'A terrible shock': Man whose wife died calls for increased access to palliative care

Carleton University professor Paul Adamswhose wife Suzanne Szukits, a diplomat, died of cancer last September says there are a few things theywould have liked to know before she entered the final days of her life.

But because Szukitswas still getting chemotherapy (not to cure her, but to reduce her symptoms) they were denied access to a palliative care physician.

"You can't have any sort of treatment and also get palliative care at the same time as a practical matter in Ottawa," Adams told CBC Radio's Ottawa Morning.

"What she needed, and we needed, was a deep conversation about what to expect in the final weeks and months. As it turned out in our case, it was only five days."

No hydration, nutrition

Szukitshad breast cancer for four yearsand entered the finalstage of the diseaseabout six months before she died, Adams said.By that point, her breast cancer had metastasized to her skull,causing pressure, and she received chemotherapy in an attempt to ease her symptoms.

I think that if I had been prepared for that it would have made a difference.- Paul Adams, widower

Aroundthat time an oncologist referred her to a palliative care physician, but the couplelater learned shewasdenied access because she was receiving chemotherapy.

Months later and justfive days before Szukits diedshe collapsed in their home after preparing breakfast.She was taken tothe Ottawa Hospital's General campus, where Adams asked a physician to start hydrating her via intravenous. Szukitscould barely communicate.

The next day they met with a palliative physician, who told Adams that feeding Szukitswould only feed the cancer. The next day, after going home to feed their children, he returned to the hospital to find that his wife wasno longer being hydrated, either.

'A terrible, terrible shock'

"It was explained to me that this was a normal thing, but it was an absolute shock to me. I was utterly unprepared," Adamssaid.

"You have to understand, when you're caring for somebody with cancer, you've devoted years of your life to nurturing them ... and that came as just a terrible, terrible shock.... I think that if I had been prepared for that it would have made a difference."

There's a too-rigid separation between palliative care and other forms of active care.- Paul Adams

Adams doesn't think the decision was the wrong one, but he would have liked to know well beforehandabout what to expect.

And in therapy, first in a group for caregivers and later in a group for the bereaved, Adams said heencountered other people who didn't realize what they were in for. He heard of oncologistsreferringpatients to palliative care in vague terms, and that the patients didn't understand what it meant.

"I heard from one gentleman ... shockingly, whose mother, after that conversation, actually thought she was cured. She didn't realize that the oncologist was actually saying, 'We can no longer do anything for you and you're going to die'," he said.

Adams thinks more work needs to be done to inform people about what to expect at the end of their lives, and that not all forms of treatment should bar patients from access to palliative care physicians.

"There's a too-rigid separation between palliative care and other forms of active care," Adams said.

'Not just for the last days of life'

Nadine Valk, executive director of the ChamplainHospice Palliative Care Program, told Ottawa Morning Friday that the situation Adams and his wife faced is "unfortunately all too common."

"Palliative care is not just for last days of life, but so many people still think that that's what that means, so people don't get referred early enough," Valk said.

"And then there's also the confusion around this notion of active treatment and palliative care. And I think people confuse active treatment and curative treatment."

The confusion extends to medical professionals, she said.

"Palliative care and delivering palliative care and support is everybody's role in health care. Everybody should understand, within their scope of practice, how they can support somebody with a life-limiting illness... how they can have these difficult discussions," Valk said.

"The reality is most people don't need a palliative care specialist. They need their health care providers ... to understand a palliative approach to care and when to start that."

Listen to the interviews with Adams and Valk here.