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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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‘That’s not my area’

that's not my area

An account, written for the Guardian by an elderly patient’s daughter, described how nobody treated her as a complete person in hospital.

“Nobody will look at the whole of me,” my mum said on her third stay in hospital this year. “It’s like a department store. You go to a bit of it and they say, ‘Sorry we don’t do that here. We just look at this.’ Nobody is interested in my legs.” Her legs were massively swollen, dry and cracked and purple-black by this time.

It was a heartfelt cry for holistic care. And it touched a nerve in me, because I have heard and received similar accusations in my role as a hospital consultant. It got me thinking – What is expected? What is it that patients want?

The answer might seem obvious: Doctors and nurses who do not focus on individual systems or organs. Teams who address their patients with respect, as people with a past, a social existence, a meaningful and self-determined life lived for many years before circumstances forced them through the door of the hospital. All lovely… but what specifically? Patients want their thoughts and ideas heeded, their opinions acknowledged and taken seriously while treatment plans are formed. They want medically ‘trivial’ complaints given as much time as major diseases, as it this these that can irritate or reduce quality of life just as much. They want clear feedback on the innumerable tests. They want to know the plan and comment on it. They want to know how long it will all take. These considerations do not seem revolutionary; they seem nothing more than… decent. Nevertheless, it seems that we often fail in delivering such unspectacular aspirations.

As a consultant I am always careful to explore the broader reality beyond the defined limits of the specific organ or bodily system that has broken down. Well I try to. This approach is not entirely consistent, because there are times when a rigid focus on the area of danger has to be maintained. Patients and families understand this, I am sure. If the patient is bleeding rapidly from an ulcer, or crashing with heart failure, I may fail to probe the subtleties of their understanding and defer the social enquiries. Later, when things have calmed down, there may be time to develop a more three-dimensional understanding of the whole person.

There are other reasons why medical interactions in hospital may not feel holistic. Hospitals work by bringing specialists to the bedside in order to answer specific questions. The frail and elderly patient who has fallen, and who has multiple symptoms related, say, to a failing heart, diseased lungs and arthritic knees, might be found to have a blocked kidney. The opinion of a urologist is sought. Only he or she can give an expert view on whether an intervention is required to unblock it. They arrive at the bedside. They are pleasant, they are caring, but they have one thing on their mind – to answer the question. They will take all the facts into account; the frailty, the risks of anaesthesia, the opinion of the patient, the opinion of the next of kin if they are present (and especially if there is dementia), but they will stay focused on the urological issue. And should the patient, at the end of the consultation, ask if anything can be done about her painful knees, the urologist may well say those fateful, unpopular words, “I’m sorry, that’s not my area.”

All specialists have said this. It is no good pretending to be able to give an answer to the question. One can express an interest, but it is little more than a politeness to do so. For the knees, if symptoms cannot be controlled with simple analgesics, you need a rheumatologist or an orthopaedic surgeon. Another specialist. Another visit. Another focused consultation. Another floor in ‘the department store’, as said in the Guardian article.

How to make these consultations happen without leaving the patient feeling like the chap in the picture above who has his organs picked out, examined and put back again? Perhaps it’s about presentation and coordination. What I would want is a lead physician who comes round and sums it all up for me. Who draws specialists in to the ward when required, who assesses the advice that is given and sifts it for common sense. And in addition, perhaps, an experienced nurse who can answer some of the questions I feel too inhibited or embarrassed to ask the doctor when they came round. Like, ‘What is a urologist anyway?’

That sounds like a fair model. It is a clear aspiration, as summarised in the Royal College of Physicians ‘Future Hospital’ commission report;

Patients will receive the best specialist care wherever they are in hospital. For patients with multiple and/or complex conditions, there will be input from a range of specialist teams according to clinical need, with a single named consultant responsible for coordinating care.

It seems we are not there yet. ‘Hospitalists’, general internists who take an overview and coordinate care, may be the answer. In the meantime, geriatricians will often assume the role, for it is patients under their care who typically have multiple problems.

So finally, in response to the Guardian article, while I recognise only too well the phenomenon of ‘that’s not my area’, and admit that much specialist work does occur ‘in siloes’, I do not accept that patients are routinely managed in a non-holistic way. It’s not what I see happening around me. Most hospital care, I would maintain, is delivered in context, and with an eye to the complete picture.

***

Sparks of wisdom

 

sparkle

The judgement regarding C’s right to decline life-preserving dialysis (following a paracetamol overdose) is as fascinating and instructive as it is tragic. I have taken out some phrases and sections that caught my eye, adding my own comments along the way. The judge’s words are in italics, quotes from witnesses in quotation marks.

 

Character sketch

The judge begins with a remarkably vivid but moralistic, almost scornful character description (both in my view, and that of Guardian writer Zoe Williams). It sets the scene for C’s subsequent strong-willed approach to decision making.

C has led a life characterised by impulsive and self-centred decision making without guilt or regret. C has had four marriages and a number of affairs and has, it is said, spent the money of her husbands and lovers recklessly before moving on when things got difficult or the money ran out. She has, by their account, been an entirely reluctant and at times completely indifferent mother to her three caring daughters.

 

Previous decision making

C’s response to previous illnesses is explored. Her behaviour back then is important, because the judge draws a line from the past to the present; if she had capacity to make medically eccentric – or unwise – decisions then, why not now?

Upon being diagnosed with breast cancer in December 2014 when aged forty-nine V relates that C expressed the view that she was “actually kind of glad because the timing was right”. It is recorded in C’s medical notes that she did not want to discuss the benefits and risks associated with chemotherapy but was “keen not to have any change in size or deficit that will affect her wearing a bikini”. She refused to take medication prescribed for the disease because “it made her fat”. There appear to have been no concerns expressed regarding C’s capacity in this context.

Her daughter comments:

“My mother’s values, and the choices that she made have always been based on looks (hers and other people’s), money, and living (at all costs) what she called her “sparkly” lifestyle…her life was, from her point of view, a life well lived. I have never known her express regret, or really to take responsibility for anything, including the choices she has made”.

 

Prognosis and treatment against a person’s will

Onto the testimony of the professionals. A specialist explains that the likely prognosis,

‘remains excellent with survival fully anticipated’. However,

Dr L estimates that if C’s [renal function] is not fully recovered within a period of three months, later recovery is unlikely, with the chances of delayed restoration after three months estimated at less than 20%. In such circumstances C would require long term renal replacement therapy.

i.e. – if her kidneys don’t get better soon, she is looking at a life of dialysis three times a week.

If she continues to refuse dialysis, is it possible for her to be made to have it?

…in order to dialyse C against her will she would need to be sedated with that sedation being heavy enough to render her, essentially, unconscious for the duration of the dialysis. In order to achieve this safely the procedure would need to be undertaken in a high dependency setting. There are, of course, risks associated with heavy sedation, including respiratory depression and low blood pressure which may in turn necessitate further intervention including intubation and ventilation.

This illustrates how, despite all the theoretical discussion about capacity, at the end of the day a patient can easily turn away from treatment that she does not want. We see similar situations in general medicine, for instance when elderly confused patients without capacity are deemed (in best interests meetings) to be appropriate for nursing home or residential home. If they don’t want to go, they won’t!

 

Unwise decisions ≠ unsound decisions

The wisdom of C’s decision making leads to an interesting discussion. The judge clarifies that a person who makes an unwise decision which appears so ludicrous as to be, in our eyes, evidence of a disordered mind, cannot be assumed to lack of capacity; 

…the fact that a decision not to have life-saving medical treatment may be considered an unwise decision and may have a fatal outcome is not of itself evidence of a lack of capacity to take that decision, notwithstanding that other members of society may consider such a decision unreasonable, illogical or even immoral, that society in general places cardinal importance on the sanctity of life and that the decision taken will result in the certain death of the person taking it..

Capacity is actually, in the words of a previous judge, “the capacity actually to engage in the decision making process itself and to be able to see the various parts of the argument and to relate one to another”.

Thus, …a person cannot be considered to be unable to use and weigh information simply on the basis that he or she has applied his or her own values or outlook to that information in making the decision in question and chosen to attach no weight to that information in the decision making process.

 

Too close?

Now the judge, having heard testimony from medical staff who looked after the patient, questions their ability to assess capacity objectively. 

…the court must be aware of the difficulties which may arise as a result of the close professional relationship between the clinicians treating, and the key professionals working with… in cases of vulnerable adults, there is a risk that all professionals involved with treating and helping that person – including, of course, a judge in the Court of Protection – may feel drawn towards an outcome that is more protective of the adult and thus, in certain circumstances, fail to carry out an assessment of capacity that is detached and objective.

Presumably he is saying here that a group of clinicians who have invested so much effort and expertise is ‘saving’ a patient are not the best people to comment on whether it is right for that patient to make a decision that will lead to death. This I find controversial, but is of course why clinicians must send such difficult cases to the Court of Protection.

 

Psychiatrists vs the judge

There follows some detailed analysis and comparison of psychiatric reports, focussing on a possible personality disorder, and on C’s ability to retain information and weigh it up (critical elements of mental capacity). C is said to express an “an overvalued idea that her quality of life will not improve and that she can die in a hospice.” A psychiatrist …was concerned that the main driver of C’s decision appeared to be her categoric belief that the timescale given to her for recovery had passed. C considered that this meant she would not recover and did not want a lifetime of dialysis.

The psychiatrist concludes that “She is unflinching in her belief about this. I think this could be significantly influenced by her personality traits and as such are affecting her ability to use and weigh evidence presented to her thereby affecting adversely her ability to make a capacitous decision.”

In addition, again according the psychiatrist, “This unexplained and seemingly irrational decision is not met with significant using and weighing demonstrably ending with a capacitous but objectively assessed unwise decision.” C is unable to take “a balanced, nuanced, used and weighed position”.

 

Junior doctors – every note counts!

Now reference is made to notes made by junior doctors on the team. I found this interesting because it reinforces the point that the opinion of any qualified person has value and may be used in such complex cases. The judge refers to notes made by SHO’s several times, and these notes, being supportive of the judge’s final conclusion, were clearly important. For instance, 

On 18 October 2015 Dr K (SHO) considered that C displayed capacity when expressing her wish to forgo further treatment and to move to a hospice. On 19 October 2015 Dr V recorded that C displayed signs indicative of capacity (understanding, weighing up, retaining and repeating information) although capacity was not clear cut

And,

C was recorded by Dr O (Liver SHO) as being clear in her understanding that without dialysis, adequate nutrition and treatment of her liver she would die and, within that context, as being able to take in the medical advice and fully understood the risk of refusing treatment.

 

The patient’s words

What of C’s account. At one point she said,”I know that I could get better; I know that I could live without a health problem, but I don’t want it; I’ve lost my home; I’ve lost everything I’d worked for; I’ve had a good innings; it’s what I have achieved.”

And,

“I don’t want to do weeks or months of this…I have been through horrible stuff. I am not prepared to do that again. They are doing their best to do everything they can for me and unfortunately that is not what I want”

“I am not prepared to wait for the possibility that my kidneys will get better”

“Everything is ‘ifs and ands and pots and pans’. My quality of life won’t be what I want. I will be a burden”

“No, I’m not going to have weeks of this. I am at peace with myself”.

“I want someone to say I can’t do this anymore. Everyone makes a choice. It would be nice if they could give me some choice. I am not getting any choice. I am getting wheeled along. It’s a bit unfair.”

 

Burdens

The judge then explains his interpretation of the ‘risks’ (or burdens) of ongoing treatment;

These reasons include the risk of a life lived on dialysis, the risk of long term disability, exhaustion with treatment and her wish not to endure further weeks or months of the same, her wish not to continue to endure the symptoms and pain associated with treatment, the risk she will not be able to attain her former lifestyle, her desire not to get old and lose her appearance and her wish to attain her original goal of ending her life.

The importance given to wider goals, beyond survival, is a particularly interesting point.

Then,

That C considers that these factors outweigh a positive prognosis and the chance of life that it signals may not accord with the view that many may take in the same circumstances, and indeed may horrify some

C has an impairment of, or a disturbance in the functioning of, the mind or brain, the evidence as to the precise nature of that impairment or disturbance was far from conclusive. Further, and more importantly, with regard to the question of causation, and in particular whether what was being seen might be the operation of a personality disorder or simply the thought processes of a strong willed, stubborn individual with unpalatable and highly egocentric views the evidence was likewise somewhat equivocal.

Finally, I of course bear in mind that my decision does not accord with the considered opinions of two very experienced psychiatrists.

 

Conclusions and reflection

The judge finds that,

 

As a capacitous individual C is, in respect of her own body and mind, sovereign.

 Accordingly, although rightly brought, I dismiss the application of the Trust for declarations under the Mental Capacity Act 2005.

 

What should healthcare workers take away from this? It’s an extreme case which was resolved in the venue of last resort, the Court of Protection, so it is unlikely that its lessons are translatable into everyday practise. So how does it help medical professionals when they find that their advice begins to diverge from the stated goals of the patient? The first instinct, when patients ask for things that make no sense, is that they are not right in the mind. Their capacity becomes questionable. The judge here provided an interesting analysis of how assessment of capacity can become circular: her goals are not consistent with a sound mind, therefore we must doubt the mental processes that have developed those goals.

Secondly, I find myself feeling for the clinical team. It is easy to criticise them for ‘taking it all the way’ to the courts, and for allowing themselves to engage in a legal battle with the patient. I don’t read it this way. The preservation of life was of course their primary aim during C’s acute illness, but as it became clear that she did not want ongoing life-preserving interventions what else were they to do? Accept it straight away? Try to persuade her – at risk of being seen to coerce her? The decision is too huge, the outcome too profound, for doctors to take the burden on themselves without legal help. In the end the judge made the decision, and that sounds right. He is above criticism, legally (probably).

Another point – the significance of the SHOs’ notes. Junior doctors, as we all know now following recent contact issue, are not so ‘junior’ as to see their opinions and observations overlooked. Here, they featured as prominently in the judgment as two consultant psychiatrists.

Finally, as a supporter of assisted dying, I cannot help but make comparisons with the current legal position for terminal ill patients. The judge’s great respect for personal ‘sovereignty’ – the right of protection from interference on one’s person (e.g. a dialysis catheter), would appear to add legal weight to other patients’ rights of autonomy and control over their own deaths. But no: while this judge concludes that no-one has a right to extend C’s life against her will, no judge in the land would conclude that she had the right to pro-actively end her own life, or be assisted by a physician. Sovereignty does not help there.

***

The unwanted

horsetrader pic

Helen lay on a trolley in the Emergency Department. So far the care had been good. Her leg still hurt, but the staff seemed to be getting on with things – taking blood, injecting antibiotics, dressing the horrible wound through which bacteria had gained access to her system. When would they put her in proper bed though? They hadn’t yet decided which ward to send her to; that seemed to be the problem. The trolley was hard and narrow. Her arms were pressed against the cold metal of the side-rails. And the noise! So many people calling out or giving instructions.

A voice she recognised pierced the hubbub. A man’s voice, distinctive. It was the doctor who had come down to examine her leg. Her doctor! She could just about make out his shape through the gap in the curtain. He was on the phone, and he was agitated. She followed his words. Of course, Helen could only hear half the conversation.

“No. Sorry, but no. It’s not surgical, there’s no way this lady will need surgical management…”

A pause.

“It doesn’t matter what the protocol says, I’m not accepting her. There’s no compartment syndrome, no bony involvement…”

Another pause.

“Well call my consultant if you like, I’m not taking her onto my list. There’s no indication. She’ll just sit on our ward getting antibiotics, my consultant won’t want to see her, she’s got other complex problems that need medical care… no!”

He hung up. A more junior colleague, a female doctor, joined him. He gestured emphatically in Helen’s direction and said,

“In future please don’t accept referrals like that. I’ve had to turf her back to medics, they started going on about what if she needs plastic surgery or debridement. We can come and give an opinion if her foot goes bad, but we’re not having her on our list. Waste of time.”

He walked away from the station and passed Helen’s bay. He kept his eyes down but Helen followed him with her gaze and made the briefest of eye contact when he glanced in. The doctor smiled weakly. He had no idea that she had heard him. He carried on walking, but Helen called out,

“Ah doctor!” He stopped and stood by the curtain.

“Yes Mrs Thomas?”

“So will you be looking after me? Am I going to your ward?”

“Errr… no. The kind of infection you have is best looked after by the medical team. I’m a surgeon, so I’ve asked that the medical team look after you on their ward.”

“I see. But they said I might need an operation on the wound. It’s very severe.”

“We can always do that later if need be. But you’re better off under the medical doctors to start with.” He moved on, but before he was out of earshot Helen muttered,

“I wouldn’t want to be a waste of time.”

The doctor slowed for an instant, then carried on. Helen had no idea whether he felt bad, embarrassed, or if he just didn’t care.

 

 

We all know that negotiation over the ownership of patients is a reality. Imagine if they could hear the arguments that sometimes take place. That is what I have done here – imagine a sad scenario in which a patient hears ‘her doctor’ doing his best to wash his hands of her. I’m not sure if such accidental indiscretions have occurred in reality; I suspect they have.

Medical diagnosis and early management are not clear-cut exercises, and working which teams should look after patients can take time. Robust conversations take place in which doctors explain why they should, or more commonly should not, take responsibility. If it’s a 50:50 call it can come down to pure assertiveness. Or, sometimes, the heartfelt intervention by a senior nurse who recognises that ‘Someone’s got to look after this poor lady! Sort yourselves out!’

It may be shocking for non-medical readers to hear that patients are not automatically welcomed onto the lists of medical teams. It sounds inhumane. Yet there can be good reasons. The worst thing for a patient is to be admitted under a team that is inexpert in the management of their medical condition. This can lead to delays, avoidable deterioration or even clinical disengagement. It is important to be taken over by the most appropriate team, but determining which team this is can be a struggle.

There are unseemly struggles behind the scenes in many customer-, client- or user-facing organisations. In acute and emergency medicine, where patients are by definition experiencing vulnerability and disempowerment, any sense of rejection is bound to have a very negative effect. So, doctors, next time you feel the need to argue over a referral and start horse-trading over individuals, imagine what impact your words might have on the patient, should they accidentally hear you!

 

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The show goes on

Moving on

 

Moving on is a feature of the trainee doctor’s life, and next week sees another transition point for thousands. I found it both stressful and innervating, and I’m sure the adaptability that being forced to change institution every twelve months is a good thing. Yet the need to leave a familiar environment, trusted colleagues and patients whom one has been caring for, exposes some human challenges unique to medicine.

Ward doctors get to know their patients for relatively short periods of time, sometimes only a day or two, sometimes a month (if they are very ill, or if there are delays in discharge). But there is barely time to warn them that you will not be there come change over day. This can feel like a form of minor deception. On the last day you know that whatever undertakings you make, whatever promises to come back with tests results or other information, it won’t be you who fulfils them. We know that of all the things patients value, continuity is high on the list. Yet the faces they come to know best, those of the F1, F2 and core trainees, disappear at a stroke. Others remain, the registrars and consultants, and they try to ease the transition by saying things like, ‘Change over day today, you’ll be seeing lots of new faces!’ I wonder how patients react, privately, to this shift. Employees everywhere move on, but I can’t think of any other arena where those providing such an emotionally complex service, in a time of great stress (illness), appear to float off with barely a by-your-leave.

If you happen to be on-call the day or night before change over, your own questions about patients may remain unanswered. If you are unlucky with timing you will finish a night shift, clean your teeth and drive off to the next hospital in one seamless marathon. I remember calling in from the atrium of my new hospital during a break in the induction program, to find out what a brain scan had shown in a young man with strange paralysis. I could not get through to anyone. Then I remembered – most of the doctors at the old place were new too. My old registrar might know the answer, but she was undoubtedly running around trying to see all the patients on her own. None of the doctors who had replaced me would know who the hell I was. I was gone.

There may also be a sense of frustrated responsibility. I had a vitally important message to hand over to another team about one of their ward patients. A blood result had come through  – or been noticed – late on the final night indicating that a patient’s kidney failure was due to a rare condition, vasculitis. She had to be referred to a specialist kidney hospital for a biopsy and immunosupression first thing in the morning. But I had to go; in fact I had to leave an hour early to drive to a new county. So I wrote in the notes (underlining the result five times), asked the nurse in charge to grab the medical team as soon as they arrived, and sped to the new hospital. Between induction lectures I tried to contact the team. When I got through the new doctors didn’t even recognise the name of the patient! At last the registrar came to the phone – the one constant at this time of potential chaos. (Barring the consultant of course, but I wasn’t going to call him was I?) The registrar knew what was going on. He had already made the referral.

‘Thank God,’ I sighed. He laughed, and said,

“Hey, don’t worry. We’ll manage. The show goes on!”

 

After that, I worried less about moving on.

 

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