Dr Margie Venter enlightens us on how to inform your healthcare team on what matters most to you when facing a serious illness.
Going on any journey means planning ahead. Also a cancer journey. Planning for what’s likely, but also for the what-ifs. I’ve often thought this to be a much more useful cancer metaphor, as opposed to the war one. Wars imply winners and losers, and often destruction in its wake.
Journeys can be gentle strolls, even if sometimes long. Other times journeys are much more difficult hikes, up hills with only the short relief of a plateau from time to time. It can feel as though you never quite reach the top to appreciate the view. Sometimes there are unexpected hailstorms, or a break in the clouds allowing the warmth of sunshine. Sometimes it would have been better to turn left. Either way, it helps to plan a little, knowing where you’re supposed to be going and what you should pack.
A serious illness conversation
In the same way, when you are on a journey with a serious illness, many people find it helpful to talk about and know what to expect along the way, so that they can do some planning.
It’s also important for your medical team to know what matters most to you so that treatment recommendations they make can be tailored accordingly. It’s not the same for everyone, and as medical professionals we sometimes leave it to assumptions rather than inquiry. It requires what we call a serious illness conversation.
You will have heard the terms: Advance Directives, Advance Care Planning and Living Wills. This conversation falls somewhat into that category, but it’s much less generic and more personal. It’s a conversation between you and your healthcare team that focuses on your goals and values when thinking about your health.
We understand that these views might change as you reach different parts of your journey, so it’s a conversation to have more than once. You might also want to involve those you care about and have them present. Documenting and reviewing this conversation is helpful to refer back to at times when you need to make difficult decisions, either yourself or perhaps in cases where others need to make it on your behalf.
- What would you like to know about your illness and what is likely to be ahead?
- What kind of information would help you make decisions about your future?
- What is most important for you to have a good quality of life?
- What matters most to you and what would be your most important goals if you should become sicker?
- What are your biggest fears or worries as you think about the future with your health?
- If you become sicker, how much are you willing to go through for the possibility of extra time? What kinds of medical care do you think you might not want?
- How do you want to involve the ones that you care about?
- Is there someone that you trust who could make decisions on your behalf if you’re unable to do so, a so-called healthcare proxy?
Contrary to what you might think, once you take the first step, talking about these things more often brings relief and doesn’t raise anxiety levels. This has been proven with research.
It gives people more control and certainly should help your medical team to make wise treatment recommendations, not just medically correct ones.
Know that it’s never too soon to talk about these things. More often we talk too late. Your healthcare team might well not bring this topic up. It will be up to you to introduce the conversation, “Dr, I want to talk to you about my goals of care and living with my serious illness.”
More information and tips can be found on theconversationproject.org
MEET THE EXPERT – Dr Margie Venter
Dr Margie Venter is an oncologist and palliative care doctor based in Stellenbosch, Western Cape. She is also Clinical Director of PALPRAC, the Association of Palliative Care Practitioners of South Africa, an organisation that provides national leadership and advocacy for the equitable provision of palliative care to all South Africans.
Header image by Adocbe Stock