Relative's being asked to agree

mike stone 02/05/20 Dignity Champions forum

During this awful epidemic, there have been some interesting media headlines.

One of which, was that relatives were being asked to agree to things. The context involves a patient who lacks the capacity to make his or her own decisions, and who would potentially be badly affected by the virus. So, typically frail or nearing the end of life patients.

Suppose a doctor, asks relatives - here, suppose the doctor asks the patient's son - to agree to what I will describe as 'anticipatory decisions'.

I hope the son, asks himself and also asks the doctor, irrelevant questions, such as:

If I agree, who decided? Did I decide, did the doctor decide, or what?

What happens, if I do not agree?

What happens, if I agree but my sister disagrees?

I hope, more clarity on those types of question, might emerge from this crisis.

Post a reply

mike stone 02/05/20

Sigh. This Kindle unhelpful 'corrects' what I type.

The ruddy thing changed my 'relevant questions' to 'irrelevant questions'!

Jan Charles 03/05/20

Taking things a step at a time, I would like to know who is deciding whether or not the patient lacks capacity. In my experience, not all medical staff are rained to make these decisions, Also, any drugs the patient is on could cloud the issue.
There was a chief nurse on line who said it was her job to switch off the ventilators for Covid 19 patients..
Are there more gods on hospital wards than it is supposed there are in heaven?


Jan Charles 03/05/20

My reply should say Trained not rained-blooming electronic device.

sarah symon 03/07/20

everyone is finding it hard at the moment but it is getting better, there is a light at the end of the tunnel and no one should be forced to do anything they dont want to do, everyone has the right to do what they want.

Rosalie Smith 04/07/20

Who does decide if a patient lacks the the capacity ?
I had an issue with social service last year fighting the capacity my mum had? They were saying she had no capacity and deciding best interest for her, and I knew she had some still left.
Interesting who decides what is right or wrong. I did fight it and won,

mike stone 18/07/20

Hi Rosalie. In principle - and this is tricky! - the person making and acting on a best-interests determination must judge capacity: because unless you believe the person cannot make his/her own decisions, you do not have any legal protection ' for acting without consent'. I am pleased you fought and won - the problem you raise, is I think something that crops up quite often.

Rosalie Smith 18/07/20

Hello Mike,
I think it does crops up a lot, and from my own experience of fighting for my mums right to stay in her own home when became end of life was a very stressful time.
Mum had always said despite me moving to Essex she had always said she wanted to end her days in her own home living in London.
It became a stressful time for me fighting to keep her wishes, and I was up against social works who meet mum a couple of times and started to make the decision that she could not stay in her own home even with support going in.
As she moved into end of life the local hospice were involved and insisted she should stay in her own home where she had friends calling into see her, and care staff who knew her care needs.
I was frequently being informed mum had no capacity would not know where she was, I had to fight her corner to say she knew her bedroom and her friends who visited her.
Mum is still with me now and I am so pleased I put up a fight for her, unfortunately not all people are able to do this for their loved ones and it is often taken out of family hands.
I feel strongly that further guidelines need to be in place for someone's capacity at "end of life".

Jan Charles 20/07/20

In my opinion it is worth seeking an independent opinion such as a solicitor or psychiatrist. In my own case as I do not want my son to have this problem, my husband and I sought the advice of a good solicitor and now have everything in writing. WE HOPE!

I have just come out of hospital where even though I am a professional person, my wishes were ignored for some of the most basic requests, often by bossy little nurses who cited the hospital procedures as being what they had to follow even if they were contrary to NICE and WHO . I am now in the process of making a lengthy complaint but I am doing it via an independent advocacy charity. So in future, having worked for Social Services, and health. I would advise you do not go it alone and remember there are advocacy services. Also do your own homework and and check relevant professional codes of practice. Take someone with you and a recorder and diary everything.
However, you sound as if you have done very well and I wish your mum all the best.
Take care


Rosalie Smith 20/07/20

Hi Jan,
Thank-you for information, I will remember that, for me it was so stressful but I was not going to let them decide what was best for my mum. The Relatives and Residents Ass are great, they even wrote a letter for me to social service.
Sad we have to it appears fight for good care now most of the time and some of it is just basic care skills.
I do hope you are making good progress after being in hospital.
Kind regard's,