Communication and support at the end of life is so important

We mustn’t lose sight of the importance of good communication at the end of life

It was heartening to see Helen Jamison’s article in The Independent yesterday. If you missed it, Helen wrote a moving article about her mother’s death, and the recent controversy over the Liverpool Care Pathway.

This was great to see, because here was someone who was prepared to use what must have been such a difficult personal experience to highlight issues which are so very important.

As she wrote,

Given the fact that death will affect each and every one of us, we are surprisingly bad at talking about it…

Several times I tried to get information about what would happen, from all the places you might expect, but none of it cut the mustard. It may be difficult to predict exactly what will happen in individual cases, but we weren’t even told about what might happen and how to prepare for it. Even when it was staring everyone in the face, there was little mention of the elephant in the room.

Like Helen, at Cancer Research UK we strongly support the need for good palliative care, as well as research into new treatments to save and extend life.  And, like Helen, we fully understand the value of good clear communication even about painful issues such as death and dying.

In her article she acknowledges the difficulties for health professionals in predicting exactly what will happen at the end of someone’s life – but it often is possible to give families some idea about what to expect

Although health professionals may not know for certain what will happen to any individual patient we should try, when asked a direct question by patients and carers, however difficult, to give an honest answer, even if this involves describing a number of different possibilities.

It’s not enough just to say “everything will be fine”, or “you don’t need to worry about that yet”.  It’s generally much easier for everyone to cope at the end if they are prepared for, say, the way someone might be breathing at the end of their life, or that although things might happen quite quickly, some people may appear unresponsive for some days before they die.

Giving a prognosis can be especially challenging for health professionals, and in some cases it really isn’t possible.  But often, when it is known that someone is dying, it is possible to give a frame of reference and talk about days rather than weeks, or weeks rather than months, as long as caveats are given that you might be wrong.

Recognising these issues, Cancer Research UK’s patient information website was the first – and is still one of the only – patient information websites to try to provide information on outlook and prognosis for different types of cancer. And we’ve shown that it’s possible to present this information in a sensitive way.  We also have a section about dying with cancer which aims to give people a sense of what the end of life might be like.

And although only about one in every hundred calls to our helpline is about death and dying, the nurse team will be as honest as they can with callers asking these questions, within the constraints of an anonymous helpline.

So like Helen, we would encourage everyone not to lose sight of the importance of good communication – as well as good palliative care – at the end of life.

Martin

• Martin Ledwick runs Cancer Research UK’s information nurse service. If you need someone to talk to, you can call our nurses freephone 0808 800 4040, 9am-5pm, Mon-Fri or contact them online.