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Megan_Wexler
Social worker Megan Wexler of the Princess Margaret Cancer Centre is the Program Lead for Healing Beyond the Body. (Photo: UHN)

A specialized volunteer program at the Princess Margaret Cancer Centre that was put on a "pandemic pause" is relaunching virtually to continue bridging the gap between clinical care and emotional support.

The program, "Healing Beyond the Body" (HBB), has been active since 2007 and was developed in response to research that showed trained volunteers could provide a proactive and non-stigmatizing way to support patients during their cancer treatment.

Since launch, they have grown from 21 volunteers to more than 100, and in 2019 alone provided support to 20,000 patients and caregivers across the Princess Margaret, speaking to the integral nature of supportive care for cancer patients.

"A lot of times, family members try to be a cheerleader to their loved one during treatment, but that doesn't always address the fears they are experiencing," says Megan Wexler, a social worker at the Princess Margaret and Program Lead for HBB.

"Our volunteers offer a non-judgmental sounding board — an extra layer of support to those who need it."

Pre-pandemic, volunteers would wander with intention through both outpatient and inpatient units at the cancer centre – striking up conversations with those who wanted to talk, and equally as important, never forcing their presence on those who don't. Topics of conversation can span from family history, current events, the individual's medical journey and even into fears of death and personal anxieties.

"It's very patient-directive," says Aditi Desai, a volunteer with HBB. "We approach them on their terms, and they have the power to take the conversation anywhere they want to.

"We can't change their illness or trajectory of disease, but there is a lot of power in connection – that in and of itself can facilitate healing. We share the emotional burden of the experience with them."

Aditi Desai
Aditi Desai joined HBB in January 2019 and has been a dedicated volunteer ever since. She’s excited for the program to continue virtually. (Photo: Brian Zheng Photography, provided by Aditi Desai)

The casual approach of the volunteers removes some of the barriers that patients face when accessing psychosocial support says Megan.

"There is still a stigma about accessing mental health," she says. "Sometimes when the person is not wearing a white coat it feels less threatening to seek support"

While the program has been on pause from the start of the pandemic, for Megan and her team it was an opportune time to reimagine the future for HBB.

On Monday, Sept. 21, they launched the virtual HBB. The program can now receive referrals via direct email, phone or via the Supportive Care referral form from any clinician who may feel their patient or a caregiver may benefit from additional emotional support, but doesn't necessarily need a mental health clinician.

Surveys to patients or caregivers help match them to the right volunteer, and they can connect with their volunteer by phone or video during a time they prefer. It remains patient/caregiver-directive, and there is no set time for conversations and connections to end.

"COVID has put a wrench in so much of everyone's lives, but I know the impact that our volunteers have," Megan says.  "Whatever we can do to help make this situation more palatable for patients and their loved ones – that's the goal."

Pandemic aside, both Megan and Aditi share the thought that virtualization would have been the next step for the program.

'Words don't need to be exchanged for support to be present'

"It can be a lot more convenient for patients and caregivers to access a virtual setting," Aditi says. "That way [in future] we can have a two-pronged approach in making psychosocial support more accessible to all."

With the virtual connections underway, volunteers are thrilled to start conversing with patients again, and with the powerful experiences Aditi has had through HBB, it comes as no surprise.

She recalls one particularly touching moment she had with a patient she interacted with in the Palliative Care Inpatient Unit who was facing a terminal illness

"I was apprehensive about going into her room because she was the age of one of my good friends, so it felt too close to home," Aditia says. "She asked me to meditate with her – we did a quick 15-minute meditation and then sat in silence.

"She said the quiet helped her ground herself and stopped her mind from racing towards the future.

"Sometimes as volunteers and people, we feel we need to do more and say more to help – but silence is a powerful communicator too. Words don't need to be exchanged for support to be present."

Read more about Healing Beyond the Body. Please email hbb.volunteers@uhn.ca or call 416-946-2000 ext 3311 if you would like to make a referral.

Healing Beyond the Body is made possible through the generosity of CIBC via the Princess Margaret Cancer Centre Foundation. 

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