How to start the conversation?

I met recently with a group of medical people to discuss how we can help people to plan for a good death.  From this discussion it emerged that a lot of medical staff have experience of struggling to talk to the patient about end of life matters and/or distressing conversations with the next of kin who often don’t know what the patient feels about any of it.   The struggle can be on both sides: medical staff who feel awkward or unskilled and patients and families avoiding dealing with the inevitable.

It would seem that there does not seem to be an obvious point at which you can start this conversation about how you or someone else would like to be cared for at the end of one’s life. When we are fit and healthy it’s a topic we can put off to another day but when we are ill it can feel too scary to talk about dying.  So when is a good time?  And how do we broach the subject with other people about either their death or our own?  One participant stated that she knew what her parents wanted but I wondered if anyone knew what she wanted!

Experience suggests that there can be some natural points.  For example if you are talking about another person’s illness it might prompt a discussion about what your preferred care would be if you were in their shoes.  Another opportunity could be watching television programmes whether they are soaps or documentaries.  Watching actors angst over whether to switch off a life support machine can lead to a discussion that feels safer as its not close to home.  The really hard conversation is the one you feel you need to start cold – actually saying to someone:

“Its really important that I talk to you about what I want when I die.  Not just about the funeral but what happens at the end of my life.”

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Now the only trouble with this is you may not get the response you want.  For some people even the thought of you dying may be too much for them to even consider.  It is an old superstition that to talk about death is to invite it in.  But maybe if that person isn’t able to have a full conversation then it lets you know that you have to have a Plan B.  Maybe in stead you will have to settle for:

“If something happens to me I want you to be the person who speaks for me if I can’t speak for myself.  And if that happens then I want you to know that I have written down what I’d like and the papers will be with my will in my desk.”

Then write it all down.  If you want to tell them that you want to refuse any particular types of treatment then that will have to be an Advance Directive which is signed and witnessed to make it legally binding on the medical staff and if you know what other things you want like preferring to die at home or wanting a humanist ceremony then you can write that in a Statement of Wishes.

In an ideal world you should do both – talk to your loved ones and write it down.  Maybe it will encourage them to do the same – after all death has no respect for age or circumstances so, sadly you never know when you might need it.

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