By Rachel Carter
For many of us, picking out a birthday gift for a loved one is a difficult task if we don’t know what they want. Imagine trying to make decisions on their behalf about their healthcare needs.
The concept of Advance Care Planning resonated with me as soon as I heard about it. The importance of ensuring that those who may need to make decisions on my behalf know what I want makes sense.
Much like providing a list of gift ideas, it seems sensible to provide information about my potential healthcare choices. As a healthy, young adult this turned out to be easier said than done because I can’t tell loved ones what I want if I don’t know myself. The more I’ve learned about Advance Care Planning, the clearer it has become that it’s an ongoing, iterative process.
Some concepts and ideas were fairly simple to understand and I was able to easily form opinions. Others, however, required more reflection. For example, I’d heard the phrase “not to be a burden,” but quickly realized I didn’t fully understand its significance. Being a burden? What does that really mean?
In my adult life, I hadn’t been in a situation where I needed to be cared for beyond minor illnesses. Similarly, I had not had reason to provide this kind of care to others. That lack of experience made it difficult to conceptualize whether “being a burden” was important to me if I became seriously ill.
Not long after I began documenting my Advance Care Plans, I broke my arm and required surgery. I didn’t respond well to the procedure or the medication, and I required support from those around me. Admittedly, being looked after by my partner for the first few days was comforting; his attention and assistance was nice. But then days turned into weeks and I started to understand. I began to fully appreciate just how draining it was on him to take care of all my needs. I started to imagine how exhausting it would be to continue to look after me without knowledge of my impending recovery. And I realized how badly it made me feel that I was inflicting this upon him.
That experience helped inform my opinion on what it means to be a burden and to consider how I wanted to manage future health needs in my Advance Care Plan.
I viewed this experience as the perfect opportunity to revisit the conversation; to form new thoughts and opinions, and to rethink those previously discussed. For me, it confirmed that Advance Care Planning is meant to be a fluid process.
Rachel Carter is a Research Manager at the BC Centre for Palliative Care but wrote this piece as a member of the public.