Where should the resources go?

[The other day, Rose and I were discussing the ethics regarding the allocation of medical resources in certain situations, and we decided that we’d like to write a joint post about it.  This is the first time we’ve done something like this, and I’m very excited both by the prospect of getting the views of my brilliant co-blogger and by the simple pleasure of writing with her.

One other caveat before I proceed — the patient described below is a composite, and I’ve tinkered with clinical details enough to comply both with HIPAA and ethical probity.  While the questions raised could pertain to any number of real-life patients I’ve encountered, none are actually described in exact detail below. — RS]

A little while ago, I wrote a post for the Inequality Symposium about how a relatively small percentage of patients account for a very high proportion of medical expenses in this country.  While the overwhelming majority of patients who fall into that category are elderly people getting end-of-life care, I have had a few myself who almost certainly land in that top 5%.  One in particular stuck in my head, and led to the discussion that spawned this post.

Let’s call my patient Jimmy.  Jimmy is 11 years old, and has a static encephalopathy.  That means that he has permanent, non-progressive brain damage, and in his case there is no meaningful expectation of any improvement in his mental status.  The exact cause of his brain damage is not clear, but is suspected to be genetic in origin and related to a very rare and obscure anomaly that has yet to be adequately described in the scientific literature.  He has shown no developmental progress in the many years since he joined our practice.  He is wheelchair-bound and completely immobile.  He will occasionally smile in response to being touched, but I have never observed him to make eye contact with me or anyone else.  He has no expressive language skills, is tube-fed, and has neither the ability to meet any of his self-care needs nor any likelihood of ever being able to do so.  He also has frequent seizures, which are refractory to every regimen that has been tried thus far.  By point of comparison, Rose’s child with the Ridiculously Rare Syndrome already has social and communicative skills that vastly surpass Jimmy’s, with much more hope of continued improvement than Jimmy’s parents can possibly hope for him.

In addition to his neurological condition, Jimmy has multiple other medical problems.  His kidneys do not function properly, he gets frequent upper respiratory infections that often land him in the ICU, and he has a chronic skin condition that flares periodically.  As time has passed, he has entered what could best be described as a slow process of multi-system organ failure, held at bay with aggressive medical treatments.  He is on a lengthy list of medications, some common and inexpensive and some new and very costly.  He requires suctioning to clear his respiratory passages, and either his parents or a home health attendant must deliver some kind of care to him almost around the clock.

At regular intervals, I am handed a huge stack of paperwork to review and sign, usually to renew and revise his extensive visiting nurse orders or therapy protocols.  I get subspecialist notes from the various clinics where he is seen for his myriad illnesses all the time, many of whom I am in occasional contact with.  While I cannot say for certain exactly how much his care costs, between his home care, clinic visits and lengthy hospital stays it is quite likely to run into the hundreds of thousands of dollars per year.  Were his parents forced to shoulder the costs themselves, they would be financially ruined in no time at all.

The last fact that seems important to mention regards his parents themselves, and their expectations about his prognosis and care.  They are wholly unwilling to accept anything but the fullest interventions for Jimmy’s conditions and illnesses.  Any suggestion that anything other than the most aggressive treatment available be administered is anathema, and any kind of DNR or similar plan is unthinkable to them.  Even inquiries into whether they would ever consider moving him from home to a chronic care facility are met with a highly emotional and very negative response.  If there were to be any restriction on the resources Jimmy receives, it would not be voluntary on their part.  Absent what appears to be a very unlikely change of heart on their parts, the only event that will lessen the expenses Jimmy’s care generates would be his demise, which could be imminent or years down the road.

If I’m to be fully honest, I will admit that I often find myself wondering if Jimmy’s care is the best way of using those resources.  When his parents describe him, they describe far more “Jimmy” than I can observe myself.  As far as I can truthfully report, I see a patient whose quality of life can only be described in speculative terms.  I want there to be a boy inside who is benefiting from all that is being done to keep him alive and as healthy as possible, but I just can’t say I believe there is.

When we talk about what we’re going to do about reducing healthcare expenses, much of the conversation (if it happens at all) revolves around elderly people choosing to eschew expensive efforts to prolong their lives past the point where it has ceased to have any quality.  I believe those conversations are important and necessary and appropriate.  But what about patients like Jimmy, whose quality of life seems so different to me than to his parents, who will never choose to give him anything other than every possible intervention to give him as much time as possible?  Is there any measure that we, whoever “we” are, can use to say that we need the resources he consumes for someone with more potential to improve?  Is there any sure grip we can get on that question that isn’t just the first handhold on a very greasy pole?

Rose, I am so eager to see what you have to say.

…

[Rose here]

So. Believe it or not, I have some thoughts on this. I’ll answer first with my philosopher hat, and then my mom of a kid with severe disabilities hat.

As a philosopher: medical resources clearly must be rationed. Indeed, it already happens, but it’s not well thought out. This is sad, but true. That phrase, “sad but true,” is a wan cliche, but I actually feel the pain of it almost literally every day. It is an absolute tragedy that each person cannot get the best healthcare she needs and desires. It cannot be afforded, individually or as a society.

As Russell has written, a giant chunk of money is spent on end-of-life care. More specifically, a huge amount of money is spent on preserving life at all costs, instead of comfort and hospice. After every cost-saving device that does not affect care that is practically possible is implemented (changing compensation structures, eliminating waste, modernizing record-keeping, what have you), end-of-life care is an obvious place to think about rationing rationally.

Of course, there are those who have given consent. (As an aside here, I feel like I know a good number of people who feel like they would not want every intervention thrown at them were the worst to happen, but have never done anything legal about it. It would seem in insurance companies’ interests to at least put a piece of paper in front of you specifying what end of life care you do and don’t want. When you decide ahead of time, you are far more likely to decide you don’t want serious interventions. Why don’t insurance companies do this as a condition of coverage, leaving full interventions as an option?)

So what about people who haven’t given consent? And whose family wants every treatment thrown at them? This is where you get into Sarah Palin’s “death panel” territory. Before even considering withdrawing serious interventions, I think two jointly necessary conditions must be in place: the patient must be degenerating and likely to die reasonably soon, and the patient must be non-conscious. Contra Sarah Palin, I am most certainly not talking about someone as ridiculously high-functioning as her kid with Down Syndrome appears to be. Not even about someone far far more disabled. I am talking about someone who actually does not have experiences. What is going on inside someone else’s head is, of course, a famously difficult question to answer. We try to infer based on behavior. Right now, each family decides for itself, which is a little odd when you think about it: the person is having experiences or not. The family is not an expert.

Jimmy’s parents have not given consent. He is degenerating. Is he having experiences? Russell suspects not. His family insists he does. I will say more about this when I am wearing my mom hat. But it does seem to me that at the very least any care that is focused on him should be preservative, not habilitative. Physical, occupational, and speech therapy is not warranted except where necessary for comfort rather than improvement. This, however, is probably not the bulk of his costs. I have a very hard time saying that we are justified withdrawing care without the parents’ consent. However. If it can be shown without doubt that Jimmy’s care is genuinely affecting the quality of care others receive, then I think we must take a look at rationing care in a case like Jimmy’s.

Okay, now my mom hat. I am a mom of a severely disabled child. Not Jimmy disabled. But wheelchair-bound and tube-fed. There are those who think his life is not worth living. I disagree strongly. In either case, he is clearly different from Jimmy. He is developing, not degenerating. He understands some language, makes a few signs, laughs, tries to get attention, plays with toys, gets around the room by himself. So his current self is not under discussion.

When he was first diagnosed, however, his prognosis was more Jimmy-like. He wasn’t responsive to the environment. At all. We were told he probably never would be. When he came home after months in the hospital, he required pretty serious care. He was on an apnea monitor which was constantly going off. He required frequent suctioning with a machine and supplemental oxygen as well. (Actually, we just moved a couple of weeks ago.  We called the healthcare company and asked them if they wanted any of his old equipment back, and they don’t. It’s ours to keep. So if anyone wants an infant suction machine, message me and I’ll hook you up.)  All this to say: I do have some clue about what Jimmy’s parents are going through. Not exactly, of course. My kid started responding to the environment fairly soon after arriving home. But an idea.

First off, the Katie Beckett Waiver is a Medicaid waiver that pays for children’s medical care who would otherwise be institutionalized. It is intended for them to stay at home. I’m guessing the Katie Beckett Waiver pays for at least part of Jimmy’s home care. This is not some liberal statist fantasy come true. It was actually approved by Reagan with the intention of keeping children out of chronic care institutions because it reduces costs. So if his parents want him home, let him stay home. It is, I understand, cheaper. If costs are to be cut, it will not come from sending him to a chronic care institution. It will come from actually denying him care.

Here are my thoughts on the broader issue: I thoroughly respect Russell’s skills as a diagnostician. And I trust him in this case. But. I have been in the position where I have dealt with a doctor who was clearly underestimating my kid’s abilities. It is absolutely infuriating. There is no question that it really does happen. Doctors make mistakes about this. I am very sympathetic to the frustration that Jimmy’s family feels. But also. I am a mom. And my kids are the most amazing beautiful talented kids in this world. The weird thing is? This other mom? She thinks her kids are the most amazing beautiful talented kids in this world, too. And we can’t both be right. Parents can get a little delusional. I am sure I think I see my kid doing or thinking something that really isn’t there.

Obviously, though, a much more serious problem than a delusional doting mother is when the doctors underestimate the kid. The risk of that happening, and thus withdrawing care, is terrifying. After all, many doctors thought my kid didn’t have much of a chance at even the life he has now.

Some other thoughts. These parents love their kid. They really do. You may not really believe it, but they do. Whose benefits counts? Only the patient? Do the families’ benefits count? I understand that’s hard to quantify the benefits of people other than the patient. But we tend to think of benefits and harms in this very limited way, restricted to the patient. Actually, entire families are affected.

Also. You get some serious moral cred for merely taking care of your child when you have a disabled child. People think you are so so awesome. But there is a flip side to that. And let me tell you a bit about it, although it is very hard for me to talk about. But I think it should be known that this happens.

After a few months in the Neonatal ICU, my kid was transferred to a chronic care facility. A neonatologist had suggested we institutionalize him. My kid’s genome is unique, and the only people with remotely similar genomes were Jimmy-like.

At the chronic care facility, the first doctor we saw suggested immediately that we would want a DNR. We said we would want to take a look at it, only ever even considering forbidding the most invasive of interventions. (We never signed it, and when my kid did have a near death experience, interventions were used.) Later, a different doctor called us at home just to say that he wanted to make sure that we really knew what we were doing with the DNR, because, it’s really serious. He was obviously hinting that he was opposed to it without saying anything outright. Then the next day, a third doctor and nurse were talking to us and were acting unpleasant and looking at each other uneasily. Finally, the doctor said in kind of a nasty tone, “We’re just kind of surprised is all. Most parents say they want us to do everything we can to save their kid.” (NB: We had not signed anything.) A hospital psychologist overheard them and sort of chased them away.

We asked about institutionalization, and were told that our other child might be investigated by CPS if we considered it. And again, faced a mixed bag of subtle encouragement and nastiness.

If you are a regular reader, I think you know how pleased I am that we didn’t go either of those routes. My point in recounting that painful time, and recalling that we even considered anything so horrible about someone I love so much, is to make clear how hard this is on parents. If Jimmy’s parents were to decide on a DNR or institutionalization, they would not only lose someone they love. As if that weren’t enough! They lose the admiration they have become used to. They would certainly face scorn and rejection from the medical community. Russell might approve; others would not. Quite possibly their friends and family would be more overtly scornful and rejecting. This is not minor. This is their support network, who would be leaving them at the most devastating moment in their lives. While they are grieving the loss of their son.

In short, I can understand why his parents refuse a DNR not only for their possibly false beliefs about Jimmy, but also for the sake of their whole family. I don’t think people realize just how hard this kind of decision must be on so many levels. We didn’t sign my kid’s DNR but we looked at it. And that is a document that you are simply not meant to be looking at. It goes against every parenting instinct you have, every belief about who you are. Your parents’ DNRs, maybe you could expect to look at. But your kid’s? How can you? What can you do?

In the end, even if Jimmy’s parents are costing all of us a fortune because of false beliefs, I can do no other than sympathize with them.