

What Broke My Father's Heart (2010) - kumarski
http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?partner=rss&emc=rss&pagewanted=all&_r=1&

======
Udo
When my mother died last year, it was after six months of pure torture. She
had always been healthy before, then she developed sudden pain which quickly
led to the diagnosis of end-stage cancer. Though my mother had previously been
opposed to advanced medical treatment (she would probably still be alive and
well now if she had gone to regular checkups), she agreed to chemo and
radiation therapy. During the next months, her body gradually but radically
declined. Before severe morphine psychosis set in, she re-iterated her
instructions that no life-extending measures were to be taken. Her plan was to
die at home, surrounded by her things, and the people who loved her, if
possible in her green garden.

I quit everything to care for her during those last months. Our routine was to
have short hospital stints to apply quick fixes for whatever was wrong, and
then be sent back home where a nurse and I were taking care of her. One day
she could not move anymore at all, and by sheer coincidence she was lucid at
the time despite her heavy morphine dosage. We decided to arrange for another
diagnostic stint at the hospital. There, she deteriorated very quickly, within
hours. Sadly, she was completely delusional on that last evening so we could
not say good bye to her. I had not even managed to get her some basic things
like her digital picture frame or her favorite stuffed animal, because we had
all thought she would be able to go home again. She was not. During that night
she slipped into a deep coma, which was quite a merciful coincidence all
things considered.

Because she had made sure that she wouldn't receive any life extending
treatment, the hospital staff interpreted this to mean that no treatment at
all would be given. I was at her bedside when she almost suffocated on her own
vomit. If I hadn't been there to turn her around and make sure the fluid was
drained as best as I could without any equipment or other assistance, she
would have died quite horribly right there under the eyes of nurses and
doctors. Next the day, her swallowing reflex had seized to function. It was
very painful to watch, yet staff did nothing to drain the fluid despite my
repeated pleas to ease her suffering. Finally, she died (relatively
peacefully) that evening.

I can't help but feel after this, and despite having completed medical school
and despite having some experience with terminal illness, that everybody
failed in this. My mother should not have agreed to this huge amount of
palliative care that put her through hell, for longer than was necessary and
forced her to cope with the horrible staff at our local palliative center. I
shouldn't have agreed to and then arranged for that last hospital visit. The
hospital staff should not have denied her basic comforts and care on the
grounds of a DNR. The entire thing was a huge screw-up.

Somewhere between trying everything we can and knowing when to let go, between
planning and sudden decision-making, between being professional and being
compassionate, there is a balance that we have not found yet.

~~~
gehar
I'm sorry for your loss.

Medical technology is not yet at a state (and probably never will be) where we
have foresight and skill to balance pain relief and life protection in the
face of all the ways a body can succumb. Every choice is a gamble. There is
still much to improve.

At the end of life, a body is wastage, and gives no one pleasure or comfort.
Don't let that overshadow everything before.

May the memory of your mother's many years be a blessing for always, as your
love for her comforted her for as long as she was conscious.

~~~
Udo
Thanks, I appreciate the sentiment.

However, as someone with medical training, this experience prompted me to
introspect more than anything I ever saw before. This is not just about my own
private failures in the face of disaster, it has also re-kindled my conviction
that a lot of things are deeply wrong with medicine as it is practiced today.
Many of these things are fixable in the short term, but won't be because of
clinical culture. What's worse, many other things are only fixable long-term
if we as a civilization can manage commit to a certain kind of research even
if it's not justifiable by (short term) profits. I've become very pessimistic
about this.

------
digitalengineer
_Do you think your (grand)father/mother is in pain?_ This is what some
experienced nurses ask you in Holland when you're sitting by your loved ones
on their deathbead. If you say "yes, I do", they will increase the morphine.
They might ask again later. (Only when it's obvious they are dying and are
already in coma).

~~~
LekkoscPiwa
According to some papers branch of medicine dealing with pain-killers is on a
much lower level in the Netherlands than in the US. The reason is pretty
obvious. Who will pay for pain-killers in socialized medicine when you can ask
if they are in pain, if they want to die, and here we go! The state just saved
thousands!

~~~
gehar
You could make the same non-sensical argument against insurance companies in
the US, or a symmetrical argument about providers torturing patients to run up
the bills for more procedures.

Or you could stop trolling.

~~~
LekkoscPiwa
Not trolling. Just tired of people believing in socialized medicine. Ask
Canadians waiting months or even years for live saving surgeries. Lech Walesa
had a heart surgery done recently. In the USA. He brags all life how good
socialized medicine is, but when it is him, he doesn't do it in Poland. Not in
UE countries like France or Germany. Not in Switzerland. He goes all the way
to the US. Socialized medicine doesn't work in contrary to the propaganda in
the USA. Death panels are daily thing in places like Polish hospitals where my
mother in law worked. There is just this much money from the state - for a
single one heart surgery every 3 months. And when you have on average five
patients - who will get it done becomes function of a bribe. Ever heard of a
government department with sufficient funding for their operations? And
instead of calling me a troll please google the issue. See how many cancer
patients in Canada don't get timely treatment because of the cost. Where -
mind you - time is the single most important factor when fighting cancer.

------
tokenadult
Previous Hacker News submission with lots of discussion:

<https://news.ycombinator.com/item?id=1448364>

The article "How Doctors Die" from a different publication has also prompted a
lot of discussion about related issues in previous submissions to HN:

<https://news.ycombinator.com/item?id=3313570>

<https://news.ycombinator.com/item?id=5104430>

AFTER EDIT: I see a lot of other HN participants here are sharing personal
stories of caring for dying parents, so I will briefly mention mine. Just more
than eleven years ago, an April with a late arrival of spring like this year
meant that we had a winter storm in early April. My dad was out on a shopping
errand in the morning, and slipped and fell on an icy store parking lot while
walking back to his car. He was just days before his seventy-second birthday
then, and the slip and fall left him paralyzed from the neck down, as he
injured a cervical vertebra in the fall.

He originally thought he would fully recover from that injury. He had fully
recovered from a similar injury (from a car crash while his mother was driving
him to college) when he was still a teenager, back well before I was born. He
had surgery after his later injury, but the surgery only made his condition
worse--not only could he not move any of his limbs, but he also couldn't clear
his throat or swallow, and he could speak only with difficulty. He spent the
last six years of his life that disabled, sometimes making a bit of progress
in recovering motion through physical therapy, but never making enough
progress to regain the ability to walk or to eat without a gastric tube.

So, yeah, end of life care issues are tough. My dad thought beforehand that he
had written down careful instructions in a personal care directive prepared
years before his injury. But even though that document listed many different
possible conditions, with directives for his care in each case, what actually
happened to him was an edge case compared to everything on the list. It
absorbed a lot of my time and attention while my children were young and I had
just moved back to the United States from overseas to check how my dad was
doing and keep him company when his other family caregivers were exhausted.
For six years, our weekends were visits to grandpa--never much of anything
else.

In the end, his transition from eventual intensive care as health issues piled
up from his long-term immobility turned into a very brief stay in hospice
before my dad died. (My dad died at a considerably younger age than his father
before him.) I'm sure he didn't want to die that way. He wanted to walk again
before he died, but that was never possible. Slow decline in health is hard to
face and hard to make satisfying decisions about.

~~~
digitalengineer
Thank you for sharing. Someone I know has the same condition (hit by a car,
parallelized from the neck down, not able to breath on his own). I just
realized I haven't seen him is quite some time as I'm always busy in my own
way. I'll correct that tonight.

------
unreal37
A reminder that, although medical advances can extend life and some are
predicting that the average lifespan will soon be into the 100's, it's fair to
ask "why?" If we are in a vegetative state, have dementia, Alzheimer's, and
other diseases of old age... it might be better off to let someone peacefully
die.

~~~
rwallace
At the moment, a large and increasing percentage of total medical expenditure
goes on prolonging the time over which people are tortured to death. We need
to switch resources away from such negative value expenditure towards research
programs like SENS that are aimed at slowing or partly reversing the effects
of aging, which would prolong healthspan, not just nominal lifespan.

Or put another way, we need to consider the classic story about the man who
wished for eternal life but should also have remembered to wish for eternal
youth.

~~~
unreal37
Its a tough moral problem.

Does the government and private insurance stop paying for heart transplants
and life-prolonging procedures after the age of 75?

I wonder what percentage of medicare/insurance payments goes towards
prolonging life into the 80s and 90s?

I can't imagine being a doctor and having to make that decision, or break the
news to a family that they're not allowed to save a life due to old age of the
patient...

~~~
gehar
Age cutoffs were not mentioned in parent post.

It doesn't matter who pays, the question still exists. Where to spend finite
resources?

------
redact207
It always angers me that government and committees claim the final say to my
own life. I only hope that when I do get to such an age, I have the clarity of
mind to still be able to poison myself if it's a choice between a quick death
or putting my family through a slow decomposition.

~~~
wjnc
That's not how I read the article. I read the article as stating that, even
though you have final control, there are so many players and agenda's and
sudden decisive moments, that you still only have a weak grasp on events.

In my opinion, awareness is key. Talk to your spouse and/or parents, primary
physician and write stuff down. Make sure (like the mother in the story) that
you Know you have a choice and that you and your supporters are able to voice
that choice.

~~~
jtheory
This was my take, too -- there are lots of players, many of them have strong
incentives that are misaligned with many patients' priorities, and for a
patient and their caregivers to even _understand_ what decisions will help
them have the end-of-life care they want is quite difficult.

Even when the patient has really good advocates who have the expertise
required (like their primary care physician in the article), the system is so
fragmented that very few of the professionals involved in these decisions talk
with each other... so the advocate may not be able to help at all at the
critical moment.

These are hard problems to solve; I'm proud to be working on part of the
solution (the fragmented patient record and broken communication), but there's
a lot more needed before this kind of experience will be a thing of the past.

------
yason
It is perfectly within the fundamental rights of an individual to not want to
be cured (or "cured"). I think doctors do recognize it, they are human
individuals themselves, but because of the status quo of death being sort of a
tabu they just _can't_ officially suggest that when it's the time to go it
might be the time to go.

~~~
masklinn
> I think doctors do recognize it

Doctors recognize it so much they're at the forefront of avoiding this kind of
behaviors and futile refusal to just die:
[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)

~~~
yason
It's also a known and studied fact that doctors "prescribe" a whole lot
different medication (such as natural products known for suitable vitamins,
acids, and other substances) to themselves than to their clients (commercial
drugs).

------
ams6110
The story mentions cognitive decline after major surgery, which is definitely
a concern and not sure how much it's really discussed. My mother had a
noticeable change in "brightness" after a knee replacement, and within 18
months was diagnosed with ALS. I'm not sure we can blame the surgery but I
think the neurological side-effects of deep anesthesia particularly in older
patients is something that requires a serious weight of risks/benefits. This
was not something that was discussed by any of her doctors, at the time.

~~~
meric
I think that's why doctors recommended my grand mother to only have a knee
replacement with local anaesthetic. It was interesting hearing her talk about
her experience of the operation...

~~~
bsg75
It would be useful to hear about her experiences, especially regarding the
"drawbacks". The side effects of general anesthetic in the elderly seem to be
troublesome.

~~~
meric
I remember she said she was able to feel the doctors chopping up her knee but
she felt no pain. Also there was a curtain so she didn't have line of sight to
the operation.

------
rayj
Alzheimer’s will be made treatable, provided there is sufficient money to be
made. The oldest baby boomers are now 67 which is old enough for dementia to
be a real issue. I predict that legislation similar to Nixon's war on cancer
will be on the table within 5 to 10 years.

------
kiba
This article was published in 2010.

~~~
BaconJuice
Why does it matter? That was a very interesting read. Did you read it?

