The judgment given in the case of Janet Tracey’s estate vs Cambridge University Hospital NHS Foundation Trust* contains lessons and warnings for doctors and nurses. There are fundamental implications, and there are subtle insights into how we go about discussing DNACPR decisions.
The judge wrote, in conclusion:
I would, therefore, grant a declaration against the Trust that it violated Mrs Tracey’sarticle 8 right to respect for private life in failing to involve her in the process which led to the first notice [the first DNACPR form].
The following should be read on the understanding that i) I am not a human rights lawyer, and ii) I was not there, so the comments that I make on the communication that took place between doctors and patient/family are based only on what is written in the judgment. However, any messages or misunderstandings that I take away from the judgment as a physician with a general interest in resuscitation are likely to be repeated across the country. Also, the specifics of this case were in many ways atypical, and in thinking about what this judgment means for the rest of us, I have considered more common clinical scenarios – where patients are usually older, and perhaps on a more rapidly deteriorating path.
A mandatory discussion
The principle has now been established that not being given adequate opportunity to discuss your resuscitation status is an infringement on your ‘right to privacy’, that is, the right to lead your life how you choose without undue interference from the state. This is Article 8 of the European Convention on Human Rights. Thus the manner of dying becomes a subject of discussion that patients must be engaged in (unless it can be shown, clearly, that to do so would cause harm – see below). It sounds perfectly reasonable, and such engagement is already best practise. Respect for autonomy demands it, and few doctors complete DNACPR forms without trying their best to seek the patient’s view.
But there are exceptions, and this judgment appears to belittle a doctor’s right to use their discretion in extreme circumstances. It makes mandatory a discussion that in many cases is not relevant to the patient – that is, the option of trying to bring them back to life after they have died.
Patients with end stage disease admitted to hospital with a deterioration are often identified as entering the terminal phase. They will die naturally, and with good palliation they will die comfortably and with dignity. Cardiopulmonary resuscitation (CPR) has no place in this paradigm of care. It is never going to be effective, helpful or kind. But CPR is there, it is ‘available’, and the judgment seems to have made it illegal not to discuss its merits with all such patients (and/or relatives in the case of mental incapacity).
My assertion that CPR is often an irrelevant option may sound paternalistic. This requires examination, because there appears to be a discrepancy between how important doctors feel CPR is, and how important patients or families feel CPR is.
The diminishment of a symbol
Experienced hospital doctors will have seen scores of patients fail to recover from CPR, and will have witnessed many CPR attempts that are cut short after a minute or two once the insanity of the situation becomes clear. To many doctors CPR has become an unwelcome and frequently harmful intrusion on the natural deaths of frail or end-stage patients who receive it ‘by default’ – because their teams did not discuss it openly before the cardiac arrest occurred. All patients who die in hospital will be subjected to CPR unless a DNACPR decision has been made first. Thus the accumulation of many such regrettable experiences leads to an overall impression that CPR is over-used. Its apparently transformative potential – to bring people back to life – is diminished.
However, for patients and families CPR means something else. It is the very last hope of salvage when the patient’s medical condition has deteriorated. It can be symbolic of a person’s ‘will to live’ or their ‘fight for life’. It cannot be dismissed as an irrelevance, even if it will surely not work. This, I think, is what the judgment reveals and concretizes into legal precedent – CPR, for all its fallibility, is too important to patients and families not to be made aware of its existence and its withholding.
Most in the medical profession know this already and accept it, but my concern is that in those circumstances when it is truly inappropriate there will be anxiety on the part of the doctors that DNACPR has not yet been discussed with the patient or the family. I worry that in such cases CPR will be given to avoid the accusation, after the event, that the patient’s human rights were overlooked. The doctor’s instinct, and all their experience in such situations, may be overridden by a defensive mindset.
I will now look at some specific lessons contained in the judgment.
Documentation of the discussion
Janet Tracey did not want to talk about her end of life care, according to the doctor who wrote the first DNACPR order. He is quoted as saying,
“Mrs Tracey did not wish to engage in discussion relating to her care and prognosis. On occasions when I attempted to initiate discussions with Mrs Tracey regarding her treatment and her future she did not want to discuss these issues with me.”
This impression is backed up by the patient’s husband who indicated that,
‘Mrs Tracey felt “badgered” by the attempts of the doctors to discuss her end of life treatment with her.’
Ultimately however, the doctor did achieve some sort of interaction with the patient. In the judge’s words,
‘It was Dr ______’s evidence that he broached the issue of DNACPR with Mrs Tracey, explained what it meant and that she nodded to indicate her agreement to it. He then completed the first notice.’
She nodded. This was sufficient, in the eyes of the doctor, to be taken as agreement. However, the judge is concerned that,
‘If Dr ______ had such a conversation, it would have been of importance to note the same both on the DNACPR Notice and in the medical records. I am unable to accept that the absence of such a note is a result of no more than poor record keeping.’
‘There is nothing in the medical/nursing records which suggests any agreement to DNACPR by Mrs Tracey. The tenor of entries prior to 4 March 2011 indicate that Mrs Tracey either did not agree or requested that any such discussion take place in the presence of her husband or daughters.’
‘In the absence of any documentation and in the light of what is known about Mrs Tracey’s view on the issue of resuscitation around the time of the first Notice, I am unable to accept Dr ______’s evidence that he spoke to Mrs Tracey about resuscitation prior to the implementation of the first DNACPR Notice.’
The judge does not believe that a DNACPR discussion took place. There was nothing to back it up.
Distress vs harm
The average doctor’s defence for not discussing DNACPR in a situation where it is plainly inappropriate to resuscitate, is that it would be positively unkind to bring it up with the dying patient. To steer the conversation towards a procedure after death that cannot work seems perverse…and may cause distress. This case hinged around the issue of distress, or a doctor’s fear that to discuss DNACPR explicitly would cause distress.
We have seen how Janet Tracey appeared unwilling to engage in discussions about death. It is reasonable, in my opinion, to assume that forcing her to talk about it would have caused distressed. In light of the concern that to insist on a discussion would be unkind, the judge accepts that,
‘It may well be that such a concern also caused him to spare her a conversation which he knew was likely to cause distress to a suffering patient.’
But the judge does not feel that ‘distress’ is sufficient reason not to insist on that discussion. Hence,
‘In my view, doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them.’
‘Many patients may find it distressing to discuss the question whether CPR should be withheld from them in the event of a cardio-respiratory arrest. If however the clinician forms the view that the patient will not suffer harm if she is consulted, the fact that she may find the topic distressing is unlikely to make it inappropriate to involve her.’
Only if we feel that the discussion will truly cause harm does there appear to be an exemption;
‘There can be little doubt that it is inappropriate (and therefore not a requirement of Article 8 to involve the patient in the process if the clinician considers that to do so is likely to cause her to suffer physical or psychological harm.’
In these cases we will need to be very clear, in the notes, as to our reasoning that harm may occur. I am not sure how we as doctors will articulate that reasoning. When does distress become harm? Isn’t any distress harmful, in the context of the dying phase? Or should we accept that dying is distressing anyway, and a little extra distress is a small price to pay for obtaining our patients’ full opinion on the matter? We need to come up with an answer to this.
It seems that the doctor failed to be clear with the patient’s family member about what DNACPR actually was. After having a discussion about it with a doctor she left the hospital, but then looked up what the decision meant in more detail, on the internet. Having realised that her mother actually being deprived of a potentially life-saving intervention she came back to the team with a challenge, and the order was rescinded.
The judge writes,
‘…whether in a wish to spare her the harshness of a graphic explanation of CPR or a belief that in using words such as ‘slip away’ he was conveying the entirety of such a scenario, I believe that the entirety of the position was not fully understood by ______”
This rings true. It is very easy not to go into great detail, and there are several reasons for this. Primarily, I believe, doctors who have already made the medical decision that CPR is not appropriate are unwilling to describe its ins and outs because to do so is, once again, irrelevant. It distracts from the subject of most importance, how to manage symptoms in life, not what to do after death. If ‘graphic’ descriptions are given, it can begin to feel positively gratuitous. However, one lesson that this judgment provides is that we should make very sure that the relatives of our patients do understand. That may require some unpleasant conversations, and not a little emotional harm. We must learn how to do this well.
The judge seems to make some provision for difficult cases. It should be remembered that the focus of this case was a mentally capacitous patient’s apparent unwillingness to be involved in discussions, and the doctors perception that to engage her in the discussion would be psychologically harmful – the judge was not convinced about this, and did not find written evidence in the notes to support the doctor’s case. The judge writes,
‘I recognise that these are difficult issues which require clinicians to make sensitive decisions sometimes in very stressful circumstances. I would add that the court should be very slow to find that such decisions, if conscientiously taken, violate a patient’s rights under article 8 of the Convention.’
Finally, this judgment can be read the other way round. Having established that talking about one’s treatment after cardiac arrest is important enough to require legal protection, we must consider the situation where CPR is performed when the patient would not have wanted it. The legal principle of anticipatory discussion applies bith ways, as highlighted in a Resuscitation Council statement released shortly after the judgment. Basically, it is as irresponsible to permit, through failure to discuss, inappropriate CPR as it is to withhold it. They write,
‘The RC (UK) considers that Article 8 may be engaged and potentially breached also should a clinician not consider an anticipatory decision about CPR with or for a patient who is at clear risk of dying or suffering cardiorespiratory arrest. Failure to consider a decision about CPR or to ascertain the patient’s wishes in relation to CPR (or the views of those close to the patient without capacity) may leave such a person at risk of receiving CPR that they would not have wished to have and that could have been avoided had the matter been afforded appropriate consideration and discussion.’
The message is – think about CPR early, talk about it bravely but sensitively, and write everything down.
* A case was also brought against the Secretary State for Health, in relation to his possible duty to ensure a standardised DNACPR policy for the NHS. I will not go into that part of the judgment here, although in summary, the appeal court found that there was no obligation on him to impose a centrally designed policy.
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