Putting it in writing

A watchdog committee has found that hundreds of people are being given inappropriate end-of-life care, and a substantial number being resuscitated against their wishes.

(What follows is a lengthier article than usual, but we feel it may be of interest to a sufficiently large number of people to justify it.)

The National Confidential Enquiry into Patient Outcome and Death reviewed the care given to 585 acutely-ill patients who ended up having a cardiac arrest. The watchdog concluded that cardiopulmonary resuscitation (CPR) had wrongly become the default setting. Details of whether or not to give CPR was recorded in the notes of only 122 patients in the study of hospitals in England, Wales and Northern Ireland. Of these, there were 52 cases where doctors had performed resuscitation on patients who had explicitly said they did not want it.

So are living wills the answer, or are more extreme measures needed? A reader writing to the EXIT Euthanasia Blog asks:

“I am 79 with a Living Will which asks that I not be resuscitated. I note that some doctors are ignoring some patients’ wishes in this respect. I also note that one senior lady has had a tattoo Do not resuscitate done on her breast. Is this the way to go? A medallion with DNR on it might be an attractive alternative – but I expect that could go missing. Before I book into the tattoo parlour I’d appreciate any comments.
Yours faithfully, Reg Jackson

It sounds like a pretty good idea if you want to be sure . . . but the reality is sadly a little more complicated.

Let’s take a look at living wills to start with, and a patient’s advance medical directives generally. If you make a clear statement, refusing certain treatments should certain situations arise, that is binding in law (as long as people know about it). But there are many ‘and, ifs and buts.’

The first requirement is that it is clearly a competent statement. If you’ve written something that you probably had no understanding of and/or weren’t capable of making such a decision, the refusal is null and void. A good way to address this is to discuss your wishes with your doctor at the time of making your living will and, if possible, get him to sign it to say that you have discussed it. (Of course, if you don’t have capacity anyway, or it was reasonable to believe you were acting under duress, it would also be null and void.)

Secondly, the refusal must be applicable in the circumstances. To illustrate this principle as applied to DNR instructions: unless it is written by a doctor, a DNR usually has provisos. For instance, you might say that, should you be hospitalized with a terminal condition from which there is little chance of recovering an independent lifestyle, you would not want to be resuscitated. These provisos are necessary because many people, especially if they are relatively young and healthy, would want to refuse in such circumstances but would also (quite understandably) want to be resuscitated if it was a sudden heart attack or accident from which they would reasonably be expected to recover completely if given rapid resuscitation. The law requires that any advance refusal of treatment therefore is applicable in the circumstances that have subsequently arisen.

If you have a specific diagnosis and can anticipate likely treatments offered, it’s a cinch. Otherwise you may well have to specify a number of possible scenarios.

There are other niceties, witnessing the declaration and so on, but those are the two main legal crunch conditions: competently made and applicable in the circumstances.

So to come on to tattoos, you can see that a tattoo is unlikely to fulfil the legal requirements. Does that make it useless? Well the answer is, not quite. It provides a general idea of your likely wishes in any given circumstance. So it needs to be taken into account by law, but is not binding.

But there are two further major hurdles for any advance refusal of treatment.

1) Generally speaking, there has to be enough time for the medical team to make a reasonable and competent decision as to your wishes in the circumstances. When it comes to an emergency – you’ve ceased breathing and there are only moments to decide whether to attempt resuscitation – the first legal duty is to attempt to stabilise you. A living will in the bottom of a handbag or even a tattoo is not likely to stop doctors in their tracks. This is where such patient-led initiatives can fall down: if a person is in hospital and has discussed DNR with the consultant, then a properly considered and authorised DNR can be added to the patient’s status – 0ne that those tempted to respond to an emergency would be obliged to recognise – but a non-authorised or invalid DNR cannot be taken with the same seriousness.

Similarly, if one is in hospital, the medical team is aware of your living will and its specific instructions, then, should the relevant circumstances arise they will be bound to follow your wishes in the matter. That is very different to an emergency, even though the principles (of respecting patient autonomy) are the same. And for good practical reasons. But this leads us on to . . .

2) They have to be aware of your living will. A medallion with words to the effect that “I have signed a living will” would possibly be more helpful than the words “Do Not Resuscitate.” Not binding in itself, but alerting staff to a document which they should consult before taking any considered decision.

If you are lying helpless, it might be quite difficult to start shouting the odds and demanding that doctors go look for your living will. This is where a third party can come in useful. You should ideally have copies of your living will (made after you duly signed it) lodged not only with your doctor, but with someone who is close to you and can be supportive of your opinions in such things. Simply by going along to the hospital and making a loud fuss by your bedside, while waving a copy of your document, should be enough to get the medical team to take note.

Finally, there is the question of interference in an attempt at self-deliverance. There are steps you can take to minimise the likelihood of emergency teams trying to resuscitate you following a rational suicide, but they are beyond the scope of this article. We refer readers to the book Five Last Acts II (see top right of this page), which covers both methods and legal / medical precautions.

For a fuller examination of using living wills, and a set of documents to choose from, these are provided free to persons joining the Society as part of the New Member’s Pack.

BBC News: NHS ‘too quick to resuscitate acutely ill people’
Gran has ‘Do Not Resuscitate’ tattoo
Medical tattoos on the rise: Report
Medical ink trending up — but can tattoos save lives?
A living wills page
Five Last Acts II

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