I Lied When I Said We Did Everything We Could • Hacker News Board

Re: I Lied When I Said We Did Everything We Could

#21

Post by jrnichols » Sun, Apr 07, 2019, 5:38 PM UTC

et2o wrote: post #2

Wonderful article. This is a not-uncommon situation in end of life care. It's difficult for a family to accept a tragedy like this, a loved young woman dying in the prime of her life from something untreatable. The families often are in almost some sort of denial (understandably, I'm saying that without judgment) and demand that everything be tried, even when it's futile and ends up making the situation worse like in…

> seems to me like it's a cultural thing as well.

This is true. I think that it's also a religious thing as well, and almost Christians. Other religions are more accepting of death, but Christianity has taught many to sincerely believe that Jesus himself would step into the room and heal their loved one, therefore every attempt must be made to save them.

This is something I've seen first hand in my years as a Paramedic. Patients with absolutely zero quality of life, yet remain a full code, in a nursing home. Family hasn't visited them in months (maybe coming 2-3 times a year tops) but there's evidence of a direct deposited social security or retirement check going somewhere. It's sad and I wish that we had a huge cultural shift regarding end of life care.

Re: I Lied When I Said We Did Everything We Could

#22

Post by busterarm » Sun, Apr 07, 2019, 5:40 PM UTC

whatshisface wrote: post #20

busterarm wrote: post #14

Earlier quoted context omitted.

I know some parents who had a child with an extremely rare degenerative disorder that attacks the nervous system. They were wealthy enough to afford extremely good care and as such, kept their poor suffering child "alive" for 12 years longer than anyone else who had ever had the same disease. Life expectancy of newborns with this disorder is about 1-3 years. At every turn, the doctors and nurses charged with the chil…

> There should be laws preventing family members from prolonging the suffering of their loved ones. I can't think of a way to implement a law like that which wouldn't be fraught with horrible problems. Just imagine the misery associated with doctors deciding to "kill people's children," which in fact in some cases would be unjustified. (Nobody can always get it right, not even doctors.)

My entire family is in medicine and I am well aware of this.

However, cases like the one I mentioned are fairly clear cut, in my opinion.

Re: I Lied When I Said We Did Everything We Could

#23

Post by nautilus12 » Sun, Apr 07, 2019, 5:41 PM UTC

Oh man. This type of marketing makes my blood boil. I understand doximity is in the business of preventing situations like this through connecting data systems and I respect that, but are we are at a point in a society that nothing no matter how personal or sacred is fodder for the marketing machine? This is a touching story but in reality...it's sponsored content.

Re: I Lied When I Said We Did Everything We Could

#24

Post by vichu » Sun, Apr 07, 2019, 5:43 PM UTC

I recommend this article for another essay on this topic: https://www.zocalopublicsquare.org/2011/11/30/how-doctors-di...

It really boils down to quality over quantity. After all, I'm sure most would choose to die comfortably in their bed after a week rather than in a few months all while in excruciating pain.

Re: I Lied When I Said We Did Everything We Could

#25

Post by lukeplato » Sun, Apr 07, 2019, 5:45 PM UTC

caprese wrote: post #5

What is "the code" in this context? The article masterfully reveals details slowly over time, but I don't want to lean on my own understanding of what that means.

>"I wanted to tell him that if we had done everything we could she would have gone to the palliative unit or home on hospice."

I'm confused by this part. It almost implies that the code also involved intentionally not saving her

Re: I Lied When I Said We Did Everything We Could

#26

Post by cf498 » Sun, Apr 07, 2019, 5:50 PM UTC

busterarm wrote: post #14

caprese wrote: post #10

Earlier quoted context omitted.

> The families often are in almost some sort of denial It was like pulling teeth to try to get doctors to tell me anything realistic. I don't get the impression that anyone in the medical community is trying to change this. Unlike my other family members, I had seen this person once a month obviously deteriorating in line with what every prognosis and statistic would say. My other family members were there every day…

I know some parents who had a child with an extremely rare degenerative disorder that attacks the nervous system. They were wealthy enough to afford extremely good care and as such, kept their poor suffering child "alive" for 12 years longer than anyone else who had ever had the same disease. Life expectancy of newborns with this disorder is about 1-3 years. At every turn, the doctors and nurses charged with the chil…

It would already a great step if we would stop criminalizing assisted suicide. My grandmother recently passed away from cancer and she luckily suffered only a relative short while after switching from treatment to palliative care. She said from the first day that she only wanted to die quickly and asked the doctors repeatedly to give her something to end her suffering. Her health deteriorated to the point where she couldnt get up anymore and my parents had to find a palliative care facility. Only there was she given proper pain medication, which is horrible in itself, but still had to die slowly.

Its cruel and nothing more. I have little sympathy for the religiously driven pro-torture faction.

Re: I Lied When I Said We Did Everything We Could

#27

Post by TheSpiceIsLife » Sun, Apr 07, 2019, 5:51 PM UTC

whatshisface wrote: post #20

busterarm wrote: post #14

Earlier quoted context omitted.

I know some parents who had a child with an extremely rare degenerative disorder that attacks the nervous system. They were wealthy enough to afford extremely good care and as such, kept their poor suffering child "alive" for 12 years longer than anyone else who had ever had the same disease. Life expectancy of newborns with this disorder is about 1-3 years. At every turn, the doctors and nurses charged with the chil…

> There should be laws preventing family members from prolonging the suffering of their loved ones. I can't think of a way to implement a law like that which wouldn't be fraught with horrible problems. Just imagine the misery associated with doctors deciding to "kill people's children," which in fact in some cases would be unjustified. (Nobody can always get it right, not even doctors.)

That doesn’t mean we can’t explore the idea.

In Australia, and I believe most places with well developed legal systems, you can get in quite a bit of trouble for mistreating an animal.

No so much if you mistreat someone under the auspice of medical or aged care.

Our culture has institutionalised the mistreatment of the terminally ill and frail-aged.

There are good arguments to be made that this should be seen as a problem that should be addressed.

Re: I Lied When I Said We Did Everything We Could

#28

Post by thefifthsetpin » Sun, Apr 07, 2019, 5:54 PM UTC

lukeplato wrote: post #25

caprese wrote: post #5

What is "the code" in this context? The article masterfully reveals details slowly over time, but I don't want to lean on my own understanding of what that means.

>"I wanted to tell him that if we had done everything we could she would have gone to the palliative unit or home on hospice." I'm confused by this part. It almost implies that the code also involved intentionally not saving her

They did all that they could to save her from death, but in the author's opinion that's not what they should have been saving her from.

As an example, they intentionally didn't save her from the agony of receiving CPR.

Re: I Lied When I Said We Did Everything We Could

#29

Post by DoreenMichele » Sun, Apr 07, 2019, 5:55 PM UTC

busterarm wrote: post #14

caprese wrote: post #10

Earlier quoted context omitted.

> The families often are in almost some sort of denial It was like pulling teeth to try to get doctors to tell me anything realistic. I don't get the impression that anyone in the medical community is trying to change this. Unlike my other family members, I had seen this person once a month obviously deteriorating in line with what every prognosis and statistic would say. My other family members were there every day…

I know some parents who had a child with an extremely rare degenerative disorder that attacks the nervous system. They were wealthy enough to afford extremely good care and as such, kept their poor suffering child "alive" for 12 years longer than anyone else who had ever had the same disease. Life expectancy of newborns with this disorder is about 1-3 years. At every turn, the doctors and nurses charged with the chil…

When my dad was in ICU, an elderly woman coded repeatedly for the last probably ten days of her life. My mother spoke about it with disgust. She felt the family wasn't prolonging the woman's life. They were merely torturously dragging out her death because they were not emotionally ready to accept the reality that she was dying and would not be going home again.

(Given that my dad was in his late sixties, I think "elderly woman" as a descriptor from my mother means eighties.)

Re: I Lied When I Said We Did Everything We Could

#30

Post by wl » Sun, Apr 07, 2019, 5:58 PM UTC

caprese wrote: post #5

What is "the code" in this context? The article masterfully reveals details slowly over time, but I don't want to lean on my own understanding of what that means.

"The code" is the attempt to keep the person alive. "Coding" is used as a verb either for performing "the code" or to describe a person dying.