Asymptote: answering the dreadful question

Working in a specialty that is almost overwhelmed by ‘2 week wait’ referrals (patients who are sent by their GPs with a suspicion of cancer), I am often asked, ‘How long?’ For some patients, inevitably, are found to have incurable disease. It is the job of me and my colleagues to provide an answer.

Frequently, it is our first meeting. Their scan may have been requested by another doctor, or they may have gone ‘straight to test’ in order to speed up the diagnostic process. The meeting is therefore an intense one; daunting for the doctor certainly, but that is nothing compared to the distance the patient must travel in the ensuing 20 or 30 minutes.

They were referred with a ‘suspicion’ of cancer. A condition of being on the 2-week wait pathway is that the referring doctor should have told them that cancer was on the cards. There is a box on the referral form that must be ticked, confirming that this conversation has taken place. Nevertheless, it still comes as a shock (indeed, in one survey of 160 patients, 49% did not realise that cancer was the primary concern [1]). Sometimes, it seems to me, the ease with which patients enter the pathway, the very large numbers, diminishes its significance.

If you go to a GP with new gastric, oesophageal, bowel, chest or bladder symptoms, there is a good chance that you will be referred on the 2-week pathway. It guarantees a rapid appointment. Any scans or endoscopies that need to be performed will be prioritised; the request will go to the top of the pile. Within 2 weeks there should be an indication if the problem is cancer, or something less serious… or nothing at all. For the fact is, cancer is still an unlikely cause of the symptoms, statistically. So when it is found, it comes as a surprise. A horrible surprise.

The point of the 2-week wait system is to find cancer before it has spread or grown too large to operate on. Sadly, it is still often too far gone. In these situations, one of the first questions a patient or their relative/partner may ask is, ‘How long?’

They mean, of course, ‘How long have I got?’

There are many ways to respond. As a doctor sitting before a patient whose whole life has just collapsed, I want to give a truthful, accurate answer. But I cannot. I am honest about this. I might say, ‘If I give you a number, in months, maybe years, I will probably be wrong.’ That is the truth. But I have already put the units out there – months. ‘I have been proved wrong so often,’ I say, to emphasise that this is no science. There are so many factors in the equation – the tumour’s ‘biology’ (is it ‘aggressive’? – well presumably, but this is our first meeting, I do not know how long it took to reach this stage); response to chemotherapy, should they choose to have it, if it is offered by the oncologist; their vital spirit (if that is really a thing). An optimal combination of these factors may sustain the patient for one, two, three years. Alternatively, the tumour may race ahead, suppress the appetite, steal the muscles to reveal the bones below, and cause death within 8 weeks. I just do not know.

It is okay not to know. It is reasonable to admit it. But it does not help them. They need some sort of orientation. There are matters to see to, family members to inform. How can I leave them with nothing, with no facts at all?

There are facts. For most cancers the data has been analysed. The trouble is the favoured metric is ‘five year survival’. For example, look at the Cancer Research UK website for pancreatic cancer. It has a table showing survival at 1, 5 and 10 years. The numbers are 20%, 3% and 1% respectively. What does that tell you, as a recently diagnosed patient? Or, from my point of view as a doctor, what message do these numbers give that I can communicate to the patient? Well, the 10 year number, 1%, appears irrelevant; no point mentioning it at all. The 5 year stat is 3%. That’s basically the same as the 10 year stat – i.e. no-one really makes it that far. 3%. 3 in a hundred. Less that 1 in 20. Is that me? Unlikely. Who’s going to make plans on that figure? So what about a single year? 20%. A tangible number at least. To be in this group one needs to be lucky, one presumes. Non-aggressive, a response to chemo, a positive attitude. But… how long? 1 and 5 year survival rates don’t tell you that.

The truth is, you must wait and see. Wait until you see the oncologist. Wait until the first scan after chemo – is it bigger, smaller, or the same? Now is too soon. I’m sorry, I cannot make a prediction.

Understanding is asymptotic to reality. The gap between the estimate and the truth gradually diminishes as time passes, but even near the end, when the harsh reality becomes clear, there is no absolute certainty. When the lines do touch, when the timeline is ultimately severed, the patient is longer conscious. Only then, in the realm of the infinite or its opposite, is there certainty.

Not before.

 

Reference:

[1] Cummings R, Vincent M. Two-week cancer referrals: what do you tell the patient?. Br J Gen Pract. 2010;60(578):689-90.

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The problem of late-stage consent in Assisted Dying

Assisted-dying law in Canada requires the person to be alert and able to provide consent just before their death. The Government of Canada website on Medical Assistance in Dying (MAiD) says,

You must be able to give informed consent both:

• at the time of your request
• immediately before medical assistance in dying is provided

This seemingly sensible caveat has come under scrutiny after Audrey Parker, 57, diagnosed with stage-four breast cancer, made a public plea for it be abandoned. She died (an assisted death) on November 1st, but was frustrated that in order to benefit from MAiD she had to make arrangements earlier than she would have liked. However, being unable to guarantee that her mental capacity would be sustained during the next few months, she had to make a decision while still able to provide late stage consent. In her case it was quite possible that cerebral metastases, or intercurrent illness, would have rendered her confused or delirious.  The end result was that she had a ‘good death’, but was possibly deprived of some life.

Critics of assisted dying will see this as a very good example of why we shouldn’t legalize it in the UK. How can you pass a law that ‘forces’ people to die before their natural time?

Late-stage consent seems a good, safe idea. It has parallels with other medical interventions or procedures, where the patient’s final ‘permission’ is requested even when consent (or in this case an active request) has been provided earlier on. It ensures that only a patient who is absolutely certain on the day will have an assisted death. But this case shows that laws cannot accommodate all circumstances. There will always be situations that push at the boundaries. Those who support AD will say that the greater good is still served. More people are dying in Canada according to their own wishes, at a time of their choosing. Although apparently forced into a corner, Audrey Parker made a decision and was not coerced.

What if the need for late-stage consent was removed in diseases where cognitive performance was likely to be diminished over time? If a person loses mental capacity, they are unable to exert autonomy at the moment of death, and must hand over the final decision to another. That person, be it a loved one or a professional, will have to make the decision and initiate the final process. This sounds more like euthanasia. However clear the instructions given by the dying person – e.g. ‘when I lose my mind, please make sure my death is not prolonged, please make sure it is assisted’ – a difficult and onerous judgment has to be made by the advocate. The rate of progression of a person’s disease cannot always be predicted. There will be fluctuations. No-one knows how it is going to go, if there will be agitation, acute pain or a gentle retreat into coma. Identifying the point at which the dying person’s wishes should be enacted will be subjective. To ask another to do this, however strongly they agree with the dying person and however much they want to protect their stated wishes, appears too much.

The Canadian newspaper Globe and Mail, which has covered MAiD in detail, obtained a draft report by the Council of Canadian Academies into how to manage the problem of mental incapacity in the era of MAiD. The person with worsening dementia would be the most common presentation. Here, someone with their faculties intact will make an advance decision that their death be assisted when they have lost capacity and appear close to death. Again, this requires others to make a judgment on symptom severity and timing.

Kelly Grant and Jessica Leeder write in The Globe and Mail,

The draft of the partial report analyzes three scenarios for advance requests: Cases such as Ms. Parker’s, where patients have already been assessed by two doctors and approved; cases where patients have been diagnosed with dementia; and cases where people have not received a diagnosis but want to make an advance request for medical assistance in dying (MAiD), just in case.

“The complexity of each individual [advance request] for MAiD would be influenced by the timing of a request in relation to its implementation. [Advance requests] prepared shortly before MAiD was to be provided (e.g., when a patient already met eligibility requirements) would involve much less uncertainty than [advance requests] for MAiD written well in advance of the point at which they might be implemented,” the draft says.

Uncertainty is the issue. How to make decisions regarding a situation that has not yet developed. For people who do not have a diagnosis yet, the ‘just in case’ group, applying for MAiD seems unrealistic. For those with a condition that will predictably cause a loss of mental capacity, it would seem discriminatory for them to be exclude from MAiD. However, to maintain safety, this seems likely to continue. The Dying with Dignity Canada website, in its frequently asked questions page, is clear:

Can one make an advance request for AD?

In Canada, advance requests for assisted dying are not allowed. It is forbidden for a clinician to proceed with administering MAiD without first obtaining final consent from the patient.

[  ] The ban on advance requests has had serious implications for individuals who have been approved for MAiD and plan to die in the next days or weeks. In some cases, patients choose to reduce or even refuse pain medication out of fear that they will be too impaired to provide final consent for MAiD. For some, the pain associated with their medical condition is too great, and they must effectively abandon their request for MAID in order for their pain to be kept under control.

and,

Can a person with dementia qualify for AD?

[  ] A person with a capacity-eroding condition such as dementia might lose capacity before they satisfy one or more of the other eligibility criteria in the law. For example, the person might already be suffering intolerably, but they may not be in an advance state of irreversible decline, or their natural death may not yet be “reasonably foreseeable.” By the time they have reached an “advanced state of irreversible decline,” they may no longer be capable of providing consent for MAiD.

It seems clear that a law passed to ease suffering might, in some situations, cause distress, a sense of ‘hurry’ and occasional paradoxes, such as a patient foregoing pain relief in order to maintain capacity. A mess? Enough to discourage supports of assisted dying in the UK? Quite possibly.

But MAiD has been a success, in a manner of speaking. As Kelly Grant writes in the Globe and Mail,

…1,525 people hastened their deaths with the help of a doctor or nurse between July 1 and Dec. 31, 2017, up 29.3 per cent from 1,179 such deaths in the first half of last year.

There is clearly a need for MAiD in Canada, judging by its uptake. It is providing comfort to a highly vulnerable group who would otherwise lose control of their final hours. Do the ‘exceptions’ justify a change in the law such that MAiD can be extended to those without capacity on the day of their planned death? Is it justifiable that a those who ‘lose their minds’ are deprived of something that those who don’t can benefit from? Or is MAiD, still in its infancy, and a rare thing in a global perspective, too delicate to meddle with?

***

For an excellent description of how MAiD came into law and who was involved, see this G&M article ‘Fight to the death: why Canada’s physician-assisted dying debate has only just begun’ by Sandra Martin.

 

***

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Fear and medicine – friend, foe, natural bedfellow?

Juliet entered the ward expecting a normal, busy day. But the face of her colleague Nethmi who met her by the nurses’ station told her that something was up.

“What?” asked Juliet, responding to Nethmi’s wordless warning.

“Mr Peterson. Bed 19. They took his vascath out last night.”

“So?”

“Did you tell the nurse to do it?”

“Yes. It wasn’t being used. It was ten days old.”

Already, Juliet’s skin had cooled and the hard ball of nausea was forming, revolving, touching adjacent organs.

“Why? Is it a problem Nethmi?”

“It was in his last major vein. It wasn’t supposed to come out without consultant permission. Didn’t anyone tell you?”

The door to the doctor’s office opened. Juliet glimpsed the rolled-up sleeve of the renal consultant. She steadied herself, and entered. Fear enveloped her.

*

Fear is a feature of every trainee doctor’s life. In new or particularly challenging roles, it can be a daily occurrence. As the medical writer Danielle Offri observes, our contemporaries in other walks of life rarely feel it –

I sometimes compare career notes with friends who are in the business world, and I’ve asked what their worst fear is. It’s usually something along the lines of making a financial blunder, screwing up a major project, having an investment fall apart, losing a job, disappointing the boss or family, losing money. I have to restrain myself from saying, That’s it? That’s all you are afraid of? That, of course, is the basic fear in medicine, that we will kill someone, or cause palpable bodily harm

Is fear limited to the medical profession? That seems unlikely. A policeman or woman on their first shift, or an established detective on hearing that the woman they placated after a complaint of domestic abuse has been found dead; a navy officer taking charge of their first ship, or facing investigation after a near miss on the high sea; a newly qualified barrister presenting their first defence, or explaining to their chambers how a sure-fire win was ultimately lost. All of these will feel fear in the workplace. It cannot be restricted to doctors.

I have written about the impact of fear before. In 2000 The Lancet published a short piece on the ‘Gut Thump’ (£)– the sensation that grips your insides when you think you might have damaged someone. This phenomenon was described more analytically by Scott et al in their paper on health care workers’ response to patient safety incidents. It is an adrenaline-driven sensation that reveals acute personal anxiety. Why should we develop such a ‘fight or flight’ response to another’s harm? The obvious answer would appear to be – fear of blame for making mistakes.

The NHS has worked hard to ensure that identifying a locus of blame is not the first instinct after a patient safety incident. Most trainees know this, and believe it. Yet, fear remains a common emotion. Despite all the good words about depersonalising blame, the facts seem to show otherwise. We have seen Dr Bawa-Garba go through the full gamut of blame, ultimately being found guilty of Gross Negligence Manslaughter. Despite her success in appealing against the GMCs insistence that she should be struck off forever, the criminal verdict remains in place. The BMA Chair Dr Chaand Nagpaul presented the results of a survey suggesting,

…nearly 8,000 doctors also found 95 per cent were fearful of making a medical error and more than half feared they would be blamed for problems arising from failures in the system.

Blame then appears to be alive and well, a conclusion backed up by in The BMJ with articles such as ‘Back to Blame.’ or an editorial from October 2018 which speaks of doctors who are ‘fearful’ and who

…increasingly work within a culture of litigation and blame, carrying the full burden of accountability…

But I don’t think the average doctor’s acute anxiety on the ward or in the ED arises from a fear of prosecution. It is probably more instinctive than that. It can afflict the most confident and assured of us, in the most supportive of systems. Danielle Offri again;

…fears can easily spiral out of control and overwhelm students and interns. If this happened only rarely, to only those few who entered the medical field with their own pre-existing mental-health conditions, that would be one thing. But the truth is that the fear overwhelms even the most psychologically sound and well-adjusted trainee. At some point it happens to nearly every single person who travels through the medical training process. If you don’t believe me, just ask any doctor you know.

Just ask any doctor you know. It’s true.

*

Let’s look at Juliet’s fear, in the moment. As the door opened and she glimpsed Dr Padan’s shirtsleeve, what was it precisely that caused the cold sweat?

His anger? – he was not known to blow his top, but this might just do it… the patient is precious, he’s survived three transplants and multiple complications… and I’ve just messed it all up.

Damage to her career? – is it possible that this mishap, seemingly down to her, could result in some kind of formal disciplinary action? Surely not. It’s the first bad thing she’s ever been involved in.

A complaint, from the patient (or, should he die, please no), his family? – but how could they complain about her individually? It’s the whole ward, the whole team surely.

An accusation of negligence, like that paediatric registrar who was in the news? – but this is different, a single lapse, not a whole series of issues like there appeared to be in that case. No, Juliet isn’t truly worried about being singled out and taken to court.

The patient. The patient is going to have to an operation now. His dialysis might be delayed. He might get an infection, he might bleed… – that’s what she fear. His prospects for survival are lower now, his chance of running into complications higher, because of her decision.

*

Are those who make the choice to put themselves in this position hard wired to feel personally culpable for every bad thing that happens? To an extent, yes. Doctors are highly conscientious. Their performance is rigorously monitored and assessed during their studies, and throughout the early years of training. There is always somebody watching. Assessments are routine and frequent. To progress, evidence of satisfactory performance must be accumulated. Negative outcomes, mistakes, might accumulate and amount to ‘concern’. It is hard to imagine it any other way. Without such assessments poor or dangerous doctors could glide under the radar and get ‘signed off’.

But it may be even more basic than that. I think it is an enhanced sense of connection between one’s own actions and the welfare of the patient. Whatever is happening to them, it’s my fault. If I misread an ECG and they go on to have a full-blown heart attack, it’s my fault. If I prescribe a drug they are allergic to, it’s my fault. If I cut the wrong structure during an operation, it’s my fault. If not mine, whose? The patient’s, for being ill in the first place? The ‘system’, for not guiding me to the right answer? My seniors, for not being there to check my work?

No. It was me.

It in is these reflections, I think, that fear is nourished.

Caroline Elton, an occupational psychologist who has counselled many struggling doctors published a book, Also Human: The Inner Lives of Doctors, and in this Guardian article about it the emphasis is on chronic, long-term emotional strain – an accumulation of acute stressors. In the extract, Elton describes vividly the overwhelming sense of helplessness and anxiety felt by a newly qualified doctor on day 1. The author is almost incredulous that it can be that bad. Again, one wonders if any other trainee, in any other walk of life, experiences anything quite so stressful. The scenario, of nine patients all needing attention and nobody around to help prioritise or lend perspective, points again to that sense of personal responsibility. Everything depends on you. It is hard to think of another job in which your physical action or mental calculation can immediately improve or worsen another human-beings welfare to such a great extent.

*

How to counter this natural tendency to feel fear?

Firstly, we should ask ourselves if fear should be banished entirely. As a patient, I might prefer my doctor or nurse to feel that sense of risk of trepidation that precedes a significant action. Fear might slow them down, it might make them think twice – is this really the right thing to do? Fear can be a warning that you are drifting beyond your competency, or that you don’t quite have enough information. Fear makes you careful.

In her book Caroline Elton mentions the ‘detached concern’ that doctors were traditionally trained to adopt. This approach has long had its critics (see this book review from 2001 for Jodi Halpern’s ‘From detached concern to empathy – humanizing medical practice’), and Elton suggests that chronic detachment has a more insidious effect on mental well-being than emotional engagement. If we accept that engagement leads to an enhanced sense of accountability/responsibility for our patients’ outcomes, a logical extension is that fear arising from that sense of responsibility is in a fact natural ‘side effect’ of being a good doctor.

But fear gnaws at the soul. If it proves disabling it will do no one any good in the long run. It can take the doctor out of the profession, through the phenomenon of ‘burnout’. Burnout is high on the agenda of professional and public debate at present. This month the author and doctor Siddhartha Mukherjee wrote on it in the New York Times. The article explores resilience to stress, and describes several essential dimensions along which a doctor must develop in order to ‘survive’. Referencing Victor Frankl (1905-1997, a neurologist and holocaust survivor) and Daniel Pink, author of such books as Drive: The Surprising Truth About What Motivates Us, Mukherjee writes:

What allows some humans to acquire resilience in the face of the most brutal and dehumanizing experiences? Frankl traced the roots of resilience not to success or power but to a sense of purpose and the acquisition of meaning. Later writers, including Daniel Pink, expanded Frankl’s concept of meaning along three dimensions: purpose, mastery and autonomy. We acquire resilience when we find purpose in our work. We seek mastery — expertise, skills, commitment and recognition — in our domains. And we need autonomy — independence — in what we do.

Purpose, mastery and autonomy. These things come with experience, but gaining experience will undoubtedly involve error. The challenge then must be to understand that life in medicine will involve periods of acute anxiety in relation to those mistakes, and yes perhaps even fear, but that unless the decisions or behaviour preceding the events are so far outside the norm as to make them cavalier or irresponsible, these episodes will probably improve us. Such bland reassurances do nothing to make a person feel better in the short term, but support and understanding does ensure that over time, be it days or weeks, the doctor involved gets back on track. Speaking personally, the only time I felt real fear as a trainee was when an error led to a meeting in which it was made very clear to me that I was all on my own.

As a supervisor and trainer the hard balance, I find, is that of defusing the situation of ‘blame’ while encouraging the doctor to reflect on what they could (often should) have done better. For in each of these incidents there will be a degree of personal accountability. That is life in medicine – a career of direct accountability for the welfare of others. Somehow we must all find a way of carrying this without being broken, and not only that, ensure that the equally intense positives are recognized and enjoyed.

*

Dr Padan could not hide his annoyance. The handover session proceeded icily. When the team came to discuss Mr Peterson it was confirmed that his precious vascath had been removed. Juliet looked away. Her eyes watered but she kept it together. Dr Padan discussed the fact that the patient now needed new venous access, and instructed the registrar to contact the vascular surgeons. It had come to that. They were going to have to cut him open to find a blood vessel. Juliet sensed danger, her gut contracted, but then they moved on to the next patient. Only at the end, while the team dispersed onto the ward, did Dr Padan tap her on the shoulder and take her aside.

“Juliet. That vascath. You know it shouldn’t have come out?”

“I know now Dr Padan.”

“I thought we had made it clear in the previous handover that it was not to be removed.”

Juliet’s world spun and closed in on her. Blame settled onto her like black spell materialising from the air.

“I’m sorry Dr Padan. I don’t think I knew. It wasn’t on my list, I usually make a mark or use an asterisk or something if it’s really vital.”

Dr Padan looked along the ward. “Didn’t the nurse in charge challenge you?”

“No.”

A measure of relief. It was not all on her.

“A shame. It looks like the communication wasn’t very impressive all round.”

“I’m so sorry Dr Padan. Will it make things very difficult…?”

“Yes. Unfortunately, Mr Peterson was in a difficult situation already, three failed transplants, sepsis.” He paused. “Look, Juliet. I’m annoyed at the situation, but I’m not angry, at you. You were right to assume that the vascath should come out, in principle. But in this case there were individual factors that you didn’t know, it appears, or didn’t fully understand. This is a high-risk specialty. It won’t be the last mistake that occurs on this ward. It wasn’t all your fault. OK?” He walked away. Juliet stayed put. Nobody could accuse Dr Padan of having the highest degree of ‘people skills’, but Juliet concluded that this had been his attempt to be nice. His way of diluting the sense of blame.

It didn’t make Juliet feel good, but it was enough. She pressed forward into the day, and made a mental note.

Don’t ever mess with a patient’s vascath without checking again.

 

***

See also ‘Stuff Happens – patient safety incidents and 2^nd victims’

 

To explore my books on Amazon, click here

Evidence for evidence

At a recent patient safety meeting the subject of the ‘theatre cap challenge’ came up. This is an initiative that encourages all operating room (OR) staff to write their name in pen on the front of their disposable theatre cap so their identity is clear, which is especially important in an emergency. There have been incidents where not knowing who was who in a tense situation caused patient harm. Seems sensible. But it has not been adopted by all. It is a change. Its proponents do not understand how anyone could argue with it, while opponents explain that it’s not necessary, things have been fine without it, and who are you to tell us what to do anyway? A lively argument has ensued.

One of the arguments against the theatre cap challenge is: what’s the evidence that it improves patient safety? This is a question that can be applied to any change in process. In the discussion I sat in, it was suggested that this question – ‘where’s the evidence?’ is often used to block innovation. Modern medicine is founded on evidence, and we call it EBM – evidence based medicine. Without evidence, a new treatment or process is just a hunch.

Modern doctors were brought up to have absolute respect for evidence, and to base their clinical decisions on it. Most of the time, national or local guidelines and protocols do the hard work for us, having been written by experts who have read and understood the medical literature. Often, in areas that are less well studied, guidance comprises expert opinion alone. There is not always an evidence base to look to. That is not EBM’s only weakness. Trisha Greenhalgh’s 2014 BMJ article ‘Evidence based medicine: a movement in crisis?’ brilliantly describes its weaknesses, which include generalizing ‘average’ outcomes to the non-average individual, excluding the patient’s agenda or voice in decision-making, and the vested interests (i.e. drug and medical device companies) of those who sponsor and develop trials. Because EBM cannot provide every answer, in real life we also depend on ‘XBM’ – experience based medicine. Who is to say which is more powerful, and which is more often right? A combination, surely. For now though, EBM rules.

From the Centre for Evidence Based Dentistry, showing the interaction of evidence with experience and patient’s preferences.

So what exactly is evidence? Classically, evidence is the result of a well-conducted study – preferably a randomised controlled trial in which two or more groups of patients are treated in different ways. In a blinded trial the patients don’t know what treatment they are getting, thus negating the placebo effect. In a double-blinded trial the doctors and nurses don’t know either, so they can’t influence the results with unconscious bias. The patients’ survival, response or well-being is measured over time, and the treatment associated with the group who does best is deemed to have won. Over time, several trials looking at the same intervention or drug can be grouped together for a meta-analysis, the most powerful of studies. Sounds easy. Individual trials take years to plan, develop and analyse. They are well suited to medicines, and have been the mainstay of improvements in survival for patients with leukaemia and other cancers for instance.

Could such evidence be gathered for the theatre cap challenge? Possibly. You could have three hospitals who use it and three who don’t, and measure the number of patient safety incidents in the OR. Or you could analyse one hospital for a year, introduce the cap naming policy, then analyse it for another year. Or… you could all agree that it’s just plain common sense, we don’t need a trial, this is silly, just do it. The latter is tempting. This ‘common sense’ approach seems well suited to certain areas of improvement in medicine. You have an idea, in response to a problem, you develop it, try it out locally, then seek to influence others so that they roll it out. Perhaps you persuade a Royal College or specialist society to make a policy announcement. In a few years, it’s embedded.

The trouble is, where do you draw the line in deciding which innovations require good quality evidence? A new medicine – of course; we would all agree that it should go through phase 1 to 3 of the trial process so that it can be shown to be non-toxic, basically efficacious, and then genuinely safe and beneficial over the long term. Phase 4 studies can then analyse the effects on large group of patients after the drug has been signed off. The volunteers who suffered terrible injuries at a trial centre in Northwick Park in 2006 were part of a phase 1 trial into a new molecule TGN1412 – its first use in humans. Following this failure, the drug never reached phase 2. Without that phase 1 trial, many more could have been harmed.

What about new surgical techniques? Should, say, an ‘improved’ drill for making holes in bones be tested against its predecessor in proper trial? A drill is a drill, right? If the surgeons like it, why not just let them use it? Favouring absolute stringency and long-term data collection for surgical kit is the suffering associated with vaginal mesh repairs. This material went through the required tests, but began to be used in a wider range of indications (stress urinary incontinence and pelvic organ prolapse). Now, after numerous reports of injury and reduced quality of life, it is accepted that it should not be used in those two situations. As a healthcare system, we got it wrong. And it took quite some time to recognise it.

The threshold for requiring evidence can change depending on your situation. Some patients who appear likely to die from advanced malignancy are keen to try anything, even if it experimental. Two years ago this led to a major controversy as Lord Saatchi proposed the ‘Medical Innovation Bill’ that would allow access to unproven therapies. He argued that terminally ill people (such as his wife, Josephine Hart, who had died of primary peritoneal cancer) should be allowed to access unproven therapies. The bill was defeated, in part because of the persuasive counter-argument that in bypassing the rigorous trial process the evidence base would be undermined for future patients. Hundreds of people might receive treatment X, but without trials we never be the wiser as to whether it worked or not. Lord Robert Winston, opposing the Bill, recalled how his own father had died in his 40’s from an ‘innovation’ in the administration of antibiotics.

My rational, evidence-based brain also opposed the Bill – apart from the undermining of the evidence base, patients might suffer. Their vulnerability, through illness or desperation, could made them targets for the purveyors of these novel therapies. Yet the other side of my brain thought, if it was me, and if there were no new drugs to try through established trials, I might well ask the same to anything. One chance in a 100 for extra life is better than zero.

In this instance the requirement for good quality evidence was in opposition to human nature. This instinct was reflected in the media, where support for the Bill was strong in some quarters. Letters were written by groups of doctors. It was emotive. Across the Atlantic, Donald Trump signed off on a US version of this Bill in 2018 – The Right To Try Bill. Typically, emotion was heightened by the presence of a boy who might benefit from it. A populist Bill? A libertarian Bill. For many, a common sense Bill.

Walking through a ward, one sees many practises that are not evidence based. You can take this to extremes. Is there evidence that antibiotics help treat urine infections? Probably not, but we do it. Everybody knows they work, don’t they? Is there evidence that assiduously keeping a patient’s oxygen saturation over 93 or 94% is beneficial? No. Is it really necessary to slavishly maintain their potassium in the normal range? Who really knows, there hasn’t been a study? [Please do correct me if I’m wrong.]

How about this one: is there evidence that consultants doing ward rounds every day to see patients every day is better than their trainees leading ward rounds? No. But wait, what am I saying? Am I suggesting consultants shouldn’t see their patients every day? Well, it’s a question. Jeremy Hunt wholeheartedly supported the driver a 7-day consultant delivered ward service, and invoked evidence to prove that without it more people were dying than would with it. He got himself into trouble, as his interpretation and use of available evidence was felt to be flawed. Yes, it seems sensible, eminently sensible to patients and relatives who have sat in the ghost town of a hospital on a Sunday afternoon… but staffing 7 days will take doctors away from other duties during the week. Before making such a major change, surely we need good evidence. Or are those who demand evidence just naysayers and obstructionists who value their weekends too much? Are they vexatiously applying the dogma of EBM to an area that should not require evidence?

Some things are so deeply embedded in our medical education and culture that when evidence is at last gathered, we are surprised. For instance, during cardiac arrests we have always given adrenaline injections. Now, years after this treatment was introduced, there is pretty good quality evidence that it doesn’t help the brain, and might actually damage it when given during out of hospital arrests. The advanced cardiac life support algorithm goes so far as to say there is no evidence that it helps patients long term.

During heart attacks, I always gave patients high flow oxygen; now there is evidence that it doesn’t help. In septic shock, I gave litres of Gelofusine – a once commonly used plasma substitute. Now, it’s basically regarded as poison and can’t be found in the hospital. All those ‘sensible’ ideas, proved wrong over time.

The need for evidence is subjective. The EBM purist may inhibit or at least slow down innovation, while the confident ones who say ‘just get on and do it’ may risk future harm. The current controversy over Babylon’s health app is a good example. It seems like a good idea, but without rigorous testing may end up convincing people who are having heart attacks that they are having a panic attack and just need to relax. On the one hand it appears potentially ‘transformative’, on the other it is formally untested. Is it a new treatment? No. Is it an new process? Most definitely yes! In the light of the mistakes that have come before, it seems sensible to test it, in case we find that a glitch results in deaths or harm.  As it stands this mysterious ‘black box’ of technology is an example, in Ben Goldacre’s words, of ‘closed science’.

Once they have it, experts can debate endlessly the merits of the evidence base; an organisation such as NICE exists to do just this. But prior to this, it seems we need to agree on what kind of innovations require evidence, and what kinds justify a ‘suck it and see’ approach.

 

 

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Caring and disdain: emotional juxtapositions in Adam Kay’s This Is Going to Hurt

 

Adam Kay’s book really made me think. Among the gags and orifice-centred humour, examples of disdain for patients coexist with expressions of deep caring. I wasn’t sure who the real Kay was. But then I realised, he is probably all of us. In our fatigue we have all simultaneously despised patients who (we perceive) are wasting our time or contributing directly to our distress, while at the same time feeling deeply for the plight of the vulnerable and blameless. Doctors are human, and make judgments. Any once or future patient reading Kay’s book will soon realize this.

At 3AM, when nature dictates that we should be asleep, it is hard not to feel angry when called down to diagnose a worried patient with having ‘taste-buds’ [p48]. How can one not feel toxic towards a patient when bleeped twice after 1AM to countersign their passport application [p77]? All this while contending with the disruptive domestic and financial pressures [p86-90] that, uniquely among the ‘professions’, destabilise the lives of young doctors (e.g. self-funding mandatory courses and exams, being unable to take leave to get married [p159] or be ill [p71], not knowing where you will be working [p61]). There are a lot of important ‘life-style’ insights this book, and for that reason I’m glad that thousands of people have read it.

I am not glad that those thousands might come away with the impression that doctors have little respect for their patients. In the book Kay refers to them several times as ‘f***ers’ [p26], and talks about ‘everyday patient idiocy’ [p74]. And don’t mention Jehovah’s Witnesses [p42] – ouch. Doctors trained to respect all views and all levels of understanding might find this quite hard to read. A practising, GMC registered doctor could not, surely, have got away with it.

It was with this in mind that I talked about the book with a patient recently. She said it was awful, what we had gone through in our training, and I replied, ‘Yes, it’s hard. But not everybody reacts like that. If they did, there would be no doctors.’ By which I meant, no doctors to deal with the next placental abruption, or the next difficult open-heart procedure, or the next dying child. She left the clinic room with a new perspective on the diaries, and I left the clinic feeling bad that I had dismissed the author as some sort of snowflake. Or, as unrepresentative – for by leaving the profession, he had, one could argue, lost some validity.

Which brings us to the word of the month – resilience. What was it about the job that Kay could not ‘hack’? In the end, it was a complication – a previously unrecognised placental abruption [p254] that bled catastrophically during a caesarean section. The baby died, the mother lost 5L of blood. It was the last straw, but followed a trail of tragedies, near misses and bad outcomes that are probably not unique to obstetrics and gynaecology. Each one brought with it stress, fear, a sense of personal accountability.

The cumulative psychological injury caused by these events (see my post ‘2nd victims’ for more) was in the end unsupportable. Interesting to me though, is the impression gained in the first half of the book that this doctor, more than most doctors, would be capable of withstanding these injuries due to the impersonal and dismissive descriptions of patients that he put in his diary. Superficially, there is an absence of caring. Yet, between these entries (which are humorous), he slips in the fact that for 3 months has been visiting the neonatal unit on his way home to check on the progress of a preterm baby, Baby L [p45]. Outside the hospital, he supports a near-suicidal friend [p73]. When invited to patient’s funeral, he goes [p84]. There is evidence of deep caring. There is dissonance. A natural tendency to care, diluted, polluted perhaps, by the endless demands placed upon a doctor in training.

So did Kay care too much? Is that the diagnosis? Or did he fail to develop the essential skill of caring enough to provide treatment in a sincere manner, while understanding that bad things happen, complications and error are inevitable (even as we continually do our best to minimise them), and by learning from them we become more expert.

Diaries lend themselves to psychological analysis by people who do not have genuine knowledge of the writer. The entries were written shortly after the experiences that they describe, and are bound to be emotionally raw. The humour, coming at the expense of nameless patients, reflects accurately the conversations that go on in hospitals. The sadness is sincere – and the book would not have such value or profundity without it. Samuel Shem’s classic ‘House of God’ has a similar mixture, as does the unforgettable Jed Mercurio TV series ‘Cardiac Arrest’. Perhaps these two responses to life in hospital could not co-exist forever in one mind.

But enough analysis! It is sufficient to recognise that this honest account sheds light on the stress-distress that trainee doctors commonly experience, and I am pleased that non-medics have read it. More importantly it explores the emotional fluidity, call it mercurialism, that many doctors develop to survive.

 

***

 

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Get real: a conversation about alcohol

Moderate alcohol drinking is recognised as a major health issue. Although end-stage cirrhosis and liver failure are the most visible and tragic results of alcohol dependence/addiction, there are many more people out there who drink regularly to excess but who have no physical or mental problems with it… until an abnormal blood test or a scan brings them in front of a doctor and the cold calculation is done. Recent studies (see below) show that many diseases, not just liver damage, are linked to alcohol use, and the maximum advisable weekly limits seem to go down every few years. So the conversation with a non-alcoholic patient who nevertheless drinks too much is a common one. Finding the right approach, and the right motivation, is hard. This week there is controversy about a new ‘2 days off a week’ message, with a prominent alcohol campaigner threatening to resign from Public Health England because the alcohol industry is involved in the initiative. And today, a Guardian columnist writes about procrastination. It’s hard.

In this dialogue a 55 year old patient has had a scan that suggests significant liver damage. But he feels perfectly well. The doctor (who may not be perfect here) tries to engage…

 

*

 

Dr: There’s evidence of liver damage here, Mr Jones. The most likely cause is the alcohol you drink. The fibroscan result was 9.

Patient: You think I’m an alcoholic?

Dr: No, you’re clearly not addicted as such, or ‘dependent’, but you drink enough to have caused damage to your liver. The scan is pretty accurate. [↓]

 

Fibroscan: a painless and non-invasive way of measuring the ‘stiffness’ of the liver, which equates to the amount of scar tissue (fibrosis). Severe scarring causing cirrhosis, and this can lead to liver failure, cancer, transplantation or death. The fibroscan provides a number, or score. Over 9 suggests you have developed serious liver scarring.

 

Patient: How do I stop it?

Dr: (Is this a serious question?) You need to stop drinking.

Pause.

Patient: Doctor, do you drink?

Dr: Yes I do.

Patient: What would you think if someone told you you to stop drinking?

Dr: That’s a good question. I sit here every week, and tell people the same thing. That, although they are not “alcoholic”, by which I mean their day-to-day life is not affected by their addiction, they hold down their jobs, often they do very well in those jobs, they live with their families, that although they function perfectly well, nevertheless they are drinking harmfully [↓]

… and, I know that most of the time when I tell people that they need to stop drinking I may as well be talking to myself, or shouting out into the busy street below us here.

 

Alcohol dependence:

‘A person who is dependent on alcohol may feel a strong desire to drink and may have difficulty in controlling how much they drink. They may keep drinking despite knowing about or experiencing harmful effects. The body may become more tolerant to the effects of alcohol over time, which can lead to a person needing to drink more to feel an effect. If a person becomes dependent on alcohol, they can develop withdrawal symptoms if they stop or reduce their drinking suddenly.’

Harmful drinking:

‘Drinking is considered harmful when it leads to physical or mental health problems such as alcohol-related injury, inflammation of the liver or pancreas, or depression. In the longer term the person may develop high blood pressure, cirrhosis of the liver, heart disease, some types of cancer or brain damage because of their drinking. Heavy drinking can also lead to relationship problems, problems at work, college or school, or violence.’

(Taken from National Institute for Health and Care Excellence website)

 

Patient:: And why is that doctor?

Dr: Because alcohol is a part of our lives.

Patient: Yes! Yes it is. So in telling me I need to stop drinking, you are telling me to remove a part of my life.

Dr: That’s a decision for you to make, isn’t it? Because the tests that you have had suggest your life may be shortened if you don’t.

Patient: Among the hundred other things that might shorten it, doctor. I am a little bit overweight, and I know that might be affecting my chances of a long life. Despite this spreading stomach, I like to cycle at the weekends, and went I went on holiday recently and admitted that I would be doing this in Austria, the insurance company wouldn’t tale me on. Said I was in a dangerous sport category. I often drive too fast. I used to smoke. Why should my life be shortened by alcohol, when there are so many other possibilities.?

Dr: I can only advise you on the reason for coming here, to this clinic. I can’t lecture you about other lifestyle choices. But I can tell you, the fibroscan suggests significant liver damage. And it’s not just through your liver that your life might be shortened. We know that there is a good correlation between cardiovascular disease [↓], strokes and cancer with alcohol use. So in a way the fibroscan is like an hourglass, telling us how your body is fairing, not just your liver, your whole body. It may be that your liver works perfectly well until the end of your natural life, but I can tell you that there are signs that your body is being injured.

 

The Lancet medical journal published a paper that caused a great deal of comment. Based on large numbers (599,000 drinkers), it suggested a real association between increasing alcohol use and ‘all cause mortality’. The graphs below show how the likelihood of death and cardiovascular disease rises with increasing alcohol use. The ‘safe’ limit appears to be 100g/week, which equates to 5 or 6 glasses of wine of pints of beer per week. Interestingly, the ‘tick’-shaped graph on the right suggests that cardiovascular disease may be less common in the 100g/week drinkers as compared to minimal drinkers (‘cardioprotective effect’).

 

Patient: That’s the problem doctor, the uncertainty. I could stop drinking now, but it might make no difference to my life. Except… to make my life less happy.

Dr: You need alcohol to relax then?

Patient: Just as you do doctor, probably. Just as so many of us doing our society. Perhaps I would rather benefit from those thousands of nights, meals, meetings with friends that are made more pleasurable and enlivened by alcohol, and accept this against a reduction in lifespan of 10 years [↓]. Perhaps instead of 85 I will live to 75, or instead of 75, just to 65. Perhaps, to me, that an acceptable price.

 

The Lancet article also includes a graph showing how much life you can expect to ‘lose’ according to how old you are now and how much you drink. A 45 year old man who drinks >350g/week alcohol will lose, on average, nearly 5 years of life compared to someone drinking <100g/week.

 

Dr: That’s a choice for you, Mr Jones.

Patient: That’s what I dislike. Sorry. You hand the burden of choice over to the patient and almost literally wash your hands of it. But you don’t frame it as a choice. You tell me I need to stop drinking, or else I die early. The way you put it, if I don’t make that ‘choice’, I am happily saying goodbye to years of life. That makes me look stupid. You don’t accept it as a balance of medical risk and psychological or social benefit.

Dr: I didn’t mean to be so paternalistic. But at the end of the day, all I can do is give you the advice based on medical evidence. It would be same if you still smoked, and you were at risk of having a fatal heart attack. I cannot stop for you. Only you can do that. There is some help available, maybe some medication too, although that’s usually for the seriously dependent. The amount you drink, something like AA seems disproportionate. Ultimately it’s down to whether you open the bottle tonight. When you see that cool glass in the fridge, can you stop yourself, for a night, maybe two.

Patient: But if I choose to ignore that advice, I know what you will write. In a few months’ time, when I see you again, you will write a letter to my GP that ‘despite medical advice I chose to continue drinking’, and that will put me in a certain category. The non-compliant patient. The man who doesn’t really value his life. The stupid patient.

Dr: No, I wouldn’t. I am more subtle than that. I understand addiction, dependence.

Patient: You said I wasn’t dependent.

Dr: Look, some of my patients are dying from liver disease as we speak. This week I have seen a young man bleed to death on the ward, his skin deep yellow, his muscles wasted, his breath foetid, his brain no longer able to recognise his own family. His own teenage daughter. That is the death that liver disease can cause. And if you are drinking actively, the window of opportunity for salvage, when you might have a liver transplant for instance, is closed to you.

Patient: You really think that could happen to me?

Dr: It is unlikely, but it’s possible. I can’t tell how rapidly your liver disease will progress. There are factors  [↓] that we still don’t understand well that make some people more prone to liver damage than others.

Patient: Like what? Can’t you check them out?

 

Doctors run a series of tests to exclude other causes of liver damage (e.g. hepatitis C or haemochromatosis (a genetically inherited iron overload condition). But studies show that other genetic factors are involved in predisposition to the development of liver damage; these may be tested in the future. Although not strictly ‘inherited’, a person’s socioeconomic status is also strongly associated with the risk of alcohol related disease or death. (Graph taken from Fair Society Healthy Lives – The Marmot Review)

 

Dr: Some of them, not all. So I can’t reassure you, but I can’t threaten you with certain knowledge that your liver will fail either. But I can say that the only way to reduce the risk of you dying from liver failure, or any of the other alcohol related diseases, is to stop drinking.

Patient: And change my whole life. A change in life in exchange for a longer life. What value the pleasure it gives me? The friendships it cements, through conviviality, the sense of occasion? I play in jazz band at the weekends… I cannot imagine doing that without a few drinks…

Dr: You are talking about habit. If you want, you can change that. The challenge here is, I think, visualization. You do not see or feel the damage that is being done Mr Jones. It is genuinely silent. Unlike the smoker who sees her leg go black, or suffers chest pain, you will not feel anything from your liver until it reaches the point of no return. I don’t say this to scare you into abstinence…

Patient: Why not? Why not hit me with the worst picture. That, after all, is why I need to stop.

Dr: Most people would say haranguing patients is not productive.

Patient: Do it. Give us all the information. Then you know you have ‘educated’ us honestly.

Dr: I don’t get the impression it will have the desired effect. But there are ways to do it. They are called Brief Interventions. Perhaps this is one. Holding up a mirror, getting the patient to understand how much they are drinking, the risks. It works, sometimes [↓]…

 

Alcohol Brief Interventions (ABI) are delivered in primary or secondary care. A large meta-analysis showed that they successfully reduced alcohol use at 1 year by 38g/week, more in men than women strangely. Below are some pages from ABI booklets for staff in Scotland.

Dr: So, do you think you will stop?

Patient: I can say yes, it will make it easier to face you and leave, but to honest… not really. The benefit is too intangible, the threat invisible. It’s all so gradual, so marginal. I feel sorry for you. I really don’t know what you could say that would make me change. Are you going to see me again?

Dr: Not here. But perhaps, if things get worse…

Patient: If I go yellow you mean?

Dr: Perhaps.

*

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Death eclipsed

 

Finding the right balance between active treatment, which may include surgical or semi-surgical interventions, and palliative care, can be difficult. The two can go on in parallel, of course, but often a full palliative care assessment and plan takes place when the primary medical or surgical team have drawn a line under their management. Ideally, palliative care expertise would be provided alongside active treatment, if it is recognized that the medical condition is incurable, death is likely in a certain time-frame, and there are symptoms that need to be alleviated. In the real world, perhaps due to resource limitations, perhaps due to fear of confusing families, or perhaps because it is very difficult to ‘do’ palliative care while patients are being taken away for various procedures, the two approaches tend to occur sequentially. If a patient dies shortly after such an intervention, there will be regret that the right balance was not achieved. A potentially ‘good’ death was eclipsed by hospital-based interventions that ultimately brought no benefit.

 

In this scenario I describe a patient, Thomas Franklyn, for whom the correct balance between active treatment and palliation was difficult to find. It is fictional, and I have deliberately kept the ‘procedures’ and the ‘disease’ unnamed, so that its principles can be applied in any medical area.

 

Part 1

Complaint: Excerpt from letter, written by family member to the Trust:

‘…we do not understand why Thomas had to go for all those procedures, including one to stop bleeding that occurred as a complication, when he was clearly dying and suffering. The doctors asked him how he felt about having them, but he was in no state to give an answer. By the time the palliative care consultant came to see him he was so weak, any chance of going home had passed. In the end he died in the hospital which was not what he wanted. It was obvious that he was dying from the beginning, but because of these decisions his last few weeks were spent waiting, recovering from procedures or in pain… ‘

 

Part 2

View from the ward sister:

You can often tell when death has become inevitable. The patient engages less, eats less, sleeps more. There weren’t the classic signs of imminent dying in Thomas’ case, but we all knew it was not far off. So on the wards rounds we mentioned palliative care, and the doctors agreed it was time. But at the same time there were more procedures that could be done, not for the sake of it, but because they were designed to ease certain symptoms, or reduce the risk of infection, and ensure a bit more time. We asked Thomas if he was happy to have them – he was quite capable of agreeing and signing consent forms – and he said yes. He got through the first two procedures pretty well, but the after the third there was a bleed, and we rushed him down one night to sort it out. They stopped it, but he was never the same afterwards. A lot weaker, far less engaged with us and the family. He never really recovered. Palliative care came to see him again, and because our team now made it clear that there was nothing else to be done from their side, they started full end of life care… a syringe driver etc. I could tell the family weren’t happy. They had set their hearts on him getting home, had prepared a room downstairs. But he deteriorated too quickly. It was so sad. Then, two months later, we received the complaint…

 

Part 3

View from Foundation Year 1 doctor (FY1):

I’ll never forget this patient. I discussed the case with my educational supervisor and wrote a reflection on it. The main challenge, for me, was balancing that sense of diminishing returns from the procedure against the time it was taking to arrange them, and the discomfort they caused. We all knew he was dying, and to be fair my consultant discussed the possibility that the procedures might be futile, but on the other hand if they worked, it was possible that Mr Franklyn would survive an extra two months, maybe three. That would have been a real gain, for him. But it didn’t work out.

The thing is, I had a sense that it wouldn’t work out. Mr Franklyn was getting weaker every day, not eating well, and I had a bad feeling. In the discussion about futility, which we had in a meeting room one morning before heading out to do the ward round, I was asked my opinion. It was my second month as a doctor. I was really pleased to be asked, and I said that I thought he looked very frail and wouldn’t tolerate any complications well. But as soon as I started talking, I thought – what do I know? I haven’t even seen a patient with this before. I was very happy to accept the consultant’s view, as she must have seen hundreds. So we talked to the family and the patient, who was still alert enough, and were honest that the benefit could be good, but that it would take more time to get the procedures done. They agreed. We didn’t say they were high risk, I don’t think my consultant would have suggested them it they were. But then there was a complication, and it appeared to speed up Mr Franklyn’s dying. I remember going home thinking – I knew it! I was right that time, but next time I might be completely wrong. You have to respect experience.

 

Part 4

View from the consultant:

At the end of the day, it looks like a bad call. I was very careful to involve the whole team, nurses, the family, and the patient of course. But in these situations where you’re dealing with quite specific diseases and specialised procedures, people look to the clinical leader in the team. They are the ones who have seen it before, who have the deepest experience. The patient, Mr Franklyn, was passive… by which I mean weakened by his illness and happy to receive advice from a team he trusted. It isn’t right or fair to dump all the information, the pros and the cons, on a patient and wait for a yes/no answer. People are different, but they often need to be guided. That is our job. I guided him towards the procedures that, if successful, would have allowed him home for a good couple of months. One of them went wrong, as we know.

What about the palliative care side? That was a criticism, that we – I – didn’t get pall care up sooner. Well we did, but Mr Franklyn was being prepared for procedures, getting transfusions, having antibiotics to cover the procedures, having regular blood tests… the situation wasn’t really stable enough for them to initiate a calm management strategy. So I said, look, we’re in the middle of everything, we’ll let you know when the procedures are done. We were proactive on agreeing an escalation plan and resuscitation parameters, but even that was a bit tricky. What if he deteriorated just after, or during, an intervention? Should we let him go without any circulatory or breathing support, or try to re-stabilise? Can you take a patient with a obviously terminal condition to ICU to get them over an acute, procedure related complication? ICU may have a view different to the ward team? If you decide no, you should tell the patient as they go for the procedure that if they deteriorate they may never wake up again, as we will let them go. Who is going to agree to that? (In the event he did deteriorate, with a bleed, and that required all hands on deck for a while.)

What did I learn? The more I see of these sad situations, the more I am inclined to say to patients, yes, there are things we can do, and they may work, but we are not going to stop the underlying disease. So do not be afraid to draw the line. Tell us when you have had enough. We, the doctors, may not be the best ones to tell when that time has come, despite all our training and all our experience. It may sound like I am absolving myself of responsibility, but sometimes it is true.

 

Part 5

View from the palliative care consultant:

I often ask myself the question – how emphatically should I make the argument against further interventions, if I feel that the patient is likely to die very soon? This requires very careful analysis, and each case is different. I  am asked to see patients under many adult specialties – neurology, cardiology, general surgery, gastroenterology, gynaecology – and each one has its specialised procedures, its own evidence and knowledge base. Although I am confident that I can recognize the approach of futility, I am not always right, and I have seen lives extended almost miraculously, by fairly straightforward surgical or endoscopic or radiological interventions. They can work. So it is not justifiable for me to come onto a ward and say, wait, slow down, leave this poor man alone, he is ready to go home to die. On the other hand, I, and the specialist nurses, and perhaps ward nurses, may need to be guardians of a patient’s dignity if we feel the specialist team is having trouble seeing the wood for the trees. It’s a balance. Each time. With Mr Franklyn, events show that we were wrong, and I was wrong. If I had stepped in assertively after the second procedure, recognizing that he was continuing to go downhill, we may have been able to get him home, albeit for a week. That would have satisfied the family, and Mr Franklyn. We lost that opportunity.

This cases adds to the sum total of experience. It also confirms that while we do our best, we cannot control the disease, nor can we control the outcomes of every procedure. Complications do occur. They will occur. But usually, they do not, and the patient gets the best out of the procedure.

We involved the family in every decision. The patient too, but he was becoming disengaged. We decided to see the treatment strategy through – perhaps there was an element, in the primary team, of ‘now we have started we should finish’. And it didn’t go as we hoped.

The complaint, when it arrived, was upsetting. But it shows – and this is a lesson – that although we thought the family were alongside us with the decision-making, they weren’t, not entirely. We flattered ourselves that there was consensus, but perhaps we convinced ourselves of that because we knew what direction we wanted to go in.

 

 

***

 

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The Choice, episode 6/6: Different

 

Jessica watched Stackson walk away. Her head was pumping with the offense, the latent chauvinism, the hurt caused by his words. Dennis the charge nurse was at her arm trying to apologise or explain or something, but Jessica moved away from him to follow her consultant. She caught him at a turn in the corridor. Patients were being wheeled past. A few members of staff, who looked up briefly and nodded if they recognised either of them.

“Excuse me, Mr Stackson.”

He turned abruptly. His eyes were unfocussed, as though his thoughts were elsewhere, way beyond the hospital’s walls. But his expression remained unsympathetic. “Yes, what Jessica?” She found the use of her name quite disarming. But she allowed her anger to embolden her.

“The way you spoke to me just then. I found it very… embarrassing. I had no control over that patient’s admission overnight.”

“It’s not just that Jessica. It’s your whole approach to managing patients here… not medically, I mean making sure that things happen when they are supposed to. Scans. Bookings.”

“My style is not confrontational, I admit it. But i’m afraid Mr Stackson you can’t always have your patients first on scanning lists or in theatre, there are many other teams…”

“It’s what I expect on my firm. Sorry.”

“I wish you had been able to explain that without…”

“Look. This is a tough area. Sometimes you have to…”

“Accept you’re not well suited? Do you think I can be a surgeon?”

Now she had put him on the spot, it was for him to say yes or no. He had to commit.

“You’re technique is…”

“Slow?”

“Yes, slow.”

“I am careful. I can speed up.”

“And you can’t take offence when your consultants get frustrated, if you do you will burn yourself up. I see it all the time with you…”

“Women?”

He would not confirm that this was what he meant. He looked at his watch. Somewhere to be, as usual. Jessica gave up. He was as rude as ever.

“I have got to go Jessica, my wife… “ But he did not bother to explain what pressing engagement required him to leave in the middle of the morning.

Jessica walked back to the ward, pleased that she had confronted him. Stackson had said nothing to rule out a future in surgery for her. All her ‘weaknesses’, including her operative speed and technique, were modifiable.

She could, and she would, do it.

***

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The Choice, episode 5/6: Regret

 

Jessica didn’t go to the memorial. She stayed true to her initial instincts. But she did visit the hospital quite regularly, and ten years later, when she was 67, they invited her to a celebration of local doctors. For she was about to retire herself, and her contribution to the community was going to be recognised publicly. Not really her thing, but she agreed to go, and worked on a short speech.

She arrived early and wandered around looking at photographs of prominent staff members. She had prepared herself even before she saw it, but the sight of Jeremy Stackson staring out with a well-trained expression of benignity shocked her nevertheless. It had been taken close to his own retirement. He sat at an angle, as instructed by the photographer. Jessica lingered. Then someone appeared at her shoulder.

“Hi Jessica. Ah, Jeremy Stackson. Did you know him?”

It was the Alexander France, a senior surgical consultant whom she knew.

“Not well. We met a few times.”

“Carried on right to the end, trying to keep up to date. The senior surgical trainees were coming through with techniques he could never get to grips with, he was one of the last old-fashioned general surgeons I think, happened to fall into vascular. In his day he could do craniotomies, bowel resections, anything!”

Jessica felt like talking now.

“I was his registrar once. I found him difficult, to be honest.”

“Yes, he had a reputation like that. High standards.”

“That is one way of describing it.”

“Ah. I see. You really didn’t get on?”

“It was pretty bad.” But Jessica didn’t need to expand. There was no need to share the reasons for making the choices that she had.

“When was that, if you don’t mind my asking?”

“19__.”

“Really! Well, of course, that was a bad time for him.”

“How?”

“He lost his wife. Quite a long illness. And the hospital couldn’t let him go on extended leave, just couldn’t… there was too much work to do. He was holding the department together really. They talked him into staying on all through her treatment… “

Jessica made an excuse. When the time came for her speech she crumpled up the paper and just said a few positive words. No-one seemed to mind.

***

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The Choice, episode 4/6: Invitation

 

So, Jeremy Stackson had died, aged 82. Well into retirement. Jessica found an envelope in her wire tray. She was invited to an event – not a memorial as such, more an after-memorial appreciation, to be held in the hospital’s postgraduate centre one evening. Food, wine. As a local practice lead and administrator, somebody thought Jessica should be on the list.

The idea chilled her. Of course, he would not be there, and to go would show respect for all the work that he had done during a long career. But to not go… well, would anybody really notice? To do so would be petty, and beneath her. How likely am I, she asked herself, to open up about the way he made me feel that day? Not very. But a part of her would want to. Or at least, make oblique comments like, ‘…but he didn’t suffer fools did he?’ or, I was his trainee once, he had a real go at me…’ She imagined the understanding looks, for his reputation as a difficult man was well established, even if his reputation as a tenacious innovator who tended to get his own way out-shone the darker side.

No. To go would be hypocritical. She didn’t like him. I’m 57, she reflected, I don’t have to do anything.

At the next practice meeting the invitation was discussed. Another partner, Christopher, felt it was important that the practice was represented. Jessica was the natural candidate. The room looked at her. She made a non-committal reply. Later, the fellow partner commented,

“Jessica, you looked pretty uncomfortable when we were talking about Jeremy Stackson’s memorial thing.”

She paused. All the rationalisation, all the ‘putting it behind me’, all the genuine happiness in her professional and personal lives fell away, as she replied,

“No. I can’t go. He single-handedly ruined my surgical ambitions. Didn’t I ever tell you…?” and she told Christopher everything.

“But you’ve made such a success of this life. Do you really regret not being a surgeon?”

“No. I make it a policy to regret nothing. But it should have been my decision.”

“It was, wasn’t it?”

“No. The realisation that I was or wasn’t suitable for a life in surgery should have come from within me.”

“Sometimes we need people to put the mirror in front of us. Like you did with what’s her name, that trainee, er… Helena Banks.”

“Not in the way he did. He destroyed me, in front of everybody. He was foul.”

“Mmm. I guess we don’t want you telling that to his friends.” Christopher laughed.

“Or his wife,” added Jessica.

“No, she passed away a long time ago. By the way, regarding Helena Banks. I hear she’s one year away from becoming a medical consultant.”

They both looked skywards, sharing the same thought. God help her patients.

“So that’s final is it? You won’t go?” asked Christopher.

“I can’t. I’ve spent so much time hating him. And it hasn’t abated.”

“You know, in his mind, that interaction with you was probably nothing. He didn’t even remember you when you met later. It was nothing. Put it aside. Life is too short.”

Jessica thought about it, hard.

***

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