10 ms·

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 i

by et2o 8y ago

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 this case. Medical community has been working on trying to change this for years, but ultimately it seems to me like it's a cultural thing as well.

caprese 8y ago
> 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 and couldn't or weren't willing to see the progression. This isn't a movie with a pleasant ending. The only hope is for the suffering to end, from my perspective, and in hindsight, yes, it was a spot on analysis. With regard to the doctors, now that part was just like in the movies. They hemmed and hawed and made sad empathic expressions, but didn't explain the possibilities at all. They just assume everyone is in a state of stupor, they probably assumed my rapid conclusions were some desensitized state of shock, just as they assumed my other family members clinging to hope was an equally dismissible state of denial.
- busterarm 8y ago
  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 child's care encouraged the parents to end the kid's suffering. The parents were absolutely invested in using all of their resources to give the child "the best care". The last few years of the kid's life were basically vegetative, with frequent interruptions of how a human with an obliterated nervous system manifests pain. I'm sorry if this reads all tragic and horrible, but that's what it is. There should be laws preventing family members from prolonging the suffering of their loved ones.
  - bg4 8y ago
    And what's to prevent insurance companies from exploiting those laws to reduce costs and increase profits?
    - busterarm 8y ago
      As opposed to the doctors, nurses, hospitals, medical supply and pharmaceutical companies who profited for over a decade from the child's care?
    - Retric 8y ago
      As strange as it sounds that's not really how it works. It's a competitive industry. So, an insurance company's profit is based on total healthcare costs. The only way for the industry to make more money is to cover more people, or for healthcare costs to rise. Put another way, if total healthcare spending was 0$, their total profits would be 0$. They can cut internal costs somewhat, but that's about it.
    - mikeash 8y ago
      What prevents it now?
  - whatshisface 8y ago
    >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.)
    - busterarm 8y ago
      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.
    - TheSpiceIsLife 8y ago
- skookumchuck 8y ago
  When my father was dying a few years ago, the doctors and nurses were very pragmatic and rather blunt in their prognosis and the options. They carefully did not make recommendations, but laid out the results of the various options. I appreciated that.
- et2o 8y ago
  Sorry you had a rough time getting information from your doctors. > I don't get the impression that anyone in the medical community is trying to change this. This is, in my experience, completely wrong.
jrnichols 8y ago
> 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.
- hnuser355 8y ago
  I believe this might be more prominent among uneducated folks of (at least in my neck of the woods) non-mainline American Protestant denominations. At least the doctors of the Catholic Church will specifically talk about preparation for death, dying well (also mentioned by Fred Rogers in the documentary I saw about him), etc.
  - ljm 8y ago
    More simply, it's not easy to let go of someone you love and say goodbye to them. It's not fair to the person ready to die, but there's a lot of pressure put on people (through TV, movies, friends) to fight for those you love, even when they don't want you to.
  - jrnichols 8y ago
    I can't disagree with that. As a whole, I think that Americans are woefully unprepared for end of life care. I encourage people to have an advance directive on file.
  - philwelch 8y ago
    Catholics tend to be on the “full code” end of the spectrum; part of the whole “culture of life” thing.
- mikeash 8y ago
segmondy 8y ago
It's also business. The hospital looks at how much money they will make vs lose if you stayed at the hospital and weigh it against the probability that you will survive. If it works against them they push towards hospice.
- JudgeWapner 8y ago
  Not just the profit from continuing treatment, but the risk forecast for malpractice lawsuits. You can still sue for malpractice because some $12/hr LPN "negligently contributed to the death" of 106-year old Aunt Opal.

by et2o 8y ago

caprese 8y ago

> 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 and couldn't or weren't willing to see the progression. This isn't a movie with a pleasant ending. The only hope is for the suffering to end, from my perspective, and in hindsight, yes, it was a spot on analysis. With regard to the doctors, now that part was just like in the movies. They hemmed and hawed and made sad empathic expressions, but didn't explain the possibilities at all. They just assume everyone is in a state of stupor, they probably assumed my rapid conclusions were some desensitized state of shock, just as they assumed my other family members clinging to hope was an equally dismissible state of denial.

busterarm 8y ago
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 child's care encouraged the parents to end the kid's suffering. The parents were absolutely invested in using all of their resources to give the child "the best care". The last few years of the kid's life were basically vegetative, with frequent interruptions of how a human with an obliterated nervous system manifests pain. I'm sorry if this reads all tragic and horrible, but that's what it is. There should be laws preventing family members from prolonging the suffering of their loved ones.
- bg4 8y ago
  And what's to prevent insurance companies from exploiting those laws to reduce costs and increase profits?
  - busterarm 8y ago
    As opposed to the doctors, nurses, hospitals, medical supply and pharmaceutical companies who profited for over a decade from the child's care?
  - Retric 8y ago
    As strange as it sounds that's not really how it works. It's a competitive industry. So, an insurance company's profit is based on total healthcare costs. The only way for the industry to make more money is to cover more people, or for healthcare costs to rise. Put another way, if total healthcare spending was 0$, their total profits would be 0$. They can cut internal costs somewhat, but that's about it.
  - mikeash 8y ago
    What prevents it now?
- whatshisface 8y ago
  >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.)
  - busterarm 8y ago
    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.
  - TheSpiceIsLife 8y ago
skookumchuck 8y ago
When my father was dying a few years ago, the doctors and nurses were very pragmatic and rather blunt in their prognosis and the options. They carefully did not make recommendations, but laid out the results of the various options. I appreciated that.
et2o 8y ago
Sorry you had a rough time getting information from your doctors. > I don't get the impression that anyone in the medical community is trying to change this. This is, in my experience, completely wrong.

jrnichols 8y ago

> 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.

hnuser355 8y ago
I believe this might be more prominent among uneducated folks of (at least in my neck of the woods) non-mainline American Protestant denominations. At least the doctors of the Catholic Church will specifically talk about preparation for death, dying well (also mentioned by Fred Rogers in the documentary I saw about him), etc.
- ljm 8y ago
  More simply, it's not easy to let go of someone you love and say goodbye to them. It's not fair to the person ready to die, but there's a lot of pressure put on people (through TV, movies, friends) to fight for those you love, even when they don't want you to.
- jrnichols 8y ago
  I can't disagree with that. As a whole, I think that Americans are woefully unprepared for end of life care. I encourage people to have an advance directive on file.
- philwelch 8y ago
  Catholics tend to be on the “full code” end of the spectrum; part of the whole “culture of life” thing.
mikeash 8y ago

segmondy 8y ago

It's also business. The hospital looks at how much money they will make vs lose if you stayed at the hospital and weigh it against the probability that you will survive. If it works against them they push towards hospice.

JudgeWapner 8y ago
Not just the profit from continuing treatment, but the risk forecast for malpractice lawsuits. You can still sue for malpractice because some $12/hr LPN "negligently contributed to the death" of 106-year old Aunt Opal.