Family experiences of decision-making
The law about the role of the family in decisions, and how to act in a patient's 'best interests' is clear (see 'Decision-making: the legal...
What is resuscitation? Resuscitation is shorthand for Cardio-Pulmonary Resuscitation [CPR] – this involves compressing the patient’s chest in order to pump blood through the heart and brain if the patient’s heart stops.
What is a ‘DNAR’? If a patient is not for cardio-pulmonary resuscitation this is recorded on their medical records as: DNR, DNAR, or DNACPR. (‘Do Not Resuscitate’, ‘Do not Attempt Resuscitation’, or ‘Do Not Attempt Cardio-Pulmonary Resuscitation’ – these all mean the same thing). The DNAR notice only means ‘Do Not Attempt’ cardio-pulmonary resuscitation. It does not mean that other interventions will not be attempted or continued, and it does not mean that the patient should be treated with any less care.
Why might a DNAR notice be considered? A DNAR may be placed on the patient’s records if the patient would not have wanted such intervention (e.g. some people have said that if they were severely brain injured they would prefer to be ‘let go’). Alternatively, sometimes doctors judge CPR to be futile or burdensome. Survival rates are not good after CPR: overall only around 10% of patients who receive CPR survive long enough to be discharged from hospital after a cardiac arrest and in many cases the person is likely to have further brain injuries. Clinicians do not have to offer CPR if they think it would be burdensome or futile, but they should discuss the issue with the family – e.g. to try to assess what the patient’s attitude might have been.
Family members we spoke to often had strong reactions to the whole question of DNAR. When we first met Fern she was outraged that clinicians thought her partner might not be ‘worth’ resuscitating and that DNAR had been placed on his records without her knowledge. Daisy similarly initially resisted DNAR for her brother and was furious that it had been suggested. But later she, and the whole family, took a different view.
‘We realised that we didn’t think he would want to be resuscitated. We had been asked that question previously and said ‘yes’ [resuscitate]. At the very beginning’.
[Interviewer: So what had changed? Where are we now.?]
‘Uhm about two years [later]. And I suppose seeing his experience and seeing other people’s experience . I think life and death had different meanings for us then.’
Other families, where the issue had been discussed, accepted DNAR, but still found it very upsetting. David said: ‘that was when my dad broke down outside the hospital, because basically things were hitting home then, that she ain’t coming home.’
Most accepted a DNAR because they thought that it accorded with their relative’s own wishes and they thought resuscitation would do more harm than good.
Some people thought that a DNAR notice did not go far enough, and were concerned about on-going treatments.
Although DNAR is the subject of a great deal of discussion and anxiety, in fact patients in a vegetative or minimally conscious state are not particularly vulnerable to cardiac arrest – at least not after the initial injury period in intensive care and any initial major operations.
We only interviewed one person where the issue of DNAR had become relevant in the long term. Fern’s partner had a cardiac arrest after DNAR had been placed on his records, but after Fern had successfully campaigned for it to be removed, and so he was resuscitated.
The law about the role of the family in decisions, and how to act in a patient's 'best interests' is clear (see 'Decision-making: the legal...
Sometimes a decision is taken that a patient should be for 'No aggressive treatment of infections', 'Do Not Attempt Resuscitation' this can be quite a...