A Jehovah's Witness, a GI Bleed and a Daughter Who Disagrees
Mr D is 67 and is admitted with a large upper gastrointestinal bleed; haemoglobin is 62 g/L, blood pressure 96/58 mmHg and heart rate 108/min. He has cirrhosis, is drowsy but oriented to person and place, and has a signed advance decision refusing blood products, made three years ago when he was a Jehovah's Witness member. He now says, 'I don't want blood, but I want everything else.' His daughter arrives and says, 'He doesn't mean that; he's confused, and last week he told me he'd take blood if he needed it.' The registrar says the refusal 'isn't valid because he's hypotensive and his lactate is 4.6'. The team wants to give tranexamic acid, vitamin K and consider endoscopy, which may need sedation and possibly transfusion if bleeding cannot be controlled.
1. Is the advance decision valid and applicable, and does Mr D have capacity now? How should the team proceed?
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Advance decision: first check validity and applicability. A written advance decision refusing life-sustaining treatment must be signed, witnessed, and state that it applies even if life is at risk. It must not have been withdrawn or overridden by a later decision. If it meets those conditions, it is legally binding for the treatments it covers. Blood transfusion in a major GI bleed is likely to be life-sustaining, so the exact wording matters.
Capacity now: capacity is decision-specific and time-specific. Hypotension and a lactate of 4.6 are red flags but do not automatically remove capacity. Assess formally: can he understand the information, retain it, weigh it and communicate a choice? His statement 'I don't want blood, but I want everything else' shows he can distinguish treatments. If he is drowsy or fluctuating, reassess after resuscitation and treat reversible causes such as hypovolaemia, infection or hepatic encephalopathy. If doubt remains and the decision is urgent, seek senior and legal advice.
The daughter's claim: a previous verbal statement can be relevant evidence, but it does not automatically override a written advance decision or a capacitous refusal. Explore when and how it was said. If he has capacity, his current wish takes priority. If he lacks capacity and the advance decision is invalid, act in his best interests, considering his known wishes.
Conclusion: if the advance decision is valid and applicable, do not give blood products, even if the team disagrees. Explain and document.
2. What treatments can still be offered, and how should the team handle endoscopy and the possibility of uncontrolled bleeding?
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What can be offered: resuscitation with crystalloid, oxygen and monitoring; tranexamic acid; vitamin K; proton-pump inhibitor infusion; correction of coagulopathy within the limits he accepts; antibiotics if infection is suspected; analgesia; and urgent endoscopy if it can be provided without blood products.
Endoscopy and sedation: sedation may impair capacity. If he has capacity and consents, proceed with the minimum sedation needed. If he loses capacity mid-procedure, an advance decision still applies to transfusion. Discuss with the endoscopist and anaesthetist in advance, because uncontrolled bleeding without transfusion may make endoscopy futile or unsafe. This is an ethical and clinical judgement, not a technical one.
If bleeding cannot be controlled: shift to comfort-focused care. Involve palliative care, treat pain, nausea, breathlessness and distress, and allow family presence. Do not give blood 'just in case' - that would be battery if the refusal is valid.
If capacity is lost and the advance decision is not valid: make a best-interests decision, taking account of his values, the daughter's information and the likelihood of benefit. Seek a second senior opinion and legal advice if there is disagreement. Emergency treatment can be given to stabilize while the question is resolved, but not in defiance of a valid refusal.
Frame it: 'everything else' should be delivered actively, not as a lesser option.
3. How should the discussion with the daughter and the documentation be handled?
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Document contemporaneously:
- the exact words he used, and that he was oriented and able to explain the consequences;
- the capacity assessment, covering the four elements, and who was present;
- the advance decision: date, signature, witness, wording and where the original is held;
- that the daughter's view was heard and why it did not override his current decision;
- the treatments offered, accepted and refused, with reasons;
- the names of senior clinicians or legal advisers contacted.
Communication: explain to the daughter that confidentiality limits what you can share, but that her father has agreed to her involvement. Focus on what is being done to keep him comfortable. Acknowledge her distress without promising transfusion. Ask her to put any evidence of a change of mind in writing for the team.
Systems: put a clear alert in the electronic record and at the bedside, brief the on-call team at handover, and ensure the transfusion laboratory knows not to issue blood without senior confirmation. Involve the ethics committee or legal team early if conflict escalates. Review afterwards to check that the advance decision was easy to find, because a common failure is that it exists but nobody sees it.