Vegetable or Human

 

Tru here.

i rarely talk about terminology, because Language is transitory.
Context, context, context.
Context of time; In any specific location a word can mean one thing, but in a few years it might mean something else even in that location.
Context of location; if you are talking to someone in a different community or a different nation — the word can again have an entirely different meaning.
Context of surrounding words, phrases, and paragraphs; If you add context on the page, that can also entirely change meaning of a word.
So mostly i try to avoid topic of terminology, because too much possibility of misunderstandings.

But there is a huge difference between plant life and animal life.  Offended by CBS’ 60-Minutes’ decision to include Mike’s opinion that Carol has become “a vegetable” in their finished episode, and my reply to them is further down on this page.

.

I am offended by the medical term “vegetative state” which apparently became popular at the birth of bioethics (1978 Belmont Report).

Term “vegetative” is “relating to, composed of, or suggesting vegetation” (plant life).
i do not believe there is EVER a validation for suggesting that a person is related to a vegetable.
There is a live plant, the process of death, and a dead plant.
There is a live person, the process of death, and a dead person.

Please note the research Links at bottom of this page.

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Terminology can be very important and terms like “disappear”, “gone”, and “vacant” contribute to the perception that no Person exists any longer; only a shell.
That is often a theory, but far from a proven theory (or fact) and contributes to the thought that we should suicide while we still have the ability,
in order to prevent unneeded financial & energy drain on our loved ones.

If our person is no longer alive then suicide only makes sense. 

In contrast, if we are alive, but only able to be responsive for brief unpredictable moments,
(with days, weeks, and months of no ability to outwardly respond)
then you are motivated to continue looking for those moments when our “personhood” peeks from behind the curtain of disease,
… & sparkles.

But if you are not looking … then you will miss the moment. Please look for us.”  — TLK

What is a “vegetative state” ??

BrainFoundation.org.au helpfully states the following:

“… A person in a vegetative state may open their eyes, wake up and fall asleep at regular intervals and have basic reflexes, such as blinking when they’re startled by a loud noise, or withdrawing their hand when it’s squeezed hard. They’re also able to regulate their heartbeat and breathing without assistance.

However, a person in a vegetative state doesn’t show any meaningful responses, such as following an object with their eyes or responding to voices. They also show no signs of experiencing emotions nor of cognitive function. …” ((font emphasis my own))

.

Dr Steven Novella, Neurologist at Yale, states in ScienceBasedMedicine.org :

“… many patients with a diagnosis of PVS ((Persistent Vegetative State)) have signs of minimal consciousness if they are examined more thoroughly. While it is disappointing that the misdiagnosis rate remains so high, such results are not surprising. The diagnosis of PVS is partially based on the demonstration of a negative – the lack of any sign of even subtle and transient consciousness. Demonstrating a negative is always only as reliable as the thoroughness of the search, and it is not surprising that a more thorough search is therefore finding more patients with subtle signs of consciousness.”  ((font emphasis my own))

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Apparently the American Neurological Association discouraged “coma vigil” term in preference to “vegetative”, but i totally disagree.  I think term “coma vigil” is entirely appropriate because this is a time when vigilance is still very important.  Too many times folks have come out of coma or “vegetative state” with news of their perceptions during the time period … when it was said they had no emotions or cognitive functions.  This is a PERSON … not a vegetable. !!!

.*.

On August 16, 2018,
I sent this email response to CBS regarding the 60 Minutes episode
posted Aug12, 2018 with Dr. Jon LaPook, Mike Daly, and Carol Daly who has Alzheimer’s.
>> https://www.cbsnews.com/news/60-minutes-alzheimers-disease-following-a-couple-from-diagnosis-to-the-final-stages/

.*.

Thank you, CBS, for bringing attention to needs of care-partners for folks with Alzheimer’s and other forms of dementia.  i think it is important to share benefits of music and probable need for facility in late-stage care. … but … disappointed that even in early-stage interviews with Mike and Carol Daly, CBS really mostly emphasized decline rather than possibilities for activities Carol WAS able to participate in and enjoy. Extremely disappointed that CBS allowed term “vegetable” (which literally de-humanizes the individual) and Carol being two different people.

Just because she has lost almost all physical and cognitive ABILITIES does not mean she is not the same person !!! Even with Alzheimer’s (or any of the more-than-100 other types of dementia) everyone’s path is different, and almost always, if folks spend enough time SEARCHING for glimmers of that person … they will find that the person is still there … just progressively unable to express themselves and perhaps spending almost all their time in their individual world.

i know that Mike’s opinion is that his wife has become a vegetable, and i know there is a theory that the person is no longer present — only tissue and blood, etc. i have found no data to support that THEORY and it can be an extremely unhelpful perspective for careful, considerate care of the PERSONS who no longer have the ability to express themselves.

 

This episode felt like fear-mongering.
There is enough fear even in a carefully-balanced and thoughtful portrayal, without reaching for it.

 

Would have been good to have greater context on what kind of conversations this couple could have had during the previous years, etc .
Suggest contacting Dementia Mentors, Dementia Action Alliance USA or other organizations who strongly consider input from folks who are living with the disease.

DAA (Dementia Action Alliance) plans a conference in Atlanta GA June 2019.  You might want to contact Karen Love or Jackie Pinkowitz for more information on “Re-Imagining Dementia”.

Gary LeBlanc at Dementia Mentors is an excellent resource.

Teepa Snow’s “Positive Approach” could be helpful.

.*.

Related Links:

CBS Episode >> https://www.cbsnews.com/news/60-minutes-alzheimers-disease-following-a-couple-from-diagnosis-to-the-final-stages/

Dementia Mentors  >> https://www.dementiamentors.org/

Dementia Action Alliance USA  >> https://daanow.org/

Teepa Snow  >>  http://teepasnow.com/

Retired Dr Jennifer Bute’s website >>  http://www.gloriousopportunity.org/

And my own website >>  https://truthfulkindness.com/

.*.

Some of the Links i visited on this issue are below:

Please note the “Diagnosis” section >> https://en.wikipedia.org/wiki/Persistent_vegetative_state

BrainFoundation >> http://brainfoundation.org.au/disorders/vegetative-state

Dr Steven Novella, Science-Based Medicine >> https://sciencebasedmedicine.org/minimally-conscious-vs-persistent-vegetative-state/

New England Journal of Medicine >> https://www.nejm.org/doi/full/10.1056/NEJM199405263302107

2001 Yearbook of Intensive Care and Emergency Medicine >> www.coma.ulg.ac.be/papers/vs/Coma_Yearbook2001.pdf

My entries on Terminology >> https://truthfulkindness.com/tag/terminology/

CBS page for response >> http://audienceservices.cbs.com/feedback/feedback.htm
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* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © 2018Aug 20. 10hrs investd for text & 3hrs for graphic.  Tags are: dementia, human, PLwD, terminology, vegetative state.

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2 thoughts on “Vegetable or Human

  1. Tru, once again you have opened my eyes wider. You are such an inspiration. I do hope your letter will spark a movement within the medical community to reconsider their defeatist approach to dementia diagnosed individuals. They certainly should avail themselves of the wealth of knowledge from the sources you quoted and you should be included in those sources as well.

    Thank you again and carry on bravely.

    Ellie

    Liked by 1 person

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