November 26, 2012 3:36 PM   Subscribe

"You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth."
posted by Baron Kriminel (45 comments total) 57 users marked this as a favorite
This is one of my regular responses to these stories. Get a good advanced directive, and get your loved ones to fill out the same, so you can minimize (but sadly not eliminate) the chance of this happening .....
posted by lalochezia at 3:48 PM on November 26, 2012 [2 favorites]

Every few months I decide to get a very blunt advanced directive set up and then I forget. I don't think I'll forget again.
posted by mochapickle at 3:51 PM on November 26, 2012 [1 favorite]

Oncology nurses would probably rival the ICU nurses in our opposition to that kind of care.

I really liked the honesty of this piece. It's the kind of opinion you usually only hear from a new nurse, as the writer pointed out, because the nurses who have been around longer have had to detach emotionally just to handle going to work. As a new nurse, you want to yell this information from the rooftops, so that all your family and friends will understand what you've seen, that "doing everything" is often the worst sentence you could put on a loved one.

I'm still in that awful honeymoon period of my nursing career too, I guess, when I want everyone outside the hospital community to know this information. But I think the only people who still read when I post things like this to facebook are my nurse friends, who all chime in with their agreement. It's frustrating to be in this healthcare echo chamber, especially when conversations about end-of-life care in our society are met with disingenuous cries about "death panels" and such. I guess we just have to keep doing our best to help people make informed decisions, even though our educational efforts sometimes feel as futile as the care we provide.
posted by vytae at 3:57 PM on November 26, 2012 [15 favorites]

...followed by one jackass after another in the comments talking about Obama Mind Control and Hospital-Initiated Euthanasia and how the problem isn't terminal care but Big Government. I can't stand it.
posted by Sing Or Swim at 4:03 PM on November 26, 2012 [7 favorites]

One thing that reassures me is that I purposely chose as my health care decider a friend who not only cares about me but has a demonstrated ability to be dispassionate about these decisions and who has seen firsthand some of the stuff you don't want to have happen.

I know most people feel compelled or strong-armed into choosing their most intimate family/partners as healthcare advocates, but I think it's wise to try to choose someone that you know has the true grit to make the choices you need them to. That can be a terrible burden for your nears and dears.
posted by FelliniBlank at 4:09 PM on November 26, 2012 [3 favorites]

Related, from Chris Satullo here in Philadelphia:
Ever heard of a guy named Dick Lamm? Once upon a time, Lamm was governor of Colorado. He earned the nickname of Gov. Gloom with blunt pronouncements like this:

"We've got a duty to die and get out of the way with all of our machines and artificial hearts and everything else like that and let the other society, our kids, build a reasonable life."

Lamm said that in 1984. He was right then, and he's still right now.
posted by The White Hat at 4:10 PM on November 26, 2012 [5 favorites]

My father died last year after a long illness. He had a DNR which the hospital ignored when he went into respiratory arrest during a hospitalization about a year before he died. They 'saved' him and sent him home with hospice care. His last year was a succession of increasingly acute exacerbations of his COPD and multiple hospital admissions. If the hospital had let him go the first time he wouldn't have suffered such a prolonged, painful death.

Is there a way to prevent this from happening to my mother or anyone else I love? I'd to know what to do now to prepare, as the DNR is a joke. My mom and dad had lots of conversations and my mom knew what my dad wanted and didn't want. She and Dad had been very clear at admission that he had an advance directive. But in an emergency, no one checks your paperwork.
posted by toastedbeagle at 4:11 PM on November 26, 2012 [6 favorites]

My grandmother suffered what seemed to be a serious stroke at the age of 89, and was resuscitated at the local hospital. Despite losing some cognitive abilities, and some mobility, she was sent home. She was never the same after that, and the next 4 years were marked by a steady decline in quality of life.

Incredibly, even after she suffered a stroke, my parents had to fight like hell to get her admitted to long-term care in a nursing home. She lived on her own, and didn't want to live with my parents (and they wouldn't have been able to handle her), so she spent most of her remaining life sleeping, with weekly visits from a "social worker" and my parents, who had to travel 3 hours one-way to see her.

Should she have been resuscitated? Probably not.
posted by KokuRyu at 4:40 PM on November 26, 2012

Chilling stuff... & brought into even more concentrated focus in this linked article: 'How Doctors Die'
posted by herbplarfegan at 4:42 PM on November 26, 2012 [10 favorites]

I was listening to a recent episode of a medical program where the host, a doctor, spoke about how doctors will sometimes strongly recommend courses of action that are considered to be "the best course" by doctors but result in consequences that the patient does not consider a good trade-off.

He interviewed a surgeon who had been advising a patient on pursuing an invasive treatment. The patient asked the surgeon what he, personally, would do if he were in the patient's place. The surgeon considered the question seriously and realized that while as a surgeon, he'd recommend the procedure, there was no way he would agree to the treatment as a patient, because of the extremely deleterious side effects and the tiny possibility of recovery.

I was very struck by the surgeon's honesty and wondered how many other medical professionals have similar thoughts.
posted by hurdy gurdy girl at 4:42 PM on November 26, 2012 [1 favorite]

Thankfully our state provides for legal suicide. It doesn't help those who can't actually drink the cocktail down but if I am lucky enough to have a choice in the matter and there isn't anything left to say iit will be adios.
posted by pdxpogo at 4:44 PM on November 26, 2012 [1 favorite]

Won't bore you with another sad story, other to stress that we as a family had discussed the end-of life options, agreed at what point resuscitation efforts were inappropriate , there was a living will that reflected this, and so when my Dad was in ICU and in a bad way last year, there was accord when the decision to release him was before us.

Make that will and discuss your wishes with your loved ones.
posted by Artful Codger at 4:47 PM on November 26, 2012

In the UK, we have a system called the Liverpool Care Pathway. There has been a great deal of controversy about it lately, but (I appreciate this is anecdotal) I can't criticise it all as a humane system of dealing with my mother-in-law, when she was dying at 98 after an ischaemic stroke (she had given a detailed advance directive). Although I'm sorry to say I didn't like her, she was nevertheless a very clever lady, and I'm going to do the same as her - I am f*cked likewise with metastatic cancer, and I don't want to be pointlessly resuscitated.
posted by raygirvan at 4:47 PM on November 26, 2012

4B stage pancreatic cancer, tube to suck stomach dry so it doesn't have to digest; nurse does a painkiller via the feeding tube... in one tube; out the other. Two days later; pops finally (as in end of suffering finally) dies. What a waste of technology and resources. I can still remember seeing the color as it went in one tube; and then with a sudden sucking noise; came back up the other. Nurse didn't blink or even realize what had just happened. Intensive.

Go figure folks w/out any directive or family members end up with the Dr. Filgrave treatment regimen.
posted by buzzman at 5:25 PM on November 26, 2012

hurdy gurdy girl, was the program you mention this episode of White Coat, Black Art?
posted by maudlin at 5:31 PM on November 26, 2012

Don't just make an advanced directive but also talk to your family, especially anyone who is going to be in a caregiving/decision making role. They need to know your wishes and be your advocate. We went through this most recently with my MIL last fall. She and her wonderful doctor had a long, very specific conversation the year before where he went through, in considerable detail, a discussion with her about what she would want in the way of interventions. My husband and I were present and involved in that conversation. The last year of her life was pretty rough with multiple hospitalizations but knowing what she wanted and having a really outstanding team of caregivers who respected those desires made it better albeit still lousy. She was very ready to go at her last illness and fortunately no one forced her or us to go through intrusive interventions then.

My two biggest takeaways having now been through this multiple times with parents and grandparents: be lucky enough to have access to a good hospital (am all too aware how much of that is luck, where one lives, one's insurance and wealth) and talk about these issues in detail in advance - also requiring luck. Also choose a nursing home with good food - at the end of one's life that matters even more than you might think!
posted by leslies at 5:42 PM on November 26, 2012 [1 favorite]

I wish those who vehemently oppose "Right to Die" measures a long life, filled with constant excruciating pain.
posted by oneswellfoop at 6:06 PM on November 26, 2012 [3 favorites]

maudlin, yes it was!
posted by hurdy gurdy girl at 6:08 PM on November 26, 2012

One can not be for assisted suicide and yet agree totally with the posted article. Maybe a lot of people who support the former are reacting to inappropriate invasive treatment.

I can tell you after seeing my husband's stepdad and my boss both lose their lives to a glioblastoma....well, if I ever come down with one, I am doing the bare minimum so I can enjoy what is left of my life because invasively treating it is like spitting into a hurricane.

As to the elderly, well, most elderly folks know that old people die. They should be permitted to pass at home, with loved ones, made as comfortable as possible. And sentimental idiots who want to "keep grandma alive as long as possible, do everything" need their fannies kicked, hard.

My mom used to say she wanted everything done....then I sat her down and we talked. I know that altho I would want her taken care of well, I refuse to put her through a torture chamber. Nope, won't do it.
posted by St. Alia of the Bunnies at 6:15 PM on November 26, 2012

When my 96 (!) year old grandmother started to decline, we had hospice come in immediately because none of us wanted to see her suffer through pointless medical intervention. A few weeks later, I guess she decided that she wasn't dying fast enough, so she took matters into her own hands and threw herself out of a second story window. The fall did not kill her, and had she hit her head at a slightly different angle, she would have been sent home from the hospital with only a broken wrist to show for it. She did hit her head on the way down, and despite the DNR we had on file at the hospital, the very earnest young doctor on call had her intubated by the time I got there. He started talking about brain function tests, and when the swelling would come down and nursing home care. I am slightly mortified to this day that I lost my shit in the middle of the emergency room but I must have been a big enough spectacle that he ran and got the head of neurology, who looked at my grandmother, looked at her chart, and then asked me what I wanted to do. 20 minutes later, she was in a hospital room, removed from everything, and we sat there for a few hours before she finally passed.

While I wish she wasn't driven to do what she did, she made a choice, and it's not anyone's place to tell someone they have to live no matter the cost.
posted by crankylex at 6:15 PM on November 26, 2012 [22 favorites]

We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke.

No, really? I would like to hope that it would help somewhat.
posted by ovvl at 6:24 PM on November 26, 2012

If you get nothing else from this article, send a small donation to your local hospice....
posted by HuronBob at 6:37 PM on November 26, 2012 [3 favorites]

My mother died in her bed. My father later died in that same bed. (Cancer, both.)

I am making an appointment with my doctor soon so I can sign the appropriate documents.

I would like to die as my parents did. My mother died within a day of seeing her first daughter's child (her first granddaughter); my father died within a day of having been reassured that his six children loved him and were thankful to him for their wonderful lives.

There was some pain involved, at least with my mom. But, they had good deaths. (I am aware that the Greek translation for "good death" is euthanasia, but, although I am fully supportive of this option, euthanasia was not necessary for either of them. It is more common than not to suffer to some degree before death. But, then, it is more common than not to suffer to some degree during any normal life on Earth. Your mileage may vary. Specificity, although difficult, has to be attempted in any DNR-type documents.)

Good luck to us all.
posted by kozad at 6:51 PM on November 26, 2012 [6 favorites]

My wife is a certified critical care nurse with decades of experience in cardiac intensive care. She sits behind me in the office to do her continuing education on the computer. Sometimes this involves watching videos and observing the symptoms displayed by stroke victims and figuring out how bad the stroke was based on the patient's speech and movements.

After one of these sessions I resolved to not quit smoking, drinking, or eating cheeseburgers because I want to make sure that the heart attack or stroke kills me.
posted by ob1quixote at 7:44 PM on November 26, 2012 [3 favorites]

I told this story once here, and I don't know if I have it in me to tell it again completely, but:

My grandmother's heart died when her husband did, in 1973, when a drunk driver in a garbage truck crossed a line and went head-on into a Dodge Dart. (His funeral destroyed my faith in God, and my mother's as well.)

Her body died in 1992.

In the 19 years between, she died slowly, by moments and inches, because she couldn't accept life without him, and she went away a little, day by day.

In 1990, her older brother admitted that he couldn't take care of her anymore - she couldn't get up the stairs without help, she couldn't handle so many things anymore - and we moved her into a home, and him into our home. (He died, three weeks later, in his sleep, and I believe that he felt that once she was taken care of, he could rest and that's why he died.)

The one problem I have is that these things don't go into how to deal with people like my grandmother, who couldn't remember she'd put on the water for coffee and once nearly burned the kitchen up, or who would start to wash the dishes and forget in the middle what she was doing and leave the water running for two hours. Is there a way to define when someone is just... gone?

My grandmother, no longer able to walk, put into a moving chair.
My grandmother, no longer able to recognize me.
My grandmother, no longer able to speak, fumbling with slices of apple brought to her by a man she doesn't know, her mind, her life, lost somewhere inside her head, just gone.

I don't want that for myself. I have a living will filed, copies with my brother and in my files where my housemates can find it easily, so that I can try to avoid that.

I know what horror is. It's looking into the eyes of someone who took care of you as a child and realizing that they aren't there anymore. I don't want to be that for anyone else.

I don't know if there's a good way to define that line - if there CAN be a good way - but that's almost as terrible a fate I can think of.
posted by mephron at 8:05 PM on November 26, 2012 [3 favorites]

Technology is a Faustian bargain. Life, in exchange for hell. Maybe we'd be better off living in caves running from lions who quickly cull the weak and sick. But at some time we made that bargain with technology and there is no going back only "forward".
posted by stbalbach at 8:14 PM on November 26, 2012 [2 favorites]

I was maybe 12 or so when I went on life support for several months, and I can testify that - to the best of my knowledge - everything the writer is saying is absolutely true. In fact, she even missed a detail that I personally found very significant - the thirst. One interesting factoid about patients whose organs are too damaged to digest food is that sometimes they may also be too damaged to process liquid, so instead of giving you anything to drink they just pump all your necessary liquids in through an I.V. tube. But even though your body is fine, your throat is not designed to go for weeks or months without liquid, so it feels like a perpetual thirst that just goes on and on and never ends. Even to this day, I still can't fall asleep unless I have a glass of water nearby, no matter how well-hydrated I am. Obviously I'm biased, but I think that unless there is a good chance of recovery (as there was in my case, making my treatment completely necessary), anybody who would knowingly subject a loved one to that kind of purgatory simply for the sake of keeping them alive is somebody whose humanity is questionable at best.
posted by wolfdreams01 at 8:47 PM on November 26, 2012 [9 favorites]

I have my advance directive not to my wife, who I don't want to burden with the decision, but to my friend who is a ICU doctor because he'll be the first one to pull me off life support when his clinical judgement tells him that I am beyond saving, and he'll send me on my way filled to the gills with fentanyl and Versed.

In my experience most ICU doctors know the difference between saving a life and prolonging a death, but it is the letting go of the families (and the lack of preparedness of the patients) that can make things really hard.
posted by scblackman at 9:00 PM on November 26, 2012 [2 favorites]

Stories and articles like this just make me so unsure about what to put into my living will--how can ii be phrased so that, if there's a chance of recovery, I get proper medical attention but if I'm just going to suffer until my brain finally gives up I get to slip away? I don't want to get in a nasty car accident and be left bleeding on the side of the road because I have a DNR. However, it's really important to me that I have some documentation (especially after reading these horror stories) since I both can't trust and would never want to burden my loved ones with the decision to let me die.
posted by zinful at 10:41 PM on November 26, 2012

While I can agree with the central premise of this article (that ICU stays are a circle of hell) I can't agree with the conclusion that everyone seems to be drawing; that the only sensible alternative is to refuse treatment. Having been to hell and back after suffering respiratory failure due to my neuromuscular disease, I've often wondered why there's so little focus on patient comfort in the ICU.

Most of the patients I’ve described were on ventilators, with plastic tubes pushed into their mouths and down their tracheas in order to provide respiratory support.

Yep, those endotracheal tubes are uncomfortable sumbitches. The edges are sharp and the corrugation cuts into your tracheal wall. Must it be so? I imagine they have to be stiff enough to withstand a collapsed trachea, but for pete's sake can't someone design them with softly rounded edges?

it is so physically uncomfortable that patients will use their last ounce of strength to pull the tube out of their mouth

It's not just the physical discomfort that's at work here. In the throes of respiratory failure, I clawed ineffectively at an oxygen mask I had asked for and been quite comfortable with just hours before. I asked a doctor about that months later, and he explained it was a reflex. The primitive part of your brain interprets the mask or tube as the source of the difficulty in breathing and tries to remove it.

but other critically ill patients who were previously awake and responsive become unable to speak while on a ventilator.

And no effort will be made to provide an alternative way to communicate, because this is seen as an unfortunate side effect and not something worth addressing. In my case, I had to grab someone's hand (thank goodness I still had use of it then) and slowly spell out that I wanted a chart of letters to point to. That took three days.

These days we have iPad apps and eyegaze computers that could restore a patient's voice immediately, and relieve the frustration of not being able to communicate when you're in pain. And if you're conscious and still have control of your bulbar muscles, you could use an uncuffed trach that allows you to speak... just not in the ICU, where doctors can't abide a single cubic centimeter of air going anywhere but inside your lungs. Messes up their records, I imagine.

Once intubated, patients are unable to clear their respiratory secretions—phlegm—and so we stick smaller rubber tubes connected to suction into the breathing tube, down their trachea and towards the entrance to the lungs themselves, in order to vacuum the secretions out of their lungs. You can imagine that this too is uncomfortable.

Worse than that, suctioning can rip out the delicate cilia, causing further damage and even more secretions, necessitating even more suctioning. Again, it doesn't have to be this way. There are non-invasive alternatives like the in-exsufflator that simulate a cough and don't further irritate or damage the lungs.

If a patient is ill long enough, these instruments will be replaced with a tracheostomy in the neck rather than a tube down the mouth and a feeding tube going directly into the stomach rather than down through the nose.

And sometimes the feeding tube is placed not because the patient can't chew or swallow, but because the staff doesn't have the time to feed them.

These patients often develop diarrhea, sometimes simply because of the liquid food they receive—cans of smelly, nutritionally balanced tan colored slush

If I ever do lose the ability to swallow and require a feeding tube, I'm skipping the formula and going for pureed real foods instead.

In addition to the invasion of tubes, ICU patients live in a world of bright lights and loud alarms, continuous stimulation.

Again, true. But I read somewhere (I believe it was on MeFi a couple of years ago) there's a group working to reduce the decibel level in ICUs. For instance, does the patient really need to be hearing the bleeps of each heartbeat from the monitor? That always made me nervous and raised my heart rate.

People pry open their eyes and shine flashlights into them, then pry open their mouths.

People need sleep in order to recover, but it's very hard to rest under those conditions. Only in a hospital will someone wake you up at 3 a.m. to give you a sleeping pill.

Refusing or limiting life-saving treatment because it ends up being painful and invasive is sometimes throwing the baby out with the bathwater. Why can't we focus on improving these procedures so that they aren't torturous?
posted by Soliloquy at 11:05 PM on November 26, 2012 [24 favorites]

Hope your ICU doctor friend outlives you and remains a competent decision maker, scblackman, else it will lapse to your nearest next of kin as a matter of acknowledged course (given you've lapsed from self-advocacy).

It's complicated; doesn't matter which angle you look at it, it's complicated. My old nursing field was slow stream rehab after traumatic head injury survival - sub acute. We'd take people still in comas, straight from ICU, with trachea tubes still in place, but no longer in need of life support machinery, stable survivors, gastric tubes, maybe a urinary catheter in place. Adolescents rendered fully dependent, mainly.

Their next near chance at death would be aspiration pneumonia or a choking event.

And we'd rehab permanently dependent people over years, some left with insight, some not, and support families while they broke down. There are definitely worse things than death in the family. However ...

have you ever attended a road accident scene and intervened to save someone as first response? Have you ever raced at any person in the street and attempted cardio-pulmonary resuscitation, without knowing how long that person's been down? Did you give any thought to the person's wishes should he or she ever be in such a predicament?

It's complicated. It is so complicated even the best laid plans go terribly wrong. I've nursed medically stable, permanently comatose people -- they're not dying -- some the result of family intervention on the back lawn at home ... heart attack while mowing leading to gross hypoxic brain damage post-revival.

Not all people die in hospital. Some are revived before hospital admission. Death can be a missed moment. A finger click.

The medical and allied professions are taught two contradicting responses. One is to professionalise the reflex to save, the other is to control their skilled reflex to save. On again/off again. Sometimes it's a fine and fast call, and it is not about who has what permission to make what call on behalf of the person in strife, (nor is it about the age of the person in strife). I've nursed profoundly brain damaged children, revived from clinical death by well meaning people in a frenzy to save.

(None of us runs to the aid of the dying person to expediently shorten the dying process. None of us assists death with urgency. And thank goodness. Life is precious despite all claims to the opposite.)

I agree with kozad, good luck to us all. So many scenarios ... so many opinions, a need to save reflex, and the need to teach ...

... training hospitals can be the worst offenders IMO. How else do generations learn an objective difference between vital and viable if not experience and measured changes in responses?

Incidently, the article worried me -- a lot. One of my continuous roles is to preserve dignity.
"If he doesn’t wake up when you shout, or when you shake him, what about when you pinch and twist his trapezius muscle, or grind your knuckles against his sternum for a while."
And talk about overkill. Bruises? Whatever happened to slight pressure on a nail bed with a rolling pen? Maybe skills are being lost.
posted by de at 11:11 PM on November 26, 2012 [6 favorites]

posted by Soliloquy at 16:05 on November 27 [umpteen dozen favorites −] [!]
posted by de at 11:21 PM on November 26, 2012

People who are at the end of their life and are being kept alive artificially have a way of shutting down. Fighting this process is not a peaceful act. Most of the patients I’ve described were on ventilators, with plastic tubes pushed into their mouths and down their tracheas in order to provide respiratory support. The tubes are taped to their faces, and patients who can move at all are usually both tied down by their arms and sedated when on a ventilator, because it is so physically uncomfortable that patients will use their last ounce of strength to pull the tube out of their mouth.
Oh, fuck, yes. Sandra had several trips to the ICU in the last two years as her immuno-suppresant drugs reacted badly to whatever else she was taking and she slipped into more or less severe comas and seeing your wife struggle to take out a tube while still comatose is not something you'd wish on your worst enemy. It didn't help that she had a reflexive, intensily physical abhorrence of feeding tubes, the kind they guide down your nose and into the stomach for intravenous feeding. That was just horrible.
posted by MartinWisse at 12:58 AM on November 27, 2012

This is my father's worst nightmare. When we were on our yearly Thanksgiving vacation someplace beautiful last year, relaxed and happy and healthy, we heard about someone on life support, and he pulled me aside and said, "If I'm ever rushed to the hospital and a doctor says he needs to put a tube in my throat so I can breathe, you tell him NO."

Three months later, he was rushed to ICU in septic shock from a mystery infection and very nearly intubated as I was catching a plane to be with him. I would have told them no, but I wasn't there. I don't know how much good it would have done, but I would have stood up for him.

Thankfully, they did not need to intubate, and after a few terrible weeks (and lots of annoying advocacy from me regarding his comfort), he survived. He was his old self, strong and healthy, a bit more gray, on this year's Thanksgiving trip.

This is what I'm thankful for: my father, whom I nearly lost, and the jolt of reality reminding me to get a living will and talk to my loved ones about what I want and don't want. In the end, it may not matter, but we can damn well try.
posted by swerve at 10:06 AM on November 27, 2012

My mom used to say she wanted everything done....then I sat her down and we talked. I know that altho I would want her taken care of well, I refuse to put her through a torture chamber. Nope, won't do it.

I'm all for educating people about the likely outcomes of having "everything done," so that they can make their own properly informed decisions about what kind of care they would want. TV gives people very unrealistic expectations, because people getting CPR on the beach or in the hospital on primetime shows almost always gasp and come awake, looking fine but just a bit tired. In reality, fewer than 10% of people who get CPR outside a hospital survive, and even in a hospital the stat is < 20%. Many who do survive have severe brain damage from the lack of oxygen while their heart was not beating. The public also doesn't seem to know how brutal CPR is: it cracks ribs, causes massive bruising, sometimes punctures lungs. It's awful. CPR is neither very effective, nor gentle. And the posted article does a great job of explaining the horror of intensive medical intervention once someone is actually in the hospital. When people learn these facts, they often change their mind about having "everything done."

That said, as a nurse I am just as distressed when a patient has a legal document that says "Do everything," and a family member says no. I'm distressed because there is almost always a sliver of a chance that something will work, at least temporarily, and I do honestly believe that some people would choose to take that chance. I'm distressed because nurses are taught that a patient's autonomy is our #1 ethical guiding light, but legally the next of kin can override the advance directive once a patient is unconscious. I'm distressed because I believe that FOLLOWING MOM'S WISHES provides more dignity than LETTING MOM DIE, even if everyone else in the room would choose to be allowed to die.

St. Alia, I bet you were just using strong words to help convince your mother. But I do hope that anyone whose family member indicates a strong wish that everything should be done, despite understanding the facts and risks and tiny chance of it helping... I hope that family would respect that decision as well. All these crazy interventions don't steal dignity just because they are extreme, they steal dignity because families realize too late that the patient would not have wanted them done. It's the loss of decision-making control over your own body that steals your dignity. So I do believe that a person can die with dignity in the midst of heroic though ultimately futile intervention, if that's what they truly wanted. People who truly want this treatment are rare, but I believe their wishes should be respected just as much as the people who decide to be DNR.
posted by vytae at 10:51 AM on November 27, 2012

Here's the problem:

The system either really wants you to live, or it really wants you to die.

We want to believe there's a middle ground, and there is: The system really wants you to live, but you are really clear that you want to die.

This is considered vastly preferable to the opposite. Maybe the system needs to admit the middle ground a bit more honestly.
posted by effugas at 8:51 PM on November 27, 2012

A huge part of our death rituals, it should be pointed out, really are for the service of the survivors. There's a reason that funerals are a human universal -- they provide a sense of closure and community not for the dead (who aren't there to experience them) but for those, stricken with grief, to comprehend the change.

One thing that struck me in this article were the families that avoided the decision. The default reaction to a death, at least in American society, is to figure out who to blame. Nobody wants to be seen as the person who made the call to "put Mom down like a sick dog", and so Mom suffers.

There's a reason the "Death Panels" meme was so effective. We spend a tremendous amount of money on end-of-life care -- perhaps ultimately the majority of all money spent. The system does not actually want to do this, but it also does not want a flood of Wrongful Death lawsuits. So it continually errs towards overtreatment, because the alternative really is to nudge people towards death (and the disturbing, gnawing sense in the survivors that they could have done more).

Like most things, it's complicated.
posted by effugas at 9:54 PM on November 27, 2012

I'm all for educating people about the likely outcomes of having "everything done," so that they can make their own properly informed decisions about what kind of care they would want

Yep, that's what I did.

I also had to talk sternly to my husband who before was in the "do everything" camp in reference to me. Hopefully I got through to him.
posted by St. Alia of the Bunnies at 8:00 AM on November 28, 2012

In my father's case, he had a DNR. My mother didn't respect it. To be fair, they thought he could be "saved" at the time and it was kind of a gray area, but in reality he spent 18 months in a rehab hospital trying to get rehabbed off a respirator, which wasn't possible for him to do. It took the hospital cutting him off and Kaiser moving him into a nursing home that we had to pay for ourselves (and it would have cleaned out the family bank accounts but good to keep him alive in a vegetative state) for my mom to finally agree to let him die.

I don't trust my mother to respect my wishes on this in the throes of grief--the woman saves everything. It doesn't matter if she knows my wishes or if I have a DNR, I think, she'll just keep clinging on. However, I really, really don't have anyone else I can have do it. My nearest relatives after her don't give a shit about me and I wouldn't want them on my documentation for anything, I'm single, and in all practicality, it needs to be someone who is a next of kin and is NEARBY to you (trust me, proximity is everything), which rules out my friends. And what happens if I have a friend signed up as mine, and then the friendship ends? Or the friend lives far away and can't advocate for me to die so well from there while my mother is there in person sobbing on the doctors pleading with them to save me?

Yeah, I still don't know how to solve this problem. It terrifies me, but....I'm stumped.
posted by jenfullmoon at 9:11 AM on November 28, 2012

jenfullmoon: Yeah, I still don't know how to solve this problem. It terrifies me, but....I'm stumped.
I feel the same way. I don't want to lay it on my wife or brother. The friends I trust to do the right thing can't be relied upon to be available in an emergency because of travel, etc. I wondered if there was such a thing as a Medic Alert DNR bracelet. It turns out there is, but I can't say if it would do any good.
posted by ob1quixote at 12:11 PM on November 28, 2012

> I feel the same way. I don't want to lay it on my wife or brother.

Rethink that. I don't know what you imagine you'd be laying on your wife. DNR has to be asserted fairly early, preferably before you die so that no-one does call a code blue on you. Likewise, "no further treatment, make comfortable" is an early-ish call. The worst case scenario is her saying turn off the ICU supports. That's the biggie because in many respects you've already gone, only you're so present.

It may take your wife up to 48 hours to feel ready. Is that going to kill you? During that time she'll talk to you, sit with you, touch you, maybe lay with you. She'll talk to doctors and nurses. She'll be given the time, unhurried, to do what she needs to do. She'll die a thousand deaths, cry with strangers, talk over you with strangers, and do a truck load of concentrated grieving in how ever many hours it takes her to let you go. But she will. And she'll be better for it. She'll include it all in her reverie.

Don't let someone else take what is her time, her partner, away from her. That's too too disenfranchising. Your brother will understand perfectly and no doubt will be there, too.

Think about it, good and proper.
posted by de at 2:47 PM on November 28, 2012 [1 favorite]

I know I need to write an advance medical directive, but I start thinking about the huge gray areas, and I sit in front of a blank page. If I'm irrevocably brain-dead, then stop treatment, that's easy. The problem is when treatment has some chance, unquantifiable, of succeeding. Where success means getting to some quantity of life and some quality of life that's not ‘normal’. What combinations of those two variables should mean no, and what should mean yes? I would make a decision for myself, but I have no idea how to communicate how I make that decision.

There's (at least) a third variable, which is the treatment, its unpleasantness and costs. For me that's a smaller weight. Without knocking anyone else's decisions, I can't yet see myself wanting to say "no endotracheal tube" or "no procedure X" as long as it's for a good enough chance of good enough outcomes.

The "quality of life" part is where I'm concerned that communication is across the widest gap between minds. People have such different estimations of what a person wouldn't want to live with. I've heard "If I can't wipe my own ass, let me die", which in my own opinion would be a poor reason to die. People flinch away from the idea of living with serious disabilities, and miss how completely livable the lives can be. And on the other hand nobody knows how unlivable a life may be, until they're in it. Maybe I'll brute-force it with a long list of my opinions of various situations, and when it doesn't cover the case that comes up, at least it gives some picture of my tastes.

(Yes, I should write down "if I'm irrevocably brain-dead, then stop treatment" as v1 and then faff around on v2 after v1 is in place.)
posted by away for regrooving at 1:49 AM on November 29, 2012

> If I'm irrevocably brain-dead, then stop treatment, that's easy.

If you're diagnosed irrevocably brain-dead, which IS in its very nature irrevocable, you ARE dead and any two diagnosing doctors will declare you dead (and issue a death certificate), and work with your family to help them understand why machines make you appear otherwise.

(These are very fine arguments for people to sort out by themselves.) Any treatment your body is getting beyond (brain-)death is not to support life while you do some recovering, but to support body organs and tissues. v1 might be a good place to mention organ donation if you're that way inclined.

But I'm not familiar with the v1 and v2 of your advance medical directive form, and I'm wondering if:
"If I'm irrevocably brain-dead, then stop treatment"
isn't a waste of v1. To my understanding it's like requesting:
"If I'm dead, then please consider me dead."
There's no advocacy needed for that call, they will diagnose you as dead.

Maybe v1 needs to be more about profound head injuries and the life-long deficits you may face if you're treated back to stability. Maybe that's what you don't want happening, so something more like:
If my prognosis post brain damage (of any type) is any degree of vegetative, then do not medically stabilise me, but cease treatment immediately. (Organs ... blah, blah.)
posted by de at 4:31 AM on November 29, 2012 [1 favorite]

I just figured out you were talking about variables v1 & v2, not specified sections of a particular form. Good thinking, faff on.
posted by de at 5:03 AM on November 29, 2012

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