Family disagreement about feeding after a severe stroke
Mrs A is an 81-year-old woman who suffered a large left middle cerebral artery infarct 10 days ago. She has a dense right hemiplegia, global aphasia, and a nasogastric tube for dysphagia. She has a history of moderate dementia, and before the stroke lived at home with her daughter, needing help with finances but not personal care. Her daughter, who holds lasting power of attorney for health and welfare, says her mother would never want a feeding tube and asks for it to be removed. Her son, who lives abroad, insists that everything must be done and wants a percutaneous endoscopic gastrostomy and transfer to a rehabilitation unit. The medical team documents that the patient is not imminently dying, is awake and interacting non-verbally, and that swallowing is unlikely to recover. There is no advance directive. The patient's GP recalls a conversation two years ago in which she said she did not want to be kept going by machines. The team has a 48-hour window before the family meeting.
1. Identify the ethical and legal principles at stake and how they apply in this case.
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Principles:
- Best interests: the decision must be made in the patient's best interests, not the family's preferences, and must consider her previously expressed wishes.
- Autonomy: the GP's recollection of her saying she did not want to be kept going by machines is evidence of her values; it is not an advance directive and is open to interpretation, but it should be weighed.
- Beneficence/non-maleficence: a PEG may prolong life and allow rehabilitation, but in a patient with dense hemiplegia, aphasia and moderate dementia the burden may be high and the achievable recovery limited.
- Legal framework: in England and Wales, the daughter as lasting power of attorney (health and welfare) can consent to or refuse treatment in the patient's best interests, but her decision must be in the patient's best interests, not her own. The son has no legal decision-making authority but should be heard.
- Least restrictive option and shared decision-making.
The conflict is not daughter versus son but what this patient would have wanted and what medicine can realistically offer. The team should avoid framing the choice as withdrawing care versus doing everything.
2. How would you structure the family meeting and what would you do if consensus is not reached?
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Structure:
- Prepare: agree the clinical facts among the team, identify who will lead, book a quiet room, allow an interpreter if needed, and give the family advance notice of the agenda.
- Set the scene: introduce everyone, agree the purpose, and elicit each person's understanding and concerns first.
- Share information: explain the stroke, the swallowing assessment, the likely prognosis and the uncertainty; be explicit that the nasogastric tube is a temporary measure and a PEG is a longer-term commitment.
- Explore values: ask the daughter what her mother would have said; ask the son what everything means to him and why. Acknowledge grief and disagreement.
- Summarise and propose a plan: for example, continue nasogastric feeding for a defined period (2–4 weeks) with a repeat swallowing assessment and a time-limited trial of rehabilitation, then review. This respects both positions and avoids a premature irreversible decision.
- Document.
If consensus is not reached: seek a second clinical opinion, involve the palliative care or ethics committee, and consider mediation. If the daughter refuses a treatment that the team believes is in the patient's best interests, the team may need legal advice; conversely, if the family demands a treatment that is not clinically indicated, the team is not obliged to provide it.
3. What role should the GP's recollection play, and how would you document the decision?
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The GP's recollection is important but must be handled carefully. It is hearsay evidence of the patient's values, not a legally binding advance decision. It should be documented verbatim where possible, with the date and context, and shared with the family. It does not automatically mean refusing a PEG: kept going by machines may refer to intensive care or ventilation, not to assisted feeding.
Use it as one piece of evidence in the best-interests assessment, alongside:
- the patient's current behaviour and apparent comfort;
- the views of those close to her;
- the clinical prognosis;
- the burdens of the proposed treatment.
Documentation should record the decision, the reasons, who was consulted, the disagreements, and the review date. If the decision is to withhold or withdraw the PEG, record the palliative plan (mouth care, symptom control, alternative feeding if appropriate). If the decision is to proceed, record the time-limited goals and the criteria for reconsidering.