That Difficult Conversation - Talking About End of Life Care

Death. We never talk about it. Very British. Stiff upper lip and all that. Which is fine until we need to talk about it. But of course, by then it's often too late as a loved one is facing the end of their life as a real event, not some theoretical 'it might happen' occurrence.

Of course, death, eventually comes to us all but as we get older, more frail and with the addition of life-limiting medical conditions, the proximity of the end of our life draws ever closer. But still we don't want to talk about it. And then it's too late.

So as an adult child or family member, how can we approach discussions with a loved one to make sure that their wishes at the end of their life can be fulfilled? I was moved recently by listening to an excellent Podcast of a Reith Lecture by an American doctor - Atul Gawande - who spoke intelligently and sensitively about the constant drive in medicine to extend life - to view length of life as the meaningful measure of merit rather than quality of life. I cannot claim to be as erudite or as qualified as Dr Gawande. I'd really encourage you to listen to the whole pod42 minutes, since I know you're wondering how long that will take! You'll undoubtedly be inspired to listen to all four of his Reith Lectures). 

What Dr Gawande does is frame a series of questions that as an adult child - or a doctor can ask our loved one about what they really want as they approach the end of their life. He says that doctors try to explain to patients about what is happening to them by giving lots of facts and information a- and typically in a consultation, doctors talk 90% of the time. I think I've experienced that with both myself and my children over the years! Dr Gawande suggests that we come to grips with our anxieties, hopes and fears by putting them into our own words and letting the patient talk at least 50% of the time.

To achieve this, he asks questions - questions that are great at eliciting what a loved one's real understanding of their situation is and what their priorities are. Now Dr Gawande's question style is quite formal - quite doctor-patient, but I think we could all re-frame these in our own words when talking to a loved one about what they want as they approach the end of their lives. Here are the four questions he suggests:      

• “What is your understanding of where you are with your condition or your illness at this time?”

• “What are your fears and worries for the future?”

• “What are your goals if time is short?”

• “What outcomes would be unacceptable to you?”

As Dr Gawande says, "they’ve told you their priorities and what they care about and then that tells you both where the bright lines are that you do not cross and what you might actually be aiming for". Armed with this critical information, it's possible to build a plan for the end of life care for a loved one and the legal instruments to ensure that their wishes are fulfilled. This may involve a Power of Attorney, a 'Do Not Resuscitate' instruction, Living Will or Advanced Directive. 

Talking about the end of a loved one's life can be very empowering for both the loved one and their relatives. For my part, I know that my wish would be for quality of life over length of life. I know that I would rather die in my home than in a hospital or in an institution. But that's just my view. What is really important to me is that my family know what I want and understand that as I get older and perhaps more frail, my wishes may change. So this is not just a 'once only' conversation, but rather one that should be revisited periodically. Armed with both the questions and the experience of having had the 'difficult conversation', this should become a little easier.

If I have piqued your interest, not only in this subject, but in listening to Dr Atul Gawande, the Reith Lecture on this subject - titled 'The Problem of Hubris' can be found on the BBC website here: Dr Atul Gawande - Reith Lecture 'The Problem of Hubris'  I'd encourage you to listen to all four Reith Lectures - they are inspirational and educational and he's a great speaker!

John Kirk is a Senior Care Consultant with over 14 years’ experience in senior care including leading a large residential & nursing care home group, high quality care at home services and the provision of specialist consultancy services to residential, nursing and domiciliary care providers.