His partner died waiting for palliative home care. Now he wants accountability

A Winnipeg man whose partner went more than five weeks without palliative home care before her death says he's filed a complaint with the Manitoba Ombudsman about the experience.

Eric De Schepper named the Winnipeg Regional Health Authority in the disclosure of wrongdoing form he said he filed with the independent government office on Wednesday after going public with his story last week.

His common-law partner, 62-year-old Katherine Ellis, died on Saturday after opting for at-home palliative care last month following a diagnosis of Stage 4 pancreatic cancer in November.

De Schepper said in the time between Ellis coming home in mid-January and her death this weekend, he was left to care for her without the home care that was promised when they left the hospital.

That meant his partner of a decade was left laying on the same bedsheets for weeks without more than a sponge bath because De Schepper couldn't help her out of bed on his own.

He said each time he asked his palliative care co-ordinator for home care, he was told they didn't have the resources to send workers.

"It's a disgrace. I don't know what to say," said De Schepper, 58.

"I'm speechless that this is happening in our modern society."

Tara Lee Procter, regional lead for Winnipeg Regional Health Authority Health Services — Community and Continuing Care, said she requested on Wednesday "a full review of the circumstances of this situation, along with our scheduling and management processes so that we prevent similar situations from happening in the future."

"The WRHA Home Care Program provides an incredibly valuable service to our community with care delivered by committed and compassionate professionals," Procter said in an emailed statement.

"This situation nevertheless highlights that we need [to] — and must — do better."

Manitoba Seniors and Long-term Care Minister Scott Johnston confirmed Wednesday that the Winnipeg Regional Health Authority will conduct an investigation.

"I think it's unacceptable," Johnston said, adding that Health Minister Audrey Gordon feels the same way.

"There is an investigation that's taking place as we speak to determine where the system fell down, and again certainly that's a situation that no one condones, including our government."

David Kuxhaus, manager of investigations for the ombudsman, said in an email the office can't identify complainants or provide details about their matters.

Kuxhaus said the forms complainants fill out helps the ombudsman in its assessment of "whether it is [a] matter under our jurisdiction that we could resolve informally, or if it requires further review by our office."

He added wrongdoing does not include "routine operational or human resource issues."

Home care finally sent — after death

After weeks of waiting for help, De Schepper said it finally arrived this week — three days after Ellis died.

While the WRHA told him last week that they'd been able to arrange home care for him  — after he came forward with his story — he said he informed the entity twice over the weekend that he would no longer need it since his partner had died.

Still, a home-care worker showed up Tuesday morning, followed shortly after by a truck delivering medical supplies.

"To be honest, it felt like a slap in the face," De Schepper said.

"I find that a little bit silly, because that home-care worker could have been sent to another family which could have used their services far better than, well, a deceased person.

"My question is: are these departments even communicating to each other? Or what's going on here? None of this makes a lot of sense, to tell you the truth."

After De Schepper came forward with his story last week, he said the WRHA delivered supplies including a hospital bed and air mattress. While that was helpful, his partner only got to use them for one night before she died.

"What they did not provide was what was really needed: human resources, home care workers, respite workers. That came all way too late," he said.

Mourning a loss, pushing for change

De Schepper said he filed the report with the ombudsman because he wants to see accountability for what happened to his partner — and changes so this doesn't happen to other people.

"This is an issue that affects everybody in Manitoba: you, me, your children, your parents, your grandparents," he said. 

"I find it unacceptable that we do not receive the home care that we require."

And as his family plans a memorial for Ellis for later this year, they're still grieving the loss — and thinking about how things could have been different.

"I feel traumatized. Other members of my family expressed the same concerns. They feel victimized, they feel traumatized," he said.

"We are of the opinion and understanding that if Katherine would have received the resources that she so badly needed right away from the beginning in the first week, that the stresses and the trauma put on this family would be a lot less.

"Katherine would have had … during her few remaining weeks of life, a far better quality of life than she received."