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Hospice care


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Some interesting discussion that is worthwhile to pull out of the Pancho thread and move to here. 

 

KD made a good point that our end of life care sucks, whether by law (our laws limit certain end of care options) or by ignorance (most people don't understand hospice), or by fear (many are afraid to die and fight to the bitter painful end), or because medical professionals suck at end of life care (many do). 

 

We suck at the process of dying, yet we all see it through. Hospice care is growing in the US, which is great, but it's still not well understood or used. It seems to be a forgotten piece of any health care debate. 

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26 minutes ago, BeginnersMind said:

because medical professionals suck at end of life care (many do). 

 

 

Many in the medical community would rather act in their own best interest than do what's best for the individual in care, but I don't think it's as much of a blanket statement as you say here. If you're truly interested in this topic I suggest reading the book below. Atul Gawande is a surgeon and within the last few years this book has caused a tidal wave of change in regards to how end of life care is viewed and thought about in the medical community.

 

718pVHqUk5L.jpg

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3 minutes ago, McGee Return TD said:

 

Many in the medical community would rather act in their own best interest than do what's best for the individual in care, but I don't think it's as much of a blanket statement as you say here. If you're truly interested in this topic I suggest reading the book below. Atul Gawande is a surgeon and within the last few years this book has caused a tidal wave of change in regards to how end of life care is viewed and thought about in the medical community.

 

718pVHqUk5L.jpg

 

Good book and its significance has been to raise more end of life dialog.

 

Doctors are in a tough position. It's hard when your identity is tied to "keeping people alive" to shift over to "advise hospice" to improve quality, but not necessary quantity, of life. 

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Hospices are a Godsend when dealing with the final days, but ironically are being closed under budget pressures.  

 

Ironic because the law and most in the medical community still seem so opposed to any sensible end of life management that could eliminate people lingering in Hospice for weeks or months.  However, slow progress is being made, starting with statutes in several blue states effective this year.   My sister has testified on behalf of one working its way through the process in CT.

 

Any true conservative or libertarian (or liberal for that matter) should be fully behind the 'death with dignity' movement.

 

3 minutes ago, westside said:

I remember I had to fight the doctor's to put my wife in hospice. Best move I could have made for her (my wife), she passed away a couple days later. They treated her and my family with great respect. 

 

I had one doctor talking to me about 'treatment' four days before my Dad died.  I wanted to say "WTF is wrong with you?  I was afraid he was going to die before my Mother got here this morning!"   They moved him to Hospice the next day.

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34 minutes ago, KD in CA said:

 

Ironic because the law and most in the medical community still seem so opposed to any sensible end of life management that could eliminate people lingering in Hospice for weeks or months.  However, slow progress is being made, starting with statutes in several blue states effective this year.   My sister has testified on behalf of one working its way through the process in CT.

 

Any true conservative or libertarian (or liberal for that matter) should be fully behind the 'death with dignity' movement.

 

 

It’s not political. It’s mostly just ignorance. Not willful FU type ignorance but just people being ill informed. Many people think hospice is where you go to get your death pills. Others think it’s some leper-like ward for the near dead. 

 

It’s just a place filled with experts in end of life care. Most people and families find huge comfort once they opt for it. 

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My father recently passed away on hospice care, 3 months shy of his 101st birthday. It was his fifth time on hospice. At some point he had to just be breaking his own record for being kicked off of it (what they call graduating.) It's my favorite charity.

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1 hour ago, westside said:

I remember I had to fight the doctor's to put my wife in hospice. Best move I could have made for her (my wife), she passed away a couple days later. They treated her and my family with great respect. 

Has been my experience as well both times people close to me have entered hospice care. Both of those instances were in the home, so I cannot speak to hospice faciities based out of the home

 
 
 
1 hour ago, KD in CA said:

 

 

I had one doctor talking to me about 'treatment' four days before my Dad died.  I wanted to say "WTF is wrong with you?  I was afraid he was going to die before my Mother got here this morning!"   They moved him to Hospice the next day.

Little off track, but still humorous. I was with my Mom when her oncologist told her

 

"Gen, all we will look to do now is keep your pain manageable, there is nothing more to be done from a treatment perspective"

Mom was all "Doc, I can handle the pain, I am not getting hooked on those pain pills"

Doc "Gen, this is the end of your days..there is no need to be in pain"

Mom" I am not taking htem, I am not getting hoooked on anything"

 

That was a Friday afternoon, she passed on Monday? We still laugh at that( not her passing obviously)

 

Hospice came Saturday and taught me how to administer the morphine, she prolly still waiting to smack me across the head for disobeying her!

 

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Mentioned elsewhere but my wife does hospice work for the last 20 years (I’m riding her coattails to heaven). Pain management is often the patient’s biggest relief on arrival to hospice or with her team. That helps them get their humanity back in spirit and helps them work on physical therapy for whatever else may be limiting them. 

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There's just no way to prepare for this. John Lennons song "Nobody told me there'd be days like these" come to mind. Just got back from a week with mom and she gets worse every visit, lives a thousand miles away and is way off in the countryside. Was pleasantly surprised when a van showed up to take her away for a few hours of recreation. Rural care is just such an issue. Such long drives and resources are small. She says she won't go to a nursing home until she falls and hurts herself and I'm ok with that. I think taking her out of her home would just kill her. Boy, you really find out a lot about your family when things like this happen. Some people step up, some run for cover. 

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1 hour ago, snafu said:

Hospice workers get none of the glory they deserve -- nor do they seek it, which raises my esteem for them even higher. They are blessings to the ill and their families. 

 

 

amen

 

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We'd likely make a lot of the "end of life" pain for patient and family a little better if we permitted assisted suicide for anyone over the age of 18. If you want to check out, let's do it peacefully, clinically appropriate and not leave a police scene for the family.  

 

We are all ok with not making our pets suffer but when it comes to ourselves, we've got to hang on to life no matter the cost, no matter if you really want to be here or not.

 

We all talk a good game about free will but when it comes to dying, the collective "village" runs in with suicide hotlines, meds, therapy and 100 different ways of trying to talk you out of something you'd like to do to yourself.

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30 minutes ago, dpberr said:

We'd likely make a lot of the "end of life" pain for patient and family a little better if we permitted assisted suicide for anyone over the age of 18. If you want to check out, let's do it peacefully, clinically appropriate and not leave a police scene for the family.  

 

We are all ok with not making our pets suffer but when it comes to ourselves, we've got to hang on to life no matter the cost, no matter if you really want to be here or not.

 

We all talk a good game about free will but when it comes to dying, the collective "village" runs in with suicide hotlines, meds, therapy and 100 different ways of trying to talk you out of something you'd like to do to yourself.

 

it's a topic that should be discussed among those most likely to go next and those that care for them

 

going through it now with golden-aged loved ones, they want me to join in on the discussion but i'm so nihilistic on stuff like this that they might be scared off

 

 

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5 hours ago, plenzmd1 said:

Has been my experience as well both times people close to me have entered hospice care. Both of those instances were in the home, so I cannot speak to hospice faciities based out of the home

Little off track, but still humorous. I was with my Mom when her oncologist told her

 

"Gen, all we will look to do now is keep your pain manageable, there is nothing more to be done from a treatment perspective"

Mom was all "Doc, I can handle the pain, I am not getting hooked on those pain pills"

Doc "Gen, this is the end of your days..there is no need to be in pain"

Mom" I am not taking htem, I am not getting hoooked on anything"

 

That was a Friday afternoon, she passed on Monday? We still laugh at that( not her passing obviously)

 

 

How I differ from your mom.

 

Doc:  Jim all we will look to do now is keep your pain manageable, there is nothing more to be done from a treatment perspective

Jim:  Doc I can handle the pain.  So do I snort, shoot or pop these things?  

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Hospice was a blessing at the end of my Mom's battle with Cancer.  When she decided that if she was going to die she would rather pass away at home than in a hospital, they were always there for her and to help my Dad cope.

 

Near the end the visiting nurse told my Dad the time was near and to bring her boys home so she could say goodbye.   My brother and I both had to book flights back home and I wasn't sure we were going to make it.  The medical professionals told my Dad that it was only a matter of hours before my Mom would die.  The Hospice nurse told my Dad that physically she was ready to pass but spiritually she was not ready to let go until she could say goodbye to her boys

 

We made it home to say our goodbyes.  She couldn't speak but could communicate by gently squeezing our hands.  I remember she had one leg hanging out of bed with her foot on the ground.  When I moved past her and bumped her leg she must have used every ounce of strength left to put that foot right back on the ground.  She even moved her head a little and gave me a "no, don't do that" look.  I mentioned this to my Dad who told me that he had put her leg in bed under the covers a few times but her leg would always pop out.  He  said the Hospice nurse told him that was common and was the dying person's way to stay grounded to this world before they are ready to let go

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7 hours ago, plenzmd1 said:

Has been my experience as well both times people close to me have entered hospice care. Both of those instances were in the home, so I cannot speak to hospice faciities based out of the home

Little off track, but still humorous. I was with my Mom when her oncologist told her

 

"Gen, all we will look to do now is keep your pain manageable, there is nothing more to be done from a treatment perspective"

Mom was all "Doc, I can handle the pain, I am not getting hooked on those pain pills"

Doc "Gen, this is the end of your days..there is no need to be in pain"

Mom" I am not taking htem, I am not getting hoooked on anything"

 

That was a Friday afternoon, she passed on Monday? We still laugh at that( not her passing obviously)

 

Hospice came Saturday and taught me how to administer the morphine, she prolly still waiting to smack me across the head for disobeying her!

 

 

I love that.....she was who she was till the end.  Great story.

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7 hours ago, dpberr said:

We'd likely make a lot of the "end of life" pain for patient and family a little better if we permitted assisted suicide for anyone over the age of 18. If you want to check out, let's do it peacefully, clinically appropriate and not leave a police scene for the family.  

 

We are all ok with not making our pets suffer but when it comes to ourselves, we've got to hang on to life no matter the cost, no matter if you really want to be here or not.

 

We all talk a good game about free will but when it comes to dying, the collective "village" runs in with suicide hotlines, meds, therapy and 100 different ways of trying to talk you out of something you'd like to do to yourself.

 

I think my favorite "end of life" story is my brother-in-law's aunt.  Diagnosed with terminal cancer in her mid-70s, and she thew a party: got all her family and friends together, martinis for everyone, let everybody know she had only a few months and this was her chance to say goodbye.  Then after the party, laid down in bed and gave herself a fatal injection of morphine.  

 

Having seen a few too many people suffer through some ridiculous end-of-life "support," I can respect that.  

7 hours ago, dpberr said:

We'd likely make a lot of the "end of life" pain for patient and family a little better if we permitted assisted suicide for anyone over the age of 18. If you want to check out, let's do it peacefully, clinically appropriate and not leave a police scene for the family.  

 

We are all ok with not making our pets suffer but when it comes to ourselves, we've got to hang on to life no matter the cost, no matter if you really want to be here or not.

 

As a society, we have a really warped view of death.  Even 75 years ago, people understood that it's natural.  Regrettable, but not something that can ultimately be avoided, and avoiding it at all costs is ridiculous.

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  • 3 weeks later...

 Sorry folks. I am drunk and miserable tonight, so yall get to read or ignore my post, but I get to get ***** off my chest without paying a therapist! 

 

This Pancho news hit me hard, not cause he died, shoot we all die. It was the news the night they started him on the morphine drip cause he was agitated and having panic attacks.

 

I have been with both my Mom and my Brother when they get there..and man I can't stop thinking we have to figure out this end of life ***** better. I can still see my Mom, supposedly sedated and waiting to the end, agitated  and embarrassed as all  get all as I had to clean her.....and, my brother, when he was supposedly "sleeping comfortably" and sedated   as fug..getting agitated  as fug when the nurses insisted he had a fever and he did not need covers...and I knew he was cold..and he let us know he was cold...and I had to insist we put covers on him

 

i dunno the answers, I am just very sad tonight..and know we need to do a better job at this stuff..sorry

 

 

 

 

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