Author: philaberry

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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The Hill, episode 7/7 – Confusion


-Martin, the son-

Yes, I was confused. And I felt guilty. I always knew this time would come, but life had drawn me north to Leeds, and it was not realistic for me to move back down to support Mum and Dad in their final years. Perhaps, if I had, this confusion wouldn’t have occurred. Perhaps, if I had been more involved in their care, there would have been more certainty.

The confusion I felt was because Mum rang me that night, after having spoken with Dr Green, in an agitated state. She said they were refusing to help Dad, that they didn’t want him to go to the high dependency ward, didn’t want to give him the mask… she made it sound like they were leaving him to die. I tried to calm her down. I knew, having met his lung specialist once, and knowing that Dad was already plugged into the local hospice team, that he really didn’t have long to live. So, Mum’s words were on the one hand distressing – how could they not treat him? – and, on the other hand, perfectly in keeping with what I knew. He was dying. We had to face that. And now this infection was clearly going to speed up that process. It may sound cold, but I had been thinking about this for months.

I got in the car and drove south, to their local hospital. As long as they keep him comfortable, don’t go too far, I thought. Hopefully they’ve got all the notes, so they know what kind of state he is in. I wasn’t confident that Mum would be able to tell them everything.

When I arrived on the HDU (evidently, they had changed their minds about him going there) I was genuinely appalled. Dad was sitting up, propped up really, with one arm stuck out to the side on another pillow, a bruise spreading from his wrist to his elbow. You could see the swelling where the blood had gathered. He was having a break from the mask, but the pressure had made a groove on the bridge of his nose, and there were pressure marks elsewhere on his face. He was barely conscious. A nurse had drawn up a trolley with a stomach tube on it, intending to put it in through his nose. It was not what I expected.

Following the conversation with Dr Harvey and Dr Green, Dad was moved to another ward. He lived for another 6 hours.

Do I regret what happened? I regret that his last day was filled with urgency and not a little panic, though I don’t think the things that were done to him were cruel or way over the top. He was barely conscious, as I have said, though who knows what he was hearing and thinking. I hope everyone was kind to him. He was a very intelligent man.

So yes, the last day was not ideal, especially for a man whom anyone, any doctor, any relative, could have predicted was not going to live very long. We didn’t plan for that final day. I wish we had. Nobody told us to plan for it. If I had been around more, during those admissions in the lead up to the final one, I might have pushed him and Mum to discuss it together. But what words do you use? It is so very… negative, depressing, almost tempting fate. Yet Dad’s fate was written long before, by the cigarettes, the long disease.  I should have been braver. And I will.

If, when, Mum gets ill, I am going to find a way. We will face the final day well before that day arrives.

 

 

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The Hill – episode 6/7, Words not spoken

-Albert-

Oh that these words could be captured, snatched out of the space before me, my mind’s eye. I hear all, I feel much, and I think. Thinking is as much as I can do. But I do not raise by head, and I can barely open my eyes, poisoned – as Dr Green explained to an even more junior colleague – by the waste gases within me. Carbon dioxide is my enemy now.

Despite Dr Green’s careful technique and generous anaesthetic injection, I felt the needle scrape the edge of my wrist bone as she searched for the artery. Quite a relief, when she finally got the tube in.

Despite her concern, and the vocal concern of nurse Carlos, I didn’t mind the tight mask at all. The reason I went for it and tried to move it aside was because I suddenly felt sick. Probably the air in my stomach. It was a reflex.

But my attitude to the mask is not what really interests them. They need to know my deeper feelings, on the existential plane, viz: do I want to live? Or, in more nuanced language, what am I prepared to go through to live a little longer? Not that it is entirely up to me; I get that. What treatment are the medics can accept is proportionate to my situation.

Nurse Carlos made his view very clear, in his body language. I heard him question Dr Green over by then nurses’ station – ‘What are we trying to achieve here?’ Not a bad question. What? For me, it is simple. To get me through this infection, and home again. If I can do that, and steal another two months before the next crisis, I’d say that was worth it, if that result can be delivered. But I have picked up hints that the mask isn’t actually very effective for this infection. In which case, is this for show? Is it just to demonstrate, to Mary, to Martin, that they are trying?

If that’s the case, I don’t want it.

My mind has outlived my body, these lungs. I have known it for two years.

So why didn’t you leave instructions, you ask? Why not stipulate that you don’t want the needles, the masks, the sense of emergency that hangs around you like a charged cloud poised to strike? Because here, in this bed, I have sensed exasperation in the tones of some of the staff, who don’t think I should be here. They feel, I sense, that arrangements should have been made already, to protect me from this experience. And to protect team, I suppose.

So why didn’t I, an old man with lungs like dried brown sponges thrown up from the sea, anticipate this? That is complicated. I could have spoken to Mary about it, but she was as bruised from the last few admissions as I was. Just about coping. Coordinating the carers. Not exactly robust herself. I wasn’t going to pull her towards me and initiate that conversation. Not after all the energy she had expended in helping me get through the last illness.

So, did somebody else need to do encourage us to talk? To nudge us.

My doctor, my GP? Perhaps, but she was only just keeping up with the to-ing and fro-ing from home to hospital. She seemed to take the lead from the hospital team. I’m sure she would have done it well, but it didn’t seem to come to mind.

Who then? The hospital doctors. I’ve been under about fifteen teams. No-one really knows me. I did have a lung consultant, but the appointments were every 6-months, and I missed the last one because I was in here anyway.

So, I guess it was down to us. Perhaps my son, if he lived nearby, might have picked up the signals. After all, I’ve been going to the hospice. You’d have thought that fact alone would have made it obvious.

Yet here I am, the bridge of my nose aching under this mask, and everyone looking defeated.

They’ll take it off soon.

They’ll take me to another ward.

They’ll keep me comfortable.

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The Hill – Episode 5/7, His son arrives

Laura got the bleep at 9.15. She was on the post take ward round, still a couple of hours away from being released. It was Carlos.

“Err Laura, you’d better get up here. Albert Johnson’s son has arrived and he’s NOT happy.”

“About what?”

“About the state his Dad’s in.”

“What state?”

“Oh everything. The lines, the bruise…”

They all sat down. Dr Harvey the consultant too. Laura appreciated that. She was no longer carrying the burden on her own. And she was interested to see how the HDU consultant was going to manage this. For not only was an explanation about Albert’s ‘state’ required, there was the big decision, the decision that was not really a decision because it was so medically obvious… the DNACPR.

Dr Harvey quickly became Laura’s hero, for the day at least. After Albert’s son, Martin, had decompressed – ‘How can you have done this to a man of 85? Look at him, it’s as though he’s been beaten up! It’s so undignified, he’s got tubes all over the place.’ – Dr Harvey calmly explained the steps that had led to Albert’s admission to HDU. How Laura had discussed it with his wife (who sat quietly, evidently exhausted, and apparently happy for her son to drive this meeting), how in the absence of a clear direction either from previous hospital discussions or any documentation from the community, the team had ‘escalated’ his care, which did unfortunately bring with it some down sides. How the ‘trial’ of escalated care appeared to have failed, and that now was the time to move Albert somewhere more comfortable, to remove the lines and the probes, and to focus on comfort.

“Palliative care you mean,” interjected Mary.

“Yes, precisely. Let’s be honest and clear hear, Albert is dying, and I, we, have a responsibility to make his final hours or days as comfortable as possible.”

Presented like this, so plainly, without uncertainty or doubt, it seemed so straightforward, here, now, in the new light of a fresh day. Laura wished she had been as emphatic last night, but to talk like this, before the ‘trial’ of escalated care that both she and the consultant knew was never really going to work, would have been brave. Too soon in the admission. And too contrary to Mary’s instincts.

Dr Harvey continued. “We will still be treating Albert, very intensively in fact. But the treatment will not be to increase his oxygen levels or make his breathing stronger, but designed to ensure that he does not suffer. He will be visited by doctors and nurses may times during the day, as they assess him and make adjustments. He will not be left alone.” Laura wanted to take notes, but instead stored it in her brain. How Dr Harvey made palliation sound like a treatment in its own right. But now the hard part. The DNACPR. After all that had come before it should be automatic, almost not worth discussing, but Laura knew that the family’s acceptance that Albert was dying did not equate to acceptance of DNACPR. Strange and illogical in a medic’s mind, but understandable perhaps. She tried to put herself in Dr Harvey’s place – if she were her, what would she say now?

“Mrs Johnson, Mr Johnson, we need to discuss another thing.” Mary tensed. The words with which Dr Harvey had introduced resuscitation were similar to those Laura had used; Mary was now on guard.

“As you may know, unless we leave instructions otherwise, any person whose heart stops suddenly in the hospital undergoes resuscitation, in an attempt to restart the heart. Now in Albert’s case, who, sadly, seems very likely to die from this infection, that wouldn’t be the right thing to do. As we have discussed, all our efforts should now be focussed on keeping him comfortable, and resuscitation is a very dramatic, emergency treatment involving lots of doctors and nurses who do not know Albert.” She paused, to see if the family appeared to have an awareness of what was involved. Laura saw Mrs Johnson lean forward; she knew what was coming.

“So you will just let him die?”

But Martin the son, leaning back now, as though in defeat – not at the hands of doctors, but of sad circumstances, of his father’s inevitable demise, took her hand; “No Mum, it’s not like that. He’s dying, you see? Nobody can bring him back once he’s gone.”

Laura, emotionally labile through fatigue, wanted to hug him. He understood. He would help his mother understand.

Shortly after that, the two doctors left the room. A nurse stayed behind with the family for a while, as is often the case, to see if they wanted or needed anything.

“Feels like a hill, or a mountain, you have to conquer sometimes,” said Dr Harvey.

“Resuscitation discussions you mean?”

“Yes. All of it. And when you find yourself being the bad guy, having to reshape expectations, deliver the worst news, it takes it out of you, like a long climb. But in the end, you have to remember, these are all treatments. And you don’t provide treatment that is plainly not going to work. You musn’t.”

“Like I did when I moved him to HDU?”

“In retrospect, yes. But you had little choice. And things move on, others get involved. You were aware of the percentages. We’ve all been there.”

Laura made her way home, against the flow of those living more regular lives.

 

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The Hill – Episode 4/7, Admission to the high depedency unit

By 2AM Albert was simultaneously low in oxygen and high in carbon dioxide, both resulting in drowsiness. Laura admitted him to the high dependency unit (HDU), an area that she, as the most senior medic on site, was managing. She asked the nurse in charge, Carlos, to apply the tight mask. In order to measure the levels of those two gases, she inserted an arterial catheter, succeeding at the third attempt. Despite the minutes she spent pressing down on the prominent and tortuous blood vessel at the wrist, a haematoma developed. This quickly spread under the paper-thin skin, taking on a livid, purple-red colour.

Carlos expressed his misgivings. But he knew about the discussions that had gone on before. He knew how difficult the situation was.

“How long do we try for?” he asked.

“If it’s clearly failing, we tell his wife that we have tried and that there is nothing more we can do.”

“What about his resus status? We have to know.”

“I couldn’t finalise that. It wasn’t reasonable to make her go through it. I mean, she’s 80 herself.”

“But it obvious.”

“I can’t just write the form, not yet.”

“Other family? Can’t they come in?” asked Carlos.

“There’s a son coming in first thing in the morning, he’s driving down from Leeds now apparently.”

“Ok, so we can sit them down then. Dr Harvey does a ward round at 8.30… she won’t want to carry on too long with non-invasive ventilation…”

“I know, I know. I really wish they’d dealt with these decisions last time Mr Johnson was in hospital. They brought him here, he made it through the unit, now the family has expectations. They didn’t even discuss DNACPR.”

“Who was it? Which consultant?”

“It doesn’t matter.”

“But who was it?”

“Stanhope I think.”

“Figures. He never talks about it.” Carlos knew them all, their strengths, their weaknesses. Their reluctance.

*

The windows brightened. The nurses handed over and the night shift departed. Albert had survived the night. But he did not tolerate the mask well, pulling it away from his face several times. At 8.30AM Dr Harvey arrived to go round the HDU patients. A respiratory specialist, she looked at Laura with some incredulity as the senior trainee explained the sequence of events.

Business-like, with the energy and decisiveness of one who has rested well overnight, Dr Harvey said,

“We’ll step him down to the ward, ASAP. There’s no indication for non-invasive ventilation here. I do understand Laura, your hands were pretty much tied. Did you discuss it with the consultant on call?”

Laura held a thin plastic cup of instant coffee near her face, letting the steam refresh her sore eyes. “To be honest Dr Harvey, they couldn’t have helped much, unless they came in and talked to the wife at two in the morning. It wasn’t the medicine that was the difficult, it was the communication. Even if the consultant had a strong opinion that admission was inappropriate, I would still have had to convince the wife.”

Dr Harvey smiled faintly;“True! Isn’t that always the case. Medicine is communication! Well, you steered your way through the night, but this poor man needs to get onto a ward. We’re doing nothing for him here.”

Laura excused herself. She had to attend the post-take ward round. Her feet dragged. In doing her best, it appeared she had done no good. Yet, as she passed the canteen and glimpsed Mary Johnson sitting at a small, circular table nursing a cup of tea, she told herself that medicine was often a compromise. Evidence, numbers, statistics… these were the bedrock, but patients and their families also had a view, and to oppose those views was to risk isolation, criticism, a loss of trust. A middle way had to be found.

 


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The Hill – Episode 3/7, Laura and Mary talk

 

Dr Laura Green asked Mary Johnson to join her in a quiet room.

Dr G: Mrs Johnson, I’d like to talk about Albert’s illness. I’m very worried about him. The chest infection, pneumonia, is severe, and…

Mary: You don’t think he can survive? Is that what you wanted to say? [she was not aggressive, just frank, as though this was a conversation she had had before]

Dr G: Well yes. The x-ray is so severe, and the readings, the results, just from looking at him and examining him, I can tell his body is struggling. For a much younger man without such bad lung disease this would be a very difficult illness, for Albert, much more so.

Mary: So what are you saying Dr Green? [Mary eyed the name badge, reminding herself… she had met so many doctors]

Dr G: I wanted to share my concerns with you. It’s really important you and the rest of the family know how much danger Albert is in.

Mary: Oh I know. We’ve been living with it for years now.

Dr G: This is different, I think. There is a very real danger he will deteriorate over the next few hours.

Mary: He can go on the breathing machine again.

Dr G: We should talk about that Mrs Johnson. I don’t think that treatment will really help him this time. That’s why we need to make some decisions, between us, about Albert’s care. This may be the time to concentrate on keeping him comfortable and ensuring his dignity. By this I mean not transferring him across the hospital or inserting any new lines or probes, and avoiding the mask. If it’s unlikely to work, it would be better to avoid the discomfort involved.

Mary: But last time, it worked. He got better.

Dr G: [Pausing. She knows that Albert’s improvement last time probably had little to do with the mask] This is different Mrs Johnson. [the emphasis feels argumentative; Laura fears that she is crossing the line between explanation and persuasion, or coercion] This is pneumonia, last time he didn’t have that, he had a milder infection, what we call an exacerbation of lung disease. [Mary’s eyes are blank; the distinction is academic to her]

Mary: So if he gets even worse, what do we do?

Dr G: We keep him comfortable. There are drugs to ease the sensation of feeling short of breath.

Mary: Like what?

Dr G: Morphine, generally. [the word triggers something in Mary’s mind.]

Mary: Morphine?

Dr G: We use it frequently, near the end of life.

Mary: [a long pause] You will let him die?

Dr G: He is dying, I’m afraid Mrs Johnson.

.

.

Dr G: I’m sorry… [Mary is looking at a blank wall, her thoughts completely hidden from Laura]

Mary: I’m not sure.

Dr G: About what Mrs Johnson?

Mary: About letting him die like that.

Dr G: What do think would be best?

Mary: To at least try. [Laura’s bleep, which has been silenced, vibrates on her waistband. Problems are stacking up out there, in the ED, on the ward]

Dr G: I see. Well it’s important that we agree. What do you think your husband would want?

Mary: He told me. He would go through anything to get home and spend more time with the family. Anything.

Dr G: That is very natural. I just… I just don’t want him to have to go through things that have very little chance of helping. Futile things.

Mary: He wouldn’t mind.

Dr G:  [changing track, knowing that the conversation will not result in the decision that she, as a doctor, feels is most appropriate] Let’s keep our minds open about how we care for him on the ward. Nothing is set in stone. But we really must discuss what to do if something unexpected were to happen… if there is a sudden change… if his heart stops. If he has a cardiac arrest.

Mary: A heart attack.

Dr G: Yes. [the bleep vibrated again. But Laura knew she must not leave now. She knew that resuscitation would not, could not work. But the preceding conversation had drained her, had diminished her confidence, made her feel… bad. The harbinger of doom, destroyer of hope. She could not go on, not right now.] But let’s see how things go. He might respond. I think you should stay here Mrs Johnson, we may need to talk later.

Mary: I am staying. I am definitely staying. [and Laura felt that part of the reason Mrs Johnson wanted to stay was to protect her husband, from her, from Laura. God this was hard.]


 

The Hill – Episode 2/7, Mary’s view

 

“What Dr Green didn’t seem to know, when she started to speak to me, was that three months earlier we had been in the same department with the same problem. It was like deja vu. Same time of day, same department. Albert had a chest infection, he was gasping for breath terribly, and an older male consultant came in, a Dr Stanhope. He told us, with Albert barely able to take it in, that this was likely to be it. That he would probably die from the infection. Then he gave some instructions to his juniors and left.

“OK I thought, I can understand. He’s very poorly. But Albert held on through the night. They kept taking blood tests from his wrist, and at 3 in the morning he suddenly got worse. A young doctor was called, and he didn’t seem to know what to do. not so much what to do, but whether to do it. In the end he asked me, “Is your husband palliative?” I knew what he meant, that word was familiar to me, because Albert was already visiting the local hospice now and again – I was driving him there – we all knew it was an irreversible disease. But that night it wasn’t clear to me, or to the doctor, or the nurses, if Albert was getting ‘palliative’ care or not. The young doctor got his senior, a smart lady, a registrar, who agreed that in the absence of any definite plans Albert should go to the high dependency unit for a spell on a special mask that pushes air into the lungs. And he improved! Seven days later he was back on the usual ward. Another seven days later he was home.

“So when, after we came in three months later, this Dr Green started to talk to me about letting him die comfortably, I had to object. She wasn’t even prepared to give him a chance you see. That wasn’t right at all.”

 

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The Hill – Episode 1/7, In the Emergency Department


 

Welcome to the second series of short episodes on the Illusions of Autonomy blog. The Hill describes a ‘difficult’ treatment escalation and Do Not Attempt Cardio-pulmonary Resuscitation (DNACPR) decision. By ‘difficult’, I mean the process of reaching agreement with a patient and family who have not been engaged on the issue before, despite end-stage disease and multiple admissions. A common situation.

I have not presented an extreme example; no outbursts, no legal challenges. The Hill is supposed to be realistic in its complexity and its ambiguities. The effect of prior medical decisions on the psychology of the family is emphasised, and I hope true it is true in its depiction of how loved ones and medical staff can behave. It is an amalgam of the many conversations I have had during my career, but is nevertheless a fiction.

***

Dr Laura Green knew that Albert Johnson was unlikely to survive. As she entered the cubicle in the emergency department the gestalt was strong… A frail man, poorly nourished, breathless, the spaces between his prominent ribs sucking in and out with every difficult breath. Another exacerbation, the seventh this year according to the summary on his casualty card, but this one was different. His chest x-ray showed a large white patch. Infection, consolidation – pneumonia.

Next to him sat his wife, Mary Johnson, watchful, trained through countless previous admissions to observe the process and take note of who came and went. Laura sensed that something had gone wrong in the past. Some misunderstanding, an instance of poor communication or mis-management. There was a mountain of distrust to overcome here.  Laura explained her thoughts as to what should happen. Antibiotics of course, fluids, oxygen, but not too much in case it slowed down his breathing, and then wait… for the response.

Mary began to lean forward. This is it, thought Laura. This is where it went wrong before. The discussion about what to do next. Limits of care. Ceilings.

Having taken a brief history herself, having examined Albert carefully, having considered the background (‘5 steps’, the extent of his severely limited exercise capacity even when ‘well’), Laura had enough information. She had formed her opinion. If the antibiotics did not work quickly, if his breathing deteriorated further, he would not benefit from more intensive treatment. Mask ventilation. Intubation on the ICU, being connected to a machine. No, that wouldn’t be the right thing to do.

It was 11 o’clock at night. Albert was too fatigued to lift his head. His wife, alert but also tired, was the one who Laura would have to engage in this conversation. There were no letters, no forms, no evidence that this difficult conversation had taken place before.

From scratch then.

Laura approached the cubicle. Mary, it seemed, knew it was coming.

 

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The Miss, episode 7/7 – Doctor and patient

Patrick collected Elizabeth from the waiting room, opened the door to the clinic room and beckoned for her to take a seat.

“Thank you for coming Mrs Valtrey.”

She was thinner and appeared to have aged five years, though only three months had passed since the chemo started. But she was doing well, nevertheless. Patrick had seen the latest CT scan result. The tumours had not shrunk much. The decision of the multi-disciplinary team was documented in the notes – not for surgery. More chemo, for as long as she could take it.

“I didn’t expect to be sent an appointment Dr Elliot. I thought I was under the cancer team now.”

“Yes, we don’t usually have much to offer at this stage, but it’s good to see how you are getting on.” A pause. Elizabeth let the silence reign. He had asked her to come, after all.

“Actually, I have something I want to talk you about Elizabeth. Concerning the tests you had when you first came to see me.”

She let him continue.

“You had a blood test after you saw me, and it showed that you were anaemic. Mildly anaemic, but anaemic nevertheless…”

“Yes doctor. My GP Dr Atwal mentioned that.”

“Did she? Did she?” Patrick looked past Elizabeth towards to the blinded window. He wished he was on the other side. “Well you were anaemic at that time, but… I didn’t see the result of the blood test. I didn’t know you were anaemic.”

“And was that important?”

“It was. If I had seen that you were anaemic I would have, I’m pretty sure I would have, arranged a colonoscopy for you.”

Elizabeth understood immediately. In fact, Patrick’s confession did not surprise her. She had worked it out in her own mind, from scraps, looks, evasions. But larger concerns had pushed the need to hear it explained openly and honestly to one side. And now, here it was. The truth. The doctor continued,

“Elizabeth. It was my responsibility to see that result. I made a mistake. It’s very likely that if we had found the cancer when you first came to see me, it would have been smaller… and curable. We can never be sure, but it’s possible. I’m sorry.”

Elizabeth saw, briefly, an alternative future. But she banished it. It was useless. Harmful. Fantasy.

And anger. What of anger? No, it was too late for anger. Too late.

“Well I don’t know what to say Dr Elliot.”

And neither did he, now. How to close a conversation such as this? Like every other medical conversation. Constructively. With hope.

“I have made some recommendations, so that this does not happen again. From now on we are going to print out all the blood results on the letters automatically, with abnormal one highlighted, so that we, and a patient’s GP, are made more aware. It doesn’t help you, I know, but others… I hope.”

“Thank you doctor Elliot. That is good to hear.”

Her tone was rather automatic. He feared Elizabeth was just being polite. Making him feel better.

As he drove home that evening, he realised that he did feel better. It had cost him, yes. Saying sorry always costs something. But it was the only way forward. Elizabeth might well go home and report the conversation back to family, sons, daughters, and who knew what would come of that? For Patrick this meeting was the only way.

Even now, it was about him.

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The Miss, episode 6/7 – Doctor and conscience

Dr Ellliot had much time to think, to rationalise, to excuplate, to self-criticise.

Face it – her cancer wouldn’t be incurable if I had arranged an earlier colonoscopy. That’s the basic fact. If I had looked up the blood test I would have seen the result, and I would have requested the colonoscopy. I can’t get away from that. She’s going to die and it was avoidable.

Why didn’t I look it up? Why? Because in my mind, when I saw that letter, I had an image of the patient… and I remembered, I thought, there’s nothing wrong with you. Belly ache. One of the hundreds I see every year with belly ache. Cancer wasn’t even on my radar. I had no concern. I was lulled into… I had closed my mind to the possibility. Stupid. I sent the test. I must have sent it for a reason, surely. Why send it otherwise? Why do something and fail to check it? It was my responsibility, wholly mine.

Why cut myself up about this? This one oversight is nothing compared to the thousands of patients I have looked after well. All the cancers I have caught early. Other conditions that I have diagnosed through careful assessment, perseverance. Knowledge. I know I’m not bad at this. I am not a bad doctor.

But for Elizabeth Valtrey, I was bad. I dropped the ball.

Should I tell her?

Will it help her? Not materially. But surely she is owed it. That blood result was sitting on the system for nine months and no one saw it. It’s got my name on it, the one who ordered it. It was for me to see it…

Here I am, killing myself with guilt, but Daisy was right, the system did not help me. Nor did the GP. She knew Elizabeth was anaemic, but she didn’t tell me. I suppose she assumed I’d look at everything, leave no stone unturned etc etc… does she even know what the clinics are like? The pressure to turn patients around. It’s all my fault. And if I front up to her, it will look like it’s all my fault. Oh yes it will. And if there’s an interested son or daughter, some lawyer type, if they get to hear about it… dread to think what they will do. Years of stress. It will make me a less good doctor. Is that what anyone wants, really?

Is this about me, or her?

Well this is my mind. My fear. My future. Her life, her blood… her trust that I would do a proper job.

It’s gnawing away at me. It’s time to move on. Confront it, or turn away and leave it to sink under the sands of time. Will it sink? Or will it remain, a dark monolith on the plain, blotting the view, drawing my attention?

Shall I tell her?

 

 

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