Managing within the health care system


I’m on the Patient & Family Advisory Council at Cancer Care Ontario as well as for the Regional Cancer Centre here. In Canada we’re behind with patient-centred care. Somehow over the years we’ve given over our care entirely to healthcare providers and that’s not right, it shouldn’t happen entirely. Yes they’re trained, they know better but I know my body as well as anybody and I want a say in how my medical journey goes wherever it is. I’ve always had that with my family physician, she respects people. I think that hasn’t always happened. It certainly doesn’t happen in the medical profession always. it’s not all of them for sure, not all oncologists and not all nurses, but it requires a huge culture change and it doesn’t just require a culture change on the part of the healthcare provider, it requires a culture change on the part of patients. You need to be responsible for your care, so if you are ill you need to do something about it and then you need to share in the care and the treatment if that happens and for cancer patients that’s extraordinarily important. People have the right to refuse chemotherapy, they have the right to refuse radiation if they want to. It may not always be the sensible choice but the point is they have the right to do it. What the healthcare providers need to do is to make sure that the patient and family has the information they need to go ahead and make their decision and then to help them make that decision, to make the right decision and to make it through. I know people who have refused chemotherapy when it was recommended, and again that’s a personal choice. Some people look at it as toxic. It is toxic. Radiation is toxic and nobody was meant to have that kind of radiation put in their body but it’s better than dying because that’s the alternative as far as I look at it.

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