When atheist doctors meet God’s will

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Michelangelo’s Pietà, detail

It’s not often that patients near the end of life, or their relatives, invoke ‘God’s will’, but it does happen. When it does, the atheist doctor has a challenge. They ‘know’ that God does not exist, but must use words and arrive at decisions that take the patient’s religious convictions into account. This is not so hard, at the superficial level. They will ensure that the patient is offered spiritual support; they will tailor care to the patient’s goals and preferences; but they will never accept that their course is being observed or manipulated by a higher being. Perhaps it doesn’t really matter – as long as the right decisions are made, the difference in belief remains irrelevant.

When faced with a seriously ill patient (or more commonly their relatives) with an overtly religious perspective, I am respectful, but deflect the conversation to medical practicalities. This personal observation is borne out by previous studies. An analysis of 249 goals-of-care conversations, between 651 ‘surrogate decision makers’ and 441 health care professionals found that religion was brought up in only 40 cases (16.1%), despite 77.6% of the discussants saying that religion was a prominent consideration (Ernecoff et al, 2015). In only 8 of those conversations, ‘did health care professionals attempt to further understand surrogates’ beliefs, for example, by asking questions about the patient’s religion.’ A good proportion of doctors ‘redirected the conversation to medical considerations’.

The infrequency with which religion enters the room is surprising, given that religion serves as a great support in times of pain, distress or fear. Perhaps, confronted by the technical complexity of modern healthcare, and in environments that are not conducive to opening up their deepest, oldest beliefs, religion is left where is spends most of its time, within the private sphere.

However, faith definitely does influence decision-making. The Ethicatt study showed that ‘religiosity’ correlates with a tendency to request more medical interventions, and for longer (Bülow et al, 2012). Commenting on North American population, Maisha Robinson (2016) describes how religious ‘African Americans are more likely than Caucasians to choose life-sustaining treatment at the end of life—even if the burden of treatment outweighs the potential, limited benefits.’ It is necessary then, to have some knowledge of religious background even if it is not revealed during initial discussions. Palliative care teams are very good at actively seeking this information; those working in other specialties may be less proactive.

If an atheist doctor concludes that continued active treatment is no longer appropriate, how does she challenge a family’s preference without being seen to criticise their spiritual beliefs? This is very dicey ground, and one that most doctors choose to step away from. If the relatives’ opinion is based on their knowledge and greater understanding of the patient, who is the doctor to question the spiritual foundation on which that preference is based? Of course, she does not that. Instead, she restricts herself to medical matters. She ‘redirects’, as in the Ernecoff paper. In the Ethicatt study ‘eighty percent of respondents stated that they would try to convince a patient against treatment if they thought that treatment was futile’. It is common then, to challenge preferences that would prolong life without bringing benefit, even when those preferences are based in a heightened concern for life’s sanctity.

What are the words? If a relative says something along the lines of ‘we should let God decide,’ the doctor might explain that ‘we have been trying for three weeks, and the only reason your mother is alive is because of the life support machines. If there was going to be an improvement, we would have seen it by now.’ This avoids direct reference to God, but could be paraphrased as, ‘it is technology, not God, that has sustained your mother these last few weeks, and it is clear that no higher power has intervened to reverse the underlying disease.’ To say this would be offensive and unkind, but for the atheist who is reviewing a medical complex scenario from a causative perspective, no other conclusion can be drawn.

As doctors with our own views and beliefs (on non-beliefs), we are not trained to engage on theological or spiritual issues. Coincidentally, an example of faith sensitive therapy for depression is being widely reported in the media today – whereby a form of CBT called behavioural activation is linked to Islamic belief systems. Therapists involved in this service must be comfortable with faith based conversations – whether they need to believe or not is a more intricate question. Obversely, health care professionals have been disciplined for offering to pray for patients. How faith intertwines with health, fear (of dying), hope and nature’s sometimes cruel caprice is too subtle an analysis for us to undertake. It’s not revolutionary, but the message I take away is that doctors without faith must remain respectful, while adhering to what they feel, or know, is in the patient’s best interests while they lie in this visible, tangible realm.

 

***

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The gentle fiction

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‘Through rose tinted spectacles’, by monstercoach

 

This time I was going to give the hard news. That was my agenda. He had been in out of hospital a few times, his cognitive and physical status fluctuating due to the underlying condition. There was no cure. So in they came to the clinic, husband and wife, beyond middle age but not yet elderly. I got into it quickly,

“So… the last few months, I’ve noticed, you’ve got weaker every time you’ve come in. The complications have been more difficult to get over. At home… you’re not getting out…”

He said nothing. Perhaps today was an off day, mentally.

“So we need to think about the future. What should we do next time you come in. And if you get really ill, an infection, or…”

His wife shifted in her seat.

I went on, using words I have used many times. About how there was only so much we could do if he deteriorated. About the possibility of spending his last days or weeks at home, if it looked like he might be dying. About things that might happen suddenly. Uncomfortable considerations, but necessary.

“But doctor, he’s doing OK really, isn’t he?”

What? Where was this coming from? I moved by gaze from the patient to his wife. She was winking at me. A classic, conspiratorial wink. No, I would not have this….

“Well, it’s important that we are very clear, and honest, about what we have seen over the last year. It’s been a downward trend…”

“But at the moment, he’s stable isn’t he? He’s alright.”

I looked at him. He was looking at her.

“Don’t want to hear any bad news, do we?” she said.

“No. No. There’s enough to worry about in the world…” he replied, laughing quietly.

I paused. The signals were clear. This was not the time to push it. So I changed tack.

“Well,” I continued, “To be fair, you haven’t been in for two months now. The new drug we gave you for the confusion seems to be working. And…” I turned to the computer, “Looking at your numbers, your blood tests, there hasn’t been much change there either. So yes, pretty stable!” I was getting into it now. The conspiracy of optimism. He needed this –  this gentle fiction.

We wrapped things up. I had achieved nothing definite in terms of anticipating how to handle future crises. We would have to see how it went. So much for my agenda. Perhaps that was the problem, developing an agenda in isolation.

“Back in two months then?” I suggested, “Unless you have to come in earlier.”

They walked out. There would be another time. Or, more likely, the hard truths although fully understood, would remain unsaid until the very end.

 

(Details changed)

 

***

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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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So superior… – making judgements on medical care

 

amberspyglass

The Amber Spyglass (or what a retrospectoscope might look like)

 

Patients may see many doctors during the assessment and treatment of a particular illness. In the transition from primary to secondary care, medical opinion becomes more specialised, and the knowledge of the doctor facing the patient deepens in that particular area. Doctors become more confident in their opinion, and in the light of information are able to judge the quality of the decisions taken earlier on. This means that the specialist must, either privately or openly, pass judgement on what has gone before. Usually there is no controversy, because nothing incorrect was done. But sometimes, looking back, it becomes apparent that clues were missed. Things may have been done ‘sub-optimally’… according to the specialist’s very particular expectations.

The decision then has to be made – do you, as the specialist, tell the patient what you are thinking, or not?

The answer to this would seem simple. If by omission or commission the patient has been harmed, there is a responsibility to be open about it. However, harm is difficult to define, and the grey zone between delay and harm is broad. An abnormal blood test performed fifteen months ago might, if interpreted correctly, have led to an earlier diagnosis – but who can measure by what degree the patient’s life has been affected?

For the patient, finding out that two years ago a scan showed some early signs of liver damage, or that an abnormal vitamin level went unnoticed and uncorrected (contributing to months of fatigue), the conclusion is bound to be that things were not done well. The question of blame arises. The patient may ask  – what do you think should have been done? What do you think about the quality of the care I received? Patients, in fact all people who receive a service from a professional, like to benchmark. It is natural.

It isn’t just at the transition between primary and secondary care that judgements on the quality of care may me made. On the wards, once a patient is established under the care of a specialist team, questions may be asked about the time it took to reach a diagnosis, or about the appropriateness of initial treatment. If the wrong diagnosis was reached (say, heart failure rather than chest infection), was the error acceptable? Was it just the way medicine works, with the correct diagnosis emerging over time, as pennies dropped and more experienced people made their assessment – or was it just bad medicine?

The temptation for doctors is to close ranks, and to present the hospital, or the health service as a whole, as a seamless unit where information comes in and decisions are made, by individuals yes, but by professionals who are part of a larger machine. Individuals shouldn’t be criticised; rather, blame the system.

I remember once, as a registrar, the family of a deteriorating patient asking me the name of the doctor they saw in casualty, who they felt did not diagnose the illness quickly enough. In the relatives’ room they pressed me hard, and demanded details. I felt that the presentation was complex, and that the quality of initial assessment had been satisfactory, if not genius. So I refused to give a name. I talked about the ‘team’. In my wisdom I felt that it could not help the situation to offer up an anxious SHO, and that the request reflected the family’s grief and uncertainty. The family needed a focus on which to direct their anger with the situation. Was I right or wrong?

On other occasions, in clinic, I have had to explain as best I can the decisions made by a doctor – often a GP – whom I have never met. I may end up saying things like, “Well, based on the information that was available eighteen months ago, it wasn’t unreasonable to monitor the situation…” Or, “Perhaps another doctor might have referred you six months earlier, if they had a special interest in this disease, but yet another might have waited a year. There is no right answer.” Or, if the patient asks me up-front whether I think their GP is any good, based on what has happened before, “It is not fair for me to pass judgement… I see patients with your problem nearly every day, and I come to this with a very specific expertise. Your GP has to decide when to refer… and it’s perfectly reasonable to monitor things for a while first.” I may say this even I think, privately, that they can’t have been that up to date with modern medical thinking on the topic in question. But who am I to criticise? What do I know about psychiatry or gynaecology?

So what drives this instinct to obfuscate? Is there a justification? Surely, in an era of transparency, the patient should know exactly what I am thinking.

It may be a desire to nip a potential complaint in the bud, even when I think a complaint (formal or informal) might be unjustified? If so, am I right to forestall what a more objective person might regard as a necessary corrective?

It may be loyalty to the larger medical community – an instinctive reflex to shield colleagues from criticism, just like in the relatives room on the ward all those years ago.

Or perhaps it is based on my acceptance that the practise of medicine will always involve variation in knowledge and in quality. Not every biochemical clue will result in the same decision. Each doctor will have developed their own store of knowledge, a unique bank of experiences and memories on which to base their decisions. As long as the decision was not clearly negligent, or so stupid as to warrant immediate correction, we are bound to let borderline or ‘sub-optimal’ decisions go without making a song and dance. We might hint in a letter back to the GP, or in a comment to a trainee’s supervisor, that next time a different decision should be made, and perhaps in that way we reassure ourselves that we have tried to improve the quality of the system as a whole. But patients are excluded from this feedback loop. They may go home entirely ignorant of the fact that things could have been done better, and may not read between the lines of the letter that they are copied into.

In modern medicine patient involvement is key, and transparency is a central pillar. We have a duty of candour which applies to identifiable errors of a certain gravity, and no doctor will overlook a pattern of behaviour that clearly puts patients at risk.  But no such duty exists for reporting back on the grey cases where some educational improvement can be made. Is it reasonable not to inform patients in these circumstances? Would it help them? Or would it just cause confusion, and a loss of faith?

Over time I have become more honest about the non-scientific nature of medicine. Sometimes I begin a discussion with the patient with the papers spread out in front of me, or the blood results on the screen, and talk through what may or may not have been going on in their body over the last few years. If I think a spike in a liver enzyme might have been an early signal, which in retrospect was missed, I will tell them, but without loading it with an opinion. It’s just a fact. The ‘retrospectoscope’ can provide a false image of the circumstances that existed years before. Now you are here, let’s sort it out. There is no point in opining from the security of the specialist’s chair. Misdiagnoses are made there too.

In this way patients can begin to understand that the narrative of illness may follow numerous detours and diversions before the destination – a firm prognosis, a treatment plan – comes into view. Care is not homogenous, and variability, while sometimes permitting the occasional detour, is an inevitable result of human involvement.

 

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Switch it off

andrus

Detail from Andrus, by Franz Kline, an Abstract Expressionist who died from rheumatic heart disease aged 51. Andrus was the name of his cardiologist. On display at the Royal Academy, London until 2nd January 2017.

***

 

The story covered by the BBC and several newspapers about 71-year old Nina Adamowicz, who asked to have her pacemaker turned off in the context of advanced heart failure, caused a flurry of interest last week. There was concern, quickly put to bed by Dignity in Dying among others, that deactivating the device amounted to assisted suicide.

Most, I think all, of the doctors I observed commenting on social media failed to see an ethical problem here. The patient had mental capacity. All patients have a right not to receive treatment. A pacemaker is ‘treatment’. The patient asked for it to be turned off. That’s that.

Said to be the first case of its kind in the UK, the scenario is not novel, and cardiologists in the US have considered this dilemma very carefully in recent times. A consensus view produced by an expert panel (2010) was that,

‘Legally and ethically, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.’

and that,

‘The right to refuse or request the withdrawal of a treatment is a personal right of the patient and does not depend on the characteristics of the particular treatment involved (i.e. Cardiovascular Implantable Electronic Devices – CIEDs).’

This is clear and makes sense, but as in all aspects of medicine, the reality can be more challenging, both for patients and their doctors. Certainly for Ms Adamowicz and her cardiologist it was not straightforward, because despite her consistently stated desire (clearly and movingly related in this 13 minute interview on radio 4), she had to await the outcome of a specially convened ethics committee.

Most de-activation requests concern implantable defribrillators (ICDs), devices that fire electric shocks when the heart arrests or comes close to it. Switching these off in the context of approaching, natural death appears uncontroversial, as patients can suffer unnecessarily if they experience such shocks in their final minutes or hours.

For patients whose heartbeats depend on constant impulses from their pacemakers, the situation is different. There is a possibility that their heart will stop as soon as the device is deactivated. The connection between medical intervention and death is stronger, and however robust the ‘legal and ethical’ defense for such an act, doctors are bound to be wary of putting themselves in such a situation.

I have not been able to confirm Ms Adamowicz’s cardiological diagnosis, but in her own words, she was indeed ‘100%’ pacemaker dependent. At night she would often feel her heart slowing to a dangerous rate, she felt herself beginning to slip away, and then the device would kick in and bring her back. Complete dependence would explain why she ‘described her body as feeling heavy and [  ] a little nauseous’ after the twenty-minute procedure to turn it off in October 2015.

In the largest descriptive study published in JAMA, only 6 of the 150 terminally ill patients with CIEDs fit this ‘dependent’ category. However, patients whose underlying heart rate was too slow survived for a significantly shorter time than those who were receiving ‘tachycardia therapy’ – median zero days vs 3 days. The type of underlying rhythm problem therefore matters, and physicians should be aware that their patients could die quickly.

Interestingly, in this study, less than half (43%) received a palliative care consult, and only 3% were subject to a clinical ethics review.

This fascinating study led to a New York Times article which highlighted the discomfort some cardiologists feel when asked to switch off devices in the ‘pacemaker dependent’. A survey (abstract only) of 787 professionals involved in deactivation found that more were comfortable ‘with personally deactivating’ with ICDs than a pacemaker (56.7% vs 34.4%), but that a minority equated the intervention to euthanasia (11%).

This minority opinion is worth examining. Are those doctors being squeamish? Are they placing their discomfort, moral instincts or religious beliefs over patients’ autonomy?

A case study published by The Centre for Bioethics and Human Dignity described a 69-year old lady with heart block who was pacemaker dependent. She decided to have her device switched off – not in the context of advancing or terminal illness, but because she no longer wanted to live. She was clearly depressed, and it was even suggested that she had not wanted the pacemaker implanted in the first place. Although under the impression that her heart would stop immediately, it was clarified that,

Though she demonstrates no intrinsic rhythm when the rate of the pacer is turned down to 30 beats/minute on testing, most patients do develop some rhythm after several seconds of not beating at all.’ So, death would not be immediate.

Both the experts responding to this scenario find it challenging, essentially because the patient is not dying. The first emphasises the need to exclude or treat depression, as it may be impairing decision making, but concludes,

‘turning a pacemaker off may be ethically justified if 1) continued treatment is inconsistent with patient goals, 2) death is imminent from either cardiac or non-cardiac medical complications, and 3) the patient is refusing or has refused other forms of life-sustaining treatment.’

But then,

‘…others believe that, because of implantation into the chest cavity and the necessary wiring to an internal section of the heart, an implanted pacemaker becomes an integral part of the cardiovascular system, similar to an aortic graft or a cardiac valve replacement.  Using this latter conceptualization, it becomes ethically problematic to render a pacemaker non-functional.’

The second expert is even more cautious,

‘While it would be permissible for a patient to refuse pacemaker insertion, it is an unresolved question whether it is permissible to shut off a pacemaker which is sustaining life without causing intolerable symptoms.

‘Some would argue that it is permissible because it is artificial technology, comparable to a ventilator.  Most would argue that it is not permissible because the pacemaker, once inserted, becomes part of the person, and shutting it off is akin to assisting in a suicide.’

So, what looked like a very uncontroversial dilemma at first glance last week, is perhaps not so straightforward. Whereas decisions to stop ventilators or withdraw artificial feeding have been subject to legal scrutiny (eg. Miss B, Tony Bland), the legal basis for the deactivation of fully internalised prostheses or devices remains a grey area. If the patient’s wishes are known, as in the case of Nina Adamowicz, decision-making is much easier. A point emphasised in the consensus statement referred to above is that those implanting cardiac devices should have ‘should have a clearly defined process to withdraw therapies‘, ie. they must talk to their patients about it at the outset, and again if their health begins to deteriorate. As ever in optimal end of life care, it’s about frank conversations taking place before crisis begins to impair the capacity for communicating a person’s wishes.

 

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Not ready yet

Much is written about the importance of doctors and patients talking about dying. The harms done by not talking about it are many, and have been described in this blog many times. Inappropriate resuscitation attempts, futile spells in ITU that the patient would not have wanted if asked, inaccurate guesses by distant relatives as to what their priorities are… for want of a conversation.

So as doctors we have become more comfortable and ready to have these discussions. We identify clues that the end of life is approaching, and rather than walk on leaving nature to do its worst, we let the patient know. We accept the challenge of breaking the news, even if the clues have been there for other doctors to see for some time. The patient is under our care now – it is our responsibility to make the intervention.

Those of us who feel strongly about the harm done by reflexive escalation or lazy evasions may have a lower threshold for engaging in end of life discussion than others. We may judge our colleagues harshly for dodging the difficult conversations.

But sometimes, we get it wrong.

 

***

 

Dr C looks through the results of recent investigations. The patient, Jean, has been admitted with heart failure, a longstanding diagnosis. Her performance status has deteriorated over the last three months, and she is NYHA grade III (‘Marked limitation in activity, even during less-than-ordinary activity, e.g. walking short distances. Comfortable only at rest’). She has spent four of the last ten weeks in hospital. She is 78.

Dr C, who has never met her before, decides… it is time to talk about dying.

 

 

Dr C: Jean, I’d like to speak with you today, about the future.

Jean: Of course. Take a seat on the bed.

Dr C: Your heart. It’s getting worse. I’m worried about it. It seems to me, it’s getting weaker and weaker. On bad days, it’s barely strong enough to keep you going.

Jean: I manage.

She’s defiant, of her illness, of her situation.

Dr C: Has your doctor spoken to you about what might happen if it gets any weaker?

Jean: No. Should he?

Dr C. Well, it doesn’t matter, we can speak now. I’m worried that if there’s a crisis you may die… of heart failure. I think we need to discuss this.

I’ve said it, the D-word.

Jean:  You’re the first to mention it.

She’s pushing back, she doesn’t want to have this conversation. I feel uncomfortable. But I’m going to carry on. The situation demands it.

Dr C. What family do you have Jean?

Jean: My son. He lives in Newcastle.

Dr C: Is he coming to visit?

Jean: He doesn’t know I’m here yet.

She’s strong, doesn’t come across as vulnerable. I’m not going to suggest we wait for the son to come down…

Dr C. So, Jean. I’ll be frank with you. Many people with a heart as weak as yours do not survive longer than a few months. It’s quite possible that you only have that much time left. I think it’s important that you know this, and…

Jean: How long am I in hospital for then?

This is hard! I feel like I’m forcing it on her. She’s clearly got mental capacity… is she just evading the issue? Do I go on? I must. And I must be clear. I must be blunt.

Dr C: OK. Basically, I think you need to know that you might be dying. And I think your family need to know this, so that you can make any plans, or decisions.

Jean: Like what?

Dr C: Well, for instance, if you were to deteriorate, and we could only give you comfort care… would you rather be at home, or…

Jean: Of course. I hate hospitals.

Not sure I’m doing the right thing here. She’s not getting it. But it’s my job to make her get it.

Dr C: So imagine, you get another chest infection, and the strain causes your heart to pump even less well… we make you as comfortable as possible, but you may not be able to communicate, so we, or your family, need to understand more about your wishes, where you would like to be, what you wouldn’t want… that way we can give you the best care.

Jean: So what do you need from me right now?

It’s not what I need Jean. It’s what you need.

Dr C: Nothing Jean. Just… just for you to think about it. The future. OK?

 

Jean is transferred to the heart failure team. Ten days later Dr C happens to pass her on the ward . Jean glances up, but does not smile. A member of the cardiology team stops Dr C, and, with an embarrassed look, explains that Jean’s son came in and caused quite a fuss. He was angry that a doctor told his mother she was dying, without him being there. He found Jean in a very depressed state. She said that the doctor is question was very matter of fact… ‘It wasn’t kind,’ the son said.

“But she needed to hear it,” replies Dr C, sighing.

“Well the son thinks not. Not yet.”

“When then? What’s happening now anyway?”

“We off-loaded her, she looks a little bit better. Going home tomorrow. Big care package.”

“And did you do a DNACPR?”

“She didn’t want to discuss it. But we did it.”

“And pall care?”

“We’ve asked the GP to refer in the community…”

Dr C walks away. She is sure she was right to start that conversation. She is sure that her intervention, although painful, has set in motion a series of conversations and decisions that will, ultimately, benefit the patient. But the fact is, she has caused some harm, in the short term. Harm to Jean – who was upset; harm to the son, who walked into the aftermath; and harm to herself, who now feels like an evil-doer.

Wouldn’t it have been simpler, in this case, to respond to those early vibes – Jean’s evasions – and walk away? Isn’t it appropriate, sometimes, for a patient’s desire to avoid the hard questions to be respected, even it means they meet death in a relatively unprepared way. Even if it means that there is no DNAR decision, no stated preferences.

Or did Dr C misjudge things?

At the end of the day, it was Dr C’s opinion – her accumulated wisdom on such matters – vs the patient’s own instincts. The patient’s preference in fact. A preference not to engage, until the writing was truly on the wall. A preference Dr C tried to overturn.

As a result Dr C became a little more cautious, and a little more ready to leave things as they are. Her career would probably see many such corrections, one way or the other.

(Fictional case)

 

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New guidance on DNACPR – clearer, between the grey areas

A new version of the BMA/Resus Council/RCN resuscitation guideline is out, and it makes for interesting reading. The ideal circumstance, where a patient with capacity is well enough and has time enough to engage in a discussion about the merits of CPR, is well described. It is in the emergency setting, where capacity fluctuates, time runs short and loved ones are terribly stressed, that difficulties can occur. It is for doctors in those situations that the guideline has some new things to say.

 

The need to inform (or try to inform)

Even when CPR has no realistic prospect of success, there must be a presumption in favour of explaining the need and basis for a DNACPR decision to a patient, or to those close to a patient who lacks capacity.

The guideline incorporates the Janet Tracey and Carl Winspear rulings – the requirement to inform patients with mental capacity, legal representatives or relatives about DNACPR decisions as soon as possible. Although keeping those connected to the patient involved in decision-making is an obvious mark of good practise, it is possible that appropriate DNACPR decisions are delayed while the ‘informing’ stage is arranged and undertaken. To those of a defensive disposition, it has felt, post-Tracey, as though DNACPR decisions cannot be put in the notes until that stage has been completed. The guideline makes it very clear that this is not the case,

…it is important that the decision is not delayed (and the quality of care of the patient compromised thereby) if the patient’s family members or other carers are not contactable immediately to have the decision explained to them. A timely decision must be made in the patient’s best interests in order to provide them with high-quality care, and that decision and the reasons for making it must be documented fully. All reasonable effort must be made to contact those close to the patient to explain the decision, preferably in person, as soon as is practicable and appropriate.  

If the relatives are not contactable (including by phone in the middle of the night– a lesson learnt in the Winspear case), it is vital (as ever) to document your attempts fully.

My own take on the question how to ‘inform’, is that the task is far more complex than it seems. Most of us are not able to convey such a symbolically powerful decision without introducing the subject gently and framing it sensitively; the conversation may start as an explanation of what is going on medically, but depending on the relative’s response it may then become an exploration of the patient’s life and goals, or of the relative’s assumed role as permission giver in the decision-making process. The skilful doctor will find ways of reversing this misapprehension, but even in experienced hands the conversation can begin to feel like a request for assent.

However, if the going gets tough, it remains clear that…

It is not necessary to obtain the consent of a patient or of those close to a patient to a decision not to attempt CPR that has no realistic prospect of success. The patient and those close to the patient do not have a right to demand treatment that is clinically inappropriate and healthcare professionals have no obligation to offer or deliver such treatment.  

This is helpful legally, but not practically. Clinicians will continue to agonise and prevaricate in those (quite rare) situations where they are faced with opposition to the DNACPR decision. Rather than saying, ‘Actually, you have no legal right to demand CPR for your relative, I’m doing it anyway’ most doctors would say, ‘OK, well I can see there are strong feelings here, and I suggest we leave the question open and discuss it again later…’ It is easier to roll the decision over, than to do what guideline suggests… seek a second opinion.

 

Second opinions and the multi-disciplinary team

Main Message 12 says,

Where a patient or those close to a patient disagree with a DNACPR decision a second opinion should be offered. Endorsement of a DNACPR decision by all members of a multidisciplinary team may avoid the need to offer a further opinion

This is interesting. A second opinion (internal to the hospital) is a good way of addressing and diluting any sense of distrust that may have arisen. A fresh face is introduced, one who will, in all likelihood, agree with the assessment of the initial decision maker. I have certainly never altered a colleagues DNACPR decision when asked to help, but I have brought to the table a different form of words, and this can help give the family a different perspective.

More interesting still is the concept of the multi-disciplinary team in DNACPR decision making. What is this? The firm (a more fluid thing than it used to be)? A senior nurse plus the firm? Allied professionals such as physios and occupational therapists? Perhaps in non-emergency cases it might include an oncologist or surgeon, and in the gradually deteriorating patient, a palliative care team member.

As a consultant I make a habit of asking the ward team if they agree on DNACPR decisions, not least because it is good training to get them to think through the whole process, and its consequences. In my experience, senior nurses tend to have well developed opinions (usually tending to towards the opinion that CPR as largely futile, based on direct observation), while allied professionals are not used to being presented with the question, and not comfortable with it. Senior medical trainees are very good opinions, often more up to date in questions of cardiac rehabilitation or neurological recovery, while junior trainees are very much led by their consultant’s view.

Overall, I’m still not sure what the MDT is in acute scenarios (in the AMU for instance). This point in the guideline does however open the door to teams of doctors and nurses on post-take ward rounds making secure DNACPR decisions for frail patients without capacity, if I read it right.

 

When it is obvious

Main message 24 attempts to address a very common scenario – that of a patient who is clearly near the end of life suffering a cardiac arrest, in the absence of a recorded DNACPR decision. Hitherto the default has been to call the crash team and commence basic life support, followed by a few minutes of advanced life support until a suitable senior person (usually the medical registrar) arrives, assesses the situation, reads the notes or receives a summary from the ward nurse, and stops the attempt. This is the distressing end-point for many whom we, as doctors, as a health service, have failed by not addressing resuscitation at an earlier stage. The guideline says,

Where no explicit decision about CPR has been considered and recorded in advance there should be an initial presumption in favour of CPR. However, in some circumstances where there is no recorded explicit decision (for example for a person in the advanced stages of a terminal illness where death is imminent and unavoidable and CPR would not be successful) a carefully considered decision not to start inappropriate CPR should be supported.

This appears to protect the nurse or doctor who assimilates the situation quickly (and ‘carefully’) then says ‘No, don’t call the crash team’. This is a big step. We are talking ad hoc DNACPR decisions. The main text expands,

There will be some people for whom attempting CPR is clearly inappropriate; for example, a person in the advanced stages of a terminal illness where death is imminent and unavoidable and CPR would not be successful, but for whom no formal CPR decision has been made and recorded. Also, 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

It will take nurses of significant experience and confidence to actually do this.  Doctors are rarely present at the moment of death, so it would seem not to apply to them. I can imagine a patient arriving on ward with signs of advanced cancer who then arrests, or a frail person with severe pneumonia who suddenly deteriorates in the ED, before the admitting team has had time to finalise the DNACPR decision, or inform relatives. Whatever the intended scenario, whoever the intended actors, this new message seems to be an attempt to bring common sense into an area where perverse things have been done due a feeling that the default ‘For’ status cannot be reversed.

I wonder though, how often nurses or doctors will make this step… and if it will lead to any complaints.

 

Lost opportunity?

All this last minute, vexed decision-making can of course be minimised by pre-emptive discussions about the potential benefits of CPR. This guideline is intended primarily for those working in secondary care, and the last Main Message emphasises our duty in raising the question early,

Failure to make timely and appropriate decisions about CPR will leave people at risk of receiving inappropriate or unwanted attempts at CPR as they die. The resulting indignity, with no prospect of benefit, is unacceptable, especially when many would not have wanted CPR had their needs and wishes been explored.

This is welcome, but to me is discrepant with Main Message 2,

If cardiorespiratory arrest is not predicted or reasonably foreseeable in the current circumstances or treatment episode, it is not necessary to initiate discussion about CPR with patients

This was present in the guideline’s earlier version, and seems to be a missed opportunity to identify patients who are unlikely to benefit from CPR, even if the chance of them needing it in the next day or two is small.

According to this message, doctors can with a clear conscience avoid resuscitation discussions if they do not think cardiac arrest is likely. What’s wrong with that? Although some patients are clearly deteriorating in the context of their acute illness (e.g. severe pneumonia on a background of extreme frailty), and will clearly die soon, most are in that early period where the degree of reversibility is not clear, and although they might arrest, they might not. It is very easy (and I know this because I have done it, during weaker moments) to say, either internally or to one’s team, “They’re stable right now, there are no signs of imminent deterioration, let’s see how they are tomorrow and address DNACPR if it’s not going well…” In a frail patient this may be an abdication of responsibility, because even if there is only a 5% chance that they will arrest, you end up walking off the ward without having dealt with the consequences. I think the guideline should say, ‘If cardiorespiratory arrest does not appear imminent or likely, but nevertheless the clinical team would not be surprised if it were to occur, then a discussion about CPR should be initiated…’ (this form of thinking was first used to help identify patients who might be in the last year of life, as part of the Gold Standards Framework).

The NCEPOD study Time to Intervene recommended that a clear decision, either For Resuscitation or Not For Resuscitation, was made for every acute admission. This guideline does not entirely agree,

In its report on cardiorespiratory arrests in hospitals – Time to Intervene – the National Confidential Enquiry into Patient Outcomes and Death (NCEPOD) recommended that “CPR status must be considered and recorded for all acute (hospital) admissions, ideally during the admission process and definitely at the initial consultant review when an explicit decision should be made in this group of patients, and clearly documented (for CPR or DNACPR)”

As noted earlier in this guidance, although the NCEPOD recommends that CPR should be considered for all acute admissions, it does not mean that it is necessary to discuss CPR with all patients admitted to hospital acutely. There are some patients who are dying from an advanced and incurable illness, for whom CPR will not work and for whom a discussion is likely to cause them to suffer harm (see section 5).

The authors of the guideline clearly recognise that early DNACPR conversations are often poor in quality, so they row back from NCEPODs more aggressive approach. This is realistic, but is it too easy on us? Surely our aspiration must be to engage early. Due to the flow of patients through hospitals, form ED to AMU to the final ward, then perhaps to another final ward, (and perhaps even a third if beds are pressurised), the momentum behind the good intention to engage the patient/family on DNACPR can easily be lost. Partial response to therapy may take the pressure off, even though the patient remains at real risk of deterioration.

The idea of causing harm to patients by forcing on them a DNACPR discussion was considered in the Tracey judgement, and it was not regarded very highly by the judge as a reason not to engage. If physical or mental harm is likely, the judge agreed it was not right to have the conversation, but distress alone was not good enough. Therefore, is it not acceptable to shy away from the conversation in the first 48 hours just because it feels unkind. Nevertheless, it is down to us to determine where distress ends and harm begins; if we think our words may hurt, then we must explain our reasoning,

(Section 5) In a minority of cases, trying to explain a DNACPR decision to a patient for whom CPR will not work will impose an unnecessary burden by causing such distress that the dying person suffers harm, which may be physical or psychological… The reasons for not explaining a decision in such circumstances must be documented fully.

 

Conclusions

At first reading this document succeeds in steering clinicians through an increasingly challenging and legalistic area. It highlights the good things in the Tracey/Winspear judgments (respect for a person’s/relative’s right to be involved, where feasible, in life changing decisions) while trying to ensure that common sense prevails. Perhaps it could do more to encourage us to engage earlier, as I do fear that busy clinicians will tend to overlook DNACPR discussions unless there is a strong, external expectation that the subject must not be put off until the next day, or the next, or the next…

 

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New Collection, ‘A Hand In The River’ (click image to explore)

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Introduction to ‘A Hand In The River’

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Click image to explore in Amazon

 

This is the fourth collection of posts from Illusions of Autonomy, and possibly the last. From now on posts will be intermittent and far less frequent.

 

During my medical training I observed many situations that led me to reflect on how I, or my colleagues, had reacted. It was only after two years working as a medical consultant that I felt entitled and empowered to write about those reflections. While explaining the reasons and justifications for my decisions to nursing staff and trainees, I realised that it might be helpful to set those thought processes out in black and white. Recognising that I was personally accountable for the clinical decisions, judgment calls and interactions that took place in my name reinforced the sense that yes, my opinion mattered. No more than any other doctor’s of course, but the satisfaction I derived from recreating difficult situations in a creative way meant that instead of letting those lessons pass by in the endless river of human experience that is a hospital, I dipped my hand and examined the essence of those problems before they slipped out of my palm.

 

Some subjects had nothing to do with my day to day work, but I was driven to write about them from conviction – for example assisted dying. The media driven uproar about care of dying patients and the Liverpool Care Pathway stimulated another stream of articles, from the perspective of doctors whose actions had, I felt, been impugned. The thrill of seeing articles out in the blogosphere led me to broaden my research into other subjects too… hence the wide range of topics in the early days.

 

The process of posting an article, Tweeting the link and seeing it catch fire was massively stimulating. To see the Re-Tweets and ‘hits’ accumulate over a weekend… was addictive. Sometimes posts did not catch fire, and instead spilled from my laptop with a leaden thud. Like all writers, I soon learnt to put these to the back of my mind while I considered the next topic. During the blog’s peak I wrote every week – the most posts I wrote was five in a month. One consequence of moving on to different subjects quickly was that I did not spend much time replying to comments left on the blog – although I think that is an essential part of maintaining a living forum of ideas (this is a tip for any aspiring bloggers – you need to make time to reciprocate). Recently I have scarcely managed one article per month, reflecting the fact that my focus has shifted.

 

So why stop?

 

It may be because I have explored many issues to my satisfaction, and have run out of novel observations. I think a large part of a writer’s drive comes from a desire to marshal their thoughts, much as an adolescent might discuss religion until he or she decides what to believe and want not to believe. Through the blog I went some way to achieving that with regard to medical futility, resuscitation, escalation, assisted dying and candour. However, thinking about things too much can also muddy the waters and leave you in an unresolved soup of ideas… There are no absolutes.

 

Or it may be because my decision to move away from general medicine has separated me from the front line, or the ‘coal face’, where so many complex and demanding clinical scenarios arise. The patients I see now (as a specialist in a tertiary centre) are sometimes medically more complex, but younger, less frail, and generally further from death. The pressure to see huge numbers of medical patients has given way to a different kind of pressure, that of working out how to help a selected, smaller group. Giving up general medicine has allowed me to focus on the areas that I most enjoy, but the price to pay for that may be a diminished entitlement to comment on situations that continue to challenge colleagues on the general wards.

 

Whatever the reason, I look back on those four years of blogging with pride, and gratitude to those who gave me positive feedback. There is a deep well of generosity out there, 99% of it in colleagues I have never met but who came across the posts via social media and took the trouble to read and comment. The most critical comment I received was ‘more navel gazing from Dr Berry…’ That is so true! Everything on this blog came from examining other people’s misfortune through the prism of my own emotions and responses, while hoping that the ideas I recorded would chime with a wider audience. Generally, they did.

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Collected posts volumes 1-3

DNACPR, The Secret Known To All

Why am I vexed when I wake up to the news that 40,000 dying people have DNACPR orders ‘imposed’ on them without their direct agreement or discussion with their relatives?

It sounds reasonable, doesn’t it, to expect 100% compliance with the expectation that DNACPR be discussed openly, especially after the Janet Tracey judgment which ruled that not to do so was a violation of human rights.

I hadn’t read the Royal College of Physician’s 100 page audit from which this story was extracted, but I have looked at it now, and it doesn’t mention 40,000 patients. 9302 deaths were audited, so the headline figure was an extrapolation, made real in newsprint. OK, so it may be fair to extrapolate. But what did the audit actually show?

Like all audits, it was a paper exercise. If a discussion wasn’t documented it was assumed that it hadn’t happened. The chair did say, when interviewed, that ‘busy doctors’ might not have had time to make notes, but that excuse doesn’t hold up – especially not in court. All trainees know that.

Focussing only on the DNACPR decisions (just one section of the audit), it appears that they were discussed with 35% of the patients. The reasons given for not discussing are all reasonable (unconscious, lack of mental capacity, a request that it not be shared with family), but in a worrying 16% no reason was given (961 cases). Were these documentary omissions, or medical teams making unilateral decisions and not being bothered to get the views of their patients? Well, I know what I think, but I suppose we cannot blame for Telegraph and other commentators for at least highlighting the finding. One way of making this more eye-catching is to extrapolate to 40,000 across the nation and visualise whole cohorts of frail patients being ‘written off’ with little thought.

So, if doctors couldn’t discuss it with patients, did they contact the families? The question asked was; ‘Is there documented evidence that the cardiopulmonary resuscitation (CPR) decision by a senior doctor was discussed with the nominated person(s) important to the patient during the last episode of care?’

Answers:

  • YES 78%
  • NO 18%
  • ‘NO BUT’ 4%

If ‘NO BUT’, it was recorded that ‘There was no nominated person important to the patient’ in 47% and ‘Attempts were made to contact the nominated person important to the patient but were unsuccessful’ in 53%

This still means that in 18% of cases DNACPR was not discussed with relatives and no decent reason was given. I am a bit confused about whether these 18% include any of the patients with whom DNACPR was discussed directly. If so, there is less of a problem, as the primary responsibility of the medical team is to communicate with the patient if that is possible. The kind and thoughtful team will of course discuss it with the family (or at least let them know), but if the doctor-patient discussion has been documented there is less of a ‘legal imperative’ to document wider discussions. It is good practise, these discussions are important, but they may not bring a doctor to sit down with the notes and scribe a separate report.

*

Reading the audit, which covers many other areas, I realised that much of my annoyance at the media coverage was because it had honed in on DNACPR as the most important, almost sacred, aspect of EOL care. It isn’t. DNACPR documentation is there to stop a patient being treated inappropriately after natural death. It imposes nothing. It is absolutely necessary if expected death is not to be undignified by unfamiliar hands working to a universal protocol. Yet, for all the other measures of quality that this large audit investigated, it was the only one to hit the front page. This appears to be driven by a continuing lack of trust in some quarters that doctors on the wards are making decisions for the right reasons.

The word in the Telegraph headline that got me was ‘secret’. This is loaded with maleficence and illustrates the depth of misunderstanding. DNACPR is a decision taken when death is expected or it is clear that the heart could not be restarted if it were to stop suddenly, but it is not a decision that materially influences the length of life. It does not in itself influence survival, because it concerns a posthumous act.

This is why I find it difficult and artificial to finish an otherwise transparent, comprehensive and satisfactory EOL discussion with the phrase, ‘And when she does die, when her heart stops, we would not want to try to resuscitate her. I mean, I will put a form in her notes to make it clear that the crash team should not be called should it happen in the middle of the night, when we aren’t here… a DNR form. You’ve heard of those?’

How many times have I seen confusion on the faces of my patients’ relatives at this point? After twenty minutes of careful scene-setting and descriptions of how the palliative care team might offer further support, I bring up cardio-pulmonary resuscitation. Why? It’s not relevant to the situation. It’s not relevant to the dying patient. But it must be discussed. And I must be clear. If I do not set aside a few minutes to discuss DNACPR specifically, however much I have dwelt on the issue of dying, I will be keeping it ‘secret’, even though the patient’s terminal condition is known to all involved.

Although death may have been explored, DNACPR – a denial of death, a commonly futile struggle against natural disease – requires its own time. As you can tell, I find this difficult. Perhaps those who did not document things clearly in the audited notes found it difficult too. Perhaps they didn’t have the confidence to insert DNACPR into the conversation. Perhaps they regarded DNACPR as the least important thing for their patient. (Post-Tracey, that is somewhat naïve.) Or perhaps they thought they knew best and drifted through the ward in paternalistic secrecy – that would, in Professor Ahmedzai’s words, be ‘unforgivable’, but I don’t believe this harsh judgment applies to many.

Whatever the reasons, the message is clear – bring it up, talk about it, even it feels uncomfortable, and document it.

 

 

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The Clean-Up operation

clean up

 

Julia had told the story of the heartless consultant many times. How he, a paternalistic but highly regarded specialist, broke the news to a patient that he had cancer in an overly matter of fact way before walking away from the bed, and, within earshot, saying, “Hopeless!” to the rest of the team.

Julia, very junior back then, thought the patient, Mr Field, had probably heard the comment, or at the very least seen the slow shake of the consultant’s head that accompanied it. The patient stared across the ward, and seemed to be analysing the half-caught words and the potent gestures, trying to calculate their significance for him. Julia attended the rest of the ward round diligently, but was distracted by the thought that Mr Field must be in some distress. She wanted to go back and check; what did he hear, what effect was it having on him…?

So at the end the ward round Julia rushed back to Mr Field’s ward and asked if she could speak with him. He agreed of course. Julia pulled the curtain round and asked, in the most open way she could, what Mr Field had taken away from the ward round. He knew he had cancer, and he knew what this meant – it had spread, it was incurable if not untreatable.

“And did Dr ________ say anything that worried you particularly?” asked Julia.

“No, not really, though I’ve got a lot more questions. He was quite brief.”

Thank God! Relief. He had not overheard the callous comment. Now Julia found herself in a tricky position. She had come back to ‘clean up’ the mess caused by her careless consultant, but in fact there was no mess to clean up. And to be honest Julia did not have the knowledge to answer all of Mr Field’s questions about treatment options and prognosis. She cursed herself for interfering, and cursed her consultant’s behaviour for driving her to come back and check.

Julia was used to coming back to patients – for the ‘clean-up’. Answering or mollifying patients and relatives after a consultant’s cameo performance, a mixture of information-avalanche from a great height, bedside teaching, and a communication style that did not meet the needs of the patients. She didn’t mind… the consultant couldn’t really be expected to deal with every query and anticipate every nuance of his patients’ particular psychological or social circumstances, especially in a limited time-frame. His phone was always going off, he was always late for some committee, he had high level responsibilities in the Trust that clearly occupied his mind when he was supposed to be focussing on individuals. He wasn’t that bad… just a bit thoughtless during the one-to-one sometimes.

Nevertheless, Julia walked away from Mr Field’s bedside and swore that when she was a consultant there would be no such faux-pas.

Some years later Julia became a consultant. She made sure that her ward rounds were protected from other business and worked hard to relate to the patients. At the same time she acquired other responsibilities and developed as a clinical researcher. One day, eighteen months after becoming a consultant, she was on a ward round. A 72 year-old woman with advanced lung disease had developed an ‘acute abdomen’, likely dead bowel. The surgeons weren’t keen to operate, but she would certainly die without it. Julia, a chest specialist, reckoned the risk of dying after surgery, from lung complications, was 40-50%. A classic ‘rock and a hard place’ situation. Julia went to see the patient, who was alert and understood everything. Just before entering the cubicle Julia’s phone rang – she answered. Another patient whom she hoped to enter into a research study had arrived downstairs for the final consent meeting. Julia had another important commitment, a one off, in half an hour. The morning was getting tight. She entered the cubicle and explained the situation. Certain death vs a 50% risk, if we can get an anaesthetist… so what do you think? Will you agree to surgery? The patient looked away, unsure, confused. Julia glanced at her watch – just a tiny tilt of the head.

“OK… Mrs Taylor… it’s a hard decision, we’ll leave it a little longer for you to think about it… perhaps wait for your family to arrive, discuss it with them.”

Julia left. Her team followed her, not sure what the next step was. Julia looked at her registrar,

“Can you come back in an hour and try to reach a conclusion, I’ve got to get going.” Then she walked away, her registrar by her side, and added,

“To be honest Diane, I don’t fancy her chances either way. Fifty percent may be optimistic. But the choice is… definitely die, or probably die. It’s a pretty hopeless situation.” As she said this a young man in everyday clothes passed them. He paused, then moved on.

Julia saw her research patient and attended her meeting. Then she walked back up to Mrs Taylor’s ward. There she found her registrar, SHO and a ward matron in with the patient, who was crying, and her son – the man who had walked passed her – bowed over the side of the bed holding his mother’s hands. Julia backed off and asked another nurse what was happening. The nurse replied,

“After your ward round we heard lots of crying… apparently one of the family overheard someone saying it was all hopeless… we had to get your team up to calm everything down, they’ve been here for an hour.”

Julia stood by the nurses’ station and looked into the bay. The clean-up operation was in full swing.

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