Legal cases

Understanding Gosport

 

Many doctors and nurses must be trying to understand what went on at War Memorial Hospital, Gosport, especially those who regularly look after patients who are approaching the end of life. Yet, reading the independent report, its magnitude, complexity and ugliness forced me to look away. With its chronological sweep (27 years), terrifying number (‘the lives of over 450 patients were shortened while in the hospital) and interminable bureaucratic delays, it is very hard to comprehend. Easier to turn away, assume that such things could not happen in the ‘modern’ NHS, and spend time considering brighter things.

Yet we must all try to understand. If the report remains in the archives, its conclusions unseen by the general NHS workforce, nothing will have been gained. Hence this essay.

The report depicts a culture in which elderly and frail patients were regarded as burdensome individuals who could ‘talk themselves onto a syringe driver’; it relates how patients were transferred from squeezed medical or surgical wards for ‘rehabilitation’ while clearly at risk of further deterioration. It portrays an environment where expectations for recovery after transfer were so low, anticipatory prescriptions for diamorphine were written at doses sufficient to induce terminal sedation, sometimes without prior medical assessment. The report must undermine the public’s faith in how the NHS treats frail patients. It is likely to become a major piece of evidence in the argument against assisted dying.

This article explores two broad points – personal vs institutional culpability, and the concept of the ‘double effect’ – that came to mind as I read the report.

 

Murder, euthanasia, gross negligence or just bad medicine?

Many observers, including for example the Channel 4 political correspondent Michael Crick, have asked, ‘Why wasn’t this murder?’


 

The report presents a clear association between the use of diamorphine in syringe pumps and death, as illustrated in the graph below. Most patients died in the following 48 hours. The yellow bars show the proportions where opioid was given without clear clinical justification.


On the face of it, this looks like deliberate killing. Sir Liam Donaldson, Chief Medical Officer, in commissioning an interim investigation, invoked the case of Harold Shipman, whose crimes were contemporaneous with events in Gosport;

‘Sir Liam proposed that he should commission for this role Professor Richard Baker, who had carried out a similar audit of deaths attributable to Harold Shipman. Recognising that this “would clearly raise the temperature locally and nationally”, Sir Liam said: “he is very sound and we cannot risk a poorly conducted methodology”.’

Individual criminality was considered by the police (during 3 separate investigations), the Crown Prosecution Service and the coronial jury, but at no point was an arrest made. Dr Barton was interviewed by the police, but presented herself voluntarily. The emails, memos and transcripts show how difficult it was to attribute events on the wards to one person alone. Others were involved, responsibility appeared to be distributed, drawing an uninterrupted between one person’s actions and the patients’ deaths was impossible… the system as a whole required scrutiny. An early, internal opnion provided by a legal researcher in the Hampshire Constabulary illustrates this:

“From what little I know of the circumstances surrounding the case you are dealing with it seems unlikely that manslaughter would be appropriate for the following reasons: 1. The ‘neglect’ was more of a corporate issue than individual to one particular person. 2. The death occurred for a number of reasons and was not the direct and immediate result of ‘neglect’. 3. Were the actions of the hospital staff gross negligence or merely inadvertence?”

In the arena of criminal law where significant doubt means little likelihood of prosecution, the prospect of Dr Barton coming to trial faded.

Even if malign intent along the lines of Shipman could not be established, the shortening of lives must, surely, count as involuntary euthanasia. This potent word was openly considered by the GMC in their Fitness to Practise investigation.

“Routine use of opiate and sedative drug infusions without clear indications for their use would raise concerns that a culture of ‘involuntary euthanasia’ existed on the ward.”

But once again, the organisation as a whole came under scrutiny;

‘There is a possibility that prescriptions of subcutaneous infusions of diamorphine, midazolam and hyoscine may have been routinely written up for many older frail patients admitted to Daedalus and Dryad wards, which nurse then had the discretion to commence. This practice if present was highly inappropriate, hazardous to patients and suggests failure of the senior hospital medical and managerial staff to monitor and supervise care on the ward.’

Culpability is once again seen to lie across the clinical and managerial hierarchy.

At the inquest, which examined the treatment of 10 patients, diamorphine was felt to have significantly contributed to death in 5 cases, and to have been prescribed inappropriately in 3 of the those 5. The overall picture was not one of sustained or pre-meditated killing. The families were dissatisfied by this finding, regarding it as a whitewash. The Coroner’s instinct, illustrated in his words to the jury, was clearly to look at the ‘regime’ as a whole:

On Day 15 of the hearings, the Coroner gave an indication of the type of issues that he wanted the jury to deal with: “I think the areas of concern are the clinical regime at Gosport. I think that has got to be a concern to me and to the jury. The degree of supervision; the fact that it is a GP unit I think may have affected the regime in the hospital – the input of the consultants – I wonder if that was sufficient and whether there was enough involvement? … I think the question of appropriate opioids, whether the dosage was appropriate, whether the medication … played a material part in death … It seems fairly significant, being perhaps the most significant factor for the jury.”

Gross negligence manslaughter was also considered, especially by an external expert;

‘Professor Livesley also confirmed that he would support allegations of assault and “the unlawful killing of ————- by gross negligence” against nursing staff and Dr Barton, and suggested that the police undertake other enquiries to determine if other patients at the hospital had been similarly affected.’

In the end, the only sanction taken against Dr Barton was the GMC finding that her fitness to practise was impaired by serious professional misconduct, based on a Fitness to Practice (FtP) panel’s assessment of her treatment of 12 patients. This came after 5 Interim Orders Committee (IOC) meetings that were intended (after Shipman) to identify at an early stage if a doctor is a present danger to patients. The FtP investigation took place 6 years after it was initially scheduled, at the request of the police:

By accepting the police’s request, the GMC’s investigation effectively stalled. As a result, the hearing which had been set for April 2003 did not take place until June 2009. By the time of the sanctions hearing there had been a ten-year delay which in itself affected the sanction which was imposed. The Panel notes this as one of a number of examples of a process of accountability being undermined by deferring to another organisation.

Dr Barton was found deficient in nearly all areas of medical practise, including assessment of patients, note-keeping, prescribing, failing to consult with colleagues, failing to organise cover when off duty, failure to keep up to date, failings in communication and maintenance of trust… everything. Bad medicine, and nothing more.

 

The ‘double effect’, therapeutic nihilism and distinguishing right from wrong

The Gosport scandal revolves around the ‘double effect’, that is the unintended (we presume) consequence of shortening life while trying to alleviate suffering. The double effect is real, an accepted and acceptable phenomenon. Finding the balance between comfort and respiratory or neurological depression is a skill that requires experience, careful assessment, re-assessment and monitoring.

The [FtP] panel heard evidence from Professor Ford about the ‘double effect’ of drugs given to seriously ill patients to palliate symptoms (that is, to relieve symptoms without treating the cause). The panel highlighted that Professor Ford had said that these types of drugs “may lead to a shortening of life through adverse effects. That is well accepted as being a reasonable and appropriate aspect that may happen when one adequately palliates symptoms.”

Dr Barton openly accepted that the double effect was a ‘price’ that sometimes had to paid for relief;

The panel said that Dr Barton was “clearly aware of the principle of double effect” and when asked about the risk of her prescribing causing “respiratory depression or lowering [a patient’s] conscious level”, the panel highlighted that Dr Barton said: “I accepted that that was a price that we might have to pay in exchange for giving him adequate pain and symptom relief.”

Yet however wayward her practise had become, the senior doctors around her saw no problem. The GMC panel heard the following evidence;

“…at the time in question, the presence of Consultants on Dryad and Daedalus wards was extremely limited. Although the Consultants who gave evidence before the Panel were supportive of you, their evidence tended to suggest that they had not critically examined your prescribing practice, and in many instances had not appreciated your admitted prescribing failures. Had they done so, this should have resulted in appropriate changes being made to your prescribing practice.”

This makes it sound like a failure of supervision. But enhanced supervision occurs when clinical supervisors get a sense of sub-standard performance, or receive comments from others in the clinical area. That did not happen here. Why no sustained alarm bells? Why no correction? Could it be that on cursory review, nothing drastically outside accepted practice was observed? The grey area that is the double effect was too broad, too inviting of subjective interpretation, a zone of shadows where right merged too easily with wrong.

If we put criminality aside (many will not), we must ask whether Dr Barton simply became blinkered in an area of clinical medicine – end of life care – that requires continual self-analysis and reflection? Were the normal corrective influences (feedback from colleagues, mainly nurses in this case, or families) suppressed by a domineering and ‘brusque’ personality? Did her (unconscious) clinical leadership colour the attitude of the whole ward, the whole institution, such that therapeutic nihilism reigned. A patient had only to deviate slightly from an improving trajectory, or become ‘agitated’, to fulfil the profile of a frail, elderly person entering the terminal phase of life, and therefore a candidate for ‘comfort measures’/’TLC’ or any other number of euphemisms mentioned in the report.

Early on, deference was paid to Dr Barton’s position. A document nested in the report – the earliest one – contains an apology to Dr Barton for appearing to question her ‘clinical judgment’.


But isn’t this whole scandal about clinical judgement? A doctor’s incorrect judgement that her patients were dying. Fear of causing offence points to a traditional reverence for the doctor, a hierarchy that exists now and is likely to remain, based on respect for their deeper understanding of pathophysiology and clinical patterns. This hierarchy also assumes finer moral instincts, but there is no basis for this. Nurses have equally good instincts when it comes to sensing what is right and what is wrong. However, most healthcare workers will recall instances where a nurse’s misgivings have been quashed because they do not appear to understand the ‘bigger picture’.

 

Conclusion

There seems little point in forming our own judgement of Dr Barton, given the careful scrutiny afforded by detectives, a coroner, a jury, various professionals and experts, all specifically tasked to devote time and serious mental energy to the tragic issue. Yet judge we will, because we are human. More useful than judging though, is thinking. Could this, or a more subtle version, occur where we work? How sure are we that life is not becoming devalued in pressurised clinical areas where patients with an uncertain prognosis are admitted? Are deaths being counted and reviewed? Is training in end of life care provided? Is eccentric practice being highlighted by those who find it… odd? Are staff empowered to question ‘difficult’ clinicians? I draw a bleak picture, but our NHS is too massive for the assumption that all is well, all the time, to go unchallenged.

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3AM, eternal

3AM picutre

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

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

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

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

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

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

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

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

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

and,

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

then,

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

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

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

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

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

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

Decisions, decisions – informed consent in the 21st century

consent pic

 

Obtaining consent for medical procedures has become more nuanced, and potentially more demanding for doctors. The Supreme Court has decided that information given during the consent process should include any ‘material risk’ that a ‘reasonable person’ in that patient’s situation would want to know about. Quoting from the Nadine Montgomery judgement,

“The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.”

The essential change is that the explanations about complications and benefits should no longer be based on what a ‘responsible body of medical opinion’ would agree is appropriate (AKA the Bolam test), but on what the reasonable patient should be aware of, based on their particular situation and concerns.

It is no longer about being open about complications that occur more than 1 in a 100 or 1 in a 1000 times (traditional and oft quoted thresholds during my training), but about qualitative impact. If the risk of something bad happening is 1 in 100,000, but for that patient the bad thing is likely to have a massive impact (e.g. loss of vision in the right eye when they are already blind in the left), it should be mentioned during the consent process. Doctors should not wait to be asked, but should explore their patients’ sense of what is important to them. But nor should doctors off-load every tiny risk in an indigestible and incomprehensible list, as that is not likely to increase their patients’ general understanding.

So, in the post-Montgomery consent era, doctors must tread a fine line between creating an atmosphere of transparency and a fog of defensive detail.

For most of us the Montgomery ruling hasn’t really changed the way we do consent. Good doctors have always had patient-specific, patient-centred conversations. It does serve to remind us that there is more to consent than dishing out statistics – it is a personalised process that must be tailored to the individual. However, the pressure of time does not allow a luxurious approach to taking consent, and for procedures that are high volume and low risk (for instance endoscopy, my own specialty) the process can be very routine indeed.

 

 

Medical ethics is founded on the concept of informed consent. Autonomy does not exist without it. Physical actions on a patient are ‘battery’ if permission is not given, and permission to be touched can only be given if the patient is given the opportunity to make a reasoned decision. Yet how much reasoning should patients be expected to undertake?

Imagine Mrs X has a lung tumour which is, fortunately, resectable. She meets her surgeon, and he explains that the operation is complex but usually successful. There are risks, not only of death, but of long term debility. The patient has ‘little choice’ – her words. And it is true, she has no choice if she wants to be free of cancer. There are open conversations about the risks, but when they are described her eyes glaze over. The doctor senses this and does not persist in his attempt to describe the potential complications. She has made her mind up to have the surgery – it is obvious. Her informed consent may be somewhat shallow, though the ‘material risks’ associated with the operation are as potentially impactful for her than for any other patient. Yet, for her, the consent conversation is probably appropriate.

Or imagine Mr Y. He has been struggling with back pain for six months, and now the time has come to get seen by a surgeon. Yes, surgery is inevitable, and it will be delicate surgery on the spinal nerves. Paralysis is the big worry – a material risk in anybody’s book. The surgeon is clear about the risk of nerve damage, but also throws in a few more that the patient hadn’t considered. Impotence. For him this would be earth shattering. He can barely bring himself to think about. He wishes, actually, that it hadn’t been mentioned. He has to have the operation before the disc in his back does any more damage to his spinal cord… he has no choice. Mr Y goes home and worries. He fixates on the impotence. But it’s only 1 in a 1000, perhaps even less. On the day of the operation he is asked to sign the consent form. He holds back, pen in hand. He doesn’t want to. He doesn’t want to be impotent. The surgeon looks at him quizzicaly,

“Are you having second thoughts?”

“It’s the impotence. I didn’t realise, at the beginning, that it could happen.”

“I haven’t seen a case personally, it’s very rare. Very. Don’t focus on that.”

“You’ll be careful?”

“Of course.”

He signs. He feels under duress. Not from the surgeon, but from the situation. He needs a procedure, it has risks. The choice he has is – submit to surgery and risk bad things, or do nothing, risk nothing, and be left in pain. This is the reality of informed consent. It is developed in the context of vulnerability.

Last example: Miss Z, a biochemist, well versed in statistics and probability. She has come to hospital with a severe headache and needs a lumbar puncture (LP) to exclude a subarachnoid (brain) haemorrhage. She is in pain, but fully conscious. A young doctor asks her to sign a consent form before starting the procedure. He explains how the LP will be done, and mentions side effects or complications including infection, bleeding, severe or moderate headache, nerve damage, and failure. It is a rather miserable litany of negative possibilities. Miss Z presses the doctor on the precise incidence of these complications; they range from over 5% for headache to 1 in several tens of thousands for permanent nerve injury. Miss Z mulls over the information. The doctor, standing by the bed with a tray of equipment, waits. And waits. Miss Z decides.

“I don’t want it. You’ve put me off.”

The doctor has not faced this situation before. She says,

“But you have to have it, if we want to know whether you have had a bleed.”

“I’ll take my chances. The doctor said in casualty it was pretty unlikely anyway.”

“It might be unlikely, but if it is a bleed, and we don’t identify it, you could have another, larger bleed, in a few days.”

“It sounds like you’re trying to frighten me into it.”

“I’m not, it’s just important you know why we want to do it. It’s important.”

“I’ll take the chance. I don’t want another headache, or nerve damage.”

“Let me call my consultant.”

“Why, so she can talk me into it. Don’t worry, I’ve made my mind up.”

And the doctor nods and walks away. He doesn’t understand. Patients just don’t do that. They always agree. He meets a colleague in the corridor and tells her about it. “Totally got the wrong end of the stick,” he sneers. “I wish I hadn’t told her about the risks. She needs that LP.” His colleague says, wisely, “You think that. But it’s her body. Don’t cut yourself up over it. She’s perfectly capable of making a decision. And she has.”

 

 

The temptation to take a paternalistic or controlling approach is ever-present, for we doctors are usually quite sure about what is right for our patients. But we cannot hold back information out of concern that it will influence our patients’ decisions; it is supposed to influence their decisions, even if some of those decisions do not seem quite right to us. Our job is not to ensure that their decisions are identical to ours, but to ensure that they can make a real decision.

 

Thanks to Dr Katherine McCombe, consultant anaesthetist, whose excellent Grand Round on the subject of consent inspired this post.

You choose: the case of the absent surgeon

youchoosepic

The judgement against Royal Devon & Exeter Foundation Trust in the case of Kathleen Jones appears to have created a precedent that gives patients the right to choose who performs their surgery. KJ needed a spinal operation, and a certain surgeon, Mr C, was recommended to her by the GP. She was referred and assessed, and the decision to operate was made. Hearing that Mr C was on extended leave for several weeks, KJ opted to put off the operation until he was back. A new date for surgery was fixed. KJ attended the hospital and in the hours leading up to the operation said,

“I haven’t seen Mr C yet this morning, I assume he is the doing the operation?”

“Oh no, he is outpatients today, does it make any difference?” replied the nurse.

“Yes it does! I have waited all this time to have my operation undertaken by Mr C.”

She was unhappy, but signed the consent form. The operation did not go well, the lining of the spinal canal was torn, more senior help was called into the operating room, and KJ was left with chronic disability. KJ sued. The judge concluded, having heard expert opinion and after referring to precedent, that although the operation was not performed negligently the patient would in all likelihood not have been injured if Mr C had done the operation. Her right of autonomy had been breached. The informed consent that she had given was undermined – ‘…I consider that her decision to allow the operation to go ahead was not freely taken…’ He awarded £190,000.

The judgement dwells on conversations, correspondence and snippets from GP and hospital notes – in an effort to determine if KJ was told who would operate, or warned that it might not be Mr C – but its conclusion raises important questions about what patients can expect when they submit themselves to the care of the NHS.

As a patient, it is understandable that you would be anxious to know who was going to do your operation and how much experience they had. A solid local or national reputation would be a comfort as you approached the date, and you would go into hospital with a greater sense of confidence. You might check their statistics on-line, or read testimonials. It is only natural to focus one’s hope, the antidote to fear and uncertainty, on an individual. To be told at the last minute that the person you thought was going to do the operation was in clinic, and was unavailable, would immediately undermine that confidence. Not only that, it would make you feel part of the machine, just another case, a unit allocated according to whichever personnel were around that week. But of course by the time you were starved, dressed in a gown, marked with black ink and transferred to a trolley, any sense of power over the situation would have been removed. Looking at the picture that I have just painted, I can see the judge’s point. I can see the patient’s point!

Is there a valid counterargument?

KJ’s operation was elective, so there was a great deal of time for it to be considered and arranged. A lot of time for the patient to hear and read about the surgery and the relative merits of various surgeons. In the elective arena there is opportunity for choice, and space for the exercise of autonomy. We only have to look across to the arena of emergency care to see that choice is limited to particular types of medical care.

A patient with acute chest pain might be aware that there is a particularly good cardiologist in the region, famed for his ability to open arteries in the blink of an eye and save people from severe infarction. The other five cardiologists attached to the hospital are good, but not quite as good. The patient will have no idea whether he is on duty or not. There is a one-in-six rota, so it will be, literally, a ‘roll of the dice’. There is nothing wrong with this situation. All the cardiologists are trained (just as both spinal surgeons in the legal case were trained). So we must accept that in the acute situation autonomy over who one sees or who one is operated on by does not truly exist. Nevertheless, if we have faith in the quality of the hospital, or the NHS in general, we do not mind. We submit ourselves to the health service in our hour of dire need, when the risks are arguably greater than in the elective arena.

If such a lack of autonomy is broadly acceptable in an emergency, why was it not acceptable in the case of KJ? Why was the Trust found guilty?

Comparing emergency and elective patients may not be valid. The judge in this case was clearly swayed by the evidence that KJ had changed her operation date in order to guarantee that Mr C did the surgery. Her consent was founded on the assumption that Mr C would be there. In the judge’s eyes her expectations trumped the internal arrangements made by the Trust which resulted in Mr C being in clinic that day. The principles of patient-centred care clash with the complex necessities of a busy department. The luxury of choice, perhaps never more than a veneer, is stripped away. This is a bleak depiction, and not one with which I would like to characterise the whole NHS, but there is truth in the picture. Patient choice is limited. The big choices – who treats us, where they treat us, when they treat us – are rarely available (unless we pay to go privately). If patients remain under the illusion that choice extends this far, future disappointments, and legal challenges, are bound to occur.

Notes on a judgment

notes on a judgement2

 

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

The judge wrote, in conclusion:

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

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

 

A mandatory discussion

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

 

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

 

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

 

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

 

The diminishment of a symbol

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

 

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

 

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

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

 

Documentation of the discussion

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

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

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

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

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

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

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

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

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.

notes on a judgment

 

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cover to tweet

 

 

 

 

 

 

 

 

Hurricane Katrina and the DNR fallacy

It happened nearly a decade ago, and although the details were there to be read in articles and commentaries, the publication of Sheri Fink’s book ‘Five Days At Memorial‘ has provided an opportunity to explore the tragedy. However, for all the comprehensive detail, the author has been accused by the protagonist with the highest profile, Dr Anna Pou, of creating a fiction. She writes on her website,

                ‘Now several years later Ms Fink has turned her article into a full length novel entitled “Five Days At Memorial [Hospital]” which concludes that scores of patients were euthanized by their doctors. The book is not only an insult to the self sacrificing doctors, nurses and other medical personnel who stayed in harm’s way tending to patients in the most difficult of circumstances, but a disruption to the closure of this tragedy by suggestions to family members of patients who lost their lives that their loved ones were murdered.’

So what did happen? The narrative provided in Fink’s earlier ProPublica article provides a clearer account than that presented in her perhaps over-detailed book, and I recommend it. However, this article is about the decisions that were taken well before the morphine and midazolam injections were given  – namely the policy, hastily agreed in difficult circumstances, of equating DNR status with unsalvageable medical status.

First, a quick overview. Memorial Medical Centre (MMC) attracted attention soon after the waters receded because more people died there (45) than in any other New Orleans hospital. Suspicions grew that something unnatural had occurred. Indeed, one doctor had left during the flood unhappy about a perceived policy of euthanasia; ‘I can’t be part of anything like that.’ (p202) he said to a colleague.

After an investigation by the Medicaid Fraud Control Unit, evidence against Dr Pou was heard before a Grand Jury. It did not indict her on the one count of second-degree murder or the nine counts of ‘conspiracy to commit second degree murder’, and Dr Pou was released. The political atmosphere had become febrile by this time, and the accused doctor (two nurses who had also been accused were offered immunity for their testimony) received a great deal of popular support. Louisiana state’s first term Attorney General, Charles Foti, failed to get re-elected because of his decision to pursue the charges.

 

The Triage

The hospital weathered the storm itself, but the floodwaters that rose following the failure of the levees isolated it entirely. Doctors and management team members met, and soon decided that the ‘sickest, the ones most dependent on life support or mechanical aids, should go out first.’ (p75) Normal clinical service could not be maintained and a senior physician decided that ‘all but the most essential treatments and care should be discontinued.’ (p81) Rationing of available resources (human and material) was therefore underway. Then (p92) Fink describes how, at the earlier meeting, ‘doctors had established an exception to the protocol of prioritizing the sickest patients and those whose lives relied on machines. They had decided that all patients with Do Not Resuscitate orders would be prioritised last for evacuation.’ Fink describes what DNR means, and emphasises that a ‘DNR order meant one thing: a patient whose heartbeat or breathing stopped should not be revived’, and a few lines later explains ‘but the doctor who suggested at the meeting that DNR patient go last had a different understanding… [He] said he thought the law required patients with DNR orders to have a certified terminal or irreversible condition, and at memorial he believed they should go last because they had “least to lose” compared with other patients if calamity struck.’

 

As the evacuation process began, patients were triaged explicitly into 3 categories, ‘3’s’ being those judged to be ‘very ill’, or those with DNR orders. Pieces of paper with 1’s, 2’s and 3’s were taped to patients’ clothing, or written directly onto their gowns with thick black pens (p137). This link takes you to a disturbing picture in Fink’s ProPublica article; DNR is scrawled on an obtunded patient’s gown, along with a ‘3’.

 

The DNR trap

This fallacy, that DNR = end of life, traps and confuses inexperienced nurses and clinicians in everyday clinical practise. Unless a DNR decision is made in the context of imminent death, I usually make a point of saying to the patient, and to ward staff, that ‘this does not affect your treatment, we’re still going to do our best to get you through this illness and home.’ Care must be taken to prevent the impression that DNR means that we will relax, and not bother so much about the details. This danger is encapsulated in a slide taken from a recent presentation I gave on the subject.

dropping a gear

Despite this concern, in the absence of a disaster or a sudden need to ration personnel or equipment, it seems reasonable and achievable to promise that DNR will not affect other aspects of care. The question of limited resources will not come up. Or will it?

There is one scenario where rationing may occur, and that is at the cusp of admission to critical care units. Here, any signal that patients may be near the end of life, or not ‘for everything’, can influence the decision to transfer. It is not uncommon for ward doctors to delay DNR discussions for fear that the signal it gives to those who may be asked to review their patients and decide if organ support has a role. For not everyone can go to ICU. There are not enough beds. This is a form of rationing. Rationing of ICU beds exists, and has been well studied. Although rationing may not be the explicit reason for denying a patient admission, the perennial pressure on beds is very likely (in my view) to raise the bar of anticipated utility in the minds of those who must choose who passes through their unit’s doors.

So perhaps Katrina does offer a lesson to those of us working in functioning health systems. DNR can be used as a label, and if care is not taken its meaning can be amplified into an awful shorthand (at handover for instance) such that it influences the general approach to care . For those of us advocating for more DNR decisions taken earlier after admission, in order to prevent resuscitation of highly frail an comorbid patients by default, the challenge remains – to balance pro-active decision making with protection against lazy thinking. This requires constant vigilance and energetic education.

 

oOo

Note: Double effect

The quintessential point in terms of the guilt, and one that can only be known by the people involved, is whether the primary intention of those involved in injecting patients was to kill or relieve distress. Some would contend that in certain, desperate circumstances, they are one and the same. A patient who is very near the end of life, and who is in pain or severely short of breath, will of course die sooner if morphine is administered. This is the well known double effect.

Note: Reverse triage

There are many reasons why some those triaged to leave last ultimately died. Moving bedbound, morbidly obese or ventilated patients to the helipad proved impossible, for instance. The concept of reverse triage, whereby the sickest go last, is commonly applied in the military setting, or in civilian catastrophes. It is not necessarily controversial. During the years since Katrina, new laws were passed in Louisiana indemnifying doctors against accusations of clinical neglect in the event of patients dying due to this policy.

 

oOo

spokenunspokenPAPER

Deeper water: religion, end of life care and the case for public disclosure.

deeperwater

We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.

 

What patients believe is clearly important. The plight of Mr L, a Muslim man with hypoxic brain injury whom doctors did not wish to resuscitate in the event of deterioration, was brought before the Court of Protection in October 2012 by his family. They insisted that, based on his previous respect for Islamic law, he would have wanted every treatment possible that might extend his life. The judge found in favour of the medical team, Mr Justice Moylan saying,

                “It [resuscitation or aggressive organ support] would result in death being characterised by a series of harmful interventions without any realistic prospect of such treatment producing any benefit.”

 

Julian Savulescu (Uehiro Chair in Practical Ethics, University of Oxford), an atheist, has written starkly on the issue of unusual or futile treatment being offered in response to patients’ religious preferences:

                ‘Religion and ethics are different categories of human enquiriy. Religion is as different from ethics as it is from mathematics. Religion is about faith; ethics is about reason. For ethics, religious values are just another set of values, to be treated in the same way as other relevantly similar values. Religion is about what biblical texts, traditions and figureheads say is right and wrong, and what some theists believe is right and wrong. Ethics is about what is right and wrong, about what we have reason to do, what we should do.’

However, my intention in this article is not to explore the infinite variety of belief that informs patient preference. We cannot reasonably expect patients to behave uniformly in matters spiritual, and questions of autonomy should not be invalidated by a religious background. Conversely, there is a school of thought that within a single health service patients should be able to expect consistency from their doctors when it comes to end of life care.

 

The questions that I would like to explore are:

i) Do doctors vary in their practise according to religiosity?

ii) Is such variety acceptable?

iii) If not, should doctors have to disclose their beliefs to patients? This question will lead me to ask, finall

iv) Should doctors disclose their beliefs in public debate on end of life issues?

 

Do doctors vary in their practise according to religiosity?

Clive Seale, now Professor of Sociology at Brunel University, conducted a survey of nearly 4000 doctors who care for dying patients. Having ascertained the type and strength of religious belief, he asked four questions, about the use deep sedation prior to death, attitudes to legalisation of assisted dying, the stated intent to hasten death, and willingness to discuss such decisions with patients. 13.4% described themselves as ‘extremely’ and ‘very’ religious, while 20.7% were ‘extremely’ and ‘very’ un-religious (with a bell curve type distribution in between).

 

Deep sedation was provided by 16.4% of very or extremely religious doctors compared to 22.7 of the strongly non-religious (p=0.03). Differences in intent (32.3 vs 50%), attitude to AD ( anti – 15.5 vs pro – 51.1%) and discussion (64.1 vs 87.9%, p<0.0005 for all) were more emphatic. The headline result, reported in the media, was that non-religious doctors were ‘40% more likely to sedate than religious doctors’ (BBC, Today programme audio excerpt).

The fact that religious doctors appeared less inclined to ‘discuss end-of-life treatment option with their patients’ was also highlighted, leading to conjecture that these individuals were perhaps complacent in their beliefs. A correspondent to the Journal of Medical Ethics, a practising Catholic, provided an intriguing explanation for this rather worrying observation:

                “Perhaps the religious doctors only felt compelled to do so in cases when they felt  the patient’s suffering was particularly intolerable, whereas the threshold may have been slightly lower for non-religious doctors who have a more favourable opinion of treatment options that may shorten life. Thus, in the context of such extreme and apparently intolerable suffering, the doctors providing potentially life-shortening treatment may have felt that it was inappropriate (and even unethical) to delay     treatment in order to engage in a discussion about this treatment option with their patients.”

 

A tendency to shy away from full discussion of treatment options at the end of life was also found by Curlin et al, in a 2007 NEJM paper;

                ‘Physicians who were male, those who were religious, and those who had personal objections to morally controversial clinical practices were less likely to report that doctors must disclose information about or refer patients for medical procedures to which the physician objected on moral grounds (multivariate odds ratios, 0.3 to 0.5).’

The Seale paper was not an isolated event. The Ethicatt study, published by Bulow et al this year, analysed responses by Protestant, Catholic and Jewish medical professionals in 142 intensive care units. It found that,

                ‘religious respondents wanted more treatment and were more in favor of life prolongation, and they were less likely to want active euthanasia than those affiliated’

(‘affiliated’ being nominal members of those religions, but without strong faith). A systematic review of the literature on this question (Mcormack et al, Palliative Medicine 2012) found that,

                ‘degree of religiosity appeared as a statistically significant factor in influencing doctors’ attitudes.’

 

Is this variability acceptable?

Following the press release and subsequent media coverage, a BMA spokesperson said,

                ‘The religious beliefs of doctors should not be allowed influence objective, patient-centred decision-making…’

Was this a criticism of the state of affairs that Seale had revealed? If we assume that the spectrum of patient preference was equally distributed across the variously religious subsets of doctors who responded to the questionnaire, we must conclude that decisions were not being made on purely objective grounds. The preferences (if elicited), and the decisions that were made, were clearly modulated by the beliefs of the doctors.

 

Julian Savulescu wrote the following response to the question ‘Should doctors feel able to practise according to their personal values and beliefs?’,

                ‘Objection by doctors, as is commonly practised, is discriminatory medicine. Only a fully justified and publicly accepted set of objective values results in ethical medicine as a proper public service with agreed and justified moral and legal standard to which doctors should be held.’

 

I have sympathy with this view, but think it is unobtainable, and possibly naïve. ‘Is it right?’ is probably the wrong question to ask. Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised. Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation. That is why my third question, should doctors disclose their beliefs to patients more readily, may have greater relevance.

 

It is not wise to make blatantly religious statements to patients, nor to frame medical advice with religious references. The GMC recently found against a GP, Richard Scott, who, as reported in the Telegraph,

                ‘told the patient he was not going to offer him any medical help, tests or advice and stated if he did not “turn towards Jesus then he would suffer for the rest of his life”.’

The GMC was accused on ‘militant secularism’ by Dr Peter Saunders of the Christian Medical Foundation. A case such as this takes us into rather extreme territory, and dwelling on it will polarise the discussion. Suffice to say, declaring ones religion in the wrong context is foolhardy. But should we expect doctors caring for patients at the end of their lives to mention, early on, that they have faith? To the individual patient such information would only be useful if that faith was definitely allied to a reluctance to prescribe deep sedation, or to take decisions with the intent of shortening life, or to enter into frank discussion. Would a religious doctor really accept that characterisation, or admit to such discinclination? I doubt it. That is the difficulty with large studies – it is almost impossible to know how they apply to the individual! So in answer to my third question I would to say no, it is unrealistic and unfair such face-to-face disclosure.

 

In the public arena however, my conclusion is very different.

 

Should doctors disclose their beliefs in public debate on end of life issues?

The Clive Seale paper is over two years old now, but I think it’s findings, and those of related studies, deserve to be revisited in light of recent debate on the Liverpool Care Pathway (LCP), and in anticipation of Lord Falconer’s upcoming Assisted Dying. Many people, from all walks of life, have been airing strong opinions. In these debates ‘religiosity’ is clearly relevant. Yet, while it is not routine for proponents or opponents to disclose their beliefs when engaging in argument, those who listen to their points will have little insight into the deep seated spiritual leanings that colour their statements. Seale concluded his paper with the comments, ‘Greater acknowledgement of the relationship of doctors’ values with clinical decision making is advocated’. Acknowledgement – that is the word.

 

The recent LCP controversy was sparked by a presentation from Professor Patrick Pullicino, a member of the Medical Ethics Alliance, and was followed by a statement co-signed by a number of religious representatives. These included: Chairman of the Catholic Union of Great Britain, Chairman of the Joint Medico Ethical Committee Catholic Union, President of the Catholic Medical Association, a member of the Catholic Nurses Association, and the Founding Chairman of the Health and Medical Committee, Muslim Council of Britain. Yet these affiliations were not revealed, at least to the casual reader, from the outset.

 

It was only by looking beyond the newspaper reports that one was able to discover that the MEA is essentially an alliance of religious groups. This realisation led me to wonder if their arguments, which at first sight appeared to be based solely on matters of prognostic accuracy and patient safety (very reasonable concerns) were in fact informed by deep seated religious principles – such as ‘sanctity of life’. The perception that life is God’s gift may well conflict with a guideline that instruct the doctor to prescribe sedation which may, unintentionally, shorten a patient’s life. I do not know this, because I do not believe in God, but it must be allowable to make conjectures linking the variations in behaviour revealed by Clive Seale with their possible psychological underpinnings.

 

If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy. For if policy is changed (or, more likely in the case of assisted dying, arrested in its evolution), those of us who do not believe in a God deserve to know how the care that we receive towards the end of our earth-bound lives has been shaped by religious belief. It should not be hidden from view, or made visible only to those who search beyond the surface.

 

Atheists must accept that religion is an integral part of life in the United Kingdom. We cannot disregard the historical events that led to the creation of the Church of England and its intimate relation to the state. Atheists must recognise too that much good in modern medicine derives from religion. Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity. Her obituary (Guardian, 2005) reads,

                ‘Religion always played a part at St Christopher’s [the hospice she created], though it was never forced on patients or staff: neither were necessarily Christian. The object was always as much secular as religious: to convince patients and their relatives and friends that they were not alone; that, despite their terminal condition, they still had value as human beings…’

 

As a result of the palliative care movement, and the way its associated philosophy has spread into the practise of general medicine, the UK’s reputation for the care of dying patients is unsupassed. The Economist Intelligence Unit found that the UK topped a worldwide ‘good death guide’ in 2010. Points were awarded for life expectancy, hospice availabilty and access to pain killers.

 

I am far more comfortable criticising religion than I am the religious. Who wouldn’t be? All atheists number people with faith among their family, friends and colleagues. In this blog I have tried not to criticise, but to present evidence that belief alters behaviour, informs opinions, and shapes public debate. Debate in turn informs policy, and if those religious individuals and groups who take the initiative in the public arena are to maintain the trust of those who read and reflect on their views, I believe they should disclose their beliefs up-front, and not wait to be asked or discovered.

 

Notes:

References – I have embedded links to relevant references rather than produce a list here

Disclosure: I am an atheist

 

The Tony Nicklinson Judgment

[A shorter version of this appeared in reply to a BMJ blog post at http://t.co/rIQHvTOq on 20th August 2012]

Unfortunately, for those of us who support a change in the law, Tony Nicklinson’s case has not advanced the argument very far. I was saddened to see Lord Falconer disagree, albeit sympathetically, with Jane Nicklinson when the two of them were interviewed on Channel 4 news. He did not support TN’s campaign. Why?

 

TN’s ambition in seeking legal protection from prosecution for whichever inidividual agreed to kill him was not representative of the AD movement’s aims. There are two reasons for this, as I understand them.

1) He is not terminally ill. AD legislation would be reserved for those who are dying rather than the severely disabled.

2) He requires more than ‘assistance’ – he is helpless, and needs someone to physically end his life rather than, say, provide a lethal cocktail and arrange it in such a way as to allow him, by his own action, to ingest it.

 

Hence, AD advocates such as Dignity in Dying and Lord Falconer have not put their full weight behind him. Redefining murder law was always an unlikely result. It is perhaps understandable that AD advocates have kept their powder dry in TN’s case, for realistic goals must be set by those wishing to change the law.

 

The differences between TN and a dying patient are, to my mind, slight, almost semantic. He has suffered what might be described as a social death (a term used in persistent vegetative state literature); he cannot function in society as he would wish. He interacts, yes, and is not as locked in as some have been. But he has decided that his social death should be met by his physical death. Nature will not help him, unless he contracts pneumonia and refuses treatment. He will not starve himself unless he really has to…and that outcome will be a terrible reflection on our society.

 

So why do I use the word semantic? Because the word being used to describe his possible death is ‘murder’, whereas the word used to describe the death of say, Diane Pretty (an MS sufferer) is suicide. This is because TN cannot activate a mechanism, but DP can. It is a question of neurological continuity and muscular power. A flick of the finger. An ounce of pressure on a button. The difference between murder and suicide.

 

There is a huge bioethical problem here. Imagine a patient who is becoming progressively weaker, day by day. Imagine AD has been legalised. Her case has been scrutinised, she has passed each medical and legal hurdle…separate doctors have vouched for her sanity, her consistent approach, the absence of treatable depression, the lack of family coercion…and she succeeds in finding a doctor who will help her. The arrangements are made. A lethal cocktail will be attached to her feeding tube, and when she presses the button a motorised syringe will squeeze the liquid into her stomach. She deteriorates, and loses the power of her fingertips and hands. She cannot activate the machine. She falls outside the legal framework. Now, in a more extreme state of illness and weakness, she is barred from ending her own life. This is a paradox. Because the definition flips from suicide to murder, everything changes.

 

I understand the stoney-faced legal attitude. Law is not there to cater for ‘hard cases’. It must protect the majority from abuse. So how do we move on?  Most would accept that TN’s situation is intolerable, not only for him but for right-thinking, humane observers. How do we allow him to be ‘murdered’ (a terrible word but to avoid it seems evasive) in a controlled, painless, legal way? There must be a route to individual legislation that does not permit legal precedent by which villainous individuals are allowed to murder sick relatives and then argue that it was their wish to be killed. The law cannot be that blunt.