We’re Bad at Death
nytimes.com
nytimes.com
However, it's still incurable, and making the patient aware of this was clearly difficult for my doctor, despite his incredible bedside manner. It was actually sort of humorous because the news didn't phase me; I had already come to terms with my death months ago.
The reason I mention this is because today I finally went over the long term plan for my life and death. Essentially Sloan Kettering embraces palliative medicine and combination therapies and they don't give up on you even as you transition from a control-focused treatment plan to a palliative one.
Furthermore, your team of doctors orchestrate all of this so you and your family do not have to stress about how to manage end-of-life care. It's really amazing.
So in my case, I will continue treatment until the disease becomes progressive and we've exhausted all treatment options (chemotherapy, immunotherapy, etc). Then comes the experimental stage; MSK is a research institution so they could potentially have experimental treatments I could trial.
Failing that, my primary oncologist will work alongside a doctor here specializing in palliative medicine and coordinate all future care together. Once the cancer has progressed to the point where I can no longer live a normal life (I'm still working and living life fairly normally, with caveats), they will coordinate hospice and such.
It's nice to not have to worry about that stuff despite the terminal nature of the disease. My hope is that MSK will be "good at death", to paraphrase the title, when it comes to my own. So far I have received amazing care and treatment here, so I am very optimistic. All I know at this point for sure is that I'm going to keep hacking until my last breath.
The ACA (Obamacare) tried to add a provision allowing Medicare to cover voluntary counseling on living wills, end of life care, etc., to encourage more seniors to get educated on the topic. Conservatives made up the blatant and absurd lie that the ACA would require seniors to "stand in front of death panels and convince them that they deserved healthcare." The lie stuck, and stuck hard. At one point polls showed that 30% of the public (and 47% of Republicans) believed the lie, and it persists to this day.
The treatment got more aggressive as the day neared; we were shuttling to and from the hospital every week, and towards the end my extended family of around twenty people were staying at and near the hospital for three weeks.
He was intubated after both lungs failed. We didn't know what it really meant - a few family members wanted the doctors to "do all they can" and so they obliged. He was under tremendous pain, and went through multiple radiations, and then was intubated for about a week. It was pointless because the lungs simply weren't going to come back. But the patient nor the family was ready to acknowledge the inevitability of the situation and so we went ahead with it, and he was intubated, and we all waited.
Intubation puts the onus of the big decision on the caretakers. Medical care can prolong the state of coma for quite a long time with artificial respiration - the bills simply accumulate, the patient prolongs their extreme suffering, and the entire family waits in extreme agitation and anxiety. The laws concerning removing intubation and thus letting go the patient seemed to be murky in India, and so (or for the money) the doctors were reluctant to move to palliative care, and the caretakers weren't ready to carry the responsibility of forcing the decision.
I now know that in my terminal condition I do not want to be intubated. I also know that death is a taboo and it takes a certain kind of philosophical wisdom to think and speak about it. I value that a lot now, and as someone else recommended Atul Gawande's Being Mortal should be read by anyone who might die.
Most religions, and all the major ones, do the opposite of that.
I guess it's true in a sense (see: Vanitas art) but usually in the service of deflecting the idea that we actually end. Less "how can anything in this life be important when you stop existing?" and more "how can anything in this life be important when there's an eternity of unimaginable bliss and continued, but changed, eternal life ahead?"
The point of much religion is that there isn't an end, in a very real not-metaphorical sense, which makes death qualitatively different than if there is.
I lost a close friend recently and another is terminally ill. The most we can do is be with them in the moment as much as possible, but it is curious to me how my mind doesn't want to go to thinking about myself in that state one day.
I don't think that's true. Our experiences with death, whether it comes from others dying or us having a close call, forces us to contemplate our own end. Memento mori and all that.
Most people are ok with not existing. It's the dying part that is tough to deal with.
Is that true? I find it almost impossible to really even think about. It makes me feel like I'm falling down a well, and the fully-realized concept of non-existence is the sides, and my mind is scrambling against it but just can't quite grab ahold, but gradually becomes more disturbed and my stomach sinks further from the falling the longer I try. It's full-on Lovecraftian/Cosmic horror.
And I think I'm relatively well-adjusted and accepting-of/content-with reality on that front, for a non-religious.
[EDIT] minor grammar fix
I want nothing more than to never cease being, to never stop learning and experiencing and seeing how the world and I change, and the knowledge that one day I'll stop fills me with intense dread and sadness. It's utterly egotistical, but I don't want there to ever be a time where I don't exist. Which is ridiculous, because I didn't exist for the huge of time, but now that I'm here, I really don't want to stop being. The idea that instead of moving on or experiencing something new I'll experience nothing, and I'll never come back from it, never get a chance to experience anything ever again, is horrifying.
I had a very close friend who was deeply interested in spirituality and philosophy and who devoted a good part of his life to understanding our existence. Nothing prepared him for the painful cancer death experiences he endured. Intellectual perceptions are nothing against our first and only viceral experiences of death....
Modern hospitals are far from an ideal place to be if one has a terminal illness. They are antiseptic, literally anti-aesthetic. From my experience, the people I've known that had a terminal illness yet received extensive care up until the moment of death did not really want to receive further treatment because they understood that death was coming and would have rather died in their home or gone on one last vacation. The treatments were painful and left them barely conscious of their surroundings.
The demands that some families make can be selfish. The infirmed that I knew only went through with these treatments for the sake of their family to give them some sense of false hope, that they'd never give up fighting. It's sad to watch as I think a happier outcome could be achieved if we learn to accept the imminent fate and enjoy the precious time that is left, having the last moments with a loved one be a joyous time to cherish.
From the beeping and humming of numerous machines, the drab, monochrome interiors to the lack of windows. A patient's well being has an effect on their recovery. They would greatly benefit from a redesigned concept with this well being as one of the focal points.
If anyone is interested, here is a talk on how we can improve end of life care. It is without doubt the most inspiring and powerful presentation I've ever seen at TED.
https://www.ted.com/talks/bj_miller_what_really_matters_at_t....
I think it was this you wanted to link to: https://www.ted.com/talks/bj_miller_what_really_matters_at_t...
EDIT: Just finished watching it, it's really a great talk and I found it touching, quite rare for the cynical individual that I am. The frankness and honesty of looking at things was moving.
Religion doesn't do that. Philosophy and thinking does. Religion does the opposite of what you claim. It teaches us to ignore death because there is an afterlife, etc.
I recently had a close family member choose to exercise this right. Instead of wasting away from inoperable cancer, she chose precisely the time and place she wanted to die. It's a tough subject, but for a non-trivial number of people, having control over their destiny provides a more satisfying end of life care.
It's time for more states and countries to pass more holistic and comprehensive legislation around this right. I'm Canadian, so here's the Supreme Court judgement that established this right for Canadians[0]. The arguments are very well justified in my opinion.
[0] https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/inde...
He seemed okay, and didn't fight it. Ironic considering how long he fought cancer all the years before... having witnessed that fact was a little relieving to me. I imagined it much more difficult. However he was at a very different stage in life, saw it coming, and was ready. I suppose that's the most optimistic outcome.
[0]http://longnow.org/seminars/02017/apr/10/what-dying-teach-li...
An eye-opening conversation with a palliative care physician: http://www.econtalk.org/archives/2014/11/becky_liddicoat.htm...
"Five Wishes," a tool to guide you through conversations with loved ones about end-of-life care (not to be taken as a replacement for a living will, as I don't think it will hold up legally in all states) https://agingwithdignity.org/five-wishes/
And if you really want to get motivated to have these conversations with your loved ones, check out Otis Brawley's book "How We Do Harm," which has a chapter that is a HORROR story of what happens when a patient's family asks that "everything" be done to keep him alive. The doctors felt that they were torturing the patient, who had no reasonable prospect for recovery. Yet the family insisted that "everything" be done, including extremely painful procedures and withholding pain medication because the patient's respiration was too fragile.
Don't be this family! Don't be this patient!
I've been meaning to attend a regularly scheduled Death Cafe here in Toronto but life events keep coming up. Looks like they take place in a lot of cities around the world.
This one bothers me as a Canadian. As everyone knows, we have a strained socialized medical system with long waiting lists. How many resources are tied up futilely attempting to stave off the death of people who, for lack of a better term, "have no chance"? Meanwhile, it's pretty hard for us to get anticipatory or preventative care. I can count on one hand the times I've spoken to a doctor.
http://www.economist.com/news/leaders/21721371-death-inevita...
http://www.economist.com/news/international/21721375-how-med...
No, I don't mean this corrupted book-cult that religion has become. I mean real religion. The kind where we have an expert who goes and sees gods, heavens, afterlife stuff etc using special technology like mushrooms and meditation; and then tells us about it, and helps us deal with it.
We could really use that so we can handle death better.
I'm perfectly ok with death being final. No afterlife. No amount of hallucinogens have hinted at such a thing, and neither has meditation. You have to have the belief first for that to happen.
You might feel better with it, but I'm good. And I'd rather not force these sorts of things on others.
And what about the mysteries of the afterlife? Aren't you even curious?
I don't suppose the New York Times thinks articles like http://www.nytimes.com/2013/11/20/your-money/how-doctors-die... played any part in creating this "popular misconception"?
1) Doctors "choose between hospice and hospitals" at rates similar to everyone else, and
2) "Doctors choose hospice care" and "die at rates similar to everyone else" (despite preferring hospice care).
[1]: https://www.marketplace.org/2013/11/19/health-care/new-math-...
[2]: http://jamanetwork.com/journals/jama/fullarticle/2482317
Correct me if my linga sciencia is a little rusty, but doesn't "something does X, but not if you account for [factors]" literally mean "something does not X"?
You could hypothetically say Top Investment Bankers do cocaine at rates similar to people making 10+Million per year, but the sample size of people making 10+ Million a year is tiny and a large chunk of those people are investment bankers.
PS: The other issue is showing population A is different from population B becomes harder as you decrease population size. With 1 million people 0.5% can be significant with 5,000 people 0.5% generally looks like noise.
To specifically address your question, I phrased my sentence poorly. It is literally true that doctors don't die like the average American, no matter what you account for, but that's a misleading statement because doctors aren't average.
I wish people could sell their organs after their death. Putting grandkids through college or paying for the mortgage etc. could make it easier for people to talk about death.
It will also make it easy for rich leeches to force poor people into "voluntary" deaths, to improve the fortune of their remaining family members.
Putting organs on the market might make certain ethical dilemmas about economic inequality more obvious to the casual bystander, but the same sort of ethical quandaries are already structurally woven into the global economic system.
http://www.econtalk.org/archives/2015/09/tina_rosenberg.html
Edit: specifically, this is about kidney donation from living donors, not after-death donation.
It's not different at all. We're not different from the Aztecs: our economy has become an elaborate system of human sacrifice to false gods.
You are right but I am unable to see why might think it is bad. Poor people taking more risks to come out of poverty is very natural and should be encouraged. Why do you think I left my homeland, left my parents, friends and Gods to come to Silicon Valley ?
If you are not going to allow poor people to take risks and make hard choices you are keeping them in perpetual poverty.
Seems other way round to me. It is the restrictions on organ trade that is keeping poor.
Only in a world where getting rich is about "taking risks" and not about being ruthless, luck, connections, and inheritance.
All those are important but then risk is also one way to get rich faster.
Poor people don't take more risks to come out of poverty... Poor people take risks because they have no choice and they remain in poverty.
> Why do you think I left my homeland, left my parents, friends and Gods to come to Silicon Valley ?
That's not the type of risk we are talking about. We are talking about things like coal miners.
This sounds little different than the failed Marxist strategy of 'sharpening the contradictions of capitalism' in hopes of awakening class consciousness among the proletariat. Your eschatology seems to suffer from some glaring ethical flaws from where I'm sitting.
What is wrong in rich people parting their wealth to help poor people while benefiting their family members ?
The voluntary part however is very important and in a country like USA that part can generally be achieved much better than say India or China. Give instant green-cards to the family members of organ donors from India and China instantly and USA will not have a problem of organ donation queue while helping millions of Chinese and Indian people live a better life.
What's wrong is that life and health should be a right to everybody, not just to those who can buy it out.
I am unable to see how life and health can be right without justifying force and violence. If someone needs a Kidney and if it is a right then it must be forcibly taken from someone else without that you can not call it a right.
Or you know, it can be either taken from a donations pool where everybody has access to, or the person may just not have it.
Prioritizing the rich to live is not really ethical in my book.
If the donation pool is limited and a sick person is not allowed to use his wealth to save himself, it is violence on the sick person.
College education is an example. People will spend resources on whatever they think is useful. Who are we to judge ?
We've gone so far away from proper notions of the purpose and meaning of a society that people are talking about selling organs to pay for public goods. I'm not talking about your proposal to sell organs. It's your proposal to do something so drastic to pay for something so basic.
You generally don't want to start going that road.
> Fast-forward 20+ years, and it'll become expected part of life,
Yes. I think people will probably have a reverse mortgage like thing where they will be able to borrow (but lot less) money today with a promise that they will have to donate their kidney when the time comes. People with certain ethnicity, blood group, genetic makeup etc. will become more valuable and hence will be able to derive more value and hence "rare type" will stop being rare type. This is a great outcome.
At the moment rich people from developed countries hunt for organ donors in Mexico, China, India and Africa bringing a lot of misery to those countries and money for the politicians and smugglers. Do you really like little Indian kids kept in a basement forever only to be killed like chickens later for their organs ? Or would you like to see the American justice system being applied to maximise individual freedom with full protection of law ?
Personally, I hope genetics will soon advance to the point the organs can be grown, thus rendering the whole issue moot.
They are not powerless to resist the ethical incentives. They are ethically corrupt and your implicitly endorsing their corrupt behavior by treating it as an inevitability that is better commercialized than eliminated.
In any case, it seems far more likely that some combination of medical technologies is likely to lead to lab-grown organs before the establishment of a fleshy stock exchange.
I find it weird that we are denying poor people an excellent opportunity to pull their family out of poverty instantly even after an unfortunate event. Here we are using nature's forces to force the "rich leeches" (as one person wrote above) to part with their wealth and help the poor family.
At the moment rich Americans fly to India and China where gangs (and government) illegally harvest organs for the benefit of world rich. If USA regulates the organ trade within USA we can avoid all that misery for poor Indians.
I suggest you want the Indian movie Ship of Theseus which dwelves on this topic.
My point has nothing to do with organ harvesting. It has to do with the U.S. being dysfunctional as a society that organ harvesting for something as basic as education is being talked about.
My personal feeling is that if humans would quit wasting their time bullshitting on the Internet all day, and we figured out a way to collectively be more productive, we could cure cancer, create artificial organs, extend life by a few healthy decades, eliminate poverty, etc then die peacefully in our sleep around 120.
I have no idea how we could accomplish this, but I have notice over the years, that we seem to repeatedly have the same conversations, and they don't add anything to our understanding or advancement in any way.
There isn't an age limit on donating organs.
http://news.bbc.co.uk/1/hi/health/8226709.stm
> Professor James Neuberger, associate medical director of NHS Blood and Transplant, said: "The belief that there is some sort of age limit on becoming an organ donor is a complete myth.
> "Organs are successfully transplanted from people in their 70s and 80s, and the oldest cornea donor recorded was 104 years old.
You just wasted time on the internet telling people not to waste time on the...internet. Let's not take from the importance of the internet and how much we accomplished in the past years just from being able to ask strangers about our problems and receive answers...among many other things.
You can't add/multiply intelligence. Even if 1,000,000 researches work on curing cancer compared to 1,000 it might still be solved around the same time. In other words, putting 1000 people bad at math together in a room doesn't mean they are going to bring any new algorithm out.
It's all a symbiotic process and things need to move in all directions just so you can tackle certain issues at the right time with the right tools.
I didn't offer a solution to the problem. I simply threw it out there for others to ponder. Yeah, I know i'll get a bunch of answers that start with "you can't..."
Still, collectively we waste a lot of time, which i see as untapped potential. We're going to get self-driving cars and we'll probably just get an early start on HN.
Finally, the observation that you missed as you rushed to tell me that I was wasting time too, and it can't work because... is that we need to collectively figure out a way to capture the wasted time of millions of people.
This is the topic worth discussing. The time I spent on HN e.g. today, bitching about Uber, would not likely contribute anything to curing cancer if I were doing anything else with it. It would be great to have more ways to capture little amounts of unskilled effort from many people and channel them into something good. But besides working more to give more to charity, I'm out of ideas.
Thirty years ago (reading Marc Stiegler's book "David's Sling" [1]), I expected that the Internet would enable us to more effectively communicate, and enable us collectively to make better and smarter decisions as a society.
And... that's not exactly what happened. We've instead made it even easier to find groups of people who will reinforce our existing beliefs, and easily exclude inconvenient truths. Sigh
What I was expecting with the Internet is that it would lead to a widespread increase in correct beliefs and (eventually) wisdom as well.
Certainly, some individuals do use the increased information availability to great benefit. But this isn't nearly as widespread as I predicted and hoped it would be.
How I wish there was some way I could persuade you never to do this again...
We're not ready to accept that money means life or death. Two people on waiting list for transplants: one has the money, the other doesn't.
Of course the person with the money still can go to another state /country and try to get in a smaller waiting list