Compassionate care

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.’

 

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Curators of compassion

e_radiation_01bb_bm-copy_905Mechanical medic, by Ben Mauro (concept art for the film Elysium)

 

 

“When I was hospitalized for multiple cancer surgeries, it was my #nurses who provided the compassion many of my doctors lacked.” – a Tweet I saw this week.

 

Why is this? Do doctors not care?

 

The question was brought into focus by two things recently. A nurse consultant reminded me, after a talk I had given on the difficulties in finding time to understand the personal histories of alcohol dependent patients, that it’s not all about the doctors. Their job, if they are personally unable to sit down and explore what makes people tick, is to ensure that others do. They need to manage the service such that qualified and skilled people are around, like specialist nurses. This seems self-evident, but it reveals a truth. Doctors, especially consultants, are not necessarily best placed to act as the conduit of compassion or understanding. They are there to make the right medical decisions, to prioritise aspects of care (according to the patient’s needs and goals, obviously), and to help keep the whole team functioning. But, frequently, it is not they who are the face of kindness.

 

The second reminder I had was a very lovely thank you letter from a patient who needed an operation, and who was in pain every day, but did not tick the usual boxes for jumping up the waiting list. I helped to nudge and negotiate the bureaucracy such that her operation was brought forward, although it was by no means a single handed effort. Once on the ward I barely saw her. Her daily struggles were dealt with by trainees and nurses. Yet, when it was all done and she felt better, she wrote to me praising the whole team for our caring attitude. Some of this warmth reflected onto me, as the senior clinician. Yet I know I did not have the opportunity to show compassion, personally. All I did was organise stuff. That contributed to the positive outcome, and the perception of compassion.

 

As a consultant, you must get used to not being on the ward to demonstrate those human qualities that helped drive you to become a doctor in the first place. Depending on the job structure, you might go round the wards every day for a week, and have the opportunity to develop a rapport with patients. But then, when connections has been established, you disappear, into the land of clinics or other duties. The patients, who grew to know you and recognise your face, must now establish new connections. Or, you may do ward rounds in a more old fashioned model, making executive decisions, giving direction to the team, but only twice a week (a vanishing arrangement!). In that model your window for demonstrating compassion is very brief. You might try to pack all of your caring and empathic instincts into an interview with the patient, trying to achieve a good understanding of what needs to be done (especially important, say, a dying patient), but then… you are gone. You delegate the implementation and ongoing communication of the plan to the team. If there are problems, they will negotiate the hurdles and come back to you if they are insurmountable. That is delegation, a necessary art.

 

You may go off to do some other things, of no less value – perhaps administrative, managerial, educational or academic, but not ‘patient-facing’. Overall, that non-clinical work will contribute to better care, perhaps even a more compassionate system (the result say, of making a business case for more trainees), but it must be accepted that seniority is likely, over time, to reduce your role as a direct conduit of compassion.

 

So, if patients being discharged reflect that they ‘barely ever saw’ their consultant, it is worth remembering that their care was supervised and overseen by them, and that the (haughty? – never) individual who floated through the ward once or twice was once, possibly, quite good at sitting by the bedside and making the time to understand. Possibly.

 

 

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Speed and compassion – the necessary juxtaposition

speed

 

Should a doctor feel guilty, or be criticised, if a patient walks into the consulting room and leaves four minutes later? (I think my record is two, if I am honest.) If I see a patient on a ward round and spend no more than three minutes by the bed, I do ask myself – on walking away – ‘where was the quality in that?’ Where was the care?

A typical day is peppered with such rapid patient-doctor interactions. The decisions made are about drugs, results, tests – the purely ‘medical’ side of medicine, and the information shared purely factual. However, every article one reads about patient-centred care elaborates on the work required to make a connection, to understand the patients’ concerns, to develop empathy, to truly understand in order to truly help. This complex process cannot occur during a fleeting visit. Nor even a series of visits. The fact is that much of medical interaction is devoted to algorithmic decision-making in response to the physical manifestations of illness. There is accuracy, there is safety, there may be ‘quality’, but there is little evidence of active compassion.

Behind each verbalised physical complaint there may be a flurry of unspoken anxieties. Those anxieties may be disproportionate to the severity of the illness (a 25 year old with food poisoning who worries they might have cancer for instance), but that lack of proportion is obvious only to those who know, the medically initiated. It is just this sort of patient who is likely to receive a very short visit on a ward round. Unless you ask, you won’t find out how deep their unease goes. So why not ask? Why not explore? There isn’t enough time. It is efficient medicine. It is fast medicine. Is it bad medicine?

Imagine the alternative. The universally compassionate doctor, intent on giving each patient a full opportunity to interact and expose those niggling concerns that would otherwise remain hidden and fester, might spend a good 15 to 20 minutes with each on a ward round. There may be 25 people to see. 15×25m = 375 minutes. Over 6 hours. That is unfeasible. Even 10 minutes (the average time spent per patient in a study on the use of a checklist, and a threshold mentioned in a Royal College of Physicians report) would result in 4 hours without a break – which is a stretch.

A junior doctor on a five hour ward round will become tired and lose focus. They will become anxious that there are only so many hours left in the day to complete the list of tasks. There will be less time to check blood tests at the end of the day, more jobs will be handed over to doctors unfamiliar with the patients, scans will be requested after the shutters come down in radiology. A consequence of spending more time at the bedside may be a sense of hurry away from it. There is a place for speed, it seems.

Most would agree that not every patient requires 15 or 20 minutes. Many patients expect nothing more than a quick update. If they have come in with a chest infection they may wish to know nothing more than the diagnosis, the treatment plan and the estimated length of stay. Others will require far more, and will not reveal their fears, or the impact that the illness is having on their lives unless time and space are provided and a degree of trust has developed. The experienced doctor may anticipate their questions. They may even coax them out, or formulate them, based on what he or she has seen before.

But speed is addictive. Everybody likes speed. It makes the place look efficient; it makes people happy. If the ward round can be wrapped up before lunchtime there may be time for relaxation and chat. The important administrative or multi-disciplinary meeting can be attended on time. If a clinic finishes promptly the nurses in outpatients will congratulate you.

The danger of developing a speed habit is that the default approach becomes little more than a fly-by, a surface skim, such that the visual or verbal clues indicating the patient needs more time are missed. This habit explains the experience of many – the worried or confused patients who ‘barely sat down before he closed my notes and discharged me,’ or those who report that their doctor ‘barely looked up from the computer.’ So how can one be fast and compassionate?

To achieve speed without leaving a trail of patients with unresolved questions and unvoiced anxieties, adequate time must be given to those who need it. The only way to do this is to be fast with those who can take fast (the simple cases and the easy cures, the untroubled, inconvenienced patients who are as anxious to leave as you are to move on), while remaining ready to slow down when the situation demands it. This requires a doctor to be adept at judging the deeper needs of their patients, and a willingness to step out the fast lane for a while.

Bed X – an explanation, not an excuse

bedx

Earlier this month Dr Kate Granger closed the NHS Confederation annual conference with a powerful speech. In it she described being referred to by a nurse as ‘Bed 7’. These two syllables seem to embody uncompassionate care. ‘Bed’ represents all that is awful about hospitalisation, apart from the illness itself. It represents horizontality, frailty, powerlessness and diminished autonomy. It brings to mind the issue of resource, the perennial pressure on beds, and the ‘blockers’ that cannot be housed in the community after they have recovered. And the number, ‘7’, shows how people can become just one of many on the conveyor belt of sickness…a chore, a passing burden…in the minds of those who have forgotten what it is to act with compassion. Then, reflecting on this simple phrase, I realised something – I have may well have committed the same crime.

Can there be any excuse for referring to a patient by their bed number? The following, if not an excuse, may be an explanation.

When I started work in an A&E department I was immediately reminded of the days and evenings I had spent working as a waiter. The comparison seems trivial, but there are real similarities.

As a waiter I received a seemingly never-ending series of requests, backed up by the additional pressure of my customers’ variously expressed frustration or annoyance. I had to decide who should be served first, or who should have their order taken next according to how urgent I thought their need was. Sometimes an unexpected piece of information would arrive which would lead me to prioritise one table above another even though they had taken their seats half an hour later (they had to get to a show, for instance). This might involve debasing myself before the (typically) knife-wielding chef, trying to convince him to let a table jump the queue. Sometimes a problem in the kitchen would force me to go and explain what had happened to the customers, while trying to avoid apportioning the blame to my colleagues. My mind would be teeming with parallel problems, but the hours would pass quickly and by 1 o’clock in the morning the room would be empty, the tablecloths thrown in laundry bins and the tips divided. Then, having eventually gone to sleep while the adrenaline was still subsiding, I might dream about tables, or tumbling forks, or I might see myself holding six plates, unable to move, glued to the carpet, while customers clamoured for food and shouted at me.

So, if we can accept that something as unimportant as a couple waiting for their steak can be compared to a sick patient waiting to be assessed in A&E, other similarities come to mind.

Just as table numbers dictated my movements in the restaurant, in A&E the code by which I organised myself, or was organised by the nurse in charge, related to cubicle numbers. Until I met a patient for the first time they would have no name. Their back story was unknown to me, they were no more than an item on a list, a set of notes in a tray. And until I met them for the first time their ‘handle’ was just a cubicle number. I would have read the initial triage assessment, I would be formulating an approach in my mind, but it would all be under the heading of simple, impersonal number.

Standing outside the curtain, as I responded to questions about other patients, I would signify my intention by saying, “Yes, but I’m just about to see cubicle 9.” If this was overheard it might have sounded insensitive. Sometimes, I am sure, it was overheard. But surely no-one would expect a health care worker to use the term to a person’s face!

It is conceivable that a health care worker might forget to dissociate the person they are just about to see from the label with which their mind has been ‘handling’ them. Perhaps, in an environment where the patient is new (such as A&E), such a slip, such thoughtlessness, might be forgiven. But for the patient on the ward who has already been in hospital for several days, and who has demonstrated that they are a whole person, and who is known to staff, such an error is less understandable. But for some staff the patient will be new. They may have just returned from a three day period off duty, and during handover the name, in the absence of the context of human contact, may not have displaced the easier label…the bed and bay number.

What is familiar to the nurse or doctor, through their many days on the ward, is the patient’s location. In much the same way I knew the floor plan of my restaurant. My allocated sector for the night might include tables 9-18. I would immediately associate table 11 with that difficult approach around the foot of the stairs, or the tight squeeze by the potted palm, while laden with full glasses and plates. The bed number is not just a number, it is a location that the nurse has worked around for days and nights on end. It means something to the nurse, but it means nothing, of course, to the patient.

This (quite possibly flawed) analysis of human behaviour can only serve as an explanation, and is not an excuse for a lack of compassion. The thing that should stop the doctor or nurse translating a mere label into human communication is an understanding that the patient will be hurt by being referred to in such impersonal terms. This requires just a moment’s reflection, reflection that should become habitual for someone working in health care, but a moment that might, possibly, be squeezed out by the pressure of work. Or by laziness. Or by dehumanisation. But it only takes a moment.

(And by the way, if the unfamiliar nurse were to say ‘Hello, my name is…’, the trap would immediately be avoided.)

 

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The good in him

heartblack

This post was inspired by two things – a talk at our hospital by Dr Umang Patel, Paediatrician and Clinical Transformation Lead at Aviva Health UK, during which he mentioned the ‘noble paradox’ where, to put it simply, good people end up doing bad things; and a paper ‘Culture, compassion and clinical neglect: probity in the NHS after Mid Staffordshire‘ (Journal of Medical Ethics, £) by Newdick and Danbury, in which the reasons why doctors appear as reluctant now as they ever were to report poor practice, are explored.

As ever in these fictions, I try to examine at a micro-psychological level, why doctors behave as they do. I do not presume to present a full or validated explanation.

oOo

Dev had always taken an interest in wider aspects of medicine; he had enjoyed epidemiology and public health modules at med school, he was tempted by the new focus on leadership in medicine, he looked at systems and wondered how things could be done better. After the Francis report, he asked himself, ‘What will I do if I see poor or uncompassionate practice?’ He did not know the answer to this, but knew that he would not ignore it if there were persistent or egregious examples. After all, hadn’t he read that ‘between 120 to 150 doctors must have known something was going badly wrong at Stafford Hospital yet few raised concerns through the proper channels’*

A few weeks after starting work as a Foundation Year doctor he became aware of a particularly uncaring nurse. She was abrupt with the confused patients, and scolded them occasionally. It was shocking to hear, but no-one else seemed to notice. Her manner did prove effective, as those she admonished tended to settle down and desist (for that shift, anyway). Dev was aware of no complaints, but, mindful of recent lessons learnt, promised to stay alert and take the uncomfortable step of reporting her, to someone, if things got worse. He would start by discussing it with his registrar. Perhaps today. He and the registrar had just completed a ward round, and Dev was being given his directions for the day.

“So that’s your mission. Get Mrs Wilkinson transferred. She’s been waiting over a week, the bed managers are on our backs, she’s getting tetchy. Spend a while getting the story straight in your own head, try to get through to the receiving team’s registrar and explain why he, or she, needs to expedite things at their end.”
“I’ll try. There’s lots to do for the other patients too.”
“That’s the trouble, we always have sicker patients to focus on and no-one has the time to devote their energies to situations like this. But today, let’s do it. I’m in clinic, but call me if they give you any grief.”
The registrar left, leaving Dev to contemplate tactics. It wasn’t such a bad day really, the in-patients weren’t too sick, there weren’t too many outliers. He walked into Mrs Wilkinson’s bay and touched her on the shoulder, waking her up.
“Mrs Wilkinson, it’s Dev, the doctor. Just to say, we’re going to pull out the stops today, try and get the transfer sorted.”
“I’d be so grateful. I know it’s not your fault, but I’ve been achieving nothing for the last week. I’m worried I’m going to have another attack before I get there, and be too unwell for them…”
“I’ll do my best.”

As Dev left the ward his consultant was walking in; she took him to one side.
“Dev, I’m sorry, but we’ve been singled out for being so efficient! Two clerking SHO’s have called in sick and they’re short down in the AMU. I had to put my hand up and say we were pretty much under control…and I volunteered you for a shift. Can you stay a bit over today, as the clerking shift runs to 8PM. And come in late tomorrow. OK?”
“Errr…OK, fine. Mike asked me to get something done urgently, might take an hour…”
“I’m sure that’s OK. If you could get down there by 11.”

Dev called the tertiary team. The necessary scans had not come through, so they had not been reviewed – hence the delay in the transfer. Dev was told to get them across straight away. He didn’t know how, but he would find out.

In radiology he waited patiently for an administrative assistant to come off the phone. The hospital to which they were referring Mrs W was not part of the usual network; the scans would need to be burned onto a disc and sent in the post.
“No way. That’s not acceptable I’m afraid. Can’t they be couriered?”
“We don’t do that here. Your department will need to arrange that.” Dev began to bristle. A familiar feeling of frustration began to build. The assistant told him in more detail what he needed to do. Two signatures, on a special form. His consultant, and the department manager…And the forms? We have them down here!
“Thanks. Will you burn the disc now?”
“I’ve got a load to do…look at this pile of requests!”
“Mine’s urgent.”
“They’re all urgent young man.”
The assistant left her desk to fetch him the form. Dev took his own request from the bottom of the pile and slipped it in higher up. He recognised the writing on one of those he had demoted; it belonged to a housemate.

Getting the scans away was just the first step. He would then have to tell the tertiary team that they were on the way, encourage them to seek the package, upload the discs, make a clinical decision, and get back to Dev with their final determination. His bleep went off.
“When can you get to AMU Dev?” It was the on-call registrar, who had been given his name as a volunteer.
“Soon. Soon.”
He plotted a course through the hospital: consultant’s office (or was she in clinic?), manager’s suite on the eight floor, back to x-ray to pick up the disc, then the post room, where, he assumed, couriers were arranged once all the paperwork was complete.

Dev began to run. He laughed at himself – it’s not even a crash call…it’s a package!

In the stairwell a physiotherapist was taking a stroke patient up a few steps. Dev waited patiently for space to appear by their side, and when it did he leapt forward, with precision. But three floors up he encountered the same situation. He waited again, then jumped forward. The toe of his trailing shoe clipped the patient’s walking frame, and knocked it from the step. The physio compensated, taking the patient’s full weight.
“I’m so sorry!” said Dev.
“Careful!” she retorted.

Dev collected the first signature, then ran down up a further two floors. Three people stood at a turn, blocking it, doing nothing. Dev paused, excused himself, excused himself again, then nudged past. One of them looked up. Dev saw that he was holding a map of the Trust, labelled in Hindi. Dev knew the language, but he looked through the paper, into neutral space, pretending not to have perceived the truth of the situation – that this family were lost. He ran on. Still so much to do. He obtained the second signature, the package itself, and by ten past eleven the slim parcel was waiting for the motorcycle courier. He rang the registrar in London, and was told to ring back at 4.45PM exactly. Later, and the registrar would be in the afternoon round-up meeting.

The welcome Dev received in AMU was effusive.

At 4.40PM the alarm on his smartphone reminded him to extricate himself and get to a Trust phone. As he walked through the AMU, busy now, always busy at this hour, a patient called out to him. It was 4.42PM. Dev approached the bed space. An old man leaned forward, confused but distressed.
“Water.” he asked. There was water on his bedside table.
“Water.” He had water. But he needed someone to put it to his lips. 4.44PM. “I’ll tell the nurse.”
He got to the nurses’ station. The phone was being used by another doctor. At 4.45PM it became free. Dev grabbed it. A nurse moved behind him, and Dev turned to alert her to the patient’s need for water. The operator of the other hospital spoke, and Dev focussed on the main task of the day – the transfer. As he waited for the registrar to respond to the bleep, Dev saw, through a glass partition, the family of the thirsty patient arrive. He watched as they fussed over their father and exchanged unhappy looks. Dev turned his back to it, embarrassed by his small omission.

It all worked out. Mrs Wilkinson’s case was discussed in the round-up meeting, and her transfer was agreed for the following day.

That evening four families shared their experiences.

An Asian family spoke about the rude doctor who ignored them on the stairs. It’s the little things like that, the father explained, that make a hospital’s reputation.
A physiotherapist, over her pint, talked about one of the good looking House Officers who was getting too self-important nowadays. He has been quite kind when he started, she recalled.
The son and daughter of a very elderly man asked how it was, in this day and age, that a thirsty patient could wait forty-five minutes before being given a drink. They had found him desperate, parched, and had held the cup and straw to his grateful lips on their arrival.
And Mrs Wilkinson, when her relatives arrived, described how Dr Dev had taken it upon himself to make all the arrangements, how he had refused to let it slip any further, how ‘personal’ didn’t even come close, and how nothing could beat the NHS.

When Dev next saw the impatient, seemingly uncompassionate nurse, he watched her work. She was working hard. He didn’t much like her manner, and knew that someone needed to have a word, but he looked back on some aspects of his own behaviour the previous day, and thought – ‘Who am I to criticise?’

oOo

* referenced in the Newdick and Danbury paper, from ‘Annual Accountability Hearing with the General Medical Council. London, House of Commons Health Committee, HC 1429, Session 2010–12: para 42’ Link

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Singular histories, common needs: replacing the LCP

broken-bridge

Image from Creative Uncut website

The Leadership Alliance for the Care of Dying People published its interim report just as I was beginning to wonder what had become of the urgent changes set into motion by Baroness Neuberger’s report on the Liverpool Care Pathway. Those of us outside the specialist palliative care community but deeply involved in the care of the dying (ie. nurses, hospital specialists and general practitioners) are not privy to the day to day developments behind the scenes. Since the LCP was withdrawn, its commendable intentions besmirched by association with CQUIN payments and isolated poor practice, patients have continued to die. We presume, we hope, that they have died in as much comfort, and with as much dignity, that health care professionals were able to provide.

The conclusions of the Leadership Alliance have been anticipated to some degree. Prominent critics of the LCP fear that the current exercise is no more than ‘rebranding’. Professor Pullicino, whose presentation to the Medical Ethics Alliance in large part set the ball rolling, has been quoted as saying,

“The fact is that little seems to have changed, including the use of syringe drivers, anticipatory prescribing, use of sedation and narcotics and limitation of hydration and nutrition by a ‘best interest’ team decision.” The Neuberger report accepted that these aspects of care had an important place in palliation, so it seems extremely unlikely that the Professor’s suspicious attitude to them will percolate into the Leadership Alliance’s proposals.

Not missed

Do  I miss the LCP? Strangely, for one who regretted its withdrawal, the answer is no. I realised this a few months after the Neuberger report was published (by which time many trusts had stopped using it), and had to ask myself why. My conclusion  – effective protocols make work* for those who follow them, and when any protocol or treatment pathway is withdrawn, other business rapidly fills the space. The LCP committed clinicians to a degree of engagement with the needs of dying patients, and its sudden absence (without a replacement) may allow those caring for patients to move along more swiftly to the next. I have no evidence that care for the dying has suffered since the LCP was withdrawn, but know that I, personally, am spending less time on the little things. This may be for want of structure. The LCP, with its spaces for daily nursing and medical entries, with its reminders to check those aspects of bodily comfort that might otherwise be overlooked, served to draw us into the dying patient’s passive sphere. The pathway imposed on us, but ensured that we dedicated the time that was required to maximise comfort. In its absence we have the fundamental aspects of palliative care (which are not complicated, after all) to guide us, and in many Trusts some bridging guidance or condition specific approaches have been developed, but we do not have an instantly recognisable, well rehearsed approach. There is much to be said for the common language and mutual understanding that the LCP generated between doctors and nurses.

The semantics of protocols and pathways

What was the LCP? According to Neuberger,

 ‘The LCP provides alerts, guidance and a structured, single record for doctors, nurses and multidisciplinary teams that are inexpert in palliative care.’

However, it seemed to become more than that – a deterministic force,

‘…the LCP is being perceived by some of its users – doctors and nurses – not as a document, nor as a guideline, but most frequently as a set of instructions and prescriptions, that is to say a protocol.’

The authors then explore the concept of the pathway, differentiating between various different forms of guidance. As someone who uses all of these types of document on a weekly basis, I nevertheless find the following paragraph quite a handful –

‘To remove this lack of clarity and the unintended consequences that appear to follow from it, the Review panel recommends that NHS England and NICE should review urgently the terms they are using to define clinical ‘pathways’, distinguishing them from protocols, standard operating procedures, guidelines, guidance, and best practice models. These must be intelligible to all, from clinicians to members of the public.’

The principles on which new guidelines will be based  emphasise the importance of asking, listening and tailoring care to the expressed wishes of the patient and family. But we will need some sort of ‘protocol’ to encompass those principles and remind us, if not compel us, to apply them. Is it possible to do that without paper, a checklist…a booklet? The Leadership Alliance states in its interim document that it will be producing a ‘prompt sheet’. It is accepted that we, the doctors and nurses at the front line, need to be reminded.

The problem of inexorability

What differentiates a pathway from a protocol? To me, pathway suggests a sense of the inexorable, and it is that, in this context, which causes concern. For once patients had been started on a pathway,

‘Many patients and their families felt as though they have lost control over what was happening to them.’

The following extract from the report touches on this sense of inevitability,

‘A repeated observation by families was that starting the LCP seemed to mean that proper clinical assessments of the need for medication ceased, instead of occurring every four hours as recommended in the LCP document; the LCP was then experienced as if it were a protocol, even a “tick-box” exercise, through which the next step was to stop food and fluids and give continuous infusions of strong opioids and sedatives without justification or explanation.’

It is the lack of transparency or sharing of thoughts that causes most concern. We can, I think, be reasonably sure that doctors and nurses were thinking, but perhaps, with a sense of justification permitted by the acceptance of inevitable decline on the pathway, health care workers did not see the need to explain and discuss. The LCP foresaw such developments and accounted for them, but it may have short-circuited the need to share and re-confirm, with families, that they were comfortable with developments. Neuberger highlights the shock felt by families when patients were found unable to converse just a few hours after appearing alert,

                ‘There have been too many people coming forward to the Review panel to state that they left their loved one in a calm and peaceful state, able to communicate, for a short time, or with a doctor or nurse for a check-up, only to return to find a syringe driver had been put in place and their loved one was never able to communicate again. …the Review panel felt that patients, their relatives and carers should be told the reasons for “step changes” in treatment, and be given the opportunity to contribute to a discussion about appropriate care.’

To nurses and doctors, such changes are part of dying, and not necessarily a reason to make a new telephone call; to the family, such changes are full of meaning.

Finding the singular in the ubiquitous

Which brings me to the concept of individualised care. This, to me, is the paradox that must somehow be overcome by those responsible for replacing the LCP. How do we ensure that common management principles are universally and strictly applied by variously trained doctors and nurses, while maintaining the sense of bespoke care?

The more I consider the demise of the LCP, the more I focus on the possibility that we, the medical profession, misjudged the significance of death’s sanctity in the eyes of our patients’ relatives. I do not refer to religious sanctity, but the oneness, the singularity of each life as it slips into death. I am increasingly convinced that the normal expectations of consensus between doctor and patient (or doctor and relative) do not apply in end of life scenarios. Perhaps my experience is skewed to those rapidly progressive conditions and unexpected deteriorations that occur on general medical wards, but there is something uncomfortable about meeting this situation with a prepared approach that one can extract from the filing cabinet behind the nurses’ station. The impression it gives is, ‘Oh yes, we have a process for that.’

However sensitive the clinician, however skillful their communication, any sense of individualisation is likely to be negated by the perception that common rules are being applied. Some relatives say as much, for example, ‘I’m sure you see this all the time doctor…but I haven’t lost a parent before.’

We, as clinicians, have indeed seen it all before, and even those of us who have been bereaved will be in ‘work mode’, where death is commonplace and everything has its place in a ward filled with illness and anxiety.

Every death is unique. Few would disagree with that. But doctors and nurses, who have observed death many times, will say that there is much in common between them. What makes each death unique is the life leading up to it. That life is initially invisible to medical staff. For families, death is the culmination of a rich experience. For those providing care, who can only guess at the depth of their patient’s history, death is the end result of disease. As layers of personality and snippets of history are added to the initial sketch, the true meaning of this death becomes clear. This difference of perception – the rich, full person as perceived by the family on the one hand, the unremarkable process of dying common to all terminal patients as perceived by medical staff on the other, may explain the problems that have arisen around the LCP.

The onward flow

The flattening effects of such philosophical and emotional influences are further exaggerated by the pressured atmosphere of a busy ward; an inadequate relatives’ room, bleeps that have not been deactivated during preparation for a crucial conversation, noisy vacuum cleaners. The quotidian, unremarkable nature of death is impressed on families, and the Neuberger report included examples to reinforce this picture of ‘business as usual’, such as,

‘Privacy screens were normally open so that all visitors, cleaning staff and the other patients could witness my uncle’s distress and imminent demise.’

or,

‘Catering staff asking quite loudly in the middle of the ward to other patients what food and drink they would like is completely inappropriate when my uncle was under the LCP.’

The challenge of remaining sensitive to the unique aspects of each patient, their history, their preferences, their relatives’ expectations, while ensuring that needs common to all dying people are not overlooked, remains huge. I don’t envy the Leadership Alliance in the task of preserving all that was good in the LCP while designing something fundamentally different.

oOo

* I explored the idea of LCP as ‘work’ in a previous post ‘An opaque code: the Liverpool Care Pathway and a gap in perception’

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I hear you

I heard all of this yesterday, but I doubt anyone will ever know because I am dying. They didn’t think I was listening, but listening is about all I can do. Perhaps one day there will be a way of reading these final thoughts, some scan, some process. I hope so, because they need to know.

I was reasonably alert when I came into hospital, but as the pneumonia progressed I grew more and more drowsy. When I lapsed into this coma – I suppose that’s how you describe it – they called a doctor to see me. I heard it all.

The nurse rushed away from me – her shoes squeaked into the distance – and called over to a colleague,

“Bed 9 looks awful, her saturations are 78 percent.”
“Put her on a non-rebreather…turn the oxygen right up…” answered the other.
“She’s scoring 9 though, should I put out a call?”
“Yes. No. Let’s take a look at her…”
I heard her feet settle at the end of my bed. She picked up my wrist and called out,
“Bleep the on-call, I think the saturations are under-reading because she’s shut down.”

Fifteen minutes later a doctor arrived.

“How is she?”
“Like we said. Drowsy, shut down. I would have put out an emergency call if I knew you were going to take this long…”
“Sorry, I had three others to see first.”

He was gentle, and spoke to me as he examined me. He summoned his senior because he was worried, and they talked to one another by the bed. It was strange – he must have thought I could hear if he talked to me during the examination, but if he thought I could hear why did he talk about me, in pretty impersonal terms, so close to the bed? The senior one spoke first,

“She’s going off. Type 2 respiratory failure. Is she for escalation or ward based care?”
“It doesn’t say she’s not in the notes.”
“OK, then we should take her to HDU.”
“For non-invasive?”
“Not right away, but for an arterial line, monitoring…”
“Can I do the line.”
“How many have you done?”
“She would be my fifth.”
“How did the other four go?”
“I missed one.”
“Ok, you can do it, she’s got a decent radial artery.”

He paused,
“I’m just thinking…if she should be for…”
“For what?”
“Everything. Let me just look at the x-ray and read the notes again. I mean, the ceiling will be non-invasive ventilation, ITU won’t take her…”
“She’s not that old.”
“It’s not that. It says here that her exercise tolerance is usually 30 yards,” (that’s true, my lungs have been awful for years due to smoking) “…and she was being assessed for home oxygen three months ago. She’s close to end stage. Let’s talk over here.”

They moved away. How very sensitive! They talked quietly at the nurse’s station, I think (I didn’t have the strength to open my eyes) – too quietly for me to hear – but I know they were deciding if I should ‘get everything’ or not. If I should be given a chance to live. Why move away now?

Then I realised what they were doing. They were trying to be decent, observing a social convention. I don’t think they were really taking my possible feelings into account, because if my feelings were really uppermost in their minds they wouldn’t have even started to have the conversation in front of me. I mean, what do I care how many bloody ‘lines’ that doctor has inserted? They forgot themselves, and it suddenly dawned on them that it was not the done thing to speak so frankly in the presence of a dying woman. They glanced at my face, probably, and wondered – oh God, what if she can hear? – and they became uncomfortable. I’ve seen and heard a lot of that here; behaviours that are explained not by the needs of the patients, but by the sensibilities of the doctors and nurses.

Anyway, I’m still here, same bed, same ward. Evidently it wasn’t felt to be in my interests to be carted along the corroder and attached to a machine. My family came in and spoke to me, then to the doctors, and they talked some more in a relatives’ room. They spoke for me. Quite right too. Later on I heard a nurse say they had ‘agreed not for resus.’ Fair enough. If these final moments of reflection come to a sudden stop I don’t want them running in and having a go at me. But I didn’t really need to hear all the explication, the justification, the gloomy prophecy bandied about with indifference. If you read this, medical people, be more careful with what you say in future. It takes very little energy to listen, and the words go in.

*

Comment I do not write this from a position of moral superiority. I have said many of those things, and worse, next to unconscious patients. It is expedient and, dare I say it, sometimes necessary to have clinically brutal conversations with colleagues in close proximity to obtunded, delirious, encephalopathic or comatose patients, especially in emergencies. But it’s worth reflecting that we have very little idea as to how much they can hear. Some will be just starting to deteriorate, and their faculties will be reasonably well preserved. Others will be truly insensible. The safest policy is strict separation from the bedside, but we are unlikely ever to adhere to that. So how does this fantasy help? If nothing else, it reminds us that behind every impassive exterior there is a mind, and that mind might, might, be as alert as yours.

Precious: a legacy of understaffing in healthcare

I’ve been catching up on Professor Don Berwick, author of the recent NHS safety review. A powerful character, with a powerful, patient centred, emotional approach to healthcare – so emotional in fact that his audiences have shed tears, and readers have cried over his essays. He has said, of the patient-physician dynamic,

“Some say doctors and patients should now be partners in care…not so, I think. In my view, we doctors are not our patients’ partners; we are guests in our patients’ lives.”

The dinosaur in me finds it difficult to swallow that quote whole, and although I see the validity of the aspiration I know that it does not approximate to the truth for many doctors. In an (unsuccessful) consultant interview I was asked, ‘Who is the most important part of the team?’ I paused, thought to myself – ah, I know what you’re getting at! – and said, ‘Well, the patient.’ The questioner marked his paper and nodded; right answer…move on. Did he really believe the answer? Did I really believe my answer? Did he believe that I believed my answer – or was it all political correctness? My cool reaction to Don Berwick’s quote above set me thinking about the reasons why, for some, the doctor rather than the patient remains at the centre of the ‘team’. In this post I will explore the theory that perennial time pressure or overwork, a manifestation of understaffing, shifts the emphasis from one of duty (to the patient, to compassionate care, to perfectionism) to one of exaggerated self-importance on the part of the doctor. If humility is a necessary foundation to compassion, and pride can contribute to medical error, there may be something in it. It’s a subtle psychological trail – bear with me!

My time is precious and you’re lucky to have it

As an SHO I accompanied a consultant on a post-take ward round. He approached a young man who had been admitted as an emergency overnight. The patient was talking on his mobile phone. As my consultant neared the bedside the patient looked up, nodded and carried on talking. The consultant lingered for another 10 seconds, watched as the conversation continued, and turned away, saying, “That was it his chance to see me, and he’s lost it.” The whole team moved on, the patient had no idea what had happened, and he never benefited a consultant level review. I sympathised with my consultant at the time. Now, looking back, I think – hang on, you are only here because patients like him come into hospital. A consultant rejecting patients because they do not show due deference is like a shopkeeper throwing out customers – you are cutting off your own livelihood.

A more quotidien example? A Foundation Year doctor wakes a patient at 3 AM to take blood for a non-urgent but overdue drug level from a patient with difficult veins. The patient complains, verbally or non-verbally, and the nurse requests that the test be deferred to the morning. The FY says, “Look, I was asked to do this when I came on duty at 9 PM, this is the first opportunity I’ve had, this is my window of opportunity…” Once again, the emphasis is on the doctor’s convenience, on access to his expertise, and the patient must submit to his conditions if he wants to receive appropriate care. It’s not the doctor’s fault – he was seeing more urgent cases – but the system is personified in the doctor’s uncompromising expression.

This sentiment carries over into the outpatient setting. A patient rearranges his day to attend a 3.45 PM appointment only to find that the clinic is running 60 minutes late. He is upset. Behind the door the doctor feels harried and rushed. She has lost control of this one, not through indolence, perhaps because three patients in a row had problems that required more than their allotted 10 or 15 minutes. When the doctor and the delayed patient meet at last, both have a grievance. The patient dare not express his (at least not to the doctor herself) for his wellbeing depends on her inclination to do the best for him, to take the utmost trouble. The pressure of time warps a relationship that is already highly skewed in terms of power and vulnerability.

‘Her time is evidently precious, I’d better not ask that third question I was thinking about…I’m lucky to get any time at all by the look of this clinic…’

And for the doctor, what does the fact that this patient’s autonomy has been limited, compressed by the minute hand, mean? It means the patient is dealt with in 7 minutes…because,

‘…he didn’t have a serious disease, he didn’t need a twenty minute chat, and that’s OK, because, damn it, my time is precious.’

The overrun begins to correct itself, the sky begins to clear, all is well with the world once again. That is, from the doctor’s point of view.

The safety connection – ‘It will have to do’

The obvious link to make between time pressure and safety is that when tasks are performed in a rush, or in a state of fatigue or distraction, important steps can be missed or bodged. I think it’s more subtle than that. When doctors embark on practical procedures or a complicated analyses they are usually pretty focussed. But if that task is one of many that require completion in a set timeframe, and if the doctor’s presence has been eagerly awaited by the patient or ward nurses, I wonder if that sentiment – ‘You’re lucky to have me, I’m needed in another five places right now!’ – can foster a tendency to be satisfied with imperfect process, technique or outcome. No one can find a sterile gown…a nurse asks for 5 minutes to pick one up from theatres; the second drug chart is off the ward – can you wait a few minutes while someone fetches it? – ‘No, I’m in a hurry, I need to be somewhere else, it’ll have to do!It will have to do…the attitude that encourages compromise, the ‘normalisation of deviance’, the acceptance that harm is not only inevitable (which it is), but hardly worth trying to minimise.

The habit of self regard

In the days of 36 hour weekday shifts and 56 hour weekend shifts (9 AM Saturday to 5 or 6 PM Monday, no protected rest – the last time I did that was in 2002/3), the fatigue, clumsiness and emotional lability that built up during successive days and nights encouraged an inwardness, a continuous process of self-analysis and self-regard that made me the centre of each patient-doctor interaction. Sometimes this was appropriate, for example when preparing to insert a central line after 40 hours with just a few snatched moments of sleep on the sofa or the mess snooker table – it was a kind of risk assessment, am I up to this? But that habit, of wondering about how I was, how tired I was, how pressurised I was, has been a hard one to shake. It might have infected generations of doctors who now work in more relaxed circumstances, but who still approach their working day with an attitude of ‘This is how much I’ve got to give, I’m the important one here, take it or leave it.’

Service Starts Here

I was once told that in a United States hospital the staff wore name badges with little flaps which, when lifted, revealed the words ‘Service Starts Here’ printed underneath. When I heard this I laughed. It just didn’t make sense. Service? You call what we do in the middle of the night a service? We’re not hotel concierges, we’re doctors! But now, having read so much about how patients have suffered indignities or harms in NHS hospitals, I think I can see how a diminished sense of service can lead to a diminished sense of respect, for patients. The arguments above might go some way to explaining that. But it has to be recognised that lack of any resource leads to a seller’s market, where those have the expertise or skill that appears to be in such high demand can adopt whatever attitude they like. The patients will always come, they have no real choice in an emergency.

During my career I have witnessed huge improvements in junior doctors’ working hours, and I am hopeful that these will allow the sense of duty or service to thrive in future generations. I fear that for many doctors, whose formative years predated these reforms, the psychological consequences of being forever behind, forever tired, forever in demand, forever desperately needed, will continue to cast patients in the role of supplicants. In order to break down that sentient, and assimilate Berwick’s comment about being mere guests, it is necessary to downplay that sense of significance. As we pass through the lives of others, we need to tread carefully and take great care. They have not come to the hospital to see us, but to get better, and we just happen to be the ones they meet when they get there.

 

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An opaque code: the Liverpool Care Pathway and a gap in perception

The independent report into end of life care, ‘MORE CARE, LESS PATHWAY: A REVIEW OF THE LIVERPOOL CARE PATHWAY’ has been published. Eagerly awaited, following months of controversy (click on the category below for other posts) , the report contains a paragraph that at first sight seems somewhat trivial…but which I think holds a key to the whole problem,

The Review panel has reluctantly concluded that the term ‘Liverpool Care Pathway’ is most unhelpful: anxious and upset relatives cannot be expected to understand what an ‘integrated care pathway’ is, let alone what it has to do with Liverpool.

                A ‘pathway’ suggests to most people a road that leading somewhere. When someone is ‘put on’ a pathway, it sounds like, as one carer put it, they are being placed on “a conveyor belt to death”. In the context of the debate about assisted dying and euthanasia, some carers have formed the impression that “the pathway” represents a decision on the part of clinicians, in effect, to kill their dying patients, when that is clearly not the case.

[page 17]

The LCP controversy has highlighted many things, not least the prevalence of poor communication at the end of life, but the importance of the ‘perception gap’ between doctors and patients has not received much attention. The two are of course connected. The paragraph reproduced above is all about perception, and I will use it as a springboard from which to explore this aspect of the LCP.

When the LCP was first adopted I found it quite a challenge. This was because its implementation required work. Before the LCP a patient’s final days would, in many cases, just happen. That is not to say that we were passive, lazy or negligent…just reactive. Doctors and nurses responded to symptoms and altered the care that was given appropriately. Families reported that their loved ones were in pain, we prescribed some morphine or a sedative.  Often, because our minds had not been focussed on the possible burden or futility of ongoing medical treatments (such as antibiotics, infusions or tubes) they would continue by default. The LCP ensured that these factors were anticipated, so the patient did not have to wait for pain killers or go through unnecessary interventions.

But the LCP was a ‘thing’ to be ‘implemented’. And, like any new or different form of treatment, it required discussion. So I found myself sitting down with families who were often bleary eyed with tears or outright fatigue, to introduce a whole new concept. It felt uncomfortable – describing it, justifying it, ‘selling’ it, this Pathway, when the family were under the impression that their loved one’s journey was nearly over. Another pathway, another plan, another change…

My initial thoughts about the LCP were, ‘Why? We’re doing it already. This just turns dying into another booklet…’ But its benefits became clear, and I will not describe all of them here. Because I saw those benefits I concluded that the work of describing and explaining it to families was worthwhile. It put them in the picture. It ensured that the ground was prepared for the adjustments that might be made around the bedside; the drip that might come down without being replaced, the blocked cannula that might be removed without being re-inserted, the feeding tube that might become coiled in mouth and taken away without being re-passed. Before the LCP such changes or omissions would have been discussed, of course, but now the philosophy of care, of minimising burden, was out in the open. But the work had to be done.

The work was complex. It was nothing less than a crash course in the pathophysiology of dying, the concept of treatment burden, the ’double effect’ of opiates… all the while remaining sensitive to individual circumstances. Doctors are used to such conversations, but now there was another step…to encapsulate those principles of palliative care and present them in a new package, the LCP. Here it is. Strange words. As that paragraph from the report suggests…Liverpool – why?, Care – that’s easy, Pathway – what? Well it’s just a name…it means nothing. The important thing is what it means for your relative.

The acronym became familiar to doctors and nurses. In fact it became a shorthand for ‘final days of life’. He’s on the LCP. She’s for the LCP. Don’t you think it’s time for the LCP doctor? Such phrases were not signs of a callous attitude, but instances of medical shorthand. Our conversations teem with them. And overnight, when junior doctors were called to see dying patients, it became common for that shorthand to become manifest. The LCP could be ‘started’ at 3am, unknown to the family. All it meant was, the patient is dying. It formalised the clinical impression. But was it too easy? It is quite possible that such automaticity led us to underestimate the gap in perception between us and our patients’ families. What became shorthand for us became an impenetrable code to families. Codes suggest secrecy, sacerdotalism, an imbalance of power, decisions made without discussion.

But if we did the work, made the time to talk families through it, there was no problem. So what happened? It would seem that on numerous occasions the work of talking was squeezed out, while the implementation – all those adjustments, all those omissions – remained. The ground was not prepared. The code was applied, but the explanation was not given. Thus, as described on page 22 of the report,

As if caught in the midst of a perfect storm, relatives and carers would discover that a previously sentient person was now semi-comatose. They were told that, following an overnight decision by a relatively junior clinician, this patient had been ‘placed on the pathway.’

 

This is the gap in perception. I, a doctor who is well used to seeing patients die, would interpret such a change in conscious level as the natural progression in a patient’s terminal illness, and the LCP as being no more than a corollary to this, a way of organising his care… but in the eyes of his family there has been a deterioration COINCIDENT IN TIME with a NEW TREATMENT. How could any reasonable lay person not assume that the LCP had led to the deterioration? Without the work of explanation the LCP is therefore at best opaque and at worst, to some who feel vulnerable or poorly served by the very hospital in which their loved one failed to recover following an acute admission, outright sinister.

This excerpt crystallises another gap in perception, in the area of consent;

                ‘No one explained anything to us about what would take place once the Pathway was implemented, or what would happen otherwise. We weren’t given anything to read and, as far as I can remember, the issue was raised so tentatively by the doctor and nurse that at the time we were simply unaware that we had taken such an important decision.’ [page 24]

 

The concern is echoed in one of the panel’s conclusions,

From the submissions of evidence that the Review panel has received, it is clear that one of the central issues causing difficulty seems to be some misunderstanding and uncertainty over whether deciding to implement the LCP is a treatment decision that requires the patient’s consent (if the person has capacity) or requires the decision to be taken in the patient’s best interests (if the person lacks capacity). [page 23]

Decision. The leather-skinned, busy, functional doctor in me reacts to this. Decision? I know that the LCP was designed with nothing more than comfort and dignity in mind, elements of care that should not require shared decisions or consent. But the empathetic, reflective doctor in me accepts that because the LCP appears to represent a change in treatment, every effort must be made to carry the family along in complete and explicit agreement. There is no point harping on about whether consent or assent are legally required. If the conversation is had, if the work is done, the gap in perception will be filled with words and mutual understanding. But the work has to be done.

Why do I use the term ‘work’ so much? It sounds churlish and reluctant. I use it because I think we need to prioritise the role of the conversation, rather than let this seemingly soft side of medicine give way to the never-ending, ever more urgent  list of hard tasks that our doctors, junior and senior, must accomplish in an average day. As the flow of acute admissions increases, as our patients’ degree of frailty increases with the average age of the population, we have to come up with better ways of organising that ‘work’.  The report’s introduction concludes with this entirely appropriate comment,

We feel strongly that if acute hospitals are to deal with dying patients – and they will – whether or not they are using the LCP – they need to treat patients, their relatives and carers with more respect. Hospitals and other institutions need to make more time available to them at any hour of the day or any day of the week. We know that hospitals are often short staffed, and that senior staff may often not be present at night, over weekends, and on Bank Holidays. This is perceived by many as one major cause of poor levels of care and communication. In order that everyone dying in the acute sector can do so with dignity, the present situation has to change.

Unless we can find the time to talk, at length, gaps in perception will persist, and our good intentions will continue to be misconstrued.

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5 days: a tale of escalation creep

escalation

Day 1 A 90 year old lady, Mrs V, is admitted to hospital with symptoms of pneumonia. She was managing at home 6 months ago but has become increasingly dependent on her family; the plan was to employ or arrange carers soon. She always said she never wanted strangers around – the words ‘fiercely independent’ are used a lot. She saw her husband die on an intensive care five years ago – it was very unpleasant, and her son makes it clear from the outset that she would never want to be put on a ventilator. Treatment begins, and her son actively engages the consultant in a DNAR conversation during the post-take ward round. All are agreed she should not be subjected to it should her heart stop. But the consultant explains that the pneumonia is not that severe, and says she is optimistic that Mrs V will improve. The son was due to go on a business trip for three days – he asks if that is wise. The consultant says,

“Well, nothing is ever certain, but her oxygen levels are not too bad, and she has no other illnesses. I can’t tell you what you should do, but she doesn’t seem to be in imminent danger.”

He leaves.

Day 2: Mrs V appears confused to the registrar who does the daily ward round. He notes that her oxygen level is borderline. The oxygen flow is turned up, the level improves. But later that day it dips again (saturation 83% on an oxygen mask). The registrar calls the consultant,

“I was thinking about some non-invasive ventilation on the medical HDU.”

“That would be reasonable. Her son was keen not to medicalise too much…”

“I think she just needs a couple of days of support.”

“I agree. She was pretty good before, the antibiotics haven’t really kicked in yet. Any positive microbiology?”

“Streptococcal antigen positive.”

“Ah. Well at least we know. But it could be aggressive. I’m happy for you to arrange transfer.”

Day 3: Mrs V has spent the night on a tight fitting mask which allows oxygen to enter the lungs under pressure. She struggles with the mask periodically, but settles eventually. Her oxygen levels are better, but she is still confused. The team put this down to delirium, an acute confusional state. A blood sample is drawn from the wrist, and it shows that her carbon dioxide levels have risen. The HDU nurse asks if the team could arrange an arterial line, a cannula inserted into the radial (wrist) artery, to allow more frequent blood sampling. This will avoid repeated needles. The registrar agrees, the SHO volunteers. He can feel the artery easily, and is confident. The ward round moves on and the SHO stays behind, but 40 minutes later he calls the registrar.

“I couldn’t get it in.”

“How many attempts?”

“Just three…but it bled and she has a big bruise.”

“Leave it for now. I’ll do it.”

Day 4: The consultant does a ward round in the morning.

“How come she’s got a nasogastric tube?” she asks of the charge nurse.

“She was sick overnight. Her stomach filled with gas because of the positive pressure. She’s a lot more comfortable now.”

“Is she eating?”

“Not much. She has some sips during breaks off the mask.”

The team look at the arterial blood sample results. Gradually, with the eye of faith, the respiratory failure is improving. Mrs V cries out. She has pleurisy, intense pain at the edge of the lungs. Simple pain killers are not enough, and she is prescribed morphine. As the consultant walks away she notices the urinary catheter bag hanging from a stand.

“Why the catheter?” she asks. The charge nurse replies,

“She couldn’t manage with the commode, not on the mask. She’s high risk for pressure sores. We put it in yesterday.”

Day 5: Mrs V deteriorates. A repeat x-ray shows that the pneumonia has spread further through the right lung. The registrar calls the consultant.

“I’ve got quite a bad feeling about her now. I think her age is beginning to tell, I know she didn’t have any other illnesses but…”

“You’re right. Once things begin to go downhill it’s hard to see her getting better.”

“I understand her son didn’t want her to go to intensive care.”

“I don’t think they would take her to be honest. But yes, he told me that she wouldn’t want that. In fact he needs to know what’s going on. He’s supposed to be coming back today.”

“The nurse called him this morning. He arrived back in the country in the early hours apparently. He’s on his way in.”

“I’ll speak to him. We need to discuss de-escalation.”

At 2pm her son arrives on the ward. He finds his mother lying on her bed, barely conscious now. She is muttering words but he cannot understand them. A monitor pings and alarms insistently above her head. Trailing from her body are a urinary catheter, an arterial line transducer, two intravenous infusion lines and the wide oxygen tube attached to the mask at her face. The air and oxygen in the mask whistles. Cardiac monitoring leads trail out of her gown into the machine that is alarming. He sees the bruise on her forearm that has now developed into a 4-inch haematoma that sits proud to the skin. He pushes the curtain aside, tears in his eyes, storms out of the cubicle and shouts in the direction of the nurses’ station,

WHO DID THIS? SHE NEVER WANTED THIS!”

She dies later in the day, the mask having been removed and the monitor having been turned off. Six weeks later her son writes to complain about the inappropriate, overly intensive treatment to which she was subjected during her final illness.

What happened here?

*

I wrote this to explain how, as the cliché goes, the ‘road to hell is paved with good intentions’. Looking back, Mrs V’s treatment seems misguided. How could her consultant have allowed a frail 90 year old lady with (what proved to be) severe pneumonia undergo multiple, potentially painful and distressing procedures to no avail? Didn’t she hear the son when he explained how Mrs V had witnessed her husband undergo a similar ordeal? Why didn’t she put a brake on the system and stop the medical rollercoaster in its tracks?

But then, let’s go back to beginning and follow these events step by step. The infection didn’t look that bad at the beginning, there was little reason to expect Mrs V’s death. So, when Mrs V’s oxygen levels fell, a judgment was made that a short period of assisted ventilation would help. But then, to avoid repeated blood tests, an arterial line was required – a procedure that proved harder than it looked. The gastric tube had to be passed, the nurses couldn’t just stand by as her stomach filled with gas. The catheter was routine. Every step was justified.

How could this have been avoided? Well, if the son had been there every day he may have called a halt to things, but I’m not sure he would have felt able to question each procedure in the face of enthusiasm and almost routine pattern following on the part of junior doctors and nurses. So to stop this we need to go back further…to the initial conversation. It needed to focus on the ‘ceiling of care’.

Perhaps the consultant should have made a decision, in discussion with the son, that whatever happened Mrs V would remain on the basic medical ward…even if she deteriorated. In that way there would be no danger of being prescribed the mask, and no danger of having to endure the paraphernalia that can goes with it. The son would have returned (perhaps a day or too earlier if he had been contacted about the deterioration) to find his mother being treated on the original ward, in relative comfort. Knowing how things turned out in the end, that decision would have been right. But no-one knew how things were going to go. The consultant thought there was a chance of survival. She decided that the burden of treatment was reasonable in this case, despite the caution that the patient’s son had expressed. She made the wrong call.

I have no right answer here. I wish only to highlight that, as Soren Kierkegaard said, ‘Life can only be understood backwards; but it must be lived forwards.’

The case description is entirely fictional.

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