Does your healthcare team know what matters most to you?

How to Talk to Your Healthcare Team About What Matters Most – Insights from Dr. Margie Venter

I was recently fortunate enough to pack my bags and travel with my family. That said, I have three boys—and in the midst of planning and packing, I sometimes wonder if the chaos is worth it! One gets hangry, so snacks are essential. Another always forgets something warm—he hates anything long and “claustrophobic”—and then ends up cold and borrowing a sweater. And, for everyone’s sake, devices must be fully charged for the long road. Especially since I like to take the smaller, winding routes—and I won’t be forgiven if we get lost.

Any journey involves planning: for what’s likely, and for the “what-ifs” (which is why I tend to overpack). I’ve often thought this is a far better metaphor for serious illness than the war analogy we usually hear. Wars imply winners and losers and often leave destruction behind. Journeys can be gentle strolls, even if long. Other times, they’re more like steep hikes—uphill, with only brief plateaus to catch your breath. Sometimes there’s hail; sometimes, sunshine. Sometimes you realise you should’ve turned left. Still, it helps to know where you’re headed and what to bring.

Likewise, when facing a serious illness, many people find it helpful to talk about what to expect and do some planning. It’s equally important for your medical team to understand what matters most to you, so any treatment decisions can be shaped around that. This isn’t the same for everyone, and as healthcare providers, we sometimes assume rather than ask. That’s where a ‘serious illness conversation’ comes in.

You may have heard of Advance Directives, Advance Care Planning, and Living Wills. This is similar, but more personal. It’s a conversation between you and your healthcare team that focuses on your values and goals in the context of your health. These views may change as your journey continues, so it’s a discussion worth revisiting. You may also want to include people close to you. Documenting the conversation can help guide decisions—whether made by you or, in some cases, by others on your behalf.

Here are some questions people have found helpful to explore:

• What would you like to know about your illness and what lies ahead?
• What information would help you make decisions about your care?
• What does quality of life mean to you? What does a good day look like?
• What matters most to you, and what would be important if you became sicker?
• What are your biggest fears or concerns as you think about the future?
• If you became sicker, how much would you be willing to go through for a chance at more time? Are there treatments you would rather avoid?
• How do you want to involve the people you care about?
• Is there someone you trust who could make decisions on your behalf if needed—a healthcare proxy?

Contrary to what many assume, talking about these things often brings relief, not anxiety. Research has shown that it gives people a greater sense of control and helps the medical team make not just clinically appropriate, but personally meaningful recommendations.

It’s never too soon to have this conversation—but too often, it happens too late. Your doctor may never raise the topic. It may be up to you to start it: “Doctor, I want to talk to you about my goals of care and living with my serious illness.”

You can find more guidance and resources here: https://theconversationproject.org/