To resuscitate or not to resuscitate
August 15, 2012 8:41 AM   Subscribe

How do you reconcile end-of-life decisions with your partner?

Impending surgery made me realize that my will, living trust, advanced healthcare directive, power of attorney, etc are extremely out of date, naming a husband I no longer have and family members with whom I am no longer in contact.

In the process of updating these documents, I learned that my partner, a self-described hardcore skeptic and conspiracy theorist, thinks that organ donation and "do not resuscitate" instructions are very bad ideas. His view is that if you agree to donate your organs, you are more valuable dead than alive and they won't work as hard to save you or will tell you things are worse than they truly are so they can have your parts. He also feels that medical staff is already more inclined to go with DNR these days, that they don't need an invitation and encouragement to do so, and they should be instructed to work harder to save you, not the opposite.

I disagree with his views on both of these things, preferring to hope for the best from people in the medical field rather than assuming the worst. We agree that there is still a lot of discussion to be had on these topics, and I feel we may be able to come to some common ground if we hash out some specific circumstances...

...but in the meantime, I still need to update these documents ASAP. I had intended to list him as the one to make decisions in the event that I am incapacitated. Now I'm in a quandary.

He says because we love each other, we should trust each other to act in each others best interest. I tend to agree with this, but still.

We can't be the first couple who have had opposing views on these things - if you're in this situation, how did you work it out?
posted by thrasher to Human Relations (26 answers total) 4 users marked this as a favorite
Will he agree to follow your wishes regardless of what his personal opinions are? Do you trust him? If yes to both, no problem. Just write down your wishes explicitly (with your current views - they can always be updated later).
posted by randomnity at 8:49 AM on August 15, 2012 [5 favorites]

"Trust" doesn't mean you have the same opinions and ideas and beliefs; in this case, it merely means you trust your partner to carry out your wishes, of worst comes to worst. I'd go ahead and update your papers according to your beliefs about donation and DNR.
posted by easily confused at 8:50 AM on August 15, 2012 [3 favorites]

My husband too, has these issues. (He was a nurse for fuck's sake, he should know better.) But I trust him to do what I want (my sister also knows and will twist his arm if necessary.) Likewise, although I totally disagree I will honor his decisions.
posted by Ruthless Bunny at 8:51 AM on August 15, 2012

I dealt with this by offering to give power of attorney for medical directives / estate (such as it is, you get my guitar back, sis!) executor / burial arrangements to a sibling with similar views / more respect of my views instead of my spouse. Though we joke about "you can't complain after you're dead so I'll do what I want" it's not serious enough for either of us to actually feel compelled to fully go around the other that way.
posted by tilde at 8:51 AM on August 15, 2012 [1 favorite]

He says because we love each other, we should trust each other to act in each others best interest.

That, to me, says that he wants to do what he wants to do and doesn't want to do what you want to do. But his idea about how health care providers work is wrong. Much of the time health care providers don't even know about the organ donation status of a patient until they're dead. And if they let a patient die to get their organs they're angling for a nasty malpractice lawsuit.

And this? "medical staff is already more inclined to go with DNR these days"

Stuff and nonsense. Again, hospital that "goes with DNR" without the express authorization of the patient and/or his authorized representative is begging for a nasty malpractice lawsuit.

If you're serious about what you want for yourself, you need to set that down in clear and unambiguous terms. You need to make sure that the hospital staff knows what they are. But note that if you give your partner power of attorney, the hospital will probably be required to do what he says, even if you have a different advance directive on file. That's what power of attorney is and does.

Also, what the heck kind of person is a skeptic and a conspiracy theorist? One would think that one of those things would tend to undermine the other...
posted by valkyryn at 8:52 AM on August 15, 2012 [18 favorites]

He says because we love each other, we should trust each other to act in each others best interest.

The point of a medical power of attorney is not to act in the patient's best interest, it's to choose the option that the patient would choose if they were capable of making decisions in that moment. "Best interest" is way too vague, and as you've discovered, can mean very different things to different people. I think you need to discuss the issue of "best interest" vs. "as I would have wanted" with your partner, and if he can't agree to do what YOU would want, then he should not be the one listed on your documents as a decision maker. You can write explicit instructions for someone else and name them as your POA, if you have someone else who would be willing to follow your wishes. Your decision maker does not have to be the person you're closest to or your next of kin -- it can be whomever you choose to carry out your wishes.
posted by vytae at 8:54 AM on August 15, 2012 [4 favorites]

He says because we love each other, we should trust each other to act in each others best interest.

People who love each other can be trusted to honor the explicitly stated wishes of the other even if they don't agree with them.

He doesn't need to act "in your best interest," he needs to respect your decisions.
posted by headnsouth at 8:55 AM on August 15, 2012 [4 favorites]

His opinion is factually incorrect. The doctors who are working on you don't get paid extra when they give your organs to others. It is in fact illegal to sell organs precisely to avoid the creation of financial incentives that would lead to situations like the one he fears.

If anything, the financial incentives would go the other way, toward keeping you alive as long as possible so as to run up a bigger hospital bill. You won't need any medical services after you're dead, after all.

If he will not accept reality, then you have bigger problems and I would not be authorizing him to make decisions for you.

If you do trust him, then you don't need to change your authorization; you merely need to revoke it so that your ex won't be involved in such decisions. Your husband is already legally entitled to make these decisions for you simply because he is married to you, so having the document is redundant. If you do not trust him to make the decision you would want, then you need these documents authorizing someone who is not your spouse to make them.
posted by kindall at 8:58 AM on August 15, 2012 [4 favorites]

Response by poster: (point of fact: I am not currently married.)
posted by thrasher at 9:21 AM on August 15, 2012

I'd give it to a close friend, and tell your partner that you want him to be able to focus on taking care of himself instead of making difficult medical decisions that go against what he feels are your best interests.

As much as I trust my partner, I absolutely would NOT trust him to do something that went against what he sees as my best interests in a life or death situation. Meaning, I think it's sorta fucked up to ask someone to do something that they think might lead to your untimely death. Even if that's not true, that's how he'll feel, and it'll fuck with his head.
posted by the young rope-rider at 9:30 AM on August 15, 2012 [1 favorite]

point of fact: I am not currently married

This actually matters quite a bit. If he were your spouse, he'd be able to exert some control over your health care, and taking that away from him can be tricky. But because he isn't, the only way he gets to say jack about things is if you explicitly give him that authority in your documentation.

He's got zero leverage here.
posted by valkyryn at 9:30 AM on August 15, 2012

Response by poster: valkyryn: he is skeptical that medical staff has the patient's best interests as their priority. His conspiracy theory is that the financial bottom line is the driving factor behind the entire healthcare industry.

And as for billing, kindall, that doesn't mean they'll be able to collect. Unless the patient is rich.
posted by thrasher at 9:31 AM on August 15, 2012

But note that if you give your partner power of attorney, the hospital will probably be required to do what he says, even if you have a different advance directive on file. That's what power of attorney is and does.

Don't put him down as your POA unless you have absolutely nobody else to put down. People are going to pay far more attention to the live person yelling in their face than they are the piece of paper that you signed saying otherwise. I can tell you that from my dad's experience, and my mom not agreeing with the DNR he wanted. I wouldn't trust him in this case.
posted by jenfullmoon at 9:32 AM on August 15, 2012 [1 favorite]

I would reconcile this by finding a new partner who doesn't disrespect my critical thinking skills so much that he expresses a desire to act against my wishes as I'm hypothetically dying.

As far as having a conversation that might change your current partners mind? Remind him that you would refuse to donate his organs if that was what he desired, because they are his. Remind him that you will lobby for him to receive as much medical care as possible (and because this topic makes me pissy, I'd point out the case of Terri Schiavo, and how expensive that was for all parties). Remind him that though this would be painful for you, you would do it because you respect him and his wishes, not because he does or does not trust you.

Re:payment. If they don't perform a service, they can't (legally) bill. No bill, no chance of collecting. So more procedures does mean greater chance of collecting some amount.
posted by tulip-socks at 9:35 AM on August 15, 2012 [3 favorites]

Best answer: RN who works in a hospital here- a couple of points:
If you do not trust this person to make the decisions you want made, then he should not be your health care proxy. Is he willing to discuss these matters with you? It sounds like he is uncomfortable with discussing end of life/emergency decisions, and he is just trying to shut down the topic. I don't blame him for that. If he loves you, then he probably doesn't want to think about your potential death, but he still needs to. Keep in mind that if (god forbid) something does go wrong, he will be in a very emotionally charged place. If he cannot think/talk about these issues now, he definitely will not be able to deal with them if they come to pass.
DNR does not mean do not treat. It means that if your heart stops, chest compressions will not be done, and we will not shock you to try to stop your heart from fibrillating. It doesn't mean that you cannot receive medications in an emergency. It does not mean that cannot receive some respiratory support (Oxygen, BiPAP, CPAP). DNI (do not intubate) is usually a separate order nowadays, so you could specify that if you like. In fact, if you want anything other than "do everything to keep me alive no matter what," you should write that out. A number of states have the MOLST form, which specifies a virtual menu of options for end of life/emergent decision making- take a look at the New York State MOLST- (PDF) .
Good luck.
posted by brevator at 9:46 AM on August 15, 2012 [3 favorites]

His conspiracy theory is that the financial bottom line is the driving factor behind the entire healthcare industry.

It might be. But this particular theory about organ donation might be be more plausible if it had anything to do with the heathcare industry's actual financial bottom line.

It doesn't.
posted by valkyryn at 9:57 AM on August 15, 2012 [2 favorites]

I have end of life conversations several times a year in the hospital setting.

Leaving aside your partner's views on the incentives for organ donation (which, as you know, are not correct) and DNR orders, I can tell you that hospitals are deeply, deeply reluctant to go against a health care proxy's/next of kin's wishes even when the patient's preferences are clearly documented. You could have "I AM AN ORGAN DONOR" tattooed on your forehead and if your next of kin* didn't want you to donate, nothing would be done. On the rare occasions that a HCP or next of kin's decisions are so beyond the pale as to be actually causing harm to the patient, there are ethics boards and "difficult cases committees" and lawyers that get involved and everything moves very, very slowly and cautiously.

*in my state, health care proxies determine medical care, but next of kin determine organ donation status, on the premise that only dead people can donate organs and at that point there are no longer health care decisions to be made. This always struck me as a little weird although in practice they're often the same person.

I do occasionally speak with family members who say honestly "I wouldn't do it like this, but I know it's what she wanted" but those family members are rare and their ill family member has often been sick for some time and has had a chance to have extensive conversations about their wishes.

In reality, you can't really predict all the circumstances in which someone might need to make decisions for you, so in general, it's best to find someone whose general outlook on those things aligns with yours. It doesn't sound like that's your partner.
posted by The Elusive Architeuthis at 10:12 AM on August 15, 2012

Something to bring up with him: transplant surgeons are a specific kind of doctor, and would not be involved with your care should you end up in a hospital. Instead, you will have another doctor, emergency or otherwise. This doctor likely has statistics that he wants to maintain. The way he does this is by keeping you alive. In other words, while there might be someone, somewhere, who benefits if you die, the person in charge of your care emphatically does not. This is especially the case since healthcare in the US is paid for on a fee for service basis, which means that the doctor gets more money the more he does.
posted by Ragged Richard at 10:48 AM on August 15, 2012 [1 favorite]

Okay, your partner is not your spouse: therefore without a (medical) power of attorney, they have zero say in this. Since you have such widely differing opinions about your medical care etc., that could be a good thing.

Considering your impending surgery, yes you should name someone to hold your medical POA; it does not have to be your partner: consider a sibling or even the lawyer who draws up that POA. Tell your partner that you've done it that way "to take the emotional burden off your shoulders at a stressful time".
posted by easily confused at 11:17 AM on August 15, 2012 [3 favorites]

Find out what the law is in your state. In many states, “First Person Consent” laws dictate that a documented donation decision like a donor card, drivers license etc, is legally binding and does not require the consent of any other person upon the death of the donor. That means if a person has documented their decision to be a donor, families have no legal right to overrule it. Cite and more info here.
posted by littlecatfeet at 11:53 AM on August 15, 2012

Best answer: And this is why I have medical power of attorney for my mother and not her husband of 45+ years. She's confident that if she goes first that despite her express wishes, he'd hook her up to a car battery if he had to and keep her life-supported body in the living room and have cheerful conversations with it till he croaks too. After years of bickering she discovered medical POA and drew one up triumphantly. I've told her she better not die first and put me in this position but she offered a deal: we kids do this for her and she'll do it for us. Since the idea of being in a vegetative state gives all 6 of us the heebie-jeebies we made a pact. Done!
posted by fshgrl at 2:21 PM on August 15, 2012 [2 favorites]

if you agree to donate your organs, you are more valuable dead than alive and they won't work as hard to save you

When I was getting EMS certification, this question came up in class a few times, and the answer given by every single EMT there was: It is basically impossible to look at the wheezing, struggling person in the ambulance and think, "Hm, how about all those people we could save with her organs?" A patient who needs help in the here and now is more compelling than thousands of abstract mystery patients.
posted by ostro at 3:27 PM on August 15, 2012 [2 favorites]

The one dying gets to choose.
posted by FauxScot at 4:24 PM on August 15, 2012 [1 favorite]

If there's one thing I hate, it's people who believe whole-heartedly in unfounded conspiracy theories who call themselves skeptics. But that's a rant for another time.

If I were in this situation, I would have my brother be my health proxy, because I know he would do what I think is right for me, not what he thinks would be right for me. My hope is that there is someone in your life, family or friend, about whom you feel the same.
posted by Sidhedevil at 8:08 PM on August 15, 2012 [1 favorite]

Best answer: I'm a doctor and what your partner thinks is absolutely not How Things Work.

Doctors at large medical centers (where transplants are done) are almost all paid on salary. Doesn't matter how many patients are in the ICU, doesn't matter how many patients get liver transplants, they get paid the same. The hospital doesn't get paid the same, but on a personal level it makes no difference to us.
Not only that, but your chances of being an organ donor even if you really want to be one are unfortunately, very low. It's just the way our system works. In order to be an organ donor in the United States, you really have to die from some kind of traumatic brain injury when you're already in the hospital. If something bad happens to you outside the hospital that results in your death, or if you have a systemic problem like a bloodstream infection or multi-organ system failure, it is nigh impossible for you to donate organs (although you might be able to donate tissue or your corneas or something, but if your partner believes doctors would lie to you so that someone might be able to get a cornea transplant, he's truly truly jaded. Even if every single thing goes right from an organ donation perspective, and we've got a motorcycle accident victim who had a traumatic brain injury causing brain death and the rest of their body's in good shape and they're an organ donor and their family's OK with it and consents, if they go to the operating room for organ harvesting and get taken off life support and their heart doesn't stop quickly enough, the organs often can't be used because they have spent too much time without oxygen. This article explains some of the controversy that your partner is probably referring to (and I can tell you from a physician's perspective, I really don't understand why they need to wait until the heart stops at all - these people are brain dead regardless of how long their heart keeps beating, medical treatment for them is still futile). The point is, we really need as many people to be designated organ donors as possible because the need for the organs is so high, and the stars so rarely align correctly for donors' wishes to be able to be fulfilled in this regard.

In terms of the charge that "medical staff is more likely to go with DNR" - that may be true, for themselves. This article explores why medical staff, specifically physicians, often choose to be DNR themselves. Yes, I do feel like I'm assaulting patients needlessly sometimes/oftentimes, when I'm coding a 90 year old with renal failure and metastatic cancer. But I still do it every. single. time. And I will always do it unless someone can produce the official paperwork and put it in front of my face immediately that says this person is officially, legally DNR. Because otherwise there is no way of knowing whether the patient's preference was for me to "do everything" or not. And we always, always err on the side of treating the patient. Not because it makes the hospital money (I'm on salary. I could care less whether I'm putting a patient on comfort care or coding them until every last rib breaks, even if I'm getting a bonus based on the code being "critical care time", it's essentially insignificant on a per-patient basis and I would never make a life or death decision based on it!). Not even just because we fear lawsuits, although we do and that's a part of it. Trust me, we're doctors.... we don't know how to sit by and watch someone die. We do what we know, and that's hooking up every part of you to a machine that will flog the life back into you if it's at all possible.

Sorry for the long post, obviously your partner's accusations struck a nerve. Taking care of dying patients is very emotionally difficult and it's not something I'm doing just to pad my wallet or something. It's pretty offensive if that's what he's suggesting.

tl, dr: Your partner is wrong, and I think the fact that he is not planning to make medical decisions based on what you would want done, but instead on what he would want done, means he is not an appropriate POA.
posted by treehorn+bunny at 10:49 PM on August 16, 2012 [7 favorites]

Response by poster: treehorn+bunny, thank you very much.

Thank you all.
posted by thrasher at 9:53 AM on August 17, 2012

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