Uncategorized

Signature

 

What explanation can there be for a surgeon to write his initials on a patient’s liver? It sounds bizarre and disrespectful. This almost surreal, alleged event is sub judice, and I know nothing of the people involved or any details beyond what was in the papers, but perhaps it exposes some interesting psychology.

In the medical specialties that require practical skill, especially surgery, you work hard to become expert. Over the years the movements of the hands and fingers become practised and slick. Operations that appear impossible to the lay-person or junior trainee become routine, yet each patient is different. Each procedure presents its own challenges, hiccups, sudden recalibrations and extempore solutions. At the end of a particularly difficult case, when the patient appears stable and safe, you might sigh with relief, but also experience a surge of pride on a job well done. Congratulations are hard to come by in medicine. The job well done should be the norm, after all. But looking down at the organ, structure, or vessel that now pulses healthily as a result of your dexterity, you might be forgiven for thinking – ‘I did that!’

To mark a job well done with your initials is appropriate in other walks of life – in art and sculpture, in literature, in architecture. The artist owns the piece. A part of them, their skill, their creativity, their experience, lives within its lines.

Can medical procedures be regarded as art? Yes, I would say. The long facial reconstruction, the painstakingly re-joined finger, the delicately implanted heart valve… in the fine skill and seamless results it is easy to identify the hallmarks of the inspired artisan, the committed artist. Perhaps it is understandable that a surgeon who comes to see the results of their skill as art feels the urge to sign it.

However, it is a living body that we are talking about here. What lies under the skin is sovereign to the patient. They will carry it around with them for the rest of their lives. They were born with it. It is wholly theirs. (In the case of a transplanted liver of course, it belonged to another. The act of altruism and donation makes it worthy of even greater respect.) Perhaps that is the line that may have been crossed here – the distinction between what a surgeon can claim to ‘own’, and what is and will forever be sacred to patient.

Advertisements

Birthday party

Lonely birthday by Stephen Davies


It was time. After a week in hospital Mrs G, in her late 80’s, had failed to improve from a chest infection. Her frailty meant that the chances of making it out of hospital were shrinking. We were duty bound to discuss resuscitation. I knew what I thought: there was no way it would work. Before we entered the bay, I asked the team what they thought – all agreed. Was that their true opinion, or where they just following my lead? All one can do is ask. I looked to the senior nurse. She agreed too. It was not a difficult decision, medically. “By the way,” said the nurse, “It’s her birthday.”

            I approached the bed space. Mrs G was drowsy, but a hand on the shoulder and gentle rock caused her to wake. She had all her mental faculties, full ‘capacity’, as we say. I knew already that there were no family members living nearby. I started in the usual way, with a brief examination and review of the latest blood tests. Then I prepared to deliver my line – ‘I thought we should talk about what might happen if you get worse… if your breathing or your heart deteriorates… there’s a chance that your heart could stop suddenly… it’s called a cardiac arrest…’

            Her thin arm lay outside the sheet, and I glanced at the name band. The date and the month… today. There were no cards, no flowers. I paused. Was she even aware? “It’s your birthday,” I said. “Yes,” she replied, in a neutral tone. It had no significance for her. Birthdays are only as special as the people around you.

            Images of her as a young girl waking up in a state of excitement, 80 years ago, entered my mind. The juxtaposition between youthful health, optimism, a life not yet lived, and present reality… was stark. My words, formally raising the prospect of death, would symbolize the end of the dreams and ambitions she had nurtured. Perhaps most were fulfilled. I did not know.

            “Well, happy birthday anyway,” I muttered. She smiled weakly. We moved to the next patient. The tasks we had set ourselves – agreeing limits of care, completing a DNACPR form – were incomplete. “Not today,” I said to the team. “Not today.”

 

***

[Patient details changed.]

From the front

 

Victoria, a new consultant, pushed for the procedure. It was, as they say, a ‘multi-disciplinary decision’. A consensus had been reached and the views of all those involved was clearly documented, but it was Victoria who made it happen. She had seen that Mr S. would go nowhere until a decision was made. Due to the complexity of his situation (a chronic disease with a rare complication), touching several specialties, there seemed to be no leader in his management; no overall owner. So, Victoria, who had met Mr S. several times and felt that she knew him quite well, decided to ‘own’ this episode of care. Through emails, corridor chats and a couple of cameo appearances at specialty meetings, she brought Mr S. to the eve of the procedure.

It was performed rarely, in any hospital, and Victoria, being no surgeon, did not know exactly how it was done. Nevertheless, the surgeon who agreed to do it (reluctantly, she felt) was known to be an expert. There was risk; how could there not be, given the complexity, and the proximity of the pathology to the brain? But the surgeon would explain this while obtaining Mr S’s informed consent. Not that Mr S. had much choice. To do nothing would see him die of the complication at some point in the next 12 months.

Victoria went to see Mr S. on the morning of the procedure. She didn’t see it as her business to delve into the risks, and she knew that Mr S. had given his consent already. A porter was waiting by the nurses’ station with a piece of paper in his hand asking which bed Mr S. was in. It was time for him to go to theatre. So, with the porter circling the bed, Victoria wished Mr S. well and promised to see him in a couple of days. Not tomorrow; that might be a bit too soon. Mr S. nodded. His smile was not full. Victoria got the impression that he had more knowledge of the procedure than she did.

Victoria walked away feeling pleased with herself, for steering her shared patient through the Byzantine processes that can seem to slow the progress of patients in the NHS. Mr S. was getting what he needed, at last.

Next day Victoria headed straight to clinic. She was too busy to think about Mr S. At lunchtime he crossed her mind. He would probably be in the ICU now, recovering; or, if everything had gone very smoothly, on the specialist surgical ward. Over lunch she looked him up on the computer. Yes, still in ICU.

On the way to her afternoon commitment she ran into the surgeon.

                “How did it go?” asked Victoria, brightly.

                “Didn’t you hear?”

                “No. What?”

                “He stroked out, massive embolus came off the aorta. The whole left cerebral hemisphere is swollen, the neurosurgeons had to do a craniotomy overnight.”

                “But he’s…”

                “Alive, yes, but there may not be much…” He tapped his temple.

                Victoria stepped back, and leaned against the wall.

                “Are you OK?” she asked of the surgeon.

                “Me? Yeah, fine. Tiger country, you know, that sort of operation.” He walked away, unflustered.

Victoria was distracted all afternoon. Her body language was automatic, her responses generic. She knew it would not be helpful to anyone for her to visit Mr S. He was being looked after well enough.

On the way home, through the blurred background and streaky lights visible from the train window, she saw Mr S’s future. It was nothing like she had imagined. It was not what she had promised him.

Now she regretted her assertive approach. It was due to her negotiating the blocks, driving the reviews, nudging the co-ordinators, that Mr S. had been listed for surgery. Her prints were all over this process. She felt responsible.

The residual weight of that responsibility, a leaden blanket, slowed her down as she walked home from the station. Her husband asked what was the matter, and she explained. He, a non-medic, saw it another way. There had been no wrong done here. The operation was indicated, all were agreed. It was bad luck… a final bit of bad luck compounding a life afflicted by bad luck. Victoria nodded and smiled. Yes, that was the rational approach.

Because Mr S’s clinical needs had changed, Victoria had no ongoing role in his management. Other patients displaced the acute concern she had developed for him. His name appeared in a morbidity and mortality meeting, but his ‘outcome’ generated no controversy.

Later, long after he had died, Victoria met other patients who needed strong advocacy from someone to take their management forward. Sensing that these patients were entering territory full of risk, Victoria did what was required of her, offered her opinions, and contributed to the consensus. Although the speed of decision-making was often slow – or deliberate, a better word – she was comfortable with that. She did not push things forward. Let management plans evolve at their own pace. Byzantine processes have developed for good reasons. Sure, there might be occasions where she needed to lead from the front and make things happen – in those areas where she was the acknowledged expert – but in other circumstances, from now on, she would go with the flow.

The edge

There isn’t time to go into every complaint in a typical clinic. There just isn’t. So, however open my initial question (‘How are things?’), I narrow down to the important matter quickly. Most patients understand this, and tacitly agree to drop other concerns. It sounds like bad medicine; it is certainly non-holistic, but it is real life. If symptoms unconnected to the condition that brings a patient to the clinic are explored for too long, less time will be spent pursuing the potentially dangerous diagnosis. Therefore, patients receive little more than sympathy and a recommendation that they had ‘better see your GP about that.’

Sometimes patients insist though. When this happens, it is necessary to find the language that combines genuine interest (after all, to dismiss something that causes anxiety is just rude) and skilful management of the time-limited interaction. However, if despite the nuanced nods, silences and redirections, the primary issue continues to be relegated to the background, less subtle tactics are required. Perhaps, ‘Sorry Mr ______, we really should concentrate on what your GP wrote to me about,’ Or, ‘I can tell that’s causing you some real problems, but I’ll have to ask your GP to refer you to another clinic…’

Recently, I found myself in this situation. I had finished examining the patient and was sitting at the desk, looking at x-rays and blood results, trying to work out what tests to arrange next. From the couch my patient returned for the third time to an irrelevant (to my mind trivial) complaint. Filtering his words ruthlessly while I concentrated on the most efficient path to a final diagnosis, I mumbled something half-hearted and non-committal. There was a pause. He rose from the couch and said,

‘Oh, forget about it then.’

The sharp edge to his words pulled me out from the clinical, impersonal space into which I had fallen. One rarely hears such a tone. I saw that I had been rude. I turned in the swivel chair and back-pedalled desperately,

‘No, it’s important! Sorry! Have a seat. We need to think about how you can get it sorted…’

Gradually, the consultation was retrieved. Left as it was, the encounter would have gone the way of many hospital appointments – into the ‘he/she barely listened to me’ category. We discussed the other matter, and I promised to do something. He left content (I think, I hope). The appointment overran. But I owed that, for losing sight of what mattered to him, and steering too close to the edge of a precipice down which trust can easily be lost.

Click image to explore books

Reputations: the light and the dark

‘Light in the darkness’ by Pat Cegan

 

A recent thread on Twitter brought up a subject that is really spoken about. Elin Roddy kicked it off with a comment that patients admitted to nursing homes should routinely be engaged in conversation about their preferences towards end of life. With habitual frankness, she later commented that there is a danger that those working in hospitals who are more willing and able to do this, run the risk of gaining a ‘reputation’. Others confirmed that they had indeed become known in their Trusts as being prepared to discuss resuscitation and sign DNACPR forms.

This is something that has bothered me for a long time, being one of the self-acclaimed “willing”. What if a doctor acquires a reputation as being comfortable with the fact that their patients might die? Might that realism be construed as nihilism? Might they come to be regarded less as a saver of life, but rather an usher into the next? Uncomfortable!

Doctors lie on a spectrum. Some cannot bring themselves to consider the possibility of death, and continue to propose active treatment even when the patient does not seem to be responding. Others readily identify signs and symptoms indicating that life expectancy is limited, and are prompted to initiate a (sometimes) difficult discussion about end of life care. Some move across different points on the spectrum, but it is quite possible that they feel at home near one end or other.

If a doctor actively seeks the signs of imminent dying in the belief that they will save patients the burden of futile treatment, there is a theoretical danger that they will fail to recognise opportunities for saving them. A doctor on the other end of the spectrum may identify ‘survivors’, and during their career may be credited with helping to save patients that others would have ‘given up’ on. However, in doing so they will probably push more patients through periods of aggressive and ultimately futile treatment. How many ‘failures’ it takes to justify one ‘success’? This sounds like an overly cold and impersonal way of looking at things, but it is a justifiable metric. In my recent paper on DNACPR decisions, I cited a study by Paniagua et al, who found that ‘29 octogenarian patients with cardiac arrest have to be treated with CPR to net one long-term survivor’. That ratio doesn’t look good.

As a patient, do you want your doctor to be the one who looks for any chance to cure, or who accepts that death is sometimes inevitable and changes their approach swiftly if things are not going well?

Of course, it all depends on clinical context, and on your wishes. However, in the 8th and 9th decades, when physical frailty is significant, comorbidities sometimes numerous, and mental capacity variable, the assessment very much depends on the doctor’s perception. Their instinctive position on the aforementioned spectrum may make a big difference.

They may be influenced by the type of patients they tend to see; their case-mix. A palliative care doctor will spend his or her days looking out for signs of terminal deterioration, and (almost by definition) will not be looking for opportunities to commence heroic new treatments. The elderly care physician will try to balance the burden of curative or preventative treatment against the realistic benefits. In my specialty, hepatology, I see patients in their third and fourth decade who look as though they are going to die in the next week or two (usually from multiple organ failure as a complication of cirrhosis). But, being young, they might pull through if we keep supporting them in the ICU. The reward, survival, seems to justify any cost – long weeks in ICU, months convalescing. But the price (not mine, the patient’s) to pay for failing to recognize that organ support is not working, and carrying on with fingers crossed just in case there’s a ‘turnaround’, is a prolonged death attached to multiple life-support machines.

Negotiating optimism and pessimism in these situations is difficult, and as I described in a recent case report, fluctuations in clinical condition that result in changes of tack on the part of the medical team can result in what looks, in retrospect, like vacillation. This goes to show that few of us are comfortable in diagnosing dying, and, especially in younger patients, will always choose life-prolonging/saving treatment if there is a chance, however small, that it will work.

There are other, perhaps less noble, drivers to continuing with aggressive treatment in the face of apparent futility. Perhaps a patient’s management is being led by another consultant or team, and it does not feel right or comfortable challenging their decision. Perhaps the underlying disease is well outside my expertise, and I do not feel confident commenting on the likely disease trajectory. Perhaps the team treating a patient are known to be therapeutically aggressive, and are bound to take suggestions that they should rationalize treatment badly. Perhaps I have seen too many patients die recently, and just want a good news story…

In my view, as a doctor who is generally comfortable and accustomed to recognizing futility, we must be careful not to lose the ability to see glimmers of hope, even if those glimmers are not apparent until the murky surface presented by illness is scratched away by a period of active, optimistic treatment. As long as we are able to admit defeat when things are going wrong, and brave enough to explain that to our patients or their families, it seems reasonable to sit on the optimistic end of the spectrum most of the time.

In this way we might witness recovery against the odds, feel good about, and use those cases to motivate and enthuse our teams. At the same time, there is no harm in being known as a realist who can identify the signs futility when they begin to accumulate, and who is willing to change direction even if that means pushing against the prevailing wind.

***

 

An illustrated history of truth in medicine

Who isn’t completely honest with patients?

Memorial Medical Centre after Hurricane Katrina, New Oleans

Some years after Hurricane Katrina (2005), I read an excellent book, Five Days at Memorial by Sheri Fink, about the alleged actions of medical staff who looked after patients in the flood-stricken Memorial Medical Centre. They were accused of administering sedatives and opiates with the intention of hastening death, i.e. committing euthanasia. Immobile, comorbid and very dependent patients in the Lifecare facility stood no chance of being evacuated via the helipad, and as conditions deteriorated in the heat, they began to suffer. The details and follow up to this investigation can be read here.

 

Emmett Everett, died in MMC and found to have non-prescribed sedatives on board at post-mortem

This was about more than words, obviously, but the scenario of doctors administering drugs without their patient’s knowledge, ‘for their own good’, led me to investigate the history of truth in medicine. I spoke on the subject to a meeting of the West Kent Medico-Chirurgical Society, and this essay is based on that talk.

 

Route to the helipad, MMC

 

#

We start with an ancient story: Arria, a Roman woman, regularly visited her husband, Caecina Paetus, who had been imprisoned by the emperor Claudius. During this period, their sick son died and was buried, but Arria chose to hide this information from her husband – to spare him the pain. Pliny wrote that when she felt the sadness begin to overcome her in his presence, she took herself away so as not to reveal the truth.

 

Arria and Paetus. Later, he was ordered to kill himself by Claudius, but could not do it. So Arria took the knife, stabbed herself, cried ‘Paetus, it does not hurt’, and died. He then carried out Claudius’ sentence on himself.

 

An early example of deception for the (perceived) good of another. And a behaviour that may be relevant to doctors and nurses who sometimes know a great deal more about the details of their patients’ condition, and their likely fate, than their patients do.

 

Antiquity to industrial revolution

Hippocrates

The fathers of medicine saw a place for withholding truth. In the ‘Decorum’, dubiously attributed to Hippocrates [460-370BC], it is written,

Perform your medical duties calmly and adroitly, concealing most things from the patient while you are attending him.

 

Galen

 

Galen [130-210AD] described ‘δειλός’, the state of fear and anxiety about ones health that should be avoided as much as possible.

Arnald de Villanova [1240-1311], a Spanish physician, stated,

Arnald de Villanova

Promise health to the patient who is hanging on your lips,

but once you have left him say some words to the members

of the household to the effect that he is very ill;

then if he recovers you will be praised more…

 

Page from ‘Chirurgia’

And the famous surgeon Henri de Mondeville [1260-1320] wrote, in his treatise ‘Chirurgia’,

He should promise a cure to all his patients, but not conceal the danger of the case, if there is any, from the family and friends…

 

 

500 years later however, the words of Samuel Johnson [1709-1784] were reported by Boswell,

Clearly he supported full disclosure, mainly due to personal experience.

 

Thomas Percival

Manchester cotton factory

In the early 19th century Dr Thomas Percival was asked to help settle a dispute between apothecaries, physicians and surgeons at the Manchester Royal Infirmary. Percival had done great work in analysing bills of mortality and improving working conditions in the cotton mills.

In 1803 he published ‘Medical Ethics, or a code of institutes and precepts adapted to the professional conduct of physicians and surgeons’. Appearing to err on the side of protective optimism rather than painful honesty, he wrote,

‘A physician should not be forward to make gloomy prognostications, because they savor of empiricism… the physician should be the minister of hope… It is, therefore, a sacred duty to guard himself carefully in this respectm and to avoid all things which have a tendency to discourage the patients and depress his spirits.’

 

Manchester Royal Infirmary, opened 1755

 

A little later, 1849, the American physician Worthington Hooker [1806-1867] wrote ‘Physician and Patient, or, a practical view of mutual duties, relations and interests of the medical profession and the community’. In Chapter XVII, titled ‘Truth in our intercourse with the sick’, he writes,

 

Worthington Hooker

 First, It is erroneously assumed by those who advocate deception, that the knowledge to be concealed…would be injurious

Secondly, it is erroneously assumed that concealment can always… be effectively carried out.

Percival’s Medical Ethics

Thirdly, if the deception be discovered or suspected, the effect upon the patient is much worse…

Fourthly, the destruction of confidence… [has] injurious consequences to the persons deceived

Even though Hook was beginning to challenge the tendency to conceal, individuals assumed that deception was an intrinsic medical skill well into the 20th century, as this 1927 quote  from Collins demonstrates,

‘the longer I practice medicine, the more I am convinced that every physician should cultivate lying as a fine art’

 

 

Nuremberg and autonomy

By the mid-20th Century, everything had changed. Under the Nazi’s, medicine was consumed by evil. Dr Karl Brandt [1904-1948], Hitler’s “Escort Physician” and latterly Commissioner of Sanitation and Health, oversaw a systematic euthanasia programme, and  widespread medical experimentation. Looking at his fresh face at a gathering of the elite in Berchestgaden, it is still difficult to understand how doctors such as he, trained to heal, could have drifted so far into the moral swamp. He was tried at Nuremberg and hung at the age 44 (having previously been sentenced to death by the Nazis for helping his family escape from Berlin to surrender before the city was overrun).

Nuremberg

 

Karl Brandt, on trial and in his pomp

 

From Nuremberg emerged principles, the Nuremberg Code, that guide us today. These include, as regards medical interventions,

  • The voluntary consent of the human subject is absolutely essential…
  • …exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion…
  • should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him/her to make an understanding and enlightened decision.

 

The last one is key. For consent to be valid, the person, or patient, must know everything. Consent, in this context, is a corollary of autonomy, probably the stoutest pillar in the ethical framework that doctors refer to on a day to day basis. Tom Beauchamp and James Childress, working in Healy Hall, Georgetown University, Washington, wrote Principles Of Biomedical Ethics, containing the now familiar touchstones:

Autonomy – The right for an individual to make his or her own choice.

Beneficence – The principle of acting with the best interest of the other in mind.

Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.

Justice – A concept that emphasizes fairness and equality among individuals.

 

 

Two judgments

Respect for autonomy requires full disclosure of the relevant facts, so that patients can make an informed decision. This seems simple. Yet, even today, we sometimes struggle with it.

The case of Janet Tracey, about which I have written on this blog before, is an example. A doctor issued a DNACPR notice without, in the opinion of the judge, offering in a meaningful way to discuss it with her.

He said,

“On occasions when I attempted to initiate discussions with Mrs Tracey regarding her treatment and her future she did not want to discuss these issues with me.”

 

The Tracey family outside the High Court

 

The argument, that in this case it would have been cruel to press her to discuss the subject, did not wash. In fact the judge doubted that the doctor had tried as hard as he said.

‘In the absence of any documentation and in the light of what is known about Mrs Tracey’s view on the issue of resuscitation around the time of the first Notice, I am unable to accept Dr ______’s evidence that he spoke to Mrs Tracey about resuscitation prior to the implementation of the first DNACPR Notice.’

And in his summary, the judge said,

‘It may well be that such a concern also caused him to spare her a conversation which he knew was likely to cause distress to a suffering patient.’

‘…doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them.’

So, the opinions of those wise men who favoured concealment of harsh truths have been challenged, and overcome. Now, especially towards the end of life or the context of surgical procedures, it is clear that full disclosure is required. To do otherwise is rarely justified.

 

Sam and Nadine Montgomery

 

The Montgomery case has further nuanced our approach to providing information. Nadine Montgomery agreed to a vaginal delivery, even though her baby was large compared to the mother (who was diabetic, a risk factor for having larger babies). The baby became stuck in the birth canal and suffered a brain injury. The Supreme Court found that the risks of vaginal delivery in this particular case had not been explained adequately, and that if they had Ms Montgomery would definitely have opted for a Caesarean section.

The judgment, which is fascinating to read, includes a critical reference to the Bolam case, which was one of  the precedents on which consent use to rely. Under Bolam, doctors had to say as much as a group of peers in similar circumstances would generally have said (this always seemed quite a circular argument to me).

Furthermore, because the extent to which a doctor may be inclined to discuss risks with a patient is not determined by medical learning or experience, the application of the Bolam test to this question is liable to result in the sanctioning of differences in practice which are attributable not to divergent schools of thought in medical science, but merely to divergent attitudes among doctors as to the degree of respect owed to their patients.

The judge then emphasises the need to tailor the information they give to the individual,

This role will only be performed effectively if the information provided is comprehensible. The doctor’s duty is not therefore fulfilled by bombarding the patient with technical information which she cannot reasonably be expected to grasp, let alone by routinely demanding her signature on a consent form.

Many say that good doctors have been discussing risks with their patients like this for years anyway, and now the ‘law has caught up’. But we can see how a tendency to paternalism, to partial transparency, has grown from the historical instinct to withold information. There may still be exceptions. In emergency scenarios, where the patient is vulnerable, or cannot focus on the facts, and decisions must be taken, doctors are quick to fall back on ‘best interest’ thinking. This requires an objective assessment of what is best, and a rapid discussion within the team (often led by the clinician, who will tend to drive the direction of travel). As the figure below illustrates, with increasing urgency the amount of information, and therefore the degree of autonomy permitted, may reduce.

 

 

These situations place a great power, and burden, in the hands of decision makers. It is essential that outside these ‘lifesaving’ situations, clinicians revert back to the habit of sharing information, and ensuring consent is truly informed. As we know from the good Dr Hooker’s third observation on the matter of truth – ‘if the deception be discovered or suspected, the effect upon the patient is much worse…’. Nowadays, that effect will result in more than suffering for the patient, but a professional or legal challenge to the doctor in question.

 

 

***

 

Picture credits:

Route to the helipad – diagram of hospital taken from ‘5 days at memorial’

Tracey family, copyright Roland Hoskins

Emmett Everett – from CNN interactive website

Others – commons license

 

Further reading:

I became interested in this subject, having found myself ‘spinning’ prognostic estimates in the intensive care unit, whether consciously or unconsciously, while speaking to relatives about the best way forward. In a paper, ‘Sophistry and circumstance at the end of life’ (Pubmed abstract), I explored language choices made during these discussions. For instance, a 95% chance of dying sounds bad, and seems to meet the standard for futility; but choose to present that as ‘a 1 in 20 chance of survival’, and it doesn’t sound so hopeless. Doctors may use language differently according to their therapeutic agenda.

In a second paper, ‘The witholding of truth when counselling relatives of the critically ill: a rational defence’ (PDF), I reviewed some literature on the subject of truth-telling, and explored how being less than frank about poor prognosis can sometimes be justified.

The literature regarding truth in medicine is extensive, and this paper by Catriona Cox and Zoe Fritz is a good introduction with many helpful references.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In my day

Reading about the situation at Derriford hospital, where two doctors found themselves responsible for over 400 people, I thought about my own training in the 1990s. Before you slap the computer shut or throw down the phone, I should say that although there is a fair amount of ‘in my day’ reflection here, it is not my intention to promote a ‘just get on with it’ attitude.

Back in the 90’s few if any junior doctors thought about challenging potentially dangerous staffing levels. If we turned up to the hospital on a Saturday morning to find that we were one doctor down, we steeled ourselves for a nightmare and hit the wards determined to fight the fires as they arose. If people died, we attributed their demise to disease, not to a paucity of doctors. Overnight, in the large hospital where I started work, two JHO’s and one SHO* managed all the medical wards and all medical admissions after seven o’clock. The Registrar went home at ten. The consultant was not seen until the 8AM post-take round. That was just how things were. It seemed hard, it felt threadbare, but we did not complain.

Our perspective was centred on our own experience, not that of the patients. As the sun rose to brighten the night-blackened windows after a non-stop night, and the nurses handed over to the early shift, we congratulated ourselves for having responded to the many calls, requests and emergencies that had arisen. The euphoria of finishing the shift counteracted any misgivings we may have had about sailing too close to the wind at times. We felt like heroes. In the pub, we spoke about working in ‘warzones’.  We weren’t happy with it, and the hours before a series of weekend on-call shifts could become heavy with foreboding, but we managed.

If a patient deteriorates during a period of sub-optimal staffing, it is very hard to link their outcome with the number of doctors available. The sick get sick, that is why they are in hospital. Doctors are good at focusing their time and energy on those who need it most, so of those 400 and more patients in Derriford, perhaps twenty will have required urgent medical assessment and a new management decision over an eight or twelve-hour period. The stable majority were looked after by nurses, who could alert the doctors to any signs of deterioration if they developed. It is rare for two or three patients to get acutely ill simultaneously, such that a doctor cannot physically be with a patient during an emergency.

But what if that does happen? A doctor might have to run away from one patient before he or she has sorted them out, to see another one who was just deteriorated. If there are only two doctors, and six simultaneously sick patients, it would appear that a difficult choice has to be made, and the least deserving will go neglected. This is extremely rare. When the alarm goes up, other colleagues (anaesthetists, outreach teams, even orthopods) emerge from the ether. The system stretches. The need is met. So at the end of the day, nobody seems to suffer. There are no ‘serious incidents in which the root cause is felt to be under-staffing. And the patients… they would have had no idea the team was a doctor or two down. So what exactly is the problem?

Well, there was risk. There was probably delay in seeing patient, and perhaps some associated morbidity – but none that could not be measured or proven. And the doctors, for all their coping ability, were strung out, and felt vulnerable. The price to pay for a system running at full stretch is the potential for disaster, stress, a poor learning environment, disillusionment and ultimately burnout. Yet many of us saw this during our training, and said nothing. We were in the problem so deeply, we didn’t see it as a problem. Or perhaps we didn’t have the ability a look up and gain a broader perspective.

Today junior doctors are more vociferous, and, in certain circumstances, more militant. The industrial action that took place last year was the clear example of this. Unsatisfactory staffing levels and training opportunities are now challenged. They do not regard those difficult shifts as a heroic challenge, but as failures of the system which they, the doctors, have a responsibility to highlight. This involves informing management and pressing for locum cover, providing feedback freely and without fear through GMC surveys and empowering their BMA representatives.

Why the change? I think junior doctors are more mature nowadays. Many have competed degrees before entering medicine, or have pursued different careers. They may be more independently minded. As a 24-year old in my first teaching hospital, I was grateful to have been selected for a ‘good’ post. I saw the challenges ahead in terms of my ability to meet them, to avoid failure however steep the learning curve… not to question the organisation itself, or the wider political environment. Therefore, during those years when I worked to the limits of my ability in understaffed areas, I did not complain. I did not seek to improve patient safety by making a fuss. I was, in a way, complicit.

Old attitudes don’t fall away easily. When I hear about an understaffed shift now I worry, and I sympathise, but a hard part of me thinks, ‘They’ll manage. They always manage…You know, back in the 90’s…” etc., etc,, yawn, yawn.

The future requires doctors like me, who appear to have grown older and perhaps a little cantankerous, to recognize that what was once acceptable is no more, and that without fuss, there is no change.

*JHO, junior house officer – first year post-qualificiation; SHO – senior house officer – 2nd or 3rd year post qualification

 

Think like me

Last week I delivered a lecture about resuscitation decisions. Part of it was a scenario, carefully thought out with my co-presenting colleague. We described a lady in the 80s, living in a residential home, with a degree of heart failure and some other co-morbidities, who had been admitted with pneumonia. There were markers of severity indicating a 20% risk of death. In this scenario she deteriorated overnight, and was found ‘barely conscious’ and in respiratory failure.

We asked the audience to put up their hands if they thought the patient should have a ‘do not attempt resuscitation’ (DNACPR) notice. I was amazed to see only around 15% of the audience put their hand up. Then we asked if they would consider a ceiling of care, for instance non-invasive ventilation or, all the way to intensive care and mechanical ventilation. Most felt that non-invasive ventilation on HDU would be the appropriate limit of intervention. But I couldn’t get over the small number who would have started to discuss resuscitation status at this stage. Why didn’t they think like me?

This scenario was deliberately “grey”. We didn’t want to make it obvious that the patient was dying, for instance with terminal cancer or end-stage heart failure. But we wanted to describe a patient who was not improving. In my mind, having considered the case carefully before the lecture, the fact that she was to deteriorating despite antibiotics meant that if her heart did suddenly stop, the chance of surviving would be very small indeed. Advanced life support might temporarily restart the heart, but would not reverse the problem, which was pneumonia. It seems clear to me. Why not to my colleagues?

Could it be that I was wrong?

Probably not, in terms of the evidence base around prognosis and resuscitation. My colleague and I had reviewed the studies. We could show that a successful outcome was unlikely. So I came away asking myself, why the discrepancy?

I had had the benefit of thinking about this case in detail, for a few days. Those who had just heard the scenario were like doctors in the acute medical units, who are presented with a new patient’s details and required to make big decisions a few minutes later. It doesn’t feel comfortable, or right. Perhaps that was the issue. How can you make what seems like a ‘life limiting’ when you’ve only spent 10 minutes with the patient?

Or perhaps they judged that the hypothetical patient had more of a chance than I did. Perhaps, if the heart was restarted (assuming too that they would then be admitted to ITU for ongoing ventilatory support), continued antibiotics would overcome the infection and she would recover. That seemed like wishful thinking… but who would criticise a doctor for grasping at that possibility, however small?

Or perhaps, I reflected, I have developed too gloomy outlook. I am too ‘realistic’. So interested have I become in identifying futility and ensuring that patients do not undergo CPR needlessly, I am unable to recognise therapeutic opportunities anymore. How else could my opinion different from the majority so starkly?

But I know that this is not the case. I am careful always to make sure that I have not overlooked an opportunity for improvement, or cure. So is the problem me or them?

The answer can only be – neither. They are good doctors; I think I’m a good doctor. We disagree. And in this disagreement is revealed the essence of uncertainty, the unknown quantity that doctors deal with every day. If a room of individuals interested enough in resuscitation to attend a lecture cannot agree on the right course of action, how can we expect patients or their family to offer a firm opinion, or agree with our suggestions?

This point was brought up by someone in the audience. He said that we should not be surprised when families disagree with our assessments, if a group of ‘experts’ cannot be certain of what the outcome is likely to be. And faced with disagreement, we must not allow ourselves to see them as opponents in a debate whom we must win over. However sure we are of our opinion (having had the benefit of dwelling over the results of investigations, the output of prognostic models, or just plain experience), to walk into a room and bring around an anxious family to that point of view is probably naïve. The situation is being revealed to them with the same suddenness that it was revealed to the colleagues on that lecture theatre. The natural instinct is to defer judgement; to assume that there is a chance of survival that should be pursued with active treatment. Only in the most clear-cut cases, where death is visibly progressing or an underlying disease has clearly reached its culmination, can we be fully didactic.

So at the end of it all, I remain confident that I can identify patients for whom CPR would be futile, but at the same time I realise, if I had not before, that opinions will frequently differ. For both doctors and families, time is needed for the facts to be explained, for their implications to sink in, and for the resulting reaction to mature. This cannot always be done in ten minutes, or on Day 1.

***

Click picture to explore stories, books and other projects

 

Batteries are low: the work of engaging in DNACPR discussions

During a talk I gave to an audience of palliative care specialists two weeks ago (St Barnabas Hospice, Worthing, thank you for having me), I wondered how they found the energy to engage patients in discussions about dying all day, every day. The comment was undoubtedly naïve, because that’s not what they do, and the many positives that come from managing dying well must recharge the batteries. But for those like me who work in the acute hospital setting, and whose job it is to recognise the approach of dying, a form of exhaustion can occur. Sometimes this leads to missed opportunities.

Imagine a typical ward round in general medicine, or even within a narrow area like my own (liver disease): there might be three new patients with clinical features to suggest that rapid deterioration could occur at any time, which on a background of chronic disease or frailty indicates that resuscitation would be futile. It is my job to start a discussion about the place of CPR and escalation of care. Three conversations. Take a deep breath.

In the ideal world, where patients with chronic disease talk about their wishes well before admission to hospital, the door would already be ajar. Perhaps a documented plan (eg. ReSPECT, described in this week’s BMJ, UFTO, or UP*) would be produced from an overnight bag, or from a relative’s pocket. This paper, a symbol of prior reflection, would allow us to compare their goals with the facts of the situation.

It’s 9.15AM. The team is full of energy and caffeine. We have X patients to see, some of whom are on the road to recovery, some of whom have already been recognised as dying, some of whom have uncertain futures.

The trainees are attentive. They are learning how to do this (aren’t we all?). First patient. I complete my assessment, pause, then open the discussion. I won’t rehearse the words here – my version is not perfect, and it varies. If it does not vary then it shows I am just repeating some learned lines – an impression that it is important to avoid. (Interestingly, a patient involved in the BMJ’s article commented, in reference to a particular form of words, it was ‘as if this is what they had all been taught to say.’)

So I open the patient’s mind to the possibility of dying (be it suddenly or gradually). Perhaps their next of kin is present. They react in their own way. A faraway look is not uncommon. Sometimes a film develops over the eyes, glistening in the morning light of the nearby window. Poetry has no place here, but as a human, I am affected by the impact of my words. We reach an understanding – we agree – CPR is not the right thing to do. If the patient or a relative disagrees, we park it, and arrange to speak about it again, later. I walk away, unsure how to close the interaction. A hand on the arm, a swish of the curtain (‘or would you like me to keep it closed?’). There is no comfortable way, to be honest.

Outside the bay we complete the DNACPR form – put the bureaucratic stamp on it, for the benefit of others who might be called to see the patient in an emergency.

“Ok. Where to next?”

We see a couple more patients. Then the registrar says, “We probably need to discuss escalation with the next one, she’s —–.” We review the history, the data, and agree, yes, we need to anticipate the worst, even if, crossing fingers, it doesn’t happen during this admission.

I use subtly different words, but move in the same direction. This time there is a more overt reaction. And a longer discussion. The thought of dying has never crossed her mind. Nor her husband’s. Part of me brims with anger – she has an incurable, gradually worsening condition, she has been seen by her GP and in specialist clinics umpteen times over the last year; why has no-one brought this up? Why does it have to be me, now? I could just leave it. She might not deteriorate after all. Why not leave it until she does… but if that is at 3AM, and a foundation year doctor is asked to see her, and she refers to a registrar who has never met the patient, there will be hurried decision making, the patient will probably not be conscious enough to express their wishes, an ICU consultant will be asked to make a call based on scanty information…  bad medicine. It must be done now.

We finish. It took half an hour. Not long in the life of the patient, relative to the magnitude of the subject under discussion. But very long in the context of a ward round. Never mind. The time must be taken.

We see some more patients.

Then we come to the third.

I enter the bed space. The visit proceeds along routine lines while I make a general assessment. Then I reach a fork in the path. Now is the time to level with them. But I am not up to it. I have left two patients in mute distress (possibly; how could it be otherwise?). I have re-formulated the words to keep them fresh and sincere and specific to them. I have struck a balance between brutal realism (I’m not one for drawing a vivid picture of CPR, but the act has to be mentioned) and sensitivity. I have asked myself, as we continued our progress along the ward, ‘am I bring too pessimistic here? If the other doctors they saw didn’t bring up dying, perhaps I shouldn’t either…’) – and I make a decision. Not today. Another day. Let’s talk about it on Wednesday. I haven’t got the energy. Or I’ll ask to the registrar to do it, she’s good.

“So are they still for resus?” asks the nurse.

“Yes.”

“What if they deteriorate?”

“We’ll cross that bridge when we come to it. Sorry.”

And so we move on, hoping that the worst doesn’t happen before we find the time and the energy – a very specific form of energy – to broach the subject.

 

 

* ReSPECT = Recommended Summary Plan for Emergency Care & Treatment; UFTO = Universal Form of Treatment Options; UP = Unwell and Potentially Deteriorating Patient Plan. According to the BMJ this week, In Torbay, where Treatment Escalation Plans were introduced to replace DNACPR forms in 2006, ‘30% of elderly patients now arrive [at the hospital] with a TEP.’

 

~~~

Books! Click to explore…

When death is not the end

gazette

This week’s report about a nurse being disciplined for failing to ‘revive’ a clearly deceased nursing home resident, has caused consternation. According to the description given, the woman was ‘yellow, waxy, almost cold’. But a rule mandated that the nurse on duty should commence basic life support and call an ambulance. For her to be punished seems perverse*.

The big fail here is not so much the rule (which is to maximise safety and ensure that no opportunities are lost to reverse acute deterioration), but the fact that the woman did not have a community DNACPR order. Such an oversight could be written about at length, and the difficulties doctors, families and patients have discussing the subject have been explored on this blog.

The other problem this case reveals is our general confusion about the transition between life and death. There is a phase in dying, perhaps fifteen minutes (longer if hypothermic – I am happy to be corrected) where vigorous efforts to restart the heart might result in more life and acceptable cerebral function. For this to happen, the heart and other organs need to be in reasonable condition. If death was sudden, re-opening a coronary artery might be all that is required. But if the patient had been ailing for a year, or succumbed to a spreading cancer, nothing will work.

So, when a nurse or a member of the public comes across a seemingly dead person, what tells them whether it is right to start basic life support, or respectfully cover their face? If the situation is at all unclear, it seems there is only one defensible answer – try to resuscitate.

When I did Advanced Cardiac Life Support training years ago I was fascinated (and disgusted) by a paragraph in the manual that described situations where resuscitation was clearly inappropriate. These included decapitation and separation of the body into two halves (sorry to make you queasy, that’s what it said; I’m not sure if the current version still includes this). It may have mentioned rigor mortis. But it did not talk about the ‘waxy’ or ‘almost cold’ person.

Faced with such ambiguity, people are quick to refer back to earlier times, when community doctors or wise neighbours were called to see people in their homes, whereupon they calmly observed that the patient had died and that there was nothing more to be done. Now, such acceptance can only occur if, prior to death, there has been a series of clear discussions and agreements (all documented) regarding resuscitation, transfer to hospital, or escalation of care.

This has come about because modern medical techniques can do much to delay death. The burden of heroic interventions has to be considered of course, hence the need to think about such things before they happen. However, the medical reflex is to treat and save. The reflex applies to all people by default, even those who appear too frail to benefit. Thus, the nursing home has a ‘reflex’ that patients found unconscious and without a pulse should be rushed to hospital unless there is a DNACPR order in place.

This evolution in our ability to preserve life has diminished the validity of the experienced nurse’s, or lay-person’s, impression. He or she is no longer trusted to recognise established death. In the case reported this week, the diagnosis of death was, presumably, only valid if made by paramedics, or by the A&E doctors who might have received her (intubated, cannulated, perhaps with intraosseous access lines protruding from both shins).

There is an argument that only those who have been trained to certify death should be allowed to bear the responsibility, and it is interesting to note that the nurse in this report has subsequently received such training. However, a part of me wonders how it is that death, which has been part of our experience since homo sapiens began spread across the globe, is still such a mystery that one needs to go on a course to recognise it.

Most ward nurses, or trainee doctors who have led a crash team, will have been in a similar situation. From a doctor’s point of view – the crash call goes out, you run to the ward, and observe nursing colleagues performing basic life support. Collateral information soon paints a fuller picture – the patient was last seen alive four hours ago; they were ‘stone cold’ when the nurse came to routine observations at 6AM; clearly, the patient died peacefully in their sleep. But, in the absence of a DNACPR order, a crash call had to go out. As the medical registrar you must now decide whether to call the resuscitation attempt off immediately, or continue for a few minutes just to make sure that there is no return of spontaneous circulation (a heartbeat and a pulse). Most doctors in this situation continue until they are sure the patient is truly dead, as they will not have known the patient and do not feel confident in stopping the attempt immediately. Some of the reasoning here is defensive. You could be criticised for saying ‘stop’ without having gone through the algorithm.

It seems to me that there is still a place for the healthcare worker’s common sense opinion, especially if they know the patient – ‘She has died, let’s ring the next of kin… no, don’t call the ambulance, don’t start compressions. They have died.’

Recent BMA/resuscitation council guidelines do, to some extent, take such ‘common sense’ into account –

…there will be cases where healthcare professionals discover patients with features of irreversible death – for example, rigor mortis. In such circumstances, any healthcare professional who makes a carefully considered decision not to start CPR should be supported by their senior colleagues, employers and professional bodies’. [see previous post on this here]

Despite this, and even with the support of medical colleagues, while nurses feel vulnerable to censure, only those with great confidence will risk not calling the crash team when they find a dead patient.

 

* We have very few details, so the arguments and conclusions drawn from the case here are generalised

***

 

bookletamazonCover

 

book4coverfinal