Singular histories, common needs: replacing the LCP

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 Since the LCP was withdrawn, its commendable intentions besmirched by association with CQUIN payments and isolated poor practice, patients have continued to die.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

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

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

Not missed

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conclusion  – effective protocols make work* for those who follow them, and when any protocol or treatment pathway is withdrawn, other business rapidly fills the space.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 I have no evidence that care for the dying has suffered since the LCP was withdrawn, but know that I, personally, am spending less time on the little things.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

The semantics of protocols and pathways

What was the LCP? According to Neuberger,

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

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

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

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

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

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

The problem of inexorability

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

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

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

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

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

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

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

Finding the singular in the ubiquitous

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

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

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

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

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

The onward flow

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

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

or,

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

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

oOo

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

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

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

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

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

[page 17]

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

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

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

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

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

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

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

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

 

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

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

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

 

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

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

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

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

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

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

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Derailed: how the LCP controversy has changed family discussions

The Liverpool Care Pathway (LCP) debate has brought the public’s attention to the possibility that patients are being deprived of life, their death hastened, when medical teams decide that their time has come. The elements of the pathway that were intended to reduce the burden of treatment, such as not inserting new intravenous lines or passing feeding tubes, have been portrayed as withdrawals of care.

The end result, at one level, has been helpful. Doctors and nurses are now more careful and explicit in describing what the pathway entails and what its effects might be. It is undeniable that in some cases, the LCP was started without families being aware of it. Most in the medical profession feel stongly that the LCP does not itself bring about death, but it has become necessary to consider this possibilty when discussing it with relatives. But I now wonder whether this need for clarity has altered the tone of end of life care discussions adversely.

To put it simply, there is a danger that we end up discussing the philosophy and application of LCP itself more than the needs of the individual patient.

This may be because we are nervous. I can only speak for myself of course, but I have found myself introducing the term ‘Liverpool Care Pathway’ with a degree of hesitancy, because I know it may have baggage attached. I do not know how the relatives that face me will interpret those words, because I do not know how they have reacted to the media coverage. Will they assume that I am trying to enforce some form of euthanasia? Will they read into my words some malign motivation, the need to clear a bed, to unburden the Trust of their ailing loved one? Or will they have listened to the debates and read the articles without developing scepticism towards doctors? It is necessary to gauge the family’s reaction before moving on to the next part of the discussion. And this carries with it the danger of the derailing the whole interaction. There is a danger that focus on the patients needs and previously expressed goals is lost, while the conversation segues into a cursory review of recent news stories and media reports.

You have no idea what the reaction will be until you mention it, but because the LCP is now ‘controversial’, you have to make emotional room and physical time to manage it. The tone is altered. If there is scepticism or fear (and who could blame a Daily Mail or Telegraph reader for having doubts after the numerous reports?) it remains for the doctors or nurses to overcome this, to gently persuade and reassure. Their skills and knowledge are diverted into justifyng a mode of care that they continue to have faith in, rather than concentrating on the individual aspects of the patient’s treatment.

One option would be to carry on regardless, to have the same discussion that one would have had before the controversy took fire. But that approach risks ignoring any concerns that the family might have but are too shocked or nervous to voice. There is a danger that a day or two later the import of the Pathway’s initiation will sink in and the situation could be challenged. The bottom line is that permission is needed to start the pathway. Indeed, Jeremy Hunt (Secretary of State for Health) has suggested that it may become a legal requirement. This contrasts with resuscitation, which remains a ‘medical’ decision*.

So, what to most doctors and nurses was merely a way of organising and formalising established methods of terminal care has now become a ‘treatment’ in itself, one that demands a separate exploration of risks and benefits. I would question whether this is the right kind of conversation to be having with the family of the patient who is clearly dying. Is it really appropriate to introduce new ideas and new decisions at this moment? The medical journey has almost reached an end. The burdens and benefits of various therapies (chemotherapy, antibiotics, surgery, ventilators…) will have been discussed at length, but they will not have proved successful, and that is why the patient is now dying. As the patient moves into their final few days, the relatives are presented with yet another decision…one which, most believe, is not a true decision at all.

Critics of the LCP argue that doctors are not good at predicting death. This forms the foundation of Professor Pullicino’s case against the Pathway. To a family member who has taken an interest in the controversy one of the first questions they might ask is, ‘How can you be sure they are dying? I’ve read that it’s a completely inexact science…’ To the doctor or nurse who is trying to talk through end of life care options, this is hugely undermining. How can they introduce the concept of the LCP, designed to alleviate discomfort at the end of life, while simultaneously fielding doubts that are raised about the diagnosis of dying? The honest answer would be, ‘We can never be a hundred percent certain sure…’, while the unvoiced thought runs through their mind – ‘I’ve seen hundreds of patients die, and I can tell you with a great deal of certainty, your mother is dying…’

Medical professionals can deal with all of this. Part of our role is to explain what is happening to families. We don’t mind…but I do find it regretful that the very term LCP has become a potential stumbling block in a journey that should be smooth. Doctors, nurses and families should not have to be skirting around the issue of ‘that death pathway they’re always talking about…’ when the minds of all involved should be focused on the needs of one person – the patient.

Note: this article is written with an emphasis on non-capacitous patients, rather than those who are able to engage in a full discussion before the terminal phase of their illness.

*best practice always involves explaining the resuscitation decision, and ideally obtaining agreement from the family. This occurs in the vast majority of circumstances.

“Challenge everything”: A junior doctor questions the LCP

When a new junior trainee attended for his first clinical supervisor meeting I asked him to challenge what he saw on the ward, and not to be afraid to slow down the pace of things if he felt that his patients’ needs were not being met. A week later he stopped the ward round to ask me why an improving patient was still on the Liverpool Care Pathway (LCP). In the ensuing discussion we pulled the LCP apart and put the pieces under a microscope.

The patient was 89 and had advanced dementia. She had been living in a residential home, requiring assitance with most daily activities, and was admitted following a fall with signs of a chest infection. There were also features of significant malnutrition. The home reported that she had been eating less and less there. Despite treatment with antibiotics and fluids for 5 days she deteriorated and stopped eating completely. When she tried to drink, liquid tended to tip into her windpipe and cause her to have further breathing problems. She could not cooperate with physiotherapists and the nurses stopped helping her into the bedside chair. She could no longer communicate, but appeared uncomfortable if she was not in bed. She just lay there. On one occaasion ger temperature was found to be 34.8 degrees C (markedly low), even though the infection had been treated. I decided that her dementia had progressed, and that she was now dying.

We discussed the LCP with her son and discovered that he knew all about it. He agreed that the time had come to concentrate on comfort. The paperwork was completed. Two days later, on the next consultant ward round, we found her sitting up, relatively alert, and able to tell us that she was hungry and thirsty. I thought carefully about whether to take her off the LCP but decided that she should remain on it, with daily review.  The speech and language therapist was still concerned that should she drink there was a risk her lungs would be contaminated, but I asked the nurses to give her thickened fluids if she asked for them. The house officer wrote in the LCP booklet, looked at me quizzically, and asked –  

 

Why is she still on the LCP?

That is a very good question. It’s not uncommon for patients to appear to rally after a few days, on no treatment, and it’s a real challenge to know how to respond.

She seems to have improved. Shouldn’t we treat actively again?

We have to ask ourselves – does this improvement represent a genuine reversal in her medical condition?

But she has improved.

She has rallied yes, but has her underlying condition actually reversed?

Well, she was moribund, but now she is talking.

But look at the amount she’s eating and drinking. Close to zero. Not enough to sustain life. So, really, she is at the place she was a few days ago just before she became completely unresponsive.

But isn’t there a chance of further improvement?

We can’t expect her to become better than she was after her infection was treated. At the moment she is alert but she cannot eat or drink enough to sustain life. So we have two ask ourselves what we would achieve for her by escalating her care again. If we put a drip back up to give her enough fluid to survive, what are we expecting her to do?

Couldn’t we could try to get her back to the home, after a few days of building her up?

But we know that whatever we do she is unlikely to ever be able to eat or drink enough to survive in the medium term. It is her dementia that is doing that, and her dementia is truly irreversible. Should we feed her artificially? Well, if we give her extra fluid now, or a nasogastric feeding tube, we will sustain her life for as long as we choose to continue those treatments. But at some point we are going to have to withdraw those treatments.

Why?

Because it is not possible to send a patient with such severe dementia home on an intravenous drip or with a feeding tube in place. A drip means you have to be in hospital. A feeding tube is positively dangerous if you are confused and don’t understand why you have it…which she wouldn’t.

What about a PEG tube? [a feeding tube inserted directly into the stomach]

That is a good question, but we know from large studies that even inserting a PEG tube and guaranteeing sufficient food intake does not extend life or stop things like bedsores or infections. It seems counterintuitive but it is true.

But I don’t understand how we can ignore her improvement.

I know it’s difficult. But I feel that even though she appears to have improved her prognosis has not changed. She truly has end stage dementia and although the signs of dying that we saw a few days ago do not seem to have evolved, the situation is essentially unchanged. She is still a lady with advanced dementia who cannot take enough sustenance to survive.

So you think she is still dying, even though she…has improved?

I do, although perhaps not in the time frame that we anticipated. But if we now reverse our decision, put a cannula in, or a feeding tube, we will undoubtedly lengthen her life, but we will not change anything fundamentally. So now we have two make sure that her family are prepared for it, and do not challenge our perception that she is truly at the end of her life.

So while we do that shouldn’t we take her off the pathway – shouldn’t we make the assumption that life should be preserved? Isn’t that our primary role?

I did think about that…about taking her off it while we discussed with the family. But is it right to chop and change if this improvement is really only a temporary thing?  We must have the courage of our convictions when it comes to the diagnosis that we have made. You are responding to the evidence that she is now more alert, and assuming that this represents a genuine improvement in her medical condition. I on the other hand still feel that she is in the terminal stage of her dementia. Now you could accuse me of forcing fate by continuing to withhold hydration or food because in that way her ultimate death is almost guaranteed. I understand that point of view. It is an accusation commonly levelled at doctors who use the LCP. I would counter that by saying that if we now reverse our policy, we will be able to keep her alive in the short term, but it will be an artificial situation. It will be entirely dependent on the fluids (or tube feed) that we are giving. But then, at some point, we need to think about the next step. Staying in hospital forever is not an option. So be it her home or a nursing home, she will not be able to take in enough food or drink. As soon as she leaves here she will become dehydrated, and will begin to die again. So the life that we maintain here with our invasive treatments is not a fair reflection of her ability to survive. And it cannot go on forever.

So it’s up to us to decide when she can die?

Perhaps. It is up to us to recognise when her dementia has advanced so far that it is incompatible with survival. It is our job, before that, to ensure that there is nothing more acute going on – like an infection – which can be reversed.  And once we have ruled out or treated reversible causes we need to be honest with ourselves, with the family, and with the patient –  if they are  able to understand us.  We need to be clear that she has entered a terminal phase. Is it not better to accept that and discuss it openly and make arrangements for a comfortable death, or for some time at home with community palliative care, rather than maintain her life artificially and hold out for some more fundamental improvement that we know will not take place.

But sometimes we are wrong.

We were wrong here. I thought she was going to die in the next day or two, and here she is engaging and talking. But I don’t think I was wrong about recognising her still very poor short term prognosis.

And what if the family have the same reaction that I did and think that she should come off the pathway?

Then we have some explaining to do and some careful judgements to make. But at some point we have to test her ability to survive on her own, and it will then become clear. There are some other options. We should get a member of the palliative care team to give another opinion. And we should consider the option of discharging her off the LCP, and asking her GP to consider end of life care in the community if she deteriorates as we think she will. We review her tomorrow and if she has improved even more then of course, we will change tack. Are you happy? Do you agree?

I…

You’re uncomfortable. That’s good. If you become too comfortable around death you stop asking questions of yourself. I did ask you to challenge everything…you were right to.

 [identifying details have been changed]

Deeper water: religion, end of life care and the case for public disclosure.

We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.

 

What patients believe is clearly important. The plight of Mr L, a Muslim man with hypoxic brain injury whom doctors did not wish to resuscitate in the event of deterioration, was brought before the Court of Protection in October 2012 by his family. They insisted that, based on his previous respect for Islamic law, he would have wanted every treatment possible that might extend his life. The judge found in favour of the medical team, Mr Justice Moylan saying,

                “It [resuscitation or aggressive organ support] would result in death being characterised by a series of harmful interventions without any realistic prospect of such treatment producing any benefit.”

 

Julian Savulescu (Uehiro Chair in Practical Ethics, University of Oxford), an atheist, has written starkly on the issue of unusual or futile treatment being offered in response to patients’ religious preferences:

                ‘Religion and ethics are different categories of human enquiriy. Religion is as different from ethics as it is from mathematics. Religion is about faith; ethics is about reason. For ethics, religious values are just another set of values, to be treated in the same way as other relevantly similar values. Religion is about what biblical texts, traditions and figureheads say is right and wrong, and what some theists believe is right and wrong. Ethics is about what is right and wrong, about what we have reason to do, what we should do.’

However, my intention in this article is not to explore the infinite variety of belief that informs patient preference. We cannot reasonably expect patients to behave uniformly in matters spiritual, and questions of autonomy should not be invalidated by a religious background. Conversely, there is a school of thought that within a single health service patients should be able to expect consistency from their doctors when it comes to end of life care.

 

The questions that I would like to explore are:

i) Do doctors vary in their practise according to religiosity?

ii) Is such variety acceptable?

iii) If not, should doctors have to disclose their beliefs to patients? This question will lead me to ask, finall

iv) Should doctors disclose their beliefs in public debate on end of life issues?

 

Do doctors vary in their practise according to religiosity?

Clive Seale, now Professor of Sociology at Brunel University, conducted a survey of nearly 4000 doctors who care for dying patients. Having ascertained the type and strength of religious belief, he asked four questions, about the use deep sedation prior to death, attitudes to legalisation of assisted dying, the stated intent to hasten death, and willingness to discuss such decisions with patients. 13.4% described themselves as ‘extremely’ and ‘very’ religious, while 20.7% were ‘extremely’ and ‘very’ un-religious (with a bell curve type distribution in between).

 

Deep sedation was provided by 16.4% of very or extremely religious doctors compared to 22.7 of the strongly non-religious (p=0.03). Differences in intent (32.3 vs 50%), attitude to AD ( anti – 15.5 vs pro – 51.1%) and discussion (64.1 vs 87.9%, p<0.0005 for all) were more emphatic. The headline result, reported in the media, was that non-religious doctors were ‘40% more likely to sedate than religious doctors’ (BBC, Today programme audio excerpt).

The fact that religious doctors appeared less inclined to ‘discuss end-of-life treatment option with their patients’ was also highlighted, leading to conjecture that these individuals were perhaps complacent in their beliefs. A correspondent to the Journal of Medical Ethics, a practising Catholic, provided an intriguing explanation for this rather worrying observation:

                “Perhaps the religious doctors only felt compelled to do so in cases when they felt  the patient’s suffering was particularly intolerable, whereas the threshold may have been slightly lower for non-religious doctors who have a more favourable opinion of treatment options that may shorten life. Thus, in the context of such extreme and apparently intolerable suffering, the doctors providing potentially life-shortening treatment may have felt that it was inappropriate (and even unethical) to delay     treatment in order to engage in a discussion about this treatment option with their patients.”

 

A tendency to shy away from full discussion of treatment options at the end of life was also found by Curlin et al, in a 2007 NEJM paper;

                ‘Physicians who were male, those who were religious, and those who had personal objections to morally controversial clinical practices were less likely to report that doctors must disclose information about or refer patients for medical procedures to which the physician objected on moral grounds (multivariate odds ratios, 0.3 to 0.5).’

The Seale paper was not an isolated event. The Ethicatt study, published by Bulow et al this year, analysed responses by Protestant, Catholic and Jewish medical professionals in 142 intensive care units. It found that,

                ‘religious respondents wanted more treatment and were more in favor of life prolongation, and they were less likely to want active euthanasia than those affiliated’

(‘affiliated’ being nominal members of those religions, but without strong faith). A systematic review of the literature on this question (Mcormack et al, Palliative Medicine 2012) found that,

                ‘degree of religiosity appeared as a statistically significant factor in influencing doctors’ attitudes.’

 

Is this variability acceptable?

Following the press release and subsequent media coverage, a BMA spokesperson said,

                ‘The religious beliefs of doctors should not be allowed influence objective, patient-centred decision-making…’

Was this a criticism of the state of affairs that Seale had revealed? If we assume that the spectrum of patient preference was equally distributed across the variously religious subsets of doctors who responded to the questionnaire, we must conclude that decisions were not being made on purely objective grounds. The preferences (if elicited), and the decisions that were made, were clearly modulated by the beliefs of the doctors.

 

Julian Savulescu wrote the following response to the question ‘Should doctors feel able to practise according to their personal values and beliefs?’,

                ‘Objection by doctors, as is commonly practised, is discriminatory medicine. Only a fully justified and publicly accepted set of objective values results in ethical medicine as a proper public service with agreed and justified moral and legal standard to which doctors should be held.’

 

I have sympathy with this view, but think it is unobtainable, and possibly naïve. ‘Is it right?’ is probably the wrong question to ask. Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised. Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation. That is why my third question, should doctors disclose their beliefs to patients more readily, may have greater relevance.

 

It is not wise to make blatantly religious statements to patients, nor to frame medical advice with religious references. The GMC recently found against a GP, Richard Scott, who, as reported in the Telegraph,

                ‘told the patient he was not going to offer him any medical help, tests or advice and stated if he did not “turn towards Jesus then he would suffer for the rest of his life”.’

The GMC was accused on ‘militant secularism’ by Dr Peter Saunders of the Christian Medical Foundation. A case such as this takes us into rather extreme territory, and dwelling on it will polarise the discussion. Suffice to say, declaring ones religion in the wrong context is foolhardy. But should we expect doctors caring for patients at the end of their lives to mention, early on, that they have faith? To the individual patient such information would only be useful if that faith was definitely allied to a reluctance to prescribe deep sedation, or to take decisions with the intent of shortening life, or to enter into frank discussion. Would a religious doctor really accept that characterisation, or admit to such discinclination? I doubt it. That is the difficulty with large studies – it is almost impossible to know how they apply to the individual! So in answer to my third question I would to say no, it is unrealistic and unfair such face-to-face disclosure.

 

In the public arena however, my conclusion is very different.

 

Should doctors disclose their beliefs in public debate on end of life issues?

The Clive Seale paper is over two years old now, but I think it’s findings, and those of related studies, deserve to be revisited in light of recent debate on the Liverpool Care Pathway (LCP), and in anticipation of Lord Falconer’s upcoming Assisted Dying. Many people, from all walks of life, have been airing strong opinions. In these debates ‘religiosity’ is clearly relevant. Yet, while it is not routine for proponents or opponents to disclose their beliefs when engaging in argument, those who listen to their points will have little insight into the deep seated spiritual leanings that colour their statements. Seale concluded his paper with the comments, ‘Greater acknowledgement of the relationship of doctors’ values with clinical decision making is advocated’. Acknowledgement – that is the word.

 

The recent LCP controversy was sparked by a presentation from Professor Patrick Pullicino, a member of the Medical Ethics Alliance, and was followed by a statement co-signed by a number of religious representatives. These included: Chairman of the Catholic Union of Great Britain, Chairman of the Joint Medico Ethical Committee Catholic Union, President of the Catholic Medical Association, a member of the Catholic Nurses Association, and the Founding Chairman of the Health and Medical Committee, Muslim Council of Britain. Yet these affiliations were not revealed, at least to the casual reader, from the outset.

 

It was only by looking beyond the newspaper reports that one was able to discover that the MEA is essentially an alliance of religious groups. This realisation led me to wonder if their arguments, which at first sight appeared to be based solely on matters of prognostic accuracy and patient safety (very reasonable concerns) were in fact informed by deep seated religious principles – such as ‘sanctity of life’. The perception that life is God’s gift may well conflict with a guideline that instruct the doctor to prescribe sedation which may, unintentionally, shorten a patient’s life. I do not know this, because I do not believe in God, but it must be allowable to make conjectures linking the variations in behaviour revealed by Clive Seale with their possible psychological underpinnings.

 

If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy. For if policy is changed (or, more likely in the case of assisted dying, arrested in its evolution), those of us who do not believe in a God deserve to know how the care that we receive towards the end of our earth-bound lives has been shaped by religious belief. It should not be hidden from view, or made visible only to those who search beyond the surface.

 

Atheists must accept that religion is an integral part of life in the United Kingdom. We cannot disregard the historical events that led to the creation of the Church of England and its intimate relation to the state. Atheists must recognise too that much good in modern medicine derives from religion. Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity. Her obituary (Guardian, 2005) reads,

                ‘Religion always played a part at St Christopher’s [the hospice she created], though it was never forced on patients or staff: neither were necessarily Christian. The object was always as much secular as religious: to convince patients and their relatives and friends that they were not alone; that, despite their terminal condition, they still had value as human beings…’

 

As a result of the palliative care movement, and the way its associated philosophy has spread into the practise of general medicine, the UK’s reputation for the care of dying patients is unsupassed. The Economist Intelligence Unit found that the UK topped a worldwide ‘good death guide’ in 2010. Points were awarded for life expectancy, hospice availabilty and access to pain killers.

 

I am far more comfortable criticising religion than I am the religious. Who wouldn’t be? All atheists number people with faith among their family, friends and colleagues. In this blog I have tried not to criticise, but to present evidence that belief alters behaviour, informs opinions, and shapes public debate. Debate in turn informs policy, and if those religious individuals and groups who take the initiative in the public arena are to maintain the trust of those who read and reflect on their views, I believe they should disclose their beliefs up-front, and not wait to be asked or discovered.

 

Notes:

References – I have embedded links to relevant references rather than produce a list here

Disclosure: I am an atheist

 

Back to the source: a response to Patrick Pullicino’s Liverpool Care Pathway paper

Why do this?

This paper, published by Professor Patrick Pullicino in the Catholic Medical Quaterly (Volume 62(4) November 2012, online journal), represents the intellectual foundation on which the current, frequently destructive debate about the LCP is based. The research into prediction, prognostication, treatment withdrawal and misapplication formed the basis of a lecture at the Royal Society of Medicine in July 2012. This meeting was convened by the Medical Ethics Alliance.

As a general physician, gastroenterologist and hepatologist I have been and always will be involved in the care of dying patients. Although I am not a palliative care specialist, and although I do not have detailed knowledge of the evidence for or against the LCP, I do feel that I am qualified to make this response. For I am one of thousands of doctors who have been accused, implicitly, of practising euthanasia.

I have not attempted to submit this critique to the Catholic Medical Quarterly as correspondence.

In this article I summarise each of the paper’s section in turn and then present my own criticisms in italics. I have deliberately avoided trying to mount a full scale defence or overall justification for the LCP, choosing to limit myself to the points raised in Pullcino’s paper. Excellent articles extolling the LCP have been published elsewhere. It may be helpful to open the original paper in a separate window while reading this.

Introduction No comments.

Prediction and Prognostication The difference between these two terms is discussed. Prediction represents an individual clinician’s ‘educated guess’ of a patient’s expected survival, whereas prognostication is based on objective data and statistical modelling. It is emphasised that data does not exist to allow accurate prognostication in the ‘short term’, ie. the ‘final hours and days’ for which the LCP is designed.

Seeking to highlight prognostic scores that address patients with very short term survival prospects, he describes the Palliative Prognostic Score. This study split patients into three groups according to their estimated survival, median duration being 76, 32 and 14 days. 30 day survival probability for the latter group was 17%. He then mentions a nomogram (by Felieu J et al, 2011) which gives a 15 day survival probability, but points out that it was inaccurate a third of the time. ‘In this study, in a quartile (99 patients) of mean survival 10 days, over 10% survived much longer, with survival up to 200 days.’

These important observation force those of us who use the LCP to examine our thought processes. Are our prognostic/predictive skills really as bad as the literature would suggest? I know of no-one who uses prognostic scores and objective criteria on the ward. The diagnosis of ‘dying’ is indeed a subjective exercise, its accuracy increasing as patients display more and more typical clinical features. On further reflection however I concluded that the studies described are not particularly relevant to clinicians treating patients at the very end of their lives. What we are required to is recognise dying and manage it, not predict that dying will occur a week, two weeks or two months in the future. The question we must ask ourselves is ‘do we diagnose dying accurately?’, not ‘are we good at determining how long this currently stable patient will survive with this illness?’

Literature search The author states that no sources could be found to describe the use of prognostic scores within a ‘very early time frame’

No comments

Clinical factors associated with withdrawal of care This brief review concentrates on a study of organ support withdrawal in 15 intensive care units. It was found that subjective factors related to physicians’ perception of survival probability, potential cognitive deficit and substituted judgment of the patients’ view on resuscitation, but not age, prior functional status, illness severity or organ dysfunction were independently associated with the decision to withdraw. An accompanying editorial explored this phenomenon, raising concerns that physicians were ‘creating a self fulfilling prophecy’; ie. deciding that death was inevitable and facilitating it’s evolution.

The author then describes a study of patients with neurosurgical emergencies, reporting that survival was improved with aggressive surgical management and intensive care support. He concludes the section with ‘Practitioners tend to be overly pessimistic in prognosticating outcome based upon data available at the time of presentation.’

Although a discussion about the power of physicians’ opinions in end of life scenarios is valuable, and the danger of the ‘self fulfilling prophecy’ is of particular interest, I did not feel that studies of ICU patients were relevant to the LCP. The vast majority of patients put on the LCP do not have organ support withdrawn.

Care of a patient put on LCP A patient was admitted under the author’s care and put on the LCP by a trainee in the context of apparently intractable seizures. Next day the author determined that the relatives were not in agreement with it. LCP was withdrawn. The patient was discharged and survived for three months at home with maximal support for activities of daily living.

The error here appears to have been a lack of communication. The LCP was not applied correctly, and the author’s subsequent cancellation of it is not therefore surprising. The fact that the patient survived also demonstrates that the prediction, or prognostication, was inaccurate. My take on this case was that ‘intractable seizures’ is an unusual circumstance for the use of LCP, and the ‘diagnosis of dying’ all the more difficult. It is not surprising that the author was motivated to investigate the LCP following this experience. I wondered if the author’s experience of LCP in a non-medical specialty had led to a skewed view of its benefits and risks.

Conclusions The author states that there is no scientific evidence ‘to support a diagnosis that the patient is in the last hours or days of life.’ He then moves on to state that without an evidence base use of the LCP equates to an Assisted Death pathway. He highlights the very subjective decision making process, and recalls the problem of the self fulfilling prophecy.

The author then makes this hugely controversial statement: ‘If we accept to use the LCP we accept that euthanasia is part of the standard way of dying in the NHS. The LCP is now associated with nearly a third of NHS deaths. Very likely many elderly patients who could live substantially longer are being killed by the LCP including patients with “terminal” cancer, as the above research shows. Factors like pressure of beds and difficulty with nursing confused or difficult-to-manage elderly patients cannot be excluded as biases towards initiating the LCP.’

The full import of this statement is explored below, but even if the accusation of euthanasia is overlooked, it must be emphasised that no evidence has been provided to support an overall rise in mortality since the LCP was introduced.

Other statements include:

‘Starting a patient on the LCP, is an abandonment of evidence-based medicine in a critically-ill section of the hospital population’

Patients reaching the natural end of their lives are not critically ill.

‘Nursing of elderly patients who are on the LCP in proximity to those in whom evidence-based medicine is determining care, is confusing to junior medical staff and nurses alike’

Although deserving of attention, there is no evidence for this.

‘Use of the LCP is likely to have negative effects on elderly patients in particular, who are not on the LCP and to undermine the doctor-patient relationship’

This has certainly come to pass: trust between patients and doctors has been eroded during the LCP debate.

General critique

Defining prognosis and prediction is useful, although the difference between the two may seem rather semantic to many. As I have mentioned already, I am not sure that an analysis of our skill at prognostication is relevent to how we use LCP, the use of which is triggered by signs of possible dying. Nevertheless, if the LCP is perceived to guarantee death, it is very important that we identify dying patients accurately. Is this an achievable aim? Probably not. Should this admission result in abandonment of the LCP? Probably not. No methods of medical assessment, and no therapies, are 100% accurate or successful. As long as patients are reviewed regularly, to ensure comfort and to confirm the impression that the they are in fact dying, we should be able to minimise the risk of erroneous diagnosis while ensuring that the vast majority of patients benefit in terms of comfort.

It is the lack of evidence supporting the exercise of prognostication that drives this paper. The evidence that does exist in support of the benefit that patients derive from the LCP is not discussed. I think recognition that some evidence exists supporting the LCP would have added balance to this paper (for instance this ‘cluster trial’ – courtesy of Katherine Sleeman, Clinical Lecturer in palliative care, KCL, Cicely Saunders Institute).

Another area deserving discussion is that of communication. Prof Pullcino’s paper touches on this only briefly, during his description of the man with siezures, and I wonder if a greater focus on family conversations would have increased its relevance in this regard.

My overriding objection to this paper centres on the use of the word euthanasia. It is suggested that widespread use of the LCP equates to institutionalised euthanasia, and implicit in this is an accusation that individual practitioners have killed their patients. To read this, as a doctor who has used the LCP, is very difficult. The accusation is made in the conclusion without any supporting evidence. The ‘evidence’ that is reviewed in the paper does not touch upon intentional killing. If we are regularly making inaccurate predictions (or prognoses), that is of course unacceptable and must be addressed, but the term euthanasia suggests that we are intentionally killing our patients. There is absolutely no evidence for this.

This paper, and the thoughts behind it, sparked a huge controversy over end of life care in this country. I think it is methodologically weak and structurally flawed. I think it contains baseless conclusions, and is excessively liberal with emotive, hurtful accusations of intentional killing.

Acknowledgment: Dr Rita Pal alerted me to the paper’s online publication and has been helpful in researching details on the original RSM presentation.

 

Missed opportunities: the diagnosis of dying and the risks of delay

Controversy over the Liverpool Care Pathway (LCP) has crystallised the issues of prognostic accuracy, futility and treatment burden at the end of life.

The Telegraph, on the 29th October 2012, summarised current areas of concern, which included:

–  that it is impossible for medical staff to predict when death is imminent – so the decision to start the LCP is at best guesswork and at worst a form of euthanasia imposed without consent

 –  that by removing all drips, especially fluids, the diagnosis of death becomes self-fulfilling

It is suggested that premature introduction of the LCP, before all therapeutic avenues have been explored or given sufficient time to work, leads to avoidable deaths. Some say the LCP should only be introduced once a fatal outcome has become absolutely certain. Moreover, because there is no infallible way of diagnosing impending death, it might be safer not to use it at all, but to let death arrive in its own manner while we continue to treat actively in the hope of achieving a cure. In that way palliation – the cessation of antibiotics or other futile therapies, the withdrawal of artificially administered fluids and food, and the use of sedating or painkilling drugs, cannot be said to have eradicated the chance, however small, of survival.

 

Diagnosing Death

The diagnosis of dying is certainly unscientific. Estimating the duration of its approach, coping with its capricious tendency to retreat and re-group before a final advance, talking the patient or their relatives through this period, are huge challenges. There are some generally accepted signs of impending death, and critics of the LCP would have us wait for these to develop before converting to a palliative paradigm. Such signs include labile pulse rate and blood pressure, hypothermia and poor temperature regulation, sweating, pallor, cyanosis, irregular breathing patterns, audible airway secretions and confusion. These are the signs of dying, certainly, but I would suggest that they are not a useful guide. By the time they develop we may have missed the chance of providing comfort and avoiding harm.  

The challenge we face is not in recognising death as it happens, but in knowing at an early stage whom death has marked out. It is these patients who are at risk of receiving prolonged and aggressive treatment that will prove ultimately futile. The suffering that elderly patients experience as a result of their treatment is the ‘burden’ that doctors have become so concerned about. Significant pain, inadvertant injury, or even low level ‘run of the mill’ discomfort and indignity are difficult to justify if the end result is certain death.

It is this ‘pre-pre-terminal’ phase that demands our attention. We cannot afford to make mistakes in its identification, for the stakes (avoidable death) are too high. Patients who were put on the LCP before the signs of dying had become manifest, only to improve and survive, those who ‘defied’ their doctors, proved to sceptics that the LCP may be a lethal tool. These cases (link to examples 1 2 3) helped ignite the current furore. Because no doctor is always right, it is quite possible that nervous clinicians will now delay the LCP until the signs of death are irrefutable, unwilling to rely on their clinical experience. The result may well be more treatment, for longer. The overall burden of futile treatment may rise.

Withdrawing active treatment vs failure to escalate

Critics of the LCP are uneasy that active treatment can be withdrawn before the signs of dying have revealed themselves. Honesty is needed here. In many cases a decision will already have been made not to ‘escalate’ treatment even if improvement does not occur with first line therapies. An example would be limiting therapy for pneumonia in a very elderly patient to antibiotics and oxygen via a face mask but not transferring them to intensive care for mechanical ventilation; or attempting to kick start failed kidneys in a 90 year old with fluids, but not offering the life-saving option of dialysis. If basic therapies prove ineffective and it is decided to convert to a palliative approach, the withdrawal of those failed first line treatments (eg. antibiotics and fluids) is no worse, in my view, than not escalating. So, while criticising the removal of an IV cannula or nasogastric feeding tube (visible actions, commissions), it must be borne in mind that more effective interventions may well have been withheld (invisible omissions). The essential point is that treatment has failed and its continuation will make no difference to the chance of survival. Only measures that increase or preserve comfort can be justified.

 
Could this failure of escalation be a conspiracy to under-treat? One might portray it that way. But if we did not set such limits every single patient would pass through intensive care before being allowed to die. They do not, because we have made a calculation, that the burden of such super-aggressive therapy is disproportionate to the chance of success. There is no generally accepted metric, no reproducible equation with which to benchmark these decisions. Each calculation is made using unique data – medical history, comorbidities, functional ‘reserve’…and of course what is known or can be ascertained about the patient’s preferences. At the end of the day it comes down to medical experience, lessons learnt from seeing hundreds of patients go through similar experiences. 

 

We must be honest too, in admitting that there are questions of resource to be taken into account here. A society that makes almost infinite demands on its health service must agree where to draw the line…and offering hi-tech, complex and prolonged organ support to those with multiple co-morbidities, or those who are near the end of their natural life, is one of them.

Saving lives – our primary aim

The LCP debate has unfortunately focused the public’s attention on many negative aspects of medical care: treatment failure, futility, decisions on who not to treat, treatment withdrawal. It should be emphasised that doctors devote more of their time to treating than not treating, and are always looking for opportunities to save life. We are optimists, and are more likely to over-treat than under-treat, with a tendency to increase the burden of treatment in the hope that a patient will gradually show signs of improvement than make a hasty decision to withdraw. But we cannot escape the fact that with an ageing, comorbid population we will do a disservice to many patients if we treat indiscriminately. It is a poor doctor who sees only the disease and not the whole patient, who uses every therapy, technology and resource even as patients continue to deteriorate, and who ‘flogs’ a failing, weakening body with no thought for the pain or discomfort that is being endured.

An assault on trust: in defence of the patient-physician relationship at the end of life

The recent controversy about misuse of the Liverpool Care Pathway (LCP), arising from Professor Patrick Pullicino and channelled via the Daily Mail, has resulted in a sustained attack on the bond of trust between doctor and patient. It has been suggested that the LCP is commonly used to bring forward the death of patients for the purpose of vacating much-needed beds. The implicit suggestion is that very real economic and logistic problems faced by the NHS are influencing the therapeutic decisions being made by individual doctors. Critics of the LCP have been very emphatic and clear in their suspicions. Here are some quotes from Melanie Phillips in the Daily Mail:

 

In practice, however, the LCP has turned into something quite different. For while in some cases it has been used properly as intended, with numerous others it has become, instead, a backdoor form of euthanasia.

 

Horrifyingly, the LCP has become a self-fulfilling prophecy. When people are put on it, they are said to be dying. But they may not be dying at all — not, that is, until they are put on the ‘pathway’, whereupon they really do die as a result.

 In other words, they are killed. What’s more, they are killed in a most cruel and callous way through starvation or dehydration. And this in a health service that is supposed to be a national byword for compassion!

There are suspicions, based on much circumstantial evidence, that such patients are being dispatched via the LCP because — simply and crudely — the hospitals need their beds to meet overwhelming demand. This callous disregard for the most needy is of a piece with the all too frequent abuse of patients who are elderly, confused or difficult to manage and who may be treated in hospital with indifference, neglect or even cruelty. 

Doctors who have used the LCP are therefore suspected of having killed patients and of bowing to managerial pressure to clear their beds. A direct, destructive link has been created between bed pressure and the purity of therapeutic contract. This requires more examination. I will now describe how consultants balance the pressures on their service and the needs of their individual patients. This is my view and I cannot speak for others.

The performance of doctors is under continuous scrutiny. Markers of quality are recorded and fed back to us on a regular basis. For patients the most visible aspects of quality are the efficacy of treatment, its safety, and the preservation of their comfort and dignity. It is difficult to measure these things, but patient questionnaires, the monitoring of adverse events and, with the help of outside agencies, adjusted mortality statistics, do provide useful information. Another important measure is the ‘length of stay’ (LOS). This is the amount of time a patient stays in hospital after presenting with an acute problem. It is accepted that the shorter the LOS the more efficient the medical system. Of course a short LOS is acceptable only if the patient is diagnosed accurately, gets better and has a reasonably comfortable and safe experience. But if we can be sure that our medicine is working, the the next thing to concentrate on is its efficiency.

As more and more people reach their eighth and ninth decade of life, more emergency presentations occur. Having recovered from their illness many patients cannot go home because they have become weaker. In order to achieve discharge help from social services is required, for the provision of daily care at home, or placement in a residential or nursing home. This takes time. Beds are said, insensitively, to be ‘blocked’. LOS trends upwards. New patients keep coming to casualty, but there are fewer beds in which to place them. Pressure! What do we do about it? How do we shorten LOS?  Would I, would any doctor, really hasten a patient’s death to this end?

What do I think when I see a patient who may be dying? My attention is narrowed. I perceive a man or woman in the last days or weeks of their life and reflect on everything that has gone before. It is an unscientific, almost poetic moment. I am privileged, in a way, to meet an individual at this defining moment. Everything that they have done, all that they have seen, resides in that darkening mind, memories betrayed by the frailty of the tissue that has formed them.  I don’t know them well, of course. I find out what sort of family they have, how many sons or daughters or grandchildren or great-grandchildren. Those family members may have already been to the ward and I, or  members of my team, will have spoken to them. The details they provide form a rounded human being in the eyes of the doctors and nurses who barely three of four days ago had never heard of them. This rapid assimilation of impressions and emotions creates a three-dimensional image, albeit sometimes lifeless and uncommunicative, that is the centre of our decision-making.

As we consider whether to start the LCP we run through several mental processes. Is this really the end? Could a change in medication or management result in recovery and a successful discharge home? Would the patient wants us to work harder in an effort to avoid death or prolong life? Sometimes that the answer is obvious. Most experienced doctors will have seen over a hundred people reach the end of their life and the signs, although not scientifically verifiable or quantifiable, become recognisable. If it is obvious that death approaches despite our treatment we need to rationalise what we do to the patient. I have rehearsed some of these decisions in a previous blog post (‘What we talk about when we talk about death: a case’). What I don’t think about is money.

Part of my role as a responsible member of the NHS is to use resources appropriately and efficiently. Sitting at my desk I frequently review my use of particularly expensive treatments or procedures, but on the ward in front of frail patients, I am a clinician. I am not naive – I do need to be aware of resources and make sensible decisions on a day to day basis. But death is different. A good death, if there is such a thing, demands care and focus. It doesn’t cost much. Thoughts that do not enter my mind, as I look down on an emaciated, obtunded or cancer riddled patient, are bed management, targets, quality indicators or local health economics.

Yes, if the patient was to go home two days earlier, or to die two days earlier, the bed would be used by another patient, and a financial benefit could be calculated. My LOS data might look a little better.  But for the clinician such a calculation is irrelevant. When a doctor meets a dying patient all such thoughts are banished. The bond between doctor and patient is at its strongest at this unique moment, and will not be eroded by such intangible concerns.