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 "Deciding to Die, Then Shown the Door" 
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: "Deciding to Die, Then Shown the Door"
Kate-
I'm sure you're right, if the time comes that I'm not able to take care of my mom at home it's definitely something I need to check. thanks
Ellen

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


Fri Aug 26, 2011 5:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
Isn't that amazing that a person's choice to end their life through not eating or drinking wouldn't be OK, but medical intervention wouldn't be considered "interfering with God's plan"? Who comes up with these ideas, anyway? OK, I better shut up because we aren't supposed to be discussing religion on here, but this stuff makes my blood boil! Lynn

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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 8:05 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "Deciding to Die, Then Shown the Door"
Especially since, technically, one can be kept 'alive' on life support--purely artificially--almost indefinitely [well, for a very long time, anyway]. Makes me think of 'Coma', the Robin Cook novel [and movie] about a hospital keeping bodies 'alive' in order to harvest their organs. People used to die naturally in their beds at home. I'm sure God never objected to that. :P

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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.


Last edited by mockturtle on Fri Aug 26, 2011 8:14 pm, edited 1 time in total.



Fri Aug 26, 2011 8:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
Pat, you said it so well. Letting nature take its course and the free will of a person is apparently not ok, but high tech medical intervention is. That's just dandy, huh? Lynn

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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 8:14 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: "Deciding to Die, Then Shown the Door"
I don't know, Lynn, it seems to me that religion comes up often enough on this forum that you, too, are entitled to speak your mind in that regard.

After reading the Providence literature, I can only say, if this is an accurate depiction, please remind me to stay the heck out of Catholic hospitals! I see a lot of disturbing double-talk. I don't believe they are honestly in favor of genuine patient self-will. For instance this quote:

"Although health care in the Catholic tradition cannot honor advance directives whose intended purpose is to intentionally hasten death or end life, the ERDs respect advance directives."

One thing I do for a living is talk with people about their end-of-life wishes and work to write advanced directives that are clear and effective in implementing them. But, if one of my poor clients ends up in a Catholic hospital like Providence, it looks like a lot of our work may be for naught if the Catholic health care provider decides my client's directive "intentionally hasten[s] death or end[s] life." And that is apparently in the hospital's discretion.

However, they claim to "respect advance directives." Apparently they only respect the ones that don't go against their own beliefs and intentions. I guess the unfortunate patient should be prepared to suffer as long as Catholic health care providers decide they should. Wow. How scary is that?

It seems to me that, in general (Providence and its ilk notwithstanding), medical institutions are slowly becoming more sensitive to these issues, but as CGs we have a heavy burden to police what is being done to (as opposed to for) our LOs and be prepared to defend the wishes they have expressed to us. Anyone who tries to prolong my mother's life against her expressed wishes is in for a fight.

Julianne


Fri Aug 26, 2011 8:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
I certainly had to fight to have my dad's wishes respected, and that was because of the philosophy of a CNP who seemed to yield ultimate power over my dad's AD and his expressed wishes. The director at his ALF respected his wishes and tried to implement what he wanted, but the CNP kept him on some meds that we asked be d/cd and then threatened to sue my sister and me! So, this can be a real fight on many fronts. Luckily we were not dealing with a large hospital or ALF policies, but it was still a battle. Who appointed these people to make decisions for others? Lynn

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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 9:12 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: "Deciding to Die, Then Shown the Door"
As awful as I think it is to try to force someone to wait, perhaps through many years of suffering, for a "natural death" - especially if those years of suffering are brought about by artificial means, I do still believe that it is wrong to expect people or organizations to do something that is outside of the permissible actions of their faith. If an ALF or SNF or even hospital is founded and funded by a faith that considers VSED or any other method of hastening death to be contrary to the beliefs of that faith, I believe they have the right to refuse to take part in it, even if all they are asked to do is to cooperate with the decision the resident has made. If we refuse this them this right, we are requiring them to do something they consider a sin. And I do believe that requiring someone to participate in something that is a sin in the eyes of their faith is an even bigger sin

I knew we were moving Mom into a Catholic facility. Even if I hadn't thought about it, the crucifix above the bed should have given me a clue. And I am well aware of how the Catholic Church views taking one's own death into one's own hands. To the Church, this is suicide, plain and simple, and a very serious sin (if there are degrees of sin). I am grateful that the Catholic Church has provided this facility and the compassionate care we find there. And there is no way that I am going to expect them to assist or condone an act that is completely unacceptable within their faith.

That said, there is nothing forcing me to keep Mom there, should she ever reach the point at which this decision needs to be made. I don't think it's going to happen in the near future, but I will research assistance for hospice at home or a facility that would condone and assist with this act.

I've learned from this thread that one should investigate how a facility they are considering would handle even the most drastic measures that a resident might request BEFORE moving into the facility. And, in the case of a religious facility, be sure that one's own beliefs and requirements would be possible for that facility to accept without betraying the tenets of that religion.

I would not serve pork to someone who is Jewish, nor beef to a Hindu. And I would not ask a Muslim to go out drinking with me. If I can respect these faiths that are different from mine in something that is easy to accommodate, how can I knowingly ask a Catholic person or establishment to accept an action that is so completely unacceptable to their faith?

As I said, this is something I should have checked before Mom moved into the SNF. She is getting to a level of comfort there and I know that any move would be very disturbing for her. I just need to have a plan for when, or if, this issue becomes important to her or us.

This is such a difficult subject, but I'm so glad it came up. Thank you again, Robin.

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 11:53 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 guess it all depends on what we believe is the most ultimately important issue, and yes, Kate, knowing these important issues is very important to know ahead of time. My dad wasn't in a church-related facility, but I'd be willing to bet that his CNP was way more influenced by her philosophy, religion, whatever you may call it than she should have been and shoved it down our throats against my dad's wishes. What her beliefs were, were way more important to her than stopping medical intervention (meds in this particular case).
And, we had no other choice for his care in this rural community. We were stuck with a medical person whose beliefs trumped anyone else's beliefs, including the patient and his family. I'm not a person who believes in the concept of sin, but if I did, what she did was the biggest "sin". No one has the right to decide what is right against someone else's will in this type of situation in my opinion.
What are we supposed to do - interview doctors, or in this case CNPs, to find out what their beliefs are and how they will or won't act on those? If your LO is in a community where there are choices, this may make sense to do. /But in a small community where a person in a facility has NO other choice for medical care, we are stuck with the whims of the people "in charge." Unconscionable! Lynn

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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.


Sat Aug 27, 2011 8:37 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"
The American Hospital Association Patient's Bill of Rights http://www.patienttalk.info/AHA-Patient_Bill_of_Rights.htm includes this point:

The patient has the right to have an advance directive (such as a living will, health care proxy, or durable power of attorney for health care) concerning treatment or designating a surrogate decision maker with the expectation that the hospital will honor the intent of that directive to the extent permitted by law and hospital policy.

Health care institutions must advise patients of their rights under state law and hospital policy to make informed medical choices, ask if the patient has an advance directive, and include that information in patient records. The patient has the right to timely information about hospital policy that may limit its ability to implement fully a legally valid advance directive.
[ephasis mine]

When admitting a LO to the hospital we aren't likely to read all the handouts they give us or ask the pertinent questions. Chances are, we are under stress in an emergency situation. We should ask our local hospitals beforehand what their policies are regarding specific issues like stopping medication, stopping or refusing to implement artificial feedings, etc. Go as high as necessary up the chain of command and don't settle for ambiguous 'mission statements'.

_________________
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.


Sat Aug 27, 2011 10:13 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: "Deciding to Die, Then Shown the Door"
Great info. Pat. Thanks for posting. I should check out our local hospital's policy before anyone actually needs it. 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.


Sat Aug 27, 2011 10:49 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: "Deciding to Die, Then Shown the Door"
Lynn,

What that CNP did to your father was wrong. If, in her beliefs, she couldn't conform to the plan for his care, she should have excused herself from his care and another CNP or the doctor she worked for should have taken her place. That she had remained and bullied everyone was absolutely wrong. But, if she were acting on her religious beliefs, I wouldn't have insisted she act in opposition to them, but I would have expected her to step aside. To do otherwise was unprofessional and cruel.

Don't ever doubt that I know you did the best in a very difficult situation. You know what they say about hindsight.

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]


Mon Aug 29, 2011 9:03 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"
I asked that this CNP be removed from being my dad's primary medical person. Her boss, also a CNP and owner of the business would not allow it. That would mean she would again be my dad's CNP and it was a small practice. She was "too busy" to keep seeing patients at the ALF, so her new employee was assigned the job. Together they were quite a pair!
This person should certainly have removed herself because she obviously had her agenda, which was much more important to her than my dad's DNR, AD and verbal instructions. She would not do it. IMHO, she doesn't belong in health care making decisions about people against their will. Maybe she should go work in one of those places where they'd do all medical interventions possible no matter how horrible the quality of life is for the patient. She'd be right at home there!
If this was about her religious beliefs and there was no one else we could get medical care from, then what? By the time this got REALLY bad, my dad was so fragile it would have been nearly impossible to move him, so we were between the proverbial rock and a hard place. I think her responsibility, no matter what her religion is or isn't, is to honor her patients' wishes.
Anyway, it's over, it's done, but I hope that none of you ever ends up in the heart breaking situation we were in where we had to fight with the medical folks while all the time trying to take care of our dying dad the best we could. Hindsight, I would have moved him against his will a year early to be near me and my family. 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.


Mon Aug 29, 2011 9:43 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: "Deciding to Die, Then Shown the Door"
Every state has a nursing home ombudsman just because this is such a vulnerable population. This link goes to a site that gives link for each state.

http://volfangary.tripod.com/ombudsman.html


Tue Aug 30, 2011 12:57 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "Deciding to Die, Then Shown the Door"
Assisted Living Facilities often do have ombudsmen, as well, but I think they are different from those who cover the SNFs.

_________________
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.


Tue Aug 30, 2011 9:52 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: "Deciding to Die, Then Shown the Door"
In our state, the ombuds cover both ALFs and SNFs.


Tue Aug 30, 2011 10:12 am
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