Advance Decision to Refuse Treatment - End of Life Choices - may be distressing

[Gillette]

Thanks for the clarification, Ellie.

I am hoping my partner will bring my ipad in tomorrow so that I can start looking at ADRT etc in more detail.

[Ellie]

Hi Dina,

FTD is FrontoTemporal Dementia - oh yes, MND is the gift which keeps on giving...

This is from the MNDA main website, I thought it might be easier for you if I copied and pasted info, rather than give links. It's aimed at Healthcare Professionals, but I think the info for the general population is lacking.

I know my MND Clinic may have a different opinion on the % of people affected by FTD, particularly in the latter stages of the disease, as in the incidence is higher, but it's also important to say that how one is affected by FTD varies enormously.

Frontotemporal Dementia
A small but significant minority of people experience severe changes that will be diagnosed as frontotemporal dementia (FTD). These changes are most often in behaviour and executive skills, but sometimes they are in language or conceptual understanding.

Executive function
In those with MND affected by cognitive change, the most prominent impairment is in executive functions. This may lead to problems with:

• setting and achieving goals
• planning and problem solving
• responding to new situations
• shifting attention or dividing attention between different tasks
• initiating and inhibiting responses.

Language
Some people also show changes in their ability to understand and produce spoken or written language. Some researchers have questioned whether language changes may be at least as common as executive function changes.
Behaviour

Behavioural impairment is a recognised feature of MND and problems may include socially inappropriate behaviour, disinhibited comments, impulsivity, apathy and inertia, loss of sympathy and empathy for others, and perseverative, rigid, stereotyped or compulsive behaviour. People who are cognitively normal can have profound behavioural abnormalities.
Social cognition

Understanding and interpreting other people’s thoughts/beliefs/feelings. Changes in social cognition can be challenging for carers/family of people with MND, as well as for health and social care professionals.

Unaffected aspects of cognition

Memory (acquiring, retaining and retrieving new information) is not usually affected, although some people may experience problems with their memory as a secondary consequence of executive dysfunction, along with problems with attention.
Problems with perception (dealing with the information gathered by the five senses) are rarely seen.

Love Ellie.

[Gillette]

Hi Ellie, you mentioned FTD in one of your posts. I wonder if you would tell me what it is, please? Thanks.

[Gillette]

Hi Ellie,

I just wanted to say that I shall be picking up on this thread shortly. However, for what's left of this week, I shall be making memories with my grandsons. We lost a lot of this week because of me being in hospital, amongst other things.

[Gillette]

Hi Ellie,

Thank you for your explanation. It reminded me of my sister's position. She had emphysema and had to go into hospital regularly to have her lungs scoured. She found it a distressing procedure and reached a point where she refused to have that treatment. She didn't want any life-prolonging treatments. She developed a chest infection which her GP began treating with antibiotics. I rang him to discuss the matter and he explained that the antibiotics would not prolong her life, they would simply make her more comfortable

[Ellie]

PS. PLEASE no Poldark spoilers - I've the first 3 episodes recorded, haven't had a girls night in yet to watch them!!! The boys roll their eyes when forced to watch it

[Ellie]

Hi Dina,

As an FYI, at the moment I've 2 sets of instructions - one for me as I am and one if I were to develop FTD, in which case I want to discontinue using NIV (BiPAP, Nippy), not to treat any infections and stop using my feeding tube.

The use of antibiotics too can be quite nuanced - for example, would I want to be treated if I were to get pneumonia next week? Yes I would. If that pneumonia reappeared 4 times over the next 2 months, would I want each time to be aggressively treated with antibiotics? No I probably wouldn't treat the 4th pneumonia. The "4" is an arbitary number for illustration only, but my point is, I get to say "enough is enough".

I'm a bit different (yeah, I know, you've all being saying it ) in that I'm in Palliative Care and get control over my care, so I have discussed my ongoing care and my death several times with my team. In practice, there's a dichotomy to my care, as I can choose to maintain life-sustaining interventions, which I have done and will hopefully do for as long as practicable (notwithstanding FTD involvement which, in all honesty, scares the pants off me...)

Love Ellie.

[Gillette]

Hi Dina,

(I just wanted to find a way of mentioning Aidan Turner! )

Love Kayleigh x

Is Aidan Turner the dark, moody one whose face is used to advertise Poldark?

[Kayleigh]

Hi Dina,

No need to apologise - I knew you were only joking! (I just wanted to find a way of mentioning Aidan Turner! ) - oops.. I think I might have gone off topic a bit (and it's not like me to do that! LOL).

I do agree with you though - there is a lot to read up about and its all serious stuff - so its nice to have a break from it sometimes and perhaps watch some light entertainment on TV .

Love Kayleigh x

[Gillette]

Hi Kayleigh,

Apologies for my poor attempt at humour, which clearly wasn't funny.

[Kayleigh]

Hi Kayleigh,

Thank you for the additional information. My goodness, there is so much to read! I'd better not decide to die yet, otherwise I shan't have time to read everything about it!

Hi Dina,

I promise I won't be offended if you don't need/want to read it all! ... and Poldark is just about to start on BBC1 (watching Aidan Turner is far more entertaining than reading my waffley posts!)

Love Kayleigh x

[Gillette]

Hi Kayleigh,

Thank you for the additional information. My goodness, there is so much to read! I'd better not decide to die yet, otherwise I shan't have time to read everything about it!

[Kayleigh]

Thanks Dina,

I think that I need to update my form and get more copies as mine is yellow.

Love Terry

Hi Terry and Dina,

I was interested to read in the MNDA's 'End of Life Guide' that a DNACPR (Do Not Attempt CPR) instruction is not legally binding, although it will be respected in most instances.

However, an ADRT is legally binding - and in England and Wales you can include a refusal of CPR in your ADRT.

Further information about the DNACPR is on page 68 in Section 9 of the Guide (I provided a link to Section 9 in my previous post).

Love Kayleigh x

[Kayleigh]

My understanding of the ADRT was that for it to be legally it has to be signed and witnessed. I think I also read somewhere about an ADRT being overridden in particular circumstances.

Hi Dina,

Concerning the requirement for witnesses, it says on page 4 of the ADRT form on the Mnda's website (link provided below) that one witness is sufficient but preferably there should be two (and as already mentioned by Ellie, they can't be people who stand to gain from your death).

http://https://dbsy278t81889.cloudfront.net/app/uploads/2015/04/19135922/my-adrt-blank-interactive-form.pdf

Further information about ADRT (including what information needs to be included on the form) can be found on pages 65 to 67 in Section 9 of the MNDA's 'End of Life Guide'.

Link to Section 9 (Advance Care Planning and Advance Decisions) of the MNDA'S 'End of Life Guide' provided below:-

(Warning: some people might find some of the information included in the 'End of Life Guide' upsetting)
http://https://dbsy278t81889.cloudfront.net/app/uploads/2017/05/19140014/eol09-advance-care-planning-and-advance-decisions.pdf

Love Kayleigh x

[Terry]

Thanks, Terry,

I have the lilac form - the Unified Do Not Attempt Cardio-Pulmonary Resuscitation. It was done soon after my diagnosis while I was still an in-patient. I have a copy in my purse, in the care agency's file and a copy in a couple of other places.

Thanks Dina,

I think that I need to update my form and get more copies as mine is yellow.

Love Terry