What Do You Want? Talking About Advance Care Planning

Written By Aileen Trang

My grandmother passed away when I was 10 years old. Although she had lung cancer, she passed away because of a head injury she got falling during a stroke. I remember being at the hospital when the doctor told my father that my grandmother needed surgery for the head injury right away, but her recovery didn't look promising and it was likely that she wouldn't be herself afterward.

"What would you like to do?" the doctor asked. My parents whispered amongst themselves for some time, then finally called the doctor over. My dad told him not to do the surgery.

I resented my dad for his decision that day. I remember thinking the surgery would give my grandmother a chance to live. Even if she wasn't herself, getting part of her back would have been better than nothing. How could my dad take that chance away from her? Away from me?

As the years went on, both my parents had major health events and I became their caregiver. I vividly remember a family dinner about six years ago, quietly eating dinner with my parents, a hockey game on in the background. My dad suddenly broke the silence: "So your mom and I made a will and power of attorney. I'm only going to say this once. I want your mom to make decisions for me when I can't, and I'll make decisions for her when she can't." This was the first and only time we talked about advance care planning as a family.

quotation mark In the end, he decided to do the right thing for her, even though he wanted something else.

I was a little hurt that they didn’t want me to be their decision maker because I'm so involved in their care. To me, there is nothing more intimate than the relationship between a caregiver and the care receiver. I thought I knew their preferences and opinions, but after asking a lot of questions and being surprised by their responses, I realized I was wrong.

If a day comes when they can't make decisions about their own health, they didn't want me to have to make it for them. They are more comfortable telling each other things they can't tell me, and they wanted to be sure that the right decision was made for them. My dad brought up my grandmother’s passing and how he had wanted the doctor to do the surgery. What made him decide against it was a very brief conversation he had with my grandmother, only a week before the incident. My grandmother was having bad nightmares and insisted on talking about the afterlife and making hard decisions with my dad. Given the choice, she would rather pass than to live as a vegetable. She had lived a happy life and would rather be set free.

Now I realize my dad’s decision not to let the doctor do the surgery on my grandmother was very difficult. In the end, he decided to do the right thing for her, even though he wanted something else.

Being a good substitute decision maker or caregiver is not about you or what you want. It's really about the other person and what they want. You are simply a facilitator. This point is the compass I try to use for every caregiving decision I make.

No matter how intimate you are with the other person, you can't assume you know what the other person wants or needs. Having an open and honest talk about advance care planning is so important, not just for your loved one but also for yourself. It ensures that you know how to carry out what your loved one would want, in the way they would want it. The talk takes away that room of interpretation, of doubt, where assumptions are made and guilt and remorse lingers after.