my experience of this is that there are varying levels of how involved people living with MND wish to be with the mdt. this can vary from high levels of engagement wanting to plan care together to others who wish to take more of back seat or live for the day. i guess acting in a person centred way i try to get to know the person and gauge how much support they would like. there are many times when we make recommendtions that we think are in someones best interests - but whatever reason they dont wish to persue this course of action. of course I explained the risks and benefits of all courses of action and remain supportive of them whatever they decide.  i am not talking here about those with significant cogntive impairment - if they lack capacity to make a certain decision (despite best efforts to support them to make an informed decision) then we will discuss with their family / carers / rest of care team and try and act in their best interests. sometimes this is person centred care. the decisions of course need to be proportionate to the risk and potential outcomes. 

one of the key things I have come to learn over the few years of doing this job is to try and be led by the person, particulalrly on the first meeting, rather than thinking i need to know a, b, c & d. part of this is about being seen to listen and understand their perspective which hopefully helps to build trust. I believe clients do need to trust their coordinator  and MDT. without this it is difficult to undertake effective advance care planning. 

sometimes I have encouraged clients to say no to visits and ensure that they have days free from appointments to do nice things with their friends and family. or just to do nothing at all but have a day free for themselves. 

i recently arranaged for a gentleman with MND + severe fTD to have music therapy as this was / is his only way to express himself 

person centred care needs to extend to family and carers also and if the person with mnd is happy, I try and involve family members in care planning and education also 

these are just a few thoughts