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UHN Dietitian, Heidi Wilk met her husband in school while he was studying to become a physician and she was finishing her degree to be a clinical dietitian.
For years they saved and dreamed about one day being able to buy a house in mid-town Toronto where they could start their lives together.
All their hopes and dreams were finally starting to come true. Heidi's Husband, Matthew was finished his medical residency and set to start a fellowship in his field of OBGYN and Heidi was hired as a Dietitian at Toronto Rehab. They bought their dream house, started having children and settled into the high life. Heidi jokes by saying, she started to feel like she was "finally keeping up with the Jones's".
It all ended June 27, 2008, when Mathew had a seizure.
After waiting in the emergency room, the 32 year old was told he had a 10cm size brain tumour and that it was cancerous.
From that point on Heidi and Mathew's life changed forever. For Heidi, not only did it change her life as she knew it, it changed her whole perspective on patient care at Toronto Rehab.
All of a sudden Heidi was now the caregiver of a very sick patient and she saw things from a very different angle.
"I don't wish this on anybody, my whole life was turned upside down and at times I felt very lost and alone," said Heidi "It is a very scary experience especially for a young couple alone in the city with very little support".
Not forgetting the caregiver
Heidi learned so much about what it is like to be a patient in our health care system from her experience with her husband.
"I remember sitting in the room getting the initial diagnosis," said Heidi. "We were surrounded by a team of five health care workers throwing information at us along with papers and binders that I have yet to look at. It was like an episode of Charlie Brown and the teacher was talking to me in that language no one understands."
Even though both Heidi and Matthew had extensive medical knowledge, they still needed to be walked through the treatment process and needed compassion due to their emotional state.
For Heidi, It helped her realize that although clinicians talk about empowering patients, we still need to provide them with as much support as they need. In Heidi's words, "empowering comes later, after the initial shock has gone down and after people adjust to their new normal."
As a clinical dietitian, Heidi works with a number of patients and caregivers on a daily basis. Since Matthew's diagnosis, she has become a more patient health care worker and is willing to share her own experiences, if appropriate, to help patients feel comfortable.
"Sharing my experience of what it's like to go through a life changing diagnosis can build a more empathetic relationship with my patients."
In some cases health care workers might shy away from sharing emotion with patients because it is difficult to do within time constraints, and staying within professional boundaries. In Heidi's case, she feels like it is necessary to understand where a patient is at, their situation, and what is restricting them from meeting their goals.
The way we speak to patients
Heidi has learned the importance of positive messaging and phrasing, and how makes the world of difference to patients and caregivers.
"Words like 'can't, won't, never and stop' can literally kill a patients hope," said Heidi. Sometimes we might not realize the way some of words could set patients back emotionally."
At one point, Matthew was told he could no longer drive or work. The way it was communicated was devastating. This experience reminds Heidi the importance of involving patients in big decisions and to understand the impact it might have on their day to day life. "For us it was always important to live as a normal a life as possible," said Heidi.
Involved in the discharge plan
Heidi's goal is to help patients reclaim their independence.To do this she tries to involve herself more in the discharge planning process and always includes the caregivers.
"It helps me understand what obstacles the patient and the caregiver will experience when they leave," said Heidi. "I no longer look just at the disease and the diagnosis; I look at the specific person and their circumstances."
Living through this experience with Matthew has changed the way Heidi looks at her patient relationships. Although she wouldn't wish this on anyone, she feels like she's changed her for the better.
"I am stronger, more considerate and grateful for every moment I have to spend with my family" said Heidi. "I absolutely hate cancer, but I love how it has changed the way I relate to patients"