
What We Get Wrong About Dying - dnetesn
http://nautil.us/issue/55/trust/what-we-get-wrong-about-dying
======
ivm
"We live in a culture where it has been rubbed into us that to die is a
terrible thing. And that is a tremendous disease from which our culture
suffers, and we notice it firstly in the way in which death is swept under the
carpet.

This is one of the major problems in hospitals — when a family conspires with
the doctor to keep from grandmother the knowledge that she is dying.
Grandmother suspects that she is dying but probably doesn’t really want to
know for sure and her family talk with her in such a way as to say, 'Well
you’re probably be getting alright in a few weeks' — because they have this
funny feeling that it’s important to build up courage and hope. And so they
become liars and the mutual mistrust develops. So the person is left to die
alone, suddenly, unprepared, and doped up to the point where death hardly
happens. And there is no derivation from it of the peculiar spiritual
experience that can come with death."

– Alan Watts

~~~
chimen
I don't know...I see a silver line here. There are many situations where
putting everything on the table might make the situation worse. Something like
a negative placebo effect can occur here and, for patients that may still have
a battle in them, the depression and fear resulted from knowing too many
things might worsen things.

My father died 8 years ago and I remember that we all knew he had just a few
weeks left in him. We didn't tell him and no doctor did either. He was still
talking about how he can't wait to go fishing once he gets out of there. I
think it was something nice to keep him from diving down in panic attacks and
depression as I imagine I would knowing that my situation is that bad.

I'm not so brave and I don't know if I would like someone to tell if I'm about
to die soon...maybe I would; this is hard to discuss from outside.

~~~
Robotbeat
Panic attacks and depression _are_ what we often _imagine_ being told we'll
die will do to us, but I've heard anecdotes that suggest the opposite: a sense
of peaceful resignation and acceptance.

~~~
fapjacks
This is one of the reasons so many people in execution videos seem resigned to
their fate; because they are. Just listen to stories people tell about
narrowly escaping these kinds of deaths. Many of them talk about how they knew
what was coming and had come to terms with it.

~~~
chimen
You are surely referring to the last moments of their lives and not the
journey from finding out they're going to die until that moment you are
talking about. There's a lot of adrenaline and other chemicals being released
in such situations. I had a friend pass out 1 second before hitting a pillar
with the car (her boyfriend had to pull the wheel and crash into a dog house).
The brain finds ways to protect you from pain and it often shuts down in such
cases when there's no room to contemplate. I think the subconscious kicks
in/takes over.

I was talking about the long wait many have to go through from finding
out...to their final breath. From denial to acceptance might be a long road
that scares me and I'm not sure if every bit of information can be beneficial
or detrimental.

~~~
fapjacks
I have personally been in a few of these moments in my life, when I was
thought that I would be killed. I have never been a hostage on my way to my
own execution, but I have narrowly escaped death in combat a few times when I
thought beforehand that surely I would not make it. There is a lot of
adrenaline, and the human mind definitely employs some tricks to shield us
from realizing our own fate, or at least to stop us from applying much
critical thinking about the situation. Being so close to death is a very base,
very visceral, animal thing. Incidentally, this is closely related to one of
the reasons I grew to feel at peace while fighting and at war -- and the chief
reason I have such a hard time with civilian life afterwards -- and in a way,
I came to enjoy it (I waited a couple of days to post this comment because the
reality of it will shock the conscience of many, but I wanted to be honest).
Not of course the moments where things are going quite badly, but the more
base existence.

That feeling is totally unique, of being there on the edge of life where
everything is so simple, and where nothing else matters, or nothing else seems
to matter very much. From talking to people and hearing stories, I suppose
most people think of family when they're close to death. I didn't so much
think about family as much as I had kind of very simple and straightforward
"aw-shucks" moments of regret about not doing the things I wanted to do in
life before I got into those situations where thought I would be killed.
Incidentally, after my tours, I traveled a lot in order to settle those
regrets and ended up meeting a woman that became my wife. I also created some
very deep and meaningful friendships. I'm kind of getting off track here, but
my original point was that what you've said is true, but at least for my part,
"the long wait" is only happening after the fact. Navigating through the
civilian world has been a really tough experience after all that, specifically
those times where I thought surely I was a dead man. That was something I
didn't expect, "the long wait" coming after everything else.

------
DoreenMichele
_This will sometimes result in clinicians performing painful and pointless
procedures on a dying child as weeping parents stand by, watching their
child’s final moments in horror, having not understood what they were signing
on for._

My father had cancer in his late 60s. He wasn't expected to live. He did live
about 2 more decades. But following his surgery, he spent considerable time in
ICU.

At the same time, another elderly patient spent the last two weeks of their
life there in ICU. They repeatedly _coded_ and had massive intervention.
Doctors routinely did things like drain a gallon of fluid from the lungs,
restart their heart, etc.

My mother was pretty disgusted. She felt the family knew this woman was never
going home again and these torturous treatments were not extending life. They
were merely dragging out her death horrifically because the relatives were not
yet ready to accept it.

In many cases, this is the better answer:

 _...they tell us that attempting resuscitative efforts that are likely to be
futile is not consistent with their values. In these situations, rather than
asking for intubation and chest compressions, parents just want to hold their
child and find meaning in those final moments of contact._

~~~
magicalhippo
My dad had cancer in a lymph node that spread to the lungs, significantly
reducing his lung capacity. After a few years of steady decline, he caught
pneumonia.

After a day of treatment, he knew it was all downhill from there. Doctors said
further treatment would likely make him recover from the pneumonia, but that
could take months, and scar tissue from the pneumonia would reduce his lung
capacity further. Even before the pneumonia he was reliant on oxygen supply at
home just to sit in a chair.

So in the early hours of the second day, he requested they turn off the oxygen
supply. A doctor got called in to ensure he knew what the consequences could
be, which he did, and then they turned off the oxygen.

He passed away peacefully a few hours later.

Painful as it was to lose him, I'm so glad they respected his decision.

~~~
williamdclt
In which country did this happen? This sounds illegal in quite a lot of
countries that I know of

(nothing judgemental in this comment, I'm genuinely curious)

~~~
astura
You're wrong and/or confused, it's _certainly_ not illegal to refuse treatment
in _any_ free country as long as the patient has all their mental facilitates
and there is no danger to public health. Nobody can _force_ you to stay
attached to a machine if you don't want to be.

In fact, preforming medical treatment against someone's expressed will is
assult or battery and could land the doctor in prison.

I think you're confusing voluntarily withdrawing of life sustaining treatment
with physician assisted suicide, they are nowhere near the same thing.

------
darkerside
> “Never forget, if you accompany your patients only until the battle is lost
> and they are dying, if you abandon them at that point and leave them alone,
> you have done only part of your job, and not done it well. Your job is to
> accompany your patients until they are either better or safely on the other
> side.”

Worth reading for this line alone. Beautiful.

~~~
hammock
Do we really get that part wrong, though? There are specialties like hospice
care and anointing of the sick, which accompany patients after "the battle is
lost" and ensure they comfortably and safely make it to "the other side."
These tasks are just done by people other than your oncologist.

~~~
darkerside
It reminds me a bit (perhaps oddly) of technical consulting work. Sure you can
check the box, deliver the letter of the contract, and collect your pay.
There's a difference between that and building what the customer wants, not
what they need; driving end user adoption to make the project successful;
caring about outcomes and satisfying your stakeholders, not just about solving
the technical challenge as it is presented. There are specialist techies who
want nothing to do with half that equation, and don't need to pretend that
they do because they are so valued for the specialized thing at which they are
a truly expert professional. If you're not like that, another way to add value
is by blending technical skills with the other half of that equation.

------
amriksohata
The biggest thing we get wrong is living like we will live forever and
assuming we will never die and therefore never prepare for it whether it be
financially or spiritually

~~~
tw1010
How should one prepare financially for the fact that you're going to die one
day?

~~~
wildleaf
Have money to be independent in your final years so that you can be cared for
appropriately without burdening your family.

~~~
melling
That could be a decade or more. For instance, some people are living longer
because of medical advances. Alzheimer’s might be more of a problem as more
people live into their 80’s, 90’s...

[https://www.livescience.com/59261-alzheimers-deaths-
increase...](https://www.livescience.com/59261-alzheimers-deaths-
increase.html)

~~~
ghostbrainalpha
That's true but it doesn't effect what GP said.

Many of us on HN are in professions where we are able to save enough money to
live without being productive after the age of 65.

But also many of the people reading this will be 50 years old and have the
option to purchase a second (vacation home), or a boat, or a fancy sports car,
OR completely secure their retirement. Many of us will choose one of these
luxury items and hope everything works out rather than saving for a retirement
that could last into our 90's.

~~~
matte_black
And many still might forego those luxury items and instead save for
retirement, only to be dead, buried and forgotten at 71, all the same.

It’s a balance.

Money, Age, Enjoyment. Most can choose two, some can choose all, and some can
choose none.

------
andrewjl
Our culture, and even our language, fails us by treating death as a given and
as something we passively accept.

There are many avenues of research to achieve radical life extension, and it's
a worthy thing to pursue.

~~~
techman9
That's true in the abstract sense, but this article primarily deals with the
weeks, days, and hours immediately preceding death.

------
ssivark
A truly cathartic read. This soulful article's understanding of the process
and trauma of bereavement touched me profoundly. Such empathy is rare in
modern bureaucracy -- something about doing things at scale numbs us to the
emotions of individuals.

For another keen perspective on how doctors deal with terminal illness in
personal life, as humans, rather than as professionals, see this:
[http://www.saturdayeveningpost.com/2013/03/06/in-the-
magazin...](http://www.saturdayeveningpost.com/2013/03/06/in-the-
magazine/health-in-the-magazine/how-doctors-die.html)

------
reasonattlm
The biggest thing? Since arguably sometime in the 1930s the technological
capacity has existed to store at least the brains of dead individuals at
liquid nitrogen temperatures indefinitely, waiting on a future that can
restore them. In a different, better world, the funerary industry was swept
aside by mass cryopreservation, and the vaults of those who would one day live
again would be now be vast. The biggest thing we get wrong is that we continue
to equate clinical death to oblivion, rather than it being only the second
worst thing that can happen to you, and acting accordingly.

~~~
eitland
If anybody wonders why this is currently downvoted it might be because it
shows a huge lack of understanding of the real issues here. Let me mention a
couple:

Who decides people living now are more worthy of living than future
generations?

Who decides who will live forever?

~~~
Smaug123
There's not necessarily a "who is more worthy of living" judgment here. Future
generations are free to turn off the cooling mechanisms which suspend the
bodies or heads of the dying, if they deem it important to have the resources
now. In the meantime, it doesn't take _that_ many resources to suspend a head;
and the burden would become less if suspension became common enough practice
that the "extremely expensive, will either fail or make the rest of your life
a hell" procedures were phased out and those resources freed up.

The problem I have with your sentences is that they prove too much. They can
easily be read, for instance, as advocating that it might be worth abandoning
medical science.

------
eecc
I struggle to find enough words of gratitude for people like the author. The
amount of trauma and stress they endure to do someone else some good is
something I cannot even imagine myself doing.

------
rayalez
Relevant article from Slate Star Codex - Who by very slow decay:

[http://slatestarcodex.com/2013/07/17/who-by-very-slow-
decay/](http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/)

One of the most impactful things I've read in my life.

~~~
andrewjl
With sufficient time and resources, death can be prevented.

[https://nickbostrom.com/fable/dragon.html](https://nickbostrom.com/fable/dragon.html)

~~~
mythrwy
I think death can never be prevented. Just made less probable. Or forestalled.
Even the universe dies at some point and I don't see anything outliving that.

~~~
knodi123
That's just semantic confusion. He meant prevention of senescence.

------
temp-dude-87844
There are several things we -- as a broad generalization over many societies
-- get wrong about dying, and this article illustrates one of them in the
medical, caregiver sense.

While there are several contributing factors, like an activist reading of the
Hippocratic Oath and fear for malpractice claims against the caregivers, this
reckoning is consistent with the value system of many societies that assumes
that one's informed choices must always tilt towards their continued life, and
any feelings to the contrary are morally corrupt or simply misinformed, and
therefore don't confer valid consent.

It's impossible to separate analyses of one's own medical death without
considering wishes of one's death in the general case. Modern societies tend
to make discussing death taboo, not just because it's an uncomfortable topic
to grapple with, but also because people who can control the terms of their
own exit have an opportunity to do great harm in ways that can't be
disincentivized by punishment. It's no accident that religions attempt to
rectify this loophole by ensuring that mortal deeds will determine one's fate
after death.

------
oldandtired
We live in a world where death is inevitable. All of our systems wear out.
Within the various cultures across the globe, death is viewed in very
different lights.

Sometimes we can do something about it, sometimes we can't. Death can, in some
cases, be quick and painless and in others slow and painful. How an individual
handles this is very much up to that individual's internal being. What doesn't
help is other people acting and living their lives in such a manner that
brings hopelessness to the individual affected.

The medical fraternity is one group that regularly hides death from themselves
and the patients and their families. Yet they will also regularly kill those
who they feel have nothing left to live for and without regard to those
individuals themselves.

When I was at university all those decades ago, the medical students of the
time had courses in handling death - how to deal with death themselves and how
to deal with patients who are dying and how to deal with families so affected.

It didn't seem to help those medical students.

My own wife has survived four different kinds of cancers. The treatments she
has undergone over the years has adversely affected her body and she suffers
much now from those treatments from the past. We have been blessed that we are
together and that we have seen and are seeing our children grow and our
grandchildren grow.

Just by living, each of us will face both good and bad. How we live each day
is predicated on what gives us hope and what we see for the future. If there
is no hope then death is a dark time ahead.

For me and mine, death, when it comes, will be a doorway into a better,
greater future in the glorious presence of my God and Saviour. Till that time,
we are here to live as examples to those around us with hope, joy and love.

------
nulbyte
I'm sure this is interesting, but if I can't read a simple article without
enabling cookies, the site isn't worth my time.

~~~
agumonkey
as usual pf is your friend:

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