To stop, or not: that is the question.

Yesterday (Friday) I asked Twitter a question.

I am never sure whether that is a wise, but, when you are sitting in a room, office or clinic, alone, and a you can’t find the answer to a clinical scenario it seems reasonable.

The question I asked of colleagues was whether there was a way to help prevent older people, many of whom are in the last years of their lives from being taken to hospital when they fall.

Work relating to this is the focus of Advance Care Plans – something I have been thinking about for several years.

It seems that there are some scenarios that are more straightforward than others.

For example, if you have a person who is say, in their late 80’s, living in a care home with advanced dementia, to the point where they are unable to conduct a meaningful conversation, require assistance with washing, dressing and eating and also have the usual host of associated conditions that people pick-up with a lifetime of getting-on, say, diabetes, heart disease and, atrial fibrillation just to begin, this being frequently the ‘average’ care home resident; I’ll even give them a name; Sadie*.

Working on a plan, which is ideally drawn-up with Sadie before she becomes too unwell to be involved in the decision-making is ideal; yet, frequently this doesn’t take place and the discussions happen with sons and daughters, husbands and wives, often after a series of disastrous attendances at A&E or admissions to the hospital where Sadie traumatised and potentially damaged from each episode of x-ray, blood test, intravenous cannula, catheter, bed and ward moves and so on, reaches a point where Sadie’s son or daughter decides, ‘No more!’ and issues an ultimatum that the next time their mum becomes unwell she must not be taken to hospital.

The above is facilitated by the presence of an insightful GP or other community doctor who can fashion a document to support the statement, acknowledging the subtleties and complexities of the process.

What does, ‘No more!’ mean? Sadie falls and does her self no obvious harm, Sadie develops pneumonia and becomes drowsy, she vomits blood or struggles to breathe; she has pain in the abdomen, an apparent headache or itchy rash.

You see, the possibilities are endless. It is hard to predict every situation.

What if Sadie falls and breaks her arm? (After we have done everything humanly possible to minimise her risk of falling – address antipsychotics and sedative medicines, postural hypotension, foot-wear, spectacles and so on.)

Hospital transfer might not be ideal, but a little traction and a Plaster of Paris can significantly improve the pain; Sadie might not understand the purpose of the pot and pull it off, but at least you can try.

All of this is taking me to the question I posed.

It has to do with planning ahead and a small area of medicine and law that no one has as yet addressed.

Here is the scenario.

We will stick with Sadie.

Sadie has advanced dementia; in the past she has had a stroke and high blood pressure and now she has an erratic pulse – we call this atrial fibrillation.

The condition itself, where the atria of the heart ‘fibrillate’ that is, function in a chaotic, inefficient manner is not particularly harmful although it can make your overall heart function decline (leading to breathlessness, for example), it is however the association that is more sinister –

Because the chambers of the heart don’t contract normally, the blood flowing through them is disrupted and can collect leading to the development of a clot; if this clot breaks-off, it can cause a stroke, which is of course potentially devastating.

The best way we know to treat this condition is through the use of oral anticoagulants – Warfarin is the most well-known, although it can be tricky as it requires regular monitoring through blood tests – to make sure the dose achieves the sweet-spot of thinning the blood adequately to avoid clots but not too much to cause spontaneous bleeding.

A new class of drugs, originally called ‘novel anticoagulants’ (NOACs) and now, that they aren’t that new, ‘direct oral anticoagulants’ aka ‘DOACs’ have overwhelmed the marketplace; these pills don’t require the constant monitoring and in general are safe although there isn’t a ready agent to reverse their effect as with warfarin.

Because of the ease of taking – it is a set dose to be taken daily, and also, there is no need for blood tests, these tablets suit older people, especially those who struggle with the different daily doses that are sometimes required for warfarin to keep it in at the right level.

Remember however, despite their ease of use, they can’t be ‘reversed’ easily.

Anyway, it isn’t really the reversal that is the point, more, the guidance from the viziers of medicine in the UK, NICE, who advise that anyone taking an oral anticoagulant who experiences a fall and head injury should have a CT scan.

This guidance is completely reasonable.

Being on a blood thinning treatment increases your risk of bleeding and a knock on the head can cause internal bleeding which can initially be undetected physically but show-up on a scan which can then lead to treatment and in some situations, neurosurgery (the archaic burr hole).

The complexity is, that if a person has significant or advanced dementia, not only can the transfer to hospital be traumatic, let alone the medics’ attempts to take blood and organise a scan for someone who is often frightened, anxious and lacking understanding of what is happening, invariably, even if there is some bleeding, there is no treatment other than stopping the medicine.

You might think, well, if that is the case, why take people to A&E in the first place; leave them on the medicine if it is benefiting them (for people who have atrial fibrillation and a previous stroke the benefits of anticoagulation are significant – something like a 60 per cent reduction in the risk of future stroke) and if they knock their head as there is nothing that can be done, leave them in the care home.

Into this mix is the defensive nature of care homes, all of which are very vulnerable to litigation and threats of foreclosure by the Care Quality Commission (CQC) and also criticism by the coroner if someone dies after falling and banging their head – which in most parts of the country is associated with a requirement to refer a death, even in someone you are expecting to die, to the coroner.

Care homes, paramedics and doctors don’t want to fall foul of the CQC, or the coroner and the usual response is to take Sadie to hospital, even though everyone knows it is the wrong thing.

Do you see the conundrum?

The medicine can help keep Sadie ‘well’ and as independent as possible in the care home, able to achieve whatever quality of life is possible within the confines of her condition, yet it can also result in a harsh episode of ambulance conveyance which is ultimately futile.

Ironically, doctors could determine that it is no longer safe for Sadie to take the anticoagulant which would remove the risk of hospital transfer, this would however increase her risk of dying from a stroke.

No one I know has an answer to this.

Acting in a person’s best interests is the phrase we use when we can no longer apply the more valid, ‘What Matters to You’ – yet, frequently best interests come into conflict with legality and protocol.

You might wonder how I could squeeze this question into a tweet; well, this situation is so well-known to many people in healthcare that I could sum it up in one sentence and wait for answers.

Unfortunately, no one has an answer and our patients, their relatives, the paramedics, care home and emergency department staff continue to exist in a limbo where doing what is right is increasingly more challenging.

I would like to hear what people think, particularly if you are a coroner or a high-court judge.

*Sadie was the name of a much-loved great aunt who lived on Bellwood Street in Glasgow.