Sunday, 22 January 2012

Timing is everything

A man invited me to his funeral the other day. I would very much like to go.

We had had a brief conversation about something that we had both noticed: that he was going to die soon.

The realisation that your body is giving out on you must be both powerful and incredibly lonely. In my practice, it is rare for my patients to have a clear recognition of their own impending death - most of them suffer significant confusion and drowsiness in the days leading up to it, so I am much more familiar with having to talk their families through the process.

Watching an individual come to terms with their own deimise can feel like the worst form of voyeurism, and the temptation is to pretend that it isn’t happening, that our medical magic will kick in and everything will get better.

It doesn’t work like that. Having conversations with patients and relatives about dying always feels hard, and it is very difficult to do it well. Sometimes I have to remind myself that it is not my bad news, that it isn’t happening to me, and if the most helpful thing that I can do is to allow someone the warning they need to plan how they would like to die, then it is my duty to bury my reticence and get on with it.

I have never regretted discussing end of life issues with patients and relatives,and I always wonder how well I managed it: it is impossible to really understand what it is like to know you are going to die, and therefore, whenever I talk to patients about it, I have to speculate a little on how best to help, what language to use and what to talk about.

Patients are often very generous, and acknowledge how hard these conversations must be - it can be embarrassing how lovely they are.

Diagnosing when someone is dying is also very difficult, because when one has been dealing closely with a patient, noticing that they are fading away can go unnoticed among all of the details of their treatment, blood test results and so on. It is also a big call to make, and in diagnosing the dying process, I often feel obliged to stop all active treatments.

There are two practices that I have learned to help me overcome these challenges: firstly I often ask for the opinion of another doctor or the palliative care team: a fresh perspective can be crucial in helping you believe what is in front of your eyes, and help you accept the need to change focus. Secondly, recognising that someone is dying does not mean that you have to stop all active treatment: there always remains scope for doubt, and often the treatments we have prescribed have a useful role in managing a patient’s symptoms. There is simply no need to stop everything. As the disease progresses, or the patient deteriorates then all of the different treatment choices can be reviewed: it does not all have to be done in one go.

This article by Atul Gawande ( ) also helped transform some of my attitudes to palliative care, and helped me understand that ‘active’ treatment is often a misnomer: modern palliative medicine is not about doing nothing, it is about recognising that the goal is not cure or preservation of life, but about patient experience: if a patient is breathless from their pleural effusion, then by all means drain it. Sometimes we need to admit that ‘active’ treatment is in fact ‘forlorn’ treatment, and the only thing really active about it is the degree to which we are engaging in the delusion of ourselves and our patients.

I am particularly struck by the evidence that patients can live longer when they abandon trying to cure their disease. I suspect that this is a function of the toxicity of treatments used to cure cancers and also something to do with the psychology of survival. There is good evidence that people, to some extent, choose when they die: how many patients do you know that live until the special birthday, event or anniversary and then die shortly afterwards, and how often have you heard of a couple who have been married for 50 or 60 years die within weeks or months of each other? A good way of reducing your autonomy over when you die it seems, is to try and cheat death, and hold out hope when there really isn’t any. Survival can be improved by accepting you aren’t going to survive. Odd but somehow apt.

Therefore, the patient who invited me to his funeral is someone that to some extent we should envy: he is someone who has been able to identify that no medicine could cure him and accept that; and in accepting this truth, we were able to help him spend his last days well cared for in a hospice with his wife by his side. And if that isn’t a success story after 87 years of life and 65 years of marriage then I no longer know what is

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