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.

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2 comments

  1. Have you ever experienced dehydration Phillip? I don’t mean feeling a little thirsty after a long shift, I mean severe dehydration, the kind that kills you? Because I have on a number of occasions and it is agony. I have several medical conditions that predispose me to dehydration and I would do anything to avoid being in such a state again.The idea that dehydrating a patient to death during their last days for what in some cases has been up to 20 days, is therefore deeply problematic for me.Just because someone who is drugged up to the eyeballs is too weak, immobile, frail and incapacitated to request fluids or even take fluids orally, it doesn’t mean they are not suffering.All those doctors who advocate removing patients’ fluids as part of the LCP should put their money where their mouth is, book into a hotel for two weeks and completely stop their own intake of fluids of any kind and see how it really feels, before making pronouncements from on high about the best way to help people to have a ‘good death’.

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