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[Serious] Total locked in syndrome and assisted dying
#1
Total locked in syndrome and assisted dying
I recently started work in a care home for people with profound neurological illnesses. Several of the residents can clearly be defined as being "totally locked in."  From wikipedia, for those unfamiliar with the term:

Quote:Locked-in syndrome (LIS), also known as pseudocoma, is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking. The individual is conscious and sufficiently intact cognitively to be able to communicate with eye movements.[3]  results are normal in locked-in syndrome. Total locked-in syndrome, or completely locked-in state (CLIS), is a version of locked-in syndrome wherein the eyes are paralyzed as well.

They cannot move their eyes to communicate, they cannot eat or drink nor move a single muscle to, say, scratch their nose, and are kept alive through having nutrients pumped into their stomachs through a tube. To say these people have a low quality of life would be a serious understatement, IMO. I do not know how many are suffering with this globally, but it's probably far more prevalent than is commonly thought due to the taboo and, IMHO horrific nature of TLIS and, of course, the fact these afflicted people are incapable of speaking up for themselves.

It strikes me that given the likelihood these individuals are, shall we say, severely unhappy with their lot, that euthanasia seems the safer option rather than risking their living a protracted, potentially decades lone, living...well, hell. Sometimes it even crosses my mind that although I've moved into this line of work to care for people, what I'm actually doing is torturing many of them through sustaining their lives. Dark thoughts indeed.

Speaking for myself, if I could carry a card in my wallet that said "in the event of total locked in syndrome, please administer an overdose of morphine" I would. I'm in support of having the option of assisted suicide for those with agonising and incurable medical conditions anyway yet this graphic experience of caring for those locked in has doubled down my resolve on this issue, call it euthanasia if you will.

I've started campaigning with https://www.dignityindying.org.uk/ 

Thoughts and experiences? Thanks.
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#2
RE: Total locked in syndrome and assisted dying
A couple of things. Do these patients have a locked in diagnosis or do they simply fit some or all of the symptoms? If it's some other diagnosis their level of neurologic function may be different and need to be assessed.

If they can't communicate how do you know that they are in agony and/or want euthanasia? Is there a chance that the agony is yours? Don't get me wrong, I applaud your empathy.

I'll just stick this here: https://rarediseases.org/rare-diseases/l...-syndrome/
I don't have an anger problem, I have an idiot problem




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#3
RE: Total locked in syndrome and assisted dying
As someone with a neurological disability I’d be so wary of able-bodied people deciding who’s life is “hell”. After all there has been many a person to suggest that I shouldn’t be alive or that my life isn’t worth it.

https://www.als.org/navigating-als/livin...munication

https://tnartscommission.org/permanentco...y-worsham/
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#4
RE: Total locked in syndrome and assisted dying
Anyone should have the right to end their life on their own terms, but it has to BE on their terms. The locked in can’t give consent for such an action, and to end their lives would be murder.

Boru
‘Let me never fall into the vulgar mistake of dreaming that I am persecuted whenever I am contradicted.’ Ralph Waldo Emerson
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#5
RE: Total locked in syndrome and assisted dying
Thank you all for the responses - as brewer points out (thankfully) I might be conflating permanent vegetative state with total locked in syndrome and I am not aware of the specific diagnoses for the utterly paralysed residents. I've only been working there two weeks - rollercoaster, thy name is care work. 

Just to say, Boru me old mucker, this is far from clean cut straight forward type stuff as your comment appears. From wiki on permanent vegetative state: 

Quote:Lack of legal clarity[edit]
Unlike brain death, permanent vegetative state (PVS) is recognized by statute law as death in only a very few legal systems. In the US, courts have required petitions before termination of life support that demonstrate that any recovery of cognitive functions above a vegetative state is assessed as impossible by authoritative medical opinion.[5] In England, Wales and Scotland, the legal precedent for withdrawal of clinically assisted nutrition and hydration in cases of patients in a PVS was set in 1993 in the case of Tony Bland, who sustained catastrophic anoxic brain injury in the 1989 Hillsborough disaster.[4] An application to the Court of Protection is no longer required before nutrition and hydration can be withdrawn or withheld from PVS (or 'minimally conscious' – MCS) patients.[6]

This legal grey area has led to vocal advocates that those in PVS should be allowed to die. Others are equally determined that, if recovery is at all possible, care should continue. The existence of a small number of diagnosed PVS cases that have eventually resulted in improvement makes defining recovery as "impossible" particularly difficult in a legal sense.[7] This legal and ethical issue raises questions about autonomy, quality of life, appropriate use of resources, the wishes of family members, and professional responsibilities.
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#6
RE: Total locked in syndrome and assisted dying
(December 6, 2021 at 12:40 pm)Lawz Wrote: Thank you all for the responses - as brewer points out (thankfully) I might be conflating permanent vegetative state with total locked in syndrome and I am not aware of the specific diagnoses for the utterly paralysed residents. I've only been working there two weeks - rollercoaster, thy name is care work. 

Just to say, Boru me old mucker, this is far from clean cut straight forward type stuff as your comment appears. From wiki on permanent vegetative state: 

Quote:Lack of legal clarity[edit]
Unlike brain death, permanent vegetative state (PVS) is recognized by statute law as death in only a very few legal systems. In the US, courts have required petitions before termination of life support that demonstrate that any recovery of cognitive functions above a vegetative state is assessed as impossible by authoritative medical opinion.[5] In England, Wales and Scotland, the legal precedent for withdrawal of clinically assisted nutrition and hydration in cases of patients in a PVS was set in 1993 in the case of Tony Bland, who sustained catastrophic anoxic brain injury in the 1989 Hillsborough disaster.[4] An application to the Court of Protection is no longer required before nutrition and hydration can be withdrawn or withheld from PVS (or 'minimally conscious' – MCS) patients.[6]

This legal grey area has led to vocal advocates that those in PVS should be allowed to die. Others are equally determined that, if recovery is at all possible, care should continue. The existence of a small number of diagnosed PVS cases that have eventually resulted in improvement makes defining recovery as "impossible" particularly difficult in a legal sense.[7] This legal and ethical issue raises questions about autonomy, quality of life, appropriate use of resources, the wishes of family members, and professional responsibilities.

It’s clean cut straight forward as far as I’m concerned.

But you raise fair points, which is why everyone should have a living will/DNR.

Boru
‘Let me never fall into the vulgar mistake of dreaming that I am persecuted whenever I am contradicted.’ Ralph Waldo Emerson
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#7
RE: Total locked in syndrome and assisted dying
Cool, BTW they call it DNAR (Attempt) in the hospital I'm in....and most residents have chosen that option, according to the board.
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#8
RE: Total locked in syndrome and assisted dying
How do you feel about euthanasia for someone who is suffering and wants to end it but is physically unable to do so himself?
The meek shall inherit the Earth, the rest of us will fly to the stars.

Never underestimate the power of very stupid people in large groups

Arguing with an engineer is like wrestling with a pig in mud ..... after a while you realise that the pig likes it!

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#9
RE: Total locked in syndrome and assisted dying
(December 6, 2021 at 1:45 pm)zebo-the-fat Wrote: How do you feel about euthanasia for someone who is suffering and wants to end it but is physically unable to do so himself?

I think that ultimately an option should be made available. However there are many many factors that need to be assessed prior to making the option available and should be considered on a case by case basis.
I don't have an anger problem, I have an idiot problem




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#10
RE: Total locked in syndrome and assisted dying
(December 6, 2021 at 1:45 pm)zebo-the-fat Wrote: How do you feel about euthanasia for someone who is suffering and wants to end it but is physically unable to do so himself?

I'd argue the best way to avoid any end of life conflicts over your own life, is to put it in writing and or video as to what your wishes are in case you cannot make decisions for yourself. My mom had a written and very clear DNR legal document. 

I can say that even if I was aware but could not move or speak, that is a severe quality of life loss. Many times in my late mother's decline, she expressed hating the hospital, not science, just being there, she hated that her body wasn't functioning like here very active life, and hated being poked and prodded. Quality of life matters. My mom didn't quit, she was simply tired. The human body wears out, every time. 

I'd only say that end of life decisions should not be forced by government, but merely a decision made between the terminal person and their doctor. 

Putting it in writing and or on video really makes it easier on everyone.
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