Knock on the door, or barge in? How to start conversations about the end of life with our family and friends.
Professor Ruth Parry
National Institute for Health Research Career Development Fellow, Loughborough University, UK.
I work in a scientific field that has a lot to say about how people can and do talk about dying and death. This field is known as ‘conversation analysis’. Conversation analysts record real life communication as unobtrusively as possible, then study those recordings to understand communication behaviours. In particular, we look for patterns of communication, things that people frequently do – rather in the way that naturalists study patterns in animal behaviour. We often focus on issues that cause difficulties when people attempt to communicate about them. We don’t just focus on those difficulties, we use the recordings tease out ways that people handle them. So, you can see that conversation analysts might have some useful things to say about how to communicate about the end of our lives.
In this blog, I’m going to focus on communication about dying and death between family and friends, rather than between patients, their companions, and healthcare staff. I will focus in particular on some ways to raise dying and death not in the abstract, but when we want to talk about our own death or that of the person or people we are talking to.
Although few conversation analysts have studied talk about dying and death in situations other than healthcare, I still have plenty of ‘evidence-based’ things to say. First, I can draw on research about how people talk about other difficult topics. Lots of studies have examined how people manage to raise and talk about difficult, sensitive topics, and many of these have focused on conversations between family members and friends. Second, scientific findings about how people talk about dying and death during healthcare conversations are actually very relevant to what happens when we talk with friends and family about these things. This is because we don’t leave our habitual methods for communicating at the clinic door. We use just the same methods that we use all the time–eye gaze, facial expressions, gestures, tone of voice, and so on. Conversation analysts know a lot about these methods. Well, actually, anyone who isn’t a conversation analyst also knows a lot about them. The difference is, analysts are better equipped to spell these out. When we humans talk with one another, we focus our attention on what is being talked about. How we talk about it tends to go unnoticed. But conversation analysts do notice the ‘hows’. Conversation analysts know a lot about these methods. Well, actually, anyone who isn’t a conversation analyst also knows a lot about them. The difference is, analysts are better equipped to spell these out. When we humans talk with one another, we focus our attention on what is being talked about. How we talk about it tends to go unnoticed. But conversation analysts do notice the ‘hows’.
So, what does research in my field tell us about how people can bring up and then talk about the end of their lives with friends and family members?
How to get the door open
Imagine a door, behind which is a conversational space for talking with one another about our dying and death. We could get through that door in a number of ways. We could just barge in, no messing, straight to the point. But this barging approach bears no resemblance to what people actually do when they move towards talking about difficult, sensitive, potentially distressing subjects. Usually, they go gently, and they proceed slowly, step by step.
Gentle knocking on the door
One first step is to ask questions that give a person the opportunity to open the door, but that make it easy for them not to do so if they aren’t ready, if they aren’t in the right place. For instance, imagine you are with your Mum, or your daughter, or a close friend. Someone they are very close to has been diagnosed with a terminal illness or has died. You’ve been talking about that. A question that might open the door might be something like: ‘Does that make you think about you?’. Or, when you’re with your friend or your relative, you could take the initiative and raise something that paves the way for this kind of question – you might raise the subject of Dying Matters Week, or mention a book or a TV programme about dying and death. Once you are talking about that, you can then ask questions that give you both (or all) the opportunity to move from talking about something that is relatively distant, to talking about your own dying and death. Giving people opportunities can work well – it can open the door to that conversation, but it avoids forcing the issue on someone who’s not ready. Even if the conversation does not happen then and there, it can plant a seed in someone’s mind, and show them you are open to talking about these things.
Pushing a bit harder
Sometimes, you may want to push on that door a little bit harder. Maybe your family member or friend is ageing and becoming frail, or has received a diagnosis which might be life-limiting. Perhaps you have tried the the ‘giving an opportunity’ strategy, but it has not got you into the conversational space where you can talk about and plan for end of life together. You could then opt to ask questions that knock on the door a bit harder. There are at least two ways to do that. One is to use hypothetical questions. Another is to refer to something your family or friend has mentioned before, and ask them more about it.
To ask a hypothetical question, you talk about some future, hypothetical scenario (for instance becoming more disabled or unwell) and you then ask what the person would want in that situation. Because the scenario is hypothetical – you are not saying it will happen, just that it might – people seem to find it easier to talk about. Research evidence suggests that it is a good ideal to clearly convey that you are talking ‘just’ hypothetically – this downplays the connection between your friend or relative and the reality of their future dying. This distancing seems to make it easier for people to talk about difficult topics. It can be helpful to balance the distancing effect of talking hypothetically with things like a serious tone of voice, attentive gaze, and touching the person or holding their hand – these help you show that this is serious, sensitive and is very much connected to the person whose hand you are holding.
Another technique that often helps get the door open is to bring up something that your friend or relative has mentioned before (whether in this conversation, or an earlier one), then take it further by asking more about it, and moving into talking more about it. Perhaps they’ve mentioned being worried, or having difficulty doing something that used to be more easy. You can help them link concerns they have already expressed, with concerns about and plans for end of life. By doing this, you show the other person that you listen carefully to them and remember what they say. Also, this way of moving towards talking about dying and death means you avoid one-sidedly introducing the issue. Returning to the door metaphor, this is somewhat like sharing together the job of opening the door – rather than you just pushing or barging in.