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The art of treating a patient who doesn't want to be fixed

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There’s a patient at the hospice who makes me feel uncomfortable.

Henry is 76 years old, and has pancreatic cancer. He came to us from hospital, with a haemoglobin of 52. He feels a bit washed out, as you might expect. But he doesn’t want us to do anything.

Here at the hospice, a patient like Henry might have a blood transfusion to help with his symptoms, and we could support him to get back home. I’ve challenged my own misconception during this rotation: that when we hand out ‘palliative’ label, we nudge a patient into a stream of medicine where all intervention is withdrawn.

I was in battle mode, ready to fight to the bitter end. Being asked to disarm was unnerving.

But each day on the ward round, Henry resolutely refuses everything. And he has capacity to do so. I find myself somewhat uncomfortably twiddling my stethoscope at the end of his bed, as he politely ushers me away so he can get back to watching Jeremy Kyle. His words follow me out of the room: ‘I’m ready to go now Doc.’

I stand outside the door of his cubicle each day, letting the discomfort percolate slowly through me. And then wonder why he makes me feel this way.

The last few months have opened my eyes to a speciality I knew little about. To start with, I’ve begun to appreciate what it actually means. In particular, as the WHO explains, it ‘intends neither to hasten or postpone death’, but ‘improve the quality of life of patients and their families facing the problem associated with life-threatening illness’.

At medical school, I don’t recall learning much about palliative care.  After all, doctors are meant to keep patients alive, to treat them. I don’t remember many lectures on tending to their demise. Health meant the presence of disease, and our job was to eradicate it or keep it at bay. And the way I saw it, a patient’s death declared a failure in that task.  

But Henry changed things. I’ve come to realise that my satisfaction in being a doctor stems from a feeling of competence, and that means feeding the urge to fix what’s in my control. But Henry doesn’t want me to fix him. He wants me to listen.  

Iona Heath captures this concept in her beautiful essay. ‘The Art of Doing Nothing’: ‘simply being present – there with the patient – and bearing witness so that the old adage is reversed and becomes: ‘Don’t just do something, stand there’’.

I realise now that doing nothing might be just the thing that makes Henry’s life better. My unease was rooted in hovering over that trade-off between quantity and quality of life. And in resisting that default compulsion to intervene, to whip out another weapon of technology that might, just might, preserve the last fibres of life. I was in battle mode, ready to fight to the bitter end. Being asked to disarm was unnerving.

But as the days passed, I remembered that I became a doctor to enable health. And that isn’t just the absence of disease of course, but the presence of well-being. And sometimes my patients have concerns besides simply prolonging their lives.

And of course, it’s not my decision. It’s his.

Henry, and my time at the hospice, have made me reflect on how we treat patients at the end of their lives. Death is a natural inevitability, and yet it still feels so unnatural to stand in the way of an unstoppable momentum of medical treatment. Have the stunning victories of medical science led us to revere longevity over what makes life worth living, unwilling to concede defeat?

Atul Gawande, in his fascinating book ‘Being Mortal’, sums this up eloquently: ‘Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it, the good we do can be breathtaking.’

It’s made me feel better about Henry. Especially now he’s started to close his curtains in the daytime, just to ’see what it’s going to feel like on the other side’.  

For now, it’s just a waiting game. There we stand, doctor and patient. A relationship that sometimes has a sanctimonious air about it, and other times, like now, is no more than two people stood side by side. One simply bearing witness, whilst the other stares into the abyss.

But I think that’s all Henry wants me to do.

Still, the art of doing nothing is harder than it sounds. 

Dr Nishma Manek is a GP trainee in London. Dr Manek is raising money for the Butterfly Thyroid Cancer Trust by running three half marathons over the next three months. If you would like to donate, please visit www.justgiving.com/3halfs3months

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Readers' comments (7)

  • I did my utmost best to help a dying patient and called the pain specilist nurse in and did my best as I had heard about him in a previous lunch time meeting. Indeed I remember going the extra mile for him, over and above what would be expected as I knew his history when I first saw him.
    Any way after he died, the patient's relatives complained about everyone who was involved in his terminal care due to their grief response as he had cancer at an early age.
    It went to the ombudsman and I was completely cleared as I had done everything I said and my notes proved that his care was very good and did not correlate at all to what the relatives said.
    Anyway after this I have learnt to be wary of this group of patients, which is a pity as I feel for them.

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  • Azeem Majeed

    Thanks Nishma. A very well-written article.

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  • Vinci Ho

    Remember what Immanuel Kant said about 'rational treating someone as in “end-in-himself” means treating him/her as a rational being.
    ''must always be esteemed at the same time as ends, i.e., only as beings who must be able to contain in themselves the end of the very same action.”
    As long as he/she has capacities , a rational being is responsible for his/her actions. Treat a rational being as a responsible being because he/she has dignity.....

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  • Vinci Ho

    And what is real autonomy?
    According to 'University'(old Chinese literature), one must have 'extremely honest determination' (意誠)to oneself . Keep away all the distractions from naturally occurring emotions, desires and reflexes (euphoria, sadness , greed , pain ....). Then , the heart(mind) is right in the centre(正心). Also according to Kant, one has the 'true freedom' to act........
    Sorry, too idealistic.......

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  • Lovely humble article listen to the person you are helping but don't necessarily take advice from others especially if not working at the coal face..each person is an individual who needs a unique response.some may want you to just listen and do nothing .others will want a great deal of input.

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  • 'Doing nothing' should always be on the list when considering what's best..and it's surprising how often doing nothing is indeed the most appropriate response.

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  • Sounds like Henry doesn't even want you to listen. He wants to lie behind his curtains watching Jeremy Kyle until the grim reaper comes.

    Don't suffocate him with attention. Some people (especially men) would often rather just be left alone without doctors or anyone else fussing over him.

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