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.

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