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Reputations: the light and the dark

‘Light in the darkness’ by Pat Cegan

 

A recent thread on Twitter brought up a subject that is really spoken about. Elin Roddy kicked it off with a comment that patients admitted to nursing homes should routinely be engaged in conversation about their preferences towards end of life. With habitual frankness, she later commented that there is a danger that those working in hospitals who are more willing and able to do this, run the risk of gaining a ‘reputation’. Others confirmed that they had indeed become known in their Trusts as being prepared to discuss resuscitation and sign DNACPR forms.

This is something that has bothered me for a long time, being one of the self-acclaimed “willing”. What if a doctor acquires a reputation as being comfortable with the fact that their patients might die? Might that realism be construed as nihilism? Might they come to be regarded less as a saver of life, but rather an usher into the next? Uncomfortable!

Doctors lie on a spectrum. Some cannot bring themselves to consider the possibility of death, and continue to propose active treatment even when the patient does not seem to be responding. Others readily identify signs and symptoms indicating that life expectancy is limited, and are prompted to initiate a (sometimes) difficult discussion about end of life care. Some move across different points on the spectrum, but it is quite possible that they feel at home near one end or other.

If a doctor actively seeks the signs of imminent dying in the belief that they will save patients the burden of futile treatment, there is a theoretical danger that they will fail to recognise opportunities for saving them. A doctor on the other end of the spectrum may identify ‘survivors’, and during their career may be credited with helping to save patients that others would have ‘given up’ on. However, in doing so they will probably push more patients through periods of aggressive and ultimately futile treatment. How many ‘failures’ it takes to justify one ‘success’? This sounds like an overly cold and impersonal way of looking at things, but it is a justifiable metric. In my recent paper on DNACPR decisions, I cited a study by Paniagua et al, who found that ‘29 octogenarian patients with cardiac arrest have to be treated with CPR to net one long-term survivor’. That ratio doesn’t look good.

As a patient, do you want your doctor to be the one who looks for any chance to cure, or who accepts that death is sometimes inevitable and changes their approach swiftly if things are not going well?

Of course, it all depends on clinical context, and on your wishes. However, in the 8th and 9th decades, when physical frailty is significant, comorbidities sometimes numerous, and mental capacity variable, the assessment very much depends on the doctor’s perception. Their instinctive position on the aforementioned spectrum may make a big difference.

They may be influenced by the type of patients they tend to see; their case-mix. A palliative care doctor will spend his or her days looking out for signs of terminal deterioration, and (almost by definition) will not be looking for opportunities to commence heroic new treatments. The elderly care physician will try to balance the burden of curative or preventative treatment against the realistic benefits. In my specialty, hepatology, I see patients in their third and fourth decade who look as though they are going to die in the next week or two (usually from multiple organ failure as a complication of cirrhosis). But, being young, they might pull through if we keep supporting them in the ICU. The reward, survival, seems to justify any cost – long weeks in ICU, months convalescing. But the price (not mine, the patient’s) to pay for failing to recognize that organ support is not working, and carrying on with fingers crossed just in case there’s a ‘turnaround’, is a prolonged death attached to multiple life-support machines.

Negotiating optimism and pessimism in these situations is difficult, and as I described in a recent case report, fluctuations in clinical condition that result in changes of tack on the part of the medical team can result in what looks, in retrospect, like vacillation. This goes to show that few of us are comfortable in diagnosing dying, and, especially in younger patients, will always choose life-prolonging/saving treatment if there is a chance, however small, that it will work.

There are other, perhaps less noble, drivers to continuing with aggressive treatment in the face of apparent futility. Perhaps a patient’s management is being led by another consultant or team, and it does not feel right or comfortable challenging their decision. Perhaps the underlying disease is well outside my expertise, and I do not feel confident commenting on the likely disease trajectory. Perhaps the team treating a patient are known to be therapeutically aggressive, and are bound to take suggestions that they should rationalize treatment badly. Perhaps I have seen too many patients die recently, and just want a good news story…

In my view, as a doctor who is generally comfortable and accustomed to recognizing futility, we must be careful not to lose the ability to see glimmers of hope, even if those glimmers are not apparent until the murky surface presented by illness is scratched away by a period of active, optimistic treatment. As long as we are able to admit defeat when things are going wrong, and brave enough to explain that to our patients or their families, it seems reasonable to sit on the optimistic end of the spectrum most of the time.

In this way we might witness recovery against the odds, feel good about, and use those cases to motivate and enthuse our teams. At the same time, there is no harm in being known as a realist who can identify the signs futility when they begin to accumulate, and who is willing to change direction even if that means pushing against the prevailing wind.

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An illustrated history of truth in medicine

Who isn’t completely honest with patients?

Memorial Medical Centre after Hurricane Katrina, New Oleans

Some years after Hurricane Katrina (2005), I read an excellent book, Five Days at Memorial by Sheri Fink, about the alleged actions of medical staff who looked after patients in the flood-stricken Memorial Medical Centre. They were accused of administering sedatives and opiates with the intention of hastening death, i.e. committing euthanasia. Immobile, comorbid and very dependent patients in the Lifecare facility stood no chance of being evacuated via the helipad, and as conditions deteriorated in the heat, they began to suffer. The details and follow up to this investigation can be read here.

 

Emmett Everett, died in MMC and found to have non-prescribed sedatives on board at post-mortem

This was about more than words, obviously, but the scenario of doctors administering drugs without their patient’s knowledge, ‘for their own good’, led me to investigate the history of truth in medicine. I spoke on the subject to a meeting of the West Kent Medico-Chirurgical Society, and this essay is based on that talk.

 

Route to the helipad, MMC

 

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We start with an ancient story: Arria, a Roman woman, regularly visited her husband, Caecina Paetus, who had been imprisoned by the emperor Claudius. During this period, their sick son died and was buried, but Arria chose to hide this information from her husband – to spare him the pain. Pliny wrote that when she felt the sadness begin to overcome her in his presence, she took herself away so as not to reveal the truth.

 

Arria and Paetus. Later, he was ordered to kill himself by Claudius, but could not do it. So Arria took the knife, stabbed herself, cried ‘Paetus, it does not hurt’, and died. He then carried out Claudius’ sentence on himself.

 

An early example of deception for the (perceived) good of another. And a behaviour that may be relevant to doctors and nurses who sometimes know a great deal more about the details of their patients’ condition, and their likely fate, than their patients do.

 

Antiquity to industrial revolution

Hippocrates

The fathers of medicine saw a place for withholding truth. In the ‘Decorum’, dubiously attributed to Hippocrates [460-370BC], it is written,

Perform your medical duties calmly and adroitly, concealing most things from the patient while you are attending him.

 

Galen

 

Galen [130-210AD] described ‘δειλός’, the state of fear and anxiety about ones health that should be avoided as much as possible.

Arnald de Villanova [1240-1311], a Spanish physician, stated,

Arnald de Villanova

Promise health to the patient who is hanging on your lips,

but once you have left him say some words to the members

of the household to the effect that he is very ill;

then if he recovers you will be praised more…

 

Page from ‘Chirurgia’

And the famous surgeon Henri de Mondeville [1260-1320] wrote, in his treatise ‘Chirurgia’,

He should promise a cure to all his patients, but not conceal the danger of the case, if there is any, from the family and friends…

 

 

500 years later however, the words of Samuel Johnson [1709-1784] were reported by Boswell,

Clearly he supported full disclosure, mainly due to personal experience.

 

Thomas Percival

Manchester cotton factory

In the early 19th century Dr Thomas Percival was asked to help settle a dispute between apothecaries, physicians and surgeons at the Manchester Royal Infirmary. Percival had done great work in analysing bills of mortality and improving working conditions in the cotton mills.

In 1803 he published ‘Medical Ethics, or a code of institutes and precepts adapted to the professional conduct of physicians and surgeons’. Appearing to err on the side of protective optimism rather than painful honesty, he wrote,

‘A physician should not be forward to make gloomy prognostications, because they savor of empiricism… the physician should be the minister of hope… It is, therefore, a sacred duty to guard himself carefully in this respectm and to avoid all things which have a tendency to discourage the patients and depress his spirits.’

 

Manchester Royal Infirmary, opened 1755

 

A little later, 1849, the American physician Worthington Hooker [1806-1867] wrote ‘Physician and Patient, or, a practical view of mutual duties, relations and interests of the medical profession and the community’. In Chapter XVII, titled ‘Truth in our intercourse with the sick’, he writes,

 

Worthington Hooker

 First, It is erroneously assumed by those who advocate deception, that the knowledge to be concealed…would be injurious

Secondly, it is erroneously assumed that concealment can always… be effectively carried out.

Percival’s Medical Ethics

Thirdly, if the deception be discovered or suspected, the effect upon the patient is much worse…

Fourthly, the destruction of confidence… [has] injurious consequences to the persons deceived

Even though Hook was beginning to challenge the tendency to conceal, individuals assumed that deception was an intrinsic medical skill well into the 20th century, as this 1927 quote  from Collins demonstrates,

‘the longer I practice medicine, the more I am convinced that every physician should cultivate lying as a fine art’

 

 

Nuremberg and autonomy

By the mid-20th Century, everything had changed. Under the Nazi’s, medicine was consumed by evil. Dr Karl Brandt [1904-1948], Hitler’s “Escort Physician” and latterly Commissioner of Sanitation and Health, oversaw a systematic euthanasia programme, and  widespread medical experimentation. Looking at his fresh face at a gathering of the elite in Berchestgaden, it is still difficult to understand how doctors such as he, trained to heal, could have drifted so far into the moral swamp. He was tried at Nuremberg and hung at the age 44 (having previously been sentenced to death by the Nazis for helping his family escape from Berlin to surrender before the city was overrun).

Nuremberg

 

Karl Brandt, on trial and in his pomp

 

From Nuremberg emerged principles, the Nuremberg Code, that guide us today. These include, as regards medical interventions,

  • The voluntary consent of the human subject is absolutely essential…
  • …exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion…
  • should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him/her to make an understanding and enlightened decision.

 

The last one is key. For consent to be valid, the person, or patient, must know everything. Consent, in this context, is a corollary of autonomy, probably the stoutest pillar in the ethical framework that doctors refer to on a day to day basis. Tom Beauchamp and James Childress, working in Healy Hall, Georgetown University, Washington, wrote Principles Of Biomedical Ethics, containing the now familiar touchstones:

Autonomy – The right for an individual to make his or her own choice.

Beneficence – The principle of acting with the best interest of the other in mind.

Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.

Justice – A concept that emphasizes fairness and equality among individuals.

 

 

Two judgments

Respect for autonomy requires full disclosure of the relevant facts, so that patients can make an informed decision. This seems simple. Yet, even today, we sometimes struggle with it.

The case of Janet Tracey, about which I have written on this blog before, is an example. A doctor issued a DNACPR notice without, in the opinion of the judge, offering in a meaningful way to discuss it with her.

He said,

“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.”

 

The Tracey family outside the High Court

 

The argument, that in this case it would have been cruel to press her to discuss the subject, did not wash. In fact the judge doubted that the doctor had tried as hard as he said.

‘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.’

And in his summary, the judge said,

‘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.’

‘…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.’

So, the opinions of those wise men who favoured concealment of harsh truths have been challenged, and overcome. Now, especially towards the end of life or the context of surgical procedures, it is clear that full disclosure is required. To do otherwise is rarely justified.

 

Sam and Nadine Montgomery

 

The Montgomery case has further nuanced our approach to providing information. Nadine Montgomery agreed to a vaginal delivery, even though her baby was large compared to the mother (who was diabetic, a risk factor for having larger babies). The baby became stuck in the birth canal and suffered a brain injury. The Supreme Court found that the risks of vaginal delivery in this particular case had not been explained adequately, and that if they had Ms Montgomery would definitely have opted for a Caesarean section.

The judgment, which is fascinating to read, includes a critical reference to the Bolam case, which was one of  the precedents on which consent use to rely. Under Bolam, doctors had to say as much as a group of peers in similar circumstances would generally have said (this always seemed quite a circular argument to me).

Furthermore, because the extent to which a doctor may be inclined to discuss risks with a patient is not determined by medical learning or experience, the application of the Bolam test to this question is liable to result in the sanctioning of differences in practice which are attributable not to divergent schools of thought in medical science, but merely to divergent attitudes among doctors as to the degree of respect owed to their patients.

The judge then emphasises the need to tailor the information they give to the individual,

This role will only be performed effectively if the information provided is comprehensible. The doctor’s duty is not therefore fulfilled by bombarding the patient with technical information which she cannot reasonably be expected to grasp, let alone by routinely demanding her signature on a consent form.

Many say that good doctors have been discussing risks with their patients like this for years anyway, and now the ‘law has caught up’. But we can see how a tendency to paternalism, to partial transparency, has grown from the historical instinct to withold information. There may still be exceptions. In emergency scenarios, where the patient is vulnerable, or cannot focus on the facts, and decisions must be taken, doctors are quick to fall back on ‘best interest’ thinking. This requires an objective assessment of what is best, and a rapid discussion within the team (often led by the clinician, who will tend to drive the direction of travel). As the figure below illustrates, with increasing urgency the amount of information, and therefore the degree of autonomy permitted, may reduce.

 

 

These situations place a great power, and burden, in the hands of decision makers. It is essential that outside these ‘lifesaving’ situations, clinicians revert back to the habit of sharing information, and ensuring consent is truly informed. As we know from the good Dr Hooker’s third observation on the matter of truth – ‘if the deception be discovered or suspected, the effect upon the patient is much worse…’. Nowadays, that effect will result in more than suffering for the patient, but a professional or legal challenge to the doctor in question.

 

 

***

 

Picture credits:

Route to the helipad – diagram of hospital taken from ‘5 days at memorial’

Tracey family, copyright Roland Hoskins

Emmett Everett – from CNN interactive website

Others – commons license

 

Further reading:

I became interested in this subject, having found myself ‘spinning’ prognostic estimates in the intensive care unit, whether consciously or unconsciously, while speaking to relatives about the best way forward. In a paper, ‘Sophistry and circumstance at the end of life’ (Pubmed abstract), I explored language choices made during these discussions. For instance, a 95% chance of dying sounds bad, and seems to meet the standard for futility; but choose to present that as ‘a 1 in 20 chance of survival’, and it doesn’t sound so hopeless. Doctors may use language differently according to their therapeutic agenda.

In a second paper, ‘The witholding of truth when counselling relatives of the critically ill: a rational defence’ (PDF), I reviewed some literature on the subject of truth-telling, and explored how being less than frank about poor prognosis can sometimes be justified.

The literature regarding truth in medicine is extensive, and this paper by Catriona Cox and Zoe Fritz is a good introduction with many helpful references.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In my day

Reading about the situation at Derriford hospital, where two doctors found themselves responsible for over 400 people, I thought about my own training in the 1990s. Before you slap the computer shut or throw down the phone, I should say that although there is a fair amount of ‘in my day’ reflection here, it is not my intention to promote a ‘just get on with it’ attitude.

Back in the 90’s few if any junior doctors thought about challenging potentially dangerous staffing levels. If we turned up to the hospital on a Saturday morning to find that we were one doctor down, we steeled ourselves for a nightmare and hit the wards determined to fight the fires as they arose. If people died, we attributed their demise to disease, not to a paucity of doctors. Overnight, in the large hospital where I started work, two JHO’s and one SHO* managed all the medical wards and all medical admissions after seven o’clock. The Registrar went home at ten. The consultant was not seen until the 8AM post-take round. That was just how things were. It seemed hard, it felt threadbare, but we did not complain.

Our perspective was centred on our own experience, not that of the patients. As the sun rose to brighten the night-blackened windows after a non-stop night, and the nurses handed over to the early shift, we congratulated ourselves for having responded to the many calls, requests and emergencies that had arisen. The euphoria of finishing the shift counteracted any misgivings we may have had about sailing too close to the wind at times. We felt like heroes. In the pub, we spoke about working in ‘warzones’.  We weren’t happy with it, and the hours before a series of weekend on-call shifts could become heavy with foreboding, but we managed.

If a patient deteriorates during a period of sub-optimal staffing, it is very hard to link their outcome with the number of doctors available. The sick get sick, that is why they are in hospital. Doctors are good at focusing their time and energy on those who need it most, so of those 400 and more patients in Derriford, perhaps twenty will have required urgent medical assessment and a new management decision over an eight or twelve-hour period. The stable majority were looked after by nurses, who could alert the doctors to any signs of deterioration if they developed. It is rare for two or three patients to get acutely ill simultaneously, such that a doctor cannot physically be with a patient during an emergency.

But what if that does happen? A doctor might have to run away from one patient before he or she has sorted them out, to see another one who was just deteriorated. If there are only two doctors, and six simultaneously sick patients, it would appear that a difficult choice has to be made, and the least deserving will go neglected. This is extremely rare. When the alarm goes up, other colleagues (anaesthetists, outreach teams, even orthopods) emerge from the ether. The system stretches. The need is met. So at the end of the day, nobody seems to suffer. There are no ‘serious incidents in which the root cause is felt to be under-staffing. And the patients… they would have had no idea the team was a doctor or two down. So what exactly is the problem?

Well, there was risk. There was probably delay in seeing patient, and perhaps some associated morbidity – but none that could not be measured or proven. And the doctors, for all their coping ability, were strung out, and felt vulnerable. The price to pay for a system running at full stretch is the potential for disaster, stress, a poor learning environment, disillusionment and ultimately burnout. Yet many of us saw this during our training, and said nothing. We were in the problem so deeply, we didn’t see it as a problem. Or perhaps we didn’t have the ability a look up and gain a broader perspective.

Today junior doctors are more vociferous, and, in certain circumstances, more militant. The industrial action that took place last year was the clear example of this. Unsatisfactory staffing levels and training opportunities are now challenged. They do not regard those difficult shifts as a heroic challenge, but as failures of the system which they, the doctors, have a responsibility to highlight. This involves informing management and pressing for locum cover, providing feedback freely and without fear through GMC surveys and empowering their BMA representatives.

Why the change? I think junior doctors are more mature nowadays. Many have competed degrees before entering medicine, or have pursued different careers. They may be more independently minded. As a 24-year old in my first teaching hospital, I was grateful to have been selected for a ‘good’ post. I saw the challenges ahead in terms of my ability to meet them, to avoid failure however steep the learning curve… not to question the organisation itself, or the wider political environment. Therefore, during those years when I worked to the limits of my ability in understaffed areas, I did not complain. I did not seek to improve patient safety by making a fuss. I was, in a way, complicit.

Old attitudes don’t fall away easily. When I hear about an understaffed shift now I worry, and I sympathise, but a hard part of me thinks, ‘They’ll manage. They always manage…You know, back in the 90’s…” etc., etc,, yawn, yawn.

The future requires doctors like me, who appear to have grown older and perhaps a little cantankerous, to recognize that what was once acceptable is no more, and that without fuss, there is no change.

*JHO, junior house officer – first year post-qualificiation; SHO – senior house officer – 2nd or 3rd year post qualification

 

Think like me

Last week I delivered a lecture about resuscitation decisions. Part of it was a scenario, carefully thought out with my co-presenting colleague. We described a lady in the 80s, living in a residential home, with a degree of heart failure and some other co-morbidities, who had been admitted with pneumonia. There were markers of severity indicating a 20% risk of death. In this scenario she deteriorated overnight, and was found ‘barely conscious’ and in respiratory failure.

We asked the audience to put up their hands if they thought the patient should have a ‘do not attempt resuscitation’ (DNACPR) notice. I was amazed to see only around 15% of the audience put their hand up. Then we asked if they would consider a ceiling of care, for instance non-invasive ventilation or, all the way to intensive care and mechanical ventilation. Most felt that non-invasive ventilation on HDU would be the appropriate limit of intervention. But I couldn’t get over the small number who would have started to discuss resuscitation status at this stage. Why didn’t they think like me?

This scenario was deliberately “grey”. We didn’t want to make it obvious that the patient was dying, for instance with terminal cancer or end-stage heart failure. But we wanted to describe a patient who was not improving. In my mind, having considered the case carefully before the lecture, the fact that she was to deteriorating despite antibiotics meant that if her heart did suddenly stop, the chance of surviving would be very small indeed. Advanced life support might temporarily restart the heart, but would not reverse the problem, which was pneumonia. It seems clear to me. Why not to my colleagues?

Could it be that I was wrong?

Probably not, in terms of the evidence base around prognosis and resuscitation. My colleague and I had reviewed the studies. We could show that a successful outcome was unlikely. So I came away asking myself, why the discrepancy?

I had had the benefit of thinking about this case in detail, for a few days. Those who had just heard the scenario were like doctors in the acute medical units, who are presented with a new patient’s details and required to make big decisions a few minutes later. It doesn’t feel comfortable, or right. Perhaps that was the issue. How can you make what seems like a ‘life limiting’ when you’ve only spent 10 minutes with the patient?

Or perhaps they judged that the hypothetical patient had more of a chance than I did. Perhaps, if the heart was restarted (assuming too that they would then be admitted to ITU for ongoing ventilatory support), continued antibiotics would overcome the infection and she would recover. That seemed like wishful thinking… but who would criticise a doctor for grasping at that possibility, however small?

Or perhaps, I reflected, I have developed too gloomy outlook. I am too ‘realistic’. So interested have I become in identifying futility and ensuring that patients do not undergo CPR needlessly, I am unable to recognise therapeutic opportunities anymore. How else could my opinion different from the majority so starkly?

But I know that this is not the case. I am careful always to make sure that I have not overlooked an opportunity for improvement, or cure. So is the problem me or them?

The answer can only be – neither. They are good doctors; I think I’m a good doctor. We disagree. And in this disagreement is revealed the essence of uncertainty, the unknown quantity that doctors deal with every day. If a room of individuals interested enough in resuscitation to attend a lecture cannot agree on the right course of action, how can we expect patients or their family to offer a firm opinion, or agree with our suggestions?

This point was brought up by someone in the audience. He said that we should not be surprised when families disagree with our assessments, if a group of ‘experts’ cannot be certain of what the outcome is likely to be. And faced with disagreement, we must not allow ourselves to see them as opponents in a debate whom we must win over. However sure we are of our opinion (having had the benefit of dwelling over the results of investigations, the output of prognostic models, or just plain experience), to walk into a room and bring around an anxious family to that point of view is probably naïve. The situation is being revealed to them with the same suddenness that it was revealed to the colleagues on that lecture theatre. The natural instinct is to defer judgement; to assume that there is a chance of survival that should be pursued with active treatment. Only in the most clear-cut cases, where death is visibly progressing or an underlying disease has clearly reached its culmination, can we be fully didactic.

So at the end of it all, I remain confident that I can identify patients for whom CPR would be futile, but at the same time I realise, if I had not before, that opinions will frequently differ. For both doctors and families, time is needed for the facts to be explained, for their implications to sink in, and for the resulting reaction to mature. This cannot always be done in ten minutes, or on Day 1.

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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.

“Yes.”

“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

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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

***

 

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The unknown quantity

What determines if and when patients ‘turn the corner’? I have never understood.

In my world of acute-on-chronic disease, where patients suffer sudden and life threatening reverses, there are numerous stories of unexpected turnarounds. Our efforts to prognosticate accurately have led to many scoring systems, all of which have been ‘validated’, but when applied to individual patients who surprise you with twists and turns, their relevance appears diminished. However bad the numbers, we treat, we support, we try to save… unless the presentation comes at the end of a long and well recognised decline, and we (the patient, the family, the team) are thoroughly ‘signed up’ to palliation. That circumstance remains a rare one, despite the increasing value we give to conversations about death.

So we are guided by experience – that fickle teacher.

Last year a very sick patient came in. He struggled, we struggled; he responded to intensive care support, we felt satisfied that our decision to advocate for aggressive treatment was the right one. He deteriorated, we isolated the infection. We talked the family through it, and suggested that not give up yet. He fluctuated, weakening a little with each reverse, until… weeks later, he died. All that hope. All that work. The ‘numbers’, at one stage, had looked better. But that is the nature of the disease. Unexpected complications. Hidden infections. Sudden ruptures.

The grim picture joined the file of failures that I, and all doctors, compile in their memories from day 1. It is called experience. But the way such memories absorb the light colours our view of the present. That is the whole point of experience, of course; to change the way we approach similar circumstances in the future.

The shapes and lines of that patient’s clinical course remained etched in my mind when, months later, I recognised an almost identical scenario. Her liver function looked the same during the first week. Her slide into an intensive care bed occurred over similar interval. I was ‘guarded’ in my prognosis, but I knew what was going to happen here. I knew. The road home presented too many traps and potholes for her body to negotiate, given the advanced nature of her disease. Any and each of them could kill her in a few hours. As time passed, her clinical course described the usual sinusoidal curve. The downslopes were not catastrophic enough to justify withdrawal, and the upward gradients were not sufficiently sustained to launch a bid for convalescence.

We reacted to each complication with urgency. Our policy was unchanged – treat, support, save. But my heart was not really in it. I did not have hope. I know I communicated that to trainees. Those muttered opinions as we walked out of intensive care. But at no point did we hesitate or withhold. And time passed.

Until… she returned to the ward. She turned the corner. She had climbed far enough up the hill for the swirling, sucking mists of death to no longer have a hold on her. Then she went home.

A trainee asked, “You know _____? I thought you said the chances of her surviving were…” I stopped her there, and turned the case into a occasion to teach on the subject of uncertainty. 

Is it a ‘survival gene’? Poor science. Then what? We do not know. Probably, luck is involved. When such large unknowns are involved, when the rules that underlie our attempted predictions appear unfixed, pattern recognition can lead to erroneous conclusions. Sometimes it’s better just to treat, support, stand back, and try not to outthink the disease… hoping that they turn the corner.

 

See also, Patterns and pride: diary of a medical anecdote

 

 

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So superior… – making judgements on medical care

 

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The Amber Spyglass (or what a retrospectoscope might look like)

 

Patients may see many doctors during the assessment and treatment of a particular illness. In the transition from primary to secondary care, medical opinion becomes more specialised, and the knowledge of the doctor facing the patient deepens in that particular area. Doctors become more confident in their opinion, and in the light of information are able to judge the quality of the decisions taken earlier on. This means that the specialist must, either privately or openly, pass judgement on what has gone before. Usually there is no controversy, because nothing incorrect was done. But sometimes, looking back, it becomes apparent that clues were missed. Things may have been done ‘sub-optimally’… according to the specialist’s very particular expectations.

The decision then has to be made – do you, as the specialist, tell the patient what you are thinking, or not?

The answer to this would seem simple. If by omission or commission the patient has been harmed, there is a responsibility to be open about it. However, harm is difficult to define, and the grey zone between delay and harm is broad. An abnormal blood test performed fifteen months ago might, if interpreted correctly, have led to an earlier diagnosis – but who can measure by what degree the patient’s life has been affected?

For the patient, finding out that two years ago a scan showed some early signs of liver damage, or that an abnormal vitamin level went unnoticed and uncorrected (contributing to months of fatigue), the conclusion is bound to be that things were not done well. The question of blame arises. The patient may ask  – what do you think should have been done? What do you think about the quality of the care I received? Patients, in fact all people who receive a service from a professional, like to benchmark. It is natural.

It isn’t just at the transition between primary and secondary care that judgements on the quality of care may me made. On the wards, once a patient is established under the care of a specialist team, questions may be asked about the time it took to reach a diagnosis, or about the appropriateness of initial treatment. If the wrong diagnosis was reached (say, heart failure rather than chest infection), was the error acceptable? Was it just the way medicine works, with the correct diagnosis emerging over time, as pennies dropped and more experienced people made their assessment – or was it just bad medicine?

The temptation for doctors is to close ranks, and to present the hospital, or the health service as a whole, as a seamless unit where information comes in and decisions are made, by individuals yes, but by professionals who are part of a larger machine. Individuals shouldn’t be criticised; rather, blame the system.

I remember once, as a registrar, the family of a deteriorating patient asking me the name of the doctor they saw in casualty, who they felt did not diagnose the illness quickly enough. In the relatives’ room they pressed me hard, and demanded details. I felt that the presentation was complex, and that the quality of initial assessment had been satisfactory, if not genius. So I refused to give a name. I talked about the ‘team’. In my wisdom I felt that it could not help the situation to offer up an anxious SHO, and that the request reflected the family’s grief and uncertainty. The family needed a focus on which to direct their anger with the situation. Was I right or wrong?

On other occasions, in clinic, I have had to explain as best I can the decisions made by a doctor – often a GP – whom I have never met. I may end up saying things like, “Well, based on the information that was available eighteen months ago, it wasn’t unreasonable to monitor the situation…” Or, “Perhaps another doctor might have referred you six months earlier, if they had a special interest in this disease, but yet another might have waited a year. There is no right answer.” Or, if the patient asks me up-front whether I think their GP is any good, based on what has happened before, “It is not fair for me to pass judgement… I see patients with your problem nearly every day, and I come to this with a very specific expertise. Your GP has to decide when to refer… and it’s perfectly reasonable to monitor things for a while first.” I may say this even I think, privately, that they can’t have been that up to date with modern medical thinking on the topic in question. But who am I to criticise? What do I know about psychiatry or gynaecology?

So what drives this instinct to obfuscate? Is there a justification? Surely, in an era of transparency, the patient should know exactly what I am thinking.

It may be a desire to nip a potential complaint in the bud, even when I think a complaint (formal or informal) might be unjustified? If so, am I right to forestall what a more objective person might regard as a necessary corrective?

It may be loyalty to the larger medical community – an instinctive reflex to shield colleagues from criticism, just like in the relatives room on the ward all those years ago.

Or perhaps it is based on my acceptance that the practise of medicine will always involve variation in knowledge and in quality. Not every biochemical clue will result in the same decision. Each doctor will have developed their own store of knowledge, a unique bank of experiences and memories on which to base their decisions. As long as the decision was not clearly negligent, or so stupid as to warrant immediate correction, we are bound to let borderline or ‘sub-optimal’ decisions go without making a song and dance. We might hint in a letter back to the GP, or in a comment to a trainee’s supervisor, that next time a different decision should be made, and perhaps in that way we reassure ourselves that we have tried to improve the quality of the system as a whole. But patients are excluded from this feedback loop. They may go home entirely ignorant of the fact that things could have been done better, and may not read between the lines of the letter that they are copied into.

In modern medicine patient involvement is key, and transparency is a central pillar. We have a duty of candour which applies to identifiable errors of a certain gravity, and no doctor will overlook a pattern of behaviour that clearly puts patients at risk.  But no such duty exists for reporting back on the grey cases where some educational improvement can be made. Is it reasonable not to inform patients in these circumstances? Would it help them? Or would it just cause confusion, and a loss of faith?

Over time I have become more honest about the non-scientific nature of medicine. Sometimes I begin a discussion with the patient with the papers spread out in front of me, or the blood results on the screen, and talk through what may or may not have been going on in their body over the last few years. If I think a spike in a liver enzyme might have been an early signal, which in retrospect was missed, I will tell them, but without loading it with an opinion. It’s just a fact. The ‘retrospectoscope’ can provide a false image of the circumstances that existed years before. Now you are here, let’s sort it out. There is no point in opining from the security of the specialist’s chair. Misdiagnoses are made there too.

In this way patients can begin to understand that the narrative of illness may follow numerous detours and diversions before the destination – a firm prognosis, a treatment plan – comes into view. Care is not homogenous, and variability, while sometimes permitting the occasional detour, is an inevitable result of human involvement.

 

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Not ready yet

Much is written about the importance of doctors and patients talking about dying. The harms done by not talking about it are many, and have been described in this blog many times. Inappropriate resuscitation attempts, futile spells in ITU that the patient would not have wanted if asked, inaccurate guesses by distant relatives as to what their priorities are… for want of a conversation.

So as doctors we have become more comfortable and ready to have these discussions. We identify clues that the end of life is approaching, and rather than walk on leaving nature to do its worst, we let the patient know. We accept the challenge of breaking the news, even if the clues have been there for other doctors to see for some time. The patient is under our care now – it is our responsibility to make the intervention.

Those of us who feel strongly about the harm done by reflexive escalation or lazy evasions may have a lower threshold for engaging in end of life discussion than others. We may judge our colleagues harshly for dodging the difficult conversations.

But sometimes, we get it wrong.

 

***

 

Dr C looks through the results of recent investigations. The patient, Jean, has been admitted with heart failure, a longstanding diagnosis. Her performance status has deteriorated over the last three months, and she is NYHA grade III (‘Marked limitation in activity, even during less-than-ordinary activity, e.g. walking short distances. Comfortable only at rest’). She has spent four of the last ten weeks in hospital. She is 78.

Dr C, who has never met her before, decides… it is time to talk about dying.

 

 

Dr C: Jean, I’d like to speak with you today, about the future.

Jean: Of course. Take a seat on the bed.

Dr C: Your heart. It’s getting worse. I’m worried about it. It seems to me, it’s getting weaker and weaker. On bad days, it’s barely strong enough to keep you going.

Jean: I manage.

She’s defiant, of her illness, of her situation.

Dr C: Has your doctor spoken to you about what might happen if it gets any weaker?

Jean: No. Should he?

Dr C. Well, it doesn’t matter, we can speak now. I’m worried that if there’s a crisis you may die… of heart failure. I think we need to discuss this.

I’ve said it, the D-word.

Jean:  You’re the first to mention it.

She’s pushing back, she doesn’t want to have this conversation. I feel uncomfortable. But I’m going to carry on. The situation demands it.

Dr C. What family do you have Jean?

Jean: My son. He lives in Newcastle.

Dr C: Is he coming to visit?

Jean: He doesn’t know I’m here yet.

She’s strong, doesn’t come across as vulnerable. I’m not going to suggest we wait for the son to come down…

Dr C. So, Jean. I’ll be frank with you. Many people with a heart as weak as yours do not survive longer than a few months. It’s quite possible that you only have that much time left. I think it’s important that you know this, and…

Jean: How long am I in hospital for then?

This is hard! I feel like I’m forcing it on her. She’s clearly got mental capacity… is she just evading the issue? Do I go on? I must. And I must be clear. I must be blunt.

Dr C: OK. Basically, I think you need to know that you might be dying. And I think your family need to know this, so that you can make any plans, or decisions.

Jean: Like what?

Dr C: Well, for instance, if you were to deteriorate, and we could only give you comfort care… would you rather be at home, or…

Jean: Of course. I hate hospitals.

Not sure I’m doing the right thing here. She’s not getting it. But it’s my job to make her get it.

Dr C: So imagine, you get another chest infection, and the strain causes your heart to pump even less well… we make you as comfortable as possible, but you may not be able to communicate, so we, or your family, need to understand more about your wishes, where you would like to be, what you wouldn’t want… that way we can give you the best care.

Jean: So what do you need from me right now?

It’s not what I need Jean. It’s what you need.

Dr C: Nothing Jean. Just… just for you to think about it. The future. OK?

 

Jean is transferred to the heart failure team. Ten days later Dr C happens to pass her on the ward . Jean glances up, but does not smile. A member of the cardiology team stops Dr C, and, with an embarrassed look, explains that Jean’s son came in and caused quite a fuss. He was angry that a doctor told his mother she was dying, without him being there. He found Jean in a very depressed state. She said that the doctor is question was very matter of fact… ‘It wasn’t kind,’ the son said.

“But she needed to hear it,” replies Dr C, sighing.

“Well the son thinks not. Not yet.”

“When then? What’s happening now anyway?”

“We off-loaded her, she looks a little bit better. Going home tomorrow. Big care package.”

“And did you do a DNACPR?”

“She didn’t want to discuss it. But we did it.”

“And pall care?”

“We’ve asked the GP to refer in the community…”

Dr C walks away. She is sure she was right to start that conversation. She is sure that her intervention, although painful, has set in motion a series of conversations and decisions that will, ultimately, benefit the patient. But the fact is, she has caused some harm, in the short term. Harm to Jean – who was upset; harm to the son, who walked into the aftermath; and harm to herself, who now feels like an evil-doer.

Wouldn’t it have been simpler, in this case, to respond to those early vibes – Jean’s evasions – and walk away? Isn’t it appropriate, sometimes, for a patient’s desire to avoid the hard questions to be respected, even it means they meet death in a relatively unprepared way. Even if it means that there is no DNAR decision, no stated preferences.

Or did Dr C misjudge things?

At the end of the day, it was Dr C’s opinion – her accumulated wisdom on such matters – vs the patient’s own instincts. The patient’s preference in fact. A preference not to engage, until the writing was truly on the wall. A preference Dr C tried to overturn.

As a result Dr C became a little more cautious, and a little more ready to leave things as they are. Her career would probably see many such corrections, one way or the other.

(Fictional case)

 

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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.

 

Conclusions

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…

 

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

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