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.

 

 

***

 

BOOKS! – click here to explore on Amazon

 

Advertisements

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.

***

BOOKS! – click here to explore on Amazon

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.

***

BOOKS! – click here to explore on Amazon

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.

***

BOOKS! – click here to explore on Amazon

The Choice, episode 3/6: Trainee

 

Not all the trainees that came to work with Jessica, now 47, were good. One, Helena Banks, appeared incapable of concentrating for more than forty-five minutes, and had such a ‘direct’ medical approach she habitually missed clues given by patients. Despite all the training, she had not developed any real sensitivity to non-verbal signs, nor an engagement with the emotional side of the job. In Helena, Jessica saw something of her own approach in the early years, when she focussed overmuch on finding pathology, rather than seeking to understand the patient’s response to disease and helping them manage it. Yes, you needed to be a diagnostician, but once the disease, if found, had a name, you had to carry on, and remain engaged. Well that was Jessica’s idea of being a GP.

They met, as trainee and supervisor, and Jessica found herself getting increasingly annoyed. Helena had no insight. She thought she was doing pretty well. Jessica described her observations and how she thought Helene could improve. It didn’t go down well, but nevertheless Helena agreed to try to adopt some of the approaches suggested to her.

The following week Jessica supervised a morning list. A 36 year old father came in. He had been complaining of stomach pain for three months. After three visits, another GP had arranged for him to have an endoscopy at the hospital. All clear. Good news. And here we was today, coming for more advice. Jessica knew this man’s story. He had lost a child to a rare tumour three months before the pain came on.

Helena read through the report. She actually used the words, ‘Good news!’ Nothing wrong here. Sensitive stomach. Nothing more to do. She wasn’t rude, she wasn’t too fast, but she missed the point. It was all related to the man’s bereavement.

Jessica let Helena continue, and watched the poor man leave. As Helena moved to call in the next patient Jessica intervened. She needed to talk. Now.

Helena looked unimpressed by her trainer’s insistence that she should have delved more deeply into the man’s story. What was happening at home? Were there other children? Did the family receive counselling? Was there anything more that could be done? The pain was a manifestation, surely, of the tragedy.

But Helena glanced out of the window.

Is there somewhere you need to be! Jessica almost shouted. She knew now, Helena could not do this job properly. It was time for someone to tell her. She responded only to the most direct approaches.

“Helena. I think I should do the rest of this surgery.”

“Why?” Animosity there.

“You’re… I’m not sure you have taken in what we spoke about the other day. About looking under the surface…”

“You’re saying I’m not a good GP.”

“I’m saying there’s still a lot of room for improvement, outside your diagnostic skills. We can work on it further… but sometimes, it’s necessary to stand back and ask yourself… would you really enjoy a career in this type of medicine? You are still very early on and have options…”

“You think I should give up?”

“No. But I think you need to consider carefully, it’s your entire working lifetime…”

But Helena knew what Jessica meant. And Jessica, having said goodbye to Helena for now, looked up at the ceiling and blew out through pursed lips. God, that was hard.

Only later, during the last consultation, did it dawn on Jessica that she done to Helena as Jeremy Stackson had done to her. Blown her off course. Her words had been delicately silvered, her delivery more thoughtful, but the message was the same. You’re in the wrong game here. You don’t have the equipment. It’s time to leave.

Hard words in a hard world.

***

BOOKS! – click here to explore on Amazon

The Choice, episode 2/6: Presentation

 

Ten years later, when Jessica described her route to partnership in general practice she did not dwell on that early ambition to be a surgeon. It was almost a cliché; too tough, too competitive… not compatible with life, la la la. Perhaps it hadn’t been a true ambition, more a flirtation. GP was a positive choice. And she was good at it. In fact, her ongoing engagement with hospital-based specialties had drawn her into a role at the Clinical Commissioning Group, where she was helping to develop strategic targets for local surgical development. She was 37.

But… but, she found herself wondering now and again, what would it have been like to plan those operations, to revascularize legs, deal with aneurysms? Not to put too romantic a spin on it, to save, directly, the odd life. The operations in which she had assisted fed her self-confidence and encouraged her to aspire. Other consultants had praised her. Until… Stackson.

Was it weak to have been pushed off course so easily? Did her decision to change the direction of her career reveal an underlying psychological weakness? These reflections only intruded when correspondence bearing his name, so redolent with arrogance, crossed her desk. For Jessica’s Practice lay just within his hospital’s referral area.

And now, look, another type of correspondence… a proposal to the CCG that it commission a novel, high-tech vascular intervention. Driven by him; J Stackson.

Given her interest in secondary care innovation, the surgical services committee chair had passed it to her for comment. For her decision, in effect.

Goodness! What goes around comes around. The circle of life.

There was to be a meeting. Stackson would be giving a presentation.

How old must he be now, Jessica wondered. She was 27 back then, he must have been what, mid-50s. So he was now in his 60s and not that far off retirement, she guessed. But still active, clearly. Still innovating. A force of good perhaps, overall.

She vowed to keep an open mind

*

If Stackson did recognise her, he showed no sign. They shook hands before the committee took seats, he made eye contact with her, as a key decision maker, during the presentation, thanked the committee for its attention, and left.

Then came the discussion. Jessica could not approach the weighing up of costs and benefits dispassionately. Stackson’s voice was echoing in her mind. She dwelled on those tones and inflections, samples of which she remembered hearing during that terrible dressing down ten years ago.

It came to a vote. She voted emotionally but tried to rationalise it. Yes, the proposal was a good one, but… leadership. That department’s track record, under Stackson’s direction,  was not quite… collaborative enough.

“I find too much duplication with similar services in the region,” she said, quietly. The unspoken reservation understood by her colleagues was that the proposal was mainly reputational. The Trust needed this service to be on a par with other vascular units. But the community didn’t.

Stackson’s proposal was rejected.

***

BOOKS! – click here to explore on Amazon


The Choice, episode 1/6: Ward round

 

 

This series was going to be called ‘The Insult’, but one of my favourite authors (Rupert Thomson) has already taken that title. The Choice is about a female doctor who experiences a severe knock to her confidence from an insensitive, bullying consultant. It spans five decades, jumping a decade between each episode. An alternative ending owes something to The French Lieutenant’s Woman. This is fiction, and a stretch for the writer, because a) I am not a woman and b) I haven’t been seriously undermined like this, but it is based on observation and I hope there is some psychological verisimilitude.

 

*

 

Jessica Paley, 27, a surgical registrar in her second year of specialist training, turned up at 7.30 AM to prepare for the 8 AM ward round. She updated the list of patients, checked the results of recent investigations, and rehearsed the ‘headline’ with which she would summarise the condition of each to Mr Jeremy Stackson, consultant vascular surgeon. He had a reputation for high expectations and a short fuse; he was, Jessica suspected, essentially an old-fashioned male chauvinist, though he was probably very nice to his wife, if he had one. Jessica didn’t know. She didn’t much care. She had seen flashes of venom (including an impatient sulk while he watched her sew a femoral-popliteal bypass recently – too slow, it seemed) but she was confident that she knew how to navigate around the sharpest rocks.

The ward round went well, until they entered the penultimate bay. Jessica spotted the frail, pale old man before Mr Stackson did. She recognised the smell of ischaemia, of black extremities, of urgency. Stackson turned to Jessica,

“Who is that?”

“I… I don’t know.”

“Who admitted him?”

“I… he wasn’t on my… I wasn’t informed.”

The nurse in charge of the ward, Dennis, appeared, nervous himself having missed the larger part of the ward round.

“I do apologise Mr Stackson, this patient was transferred overnight from East Cleverton, apparently you had accepted the referral. He needs a fem-fem crossover, the notes he came with say.”

“And has he been clerked?” He was looking at his SHO.

Jessica felt the base of her gut contract and chill.

“No Mr Stackson. He hasn’t… I wasn’t…” But he wasn’t either; wasn’t interested. A tide of annoyance that had been rising through the morning, perhaps through the last two months, now broke in a wave of invective. His volume followed an upward gradient.

“Disorganised! The whole firm. He’s been in hospital how long, eight hours? and none of you have seen him, its UNACCEPTABLE…”

“I’m sorry.”

“I don’t want apologies. I want an efficient, safe, team Jessica. My entire list now has to be reorganised, to fit this man in tomorrow. You’re clearly not in control, after two months, you’re not in control. Transfers are your responsibility. This is surgery. You are way too passive for… for this.” He flung his arm out to indicate the ward, but he meant this specialty, this life, this future… Jessica knew exactly what he meant. As he moved towards the frail man’s bay, he muttered, as though trying to control himself but only partially succeeding, “For God’s sake, get a GRIP!

Stackson saw the patient and made some decisions. After he had left the ward, Dennis tried to comfort Jessica with words like ‘everyone sees that side of him once…’ and ‘It’s not you, it’s the department…’ but Jessica stopped him. “Why didn’t you tell me there was a transfer? Nobody told me. I been here since 8 o’clock, I could have clerked him.”

Dennis had no explanation.

That night Jessica made a decision. Surgery was not for her.

***

BOOKS! – click here to explore on Amazon

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.

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.

 

 

Click here to explore books on my Amazon author page

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.

Click here to explore books on my Amazon author page