Specialists call for spending to ease palliative care 'emergency'

A Fredericton palliative care specialist says the province needs more people to respond to the growing number of patients who need palliative care.

"To me it's an emergency," Dr. Jennifer Gillis-Doyle, who has worked in palliative care for more than 10 years, said Friday.

"The care that patients are receiving right now is unacceptable in many cases, and it needs to change — yesterday."

On Thursday, the Liberal government said it was working on a plan that would allow dying patients in urban and rural areas better access to palliative care.

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The Health Department announced a "person-centred care and integrated services framework" that's supposed to lead to "action plans, policies, programs and services."

The goal is a more team-based approach, including more trained doctors, nurses, pharmacists, social workers and personal support workers, the department said.

Coverage 'spotty at best'

Gillis-Doyle said she's been looking after the needs of dying patients by herself at their homes, in hospital and at the hospice in Fredericton. She also serves patients in communities from Harvey to Jemseg. 

She said she's the only doctor specializing in palliative care in the region.

But with more resources, such as family doctors, physicians nurse practitioners, she said, she would be able to do more home visits.

"We need more people," said Gillis-Doyle. Coverage now is "spotty at best," she said, but she thinks the new framework will allow caregivers to serve more people across the province.

"That's probably the biggest thing that is lacking right now — I can't get out and see people. They have to come and see me, I'm just too booked."  

Gillis-Doyle used the example of a patient who would have to travel from above Hartland to see her in Fredericton.

"He has pain every time he sits, so to drive that road in pain was unacceptable."  

She said his pain was handled poorly, and he was in and out of hospital three times in the last two months.

When he was finally able to see her, Gillis-Doyle made changes to his medication.

"For the first time, he left that office feeling like there was hope," she said.

"Yes, he has a terminal illness, yes he will die of this illness sometime in days and months to come, but he doesn't have to experience that excruciating pain every single day."     

Gillis-Doyle said she should be able to travel to patients' homes, instead of having patients drive three hours in some cases to see a specialist.

"If I'm going to drive up to Hartland, I need to know there's physicians available in Fredericton to see the patients that are in the hospital and in the community," she said.  

"We all have a story about a birth … I want people to have a good story about the death,"

In desperate need of a plan

Gillis-Doyle describes palliative care as a triangle, with patients diagnosed with a terminal illness at the base. And it's getting wider.

"That's why we need a plan now," she said.

During the announcement Thursday, Dr. Pamela Mansfield, a palliative care specialist in Moncton, was thinking about patients whose experience near the end of their lives could have been better had she been able to see them sooner.

"When you look back you think, 'OK, you've been suffering for the last three months and you didn't need to be," she said.

If this palliative team becomes a reality, then that's going to be just the best way to provide ongoing, sustainable palliative care to patients and not just end-of-life care.-Dr. Jennifer Gillis-Doyle

"Now it's a time where you're closer to the end and all the interventions I could've done, it's too late.

"Yeah, I can keep you comfortable for your last days but you could've had a great last three months."

In Moncton, Mansfield said there are lots of palliative care resources, but they don't have as much access to nurses, social workers or pharmacists trained in palliative care.

The new framework will allow patients to know exactly who to call and what resources are available to them, something professionals have been discussing for years.

"The need for a palliative care specialty team to support the primary care team is so important," she said.

"If you don't have that, a lot more complex cases don't have proper treatment or control."

Under the government's plan, an advisory committee, led by the New Brunswick Cancer Network, will be set up to develop an action plan. The committee will be composed of representatives from palliative care, health care and the community.

No timelines attached

Government's timeline and the costs were not available.

Although she wants the framework implemented as soon as possible, Mansfield said it's important to do it right.

She wants to see improvements in five years and the new teams completely implemented 10 years down the road.

Meanwhile, Gillis-Doyle is optimistic momentum will continue between the province and professionals.

"The government is recognizing that all of these patients, no matter where they live, deserve a level of care that's above and beyond what we currently offer," she said.