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.

Russell Saunders

Russell Saunders is the ridiculously flimsy pseudonym of a pediatrician in New England. He has a husband, three sons, daughter, cat and dog, though not in that order. He enjoys reading, running and cooking. He can be contacted at blindeddoc using his Gmail account. Twitter types can follow him @russellsaunder1.


  1. This is indeed a very tricky issue. With kids I am at a loss for how to proceed. They can’t make the decision for themselves.

    As for adults, I am naive about this but maybe Russell can answer: Would it be feasible for insurance companies to have members fill out some sort of survey which explains how they would want their care to proceed in certain situations and then charge them accordingly? For example, if I have a DNR on file could I pay less than someone that wants to be left on life support indefinitely?

    • That’s a good question, but one I am sadly in no position to answer. I think it would make sense to adjust charges the way you suggest, Mike, but that seems more a legal question than a medical one.

      • Or not even adjust charges. Just make you sign one or waive signing one as a condition of coverage. I bet a lot more people would sign one.

        • yeah, not even an opt-out. just a “here, sign or check that you’ve read it”

        • I signed the DNR for my father when he was dying from lung cancer; Mom was still in shock regarding the whole process.

          (He’d been diagnosed with lung cancer on May 16th, he was dead 3 days later.)

          I’ve also made a ‘living will’ and made it explicitly clear that should I be in a vegetative state ala Terry Schiavo that I absolutely want them pulling the plug. If there’s no expectation for any quality of life, I don’t see the reason to keep hanging around.

          Making the decision for myself or my husband wouldn’t take a second thought – because I know how he and I feel about things.

          Making the decision for my son or my daughter – I don’t know if I could treat it in the same manner – as hypocritical as it is. I think part of it is due to their ages (even though my daughter is an adult and on her own – she’ll always be my baby), as my son is only 4. Even if he had been born severely disabled, etc – I don’t know that I could just say, “Pull the plug.” on my child.

          I would most likely bankrupt myself to keep him alive and with me – despite how selfish that is of me.

          You’ll pardon me, I’m going to go hug my son now…

          • Darwy,

            I feel pretty much the same about everything you said. If I think about it, I too would very likely be one of those parents who holds on to hope even if the reality of hope was next to nothing. I guess that just comes with the territory of being a parent.

  2. I’ll flash back to the Terri Schiavo case because that seems somewhat less of a minefield than this one.

    Without getting into all of the weird political stuff that that case entailed (and it entailed a *LOT* of weird political stuff), the main questions that I had were “are there people willing to take care of her?” followed by “are there people willing to pay for her care?”

    I know that the answer to the former was “yes”. I never really got a satisfactory answer to the latter… but, if it turns out that the parents were also willing to pay for the care, I never understood why it was so important that Terri Schiavo’s care be terminated. I admit, if the parents didn’t have the funds to do this and expected/required a significant amount of government funding in order to provide care… well, I made jokes about how the Republicans finally found someone to whom they wanted to provide Cradle-to-Grave Health Care.

    Behind the barb in the joke against the Republicans there is the assumption that I have done some triage and came to the conclusion that Terri would not particularly be likely to have her status change no matter what benefits she receives while also assuming that there are folks out there who would benefit from taking Terri’s care and giving it to someone else.

    But it’s not like Terri’s parents could be expected to want to take care of, say, some child out there who needs raising (though it’s an easy barb to throw). The care they had to give was limited to pretty much one person. Some kinds of care are non-transferable.

    Which brings us back to the unpleasant answer to the unpleasant question of how much funding ought to be diverted to cases like Terri’s (let alone cases that aren’t *HALF* as clear-cut!) when we’re dealing with people for whom no amount of care will result in a change in status of the patient. To answer that unpleasant question, I think I’d need an unpleasant answer to this unpleasant question first:

    What are we hoping to accomplish?

    • > What are we hoping to accomplish?


      We’re hoping that something magic occurs and we don’t have to make decisions like this.

      • Perhaps there is a point at which we could cease pouring evidence-based medicine resources into the hope black hole and point people instead toward more homeopathic remedies.

        Homeopathic medicine, as I understand it, offers exactly as much hope without all of the cost overhead.

  3. The overarching question is “Who has the mandate to disburse and deny the available resources?” Once that question is answered, with real names and titles attached, can get into the messier questions.

    Dr. Saunders points out the sheaf of paperwork associated with a Jimmy. Someone very much like him will eventually fill in the same sort of paperwork on all of us as we approach the end of life. Sarah Palin knew better than to wave the bloody shirt of Death Panels in front of the nation but she did it anyway. There are real death panels, convened in conference rooms in every hospital in this country. Some of us have sat around that conference table, with a big box of tissues in the middle of it. Already grieving, exhausted, beyond tears most of us, with physicians and nurses (often as or more miserable than the family) trying to explain our options. Ultimately, only two considerations drove the decisions my family made: attenuating as much suffering as possible and maintaining some dignity in the process.

    Tony Nicklinson just died of pneumonia. He suffered from locked-in syndrome and fought for the right to die. It was cruel to keep him alive.

    Late the other night, suffering as I often do from insomnia, I watched an old Joseph Campbell lecture on the Tibetan Book of the Dead. He explained how the dying process is the exact inverse of the practice of Kundalini Yoga. Where Kundalini Yoga brings enlightenment up the spine, through the various chakras, the dying process starts from the top down.

    The lama holds his finger to the dying man’s pulse, guiding him through the process of the annihilation of the self. Along the way, many buddhas and sentient beings invite him into their various paradises. If the soul is frightened or burdened with selfishness, it will refuse to get off the downward spiral until at last it enters the darker realms and ultimately, the weighing of the soul and the transmigration/rebirth process.

    The lama tells the dying man these visions arise from his own thoughts. Though I am a Christian and do not hold with these doctrines, it seems the Tibetan Buddhists have arrived a singularly wise conclusion, that life itself is but a journey, that the annihilation of the self, so stupid and selfish, desirous of pleasure and infected with the sickness of acquisitiveness, is to be desired, not feared.

    We are defined by how we care for each other. I cannot think of any other useful measure for wisdom and enlightenment. But beyond a certain point, and I cannot speak for others here, I wonder if we are all-too-willing to subject our most dearly beloved to the miseries of medical intervention, beyond any hope of recovery or maintenance of human dignity, from strictly selfish and self-serving ends, fear of losing someone we love, fear of death itself, the cowardly turning-away from the inevitable.

    • “I wonder if we are all-too-willing to subject our most dearly beloved to the miseries of medical intervention, beyond any hope of recovery or maintenance of human dignity, from strictly selfish and self-serving ends, fear of losing someone we love, fear of death itself, the cowardly turning-away from the inevitable.”

      I don’t wonder. I’ve seen people do it. The really hard part is about ten years later, when they finally finishing processing it, and they realize that they’ve done precisely that and figured out how to move on from the guilt. It can be soul-destroying.

  4. It all seems so much easier when you can say “There is a 99% chance this isn’t going to help”… isn’t it?
    Here, the idea of the treatments helping is indisputable. They’re just going towards someone we consider “less worthy” than others.

    In a perfect world, we have a reasonable amount of time given, so that cases like Rose’s child can be dealt with correctly (and also a reasonable number of “second opinions”).

    In a perfect world, we take into account parents’ desire and weigh it against the kid’s wellbeing and expectancy.

    • Some people want the 1%.

      Some people want the 1% so bad, they’ll take it even if the procedure is also 90% likely to make your remaining time worse.

      There’s nothing you can do to make people who are afraid of the loss, or of death. They have to figure that one out on their own. It usually takes a long time.

      • I take Kimmi’s point here. We aren’t talking about withdrawing care that’s unlikely to work. It’s likely to work. It’s just not likely to work on someone whose life most people consider worth living.

        • About the only thing we could do, if we wanted to here, is create objective measures of “how bad someone’s life is”, and use those to guide treatment decisions.
          which admittedly are a LOT easier when you’re talking finite numbers of organs.

  5. Great essay, you two. Man… this is rough stuff.

    I’m not sure what to say about the case Russell outlines. I mean, I feel for the parents and understand where Rose is coming from in her final comment. On the other hand, JB makes a very salient point. To what end? It’s not really about the dignity of the individual, is it? What individual? What dignity?

    We show more compassion to our pets. But it’s at least likely to have an end point and not terribly far down the line.

    Rose’s Ridiculously Rare Syndrome kid raises other issues. And I’m sorry but there’s no way for this not to cut close to the bone, Rose. Let’s say that he continues to defy the odds (with a unique genome who the hell knows what his odds are, anyway?). It’s all well and fine for you as the parent of a KID to devote your immediate life to his care. Are you willing… can you actually commit to the rest of your life?

    What if he outlives you (as children are supposed to do)? We have a group home for mentally disabled men at the other end of our block. There’s another one for women across town. It’s all part of the state system. At other facilities in a nearby town they teach them skills and they procure suitable employment and such. They make no such pretense with the residents in our town. These are the worst of the worst. Grown men and women who mostly can neither talk nor care for themselves in the most rudimentary way (think toilet training).

    The point is that your Ridiculously Rare Syndrome kid isn’t just your kid. He is also society’s child and you may at some point be completely out of the picture.

    I’m not sure where I’m going here and I’m not sure I even want to hit the “Submit” button… but you raised the question… This is about compassion, but compassion towards whom? The child or the parents?

    • It’s definitely not an easy topic. I have a dear friend whose son is a very low functioning autistic.

      She knows that it’s a matter of a few short years before he will have to be institutionalized – he’s nearly too strong for her handle now as a toddler, how is she supposed to restrain him from hurting her (or himself) when he’s 10 or a teenager? What about when he’s fully grown?

      I thank my lucky stars every day that I don’t have to make such decisions and that (knock on wood) I won’t have to. Looking at my son now (who for whatever reason is grabbing himself while he runs off towards the bathroom – he’s 4) and imagining knowing that I’d have to give up his care to others when he’s older is truly heartwrenching.

Comments are closed.