Reframing the patient illness journey through education and empowerment

It can be easy to get lost while navigating a life-changing diagnosis. With so much change, patients and their families can struggle to focus on the big picture of their illness journey.

Palliative care providers, like Dr. Samantha Winemaker, help patients untangle the confusing realities of their diagnosis and provide the information they need to empower them on their journey.

As an associate clinical professor in Department of Family Medicine at McMaster University, Winemaker has been advocating for improved patient care for decades.

“To improve the whole process, you must improve the beginning. That starts with distinguishing between chronic illnesses and those that are truly progressive and life-limiting,” says Winemaker.

Progressive diseases, such as certain lung conditions, heart diseases and various cancers, have a known roadmap from the moment of diagnosis. “We should be able to invite patients and families to know more about their illness — when they’re ready to know,” says Winemaker. Patients can use that information as a roadmap to understand the main milestones and big decisions that will need to be made over time.

Patients need to know how to seek information and health-care providers need to know how to provide it. “Information is power,” says Winemaker, adding, “when patients get their diagnosis, they feel suspended, and information will help them get their feet on the ground.”

Sharing information is a significant part of Winemaker’s advocacy. Together with her co-host and co-author Dr. Hsien Seow, a professor in the Department of Oncology at McMaster, they have reached thousands through their talks, podcast and new book.

As much as the duo want to inform and educate patients, they also want to see substantial changes to the health-care system — changes initiated by empowered patients asking questions and taking a palliative approach to their illness journey. “We’re preparing a new kind of patient and family to be respectfully assertive in their health-care journey, and to be co-piloting their illness with their health-care provider,” says Winemaker.

“We thought a podcast was the fastest way to get this information out there,” says Winemaker. Their podcast, the Waiting Room Revolution, shares stories from health-care providers, patients, researchers and caregivers to better prepare anyone facing a progressive, life-limiting diagnosis. The podcast is a global hit, placing in the top 1.5% most popular podcasts (according to Listennotes.com, a podcast search engine).

The pair have also been making waves with the launch of their new book, Hope for the Best, Plan for the Rest: 7 Keys for Navigating a Life-Changing Diagnosis. The book, which launched September 19, serves as a guidebook, full of information, types of questions to ask and exercises — all to better prepare patients, their families and caregivers for the journey ahead.

To Winemaker, the podcast and book are not just complimentary but a necessary part of providing health care. The interactions she has with patients provide inspiration for the messages she wants to share with her audience online.

“Being with patients is the breath in my lungs, but what comes out of my mouth is the revolution. I couldn’t do one without the other. I need to be with patients and families, but I also need to be also setting fire to a citizen facing revolution,” says Winemaker.