You’re grateful for the time you have with your loved one and you want to enjoy it. At the same time, you want to understand their end-of-life wishes so you can make sure that they live the way they want. How do you start the conversation when your loved one has an illness?
The first step is figuring out, “Do I need to have the conversation now?”
The goal is not to have a hard conversation just for the sake of bringing up difficult topics, but to do it at a time when your loved one can engage in important decision-making. Some factors to consider are to determine your loved one’s readiness to talk and the level of urgency.
You probably have a sense of this from comments your loved one has made in the past. How do they talk about their illness? How have they reacted in medical appointments when their doctor shares news? Do they tell others updates on their illness, or do they always say that they’re going to beat this disease? These can all indicate how your loved one is coping.
In medicine we call this “prognostic awareness”—how aware someone is of what the future looks like, both on a cognitive and emotional level. Do you and your family have a sense not only of how much time is left, but also what that time will look like? It’s not unusual for people to make seemingly contradictory statements that make you confused about how they’re coping. This is often a normal part of every person’s unique process of coming to terms with their life. Here’s one example from the book The End of Your Life Book Club by Will Schwalbe, writing about his mom’s experience with cancer:
There were days when she wanted to talk about her death, and days when she didn’t. It could even switch minute to minute. It felt like being in a car with a driver who abruptly changes lanes without ever signaling. One minute we’d be talking about aspects of her funeral, then suddenly she’d be onto the television film of Alexander McCall Smith’s The No. 1 Ladies’ Detective Agency, and then, barely pausing to take a breath, she’d be right back at the funeral…”
So don’t be discouraged if it seems like your loved one has no desire to talk about it right now! It is part of the natural process and can take time.
This depends both on how much time is left and your loved one’s expected quality of life. (When we talk about time, it’s a rough estimate. Doctors are actually pretty bad at predicting this—but they generally can give an idea on the order of days, weeks, months, years.) Will your loved one be bothered by any symptoms or have any trouble with getting around–things that can can make it hard to accomplish things or go on trips?
Early in an illness, your loved one may be so overwhelmed that it’s probably not the best time to ask them to make decisions in the moment. You and the medical team might also still be in an information-gathering stage. There are a lot of uncertainties that would affect planning. Let your loved one know that the communication channels are open for whatever they want to talk about.
Later on, you can think about bringing back the conversation if there is a major change, like stopping treatment or being in the hospital.
Cake sound bites (example conversation starters):
I want the doctors to be wrong when they said we only have months left, but I’m scared about even the smallest possibility that they’re right… we’ve already talked about medical decisions, but not about other things, and I want to know what’s most important to you…”
We know it can be particularly hard to bring up non-medical topics like financial planning or what your loved one wants for their funeral, because it seems less related to what’s going on. You might say:
Since we won’t have to go to chemo anymore, maybe we can take a break from thinking about all the medical stuff. Do you think we should talk about our plan for the kids and paying for their college?”
A couple other tips:
- Sometimes people are afraid that once this conversation starts, that will open the floodgates and they will have to talk about dying all the time. Reassure your loved one that this is not the case. You have to make some key decisions together but you will only return to these subjects when you need to—in that way, they won’t silently take over the time you have together.
- If possible, find a day when your loved one is physically up to talking about this. It can ease the mental energy required.
If you feel the timing is right, continue on to Part 2 for ideas on what to say.