View from the ground by Dr Honor Merriman
A young patient with an unexpected cancer diagnosis (widely disseminated at the time of diagnosis) said that he wished to die at home, cared for by his family with professional support. He had a large extended family who all said that they were willing to help and be involved. Unfortunately, in the last few weeks of the patient’s illness it became apparent that the family really didn’t understand what they had taken on, and many of the healthcare professionals involved were called to the house several times each day.
The family were not able to cope as well as they wanted to; it became apparent that they did not have the capacity to deal with what the patient needed on a practical level while coming to terms with their own emotions. In the face of frequent phone calls from different family members, the supporting healthcare team also started to struggle—when I phoned the district nurses one day, a member of the team described the family as ‘very heavy-duty’. I found this remark unfortunate, and yet it was understandable why it had been made. In the end the young man’s wishes were realised; he died peacefully in his home with his family around him.
I have thought about these events frequently since then. As GPs, we take the patient’s wishes at face value and assume that relatives understand what they are taking on when they agree to look after a terminally-ill person at home. In this case, it is now clear that the family needed more support than we initially assumed. I have wondered what we might have done differently, and I now think that we did all we could. Thinking about death and planning for it are things that we, as professionals, may find hard to do, and it is certainly just as challenging for our patients and their families.
There are several guidelines on end of life care. The latest guidance from the GMC is clear and helpful, and they have also recently produced some videos about communication in the context of end of life care.
One of the most useful books I have read within the last couple of years is Being mortal by Atul Gawande (Picador, 2015). Near the end of the book, there is a chapter called ‘Hard conversations’ where he describes three different kinds of communication. Firstly, he describes the traditional kind as ‘paternalistic’; where doctors seek to ensure that patients receive what medical professionals believe is best for them. He describes the second type of communication as ‘informative’; this is where we tell the patients all the facts and figures and leave the patient to make the decisions. This is a useful approach for well-informed patients who are able to interpret the information. However, neither of these types of decision-making is what people really want.
Gawande describes the third type of decision making as ‘interpretive’, and says the doctor’s role is to help patients over time, with several opportunities to make plans together. He suggests that, in an interpretive approach, doctors ask patients: ‘What is the most important to you? ’ and ‘What are your worries?’ In this approach the doctor describes the different types of treatment and which would be most appropriate to the patient’s chosen priorities.
The interpretive approach is common in general practice and shared decision-making is appropriate for many of the day-to-day consultations that we perform. I found this part of the book reinforced what I already thought, and I wondered how far the interpretive process had been followed in the case of the family I have described here.
Just as I was thinking about all of this, I read the poems of Clive James: Sentenced to life. He was diagnosed in April 2011 with chronic lymphatic leukaemia. He expected to die fairly quickly from this; however, he has had several successful treatments and seems surprised to find himself alive in 2016. It is good that he has felt able to use his writing skills to express exactly how it feels to be dying. In Sentenced to life, he says:
‘I see things now with a whole new emphasis …
… Now I catch the tone
Of leaves. No birds can touch down in the trees
Without my seeing them. I count the bees.’
It is no bad thing for healthcare professionals to think about living well and dying well. We are reluctant to think about it, but I believe we should for our own sake and the sake of our patients.