Present With Suffering

On Sept. 16, 2024, Shelagh Keesmaat’s father, John, surrounded himself with everything he loved: family, sunlight and Sinatra.Outside on the Princess Margaret Cancer Centre’s patio, he walked a final lap with everyone, posed for family photos and smiled broadly. He was ready. After eight-plus years of cancer treatments, a tracheotomy and pain that had become unbearable, he chose a planned, peaceful goodbye through medical assistance in dying (MAID).

“We were all there,” Keesmaat recalls. “There was so much peace for us as a family because everyone came together to be with him. And I think it gave him immense relief to know there was a planned end in sight.”

That kind of emotional clarity and calm doesn’t always accompany death. According to Maxxine Rattner, a professor at York University’s School of Social Work, we often overlook an entire category of end-of-life suffering: the kind you won’t find on a typical medical chart.

Rattner’s research explores what palliative care professionals call “non-physical suffering” – a tangled web of fear, grief, loss of identity and emotional pain. It includes the dread of being a burden, mourning the future or feeling pressure to “die the right way.”

In fact, Canadian data shows that 35 per cent of MAID requests cite psychological pain – emotional distress, anxiety, fear or existential suffering – as contributing factors. While many people may think about dying as a purely medical issue, there’s so much more going on below the surface in someone close to death.

Keesmaat’s father never said he felt like a burden. But his actions hinted at it. “He didn’t want to interrupt our lives,” she says. “He’d say, ‘You didn’t have to come all this way,’ and try to send us home after 20 minutes.”

Yet during his final weeks, something shifted. 

“He stopped trying to protect us,” she says. “He let us stay.” That vulnerability, Rattner says, is often key to a peaceful death. But getting there takes psychosocial care.

The problem? It’s often the first thing to be cut. 

“We lack training specific to non-physical suffering,” says Rattner, who works with front-line palliative care teams. “Social work and spiritual care are often understaffed and under-resourced.” 

Without that support, patients and families are left to navigate complicated emotional terrain alone. Rattner’s research shows that even clinicians feel helpless – expected to relieve suffering they aren’t always equipped to fix. They need support too.

Sometimes, though, the best care isn’t about fixing anything at all.

“In palliative care, we talk about bearing witness,” Rattner explains. “But sometimes, just staying present with someone’s suffering is the most human, most radical thing we
can do.”

Keesmaat believes her father got that kind of care. On his last day, he hugged every family member, told the doctor he’d had “the best” life, played Sinatra’s “Young at Heart” as his final send-off – and died with dignity.

“Dying well isn’t just about managing pain,” Rattner says. It’s about making space for the full emotional reality of what it means to say goodbye. “My work tries to expand that view.”  ■