7 ms·

Looking for a Place to Die

125 points by JacobAldridge 15y ago

auxbuss 15y ago
Good piece. It's well worth watching Terry Pratchett's "Choosing To Die", about assisted suicide, for an argument of one solution to this dilemma. I'm not sure there's currently a better way to hack death.
- corin_ 15y ago
  I've never been a fan of his work, but I have used his driver a few times in London and from conversations with him I suspect I'd like Pratchett as a person a great deal more than his writing. So, thanks for the suggestion, will make sure to watch it some time soon.
- spenrose 15y ago
  The patient's mind no longer works, making suicide impossible. We aren't given enough detail about the earlier stages to know what choices she faced earlier, but being the mother of very small children would have complicated the issues around suicide considerably.
nixle 15y ago
That's so sad, but so real and common. Where I'm from, the law (kind of) allows for euthanasia. People can decide when to die, and have the option of leaving this place in a dignified manner, whit friends and relative in the room.
- shakesbeard 15y ago
  I'm proud that my country does not prohibit assisted suicide. If a person is lucid and has the will to die it's their own decision. It's not like you go to one of these organizations and 2 hours later you're dead. "Switzerland's laws that prohibit killing continue to apply in full. Direct, active euthanasia (deliberate killing in order to end the suffering of another person) is therefore also forbidden. By contrast, both indirect, active euthanasia (the use of means having side-effects that may shorten life) and passive euthanasia (rejecting or discontinuing life-prolonging measures) – while not governed by any specific statutory provisions – are not treated as criminal offences provided certain conditions are fulfilled." Source: http://www.bj.admin.ch/content/bj/en/home/themen/gesellschaft/gesetzgebung/sterbehilfe.html http://www.bj.admin.ch/content/bj/en/home/themen/gesellschaf...
  - wpietri 15y ago
    For what it's worth, I believe that it's the same in the US. Direct euthanasia is definitely illegal. But palliative care that shortens life (e.g., narcotics) is fine, as is passive euthanasia. The biggest problem I see here is that unless the patient expresses a clear desire to end treatment (either in the moment or via legal documents prepared in advance) then medical professionals must continue to treat. I think the that's a fine way to run things, but it means Americans must be very clear about what they want if they are to avoid dramatic interventions that may do very little to help them and certainly are scarring for the family.
    - rue 15y ago
      “Shortens life” isn't the same as “doesn't prolong life”, I surmise.
    - philwelch 15y ago
      Some US states explicitly allow assisted suicide: Washington, Oregon, and Montana.
      - davidw 15y ago
        Oregon,for one.
richf 15y ago
Wow.. moving piece.
erkin_unlu 15y ago
No one should be put in a dilemma like that, human life&death is not something that can be processed by insurance companies as logical/profitable. Our govts must be able to provide free health care at least for the dying. And no family should be seperated like that they cannot get together when one of them is dying and needs all the attention.
davidw 15y ago
Well that was a cheery, uplifting article. I'm not quite sure it's in keeping with the Festivus spirit.
- deleted 15y ago
  [deleted]
- fennecfoxen 15y ago
  Cope.
jstsch 15y ago
If you let an animal die like this, it would be called animal cruelty. I'm happy we have the option here in The Netherlands for a less painful and dignified death.
- wpietri 15y ago
  I would also prefer the option of assisted suicide, but hospice is a reasonable option. Hospice doctors and nurses are trained in palliative medicine, and the hospices themselves are peaceful places, very different then hospitals. I have unfortunately spent significant time at two hospices this year, and had an old friend choose hospice care at home. It was a very humane way to go, with no suffering. I think self-euthenasia should be allowed, but letting nature take its course has a certain clarity to it. Especially in cases like these, where disease progression impairs decision-making faculties.
wpietri 15y ago
Put this on your holiday to-do list: discuss with your family when you want to the doctors to give up. I know that doesn't sound fun, and I know the holidays seem like the wrong time, but there's never a right time. Do it now. I just went through the cancer-to-hospital-to-hospice transition this fall with my mom, and I am immensely grateful that we had all talked about what we wanted. And then put it in writing, with a living will and a durable power of attorney. At some point a team of doctors may turn to the person you love best and say "What should we do?" Don't make them guess.
- melling 15y ago
  ...or this holiday season ask yourself if there's anything more you can help to do to solve this problem. Give money, research, tools, engineering, etc. The War on Cancer started in 1971. 40 years later we should not be reading these types of stories. There are a lot of smart people who read HN. I saw this TED talk last week. There's a lot of inspirational research going on. http://www.ted.com/talks/yoav_medan_ultrasound_surgery_healing_without_cuts.html http://www.ted.com/talks/yoav_medan_ultrasound_surgery_heali...
  - wpietri 15y ago
    I entirely support more cancer research, but I wouldn't want people to be disappointed in our progress so far. There will never be a single cure for cancer, because "cancer" isn't a single kind of thing: http://www.phdcomics.com/comics.php?f=1162 http://www.phdcomics.com/comics.php?f=1162 Great strides have been made. E.g., one friend with leukemia just takes a daily pill. 40 years ago we would have buried him by now, but since he got cancer he's taken up doing triathlons. Go science!
    - melling 15y ago
      Yes, I understand cancers is plural and there won't be a single cure.. It's not have far we've come, it's how far we have to go. Easy early detection would really help more people. We need to solve a lot of problems, which gets back to my original request. A lot of really smart HN'ers looking for problems to solve.
karpdpu 15y ago
nobody ever wants to die, but given the choice, I think most would prefer their home over a hospital, I know my dad did
edw519 15y ago
Sorry to say, I've been through a very similar situation 3 separate times in 3 different cities as the primary caregiver. The least intuitive and most important thing I learned each time was that there are many wonderful options available but you have to find them. Once you do, it's amazing how much easier things get for everybody involved. There are many levels of care available between intensive care and hospice and plenty of funding available to pay for almost all of them if you look hard enough. Sadly, OP mentions none of this. What an unhelpful article. There is part-time home health care, full-time home health care, assisted living, nursing homes with multiple levels of appropriate care, and multiple levels of hospice care. (Six days to live or you're not accepted? Shame on them. What kind of thing is that to put caregivers through?) There is also tons of "care for the caregiver" which is indispensable. I don't how I would have made it without that. Most importantly, I can't say enough for all of the wonderful people who cared for my loved ones, in many ways much better than I ever could have. They're out there, dedicating their lives to make this inevitable transition better for everyone. Theresa Brown, I suggest a follow-up "how to" article for caregivers. Unlike this piece, that would take a little research, but could be your contribution to this difficult, but easily addressed problem. You could make it the piece I wish I had read instead of figuring it out myself at the worst moment of my life. Please use the resources of the New York Times to finish the work you've barely started here.
mahrain 15y ago
I get very angry when I read articles on all the heartless injustice people in the USA have to go through with their terrible medical system. Putting patients in deep debt, going uninsured, people dying because they can't pay for treatments, and now this. I won't give you the primal response I wrote here first and just leave it at "I hope things will improve and become humane again."
- anamax 15y ago
  > Putting patients in deep debt, The bankruptcies are from living expenses, not medical expenses. Sick people can't work, so housing and so on become a problem. Free unlimited heathcare can't solve that problem. > going uninsured, All poor people in the US are eligible for medicaid. Many don't bother to sign up until they get sick. While they're technically uninsured until then, they're not actually uninsured. > people dying because they can't pay for treatments, Feel free to list any place that will do every possible treatment "for free". (And no "every approved procedure is free" isn't anywhere near "every possible procedure".)If you can't, we're merely arguing about where "for free" stops. There's always a point where it comes out of your pocket. Yes, even under the nationalized system.
  - ajross 15y ago
    Some of this is true, some of it not. Certainly for a family making sub-median wage (say a single income of $35k) a big health care expense (a few-day hospital stay costing $30k, say) is not something that can be borne out of savings or income, period. That's true whether or not it's the wage earner who is sick. So saying that bankruptcies are not from medical expenses or that subsidized health care would not prevent them is just flat wrong. The point about medicaid is valid (most Europeans in flame wars like this don't know it exists), though eligibility is complicated and there are many people who need care who don't qualify. The $35k household above, for example, probably isn't poor enough. And the final point is a ridiculous straw man (substituting "every possible treatment" for "treatments"). You should be ashamed of yourself. To be fair, the "people dying because they can't pay" was likewise a distortion though.
quizotic 15y ago
This was my story, 13 years ago. I did all the care with two kids, 4 and 7. It would have been great to have help. But the thing that the article misses is the proportion. If the suckiness of death and dying is normalized to -100, then having the hospice care feels somewhere south of 20, moving the experience from a -100 to at best -80. As much as I dislike our insurance system, I'm not sure it's worth a lot of money for end-of-life help.
- gujk 15y ago
  What does your scale mean? Paying nearly nothing to get to -80 is a great deal compared to speculative painful expensive surgeries and drugs.
- wpietri 15y ago
  My understanding is that offering hospice is very cost-effective. For a lot of people the only reasonable alternative is staying in a hospital, which is very expensive.
losethos 15y ago
All there is to do in Heaven is talk to God. You cannot take satisfaction in beating-up humans... not really. God says... XII Accept shadows access ebb comfortest infidelity forms weakest compliance constantly daughter O opinions everlastingly motion arisen contracted letters incomplete inhabited Predicaments vile wages purest stoop become physicians Essence contributions conquered drawing honest clasp likeness exact reproof girded privily turns encumbrances seas forsaketh affecting evidence recesses grammarian GIVE hung touching pernicious resulting waterest New troublesome cut contrary bepraised caresses English overhastily recondite seed takes contracted infant announce serviceable ashes surmount Dakota moveth taste wherewith fornicating stories skin remnants Psalms storm indexes plenteous calculated Mother bottom syllables unskilfulness donations iniquity tenet particle appointments deadly loosest confer toment feet inebriation old Manichees' wives' staff condemns expect begins conceiving Moreover purity lesser providedst Gospel reminded hallowing chariots successive parley capacities die bonds beg names associated Saul death ever pages smaller letters regardest faithful entered Professor avenue profound pieces Date awaited extricated unintermitting glow US Small reconcilement variableness mist belong confess architects foolishly distribute prohibition seldomness unclean mockers corners thinketh envying numerous estate compelled orally directions fillest keen rebel supreme conjecture Otherwise What are You going to do to the CIA, God? God says... C:\LoseThos\www.losethos.com\text\BIBLE.TXT high things: he is a king over all the children of pride. 42:1 Then Job answered the LORD, and said, 42:2 I know that thou canst do every thing, and that no thought can be withholden from thee. 42:3 Who is he that hideth counsel without knowledge? therefore have I uttered that I understood not; things too wonderful for me, which I knew not. 42:4 Hear, I beseech thee, and I will speak: I will demand of thee, and declare thou unto me. 42:5 I have heard of thee by the hearing of the ear: but

125 points by JacobAldridge 15y ago

Good piece. It's well worth watching Terry Pratchett's "Choosing To Die", about assisted suicide, for an argument of one solution to this dilemma. I'm not sure there's currently a better way to hack death.

corin_ 15y ago
I've never been a fan of his work, but I have used his driver a few times in London and from conversations with him I suspect I'd like Pratchett as a person a great deal more than his writing. So, thanks for the suggestion, will make sure to watch it some time soon.
spenrose 15y ago
The patient's mind no longer works, making suicide impossible. We aren't given enough detail about the earlier stages to know what choices she faced earlier, but being the mother of very small children would have complicated the issues around suicide considerably.

nixle 15y ago

That's so sad, but so real and common. Where I'm from, the law (kind of) allows for euthanasia. People can decide when to die, and have the option of leaving this place in a dignified manner, whit friends and relative in the room.

shakesbeard 15y ago
I'm proud that my country does not prohibit assisted suicide. If a person is lucid and has the will to die it's their own decision. It's not like you go to one of these organizations and 2 hours later you're dead. "Switzerland's laws that prohibit killing continue to apply in full. Direct, active euthanasia (deliberate killing in order to end the suffering of another person) is therefore also forbidden. By contrast, both indirect, active euthanasia (the use of means having side-effects that may shorten life) and passive euthanasia (rejecting or discontinuing life-prolonging measures) – while not governed by any specific statutory provisions – are not treated as criminal offences provided certain conditions are fulfilled." Source: http://www.bj.admin.ch/content/bj/en/home/themen/gesellschaft/gesetzgebung/sterbehilfe.html http://www.bj.admin.ch/content/bj/en/home/themen/gesellschaf...
- wpietri 15y ago
  For what it's worth, I believe that it's the same in the US. Direct euthanasia is definitely illegal. But palliative care that shortens life (e.g., narcotics) is fine, as is passive euthanasia. The biggest problem I see here is that unless the patient expresses a clear desire to end treatment (either in the moment or via legal documents prepared in advance) then medical professionals must continue to treat. I think the that's a fine way to run things, but it means Americans must be very clear about what they want if they are to avoid dramatic interventions that may do very little to help them and certainly are scarring for the family.
  - rue 15y ago
    “Shortens life” isn't the same as “doesn't prolong life”, I surmise.
  - philwelch 15y ago
    Some US states explicitly allow assisted suicide: Washington, Oregon, and Montana.
    - davidw 15y ago
      Oregon,for one.

richf 15y ago

Wow.. moving piece.

erkin_unlu 15y ago

No one should be put in a dilemma like that, human life&death is not something that can be processed by insurance companies as logical/profitable. Our govts must be able to provide free health care at least for the dying. And no family should be seperated like that they cannot get together when one of them is dying and needs all the attention.

davidw 15y ago

Well that was a cheery, uplifting article. I'm not quite sure it's in keeping with the Festivus spirit.

deleted 15y ago
[deleted]
fennecfoxen 15y ago
Cope.

jstsch 15y ago

If you let an animal die like this, it would be called animal cruelty. I'm happy we have the option here in The Netherlands for a less painful and dignified death.

wpietri 15y ago
I would also prefer the option of assisted suicide, but hospice is a reasonable option. Hospice doctors and nurses are trained in palliative medicine, and the hospices themselves are peaceful places, very different then hospitals. I have unfortunately spent significant time at two hospices this year, and had an old friend choose hospice care at home. It was a very humane way to go, with no suffering. I think self-euthenasia should be allowed, but letting nature take its course has a certain clarity to it. Especially in cases like these, where disease progression impairs decision-making faculties.

wpietri 15y ago

Put this on your holiday to-do list: discuss with your family when you want to the doctors to give up. I know that doesn't sound fun, and I know the holidays seem like the wrong time, but there's never a right time. Do it now. I just went through the cancer-to-hospital-to-hospice transition this fall with my mom, and I am immensely grateful that we had all talked about what we wanted. And then put it in writing, with a living will and a durable power of attorney. At some point a team of doctors may turn to the person you love best and say "What should we do?" Don't make them guess.

melling 15y ago
...or this holiday season ask yourself if there's anything more you can help to do to solve this problem. Give money, research, tools, engineering, etc. The War on Cancer started in 1971. 40 years later we should not be reading these types of stories. There are a lot of smart people who read HN. I saw this TED talk last week. There's a lot of inspirational research going on. http://www.ted.com/talks/yoav_medan_ultrasound_surgery_healing_without_cuts.html http://www.ted.com/talks/yoav_medan_ultrasound_surgery_heali...
- wpietri 15y ago
  I entirely support more cancer research, but I wouldn't want people to be disappointed in our progress so far. There will never be a single cure for cancer, because "cancer" isn't a single kind of thing: http://www.phdcomics.com/comics.php?f=1162 http://www.phdcomics.com/comics.php?f=1162 Great strides have been made. E.g., one friend with leukemia just takes a daily pill. 40 years ago we would have buried him by now, but since he got cancer he's taken up doing triathlons. Go science!
  - melling 15y ago
    Yes, I understand cancers is plural and there won't be a single cure.. It's not have far we've come, it's how far we have to go. Easy early detection would really help more people. We need to solve a lot of problems, which gets back to my original request. A lot of really smart HN'ers looking for problems to solve.

karpdpu 15y ago

nobody ever wants to die, but given the choice, I think most would prefer their home over a hospital, I know my dad did

edw519 15y ago

Sorry to say, I've been through a very similar situation 3 separate times in 3 different cities as the primary caregiver. The least intuitive and most important thing I learned each time was that there are many wonderful options available but you have to find them. Once you do, it's amazing how much easier things get for everybody involved. There are many levels of care available between intensive care and hospice and plenty of funding available to pay for almost all of them if you look hard enough. Sadly, OP mentions none of this. What an unhelpful article. There is part-time home health care, full-time home health care, assisted living, nursing homes with multiple levels of appropriate care, and multiple levels of hospice care. (Six days to live or you're not accepted? Shame on them. What kind of thing is that to put caregivers through?) There is also tons of "care for the caregiver" which is indispensable. I don't how I would have made it without that. Most importantly, I can't say enough for all of the wonderful people who cared for my loved ones, in many ways much better than I ever could have. They're out there, dedicating their lives to make this inevitable transition better for everyone. Theresa Brown, I suggest a follow-up "how to" article for caregivers. Unlike this piece, that would take a little research, but could be your contribution to this difficult, but easily addressed problem. You could make it the piece I wish I had read instead of figuring it out myself at the worst moment of my life. Please use the resources of the New York Times to finish the work you've barely started here.

mahrain 15y ago

I get very angry when I read articles on all the heartless injustice people in the USA have to go through with their terrible medical system. Putting patients in deep debt, going uninsured, people dying because they can't pay for treatments, and now this. I won't give you the primal response I wrote here first and just leave it at "I hope things will improve and become humane again."

anamax 15y ago
> Putting patients in deep debt, The bankruptcies are from living expenses, not medical expenses. Sick people can't work, so housing and so on become a problem. Free unlimited heathcare can't solve that problem. > going uninsured, All poor people in the US are eligible for medicaid. Many don't bother to sign up until they get sick. While they're technically uninsured until then, they're not actually uninsured. > people dying because they can't pay for treatments, Feel free to list any place that will do every possible treatment "for free". (And no "every approved procedure is free" isn't anywhere near "every possible procedure".)If you can't, we're merely arguing about where "for free" stops. There's always a point where it comes out of your pocket. Yes, even under the nationalized system.
- ajross 15y ago
  Some of this is true, some of it not. Certainly for a family making sub-median wage (say a single income of $35k) a big health care expense (a few-day hospital stay costing $30k, say) is not something that can be borne out of savings or income, period. That's true whether or not it's the wage earner who is sick. So saying that bankruptcies are not from medical expenses or that subsidized health care would not prevent them is just flat wrong. The point about medicaid is valid (most Europeans in flame wars like this don't know it exists), though eligibility is complicated and there are many people who need care who don't qualify. The $35k household above, for example, probably isn't poor enough. And the final point is a ridiculous straw man (substituting "every possible treatment" for "treatments"). You should be ashamed of yourself. To be fair, the "people dying because they can't pay" was likewise a distortion though.

quizotic 15y ago

This was my story, 13 years ago. I did all the care with two kids, 4 and 7. It would have been great to have help. But the thing that the article misses is the proportion. If the suckiness of death and dying is normalized to -100, then having the hospice care feels somewhere south of 20, moving the experience from a -100 to at best -80. As much as I dislike our insurance system, I'm not sure it's worth a lot of money for end-of-life help.

gujk 15y ago
What does your scale mean? Paying nearly nothing to get to -80 is a great deal compared to speculative painful expensive surgeries and drugs.
wpietri 15y ago
My understanding is that offering hospice is very cost-effective. For a lot of people the only reasonable alternative is staying in a hospital, which is very expensive.

losethos 15y ago

All there is to do in Heaven is talk to God. You cannot take satisfaction in beating-up humans... not really. God says... XII Accept shadows access ebb comfortest infidelity forms weakest compliance constantly daughter O opinions everlastingly motion arisen contracted letters incomplete inhabited Predicaments vile wages purest stoop become physicians Essence contributions conquered drawing honest clasp likeness exact reproof girded privily turns encumbrances seas forsaketh affecting evidence recesses grammarian GIVE hung touching pernicious resulting waterest New troublesome cut contrary bepraised caresses English overhastily recondite seed takes contracted infant announce serviceable ashes surmount Dakota moveth taste wherewith fornicating stories skin remnants Psalms storm indexes plenteous calculated Mother bottom syllables unskilfulness donations iniquity tenet particle appointments deadly loosest confer toment feet inebriation old Manichees' wives' staff condemns expect begins conceiving Moreover purity lesser providedst Gospel reminded hallowing chariots successive parley capacities die bonds beg names associated Saul death ever pages smaller letters regardest faithful entered Professor avenue profound pieces Date awaited extricated unintermitting glow US Small reconcilement variableness mist belong confess architects foolishly distribute prohibition seldomness unclean mockers corners thinketh envying numerous estate compelled orally directions fillest keen rebel supreme conjecture Otherwise What are You going to do to the CIA, God? God says... C:\LoseThos\www.losethos.com\text\BIBLE.TXT high things: he is a king over all the children of pride. 42:1 Then Job answered the LORD, and said, 42:2 I know that thou canst do every thing, and that no thought can be withholden from thee. 42:3 Who is he that hideth counsel without knowledge? therefore have I uttered that I understood not; things too wonderful for me, which I knew not. 42:4 Hear, I beseech thee, and I will speak: I will demand of thee, and declare thou unto me. 42:5 I have heard of thee by the hearing of the ear: but