Family-requested non-disclosure and a request for unproven therapy

Capacity and truthfulness come first. The patient is alert, oriented and has capacity; his direct question must be answered honestly, at his pace, without ambush or overload. The daughter's request reflects a protective cultural model rather than malice, and should be explored rather than simply overruled.

Approach:

1. Acknowledge the daughter privately: 'I can see you want to protect him, and that comes from love. In my experience most patients know more than families fear, and not knowing can increase anxiety. I cannot lie to him if he asks, but I will not force information on him either.'
2. Ask the patient how much he wants to know and who he wants present: 'Some people want every detail; others want the big picture and prefer the family to make decisions. What would you prefer?'
3. Answer honestly: 'The cancer has spread and cannot be cured. I cannot give an exact time, but for many people in this situation we are talking about months rather than years. I would like to talk about what matters most to you.'
4. Explore his concerns - pain, being a burden, unfinished business - and offer to continue with his wife and daughter present.
5. Document the conversation, his stated preferences, and who was present. Do not collude with deception, but do not impose unwanted information on a patient who asks not to be told.

Respond without dismissing him; the request reflects hope and a wish for control. Ask what he has read, who suggested it, and what he hopes it will achieve. Often the underlying question is 'is there anything left that could help me?'

Content of the discussion:

• Explain the evidence: there is no phase III evidence that high-dose vitamin C or hyperthermia improves survival in metastatic pancreatic cancer, and some regimens carry risk of harm (burns, dehydration, electrolyte disturbance, and interactions with chemotherapy).
• Discuss the practical consequences: €40,000, travel burden, interruption of proven palliative treatment, and the risk of losing the window for good symptom control or a clinical trial.
• Distinguish this from research: if he wants to keep fighting, refer him to a phase I unit or discuss available trials. This respects his autonomy while keeping him within evidence-based care.
• State your position clearly and without judgement: you cannot recommend or provide the treatment, but you will not abandon him and will continue to care for him whatever he decides.
• Re-check capacity, screen for depression, and involve the family in the discussion.
• Document that he was given the information needed to make an informed choice, and that refusal of proven treatment would be recorded.

Misaligned information is a patient safety issue. If one clinician tells the patient he is improving while another discusses end-of-life care, trust collapses and decisions are made on false premises.

Steps:

• Hold a family meeting with the patient's consent, including his wife, daughter and a nurse specialist, and an interpreter if language or cultural nuance requires it. Agree what the patient knows and what he wants to know.
• Use ask–tell–ask: 'What is your understanding of where things are?' then give information in small chunks, then check understanding.
• Inform the wider team - ward staff, community palliative care, GP - of the agreed position, and place a clear note in the record: patient aware of advanced disease, wishes full information, family informed.
• If the family persists in requesting non-disclosure, explain that the team will not lie but will not force details; escalate to a senior clinician or the clinical ethics committee if conflict threatens care.
• Move the conversation to what matters: advance care planning, preferred place of care, and symptom control. Offer specialist palliative care early, which improves quality of life.
• Record capacity assessments whenever treatment refusal is discussed, and debrief staff afterwards, since these conversations carry an emotional load.