How Doctors Die

In most cases, EMS in the field is operating under a fairly tightly defined set of protocols. Those protocols define what is or isn't a valid "Advanced Directive"

cturner4• 15 years ago

I spent a lot of time hanging around nursing homes when I was growing up, and decided a long time ago that I'd like to do fast and well before I get to that stage. The NO CODE tatoo is a great idea.

dcurtis• 15 years ago

I was in Best Buy earlier today and the sales guy who was trying to sell me a TV reminded me a lot of the doctors/residents I was dealing with during a few weeks I spent caring for a family member at Mass General Hospital a couple years ago. I don't think they do it consciously, but doctors try to sell you on their philosophies for healthcare.

But it doesn't matter. You're sitting in a small room with dim lights and someone tells you that you have two choices:

1. You can die a certain death, within months, with very little pain, or

2. You can try some heroic measure like chemotherapy for a minuscule chance of a multi-year moderately happy, but extremely painful survival.

Humans are programmed to have hope, and, regardless of any logic, the vast majority will choose option 2. It's just like playing the lottery. Even now, as I think about those two options in good health, I am compelled by my nature to choose option 2.

rdl• 15 years ago

I can't imagine not doing #2 unless I'd also be non-functional during the extended life period. If I could read, use the Internet, write, talk to people, etc., it seems like it would be worth pain (which will end when you die, no matter what).

The only case where I could see #1 being a reasonable choice is if #2 puts such hardship on those around you that their lives become much worse.

bad_user• 15 years ago

In case of chronic diseases like cancer, #2 does put hardship on those around you and their lives will become much worse.

ams6110• 15 years ago

Nobody gets out alive, so for me it's definitely a question of quality not quantity. It's all very case-by-case however; for example my dad had major surgery to remove most of one of his lungs (cancer) and recovered and had another pretty normal decade of life before the cancer returned, at which point in consultation with his doctors he decided he wanted nothing more done. He could have had more surgery, chemo, radiation, but was clearly in the zone of diminishing returns (enduring a lot of unpleasantness for maybe a bit longer life of uncertain quality).

bh422223• 15 years ago

For me #1 is easy. Screw writing and reading, instead travel around the word, jump from planes, swim with sharks and die in months. 100% better then daily visits to a hospital for a handful of years.

What I, and a lot of people like me, are doing now by not doing #1 is gambling we'll get to do it in the future. This is an easily lost gamble, but oh well.

WettowelReactor2• 15 years ago

It is easy to say that pain would be worth dealing with but in reality the majority of the healthy public has no understanding of what true chronic pain entails. Ask anyone who has worked in long term or hospice care this question and you will likely find an overwhelming majority choosing option 1. The reality is that in the US death and dying are still anathema.

danssig• 15 years ago

Well, when winning the lottery means living and losing equals the same thing as not playing; I'm going to play every single time.

willyt• 15 years ago

Only equivalent if where you buy lottery tickets they jump over the counter and beat the crap out of you every time you buy a ticket.

silversmith• 15 years ago

But it does not equal the same as not playing. The end result is the same - death. Heck, the result of all three possibilities is the same. But the difference is in the length and quality of life leading up to it.

Given the choice between now and couple years of pain later, I currently see myself choosing the former. I don't want to go through the process of becoming a disease-worn shadow of myself, and neither do I want to be remembered as one. Maybe that will change with age.

AJ007• 15 years ago

Especially when someone else is paying for all of those lottery tickets.

sireat• 15 years ago

Probably most of us belong into "Dum spiro, spero" category, but I have known some non-doctors who have taken option no.1 (painless death) and even accelerated it.

josscrowcroft• 15 years ago

"Dum spiro spero" => "While I breathe, I hope" - for those of us who don't remember their Latin training, myself included.

antoinehersen2• 15 years ago

It is obviously a personal choice but situation #2 may be worse than you imagine.

You can write, read, and interact but only for a few hours each day. Pain and fatigue take over the rest of the time. There is also so many little things you take for granted you will not be able to do anymore, or will require assistance to perform. Eating can become a chore, you may have to be regularly plug to some gruesome apparatus, also loss of mobility. Think about the last time you were sick, or injured, think of the worse moment being your new normal. I personally can`t imagine being happy in those circumstances. I choose #1.

Each person choices should be respected, and people should be better informed on the tradeoff of each choices, which I feel is not the case in our health care system.

kalid3• 15 years ago

Humans are notoriously bad at predicting what will make them happy.

spodek3• 15 years ago

Humans who haven't thought about it aren't, but when you've thought about it you can predict very well.

euroclydon• 15 years ago

People frequently choose #1 half way through #2.

anigbrowl4• 15 years ago

I don't think they do it consciously, but doctors try to sell you on their philosophies for healthcare.

No, doctors try to make you as fully aware as possible of the options available to you, so that you or your heirs don't turn around and sue them later for 'withholding information that could have saved your life' or something along those lines. Arguably, these suits are motivated in part by the need to defray the extremely high costs of care and pushing back at the physician or caregiver about the quality of clinical care is a powerful negotiating strategy because it plays well to a jury.

nroach• 15 years ago

"Lawsuits" are an easy scapegoat, but it's probably not a significant driving factor. For example, Texas has very strict tort reform laws which basically make it impossible to sue a doctor for malpractice. But defensive medicine hasn't faded at all in the four years since those laws took effect.

Structurally, our system is designed to over-treat. With co-pays, insurance, subsidized care, and contractual discounts, patients seldom are aware of the exact cost of treatment. How often do Doctors explain to patients up front both the tests to be performed and the line-item cost (both to you and to the payor) of each?

Most doctors don't, and realistically can't, know the cost for each patient under each plan. Usually, it's a binary decision for the doctor (covered or not covered).

Try it sometime. When your physician suggests a procedure, ask what the real cost is, and whether he/she thinks that the value of the results will be worth the expenditure compared to alternatives. It's simply not something that's "baked in" to the thought process of the medical profession either in medical school, residency, or thereafter.

harichinnan• 15 years ago

The choices are very binary. A right choice would be option 2 with right to die if things don't turn out as planned.

buyx2• 15 years ago

Just this weekend I met a relative on the street (mid fifties), doing some shopping. A few months ago, he had some chest pain, his wife thought it was a heart attack and drove him to the ER. As he was being admitted, he went into cardiac arrest, he was resuscitated, and now his four teenagers have their father back, for a few more years at least (he is back at work, and seems to be living a full and healthy life). What's interesting about this, in relation to the OP, is that his wife is a doctor, and she was the one who resuscitated him.

Yes, it's just an anecdote, but a useful one to balance against those in the OP. Obviously the situation differs if you have a terminal illness, or other serious health issues, but I think a blanket NO CODE rule is a little extreme.

rrrazdan• 15 years ago

The situation you are talking about is very very different from what the OP is talking about. But yes I agree, a blanket NO CODE rule is extreme.

Luc• 15 years ago

> I think a blanket NO CODE rule is a little extreme.

That's because it's something of your own invention. No one is advocating this, especially not the health professionals involved.

buyx2• 15 years ago

No one is advocating this, especially not the health professionals involved.

...except when they wear bracelets and tatoos stating "NO CODE".

sovande• 15 years ago

"terminal illness" is the keyword here and what "no code" is associated with in medical terms. A heart attack, a stroke and similar acute traumas should definitely be treated. These patients may live a close to a 100% life afterwards.

fingerprinter• 15 years ago

So, couple of things. Just had my wife read this (she is a doc) and we chatted about this.

We are in our mid-30s and several years ago she was admitted to the ER and then ICU for 7 days for an obviously life threatening situation. (She has a near blanket NO CODE, FYI). She recovered, but there was at least 48 hours where her odds were "much worse than a coin flip" as on of her colleagues told me.

So people distinguish the different situations, in that situation she and her colleagues (she was treated at her own hospital...given that it was the best hosp in the country) knew about her NO CODE and still treated her. The reason being that medical intervention was near 100% likely to produce a positive outcome and bring her back to a normal quality of life.

However, if given a terminal diagnosis such as in the story, my wife, without hesitation, said she would choose to go without treatment. She went further and wished that this type of article could make its way to the NYT or some other outlet to get normal folks to think about. She, like most doctors, has seen way too many people "try to live" only to saddle their family with huge expenses, not dramatically effect their prognosis and basically make the rest of their lives as painful as possible.

Obviously not a fun conversation to have with your SO, but I for sure know exactly what she wants and how to ask the right questions at the hospital just in case. She also knows what I would want and how to make the right decisions.

celticninja• 15 years ago

Re:saddling their family with huge expenses, this is a fairly unique problem in 1st world healthcare situations, in that it mainly applies to people in the US. In most other developed nations healthcare and bankruptcy do not go hand in hand.

dmgottlieb2• 15 years ago

But the money is just as wasted no matter who pays it.

juanre• 15 years ago

My spouse is also a doctor, and she also went through a life threatening illness. For several days her odds were poor, but full recovery was one of the options. She pulled it through and was lucky. We have had this conversation as well, and her answer is unequivocal: do let me go.

z2amiller• 15 years ago

Is there a good way to phrase (i.e. "Doctor Speak") for something like "No Code unless a probably positive outcome with intervention"?

larrys2• 15 years ago

Agree. My wife is a MD also (internal medicine) and the only time I saw her cry was when she received a call in the middle of the night and found out that one of her patients that was dnr/dni (an elderly lady) had exactly that done to her. The staff at the hospital where she was off shift had overlooked the directive.

latch• 15 years ago

This is obviously a very personal topic, but I can't help but ask whether medecine benefits from people undergoing "futile care"? Are some diseases only treatable today because 20 years ago someone went through all the crap?

The whole thing reminds me of the average mid-90s movie Phenomenon. I could always understand Travolta's character's reasoning, but I still thought it was selfish.

Cass4• 15 years ago

Medical research benefits hugely from terminally ill patients who are willing to try anything for even two more months of painful life. There are a lot of of experimental, highly dangerous cancer treatments that could never be justified if not for the fact that even without them, the patient would have about two months to live.

That said, there will always be enough patients who want to fight for their life no matter the cost (see other comments on this page for evidence) that if you'd prefer to die in peace, you certainly shouldn't feel obliged to play the guinea pig for science.

DanBC2• 15 years ago

Science doesn't work like that.

To get meaningful results you need a large sample size, with a control group, with patients not knowing whether they're getting the new medicine or the old medicine[1] and with doctors not knowing either. Then you need to write that up and analyse it.

Many patients are happy to take part in such trials, but it's hard to get ethics panel approval.

[1] you tend to test against current best treatment, not placebo, because almost anything works better than nothing and by the time you test the treatment in humans you need to know if this is better than what you're already doing.

Ethics panels have some weird effects -

(http://www.badscience.net/2011/03/when-ethics-committees-kil...)

Cass4• 15 years ago

That's how it works in the best case. Unfortunately, medical research is not a perfect science. Realistically, with many medical treatments, you can't have a double-blinded study. With chemotherapy, the side effects will often quickly tell you what treatment you're receiving, and a treatment like for example extracorporeal photopheresis can't ethically be placebo-controlled or double-blinded at all. What are you going to do, hook half your patients up to a machine that will do nothing but run their blood around a bunch of tubes for hours for no reason?

And you can't get a "large sample size" of patients with rare cancers or diseases by definition. Sometimes, the best you can do is a case study of ten patients who agreed to try your treatment because the other option was death. Quite a few medical advances have been made that way, actually.

vacri9• 15 years ago

Science is rigorous, repeatable observation. Double-blind studies and null hypotheses are excellent ways to achieve this. But case studies and low n studies are also informative - and are science. That science can only be control groups and null hypotheses is a myth.

Try and tell the medical fraternity that case studies should be eliminated because they hold no meaningful result and you'll be laughed out of the room.

vesrin• 15 years ago

I think there are examples of what you're saying. I remember reading in "The Emperor Of All Maladies", by Siddharta Mukherjee, about experimental chemotherapy treatments that initially only extended the patient's life by 6-12 months. Later, as science advanced, combining these with new therapies greatly increased the survival rate.

But in the end, it is an individual choice. There will always be some who choose to fight no matter what (and they should be aware of their chances) and there will be others who prefer to let go.

jonah• 15 years ago

Both of my grandfathers died in the past five months.

The one who lives halfway across the country was 97. He woke up at his lake cabin the morning before he died complaining of chest pain and shrugged it off but was soon being transported unconscious to the hospital accompanied by his paramedic neighbor. He slipped into a coma and the next day with several of his children at his side, was removed from the ventilator.

My other grandfather, who lives in the same town I do, was 93 and had struggled for the past several years with a progressively debilitating illness which increasingly kept him from being able to do the things he wanted to do. A couple weeks before his death his health took a turn for the worse and he quickly began losing connection with the world. He did go to the hospital and tests were done and drugs given, but we soon understood that he wouldn't recover and we brought him home. The hospice nurses and caregivers were wonderful. All his children came as did many old friends. He died in his sleep in his bedroom with his wife and children there.

Both had advanced directives requesting minimal effort to prolong their lives. My grandfather here wanted no heroic efforts and "no machines". Even so, a lot of intense discussion among his children was involved in coming to peace and/or acceptance of what exactly that meant, what the moral and ethical implications of different interpretations were, and how best to carry out his wishes.

This is what I'm now doing and what I strongly encourage you to do now:

* Create an advanced health care directive for yourself. You can get forms and examples online.

* Consider the various situations one might end up in and lay out as explicitly as you can what you'd like to be done or not done to you. The more specific you are, the more likely your intentions will be followed and the less your family/loved ones may have to struggle with the interpretation.

* Talk to your your family and loved ones about your desires. It's a hard and awkward discussion to have but do it. Be clear and frank.

Takeaway: Have an advanced directive. Be as clear, specific, and explicit as you can about your desires. Share your desires with your family, loved ones, and care providers. It is helpful not only you but form them as well.

Cass4• 15 years ago

To everyone considering a "NO CODE" tattoo after reading this story: Don't. If you're really that serious about not wanting to be resuscitated under any circumstances, wear some kind of bracelet or necklace with those words on it, and, just as importantly, a recent date, and contact info for a person who knows your exact wishes. Make sure to update the date regularly.

Medicine changes, and so do your life circumstances. If you're presenting an EMT with a ten-year-old, faded tattoo, you're placing them in an awkward position due to the lack of context. Is this a decision you made ten years ago and got stuck with, or are these your current wishes? They might end up disregarding your wishes just to be safe. A bracelet with a recent date will be much less ambiguous.

And remember, with all medical decisions, you want the ability to change your mind when medical advances are made or your circumstances change. Tattoo removal sucks.

janzer• 15 years ago

Not to mention that at least where I'm from a tattoo will not and cannot be accepted by EMS personnel as a valid order. Here is the relevant part from our Medical Control treatment protocols on what can be accepted as a valid do not resuscitate order:

"Patient is wearing a do-not-resuscitate identification bracelet which is clearly imprinted wit the words “Do-Not-Resuscitate Order”, name and address of declarant, and the name and telephone number of declarant’s attending physician, if any OR

The EMS provider is provided with a do-not-resuscitate order from the patient. Such an order form shall be in substantially the form outlined in Annex 1 or 2 and shall be dated and signed by all parties."

Anything else and we are required to follow all the regular resuscitation efforts.

vacri9• 15 years ago

How bizarre that they'll accept 'do not resuscitate' on jewellry, but not tattooed across the chest.

"Do we think he really meant it? Nah, he just got the tattoo - if he really meant it, he'd be wearing one of those constantly annoying bracelets"

hncommenter13• 15 years ago

This was drilled into our heads in EMT school--without a valid DNR per protocols, we continue CPR. The exact rules vary from county to county and from state to state, but the point is to ensure that the DNR is well and truly valid before denying potentially lifesaving care to a patient (and to legally protect the first responders, who can lose their license/possibly go to jail for recklessly failing to provide appropriate care).

You can read San Francisco's EMS protocol for DNRs--it's more complicated than just saying (or wearing) "NO CODE."

http://www.sfdem.org/Modules/ShowDocument.aspx?documentid=76... (warning: pdf)

Note that the bracelet/necklace frequently has a phone # that the first responders can call to verify the DNR.

VMG5• 15 years ago

One alternative that hasn't been mentioned here is cryopreservation. Once I have the resources and the technology has progressed, I'd certainly choose that option above being treated and "NO CODE".

Jach3• 15 years ago

Totally on board with cryonics, it's really depressing that it gets swept under the rug considering it probably has at least 5% chance of working for a patient suspended today. Though your excuses for presently avoiding it seem pretty flimsy unless you're really dirt poor (I'd wager unlikely), especially when life insurance payable to the cryonics company is cheap (you only need $28-$35k for CI) and so are membership fees ($120/yr or $1,250 once for CI; I spend more than $120/yr on fast food). But don't get upset, my excuses for not being signed up yet are pretty flimsy too.

VMG5• 15 years ago

It's not exactly about the money - I'm in Europe and the only providers I know of are situated in the US. The last time I looked into it they needed a DNA sample from me in person, so at least I'd have to book a trip to go there.

But from a cost-benefit perspective, it still is pretty flimsy. Definitively one of my worst cases of akrasia.

dennisgorelik4• 15 years ago

Where did you get this "at least 5% chance of working" number for cryonics?

It's at least 3 orders of magnitude lower than that: no one was recovered from that frozen state alive so far.

philwelch7• 15 years ago

Setting aside how completely fictitious that 5% is, here are my problems:

1. Cryonics is the sci-fi version of Pascal's Wager. If cryonics is rational, than by the same reasoning so is Christianity.

2. Cryonics doesn't guarantee quality of life. If the brain is poorly preserved, you might be woken up in the far future with profound and irreparable dementia. And I mean "irreparable" not in relation to the limitations of medical science at a given future date, but in a purely information-theoretic sense. There might not be enough information left in your flash-frozen brain.

3. Cultures don't evolve because people change their minds, they evolve because people die and become outnumbered. If there's one thing the future doesn't need, it's us. And likewise, I think we would be shocked by the future.

4. Even if cryonics is theoretically feasible, I would need pretty good assurance that the cryonics company weren't charlatans. The news so far on that front isn't promising.

defdac• 15 years ago

Tonight I will tell the mother of our child that if I reason in any way that resembles this article she should slap me in face and tell me to fight for my life. For my daughter and my own sake.

In Sweden medical care is free. I can fight as long as I want without them getting in trouble. I also suspect I should fight so hard as if the illnes is truly terminal I will end sooner in flames, not later.

I want all the tubing. I want the cracked ribs and surgeons transform me to a piece of blubber and then anlyze the hell out of it so anyone else don't have to go through the same thing.

Telling people to give up because of money or some sort of gentleness to yourself or your family is alien to me. Maybe it's our harsh climate uphere. Swedes seems very in tune with our suffering.

krig3• 15 years ago

Interesting. I found myself responding to the article in much the same way as you. Also Swedish. The question is: are we being rational or deluded?

I have friends who are medical professionals and I don't recognize them in this either: I highly doubt any of them have NO CODE tattoos or anything equivalent. I suspect society shouldering most of the cost might be a factor: with a privatized payment system, there are perhaps incentives to go too far that aren't there when there's no profit to be made? That's pure conjecture, though.

Cass4• 15 years ago

This is not a question of being "rational", and there's no right or wrong answer. People make trade-offs between quality and quantity of life every day. Do I want to quit smoking, drinking, drugs, and take up sports, etc for a chance at a longer, healthier life? Or do I grab all the fun I can, and if it costs me ten years, oh well? The right decision will look different for every person - and it's not black or white, but a continuum.

The choice of how much pain is worth it for how much of a chance at a longer life is going to look different depending on your religion, your responsibilities, your age, your experiences with pain, your family, your culture, etc. And yes, of course the cost of treatment will factor into that decision for both the doctors and the patient.

earl• 15 years ago

I'm an american and for me, it's not an issue of cost. The issue is how do you want to end your life on this earth. My father died of lymphoma when I was 17; he got it twice. The survivorship rates if the first set of treatments didn't work were not awesome. In his case, he died after multiple rounds of chemo and radiation and surgeries, incisions that didn't heal for multiple months, collapsed veins leading to a shunt installed in his chest, persistent nausea for half a year, so much pain that if properly medicated he was barely lucid, being forced into a wheelchair, having to wear a diaper, bleeding from his eyes and mucous membranes, etc.

Having seen his tour of the medical system, I desperately hope that if I were ever in that position, I'd have the strength to say no: treat the pain and I'll die in peace.

lisperforlife• 15 years ago

My mother succumbed to cancer over 10 years back. I was in my late teens and remember the treatment being way more painful than the cure. The medical care was so bad in india that once the nurse messed up the chemo shot and delivered it wrong. This resulted in oedema. Doctors could offer nothing more than an apology. I still find a lump in my throat when I recollect those days. However, in the end, my mother rejected treatment. She did however wish to live a long life. But she could not bear the treatment. Doctors gave her 2 months. But she lived on for 8 more months on painkillers to maintain as normal a life as possible. She managed to remain cheerful and positive before us kids. Living with someone you love knowing that they would die soon is really painful.

If I am terminally ill, I will probably reject treatment and choose to go peacefully.

vacri9• 15 years ago

Telling people to give up because of money or some sort of gentleness to yourself or your family is alien to me. Maybe it's our harsh climate uphere. Swedes seems very in tune with our suffering.

It's not about being tough and macho. A lingering decline can be psychologically painful for everyone involved. Pretty much everyone I know that has been involved in caring for someone who suffered a slow decline - particularly alzheimers - don't want to go through that themselves.

You say now that you may want all the tubing and to be bounced around from doctor to doctor (not all of whom know what they're doing, by the way), but it's a very different beast when you're actually experiencing it. Some folks just say 'do what you gotta do'. Others say 'I don't care what you think you'll find with yet another test, the endless battery of tests is worse than the disease'.

andrewmu• 15 years ago

A lingering death can sometimes be easier for those round about you, to some extent. They know what's happening, get a chance be resigned to the future, but still talk to you before the end. And if it's painful, they can feel relief that your suffering is over.

When you die quickly, you personally don't suffer, but those around you are stunned by the sudden, often unexpected loss and life. It seems cruel and arbitrary.

vaughan• 15 years ago

Here, here. I'm from Australia where medical care is also free. This idea of dying quickly as to not burden your family with medical expenses is ridiculous, given the success that single-payer health care has had in many countries all over the world.

I understand that some conditions cause insufferable pain with very slim chances of surviving, but there are many success stories from people who have battled through. Its often these same people who provide the courage to others to battle on and raise money to support the families of those who have had similar experiences. We shouldn't be thinking about optimising our lives for our own happiness, but for the generations yet to come.

I will always fight for my life to the bitter end. There is no way I would leave my children to come to grips with why their father gave up without a long, hard fight.

budley• 15 years ago

It's not free, public hospitals are overcrowded and full chemo etc costs a lot. Fight to your last breath if you want to but the point of this article is that doctors themselves think that on average you will be happier living your final days without extreme treatment. All the miracles you've heard of are effected by reporting bias.

ssharp• 15 years ago

"In Sweden medical care is free. I can fight as long as I want without them getting in trouble."

It's not free. It's free to you, but it is placing additional costs on the Swedish medical system, which somebody is ultimately paying for. You don't have to internalize the costs of your decision.

I'm not arguing whether or not you're a making a good or bad decision, or whether or not "free" medical care is a good thing. I'm just pointing out that providing such a system skews decision making.

jlangenauer• 15 years ago

As would a pay-for-treatment medical system, like in the United State, which simply skews decision-making in a different direction.

(Or, if your uninsured/indigent, reduces the choices you have available to make a decision between anyway)

tibbon• 15 years ago

Free or not, it seems to work pretty well for the citizens there. You don't have a sizable portion of the population filing bankruptcy over medical bills and they haven't gone bankrupt like Greece. Something Sweden is doing is right.

gnaffle• 15 years ago

Medical care is free, but it too has a limit. There is a finite amount of money available for treatment, and there is an almost infinite amount of new, unproven treatments that might just work.

Lots of people put themselves into debt trying alternative or experimental therapies, even in countries with universal healthcare. The sad truth is that whatever kills you will probably not be something that the doctors can learn much from. It will be some disease that is well known, with lots of data on survivability etc.

Symmetry2• 15 years ago

In Sweden medical care is free. I can fight as long as I want without them getting in trouble.

I thought Sweden had committees to decide on what standards of care would be provided or not, preventing you from making the mistakes discussed in the article?

EDIT: Also, remember that the US government spends more per capita paying for people's health care than Sweden, but manages to spend that huge amount of money on only poor and old people who don't have employer-provided health care.

philwelch7• 15 years ago

Have you ever been hospitalized? How old are you?

jasonwatkinspdx2• 15 years ago

"For my daughter and my own sake."

Your family is your business, but I have watched both friends and family die fighting hard in the ICU. It would not have been my choice to watch them, nor for them to go through that for the sake of myself.

Fighting for the sake of fighting alone has no value.

Watching a loved one suffer is agonizing.

LaGrange• 15 years ago

So, I'm living in a country that has public health care too, worse than Swedish, but oncology is pretty well funded.

I also have "fight for life at all cost" experience, though only with animals (I provided a kitty foster home, and through that assisted in a vet clinic somewhat). It's not like with humans, but enough.

I have also seen my grandfather's last days, so maybe that influences me somewhat.

If I ever get cancer, barring some incredibly lucky circumstances when it's completely resolvable, I will avoid treatment. The suffering is not worth it, and the pressure on the loved ones is not just financial.

ricardobeat2• 15 years ago

I don't think we've read the same article. It's not about money.

Gatsky• 15 years ago

What's the message here? That people shouldn't have chemotherapy? That we shouldn't do resuscitation? That all advanced cancers should just receive palliative care?

This seems to be a rant ie. the author has a strongly held notion that he has disguised as an argument devoid of any nuance. The support for his argument is that doctors secretly run a mile away from hospital whenever they get sick. This is not true and a gross generalisation.

Cause guess what, not everyone has a loving family or a house in the hills or a cousin with a big screen TV to go to when they are dying from a terminal illness. Some people want to try and fight their disease, and they are tenacious and brave and admirable and that's dignifying to them and to those that try and help them.

This article is an attempted justification from someone who has lost faith in what they do, nothing more.

antoinehersen2• 15 years ago

The message is that there is another choice.

I read it as giving people a different perspective on end of life care. The system is heavily biased toward all out medical care. This article show the other side, using as examples people who have a better understanding of the tradeoff.

This decision will always be a personal one, there is not right or wrong answer, just different possibilities.

OoTheNigerian• 15 years ago

People should differentiate between terminal illnesses and acute illnesses like heart attacks. For the later, I am sure the OP has no problems with treatment.

The leader of the breakaway Republic of Biafra died this week. He was less than a vegetable for 8months until his death. Here was a man who was larger than life reduced to helplessness. At the age of 78, I am wondering why he was tortured for these 8 months so he would be 'alive'.

I am certain if he had the choice, he would have preferred to go with dignity. Unfortunately, people never want to prepare for such things. When it happens, their end is determined by others.

My President Yaradua, also had the most undignified of ends possible. In theory Ariel Sharon is still alive. http://en.wikipedia.org/wiki/Ariel_Sharon

I want my end to be dignified. If God forbid, I have a terminal illness, it will not be a hard decision to make. Quality NOT Quantity.

rbanffy2• 15 years ago

I was married to a doctor for 10 years. Before that, I lived with my aunt, also a doctor.

The one thing that absolutely shocked me is how they thought about aging and death. I kept reminding them their goal should be to find cures for everything, no matter how hard it seems. I approach every engineering problem as solvable. Maybe I can't solve it right now with the tools I have. Maybe I can't figure out a way to solve it and will have to leave it for the next generations. To absolve yourself because something is inevitable is a coward solution.

So, no, thank you. If that's what it takes to survive, I want to be cut open, sliced, probed, and, when everything else fails and I finally die, I want doctors to learn something from my death. I want them not to give up and, if they can't treat some condition, go out and invent a way to do it. You don't give up solving a problem just because it's hard.

It's their job and it's reasonable for us to expect them to do it.

DavidMcLaughlin• 15 years ago

I think this is a great way to think about it. People who try everything to extend their life do not die in vain. Over ten people in my family in the last ten years have been diagnosed with cancer and so far we've only lost one. The person who didn't make it was the youngest of all the victims, but his tumour was also somewhere the doctor's didn't see that often - the bile duct near the liver.

The number of operations and suffering he had to endure still lives with me to this day and I could see why any doctor would choose not to go through this if they had to see such futile attempts at extending life end the same way. They flew in special equipment from the USA that was deemed highly experimental and would cut him open and try it out, only to have to cut him back open a few weeks later to remove what they put in. They tried surgery after surgery in the hopes something would be successful. They did not save his life but I like to think they at least learnt something about a cancer they simply don't see that often, that gave the next person a better shot. When they finally told him there was nothing more they could do, he asked them to stop all further treatment and to let him die on his terms.

The outlook for patients with breast, stomach, lung, testicular, skin or any other form of "common" cancer used to be as bad as pancreatic or bile duct cancer, but these days it's not a death sentence and a lot of people had to lose hard fought battles to get to this point.

gravitronic• 15 years ago

Every single one of us are going to die at some point. If you were a doctor and your goal is to "find cures for everything" then your eventual success rate over your career would be 0. Do you realize how hard it would be to do that for your entire career if you approached it thinking you could beat cancer?

You don't say in your post if your relatives were practitioners or research doctors, but if you're putting it on a practitioner to think they can beat the (studied) odds every day it is unfair in the least.

We are greatly indebted to the people who choose careers this stressful that benefit everyone else. You don't need to blame them for the current state of medical science. Trust me, they do it to themselves more than enough.

rbanffy2• 15 years ago

Since my father died, 43 years ago, many types of cancer were defeated. He wouldn't die today - he would undergo chemotherapy, radiotherapy or surgery, would go bald, but would live to see his grandchildren.

philwelch7• 15 years ago

How old are you? Have you ever been hospitalized? Undergone surgery? Had other invasive medical treatments?

anigbrowl4• 15 years ago

their goal should be to find cures for everything

That's certainly a medical scientist's goal. It's not all the same as what I expect from a regular doctor, whose job it is to look after me - making a best effort to find or suggest cures where that is practical, or to minimize my suffering where it is not.

RobbieStats• 15 years ago

I'm conflicted about this. On the one hand I don't want to be hooked up to a ventilator or go through extreme suffering to prolong life. On the other hand, my grandmother (who recently passed away) went through late stage breast cancer in her mid-50s, lung cancer in her 60s, had a severe heart attack in her 70s and died in her 80s. It was so bad one time the doctors told us she would die in a matter of days. After she recuperated, she lived another 8 years. She was a tough bird.

How many times have we all heard: "The doctors gave him 6 months to live and that was 5 years ago". So if I knew I could go through 3-6 months of severe pain and get another 5-10 years of high quality life with my family, I'd probably do it. The problem is you may go through 3-6 months of severe pain and then die in month 7.

Right now being in my mid-30s and with a young daughter I enjoy, I'd take on the fight. If I was in my 80s, probably not.

mikeash• 15 years ago

How was your grandmother's quality of life in those last 8 years after the doctors said she had just a few days left?

As for "The doctors gave him 6 months to live and that was 5 years ago," keep in mind that you get a horribly biased sample. People don't generally go around saying "The doctors gave him 6 months to live and he died 6 months later," even if that may happen far more often.

ck2• 15 years ago

Sometimes knowing too much can be bad for choice making.

As a coder, I worry every time I drive that the computer could accidentally fire the airbags because of a bug in a poorly coded sensor (this happens far less frequently now but when airbags were first introduced people were killed/injured periodically http://news.google.com/search?q=airbag+recall+deaths ).

Not the best example but things like this do affect choicemaking and corner-cutting. It's like the fable of the plumber's plumbing, never being in good shape despite his expertise.

Hence doctors probably don't always make the best decisions about their own healthcare because they are either over-reacting, or under-reacting.

kghose• 15 years ago

Some people on this thread have harped on cost (and used it as a way to insert their own agenda about the economics of healthcare) but from my reading of the article it is really about being free to make an informed and personal choice about what the cost/benefit of treatment in terms of life quality vs life quantity is to you.

It is true the writer writes from the point of view of his own choice, but on a topic such as this, that is really the only way to do it authoritatively.

The point of the article, I thought, was to make us think - what would I do when/if the time comes?

conorh• 15 years ago

My wife is a surgeon and sees these situations constantly, a patient whose family has asked that everything be done for them. They spent months in the ICU hooked up to machines, incredibly uncomfortable and often, if they are aware, extremely depressed. And then they die. This is traumatic for everyone involved.

She (and I) would never go through this by choice. I can't stress that enough. This is not about money, this is about leaving life in the best possible way, on your own terms, with your family and as comfortable as possible.

msimonovic• 15 years ago

http://xkcd.com/936/

zeynalov• 15 years ago

False. Most of computers don't calculate every digit separately but they start to test most used words then other variables. This means, Igotoschool is much easier to guess than 8h9. Hacking programs have dictionaries and most of passwords are plain words.

thisisnotmyname• 15 years ago

It would be nice if the author provided a citation or two to back up the sweeping statements he or she is making.

js2• 15 years ago

Two related stories I thought of while reading this:

1. A Pacemaker Wrecks a Family's Life - http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.htm...

2. A Tale of Two Hearts - http://thestory.org/archive/the_story_111811_full_show.mp3/v...

The second is an audio program.

pingswept• 15 years ago

"It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment."

I strongly disagree with this part. Before patients become patients, the vast majority of us have no interaction with the health care industry and certainly no significant capability to influence it. Doctors, on the other hand, spend their adult lives working as professionals in the industry. To say that they, as a group, are anything but complicit is wrong.

Consider the "Fuck passwords" article[1] that's on the HN front page now. As a programmer who has dealt with passwords, the sad state of authentication is, in part, my fault. I could make the same excuse, "Well, the users don't want long passwords, and Facebook and G+ are part of the problem, and blah blah. I'm a victim of a larger system" That would be lame.

Like the doctors, I'm one of the professionals in the field, so it's my responsibility.

[1] http://news.ycombinator.com/item?id=3313790

dennisgorelik4• 15 years ago

Original URL does not work at this moment.

cache:zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/

iguanayou• 15 years ago

Is it possible that "get medical treatment" or "go in peace" is a false dichotomy?

radu_floricica• 15 years ago

Of course it is. The dichotomy is between going in peace and doing absolutely everything possible, regardless of costs, to live a bit more.

jballanc2• 15 years ago

For everyone contemplating the prospect of hospice care vs "fight to the very end", this study might be of interest [PDF]: http://www.nhpco.org/files/public/jpsm/march-2007-article.pd...

The salient point:

> For the six patient populations combined, the mean survival was 29 days longer for hospice patients than for nonhospice patients.

tptacek• 15 years ago

The CPR example that's used throughout the article is a bit weird, isn't it? Isn't CPR performed when someone has no heartbeat? What does it matter if you crack their ribs? It's only painful if the person survives.

I'm not debating whether people should attempt to prolong their lives with aggressive chemo, just picking a nit.

wvenable• 15 years ago

If I was in an accident or an illness today -- I'd want them to crack my ribs and so on. In 50 years or so, when I'm 80 and in poor health I'm not sure I'd want the same thing.

learc83• 15 years ago

Yeah that's the author's point. Chronically ill or terminally ill patients receiving heroic care, not an otherwise healthy 30 year old who has an acute illness.

If you're 80 and in poor health, recovery from broken ribs is likely to be extremely difficult and painful.

vacri9• 15 years ago

CPR is done on unconscious people who are not breathing. They may have no heartbeat, or it may be an irregular one. CPR shouldn't be done on someone that can feel the pain at the moment of the ribs breaking, correct.

AznHisoka2• 15 years ago

can someone please post this entire article or a cached version?? been trying to read what the commotion/drama is all about for the past 6 hours and I'm dying here...

pedoh• 15 years ago

What are the best ways to make our preferences to our loved ones clear? Is it sufficient enough to have a living will, for example? Are there documents out there that I should be carrying in my wallet, and do paramedics seek these documents out in an emergency?

philwelch7• 15 years ago

> What are the best ways to make our preferences to our loved ones clear?

Tell them. I would recommend going through scenarios with them. Everyone thinks of the persistent vegetative state, but it's very unlikely you'll end up in one. It's more likely you'll be days away from death and passed out in a haze of exhaustion and morphine, with a ventilator doing little more than prolonging this scenario. Do you want the ventilator removed? Do you want CPR if you're hospitalized for a terminal condition? What if you're hospitalized for a non-terminal condition?

> Is it sufficient enough to have a living will, for example?

It sure helps, so do that. But also make sure to designate one of your loved ones in particular as your power of attorney. Make sure it's someone who understands and is capable of carrying out your wishes. That person will stay in close contact with health care professionals and has the legal right to make any and all decisions should you be incapacitated. In my limited experience, no one even looks at the living will if there's someone with clear power of attorney telling them what to do.

This person has an even more important job, at least in the American health care system: they're often the only one who talks to all the doctors and has the big picture. If you're seeing five different specialists, and they're all talking about their own specialties, no one is necessarily in charge of the big picture. In the outpatient world you have a primary care doctor, but when you're hospitalized, this guy's out of the picture. There is probably a hospitalist in charge of your care, but just like the nurses, the hospitalists rotate on shifts, and don't really coordinate with specialists so much as just trying to keep you alive. You need someone to be power of attorney, and to take the job seriously. One of the striking things, to me, about Steve Jobs' biography was that even for him, this was true--his wife was the one coordinating the doctors and keeping in charge of the big picture.

> Are there documents out there that I should be carrying in my wallet, and do paramedics seek these documents out in an emergency?

No. I've had paramedics at my house for my dad twice, and they never looked in his wallet. On the other hand, I was there both times.

The job of a paramedic is to stabilize you, gather whatever information they can, and take you to the ER. They probably don't give a shit about your wallet or your cell phone. Whatever procedure there is for identifying someone's next of kin and finding their advance directives, it's done in the hospital. Most of the time they just ask you, if you're conscious, and they ask whoever is physically with you at the time. They would only resort to searching you and your effects if you were completely alone, or if no one around you knew anything or anyone. So designate your power of attorney and designate that person as your emergency contact at work. If you don't live with that person, make sure a neighbor or roommate or someone else you live with or close to has that person's number programmed into their phone and knows to contact them. You want a person you trust, not just a tattoo or bracelet or document, in charge here.

gbak• 15 years ago

For some reason the site is down and the cache link on google takes a while to load. For everyone that wants to read it I created a public Google Docs file with the article. You can access it here:

https://docs.google.com/document/d/1yL1659zNXQ7M9uXIcRrcu9dJ...

boneheadmed• 15 years ago

I'm a medical doctor and I'll never forget what one of our respected (and elderly) liver specialists said when asked what he would do regarding a patient with a liver cancer with a particularly poor prognosis. During a roundtable discussion, various younger doctors came up with lengthy suggestions and lots of different chemotherapy regimens, tests, etc. When it was this doctor's turn to speak, he said: "Well, if I were to put myself in that man's shoes, I would go to the store, buy a case of fine liquor and drink myself happy for the next few weeks until I'm gone."

He had seen enough "therapies" to know enough when to forgo them.

pauncejones• 15 years ago

Hospice nurses helped both of my parents die as quickly and peacefully as possible. My father had congestive heart failure - a slow death over months, and my mother had dementia, and eventually started losing the ability to control her basic functions like breathing and swallowing.

If it weren't for the kind advice of my mother's doctor, who instructed all of her caregivers NOT to allow her to be taken to the hospital or be picked up by an ambulance, she might have ended up in a vegetative state in a hospital as well. He explained how it's a hospital's duty to do everything in their power to resuscitate someone, regardless of whether it's really humane or not.

It was awful watching them both die, but sitting with your family while you're given liquid morphine is much better than going through a frightening, painful, lonely death in a hospital.

maurits• 15 years ago

Very interesting story, but I do wonder if its assertions universally hold.

This looks like an excellent research question for the guys at freakonomics (http://www.freakonomics.com/blog/) to me.

martin1b• 15 years ago

While this article is interesting, it should make clear that basic necessities for life MUST be maintained. Everybody needs food and water to live by ordinary means, all medical technology aside. However, life support is not required and is considered extraordinary.

Quality of life is something to achieve with the inclusion that these basic needs are met. If not, the quality of life is a personal opinion and can be interpreted in any way, from conservative, to ridiculous.

How Doctors Die

Related Stories