Who should decide?

toomuchbaloney · Dec 8, 2021

20 minutes ago, subee said:

I am well aware of home care costs - couldn't afford to allow my mother to stay at home. But it's not the costs that is the lesson here. It's in the hope that the parents would come to a different understanding about the quality of her life if they had to do a large chunk of the work themselves instead of depending on the generosity of others, be it the state or the actual caretakers. Maybe when they don't have the time or the energy to put the big barettes on and lay out the baloon, they would get a better grasp of reality.

It's easy to maintain unrealistic expectations for others when you are insulated from the realities associated with the expectations.

amoLucia · Dec 8, 2021

I brought up a comment quite a few posts ago, but the care of Jahi McGrath extended across 2 states (Cali & NJ) and moved from hosp to hosp to home care. Medicaid provider. Case was very news-captivating. Family believed to have own agenda for continuing care. Jahi did die about 2yo. Very sad story.

Lots of AN member opinions, similar to many here.

subee, MSN, CRNA · Dec 8, 2021

5 hours ago, Hannahbanana said:

I wish that were true. Reality has nothing to do c it. Alas, I have seen firsthand how many families keep biological specimens alive for years when the human spirit has long since left the bed. Denial and wishful thinking can have horrific outcomes that are very long in coming.

I totally agree with you. However, that doesn't mean that the patients can't be discharged home with some support. I don't know that we have actually TRIED this, but it needs to be done. Families who make these terrible decisions shouldn't be given a free ride from the pain they inflict on others. I always think how much a bedsore must hurt but the patient has lost all forms of communication and just has to lie on it. They certainly have the ability to experience pain through the autonomic pain pathways even if they can't interpret the pain in frontal lobes that don't exist anymore. Let them go home.

allnurses Guide · Dec 9, 2021

10 hours ago, toomuchbaloney said:

Read Gawande's work on end of life in the USA.

I am going to read his work but at first glance it does not appear to be peer reviewed research. Still seems compelling to look into further.

Kooky Korky, BSN, RN · Dec 11, 2021

Let this little angel go home to God.

subee, MSN, CRNA · Dec 12, 2021

On 12/8/2021 at 12:48 PM, toomuchbaloney said:

It's easy to maintain unrealistic expectations for others when you are insulated from the realities associated with the expectations.

I don't berate these parents. They are the product of a society that denies death as a normal process. We don't even use the worth "death" anymore. Somehow the venacular has moved to "passing on." Passing on to where? This may be a belief of religious people but since it's a recent change in terminology, I'm going to opine that it shows that we have become more pathological in our attemtps to deny the normalcy of death. Doctors and nurses are instrumental in passing on these unrealistic expectation....uh-oh. Just realize I made a bad pun:)

toomuchbaloney · Dec 12, 2021

29 minutes ago, subee said:

I don't berate these parents. They are the product of a society that denies death as a normal process. We don't even use the worth "death" anymore. Somehow the venacular has moved to "passing on." Passing on to where? This may be a belief of religious people but since it's a recent change in terminology, I'm going to opine that it shows that we have become more pathological in our attemtps to deny the normalcy of death. Doctors and nurses are instrumental in passing on these unrealistic expectation....uh-oh. Just realize I made a bad pun:)

Agreed. It would never be appropriate to berate them. They are simply a reflection of our culture as you described so accurately.

Hannahbanana, BSN, MSN · Dec 16, 2021

I have to go back to the idea that a Jahi can be cared for at home. Theoretically possible, given adequate resources. However, I have seen this with my own eyes (and smelled it with my own nose).

This kind of situation takes over the whole household and takes so much attention from the other kids, the marriage, the ability for others to visit and socialize … it’s a different kind of prison. And there’s still that whole suffering-Media / outsourcing caring industry that has to be continuously fed and becomes self-perpetuating ~~ and helps nobody doing the work.

There really are worse things than losing a child. Having indelible memories what’s left of years and years of a “childhood” like this is so much worse than mourning a death, bringing flowers to the cemetery, and getting your family on c life.

subee, MSN, CRNA · Dec 17, 2021

15 hours ago, Hannahbanana said:

I have to go back to the idea that a Jahi can be cared for at home. Theoretically possible, given adequate resources. However, I have seen this with my own eyes (and smelled it with my own nose).

This kind of situation takes over the whole household and takes so much attention from the other kids, the marriage, the ability for others to visit and socialize … it’s a different kind of prison. And there’s still that whole suffering-Media / outsourcing caring industry that has to be continuously fed and becomes self-perpetuating ~~ and helps nobody doing the work.

There really are worse things than losing a child. Having indelible memories what’s left of years and years of a “childhood” like this is so much worse than mourning a death, bringing flowers to the cemetery, and getting your family on c life.

I get what you are saying and I believe that if the parents took her home and even with lots of help, might think differently about what they are doing to their kids and decide to let her go. That, I guess, is called wishful thinking:) I would never expect a family to be able to take care of Jahi or any other dead body at home for very long. You are correct that it can destroy a family. I don't even know if they had other kids at home. That would make a difference for me.

JKL33 · Dec 17, 2021

19 hours ago, Hannahbanana said:

Double post.

JKL33 · Dec 17, 2021

19 hours ago, Hannahbanana said:

There really are worse things than losing a child. Having indelible memories what’s left of years and years of a “childhood” like this is so much worse than mourning a death, bringing flowers to the cemetery, and getting your family on c life.

That illustrates how self-focused people can be. It seems we are talking about situations where people have decided that admitting someone is gone is the worst that could happen to them, therefore it is the worst thing that could happen on the whole.

Hannahbanana, BSN, MSN · Dec 17, 2021

I had to read this twice to get your point-- I'm getting like that lately, LOL-- but I agree with you. I think that since we nurses have seen what's worse than death, when people say "I want everything done" but they have no freaking clue what "everything" really means, we may have a different perspective than people who have likely never seen anybody that sick, much less cared for them for weeks or months or years. They've never seen anybody die, or even a dead body.

In the not that distant past people died at home; the family got to say goodbye and process the deaths as part of the lives that preceded them. In the 17th and 18th century, where families lived in homes without central heating or plumbing, there was a nice warm room behind the central fireplace. This was the borning room, where women labored and gave birth, and also where people near the end of life went. When Uncle Buddy got kicked in the head by the horse, grandma had her stroke, the blue baby finally outgrew his defective heart... people came to sit for awhile, talk, and consider the passing of time. Then there was mourning, the funeral, the trip to the churchyard, and the trip home. Everybody knew that's how it would be for them.

Nowadays, you're right; everybody thinks death is the worst thing. After all, doesn't modern medicine make staving off death the be-all, end-all? Nursing, however, knows better.