Elke Hutton is one of 12 Canadians who make up the CMA’s Patient Voice — a new liaison group that will bring insights from patients and their families to the CMA’s work. Mrs. Hutton is from Shellbrook, Saskatchewan, and has more than 30 years of experience in the health care system — as a patient, caregiver and patient advocate. She talked to us about the lessons she learned caring for her dying husband and the health care challenges facing rural seniors.

You were your husband’s caregiver and advocate while he was sick. What challenges did you face?

My husband passed away from chronic obstructive pulmonary disorder (COPD) in April 2017. He was 67. He spent the last year of his life in a long-term care facility because he was bed ridden. He was there because rural Saskatchewan did not have funding and support staff to allow him to remain at home. Our home was ready for him. I remodelled with his needs in mind and we had everything he needed, except access to home care support, so he was forced to go into long-term care and we were separated.

At the long-term care home, we had a distinct plan of what was going to happen for palliative care and asked that he be sedated because he didn’t want to suffer. When the time came, he went into an acute phase and his death was not controlled as well as it should have been. Everybody could have done better.

I’d been involved in patient advocacy for a long time, and because I was plugged in, I knew where to go and who to speak with to address the changes that needed to be made. My family doctor stepped up and started to overhaul the palliative care system in our town. She got a grant and we put together a palliative care handbook — we wrote the whole thing together.

In your experience, what’s it been like for seniors to access care in a small town?

My husband and I lived in Richmond, BC, for over 30 years and we knew what the health care system can provide. We had no idea how bad it was in rural Saskatchewan until we experienced it first-hand. The worst issue is a lack of physicians and the burnout for the ones struggling to hold down the fort. Seniors care is less than adequate. Geriatric specialists or extensive training in geriatric medicine is needed to juggle many complex medical issues. The system needs to change, but so does patient behaviour. Patients need to understand their role in the system. They must be taught what the limits are — when and where to take matters into their own hands and when to be responsible for their parts of the health care system — and not just say ”you fix me” to the doctors.

How did your husband’s health care experience spur your interest in Patient Voice?

I can speak about his experience and ensure his story does not happen again, and ensure the holes are plugged and pitfalls avoided. I’ve had a lot of my own health care issues over the years, so I’m aware the system is not perfect, but I’ve worked at becoming an empowered patient and learned to take my health care into my own hands and be discerning about what I actually need. I had to become my own and my husband’s advocates – and that’s what I think the CMA’s Patient Voice is all about – it’s a wonderful platform.