If you were ever too unwell to speak for yourself, someone would have to decide things on your behalf. What treatment you would want. Where you would want to be. Whether you would want to go into hospital at all.
They would do their best. They would also be guessing, at a point when they were frightened and exhausted, and they would carry the decision afterwards.
Writing your preferences down takes that away from them. It is not a morbid exercise and it does not require a solicitor to begin.
The three levels, and the difference between them
People conflate these constantly and the distinction genuinely matters.
An advance statement is a record of your preferences and values. Where you would like to be cared for, your routines, your food, your religious or cultural needs, whether you would want to be at home at the end. It is not legally binding, but it must be taken into account when anyone makes a decision in your best interests, and in practice it carries real weight.
An advance decision to refuse treatment, sometimes called a living will, is different. It is legally binding in England and Wales. It sets out specific treatments you refuse in specific circumstances, and if it is valid and applicable, clinicians must follow it. If it covers refusal of life-sustaining treatment it has additional requirements: it must be in writing, signed, witnessed and state explicitly that it applies even if your life is at risk.
A health and welfare lasting power of attorney appoints a person rather than writing a rule. Instead of trying to anticipate every situation, you give someone you trust the authority to decide as things arise.
The last two interact, so the order in which you make them matters. Broadly, whichever was made later takes precedence over the earlier one on the same subject. If you are doing both, say clearly how they fit together and take advice.
Start with the ordinary things
The clinical decisions get the attention. The everyday ones affect far more of the actual experience.
- Where you would want to be cared for, and where you would want to be at the end if there is a choice.
- Who you would want with you, and who you would rather not have visiting.
- Food you like and food you cannot stand.
- Routines that matter: a bath rather than a shower, radio rather than television, a window open, the time you like to get up.
- Religious, cultural or dietary needs.
- Anything about your dignity that you would want respected, however small it sounds written down.
- Who looks after the pets.
Care staff meeting someone who can no longer tell them any of this describe a page like that as the single most useful thing a family can hand over.
Then the clinical questions
Harder, and worth a conversation with your GP rather than doing alone.
Whether you would want to be admitted to hospital or cared for where you are. Your view on attempted resuscitation. Whether there are treatments you would refuse, and in what circumstances. Whether you would want clinically assisted nutrition and hydration.
Two things to know. A DNACPR decision is a clinical decision, not a form you complete yourself, though your views must be sought and taken into account. And ReSPECT is a widely used process for recording recommendations about care in an emergency, developed through a conversation with a clinician. Ask your GP about it if you want your preferences recorded somewhere clinicians will actually see them.
Making it count
A document nobody can find at three in the morning changes nothing.
Give a copy to your GP and ask for it to be added to your record. Give copies to your attorneys and to whoever is likely to be with you. If you have an advance decision refusing treatment, make sure it is genuinely accessible, since paramedics act on what is in front of them.
Review it every couple of years, and after any significant change in health. Preferences move, and an advance decision written fifteen years ago may not reflect what you would say now.
If you are doing this for someone else
You cannot write it for them. What you can do is ask, early, while it is still a conversation rather than an emergency, and write down what they say in their words.
The moment to start is well before anyone thinks it is needed. After a diagnosis, capacity may still be intact for a long while, but the window closes, and it closes without an announcement.
Where FamilySafe fits
FamilySafe keeps the advance statement, any advance decision and the health and welfare LPA together, with the everyday preferences alongside them, shared with the people who would be at the bedside. Written down once, findable by the right people, at the point it matters.
Sources
- NHS: advance statement and advance decision to refuse treatment
- Mental Capacity Act 2005 and its code of practice
- Resuscitation Council UK: the ReSPECT process
- Compassion in Dying: free advance decision forms and guidance
This is general information, not medical or legal advice. Talk to your GP about your own circumstances, and take legal advice if you are making an advance decision refusing life-sustaining treatment.
