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Old 10-30-2018, 10:29 AM   #61
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Midpack...I'm glad your Dad did not have to suffer longer. My great condolences

perhaps when you & your sister are ready a formal complaint with the care team would help another family
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Old 10-30-2018, 10:58 AM   #62
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A good friend of ours was a staff doctor at a local hospital, a teaching hospital attached to the University. She was a professor there. She had polio and her directives for end of life care were very clear and well known to the hospital, after all she worked there and was well known. The polio finally got to her, she was hospitalized and coded. Her husband came into her room and the staff was beating on her chest, giving CPR. He went ballistic, had to pull everyone off of his wife. She died, which is what she wanted to happen in this situation.

Bottom line - advanced care directives are worthless unless a family member is there. Everyone ignores them.
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Old 10-30-2018, 11:25 AM   #63
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Bottom line - advanced care directives are worthless unless a family member is there. Everyone ignores them.
When my mother was receiving in-home hospice care, they made very sure that the whole family knew NOT to call 911 if anything happened to her.

The fear was, the EMT's and doctors would ignore the DNR and any other directive, and do everything they could to prolong her life. Instead, we were to call hospice, and they'd send over a nurse to do what they could to make her comfortable.

As it turned out she passed in her sleep, so we didn't have to deal with that problem.
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Old 10-30-2018, 11:43 AM   #64
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A good friend of ours was a staff doctor at a local hospital, a teaching hospital attached to the University. She was a professor there. She had polio and her directives for end of life care were very clear and well known to the hospital, after all she worked there and was well known. The polio finally got to her, she was hospitalized and coded. Her husband came into her room and the staff was beating on her chest, giving CPR. He went ballistic, had to pull everyone off of his wife. She died, which is what she wanted to happen in this situation.

Bottom line - advanced care directives are worthless unless a family member is there. Everyone ignores them.
Going to the hospital for someone already enrolled in Hospice...is often problematic. As your friend found out, all sorts of things can go wrong.

We did have some confusion (a tiny fraction of what the OP experienced) between the facility doctor & Hospice while my loved one was in a nursing home, but we then moved them over to assisted living near me (5 minutes away) & are using Hospice as their "doctor."

We are also very fortunate in that the Hospice we're now using has an inpatient residential facility.

Mostly for respite care for those who have their loved one at home, but also for those loved ones nearing death whose symptoms cannot be controlled in an outpatient facility.

Condolences to the OP on their loss...I'm so sorry for what they had to go through.
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Old 10-30-2018, 11:44 AM   #65
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advanced care directives are worthless unless a family member is there. Everyone ignores them.
As I said earlier, it all depends.

My mom had her advance directive filed with the local hospital and all her doctors.

When the staff at the memory care facility where she lived found her unresponsive, they called 911out of habit. I got a call from them at the same time, and rushed to the ER. I found the doctor in charge of the ER and identified myself. The first thing he said to me was "I see that she has a DNR on file, so we'll just make sure she's comfortable unless you want us to do more." I could have hugged him.
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Old 10-30-2018, 11:44 AM   #66
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When my mother was receiving in-home hospice care, they made very sure that the whole family knew NOT to call 911 if anything happened to her.

The fear was, the EMT's and doctors would ignore the DNR and any other directive, and do everything they could to prolong her life. Instead, we were to call hospice, and they'd send over a nurse to do what they could to make her comfortable.

As it turned out she passed in her sleep, so we didn't have to deal with that problem.
It's not a fear; in many states, if the EMTs arrive they are REQUIRED to administer CPR and take any other life saving procedures. THAT is why in home hospice providers tell providers to NOT call 911. While Dad was in hospice, I only had to call them once (while still alive) to get some meds expedited. When he did finally pass, I called them and they asked how long we would like before they came over and called the funeral home. It was a very peaceful way to say goodbye to Dad...no emergency personnel or chaos.

Midpack, I am sorry for your loss, but I am glad the suffering finally came to an end.
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Old 10-30-2018, 12:55 PM   #67
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I'm also very sorry for your loss, Midpack, and for the needless suffering your dad and your family had to endure.

Here in Washington, which is a Death With Dignity state, we were advised to have mom fill out a POLST (Physicians Orders for Life Sustaining Treatment) to supplement her advanced directive. The POLST puts the wishes of the patient into specific medical language that makes it easier for caregivers to comply without worrying about lawsuits after the fact. Mom's was bright green, and we all had copies of it in addition to the one that hung on her fridge. Emergency staff in Seattle know to look there for it, especially in care facilities (facility management also knew she had one and had a copy in her file).


Here is a link to the organization promoting this tool -- strongly recommend everyone look into whether or not it is being used in your state, and follow up appropriately:

POLST – Honoring the wishes of those with serious illness and frailty.
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Old 10-30-2018, 03:25 PM   #68
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A good friend of ours was a staff doctor at a local hospital, a teaching hospital attached to the University. She was a professor there. She had polio and her directives for end of life care were very clear and well known to the hospital, after all she worked there and was well known. The polio finally got to her, she was hospitalized and coded. Her husband came into her room and the staff was beating on her chest, giving CPR. He went ballistic, had to pull everyone off of his wife. She died, which is what she wanted to happen in this situation.

Bottom line - advanced care directives are worthless unless a family member is there. Everyone ignores them.
Exact same thing happened a friend of mine whose wife was dying in the hospital. We were in the room when she coded. Everyone rushed in to save her, and he had to get between them and his wife and shout that she had a DNR. Absolutely disgusting to watch..
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Old 10-31-2018, 12:12 PM   #69
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MidPack-

Very sorry for your loss, and for the difficult last few months. You’ve convinced me to reevaluate our POAs/MPOAs. I think I’ll also talk to my DS (nurse) to see what she has seen & recommends.
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Old 10-31-2018, 12:55 PM   #70
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Midpack - I am so sorry for your loss, but glad your father is no longer suffering. My thoughts are with your family.


I agree with you regarding death with dignity; my parents live in NH and have living wills and DNR documents. At 80, my mother is not in the best of health and dealing with the early stages of Alzheimer's. I fear my 80-year old father will have to deal with these issues at some point, and although my sister and I will help as much as possible, we don't live close enough to be there every day...
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Old 10-31-2018, 02:39 PM   #71
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He is in hospice now, in a skilled nursing facility. But the hospice folks and the SNF haven’t been on the same page, they just made a colossal week long mistake so bad my Dad was crying because of the pain one morning despite morphine. The medical professionals have done some good things and they have good intentions, but they aren’t coordinating with each other - my sister has caught lots of mistakes, some were avoided but some were after the fact. This morning another new nurse appeared who didn’t know anything about my Dad, my sister had to intervene - and he and Medicare/Tricare are paying $ for this? My Dad will pass away, helpless, after weeks in pain. Why?

Again, I’m not at all cavalier about death with dignity laws, but there’s no good reason I can think of to put my Dad through this - he is begging for it to end.
After my mom's passing in February, you story is heartbreaking. After my mom ended up in the hospital twice within one week, we started hopsice care. She went back to the memory care unit, where the hospice care was carried out consistently. Her end was mercifully swift, and largely painless, also after she stopped eating and drinking, largely. So sorry for the pain and for your loss.
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Old 11-06-2018, 06:19 PM   #72
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Before getting too enthusiastic about the helpfulness of euthanasia, look at what has happened in other countries, particularly Holland.

I entirely agree that people at the end of life are often mistreated, prolonging life to make money on tests or killing them to save money. Money being the motivating factor. So is getting rid of Grandma to get an inheritance. Death with dignity should mean dying with care and discretion. Giving someone pain relief even if it hastens death is one thing; deliberately killing them off is another. Be careful what you wish for.
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Old 11-06-2018, 06:31 PM   #73
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Before getting too enthusiastic about the helpfulness of euthanasia, look at what has happened in other countries, particularly Holland.
What has happend in Holland? I've been searching the news, and could not find to what you are referring.
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Old 11-06-2018, 06:33 PM   #74
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What has happend in Holland? I've been searching the news, and could not find to what you are referring.

Holland | Patients Rights Council
Among other things:

'A recent Dutch television documentary on euthanasia in which a 68 year-old woman suffering from semantic dementia was given a lethal injection may well herald a turning point in what many consider to be an increasingly broader — and unacceptable — interpretation of the rules."
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Old 11-06-2018, 07:03 PM   #75
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Before getting too enthusiastic about the helpfulness of euthanasia, look at what has happened in other countries, particularly Holland.

I entirely agree that people at the end of life are often mistreated, prolonging life to make money on tests or killing them to save money. Money being the motivating factor. So is getting rid of Grandma to get an inheritance. Death with dignity should mean dying with care and discretion. Giving someone pain relief even if it hastens death is one thing; deliberately killing them off is another. Be careful what you wish for.
We’ve said from the outset there are risks and undesirable outcomes possible with DWD if not carefully regulated, legally and practically. Family members coercing aged parents. Acting because the elderly patient can’t afford continued end of life expenses. Elderly patients who are unable to make decisions for themselves. None of these were the factors in my Dad’s case.

On the other hand, the status quo has undesirable outcomes every bit as serious, maybe even more common? Elderly patients who are in considerable pain for days, weeks, months, years. Sadly some resort to suicide. Health care professionals extending life to generate more revenue (I am NOT saying that’s common, but it may happen). Elderly terminal patients with no quality of life who would rather see their estate passed on to family and/or charity instead of medical costs that are just delaying the inevitable. After months of pain, begging doctors and nurses to let him go and losing almost 30 pounds, my Dad had to completely refuse food and water and take morphine every 2 hours to end his pain.

“Careful what you wish for” applies to the status quo as well in my view.

And DWD laws would only be an option, not a recommendation for any other family.

Some of the Holland headlines were hard to assess. X% of deaths due to euthanasia? How many of those were terminal otherwise, who simply didn’t have euthanasia as an option before? Euthanasia isn’t a cause of death for a terminal patient, it’s a choice.
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Old 11-06-2018, 07:04 PM   #76
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Old 11-06-2018, 07:08 PM   #77
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OK. Done.
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Old 11-06-2018, 07:17 PM   #78
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Old 11-06-2018, 07:28 PM   #79
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Before getting too enthusiastic about the helpfulness of euthanasia, look at what has happened in other countries, particularly Holland.

I entirely agree that people at the end of life are often mistreated, prolonging life to make money on tests or killing them to save money. Money being the motivating factor. So is getting rid of Grandma to get an inheritance. Death with dignity should mean dying with care and discretion. Giving someone pain relief even if it hastens death is one thing; deliberately killing them off is another. Be careful what you wish for.

Some people do not want to go through the pain and suffering that will happen at the end.. and some, like my dad, do not want to die in a hospital... it was his fear that he would be bed ridden with tubes and machines keeping him alive....


To me it is the quality of life.... my mom is now 99 and could not tell you what she at for dinner even though it was a couple of hours ago... but when I go visit her she knows the rules for the games we play... she is having medical problems, but she is not in pain... she would never IMO qualify for death with dignity... my dad, who had cancer that broke out all over his body and was in terrible pain and none of the pain relievers worked would... now, he died in 1980 and pain mgmt has improved, but I would still want to honor his wish to not die in a hospital...
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Old 11-06-2018, 08:01 PM   #80
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Some people do not want to go through the pain and suffering that will happen at the end.. and some, like my dad, do not want to die in a hospital... it was his fear that he would be bed ridden with tubes and machines keeping him alive....


To me it is the quality of life.... my mom is now 99 and could not tell you what she at for dinner even though it was a couple of hours ago... but when I go visit her she knows the rules for the games we play... she is having medical problems, but she is not in pain... she would never IMO qualify for death with dignity... my dad, who had cancer that broke out all over his body and was in terrible pain and none of the pain relievers worked would... now, he died in 1980 and pain mgmt has improved, but I would still want to honor his wish to not die in a hospital...
I understand, but his great problem was fear, which can be allayed without killing him. In my dad's case, he had an advanced directive prohibiting "tubes" (probably phrased differently, but that's the effect). As a result, he could not be assisted with an IV giving him hydration that would have made him more comfortable. My mom discussed the situation with us when the doctors could do no more and wanted to go with "terminal sedation". We said no, go with comfort care and we will be with you. She had an IV that kept her hydrated and provided a port for administering pain meds without her having to swallow pills or have an injection. She lived for another few weeks, giving us time to have conversations we never would have had otherwise. She died peacefully one morning with my sister at her side. That is true death with dignity.
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