Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

Post by NF52 »

Tincup wrote: Wed May 24, 2023 6:58 am I'm in the camp of someone who'd like to figure out how to do this if dementia comes my way.
circular wrote: Wed May 24, 2023 9:13 am...I don't have experience in late stage Alzheimer's care and whether a patient whose having swallowing issues can still ask for food and water.
...
... If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.
Alternative Options to Hasten Death
My mother and mother-in-law, each with moderate stage dementia, had palliative care that helped them and their loved ones find peace in the last few days of their lives about 15 years ago, with the use of a form called MOLST (Medical Orders for Life-Sustaining Treatment) in New York State. (In other states this is call a POLST (Physician...)

As health care proxy, I had a long conversation with the palliative care doctor about my mother's severe hear failure (which I was aware of) and her prognosis upon admission to the ER with severe symptoms the night before. He then had an even longer conversation with one of my sisters, who was convinced that my mother's pulse rate of 100 was "perfect" and that she would "wake up." Instead of contradicting her, he gently explained that if she did wake up, she could be moved to a rehab facility, but in the meantime it would be kind to NOT have monitors beeping and blood tests being run daily, as happened in the nursing home. Palliative care doctors support the patient and are VERY skillful in talking with people about their hopes, fears and values.

My mother had repeated morphine to reduce the discomfort of "active dying" from respiratory and heart failure, yet was able to sit up and smile broadly (with eyes closed and no speech) for more than 30 minutes on evening while we shared how much she meant to us. She died without regaining consciousness 3 days later. My MIL similarly had palliative care at a specialized center of a nursing home, where she died peacefully with no need to resort to feeding tubes for someone who showed no responsiveness after a sudden (probably vascular) change in status.

MOLST is not what most of us might prefer: to choose the time and manner of our death, especially with dementia, as Medical-Aid-In-Dying (MAID) laws provide for in the US. VSED, which some with moderate dementia could still choose, requires planned hospice support for significant levels of pain.

I'd encourage anyone with a parent or loved one with a diagnosis of dementia to have the conversation on values and preferences early, and as the disease progresses to talk with care providers about use of a MOLST/POLST.
MOLST is intended for patients with serious health conditions who:
  • Want to avoid or receive any or all life-sustaining treatment;
  • Reside in a long-term care facility or require long-term care services; and/or
  • Might die within the next year.
Completion of the MOLST begins with a conversation or a series of conversations between the patient, the patient's health care agent or surrogate, and a qualified, trained health care professional that defines the patient's goals for care, reviews possible treatment options on the entire MOLST form, and ensures shared, informed medical decision-making. ...[A] licensed physician, nurse practitioner, or physician assistant must always, at a minimum: (i) confer with the patient and/or the patient's health care agent or surrogate about the patient's diagnosis, prognosis, goals for care, treatment preferences, and consent by the appropriate decision-maker, and (ii) sign the orders derived from that discussion.
...MOLST form is the only authorized form in New York State for documenting both nonhospital DNR and DNI orders
https://www.health.ny.gov/professionals ... hts/molst/
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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circular wrote: Sat Sep 14, 2019 7:45 pm
karelena wrote:The Danish are in Denmark, not Holland/Netherlands where the Dutch live. Denmark is considered one of the happiest countries in the world. I don't think they are killing people with dementia and mental illness.
At the same time, I had a friend from Denmark whose grandfather had Alzheimer’s, but the ‘system’ wouldn’t take him in because he was too expensive. He was wandering naked in the snow. They must have provided some care to him, but according to the family it wasn’t nearly what he needed.
This is the farthest thing from my personal experience in Denmark, a generous social welfare state that cares for its citizens from birth to the end. My mother with AD was cared for to the fullest from her diagnosis until her death over six years, and I am beyond grateful for everything the doctors, nurses, assisted living, and help they gave us. I might add that the state paid for it all. I can't imagine a better support system.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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Yes, I woulmind living through mild dementia, but the moment I can't recognise family or require full time care, I'd like to check out. Sadly, by then many health care systems don't allow euthanasia of incoherent people, regardless of advanced directives. Hoping that progress will be made so that people could ride into moderate dementia without fear of getting stuck or burdening their family.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

Post by JD2020 »

SarahB wrote: Sun May 28, 2023 7:44 pm Yes, I woulmind living through mild dementia, but the moment I can't recognise family or require full time care, I'd like to check out. Sadly, by then many health care systems don't allow euthanasia of incoherent people, regardless of advanced directives. Hoping that progress will be made so that people could ride into moderate dementia without fear of getting stuck or burdening their family.
I hear you, theoretically. But just based upon what I've seen in the person in my family with dementia, the person's wishes change. When healthy or even dealing with mild dementia, she would talk about "ending it all" when the dementia becomes more of a challenge. But now, she does not feel that way. If someone were to explain how ill she is and then ask her if she wants to commit suicide, she would say no, of course not. Surely she is entitled to have her wishes respected, as she is now.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

Post by Tincup »

JD2020 wrote: Tue May 30, 2023 12:43 pm I hear you, theoretically. But just based upon what I've seen in the person in my family with dementia, the person's wishes change. When healthy or even dealing with mild dementia, she would talk about "ending it all" when the dementia becomes more of a challenge. But now, she does not feel that way. If someone were to explain how ill she is and then ask her if she wants to commit suicide, she would say no, of course not. Surely she is entitled to have her wishes respected, as she is now.
Having been through this a number of times, I've seen what you describe. I think one of the things that happens is a lack of awareness of the burden for the caretakers as dementia progresses. Personally, I have no desire to create this burden for my family.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

Post by JD2020 »

Tincup wrote: Wed May 31, 2023 6:34 am Personally, I have no desire to create this burden for my family.
I completely understand and I feel the same. I don't know what the answer is. But how can we ignore the wishes of the person who now exists, even if that person used to feel differently?
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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JD2020 wrote: Wed May 31, 2023 11:44 am
Tincup wrote: Wed May 31, 2023 6:34 am Personally, I have no desire to create this burden for my family.
I completely understand and I feel the same. I don't know what the answer is. But how can we ignore the wishes of the person who now exists, even if that person used to feel differently?
In my limited experience (ADx2), the burden can be huge before the more advanced stage, when/if the person is trying to live independently and learn new things even though they can't, constantly calling for help with this and that because they're taking on more than they're capable of and some friends are naively encouraging them to do so because they "don't notice anything" and think it might be good for them (as opposed to asking the caregiver what's going on behind the scenes and what kind of activities would be truly helpful and the easiest to assimilate while maintaining quality of life). I'm afraid there will be more and more of this going on because of the latest take that "it's not my grandmother's Alzheimer's."
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

Post by NF52 »

circular wrote: Wed May 31, 2023 6:59 pm In my limited experience (ADx2), the burden can be huge before the more advanced stage, when/if the person is trying to live independently and learn new things even though they can't, constantly calling for help with this and that because they're taking on more than they're capable of and some friends are naively encouraging them to do so because they "don't notice anything" and think it might be good for them (as opposed to asking the caregiver what's going on behind the scenes and what kind of activities would be truly helpful and the easiest to assimilate while maintaining quality of life). I'm afraid there will be more and more of this going on because of the latest take that "it's not my grandmother's Alzheimer's."
Hi circular,

I'm curious if the two people you knew (and were probably the care partner called at all hours) knew and had shared their diagnosis in the mild/moderate stage. In my experience (3x) when the diagnosis was delayed well into the moderate stage, is when the family chose to believe all was well, in spite of every evidence it was not, and person was confused, easily manipulated, and ultimately experienced more distress.

When I use the phrase "it's not my grandmother's AD", I mean it two ways: probably 30-50% of those in the past we say had Alzheimer's, had something more insidious: mixed dementia with vascular, AD, inflammation, effects of limited education, TBI, smoking, diabetes, toxins in air and water.
The second way it is not our grandmother's AD is that we need to banish the picture that I have (and others may have a similar one) of my 93 year old grandmother, still reading US News and World Report but with little memory, spending most of her day in bed, while others sat mutely in wheelchairs in the hall of her nursing home. (She died of colon cancer, not the effects of salmonella-induced dementia.) We need to seek a diagnosis early so those who "want to help" can learn that people can "Live with Alzheimer's" , not "Suffer from Alzheimer's" or simply withdraw from the world and wait to die from AD> Not learning how to play bridge; maybe having. weekly bingo game with an old friend.

I have been impressed by meeting about half a dozen individuals with MCI/Mild AD in the last few years (virtually and in-person) who sought a diagnosis due to changes in memory or planning, organizing, and conversational skills (what clinicians call "Subjective Cognitive Decline") None was happy about the diagnosis (crying is more likely the immediate reaction), they all decided to be open about it with most or all of their family and friends, and to seek out support groups, exercise (one is already the pickle ball champion of his summer home rec group), decide on what they could do (ex. travel as a couple, have young grandchildren over for visits, join senior center classes as their local college, with explanations about needed modifications, continue owning a business with a spouse or partner providing support) and could not do, e.g. drive long distances, manage medications without some assistance, etc.

Especially with "disease-modifying treatments" that may extend the MCI/Mild AD stage for years (7 and counting for a man I know on aducunumab since 2017), a diagnosis and frank discussions about values, preferences and needs is something that may make life easier for those. living with AD and they care partners and loved ones.

Nancy
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

Post by SarahB »

circular wrote: Wed May 31, 2023 6:59 pm
JD2020 wrote: Wed May 31, 2023 11:44 am
Tincup wrote: Wed May 31, 2023 6:34 am Personally, I have no desire to create this burden for my family.
I completely understand and I feel the same. I don't know what the answer is. But how can we ignore the wishes of the person who now exists, even if that person used to feel differently?
In my limited experience (ADx2), the burden can be huge before the more advanced stage, when/if the person is trying to live independently and learn new things even though they can't, constantly calling for help"
Yes, my mother's battles with her computer printer almost killed my sister.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

Post by circular »

NF52 wrote: Thu Jun 01, 2023 12:09 pm
circular wrote: Wed May 31, 2023 6:59 pm In my limited experience (ADx2), the burden can be huge before the more advanced stage, when/if the person is trying to live independently and learn new things even though they can't, constantly calling for help with this and that because they're taking on more than they're capable of and some friends are naively encouraging them to do so because they "don't notice anything" and think it might be good for them (as opposed to asking the caregiver what's going on behind the scenes and what kind of activities would be truly helpful and the easiest to assimilate while maintaining quality of life). I'm afraid there will be more and more of this going on because of the latest take that "it's not my grandmother's Alzheimer's."
Hi circular,

I'm curious if the two people you knew (and were probably the care partner called at all hours) knew and had shared their diagnosis in the mild/moderate stage. In my experience (3x) when the diagnosis was delayed well into the moderate stage, is when the family chose to believe all was well, in spite of every evidence it was not, and person was confused, easily manipulated, and ultimately experienced more distress.

When I use the phrase "it's not my grandmother's AD", I mean it two ways: probably 30-50% of those in the past we say had Alzheimer's, had something more insidious: mixed dementia with vascular, AD, inflammation, effects of limited education, TBI, smoking, diabetes, toxins in air and water.
The second way it is not our grandmother's AD is that we need to banish the picture that I have (and others may have a similar one) of my 93 year old grandmother, still reading US News and World Report but with little memory, spending most of her day in bed, while others sat mutely in wheelchairs in the hall of her nursing home. (She died of colon cancer, not the effects of salmonella-induced dementia.) We need to seek a diagnosis early so those who "want to help" can learn that people can "Live with Alzheimer's" , not "Suffer from Alzheimer's" or simply withdraw from the world and wait to die from AD> Not learning how to play bridge; maybe having. weekly bingo game with an old friend…

Nancy
Hi Nancy,

The people I'm referring to were diagnosed with "mild cognitive impairment." I don't know how the neuropsychologists decide that, but in my limited experience, the published descriptions of MCI did not match the level of impairment these people already had. At these two MCI stages my life was completely taken over compesating for their deficits all while everyone helped make their lives and mine even more complicated by encouraging them to do all they could.

This disconnect between the professional opinions and the on-the-ground realities I've encountered, coupled with encouragement to live what in effect are overloaded lives given the circumstances, makes me angry. What happened to enjoying a few simple things in life and being satisfied that we're alive at all, soaking up the profound blessings that fill uncomplicated moments of time? Very few people are asking (I mean in the world at large) how impaired the caregivers' own lives are. To be fair, that is a different topic :D

And don't get me going about doctors who use the MMSE and if it's normal or a pretty good score, tell their patient they're fine without sending them for what has a good chance of being an inadequate diagnoses after thorough neurological/neuropsychological evaluation. My anger comes not because it's complicated and never a perfect process, but I don't understand the apparent pattern of disconnects between their high paid world and the usually not paid world of caregivers taking the brunt of the their inadequate diagnoses. I've heard the same experience from others and know I'm not the only one, but I can't say what the statistics would be.

Naturally I don't mean not to support patients with an MCI or Alzheimer's dx to continue to do what they can do safely, but just to say that what sounds simple often plays out in a much more complicated way when you consider the wide variety of circumstances, personalities, etc. involved.

I think the reframing could be that the person is not diagnosed with MCI or Alzheimer's, a family is, and then come up with a plan for the family, and the patient should be ready to give up some things they might not want to in the process, even if they can still do them (!).

Incidentally, when I mentioned the "not my grandmother's Alzheimer's," I was referring to a new book that I think has that title. I didn't know you'd used that phrase but appreciated your take on it. I appreciate all your thoughtful posts!
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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