Palliative care isn't just for the dying: Demystifying what it means to get help

When Despina Liberopoulos-Shousha first found out that she had stage four lung cancer and needed palliative care, her first thought was, "But I'm not dying."

"The stigma of palliative care is it's your final days and it's the last place you can have the best quality of life," she said. "You're dying and it's just a matter of time."

The mother of two says when doctors found her cancer in February 2022, it had already metastasized to her brain, bones, liver and abdomen.

"I was shocked because I'd never been ill, I'd never been hospitalized," she tells CTV News. "I was totally taken aback."

Since then, the cancer has spread to her pancreas, the lining of her gut and her adrenal glands.

The Beaconsfield resident admits that every now and then she throws herself a "pity party" and then picks herself up to face her new life head-on -- with the support of doctors and caregivers at the McGill University Health Centre (MUHC) palliative care department.

"I don't like to look at it like it's not good," she said. "As long as they can continue to find treatments for me, then I'm in the game, and as long as I'm in the game, I'm fighting the fight and I have a very positive attitude and I don't let any of this get me down."

She says palliative care has helped her mostly with the physical side effects of her treatment.

"If you're feeling good physically then you're feeling good mentally and you can face the challenge," she said.

Am I dying?

Dr. Justin Sanders, the director of Palliative Care McGill, says the number one worry people have when they are referred to him is: am I dying?

He notes palliative care, which is offered when someone is diagnosed with a serious illness, often gets confused with hospice care, which is comfort without curative intent.

Sanders classifies "serious illness" as a grave diagnosis -- but not one that necessarily means death is imminent.

"Palliative care should be provided alongside 'active treatment' or disease-directed treatment in order to get the best outcome from that treatment," he tells CTV News. "When studies compare people who get palliative care versus those who do not, the people who get palliative care are, on average, likely to live longer."

Dr. Justin Sanders and Despina Liberopoulos-Shousha. (Coalition Québec pour l’accès aux soins palliatifs)

Sanders notes palliative care helps people take care of their physical ailments, have it be nausea or other maladies associated with their illness or treatment.

Additionally, some of the most important work his team does is taking care of people's emotional and mental states.

"Sometimes it's the existential concerns about what comes next after we die," he said. "When we don't create space to talk about those things, we leave people to suffer alone."

Improving quality of life

Sanders notes he strongly believes that with proper palliative care, people are less likely to fall into distress or ask for medical aid in dying (MAID).

"Quebec has the highest rates of medical aid in dying in the world," he tells CTV News. "I don't think it's unrelated that people bring to their illness experience a lot of fear about what it means to die, and there are a lot of perceptions that dying is a process characterized only by suffering."

The irony of facing death, Sanders adds, is that people can still thrive.

"It's not uncommon that we hear people say, at the end of a year of cancer treatment, or as they approach the end of their life, 'this last year was the best year of my life,'" he said. "I think something that we're all striving for in our lives is how to make meaning of what it is that we're going through."

Sanders says with the integration of Santé-Québec into the province's health system, he hopes to bring the importance of palliative care to the forefront of people's minds.

"There's an enormous opportunity for them to integrate palliative care," he said, adding that every Quebecer has a right to seek help.

"If you have a serious illness and you don't have access to palliative care, then you really don't have access to the best care," he notes. "It's really important for people to advocate for themselves and for their loved ones, and make sure that they have access to palliative care."

Palliative care as an umbrella

Sanders recalls a colleague of his who once perfectly articulated a simple way to explain palliative care:

"Palliative care is the umbrella, not the rain. What we know is that when the rain comes, if you're stuck out and you get soaked, and someone gives you an umbrella, then it's really too late," he recounts. "But if you have that umbrella early and you can carry it alongside you unfolded, then when it starts to rain, and you can raise that umbrella, you can stay dry."

As she continues persevering, Liberopoulos-Shousha has some parting words for anyone diagnosed with a serious illness: "Get in the system...If you need anything, they'll be there for you."

"Cancer has really made me stop and think about a lot of things," she said. "[It has] given me patience and humility and I know there's a lesson here."