Supporters say family caregivers need formal role in hospitals, long-term care

Sault Ste Marie Area Hospital volunteer Louis Ferron says he's seen firsthand how family members face barriers in helping care for loved ones in hospital–often when they're most needed.

Ferron is a patient and family advisor.

He says the healthcare system needs to change.

Ferron says hospitals are short-staffed and family caregivers have a bigger role than ever in improving care.

That was driven home to him during the COVID-19 pandemic, when he was contacted by a daughter and mother of a patient in a Sudbury hospital who was in the final stages of life.

They wanted to be there but the hospital was in lockdown and they were denied access. 

It's a matter of educating people to accept caregivers as part of the health team.- Louis Ferron,  patient and family advisor, Sault Ste Marie

Ferron says they had written a compelling letter to the staff on the hospital floor to no avail.

That's when Ferron came  up with a plan.

"I said you need to send it up to the top of the ladder," he said.

"So I looked at the hospital website in Sudbury and I looked at the important people that make decisions and through that, within four hours, she and her mother were able to go see their loved one."

Ferron advocates for caregivers and is fighting to have them recognized for the unpaid work they do in improving care.

As the anecdote shows, Ferron believes change must come from the upper echelons.

"It's a matter of educating people to accept caregivers as part of the health team," he said.

"The people at the top make decisions. The people at the top make policies, but then it's a matter of getting those decisions and those policies to trickle down to the front line. And if that doesn't happen, nothing's going to happen in helping caregivers." 

That help includes having medical staff recognize the value of involving family members, communicating with them and understanding what they can do, although he says the system seems daunting to many caregivers who turn to him for help in navigating it.

Ferron is proud of a program introduced at Sault Area Hospital where designated caregivers are issued a badge identifying them and making it easier for them to be recognized and respected in the hospital.

He'd like to see a similar type of recognition program built into the Sault's long-term care facilities but admits not every facility welcomes the idea.

Ferron has also worked with the Ontario Caregivers' Organization (OCO) on developing initiatives like the caregivers' ID program.

That group has recently launched more support for family caregivers in acknowledgement of the increasing demands they face.

Amy Coupal is the CEO.

She says there are four million caregivers in the province who provide vital care, but who have to fight to do so.

"One of the things we hear from caregivers so often is about repetition, having to repeat themselves, to validate themselves, to share what they know or the role that they play," she said.

"And if we can reduce a little bit of the fatigue that caregivers sometimes feel by saying, 'I know you're the caregiver, you're in my file, you're documented, we have the process to recognize you, and here you are. Let's just dive in together as a team to work on where we are and where we're going.' That can make a huge, huge difference."

Coupal said the organization's annual report found 67 per cent of caregivers surveyed said they felt burnt out but had no choice but to continue and more than 40 percent felt depressed.

As well, she says in addition to mental health stress, the financial burden on caregivers needs to be addressed as they struggle to hold onto jobs while providing care or pay out of pocket for help to care for a loved one.

She said those physical, emotional and financial issues are huge concerns that the organization is trying to address.

Coupal said the organization provides direct support to caregivers in the form of peer support, information and resources, as well as coaching and counselling.

She said they also work with hospitals and long-term care homes to recognize the role of family caregivers.

The OCO recently launched its Essential Care Partners Support Hub to improve its level of support to all parties.