How Doctors Die (opens in new tab)

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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'.

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.

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.

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.

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...)

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.

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.

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

"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.

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.

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.

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.

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.