Switch it off

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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Introduction to ‘A Hand In The River’

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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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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.

The Clean-Up operation

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.

***

Observations on the Emergency Care and Treatment Plan

The Emergency Care & Treatment Plan, developed by the Resuscitation Council, is out for public consultation. It is hoped that going through this with patients or their representatives will lead to fuller discussions and earlier decisions regarding levels of care and resuscitation.

Speaking as a clinician, it is a welcome development. It marries two strands of decision making that have too frequently been separated – escalation and resuscitation. For patients at risk of deterioration the headline decision has always been about CPR, because there is a ‘form for that’ (I am not being facetious), it is a binary process (For CPR or Not For CPR) and the harms of inappropriate resuscitation are very visible. Escalation is a more nuanced issue, harder to explain to patients and harder for medical trainees, and sometimes consultants, to get their heads round. It is often neglected until the patient has begun to deteriorate, at which point a flurry of activity is triggered. Families are called in for rushed discussions, intensive care teams summoned to give their opinion about the appropriateness of organ support, consultants in charge are phoned in clinic to make a final decision… and the patient is often too ill to be involved at all. To have these eventualities anticipated would be so helpful, but because no one really knows what is going to happen in the future, or what treatments might be needed, making specific plans is a major challenge.

The ‘easy’ scenario contains the alert patient with acute illness that is not life-threatening in the very short term. There is time to explore their wishes, anticipate possible deterioration and judge potential interventions against their likely benefits and burdens. The more vexing situation involves the acutely ill, frail and elderly patient with temporary or permanent cognitive impairment. They may or may not be accompanied by a close relative or other representative. The atmosphere may be hectic and distressed. Often, despite the patient’s extreme age or clear frailty, the possibility of dying will not have been considered or discussed at home. How to approach the proposed ECTP form?

The form has three boxes which signify the patient’s preferred approach to management. Based on a combination of the patient’s medical condition, prognosis and spoken or reported wishes/goals, it is necessary to choose one of them.

There is a great deal of overlap. Even if the ‘priority is to get better’ (Box 1), a parallel priority of equal importance is ‘comfort’. I would want both, personally. It is interesting how these boxes reveal the fact, not necessarily understood by patients, that medical interventions can come at a price – discomfort or distress. Prolonged dependence on say, a ventilator, is of course appropriate if you are a 35-year old with severe pneumonia, but not if you are 94 with advanced fibrotic lung disease. So who will go for box 1? The young, the middle aged, the previously well… the minority of our admissions. In fact many in this category would not require a ECTP, because it is so obvious that all available interventions should be considered.

And box 3, at the other end of the spectrum? This will be for patients with clear life-limiting conditions, some of whom will have anticipated dying (eg. metastatic cancer not responding to therapy, or advanced cardio-respiratory disease), and some of whom will voice their desire to be kept comfortable and not be interfered with. For the doctor and patient to choose box 3 will require a degree of surety, for it leads to a palliative approach. It signals to other medical teams that medical care should not be escalated. Such surety is quite rare, and box 3, like box 1, will probably account for a minority of patients.

So Box 2 is for the majority. It emphasises both efficacy and comfort. By initialling Box 2 the doctor and the patient will need to think about what treatments to include and exclude. How do you work out what treatments would and would not be wanted? There are many treatments, and for patients they are hard to visualise.

The major, relevant categories that come to my mind are: mechanical ventilation, dialysis/haemofiltration, central line insertion, non-invasive (mask) ventilation, feeding tube insertion, intravenous fluids, intravenous antibiotics… there are many more. It is the doctor’s job, in completing this form, to decide what is relevant to the situation, what should and should not be explored, and to advise on what should and should not be done. All this is in a humane way that does not force the patient to visualise themselves in various situations, or reflecting overmuch on their possible death (which is just not kind after a while).

Doctors develop and use acronyms and stock phrases on the forms that they use. It is not lazy, more a tendency to encapsulate complex concepts in an easy to replicate manner. I think it is unlikely that doctors will list specific treatments exhaustively under box 2. Much more likely they will use catch-all terms like ‘not for escalation to ICU’ or ‘not for artificial hydration and nutrition (ANH)’. Specific positives, like ‘for trial of mask ventilation’ or ‘consider trial of circulatory support’ are a possibility.

Such written indications, if understood and agreed to by patients or families, will be very helpful to on-call medical teams and are the great potential benefit of the ECTP. But to achieve this aim requires considerable skill and experience on the part of doctors. These conversations, which I agree are to be welcomed and necessary, will be long, delicate, and complex. Doctors will need to help to develop effective but sensitive techniques to facilitate and lead the discussions. It will take time, serious time. But if it can be done, I think it will bring about the engagement and shared decision making that has often been missed due to the unanticipated and uncontrolled deterioration that will always occur in hospitals.

A public survey on the ECTP is open until 29th February

I recommend Dr Laura-Jane Smith’s constructive blog post on this subject; if any of my comments overlap with hers I apologise!

‘That’s not my area’

An account, written for the Guardian by an elderly patient’s daughter, described how nobody treated her as a complete person in hospital.

“Nobody will look at the whole of me,” my mum said on her third stay in hospital this year. “It’s like a department store. You go to a bit of it and they say, ‘Sorry we don’t do that here. We just look at this.’ Nobody is interested in my legs.” Her legs were massively swollen, dry and cracked and purple-black by this time.

It was a heartfelt cry for holistic care. And it touched a nerve in me, because I have heard and received similar accusations in my role as a hospital consultant. It got me thinking – What is expected? What is it that patients want?

The answer might seem obvious: Doctors and nurses who do not focus on individual systems or organs. Teams who address their patients with respect, as people with a past, a social existence, a meaningful and self-determined life lived for many years before circumstances forced them through the door of the hospital. All lovely… but what specifically? Patients want their thoughts and ideas heeded, their opinions acknowledged and taken seriously while treatment plans are formed. They want medically ‘trivial’ complaints given as much time as major diseases, as it this these that can irritate or reduce quality of life just as much. They want clear feedback on the innumerable tests. They want to know the plan and comment on it. They want to know how long it will all take. These considerations do not seem revolutionary; they seem nothing more than… decent. Nevertheless, it seems that we often fail in delivering such unspectacular aspirations.

As a consultant I am always careful to explore the broader reality beyond the defined limits of the specific organ or bodily system that has broken down. Well I try to. This approach is not entirely consistent, because there are times when a rigid focus on the area of danger has to be maintained. Patients and families understand this, I am sure. If the patient is bleeding rapidly from an ulcer, or crashing with heart failure, I may fail to probe the subtleties of their understanding and defer the social enquiries. Later, when things have calmed down, there may be time to develop a more three-dimensional understanding of the whole person.

There are other reasons why medical interactions in hospital may not feel holistic. Hospitals work by bringing specialists to the bedside in order to answer specific questions. The frail and elderly patient who has fallen, and who has multiple symptoms related, say, to a failing heart, diseased lungs and arthritic knees, might be found to have a blocked kidney. The opinion of a urologist is sought. Only he or she can give an expert view on whether an intervention is required to unblock it. They arrive at the bedside. They are pleasant, they are caring, but they have one thing on their mind – to answer the question. They will take all the facts into account; the frailty, the risks of anaesthesia, the opinion of the patient, the opinion of the next of kin if they are present (and especially if there is dementia), but they will stay focused on the urological issue. And should the patient, at the end of the consultation, ask if anything can be done about her painful knees, the urologist may well say those fateful, unpopular words, “I’m sorry, that’s not my area.”

All specialists have said this. It is no good pretending to be able to give an answer to the question. One can express an interest, but it is little more than a politeness to do so. For the knees, if symptoms cannot be controlled with simple analgesics, you need a rheumatologist or an orthopaedic surgeon. Another specialist. Another visit. Another focused consultation. Another floor in ‘the department store’, as said in the Guardian article.

How to make these consultations happen without leaving the patient feeling like the chap in the picture above who has his organs picked out, examined and put back again? Perhaps it’s about presentation and coordination. What I would want is a lead physician who comes round and sums it all up for me. Who draws specialists in to the ward when required, who assesses the advice that is given and sifts it for common sense. And in addition, perhaps, an experienced nurse who can answer some of the questions I feel too inhibited or embarrassed to ask the doctor when they came round. Like, ‘What is a urologist anyway?’

That sounds like a fair model. It is a clear aspiration, as summarised in the Royal College of Physicians ‘Future Hospital’ commission report;

Patients will receive the best specialist care wherever they are in hospital. For patients with multiple and/or complex conditions, there will be input from a range of specialist teams according to clinical need, with a single named consultant responsible for coordinating care.

It seems we are not there yet. ‘Hospitalists’, general internists who take an overview and coordinate care, may be the answer. In the meantime, geriatricians will often assume the role, for it is patients under their care who typically have multiple problems.

So finally, in response to the Guardian article, while I recognise only too well the phenomenon of ‘that’s not my area’, and admit that much specialist work does occur ‘in siloes’, I do not accept that patients are routinely managed in a non-holistic way. It’s not what I see happening around me. Most hospital care, I would maintain, is delivered in context, and with an eye to the complete picture.

***

Instant E

After 13 hours of almost constant work I got home and fell asleep at 11.30PM. At 1.30AM the phone rang. I answered, to hear about a patient vomiting blood in resus. He was jaundiced. This was going to be a variceal bleed, and I had to go back in. The thick nausea that accompanies interruption of deep sleep, with the last, hastily eaten meal still heavy in my stomach, brought out the worst in me. I had plans for the following day; I would be useless now. The night was gone. It would take hours to get in, get to theatre, do the endoscopy and get away again. I hated the patient for doing this to me. I imagined him – an alcoholic, no doubt, who had binged and taken another self-induced hit to liver. Now he was now suffering the consequences. In the middle of the night.

As I sped down the almost empty motorway and let cold air in to blast away any residual mental fog, I anticipated my attitude. It was going to be business like. No way was I going to be touchy-feely – there was a job to be done: get the patient anaesthetised, look inside, seal the bleeding point, get out, get home. Then sleep. Sleep.

The white-light glare of the resus bay rekindled any neurons that had not been required to drive the car. I read the casualty card notes and glanced across from the doctors’ station to the relevant cubicle. The curtain was drawn.

I walked in boldly. He was awake, but groaning. There was blood on his chin and in the bowl that he grasped to his chest. He had all the signs of cirrhosis.

“Hi, I’m Dr _______. What happened?”

“It just started doctor.”

“Have you had liver problems before?”

“Not like this.”

“But you’ve been told there’s a liver problem.”

“Oh yes, years ago.”

“Due to alcohol?”

“Of course.”

“Any hepatitis infection, anything like that?”

“No.”

“And… the drinking, have you been drinking recently?”

“Yes. Every day…”

Really? – I thought to myself. You know your liver is scarred and shriveled yet you carry on. I just don’t get it.

“How much, recently?”

“Two, three bottles a day.”

“Wine? Cider?”

“Wine.”

“Right. Well, I’m sure you’re bleeding from a ruptured blood vessel in your gullet, we need to put you to sleep for a bit and do a camera test.”

“OK.”

I presented him with a consent form, and muttered about the risks and the benefits. He signed, an uncoordinated scrawl. I walked away, but he had more to say,

“I knew this was going to happen. They told me. Ever since I started drinking, after the accident…”

And then he told me why. Why he had taken to alcohol. The industrial injury, the chronic pain, the enforced retirement, the gap… the gap in his life. My tiredness melted away and the focus, on my own discomfort, was re-directed. Just a few words was all it took. Context. The story. The reasons.

I approached the bedside and spent a little more time telling him what would happen. The possibility that things could go wrong when I was trying to seal the bleeding point, that he might have to stay on ICU, might be transferred for a shunt up in London, might die. He nodded. It wasn’t news.

“Got any family?” I asked.

“Yes. But not here.”

In the car on the way home, as dawn nudged its way under the edge of night, I felt good. The job was done. The sense of satisfaction was high. But for that hour after I was woken I did hate him, in a way. I wished he didn’t exist. But that was when I didn’t know him. He was a name in a cubicle half way down the motorway. At that moment there was no context, and therefore no empathy, only a natural and not unusual reaction to being woken up. It was the situation I hated, not the man. Before I arrived there was no man, only a problem.

So who’s interested in the reactions of a grumpy forty-something old who’s getting tired of being on call? You’re paid for it! You get a 5% supplement for being available to come in for emergencies. Get over it!

Well, it is important to examine the reaction to fatigue and disturbed sleep, because it is at these times that patients see the worst of us. The veneer (is just a veneer?) of compassion is often tarnished in the early hours of the morning, or with the hangover of a recent sleepless night still lingering in the system. The trick at such times is to know how to access the human in ourselves. For me, nowadays, such interruptions are rare and anti-social hours are few. Back in the day when I roamed the wards in the early hours I frequently transformed into a ‘technical’ doctor, asking closed questions, focussing on defined tasks and having no spare resources with which to make human connections. It is a biological inevitability – we are less human when we are supposed to be in bed. Yet a third of our patients’ lives are lived between midnight and 8AM. We have to find a way to be nice at those times. How to do this? In the case I describe it was by imagining a life disrupted by external events, and the undeserved downward slide into addiction. What if that happened to me? A window into another person’s unlucky life, mixed with a dash of imagination – two elements that when mixed can produce instant empathy.

Note: I have changed details in the patient’s personal history

New website: http://www.philberrycreative.wordpress.com

Sparks of wisdom

sparkle

The judgement regarding C’s right to decline life-preserving dialysis (following a paracetamol overdose) is as fascinating and instructive as it is tragic. I have taken out some phrases and sections that caught my eye, adding my own comments along the way. The judge’s words are in italics, quotes from witnesses in quotation marks.

Character sketch

The judge begins with a remarkably vivid but moralistic, almost scornful character description (both in my view, and that of Guardian writer Zoe Williams). It sets the scene for C’s subsequent strong-willed approach to decision making.

C has led a life characterised by impulsive and self-centred decision making without guilt or regret. C has had four marriages and a number of affairs and has, it is said, spent the money of her husbands and lovers recklessly before moving on when things got difficult or the money ran out. She has, by their account, been an entirely reluctant and at times completely indifferent mother to her three caring daughters.

Previous decision making

C’s response to previous illnesses is explored. Her behaviour back then is important, because the judge draws a line from the past to the present; if she had capacity to make medically eccentric – or unwise – decisions then, why not now?

Upon being diagnosed with breast cancer in December 2014 when aged forty-nine V relates that C expressed the view that she was “actually kind of glad because the timing was right”. It is recorded in C’s medical notes that she did not want to discuss the benefits and risks associated with chemotherapy but was “keen not to have any change in size or deficit that will affect her wearing a bikini”. She refused to take medication prescribed for the disease because “it made her fat”. There appear to have been no concerns expressed regarding C’s capacity in this context.

Her daughter comments:

“My mother’s values, and the choices that she made have always been based on looks (hers and other people’s), money, and living (at all costs) what she called her “sparkly” lifestyle…her life was, from her point of view, a life well lived. I have never known her express regret, or really to take responsibility for anything, including the choices she has made”.

Prognosis and treatment against a person’s will

Onto the testimony of the professionals. A specialist explains that the likely prognosis,

‘remains excellent with survival fully anticipated’. However,

Dr L estimates that if C’s [renal function] is not fully recovered within a period of three months, later recovery is unlikely, with the chances of delayed restoration after three months estimated at less than 20%. In such circumstances C would require long term renal replacement therapy.

i.e. – if her kidneys don’t get better soon, she is looking at a life of dialysis three times a week.

If she continues to refuse dialysis, is it possible for her to be made to have it?

…in order to dialyse C against her will she would need to be sedated with that sedation being heavy enough to render her, essentially, unconscious for the duration of the dialysis. In order to achieve this safely the procedure would need to be undertaken in a high dependency setting. There are, of course, risks associated with heavy sedation, including respiratory depression and low blood pressure which may in turn necessitate further intervention including intubation and ventilation.

This illustrates how, despite all the theoretical discussion about capacity, at the end of the day a patient can easily turn away from treatment that she does not want. We see similar situations in general medicine, for instance when elderly confused patients without capacity are deemed (in best interests meetings) to be appropriate for nursing home or residential home. If they don’t want to go, they won’t!

Unwise decisions ≠ unsound decisions

The wisdom of C’s decision making leads to an interesting discussion. The judge clarifies that a person who makes an unwise decision which appears so ludicrous as to be, in our eyes, evidence of a disordered mind, cannot be assumed to lack of capacity;

…the fact that a decision not to have life-saving medical treatment may be considered an unwise decision and may have a fatal outcome is not of itself evidence of a lack of capacity to take that decision, notwithstanding that other members of society may consider such a decision unreasonable, illogical or even immoral, that society in general places cardinal importance on the sanctity of life and that the decision taken will result in the certain death of the person taking it..

Capacity is actually, in the words of a previous judge, “the capacity actually to engage in the decision making process itself and to be able to see the various parts of the argument and to relate one to another”.

Thus, …a person cannot be considered to be unable to use and weigh information simply on the basis that he or she has applied his or her own values or outlook to that information in making the decision in question and chosen to attach no weight to that information in the decision making process.

Too close?

Now the judge, having heard testimony from medical staff who looked after the patient, questions their ability to assess capacity objectively.

…the court must be aware of the difficulties which may arise as a result of the close professional relationship between the clinicians treating, and the key professionals working with… in cases of vulnerable adults, there is a risk that all professionals involved with treating and helping that person – including, of course, a judge in the Court of Protection – may feel drawn towards an outcome that is more protective of the adult and thus, in certain circumstances, fail to carry out an assessment of capacity that is detached and objective.

Presumably he is saying here that a group of clinicians who have invested so much effort and expertise is ‘saving’ a patient are not the best people to comment on whether it is right for that patient to make a decision that will lead to death. This I find controversial, but is of course why clinicians must send such difficult cases to the Court of Protection.

Psychiatrists vs the judge

There follows some detailed analysis and comparison of psychiatric reports, focussing on a possible personality disorder, and on C’s ability to retain information and weigh it up (critical elements of mental capacity). C is said to express an “an overvalued idea that her quality of life will not improve and that she can die in a hospice.” A psychiatrist “…was concerned that the main driver of C’s decision appeared to be her categoric belief that the timescale given to her for recovery had passed. C considered that this meant she would not recover and did not want a lifetime of dialysis.”

The psychiatrist concludes that “She is unflinching in her belief about this. I think this could be significantly influenced by her personality traits and as such are affecting her ability to use and weigh evidence presented to her thereby affecting adversely her ability to make a capacitous decision.”

In addition, again according the psychiatrist, “This unexplained and seemingly irrational decision is not met with significant using and weighing demonstrably ending with a capacitous but objectively assessed unwise decision.” C is unable to take “a balanced, nuanced, used and weighed position”.

Junior doctors – every note counts!

Now reference is made to notes made by junior doctors on the team. I found this interesting because it reinforces the point that the opinion of any qualified person has value and may be used in such complex cases. The judge refers to notes made by SHO’s several times, and these notes, being supportive of the judge’s final conclusion, were clearly important. For instance,

On 18 October 2015 Dr K (SHO) considered that C displayed capacity when expressing her wish to forgo further treatment and to move to a hospice. On 19 October 2015 Dr V recorded that C displayed signs indicative of capacity (understanding, weighing up, retaining and repeating information) although capacity was not clear cut…

And,

C was recorded by Dr O (Liver SHO) as being clear in her understanding that without dialysis, adequate nutrition and treatment of her liver she would die and, within that context, as being able to take in the medical advice and fully understood the risk of refusing treatment.

The patient’s words

What of C’s account. At one point she said,”I know that I could get better; I know that I could live without a health problem, but I don’t want it; I’ve lost my home; I’ve lost everything I’d worked for; I’ve had a good innings; it’s what I have achieved.”

And,

“I don’t want to do weeks or months of this…I have been through horrible stuff. I am not prepared to do that again. They are doing their best to do everything they can for me and unfortunately that is not what I want”

“I am not prepared to wait for the possibility that my kidneys will get better”

“Everything is ‘ifs and ands and pots and pans’. My quality of life won’t be what I want. I will be a burden”

“No, I’m not going to have weeks of this. I am at peace with myself”.

“I want someone to say I can’t do this anymore. Everyone makes a choice. It would be nice if they could give me some choice. I am not getting any choice. I am getting wheeled along. It’s a bit unfair.”

Burdens

The judge then explains his interpretation of the ‘risks’ (or burdens) of ongoing treatment;

These reasons include the risk of a life lived on dialysis, the risk of long term disability, exhaustion with treatment and her wish not to endure further weeks or months of the same, her wish not to continue to endure the symptoms and pain associated with treatment, the risk she will not be able to attain her former lifestyle, her desire not to get old and lose her appearance and her wish to attain her original goal of ending her life.

The importance given to wider goals, beyond survival, is a particularly interesting point.

Then,

That C considers that these factors outweigh a positive prognosis and the chance of life that it signals may not accord with the view that many may take in the same circumstances, and indeed may horrify some…

C has an impairment of, or a disturbance in the functioning of, the mind or brain, the evidence as to the precise nature of that impairment or disturbance was far from conclusive. Further, and more importantly, with regard to the question of causation, and in particular whether what was being seen might be the operation of a personality disorder or simply the thought processes of a strong willed, stubborn individual with unpalatable and highly egocentric views the evidence was likewise somewhat equivocal.

Finally, I of course bear in mind that my decision does not accord with the considered opinions of two very experienced psychiatrists.

Conclusions and reflection

The judge finds that,

As a capacitous individual C is, in respect of her own body and mind, sovereign.

Accordingly, although rightly brought, I dismiss the application of the Trust for declarations under the Mental Capacity Act 2005.

What should healthcare workers take away from this? It’s an extreme case which was resolved in the venue of last resort, the Court of Protection, so it is unlikely that its lessons are translatable into everyday practise. So how does it help medical professionals when they find that their advice begins to diverge from the stated goals of the patient? The first instinct, when patients ask for things that make no sense, is that they are not right in the mind. Their capacity becomes questionable. The judge here provided an interesting analysis of how assessment of capacity can become circular: her goals are not consistent with a sound mind, therefore we must doubt the mental processes that have developed those goals.

Secondly, I find myself feeling for the clinical team. It is easy to criticise them for ‘taking it all the way’ to the courts, and for allowing themselves to engage in a legal battle with the patient. I don’t read it this way. The preservation of life was of course their primary aim during C’s acute illness, but as it became clear that she did not want ongoing life-preserving interventions what else were they to do? Accept it straight away? Try to persuade her – at risk of being seen to coerce her? The decision is too huge, the outcome too profound, for doctors to take the burden on themselves without legal help. In the end the judge made the decision, and that sounds right. He is above criticism, legally (probably).

Another point – the significance of the SHOs’ notes. Junior doctors, as we all know now following recent contact issue, are not so ‘junior’ as to see their opinions and observations overlooked. Here, they featured as prominently in the judgment as two consultant psychiatrists.

Finally, as a supporter of assisted dying, I cannot help but make comparisons with the current legal position for terminal ill patients. The judge’s great respect for personal ‘sovereignty’ – the right of protection from interference on one’s person (e.g. a dialysis catheter), would appear to add legal weight to other patients’ rights of autonomy and control over their own deaths. But no: while this judge concludes that no-one has a right to extend C’s life against her will, no judge in the land would conclude that she had the right to pro-actively end her own life, or be assisted by a physician. Sovereignty does not help there.

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