Personal directive - struggling with what to write

[tamilard]

I (28 f) have ALS and am in the process of making a personal directive, a document that designates an agent to make decisions for you in case you lose the capacity to do so. It's also for detailing things you do and don't want with your care.

This might include instructions on health care matters, like medical treatments, lodging, care plans.
You can include information about your religious beliefs, cultural preferences or other things to guide your agent(s) in decision making.

I've been putting off signing this for years because I just don't know what to write. I have some ideas but am not sure about things I may encounter in the future, like being on a ventilator or having a tracheotomy (the document can also be updated at any time). Honestly my ALS "specialists" are not helpful beyond writing prescriptions so I was hoping someone who actually has the disease can guide me.

Has anyone here made such plans for their future? Which examples did you write? I can't keep hiding from this. I was clinically dead a few months ago so I need to get on this in case something happens again. Thanks in advance!

 

[Marieb425]

Here in our state (WA) we have a POLST form which is posted on our fridge. My husband also worked with an attorney to create his advance directives. Once it was all completed we went into the office so he could sign the forms and it could be notarized.

I did a google search and here is a website that I found that has some sample forms that can be filled in that might be helpful. (For free)

You can also google a POLST form and look at that to see if where you live has something like that.

Advance Directives.

 

[lgelb]

There are many types of forms and guides, from the POLST or its Canadian equivalent, to rubrics like Five Wishes. And certainly everyone needs a health care power of attorney.

But no form can account for all the contingencies, so the best peace of mind may be ensuring that your PoA "gets" who you are, such that they can make (and implement if needed) choices if needed as you would if able.

Some common scenarios that come up in ALS are:
FTD or other florid dementia (there is a good advance directive package for Alzheimer's that may help); caregiver faces question of how much to err on the side of quantity of life when interventions such as feeding tube and BiPAP that can be difficult to start/support in dementia are required to extend life

BiPAP no longer sufficient to support life; trach or die-type choice (though my guess is 90%+ of these could be avoided with settings changes)

End of life -- PALS sees no reason to continue on; caregiver finds it difficult to let go