Assisted dying – duty and conscience

 

However far Noel Conway’s legal challenge to permit a medically assisted death goes, it represents, I believe, a particularly strong wave on the rising tide of argument that will eventually overcome the status quo. Minds are changing, supportive views are being revealed.

A recent letter in The Times from Dr David Nichol, a neurologist and former opponent of assisted dying (AD), describes how a friend who received ‘exemplary palliative care’ nevertheless requested an assisted death in Belgium. In 2016 Sir Richard Thompson, immediate past-president of the Royal College of Physicians, stated his support. Well before that, Prof Sir Graeme Catto, former president of the General Medical Council, became chair of Dignity in Dying. In 2014, George Carey, former Archbishop of Canterbury, dropped his opposition to AD, saying, “The old philosophical certainties have collapsed in the face of the reality of needless suffering.”

Waves on a rising tide? Perhaps. And they make me wonder – how will the NHS respond should AD become legal?

Baroness Finlay wrote a cautionary essay with the title ‘What if ‘assisted dying’ were legalised?’ last year. This was grounded in the ‘legislative drift’ that some feel has occurred in the Netherlands, where patients with non-terminal and cognitive or mental health problems have requested death.

‘Increasing numbers of people are having euthanasia because of psychiatric illness (56 cases last year) or dementia (109 cases last year). In 2015 doctors agreed to administer euthanasia to a woman in her 20s suffering from post-traumatic stress disorder and ‘therapy resistant’ anorexia nervosa. Some Dutch campaigners want suicide drugs to be available to people who are not ill but just ‘tired of life’ ‘

Nevertheless, the latest country to legalise AD, Canada, has seen over 1300 people choose ‘medical assistance in dying’ (MAID). The divisions and uncertainties that have arisen within the medical community there are worthy of our attention. The specific areas I would like to examine are a physician’s duty to offer AD as a therapeutic option, and the morality of conscientious objection.

 

The duty to discuss

Mara Buchbinder explored the ‘physician’s duty to inform’ in a recent article, suggesting

‘…that we should not take for granted that communication about [assisted dying] ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves.’

So how and when should doctors bring up the subject, if AD were to become legal?

Otte and colleagues interviewed 23 GPs in Switzerland, and identified several factors that appeared to inhibit communication about AD. These were divided in three broad areas: concerns about personal psychological well-being, conflicting personal and religious values and perceived conflict with their understanding of the physician’s professional role. Perhaps it is an obvious comment, but if AD were to become legal, we must accept that doctors will vary greatly in the emphasis and frequency with which they mention it as an option.

I can imagine both active and passive approachs. The active approach might involve presenting AD as an option from the moment terminal disease is diagnosed. Then, later (perhaps when a certain burden of symptoms had accumulated and treatment was manifestly failing) doctors might remind patients that the option still existed.

The trouble with this approach, to me, is that we would be emphasising the ultimate futility of life-extending therapy from the very outset. It is nihilistic. However, as Roger Ladouceur noted in a personal article in the Canadian Family Physician, ‘Today is too soon and tomorrow might be too late’ – a deteriorating patient can sometimes lose the strength or mental capacity to engage in discussions once they have entered the late phase of illness. If are to be followed through, should be made when patients still have to ability to direct their care.

In contrast, a passive approach might involve patients being informed once about the possibility of AD, perhaps by letter, of in a leaflet displayed in waiting rooms (‘…on being diagnosed with a condition associated with a prognosis of less than six months, you have the right to request a medically assisted death.’) – but after that no reminders would be given. In this case, only patients with a fairly developed opinion on the subject would take things further. Patients vary greatly in the way they explore options, and for many, only those that are put on the table, explicitly, are discovered.

A pathway to a medically assisted death shown below, from Ontario, begins with an enquiry from a patient.

AD (or MAID) is, clearly, patient driven (for it to be otherwise would be absurd), but there may be parallels with DNACPR conversations here. If the issue of resuscitation is left to doctors to bring up ‘when the time seems right’, it is often not all. Just as efforts are being made to bring DNACPR within more general discussions about limits of care, and to ensure that these discussions happen early on, perhaps AD will also to be presented ‘routinely’ following certain diagnoses. There is a fine line between ensuring knowledge of, and fair access to AD, and being seen to encourage it. This ethical high wire is one that would have to be traversed.

Given these concerns, the NHS would need to develop an agreed, uniform approach. As in many other clinical areas, the details would probably be devolved to individual Trusts and CCGs. Therefore, the first thing I see happening after the legalisation of AD, is a letter from the Department of Health and NHS England requiring Trusts to develop local protocols. Presumably, within secondary care, the responsibility will fall to committees comprising palliative care consultants, oncologists, neurologists and other involved specialists. However, given that AD is usually provided outside the hospital (this bring part of its appeal), primary and community care would have to be well represented. Some will be reluctant participants –  but the details regarding access and personnel will have to be described.

Some will object and remove themselves from the process.

Some may privately determine not to mention it to their patients at all – they will be ‘conscientious objectors’.

 

Conscientious objection

In Canada, the Supreme Court has already found that blocking access to MAID is ‘unconstitutional’, thus a conscientious objector, although not compelled to take part in it personally, must not prohibit a patient’s access to it. They must provide all the necessary information if requested, and ensure an ‘effective referral’. However, there are bound to be degrees of engagement, and the debate over whether it is justifiable to object at all has been raging.

In response to a paper by Christopher Cowley  (£) defending the right of doctors to refuse referral for AD, Julian Savulescu and Udo Schuklenk wrote a pretty blistering article (free) – ‘Doctors Have No Right to Refuse Medical Assistance in Dying, Abortion or Contraception’.  They state that it is clearly wrong for an individual doctor’s beliefs to restrict access to a service that the state has determined can benefit patients, and (through the principle of distributive justice) society as a whole. They go on to suggest that doctors who are not comfortable with such treatments should be restricted themselves, in the type of medical career they choose to pursue. Parallels are made with other interventions – ‘If you don’t believe contraception or sterilisation are part of the modern practice of medicine, don’t become a GP.’ Ethical relativism, whereby we are at liberty to apply personal values to controversial issues (such as AD), is heavily criticised. We must provide what is lawful, either personally, or by effective and timely onward referral. Savulescu can be seen summarising this view in an interview within this article.

More accommodating views have been aired. Roger Trigg, although clearly in favour of a doctor’s right to object, emphasises that a spectrum of opinion must be catered for in a reasonable, liberal world,

‘Physicians and others should not be coerced into involvement of any kind in what they regard as wrong. Such coercion goes against the very principles of liberal democracy. Conscience matters. Reasonable accommodation should be given to those whose moral judgment may be at variance with prevailing professional norms’

Peter Brindley, writing in the Canadian Journal of General Internal Medicine, also urges compromise, but insists that patient welfare must at all times be paramount,

‘We believe that it is appropriate to provide some ability to opt out. As such, it is appropriate that there be flexibility within both the MAID legislation and within regulations from provincial medical colleges. However, opting out cannot mean abandoning the patient. Conscientious objection is also not an acceptable excuse to avoid any medical interventions that are complex or time consuming or poorly recompensed, or legally perilous.’

For the practicing clinician, these highly charged arguments are useful, but also bewildering. What is right? There is no absolute right, obviously, but as employees of the state (assuming UK practitioners will be working in the NHS) we would need guidance. Although we are all capable of developing our own views based on the evidence that we read, we are accustomed to seek, and be steered by, consensus opinion. We refer to guidance for everything from the management of pulmonary embolism to referral thresholds for in-vitro fertilisation. Until NICE passes its judgment on a new treatment, there is often no obligation for Trusts to provide it all. AD would require the same rigorous assessment of evidence and cost, I presume.

This is all speculation, as AD is far from legal in the UK. Perhaps it will never happen. Despite being asked the question several times, the UK parliament seems settled in its opinion that things should stay as they are. The courts however, keep asking parliament to consider what is, to many, an unsatisfactory state of affairs. If things do change, if the incremental progress made by people like Noel Conway finally tips the balance, we might benefit from rehearsing some of the arguments that Canada has had to work through.

 

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Other blog posts on AD can be found here:

A pre-publication version of my article in Clinical Ethics, ‘From empathy to assisted dying: an argument’ can be read here.

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Keeping the options open

There are many reasons why hospital doctors can be slow to engage patients on the question of DNACPR. This is one of them.

A frail patient agrees that a DNACPR form should be put in her notes. Two weeks ago she was admitted with severe pneumonia, and survived a week in ICU on a ventilator. Although she beat the odds, it was made clear to the family that if her chest deteriorated again, she would not benefit from being taken back to ICU.

The DNACPR decision is made a few days after she arrives back on the general ward, once the receiving team have taken the measure of the situation. In the event of a cardiac arrest her pulse might well be regained several minutes into the ALS algorithm (many are, after the elephantine doses of adrenaline that are given), but she would be very unlikely survive to discharge. Indeed, based on the therapeutic ‘ceiling’ set on her discharge from ICU, the option of returning to those same life support machines that are required to bring someone out of a post-cardiac arrest situation has already been ruled out.

DNACPR is clearly appropriate. The form is written. Everyone agrees, including the patient.

Then she vomits up a bowlful of blood. It looks like it could be a stomach or duodenal ulcer. Her blood pressure drops, but improves with some rapidly infused fluid, then some packed red cells. But the blood keeps coming, and it is clear that she needs an endoscopy to confirm the diagnosis and, hopefully, treat it. She is too frail to be brought down to the endoscopy department; her breathing is shallow, her blood pressure is labile. She needs to be stabilised in ICU. A phone call is made. The ICU registrar attends the ward. She flicks through the notes,

“She’s clearly not an ICU candidate. It’s all over the notes.”

“That was written in case of a respiratory deterioration. This is different.”

“How?”

“It’s a bleed. It could be reversed. I accept that she shouldn’t receive multiple organ support, but she needs two or three days of close monitoring, perhaps a bit of vasopressor support* if her BP drops to keep the kidneys going. If the endoscopist can stop the bleeding she could be out of there in a day and back on the ward.”

“It rarely happens like that.”

“I’m not comfortable with the idea of her bleeding out here. Yes, she is frail, yes if she arrests, I accept it’s over. But there may well be a straightforward, treatable lesion there.”

The registrar withdraws to liase with her senior. He attends. He reads the notes, takes in the DNACPR form, heads in to look at the patient, and emerges from the curtained bay.

“I think we should honour the DNACPR… keep her comfortable…”

The medical consultant stares, trying hard to disguise his disgust.

“’Honour the DNACPR’! The DNACPR has nothing to do with her treatment in this situation. It is not a symbol designed to ensure instant palliative care. This is precisely why we don’t do DNACPRs when perhaps we should, because of this sort of….”

And he goes on, building up steam, accessing his frustration. In the end a compromise is reached… but the point has been made, and it is worth considering in more detail.

The question to consider here is – Do DNACPR forms materially influence a patient’s chances of being treated aggressively in the event of an emergency? On the face of it, they should not. The DNACPR is there to make it clear to whoever happens to be on the ward at the time, that the crash team should not be summoned. Death should be allowed to occur naturally. It says nothing about endoscopies, monitoring on the ICU, short term vasopressors… Moreover, every version of the DNACPR form I have seen emphasises that it is not irrevocable, it can be rescinded if circumstances change.

Yet, surely, there must be a close correlation between DNACPR status and ‘not for ICU’. The chances of surviving an ICU admission are driven by the same physiological parameters as those that determine survival after cardiac arrest. Looking at the figure below**, you can see how CPR sits at the apex of medical interventions, just above ICU.

 

Although I cannot find the studies to confirm this, in my experience, most if not all patients who are not for CPR are also not for ICU. The two go hand in hand. Therefore, by filling out a DNACPR for my patients, I am also making a statement, that he or she should not be considered for admission to ICU. But what if that is not the message I wish to convey? I can make an explanatory note; I can use a better ‘form’ (eg. ReSPECT, recently promoted in the BMJ, yet to be used nationwide). But I cannot overturn the impression that a DNACPR form makes on many colleagues, that the death of the patient should not come as a surprise, and that efforts to reverse an unexpected but life-threatening problem should not be strenuous.

‘Honour the DNACPR.’ I have heard that phrase. It is because those six initials carry so much weight, and may exclude the possibility of life-extending measures, that I, and others, are sometimes slow to start the conversations around resuscitation.

The larger point I take away from this scenario is that forms, even subtle ones like ReSPECT or other treatment escalation processes, are ill-suited to the multitude of ways in which patients can change suddenly. Although they come with the caveat that they should not be used as blanket statements, they can be read as headline summaries about how to approach patients. Different doctors will read them in different ways. To keep the options open, many doctors will choose to delay allowing those headlines to enter the notes.

 

* a powerful drug infused to keep up the blood pressure

** Taken from Dahill et al, Improving documentation of treatment escalation decisions in acute care  BMJ Qual Improv Report 2013;2

[Fictional scenario]

 

For more on the reasons why DNACPR decisions can be delayed, explore this booklet…

Batteries are low: the work of engaging in DNACPR discussions

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

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

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

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

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

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

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

“Ok. Where to next?”

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

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

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

We see some more patients.

Then we come to the third.

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

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

“Yes.”

“What if they deteriorate?”

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

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

 

 

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

 

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When death is not the end

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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The unknown quantity

What determines if and when patients ‘turn the corner’? I have never understood.

In my world of acute-on-chronic disease, where patients suffer sudden and life threatening reverses, there are numerous stories of unexpected turnarounds. Our efforts to prognosticate accurately have led to many scoring systems, all of which have been ‘validated’, but when applied to individual patients who surprise you with twists and turns, their relevance appears diminished. However bad the numbers, we treat, we support, we try to save… unless the presentation comes at the end of a long and well recognised decline, and we (the patient, the family, the team) are thoroughly ‘signed up’ to palliation. That circumstance remains a rare one, despite the increasing value we give to conversations about death.

So we are guided by experience – that fickle teacher.

Last year a very sick patient came in. He struggled, we struggled; he responded to intensive care support, we felt satisfied that our decision to advocate for aggressive treatment was the right one. He deteriorated, we isolated the infection. We talked the family through it, and suggested that not give up yet. He fluctuated, weakening a little with each reverse, until… weeks later, he died. All that hope. All that work. The ‘numbers’, at one stage, had looked better. But that is the nature of the disease. Unexpected complications. Hidden infections. Sudden ruptures.

The grim picture joined the file of failures that I, and all doctors, compile in their memories from day 1. It is called experience. But the way such memories absorb the light colours our view of the present. That is the whole point of experience, of course; to change the way we approach similar circumstances in the future.

The shapes and lines of that patient’s clinical course remained etched in my mind when, months later, I recognised an almost identical scenario. Her liver function looked the same during the first week. Her slide into an intensive care bed occurred over similar interval. I was ‘guarded’ in my prognosis, but I knew what was going to happen here. I knew. The road home presented too many traps and potholes for her body to negotiate, given the advanced nature of her disease. Any and each of them could kill her in a few hours. As time passed, her clinical course described the usual sinusoidal curve. The downslopes were not catastrophic enough to justify withdrawal, and the upward gradients were not sufficiently sustained to launch a bid for convalescence.

We reacted to each complication with urgency. Our policy was unchanged – treat, support, save. But my heart was not really in it. I did not have hope. I know I communicated that to trainees. Those muttered opinions as we walked out of intensive care. But at no point did we hesitate or withhold. And time passed.

Until… she returned to the ward. She turned the corner. She had climbed far enough up the hill for the swirling, sucking mists of death to no longer have a hold on her. Then she went home.

A trainee asked, “You know _____? I thought you said the chances of her surviving were…” I stopped her there, and turned the case into a occasion to teach on the subject of uncertainty. 

Is it a ‘survival gene’? Poor science. Then what? We do not know. Probably, luck is involved. When such large unknowns are involved, when the rules that underlie our attempted predictions appear unfixed, pattern recognition can lead to erroneous conclusions. Sometimes it’s better just to treat, support, stand back, and try not to outthink the disease… hoping that they turn the corner.

 

See also, Patterns and pride: diary of a medical anecdote

 

 

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When atheist doctors meet God’s will

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.

 

***

New collection, Vol IV – click image to see on Amazon

The gentle fiction

‘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)

 

***

Collected posts, Vol IV – click on image to view in Amazon

Curators of compassion

Mechanical 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.

 

 

New collection, Volume IV, click to explore on Amazon

So superior… – making judgements on medical care

 

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.

 

New collection – click image to explore on Amazon

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.

 

4th collection of posts, click image to explore