Here’s a short but ineffably sad piece at PuffHo about a five-year old girl from Oregon, Juliana Snow, who has a horrible and terminal neurological disease that will end her life her very soon:
Juliana Snow has suffered from an incurable neurodegenerative illness called Charcot-Marie-Tooth disease, or CMT, since birth. [JAC: description of the illness here.] The child can’t move or eat, wears a breathing mask at all times, and is confined to the four walls of her family’s Portland home.
Juliana is sick of repeated visits to the hospital, and so her Christian parents have had a conversation with her about whether she wants to prolong the largely fruitless treatment, which buys her a few more weeks of misery, or simply stay at home and die in the presence of her family. The sticking point for me is that they’re telling her what I see as a lie: that she’ll go to Heaven, where she’ll some day be reunited with her family.
On her own website, Juliana’s mother Michelle recounts a conversation she had with her daughter:
Mom: You don’t want to go to the hospital, right, J?
Juliana: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].
M: I know. So if you get sick again, you want to stay home?
J: I hate NT. I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
J: (nods)
M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
J: But I won’t be alone.
M: That’s right. You will not be alone.
J: Do some people go to heaven soon?
M: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
J: Will Alex [her 6-year-old brother] go to heaven with me?
M: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
J: No, heaven is good. But I don’t like dying.
M: I know. That’s the hard part. We don’t have to be afraid of dying because we believe we go to heaven. But it’s sad because I will miss you so much.
In a later post, Michelle recounts what she told Juliana about Heaven:
We had taught Julianna our belief that there is a better place for her. In heaven, she will be able to walk, jump and play. She will not need machines to help her breathe, and she will be able to eat real food. There will be no hospitals. Very clearly, my 4-year-old daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again. I made sure she understood that going to heaven meant dying and leaving this Earth. And I told her that it also meant leaving her family for a while, but we would join her later. Did she still want to skip the hospital and go to heaven? She did.
PuffHo recounts how the parents’ wish to give Juliana the choice is controversial among medical ethicists:
In response to the mom’s blog posts, some have praised the family’s decision, while others have been vehement in their criticism. The issue has even divided the medical ethics community.
“This doesn’t sit well with me. It makes me nervous,” Dr. Art Caplan, head of the Division of Medical Ethics at New York University’s Langone Medical Center, told CNN. “I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”
Dr. Chris Feudtner, another renowned bioethicist and pediatrician at The Children’s Hospital of Philadelphia, disagreed with this sentiment, however.
“To say [Juliana’s] experience is irrelevant doesn’t make any sense. She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna,” he said.
In general I agree with Feudtner. What harm is being done here, even if we’re pretty sure that Juliana isn’t going to go to Heaven after she dies? How much of the child’s decision really rests on her notion that she’ll have a nice afterlife, versus on the reality of the medical torture she’s enduring now? This is a tough question, but I can’t bring myself to urge the parents (who, as Christians, wouldn’t do it anyway) to tell the child that when she dies, that’s it. This may be one of those rare cases where faith-based delusion is actually helpful.
When I was young, my 13-year-old cousin had liver cancer, and we all knew he was going to die. But he was told he had “pleurisy” and would eventually recover. Whenever I visited him in the hospital, I felt horrible, as if we were all participating in some hideous charade, and that my cousin really should be told that he was going to die. But he was 13, not 5.
As a nonbeliever, I think that Juliana’s parents are deluding her with false promises of her fate after death. But I see no way to prevent them from doing so, and, in truth, little harm in it. Would she seek more medical care if she knew death was final? Can a five-year-old make any kind of responsible decision about this? Should the parents have decided for her, without deluding her about Heaven?
These are difficult questions, and I have no answer, though I lean towards accepting the parents’ wishes. Reader are invited to weigh in below.
Daniel Dennett discusses this question in a 2007 podcast on FreeThought Radio with Dan Barker and Annie Gaylor. He thinks this is a time when a “useful fiction” may be justified.
I myself am utterly stymied.
In this case I am 100% with the parents. Anything to make what time she has left more bearable is worthwhile and a few untruths that she can take to the grave will not do her any harm.
Agreed.
agreed. It is so heartbreaking but this way lies more comfort for the child, which is all that matters.
Agree 100%. Absolutely heart wrenching!
I agree too.
And of course I agree too.
It’s a lie, but IMO an absolutely justifiable one. Of course the parents wouldn’t agree it was a lie. But I think, if the girl asked me “Is this true, that I will go to heaven” I’d do my best to say “Yes” as convincingly as I could.
(I had a total disagreement with someone else on this list on just this topic a few months ago, IIRC).
cr
(damn, WP ate my first reply, I think)
I’d agree wholeheartedly. It’s a lie (though not as far as the parents are concerned) but if the girl asked me “Will I go to heaven” I’d say “Yes” as convincingly as I could manage. And I doubt it would bother me, her problems dwarf any niggles I might have with my conscience. I’d feel far more guilty if I ruthlessly told her the truth.
cr
I agree. I would do the same.
It is as you say dreadfully sad. I sympathise with the parents’ decision. And I think Dr Feudtner has it exactly right. As far as the parents’ telling her she’ll go to Heaven and they’ll see her there one day – well, they believe in Heaven so from their point of view they are telling the daughter the truth as they see it. As a non-believer I’m sure they’re wrong but even so I can see the merit in easing the girl’s passing with the hope of a better place. As you say, what harm? It’s not as if she’ll ever know she was deluded.
On something like this, there never is a fine line on what to do. There are so many shades between black and white
I read about the same case on the CNN website, and went through the same mental gymnastics regarding what is the “right thing ” to do.
I am not sure telling a 5-year old they are dying is the right thing at all. The parents could simply bring the child home to die without telling the child the inevitable outcome. The child will know they are sick, but the concept of death need not be introduced.
I’m sure this child, having been told about death and Heaven, will have elevated anxiety about those foreign concepts, and that anxiety could be avoided by the parents by simply not raising the subject.
This may not be a suitable approach for an older person, and where that age cut-off should be would have to be decided on a case-to-case basis.
I’ve spent two years of my life among children with cancer. As it was over 30 years ago, most of them died. Children are much more thinking and alert than most of adults understand (or remember from their own childhood), and children who are very ill are much more mature than healthy ones. They want to know whether they are going to live or die. They want to prepare for death – like a 7-year old boy who wanted to select the music to be played at his funeral and to get a promise from his parents that they would have another child. Later I met some cancer children from a country where they were not even told that they have cancer and the word “death” was never mentioned. I especially remember one girl (she was already 12) who told me how she suffered from all the lies, how she knew that she had cancer and was forced to pretend, and how afraid she was that she would die and had nobody to talk to about it – just because she was not allowed to know.
I think we agree that the age of the child is a key factor. The 12 y/o you mention “suffered from all the lies”, and yet the 5 y/o in the example above is being lied to regarding the post death experience. The parents are making up a scenario of a “Heaven” that in their frame of reference would be comforting, but to a 5 y/o child would not necessarily be comforting. I would speculate that, to a 5 y/o, the net effect of discussing death, and post-death fantasies, would be increased anxiety. And I don’t think the right approach for a 5 y/o, in lieu of post-death fantasies, would be to start reciting Richard Dawkins regarding “we are the lucky ones to die because we were born…” etc. Arguably, the best approach for a 5 y/o would be to simply provide a loving home environment until the end.
This girl didn’t know the parents “lied” to her, and they didn’t know it either. So they could talk about it openly. The 12 years old girl I met knew her parents were lying to her, and they knew they were lying. Quite a different situation.
Children, even as small as 3 or 4, who are hospitalized for long periods, make friends there and when suddenly the friend is missing, they want to know where the friend is. Children talk among themselves. It isn’t all that simple that providing a loving home environment is enough. They know much more, even when they are quite small, they have questions and the questions must be answered. Death is not a subject you can avoid in such a situation.
I agree because for some reason I have very strong memories of childhood even when I was as young as 2. I remember often feeling condescended as if I didn’t have feelings of my own. As if I couldn’t understand things.
Children with terminal illnesses often do things to protect their parents as they know how devistared they will be.
Yes. I find Art Caplan’s faffing on ridiculous: “I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.” Apart from the incredible condescension and apart from being untrue (who really does understand death), what does he recommend? Telling the child that she will get better even as she can see she is getting worse?
I agree with you. Why would it be necessary to introduce the concept of death to a five year old? I am deeply sad for Juliana and her parents but the cynic in me suggests that the concept of heaven was introduced more for the comfort of the parents than the the child.
Yes, it sounds to me almost as if the parents were unwilling to accept the full responsibility for making the right decision. Rather, they think they can absolve some of their guilt by getting the opinion of the child.
Why ‘guilt’? The parents are in no way responsible for her situation. I’m sure they will have doubts and *feel* guilty whatever they do, but that’s different.
And who should have a better idea of what the girl wants than she herself? I’d applaud the parents for not forcing more suffering on her because they want to cling to her.
cr
I guess “anticipated guilt” would be better. I can see it your way as well. It’s a complicated situation. The question I have is what would you do if you as an atheist were in the parents situation? Would you borrow the myths of the dominant culture to ease here way forward? Would you try to explain what death was to a 5 year old who has none of her own?
If I was in the parents’ situation – which I hope I never am – I’d do whatever I felt necessary to ease the girl’s situation. That would include flat out lying if necessary. And I wouldn’t necessarily find that easy, I do have a strong impulse to tell the truth, so I’d have to remind myself that what I was doing was for the best.
I would also, I know, inevitably have doubts about whether my course of action really was the best for her – but that’s just me.
cr
Heartbreaking. I have to give the parents credit for not forcing her to prolong her life and her misery.
I agree. The suffering is real and death near. The fantasy provides comfort to the dying child and her family. This is a perfect example of why some religious delusions can be attractive.
This was pretty much the premise of Ricky Gervais’ movie The Invention of Lying: fantasy can provide comfort.
Honestly, under the circumstances, no harm, no foul. The situation is heartbreakingly tragic. There is nothing to be gained by trying to force a 5 year old to stare reality in the face, even assuming she were cognitively developed enough to understand it, which she probably is not.
I agree with the use of “Useful Fiction” as noted above. The child probably still believes in Santa and the Easter Bunny. In this case, her real life has been so traumatic, I’d join in with the promise of things being better after. It would be akin the large doses of morphine, it eases the pain of dying. Plus, the brain itself tries to ease itself by releasing a burst of dopamine before the finale. Seems we’re programmed for a hope that it’s not the end.
I don’t have a problem lying for comfort with a young child. But, I’m not sure there is any need to even mention death. The child is too young to understand it so why not simple avoid mentioning it? The idea that death is an end to suffering isn’t going to impress her if she doesn’t know what the word “death” means. Since death is inevitable, I’d be inclined to provide plenty of pain killer and wait for nature to take it’s course – all the while making the child as comfortable and anxiety free as possible.
Well, for adults, this is one for the assisted suicide for sure. But for this age, I don’t think I’d even tell her she is dying. As far as the parents telling her she is going to heaven – Not really a lie if they believe it.
I would be telling the parents to make sure not to have any more kids as this one seems to be all genetics.
Perhaps the Little People argument works when we’re talking about literal little people (small children).
Not literal; for me, the child within is sufficient.
I would not attempt to remove false solace from someone facing terrible suffering and certain annihilation.
The daughter of good friends of mine got lung cancer (she was 12, didn’t smoke, nor did her parents, but I’m sure god had a plan…). She survived for two years, with frequent treatment, and her parents had this kind of conversation with her after each bout of treatment. She chose to continue, saying that she couldn’t imagine the world without her (which I don’t take as a statement of narcissism, but simply the reality we all face when we think about death – the world will go on without us, despite the fact that in one sense our brains make the world). One accepts this at 60, though not necessarily with equanimity, but how hard at 13. Her parents are atheists, so did not even have the refuge of the comforting lie. I am sure they would have taken it if they could, but she was old enough to have known it was false.
Clearly the wish of the parents to make Juliana’s remaining days as fear-free as possible is well intended, and can be viewed as a kind act.
But that begs the question: should I as an atheist therefore use the heaven-as-comfort ploy if my five year old child were close to death? No. Does that make me pedantically unkind? I don’t think so. But I don’t know what equivalent comfort I could offer – maybe there just isn’t one.
I think there’s another consideration here, that of Alex, Juliana’s six year old brother. It could be argued that he also needs the comfort of ‘knowing’ Juliana will go to heaven, and to believe that some day he will too, to be reunited.
Should Alex have children, presumably there’s a strong chance he’ll raise them the same way. Where will it stop?
I too see no harm in the comforting fiction this child is being told. We wouldn’t prolong an animal’s life if it meant continuous suffering (except when done for the emotional benefit to the animal owner without regard for the pet’s comfort, which I have observed). I have nothing but respect for the parents of this girl in this case, and I speak as one who has lost a child.
The best part is that the child will never know she was lied to.. it is the fucking parents who have to live with that.
The worst part is the lack of honesty- you can comfort a child with complete honesty – you just tell them it will all be over soon and they will sleep comfortably. You dont have to tell them how much they will be missed that is for other parents and adults to share. But lying .. lying hurts the liar. I swear the whole idea of life after death is the most despicable and hurtful idea the most soul crushing selfish, feelings and wants and wishes denying bunch of crap. Fuck those self-serving assholes.
I would ask…How is it a lie if they believe it? If you believe there is cheese on Mars are you lying if you tell someone? Be a good idea to look up the definition.
I seriously doubt that a five-year-old kid has any understanding of what happens when he or she dies. Sleeping story is just as good as life-after-death story. Both of them are incorrect, but I don’t think that a kid would understand that there’s nothing after this life.
This story has hit me especially hard. I was diagnosed with CMT at age 30. Since then, I have had 13 surgeries to correct deformities in my legs and feet. This poor child obviously has a much more severe case of CMT than I, as it has affected her breathing, etc., but it makes me wonder if anything could have been done in the earlier stages. When I was a child, no one knew what was wrong with me. I wore a brace on my leg at age 2, because the pediatrician thought I was pigeon-toed.
There are various stages and types of the disease, and it can arrest itself. I consider myself lucky as I have read many, many horror stories about CMT. (My orthopaedist advised me to stop reading those stories.) I have also read many happier stories. There was a cyclist with CMT in the Paralympics a couple years back, so that was a nice representation. He won the Bronze!
Science is making progress with CMT though and, hopefully, it will be treatable soon. Maybe a case like this will bring more attention to CMT. Many people have no idea what it is (including many doctors I have seen over the years). Some people have it and don’t even know it. It is genetic. My brother doesn’t have it, but if he had children, they have a 50 percent chance of getting it. Those are terrible odds.
I realize I haven’t touched on the nonsense of what her parents are telling her, but I wish them all the best in any case.
And we wish you all the best in your case.
Thanks, Ken. I really appreciate that. I consider myself lucky. I have had a lot of success with the surgeries and really great doctors.
CMT wow i’ve had trouble walking for 12 years my son started to have the same difficulty with walking and balance.He saw a doc and was told he had CMT. Now both of us have no pain or very little. We actually have HSP Hereditary Spastic Paraplegia not CMT.Sorry to know you have so many problems with CMT.HSP affects only3-5 people in 100,000 why did i have to get who knows. As far as the little girl goes maybe a place like heaven is believable for her .
Hi, Rose. Thank you for your note. I have benefited very much from great doctors. I am glad you and your son are having no pain now. And, you’re right. Maybe this little girl believing in heaven is fine. Children have always had make-believe to get them through. All the best to you and your son.
I think it’s ok as she said she doesn’t want to die, but it seems that she wants to go back to hospital even less. It doesn’t sound like they’ve made heaven so tempting that she is looking forward to it particularly. And I guess her parents think what they are telling her is the truth.
Those parents are leading not just this child, but their other children and themselves, onto dangerous ground. The next time one of their children doesn’t like taking, oh, cough medicine or a vaccination, that child could say. “I’d rather skip this and have a higher chance of going to heaven sooner … ” — and what will the parents say then?
Oh, come on!
Oh? When I was that age, and was told about heaven, I wanted to go right away — I couldn’t understand why the people who had just told me about heaven got so angry when I wanted to do ANYTHING that would get me there faster, without my needing to wait as long as most people plainly had to.
There was such a case a while ago, wasn’t there, in a Scandinavian country?
But in this case I think I agree with most of the others here and Tim, in ‘Oh come on’.
Nicely though.
Well, they did tell her the truth since they believe that. If I believed that, I’d probably go there myself.
There is only one thing important in this situation: the easing of the pain and suffering (mental and physical) of this child. If a fairy tale helps, so be it. My guess is that most people get through the day living with some sort of delusion, perhaps harmless and non-religious, but a fiction nonetheless. So, to deny this child peace of mind in the name of “truth” is most cruel. If the delusional notion of heaven helps this child, I have no objection.
I’m not sure how her parents could’ve framed Juliana’s worsening condition without bringing up the sad fact she will die. If they told her that going to the hospital would make her better, that’s at best only a short-term truth. Her health will continue to worsen with or without hospitalization. Treatment may extend her life, but it won’t save it. And it sounds that the treatments themselves severely impact the quality of her life. Maybe there was a way for them to dance around the fact she is dying I just can’t wrap my head around?
If you die and cease to exist, you will certainly not be saying, “Oh no, I was so deluded about going to heaven!” It does not hurt her now to think that she will be going to heaven; and if there is no heaven, it cannot hurt her later.
My daughter is 4. Looking at that picture I just want to cry, cannot imagine what those parents are going through. I would invent a faith I do not have just to console my daughter in such a situation, I guess.
They are doing the right thing, based on their beliefs. As some have rightly pointed out, the effect on the brother could be worrisome, and it’s nothing unique to this situation. Many Christian parents are faced with a young child asking why wait if heaven is such a great place.
Compare this comforting approach to those who deny care for treatable conditions or worse, those who glorify suffering (e.g., Mother Teresa).
This is so sad.
As a parent I tried to tell my children the truth as much as possible, but sometimes we want to keep harsh realities at bay, realizing that eventually they will have to deal with it, but it’s not necessary for them to deal with them right now. Even now, when my youngest is 28, I wonder if that was the right thing to do.
I have no doubt I’d ask my child what they want to do, but I don’t know if I’d tell a four year old that she’s dying, so it might very well necessitate a lie of some sort.
There is little difference between telling her she’s going to heaven and telling her she’s going to get better, have a complete recovery and soon be running, dancing and playing.
But telling the child that lie earlier would be cruel, telling her that she will be better one day, playing and running with other children, never today, but soon. Like promising the child is going to Disneyland, but always someday, never today.
There are times when our choices are limited to very bad choices. What I know is I’m very glad I was never in the position those parents are in, and I can’t begrudge them their decision.
I think a five year old child should not be asked to make such a decision. It seems to me it is decision the parents have to make in this case. And it seems to me (but I do not know these people nor the circumstances) the parents are perhaps trying to avoid “blame” or “sin” by having their poor child make the choice. Apart from all that it seems a nightmare to me to have to make such a decision about ones child and I sympathize with both the child and the parents
It is selfish of the parents. They can not deal with the pain of loss so they assume she cannot either.
Telling a child the truth is the only moral thing to do. The universe is what we know it to be. Had they lived in 1015 AD, I could understand the choice, but not now and not ever again.
You cannot walk into any hospital in America without at least one person on staff or a customer knowing heaven is nonsense. The delusion days are over.
There may be one person on staff who knows the nonsense but in many of the big hospitals you also see large church like rooms and pastors and other holly folks on staff. A great deal of these hospitals are run by the Catholics.
And I bet most Catholics have either read or heard of the forest of recent books (and movie!) extolling the details of heaven. The specificity of such experiences is actually a crutch to any believer.
Its ok when god is the impossible-to-explain-ground-of-being, but when someone actually quantifies a minute attribute of the afterlife it inevitably leads to disagreement.
Like Charlie Brown said long ago religion and politics are not dinner-kosher-conversations. Today, religion is fair game, but it is the unspoken word of the faithful to not disclose details of life after death, Version 7958403.93820.9996.
From a very short list of heartbreaking options, the parents chose the most merciful. If she’s going to die anyway, at least they can make her death less frightening for her. And it’s not like she’ll ever know her parents were wrong. (I can’t say lying, since that seems to be what they really believe.) It also gives the child the illusion of control. At such a young age, she might not understand, but it’s important.
“It also gives the child the illusion of control.”
The outcome is the same – unless a miraculous remedy becomes available very soon, she’s going to die regardless. And to give her the option of weighing known misery against the unknown of death is kind, I think. How much has that poor child had the opportunity to decide in her short life, how many time has she been able to make ANY call for herself? Let her make this one, and make it as easy for her as possible.
That said, my uncle died of testicular cancer before I was born, ca. 1959; I’m told that a life-saving treatment came online a mere 2 months later. Now, there wasn’t anything he could do at that point, but it illustrates that sometimes, people CAN give up too early – there sometimes is a reason to hang on and wait.
This is not about religion. This is about providing comfort in a comfortless world to a 5-year-old suffering from a brutal terminal disease. Her parents are believers so they are not lying to their beloved child about release from pain and misery on the other side. I cannot, cannot try to imagine the grief her parents are enduring. My daughter is the absolute center of my particular universe, and were I, as an atheist, to be faced with such a terrible situation and if it was clear to me that lying to my dying child (I can’t even type these words without tearing up) would ease her suffering, I would do it in a fucking heartbeat, and fill it with unicorns, rainbow skies, talking dolphins, pizza trees and any other imaginable and unimaginable creature I could conjure.
And we cannot read them likewise. Thank you.
They’re not just deluding this child but also her brother. And by spreading the nonsense around the internet they’re deluding possibly thousands of people. Maintaining the fiction of heaven will encourage more people to breed even if their children have miserable lives.
The tiniest of drop of difference in that ocean is massively outweighed by the good it is doing in this particular case.
I am glad that you consider this to be a case where following a delusion is, on balance, better than pursuing the truth. What is best is to maximize well being, or to at least minimize unnecessary suffering of both the physical and mental sort.
I agree that of course the child’s welfare (including mental health) is paramount. But I for one would find it awkward to participate in such a deception if I had to do so by way of knowing the parents etc. I would not feel the need to tell the child otherwise, but the “staying silent” can hurt those forced to do so too.
A tragic situation with no easy answers.
I think it is important to realize also that the set-up matters. If *my* parents had suddenly changed their mind and went all-Christian because I was sick, I think I would have wondered …
Though I’m no believer in gods or heavens, I think the tale being told is likely soothing to a five year old and, taking a Utilitarian stance, I think her parents are doing the right thing. I base this on my own personal experience: at six years old I watched my forty-year-old father die an agonizing death from retroperitoneal (sp?) cancer. My parents, both practicing Catholics who believed in heaven, told very much the same story about where my father was going, and that I would meet up again with him later. Looking back on that year, without a doubt these stories helped at the time, and even though I now know them to be fairy tales I still think my parents were right in spinning them. I think I’d go so far as to say they would even have been right to spin them if they had known them to be untrue. It seems to me that it is likely easier for an adult to overcome the emotional scars of a parent telling a benevolent lie than for a young child to cope with the demise of a loved parent.
Now, plastering it all over the internet is a different thing. I’m not so sure that’s right.
I’d go even further and say that outsiders should be prohibited from interfering in such private family matters — save instances where the parents are jeopardizing a child’s life or physical wellbeing.
I have no better answer than others as to how such a heartrending circumstance involving a five year old should be handled (though I couldn’t myself make up a bogus heaven story in that situation).
Your 13 year old cousin, on the other hand, should have been given an age-appropriate version of the truth of his situation. But, IIRC, in those days sometimes even adult terminal patients were not given completely accurate accounts of their prognosis (as unconscionable as that seems today).
This bummer circumstance puts me in mind of a couplet my mother would recite when she was feeling fatalistic:
Doctor, doctor must I die?
Yes, my child, and so must I.
Your mom sounds like the life of the party!
Mom was usually a laugh riot; she was prone to her occasional black Irish moods, though. Wore her heart on her sleeve, she did.
“But, IIRC, in those days sometimes even adult terminal patients were not given completely accurate accounts of their prognosis (as unconscionable as that seems today).”
When Lance Armstrong’s testicular cancer was diagnosed, it was in a very advanced stage – he had no hope of recovering. But the doctor told him he had a 10% chance of recovering, simply because he could not bear to tell him the truth, that his situation was hopeless. But Armstrong went on to recover from the cancer, and he’s still alive.
It’s still happening, in other words.
I see no harm in giving this girl that comforting fairy tale any more than any of the countless other fairy tales she has probably been told in her tragically short life. I don’t know that it helps that much, but I can’t see how it can be harmful in this case.
The situation here makes it easy: There is no hope for this girl to recover, and only misery in her future. Yes, by all means, go to heaven. Whatever. There’s no acceptable alternative.
Where it gets far more dicey is when the child has, say, pneumonia or diabetes and COULD be saved by going to the hospital, but the deluded Christian parents instead paint a false picture of choices, between the super-wonderful “heaven” and a super-horrible “hospital”, frightening the child into choosing premature death when there was, indeed, a valid option of life that the parents were deceitfully obscuring.
“We don’t have to be afraid of dying because we believe we go to heaven.”
But here’s the thing – on another blog, someone who had worked in hospice weighed in, and said that in HIS experience, it was the least religious who were the least afraid of dying. The irreligious and atheist were far more able to accept their fate/death; the more religious and devout were clearly the more fearful and the least able to accept that they were there to die.
But, then, it’s typical of Christianity to say one thing when reality’s the other.
This situation is complicated. The belief of the parents is critical to what we think they should tell the child. What I think is more challenging is to ask what I would do as a atheist in the same situation. Would I fabricate a happy ending, like heaven, to ease the child’s worry?
Sure! In a heartbeat! But the scenario wouldn’t have any “god” or “jesus” in it; it would instead have wonderful things that this particular child loved.
I think this brings us to the topic of euthanasia. While a great many people are on-board with euthanasia for the elderly, as the age drops, more and more of them drop their support. Should a child have the right to choose to end her/his life, particularly in this situation? Isn’t that sort of what they’re pitching to the child? That she can decide to end her life “early”?
And the ethics of that are horrifying. Telling a child that death will bring all the wonderful things she can possibly imagine – that’s a weapon in the hands of unethical parents. This child is at the age where children still believe whatever authority figures tell them; they don’t develop the ability to think critically until, what, 7 or 8?
So what are we to make of parents effectively trying to convince a child to kill herself/himself? Does it become okay if the child’s condition is irreversible and hopeless? The religious, especially Christians, are the ones who tell us about what boundless, infinite hope they have, and then we see this…
I personally believe that children with terrible illnesses should have the right to choose death if they wish – let me make that clear.
Um, yeah, I think maybe it does.
‘the age where children still believe whatever authority figures tell them… they don’t develop the ability to think critically until…’ I think Malgorzata Koraszews’s remarks above should disabuse you of that myth. My doubts about religion were aroused at the age of four or five when at Sunday school (which I loathed – I used to hide under the bed or at the bottom of the garden to avoid it, usually unsuccessfully, alas), a syrupy Sunday school teacher told us about the marriage at Cana, and about how Jesus had said to his mother, ‘Woman, what have I to do with thee.’ She followed this revelation with the warning that it was all right for Jesus to say that to his Mummy, ‘you little boys must never say that sort of thing to your mummies.’ I immediately thought,’Why on earth not? Jesus is supposed to be the best man in the world, and if he said that to his mother, why shouldn’t I?’ I didn’t in the end try the experiment, though.
‘the warning that THOUGH it was all right for Jesus…’
Late but – why the assumption that a child ‘believes’ in Santa Claus & the Easter Bunny or God or Jesus Christ either in an absolute and ‘childish’ way (which in the case of the former two, she or he will grow out of) or in the same way that an adult might believe in God and Jesus Christ? For a child, such things are part of the furniture of the world, the things which she or he grows up with, and are not really distinguished in quality from the fictional characters that she or he hears about, the toys to which some sort of of life and character is imputed, or, usually in the case of the only child, an imaginary friend.
There is a fluidity to the world in childhood, a sort of dreaming, and not the fixed beliefs of the adult. I don’t think that either my sisters or myself ever really ‘believed’ either in Father Christmas or in the Easter Hare (I am English) – these beings existed for us in a sort of imagined neither really real nor really not real sort of way. As for that matter did God and Jesus and the great-aunt (I will call her that – it was more complicated) who died: there and not there.
I wish that Malgorzata Koraszews would write a little more about children’s minds, because her comments, which derive from experience and not from any misapprehension or sentimental view of childhood, strike me as by far the most perceptive, sensible and humane on the thread
This reminds me of the Akira Kurosawa movie, Ikiru (which I know you’ve seen because you posted about it a while back).
In that movie the doctors lie to the protagonist, Kanji Watanabe, about his terminal cancer. Although he finds out about it anyway and makes the best of his remaining life, that aspect of the plot raises the question of whether the doctors had the right to lie to him.
Maybe it boils down to whether the victim might be able to do something useful with the knowledge, or it will only make a bad situation worse.
The parents weren’t lying as they believed in what they told their child.
They were good parents in talking openly with their child about realities and the child’s preferences. Whatever the child may or may not have thought about dying and the hereafter, she was in pain with a future of the same. From experience, I know how excruciating it is for parents to feel they must force their child to take painful treatments. At one point, it took five adults (mostly males)to hold down my (then) 4 – 5 year old son for a painful treatment.
It was fine to post the issue to a blog because it generated a great deal of useful thought and discussion on an important issue.
I’m with the parents on this. When the only choices are serious suffering vs. death, death may not be the worst choice, and if thoughts of heaven help the girl, that’s great. Although I think heaven is a fairy tale, I might offer its comfort in a situation like this.
What a sad story, I can’t even begin to imagine what this family goes through.
It’s too late anyway now to stop telling the story of going to heaven. In fact, it would be down right cruel.
Children with severe illnesses tend to mature very early and they get more than parents and other caregivers suspect, even 4 year olds.
Even if the little girl doen’t understand what death really means, she knows what hospital means for her and doesn’t want that. It would be very different if she had a treatable illness, though.
I’m not convinced that the fiction of going to Heaven is actually very comforting for a five-year-old. Suppose the parents told her she’s being shipped off to Philadelphia, never to return. Her parents won’t be going with her, nor anyone else she knows, but don’t worry, it’s a nice place, with lots of nice people there, and smart doctors who can fix her up in a jiffy and make her healthy and whole. But coming back to her home and family is not an option.
Even if you believe Heaven is as real as Philadelphia, this seems a rather daunting prospect for a young child.
On the other hand, even five-year-olds know what it’s like to go to sleep, and do so routinely without fear. So why not say death is like that? It has the virtue of actually being true in the sense that both involve loss of consciousness, an experience the child is intimately familiar with. If the child asks “Will I dream?”, I’d be comfortable saying Yes. Dead brains don’t dream, but dying brains indulge in all manner of fantasy, as Eben Alexander and his ilk remind us.
Well, all I can say as to whether such a fiction might be comforting or not is that my mother, whose father died when she was very young, had two sisters, one younger and one older, who both died very young. She said to me once that she had been brought up amidst death. Hers was not a particularly religious family (my mother almost never went to church, though my father was a sort of Anglican – the sort that is difficult to distinguish from an agnostic, and had small time for what he called ‘the pi squad’). But when her elder sister, Pamela, was dying, and knew she was dying, she told either my grandmother or my great-grandmother, who looked after the children since my grandfather being dead my grandmother had to work, not to worry, since she was going to meet Daddy. I’m not sure how old she was when she died, probably around ten. And in her case I suppose the question to be asked is, who was comforting who?
I was very struck by Malgorzata Koraszews’s very humane and perceptive comments above – children know a great deal more than parents often give them credit for. tsbardella’s foul-mouthed, self-righteously intransigent little diatribe is, I am afraid, morally disgusting.
Why did he call Anglicans “the pi squad”? Was this a pun on two senses of the word “irrational”?
Short for ‘the pious squad’ – the sort of people who are always badgering you about your spiritual standing, boring you with their ‘good news’, and trying to convert you.
I’d argue that “going to meet Daddy” is a different case from “you will go to heaven by yourself, and Mommy will join you later.”
Even if Mommy believes that’s true, she knows that “later” probably means around 50 years later. So it’s dishonest (in my opinion) for Mommy to pretend that this is just a temporary separation. By their beliefs, the child is being sent ahead into unknown territory with nobody to hold her hand. To my mind that’s not a comforting prospect.
As I recall from what I was told, it was my mother’s sister who came up with the idea that she was going to meet Daddy. The child is anyway going into unknown territory with nobody to hold her hand, as in the end we all do. Death is not, unless or until we are in intolerable circumstances, a comforting prospect.
The child has been raised by parents who, in all likelihood, believe what they are saying. On the odds, the child, if she were to live, would believe it too when she got older. She might, indeed, believe it all her life. If she were 14 or 23 or 35, what would be the objection (other than “you’re wrong, dammit”) to believing parents telling a believing child what they both believe?
I’m not in favour of the lying to children and especially about death. We have been lying about it for centuries, when is it going to be time to stop? There must be between all atheist who care about the human condition to show in words and in what we say to express the idea of death without lying.
We all have the same fate, every single atom of your being will rejoin the universe and perhaps dispersed to it’s far reaches.
What do you have with death when you are suffering? when you are being eaten alive by disease, peace. The same peace we will all have. Sure, even adults fear death, freek, religion thrives on it but to die with dignity as I and surly you know you can, because knowing what life actually is, deeply and with your being is a wonder in itself.
In such circumstances, there is no other course but to envelop the child in love. It seems that these parents are doing just that, and it matters not to me what stories they tell.
” . . . controversial among medical ethicists . . . others have been vehement in their criticism . . . ‘This doesn’t sit well with me. It makes me nervous,’ Dr. Art Caplan, head of the Division of Medical Ethics at New York University’s Langone Medical Center, told CNN . . . I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.'”
Everybody rides the bucking horse better than the guy riding it. Perhaps the good doctor would relish the opportunity to put his professional skills to work and show us how to properly handle the situation. If he’s “nervous” now, let him give himself something to be really nervous about by having to deal with face-to-face questions (“Am I going to get well?” “What happens after I die?”) from the child about death.
It may be that most 4-year-olds don’t understand the concept of death. But I for sure “got it” upon being lifted up to look into my father’s casket. Whatever I may or may not have thought, I knew that I was not going to see him again. I got a good dose of the contingency, uncertainty, fragility of life.
In Japan, where I have lived for over forty years, wakes and funerals are very much family affairs, as is the cremation afterwards. Small children are regularly brought to all three – though the last is only for family and very close friends. At the funeral, flowers are arranged around the body by those present, including the children, before the coffin is closed.
At the crematorium, the body is not reduced entirely to ashes, so that recognisable chunks of calcined bone are left among the ashes, and these are picked in chopsticks by members of the family (and close friends)and placed in an urn; often you pick up larger pieces of bone in pairs. The chopsticks are passed around so that everyone, including in most cases any children who may be present, can place some bits of bone in the urn.
It is the sort of thing that sounds horrifying to someone not brought up in the culture, but I have always found it far preferable to what happens at an English crematorium, where the coffin disappears behind some tasteful curtains to strains of ineffable music, and that is pretty well it.
The Japanese way introduces death as a natural event in life to people of all ages and is both salutary and strangely comforting: that is what you are going to become.
“Everybody rides the bucking horse better than the guy riding it”
I haven’t heard that one but is another good description of a peculiar state of mind people can have.
Well said.
When my son died, my daughter, (then 16) said to me, “It’s times like this that I’d like to believe in a heaven”.
I’ve never told my kids what to believe, in fact whenever they would say something about a topic, I would play Devil’s Advocate and throw questions at them, to encourage them to find out more. So when she said that, I answered, “Look, if it will help you deal with things and make feel better, you believe what you like”
She just frowned at me and said, “You don’t ‘believe’ things because they make you feel good Dad, you believe them because there’s evidence to”… I’ve never been more proud of her, to still have that level of reason in such a horrible situation takes a lot of strength. (I also felt quite chuffed with myself, that I’d raised her to think in that way)
However, in this instance, I’d have to agree that the ‘lie’ is justified and I really feel for the family involved
Minor point, but I thought ‘“Heaven vs. hospital”: dying 5-year-old given a Hobson’s Choice by Christian parents’ was a misleading headline in several ways, though I’m sure Prof CC didn’t mean it to be. It implies that ‘hospital’ might save her life (agreed the article itself immediately dispels this), but also ‘given Hobson’s choice by parents’ implies that the situation was somehow imposed by the parents whereas of course it wasn’t. And ‘Hobson’s choice’ is no choice at all, whereas in fact the girl did have a genuine choice – though both alternatives are dire.
Leaving aside the ‘heaven’ factor, atheist parents might offer their daughter the same choice.
cr
Her Death is sadly inevitable but I dont see any harm in making it less scary for her by feeding her the fantasy of “Heaven” after all she’s only 4, and what does it matter if she’s lied to, she wouldn’t be aware in any case.
So sad that they feel the need to lie to her. But at that age, the child probably doesn’t really have an understanding of what death actually means.
If the medics are certain in their diagnosis, and there really is no hope, then euthanasia (whether by barbiturate overdose or any other method) would seem to be the best option. Lieing to the child may make the parents feel better (they may even believe their lies), but it’s not going to have any material effects on the victim.
In this case I think the story is a good.