Difficult End-of-Life Decisions: How Can I Prepare?

I feel like we're approaching the end and there are decisions that terrify me: whether to take him to hospital, whether he should be fed by tube, what to do if he gets worse at night. How do I prepare so I don't make all decisions in a panic?

It's natural to feel scared when faced with these choices. No one is truly ready, but preparing in advance helps you decide with more serenity and less guilt.

Why it happens

In the final stage of dementia, complex decisions arise: hospitalise or keep at home, artificial feeding or prioritising comfort, what level of intervention makes sense. These are emotionally very heavy decisions, especially when made suddenly and without preparation.

Practical strategies

• Talk to the medical team in advance about what to expect and what the realistic options are.
• If there is an Advance Decision or known wishes of the person, use it as a guide.
• Agree with the team on a plan for nights and emergencies, so you don't make all decisions in a panic.
• Involve the family in conversations before a crisis, to avoid conflicts at the time.
• Consider support from palliative care, which helps prioritise comfort.

What NOT to do

• Do not make irreversible decisions alone and in the heat of the moment if you can avoid it.
• Do not blame yourself for choosing comfort over interventions that only prolong suffering.

When to seek professional help

Speak to your GP and the palliative care team or the National Network for Integrated Continuing Care (RNCCI). In acute situations, the NHS 24 Line (808 24 24 24) can guide you on what to do.

"Talking to the doctor about the end beforehand made all the difference: when it came, I already knew what he would want." — Anonymous Carer