An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

Clinicians dealing with adults refusing blood transfusion find themselves in an unenviable position, torn between wishing to preserve a patient’s life whilst also respecting their wishes.

Adults in England and Wales can refuse any treatment that a clinician proposes. Whilst they have capacity, they can do so by a simple verbal refusal. Anticipating such a time when she may lack capacity, an adult can make arrangements to avoid being given a specified treatment that she chooses not to have. This she can do by making an ‘advance decision’, which is a statutory construct that supersedes ‘living wills’ and ‘advance directives’ that were created by the common law. The statute that created advance decisions is the Mental Capacity Act (MCA) 2005.

Advance decisions may in some circumstances be informal; and for less contentious issues such as, perhaps, deciding in advance to refuse the placement of a nasogastric tube, will usually be respected without clinical difficulty. Unsurprisingly, advance decisions to refuse life saving treatment must conform precisely to the requirements of the MCA 2005; for instance, they are only valid if the patient has verified that the decision is to apply even if her life is at risk. Furthermore, the decision must be in writing, signed and acknowledged by the patient and a witness.¹

Alternatively, she may have created a Lasting Power of Attorney (LPA), a legal document empowering another adult to refuse the life saving treatment on her behalf. Again, for an LPA to be effective in authorising the refusal of consent for life-saving treatment, strict formalities must be observed². Crucially advance decisions enabled in these ways are valid only if they are applicable to the clinical circumstances in which the decision needs to be taken. One such circumstance, when the advanced decision of a patient who now lacks capacity must be scrutinised, is the need for an emergency blood transfusion.

In urgent circumstances, the clinician’s starting position is that if an adult patient with capacity refuses blood transfusion, notwithstanding that this decision may lead to his death, then his refusal should be respected. Naturally, alternatives to blood transfusion can be employed³, but the patient’s decision is determinative. In the surgical setting, a surgeon may choose not to operate on this basis, but has an obligation to refer the patient to a colleague who may agree to do so. Equally, in a patient who lacks capacity, but has made an advanced decision to refuse life saving blood transfusion, providing that the decision is relevant to the clinical circumstances and is valid, then the patient’s wishes should be complied with.

In a recent High Court application from Newcastle⁴, a 63 year old lady (LM), who had been a Jehovah’s Witness since the 1970s was found to be bleeding from her duodenal ulcer. She had been found wandering and confused outside her home; her Hb was 37 on presentation. Discussing her plight with the gastroenterologists, she was adamant that she did not want treatment with any blood products; they were sure that she had full capacity to make this decision, and that she was aware that she could die without blood transfusion. LM had received other medical treatment over the years, and her adherence to her faith, together with her steadfast refusal of blood in any circumstances, had been documented in her notes.

The conversation with the gastroenterologists was recorded in the notes, but no formal advanced decision to refuse life saving treatment existed. Similarly, she had not created a Lasting Power of Attorney enabling refusal of life saving treatment.

Three days following her discussion with the gastroenterologists, LM deteriorated, requiring intubation, ventilation and sedation. Henceforth, she lacked capacity for further decision making. Her clinicians felt that transfusion would improve but not guarantee her chances of survival. Perhaps anxious that this lady had not provided a valid advance decision to refuse a life saving blood transfusion, the clinicians approached the Court of Protection; seeking a declaration that withholding transfusion would be lawful in her case.

The court heard from Mr R, a representative of her congregation, who had known her for 40 years, and who brought with him letters from 3 other members of the religious group who knew her. R described LM as a formerly active member of the congregation, who fully subscribed to the tenets of the faith (including those opposing blood transfusion) and had taught them to others. Her beliefs on this matter had been consistent. The Trust’s position was that LM had made her wishes known, even with the knowledge of impending death. When considering her now, incapacitated, the Trust did not feel that transfusion was in her best interests, since it would be an affront to her established wishes.

The court found that LM had capacity during her early admission to decide whether to accept or refuse a transfusion; and that the advance decision she took prior to losing her capacity (to refuse transfusion) was both valid and applicable to her later more serious condition, when she had lost her capacity. It was therefore lawful to withhold transfusion.

LM died on the day of the judgement.

The judge also noted that he would have granted a declaration even if she had not made a valid applicable decision, since on the facts presented to the court; both from her congregation and the clinicians, a transfusion would not have been in her best interests. This was because her wishes and feelings and long-standing beliefs and values carried determinative weight. It was also relevant that the transfusion might not have been effective in saving her life.

This judgement serves to reinforce the principles of the MCA. Adults are presumed to have capacity, but this may be challenged by clinicians should they suspect otherwise. The facts show that LM’s clinicians tested her capacity, and found it intact.

The adult patient with capacity is entitled to defend herself against any clinical intervention she chooses to avoid, even if death may result. LM took the opportunity, whilst she had capacity, to assert her intentions to avoid transfusion. The MCA obliges us when dealing with a patient who lacks capacity to consider, as far as we can ascertain, any past and present wishes expressed by the patient; together with any beliefs and values that would be likely to influence her decision. In so considering her comments made when talking to the gastroenterologists, the Trust concluded that transfusion would not be in her best interests.

Perhaps regrettably, LM was not prompted at that stage to make an advanced decision to refuse life saving blood transfusion. If she had done so, her clinicians, it seems, would have been content to rely upon it when she finally lost her capacity due to the progression of her illness. Nevertheless, with the assistance of the Court of Protection (which exists precisely for this eventuality), LM’s informal assertions refusing blood were given full weight. Even in their absence, the court made it clear that pleadings from her congregation (together with previous refusals documented in her notes) would have been sufficient to allow the declaration to be made; that blood transfusion would not have been in her best interests.

Thus Newcastle Upon Tyne Hospitals FT v LM provides authority for asserting both that (i) an advance decision to refuse blood transfusion gives both clinicians and patients some certainty that blood transfusion will be withheld in the prescribed circumstances; and that (ii) in the absence of such a formal document, recourse to the Court of Protection (CoP) with substantial informal evidence of the patient’s wishes and beliefs can achieve the same result. We should view the CoP as providing an immense benefit to both clinicians and patients, ensuring that the tensions between preserving life and respecting wishes are independently adjudicated.

Newcastle Upon Tyne Hospitals FT v LM [2014] EWHC 454 (COP)
Mental Capacity Act 2005 s25
Mental Capacity Act 2005 s11)
Gohel MS et al. Avoiding blood transfusion in surgical patients (Including Jehovah’s Witnesses) Ann R Coll Surg Engl 2011; 93:

Adults who refuse blood transfusion in emergency circumstances