“We are all people at the end of the day “
Words of a local Waterloo Wellington Physician
I met this woman, Anne, after she had been admitted to hospital for severe shortness of breath resulting from a diagnosis of lung cancer. I soon found out this was one of many such trips to the emergency department for this terrible symptom. Although this diagnosis would be an incredible shock for anyone, for Anne who was a non-smoker, had been physically active, and otherwise healthy, it was devastating. When I asked about how she managed at home, she let me know she was too short of breath to move around the house very much and although her Mother was supportive and always accompanied her to appointments, her common law partner didn’t spend time with her when he wasn’t working and the relationship between him and her family was strained.
As she began to share her illness story, and despite all that she had been through because of the extent of her disease, it became clear she had a limited understanding of her illness and never really had conversations about her wishes or values with her family or her medical team. While it is ideal to start these conversations long before someone is sick and in the hospital, I felt I needed to be the one to bring the conversation up.
For the first time Anne was able to discuss her fears and what her wishes were for her care.
Considering the strained relationships at home I felt it was important to be sure Anne understood who would act as her substitute decision maker, the person who would make health care decision on her behalf if she was unable to. This turned out to be a really important discussion that resulted in Anne naming her mother to be her Substitute Decision Maker through a Power of Attorney for Personal Care. Without this documentation, her common law partner would have been her Substitute Decision Maker if she needed one and that wasn’t what she wanted.
I wouldn’t describe our conversation that day as necessarily ‘easy’, but Anne thanked me for ‘going there’. Anne died peacefully less than one month later.
Far too often I see people like Anne, who have had not had any Advance Care Planning conversations with their Substitute Decision Makers or other loved ones. In Ontario, Advance Care Planning involves two main steps: 1) identifying who will make health care decisions for you in the event that you are mentally incapable of making decisions for yourself and 2) having conversations with them, other loved ones and your doctor about your wishes, values and beliefs.
As a physician, I am always encouraging my colleagues to share Advance Care Planning resources with their patients and to encourage these conversations. But, we all have a role to play in spreading the word about Advance Care Planning as we are all people at the end of the day.
So for all of us who are part of the Waterloo Wellington community, ask yourselves the following questions: Do you know who your Substitute Decision Maker is? Have you had conversations with them so they know what they need to about you in order to make health care decisions the way you would?
If your answer is No, start having these conversation today… don’t wait until it’s too late.
As residents of Waterloo Wellington, we are lucky to have a local program called Conversations Worth Having which is specifically dedicated to helping people understand Advance Care Planning in Ontario. While these conversations may not be ‘easy’, you will be happy that you ‘go there’.
Please visit www.acpww.ca for more information about Advance Care Planning in Ontario