Yesterday I made the observation that as our nation becomes increasingly secular it will lose the elements that have made it socially caring and compassionate and today, before the electronic ink is fully dried, the news features a man with Down's syndrome with a DNR/DNAR (Do Not Resuscitate - Do Not Attempt Resuscitation). Neither the man or his family knew anything about the DNR, which was discovered by a carer!
Whilst I am aware, and have experience, of DNR situations, more often than not they come from the person themselves and come about through discussion with the patient and family. The fact that the The instruction not to attempt resuscitation in the event of a cardiac or respiratory arrest was issued without his family's knowledge is bad enough but the cherry on the cake is that his being Down's was one of the contributory factors in the decision being made.
As one might expect, the East Kent Hospitals University NHS Foundation Trust, is claiming that it acted within the guidelines and so has done no wrong. With this in mind I reached for the DNR file I have and drew, with no difficulty, these four points (from the Resuscitation Council):
1. Effective recording of DNAR decisions in a form that is recognised by all those involved in the care of the patient.
2. Effective communication and explanation of DNAR decisions where appropriate with the patient.
3. Effective communication and explanation of DNAR decisions where appropriate and with due respect for confidentiality with the patient’s family, friends, other carers or other representatives.
4. Effective communication of DNAR decisions between all healthcare workers and organisations involved with the patient.
The four points make it clear that as neither the patient, the family and friends or the care home in which the man resides knew anything about the order - points 2,3 and 4 all appear to have been missed and so the process was not complete and the order (apparently in place indefinitely), regardless of how much 'advice' occurred on point the first, is extremely flawed and concernmaking! The paperwork says no discussion with the next of kin took place because they were "unavailable". Oddly the family say they visited, "virtually every day!". Not only that but a carer from the home also visited from time to time too - so surely there were contacts from both family and other caregivers available at times (perhaps this points to a heavy workload and unavailability of hospital staff?)
I'm sure that there are medical issues, for no medical team enters into this lightly or uncaringly, but there is the grim spectre of 'quality of life' (a subjective term indeed) and the devaluing of life due to disability that hang over this. That the family consider the man to have a good quality of life at the time and the fact that he recovered makes this a now defunct order - but, if the press are correct, it isn't!
And the reasons in full for the order:
Down's syndrome, unable to swallow (PEG fitted*), bed bound, learning difficulties (dementia)
There's much more about this but for me there are deeper issues here, namely:
i. The way that disability is regarded, especially in a DNR situation, with such low regard (quality of life and contribution to society has been mentioned here).
ii. The fact that many of the errors in this case can be explained away by the fact that our wards have increasingly more patients with a decreasing number of staff.
iii. The mistaken belief that every resuscitation attempt results in a win. Resus' to discharge rates are amazingly low (about 15% of the total population - a figure which has remained fairly consistent regardless of therapeutics and technology).
iv. That there are many DNRs in place, many of these are patient-initiated and are in place in a 'family aware' setting.
We haven't heard the end of this I'm sure. What need need it to find a balanced approach to examining it and the underlying errors (and flawed attitudes) and make some changes. After all, had this not come to like a crisis might well have become a tragedy (and perhaps still will be for others)!
Never thought we'd regard Down's as a terminal illness :-(
1 comment:
This was a big issue on Radio Kent this morning. The family live in Kent.
They had a family member and the family solicitor on, and the sense of outrage from both at the DNAR treatment of this man was palpable.
I leads me to the question of who gave these people the authority to make such decisions?
If I were terminally ill, I would like to be given the choice of whether or not I would want to be resuscitated. We know from our experience with both of my spouses parents that DNAR decisions were discussed with us, but only after the parent had lapsed into a coma and were unable to discuss it for themselves.
It really puts relatives into a hard place, do you say yes and allow them to die with grace or do you say no and potentially allow them to suffer on with no quality of life until they beg to be released?
We objected to the DNAR and thankfully, both died peacefully without reawakening. But it was a dilemma that needed to be faced and thought about and prayed through. We think we got it right, but thankfully the decision was taken out of our hands.
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