
I Lied When I Said We Did Everything We Could - bookofjoe
https://www.doximity.com/doc_news/v2/entries/18293779
======
DoreenMichele
I have an incurable condition and spent about 3.5 months bedridden before
finally getting a proper diagnosis. My condition has a significant respiratory
component.

While bedridden, I hallucinated wordless conversations with the Grim Reaper.
One day, in the landscape of my mind, he rode up to me on a black steed,
leaned down and peered into my face, then swirled around and rode off. I ran
after him screaming "Don't leave me here! Take me with you!"

That was the last time the Grim Reaper came to see me. With his departure, I
knew I would live.

I wasn't happy about it. I knew I faced a long, hard, torturous recovery.
Death would have been kinder.

At some point in recent years, I found myself in a group chat. Someone joined.
He was a physician who had had a patient die on him that day.

It was a case of 'agreeing to pull the plug.' The man didn't want heroic
measures. He knew he was dying.

The physician described this man's final hour and how his breathing slowed,
then stopped. It was weirdly cathartic. A lot of stress went out of me and
never came back.

~~~
waltwalther
Beautifully written. Thank you for sharing. I hope you are well.

~~~
DoreenMichele
_Beautifully written._

Thank you. Most of my earned income comes from writing. So I've had a bit of
practice.

 _I hope you are well._

Mostly, yes. Everything but my finances seems to be in reasonable shape, all
things considered.

------
jungletime
My Dad had a cardiac arrest at 70. And consequently deprived of oxygen for 10+
minutes. My Mom did all she could with chest pumps waiting for paramedics.
This kept him alive so he made it to hospital. When I saw my Dad, a few hours
later, his eyes were glazed over, pupils dilated, unable to make sort of
recognizable sound, just soft nightmarish screams, and stretching out his arms
like he wanted to get away.

I thought surely his brain is gone, and that he will be in some sort of
vegetative state for the rest of his life, if he lives at all. I was already
convinced that was it for him. If at that point doctor asked me weather to
"pull the plug", I probably would have agreed.

I couldn't be more wrong. Not only did he live. No brain damage at all. 4
years later he's still around. Today he went on a bike ride.

I'm not sure what the odds were for him. The Nurse did tell us that with every
hour he is alive his chances kept improving. Brain damage was still a very
large risk. But they lowered his temperature, with an ice blanker, to help
with this.

Just keep in mind sometimes people can have remarkable recoveries too,
especially with modern technology.

~~~
barking
As a counter story I once attended a talk given by an A&E consultant who was a
bit dismissive of the trend for putting in defibrillators everywhere, such as
at sports stadiums. He said that by the time someone had rushed to wherever
the device was kept, retrieved and used it, it was likely that, at best, you'd
be looking at the casualty surviving in a persistent vegetative state.
Incidentally, someone asked about having oxygen supply and mask available for
people who've collapsed. By all means, he said. That will make everyone feel
better.The helpers because they are doing something, the victim because
something is being done for them but other than that, it's useless.

~~~
JshWright
The opinion of that A&E "consultant" is unsupported by the available evidence.
Public access defibrillation is clearly linked to better survival to discharge
rates (i.e. people actually leaving the hospital).

EDIT: As an anecdotal example, I know of at least one person who is walking
around today because of a defibrillator at a stadium. 17 year old male took a
lacrosse ball to the chest, instantly triggering ventricular fibrillation[1].
The athletic trainer used an AED from the seating area and his heart was
beating again before the ambulance arrived.

[1]:
[https://en.wikipedia.org/wiki/Commotio_cordis](https://en.wikipedia.org/wiki/Commotio_cordis)

~~~
barking
No he was a consultant, without the "", which means that he had a medical
degree plus postgraduate qualifications and about 10 years in hospital
training positions usually including experience in different countries. At
least that's the norm here.

------
forgotpwagain
On the topic of describing the events of the code (cardiopulmonary
resuscitation) in great detail, there have been studies showing that bringing
the family into the room during a code leads to decreased PTSD for the family.

From a study in the New England Journal of Medicine: "Conclusions: Family
presence during CPR was associated with positive results on psychological
variables and did not interfere with medical efforts, increase stress in the
health care team, or result in medicolegal conflicts."

Full study:
[https://www.nejm.org/doi/full/10.1056/NEJMoa1203366](https://www.nejm.org/doi/full/10.1056/NEJMoa1203366)

DOI for Sci-Hub: DOI: 10.1056/NEJMoa1203366

~~~
boynamedsue
I was in the room when my dad coded. I watched everything. I saw them manually
providing oxygen by "bagging" him. I answered questions about DNR. I watched
them place eyedrops in to verify death. I walked with his body down to the
morgue.

I am thankful by the fact that I was there. But I am tormented by it too.

~~~
fapjacks
The first time I saw the death of someone close to me, I was tormented, too,
by my own sense of the fragility of life. But especially my own life. I was
afraid for myself, and tormented by the certitude of my own terminal
existence, the fear amplified by the urgency of my circumstances and
especially after witnessing (or participating in) the subsequent deaths of yet
more close friends. But after some years of therapy (on a couch with a
professional but also especially on drugs in the forest with amateurs), I've
come to terms with it, and in fact I get some comfort out of the inevitability
of my own death. It's one of the few things we can count on without any doubt,
and being able to predict _anything_ about life is a blessing. And actually,
instead of being tormented by it, I'm grateful for the experience. I don't
take much for granted, and I'm really thankful for every day that I wake up. I
genuinely believe that I was given the greatest gift that I could ever
receive. And even though it may seem weird to say -- and given that I'm
interpreting your words in the right way, and also if you'll pardon my
presumption for offering -- I honestly believe that you've been given the very
same gift, but that you only don't know how to receive it just yet.

~~~
anongraddebt
There is a dual or two-aspect irony at the center of modern culture in the
West. The ironies - both negative - are the following:

(1) An increasing, intentional aversion to one's own death and the death of
others. Instead of living life in full awareness that you and those you care
about are all dying (in some sense), our culture runs from the prospect of
death through various forms of distraction, etc. This adolescent attitude
weirdly breeds a callousness of heart. If death isn't something you ever think
about, then does it really have meaning? If you always evade the fear instead
of confronting it head-on, then there is no real loss or pain or grief. There
is less joy precisely because of this evasion, but at least you've numbed
yourself, right?

(2) The second irony is that even though this culture runs from the thought of
death, it is also increasingly a culture of death in some regards. A culture
of death is one where individual and collective actions that typically lead to
the de-stabilization, weakening, or implosion of the society which celebrates
them... are celebrated. This can be seen across the West, regardless of one's
ideological slant. Cultural/societal death and decay remain invariant across
ideological groups (that is, they have no privileged locus).

~~~
fapjacks
Facing one's own mortality carries a tacit knowledge of death that can't be
got by other means. It's one thing to think about it intellectually, to sort
of turn it around in your mind. But it doesn't give you a _sense_ of death. I
can tell from your treatment of it that you haven't. And that you hold up this
sort of deeply personal interaction as a demonstration of some problems you
believe you've identified with an entire culture, I think shows of a different
kind of callousness of heart.

~~~
saiya-jin
Hold your horses a bit, you can't make such blank statements about somebody
who you don't know at all. People are so vastly different and unique inside
that what works for you and defines you might have little to no meaning to
next guy. What you consider an important marker of some aspect of personality
might be lacking elsewhere, yet the aspect itself might be very well there.

Psychedelic drugs can give you perspective on, well almost everything that
nothing else in western culture comes even close to. Or might not, as said we
are so unique that no blanket statement can express the truth.

As for me, doing some rather extreme sports puts me to situation with imminent
fear of death (ie climbing hundreds of meters above ground, used to have
strong vertigo all my life), that one becomes well-aware and content with it.
Maybe not every climber, but definitely me.

If I experience my parents/life partner passing in my hands, it will be a
tough moment. But I will manage it, no doubt there. Same goes for rest of
close people. If you expose yourself to extremes, you become familiar with how
you react to them, and also in managing them.

~~~
fapjacks
I agree with what you've said about extremities of life experience, and I
agree that people fundamentally experience life differently from one another.
As an exception among most of my peers, I support the notion that someone
hardly exposed to danger could become affected by e.g. PTSD. But that being
said, I can assure you that there is nothing that comes close to the
experience of combat, and nothing-er still that comes close to experiencing it
continuously across years. It's not like being in the same room when grandpa
passes away. It's being consumed by human terminality, every conceivable
permutation of mortal extreme. Surely you've read about the continual shelling
of the trenches, and at least intellectually understood there's a difference.
But even then, I'm sure there have been folks who, through their own relative
existence and differential experience, have stumbled high on mushrooms on the
same tacit wisdoms as those realized by ascetic monks who spend their entire
lives on the edge of existential crises. I'm totally sure it happens, but it
doesn't happen often. I'm surprised all the time, but just based on his reply,
I made an educated guess, which turned out to be right. I don't have children,
but I know enough people with kids to understand that having kids flips a bit
in the human brain. It's an experience with a tacit component that can't be
got by other means, though I'm sure someone's been there somehow that didn't
involve creating a child. There are exceptions to every rule, but they are
_exceptions_.

------
nlh
I lost my dad recently (he was 84 and lived a wonderful and healthy life,
which I consider a huge win for him).

He had a terribly bad stroke that left him very much alive, but without the
ability to speak, read, or write. He was a professional book reviewer and
writer for much of his life, and continued to read, write, and think with
voracity up until the minute before his stroke (he was setting up his Series 4
Apple Watch at his desk when the stroke hit ;) Not an ounce of cognitive
decline into his 80s, which we were all thankful for.

He spent about 10 days in the hospital after the stroke. He was mostly lucid,
glad to have the family around (thrilled to have his grandson there), but
clearly frustrated that he literally could not say a word to us. At one point
I handed him his iPad Pro so he could, perhaps, type a bit, but he looked at
me and shrugged when the keyboard popped up. That part sucked.

He developed a heart arrhythmia and pretty severe pneumonia very quickly, and
after a week or so of minimal cognitive improvement, the attending sat me,
mom, and my sister in a room to discuss plans. He explained that, of course,
they could and would do the "everything we can" bit if we wanted, but that
dad's Living Will (*note: highly recommended for everyone to get one) was
clear that if he couldn't live a comfortable life after this sort of
debilitating event, he wanted only palliative care. The attending also
explained that there was "a 0% chance he'll regain cognitive abilities at this
age to live anything near a normal life."

It took us less than a minute to all vehemently agree that the right decision
would be to move immediately to palliative care, to let things take their
course, and let him spend his last hours/days in peace. The attending told us
he was shocked at how easily we agreed -- that most families have a hard time
letting go and that he often has a difficult job trying to balance the need to
be pragmatic with the wishes of families who might not be in a rational state
of mind. He actually thanked us for being so level-headed. Dad died about 2
days later in absolute peace, with family around, a warm and wonderful nursing
staff taking care of him, and honestly, I wouldn't have had it any other way
given the circumstances.

I share this not to gloat or preach that our family is somehow better than
those who choose to request "full code", but as an anecdote to let people know
that it's ok to let your loved ones go peacefully. Even in the months since
this happened, none of us have even a single ounce of regret about the way
things were handled.

~~~
belorn
A very close relative of mine got a similar massive stroke when he was around
60 that also hit the language center. Even if I was quite young I remember
that moment of frustration in the hospital when when he could not talk with
either of us. The doctor explained he would unlikely survive the night, and
even if he did he would not be able to leave the hospital bed. His daughter
did the same however what the person in this article did and demanded full
treatment including surgery which the doctor advised against. Against very
unlikely odds he recovered. A few years later he was biking to the bank and
climbing the cherry tree on the yard. His ability to make himself understood
was extremely limited where basically only his daughter sometimes understood
him, through writing and reading did very slowly come back to a minor degree
many years later. He died less than a year ago at age 93.

I writing this not inject doubt in your decision, and there are many
differences, but I would like to share how impossible the decision can be. I
read articles like this and acknowledge the massive amount of unnecessary pain
many has to go through in their last days, but if I end up having to make a
similar decision I don't know what I would do or think.

~~~
silencio
The decision is easier when you have conversations and put wishes in writing
before they are necessary. And update them as needed.

My dad has ESRD and we've had some conversations about what he would want at
the end. Many of the potential issues we've discussed involve getting 2nd+
opinions if necessary... but he also makes it clear (and I agree with him)
that at some point the treatment and recovery process itself might not be
worth it for an unknown recovery for him.

I think this communication respects that this is a difficult decision, and
I've come to the conclusion that decisions can be reached that may not be the
"best" objective decision (e.g surviving another 33 years) but it is a
decision that the person supports, so that you as a survivor can be at peace
with it too. So like, if my dad were in a situation similar to your relative -
I already know that he would feel that the numerous procedures and years of
recovery outweigh 33 more years of life. I would not seek full treatment.
Knowing this makes me at peace with anything that can happen, more than
anything else we could do.

I was inspired largely by Atul Gawande's book "Being Mortal" \- where he talks
about and discusses ways that we can figure out how to live our life at the
end, rather than be worried about death.

~~~
belorn
(sorry for delayed reply, the comment brought back quite a few things).

Yes. Having the conversation before really helps. Not only is it said to put
less stress on those close to oneself, but it put things in a bit larger
perspective. A 2nd+ opinion is also critical, and who know what one would have
said in our case. I strongly hope that the medical science is today better
than 30 years ago so that the advice the doctors gives are today more
accurate.

For myself I have thought a few times about what I would want, but have not
reached a decision. The article is a strong reminder how badly it can and in
many cases will happen when someone demand full treatment.

------
et2o
Wonderful article.

This is a not-uncommon situation in end of life care. It's difficult for a
family to accept a tragedy like this, a loved young woman dying in the prime
of her life from something untreatable. The families often are in almost some
sort of denial (understandably, I'm saying that without judgment) and demand
that everything be tried, even when it's futile and ends up making the
situation worse like in this case. Medical community has been working on
trying to change this for years, but ultimately it seems to me like it's a
cultural thing as well.

~~~
jrnichols
> seems to me like it's a cultural thing as well.

This is true. I think that it's also a religious thing as well, and almost
Christians. Other religions are more accepting of death, but Christianity has
taught many to sincerely believe that Jesus himself would step into the room
and heal their loved one, therefore every attempt must be made to save them.

This is something I've seen first hand in my years as a Paramedic. Patients
with absolutely zero quality of life, yet remain a full code, in a nursing
home. Family hasn't visited them in months (maybe coming 2-3 times a year
tops) but there's evidence of a direct deposited social security or retirement
check going somewhere. It's sad and I wish that we had a huge cultural shift
regarding end of life care.

~~~
hnuser355
I believe this might be more prominent among uneducated folks of (at least in
my neck of the woods) non-mainline American Protestant denominations. At least
the doctors of the Catholic Church will specifically talk about preparation
for death, dying well (also mentioned by Fred Rogers in the documentary I saw
about him), etc.

~~~
ljm
More simply, it's not easy to let go of someone you love and say goodbye to
them.

It's not fair to the person ready to die, but there's a lot of pressure put on
people (through TV, movies, friends) to fight for those you love, even when
they don't want you to.

------
vichu
I recommend this article for another essay on this topic:
[https://www.zocalopublicsquare.org/2011/11/30/how-doctors-
di...](https://www.zocalopublicsquare.org/2011/11/30/how-doctors-
die/ideas/nexus/)

It really boils down to quality over quantity. After all, I'm sure most would
choose to die comfortably in their bed after a week rather than in a few
months all while in excruciating pain.

~~~
cs02rm0
I'm not so sure.

I think I'd lean more towards quantity if it were a choice - my kids are very
young though so right now I just want to know them for as long as I can.

~~~
cc81
It is a difficult question for sure but in some cases your choice is between
heavy medication in a hospital that makes you unable to spend quality time
with your family. While the other option might mean you would die in 2 months
instead of 6 months it might also mean that during those 2 months you would
have the strength to play with your kids.

------
scarejunba
There is a current trend to enable this peaceful dying and I'm a huge fan of
allowing people to have the right to die.

But absent cost as a factor (I don't want to blow all my savings on myself -
rather leave them to wife+kids), pain isn't a reason for me to go.

My early years were in the rural Third World where I had a whole bunch of
near-fatal diseases as a young child and (unrelatedly) nearly committed
suicide when I was a late teen, early adult.

The one thing I'd really like is a "resuscitate at all costs" marker. Imagine
if there were a consent token marked upon your body, written into your
bloodstream. Medical staff just test it and it says "let this man die", "put
this woman through all pain so that she may have a few more days", or "kill
this person actively if this happens".

There is pain so unbearable I want to quit. But I was wrong so many times in
the past. Put me through it again and I'll want to quit but if I make it I'll
be glad I failed to.

Force me to live. Let me say I must be forced.

------
euske
This reminds me of this Planet Money episode about a town, where people
casually talk about their terminal treatments and death. It turned out that
most people chose a rather natural death when the choices are given. It was
originally started by a nurse who wanted to reduce the burden of a family, but
the town ended up with the lowest Medicare spending because of this community
custom. It was a very thought provoking.

[https://www.npr.org/sections/money/2014/02/28/283444163/epis...](https://www.npr.org/sections/money/2014/02/28/283444163/episode-521-the-
town-that-loves-death)

------
colechristensen
Two sides show up here, fear and avoidance of pain and suffering :: fear and
avoidance of death.

Most of the comments here advocate accepting death to minimize pain, but it
doesn't have to be one or the other. With the right mindset you can accept
both gracefully.

A life in pain can be worth living without running towards or away from death.

~~~
blotter_paper
Fear and avoidance of worthlessness.

~~~
colechristensen
When you really drill down everything is pointless besides the just being
conscious.

~~~
rabidrat
Even that is a mixed bag most days.

------
bredren
My grandfather had a do not resuscitate legal order. However, they did not
have that at the hospital at the time he had his final trip to the ER.

As a result the man went through a failed code attempt he did not want.

So It is pretty rough to read this article, because It describes the sad
experience for the patient in such real detail.

~~~
op00to
This happened to both my parents. In my dad's case, they failed and he died.
In my mom's case, they succeeded in saving her a few times even after she was
brain dead. She had a DNR, but it wasn't an actual medical order from a
doctor, but a legal document, so they ignored it. No fucking clue why.

~~~
bredren
I’m not sure but I suspect there is a big insurance billing associates with
performance of a code.

------
BenMorganIO
I remember being 10 and seeing my dog Moglee crawl up a 150m driveway to see
his family after being hit by a truck. I remember the blood from his mouth and
how much he wanted to be with his family. It was 2 days after Christmas.

Recently my old cat Jackie passed away. The moment I saw her not pee in the
litter box but instead leave tiny droplets on the floor, I knew it was time to
start planning for what the next few hours were going to be like. She was
deaf, blind, failed kidney, two times underweight, and a tumor in her mouth.
Her inability to eat or relieve herself had peaked. In the next four hours she
was euthanized.

There's many instances throughout life that you know there's nothing you can
do.

This doctor was right, your everything isn't always to spend moments with
doctors. Sometimes it's to make the final moments worth it. I wasn't with
Moglee. No one was. I was with Jackie, but the vet talked me out of getting
antibiotics so she could eat instead of starving to death.

------
andrewl
The description of "popping" the ribs during CPR reminded me of this medical
article in "comic strip" form:

[https://annals.org/aim/fullarticle/2217632/annals-graphic-
me...](https://annals.org/aim/fullarticle/2217632/annals-graphic-medicine-
betty-p)

Click on each panel to get a larger version.

~~~
JshWright
"Popping" is a much better description than "breaking". In most cases the ribs
aren't actually breaking, their dislocating and the cartilage that attaches
them to the sternum is tearing.

------
Gaelan
If anyone else isn’t familiar with the term “code”:
[https://en.wikipedia.org/wiki/Hospital_emergency_codes#Codes](https://en.wikipedia.org/wiki/Hospital_emergency_codes#Codes)

------
newmac
I am married to a ICU physician. Neurological Critical Care is their ultimate
specialty, but they practice in all parts of the critical care system:
Emergency->ICU/Neuro ICU.

It's a very emotionally and mentally taxing job. Basically nothing that
arrives under your care is good news. Often you know the potential outcomes
before anyone else, including the other physicians who are sending someone in
to your care. A large portion of the job is telling other specialities "No",
either because they haven't done their job or because the case is "non
survivable". This is necessary because you have a very limited number of beds
in an ICU and if you fill one, someone else might very well die while waiting
to be prioritized in. Because of all that, you are almost never the 'hero' in
the story. The very best you hope for is that people acknowledge that you were
able to keep someone alive long enough to get the treatment they ultimately
need, or you were able to stabilize them enough to move to a step-down or
palliative care department.

Then there are the families. The vast majority seem (based on my external
observation) seem to grasp what is happening and make reasonable decisions.
There are some amount of them however, who are completely ignorant of the pain
and suffering they are imposing on their loved one. Over time it seems like a
young ICU physician goes from seeing these families as ill-informed and
possibly well meaning to seeing them as selfish and uncaring.

Externally I would say that it seems like groupthink is almost always a
component of the decision making process. In a setting where just a single
partner or other person is making a decision, they have a lot of empathy, if
it is a family or group, they have empathy for eachother, but not for the
patient. At least not in the way they think they do.

I'm not sure where I am going with this other than to say that as an observer
to this almost every day, this article really just scratches the surface of
this issue. I shared it with my partner and another ICU physician and their
reaction was "that's minor leagues after a while, but your first few do always
stick with you" to "I don't know why I even do this job."

Current example: 87 year old patient, already has metastatic cancer, had a
stroke and is being "maintained" entirely by machinery. The family "Doctor,
you have to do everything, we want her to make it to her 90th birthday"

------
Pxtl
I don't have asthma. My doctor says I have something milder than asthma. I
have a puffer, and if you put me in the same room as a rabbit or guinea pig I
will be struggling to breathe in about 20 minutes. I've lied awake at night
coughing and hearing the accordion-like chorus of my wheezing windpipe. But
it's not asthma. It has, however, made me very aware of what it feels like
when lungs are not working well.

Nothing scares me worse than death, but idea of my lungs slowly giving out
over years is a pretty damned close second.

~~~
cableshaft
You probably do have asthma. I'm a lifelong asthmatic and what you're
describing is me on a rare bad day (it didn't used to be as rare as a kid, but
is more rare for me in adulthood). You should probably get a second opinion,
and an inhaler, peak flow meter, and a nebulizer as soon as you can.

I got worried about life expectancy for asthmatics recently, and it seems
like, generally speaking, as long as it's well treated, the life expectancy is
about the same as a non-asthmatic on average. You have to be careful when you
have a severe asthma attack though, those can potentially kill you if you
don't go to ER.

Here's an article from the CDC that includes a page that gives the breakdown
of deaths and demographic breakdowns of it:

[https://www.cdc.gov/asthma/pdfs/asthma_facts_program_grantee...](https://www.cdc.gov/asthma/pdfs/asthma_facts_program_grantees.pdf)

If you're actively wheezing at night, something is wrong and you need to get
treated for it. I only have that happen to me once or twice a year, usually,
and whenever that happens I'm taking medication to help combat it.

~~~
Pxtl
My attacks are very rare - basically only brought on by extreme spring
cleaning without a dust mask (dust allergies), and I have a corticosteroid
inhaler that I take through allergy season.

Either way, I'll have another conversation with my doctor. My understanding
was that asthma was generally a lifelong thing - my breathing was fine until I
was around 30.

~~~
pygy_
There are two components to asthma: bronchial hyper-reactivity, and trigger
factors. Trigger factors comprise allergies, physical effort, cold air,
depending on the person.

Allergies often get better with age, but their exact pathophysiology is not
well understood.

------
scotty79
I think I would have said "Yes. She lived as long as it was physically
possible."

If you have a loved one in this last stage care you can't have reasonable
goals because nothing is reasonable anymore. Instead you measure success with
time. The longer loved one 'lives' the better everyone did. It's irrational
and harmful for everyone involved but that's how it is. That was actually what
the person was asking when he ask if they did everything they could. Could she
live longer?

My loved one today told me she would like to die on the operating table. She
already had 4 head surgeries to remove her brain tumors. Last two last year
left her physically disabled. She might need another one this year. The day
after tomorrow we are doing her next MRI.

------
caprese
What is "the code" in this context? The article masterfully reveals details
slowly over time, but I don't want to lean on my own understanding of what
that means.

~~~
lukeplato
>"I wanted to tell him that if we had done everything we could she would have
gone to the palliative unit or home on hospice."

I'm confused by this part. It almost implies that the code also involved
intentionally not saving her

~~~
thefifthsetpin
They did all that they could to save her from death, but in the author's
opinion that's not what they should have been saving her from.

As an example, they intentionally didn't save her from the agony of receiving
CPR.

~~~
metildaa
CPR is brutal, both for the person receiving it and the person providing it.
You crack the person's ribs and end up mushifying their chest if you persist
in doing CPR too long.

The other thing is without an AED (a defibrillator) the success rate of CPR is
quite low, one physician I know equated it to buying time for the brain, as he
had never seen CPR alone bring someone back.

~~~
licebmi__at__
As far as I know (my wife is an emergency physician), despite what the name
suggest, CPR is not really for "bringing back". Is a technique to keep the
blood flowing so the brain doesn't suffer damage until other techniques are
applied. Also, as she explained to me, the defibrillator is only used on
certain kind of arrests, it can actually make things worse on others.

~~~
JshWright
CPR circulates blood to the oxygen and brain, keeping it going long enough for
the heart to (maybe) be restarted.

For the first few minutes after someone's heart stops beating, it probably
hasn't actually stopped, it is just beating in a chaotic way that isn't
actually moving any blood (this is known as "ventricular fibrillation, hence
the "defibrillator"). The electrical discharge of the defibrillator is like
someone standing up in a loud room and blowing an air horn. It shuts everyone
up for a second, and hopefully the heart's normal "pacemaker" can take back
over.

There are some medications that can be given to "strengthen" that pacemaker,
and to make the rest of the heart a bit less "twitchy" (and therefore less
likely to go back into a lethal arrhythmia).

There is a related arrhythmia known as ventricular tachycardia where the heart
is beating too quickly to move any blood (and the beating is being triggered
by random cells in the heart, not be the heart's intrinsic pacemaker).

If someone is unresponsive and doesn't appear to be breathing, high quality
CPR and early defibrillation are what will help them. If you have an AED, put
it on them and follow the prompts it gives. And AED will not do anything that
would make the patient's condition worse (to hurt someone with a
defibrillator, you need to be using a manually controlled one).

~~~
JshWright
s/blood to the oxygen and brain/blood (and therefore oxygen) to the heart and
brain/

That's what I get for late night commenting...

------
caprese
> “You all did everything you could, didn’t you?” he asked hopefully.

> I wanted to tell him no. I wanted to tell him that if we had done everything
> we could she would have ...

I struggle with things like this. Its like I want to answer accurately, but
then have to consciously remember the culture and consequences. Other people
are so natural at this

~~~
mindslight
> _I want to answer accurately, but then have to consciously remember the
> culture and consequences. Other people are so natural at this_

(elsewhere)

> _I had seen this person once a month obviously deteriorating in line with
> what every prognosis and statistic would say... it was a spot on analysis_

IMHO these two are inextricably linked. Most people want to live in their own
emotion-mediated reality. By not innately editing your own thoughts based on
their emotional implications, you're able to arrive at more correct (but
inconvenient) conclusions. But everyone else still has to take the slow road.

And yes, it's very hard to get doctors to break out of that mode when
communicating. The vast majority of people they see _need_ that mode, and it's
very hard to directly convey that you are non-medical but still highly
technical.

~~~
stordoff
It's necessary because people have very different reactions. I remember when
my doctor accidentally referred to my test results as a brain tumour (rather
that the less immediately concerning to the layperson benign growth or
glioma). I was thinking it's a growth that hasn't changed for five years and
is barely visible on a contrast MRI (small enough that one of the MRIs
reported that it wasn't even there) - it's nothing to worry about, but I can
could tell that my mother was panicked. You have to convey the meaning and
consequences, even if it's technically slightly inaccurate or imprecise -
sometimes the technically correct answer leads to the wrong interpretation (as
to treatment/prognosis), in part due to the emotional baggage it carries.

------
village-idiot
The interesting thing to me is that doctors die very differently from the rest
of us. They’re far more likely to setup structures to avoid coding later in
their life or when they’re dying.

~~~
sb8244
I'm really curious about this, do you have more about it? It's almost like
"what is the best way to go?" and people that are around it all day long
probably have a decent idea of what they want

~~~
et2o
One article about it: "How doctor's die"

[https://www.rd.com/health/conditions/how-doctors-choose-
to-d...](https://www.rd.com/health/conditions/how-doctors-choose-to-die/)

------
TazeTSchnitzel
This reminds me of the Charlie Gard case, and cases like it that seem to
happen every year or so, where parents spend months fighting pointlessly in
the courts to delay the withdrawal of life support for their already-beyond-
saving child. It's distressing every time.

------
bellerose
This article reinforces my view even more. We as a society needs to allow
people to end their life in a medical environment and only if they're capable
of making the decision on their own in a rational manner. I've witnessed
horrible situations where the life is not going to improve and is intolerable
for the victim who wants an exit even if it means death. Why do we allow our
own selfish desires to have these people continue in pain and when the other
person wants death.

~~~
dstick
Agreed. Both at the end of a life, and the start of one. The rationale around
abortion tends to follow the same warped logic in my experience :)

The subjects are very emotional ofcourse, which makes doing “the right thing”
extra hard in the best of circumstances.

~~~
pbhjpbhj
They're very different, the parent talks about "when the patient wants death".

------
setquk
Well that was depressing. My wife has sarcoidosis.

However while depressing it's gloriously mind opening and motivating to do
some quality stuff.

------
djidnedhxunddbd
We had the exact opposite problem with doctors. My mother was near-
unconscious, suffering intensely and we wanted it to end. The doctors could
not and would not give her a quick exit. We finally got a family friend doctor
to prescribe fentanyl and we administered all the patches at once and she died
within 12 hours.

------
lights_out

      Turn the light's out 
      when you're leaving.
    
      I want to 
      watch the car park empty.
    
      It's easy, 
      when they're strangers.
    
      To wave goodbye.

~~~
will_pseudonym
FYI for those who are wondering, these are lyrics from the song "Lights Out"
by Broadcast.

[https://www.youtube.com/watch?v=aRUO411-vJ4](https://www.youtube.com/watch?v=aRUO411-vJ4)
(audio of the track)
[https://en.wikipedia.org/wiki/Work_and_Non_Work](https://en.wikipedia.org/wiki/Work_and_Non_Work)
(album it appears on)

------
fencepost
"Everything we could" [and more than we should]

I can't help but wonder if there was anyone with medical training acting as a
patient advocate in this and similar situations.

~~~
epmaybe
Doctors can undergo special training in 'palliative care'. These docs have a
pretty broad spectrum in terms of when they become involved, but from my own
experience they've been pretty good at being patient/family advocates to
primary care teams. They should ideally get involved at the beginning of any
chronic illness, to discuss goals of care regularly, and provide patients and
families with resources for end of life care (e.g. hospice, home hospice,
etc).

This is not the best explanation, but hopefully it brings you and other
readers awareness of this growing specialty.

~~~
mikecsh
Palliative care is an incredible specialty. Something I wish more patients
understood is that palliative care is not just end of life care. Their remit
is the alleviation of symptoms and pain at _any_ stage of a life limiting
illness. In the UK many people consider palliative care to be synonymous with
end of life care for cancer patients and are unwilling to be referred to them.
This can lead to unnecessary suffering. Perhaps a re-brand is in order.. :/

------
guhcampos
This. This is messed up.

Much of our medicine feels like it's not meant for the patient, but for the
people around the patient. We struggle to let the person go, regardless of
their own - often voiceless - suffering.

We all feel pain. We all fear loss. Whose choice should it be to live or to
die?

~~~
matt-attack
Could it be an extension of the perverse concept our society reinforces
throughout life, that: suicide is illegal.

I feel that one rule ingrains in all citizens a notion that each of us does
not have free agency over our own body. That someone else’s decision trumps
our own regarding our own body.

I claim this is a perverse notion and the that feelings of the family in this
article are a mere extension of this pervasive philosophy.

~~~
chii
it stems from love. Nobody can truly accept their loved ones dying.

------
ggm
Maybe they did lie, but the core point is, did they do everything they felt
they _should_ ?

Arguably no: they should have stopped, reviewed, and helped her and the family
decide to withdraw treatment and die with some personal dignity, but the time
for that was far earlier.

Having had two in-laws die with medical staff disrespecting their end-of-life
issues (in different ways) I feel quite strongly the 'do no harm' myth is
being a bit over-extended. At the end, prolonging life does harm. Withdrawing
anti-anxiety drugs does harm. allowing a surgeon to go ahead and risk a
catastrophic stroke and loss of identity does harm.

~~~
tyrust
It sounds like they did do that though:

> He had spoken with her family innumerable times explaining her dismal
> prognosis, the virtues of palliation and hospice care, and the harms of
> overtreatment. Like many families, anything other than a “full code” meant
> giving up on their loved one. In the midst of tragedy, changing that
> mindset, like the code itself, was often an exercise in futility.

~~~
ggm
Yes. He tried, and I like that. The system needs to change

------
sb8244
I spent today in the hospital watching my grandmother come to terms that she
is 99% likely on her death bed. I am happy that she chose a DNR over going out
like this article.

I've thought a lot about death this weekend, as I knew what I was going into
before I got here. The only real conclusion that I have is that I'd like to
feel like I'm always doing my best to satisfy what I believe is a good life
and to not be blindsided by it in life by coming to terms with it in a healthy
way.

------
Udo
_> “You all did everything you could, didn’t you?” he asked hopefully._

This may have been misunderstood by the author. The patient's loved one may
have asked that question in a more general context, to achieve some form of
closure. And the answer to this, truthfully, would have been that, yes, they
did everything they could - especially in the early stages of the disease when
there was still hope of minimizing the damage and/or alleviate suffering.

I understand the young doctor's judgement that the patient's loved one was
partially to blame for the needless extension of the patient's suffering. It's
a hard call to make, and people don't want to be the one who let a loved
person go. They're afraid that they'll always be asking themselves the
question whether they should really have given up on that person. That's why
it's better to have the patient set the policy while they're still able to
make that decision, precisely to not put relatives into that position.

------
musicale
Whenever I read something like this, I am reminded of several friends of mine
who are physicians, and how a couple of them seemed to undergo personality
changes during or after med school and residency.

After residency, they seemed to have lost an important part of their humanity
- namely compassion and a desire to help people. It was replaced an air of
superiority and contempt for others, tinged with cynicism and a joyless
gallows humor.

I'm not sure how common this is, or how my other physician friends managed to
avoid it, but it was a disturbing and obvious change that bothers me to this
day.

(Though now I think about it one thing some of them had in common was wisely
quitting general surgery residencies because of the massive and unprofessional
mistreatment of residents as well as rampant sexism.)

------
jacobn
“Being Mortal” by Atul Gawande goes in-depth on this broad topic, highly
recommended.

------
masto
I'm sure when you're in the medical field for a while, it's impossible not to
think of people as meat, but it is frustrating to be judged for making
difference choices.

My mother, over the past few years, has been going through the consequences of
being a lifelong smoker. She has had cancer, aneurysms, a heart attack, and
multiple breathing crises resulting in trips to the emergency room and weeks
in the hospital. She has survived all of this, despite the doctors'
predictions and in some cases best efforts to facilitate those predictions.
They see an elderly woman with multiple terminal illnesses in pain, so they
give her morphine, it depresses her breathing and causes hallucinations, and
she looks and acts the picture of someone who's not going to make it to next
week. That happened a year ago and my sister figured out that she was being
overmedicated, and a short time after stopping the end-of-life treatment, she
was able to go back home. Eventually she got enrolled in Hospice, which at
first meant access to some equipment and a bit of "help", but before long they
brought the morphine into the house to deal with some back pain, the amount
escalated, and she ended up back in the hospital where she stopped eating, got
an untreatable bowel obstruction, and rapidly lost a ton of weight. She wasn't
actively being treated for anything, and all of our interactions with the
doctors and hospice people were about ensuring there would be no life-saving
interventions, so we questioned the point of being in the hospital. Once
again, off the morphine she came back to life and went home. She didn't want
to die. We have had years of decent quality time together that would not have
happened if we hadn't taken an active role in preventing her from being
prematurely shoved down the "old person dying" chute.

I am a huge fan of modern medical science. It saved my mother's life and the
lives of many people I know. At the same time, people are human and do human
things. Not everyone values the same things. My sister and I found it very
upsetting to be constantly judged for wanting to do anything other than
medicate my Mom to death, and as it my be obvious from my tone, I'm holding a
grudge. I feel compassion for the author of this article for the trauma they
had and have to experience, but I do not respect them for it is obvious they
don't respect the family with the judgmental and holier-than-thou attitude.

~~~
Guereric
I agree that frank discussions between the healthcare team and patient/family
would be ideal. Suppositions that the team knows best, intimidation from lack
of knowledge, and unrealistic expectations can lead to unhappy outcomes for
both parties. I'm sorry that your mom didn't receive the care that you and
your sister felt she deserved. Messages like this will help others.

------
gscott
My father in law has sarcoidosis like in this article, twice they were sure he
was going to die and called in a Priest each time. He is still alive now
decades later.

------
Invictus0
I wish the author would have done more to explain the medical terms.
Presumably, the audience is not people who know what sarcoidosis is.

~~~
GavinMcG
Just the opposite. Doximity is a network for medical professionals; if you
Google it they expliticly advertise "no patients, just clinicians".

------
sgjohnson
If I ever end up bedridden with no hope for a viable recovery, please just
pull the plug or shoot me in the head.

Thanks in advance.

------
rf_atom
This article, and most comments here, seem to be of the opinion that most
doctors, friends, and family members don't present "accepting death" as a
valid option, but my experience has been the opposite.

5 years ago, my mom was given a cancer diagnosis, and a life expectancy of 6
months. And from that day forward, there was no shortage of people lined up to
tell us "there's no shame in giving up", "you don't have to fight", "die with
your dignity", and "don't prolong the invevitable".

What was far more rare were the people that reminded us that anything was
possible. Other survivors who had also been given months to live with an
untreatable cancer, only to "still be ticking" decades later, with an active
life. People that offered hope in traditional chemotherapy, clinical trials,
alternative approaches like special diets and exercise.

None of these people said to fight at all costs -- to live a hellish and
painful life. Instead, they offered the alternative -- that despite what the
doctors were saying, the doctors didn't know how long or how well anybody
would live any better than we did. They didn't tell us to ignore the doctors'
prognosis, only to be open to the possibility that the prognosis would be
wildly wrong, even if the diagnosis was right.

These people were the minority, but I'm so thankful we had their input.

My mom lived, without cancer growth, for over 4 years, when she was told not
to expect 6 months. And while we had plenty of rough days, we had so many
amazing days as well. While I can't speak for my mom, I'm as certain as I can
be that she wouldn't have traded those days for anything.

This wasn't for lack of concern that she was fighting just for me. I would ask
her at times whether she was just doing this for me. I'd tell her that, though
it would be hard, if she decided she was done, I would support her. Her reply
-- that she was grateful for the life she was still living, and didn't want
that to change.

And yet still, for 4 years, I had to constantly deal with nurses she would
meet, at work (as a hair stylist), online, etc. who would talk to her.
Inevitably the conversation would turn toward her cancer diagnosis, and when
my mom would tell the nurse or health care worker the type and stage of cancer
she had, immediately the happy conversation would turn grim.

Sometimes, the nurse would say "I'm sorry" to my mom, as though (in my mom's
own words) my mom had already died.

Others would come right out and say "you know that most people don't even live
6 months with that", as though somehow my mom would have made it through
regular doctors appointments and treatments without a single person telling us
what the prognosis was. Then came the dreaded "no shame in dying" part.

In every case, I'd find my mom depressed, defeated, and heart broken. It
wasn't that she was hearing information she hadn't heard before, but rather,
she was being reminded by people that presented themselves as smarter and
better than us, that the prognosis was bad, that we should just accept it, and
in some cases give us the impression that it was wrong to even want to fight
it, as though every day that we already had together beyond that 6 month mark
wasn't even deserved.

I would have to remind my mom that, at 1 year, 2 years, 3 years on, she had
already proven the prognosis wrong. And again I would ask, with guilt that I
was the only reason she held on, whether she was done fighting, and made sure
she knew I would support her either way.

I don't relay this to try to give false hope, or encourage people to live
horrible lives when they're ready to move on. I say this because I truly
believe my mom would not have been happy with her life, however long, had we
just accepted it from day one, and done nothing to fight it.

I say this, mostly, because the people telling us to give up or even just
reminding us of how this was supposed to end, no matter how well intentioned,
had NO idea the damage they did to my mom's spirit or quality of life, even as
she was seeing amazing results that were not supposed to happen.

And also, the people who helped us fight, I credit to giving us the time we
had, and the quality of life she had. Time that I am so grateful for.

If I have one take away to give, it's this -- if you meet someone who's dying,
no matter what you believe, the best thing you can do is offer simple
encouragement. Tell them, simply, "fight if you want to fight, and amazing
things might happen. Don't be ashamed or pressured against accepting it when
you feel like it's time. But YOU decide that, and NOT your friends, family,
doctors or nurses".

------
davidgl
This is very well written - [https://www.saturdayeveningpost.com/2013/03/how-
doctors-die/](https://www.saturdayeveningpost.com/2013/03/how-doctors-die/)

------
Havoc
Reminds me of the slow code article a while back

------
louwrentius
Quality above quantity.

------
warbaker
We didn't do everything we could, but this goes beyond palliative care.

We underinvested in research. We aren't as far along as we could be, and we're
moving slower than we can.

We, the voting public, are responsible for this tragedy. The US allocated just
2% of its budget to scientific research, and we elected officials who want to
push it lower still.

There shouldn't have been a tradeoff between quantity and quality of life. The
real tradeoff was made years earlier, between research and slightly more
material comfort. We chose material comfort, and she paid the price for it.

------
diminoten
I want to go out as a result of a series of violent mistakes trying to save my
life. Why would anyone want anything else? Peaceful death is basically
suicide.

Why do doctors continually perpetuate this notion that slipping softly into
death (palliative care, hospice) is preferable to continually trying to avoid
it by way of riskier and riskier attempts at treating the root cause?

At the very least, we could be honest about it and say what the real reason
is: we don't have the resources to try everything for everyone, and
normalizing a set of not-quite-everything standards is the best way to keep
the average level of care up for everyone.

~~~
DesiLurker
though I agree with you mostly I feel you are ignoring a couple of things

1) Pain, often pain management becomes a much bigger issue than going all out
fighting vehemently to prolong your life by a few more days/weeks/months. Its
hard to understand what chronic pain does to you and your mind unless you or a
close loved one goes through it. Often pain management also aligns with
'slipping gently into the night'.

2) Incentives, hospitals are in the business of making money and they's gladly
run marginally useful tests and medicines until they max out whatever coffers
they can. as I see its not long before the ethical/common sense minded
providers get overpowered by the money making machine and give in. as it is
perhaps you are not aware there was a study that concluded most (IIRC 75%) of
a persons healthcare expenses happen in last 18months of their lifes. just ask
yourselves this, would you rather give your inheritance to your kids &
grandkids or some hospital trying to maximize profits by promising you random
treatment that increases you life by a few months? ultimately this should be
your decision to make but there should be strong protections around the
options providers can present to you.

edit:formatting

~~~
jrnichols
Adding a study to back up yours. "Spending on Medicare beneficiaries in their
last year of life accounts for about 25% of total Medicare spending on
beneficiaries age 65 or older."

[https://www.kff.org/medicare/issue-brief/medicare-
spending-a...](https://www.kff.org/medicare/issue-brief/medicare-spending-at-
the-end-of-life/)

