NHS 'Planning Ahead' seems to be 'excluding' family-carers, and I am very annoyed by this and I want things to change.

mike stone 26/03/23 Dignity Champions forum

I am very annoyed, that while there is an increasing emphasis on 'thinking ahead' during end-of-life, NHS Advance Care Planning is stubbornly and unsatisfactorily not allowing family-carers during EoL-at-Home to be involved to the extent that they logically should be.

I suggest in my piece, that perhaps the only way to force clinicians and 'the system' to change, will be if patients and relatives become 'more assertive'. For example (the underlining and bolds will disappear when I paste from the PDF to this cover-text) I write in the PDF:

The ‘we’ means patients, family-carers, relatives and close friends. And,
unfortunately, it seems that ‘they’ – ‘they’ meaning clinicians and the system – will
not willingly change their attitude, so we will probably need to be much more
assertive. We need to challenge things which are wrong.

I’ll give a few examples.

If a husband and father is comatose in hospital, and his family are summoned to the hospital to discuss what should happen next, then if a doctor says ‘You need to help me to work out what is in his best interests’ we should forcefully counter with ‘Sorry – we all need to discuss things, so that we can each work out what is in his best interests’.

If a ReSPECT form is being completed for a capacitous patient, the patient should
insist on completing and then signing section 3 him/herself. And if the patient is
incapacitous, and a welfare attorney or court deputy would have legal authority over a decision made ‘in the now’, the attorney or deputy should challenge the signatures on section 4 of the form – pointing out ‘if this looks like an anticipatory best-interests recommendation, then I should be making and signing that, if it would be my decision to make if the event happened now’.

Family-carers in particular, should be aware of the legal situation of relatives during EoL - https://www.dignityincare.org.uk/Discuss-and-debate/Dignity-Championsforum/DNACPR-at-Home-and-a-Twitter-thread-what-is-the-legal-situation-forrelatives/1110/ - and if it is suggested they have done something wrong, we should ask ‘which law are you suggesting I have broken?’.


Whether you consider that CPR is being withheld ‘because of patient
autonomy’, or because of a best-interests determination, there is a simple

You need to already know, at the time the loved-one/patient arrests: you need
to know ‘My dad definitely doesn’t want CPR’, or you need to have already
worked-through a best-interests determination.

This is only possible if you have been ‘in a situation of ongoing contact’. Although it is clear, that family-carers, relatives and others ‘close to the patient’ are much better-placed than clinicians to apply section 4 of the MCA, you simply can’t do it during an arrest.

Associated files and links: