Winnipeg man laments “degrading and dehumanizing” lack of palliative care at home for partner
When Katherine Ellis decided to come home for palliative care last month after being diagnosed with stage 4 pancreatic cancer, she thought she would be comfortable and spend her final days surrounded by loved ones.
Instead, the 62-year-old Winnipeg woman lies in the same sheets for weeks without more than a sponge bath because promised help never arrived, her partner for a decade has said.
“The Winnipeg Regional Health Board has been unable to provide emergency workers or home care workers despite many promises,” Eric De Schepper, 58, said Thursday.
De Schepper said that for nearly five weeks this has meant that caring for his partner is left to him alone, although he cannot help her out of bed or give her a full bath alone.
He said he asked their palliative care coordinator weekly for the couple of days of home care they should be getting and a couple of half-days of break work so he could get a break – and was told they didn’t have the resources to take workers to send.
“I want to ask everyone, challenge everyone, how would you feel after being treated like this for four weeks? It’s just demeaning and dehumanizing,” said De Schepper.
A cancer support organization he contacted was able to hire home nurses on Wednesday to bathe and nurse Ellis for a few hours, but De Schepper said support was limited. Still, that day made the difference for his partner.
“She had a smile on her face, something I haven’t seen in a very long time,” he said. “But beyond that, the system itself, the state health department, has totally failed.”
Shortage of staff: union
The leader of the union, which represents more than 14,000 healthcare workers in the Winnipeg Regional Health Authority and Shared Health, says she would not disagree with De Schepper.
“I think this government has let people down with the healthcare system because they don’t have enough local people to take care of people at home,” said Debbie Boissonneault, the president of CUPE Local 204, in an interview on Thursday.
Boissonneault, a health worker by trade, says she’s been with families at the end of their loved one’s life and it’s very hard for people at the best of times.
“Everyone has a right to healthcare and I think it’s important that someone is in their own home at this point,” she said, adding that she hopes De Schepper gets that help.
A WRHA spokesman acknowledged there remained a shortage of home care workers and said the agency recognizes the important needs of palliative care patients.
The spokesman said in an email Thursday that the WRHA is prioritizing bottling services as soon as possible to support these patients and their families at home.
Measures came “much too late”
Ellis was a Winnipeg Transit driver for about 15 years before she was briefly disabled when she began to develop health problems, De Schepper said.
She was diagnosed with cancer in November but her last hospital visit was in December when she was rushed to the emergency room with diabetic shock.
De Schepper said she was told surgery wasn’t an option and chemotherapy wouldn’t prolong her life at this point, so Ellis decided against it.
De Schepper initially worked alongside caring for his partner as a school bus driver, but found this month that he would need to take a leave of absence and apply for care allowance from employment insurance to properly care for his partner.
During an interview on Thursday, De Schepper said he received a call from the WRHA telling him they were finally able to find a laborer for him. But since he said Ellis probably only had a week or two to live, that wasn’t much consolation — and it didn’t even solve the home care issue.
“The only thing we can do for her now as a family and as a caregiver is to make sure she’s comfortable, make sure she’s pain-free and surrounded by her family,” he said, including her three sons.
“Everything that comes now is just too late.”
And while De Schepper knows Ellis’ illness means they won’t be able to spend their retirement together as planned to travel the world, he said the worst part of all was how they were treated by the healthcare system, which should help them .
“The system failed her badly in her final hours of need,” he said.
De Schepper said he wants to speak up if it helps change things for someone else.
“That’s my hope: that I’m this one guy standing on top of a mountain and throwing a pebble — and eventually triggering an avalanche,” he said.
