Advance Directive for Dementia

dancsfo

I saw some brief mention in this forum of an Advance Directive for Dementia but not a detailed discussion on how frequently people use it. It is used as a supplement to a standard advance directive. It is not legally binding, and is also a very uncomfortable thing to perform (e.g. do not prolong life), so I have a feeling it is not widely used. Anyone have experiences to share?

https://dementia-directive.org/

This radio show discusses difficulties of hewing to the wishes stated in such a directive (with transcript)

https://www.npr.org/sections/health-shots/2015/02/10/382725729/if-you-have-dementia-can-you-hasten-death-as-you-wished

A radio show that the advance directive site references (audio only):

https://www.wbur.org/onpoint/2018/02/04/a-living-will-for-alzheimers

terei

My mother told me repeatedly that if she could not feed herself, she did not want to be hand fed. My family was able to grant her this wish. My own directive states clearly that if I cannot feed myself, I reject being hand fed. (As well as having a DNR etc)

dancsfo

https://alzconnected.org/discussion/comment/216971#Comment_216971

It is good that your mother's wish was granted. Searching in this forum further, I find that the topic was discussed using various titles. Examples under "Having the uncomfortable conversation". or Hospitalization and treatment of every new symptom. I found those searching for "Five Wishes", which is a similar directive.

Some people have created their own directive, rather than using a prepared one such as the one I linked to. For example, it can specifically reject hand feeding, as you state.

I do not know if writing your own directive can add complications if not carefully written to respect state laws but at least it is written down, and more importantly, discussed with a LO previously.

fmb

Thank you both for this timely topic. I am in the process of revising my Living Will/Healthcare POA and DPOA documents to give my son HCPOA ( and DPOA) since they are currently in DH's name.

dancsfo

End of Life Choices New York has prepared an advance directive that includes stopping of assisted feeding of food and fluids.

But getting it accepted may be difficult, as this show from 2018 states

https://www.npr.org/sections/health-shots/2018/03/27/597499464/-aggressive-advance-directive-authorizes-stopping-food-in-cases-of-dementia

It is complex since not all people are supportive of this, even if stated in a directive. Searching for the term "VSED" (voluntarily stopping eating and drinking) in this forum provided some further info. Voluntarily doing so is possible for those with mental capacity. Complications arise when one does not have mental capacity, and a healthcare professional is involved in withdrawal of food and fluids.

A resource site on this topic.

https://compassionandchoices.org/our-issues/vsed/

and a legal viewpoint

https://www.aaepa.com/2018/09/voluntary-stopping-eating-and-drinking-a-new-frontier-in-dementia-decision-making/

It's unfortunate that the lack of good options leads people in need to have to consider these painful paths.