
We’re Bad at Death - pmcpinto
https://www.nytimes.com/2017/05/10/upshot/were-bad-at-death-first-we-need-a-good-talk.html
======
adrianm
I have a terminal diagnosis of metastatic rectal cancer at the age of 27. I'm
receiving treatment at Memorial Sloan Kettering and the disease is under
control.

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.

~~~
Numberwang
I'm happy you seem to have this figured out. You could spend all your time in
anxiety and horror (I guess I could too, I have no idea what is in my future)
but it's so unnessary. Hack on and enjoy the sunshine.

------
Merad
I'm surprised it hasn't been mentioned yet, but no, we can't talk. We
literally cannot have an adult conversation about this topic. Not, at least,
in the US.

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.

~~~
cloverich
I remember this clearly because I had only just become literate on the dying
process and the costs that simply not having those conversations incurred. It
was so disheartening to see such an easy win for both reducing suffering and
costs get politically derailed (ironically by a party claiming it's fiscally
conservative). There are so few easy wins in medicine and this is very clearly
one of them.

------
jasim
Death is probably the most philosophical moment of our lives, but
unfortunately it leaves us no time to contemplate it. Among the few things I
appreciate about religion is how it tries to bring our lives into perspective
by incessantly reminding us of its end. But we're all sorely under-prepared
for it. Not just in the western countries - I'm from India and a close member
of my family died of cancer two years ago, and we were all woefully
underprepared for it.

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.

~~~
WalterSear
>Among the few things I appreciate about religion is how it tries to bring our
lives into perspective by incessantly reminding us of its end.

Most religions, and all the major ones, do the opposite of that.

~~~
ashark
Yeah, that line was surprising to me, too.

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.

~~~
jasim
Yes they talk about death in the self-serving "how can anything in this life
be important when there's an eternity of unimaginable bliss and continued, but
changed, eternal life ahead?" sense.

~~~
nsxwolf
You're talking about doomsday cults, not major world religions. The existence
of even a single church-run soup kitchen is the black swan that destroys your
argument. Major world religions are very much concerned with the here and now
and taking care of the people in it.

~~~
zzzzzzzza
churches spend aid money/donations very, very ineffectively, when they do
spend it on non-evangelical causes.

------
api_or_ipa
It's unfortunate that the article did not speak of the Right to Die movement.

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...](https://scc-csc.lexum.com/scc-csc/scc-
csc/en/item/14637/index.do)

------
badgers
NPR's Planet Money did a podcast on a a town in Wisconsin that reduced health
care costs by having conversations with patients about death. It's worth a
listen for an inexpensive solution to a costly problem:
[http://www.npr.org/sections/money/2016/10/05/496751771/episo...](http://www.npr.org/sections/money/2016/10/05/496751771/episode-521-the-
town-that-loves-death)

~~~
gavman
Came here to post that link. RadioLab also did a good episode on the
difference between what doctors vs regular people say they want in terms of
end of life care: [http://www.radiolab.org/story/262588-bitter-
end/](http://www.radiolab.org/story/262588-bitter-end/)

------
zafka
I was forced to have this conversation early as I was not married until
recently, and my then girlfriend and I signed power of attorney for each
other. It is really worth the time and discomfort to talk about this with your
spouse and loved ones. If you really want to be prepared , volunteer at
hospice, or at least talk to someone who does.

------
thatwebdude
I witnessed the death of my close grandfather a few years ago at 27. I was
there at the moment he died and it was quite eye opening. Ever since I've
developed a different outlook and understanding of death that I would have
never had had I not witnessed it first-hand so closely.

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.

------
spenrose
Highest recommendation for Atul Gawande's Being Mortal, a book on this topic:
[http://atulgawande.com/book/being-mortal/](http://atulgawande.com/book/being-
mortal/)

------
germinalphrase
Frank Ostaseski did a talk at the Long Now Foundation about his experience
working with the dying and the families of the dead. It's moving and touches
on some similar ideas to the NYTimes article.

[0][http://longnow.org/seminars/02017/apr/10/what-dying-teach-
li...](http://longnow.org/seminars/02017/apr/10/what-dying-teach-living/)

------
xherberta
Here are a couple of related resources:

An eye-opening conversation with a palliative care physician:
[http://www.econtalk.org/archives/2014/11/becky_liddicoat.htm...](http://www.econtalk.org/archives/2014/11/becky_liddicoat.html)

"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/](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!

------
peter303
I did not directly witness a death until I was 44. We live in an age-
segregated and health-segregated society which limits experience with death.
Some people asked said they were older than me for their first death. More
than century ago when death rates were greater, death was commonplace in the
community.

------
avtar
[http://deathcafe.com/deathcafes/](http://deathcafe.com/deathcafes/)

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.

------
stupidhn
> _It’s not clear all that care improves how long or how well people live.
> Patients receiving aggressive medical care at the end of life don’t seem to
> live any longer, and some work suggests a less aggressive approach buys more
> time._

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.

------
6stringmerc
I'll take the time to explain my 20+ year journey of philosophy regarding the
Meaning of Life: Why Death Isn't Scary when people finally loosen their grip
on binary "Reward" or "Punishment" conceptions of "the Afterlife" tied to
choice of [Insert Name Here] Religion. We're still extremely primitive as a
species, by and large. In the US, this manifests in our immaturity with the
subject of Death, whereby lots of people show more acceptance with pets than
relatives (understandable!) on the subject.

------
mikhailfranco
Also see recent Economist leader and article:

[http://www.economist.com/news/leaders/21721371-death-
inevita...](http://www.economist.com/news/leaders/21721371-death-inevitable-
bad-death-not-how-have-better-death)

[http://www.economist.com/news/international/21721375-how-
med...](http://www.economist.com/news/international/21721375-how-medical-
profession-starting-move-beyond-fighting-death-easing-it-better)

------
pschon
Be aware that hospice care is simply to end someone's life without pain. It's
giving up. My father was not even in pain but everyone had given up and I can
still hear the hospice person asking " are you in pain, are you in pain" but
he was never really in pain; just very weak. The hospice care he received in-
house in TN was free. It didn't last long. I've nothing against people who do
want to give up when the pain is too much. Just be sure you understand hospice
care.

------
swayvil
I think that we need religion here.

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.

~~~
Broken_Hippo
I disagree.

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.

~~~
swayvil
Great, but what about the other 99.999%?

And what about the mysteries of the afterlife? Aren't you even curious?

------
owly
No fear, no death by Thich Nhat Hanh is an outstanding resource. “We should
live every day like people who have just been rescued from the moon.”

------
lmm
> Despite a popular misconception, doctors don’t die much differently:
> Physicians use hospice care and die in hospitals at rates similar to
> everyone else.

I don't suppose the New York Times thinks articles like
[http://www.nytimes.com/2013/11/20/your-money/how-doctors-
die...](http://www.nytimes.com/2013/11/20/your-money/how-doctors-die.html)
played any part in creating this "popular misconception"?

~~~
burkaman
That was a Marketplace story[1] that the NYT ran. Marketplace updated their
story in 2016 to point to the same study[2] this NYT article points to. The
study says doctors do die differently than the average American, but not when
you account for education and income.

[1]: [https://www.marketplace.org/2013/11/19/health-care/new-
math-...](https://www.marketplace.org/2013/11/19/health-care/new-math-health-
care/how-doctors-die)

[2]:
[http://jamanetwork.com/journals/jama/fullarticle/2482317](http://jamanetwork.com/journals/jama/fullarticle/2482317)

~~~
TeMPOraL
> _The study says doctors do die differently than the average American, but
> not when you account for education and income._

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"?

~~~
burkaman
We aren't speaking lingua sciencia, we're speaking more casually to the
general audience of our newspaper. In that case, it's completely acceptable to
say "doctors don't die like the rest of us", especially when you write that in
2013. It's true, they don't. In 2016, when we know it's not the "doctor" part
that matters but the "rich educated" part, it's still true to say "doctors
don't die like the rest of us", as long as you make it clear why that's the
case.

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.

~~~
TeMPOraL
I see what you meant now, thanks for the clarification.

------
tn135
One thing that can ease the pain of death is by probably discussing the
benefits of it.

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.

~~~
melling
I paid off my mortgage by 44, and I don't have kids. Who is going to want my
78.94 year old organs?

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.

~~~
chimen
> "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"

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.

~~~
melling
Yes, I get that every time I make the observation. I waste a lot of time on
the Internet too, much less than in the past. i'm certainly as guilty as the
next person. However, I'm trying to be more self-aware about it. Thirty years
ago I thought all the Internet conversation would amount to more.

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.

~~~
ansible
_Thirty years ago I thought all the Internet conversation would amount to
more._

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_ __

[1][https://www.baen.com/david-s-sling.html](https://www.baen.com/david-s-
sling.html)

~~~
marcosdumay
And yet I'm here reading a comment against my high rated belief that the
Internet makes information much easier to get.

~~~
ansible
The Internet does make information easy to get. It is truly wonderful in that
regard.

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.

