Communication challenges

Birthday party

Lonely birthday by Stephen Davies

It was time. After a week in hospital Mrs G, in her late 80’s, had failed to improve from a chest infection. Her frailty meant that the chances of making it out of hospital were shrinking. We were duty bound to discuss resuscitation. I knew what I thought: there was no way it would work. Before we entered the bay, I asked the team what they thought – all agreed. Was that their true opinion, or where they just following my lead? All one can do is ask. I looked to the senior nurse. She agreed too. It was not a difficult decision, medically. “By the way,” said the nurse, “It’s her birthday.”

            I approached the bed space. Mrs G was drowsy, but a hand on the shoulder and gentle rock caused her to wake. She had all her mental faculties, full ‘capacity’, as we say. I knew already that there were no family members living nearby. I started in the usual way, with a brief examination and review of the latest blood tests. Then I prepared to deliver my line – ‘I thought we should talk about what might happen if you get worse… if your breathing or your heart deteriorates… there’s a chance that your heart could stop suddenly… it’s called a cardiac arrest…’

            Her thin arm lay outside the sheet, and I glanced at the name band. The date and the month… today. There were no cards, no flowers. I paused. Was she even aware? “It’s your birthday,” I said. “Yes,” she replied, in a neutral tone. It had no significance for her. Birthdays are only as special as the people around you.

            Images of her as a young girl waking up in a state of excitement, 80 years ago, entered my mind. The juxtaposition between youthful health, optimism, a life not yet lived, and present reality… was stark. My words, formally raising the prospect of death, would symbolize the end of the dreams and ambitions she had nurtured. Perhaps most were fulfilled. I did not know.

            “Well, happy birthday anyway,” I muttered. She smiled weakly. We moved to the next patient. The tasks we had set ourselves – agreeing limits of care, completing a DNACPR form – were incomplete. “Not today,” I said to the team. “Not today.”



[Patient details changed.]


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.



The gentle fiction


‘Through rose tinted spectacles’, by monstercoach


This time I was going to give the hard news. That was my agenda. He had been in out of hospital a few times, his cognitive and physical status fluctuating due to the underlying condition. There was no cure. So in they came to the clinic, husband and wife, beyond middle age but not yet elderly. I got into it quickly,

“So… the last few months, I’ve noticed, you’ve got weaker every time you’ve come in. The complications have been more difficult to get over. At home… you’re not getting out…”

He said nothing. Perhaps today was an off day, mentally.

“So we need to think about the future. What should we do next time you come in. And if you get really ill, an infection, or…”

His wife shifted in her seat.

I went on, using words I have used many times. About how there was only so much we could do if he deteriorated. About the possibility of spending his last days or weeks at home, if it looked like he might be dying. About things that might happen suddenly. Uncomfortable considerations, but necessary.

“But doctor, he’s doing OK really, isn’t he?”

What? Where was this coming from? I moved by gaze from the patient to his wife. She was winking at me. A classic, conspiratorial wink. No, I would not have this….

“Well, it’s important that we are very clear, and honest, about what we have seen over the last year. It’s been a downward trend…”

“But at the moment, he’s stable isn’t he? He’s alright.”

I looked at him. He was looking at her.

“Don’t want to hear any bad news, do we?” she said.

“No. No. There’s enough to worry about in the world…” he replied, laughing quietly.

I paused. The signals were clear. This was not the time to push it. So I changed tack.

“Well,” I continued, “To be fair, you haven’t been in for two months now. The new drug we gave you for the confusion seems to be working. And…” I turned to the computer, “Looking at your numbers, your blood tests, there hasn’t been much change there either. So yes, pretty stable!” I was getting into it now. The conspiracy of optimism. He needed this –  this gentle fiction.

We wrapped things up. I had achieved nothing definite in terms of anticipating how to handle future crises. We would have to see how it went. So much for my agenda. Perhaps that was the problem, developing an agenda in isolation.

“Back in two months then?” I suggested, “Unless you have to come in earlier.”

They walked out. There would be another time. Or, more likely, the hard truths although fully understood, would remain unsaid until the very end.


(Details changed)




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The guiding hand

guiding hand1

M.C. Escher – Hand with reflecting sphere


It’s a common enough feeling but one that is rarely expressed. This patient did express it – or at least her husband did for her.

The patient had undergone multiple investigations and several procedures during three stays in hospital. Her GP had referred her for a review on account of weight loss and worsening debility in the hope that something could be done to improve her condition. Her anxious family described how she had gone downhill despite all that had been done. I nodded, unsurprised. That’s what illness, infection and hospitalisation do. Then her husband said,

“And during all this time, nobody has really treated her as a whole person.”

I paused. Rather than letting the comment slip by I asked him what he meant by that. Because everything that happened seemed logical and correct to me. Her condition has been a serious one, but the underlying pathology had been recognised and treated. Nature had determined that during this time energy was drained from her. It was not a result of neglect or mismanagement. But I knew what he was getting at. Her course had been punctuated by episodes of acute deterioration, and procedures had been done on an urgent basis. Several consultants had been involved, several teams, comprising what, twenty doctors? Onward plans had been made as she was discharged from each episode. Her general practitioner, kept up to date with cryptic discharge summaries, had observed with a careful but non-interventional eye.

I told them the story of her illness, as I understood it. A nine month saga. To catch up, to provide a sense of continuity in respect of the whole person, required careful explanation. As I explained what had led to what and why, the patient’s expression lightened and reminded me of the pupil who suddenly begins to understand a principle of mathematics or chemistry. It all began to make sense.

She left the room looking and sounding better. I had done nothing physically significant.

The reason I asked – or challenged – her husband as to what he meant about a ‘whole person’ was because I thought her treatment had been good. It was thorough, timely and appropriate. Yet for some reason it has not been satisfactory. True, she was not as well as she or her family expected her to be at this point, but the future was bound to see a gradual improvement. What more could have been done?

It struck me that what this patient and her family needed was not a minute assessment of each symptom, nor more frequent clinical reviews, but a degree of confidence that there was a guiding hand behind the arrangements that had been made. She felt like a pinball, shunted this way and that by unplanned events and opaque decisions. I knew, having read the correspondence with a better understanding of why each step had been taken, that there was a sensible guiding hand. Yet that hand was invisible to the patient, despite the name of the primary consultant being clearly visible on documents and procedure notes. The presence of a central pivot and controlling mind had not been made manifest through clear and measured communication.

What she actually needed, I concluded, was a more confident perception of where she and her body stood in the natural history of the disease that had afflicted her. If she could visualise better how her symptoms related to the diagnosis on her papers, she would feel less of a wanderer in the unfamiliar territory of illness.

Is it a luxury, to be told in plain terms what is going on? It would seem so, judging by the number of patients who appear bewildered in the maelstrom of events. I can understand why it happens. For doctors dealing with rapidly developing conditions or emergency situations the priorities are clear – make a diagnosis, make a decision, and treat. It is medically correct. Then, when the treatment has been completed and the anticipated response has been confirmed, the pressure is off. This would be the time to sit down and describe what has happened. But this recap often does not take place. New and more pressing cases have arrived in the hospital. Sometimes it is the most junior member of team who is left to tell the story and they may not understand all of its elements. They will certainly be unsure how to frame the future. The patient is discharged ‘better’, safe, but relatively disorientated.

So, my conclusion from this reflection is that a ‘holistic’ approach to medicine is actually quite easy to deliver. It does not require the specialist to delve into every symptom or system outside their comfort zones. It does not require them to be the patient’s GP (specialists are notoriously quick to deflect non-specialised problems back to primary care without so much as hearing patients out). It may be enough just to explain what is happening and why, where the patient sits in the network of involved teams and processes, and how the guiding hand that is rarely visible does actually exist. This hand is not omnipresent or dedicated solely to one patient. It does not promise to sense and respond to every little change. The guiding hand must make decisions and then pull away for a while to get on with other tasks. While it is away the patient may need to guide themselves. This is possible, but only if patients have a clear perception of where they stand in the story of their illness.


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Notes on a judgment

notes on a judgement2


The judgment given in the case of Janet Tracey’s estate vs Cambridge University Hospital NHS Foundation Trust* contains lessons and warnings for doctors and nurses. There are fundamental implications, and there are subtle insights into how we go about discussing DNACPR decisions.

The judge wrote, in conclusion:

I would, therefore, grant a declaration against the Trust that it violated Mrs Tracey’sarticle 8 right to respect for private life in failing to involve her in the process which led to the first notice [the first DNACPR form]. 

The following should be read on the understanding that i) I am not a human rights lawyer, and ii) I was not there, so the comments that I make on the communication that took place between doctors and patient/family are based only on what is written in the judgment. However, any messages or misunderstandings that I take away from the judgment as a physician with a general interest in resuscitation are likely to be repeated across the country. Also, the specifics of this case were in many ways atypical, and in thinking about what this judgment means for the rest of us, I have considered more common clinical scenarios – where patients are usually older, and perhaps on a more rapidly deteriorating path.


A mandatory discussion

The principle has now been established that not being given adequate opportunity to discuss your resuscitation status is an infringement on your ‘right to privacy’, that is, the right to lead your life how you choose without undue interference from the state. This is Article 8 of the European Convention on Human Rights. Thus the manner of dying becomes a subject of discussion that patients must be engaged in (unless it can be shown, clearly, that to do so would cause harm – see below). It sounds perfectly reasonable, and such engagement is already best practise. Respect for autonomy demands it, and few doctors complete DNACPR forms without trying their best to seek the patient’s view.


But there are exceptions, and this judgment appears to belittle a doctor’s right to use their discretion in extreme circumstances. It makes mandatory a discussion that in many cases is not relevant to the patient – that is, the option of trying to bring them back to life after they have died.


Patients with end stage disease admitted to hospital with a deterioration are often identified as entering the terminal phase. They will die naturally, and with good palliation they will die comfortably and with dignity. Cardiopulmonary resuscitation (CPR) has no place in this paradigm of care. It is never going to be effective, helpful or kind. But CPR is there, it is ‘available’, and the judgment seems to have made it illegal not to discuss its merits with all such patients (and/or relatives in the case of mental incapacity).


My assertion that CPR is often an irrelevant option may sound paternalistic. This requires examination, because there appears to be a discrepancy between how important doctors feel CPR is, and how important patients or families feel CPR is.


The diminishment of a symbol

Experienced hospital doctors will have seen scores of patients fail to recover from CPR, and will have witnessed many CPR attempts that are cut short after a minute or two once the insanity of the situation becomes clear. To many doctors CPR has become an unwelcome and frequently harmful intrusion on the natural deaths of frail or end-stage patients who receive it ‘by default’ – because their teams did not discuss it openly before the cardiac arrest occurred. All patients who die in hospital will be subjected to CPR unless a DNACPR decision has been made first. Thus the accumulation of many such regrettable experiences leads to an overall impression that CPR is over-used. Its apparently transformative potential – to bring people back to life – is diminished.


However, for patients and families CPR means something else. It is the very last hope of salvage when the patient’s medical condition has deteriorated. It can be symbolic of a person’s ‘will to live’ or their ‘fight for life’. It cannot be dismissed as an irrelevance, even if it will surely not work. This, I think, is what the judgment reveals and concretizes into legal precedent – CPR, for all its fallibility, is too important to patients and families not to be made aware of its existence and its withholding.


Most in the medical profession know this already and accept it, but my concern is that in those circumstances when it is truly inappropriate there will be anxiety on the part of the doctors that DNACPR has not yet been discussed with the patient or the family. I worry that in such cases CPR will be given to avoid the accusation, after the event, that the patient’s human rights were overlooked. The doctor’s instinct, and all their experience in such situations, may be overridden by a defensive mindset.

I will now look at some specific lessons contained in the judgment.


Documentation of the discussion

Janet Tracey did not want to talk about her end of life care, according to the doctor who wrote the first DNACPR order. He is quoted as saying,

“Mrs Tracey did not wish to engage in discussion relating to her care and prognosis. On occasions when I attempted to initiate discussions with Mrs Tracey regarding her treatment and her future she did not want to discuss these issues with me.”

This impression is backed up by the patient’s husband who indicated that,

‘Mrs Tracey felt “badgered” by the attempts of the doctors to discuss her end of life treatment with her.’

Ultimately however, the doctor did achieve some sort of interaction with the patient. In the judge’s words,

‘It was Dr ______’s evidence that he broached the issue of DNACPR with Mrs Tracey, explained what it meant and that she nodded to indicate her agreement to it. He then completed the first notice.’

She nodded. This was sufficient, in the eyes of the doctor, to be taken as agreement. However, the judge is concerned that,

‘If Dr ______ had such a conversation, it would have been of importance to note the same both on the DNACPR Notice and in the medical records. I am unable to accept that the absence of such a note is a result of no more than poor record keeping.’


‘There is nothing in the medical/nursing records which suggests any agreement to DNACPR by Mrs Tracey. The tenor of entries prior to 4 March 2011 indicate that Mrs Tracey either did not agree or requested that any such discussion take place in the presence of her husband or daughters.’


‘In the absence of any documentation and in the light of what is known about Mrs Tracey’s view on the issue of resuscitation around the time of the first Notice, I am unable to accept Dr ______’s evidence that he spoke to Mrs Tracey about resuscitation prior to the implementation of the first DNACPR Notice.’


The judge does not believe that a DNACPR discussion  took place. There was nothing to back it up.


Distress vs harm

The average doctor’s defence for not discussing DNACPR in a situation where it is plainly inappropriate to resuscitate, is that it would be positively unkind to bring it up with the dying patient. To steer the conversation towards a procedure after death that cannot work seems perverse…and may cause distress. This case hinged around the issue of distress, or a doctor’s fear that to discuss DNACPR explicitly would cause distress.

We have seen how Janet Tracey appeared unwilling to engage in discussions about death. It is reasonable, in my opinion, to assume that forcing her to talk about it would have caused distressed. In light of the concern that to insist on a discussion would be unkind, the judge accepts that,

‘It may well be that such a concern also caused him to spare her a conversation which he knew was likely to cause distress to a suffering patient.’

But the judge does not feel that ‘distress’ is sufficient reason not to insist on that discussion. Hence,

‘In my view, doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them.’


‘Many patients may find it distressing to discuss the question whether CPR should be withheld from them in the event of a cardio-respiratory arrest. If however the clinician forms the view that the patient will not suffer harm if she is consulted, the fact that she may find the topic distressing is unlikely to make it inappropriate to involve her.’

Only if we feel that the discussion will truly cause harm does there appear to be an exemption;

‘There can be little doubt that it is inappropriate (and therefore not a requirement of Article 8 to involve the patient in the process if the clinician considers that to do so is likely to cause her to suffer physical or psychological harm.’


In these cases we will need to be very clear, in the notes, as to our reasoning that harm may occur. I am not sure how we as doctors will articulate that reasoning. When does distress become harm? Isn’t any distress harmful, in the context of the dying phase? Or should we accept that dying is distressing anyway, and a little extra distress is a small price to pay for obtaining our patients’ full opinion on the matter? We need to come up with an answer to this.


Clarity, brutality

It seems that the doctor failed to be clear with the patient’s family member about what DNACPR actually was. After having a discussion about it with a doctor she left the hospital, but then looked up what the decision meant in more detail, on the internet. Having realised that her mother actually being deprived of a potentially life-saving intervention she came back to the team with a challenge, and the order was rescinded.

The judge writes,

‘…whether in a wish to spare her the harshness of a graphic explanation of CPR or a belief that in using words such as ‘slip away’ he was conveying the entirety of such a scenario, I believe that the entirety of the position was not fully understood by ______”

This rings true. It is very easy not to go into great detail, and there are several reasons for this. Primarily, I believe, doctors who have already made the medical decision that CPR is not appropriate are unwilling to describe its ins and outs because to do so is, once again, irrelevant. It distracts from the subject of most importance, how to manage symptoms in life, not what to do after death. If ‘graphic’ descriptions are given, it can begin to feel positively gratuitous. However, one lesson that this judgment provides is that we should make very sure that the relatives of our patients do understand. That may require some unpleasant conversations, and not a little emotional harm. We must learn how to do this well.


An allowance

The judge seems to make some provision for difficult cases. It should be remembered that the focus of this case was a mentally capacitous patient’s apparent unwillingness to be involved in discussions, and the doctors perception that to engage her in the discussion would be psychologically harmful – the judge was not convinced about this, and did not find written evidence in the notes to support the doctor’s case. The judge writes,

‘I recognise that these are difficult issues which require clinicians to make sensitive decisions sometimes in very stressful circumstances. I would add that the court should be very slow to find that such decisions, if conscientiously taken, violate a patient’s rights under article 8 of the Convention.’


The obverse

Finally, this judgment can be read the other way round. Having established that talking about one’s treatment after cardiac arrest is important enough to require legal protection, we must consider the situation where CPR is performed when the patient would not have wanted it.  The legal principle of anticipatory discussion applies bith ways, as highlighted in a Resuscitation Council statement released shortly after the judgment. Basically, it is as irresponsible to permit, through failure to discuss,  inappropriate CPR as it is to withhold it. They write,

‘The RC (UK) considers that Article 8 may be engaged and potentially breached also should a clinician not consider an anticipatory decision about CPR with or for a patient who is at clear risk of dying or suffering cardiorespiratory arrest. Failure to consider a decision about CPR or to ascertain the patient’s wishes in relation to CPR (or the views of those close to the patient without capacity) may leave such a person at risk of receiving CPR that they would not have wished to have and that could have been avoided had the matter been afforded appropriate consideration and discussion.’

The message is – think about CPR early, talk about it bravely but sensitively, and write everything down.





* A case was also brought against the Secretary State for Health, in relation to his possible duty to ensure a standardised DNACPR policy for the NHS. I will not go into that part of the judgment here, although in summary, the appeal court found that there was no obligation on him to impose a centrally designed policy.

notes on a judgment


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Interactive Ward Ethics 1: Collusion

untitledWelcome to the first interactive medical ethics adventure on the Illusions of Autonomy blog. You will guide an experienced trainee doctor, Nina Charan, through a difficult but not uncommon scenario, and in exploring the consequences of various decisions will experience the risks and pitfalls that are encountered on medical wards. It may end after just two decisions, or it may require 5 or 6 to reach a conclusion. Feel free to go back and forth, using your web browser’s back arrow, or the ‘Back to Section 1’ link at any time to reset. It’s not really about getting to the end – more the ups and downs that occur on the way.

The first scenario concerns an elderly lady whose son forbids the medical team to tell her about a serious diagnosis.

Good luck! Click here to start.


NB. Nina Charan is the main character from my novels Proximity and Extremis, in which she becomes involved in a medical ethics conspiracy. In these adventures she will appear to function in isolation, but it can be assumed that the decisions she makes, that you make for her, represent the view of the whole team including the consultant.

The turning away

dorian grey

Detail from cover of ‘The Picture of Dorian Gray’ by Oscar Wilde

When I tell him that his liver is so badly diseased it may not recover, he turns away and looks into the middle distance. There are no questions. He was expecting this. He has probably known that it would end like this for several years, perhaps a decade. But even this foreknowledge could not change his behaviour. He continued to drink, and now, at the age of 4_, he is approaching the end of his life.


I want to ask him why he couldn’t stop. Naïve I know – but doesn’t the prospect of death outweigh the immediacy of compulsion? After all, he was well supported at home; he had every opportunity to arrest the damage in its tracks and live to a decent age. I would like to know why…what was going on in there? But we are well past that now. Serious complications have set in, and all I can do is treat each one as it develops. He clearly doesn’t want to talk about it, and I am not comfortable pushing him.


When all the patient really needs is treatment there seems to be little place for such enquiries. The answers will add nothing; the questions will do no more than suggest to the patient that he did this…he had a choice. In contrast to patients who hold our gaze with a combination of anxiety and confusion, and ask ‘Why me?’, the alcoholic has all the information he needs. Whatever the truth, wherever the blame lies, those factors are irrelevant now. That’s why he looks away. There is nothing to say, nothing to explore.


Understanding why patients made certain choices does not allow us to reach into the past and shake them to their senses, or reveal to them a picture of their future selves – debilitated, jaundiced, desperate. A fortunate percentage will survive their first emergency, and with abstinence will see their liver improve. Some may even be judged appropriate to receive a new liver. But what of those who continue to deteriorate, and who in turning away seem determined to keep their personal truth to themselves? Does this aversion to allowing us beneath the surface impair the quality of care that is given?


It might. Doctors are not brilliant at digging into patients’ private lives or hidden histories. If, through an embarrassment of regret, a patient seems unwilling to discuss the behaviour that resulted in this crisis, the path of least resistance may lead doctors to a superficial degree of emotional engagement. Deeper knowledge of the patient is not acquired, the picture remains sketchy, and empathy does not develop. This may translate to a failure of advocacy. Doctors, who spend their days trying to determine if and when to escalate or intensify care, need to know that the patient wants to recover. They are driven, in large part, by the patient’s expressed wishes. If the patient appears determined to survive, and says as much – ‘I don’t want to die doctor, please do your best to get me through this, I want to deal with this…’ – the medical team is more likely to advocate for intensive care or prolonged support. Patients who remain silent and closed may appear uninterested in their own survival.


I worry that those who turn away deprive themselves of the opportunity to be known or understood, and are subsequently less likely to receive the best that medicine has to offer. The challenge, for those of us who receive them on the ward, is to prise away the (un)emotional armour and find out what they are really thinking. It’s not comfortable, it may feel intrusive, but it is probably necessary.



Candour crunch: being honest about risks in healthcare

The report Building a culture of candour – A review of the threshold for the duty of candour and of the incentives for care organisations to be candid’ makes very interesting reading. It seeks to define levels of harm that should trigger an approach to patients and relatives, and explores how organisations can be encouraged or compelled to develop a culture that facilitates this. It also touches on the realities of the ‘post-paternalistic’ era and the demonstration of candour in day to day practise.

Two excerpts:

‘Modern medicine offers an abundance of hope, but very few absolute certainties. One of the comforts (some would say benefits) of paternalism was to obscure this lack of certainty for patients. This is no longer sustainable, and it means that being candid when things go wrong needs to be grounded in being honest about what could go wrong from the start. Better conversations about risk and the potential for harm are essential for fostering a culture of candour…’

‘Clinical care is inherently risky, and while organisations and individual clinicians must do all they can to minimise those risks, it will never be possible to eliminate them fully.’

These appear to encourage a greater degree of upfront honesty about the risks of healthcare, rather than waiting for mistakes or unavoidable adverse events to happen before ‘owning up’. We could, fancifully, call this ‘pre-candour’.

I find the balance between upfront honesty and the provision of ‘too much information’ a hard one. Not all patients need or want the same depth of information about risk, even if, objectively, they face similar chances of accidental injury or death.

Opportunities to be open about risks begin in the Emergency Department or Admission Unit. Here I sometimes find myself explaining that coming into hospital is never routine, and that being on a ward brings with it physical and psychological risks. Sometimes this is part of the explanation as to why a patient should not be admitted. An example would be a young patient with a headache that does not sound suggestive of meningitis or haemorrhage; coming into hospital will not achieve anything, but they may have been led to expect admission to a ward, and may require convincing that it is right not to come in. The same might be true of a more elderly patient with a mild chest infection; they are weak and tired, they might benefit from three days in hospital, but if it is not entirely necessary, medically. A case may need to be made about why the risks outweigh the advantages. One begins to speak of ‘infections’ or ‘picking up bugs’. Is it appropriate to be negative about hospitals, and their inherent risks?

The ‘hospitals are dangerous’ mantra is unhelpful, but it is dishonest to portray hospitalisation in a neutral way. Henry Marsh, a (clearly disillusioned) neurosurgeon, wrote in the Independent newspaper recently that hospitals are

‘… like prisons and there’s a huge lack of insight into what a ghastly environment they are.’

This is depressing, but he has a point. An alert patient admitted to a general ward for more than a few days is likely to witness distress, disability, physical dependency, acute confusion, wandering, incontinence, the ravages of addiction and sadly, death at close quarters. Even with the most attentive and compassionate nursing, these aspects of frailty and illness cannot be hidden from the watchful.  Patients of all ages have mentioned to me how eye-opening and challenging the experience of being an in-patient was. It does not seem unreasonable to explain some of these things in advance.

As to the physical dangers of hospitalisation, the degree of detail we should go into varies. Hospital acquired infections overall are less frequent nowadays (the incidence of MRSA and C Diff has fallen dramatically in recent years), but hospital acquired pneumonia does remain a common development in the frail population. Should we explain this, or quote the incidence? Do elderly patients and their families, who are coping with the news that they are ill and need to be admitted, need to be told that ‘…by the way, there’s a chance you could catch something else as well…’?

A discussion about upfront candour is essentially a discussion about informed consent. In the context of planned procedures, this is clear and simple; we know which risks require explanation, the patient is enabled to understand these risks in relation to the benefits, and they agree or decline. But when we are discussing admission in the context of acute illness, the use of powerful antibiotics or drips that might facilitate the entrance of organisms into the blood stream, consent seems less relevant. The patient has no real choice about whether to come in or not. They are ill. To compound the stress of the situation by enumerating the additional risks may well be ‘too much information’.

The post-paternalistic culture in which we work emphasises that patients are our equals, partners in care, and nothing should be hidden. However, we must surely remain sensitive to the fact that patients are also vulnerable, and may, in certain circumstances, be happy to ‘have things done to them’ without full and frank discussion. All doctors will recognise the scenario of the patient who has halted them mid-explanation with the phrase, ‘Doc, just do what you need to do, OK.’

The key, it seems to me, is in modulating the degree of openness according to the patient’s condition, its severity, its acuity, and the signals given off by the patient regarding their need for information. This modulation depends on the doctor’s ability to understand the context and judge the person in front of them. Perhaps this requirement on the part of the doctor is itself paternalistic, as we are once again putting the doctor’s interpretation centre stage.

Paternalism is always tempting. It makes life simple. As the authors of the report write, ‘One of the comforts [ ] of paternalism was to obscure this lack of certainty…’ If things go to plan, and nothing goes wrong, the patient who was not been subjected to a conversation about risk will leave the hospital oblivious to the dangers that they faced, and their experience will in retrospect seem serene. If we are to encourage more ‘pre-candour’, we must be prepared to help our patients understand and accommodate the anxiety that may be engendered. This will require time to talk, time to listen, and time to answer. This is the price of candour, and of true partnership in healthcare.



Two rooms


Scene from the play Two Rooms

Doctors speak several dialects, and the contrast between that used with patients and that used with colleagues can be stark. I sometimes wonder how patients would react if they heard every conversation that concerned them?

Such a notion seems absurd, practically, though they surely have a right to such access. We have already been through a process of openness with letters, which used to be sent to GPs but not patients. There was a vogue to ask patients if they wanted to receive them, and now patients get them automatically (in my experience anyway). This has caused a change in the way letters are written, such that doctors tend to avoid opaque medical terms and provide more accessible explanations. Personally, I still write in a ‘doctor- to doctor’ way, as the GP is the primary recipient, but I know that if I use lots of acronyms or eponyms the patient will a) be excluded from the thought processes behind their management and b) likely to hold up a highlighted copy when I next see them in clinic.

But back to the conversations. If there is a suspicion of cancer, for instance, it is common to discuss a patient’s condition and scan results in a multidisciplinary team (MDT) meeting. MDTs are designed to bring the opinions of several specialists to the table, for example: surgeons, oncologists, specialist physicians, nurses and dieticians. Some of these meetings go on for hours. Cases may require prolonged discussion, and can become heated if opinions are not in alignment. But other cases are easy, because it is clear that nothing to be done. The liver may be overwhelmed with infiltrates of cancer. Conclusion: no treatment options – palliative care only. Somebody might say, ‘Hopeless’. They are not being heartless; they have never met the patient. But it’s just true. Next patient. It may have taken no more than a minute to reach that conclusion. It is medicine at its coldest and at its most efficient. Time will be spent on the ones for whom there is a therapeutic option, a chance of cure or prolongation.

As soon as practically possible the patient is seen and the results are communicated to them. We move to the second room. As much time as necessary is taken to break the news, and, if done well, the scene will demonstrate medicine at its most compassionate. What a contrast.

If the patient had witnessed the MDT discussion they may well have been sickened by the speed with which their case was dismissed. What about all the other details? Their wishes, their social situation, their feelings… but no, those aspects were not relevant. It was, to be brutal, a technical decision. Too advanced for surgery; too frail for chemotherapy.

Each discussion has a distinct purpose, and each requires a different set of medical skills. To perform well in each environment a doctor has to adapt. Engage emotionally when required, but remain objective, scientifically accurate and evidenced based at other times. To bewail the lack of a more holistic discussion in the MDT would not be appropriate – it would not meaningfully contribute to the decision, and it would hold up the flow. The doctor or nurse in that meeting who actually knows the patient might find it too cold, and might experience a degree of dissonance as everything they have learnt about this unfortunate person is shorn from the presentation. But, come the face to face meeting, all those details come back into play, and are, of course, essential.

What does this contrast tell us? It suggests to me that there will always be a place for compartmentalisation. The modern, post-paternalistic culture, perhaps best summarised in the phrase ‘no decision about me without me’, seems to reach a limit in circumstances where highly focussed and specialised discussion must take place in a clear, unemotional atmosphere. MDT meetings are a necessary but, at times, somewhat surprising throwback to the sacerdotal, impenetrable practice of medicine in centuries past.


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In hospital medicine, long term relationships with patients are rarer than one might expect. During training (which lasts until your mid-30’s, and even longer for those who prevaricate!) it is unusual to stay in one Trust for more than a year. Becoming a consultant allows such relationships to develop, and this adds a depth of understanding and reward that cannot be experienced as a trainee. These are with patients who have chronic conditions, who attend clinic regularly, and who are occasionally admitted to the ward with complications; they comprise a small number compared to the thousands of ‘one time only’ interactions that take place each year. The irony is that while familiarity leads to trust and sincerity borne of shared experience, it is the fresh, short term clinical contacts that present the gravest clinical and emotional challenges. In these circumstances doctors must learn how to fast-track the communication strategies that will have already developed when meeting a long term patient. The classic example is talking to the patient with a new diagnosis of cancer.

In my mind breaking bad news follows a U shaped dynamic; constructive, forward planning allows the patient to be lifted from the despondency into which the word ‘cancer’ will have dragged them. By talking about what can be done, who they are likely to meet, resources and timescales…glimmers of hope may begin to permeate the gloom, and the certainty of death is diluted. The presence, ideally, of a cancer nurse specialist, reassures them that there will be continuity and reciprocal contact. Together we talk about the support that will be available, and the priority that will be given to their case.

But it is here that the limited nature of my role as ‘first contact’ begins to become clear. For however empathic my style, and however embracing my words, I know that I will have very little do with what happens from now on. As the patient (and family members, if present) look at me and the intensity of the situation burns its way into their memory, I know that it is not my face that they will be seeing in clinic. It will be that of the oncologist, or the surgeon (should the tumour prove operable). Already I am beginning to deflect responsibility to others – ‘the oncologist will talk to you about that…’, ‘they will decide if you should have surgery in a special meeting, the MDT…’ ‘You’ll get an appointment very soon to see one of the lung doctors…’

Sometimes you do meet the patient again – if they become acutely unwell. This might be due to chemotherapy induced bone marrow suppression and sepsis, an inter-current pneumonia; anything that requires admission via the ED. They might just happen to be admitted when I am on call, just as they happened to come in under my care the first time. There may have been an interval of two months. She looks worse. You read the notes, and catch up on all that has been going on. Appointments here, procedures there, PET scans, problems…  You wonder if any of the things you said came true. Did the oncologist discuss prognosis with you – did you ask him the ‘big’ question (‘How long?’) that you asked me? Did the appointment come through? Did you wait too long? Did the nurse specialist call you to keep you informed? So much has happened since that first shocked conversation by the bedside, curtains drawn, your husband leaning forward, staring at the tops of his shoes mutely…the day I broke the news and tapped into your deepest fears.

It is not possible to remain involved in every patient’s journey, especially when their illness falls outside our own area of expertise. The best we can do, it seems, is deliver the first message skilfully and with conviction, while hoping that the promises we offer are realistic, and the undertakings we take on behalf of our colleagues are achievable. Beyond that, we cannot realistically hope to observe their progress or influence their experience. Trainees on the ward soon experience emotionally intense interactions that seem to be over just hours or days after they have begun. A working week might involve many such micro-relationships, and learning how to move nimbly  – but not too smoothly – through this gauntlet of emotions is hugely important.


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