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Relatives must be empowered in end-of-life care decisions


AS A physician who has followed the issue of ‘end-of-life’ pathways closely over the last 15 years, the contents of the report ‘When End of Life Care Goes Wrong’, which Simon Caldwell wrote about in TCW on Sunday, are not a surprise. They are tangible proof of the terrible loss of patient autonomy which has occurred in the NHS in the management of the elderly and disabled patients. Six hundred families have come together as a clear statement that these end-of-life pathways are assailing families and leaving them bereaved and without closure. How did this come about?

Dame Cicely Saunders founded the modern hospice movement more than 50 years ago. She recognised that patients who were dying needed compassion and respect and that they should not be abandoned by their doctor but continue to receive the best medical care to the end. She was strongly against euthanasia and said that true palliative care ‘regards dying as a normal process and never hastens nor postpones death’.

The first clear departure from her principles was the Liverpool Care Pathway (LCP). The key component of the LCP was a mechanical syringe which continuously delivered three medications: morphine (pain killer), midazolam (sedative) and glycopyrrolate (reduces saliva). A nurse gradually increased the doses without need for a doctor’s input, based on a patient’s symptoms (‘anticipatory prescribing’). The LCP was successfully used on dying cancer patients so was extended to all patients who were deemed to be dying. It was quickly taken up into the NHS after 2005. An increasing public outcry against inappropriate deaths from the pathway caused the government to set up an inquiry which led to the Neuberger report, and the LCP was discontinued in 2013.

The use of the LCP had been facilitated by the Mental Capacity Act 2005 which made a fundamental change in the way that doctors look after patients. For those who lack the capacity to make their own health care decisions, the MCA established a ‘best interest’ group to take over end-of-life decisions. The revolutionary change in the MCA was that decisions are not taken by the consultant in charge of the patient but by a group of diverse carers including nurses and therapists, of which the doctor is only a member. Likewise, the input of the patient’s spouse or close family member was reduced to that of a member of the team. This poorly conceived legislation struck two heavy blows against medical patients, especially the elderly and disabled: the doctor’s responsibility for the patient at the medically and ethically most challenging time of their lives was taken away, and the view of the spouse or family member who knew the patient intimately was downgraded to the same as one of several carers who may just have met them.

This week’s report has made it clear that the flawed aspects of the LCP are still being used in hospitals. 1) Sick elderly are diagnosed as ‘dying’ even though this diagnosis is impossible to make with any reliability by even the most experienced physician. Making it leads only to a self-fulfilling prophecy. 2) The elderly are frequently not given adequate fluids by mouth, nasogastric tube or intravenously, or fluids are totally discontinued. One major reason for this is that the National Institute for Health and Care Excellence (Nice) ‘Care of Dying Adults in the Last Days of Life’ guidelines support the diagnosis of ‘dying’ and suggest that Specialist Palliative Care Teams are expert at this. Nice is equivocal about whether fluids are of value to the patient when they are ‘dying’, but the reality is that fluids are so essential that they cannot be stopped without endangering life.

A continuing major concern is that the sedative midazolam is still being given for ‘agitation’ or ‘anxiety’. This is a potent medication for short anaesthetic procedures and the British National Formulary (BNF/Nice) cautions against its use in the elderly. There is no evidence-based justification for giving it for agitation in the elderly. In addition, morphine is usually given together with midazolam in an infusion. The BNF warns that this combination can be lethal. The use of ‘anticipatory prescribing’ by nurses is also problematic as increased sedatives may increase patient confusion, leading to a further increase in sedation. Why does the Care Quality Commission, the government agency tasked with keeping patients safe in hospitals, not immediately clamp down on these practices?

Part of a physician’s role is to identify for the patient ‘what is or is not good and right for them’. Doctors have in the past been accused of being paternalistic, and there has been a drive to decision-making by the patient. It is surprising therefore to see it so curtailed by the Mental Capacity Act. The MCA justifies this by applying ‘best interest’ decision-making only where mental capacity has been lost. However, in the setting of acute illness in the elderly, mental capacity can easily be lost, particularly if the person becomes dehydrated or is given sedatives such as midazolam. End-of-life pathways which use these medications are therefore facilitating ‘best interest’ decision-making and exclusion of the doctor and next of kin. 

The elderly should be able to rely on their doctor and close relative to decide for them if they do not have mental capacity. In a recent academic paper Holm has described ‘best interest’ as ‘legal fiction’, as members of a best interest decision group are likely to put forward their own biases concerning acceptable quality of life or futility of treatment. They may be swayed by prevalent views in society or the convenience of the hospital and its staff. In many of the cases in ‘When End of Life Care Goes Wrong’, the next of kin opposed a decision to start an end-of-life pathway but was overruled, and the patient died. Sidelining of close relatives in end-of-life decision making has been the source of great anguish and guilt in families. The exclusion of the doctor as the key decision-maker at this critical point reduces rational scientific input into management and makes an emotion-based conclusion more likely. 

A recent review in the American Medical Association Journal of Ethics states that there is an increasing family-centred approach to decision making that might be called ‘post-autonomy’ medicine.  The goal of this approach is to develop a more sophisticated version of self-determination, that takes into account the social and cultural motivators for the patient’s decisions.

Case 2 in the ‘When End of Life Care Goes Wrong’ report gave rise to the legal challenge of the Aintree vs James case in 2013. In her Supreme Court judgment, Lady Hale clarified that patients’ relatives had to be closely included in any decisions, and carers ‘must consult others who are looking after him or interested in his welfare’. She said that it was right to have given great weight to Mr James’s family life, which was ‘of the closest and most meaningful kind’.

This restatement of how best interest should be ascertained clarifies and amplifies the way in which the Mental Capacity Act 2005 should be applied. It has however been poorly publicised and NHS trusts should be informed and alter their practices accordingly. 

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Rev Dr Patrick Pullicino
Rev Dr Patrick Pullicino
The Rev Dr Patrick Pullicino is a retired NHS consultant neurologist and is assistant priest at St Bede’s, Clapham Park, London.

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