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

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

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I want to clarify my last post. If I get Alzheimer’s some day and I am in the stage of moderate dementia (I’ve read it’s the most difficult stage, but perhaps it depends on the person), I wouldn’t want medical treatment that would prolong my life. For example, if I got pneumonia, I wouldn’t want to be treated with antibiotics. However, I don’t view that as suicide, physician-assisted or otherwise.

But I am reminded of my grandmother who died of vascular dementia, which she had the last 13 years of her life. My father told me that at a certain point in her dementia, she became happy for the first time in her life. She had forgotten her past and was free of whatever it was that had made her an unhappy and unkind person.

One last comment: As my father-in-law was dying in the hospital of a horrible autoimmune disease, his doctors had him on 8 heart medications. Fortunately, his eldest son, who served as his medical power of attorney, had those medications stopped.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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TheBrain wrote: I want to clarify my last post. If I get Alzheimer’s some day and I am in the stage of moderate dementia (I’ve read it’s the most difficult stage, but perhaps it depends on the person), I wouldn’t want medical treatment that would prolong my life. For example, if I got pneumonia, I wouldn’t want to be treated with antibiotics. However, I don’t view that as suicide, physician-assisted or otherwise.
That's a big clarification, and I'm personally glad to hear it :) I think it would be very hard to make a general statement about which stage of dementia, at least Alzheimer's dementia, is hardest or easiest. It depends on so many factors unique to the individual patient: other health issues, their environment, their caretaker(s) etc. ... but maybe there is a trend one way or another. I don't really know for sure.
TheBrain wrote: But I am reminded of my grandmother who died of vascular dementia, which she had the last 13 years of her life. My father told me that at a certain point in her dementia, she became happy for the first time in her life. She had forgotten her past and was free of whatever it was that had made her an unhappy and unkind person.
I have seen this happen too. I think while having plans in place, it's good to keep an open mind and hopefully have someone to be medical POA whom you can trust to make decisions in novel, unexpected scenarios. In reality these decisions often aren't cut as dry as advance directives make them seem, but we need the dementia advance directives as a starting point.
TheBrain wrote: One last comment: As my father-in-law was dying in the hospital of a horrible autoimmune disease, his doctors had him on 8 heart medications. Fortunately, his eldest son, who served as his medical power of attorney, had those medications stopped.
This isn't a direct reply concerning your father-in-law who could have had extenuating circumstances, but I wanted to add that getting hospice involved as early as possible, when possible, can help. The hospice doctor will often reduce the medication load, even while adding useful ones, to suit the palliative care environment. I read an article recently by a hospice director who wanted people to understand that they can get hospice help much sooner than they think and to pursue hospice as soon as possible for the patient's comfort.

A hospice assessment can be done while someone is in the hospital. Many hospitalists, whose orientation is to fix and save, have a way of leading one down a garden path, suggesting next steps that could solve medical problems when they won't. In some cases, it might be helpful to compare a hospice perspective on a patient with the hospitalist's perspective all while the patient is in the hospital, especially before determining where the patient will go next. I know things can unwind fast so this isn't always realistic, or discharge may occur before hospice decisions are made one way or the other.

Come to think of it, I think I will build into my next advance directive that I specifically want hospice care at the earliest possible date (at some point may even be able to specify which hospice), even if it means looking into it several times to no avail until I'm eligible. Maybe at a certain point have hospice assess every three to six months if changes are gradual, but sooner when any significant change occurs.
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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:
TheBrain wrote: One last comment: As my father-in-law was dying in the hospital of a horrible autoimmune disease, his doctors had him on 8 heart medications. Fortunately, his eldest son, who served as his medical power of attorney, had those medications stopped.
This isn't a direct reply concerning your father-in-law who could have had extenuating circumstances, but I wanted to add that getting hospice involved as early as possible, when possible, can help. The hospice doctor will often reduce the medication load, even while adding useful ones, to suit the palliative care environment. I read an article recently by a hospice director who wanted people to understand that they can get hospice help much sooner than they think and to pursue hospice as soon as possible for the patient's comfort.

A hospice assessment can be done while someone is in the hospital. Many hospitalists, whose orientation is to fix and save, have a way of leading one down a garden path, suggesting next steps that could solve medical problems when they won't. In some cases, it might be helpful to compare a hospice perspective on a patient with the hospitalist's perspective all while the patient is in the hospital, especially before determining where the patient will go next. I know things can unwind fast so this isn't always realistic, or discharge may occur before hospice decisions are made one way or the other.

Come to think of it, I think I will build into my next advance directive that I specifically want hospice care at the earliest possible date (at some point may even be able to specify which hospice), even if it means looking into it several times to no avail until I'm eligible. Maybe at a certain point have hospice assess every three to six months if changes are gradual, but sooner when any significant change occurs.
Circular, thanks for all of your comments here. Much appreciated. You make excellent points. I gather that being a caregiver puts you in a unique position to have a broad scope of these issues.

I'm quoting your text about hospice because it's new to me. Of course, I've heard of hospice, but I don't know much about it. I think I will also build into my advance directive that I want hospice care at the earliest possible date.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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TheBrain wrote:I didn’t know where to post this story on the forum. Is euthanasia a treatment? I’m horrified by this story.
Circular wrote: this brings up again the critical need for apoe4 and other individuals to include an advance directive for dementia among their important papers.
SarahB wrote: I'm very interested in setting up an advanced direction for assisted suicide at the level of moderate dementia.... but I wouldn't mind flying to a different country, assuming they accept foreigners. I believe that in Washington and Oregon, you need to be a resident and have a short prognosis.
Karelena wrote: I checked, no assisted suicide in Denmark
Currently, no place in the U.S. (there are now 10 jurisdictions) has Medical Aid in Dying (MAID) for anyone who has dementia. In these 10 jurisdictions, you must be 18 years or older, have a terminal illness with a prognosis of six months or less to live, be mentally capable of making your own decisions, and be able to self-ingest the medication. The second and third requirements mean that no one with dementia qualifies.

Switzerland is the only place in the world that has both medical aid in dying available for dementia patients AND which accepts foreign nationals. The two places within Switzerland that provide this choice and self-determination to foreign nationals are Dignitas and LifeCircle. However, there are caveats here as well. You must be mentally able to assent to this procedure, and do it yourself without coercion, along with other certification that you understand what you are doing. In Dignatas, you drink the medication, and at LifeCircle you must be able to turn on an intravenous flow of the medication.

In the next couple of weeks, I will be posting in the Wiki that Circular started on Advanced Directives for dementia. I do volunteer work and presentations for Compassion and Choices, so for now, I will point those interested to this helpful part of their site.

http://compassionandchoices.org/wp-cont ... vision.pdf AND
https://values-tool.compassionandchoices.org/

Also, as Compassion and Choices recommends, it would be best to create several videos long before getting Alzheimer's or other dementia, if you have a familial history of dementia or are concerned about your own genetics with the ApoE4 gene. This way, your advanced directive for dementia will carry much greater weight and immediacy compared with just a signed and witnessed form. The book by Barbara Coombs Lee, CEO and president of C&C that helps you with all these decisions is Finish Strong: Putting YOUR priorities First at Life's End. It is excellent.
4/4. Do something today that your future self will thank you for.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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Indywoman wrote:In the next couple of weeks, I will be posting in the Wiki that Circular started on Advanced Directives for dementia. I do volunteer work and presentations for Compassion and Choices, so for now, I will point those interested to this helpful part of their site.

http://compassionandchoices.org/wp-cont ... vision.pdf AND
https://values-tool.compassionandchoices.org/

Also, as Compassion and Choices recommends, it would be best to create several videos long before getting Alzheimer's or other dementia, if you have a familial history of dementia or are concerned about your own genetics with the ApoE4 gene. This way, your advanced directive for dementia will carry much greater weight and immediacy compared with just a signed and witnessed form. The book by Barbara Coombs Lee, CEO and president of C&C that helps you with all these decisions is Finish Strong: Putting YOUR priorities First at Life's End. It is excellent.
Thank you in advance Indywoman for adding to that Wiki page. I can see your help with it will be very valuable!
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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Indywoman wrote:Currently, no place in the U.S. (there are now 10 jurisdictions) has Medical Aid in Dying (MAID) for anyone who has dementia. In these 10 jurisdictions, you must be 18 years or older, have a terminal illness with a prognosis of six months or less to live, be mentally capable of making your own decisions, and be able to self-ingest the medication. The second and third requirements mean that no one with dementia qualifies..
Thank you for sharing all of this important information. How would stating in an advance directive the preference for no antibiotics during the stage of moderate or advanced dementia if pneumonia is diagnosed factor in? Is predetermined refusal of medical treatment different from MAID?
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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I am a bit unsure about what you are getting at in your first question. In an advance directive you are deciding on your preferences, your line in the sand for when or what kind of medical care and treatment you want or do not want in the future. So, for example, you think ahead to what might happen if you have/will have dementia. However, many other parts of our body will be aging or more susceptible to a host of problems. Pneumonia is a common illness, kidney failure is another, congestive heart failure, etc.

If you have dementia, then you cannot make your own decisions. The default position of many doctors, and hospitals, especially religiously affiliated ones, but others as well is to keep you alive. However, YOU have to figure out what you want in terms of quality of life vs. quantity of days BEFORE you are in that position. You might say in your advance directive that you want no life saving measures and then spell them out, e.g. no antibiotics if you get sick, no flu shot, no dialysis, no ventilator or intubation, etc. Or you tailor it. Give me antibiotics on a trial basis, and if they aren’t working stop them. Give me as much pain medication and sedation as possible to keep me comfortable, even if that means shortening my life.

Advance directives are not in effect until one or more doctors determine you cannot make your own health care decisions. This is why your health care proxy/representative, the person who will speak for you and your wishes is so important. You must speak to them often, and make sure your advance directive is up to date and shared with everyone, including all your family and doctors. It is even more imperative with dementia that you decide ahead of time what you want.

Predetermined refusal of medical treatment is different than medical aid in dying (MAID). In the first case, you are saying that you want no life-prolonging treatments. In medical aid in dying in the states where it is legal (dementia is not covered), the physician makes a prescription available that you will ingest or decide to take. You are in control of your death within that six-month window of MAID. The refusal of medical treatment in one’s advance directive will hasten death, but not let you choose when you die. Conversely, medical aid in dying allows you to control the disease and your time of death before the disease takes you.

Again, the Compassion and Choices website is the gold standard for advance directives, end of life planning, dementia resources and legal documents, etc.
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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Indywoman, thank you for this exceptionally informative post. I see now that I didn’t really understand how an advanced directive could be utilized.I now know 1000% more than I did before!
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Re: Dutch Woman With Dementia Euthanized Against Her Will. The Doctor Was Just Cleared Of Wrongdoing.

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TheBrain wrote:Indywoman, thank you for this exceptionally informative post. I see now that I didn’t really understand how an advanced directive could be utilized.I now know 1000% more than I did before!
Indywoman is a huge help here! I also need to update my paperwork as soon as I can get a chance. I ordered Finish Strong today.

Note Indy saying 'no antibiotics if you get sick'. The antibiotic issues goes beyond pneumonia. We often hear about pneumonia taking Alzheimer's patients near the end, but UTIs, bedsores and other infections are also more likely the closer we get to the end of life and could occur well before pneumonia, naturally depending on the individual's own journey.

I don't know much about it, but I would think that antibiotics for bedsores and other skin infections might be desired for comfort (since a bedsore could last a long time and not necessarily spell oncoming death), while antibiotics for an infection that could quickly become systemic would prolong death and might not be desired. Jeepers, maybe we need to be an expert in antibiotics for different conditions and then specify by condition (!).
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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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: Jeepers, maybe we need to be an expert in antibiotics for different conditions and then specify by condition (!).
Ahh, we are not clairvoyant, so cannot anticipate all the 'what-ifs' that will overtake us. What we can do, is choose doctors who listen to our wishes, who ask us about our goals, and if they seem unwilling or too busy to do this, change doctors. I just did this with the neurologist I was originally assigned, and now have a compassionate, knowledgeable, and inordinately understanding neurologist who listens carefully to what I want should I get AD/dementia, and he reiterates that he will help me in that journey and respect what I want for end of life options.

We can also carefully choose our health care representative/proxy, and make sure s/he is someone who can remain calm, who can doggedly and steadily question doctors in congruence with our wishes, who can continue to press them on less invasive treatments, and who can ask the kinds of questions that you did at the end of your post. "Is this an antibiotic that would bring comfort, or is the purpose or side effect to prolong life?" "Is there another way to bring comfort with bedsores, other than an antibiotic?" " Is there a palliative doctor on staff that I could also talk with about options other than antibiotics?" Practice with that health care representative. Have that person read and discuss Finish Strong along with you!
4/4. Do something today that your future self will thank you for.
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