Thanks for the 60 years of marriage, honey, but I have to cut you loose.

NYT ran a story this weekend about the practice of “spousal refusal” — that is, one spouse refusing to pay for the other’s long-term medical care (think nursing home) so that the ailing spouse can have the care covered by medicare. Which it otherwise wouldn’t be if they have assets of more than $110,000. (Assets including, you know, the money you were planning to live on for the rest of your life, since you’re retired, and stuff.) Nurse and lawyer take a look at some of the complexities of this practice — which seems heartless, but then, so do the alternatives, no?

Nurse: Yikes! Well, my first instinct is, can you blame ‘em? The cost of nursing home care is so outrageous, and it’s true that medicaid pays less than a regular consumer, so I totally get the instinct. If you’ve saved your whole life for a comfortable retirement and then you are basically S.O.L. because your spouse has a particular kind of illness that medicare won’t cover the cost for, that is pretty lousy.

Lawyer: I wonder if the consequences of signing a refusal form like that are limited to health benefits, or if they endure or extend. (In other words, is there some kind of “penalty” you end up paying?)
It also made me wonder why the man in the story who was being sued by the state hadn’t just transferred more of his assets. If the whole point was saving for the next generation, couldn’t he have avoided the problem by giving as much of it to his children/family as he could (depending on tax situation?) I’d also note that surely that suit could settle for far less than the cost of the care, making this kind of thing economically efficient for the refusing spouse.
Nurse: The counter-argument presented in the article talks about millionaires gaming the system. . .which I see is possible, but probably not really the issue. It’s more about people who made a lot of sacrifices to amass some savings who are never really going to see it now.  I don’t think it’s really a good thing to essentially “cheat” this way, but what you are allowed to keep and still be covered by medicaid isn’t super generous. . . and it sort of discourages saving, in a way.
Lawyer: Sure does. (If we assume that people are thinking about this and planning for it. Which some people are.) Why don’t they raise the amount of savings you’re allowed to have, and still qualify? It’s $110,000. That is… not much, in terms of life savings for retirement. They could set it considerably higher, avoid the “millionaire problem,” and keep people’s savings from being wiped out by catastrophic illness. This is crazy-making because of course spousal refusal is no kind of solution to the huge problems we face. And it might seem to make our health care budget crunch worse. But for the people facing the choices at the time, they have to do something.
Nurse: So. . . let’s reform the system! (that is apparently my standard answer, no?). You know what’s cheaper than nursing homes, has better outcomes, and better patient and family satisfaction? Home care! Day programs! There’s a place for nursing homes, we need them. . . but they aren’t the only option in a lot of cases, but they may be the easiest to set up, or the only one that has some insurance benefit.
Lawyer: Love it! The problem isn’t refusal — it’s that the cost of care if way too high. The article mentions that in New York, home care is covered by the same kind of benefit. I wonder how the decisions get made — I imagine it’s not by the patient/family, given your info on satisfaction.
If you were going to design a policy, how would you do it? Who gets home care and who goes into a nursing home? By disease? By preference? By. . . what? Are the decisions made by people who have financial incentives one way or the other?

I like this solution because it seems like it shouldn’t be controversial. It… works better AND costs less? AND doesn’t involve letting a government official appear to be making very personal decisions for you? But then, we’ve had all kinds of good ideas that can’t get any traction. The political system is busted. Beyond belief. Excuse me while I go bang my head against the desk for a few hours before I start working on solutions that won’t involve congress.

End of Life Discussions. . . with your congressman?

NYT has an article about a new NY law requiring doctors to discuss end-of-life and palliative care with terminal patients.

Lawyer: My first reaction is that a law that requires information to be shared seems like a relatively minor step. No one is changing the rules about who makes decisions — they’re just requiring that information be presented.

But then, how would we compare it to abortion laws that include mandatory statements that doctors have to give to women seeking abortion? The problem we quickly run into in the abortion discussion is about what counts as a fact. And this article touches on that — doctors often can’t tell how an illness will progress, or how long a patient has to live.

Nurse: Totally true. Doctors are terrible at telling how long a person has to live– although it’s much easier to see someone with a terminal illness and say that they will surely continue to decline. It’s the timing that’s really often the unknown. So. . . that seems to point to a good role for palliative care. “We can’t cure your illness but we can make you feel better for the remainder of your life, whatever that may turn out to be.” (Intresting, especially, juxtaposed with the recent study showing that palliative care actually may extend life.)

Lawyer: I did a little research on the specifics of the bill — what, exactly, it was requiring, and how specifically it was defining the required information. It was pretty broad — it defined a terminal patient as one who can reasonably be expected to die within six months with or without treatment, and the required discussion is described like this:

If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling  regarding palliative care and end-of-life options appropriate to the patient, including but not limited to: the range of options appropriate to the patient; the prognosis, risks and benefits of the various options; and the patient’s legal rights to comprehensive pain and symptom management at the end of life. The information may be provided orally or in writing.”

It also allows for a practitioner unwilling to do this to refer the patient to another provider. A few things strike me: it still allows a fair amount of discretion for the docs (in terms of what’s appropriate to the patient), it requires them to OFFER, not to actually have the discussion if the patient doesn’t want to, and it allows for doing it orally or in writing. These provisions allay some of my concerns about parallels to mandatory info in abortion laws.

Nurse: I think people are less likely, (although still not totally unlikely) to have deep-seated moral ideas about palliative care than they are about abortion. We’re not really talking about “pulling the plug” (don’t get me started on that), but instead we’re talking about improving quality of life and helping patients to define their priorities as their options dwindle.

Lawyer: I’m curious, nurse, from your perspective, about why medical professionals don’t have more of these conversations without being legally required to. Because making people discuss something by legally mandating it might help some, but that can’t get to the root of the problem.

Nurse: A few reasons: they are hard conversations to have, for one. Who wants to sit down and say, “you’re dying. it will hurt. I don’t think our treatment will stop the disease.” Another reason: In a lot of areas of medicine, the goal is to “conquer” a disease, rather than to improve the quality of life for the patient. Particularly a specialist may feel compelled to try aggressive treatment after aggressive treatment and some of these physicians see turning to palliative care as a failure, especially if it means stopping other treatments (which it doesn’t always– and many physicians, patients, nurses, and families don’t realize this).

Also, the article touches on the fact that there’s a lack of training in palliative care, and that’s very true. Some providers just don’t really know how to go about it, or even really understand the goals and philosophy.

(Indicentally, I think that palliative care is a WONDERFUL place for nurses and advanced practice nurses to work. We as a profession excel at treating the patient, rather than the disease. It’s a philosophy of care that really resonates with nursing perhaps more than medicine).
And finally, you remember the whole “death panels” shenanigans, of course? Beyond just being manipulative, that whole incident displays a discomfort with approaching end of life care that is deep set within a lot of people’s minds.  That makes it hard to approach.
This is a very modern problem in a lot of ways– we have lots of treatments available, and we have managed to extend the lives of people who once would have been quickly killed by their diseases. These people live much longer with great pain and discomfort, some from their diseases and some from our treatments. We really have created a need for palliative care and I think we need a way to increase its availablity– but I don’t know whether a law will really help us to do that.
Do you, lawyer, think that’s an appropriate law, or do you think we need to trust the doctor-patient relationship a little more?
Lawyer: I’m torn. I think it’s important for people to be made aware of their options, and I don’t think that legally mandating it is the best way, but it might be the quickest way to get some change. As you mentioned, education for providers (and, indeed, for the public) is probably the “real” solution, but in terms of steps we can actually take now, I think this is probably a good measure. Because it keeps everything pretty vague, and only requires doctors to do things that it seems to me they ought to do anyway (it doesn’t, for instance, contain a script, or specific phrases that must be used), I don’t think it’s as invasive as it could be.

New York’s experiment with opt-out organ donation

Earlier this year, we posted about people selling their organs. Now we want to talk about people donating their organs. Or more specifically, the state assuming you want to donate your organs unless you’ve let them know otherwise. NYT’s always-thought provoking Room for Debate blog has a piece on a proposed New York law that does two things: (1) Makes it so that family members can no longer override someone’s clear wishes to donate his organs and (2) Assumes everyone wishes to be an organ donor unless they specifically opt out.

Nurse: Just some background and disclosures: I don’t know how the process for organ donation works in New York, but in AZ, any death in hospital gets called in to the donor network– even if we think there’s no way they’re a candidate– and they decide whether to pursue it. The rest I am not really involved in (unless someone who’s brain dead is kept alive in order to preserve organs– but that’s a story for another day. It’s amazing how much goes into it.)

It seems like the first part of NY’s law, which ends the right of family to question/revoke a patient’s own designation as an organ donor, is pretty straightforward, no? I don’t see any real problem with that.

Lawyer: Agreed. I guess the argument against it is that if you’re dead, you can’t possibly care anymore, but your family members might — but seeing as we, as a society, allow people to leave wills, and generally honor them when possible, that provision seems pretty unproblematic to me, too.

Nurse: In terms of the opt-out versus opt-in– i’m usually an opt-in kind of girl. I want to have to check the box that says “please send me special offers” or “you can share my information.” But it seems like the calculus is changed by the fact that organ donation deals with a “greater good” in a way that marketing doesn’t. Is it wrong to assume that each person will make a contribution to saving lives when they themselves are dead? I’d say no, as long as there’s a reliable mechanism to opt out.

Lawyer: I’d tend to agree — we will always have default rules, and it isn’t clear to me that one way is inherently more of a default than the other. We have lots of other regulations about what happens to bodies after death (like where you can’t put them, for instance) — and there are systems for what happens to them if there are no other wishes — tough to say that one particular outcome should be the default for some reason other than a policy judgment.

Nurse: I have always thought, and several of the “panelists” in the NYT article point out, that most people are willing to be organ donors, but they don’t have their lisence with them when they die, their family doesn’t know and is too distraught to really consider it, they didn’t understand the process, or they never felt like checking the box or filling out the form or whatever it took. So we lose some potential donors this way. It also seems like opt-out would make it seem like a more serious choice. People might consider it. If you have to say “no, I will not donate my organs” you are making a deliberate decision in a way that you are not when you don’t check a box or sign a form that says you will. It will kind of tip the indifferent people towards offering something for the greater good.

Lawyer: That’s probably true, but I’m not sure that makes the choice more significant one way or the other. If it’s important to you, then checking the box feels important if the box says “Yes, I will be a donor,” and not checking it feels important if you feel strongly about that. I don’t see how it’s actually different, except that people who are on the fence might not bother to check a box specifically opting out of something if they don’t really care — in which case it wasn’t significant anyway.

Nurse: Of course, in this way, there will no doubt be people who do not want to donate whose organs get used. The same obstacles, like them not having their lisence with them or the family disagreeing, will apply to this opposite scenario. But is error on the side of taking more organs better than error on the side of wasting them? I’d say yes, but then again, I’d want my organs donated. YOU HEAR THAT INTERNET? NURSE IS AN ORGAN DONOR.

Lawyer: Oh, this is really the heart of it, isn’t it? LAWYER IS AN ORGAN DONOR TOO. But not everyone is. I guess I’d have to find some people who object and speak to them to understand the origin of the objection. Is it religious/spiritual? Certainly in some cases it is, in which case I think we should take that very seriously. If it’s more of a sense of ownership or privacy, well, I’d defer somewhat less to that — but I still find it worrisome. Probably more worrisome than “wasting” organs that the person would’ve wanted to donate (because there was no guarantee they could’ve been a donor anyway — depending on manner of death, matches, etc.) In other words, it seems to me thaty ou have an absolute right to NOT be a donor, but no corresponding right to BE a donor.

Nurse: I think one legitimate danger of opt-out is that people need to truly understand what the law is and that they have a right to opt out. There needs to be outreach, and it needs to reach people who are not english-language speakers and who are illiterate.  We need to be willing and able to protect individual rights even as we undertake a measure that is in service of the “greater good. “. Now we’ve talked in previous posts about whether you own your body, your organs, and your DNA, so I won’t open that can of worms, but. . . we have individual rights, let’s just go with that.

Lawyer: And I’m really not sure if/how we could accomplish that outreach to a level that would be effective. What could we possibly tie it to? How could we reach everyone who would need to opt out? Driver’s licenses simply won’t do in that context. Would it only be for people over 18? It could be tied, for men, to the selective service — but we can’t tie it to, say, kindergarden registration, or social security cards, because you can’t make that choice when you’re an infant or a 5-year-old. I’m not sure it’s insurmountable, and I’m also not sure it isn’t.

Nurse: One of the panelists, Kieran Healy from Duke, makes what amounts to a ridiculous argument that this law will rekindle fears that surgeons are standing over sick people with hack saws, waiting to harvest their organs, and that they might just take them even if you’re not truly gone. Um. . . won’t those people just sign the opt-out if they are truly so concerned? As Arthur Caplan from Penn (woot woot) points out, most people do want to be donors.  Healy also makes no suggestions. Maybe he’s against organ donation all together?

Lawyer: And what’s the source of the idea that doctors have more interest in one patient than in another? What interest does the doctor personally have in harvesting organs, unless the patient is his own kid? I agree. Opt out if that’s your nightmare.

Nurse: Don’t even get me started on Mary Ann Baily from Hastings, who seems to be arguing that organ donation is stupid and never works anyway. She goes into how there are so few suitable donors that this whole hoopla is kind of dumb– to which I have to say, sorry, but. . . doesn’t the small number of suitable donors make it MORE important to capture as many of them as we can? And let’s not just talk about the big-deal hearts and lungs and kidneys– We need corneas, too!

Lawyer: AND, transplantation will never improve if we don’t get to keep doing it. The more we do it, the better we can get at it. I mean, right? Nurse? I don’t really know. I’m just going on intuition here.

Nurse: But she, like Healy, is stuck on the notion that this system will create a culture of fear. People will avoid driving so that they don’t get into car accidents and wind up as organ donors because they didn’t read the form properly! Her suggestions? Well,  sure, we can do more to get consent in the current method, we can try to increase people who opt in (we tried that, no?) or here’s my favorite: let’s just develop better technologies to support people with organ failure so that they don’t need a transplant! Wow! I wish I thought of that! Thanks, Mary Ann Baily!

Lawyer: Ayeayeayeayeaye. ::glares north, in the direction of Hastings:: — I’m not sure that even merits a response.

Bottom line? I’m not sure whether I support this or not — but mostly on logistical grounds.

Nurse: I support it. Sure, it’s not perfect, but I think it has the potential to create more good than harm, and the harm is mostly avoidable as long as the person involved cares enough to check the right box. The agruments writen in the article were so much stronger on the pro side that i almost felt sorry for the cons. ALMOST.

Soda Tax

New York’s health commisioner is proposing an 18% tax on non-diet soda. (nurse sheepishly puts down her diet coke and breathes a sigh of relief).

Nurse: The proposed soda tax, as discussed in the New England Journal of Medicine, is suggested to have the power to not only raise revenue but also to affect behavior. Bloomberg shot it down, saying that there would be a huge public outcry. Nurse’s take? BOO HOO! That’s not a good reason. There might be a good reason out there, but that’s not it!

Lawyer: You tell ‘em, nurse! Solutions like this really interest me, because they go where the law cannot – you can’t make soda illegal, but you can make it less attractive. And to people who say, why should we have to pay extra for something, just because you say it’s bad for me, I say this: Why should we have to pay for treating your diabetes, heart disease, etc, that you were at much greater risk for due to your obesity caused in part by soda consumption?

Nurse: The easiest analogy here is to a tobacco tax, which overall has been enormously effective, and works to combat arguments such as “but, big corporations will kill us!” and “it won’t effectively raise money!” Of course there are some major differences too; I would imagine that more people drink soda than smoke cigarettes, the direct link between soda and disease is not there as it is with cigarettes. Now, people still smoke, but a combination of education and the tax has changed the picture.
Of course, the major underlying public health issue here is obesity, and more specifically, childhood obesity. The CDC puts out some quite alarming statistics which we’ve probably all seen before.
The NJMA article points out that education alone won’t be able to make significant behavior changes (it hasn’t, and neither have various other tactics). That’s a good point—but education has to be part of the package. A soda tax might help drive down consumption of sugary soda a bit, but replacing it with diet soda or even fruit juice will have other negative affects on health (artificial sweeteners are controversial, juice is high in calories). A tax would certainly be a way to reach out and put more punch behind a public health effort. (Now I’m picturing cigarette-style warning labels on soda cans. It’s funny. . . or is it?)
An example: A big gulp can have 64 oz, which could be nearly 800 calories—some people don’t know that, some people don’t care, and some people wouldn’t buy it with an 18% tax. I think that we need to make the first people aware, the second people scared, and the third people the target of things like this!

Lawyer: One more thought to toss in there… another effort to reduce soda consumption has been through eliminating the sales of soda in schools.