I promise, I will very soon stop focusing on end of life and turn to cheerier topics. For now, however, bear with me.
I have titled this blog ‘confidence’ as I feel it is an important topic within healthcare.
I recently heard stories of relatives telling the experiences of what might best be described as good and bad deaths.
Most people have a an understanding of what I mean when I use these terms – good – painless, at an old age, surrounded by family, natural setting and so on, bad – pain, alone, too young;
Some of these characteristics cannot be altered or influenced; for example, developing terminal cancer as a young man and dying prematurely is just the way it is; sure, oncologists and clinical scientists are working hard to find a cure for cancer, but as this is effectively an infinite variety of conditions and diseases, the cure is going to evade us for some time.
Other aspects can however come under the influence of individual action.
Here, I am not talking about Euthanasia which has featured recently in medical media. I don’t believe that is something I am qualified to discuss.
More, how we support people who are dying and, crucially the aspect of confidence.
In the UK, when an individual’s death is anticipated – the relevant signs and symptoms are identified by doctors, nurses, family and friends, much can be done to support the person; whether this is making the appropriate anti-anxiety or pain medicines, addressing financial burdens or stopping unnecessary and inappropriate treatments – we call much of this palliative care.
When palliative care is available and it works, we have more often than not the situation of good death, although, of course, this cannot ever be certain.
When however, there is failure to identify that a person is dying, that is when things can fail.
Recently I heard stories when this has not happened. I have myself, personally, both as a doctor and as a son been in these situations.
And this is what troubles me.
First as a son.
I’ll let you in on a secret.
As my mum lay dying in hospital, I downloaded the ABC of Palliative Medicine to my old iPad.
You see, by that time I was an experienced doctor – I was a consultant physician; I had passed tests and examinations relation to end of life care, yet, when faced with the reality, in a darkened room in a South Glasgow hospital, I was stuck.
What was happening didn’t seem right.
Eventually I was able to intervene and insist that the doctors stop trying to find a vein in mum’s bruised hand and stop offering or providing supposed curative treatments; in the case of mum, her heart was racing too fast – we call this atrial fibrillation. The doctors wanted to inject intravenous digoxin. I knew however that this would in no way influence the outcome.
Perhaps, my having written this might explain to folks why at times I become so upset when care fails.
The doctors in question were not seeing my mum – not the mum with a wonderful history of giving, empathy and love, no, they weren’t even seeing the dying woman in bed, they were seeing an ECG, a fast rhythm and a medical intervention.
I don’t think they were blinded by science, more, likely, lack of confidence.
And this is what I often experience.
In healthcare, you need, whether a doctor, nurse or therapist to have a degree of confidence in your abilities and perceptions. This is not over-confidence, but more, that ability, associated with humility to take into account the views of others and accept when you might be wrong.
Is it that bad to provide the level of care and support to someone that will allow a good death if the person does not die at that moment or time?
This care is person-centred, sensitive, fair, equal, compassionate; it takes into account the wishes of the dying person as well as those of family and friends, it gets rid of visiting times, rules and regulations that might otherwise come between the disease and the person (or family).
Yet, this lack of confidence, frequently in very clever, learned and able people causes catastrophe.
Relative: Doctor, I believe my mum is dying, I want us to stop the antibiotics/fluids/oxygen/etc.
Doctor: No, I feel we should continue, there might be some improvement (aka other blandishment/platitude).
Every year when I meet junior doctors, these are they guys who have just finished medical school; within a few months of qualifying I ask, ‘Have you ever seen a patient who you know is dying, provided the wrong (inappropriate/excessive) treatment?’
The answer is very often – yes.
They, just out of training, with more experience of being a non-medic than a doctor or clinician seem to have a perception relating to end of life that their consultant who might have 10 or 20 times the years and experience seems to miss.
They often don’t say anything as they are lacking the confidence through their inexperience, ‘What do I know? I’m just out of A-levels.’
This is matched more often and more worryingly by the man or woman, the boss-man, with decades of experience who fails to acknowledge that death is imminent, and I suspect even if they do, it is this critical aspect of confidence that gets in the way.
I don’t think you can teach clinical confidence; equally, for those who have made mistakes in their careers – in the worst scenarios leading to patient harm, confidence can be dinted forever.
How do we support or improve this situation?
Maybe we should start in school – primary, not medical, that is.
I believe the best teachers are those with the greatest humility, those who are happy and open to demonstrate to their children that they don’t know an answer, or if they have the wrong answer that being wrong is OK.
What is bad is doing nothing about it.
What is right is admission and remediation.
Heck, you can always Google for a start.
Perhaps the future generations, familiar with the requirement for experience to blend with knowledge, which is essentially a reliance on the powers of the internet, collaboration and multidisciplinary working is the only way to perceive the world.
Picasso and his Cubist buddies were on to something.