Resuscitation decisions

Death eclipsed


Finding the right balance between active treatment, which may include surgical or semi-surgical interventions, and palliative care, can be difficult. The two can go on in parallel, of course, but often a full palliative care assessment and plan takes place when the primary medical or surgical team have drawn a line under their management. Ideally, palliative care expertise would be provided alongside active treatment, if it is recognized that the medical condition is incurable, death is likely in a certain time-frame, and there are symptoms that need to be alleviated. In the real world, perhaps due to resource limitations, perhaps due to fear of confusing families, or perhaps because it is very difficult to ‘do’ palliative care while patients are being taken away for various procedures, the two approaches tend to occur sequentially. If a patient dies shortly after such an intervention, there will be regret that the right balance was not achieved. A potentially ‘good’ death was eclipsed by hospital-based interventions that ultimately brought no benefit.


In this scenario I describe a patient, Thomas Franklyn, for whom the correct balance between active treatment and palliation was difficult to find. It is fictional, and I have deliberately kept the ‘procedures’ and the ‘disease’ unnamed, so that its principles can be applied in any medical area.


Part 1

Complaint: Excerpt from letter, written by family member to the Trust:

‘…we do not understand why Thomas had to go for all those procedures, including one to stop bleeding that occurred as a complication, when he was clearly dying and suffering. The doctors asked him how he felt about having them, but he was in no state to give an answer. By the time the palliative care consultant came to see him he was so weak, any chance of going home had passed. In the end he died in the hospital which was not what he wanted. It was obvious that he was dying from the beginning, but because of these decisions his last few weeks were spent waiting, recovering from procedures or in pain… ‘


Part 2

View from the ward sister:

You can often tell when death has become inevitable. The patient engages less, eats less, sleeps more. There weren’t the classic signs of imminent dying in Thomas’ case, but we all knew it was not far off. So on the wards rounds we mentioned palliative care, and the doctors agreed it was time. But at the same time there were more procedures that could be done, not for the sake of it, but because they were designed to ease certain symptoms, or reduce the risk of infection, and ensure a bit more time. We asked Thomas if he was happy to have them – he was quite capable of agreeing and signing consent forms – and he said yes. He got through the first two procedures pretty well, but the after the third there was a bleed, and we rushed him down one night to sort it out. They stopped it, but he was never the same afterwards. A lot weaker, far less engaged with us and the family. He never really recovered. Palliative care came to see him again, and because our team now made it clear that there was nothing else to be done from their side, they started full end of life care… a syringe driver etc. I could tell the family weren’t happy. They had set their hearts on him getting home, had prepared a room downstairs. But he deteriorated too quickly. It was so sad. Then, two months later, we received the complaint…


Part 3

View from Foundation Year 1 doctor (FY1):

I’ll never forget this patient. I discussed the case with my educational supervisor and wrote a reflection on it. The main challenge, for me, was balancing that sense of diminishing returns from the procedure against the time it was taking to arrange them, and the discomfort they caused. We all knew he was dying, and to be fair my consultant discussed the possibility that the procedures might be futile, but on the other hand if they worked, it was possible that Mr Franklyn would survive an extra two months, maybe three. That would have been a real gain, for him. But it didn’t work out.

The thing is, I had a sense that it wouldn’t work out. Mr Franklyn was getting weaker every day, not eating well, and I had a bad feeling. In the discussion about futility, which we had in a meeting room one morning before heading out to do the ward round, I was asked my opinion. It was my second month as a doctor. I was really pleased to be asked, and I said that I thought he looked very frail and wouldn’t tolerate any complications well. But as soon as I started talking, I thought – what do I know? I haven’t even seen a patient with this before. I was very happy to accept the consultant’s view, as she must have seen hundreds. So we talked to the family and the patient, who was still alert enough, and were honest that the benefit could be good, but that it would take more time to get the procedures done. They agreed. We didn’t say they were high risk, I don’t think my consultant would have suggested them it they were. But then there was a complication, and it appeared to speed up Mr Franklyn’s dying. I remember going home thinking – I knew it! I was right that time, but next time I might be completely wrong. You have to respect experience.


Part 4

View from the consultant:

At the end of the day, it looks like a bad call. I was very careful to involve the whole team, nurses, the family, and the patient of course. But in these situations where you’re dealing with quite specific diseases and specialised procedures, people look to the clinical leader in the team. They are the ones who have seen it before, who have the deepest experience. The patient, Mr Franklyn, was passive… by which I mean weakened by his illness and happy to receive advice from a team he trusted. It isn’t right or fair to dump all the information, the pros and the cons, on a patient and wait for a yes/no answer. People are different, but they often need to be guided. That is our job. I guided him towards the procedures that, if successful, would have allowed him home for a good couple of months. One of them went wrong, as we know.

What about the palliative care side? That was a criticism, that we – I – didn’t get pall care up sooner. Well we did, but Mr Franklyn was being prepared for procedures, getting transfusions, having antibiotics to cover the procedures, having regular blood tests… the situation wasn’t really stable enough for them to initiate a calm management strategy. So I said, look, we’re in the middle of everything, we’ll let you know when the procedures are done. We were proactive on agreeing an escalation plan and resuscitation parameters, but even that was a bit tricky. What if he deteriorated just after, or during, an intervention? Should we let him go without any circulatory or breathing support, or try to re-stabilise? Can you take a patient with a obviously terminal condition to ICU to get them over an acute, procedure related complication? ICU may have a view different to the ward team? If you decide no, you should tell the patient as they go for the procedure that if they deteriorate they may never wake up again, as we will let them go. Who is going to agree to that? (In the event he did deteriorate, with a bleed, and that required all hands on deck for a while.)

What did I learn? The more I see of these sad situations, the more I am inclined to say to patients, yes, there are things we can do, and they may work, but we are not going to stop the underlying disease. So do not be afraid to draw the line. Tell us when you have had enough. We, the doctors, may not be the best ones to tell when that time has come, despite all our training and all our experience. It may sound like I am absolving myself of responsibility, but sometimes it is true.


Part 5

View from the palliative care consultant:

I often ask myself the question – how emphatically should I make the argument against further interventions, if I feel that the patient is likely to die very soon? This requires very careful analysis, and each case is different. I  am asked to see patients under many adult specialties – neurology, cardiology, general surgery, gastroenterology, gynaecology – and each one has its specialised procedures, its own evidence and knowledge base. Although I am confident that I can recognize the approach of futility, I am not always right, and I have seen lives extended almost miraculously, by fairly straightforward surgical or endoscopic or radiological interventions. They can work. So it is not justifiable for me to come onto a ward and say, wait, slow down, leave this poor man alone, he is ready to go home to die. On the other hand, I, and the specialist nurses, and perhaps ward nurses, may need to be guardians of a patient’s dignity if we feel the specialist team is having trouble seeing the wood for the trees. It’s a balance. Each time. With Mr Franklyn, events show that we were wrong, and I was wrong. If I had stepped in assertively after the second procedure, recognizing that he was continuing to go downhill, we may have been able to get him home, albeit for a week. That would have satisfied the family, and Mr Franklyn. We lost that opportunity.

This cases adds to the sum total of experience. It also confirms that while we do our best, we cannot control the disease, nor can we control the outcomes of every procedure. Complications do occur. They will occur. But usually, they do not, and the patient gets the best out of the procedure.

We involved the family in every decision. The patient too, but he was becoming disengaged. We decided to see the treatment strategy through – perhaps there was an element, in the primary team, of ‘now we have started we should finish’. And it didn’t go as we hoped.

The complaint, when it arrived, was upsetting. But it shows – and this is a lesson – that although we thought the family were alongside us with the decision-making, they weren’t, not entirely. We flattered ourselves that there was consensus, but perhaps we convinced ourselves of that because we knew what direction we wanted to go in.





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Keeping the options open

There are many reasons why hospital doctors can be slow to engage patients on the question of DNACPR. This is one of them.

A frail patient agrees that a DNACPR form should be put in her notes. Two weeks ago she was admitted with severe pneumonia, and survived a week in ICU on a ventilator. Although she beat the odds, it was made clear to the family that if her chest deteriorated again, she would not benefit from being taken back to ICU.

The DNACPR decision is made a few days after she arrives back on the general ward, once the receiving team have taken the measure of the situation. In the event of a cardiac arrest her pulse might well be regained several minutes into the ALS algorithm (many are, after the elephantine doses of adrenaline that are given), but she would be very unlikely survive to discharge. Indeed, based on the therapeutic ‘ceiling’ set on her discharge from ICU, the option of returning to those same life support machines that are required to bring someone out of a post-cardiac arrest situation has already been ruled out.

DNACPR is clearly appropriate. The form is written. Everyone agrees, including the patient.

Then she vomits up a bowlful of blood. It looks like it could be a stomach or duodenal ulcer. Her blood pressure drops, but improves with some rapidly infused fluid, then some packed red cells. But the blood keeps coming, and it is clear that she needs an endoscopy to confirm the diagnosis and, hopefully, treat it. She is too frail to be brought down to the endoscopy department; her breathing is shallow, her blood pressure is labile. She needs to be stabilised in ICU. A phone call is made. The ICU registrar attends the ward. She flicks through the notes,

“She’s clearly not an ICU candidate. It’s all over the notes.”

“That was written in case of a respiratory deterioration. This is different.”


“It’s a bleed. It could be reversed. I accept that she shouldn’t receive multiple organ support, but she needs two or three days of close monitoring, perhaps a bit of vasopressor support* if her BP drops to keep the kidneys going. If the endoscopist can stop the bleeding she could be out of there in a day and back on the ward.”

“It rarely happens like that.”

“I’m not comfortable with the idea of her bleeding out here. Yes, she is frail, yes if she arrests, I accept it’s over. But there may well be a straightforward, treatable lesion there.”

The registrar withdraws to liase with her senior. He attends. He reads the notes, takes in the DNACPR form, heads in to look at the patient, and emerges from the curtained bay.

“I think we should honour the DNACPR… keep her comfortable…”

The medical consultant stares, trying hard to disguise his disgust.

’Honour the DNACPR’! The DNACPR has nothing to do with her treatment in this situation. It is not a symbol designed to ensure instant palliative care. This is precisely why we don’t do DNACPRs when perhaps we should, because of this sort of….”

And he goes on, building up steam, accessing his frustration. In the end a compromise is reached… but the point has been made, and it is worth considering in more detail.

The question to consider here is – Do DNACPR forms materially influence a patient’s chances of being treated aggressively in the event of an emergency? On the face of it, they should not. The DNACPR is there to make it clear to whoever happens to be on the ward at the time, that the crash team should not be summoned. Death should be allowed to occur naturally. It says nothing about endoscopies, monitoring on the ICU, short term vasopressors… Moreover, every version of the DNACPR form I have seen emphasises that it is not irrevocable, it can be rescinded if circumstances change.

Yet, surely, there must be a close correlation between DNACPR status and ‘not for ICU’. The chances of surviving an ICU admission are driven by the same physiological parameters as those that determine survival after cardiac arrest. Looking at the figure below**, you can see how CPR sits at the apex of medical interventions, just above ICU.


Although I cannot find the studies to confirm this, in my experience, most if not all patients who are not for CPR are also not for ICU. The two go hand in hand. Therefore, by filling out a DNACPR for my patients, I am also making a statement, that he or she should not be considered for admission to ICU. But what if that is not the message I wish to convey? I can make an explanatory note; I can use a better ‘form’ (eg. ReSPECT, recently promoted in the BMJ, yet to be used nationwide). But I cannot overturn the impression that a DNACPR form makes on many colleagues, that the death of the patient should not come as a surprise, and that efforts to reverse an unexpected but life-threatening problem should not be strenuous.

‘Honour the DNACPR.’ I have heard that phrase. It is because those six initials carry so much weight, and may exclude the possibility of life-extending measures, that I, and others, are sometimes slow to start the conversations around resuscitation.

The larger point I take away from this scenario is that forms, even subtle ones like ReSPECT or other treatment escalation processes, are ill-suited to the multitude of ways in which patients can change suddenly. Although they come with the caveat that they should not be used as blanket statements, they can be read as headline summaries about how to approach patients. Different doctors will read them in different ways. To keep the options open, many doctors will choose to delay allowing those headlines to enter the notes.


* a powerful drug infused to keep up the blood pressure

** Taken from Dahill et al, Improving documentation of treatment escalation decisions in acute care  BMJ Qual Improv Report 2013;2

[Fictional scenario]


For more on the reasons why DNACPR decisions can be delayed, explore this booklet…

Batteries are low: the work of engaging in DNACPR discussions

During a talk I gave to an audience of palliative care specialists two weeks ago (St Barnabas Hospice, Worthing, thank you for having me), I wondered how they found the energy to engage patients in discussions about dying all day, every day. The comment was undoubtedly naïve, because that’s not what they do, and the many positives that come from managing dying well must recharge the batteries. But for those like me who work in the acute hospital setting, and whose job it is to recognise the approach of dying, a form of exhaustion can occur. Sometimes this leads to missed opportunities.

Imagine a typical ward round in general medicine, or even within a narrow area like my own (liver disease): there might be three new patients with clinical features to suggest that rapid deterioration could occur at any time, which on a background of chronic disease or frailty indicates that resuscitation would be futile. It is my job to start a discussion about the place of CPR and escalation of care. Three conversations. Take a deep breath.

In the ideal world, where patients with chronic disease talk about their wishes well before admission to hospital, the door would already be ajar. Perhaps a documented plan (eg. ReSPECT, described in this week’s BMJ, UFTO, or UP*) would be produced from an overnight bag, or from a relative’s pocket. This paper, a symbol of prior reflection, would allow us to compare their goals with the facts of the situation.

It’s 9.15AM. The team is full of energy and caffeine. We have X patients to see, some of whom are on the road to recovery, some of whom have already been recognised as dying, some of whom have uncertain futures.

The trainees are attentive. They are learning how to do this (aren’t we all?). First patient. I complete my assessment, pause, then open the discussion. I won’t rehearse the words here – my version is not perfect, and it varies. If it does not vary then it shows I am just repeating some learned lines – an impression that it is important to avoid. (Interestingly, a patient involved in the BMJ’s article commented, in reference to a particular form of words, it was ‘as if this is what they had all been taught to say.’)

So I open the patient’s mind to the possibility of dying (be it suddenly or gradually). Perhaps their next of kin is present. They react in their own way. A faraway look is not uncommon. Sometimes a film develops over the eyes, glistening in the morning light of the nearby window. Poetry has no place here, but as a human, I am affected by the impact of my words. We reach an understanding – we agree – CPR is not the right thing to do. If the patient or a relative disagrees, we park it, and arrange to speak about it again, later. I walk away, unsure how to close the interaction. A hand on the arm, a swish of the curtain (‘or would you like me to keep it closed?’). There is no comfortable way, to be honest.

Outside the bay we complete the DNACPR form – put the bureaucratic stamp on it, for the benefit of others who might be called to see the patient in an emergency.

“Ok. Where to next?”

We see a couple more patients. Then the registrar says, “We probably need to discuss escalation with the next one, she’s —–.” We review the history, the data, and agree, yes, we need to anticipate the worst, even if, crossing fingers, it doesn’t happen during this admission.

I use subtly different words, but move in the same direction. This time there is a more overt reaction. And a longer discussion. The thought of dying has never crossed her mind. Nor her husband’s. Part of me brims with anger – she has an incurable, gradually worsening condition, she has been seen by her GP and in specialist clinics umpteen times over the last year; why has no-one brought this up? Why does it have to be me, now? I could just leave it. She might not deteriorate after all. Why not leave it until she does… but if that is at 3AM, and a foundation year doctor is asked to see her, and she refers to a registrar who has never met the patient, there will be hurried decision making, the patient will probably not be conscious enough to express their wishes, an ICU consultant will be asked to make a call based on scanty information…  bad medicine. It must be done now.

We finish. It took half an hour. Not long in the life of the patient, relative to the magnitude of the subject under discussion. But very long in the context of a ward round. Never mind. The time must be taken.

We see some more patients.

Then we come to the third.

I enter the bed space. The visit proceeds along routine lines while I make a general assessment. Then I reach a fork in the path. Now is the time to level with them. But I am not up to it. I have left two patients in mute distress (possibly; how could it be otherwise?). I have re-formulated the words to keep them fresh and sincere and specific to them. I have struck a balance between brutal realism (I’m not one for drawing a vivid picture of CPR, but the act has to be mentioned) and sensitivity. I have asked myself, as we continued our progress along the ward, ‘am I bring too pessimistic here? If the other doctors they saw didn’t bring up dying, perhaps I shouldn’t either…’) – and I make a decision. Not today. Another day. Let’s talk about it on Wednesday. I haven’t got the energy. Or I’ll ask to the registrar to do it, she’s good.

“So are they still for resus?” asks the nurse.


“What if they deteriorate?”

“We’ll cross that bridge when we come to it. Sorry.”

And so we move on, hoping that the worst doesn’t happen before we find the time and the energy – a very specific form of energy – to broach the subject.



* ReSPECT = Recommended Summary Plan for Emergency Care & Treatment; UFTO = Universal Form of Treatment Options; UP = Unwell and Potentially Deteriorating Patient Plan. According to the BMJ this week, In Torbay, where Treatment Escalation Plans were introduced to replace DNACPR forms in 2006, ‘30% of elderly patients now arrive [at the hospital] with a TEP.’



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When death is not the end


This week’s report about a nurse being disciplined for failing to ‘revive’ a clearly deceased nursing home resident, has caused consternation. According to the description given, the woman was ‘yellow, waxy, almost cold’. But a rule mandated that the nurse on duty should commence basic life support and call an ambulance. For her to be punished seems perverse*.

The big fail here is not so much the rule (which is to maximise safety and ensure that no opportunities are lost to reverse acute deterioration), but the fact that the woman did not have a community DNACPR order. Such an oversight could be written about at length, and the difficulties doctors, families and patients have discussing the subject have been explored on this blog.

The other problem this case reveals is our general confusion about the transition between life and death. There is a phase in dying, perhaps fifteen minutes (longer if hypothermic – I am happy to be corrected) where vigorous efforts to restart the heart might result in more life and acceptable cerebral function. For this to happen, the heart and other organs need to be in reasonable condition. If death was sudden, re-opening a coronary artery might be all that is required. But if the patient had been ailing for a year, or succumbed to a spreading cancer, nothing will work.

So, when a nurse or a member of the public comes across a seemingly dead person, what tells them whether it is right to start basic life support, or respectfully cover their face? If the situation is at all unclear, it seems there is only one defensible answer – try to resuscitate.

When I did Advanced Cardiac Life Support training years ago I was fascinated (and disgusted) by a paragraph in the manual that described situations where resuscitation was clearly inappropriate. These included decapitation and separation of the body into two halves (sorry to make you queasy, that’s what it said; I’m not sure if the current version still includes this). It may have mentioned rigor mortis. But it did not talk about the ‘waxy’ or ‘almost cold’ person.

Faced with such ambiguity, people are quick to refer back to earlier times, when community doctors or wise neighbours were called to see people in their homes, whereupon they calmly observed that the patient had died and that there was nothing more to be done. Now, such acceptance can only occur if, prior to death, there has been a series of clear discussions and agreements (all documented) regarding resuscitation, transfer to hospital, or escalation of care.

This has come about because modern medical techniques can do much to delay death. The burden of heroic interventions has to be considered of course, hence the need to think about such things before they happen. However, the medical reflex is to treat and save. The reflex applies to all people by default, even those who appear too frail to benefit. Thus, the nursing home has a ‘reflex’ that patients found unconscious and without a pulse should be rushed to hospital unless there is a DNACPR order in place.

This evolution in our ability to preserve life has diminished the validity of the experienced nurse’s, or lay-person’s, impression. He or she is no longer trusted to recognise established death. In the case reported this week, the diagnosis of death was, presumably, only valid if made by paramedics, or by the A&E doctors who might have received her (intubated, cannulated, perhaps with intraosseous access lines protruding from both shins).

There is an argument that only those who have been trained to certify death should be allowed to bear the responsibility, and it is interesting to note that the nurse in this report has subsequently received such training. However, a part of me wonders how it is that death, which has been part of our experience since homo sapiens began spread across the globe, is still such a mystery that one needs to go on a course to recognise it.

Most ward nurses, or trainee doctors who have led a crash team, will have been in a similar situation. From a doctor’s point of view – the crash call goes out, you run to the ward, and observe nursing colleagues performing basic life support. Collateral information soon paints a fuller picture – the patient was last seen alive four hours ago; they were ‘stone cold’ when the nurse came to routine observations at 6AM; clearly, the patient died peacefully in their sleep. But, in the absence of a DNACPR order, a crash call had to go out. As the medical registrar you must now decide whether to call the resuscitation attempt off immediately, or continue for a few minutes just to make sure that there is no return of spontaneous circulation (a heartbeat and a pulse). Most doctors in this situation continue until they are sure the patient is truly dead, as they will not have known the patient and do not feel confident in stopping the attempt immediately. Some of the reasoning here is defensive. You could be criticised for saying ‘stop’ without having gone through the algorithm.

It seems to me that there is still a place for the healthcare worker’s common sense opinion, especially if they know the patient – ‘She has died, let’s ring the next of kin… no, don’t call the ambulance, don’t start compressions. They have died.’

Recent BMA/resuscitation council guidelines do, to some extent, take such ‘common sense’ into account –

…there will be cases where healthcare professionals discover patients with features of irreversible death – for example, rigor mortis. In such circumstances, any healthcare professional who makes a carefully considered decision not to start CPR should be supported by their senior colleagues, employers and professional bodies’. [see previous post on this here]

Despite this, and even with the support of medical colleagues, while nurses feel vulnerable to censure, only those with great confidence will risk not calling the crash team when they find a dead patient.


* We have very few details, so the arguments and conclusions drawn from the case here are generalised






Switch it off


Detail from Andrus, by Franz Kline, an Abstract Expressionist who died from rheumatic heart disease aged 51. Andrus was the name of his cardiologist. On display at the Royal Academy, London until 2nd January 2017.



The story covered by the BBC and several newspapers about 71-year old Nina Adamowicz, who asked to have her pacemaker turned off in the context of advanced heart failure, caused a flurry of interest last week. There was concern, quickly put to bed by Dignity in Dying among others, that deactivating the device amounted to assisted suicide.

Most, I think all, of the doctors I observed commenting on social media failed to see an ethical problem here. The patient had mental capacity. All patients have a right not to receive treatment. A pacemaker is ‘treatment’. The patient asked for it to be turned off. That’s that.

Said to be the first case of its kind in the UK, the scenario is not novel, and cardiologists in the US have considered this dilemma very carefully in recent times. A consensus view produced by an expert panel (2010) was that,

‘Legally and ethically, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.’

and that,

‘The right to refuse or request the withdrawal of a treatment is a personal right of the patient and does not depend on the characteristics of the particular treatment involved (i.e. Cardiovascular Implantable Electronic Devices – CIEDs).’

This is clear and makes sense, but as in all aspects of medicine, the reality can be more challenging, both for patients and their doctors. Certainly for Ms Adamowicz and her cardiologist it was not straightforward, because despite her consistently stated desire (clearly and movingly related in this 13 minute interview on radio 4), she had to await the outcome of a specially convened ethics committee.

Most de-activation requests concern implantable defribrillators (ICDs), devices that fire electric shocks when the heart arrests or comes close to it. Switching these off in the context of approaching, natural death appears uncontroversial, as patients can suffer unnecessarily if they experience such shocks in their final minutes or hours.

For patients whose heartbeats depend on constant impulses from their pacemakers, the situation is different. There is a possibility that their heart will stop as soon as the device is deactivated. The connection between medical intervention and death is stronger, and however robust the ‘legal and ethical’ defense for such an act, doctors are bound to be wary of putting themselves in such a situation.

I have not been able to confirm Ms Adamowicz’s cardiological diagnosis, but in her own words, she was indeed ‘100%’ pacemaker dependent. At night she would often feel her heart slowing to a dangerous rate, she felt herself beginning to slip away, and then the device would kick in and bring her back. Complete dependence would explain why she ‘described her body as feeling heavy and [  ] a little nauseous’ after the twenty-minute procedure to turn it off in October 2015.

In the largest descriptive study published in JAMA, only 6 of the 150 terminally ill patients with CIEDs fit this ‘dependent’ category. However, patients whose underlying heart rate was too slow survived for a significantly shorter time than those who were receiving ‘tachycardia therapy’ – median zero days vs 3 days. The type of underlying rhythm problem therefore matters, and physicians should be aware that their patients could die quickly.

Interestingly, in this study, less than half (43%) received a palliative care consult, and only 3% were subject to a clinical ethics review.

This fascinating study led to a New York Times article which highlighted the discomfort some cardiologists feel when asked to switch off devices in the ‘pacemaker dependent’. A survey (abstract only) of 787 professionals involved in deactivation found that more were comfortable ‘with personally deactivating’ with ICDs than a pacemaker (56.7% vs 34.4%), but that a minority equated the intervention to euthanasia (11%).

This minority opinion is worth examining. Are those doctors being squeamish? Are they placing their discomfort, moral instincts or religious beliefs over patients’ autonomy?

A case study published by The Centre for Bioethics and Human Dignity described a 69-year old lady with heart block who was pacemaker dependent. She decided to have her device switched off – not in the context of advancing or terminal illness, but because she no longer wanted to live. She was clearly depressed, and it was even suggested that she had not wanted the pacemaker implanted in the first place. Although under the impression that her heart would stop immediately, it was clarified that,

Though she demonstrates no intrinsic rhythm when the rate of the pacer is turned down to 30 beats/minute on testing, most patients do develop some rhythm after several seconds of not beating at all.’ So, death would not be immediate.

Both the experts responding to this scenario find it challenging, essentially because the patient is not dying. The first emphasises the need to exclude or treat depression, as it may be impairing decision making, but concludes,

‘turning a pacemaker off may be ethically justified if 1) continued treatment is inconsistent with patient goals, 2) death is imminent from either cardiac or non-cardiac medical complications, and 3) the patient is refusing or has refused other forms of life-sustaining treatment.’

But then,

‘…others believe that, because of implantation into the chest cavity and the necessary wiring to an internal section of the heart, an implanted pacemaker becomes an integral part of the cardiovascular system, similar to an aortic graft or a cardiac valve replacement.  Using this latter conceptualization, it becomes ethically problematic to render a pacemaker non-functional.’

The second expert is even more cautious,

‘While it would be permissible for a patient to refuse pacemaker insertion, it is an unresolved question whether it is permissible to shut off a pacemaker which is sustaining life without causing intolerable symptoms.

‘Some would argue that it is permissible because it is artificial technology, comparable to a ventilator.  Most would argue that it is not permissible because the pacemaker, once inserted, becomes part of the person, and shutting it off is akin to assisting in a suicide.’

So, what looked like a very uncontroversial dilemma at first glance last week, is perhaps not so straightforward. Whereas decisions to stop ventilators or withdraw artificial feeding have been subject to legal scrutiny (eg. Miss B, Tony Bland), the legal basis for the deactivation of fully internalised prostheses or devices remains a grey area. If the patient’s wishes are known, as in the case of Nina Adamowicz, decision-making is much easier. A point emphasised in the consensus statement referred to above is that those implanting cardiac devices should have ‘should have a clearly defined process to withdraw therapies‘, ie. they must talk to their patients about it at the outset, and again if their health begins to deteriorate. As ever in optimal end of life care, it’s about frank conversations taking place before crisis begins to impair the capacity for communicating a person’s wishes.



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New guidance on DNACPR – clearer, between the grey areas

A new version of the BMA/Resus Council/RCN resuscitation guideline is out, and it makes for interesting reading. The ideal circumstance, where a patient with capacity is well enough and has time enough to engage in a discussion about the merits of CPR, is well described. It is in the emergency setting, where capacity fluctuates, time runs short and loved ones are terribly stressed, that difficulties can occur. It is for doctors in those situations that the guideline has some new things to say.


The need to inform (or try to inform)

Even when CPR has no realistic prospect of success, there must be a presumption in favour of explaining the need and basis for a DNACPR decision to a patient, or to those close to a patient who lacks capacity.

The guideline incorporates the Janet Tracey and Carl Winspear rulings – the requirement to inform patients with mental capacity, legal representatives or relatives about DNACPR decisions as soon as possible. Although keeping those connected to the patient involved in decision-making is an obvious mark of good practise, it is possible that appropriate DNACPR decisions are delayed while the ‘informing’ stage is arranged and undertaken. To those of a defensive disposition, it has felt, post-Tracey, as though DNACPR decisions cannot be put in the notes until that stage has been completed. The guideline makes it very clear that this is not the case,

…it is important that the decision is not delayed (and the quality of care of the patient compromised thereby) if the patient’s family members or other carers are not contactable immediately to have the decision explained to them. A timely decision must be made in the patient’s best interests in order to provide them with high-quality care, and that decision and the reasons for making it must be documented fully. All reasonable effort must be made to contact those close to the patient to explain the decision, preferably in person, as soon as is practicable and appropriate.  

If the relatives are not contactable (including by phone in the middle of the night– a lesson learnt in the Winspear case), it is vital (as ever) to document your attempts fully.

My own take on the question how to ‘inform’, is that the task is far more complex than it seems. Most of us are not able to convey such a symbolically powerful decision without introducing the subject gently and framing it sensitively; the conversation may start as an explanation of what is going on medically, but depending on the relative’s response it may then become an exploration of the patient’s life and goals, or of the relative’s assumed role as permission giver in the decision-making process. The skilful doctor will find ways of reversing this misapprehension, but even in experienced hands the conversation can begin to feel like a request for assent.

However, if the going gets tough, it remains clear that…

It is not necessary to obtain the consent of a patient or of those close to a patient to a decision not to attempt CPR that has no realistic prospect of success. The patient and those close to the patient do not have a right to demand treatment that is clinically inappropriate and healthcare professionals have no obligation to offer or deliver such treatment.  

This is helpful legally, but not practically. Clinicians will continue to agonise and prevaricate in those (quite rare) situations where they are faced with opposition to the DNACPR decision. Rather than saying, ‘Actually, you have no legal right to demand CPR for your relative, I’m doing it anyway’ most doctors would say, ‘OK, well I can see there are strong feelings here, and I suggest we leave the question open and discuss it again later…’ It is easier to roll the decision over, than to do what guideline suggests… seek a second opinion.


Second opinions and the multi-disciplinary team

Main Message 12 says,

Where a patient or those close to a patient disagree with a DNACPR decision a second opinion should be offered. Endorsement of a DNACPR decision by all members of a multidisciplinary team may avoid the need to offer a further opinion

This is interesting. A second opinion (internal to the hospital) is a good way of addressing and diluting any sense of distrust that may have arisen. A fresh face is introduced, one who will, in all likelihood, agree with the assessment of the initial decision maker. I have certainly never altered a colleagues DNACPR decision when asked to help, but I have brought to the table a different form of words, and this can help give the family a different perspective.

More interesting still is the concept of the multi-disciplinary team in DNACPR decision making. What is this? The firm (a more fluid thing than it used to be)? A senior nurse plus the firm? Allied professionals such as physios and occupational therapists? Perhaps in non-emergency cases it might include an oncologist or surgeon, and in the gradually deteriorating patient, a palliative care team member.

As a consultant I make a habit of asking the ward team if they agree on DNACPR decisions, not least because it is good training to get them to think through the whole process, and its consequences. In my experience, senior nurses tend to have well developed opinions (usually tending to towards the opinion that CPR as largely futile, based on direct observation), while allied professionals are not used to being presented with the question, and not comfortable with it. Senior medical trainees are very good opinions, often more up to date in questions of cardiac rehabilitation or neurological recovery, while junior trainees are very much led by their consultant’s view.

Overall, I’m still not sure what the MDT is in acute scenarios (in the AMU for instance). This point in the guideline does however open the door to teams of doctors and nurses on post-take ward rounds making secure DNACPR decisions for frail patients without capacity, if I read it right.


When it is obvious

Main message 24 attempts to address a very common scenario – that of a patient who is clearly near the end of life suffering a cardiac arrest, in the absence of a recorded DNACPR decision. Hitherto the default has been to call the crash team and commence basic life support, followed by a few minutes of advanced life support until a suitable senior person (usually the medical registrar) arrives, assesses the situation, reads the notes or receives a summary from the ward nurse, and stops the attempt. This is the distressing end-point for many whom we, as doctors, as a health service, have failed by not addressing resuscitation at an earlier stage. The guideline says,

Where no explicit decision about CPR has been considered and recorded in advance there should be an initial presumption in favour of CPR. However, in some circumstances where there is no recorded explicit decision (for example for a person in the advanced stages of a terminal illness where death is imminent and unavoidable and CPR would not be successful) a carefully considered decision not to start inappropriate CPR should be supported.

This appears to protect the nurse or doctor who assimilates the situation quickly (and ‘carefully’) then says ‘No, don’t call the crash team’. This is a big step. We are talking ad hoc DNACPR decisions. The main text expands,

There will be some people for whom attempting CPR is clearly inappropriate; for example, a person in the advanced stages of a terminal illness where death is imminent and unavoidable and CPR would not be successful, but for whom no formal CPR decision has been made and recorded. Also, there will be cases where healthcare professionals discover patients with features of irreversible death – for example, rigor mortis. In such circumstances, any healthcare professional who makes a carefully considered decision not to start CPR should be supported by their senior colleagues, employers and professional bodies

It will take nurses of significant experience and confidence to actually do this.  Doctors are rarely present at the moment of death, so it would seem not to apply to them. I can imagine a patient arriving on ward with signs of advanced cancer who then arrests, or a frail person with severe pneumonia who suddenly deteriorates in the ED, before the admitting team has had time to finalise the DNACPR decision, or inform relatives. Whatever the intended scenario, whoever the intended actors, this new message seems to be an attempt to bring common sense into an area where perverse things have been done due a feeling that the default ‘For’ status cannot be reversed.

I wonder though, how often nurses or doctors will make this step… and if it will lead to any complaints.


Lost opportunity?

All this last minute, vexed decision-making can of course be minimised by pre-emptive discussions about the potential benefits of CPR. This guideline is intended primarily for those working in secondary care, and the last Main Message emphasises our duty in raising the question early,

Failure to make timely and appropriate decisions about CPR will leave people at risk of receiving inappropriate or unwanted attempts at CPR as they die. The resulting indignity, with no prospect of benefit, is unacceptable, especially when many would not have wanted CPR had their needs and wishes been explored.

This is welcome, but to me is discrepant with Main Message 2,

If cardiorespiratory arrest is not predicted or reasonably foreseeable in the current circumstances or treatment episode, it is not necessary to initiate discussion about CPR with patients

This was present in the guideline’s earlier version, and seems to be a missed opportunity to identify patients who are unlikely to benefit from CPR, even if the chance of them needing it in the next day or two is small.

According to this message, doctors can with a clear conscience avoid resuscitation discussions if they do not think cardiac arrest is likely. What’s wrong with that? Although some patients are clearly deteriorating in the context of their acute illness (e.g. severe pneumonia on a background of extreme frailty), and will clearly die soon, most are in that early period where the degree of reversibility is not clear, and although they might arrest, they might not. It is very easy (and I know this because I have done it, during weaker moments) to say, either internally or to one’s team, “They’re stable right now, there are no signs of imminent deterioration, let’s see how they are tomorrow and address DNACPR if it’s not going well…” In a frail patient this may be an abdication of responsibility, because even if there is only a 5% chance that they will arrest, you end up walking off the ward without having dealt with the consequences. I think the guideline should say, ‘If cardiorespiratory arrest does not appear imminent or likely, but nevertheless the clinical team would not be surprised if it were to occur, then a discussion about CPR should be initiated…’ (this form of thinking was first used to help identify patients who might be in the last year of life, as part of the Gold Standards Framework).

The NCEPOD study Time to Intervene recommended that a clear decision, either For Resuscitation or Not For Resuscitation, was made for every acute admission. This guideline does not entirely agree,

In its report on cardiorespiratory arrests in hospitals – Time to Intervene – the National Confidential Enquiry into Patient Outcomes and Death (NCEPOD) recommended that “CPR status must be considered and recorded for all acute (hospital) admissions, ideally during the admission process and definitely at the initial consultant review when an explicit decision should be made in this group of patients, and clearly documented (for CPR or DNACPR)”

As noted earlier in this guidance, although the NCEPOD recommends that CPR should be considered for all acute admissions, it does not mean that it is necessary to discuss CPR with all patients admitted to hospital acutely. There are some patients who are dying from an advanced and incurable illness, for whom CPR will not work and for whom a discussion is likely to cause them to suffer harm (see section 5).

The authors of the guideline clearly recognise that early DNACPR conversations are often poor in quality, so they row back from NCEPODs more aggressive approach. This is realistic, but is it too easy on us? Surely our aspiration must be to engage early. Due to the flow of patients through hospitals, form ED to AMU to the final ward, then perhaps to another final ward, (and perhaps even a third if beds are pressurised), the momentum behind the good intention to engage the patient/family on DNACPR can easily be lost. Partial response to therapy may take the pressure off, even though the patient remains at real risk of deterioration.

The idea of causing harm to patients by forcing on them a DNACPR discussion was considered in the Tracey judgement, and it was not regarded very highly by the judge as a reason not to engage. If physical or mental harm is likely, the judge agreed it was not right to have the conversation, but distress alone was not good enough. Therefore, is it not acceptable to shy away from the conversation in the first 48 hours just because it feels unkind. Nevertheless, it is down to us to determine where distress ends and harm begins; if we think our words may hurt, then we must explain our reasoning,

(Section 5) In a minority of cases, trying to explain a DNACPR decision to a patient for whom CPR will not work will impose an unnecessary burden by causing such distress that the dying person suffers harm, which may be physical or psychological… The reasons for not explaining a decision in such circumstances must be documented fully.



At first reading this document succeeds in steering clinicians through an increasingly challenging and legalistic area. It highlights the good things in the Tracey/Winspear judgments (respect for a person’s/relative’s right to be involved, where feasible, in life changing decisions) while trying to ensure that common sense prevails. Perhaps it could do more to encourage us to engage earlier, as I do fear that busy clinicians will tend to overlook DNACPR discussions unless there is a strong, external expectation that the subject must not be put off until the next day, or the next, or the next…



New Collection, ‘A Hand In The River’ (click image to explore)


DNACPR, The Secret Known To All

Why am I vexed when I wake up to the news that 40,000 dying people have DNACPR orders ‘imposed’ on them without their direct agreement or discussion with their relatives?

It sounds reasonable, doesn’t it, to expect 100% compliance with the expectation that DNACPR be discussed openly, especially after the Janet Tracey judgment which ruled that not to do so was a violation of human rights.

I hadn’t read the Royal College of Physician’s 100 page audit from which this story was extracted, but I have looked at it now, and it doesn’t mention 40,000 patients. 9302 deaths were audited, so the headline figure was an extrapolation, made real in newsprint. OK, so it may be fair to extrapolate. But what did the audit actually show?

Like all audits, it was a paper exercise. If a discussion wasn’t documented it was assumed that it hadn’t happened. The chair did say, when interviewed, that ‘busy doctors’ might not have had time to make notes, but that excuse doesn’t hold up – especially not in court. All trainees know that.

Focussing only on the DNACPR decisions (just one section of the audit), it appears that they were discussed with 35% of the patients. The reasons given for not discussing are all reasonable (unconscious, lack of mental capacity, a request that it not be shared with family), but in a worrying 16% no reason was given (961 cases). Were these documentary omissions, or medical teams making unilateral decisions and not being bothered to get the views of their patients? Well, I know what I think, but I suppose we cannot blame for Telegraph and other commentators for at least highlighting the finding. One way of making this more eye-catching is to extrapolate to 40,000 across the nation and visualise whole cohorts of frail patients being ‘written off’ with little thought.

So, if doctors couldn’t discuss it with patients, did they contact the families? The question asked was; ‘Is there documented evidence that the cardiopulmonary resuscitation (CPR) decision by a senior doctor was discussed with the nominated person(s) important to the patient during the last episode of care?’


  • YES 78%
  • NO 18%
  • ‘NO BUT’ 4%

If ‘NO BUT’, it was recorded that ‘There was no nominated person important to the patient’ in 47% and ‘Attempts were made to contact the nominated person important to the patient but were unsuccessful’ in 53%

This still means that in 18% of cases DNACPR was not discussed with relatives and no decent reason was given. I am a bit confused about whether these 18% include any of the patients with whom DNACPR was discussed directly. If so, there is less of a problem, as the primary responsibility of the medical team is to communicate with the patient if that is possible. The kind and thoughtful team will of course discuss it with the family (or at least let them know), but if the doctor-patient discussion has been documented there is less of a ‘legal imperative’ to document wider discussions. It is good practise, these discussions are important, but they may not bring a doctor to sit down with the notes and scribe a separate report.


Reading the audit, which covers many other areas, I realised that much of my annoyance at the media coverage was because it had honed in on DNACPR as the most important, almost sacred, aspect of EOL care. It isn’t. DNACPR documentation is there to stop a patient being treated inappropriately after natural death. It imposes nothing. It is absolutely necessary if expected death is not to be undignified by unfamiliar hands working to a universal protocol. Yet, for all the other measures of quality that this large audit investigated, it was the only one to hit the front page. This appears to be driven by a continuing lack of trust in some quarters that doctors on the wards are making decisions for the right reasons.

The word in the Telegraph headline that got me was ‘secret’. This is loaded with maleficence and illustrates the depth of misunderstanding. DNACPR is a decision taken when death is expected or it is clear that the heart could not be restarted if it were to stop suddenly, but it is not a decision that materially influences the length of life. It does not in itself influence survival, because it concerns a posthumous act.

This is why I find it difficult and artificial to finish an otherwise transparent, comprehensive and satisfactory EOL discussion with the phrase, ‘And when she does die, when her heart stops, we would not want to try to resuscitate her. I mean, I will put a form in her notes to make it clear that the crash team should not be called should it happen in the middle of the night, when we aren’t here… a DNR form. You’ve heard of those?’

How many times have I seen confusion on the faces of my patients’ relatives at this point? After twenty minutes of careful scene-setting and descriptions of how the palliative care team might offer further support, I bring up cardio-pulmonary resuscitation. Why? It’s not relevant to the situation. It’s not relevant to the dying patient. But it must be discussed. And I must be clear. If I do not set aside a few minutes to discuss DNACPR specifically, however much I have dwelt on the issue of dying, I will be keeping it ‘secret’, even though the patient’s terminal condition is known to all involved.

Although death may have been explored, DNACPR – a denial of death, a commonly futile struggle against natural disease – requires its own time. As you can tell, I find this difficult. Perhaps those who did not document things clearly in the audited notes found it difficult too. Perhaps they didn’t have the confidence to insert DNACPR into the conversation. Perhaps they regarded DNACPR as the least important thing for their patient. (Post-Tracey, that is somewhat naïve.) Or perhaps they thought they knew best and drifted through the ward in paternalistic secrecy – that would, in Professor Ahmedzai’s words, be ‘unforgivable’, but I don’t believe this harsh judgment applies to many.

Whatever the reasons, the message is clear – bring it up, talk about it, even it feels uncomfortable, and document it.




Observations on the Emergency Care and Treatment Plan

The Emergency Care & Treatment Plan, developed by the Resuscitation Council, is out for public consultation. It is hoped that going through this with patients or their representatives will lead to fuller discussions and earlier decisions regarding levels of care and resuscitation.


Speaking as a clinician, it is a welcome development. It marries two strands of decision making that have too frequently been separated – escalation and resuscitation. For patients at risk of deterioration the headline decision has always been about CPR, because there is a ‘form for that’ (I am not being facetious), it is a binary process (For CPR or Not For CPR) and the harms of inappropriate resuscitation are very visible. Escalation is a more nuanced issue, harder to explain to patients and harder for medical trainees, and sometimes consultants, to get their heads round. It is often neglected until the patient has begun to deteriorate, at which point a flurry of activity is triggered. Families are called in for rushed discussions, intensive care teams summoned to give their opinion about the appropriateness of organ support, consultants in charge are phoned in clinic to make a final decision… and the patient is often too ill to be involved at all. To have these eventualities anticipated would be so helpful, but because no one really knows what is going to happen in the future, or what treatments might be needed, making specific plans is a major challenge.

The ‘easy’ scenario contains the alert patient with acute illness that is not life-threatening in the very short term. There is time to explore their wishes, anticipate possible deterioration and judge potential interventions against their likely benefits and burdens. The more vexing situation involves the acutely ill, frail and elderly patient with temporary or permanent cognitive impairment. They may or may not be accompanied by a close relative or other representative. The atmosphere may be hectic and distressed. Often, despite the patient’s extreme age or clear frailty, the possibility of dying will not have been considered or discussed at home. How to approach the proposed ECTP form?

The form has three boxes which signify the patient’s preferred approach to management. Based on a combination of the patient’s medical condition, prognosis and spoken or reported wishes/goals, it is necessary to choose one of them.


There is a great deal of overlap. Even if the ‘priority is to get better’ (Box 1), a parallel priority of equal importance is ‘comfort’. I would want both, personally. It is interesting how these boxes reveal the fact, not necessarily understood by patients, that medical interventions can come at a price – discomfort or distress. Prolonged dependence on say, a ventilator, is of course appropriate if you are a 35-year old with severe pneumonia, but not if you are 94 with advanced fibrotic lung disease. So who will go for box 1? The young, the middle aged, the previously well… the minority of our admissions. In fact many in this category would not require a ECTP, because it is so obvious that all available interventions should be considered.

And box 3, at the other end of the spectrum? This will be for patients with clear life-limiting conditions, some of whom will have anticipated dying (eg. metastatic cancer not responding to therapy, or advanced cardio-respiratory disease), and some of whom will voice their desire to be kept comfortable and not be interfered with. For the doctor and patient to choose box 3 will require a degree of surety, for it leads to a palliative approach. It signals to other medical teams that medical care should not be escalated. Such surety is quite rare, and box 3, like box 1, will probably account for a minority of patients.

So Box 2 is for the majority. It emphasises both efficacy and comfort. By initialling Box 2 the doctor and the patient will need to think about what treatments to include and exclude. How do you work out what treatments would and would not be wanted? There are many treatments, and for patients they are hard to visualise.

The major, relevant categories that come to my mind are: mechanical ventilation, dialysis/haemofiltration, central line insertion, non-invasive (mask) ventilation, feeding tube insertion, intravenous fluids, intravenous antibiotics… there are many more. It is the doctor’s job, in completing this form, to decide what is relevant to the situation, what should and should not be explored, and to advise on what should and should not be done. All this is in a humane way that does not force the patient to visualise themselves in various situations, or reflecting overmuch on their possible death (which is just not kind after a while).

Doctors develop and use acronyms and stock phrases on the forms that they use. It is not lazy, more a tendency to encapsulate complex concepts in an easy to replicate manner. I think it is unlikely that doctors will list specific treatments exhaustively under box 2. Much more likely they will use catch-all terms like ‘not for escalation to ICU’ or ‘not for artificial hydration and nutrition (ANH)’. Specific positives, like ‘for trial of mask ventilation’ or ‘consider trial of circulatory support’ are a possibility.

Such written indications, if understood and agreed to by patients or families, will be very helpful to on-call medical teams and are the great potential benefit of the ECTP. But to achieve this aim requires considerable skill and experience on the part of doctors. These conversations, which I agree are to be welcomed and necessary, will be long, delicate, and complex. Doctors will need to help to develop effective but sensitive techniques to facilitate and lead the discussions. It will take time, serious time. But if it can be done, I think it will bring about the engagement and shared decision making that has often been missed due to the unanticipated and uncontrolled deterioration that will always occur in hospitals.


A public survey on the ECTP is open until 29th February

I recommend Dr Laura-Jane Smith’s constructive blog post on this subject; if any of my comments overlap with hers I apologise!


3AM, eternal

3AM picutre

A NHS Trust was found to have transgressed a patient’s human rights this week. A young man with severe learning disabilities, Carl Winspear, was made ‘Not For Resuscitation’ at 3 o’clock in the morning without a discussion taking place with his mother. He did not have mental capacity to be involved in the decision, and it was subsequently rescinded before his unavoidable death from pneumonia. I do not know if Carl did actually receive CPR when he died, probably not – perhaps a further DNACPR was made after appropriate discussion in the morning. It appears that the initial decision was ‘medically’ right but ‘ethically’ wrong.

The fact that the decision was made at 3 o’clock in the morning suggests to me that the patient was deteriorating. If so the decision was urgent, and the doctor would have been acting in the patient’s best interests to protect him from a futile procedure. To ignore or overlook the patient’s resuscitation status would have been a dereliction of duty. Yet, at the same time, the doctor denied him a human right. If the doctor had called the patient’s mother and discussed it no such transgression would have occurred. The question we must ask ourselves as doctors now is – 1] would we have had that conversation, and, 2] how would we have conducted that conversation?

The first instinct might be that such a conversation should not take place at 3 o’clock in the morning. We have to get over this! The nature of the decision, and the fact that we are contemplating another person’s imminent death, surely blows away any reservations we might have about disturbing people or inconveniencing people. Perhaps they won’t be able to take it in, having been woken at such a time? Well I’ve had a few such conversations in the early hours, and they can.

The next question is how do we start the discussion? Here we can get into difficulties. Is it an open question, “What do you think we should do?”, or is it a one-way communication, “I’m sorry to say your son/father/husband is deteriorating… we think that we should record in the notes that he should not have resuscitation, he is so weak now it would definitely not work.” Or a mixture of the two. Making it sound right, making it sound humane, but ensuring that the information is shared and a genuine exchange of opinions takes place, is a great challenge.

It takes experience, it takes confidence, and it takes a degree of strength. If the conversation begins with a completely open question then the person on the other end of the line, if they are not prepared for it, will respond to their own perfectly understandable instincts – they will want their relative to live for longer. So they may say, “Yes of course, do anything, if his heart stops… resuscitate.” If this happens you have a long way to go to bring them back to the consensus that you hoped for in the first place. Because that is why you rang, isn’t it – to get your medical DNACPR decision ratified by the patient’s next of kin? This is the error – the fait accompli. However sure we are about the medical ‘rightness’, recent judgments tell us that we have to remain open to having that opinion modified. Often, the relative will have anticipated the conversation, although perhaps they would have preferred to have had it in the light of day, outside an emergency situation. But we all know that such conversations do not take place soon enough.

Is this conversation just a politeness? ‘…back to the consensus that you hoped for…’ I wrote in the paragraph above. If we know the answer we want before we pick up the phone (that the patient should be DNACPR), why pretend to ask a question? Are we really interested in the opinion of the relative, when we know that from a medical point of view resuscitation is entirely inappropriate?

The reason we ask their opinion is because the Mental Capacity Act requires us to, for we cannot make a complete decision without knowing as much as possible about the wider aspects of the life in our hands.

GMC guidance, which quite neatly summarises the Mental Capacity Act, says:

‘If a patient lacks capacity to make a decision about future CPR, you should consult any legal proxy who has authority to make the decision for the patient (i.e. someone with legal power of attorney for medical treatment – my note). If there is no legal proxy with relevant authority, you must discuss the issue with those close to the patient…’


‘If they do not have legal authority to make the decision, you should be clear that their role is to advise you and the healthcare team about the patient. You must not give them the impression that it is their responsibility to decide whether CPR will be of overall benefit to the patient.’


‘The doctor [ ] and the patient’s carer, make[s] an assessment of the patient’s condition taking into account the patient’s medical history [ ] and carer’s knowledge and experience of the condition.

The doctor uses specialist knowledge, experience and clinical judgement, together with any evidence about the patient’s views (including advance statements, decisions or directives), to identify which investigations or treatments are clinically appropriate and are likely to result in overall benefit for the patient.’

The opportunity to modify that ‘obvious’, sure-fire medical decision must be respected – that’s the MCA, the law. I suspect that such modifications are rare, but trying to have the conversation signals an awareness that there is more to the final phase of a patient’s life than the physical ability of their heart and lungs to sustain a cardiac arrest and subsequent resuscitation attempt. There is a social and emotional context that only the task-oriented, over-scientific doctor would regard as irrelevant.

Unfortunately ‘task-oriented, over-scientific’ describes rather well how many doctors feel at 3AM. The backlog of work and the burden of prioritisation may lead you to overlook the subtleties. A rapid decision is required, the ‘right’ answer is clear, the form needs to be filled out because without it the ward staff will make the call if his heart stops… the pressure of circumstances is substantial. Yet in just such circumstances are human rights over-trodden. So perhaps the conversation is less about allowing your medical opinion about DNACPR to be modified, and more to ensure that you are not blundering into a complex, emotionally charged, or wholly surprising situation for the relatives.

Yet, I can imagine a situation where a completed but un-discussed DNACPR decision might be appropriate. If the patient is deteriorating rapidly, dying before your eyes, it must be permissible to make that decision and sign the form even if you have not had the time, or been physically able, to have the conversation. A genuinely futile CPR attempt performed for want of a conversation seems like an unbalanced state of affairs to me.

It is in these situations that I find myself making the DNACPR decision, but writing very carefully in the notes the reasons why. It might be half a page long. It will include my opinion that the patient is deteriorating and likely to die in the next few hours, possible less, and that my knowledge of the patient’s comorbidities or frailty lead me to feel absolutely confident that resuscitation would bring only harm, and no benefit. Then I will write that I have been unable to contact the next of kin, or for other reasons have been unable even to make an attempt at that time. I leave the situation hoping that my justification proves robust should a complaint arise after the death of the patient. Making good notes in parallel with Do Not Resuscitate forms (which are a mere administrative sign) is a habit that we must develop. In the Janet Tracy case it was remarked by the judge that there was no collateral evidence to support the doctor’s assertion that communication with the patient had taken place. By sitting down at a desk and formulating our thoughts, even if the 3AM mental fog slows us down, we provide a narrative that tells, days or weeks or months later, other interested parties such as the relatives, a coroner or a judge brackets (should it go that far), what we were thinking and why we thought we were right. DNACPR forms on their own are cryptic and appear bureaucratic, the very tendencies we must avoid when dealing with people at the end of life.

Why did that man receive CPR? – part 3

I rang the family of the 96 year old man, Mr Simpson. I knew I was crossing a boundary, but I had gone as far as I could on the other side of the line – in the hospital, in the GP surgery. I needed to know how much of an offense that futile 6 minute exercise in attempted resuscitation was. Mr Simpson had a younger wife, aged 85, and several children, only one of whom was in the area. He, Dennis, was 65. I held my breath and called. A male voice answered – Dennis.


“Hello. My name is Dr _____, I am one of the doctors who helped to look after Mr Simpson…”


“I wondered if I could meet with you, and his wife. There is something about his care in the hospital that I want to discuss with you, as long as it’s not too distressing…”

“Well, we weren’t surprised that he died. He seemed very peaceful when we saw him. My mother is very sanguine about it, upset of course, but I can’t see why she wouldn’t be happy to talk…”

We made an arrangement.

A week later I sat in their lounge; Mrs Simpson, Dennis, and me.


Dennis: “How can we help Dr _____?”

Me: “I’ll get to the point. I don’t know if you know what happens when patients die in hospital.”

Dennis: “They go the mortuary don’t they. They are covered up and taken out of the ward…”

Me: “But before that. Have you heard about resuscitation?”

Dennis: “Yes. We’ve seen it on TV. When they try to restart the heart. Very dramatic.”

Me: “It is. Sometimes it works, and the patient comes back to life, but often it does not, especially if the patient is very frail. We tend to assume all patients should have resuscitation if their hearts stop. In fact, unless someone has specifically said it shouldn’t happen, if they die the crash team will be called as an emergency and they will start to perform resuscitation on the patient.”

Dennis: “All patients?”

Me: “Unless a ‘Not for resuscitation’ decision is made, yes.”

Mrs Simpson: “Did they do that to Arthur?”

Me: “Yes, they did. That’s why I’m here. I wasn’t very happy about it when I discovered it.”

Pause. Dennis and Mrs Simpson look at each other.

Me: “How do you feel about that, now you know?”

Mrs Simpson: “It feels very – wasteful. To think  of all those doctors running in, the machines, all the shouting and panic, and Arthur lying there. Did it hurt him?”

Me: “I don’t think so Mrs Simpson. He would have been unconscious. And when they realised that his heart was not going to restart again they stopped.”

Dennis: “After how long?”

Me: “Five or six minutes.”

Dennis: “That long?”

Mrs Simpson: “Was it wrong? Is that what you’re saying Dr ____? Is that what you are here to tell us?”

Me: “I don’t know. I want to ask you. You see, the intention of the system we have is good – to save as many patients as possible – but we can be slow at identifying patients like your husband who really shouldn’t be subjected to resuscitation. It seems wrong, it seems like a mistake, when someone like that is put through such a treatment, but because the patient has died we never know how wrong it is. Is it wrong at all, if the patient passes away and feels nothing?”

Dennis: “Of course it is. To think of him being pushed around like that. It’s not what he would have wanted at all.”

Me: “Do you know that Dennis? Did he ever say that?”

Dennis: “Not specifically. Whoever talks about resuscitation specifically? But he was plain that he didn’t want to spend lots of time in hospital. He told me he wanted to die at home – ‘like in the books’ – he said, he loved the classics. His idea was a clean sheet, a doctor popping in during the morning and leaving instructions with the family, and one of us reading something to him as he became more and more drowsy…”

Me: “That’s… a really strong image. Wow.”

Mrs Simpson: “He didn’t discuss that with me Dennis.”

Dennis: “Perhaps it’s a male thing Mum… he wasn’t one to talk about himself that much…”

Me (uncomfortable) : “Did he, or you, ever consider leaving instructions? Written instructions?”

Dennis: “No. But we should have, I see that now.”

Me: “The difficulty is, now that you know what happened to him, to work out how wrong it was to try to keep him alive. Mrs Simpson, what do you think?”

Mrs Simpson: “Until you told us, we didn’t know. We assumed he had stopped breathing and that he had just passed away on the ward. I was not surprised, even though he was not that unwell when he went in. At his age it could have happened at any time. It could happen to me at any time! His death I can accept. And now you come and – forgive me – you come and complicate it. I don’t know what to think. I trust the hospital to have given him the right and the best treatment. If you tell me it didn’t, then I am upset. I don’t know enough about it to have a strong opinion – was it right or wrong. If that is what you do in the hospital, as long as he did not suffer I am not angry. Dennis?”

Dennis: “I’m upset. His death, as I now imagine it, is the opposite of what he would have wanted. The exact, diametric opposite. So that makes me angry.”

Me: “Would you rather I hadn’t told you though?”

Dennis: “In one way, yes. We were getting along fine after his death. This has sullied our memories… but if it happened it happened, and it’s better for us to know. The only good that can come of it though is if you go back to the hospital and make sure it doesn’t happen again, to another nearly hundred year old.”

Me: “That is a real problem for us. You see, if a patient looks OK, not to unwell, and if they don’t bring the subject up, doctors don’t always raise the subject. If it is not discussed openly with the patient, or with the family, they are not allowed to make a patient ‘Not For Resuscitation’.

Mrs Simpson: “Absurd. It was obvious he wouldn’t want such a thing.”

Dennis: “But you’ve had complaints I guess. Legal cases. I’ve read about them. But surely if your doctors bring a 96 year old into hospital, they should have to raise the subject. Not to do it is just avoiding the issue. They can’t just pretend it might not happen.”

Me: “I agree with you. But it gets lost, I’m afraid. And we can’t have a rule that says over a certain age you should not have resuscitation. It has to be on a case-by-case, individual basis.”

Mrs Simpson: “Then go back, please Dr _____, and tell them, all your colleagues and students, to think about it. And to talk about it. Please.”

Me: “I will. Thank you.”


Part 1

Part 2



three covers