Current controversies

Systems and sense

 

 

The controversy surrounding paediatrician Dr Hadiza Bawa-Garba has got me thinking about the relationship between individuals and systems in healthcare. In this case, it has been suggested that system failures, including under-staffing, contributed to a young patient’s death. So important do those factors appear, many feel she should be allowed to continue practising despite a prior manslaughter judgment against her. How do we decide how much blame resides with an individual doctor, and how much can be attributed to the sub-optimal system? I do not know the answer, but it is a question worth exploring.

I cannot recall a single avoidable death where the ‘system’ (i.e. processes, ways of working in the hospital) was not at some level criticised. This is because I have yet to work in a hospital where safety-netting systems were perfect. From slow or inconsistent IT, to lost correspondence, inadequate hand-over arrangements or over-stretched teams… there is always something in the background that appears to diminish an individual doctor’s ability to make the right diagnosis, or initiate the right treatment, in an acceptable timeframe. That’s why it is rare for investigations into avoidable deaths to conclude that a single person’s act of commission or omission was to blame. Blame, of course, is a word we avoid, though as I explored in a previous article, a sense of personal culpability may be important as a driver of self-improvement.

Thinking back to formative errors I made in my own training, I recall an incident of gentamicin induced renal failure. I prescribed it on a Friday, handed over the job of checking the levels (it is toxic if it builds up in the bloodstream), and went off for the weekend. The patient was given it as prescribed (this was back in the day when dosing was written up regularly, but with the caveat ‘check trough levels first’). But no levels were checked. Her renal function deteriorated, and she ended up on dialysis for a while. Disaster.

The system did not help me. There was no gentamicin prescribing protocol; no system of flagging abnormal kidney results to doctors on call; the handover book was a scrawl – so many ways in which better systems could have helped prevent harm. Yet, that was the environment in which I worked. It was my handwriting on the chart that damaged her kidneys. I learned that if a result is important, you need to chase it, and if something needs doing when you’ve gone home, you have find out who is supposed to do it and make sure they are completely aware. You can’t be passive; you can’t leave it to the system.

Take this example, from a Human Factors in Healthcare document. I have underlined the areas where it was felt the system let the patient down, and put into bold those where an individual made an error.

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A child with a known penicillin allergy was prescribed and administered an intravenous dose of an antibiotic of the penicillin class’

A child was due to have a pacemaker fitted. On pre-admission an allergy to penicillin was recorded. This was noted on both the nursing admission assessment form and the anaesthetic record chart. Prior to operation, the allergy was discussed with the specialist paediatric cardiology registrar, the consultant paediatric anaesthetist, anaesthetic specialist registrar and the cardiology consultant. However, following the procedure the patient’s plan included intravenous and oral penicillin.

How did this happen?

  • Intravenous penicillin is the usual antibiotic used following a pacemaker being fitted. There was no up-to-date protocol on what other antibiotics should be used if a paediatric cardiac patient has a penicillin allergy, which initially caused confusion;
  • There was no clear record of the allergy in the medical notes when the Consultant Cardiologist advised treatment;
  • No system was in place to prevent penicillin prescription when a known allergy was recorded.
  • A number of appropriate checks were not followed prior to administration of the antibiotics.
  • During independent checks, neither nurse checked allergy status, and both were under pressure to complete tasks. The patient’s allergy band was on the same side as their identity band, both of which were covered with a bandage for an intravenous drip.

_

Imagine the child had received penicillin and died from anaphylaxis. Would it seem reasonable for any of the individuals involved in the actions highlighted in bold to have been blamed, censured, or worse, accused of manslaughter?

The cardiologist put penicillin in the post-op plan, despite having been told about the allergy. Neither nurse checked for allergy, not thinking to peel back the obscuring bandage. Somebody put the bandage on without moving the allergy bans. All were at fault. But, an electronic prescribing package that automatically pulled the allergy from the patient’s record and blocked any doctor from writing up a penicillin-related compound would have rescued the situation. Can the absence of such a system be blamed for an error that results in death? Would its lack be used, in court let us say, to extenuate the error medical staff? Or should staff be judged in the context of the environment in which they find themselves?

At what point does responsibility for errors cease to be attributable to systems, and start to accumulate around individuals? There is no visible line or threshold. Regulators and courts must determine what was reasonable in the circumstances, and if a doctor meets minimum acceptable standards within Good Medical Practise. For the trainee, it is important to understand that all systems are imperfect, and to develop a sense for when to drive management forward, well before the backstops provided by the ‘system’ throw up a red flag.

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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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Observations on the Emergency Care and Treatment Plan

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

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

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

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

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

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

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

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

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

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

 *

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

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

 

Thoughts of a Lord on the eve of a debate

— Announcement —

Welcome to the blog. Here you will find 100 posts exploring aspects of medicine that have preoccupied or challenged me during training and the first 3 or 4 years as a consultant.

I began to write in August 2012, and managed, against expectation, to produce one post a week for two years. I am now giving it a rest, although I’m sure I will come back to the blog when an observation, scandal or ethical dilemma grabs my attention.

I have collected and published these posts in three volumes, the most recent of which is ‘A Face to Meet the Faces’.

Thank-you for your support. I’ll announce any new posts via Twitter as usual.

 

 

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Forgive the impersonation.

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I’m not a true expert on assisted dying, but have become something of one with all the petitions, emails, personal representations and evidence summaries (collated by my excellent assistant). Recognising that care and compassion are abundant on both sides of the argument, I began to focus on the objective. Harrowing and personal stories are persuasive, and cannot be dismissed, but it is my duty to look up from individual tragedies and forward to the future where harms may arise. But what harms?

 

I am persuaded that there has been creep in the most liberal nations, where euthanasia is practised. I am persuaded that life may have become a little cheaper, and, dare I say it, a little less sacred in those places. But Falconer’s Bill isn’t about euthanasia, it is about patients taking fatal doses at the time of their own choosing. Doctors will do nothing more than facilitate the getting of the drugs, and sometimes the administration. Am I being naive here?

 

Can I be sure that the system will protect those who might not have requested AD if were not for the vulnerability of their position or the nudges and comments initiated by relatives, carers or unscrupulous others? Will there be a risk of subtle coercion over many weeks or months that ultimately drives a patient to request AD? I am not persuaded of that. A doctor involved in the assessment should question hard a patient, or a family unit, when a request seems to come out of the blue or appears inconsistent with prior impressions. Can I be sure that not one single such instance will occur? I cannot. There are no certainties in law, medicine or human behaviour.

 

And what of those doctors? They will be involved early on, when assessing a patient’s ‘settled intention to end his or her own life’, and when looking around the patient to ensure that there has been no familial coercion. Can we trust them? They are not perfect. Some are downright poor. But I do not see poor doctors leading to a lack of safety here; more likely, the poor doctor would fail to allow a patient the opportunity to discuss AD at all.

 

Will patients feel ‘guilted’ into choosing AD? I know of no evidence that they have done elsewhere, although I did read something to suggest that depressed patients are more likely to choose it. Depression, they say, is treatable. I might counter that depression is not surprising, and is not likely to be reversed in this context. I don’t mind that part of a patient’s motivation might be the fear of becoming or continuing to be a burden…that is part of the personal burden of illness, in my view. But the drive to have an assisted death has to come from the patient.

 

I seem to be talking myself out a Yes vote.

 

But wait. We must move forward. The supreme court has told us as much – admittedly in relation a different group of patients, those without terminal illness who actually require the physical assistance of a doctor or carer to do the deed. Nevertheless, we cannot stay where we are. The line, which has hitherto stopped doctors facilitating death in any circumstances, must be crossed at some point. If not this year then next, or the year after that. That much is clear to me. I am not comfortable with it, I would expect no-one to be comfortable with it, but to resist the move to patients being assisted in the organisation of their own life and death seems over-dogmatic to me.

 

Unencumbered by religious faith, I do not have to factor in the intentions or opinions of a overseeing creator. I feel for those of my colleagues who do, but am interested by the intervention of a retired archbishop. The ranks of the religious are by no means aligned. I am far more alarmed by the ranks of palliative care specialists. These doctors have dedicated their professional lives to the care of the dying, and their opinion must be respected. I don’t know any who support AD. Perhaps some do but are nervous about being seen to support something that seems contrary to the prime purpose of providing comfort and quality in life. But I am a little frustrated too, because I don’t see why palliative care cannot segue into AD if comfort cannot be provided. Why should a patient lose the option of AD just because they submitted themselves to the care of a group of doctors who are strongly opposed? I do not like the thought that a patient in a hospice might be barred from seeking AD, or might have be discharged in order to pursue the option away from the disapproving eyes of his or her palliative care team.

 

So it seems I’m in favour after all. But I will listen to the arguments, even though I have probably heard them before. There will be emotion, which must be allowed to touch one, but I will try to maintain the objectivity of the law maker. There will be thinly disguised religious motivation, which I must try to respect because I respect the people who are speaking. And there will be reassurances, that the slippery slope is illusory and the safeguards are adequate. I will vote in favour…but, on the threshold, I cannot guarantee that something will not hold me back. A sudden chill that I am belittling the value of existence and shattering the previously inviolate principle that human life should not be taken. I cannot guarantee that as I act to vote in favour, glimpses of other lives, wasted due to mankind’s failure to recognise life’s value – in battle, in innocent planes over war zones, on Middle Eastern beaches – will hold me fast and change my intention. I just can’t say. A vote like this is, for all the evidence one hears, is an instinctive affair.

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Notes on a judgment

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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.’

and,

‘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.’

thus,

‘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.’

and,

‘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.

 

 

oOo

 

* 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.

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Singular histories, common needs: replacing the LCP

broken-bridge

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The Leadership Alliance for the Care of Dying People published its interim report just as I was beginning to wonder what had become of the urgent changes set into motion by Baroness Neuberger’s report on the Liverpool Care Pathway. Those of us outside the specialist palliative care community but deeply involved in the care of the dying (ie. nurses, hospital specialists and general practitioners) are not privy to the day to day developments behind the scenes. Since the LCP was withdrawn, its commendable intentions besmirched by association with CQUIN payments and isolated poor practice, patients have continued to die. We presume, we hope, that they have died in as much comfort, and with as much dignity, that health care professionals were able to provide.

The conclusions of the Leadership Alliance have been anticipated to some degree. Prominent critics of the LCP fear that the current exercise is no more than ‘rebranding’. Professor Pullicino, whose presentation to the Medical Ethics Alliance in large part set the ball rolling, has been quoted as saying,

“The fact is that little seems to have changed, including the use of syringe drivers, anticipatory prescribing, use of sedation and narcotics and limitation of hydration and nutrition by a ‘best interest’ team decision.” The Neuberger report accepted that these aspects of care had an important place in palliation, so it seems extremely unlikely that the Professor’s suspicious attitude to them will percolate into the Leadership Alliance’s proposals.

Not missed

Do  I miss the LCP? Strangely, for one who regretted its withdrawal, the answer is no. I realised this a few months after the Neuberger report was published (by which time many trusts had stopped using it), and had to ask myself why. My conclusion  – effective protocols make work* for those who follow them, and when any protocol or treatment pathway is withdrawn, other business rapidly fills the space. The LCP committed clinicians to a degree of engagement with the needs of dying patients, and its sudden absence (without a replacement) may allow those caring for patients to move along more swiftly to the next. I have no evidence that care for the dying has suffered since the LCP was withdrawn, but know that I, personally, am spending less time on the little things. This may be for want of structure. The LCP, with its spaces for daily nursing and medical entries, with its reminders to check those aspects of bodily comfort that might otherwise be overlooked, served to draw us into the dying patient’s passive sphere. The pathway imposed on us, but ensured that we dedicated the time that was required to maximise comfort. In its absence we have the fundamental aspects of palliative care (which are not complicated, after all) to guide us, and in many Trusts some bridging guidance or condition specific approaches have been developed, but we do not have an instantly recognisable, well rehearsed approach. There is much to be said for the common language and mutual understanding that the LCP generated between doctors and nurses.

The semantics of protocols and pathways

What was the LCP? According to Neuberger,

 ‘The LCP provides alerts, guidance and a structured, single record for doctors, nurses and multidisciplinary teams that are inexpert in palliative care.’

However, it seemed to become more than that – a deterministic force,

‘…the LCP is being perceived by some of its users – doctors and nurses – not as a document, nor as a guideline, but most frequently as a set of instructions and prescriptions, that is to say a protocol.’

The authors then explore the concept of the pathway, differentiating between various different forms of guidance. As someone who uses all of these types of document on a weekly basis, I nevertheless find the following paragraph quite a handful –

‘To remove this lack of clarity and the unintended consequences that appear to follow from it, the Review panel recommends that NHS England and NICE should review urgently the terms they are using to define clinical ‘pathways’, distinguishing them from protocols, standard operating procedures, guidelines, guidance, and best practice models. These must be intelligible to all, from clinicians to members of the public.’

The principles on which new guidelines will be based  emphasise the importance of asking, listening and tailoring care to the expressed wishes of the patient and family. But we will need some sort of ‘protocol’ to encompass those principles and remind us, if not compel us, to apply them. Is it possible to do that without paper, a checklist…a booklet? The Leadership Alliance states in its interim document that it will be producing a ‘prompt sheet’. It is accepted that we, the doctors and nurses at the front line, need to be reminded.

The problem of inexorability

What differentiates a pathway from a protocol? To me, pathway suggests a sense of the inexorable, and it is that, in this context, which causes concern. For once patients had been started on a pathway,

‘Many patients and their families felt as though they have lost control over what was happening to them.’

The following extract from the report touches on this sense of inevitability,

‘A repeated observation by families was that starting the LCP seemed to mean that proper clinical assessments of the need for medication ceased, instead of occurring every four hours as recommended in the LCP document; the LCP was then experienced as if it were a protocol, even a “tick-box” exercise, through which the next step was to stop food and fluids and give continuous infusions of strong opioids and sedatives without justification or explanation.’

It is the lack of transparency or sharing of thoughts that causes most concern. We can, I think, be reasonably sure that doctors and nurses were thinking, but perhaps, with a sense of justification permitted by the acceptance of inevitable decline on the pathway, health care workers did not see the need to explain and discuss. The LCP foresaw such developments and accounted for them, but it may have short-circuited the need to share and re-confirm, with families, that they were comfortable with developments. Neuberger highlights the shock felt by families when patients were found unable to converse just a few hours after appearing alert,

                ‘There have been too many people coming forward to the Review panel to state that they left their loved one in a calm and peaceful state, able to communicate, for a short time, or with a doctor or nurse for a check-up, only to return to find a syringe driver had been put in place and their loved one was never able to communicate again. …the Review panel felt that patients, their relatives and carers should be told the reasons for “step changes” in treatment, and be given the opportunity to contribute to a discussion about appropriate care.’

To nurses and doctors, such changes are part of dying, and not necessarily a reason to make a new telephone call; to the family, such changes are full of meaning.

Finding the singular in the ubiquitous

Which brings me to the concept of individualised care. This, to me, is the paradox that must somehow be overcome by those responsible for replacing the LCP. How do we ensure that common management principles are universally and strictly applied by variously trained doctors and nurses, while maintaining the sense of bespoke care?

The more I consider the demise of the LCP, the more I focus on the possibility that we, the medical profession, misjudged the significance of death’s sanctity in the eyes of our patients’ relatives. I do not refer to religious sanctity, but the oneness, the singularity of each life as it slips into death. I am increasingly convinced that the normal expectations of consensus between doctor and patient (or doctor and relative) do not apply in end of life scenarios. Perhaps my experience is skewed to those rapidly progressive conditions and unexpected deteriorations that occur on general medical wards, but there is something uncomfortable about meeting this situation with a prepared approach that one can extract from the filing cabinet behind the nurses’ station. The impression it gives is, ‘Oh yes, we have a process for that.’

However sensitive the clinician, however skillful their communication, any sense of individualisation is likely to be negated by the perception that common rules are being applied. Some relatives say as much, for example, ‘I’m sure you see this all the time doctor…but I haven’t lost a parent before.’

We, as clinicians, have indeed seen it all before, and even those of us who have been bereaved will be in ‘work mode’, where death is commonplace and everything has its place in a ward filled with illness and anxiety.

Every death is unique. Few would disagree with that. But doctors and nurses, who have observed death many times, will say that there is much in common between them. What makes each death unique is the life leading up to it. That life is initially invisible to medical staff. For families, death is the culmination of a rich experience. For those providing care, who can only guess at the depth of their patient’s history, death is the end result of disease. As layers of personality and snippets of history are added to the initial sketch, the true meaning of this death becomes clear. This difference of perception – the rich, full person as perceived by the family on the one hand, the unremarkable process of dying common to all terminal patients as perceived by medical staff on the other, may explain the problems that have arisen around the LCP.

The onward flow

The flattening effects of such philosophical and emotional influences are further exaggerated by the pressured atmosphere of a busy ward; an inadequate relatives’ room, bleeps that have not been deactivated during preparation for a crucial conversation, noisy vacuum cleaners. The quotidian, unremarkable nature of death is impressed on families, and the Neuberger report included examples to reinforce this picture of ‘business as usual’, such as,

‘Privacy screens were normally open so that all visitors, cleaning staff and the other patients could witness my uncle’s distress and imminent demise.’

or,

‘Catering staff asking quite loudly in the middle of the ward to other patients what food and drink they would like is completely inappropriate when my uncle was under the LCP.’

The challenge of remaining sensitive to the unique aspects of each patient, their history, their preferences, their relatives’ expectations, while ensuring that needs common to all dying people are not overlooked, remains huge. I don’t envy the Leadership Alliance in the task of preserving all that was good in the LCP while designing something fundamentally different.

oOo

* I explored the idea of LCP as ‘work’ in a previous post ‘An opaque code: the Liverpool Care Pathway and a gap in perception’

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He had sat through the starter and the main course, each morsel sticking in his dry gullet. Opportunities had come and gone, but he had failed to take them, paralysed by cowardice. Nevertheless, his mind was made up and nothing was going to change his course. His mother seemed to sense that something was wrong; the conversation faltered, he declined to have his wine glass refilled.

“What’s wrong love?”

“I’m giving up medicine.”

oOo

A month earlier.

He parked his car and turned off the radio. — ‘…doctors will be criminalised if found guilty of wilful negligence…’ — was the sentence echoing in his mind as he entered the hospital through a side door. He was on-call today, but he hoped to see some of his own patients before things began to heat up. His first patient had been diagnosed with inoperable lung cancer, and their relatives were on the ward waiting to talk to him. David took them into a private room. As he closed the door behind them the patient’s daughter pre-empted him, asking,

“Who are you?”

“I’m David Clark, the SHO.”

She opened a spiral bound note book and began to take notes.

“…before you go on doctor, can you tell me when you found the lump?”

“Well…soon after he came in, when he had the scan…”

“Wasn’t it on the x-ray he had on the day he came to casualty?”

“Well yes, but we, the doctors looking after him them, were concentrating on the infection, but now a scan proved it…”

“That was two weeks ago. I don’t understand why there has been a delay.”

David controlled himself. His plan, the careful steps he rehearsed in order to take the family along an explanatory path of diagnosis, treatment options, arrangements, support…had been blown to bits. Flustered, he continued. Everything was being written down. A phrase from the cop shows rattled in his head as tried to focus on the words, ‘…will be used against you in a court of law…

The day got busier. While he was inserting a urinary catheter he was fast bleeped to another ward. He couldn’t move, committed to the task that he had begun. He hurried it, didn’t do it quite as carefully as he normally would, anxious to leave the patient and rush to the emergency. When he got to the other ward a charge nurse informed him that he had no choice but to fill an incident form. Only the most junior member of the team had responded to the urgent call, and she hadn’t been able to deal with the emergency.

“But I was tied up, I couldn’t come…’

“I know doctor. But we have to do these forms. Otherwise nothing changes, does it…?’

He imagined his name in the text, the focus of culpability. In the Acute Medical Unit ward he received a call; the bed manager had been trying to find him. There was a patient on an outlying ward under his team’s care who had not been reviewed for four days. Although David was mired in emergency admissions by now (enjoying the rapid throughput of fresh cases, stimulated by the need to make fast decisions, arrange investigations and take responsibility for the treatment plans), he dragged himself away to visit the lost patient. She was very elderly, evidently succumbing to pneumonia on a background of heart disease. In fact the admitting team had done a very thorough job. They had spoken to the family, discussed resuscitation, introduced the idea of palliative care, but then…nothing. For four days. No doctors. The odd on-call visit to prescribe fluids, but nothing substantive. It shouldn’t happen, but it can and it does. And now her son was here, visibly upset. David introduced himself. The son retorted,

“I want an explanation!”

“I’m sorry, there must have been a mix up, and then over the weekend…”

“I don’t care. No-one has seen her, she’s been ignored. Who is this?” He pointed to the consultant’s name written in blue marker on the white sign above the bed, “Is he the consultant?”

“She. Yes she is. But your mother has only just come under her care.”

“No she hasn’t, that name has been up there every day. But you didn’t see her on Monday or Tuesday. It’s neglect. What chance she did have has been lost.”

“The nurses tell me she has been comfortable.”

“Yes, she has. But…

David entered the final hours of his difficult day. He made many accurate diagnoses and many good decisions. The consultant seemed happy with his clerking but David was down. He kept thinking back to the old lady’s son, his sharp words. ‘Wilful…’ ‘Ignored…’ ‘Neglected…’ David’s usual spark had been extinguished. His shift was over. As he walked into the doctors’ room to pick up his coat the bleep went off one last time. He called the number.

“Dr Clark. Hi, it’s Mary on Chestnut ward. Mr Threlfall, the man we put out a fast bleep for earlier, he’s died. No, it was expected, your registrar came to see him and made him not for resuscitation. It’s just, because of that incident form earlier, I’m going to send the notes on to the morbidity and mortality meeting for review. As a formality, you know.’

As he closed the door of the office behind him a colleague ran past him in the corridor; breathlessly he shouted,

“Crash call. Some guy who had a catheter inserted this morning, on Warfarin, he’s bleeding out…”

David opened his car door, sat heavily in the seat, and turned on the radio. —‘Police have confirmed a second criminal investigation into a potentially avoidable death in Mid Staffordshire, five years after…’— He turned it off, put his palms on the steering wheel and his forehead on the backs of his hands, and muttered, “I can’t do this anymore.”

oOo

David sat in his consultant’s office. She had locked the door and asked that they not to be disturbed. She had heard about his decision, and started by asking him to hear her out. Then she explored what it was that had made up his mind. He described his shift from hell. She said,

“I’ll tell you what I think. We’ve got to help you adapt to these…stresses. The scrutiny, the incident reporting…”

“You mean just ignore it?”

“In a way, yes. They should not dictate how you function as a doctor. Because they are more visible – after Mid Staffs, after the Francis Report – and because they have imposed themselves on you, you have come to react to them rather than the instincts that drew you into this vocation in the first place. They are important, yes, they are there to protect patients, yes, but from those doctors who might be harmful. You are not one of those doctors. You are good. You should be able to function without bring fearful of running into these electric fences and getting hurt all the time. From what I’ve seen of the way you practice medicine, you will find a path goes nowhere near the edges of reasonable, sensible practice.”

“Yet I seem to have run into those fences time and again. I described it to my girlfriend as living in a continuous rainstorm, where each raindrop is a new patient and a potential clinical incident or mistake that I must protect myself from. Usually I can, using my knowledge and experience, or luck, but sometimes one of those raindrop gets through, and explodes. And I never know which one it’s going to be…”

“What happens to patients isn’t always down to you or your decisions. Some get sick despite everything. You can’t necessarily stop that, so you can’t take the blame. Looking back, did you actually do anything wrong during that day on call?”

“I felt like I did. Incident forms, threats of ‘wilful negligence’! And the catheter. That was my fault.”

“Didn’t you hear? He had a bladder tumour, that’s why he bled! Forget that. And ‘wilful negligence’…please don’t be scared by that term. The relative who used it wasn’t criticising you, he didn’t know who you were. He was frustrated with the situation. Wouldn’t you be? That term, whatever it means, wasn’t designed to be applied to isolated mistakes.”

“But she was neglected.”

“Yes, by our system. And we’ve tried to close that gap. But not by you. You were never in danger. Did you really think you could go to jail? Really?”

“No. Yes. I don’t know. I just kept hearing it…”

“I know. And the incident form…well, they are important, and are used to alert us – the doctors who will be working here for years! – about what needs to be fixed. That wasn’t personal either.”

“I appreciate what you’re saying, I really do. But I can’t work in this atmosphere of…negativity.”

“But it’s just that. An atmosphere. We have to learn to breathe it without taking it personally, without a sense of suffocation..”

“So it’s my fault – this crisis. I’ve got it out of perspective?”

“A bit. That’s why we’re talking. I want to help you understand how a good doctor must accept that they will be subject to what seems like criticism now and again. You seem to be aware of your limitations. In fact you may be too aware, because you’ve grown nervous of them. The warnings and safety nets that have become so much more visible recently are not there to punish you. If you, as one of the great majority of trainee doctors who are good, intelligent and conscientious, are picked out and quoted in some incident form, or referred to anonymously in a mortality meeting, it’s more likely to be a reflection of how stressed the service is, or how fallible a particular system is. It’s not a judgment on you.”

“But if I am a good doctor why am I being reminded about these systems all the time? Threatened by them.”

“There is a temptation to use them as levers, to get you to see patients more urgently than you, as the doctor, might feel is appropriate. Remember, you are the doctor, your opinion is valuable .If you are asked to see someone who is deteriorating, you have the right, by virtue of your experience and understanding of clinical priorities, to decide how soon they should be seen. But if somebody else thinks they should be seen sooner, and they are able to wield a stick, it’s natural for them to do this to motivate you to hurry up. They want their patient seen first – that’s natural. But in doing so they ensure that you are driven by a negative motivation rather a positive one. You fear the situation rather than embrace it. And look where it has brought you.”

“So I just say no, sorry, I’ll come when I want to.”

“If you are juggling what appear to be equally important priorities, yes. But you must explain why, help the person you are talking to understand and, if possible, agree. And you must follow through, see that patient, hold your course, finish each task that you begin, and leave the ward confident that you have dealt with the problem in hand…”

“And when I get called away to see an even sicker patient…”

“Ask, build a picture, make your own mind up. Things don’t happen that fast. The sicker patient will have been deteriorating all night, they can usually wait another ten minutes. If they are arresting you will find out, there will be a crash call. It’s all about accommodating the continuous stream of emergencies, catching the raindrops, without being caught up and carried away in the flow. If you do you will become disorientated. You are the one who needs to keep calm, maintain perspective. It’s you they’re looking to for reassurance. Remember that David.”

“I hadn’t thought about it like that. I’ve just felt…so junior…all the time.”

“Junior in some ways, but senior in so many others…at three in the morning you are the most accessible doctor on the wards. First contact. It’s a massive responsibility. With that responsibility comes respect.”

“Really. I don’t feel it.”

“It comes.”

“If there was respect they wouldn’t have done an incident form.”

“No. You’re taking it the wrong way, personally. The incident form is irrelevant. It wasn’t a judgment on you, it was an observation that when a fast bleep was put out the doctor couldn’t come because he was doing something else. So what? If you can accept that now and again, purely by virtue of the fact that you see so many patients, you are bound to be involved in a complaint or an incident form, you will be able to work naturally, learn, and progress. If you can accept that you work within a network of continuous feedback, but without having your outlook obscured by it, you will achieve whatever you want to achieve.”

“You make it sound almost cosy. It isn’t. In the middle of the night I get shouted at if I don’t come. And relatives write down what I’m saying as though everything is a statement.”

“Well…so might you when you have a relative in hospital. Are you coming back to work next week?”

“ I haven’t decided.”

“That’s OK, take your time.”

______

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The eyes and the ears: why Adam blew the whistle

Previously I wrote a dialogue between two junior doctors. They discussed why Michael would not report, to some higher authority, the dangerous incompetence of a consultant. In this second dialogue, Adam explains to his friend why he phoned the GMC to report dangerous staffing levels. This dialogue seeks to illustrate why a doctor might feel compelled to act, rather than just watch, shake their head and move on.

This is imaginary, obviously. It is intended to describe the thoughts that a whistle blower might have.

Adam and his friend sit in a beer garden. Adam occasionally looks over his shoulder to check who has taken the adjacent table.

“Was it you?” asks Adam’s friend.

“What?”

“Who called the GMC.”

“What did you hear?”

“That someone blew the whistle on A and E.”

“What else did you hear?”

“That it was about staffing levels, lack of support…it was you wasn’t it?”

“Why do you think it was me?”

“Because you’ve been going on about it for ages.”

“That’s the point I guess. I wasn’t seeing any changes at all. I was out of ideas.”

“So did you actually complain first, officially…through proper channels?”

“I told the clinical lead that I thought we were too thin on the ground. Several times.”

“And what did she say?”

“That it ‘will get better’. That ‘when the deanery send us more juniors we’ll be fine’. Mañana, mañana.”

“Did you have examples, of poor staffing leading to bad outcomes?”

“How can you get that evidence? We’re working on the ground, struggling, we work our arses off to keep the ship afloat, some people die, most don’t, how do I know if any particular death is directly related to not enough staff? How do I know if our department has got more deaths or delayed diagnoses that average? I don’t have that overview.”

“So how can you justify blowing the whistle? You don’t know that the department was actually under-performing.”

“If you follow that line of reasoning, no-one would ever stand up and say anything, they would have no confidence in their own opinion. ‘I’m just a cog in a machine, I’m not driving the machine’. To justify NOT saying anything you have to have complete faith in the driver. Do I have faith in the driver? I don’t know, I don’t know the people who run the hospital . All I know is that sometimes it’s hell in that department and patients are falling off their chairs in the waiting room.”

“And despite not knowing, you made the call. Where did you develop that confidence in yourself?”

“It’s not confidence. It didn’t come easy. I waited for months and months before making that phone call. Nearly a year in fact. But nothing was changing.”

“It has now.”

“I know.”

“You should feel proud.”

“I don’t. I just feel sick when I walk through A and E. At least staff move through it so quickly the current set of juniors don’t recognize me as the troublemaker. The consultants do. But a few have told me that they are pleased I did it.”

“Weren’t they embarrassed?”

“No, I don’t think so. They thought the same as me. When someone actually does it…does something positive, everyone suddenly says ‘Yeah, I agree, it’s unacceptable…’. Like the emperor’s new clothes, everyone pretends it’s fine, they can manage, then someone pipes up and the truth becomes clear to all, undeniable. Weird psychology.”

“But why did it take your call? The Trust knew about the situation, the department was aware…not just from your comments…but it took the fear of a GMC investigation to do anything.”

“I honestly don’t know.”

“Has anyone from senior management spoken to you?”

“Yep.”

“And…?”

“It was all very reasonable, understanding, respectful in fact.”

“Fake?”

“Actually no. We got into a good discussion. He made me feel relaxed, and we went into it in some detail.”

“Such as?”

“The bigger picture. He allowed me to push him…to draw him out…to reveal HIS thoughts about whistleblowing. It wasn’t the greatest example of whisteblowing in history was it, really, more of an alert I think…so I don’t think he minded talking about it. So we got into the bigger picture. He encouraged me to think about scale, to think about the hospital as a unit, providing care to all of its patients and to the whole community. Elective and emergency. Babies, kids…not just the sort of patient I was seeing. Those in charge have to decide where to put the resources, where to place the staff…”

“So only they have the overview, and the knowledge…”

“Perhaps, but it went further. I said yeah, you have to make hard decisions, to ration basically, but you in turn are being rationed, by the government, who have demanded that you save x million this year as a share of the £20 billion of efficiency savings. He liked that.”

“He didn’t really agree to pass the buck onto the government did he?”

“Not as such. But perhaps he should have. I might have sympathised with him.”

“You can take the bigger picture further you know Adam.”

“How?”

“To society as a whole. Why does the government demand we save £20 billion?”

“Because the economy is screwed. Austerity.”

“Yes, that’s the environment we live in. But within that environment the government has decided to squeeze the health service because it has a duty to maintain other parts of the state at the same time. Defence, social security, prisons…so in their eyes, the bigger picture demands that Trusts feel the pain. That’s the price of austerity, of long term economic stability. We don’t have that overview, the really big overview.”

“You really believe that? No wonder you didn’t make that call. You’ve intellectualised it to death.”

“Perhaps.”

“I said I sympathized with the big picture, but ultimately it doesn’t cut it. Because it’s not our business to care about the bigger picture, don’t you see? Resources are be sent down according to the best judgements or intentions of our political masters, or moved around the Trust by our senior managers, but we must concern ourselves with what the effect of those decisions is at ground level.”

“Humour me a minute Adam, I’m not criticising you…but why whinge about those decisions? We live in the big picture. We are citizens in a democracy, we, as a society, voted for austerity and hardship. We ARE cogs. That’s the state we’re in, we should just do our best within it. ”

“It doesn’t matter. We, as doctors, work in a small world, the hospital…and we are there to make patients better. We are the ones with the eyes and the ears to tell the ones who move those resources around that their decisions are proving destructive. We are the ones who must tell them if minimum acceptable standards are not being maintained. Who else is going to spot that? If not us, who?”

“But doesn’t everyone think that their little domain is under resourced, straining to maintain minimum standards? We can’t have all of them ringing the GMC helpline.”

“I agree. And that’s why it took me a year. I challenged myself over and over again, told myself it was just me, just a bad run of shifts, that my seniors had recognised the problem and were dealing with it…but nothing happened! So I did it. I reassured myself that it was up to me to tell them that here, in this case, the balance wasn’t right.”

“Eyes and ears.”

“Yep. That’s what Francis said.”

“And mouths too.”

 

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Hazard in context: the psychology of medical continuity

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Continuity of care in hospital is a hot topic. It is well recognised that reductions in the hours worked by junior doctors have resulted in a fracturing of the traditional team structure and more frequent handovers between staff as they come off shorter shifts. The Royal College of Physicians published a survey on the subject in February 2012, their press release saying,

‘…over a quarter (28%) of consultant physicians surveyed rate their hospital’s ability to deliver continuity of care as poor or very poor. In addition, over a quarter (27%) believe that their hospital is poor or very poor at delivering stable medical teams for patient care and education.’

Althought improved safety on the wards was a driver for change, a document published by the Royal College of Surgeons, ‘Do reduced doctors’ working hours create better safety for patients? – assessing the evidence’, challenged the assumption that working to the European Working Time Directive (48 rather than 56) led to greater alertness and fewer mistakes. The author Matthew Worral wrote,

‘There is a much greater evidence base to suggest the full-shift system being brought in increases patient harm through greater handovers and stratification of hospital staff. The potential for important information to be missed and inability to access senior expertise at key times are a greater problem for patients.’

Accompanying the move from long on-call periods to shifts has been a reconfiguration of the way patients are assigned to teams. In a soon to be published book ‘The Changing Role of Doctors’ (Radcliffe Health, May 2013), the main strength of the ‘old way’ is neatly described;

‘This firm structure, with the associated working pattern, meant there was a high level of understanding of one another’s strengths, weaknesses, training needs and personality. When this medical team was working at its best, all members of staff felt supported and there was a genuine sense of camaraderie and team spirit.’

and,

Continuity of patient care was of a very high level. Most patients were clerked in by a member of a firm (usually the most junior doctor) and then remained under the same team of doctors for the duration of the stay, regardless of where the available beds were.’

 

This contrasts with the new ‘ward based’ model, where,

‘…the junior doctor and consultant who first admit a patient will usually pass over the responsibility of care for the patient to another team as soon as the patient moves to an inpatient ward.’

 

The ward based model has significant strengths, not the least of which is that patients are directed to teams with expertise in their particular disease, rather than remaining with the ‘random’ team who happened to be on-call on the day they were admitted. Another strength is that work intensity remains constant, rather than fluctuating with the ebb and flow of admissions either side of an on-call day. A major downside is that whenever the patient moves within the hospital (into a side room because of infective diarrheoa, for example), her or she becomes the responsibility of another team. That team will have to review all that has gone before, check the results, get up to speed, and carry on delivering appropriate care seamlessly. The process of developing a full understanding of the patient’s needs and goals must be repeated. Rapport must be rebuilt. Subtleties may be lost. Errors can be made.

What is at the heart of these errors? System failures, ‘dropped batons’, poor communication…all are likely contributors. Professor Roy Pounder, contemplating the effects of reduced working hours, highlighted these factors in advance of the EWTD changes:

“Seeing a patient once or twice before handing over to the next doctor, who then does the same after a short period, means it is difficult to detect a subtle deterioration in a patient’s condition.”

But I wonder if there is a deeper issue, related to the way doctors understand their patients. The psychology of discontinuity. This needs to be adressed from the point of view of both patients and doctors.

Patient experience: anchorage

A 2002 BMJ paper, ‘Continuity of hospital care: beyond the question of personal contact’ offered some good insights into patient experience, using the following quotes;

“They keep asking the same questions…”

“My file was not present and new doctors were not informed of my situation”

“You always get different orders from new doctors”

“Too many doctors! A second opinion is OK, but the sixth and seventh are quite frustrating…”

These are the more obvious symptoms of discontinuity, but they do not describe fully the sense of vulnerability and frustration that I have sometimes detected. When I see a patient in the emergency department or acute admissions ward, a common question is,

“Are you going to be my doctor now?”

or,

“Will you be coming back to see me again? Will I see you tomorrow?”

I interpret such questions as an appeal for permanence or anchorage in the huge, complex system into which they have been delivered. Patients, it seems to me, are desperate to make a connection that can be relied on. If I know that the patient will come to my ward, I can answer ‘Yes, I’ll be along to see you tomorrow…’ and there may be a visible relaxation in their anxious expression. But if not, I have no choice but to explain, ‘No, it won’t be me who sees you from now on…but one of the other teams, lung specialists…’ Sometimes, if I have spent a good deal of time speaking with them, digging down in important medical or social details, I will add, ’But we will make sure they know all about you…about everything we have discussed…’ If it is a crucial fact I will make a point of telling the new team, but more often than not such hand-over of information will occur on paper, in the notes. This requires a clear handwritten entry, a transparent narrative. It is not uncommon for me to see what has been written by the junior doctor accompanying me only to realise that they have not interpreted the patient’s words in the same way I have. The emphasis is not quite right. So I re-write it, and leave the ward hoping and expecting that whoever receives that patient will see my note and make sense of it. This is an attempt to maintain the chain of continuity.

I wonder if the psychological distress that derives from uncertainty, not knowing if someone in the machine ‘owns’ you, if someone is personally invested in your wellbeing, may be sufficient to undo the benefit of technically correct, well timed medical interventions.

Fast track empathy

How do lack of continuity and the diminished feeling of ownership that follows, influence doctors in a way that jeopardises safety? It may hinge on empathy.

Serious illness requires the application of powerful medical interventions. These bring with them the potential for hazard. Recent debate about ‘zero harm’ culture has crystallised the notion that medicine and its tools can do as much harm as good. To avoid harm staff must be vigilant; they need to keep an eye on the details, spot irregularities, check the blood tests, double check the drug charts, maintain the ‘housekeeping’ (as it is sometimes called), and anticipate complications. These duties should be automatic, but they are done better if the doctor knows the full story. If they have gained a full appreciation of the patient and their background they will understand better the true impact of those potential harms. Risks and harms can appear abstract, but when they are imagined in the context of the whole person they become tangible, transforming from theoretical ‘adverse events’ to personal tragedies. A better understanding of those risks may motivate doctors to work harder in ensuring that each job is done properly. Otherwise they will not be letting down, ‘…the lady in bed 25, acute kidney injury…’, but ‘Mrs Jones…she was hoping to get out in time to attend her grand-daughter’s wedding this weekend…’ Continuity encourages personalisation, personalisation permits the exercise of empathy, and empathy gives our actions relevance.

The challenge for doctors working to shift patterns and caring for patients who arrive to their ward areas on a daily basis, is to learn the practise of empathy in compressed timeframes. This requires active listening, generous emotional investment…energy. But to ensure that connections between patients and doctors are made within the restrictions of the modern hospital environment this has to happen. Otherwise patients will flow through wards without knowing if anyone really ‘owned’ them, or who that person was. And doctors will float from patient to patient without understanding quite how much trust was being put in them.

Disappearing doctors: the limits of medical debate on Twitter

My adoption of Twitter coincided with the Liverpool Care Pathway (LCP) controversy. Naturally, I ‘joined the conversation’. The compact exchanges that followed forced me to examine and re-evaluate my views. The links to press stories (in newspapers I would not normally read) and blogs helped me appreciate how broad the spectrum of opinion is. The cases described in the media are enough to open anyone’s eyes to the risks, but the additional voices on Twitter, their views expressed vehemently at times, reinforced the fact that many more have witnessed, or at least perceived, poor practice. I am happier now to accept that the Pathway has not been used well universally, and perhaps, even though the pathway is intrinsically helpful, it needs to be changed to ensure better application. Nevertheless, because I have seen the benefits of the pathway, I have argued forcefully in its favour.

Engaging in the argument demands patience and moderation, because Tweets can be provocative. Accusations of murder are common, and for some this forms the backbone of their case against the LCP. It soon becomes clear when your interlocutor’s mind cannot be changed. The intensity rises, the argument gets personal. In some cases it becomes clear that the individual in question had a relative who died in difficult circumstances. Trust in the medical profession and the way it manages end of life care was damaged, and when things go wrong so close to home that damage tends to be irrevocable. Whatever the evidence, however overwhelming the number of voices in favour of the pathway, you are unlikely to overturn the misgivings of someone who has vivid memories of a relative dying in hospital.

Nevertheless, it seems reasonable to continue to argue, for Twitter is a place that gives you time to compose your arguments, and time to digest the points made by others. But here the difficulties arise. As doctors we are trained to sympathise and empathise with the relatives. When we talk with a relative of a dying patient we try to inhabit their point of view and understand what they are saying. If they are angry, we absorb that emotion. If they accuse us, or the hospital, or the system, of making mistakes, we do not challenge them; it’s not the right time. These are universal qualities of course, not restricted to doctors, but they are qualities that we have actively developed as part of our vocation.

This is why I find it difficult to maintain opposition to someone whose views are so clearly coloured by personal experience. In trying to overturn their doubts I fear that I am actually belittling their memories of a loved one. So, just as I would never allow myself to become involved in an argument with a patient’s relative on the ward, however much I disagreed with them, I am increasingly reluctant to have arguments with those who wish to banish the pathway. The same applies to those affected by poor care at Mid-Staffordshire, or relatives touched by medical error elsewhere. Doctors seem wary of challenging the validity of HSMR statistitics, knowing perhaps that Tweets may be read by families involved. It seems impolite. Does this reticence lead to a stifled, incomplete debate?

Perhaps doctors are too ready to adopt a ‘customer is always right’ approach. We often find ourselves speaking with people, be they patients or relatives, who challenge us. But we absorb the emotion, the occasional animus, the very rare invective; we step back, give it space, let it mellow with time. You can’t do that on Twitter, it’s about the here and now. And it’s loud. When doctors find themselves losing their rag, raising their voice, making it up as they go along, they tend to remove themselves from the scene. They disappear.

cover to tweet