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 "Deciding to Die, Then Shown the Door" 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post "Deciding to Die, Then Shown the Door"
This is quite a story about a couple deciding not to eat/drink any more, and then being forced to leave their care facility.


http://newoldage.blogs.nytimes.com/2011 ... -the-door/

The New Old Age: Caring and Coping
Deciding to Die, Then Shown the Door
By Paula Span
August 24, 2011, 1:59 PM
The New York Times


Thu Aug 25, 2011 12:22 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
That is an amazing story. How can anyone try to prolong a life of a person who is old and suffering, or maybe NOT old, but suffering, and force their beliefs on the person who is dying anyway? A person should have more rights to determine when they die than the medical community, or nursing home administrators have to determine it for them. How did our society get so controlled by medicine, insurance companies, corporate policies that when those entities intervene and control our right to die that is considered "right" or "normal"????? But letting nature take its course isn't ok?

I need to check my AD and make sure that there is something in there that says if I am infirm, no chance of getting better, and I choose to stop eating and drinking, there is no one who can intervene and try to keep me "alive." I never want to put my children or myself through the indignities and suffering that my poor father went through.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Aug 25, 2011 9:10 am
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Joined: Mon Feb 14, 2011 10:22 pm
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Location: Portland, Or
Post Re: "Deciding to Die, Then Shown the Door"
This is truly an amazing story, thanks Robin for posting it. I can't believe that the facility would just evict them with no notice. It re-affirms my choice to care for my mom at home until her death. Hopefully with her eight living children and 20 grandchildren, there will be enough of us to help carry out the plan to keep her at home. I know that there are issues that come up that may prevent us from being able to do this, but I am going to give it my best effort. I'm also very grateful to have a good rapport with her PCP and that she has an AD in place. If for some reason she does have to be placed in a SNF, I will definitely discuss this issue ( among others) with them before placement.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Aug 25, 2011 11:13 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: "Deciding to Die, Then Shown the Door"
Wow. And that they would do this to someone in their nineties!
I need to check Mom's AD and mine. We both have "no tube feeding" identified, but I don't think it occurred to us that we would need to worry about this kind of pressure to eat or be kicked out.
I do see the dining companions really pushing some residents at my Mom's SNF to eat. I've often wondered if these residents are trying to die, which would be understandable. I guess it makes sense, though, as the facility is Catholic and the church might see this as suicide.
Which brings me to another question. Is this suicide or simply allowing yourself to die? I wonder about this because of life insurance issues. If your life insurance won't pay out to your beneficiaries in the case of "self inflicted death," is this considered "self-inflicted?" But in this case, the individual is clearly suffering and, in my mind, might just be ceasing life-sustaining practices and allowing death in. And in that case, isn't it a natural death? A dementia patient, left to her own devices, might forget to eat for a couple of weeks. Then, is it suicide or the result of dementia?
As I am really trying to get rid of my split-level townhouse and find a condo or apartment (single level), I could consider bringing Mom there when she gets to a hospice stage. Hmmm. I have a lot of questions to ask of a lot of people.

Thanks for bringing this up, Robin!

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Aug 25, 2011 1:29 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: "Deciding to Die, Then Shown the Door"
Just a quick P.S.

This kind of parallels our experience with my grandmother back in the 1980's. Then, allowing someone to die was a new concept to a lot of hospitals and medical practitioners. This was how my grandmother had 5 amputations. At the time of each amputation, Grandma would beg to be allowed to die. I don't think that even the pain of dying from gangrene would have changed her mind. And each time, the doctors convinced us that it would be horrible to let her die and absolutely necessary to do another amputation. If the first amputation hadn't been done, she would have died at 87. The 5 amputations kept her around until she was 94. Though living that long allowed her to know her great-granddaughter, Grandma was also suffering from dementia and the child could have been anybody's child.
It's an interesting parallel, I think. We're still forcing people to live in situations we know would be miserable.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Aug 25, 2011 1:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
I can't imagine forcing an elderly dementia patient to have multiple amputations. How can anyone justify that? To me it's at least unethical and morally reprehensible, and ought to be illegal. How awful for your poor grandmother. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Aug 25, 2011 1:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: "Deciding to Die, Then Shown the Door"
A woman at Derek's SNF is trapped in her body and her eyes just plead--please, please let me go. She had signed her advanced directives [no DNR] but, when she coded, her son called the paramedics and had them perform CPR and there she is---stuck, with tube feedings, suctioning about every fifteen minutes, unable to move, talk, eat. While I know we cannot judge someone else's quality of life, I would daresay this woman has none. She wants to die but her son--who does have POA--won't allow it. :cry:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Aug 25, 2011 2:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
That is just horrible Pat. I remember the mom of a friend of mine with ALS, paralyzed from the lower lip down. All she could do was move her eyelids and when I saw her she looked like she was trying to communicate with her daughter. I always wondered if she was trying to ask not to be fed with a turkey baster any more. What cruel and unusual punishment. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Aug 25, 2011 3:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
That is just horrible Pat. I remember the mom of a friend of mine with ALS, paralyzed from the lower lip down. All she could do was move her eyelids and when I saw her she looked like she was trying to communicate with her daughter. I always wondered if she was trying to ask not to be fed with a turkey baster any more. What cruel and unusual punishment. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Aug 25, 2011 3:03 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: "Deciding to Die, Then Shown the Door"
I asked the Assoc. Dir of Nursing for Mom's unit to read the article and let me know what the facility would do in this situation. Here's her response:

"Thank you for the article. You’re right – it is very interesting. Our facility has a Palliative Case Review team (comprised of current and retired hospice physicians, current practicing geriatricians, social services, administration, nurses, and Pastoral Care) and we’ve had similar discussions. Our facility would support this decision if that is what was decided by the family and/or resident. We know some staff struggle with decisions like this and would provide educational materials and support."

I'm glad I asked. It could easily be a touchy subject among facilities supported by religious groups. She goes on to say that the article will be an agenda item for their September Palliative Care Review committee. I wish I could be a fly on the wall for that discussion!

I'd encourage anyone with a question about this situation to send the article (or just link so that they can get the citation information) to administrators at the ALF or SNF that their LO is living in.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Aug 26, 2011 8:46 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
Great idea Kate. Although my dad is no longer alive, I am going to send this to the ALF where he lived. I know some of his CGs have a hard time with this, since I kept telling them to please not force-feed him when he didn't want to eat, and they'd keep force-feeding him when I wasn't around.
I am also going to send it to the support group I used to attend. I think it's a very important discussion to have with family members, facilities, medical people, etc. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Aug 26, 2011 11:01 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: "Deciding to Die, Then Shown the Door"
Providence Medical Center, which owns all of the hospitals within an 80-miles radius of my home, has the following policy which, if I read it correctly, sounds a little uncertain as to whether they would allow you to forgo or discontinue nutrition and hydration. If any of you want to read the whole policy I'd like to know what you think:
http://www.providence-health.org/body.cfm?id=49
The hospital mentioned in the address is not ours but I assume the policy applies to all Providence hospitals.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Aug 26, 2011 12:06 pm
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Joined: Mon Feb 14, 2011 10:22 pm
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Location: Portland, Or
Post Re: "Deciding to Die, Then Shown the Door"
Quote:
In principle, there is an obligation to provide medically assisted nutrition and hydration if the benefit, in the patient's best informed judgment, outweighs the burden to the patient or resident. This obligation ceases if certain measures to provide nutrition and hydration may become excessively burdensome and therefore not obligatory in light of their very limited ability to prolong life or provide comfort. (ERD #58)

If I'm reading this correctly, I believe that the patient ( or their med POA), has the right to refuse nutrition.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Fri Aug 26, 2011 1:17 pm
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Location: Minnesota
Post Re: "Deciding to Die, Then Shown the Door"
Boy, Pat, it sure sounds to me like Providence would ask a resident making this decision to leave or would do everything possible to prevent VSED. Statements like "health care in the Catholic tradition cannot honor advance directives whose intended purpose is to intentionally hasten death or end life" and " sacredness of every human life from the moment of conception until natural death" and "Euthanasia (an action or intention to cause death, or physician-assisted dying) is not permitted. (ERD #60)" pretty much indicate that they would have a problem with VSED. I sent a copy of the information to the AD Nursing at Mom's facility to see if this changes anything.

Any way you slice it, VSED (voluntary stopping eating and drinking) is a conscious decision to intentionally end life. As my understanding the Catholic religion is, ending a life is God's decision, not the person's. I don't agree with this, but I honor the right of a Catholic facility to act within the directives of their spiritual leaders - just as I expect them to honor my beliefs. But honoring my beliefs doesn't mean that they have to participate in them. If Mom made a decision for VSED, or when things get so bad that we make that decision for her, and if the facility couldn't willingly support it, I would move Mom to another setting - even if it meant her moving back in with me.

I wish I'd thought to ask these questions when we were deciding on a facility. And I'm glad this has come up now and that I am able to bring it to the attention of the administration and ask questions now.

Robin - thank you for bringing this up. It never really occurred to me that I should have checked into how a religious establishment would handle something like this.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Aug 26, 2011 1:22 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: "Deciding to Die, Then Shown the Door"
Ellen,

To me, phrases like "medically assisted nutrition" and "certain measures to provide nutrition" sound like they are talking about tube feeding, not VSED. Pat's right. It's pretty ambiguous. But I believe that they are being careful with words here, and are allowing themselves to refuse to support VSED.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Aug 26, 2011 1:30 pm
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