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Can patients rely on their advance decisions?

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Advance decisions allow an adult to refuse lifesaving treatment in a future where they envisage they may lack capacity to deliver that refusal personally. Although an advance decision allows us to refuse any treatment, it is the rejection of life-prolonging treatment that commands the attention of all clinicians, and rightly so.

In a case heard in the Court of Protection just before Christmas 2018, it became clear that Mrs Jillian Rushton, a retired nurse, had signed an advance decision in 2014. These are her words:

'…On collapse, I do not wish to be resuscitated by any means…I am refusing all treatment. Even if my life is at risk……In all circumstances of collapse that put my life at risk, this direction is to be applied.'

These words are of great importance, since they provide explicit instructions from a person with capacity who intends to influence her future treatment. One of the conditions that must be met by those drawing up an advance decision is that ‘specified medical treatments’ that the person wishes to refuse must be identified. Mrs Rushton’s advance decision was sent to her GP and filed. It should be noted that she did not specify a particular medical treatment, such as intubation, ventilation, renal replacement, or gastrostomy tube placement; instead she refused ‘all treatment’.

Her health and cognitive function then progressively declined, culminating eighteen months later in a fall and major head injury. The severity of her injury initially prompted palliative care, but she improved and within a few days nasogastric feeding was started. The court found no evidence that the hospital was made aware of the advance decision, either by the general practice or the family members.

As her condition improved, the decision was taken to replace her nasogastric tube with a gastrostomy, in part to allow her to be looked after at home by her son. It seems that the change to a PEG tube occurred almost simultaneously with a call initially from the hospital to the GP, then the GP to the hospital, probably in relation to the possible existence of an advance decision. The hospital’s record of the latter call shows that the GP relayed, ‘…the only ADR (advance decision) in place is in regards to "do not resuscitate".'

The court found that at some point in the relaying of its content, Mrs R’s advance decision had been misinterpreted, and that she would have intended to avoid gastrostomy placement. The judge went further, noting the ‘onerous burden' on the GP to ensure that (once lodged in the practice records) wherever possible, the advance decision document should be made available and placed within the hospital records. The court noted that ‘...It need hardly be said that it will rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation’.

This judicial instruction may be difficult to implement. Parliament brought the Mental Capacity Act into existence together with a code of practice, but created no machinery or suggestions as to how the advance decision might be delivered to the hands of the clinicians responsible for treating the patients. This is in contrast to the register of lasting Powers of attorney. In a technological age, a paper document sits uncomfortably within the system, and the practicalities of ‘flagging up’ the existence of almost countless individually significant considerations relating to patient safety and welfare (not least in the field of medications) continue to cause hospitals great concern. Equally, it seems likely that within general practice, maintaining alerts relating to the existence (and continuing applicability) of advance decisions may not be as straightforward as it sounds in a courtroom.

As an aside, if the hospital clinicians had received Mrs Rushton’s advance decision, although its presence may have ultimately resulted in the avoidance of a gastrostomy tube, the text of the refusal would have necessitated anxious and cautious analysis. In particular, she was refusing ‘all treatment’. Did Mrs Rushton mean also to refuse palliative care, which would otherwise enable her to retain dignity, comfort and consolation at the end of her life? Since that could be the effect of what she wrote.

The court found that ‘all treatment’ included gastrostomy feeding, but defined ‘all’ no further. Where should a clinician draw a line between what Mrs R likely meant to proscribe, whilst maintaining treatments that it is foreseeable, in reality, she would have wanted, such as the benefits of hospice care?

If the existence of this advance decision in Mrs R’s circumstances had been recognised, it is likely in any case to have led to an approach to the Court of Protection as to the extent of the treatments to which Mrs Rushton had intended her refusals to apply.

As a more general point, the advance decision has proved a problematic instrument. Patients, lacking clairvoyance, often fail to identify relevant specific treatments that they wish to refuse in the future because they have no idea of the clinical circumstances of their final illness. In the absence of a central electronic register of advance decisions, clinicians are often (perhaps usually) oblivious of their existence. But even if one is identified, questions relating to the patient’s true intentions persist.


Robert Wheeler
Department of clinical law, April 2019