Have you noticed we often use euphemisms about death? In my last blog on this, just recently I was advocating ‘telling it like it is’, and using words such as death, dying, die.
But the fact is, when you come to meet someone whom you know probably has only weeks to live, is it really helpful to use these words?
Recently I visited a family member who has a terminal diagnosis. We have always been able to talk in theory about end of life matters, have had discussions about what happens after death, and been very practical about what needs to happen beforehand.
But when I was face to face with her, I found I was glad of the euphemisms. This is unusual for me – if you’ve seen my TedX talk LINK you will know that I like to talk about the elephant in the room, no matter what the subject. But I have also been known to be a bit too blunt for my own (and others’) good!
So I noticed with interest that when talking to Mara (not her real name) I was saying ‘it’s difficult when you don’t know how much time you’ve got left’ and ‘perhaps you’ll tell us from another place what it’s like’, and ‘this popping your clogs business is just awful, isn’t it’.
I couldn’t use the d-word.
I just couldn’t. It felt too much in our faces.
The evidence of it was already there in front of us – medication, effects on the body of the illness, the hospice. Did it really need to be spelt out?
And yet it is really important for people to know what is what. Because many people arrive at their last days without really having taken this in.
Meaning they haven’t necessarily had important conversations; they haven’t had a chance to reflect on what has been important for them in their lives; they haven’t been able to create any kind of meaning in their last days or weeks.
That’s why Atul Gawande’s 5 questions are so important. Here’s my take on them:
1. What is your understanding of your current health or condition?
I have used this on many different occasions, and found it to be very helpful for everyone. It gives the opportunity for both the person who is ill to articulate what their thoughts are; it also lets the questioner know just what the patient might want to hear in the future. It also can clear the air of anything felt, but not yet put into words.
2. What are your fears about what is to come?
This is an open-ended version of asking ‘are you afraid?’, to which the answer can only be yes or no. Instead, with the very simple posing of it as assuming there are fears, it gives the patient the chance to either state they have no fears (helpful to know); to hear themselves state this out loud (which might make them reflect on how true this is) and to name what any anxiety might be about.
For instance, Jenny who was in the last stages of bowel cancer, told her husband she was afraid only of being in pain. So long as that was controlled effectively, then she was at peace with what was going to happen. This enabled her husband to ensure her medication was correct at all times and, while neither of them wanted her to die, it soothed him to know that she was at peace with the idea.
3. What are your goals, what would you like to do as time runs short?
Goals is a funny word to use in this context, as is the word ‘do’. Maybe better to ask what is most important to you as time runs short?
Answers can range from things already on the bucket list, to new inspirations popping up simply because the question has been asked. Sometimes, if the person is too ill to ‘do’ anything, listening to particular music or singing; seeing the grandchildren as much as possible; or saying goodbye to a pet can emerge as a priority. The important thing is the question has been asked.
4. Are there any trade-offs you are willing to make or not?
This addresses the idea of what are priorities, and how elements compare. For instance, do visitors need to be limited in time and frequency, and if not, are the consequences of that in terms of physical effects of exhaustion worth that.
and later on…
5 What would a good day look like?
It’s so important not to assume we know what a good day is like for the person dealing with the ending of their life. By asking what constitutes a good day for them, our job is simply to listen and then facilitate that as much as possible.
Obviously, when asking these questions you may not be doing it one after another! Use common sense and your intuition as to what works best in whatever situation.
In Module 3 of the Before I Go: Getting the Essential Questions Asked and Answered Before You Die programme, we go into how to have conversations about all kinds of end of life matters in much more depth.