I was recently fortunate enough to pack my bags and do some travelling with my family. It was so good to plan for this and know it wouldn’t be COVID-cancelled. At the same time, I have three boys and, in the midst of planning and packing, I sometimes wonder whether the chaos that this brings is actually worth it! One gets hangry, so we need enough snacks. The other usually forgets to pack something warm – he hates anything long and ‘claustrophobic’ – and then inevitably gets cold and needs to borrow a sweater. For everyone’s sake, devices need to be fully charged for the long road. Also because I like to take the smaller, winding roads and will not be forgiven if we get lost.
Going on any journey means planning ahead. Planning for what is likely, but also for the ‘what-ifs’ (which is why I tend to overpack). I have often thought this to be a much more useful serious illness metaphor, as opposed to the war one that we use more often. Wars imply winners and losers, and often leave destruction in their wake. Journeys can be gentle strolls, even if sometimes long. At other times, journeys are much more like difficult hikes: uphills with only the short relief of a plateau from time to time. It can feel as though one never quite reaches the top to appreciate the view. Sometimes there are unexpected hailstorms, sometimes 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 are supposed to be going and what you should pack.
In the same way, when one is 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. At the same time, it is also important for your medical team to know what matters most to you so that any treatment recommendations they make can be tailored accordingly. It is 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 is much less genericand more personal. It is 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 is 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 one needs to make difficult decisions, either yourself or perhaps in cases where others need to make them on your behalf.
These are some of the questions that peoplehave found of value to discuss:
- What would you like to know about your illness and what is likely to be ahead?
- What kind of information would be helpful to assist you in making decisions about your future?
- What does quality of life mean to you? Put in other words, what does a good day look like?
- 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 and 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?
- Ask yourself: How do I want to involve the ones that I care about?
- Is there someone that you trust who could make decisions on your behalf if you are unable to do so, a so-called Mandated Healthcare Decision-maker?
Contrary to what one might think, once you take the first step, talking about these things more often brings relief and does not raise anxiety levels. This has been proven through 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 is never too soon to talk about these things. More often, we talk too late. Your healthcare team might well not bring up this topic, ever. It will be up to you to introduce the conversation: “Doctor, 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 this website: https://theconversationproject.org/