Hamilton-made podcast takes aim at empowering patients with terminal illnesses

Time and time again, palliative-care physician Samantha Winemaker says she kept arriving at the same place.

Coming in at the eleventh hour," the Hamilton doctor would often find patients and families were still in the dark" about their illness journey, despite how close they were to the end of their lives.

Some didn't have a good understanding of where they were in their illness, while others didn't know how close they were to death - even after years of treatment and appointments with other specialists.

It was really alarming," said Winemaker. Then, I would sit there and untangle all of it for them because they feel lost, anxious and often dumped and passed off at the end."

A new podcast, created by Winemaker and Hsien Seow, a palliative-care researcher at McMaster University, is aiming to change the storyline" and empower" patients and families in the face of a serious illness.

Titled The Waiting Room Revolution," the podcast explores the seven keys" Seow and Winemaker have created - after nearly half a decade of brainstorming, research and interviews with patients and families - to help patients unlock a better experience," said Seow.

The keys" include preparing for different outcomes, tailoring their care plan to their preferences, playing an active role in connecting the dots" of the health-care system and encouraging patients and families to invite" themselves to the conversation with doctors about what to expect.

Winemaker said with those skills - and the know-how of implementing them - the hope is that patients will get the care they need that matches where they're at in their illness."

We want to make sure that people have an opportunity to feel more in control, empowered and activated so that they can go through their illness journey in the spirit that represents them as a person," she added.

But the podcast extends beyond changing one's trek through illness, said Seow. They're also hoping for systemic change through families wanting to take a front seat" along the ride.

If enough people start asking questions and feeling empowered, Seow said patients and families can be a big force" in changing the system - which Winemaker said can often be clouded by health-care providers who can be uncomfortable" when talking about terminal illness.

Patients and families can be the armies to demand change," he added. If they start asking all these questions, it's going to be hard for us to keep avoiding."

And the podcast isn't about dying, said Winemaker.

It's about living better throughout an illness journey," she said. And journeying through well-known and well-documented illnesses with a large dose of reality."

The podcast can be found at WaitingRoomRevolution.com. New episodes are released every Tuesday.

Fallon Hewitt is a Hamilton-based reporter at The Spectator. Reach her via email: fhewitt@thespec.com