packed with palliative care leaders from across the country who had come together to talk about the creation of an online resource for Canadians dealing with death and dying – a virtual hospice.

“Before Web 2.0, the internet was a very cold place; it was strictly information-gathering – very little connecting on a personal level,” said Cory. “There was nothing like Virtual Hospice in the world.” Cory was at that first meeting in her capacity as a policy advisor for Senator Sharon Carstairs, the Minister for Special Responsibility with Palliative Care at that time.

Because of her deep roots in its creation, Cory’s arrival at Virtual Hospice as Executive Director in 2007 has been described as a homecoming. 

But back in that living room and in the years leading up to the official launch of Canadian Virtual Hospice in 2004, the discussion centred on how to navigate online communications in difficult and often emotionally-charged health situations. The group also grappled with how to manage the risk of connecting Canadians online with a clinical team to respond to their questions. “Being new and innovative, the path wasn’t always clear but the group decided they wanted to take a leap of faith,” said Cory.

And so they leapt. Virtualhospice.ca (portailpallaitif.ca) launched as an online resource for advanced illness, palliative, and end-of-life care for patients, family members, healthcare providers, researchers and educators. In those early years, HIROC also took that leap of faith providing insurance coverage for the unique service and the clinical team who pioneered online communication with patients and families.

Thirteen years later, the site is vastly different. The English and French sites have grown to more than 10,000 pages of content with new features to meet evolving needs. The For Professionals portal offers the largest repository of tools to support clinical practice in the world. In an effort to delve deeper in various topics, three new sites MyGrief.ca, LivingMyCulture.ca and Methadone4Pain.ca were launched in 2016 with funding from the Canadian Partnership Against Cancer.

The team behind the scenes is Cory, two full-time staff and a part-time Clinical Nurse Specialist in Winnipeg. But the work couldn’t be done without the larger virtual team – healthcare providers from a wide range of specialties: social workers, a pharmacist, a First Nations elder, spiritual care advisors, pediatric specialists, bereavement experts, and three physicians. “We’re trying to cover the waterfront of expertise,” says Cory.

Asked and answered

One of the many benefits of the team’s vast expertise is the site’s Ask a Professional resource. Canadians can ask questions about any topic related to palliative care and grief and receive a response within three days. “As end-of-life situations are often complex, there may be many layers to the questions. It’s not uncommon to have three or four team members collaborating on an interdisciplinary response,” said Cory.

“Our team gets the tough questions – the ones people may not feel comfortable asking in person,” said Cory. Things like what to expect as death nears, how to manage difficult family situations, how to let your loved ones know they won’t be forgotten, and other questions many might not want to ask their doctor. “Our team is incredible at responding to these unmet needs in a compassionate way,” said Cory.

The most frequently asked questions are anonymized and added to the site’s Asked and Answered section where users can see what other Canadians are experiencing. “In addition to providing a wealth of information, people feel less alone in what they are going through,” said Cory.  

The Asked and Answered section is not just for the patients and families. “The questions and responses also help healthcare providers frame difficult conversations,” said Cory.

Creating cross-cultural awareness

In order to give people an opportunity to talk about what death looks like in their own culture, last year Virtual Hospice launched a site called LivingMyCulture.ca.

The team reached out to 11 cultural communities and asked them about how they approach advanced illness, end of life and grief. Currently the 650 video clips (available in 13 languages) on the site include First Nations, Inuit, Chinese, Ethiopian, Italian, and Indian cultures, to name a few. To maximize accessibility, videos are available in 13 languages including Af Soomali, Mandarin, Urdu and Farsi.

By developing an awareness of different cultures, Virtual Hospice has been able to build bridges through conversation.  In one case Virtual Hospice had been referred to two women in the same community with advanced breast cancer. They’d arranged for the women to meet off camera and it turned out that they were best friends but neither knew the other had cancer. “Their culture discouraged them from talking about their illness,” said Cory. “Now they are each other’s support system.”

Other videos focus on the challenges of being a refugee. “What happens when advanced illness hits and you don’t know the language or the system and your family is spread around the globe?” asks Cory. “There are really powerful videos about what that means.”

One of the interesting things they’ve discovered since launching LivingMyCulture.ca is that people are watching the videos of other cultures, wanting to know what’s happening outside of their own. “In a way we are creating cross-cultural awareness,” said Cory.

Helping people grieve in healthy ways

The process of grieving after a person is gone Cory says, is often longer and harder than we expect. For that reason, they created MyGrief.ca, a site offering nine learning modules for people who have experienced the death of someone they care about. Inspired by personal loss, Cory says, “This is the tool I wish I had 25 years ago – it would have made a big difference in my life.”

Through sharing the personal stories of Canadians, MyGrief.ca is designed to help people grieve in healthy ways and gives hope that things will get better. The resource puts a premium on self-care. Modules to help parents, healthcare providers and others support grieving children will be released this fall.

Many sceptics told Virtual Hospice that grief support couldn’t be offered online, that it had to be face-to-face. The responses they receive from people prove that it can be done. “We are innovative and a bit disruptive,” says Cory.

“Virtual Hospice is truly a rare kind of organization,” said HIROC Senior Account Executive Tania Kowalchuk at a recent visit with Cory. “I’m awestruck by how passionate they are and proud that HIROC can support Shelly and her team in delivering such incredible service.”

But ultimately Cory and the team agree that it all comes back to supporting patients, their families and healthcare providers in ensuring quality care. Virtual Hospice is there when people need it most, a trusted resource, a hand on their shoulder in times of uncertainty. “It’s our users who say it best,” says Cory. “’I no longer feel so alone in this. Thank you for being there.’”

Michelle Holden is Communications and Marketing Specialist, HIROC

Award winners: In June both MyGrief.ca and Ask a Professional received innovation awards from the Canadian Foundation for Health Improvement. MyGrief.ca also received the Canadian Health Informatics Association’s Patient Care Innovation Award.