Month: June 2014

Notes on a judgment

notes on a judgement2


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.


Clarity, brutality

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.


An allowance

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.’


The obverse

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.

notes on a judgment


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Bed X – an explanation, not an excuse


Earlier this month Dr Kate Granger closed the NHS Confederation annual conference with a powerful speech. In it she described being referred to by a nurse as ‘Bed 7’. These two syllables seem to embody uncompassionate care. ‘Bed’ represents all that is awful about hospitalisation, apart from the illness itself. It represents horizontality, frailty, powerlessness and diminished autonomy. It brings to mind the issue of resource, the perennial pressure on beds, and the ‘blockers’ that cannot be housed in the community after they have recovered. And the number, ‘7’, shows how people can become just one of many on the conveyor belt of sickness…a chore, a passing burden…in the minds of those who have forgotten what it is to act with compassion. Then, reflecting on this simple phrase, I realised something – I have may well have committed the same crime.

Can there be any excuse for referring to a patient by their bed number? The following, if not an excuse, may be an explanation.

When I started work in an A&E department I was immediately reminded of the days and evenings I had spent working as a waiter. The comparison seems trivial, but there are real similarities.

As a waiter I received a seemingly never-ending series of requests, backed up by the additional pressure of my customers’ variously expressed frustration or annoyance. I had to decide who should be served first, or who should have their order taken next according to how urgent I thought their need was. Sometimes an unexpected piece of information would arrive which would lead me to prioritise one table above another even though they had taken their seats half an hour later (they had to get to a show, for instance). This might involve debasing myself before the (typically) knife-wielding chef, trying to convince him to let a table jump the queue. Sometimes a problem in the kitchen would force me to go and explain what had happened to the customers, while trying to avoid apportioning the blame to my colleagues. My mind would be teeming with parallel problems, but the hours would pass quickly and by 1 o’clock in the morning the room would be empty, the tablecloths thrown in laundry bins and the tips divided. Then, having eventually gone to sleep while the adrenaline was still subsiding, I might dream about tables, or tumbling forks, or I might see myself holding six plates, unable to move, glued to the carpet, while customers clamoured for food and shouted at me.

So, if we can accept that something as unimportant as a couple waiting for their steak can be compared to a sick patient waiting to be assessed in A&E, other similarities come to mind.

Just as table numbers dictated my movements in the restaurant, in A&E the code by which I organised myself, or was organised by the nurse in charge, related to cubicle numbers. Until I met a patient for the first time they would have no name. Their back story was unknown to me, they were no more than an item on a list, a set of notes in a tray. And until I met them for the first time their ‘handle’ was just a cubicle number. I would have read the initial triage assessment, I would be formulating an approach in my mind, but it would all be under the heading of simple, impersonal number.

Standing outside the curtain, as I responded to questions about other patients, I would signify my intention by saying, “Yes, but I’m just about to see cubicle 9.” If this was overheard it might have sounded insensitive. Sometimes, I am sure, it was overheard. But surely no-one would expect a health care worker to use the term to a person’s face!

It is conceivable that a health care worker might forget to dissociate the person they are just about to see from the label with which their mind has been ‘handling’ them. Perhaps, in an environment where the patient is new (such as A&E), such a slip, such thoughtlessness, might be forgiven. But for the patient on the ward who has already been in hospital for several days, and who has demonstrated that they are a whole person, and who is known to staff, such an error is less understandable. But for some staff the patient will be new. They may have just returned from a three day period off duty, and during handover the name, in the absence of the context of human contact, may not have displaced the easier label…the bed and bay number.

What is familiar to the nurse or doctor, through their many days on the ward, is the patient’s location. In much the same way I knew the floor plan of my restaurant. My allocated sector for the night might include tables 9-18. I would immediately associate table 11 with that difficult approach around the foot of the stairs, or the tight squeeze by the potted palm, while laden with full glasses and plates. The bed number is not just a number, it is a location that the nurse has worked around for days and nights on end. It means something to the nurse, but it means nothing, of course, to the patient.

This (quite possibly flawed) analysis of human behaviour can only serve as an explanation, and is not an excuse for a lack of compassion. The thing that should stop the doctor or nurse translating a mere label into human communication is an understanding that the patient will be hurt by being referred to in such impersonal terms. This requires just a moment’s reflection, reflection that should become habitual for someone working in health care, but a moment that might, possibly, be squeezed out by the pressure of work. Or by laziness. Or by dehumanisation. But it only takes a moment.

(And by the way, if the unfamiliar nurse were to say ‘Hello, my name is…’, the trap would immediately be avoided.)


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‘I wouldn’t want it but…’ – commentary on an important paper


do unto others title

This study, published by the open access journal PLOS1 last week, approaches but does not solve two important questions: Why do doctors provide intensive treatment at the end of life when they would never accept it themselves? And how can they propose such treatments when evidence suggests that patients do not want it?

The paper begins by presenting general data on public opinion about preferences at the end of life, such as,

‘More than 80% of patients say that they wish to avoid hospitalizations and high intensity care at the end-of-life, but their wishes are often overridden. Most patients at the end-of-life prefer care that is focused on augmenting their comfort and dignity…’


‘Studies show that the end-of-life care patients receive depends not on the patients’ care preferences or their advance directives (AD) but rather on the local health care system variables like institutional capacity and individual doctors’ practice style’

So the authors asked over a thousand young doctors about their attitudes to advanced directives (ADs), which in the US are an established method of allowing patients to determine, broadly, what sort of treatment they receive in the context of critical or incurable illness. The questions cast ADs in both a positive and a negative light, and examples included:


The 2013 group were also asked to fill out a simulated AD themselves, which look like this:

  1. Choice To Prolong (full-code status): “I want my life to be prolonged as long as possible within the limits of generally accepted medical treatment standards” (or)
  2. Choice Not To Prolong (no-code): “I do not want my life to be prolonged if the likely risks and burdens of treatment would outweigh the expected benefits, or if I become unconscious and, to a realistic degree of medical certainty, I will not regain consciousness, or if I have an incurable and irreversible condition that will result in my death”.

Their answers were compared to a large group of community doctors who had been asked the same 14 questions about ADs in 1989, just as the Patient Self Determination Act was about to be passed. The two groups are quite dissimilar, and although I did not find the comparison between two eras that enlightening, the authors did find significant differences in 3 aspects:

‘Compared to 1989 cohort, the 2013 doctors (a) were unlikely to believe that AD will lead to less aggressive treatments even for patients who do not have an AD (b) had greater confidence in their treatment decisions if guided by an AD and (c) were less worried about legal consequences of limiting treatment when following an AD.’

The contemporary respondents were generally supportive of the idea of ADs, and did not feel that use of ADs posed a threat to the fundamental duty of doctors, the preservation of life, in other contexts. They felt that ADs can enhance autonomy and can legitimise the therapeutic decisions that are taken for patients.

The study also found that doctors’ attitude to ADs varied according to their specialty, the calculated Average Advance Directives Support Score (based on how they responded to the 14 questions) being lower for radiation oncologists, for example.

As to what the doctors would want for themselves…they clearly, and predictably, wouldn’t want prolonged intensive treatment.

‘The majority (n = 954 or 88.3%) of the 2013 doctors opted for the Do-Not-Prolong Life (no-code status) for themselves when terminally ill. Only 11.7% of the doctors opted for the Choice-to-Prolong Life (full-code status) for themselves. Doctors who were less supportive of AD were more likely to opt for full-code for themselves…’

The final line suggests that those who would rather be resuscitated are less supportive of engaging patients in discussions on their preferences.

In the discussion the authors explore possible reasons for the disparity between doctors’ general acceptance that the intensity of treatment should be moderated when the effects of chronic, incurable disease draw patients the into the last year or months of life, and what a actually happens – which is quite different. The reasons are largely based on conjecture, and do not relate to the data presented in the paper (which I can never get away with when I try to publish papers!). They come up with 4 possible explanations –

1) Doctors have been witnesses to the undesirable burdens of treatment: ‘…it is likely that doctors recurrently witness the tremendous suffering their terminally ill patients experience as they undergo ineffective, high intensity treatments at the end of life and they (the doctors) consequentially wish to forego such treatments for themselves’

2) …but they are unrealistic when it comes to their patients’ chances: ‘…doctors tend to be very optimistic and overestimate the prognosis and life-span of their patients. This results in escalation of high burden technological interventions until it is clear to all stakeholders that the patient is dying. Sadly, this clarity often comes in the last few hours to days of life, resulting either in terminally ill patients experiencing highly medicalized death in hospitals or in very late referrals to hospice care.’

3) The system default to intensive treatment: ‘…the culture of modern biomedicine with its default set to maximal interventions for all patients, irrespective of the effectiveness of doing so. This may foster implicit biases in doctors causing them to override their patients’ autonomy when the patients’ choices are in conflict with what the doctors believe will benefit the patient.’

4) And in the US at least, money is involved: ‘…the current fiscal system rewards hospitals and doctors for medical procedures and providing high-intensity care to terminally ill persons and does not reimburse them for conducting prophylactic conversations that elicits values and goals of care and what matters most to patients and their families at the end of life.’

There is much more that could be said here. In the field of acute/general medicine doctors meet patients who would benefit from being engaged in a conversation about end of life care on a daily basis. In the UK this would not necessarily be expected to result in a detailed AD (which in my experience remain rare), but perhaps an agreement on resuscitation status and a general inclination about where they stand on prolonged organ support. Other reasons for failing to broach end of life scenarios might include:

Non-holistic focus: perhaps specialists are seeing patients as diseased bodily systems that need ‘managing’. This is age old accusation, but one that still bears scrutiny. The PLOS1 one paper includes an interesting observation in the introduction;

‘there was a twelve percentage point increase in Medicare beneficiaries who saw more than ten different physicians in the last six months of life, especially medical subspecialists…’

It may well be the narrower one’s area of specialisation, the harder it is to see the whole picture.

First contact: if you are one of those ‘ten different physicians’, it is hard to steer the conversation directly into the realms of pessimism. When seeing patients for the first time, it is natural to want to focus on the positive. It requires some confidence to be open and honest about the utility, or futility, of treatment from the outset.

Precedent: …and why did none of the previous 9 physicians bring up the subject of dying? It is quite common to meet patients who are clearly near the end of life, and who has been under other specialists, but who have never been engaged on the subject of end of life preferences. Sometimes you begin to wonder – well, if they didn’t bring it up, why should I?

A trial of therapy: because the default approach, quite rightly in medicine, is to try to prolong or preserve life, an intellectual compromise that appears to justify intensive treatment is the ‘we’ll try a period of aggressive support, but if it clearly isn’t working it may be time to discuss comfort measures’. In this way patients can easily move into an intensive medical environment, a move which sometimes acquires a momentum of its own. I have written about this is ‘5 days – a tale of escalation creep’

Finally, a question that challenges the paper’s presumption – are we really subjecting patients to treatment against their will? I don’t think so. I don’t know of any patients who have been taken to intensive care, or given chemotherapy, or undergone surgery, against their wishes. It is more likely that we are not facilitating patients in the difficult and subtle process of articulating what they truly want from the medical system into which they have entered; a system that can do just about anything, unless you say no.




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