The online series A Good Death is a CBC News co-production with students from the Graduate Program in Journalism at Western. | MORE

Matthew Bankert couldn't speak and wasn’t able to tell his mom when he was in pain.

One day, while sitting in his wheelchair in the family’s Port Colborne, Ont., living room, 13-year-old Matthew let out a terrible scream. “The contents of his stomach had emptied through his [feeding] tube site. It must have been absolutely, incredibly painful,” said his mother, Cathy Bankert.

That's the day that Bankert panicked and called for help.

When he was three-and-a-half years old, Matthew was diagnosed with Sanfilippo syndrome — an inherited, degenerative metabolic disease. Doctors told his parents that his younger sister, Kerrin, was also affected.

Matthew and Kerrin were slowly dying but Ralph and Cathy Bankert, wanting to keep their children comfortable and in familiar surroundings, chose to care for them at home.

“Nobody else was here. …I didn’t really know what to do, or who to call,” said Bankert. Kerrin and Matt Bankert. Matt died in 2005 of an inherited degenerative metabolic disease. His sister, Kerrin, died of the same disease in 2007. Courtesy of Bankert family

A friend connected her with Dr. Christine Newman, a pediatric palliative care physician at the Hospital for Sick Children in Toronto.

“Within a week they were out here doing a home visit, in Port Colborne, from SickKids. You know that feeling of panic when you’re dreaming and you’re falling? You don’t know what you’re going to do, and you wake up, and that relief? That’s how it was,” she explained.

While the Bankerts had a pediatric palliative care team they could count on, the staff and hospital were two hours away. If their children needed urgent, specialized care, they had the choice of driving to the local emergency room or roughly 150 km to SickKids, in heavy traffic, with two special needs children.

There are children and families in Canada that don’t have many options, whose needs are not adequately addressed by the healthcare system.

“Many children are forced to die at SickKids because we’re unable to find the resources in their community to help them achieve a so-called “good death,” said Dr. Adam Rapoport, a pediatric palliative care consultant with the Max and Beatrice Wolfe Centre for Children’s Palliative Care and Grief in Toronto.

Adults are in need of palliative care across the country so expertise is usually available for the elderly, no matter where they are, Rapoport explained.

For children the funding varies across Canada and there aren’t enough resources.

Access to pediatric palliative care is significantly limited in that there are fewer facilities and fewer medical professionals equipped to provide end-of-life care to children, said Dr. Gerri Frager, medical director of the Pediatric Palliative Care Service at IWK Health Centre in Halifax.

“I find [it] distressing that there really isn’t a base minimum standard [of care] that every child and family could access,” she said. “I think it’s a real deficit in our healthcare system that every province is incredibly varied in the support they provide for children in these circumstances.”

The level of care varies not only nationwide but within the provinces as well, Frager explained. Children who live in the northern part of a province often can’t access the kind of care available in the southern regions.

The IWK pediatric palliative care team is the only one of its kind in the Maritimes and Kimberley Widger, a registered nurse who worked there, said when Frager isn't available, the back-up is a medical team in Montreal.

Most parents prefer to take care of dying children at home

The children Frager’s team cares for travel great distances to receive treatment and those who require care at home don’t always get the same level of care they would receive at the hospital. Depending on where the child lives, Frager said some medications and medical equipment, like patient-controlled analgesic pumps, necessary for home care, aren’t always covered by provincial health plans or insurance.

The hospital looks for private donations to cover the costs for home care, but without funding, Frager said some children do not have what is needed for a comfortable home death.

Dr. Mark Greenberg, medical director of the Pediatric Oncology Group of Ontario, said inadequate home care is a significant factor in evaluating the current state of pediatric palliative care in Canada. “Various studies have demonstrated that for many parents, the preferred place of death would be the home — and in many instances, that is not possible because of resource and comfort issues.”

“Grief support, bereavement counseling, … things like massage, art, music, play, and dance therapy — all of that is funded privately,” Rapoport said.

Despite the limitations, Dr. Hal Siden, medical director of Canuck Place Children’s Hospice in Vancouver, said Canada is in a good position as a leader in pediatric palliative care. “You go coast-to-coast and all these teams have elements of expert medical consultants, advance practice nurses and psychosocial practitioners. When you look at the U.S., they don’t have the hospice model and they’re just getting started with what [pediatric palliative care] teams will look like.”

He said the expertise available coast-to-coast can play a significant role in advancing the current state of pediatric palliative care in Canada. The ideal, according to doctors, is a hub-and-spoke model of care. Doctors from pediatric palliative care programs can partner up with pediatricians, adult palliative doctors and hospices in smaller communities to provide care to children dying at home.

The Bankerts who cared for two dying children at home, didn’t do it alone. They said their pediatrician, nurses and personal support workers in the community connected with the palliative team at SickKids. In the end, their children were able to die comfortably at home.

“Caring for two children with special needs, without support, is pretty impossible,” said Cathy Bankert. “We did it because we had help.”