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.
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.
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.
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.
...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.
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:
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!
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.
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.
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."
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.
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."
I have a "dread disease" and came back from death's door and my approach is way cheaper, more effective and more humane (than conventional medical treatments). It all came out of pocket because the expenses were not "medical", they were for eating better and things like that. I'm now in a real mess financially (complete with eviction notice). The general/typical response from people with the same diagnosis who routinely lament the horrors of what gets done to them medically and the egregiously high expense for medical care: I'm a liar, a charlatan and a snake oil salesman.
I don't know what it will take for you to get this Christmas wish fulfilled. But it's a little more complicated than mere scientific/medical research.
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.
The financial burden is not just for those without insurance or the “poor”.
My wife was given a 30% chance in an ICU room earlier this year. Since then we have been through a month in hospital, multiple surgeries, and many doctors appointments. The total cost to date has been over $250,000. Even with insurance we have still paid $10,000 and covered another $10,000 while waiting for reimbursement. The new insurance calendar year starts on January 1st – so we will be paying another $10,000 for a surgery planned in early 2012.
Our household income is $30-40k above the US median and we have savings, but it’s amazing how quickly your savings start shrinking when your partner is unable to work and you need to take months of unpaid leave to attend appointments and sit in surgery waiting rooms.
Any politician that talks about fostering innovation and entrepreneurship but continues to support the status quo is a fraud. Surely removing the financial and administrative burden of healthcare for business is better than any tax cut congress could come up with?
> Our household income is $30-40k above the US median and we have savings, but it’s amazing how quickly your savings start shrinking when your partner is unable to work and you need to take months of unpaid leave to attend appointments and sit in surgery waiting rooms.
Bingo. Heath insurance doesn't address those costs.
> Surely removing the financial and administrative burden of healthcare for business is better than any tax cut congress could come up with?
And you think that Congress knows how to do this?
Medicare fraud is probably close to $100B/year. How are you going to do better AND reduce costs?
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.
> And the final point is a ridiculous straw man (substituting "every possible treatment" for "treatments"). You should be ashamed of yourself.
Why? The claim was that someone was dying because they couldn't afford a treatment. That's going to happen under any system that doesn't pay for every possible treatment.
Since all systems limit treatment, we're actually arguing about where the limits should be and it's dishonst to suggest otherwise.
The bankruptcies are from living expenses, not medical expenses.
Families can generally house other family members. They can't pay $90k medical bills.
All poor people in the US are eligible for medicaid. Many don't bother to sign up until they get sick.
How are poor people supposed to know this? I didn't know this. I went to the website and it wasn't the least bit clear. Discoverability is absolutely terrible.
The rest of your statements are just silly extrapolations. There will always be edge cases that cannot be fully served.
>> The bankruptcies are from living expenses, not medical expenses.
> Families can generally house other family members. They can't pay $90k medical bills.
The point is that they don't have to. However, living expenses must be either paid or borrowed from folks who are fairly insistent on being repaid. Hence the bankrupcies, and if you're going to file, you claim everything.
>> All poor people in the US are eligible for medicaid. Many don't bother to sign up until they get sick.
> How are poor people supposed to know this?
Poor people don't have to know it because health care professionals know it. It's how said health care professionals get paid for treating poor people.
Also, why do you think that you know what poor people know? When I was poor, I knew things that I don't know now.
How is "there are always treatments that won't be paid for" a silly extrapolation? You even (seem to) admit that it's true...
living expenses must be either paid or borrowed from folks who are fairly insistent on being repaid
Like I said, most people have family they can move in with in an emergency. Most families, however, do not have $90k to cover a medical bill.
Also, why do you think that you know what poor people know?
1) I've been not poor.
2) I'm currently classified as poor.
3) I have vastly greater informational resources at my disposal than most poor people.
How is "there are always treatments that won't be paid for" a silly extrapolation?
Because it's an utterly pointless statement. Of course there will always be some portion of the populace that cannot be ideally treated. That is no argument whatsoever against doing something to improve the standing of the majority.
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.
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.
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.
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.
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.
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.
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.