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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 Since the LCP was withdrawn, its commendable intentions besmirched by association with CQUIN payments and isolated poor practice, patients have continued to die.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.
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My conclusion – effective protocols make work* for those who follow them, and when any protocol or treatment pathway is withdrawn, other business rapidly fills the space.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 I have no evidence that care for the dying has suffered since the LCP was withdrawn, but know that I, personally, am spending less time on the little things.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.’
‘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.
* 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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