Advance decisions help?

[Vicky86]

Hello all,

I’m trying to help my dad set up things for the future as doctor said we should. Problem is he’s in hospital at the moment so I was told to ask them for the forms etc - whenever I ask I’m told the doctor isn’t available or in to discuss this or sort this for us.

Can anyone point me in the right direction as to advice or access to forms and what we need to do please?

We want to document everything before dad loses his speech but he is deteriorating quite rapidly in many ways so we may not have much time

Thanks

[Gillette]

Hi Vicky,

The MND Association website has a useful document about the Advance Decision to Refuse Treatment (ADRT). This is the link:

https://static.mndassociation.org/app/uploads/2017/05/19135942/14a-advance-decision-to-refuse-treatment.pdf

I found the MNDA booklet really useful.

Is your Dad on a ventilation ward? If he is, it would be worth talking to one of the doctors (no need to mention the ADRT) to ask about what choices there are about ventilation; if they would be likely to withdraw it; if so, in what circumstances; how they would manage symptoms. It would also be wise to discuss where your dad would prefer to be at the end of his life.

Sending hugs to help you deal with this difficult issue.

[Terry]

Hi vicky,

As well as what Dina has said, the doctor might also be thinking of 'power of attorney' , both financial and medical ones.

Does your dad have other ways of communicating?

Love Terry

[Sueb]

Hi Vicky

Ask to talk to your Mnd care nurse or the palliative care team and they should help you with this. Steve has spoken with both. We will be having a meeting with our MND nurse when Steve comes out of hospital to get his wishes written down.

Sue