Unforgivable: Secret ‘do not resuscitate orders’

end of life care

Maybe it’s me, possibly I’m being over sensitive because I live with multiple sclerosis – a chronic disease for which there is, as yet, no proven cure. But, on the other hand, perhaps many share my horror and revulsion at the secret imposition of ‘do not resuscitate’ (DNR) orders by many doctors dealing with patients who are close to the end of their lives.

These orders are given to prevent other doctors from attempting cardiopulmonary resuscitation (CPR) if the patient suffers a cardiac arrest or stops breathing.

It seems that, in the UK alone, in the region of 40,000 patients a year are having DNR orders placed by doctors without their families ever being told. And, make no mistake, these do not include so-called ‘living wills’ in which patients themselves give instructions that they do not wish to be resuscitated.

A national audit of dying patients has highlighted a failure to tell relatives of plans put in place for their loved ones. Conducted by the Royal College of Physicians, the audit of 9,000 patients reveals that one-in-five families were not informed that a ‘do not resuscitate’ order had been put in place.

As it is estimated that more than 200,000 patients are issued with DNR orders every year, this correlates to 40,000 a year not being told. What’s more, the study showed that in 16% of cases, there was no record of a conversation with the dying patient, nor explanation for the lack of one, about the decision to put in place a ‘do not resuscitate’ order.

Prof Sam Ahmedzai.

Professor Sam Ahmedzai.

Prof Sam Ahmedzai, chairman of the audit and author of recent guidelines on care of the dying, said: “When a decision (not to resuscitate) has been taken, it is unforgivable not to have a conversation with the patient – if they are conscious and able – or with the family.

“If a doctor was dying they would expect this. We need to show the same respect to our patients,” he said.

Prof Ahmedzai also stated that doctors also needed to be far more open with patients who were facing death, saying: “Not enough people are being told that there are biological indications they may be nearing the end of their lives.”

He explained that on average, patients had been in hospital five days before they were identified as likely to be dying, and half were dead by the next day. “This is being done very late in the day – as doctors we just don’t like to face up to it,” he said.

The Royal College of Nursing (RCN) also called for urgent improvements in end-of-life care, amid warnings of “abominable” failures to respect the needs of the vulnerable.

Amanda Cheesley, RCN lead nurse for end-of-life care, said: “You have to be a decent human being to look after people who are dying. A lot of this is about common sense – about what would you do instinctively. And we’ve terrified nurses into not doing things instinctively.

“It’s become about doing a job, a task, writing a form, doing a really good care plan – all of which are terribly important but we do need to use our common sense and our instincts more perhaps than some people do,” she said.

Worryingly, NHS England said the audit showed some improvements. Really? Just how bad was it before? A spokesman said: “Although this audit presents a snapshot of end-of-life care within NHS hospitals, there are clear variations in the support and services received across hospitals and areas where improvements must continue to be made.”

 

Counting the cost of prescription medicines

medicines

Taking regular medications is a fact of life for everyone with a chronic illness such as Multiple Sclerosis and for a host of other conditions as well. It is not a hassle, just something you have got to get on with in life.

In my case, Lisa uses a tablet organiser to prepare a week’s worth of doses in advance and then makes sure the correct medications are taken at the right times. That is important as, left to my own devices, sometimes a dose can be forgotten or suddenly I might start wondering if one has been missed. Using her system, my beloved can not only make sure all doses are taken but also put my mind at rest about them.

It was with some trepidation that we visited the health centre here to get our first Spanish prescriptions but it all went quite smoothly using a combination of Spanish and French (thanks to Cray Valley Technical High School in 1960s) as the doctor that day did not speak any English.

Today I took the prescription for both of us to our local pharmacy and waited patiently to hear exactly what we would be charged. Back in Wales all prescriptions are absolutely free to everyone but I knew that in England prescriptions cost £8.05 (10.92€/$11.86) per item.

Not everything was in stock but would be obtained and delivered to our home, the same afternoon. Yes, you did read that right, the same afternoon. Now that is a level of service not available in the UK. There, ‘next day’ would be the best that could be expected.

So, at last, we got to the amount that needed to be paid. The pharmacist said “15 and 46” which, I thought, meant 15€ for one person and 46€ for the other. The credit card was handed over. Not being familiar with prescription charges here, and so expecting the total to be 61€, it was extremely pleasant to find that the total amount to be paid was just 15.46€ (around £11.40 or $16.79).

Thinking back to last year, when we were checking out whether or not we could afford to live in Spain, the loss of free prescriptions was something we had to consider but with such a low monthly cost it really is not an issue and is a fraction of the price we’d be paying for just Lisa’s medicines if we lived in England.

At this stage, we’d both give the Spanish health service an overall A++ award with prescription charges rating A-. That would compare with the NHS at B overall with Welsh free prescriptions at, of course, A++. As far as the English charge, words fail me; it is nothing but a ludicrous tax on being ill.