The right to live well leads to the right to die well.
November 13, 2008 1:16 PM   Subscribe

Hannah Jones is a terminally ill 13 year old who has won a court battle in Britain allowing her to die peacefully instead of undergoing the major surgery that could prolong her life.
posted by grapefruitmoon (111 comments total) 4 users marked this as a favorite

 
It's sad she has to make that call to begin with, but considering the circumstances, good for her.
posted by chimaera at 1:29 PM on November 13, 2008


Also, it was a heart transplant, and the success rate of heart transplants in the UK recently has declined to a poor level. I doubt whether it was clear that this was the best option even on purely clinical grounds.
posted by Phanx at 1:37 PM on November 13, 2008


These cases make me nervous. While I'm very sympathetic to the desires of people who seem to be in for indefinite suffering to end it all peacefully, the slope in this area is particularly slippery and the possible outcome particularly nasty. It's just too easy for relatives, guardians, anyone who might benefit from someone's death to pressure them into asking for it "for their own good." From the Guardian story:

The girl's father, Andrew, an auditor, said: "It is outrageous that the people from the hospital could presume we didn't have our daughter's best interests at heart."


No, sadly, it's not outrageous at all; plenty of parents don't have their children's best interests at heart. Doctors are sworn to preserve life, and most of them don't like the idea of diluting that oath. I don't either. (Certainly there's a better case to be made for not forcing someone to have lifesaving surgery than for letting them have a fatal dose of morphine, and I'm not saying I necessarily disagree with this particular decision, just registering my feelings about the general issue of "right to die.")
posted by languagehat at 1:45 PM on November 13, 2008 [6 favorites]


“I know there’s a big waiting list for heart transplants and I’m happy to save someone else’s life,” she said.

It is hard to imagine that there is anything wrong with this amazing young person's heart. Tragic that her life will be so short.
posted by isogloss at 1:48 PM on November 13, 2008 [7 favorites]


languagehat has a point. People can be pretty scummy and if I were a doctor I would want to be sure about that sort of thing.
posted by dunkadunc at 1:51 PM on November 13, 2008


I think she's too young to decide. Her parents should not let her do this.
posted by RussHy at 1:55 PM on November 13, 2008 [2 favorites]


When I was 14 I lost my mother after a long fight with cancer. I remember during her last few months she would always be so cold and dress in full out winter clothes, stocking hat, coat, gloves while inside. At the same time my Dad was really into Rush Limbaugh's short lived TV show and after the show ended each night he would pontificate for a few minutes about how whatever crazy bullshit left Rush's mouth that night was pure unadulterated truth.

It so happened that one night that Rush's topic of the day was assisted suicide and as my dad started in on his typical routine about the "sanctity of life" I remember my mom looking over at him, removing the scarf from her mouth and saying simply, "Fuck you".

I love that memory because in 2 simple words she summarized the hypocrisy of the healthy to mandate the terms of end of life to the suffering. Also dad wasn't so preachy after that.
posted by jlowen at 1:56 PM on November 13, 2008 [113 favorites]


Maybe they should have found a happy transplantee to talk to her, to demonstrate that there can be a good outcome.
posted by orthogonality at 1:56 PM on November 13, 2008


Not much is said about the law in Britain regarding this issue. Instead the issue is pitched in human interest terms. Any sentient being must sympathize with the plight of young Ms. Jones. When the story is looked at only from her point of view, the solution is obvious. When the story is looked at a broader moral perspective or from medical ethics or legal philosophy, it gets far more complicated to identify the core issue we seek to protect as a society.

There is a reason why we often do not let suffering people make medical decisions for themselves. There are also reasons we typically do not let minors make medical decisions for themselves. Here we have both. I can tell you that here in the United States the rule is that health care providers can go to Court and get orders over-riding the wishes of minors or their parents so long as the patient is a minor, the state being in loco parentis until such time as a minor reaches the age of majority to make decisions in the minor's best interest.

But how do we analyze this situation? What governing principle would dictate how we should resolve this? The principle of non-malfeasance and opposed to beneficence in medical ethics? A cost-benefit analysis of the treatment in question? [Would this procedure cure Ms. Jones such that she would be without problems? No. But then again, insulin for diabetes is not a cure either. While her days may be numbered, is that a reason to hasten her demise?] Or do we look at it only from a patient's perspective--informed consent and right to refuse treatment, etc.? If that is the option to take, where do we draw any lines?

I can say that I have been involved in cases advocating for treatment where beneficial treatment is refused for minors, cases wherein the plug is pulled against the wishes of the family, cases in which family wants to pull the plug but the physicians refuse, and cases in which patients are declared incompetent and then subjected to treatment. And I've been on both sides of theses issues in court. They are difficult, sticky, and hard calls to make.

Whenver these issues come up, I often think about the cases of Karen Ann Quinlan and Nancy Cruzan and their legal fights. And I think of the argument of the family in Cruzan. The counsel for the plaintiffs argued how much the family loved Nancy Cruzan. One of the Supreme Court justices interjected and inquired what the plaintiff's position would be if the family did not in fact love the patient. The point is that from the perspective of defining a governing principle that is the law, a life or continuation of life should not depend on the degree to which it seen as attractive or desirable by those making a decision.

Legal philosophy, moral philosophy, medical ethics and human sentiments would all offer conflicting answers to this question and would all suggest different operating principles. At various times I have embraced each of the perspectives only to change again. I think I can live a hundred lives and never settle on an answer. The only hope I take from the situation is that these instances are thankfully rare. Would that we did not have to make these decisions ever.
posted by dios at 1:56 PM on November 13, 2008 [27 favorites]


dios!!! Welcome back! It'll be good to have your knowledge and point of view around again.
posted by Faint of Butt at 2:00 PM on November 13, 2008 [4 favorites]


While I'm not immune to the charms of the slippery slope, I've never quite gotten the "well, they could be pressured into it!" objection.

Take any other right, and add, "Well, they could be pressured into it!" Gay marriage? (Heck, any marriage). Sky-diving. Driving a car. I know the Big D ups the stakes quite a bit, but really ... most other rights people fight for are things where relatives, friends, and such can exert undue pressure anyway, and in this case, we're already discussing Almost The Worst That Can Happen, with the Actual Worst reserved for "being kept alive when you do not wish to be, and, oh yeah, sucking up resources while you do it, so you spend the last agonizing months of your life aware of the fact that you're wasting a perfectly good heart."

As to the doctors, well, I'm glad that they like their oaths, but they're not even the party of secondary importance in this particular struggle, much less the first. It's the patient first, then perhaps caretakers if the patient is not of sound mind, etc., and then somewhere after that comes the doctors and their oaths.

I just hope that, when my time draws near, I can approach the situation as rationally as she has and receive the dignity I deserve for doing so.
posted by adipocere at 2:02 PM on November 13, 2008 [4 favorites]


I can see why the hospital would want to force a person to go through what they would consider to be a "do this and you live for another 20 years" but to force a person to go through a heart transplant? The pain of recovering from heart surgeons cracking your sternum open like a walnut isn't something I'd wish on my worst enemy.
posted by Talez at 2:13 PM on November 13, 2008


I've never quite gotten the "well, they could be pressured into it!" objection.

I'm thinking you haven't read much about the history of this issue. You might want to do that rather than rely on your uninformed thought processes.

dios!!! Welcome back! It'll be good to have your knowledge and point of view around again.


Seconded.
posted by languagehat at 2:14 PM on November 13, 2008


She hasn't chosen to die peacefully. She's chosen the easier, but shorter path. She's taking the safer bet, really; she's guaranteed some time with her friends and family, instead of taking the chance that she'll spend the rest of her life in the hospital.
She's not taking a cyanide pill. Is she too young to make the decision? Of course. Unfortunately, she still has to.
And I have to say, I have a feeling this has happened before with less photogenic children.
posted by Citizen Premier at 2:14 PM on November 13, 2008 [7 favorites]


Post needs a hero tag.

Sad, but glad she's getting to make the call. It's a matter of dignity.
posted by cjorgensen at 2:19 PM on November 13, 2008 [1 favorite]


She's spent 9 out of the 13 years of her life going in and out of the hospital. Having a heart transplant is not going to save her life, and she's over it. She's decided she's done and wants to live the rest of her life outside a hospital. Good for her; good for her parents; hope she gets to enjoy whatever time she's still got ahead of her.
posted by OolooKitty at 2:23 PM on November 13, 2008 [2 favorites]


dios came back! (Is there anything that Obama Hope can't do?)
posted by orthogonality at 2:24 PM on November 13, 2008 [3 favorites]


Sad stuff. Reminds me of Daniel James. Is this more common or just more of a fascination with the press now?
posted by Busithoth at 2:30 PM on November 13, 2008


I like this article because it clearly mentions in the first line its not like its just this one surgery. She's had over a dozen in her 13 year. Thats alot by any standard and I for one support her if her decision is to decide not prolong her suffering.
posted by Sargas at 2:30 PM on November 13, 2008


The children's charity, Caudwell Children, offered them the chance to travel together to Walt Disney World in Orlando with 40 other very ill children. But Caudwell has been unable to find an insurer. Cover must be found by 1 December.

I represent Caudwell Children, the Charity that will hopefully be taking Hannah and her family to Florida in just two weeks. Should anyone wish to support the Charity to enable other children, like Hannah, to go on similar trips can donate [here]

I have no idea whether this will directly benefit Hannah or not, but here is the donations page for Caudwell Children.
posted by kid ichorous at 2:36 PM on November 13, 2008


Doctors are guided by the ancient Hippocratic oath, which binds them to using all treatments in their power to heal the sick. If they are convinced a treatment will prolong life, or enhance the quality of life, they are bound to recommend it and do what they can to convince the patient to take it.

This seems to be a situation in which "prolong life" is in direct conflict with "enhance the quality of life"
posted by debbie_ann at 2:37 PM on November 13, 2008 [2 favorites]


While I'm not immune to the charms of the slippery slope, I've never quite gotten the "well, they could be pressured into it!" objection.

This is purely anecdotal, but take it for what is. A couple of years ago, I got a phone call on a Saturday from a NICU at a major hospital. Two twins had been born in the early hours of Saturday who suffered from a condition called twin-to-twin transfusion. This condition and various other needs put the twins in a position that they need blood transfusions. Alas, the parents of the children were Jehovah's witnesses and refused blood products. So, less than an hour later I was standing in the living room of a judge with a temporary restraining order in my hand authorizing the provision of blood products until a full injunction hearing could be had on Monday afternoon.

On that Monday at the hearing, the parents showed up to argue their point pro se. But there in the back row of the courtroom sat three men from their church. These men were there to make sure the family fought for their beliefs but did not crack. After the hearing was over and we won, the mother told me "Thank you" through her tears. She wanted her babies to live but was stuck and being pressured to jeopardize them. Sadly, one of the infants ultimately died despite the intervention.

There are few--but sadly some--times when people make medical decisions based on other pressures beyond what is the *best* decision. Too many other factors enter the equation.

To those of you who are certain this is merely an act of dignity: there is probably much more to the story here than we are getting from these three pieces. There are a reasons why the doctors want to give this girl a new heart: its because in their medical opinion it is in her best interest. So consider that this is not futile, painful, and inappropriate treatment she is turning down.
posted by dios at 2:39 PM on November 13, 2008 [19 favorites]


Oh, and thanks my friends.
posted by dios at 2:40 PM on November 13, 2008


I know that I read somewhere that the treatment required after a heart transplant could conceivably cause her leukemia to come back....

I think she made the right decision. I have no problem with authorities speaking with her to make sure she understood what she was doing, but other than that, I cannot imagine how horrible it would be to be forced into surgery that wouldn't necessarily help but would have a good chance of decreasing quality of life.


There is a difference between assisted suicide or euthanasia and simply letting nature take its course when other options are not all that great. Good for her, and may she confound the doctors with a longer and better life than they are expecting for her.
posted by St. Alia of the Bunnies at 2:49 PM on November 13, 2008 [1 favorite]


Ah, no, languagehat. "I've never ... gotten" was used to express that I have in fact heard that particular objection before, but simply have never been swayed by it. It wasn't as if I was hiding in a cave for the Schiavo mess, or Kevorkian before that. And while I am familiar with some small amount of the history of the issue (perhaps you'd care to share your extensive bibliography you've compiled), the history is irrelevant (aside from the legal history) when it comes to agreeing or not with particular non-legal objections. Agreement or lack thereof does not require a timeline from, say, Hippocrates onwards to say, "Yeah, I buy that."

The logic (or emotions), stand as they are against the current state of arguments for and against. It's one of the reasons humans never seem to settle much of anything, just as I doubt this particular issue will be resolved (aside from perhaps legally) a century from now. It will have exciting new twists brought about by technology, but the arguments for and against will remain oddly familiar.

I'm aware that people will bring pressure to bear. It's just that people can and will bring pressure to bear about every decision someone else makes, large or small, for reasons that are good or bad, convenient or compassionate, political or personal. If that objection is so valuable here, why do we not hear it elsewhere, for situations which are also Quite Serious? I hear it a teensy bit about abortion, and that's it.

P.S. Dios, I was just thinking about you last night!
posted by adipocere at 2:53 PM on November 13, 2008 [1 favorite]


Maybe they should have found a happy transplantee to talk to her, to demonstrate that there can be a good outcome.

You mean like this one?

I think she's too young to decide. Her parents should not let her do this.

She's 13 years old, and has been sick since she was 5 years old - I think she has the right to decide.
posted by The Light Fantastic at 2:53 PM on November 13, 2008 [3 favorites]


Man it freaks me out to see a post starting with my full name. At least this will make me even harder to google....
I'm glad my fellow Hannah Jones will be given an opportunity to enjoy what's left of her tragically short life. I can still remember being 13, and that is by no means too young to be able to comprehend the situation.
posted by internet!Hannah at 2:59 PM on November 13, 2008 [1 favorite]


"First, do no harm" isn't as simple as doing everything in one's power to prolong life, and it's been woefully misunderstood to be just that for too long. Often the question is "what do I do to cause the least harm?"

When the patient will be harmed regardless of the course undertaken, the calculus becomes much more involved. If the person were to statistically be most likely to live a short but relatively pain-free life versus one of prolonged agony, you don't need to tell me which outcome is more harmful.
posted by chimaera at 3:24 PM on November 13, 2008 [3 favorites]


So I recall from other threads that doctors have also recommended bad and/or unethical treatments to patients - the disabled girl who had hormone treatments to keep her a perpetual child comes to mind. So it's not as if doctors are omnipotent. Not that this girl's doctors are giving her bad advice, but doctors are no more or less biased than anyone else.

there is probably much more to the story here than we are getting from these three pieces

Yay! Dios! While I expect you're right I don't know if it makes much material difference. A 13 year-old girl has been living in hospitals her entire life and no longer wants to do so. It doesn't seem that complex to me. Some illnesses are simply inescapable - either she dies of a bad heart or she dies of leukemia. I'm pretty sure that even if she accepted every single treatment she'd still die an untimely death.
posted by GuyZero at 3:33 PM on November 13, 2008


So consider that this is not futile, painful, and inappropriate treatment she is turning down.

Not futile I'll consider. Not inappropriate as well. But suggesting that having a heart transplant isn't painful is laughable.

This comes to a matter of personal autonomy and the ultimate question: does this girl have enough information and enough rational ability to make an autonomous decision? As it stands, anyone who has lived with chronic illness or with a child with chronic illness knows that it ages you, literally and metaphorically. It gives you perspectives that the healthy (including the majority of physicians) can never have.

After eight years of ill health, doctors, hospitals, procedures and surgeries, this girl certainly knows whether or not she feels capable of going through more, especially given that post-operatively she'll be on a course of rehabilitation and will need serious drugs for whatever years she might gain. Does a 13 year old understand that death is final, that she will not come back (at least not as Hannah Jones of Marden)? Absolutely. Does a 13 year old understand that death will finally grant her respite from a body that's betrayed her since she was a preschooler? Most certainly.

Is it sad? Terribly so. 13 year olds shouldn't have to be thinking about these things. But should she have to soldier on against her wishes? That raises the question of who Hannah's life and body belong to, if they are not hers, that she can say after all that she's dealt with, that she has had enough.
posted by Dreama at 4:10 PM on November 13, 2008 [3 favorites]


I don't know enough about the medical facts of this situation to have an opinion on what is the right course of treatment. I am not a doctor anyway so even knowing more would probably be lost on me. What I do know is odds. I think that we cannot generalise about what a 13 year old can or cannot do regarding maturity to make a decision. Each 13 year old and each child must be evaluated on his or her own maturity levels. It sounds as if this young girl was simply playing the odds with her best outcome, that of living some portion of her life out of hospitals and doing what she wants, being the decision factor. Based on that, I think she adequately evaluated the odds of her goal happening under any circumstance and chose the one she thought would maximize her preferred outcome. Is 4 months at home or at Disney Land better than 7 years in hospitals? Who am I to say?
posted by JohnnyGunn at 4:15 PM on November 13, 2008


While I'm very sympathetic to the desires of people who seem to be in for indefinite suffering to end it all peacefully, the slope in this area is particularly slippery and the possible outcome particularly nasty. It's just too easy for relatives, guardians, anyone who might benefit from someone's death to pressure them into asking for it "for their own good."

It seems to me that, while you're very sympathetic to the desires of people who seem to be in for indefinite suffering to end it all peacefully, you're more than willing to have relatives, guardians, lawmakers, and doctors pressure them -- if not physically force them -- to live "for their own good". Why is this moral, but the opposite decision is not?

Personally, I don't find your argument convincing. Undue pressure exists on both sides of this issue, as does a slippery slope and a potentially nasty outcome. The fact that the bottom of one slippery slope seems to be the current status quo does not make it any more moral, nor less nasty, involuntary, and cruel for those who have to live with it.

I have the right to put myself in the path of death in any number of ways: to participate in dangerous contact sports, to jump out of an airplane, to climb mountains, to dive to the ocean floor, and to serve my country in war... and, of course, those who love me have the right to pressure me about any and all of these decisions, the final choice being mine. But if I develop a severe illness, suddenly these rights go away, and the state can force me to die a straw-death? Sorry, but I do not see "preservation of life" in that... quite the opposite, actually.
posted by vorfeed at 4:32 PM on November 13, 2008 [7 favorites]


Post needs a hero tag.

oh god, no.
posted by Citizen Premier at 4:32 PM on November 13, 2008 [2 favorites]


As an atheist, I have no ideas about protecting the "sanctity of life," but I'm leery of this precedent. Has no one linked to Not Dead Yet? It's a group of anti-assisted suicide disability advocates that press the point that their own lives are worth living. The first post up now attacks the idea of calling those who choose assisted suicide "brave" -- which, I notice, Hannah is called -- because it posits that not choosing to die is cowardly.

I am entirely undecided about assisted-suicide laws* because of the moral hazard involved. It's been well pointed out that the popular image of an assisted suicide is that of a loved, stable person at the end of a long medical road. But laws apply to everyone -- people with no insurance, people with no families, people with rotten families.

On that Monday at the hearing, the parents showed up to argue their point pro se. But there in the back row of the courtroom sat three men from their church. These men were there to make sure the family fought for their beliefs but did not crack.

Words cannot express the contempt I have for people who would do that to parents. How could hell be worse, when heaven has such people in it?

----
* And yes, I have watched someone die slowly of cancer -- my grandmother, in fact -- so please don't yell an anecdote at me.
posted by Countess Elena at 4:38 PM on November 13, 2008 [1 favorite]


She chose to have a short, but higher quality life or what potentially could be a longer, but lower quality life, and that's only if the heart transplant was a success.

I realize she's only 13, but I'm guessing if she's been living in a hospital for the majority of her life and has faced her mortality on a daily basis, she's a pretty mature 13 year old. She also knows what she is talking about. I have no idea what it's like to have a chronic, painful, life threatening illness, but she does. She's gone through endless pain, endless procedures and medicines that never really cured her and never gave her like back to her, all they did was maintain the status quo. She's obviously decided that the status quo is no longer tolerable for her and she needs to have a normal life, even if that normal life is very short.

On another note if you read the articles it says that the immuno-suppressant drugs used for the heart transplant might bring back her leukemia. I'll take the doctors word for it that this was her best shot, but even with the heart transplant her chances don't sound very good. I can totally understand not wanting to go through a horribly painful and life altering surgery that only might work.
posted by whoaali at 4:40 PM on November 13, 2008


Very sad set of decisions to be made by all parties, and I'm glad everyone fought their conscience.

I found it oddly reassuring that Hannah is being given the chance to choose - no one ever knows what the the outcome of their decisions will be, but she seems to have really considered the impact of the procedure versus "extra" time and chose what she felt would give her a better life overall. What a complicated and heartbreaking decision to make.

ooh, dios is back. groovy.
posted by batmonkey at 4:40 PM on November 13, 2008


it posits that not choosing to die is cowardly

False dichotomy. Anyone who faces the question needs to be brave. I don't see any decision as cowardly. The act of making the decision is the trial, not the decision itself.
posted by GuyZero at 4:41 PM on November 13, 2008 [4 favorites]


Previously, "I hate to play the I-just-watched-my-mom-die card -- but, um, I just watched my mom die" is a bone-chilling plea from Dan Savage to vote yes on WA state initiative to enable terminal patient adults to choose death with dignity in Washington State. As a follow-up, the initiative has passed 57.8% to 42.2%. (source)
posted by blindcarboncopy at 4:53 PM on November 13, 2008 [1 favorite]


Suppose this child elects to have the surgery and it is successful, then what? She lives another 50 years (maybe more - maybe less), does or creates something meaningful, falls in love has children. In the end she looks back at the horrible difficulty of her early life but is able to say she didn't give up and the adults around her didn't let her either.

People all over the world struggle every moment either with physical illness or the potential abrupt and violent end to their lives with the hope of making it to the next day. The modern medical world is harsh but effective, and for an informed parent to go along with the wishes of a child harmed yet ultimately ignorant of the full possibilities of life is to be complicit in her death.

Get up early, watch the sun rise.
posted by pianomover at 5:08 PM on November 13, 2008


The first post up now attacks the idea of calling those who choose assisted suicide "brave" -- which, I notice, Hannah is called -- because it posits that not choosing to die is cowardly.

I agree with GuyZero - we call them brave because they are facing extraordinary challenges. We also call people who fight illness and overcome, or don't, brave.
posted by Solon and Thanks at 5:23 PM on November 13, 2008


Childhood cancer (sucks) via the Big Picture blog.
posted by acro at 5:30 PM on November 13, 2008


pianomover, it's nice that you can imagine a Hollywood ending to this girl's story. It's really easy to say "What a fool her parents are!" from your armchair with your happy predictions for her future. Want me to turn it around? Suppose she elects to have the surgery and it's not successful, then what? She lives for a short while and dies in pain. It's not easy to get up early and watch the sun rise when you're dying of leukemia in the hospital.

To suggest that this girl, who has spent every month in the hospital since she was five, is ignorant to the choices that face her... she is more aware of them than you are, I'd wager, or I am. Frankly, how about we cut it out with the hypotheticals?
posted by Solon and Thanks at 5:33 PM on November 13, 2008 [2 favorites]


I think a lot of people here are under the false impression that her quality of life would be worse with a transplant than it is right now with refractory heart failure. Despite the fact that there is obviously a lot of post-operative pain associated with thoracotomy, that pain is transient and treatable. Surely some of you have relatives that have had bypass surgery? Hard to imagine they regret it. As is, this girl probably has trouble walking across a room without developing air hunger, which I assure you is quite unpleasant and is an exertional limitation she may face at all times up until her death. This wouldn't be the case if things went well with a transplant. In simple terms, with a successful transplant, she could expect to lead a near-normal life between albeit frequent doctors visits and immunosuppressive medications. No doubt, it's risky, won't yield anywhere near normal life expectancy, and it certainly doesn't always go well; but I'd say in my experience chatting with perhaps a hundred or more adult heart transplant recipients, they are usually more than glad to have gone through it. And this improved quality of life is supported by a fair-sized body of research on the subject.
posted by drpynchon at 5:39 PM on November 13, 2008


dios!
posted by cortex at 5:40 PM on November 13, 2008


The thing that gets me is when people aren't keeping their options open.

The medical odds aren't clear from what I've read, and I don't understand exactly how this became a family decision rather than a next step in treatment so there are to many unknowns for me to have an opinion in her case.

However, among some of the fundies in my family, sometimes the approaches to medical treatment are like a Monty Python sketch. It's a red flag - a big scary red flag - for me when someone refuses treatment that their medical team believes worthwhile. And she's a minor.
posted by Lesser Shrew at 5:40 PM on November 13, 2008


(All that said, I'm still a proponent of patients' rights and autonomy, and if she and her family really do understand the potential risks and benefits, it is their decision to make.)
posted by drpynchon at 5:45 PM on November 13, 2008 [1 favorite]


I think a lot of people here are under the false impression that her quality of life would be worse with a transplant than it is right now with refractory heart failure.

I think that was implied by the statement that the transplant could/would cause a recurrence of her leukemia. But there's certainly a lot of latitude in what to think based on the slim details in the article.
posted by GuyZero at 5:45 PM on November 13, 2008


Get up early, watch the sun rise.

pianomover I'm sure that's exactly what Hannah wants to do but in her case it's a little more complicated than simply putting her trust into the modern but effective medical world. Her and her parents have put their trust in that system for the majority of her life, they've heard the opinions, second opinions, and probably even third and fourth opinions and we've read at most 3 articles. They are informed, the parents arguably more so but give the girl a little more credit and don't call her ignorant on her own situation that she's been dealing for nearly her entire life. We can suppose a lot of things, suppose she has the surgery and dies, suppose she doesn't have it and dies, suppose she has it and her quality of life hits the shitter, etc.... You think these are things she hasn't thought of, or was she too busy playing with her dolls to consider any of this. I'm sorry but to call this girl out by telling her to tough it out and get up early, watch the sun rise is a pretty shitty thing to say. Next time you're fighting leukemia and complications for 9 years I'll make sure to tell you to walk it off.
posted by BrnP84 at 5:49 PM on November 13, 2008 [1 favorite]


This post gave a lot of information about what it's like to live with a heart transplant, long term.

I think it should be said she's not simply turning down yet another operation, she's turning down the operation and everything that comes with a heart transplant. This isn't a bypass surgery, it's a transplant and that means immuno-suppressant drugs for the rest of her life and the strong possibility she would need another heart transplant down the road. This is all best case scenario for her, assuming the leukemia doesn't go back and the transplant is a success.
posted by whoaali at 5:53 PM on November 13, 2008


This isn't a bypass surgery, it's a transplant and that means immuno-suppressant drugs for the rest of her life and the strong possibility she would need another heart transplant down the road. This is all best case scenario for her, assuming the leukemia doesn't go back and the transplant is a success.

This is true, and I hope I didn't suggest otherwise. But there was a lot of talk up-thread about the surgical pain of transplantation, and in that regard bypass is a sensible comparison.
posted by drpynchon at 6:04 PM on November 13, 2008


What doesn't come through in this article is the particular risk/benefit analysis as applied to this case. Would she be a candidate for running a marathon in a few years? Or is this yet another pyrrhic battle with the probability of more to come? Who is competent to make these decisions? Is this similar to a do not resuscitate order (because it certainly isn't close to assisted suicide)? Who has the moral authority to make these decisions for someone else?

I'll agree that most people would be nuts to turn down an organ transplant, if that transplant is likely to be successful at treating the underlying cause. We are not privy to the discussions with oncologists weighing those risks.
posted by KirkJobSluder at 6:13 PM on November 13, 2008


Good to see you back dios, very good.
posted by caddis at 6:29 PM on November 13, 2008


I've been wondering what happened to Dios over the past few months. Nice to see you back, my friend.
posted by Bageena at 6:38 PM on November 13, 2008


Suppose this child elects to have the surgery and it is successful, then what? She lives another 50 years (maybe more - maybe less), does or creates something meaningful, falls in love has children.

I've caught this article in other spots, and its states this would only prolong her life 10 years. So she'd have to get another heart every 10 years likely for the rest of her life and roll the dice of dying on the operating table, all the other post-surgeries complications and immune-suppression drugs that come with it. She could easily spend a significant portion of her adulthood in a hospital. That's not something I'd wish on anyone.
posted by MiltonRandKalman at 6:54 PM on November 13, 2008


Solon and Thanks: Her decision not to have further surgery is based a hypothetical
assumption that the surgery will be unsuccessful or as the child says her self "Not worth it." I'm not saying her parents are fools either just complicit in assisting a child to make a decision that I do not ultimately feel is hers to make. Her body/life has so far been taken from her by the nature of her disease and the so far unsuccessful attempts to treat her. The decision she has made ensures her early death painful or otherwise, the choice to have the surgery still retains the possibility of a short and painful death yet also holds out another possibility which none should deny so easily.

BrnP84: I in no way imply that this child is unaware of her situation how could I? No one expects her to "walk it off either" that's what you do for cramps for Christ's sake. She is unaware of how precious life is. I'm not talking the creepy anti-abortion definition of life, but the getting up in the morning hear the birds, curse the traffic, pay the bills, wonder why the fuck am I alive sort of life. That's the life I'm for and I would hope her parents wish the same for her.
posted by pianomover at 6:58 PM on November 13, 2008


That's the life I'm for and I would hope her parents wish the same for her.


I don't doubt that the parents are all for that kind of life, but I think they are against the "holy shit my whole body hurts, I'm in the hospital, I've been suffering for 9 years, I have leukemia and I can't live a normal life without medical attendtion" kind of life enough to support their daughter's decision.
posted by BrnP84 at 7:03 PM on November 13, 2008


Pianomover, there are worse things than death.
posted by St. Alia of the Bunnies at 7:04 PM on November 13, 2008 [6 favorites]


I'm not saying her parents are fools either just complicit in assisting a child to make a decision that I do not ultimately feel is hers to make

Whose decision should it be? If you don't think this is her decision to make - her decision backed by her parents and the courts, whose is it? Should the doctors choose how she dies and what her quality of life is? Is it your choice, maybe?

We would all like this child to have a "hear the birds, pay the bills" sort of life. We're not privy to the conversation she and her parents have had with her doctors, but odds are life is never going to be flowers and sunshine and puppydogs. Just because you wish this child didn't have to deal with this situation doesn't change reality.

I don't know if I would make her choice. I think I wouldn't, but I haven't been in her situation so who can tell? In the end we don't have nearly enough information or stake in this, and I think it's insulting to pretend to put ourselves in her spot.
posted by Solon and Thanks at 7:14 PM on November 13, 2008


BrnP84: Her parents may understand the basis for their daughter's decision but they should not support it. She is a child and the hopelessness you describe is not something they should endorse but fight against fully.
posted by pianomover at 7:18 PM on November 13, 2008


See, this would never happen in the U.S. Her parents could simply stop paying for medical insurance for her, and that would be that.
posted by delmoi at 7:19 PM on November 13, 2008 [5 favorites]


Pianomover, there are worse things than death.

Like what? Before you answer make sure that you consider the survivor of any "worse than death" scenario that you can imagine. Your comment is an insult to any human who has survived more than you or I can imagine.
posted by pianomover at 7:24 PM on November 13, 2008


Like what? Before you answer make sure that you consider the survivor of any "worse than death" scenario that you can imagine. Your comment is an insult to any human who has survived more than you or I can imagine.

No it is not an insult to those people, because I'm not making a judgment as to whether their life is worth living. If that person says their life is worth living that is good enough for me. Now my life, I decide whether that is worth living. I decide whether my life is worth living under what circumstances, like minds could disagree, but it shouldn't be any one else's choice. Obviously, there are exceptions and that's why we have legal safeguards to protect and monitor the mentally impaired and children, but those safeguards are not an absolute bar, nor should they be. Nor should we force people to fight for their lives. That's not fair, if you want to fight then by god you should be given every opportunity and all the help the world has to offer. But ultimately the person fighting those personal battles has to have the power to decide if the battle is worth it to them. This girl has fought since she was 5, she has the right to die on her own terms.
posted by whoaali at 7:37 PM on November 13, 2008 [2 favorites]


Solon and Thanks: While I hope that you are never in a situation such as this I would hope that if you were those around you would in your darkest moments loudly reiterate "Do not go gentle into that dark night."
posted by pianomover at 7:38 PM on November 13, 2008


not something they should endorse but fight against fully.

They have been fighting it, for 9 years. Like Solon said we can't speculate what this girl's "odds" are, if she made the right or wrong decision b/c it's not that simple. It's really boggling my mind how someone could be so critical of the parents, not only are they going to almost certainly lose a daughter but they are being hated on by a third party observer who knows about an hour's worth of background. What if they chose to force their daughter into the surgery, think of the headlines for that "Parent's force child to have heart transplant against her will." They have chosen, quit dippin into your neighbor's Kool-Aid.
posted by BrnP84 at 7:41 PM on November 13, 2008


Who is to say that what's true for you is true for me, that you feel the same pain I feel, that the sum of your life experiences is equal to mine. Fuck the idea that you can decide when to drink, when to drive, when to smoke, what to eat, where to go, who to sleep with, and to put yourself into countless positions where you could kill or maim yourself---but you can't speak for yourself about your own death.

13 is young, but it's not like chica just woke up today all "Shit I feel good, I hope I DIE today!".

I'm not sure why suckling a morphine drip in a state of catatonic, pants-shitting stupor is for some reason considered valid or worthwhile (at least compared with being awake and alert and able to see and comprehend what is happening to you), and while I seriously fear "trapped-in" syndrome, this young lady's case isn't one of those.

Of course, I also reel at a defined, western concept of "a life worth living", mentioned above as including love and babies and the acquisition of material bullshit; whether or not that acquisition is from the confines of a mobility assist device or otherwise.

Your God is not my god, your Life is not my life, your Home is not my home, and your Dreams are not my dreams. Come off it.

And yes I fully agree with forcing kids to get medical care when their parents are religious nutters, and @delmoi---most states require public hospitals to perform life-saving medical practices on children regardless of health coverage.
posted by TomMelee at 7:43 PM on November 13, 2008 [2 favorites]


Do not go gentle into that dark night

Dude it's been 9 years, lesser people may have called Dr. Kevorkian after 2 or 3.
posted by BrnP84 at 7:43 PM on November 13, 2008


Pianomover, my last visit with my husband's stepdad saw him on a mattress-on the floor-in an Alzheimer's wing-on the mattress because he kept falling out of bed-in the last days of his life with a brain tumor. (the same kind Kennedy has.)

I don't believe in euthanasia, but I believe the last brain operation he had that turned him from someone who was functioning at least as well as Kennedy to a man who was rarely if ever lucid should never ever have happened. His widow said as much to us that day.

He was trying to prolong his life, and wound up in a condition that he would never ever in a million years wished to be in. Because of the surgery. If he got extra days out of that surgery, they were NOT WORTH IT.
posted by St. Alia of the Bunnies at 7:43 PM on November 13, 2008 [1 favorite]


Like what? Before you answer make sure that you consider the survivor of any "worse than death" scenario that you can imagine. Your comment is an insult to any human who has survived more than you or I can imagine.

And your comment is an insult to every human who has ever chosen suicide, even in the face of more pain than you or I can imagine, as well as to the many humans who have said, clearly and repeatedly, that there are things worse than death to them. On top of that, each and every survivor of chronic and/or fatal disease has chosen to stay in the game -- decided that whatever it is they have is not worse than death. Your glib response belittles them, too, because it patronizingly assumes that their dilemma has a simple and obvious answer, and that they would deserve less respect if they choose otherwise.

Other people do not need your prior approval to live and die as they choose. No amount of platitudes and ersatz moral superiority is going to change that.
posted by vorfeed at 7:52 PM on November 13, 2008 [2 favorites]


Brn84: Okay I won't "dip into my neighbor Kool-Aid"
Was the will of this child engaged prior to all other treatments? I'm not going to speculate on the obviously difficult decisions that all parties involved have had and will have to make. My point is that a 13 year old who is currently not hospitalized, attending school and while compromised should not have the endorsement of her parents in a decision that will prematurely terminate her life.
posted by pianomover at 7:56 PM on November 13, 2008


After following this story for the past few days, all I can think is that if I was every put in the same horrible position as her parents (and I hope on everything I believe in I never am) that I could be as un-selfish as her parents and allow my child to make such a choice.

Also, for the insinuations that the parents are ignorant by going against suggested medical advice - as well as living for nine years with a child undergoing major medical treatment, the mother is an intensive care nurse. Doesn't mean she's an expert, but I would imagine that gives her a bit of knowledge and insight into things like the effects and efficacy of major surgery, and quality of life for cancer sufferers who undergo other treatment.
posted by Megami at 7:56 PM on November 13, 2008


Like what? Before you answer make sure that you consider the survivor of any "worse than death" scenario that you can imagine. Your comment is an insult to any human who has survived more than you or I can imagine.

Well, there was that time the SS asked me where Anne Frank was hiding. They knew I knew. It was either my life or hers.

----

Pianomover, I would suggest some unstated premises behind your comment are that everything is survivable (indeed, when looking from a survivor's perspective, survival is taken for granted), and that survival (read: postponing death) is necessarily a good thing.

Neither are true.

Hannah has chosen a certain death which she hopes will be painless and in her own bed. This is the kind of death which I would choose and which you perhaps would choose too, over any number of agonising, humiliating, soul-destroying processes followed by a very short mean expected lifetime.
posted by magic curl at 7:56 PM on November 13, 2008 [1 favorite]


My point is that a 13 year old who is currently not hospitalized, attending school and while compromised should not have the endorsement of her parents in a decision that will prematurely terminate her life

You're still dippin homey, death on the surgery table could terminate her life prematurely too, so could organ rejection, so could not getting the surgery at all, we don't know. Give the family the respect to allow them to come to whatever decision they choose.
posted by BrnP84 at 7:59 PM on November 13, 2008


I'm not going to speculate on the obviously difficult decisions that all parties involved have had and will have to make. My point is that a 13 year old who is currently not hospitalized, attending school and while compromised should not have the endorsement of her parents in a decision that will prematurely terminate her life.

I'll take your first sentence at face value. But when you declare what her parents should and shouldn't do, this can reasonably be read as more than speculation. You're saying, in fact, that you know better than them.
posted by magic curl at 8:04 PM on November 13, 2008


Vorfeed: What? My response is to a previous comment.

I'm not saying that some may wish to leave this world but I have no way of determining whether those who did have any second thoughts.

Repeated claims that things are worse than death are meaningless unless we can get a report from the afterlife.
posted by pianomover at 8:08 PM on November 13, 2008


Repeated claims that things are worse than death are meaningless unless we can get a report from the afterlife.

Pianomover, we have a reasonably good understanding of what the experience of dying is like, from people who have been resuscitated and the doctors who observed them. Go google.

But I suspect you really mean the question of what's worse than being dead. As a matter of fact, we know that too. We get those reports from the afterlife all the time. Go to a mortuary. Ask a corpse what being dead is like. Listen carefully to what they say. Watch their body language. Notice their reactions to the distress that they feel. You will be informed.
posted by magic curl at 8:17 PM on November 13, 2008


Solon and Thanks: While I hope that you are never in a situation such as this I would hope that if you were those around you would in your darkest moments loudly reiterate "Do not go gentle into that dark night."


If I or a loved one, god forbid, am ever in such a situation I sincerely hope that busybodies like yourself would leave me and my family be.
posted by Solon and Thanks at 8:20 PM on November 13, 2008 [4 favorites]


magic curl: You cannot experience death without dying - a description of what it is like to die from a non dead person is impossible.

I'm not going to talk to a corpse because the are dead and can't hear me or talk. Golly where you been?

By the way my parrots dead also.

Don't tell me it isn't.
posted by pianomover at 8:25 PM on November 13, 2008


Solon and Thanks: I love you
posted by pianomover at 8:27 PM on November 13, 2008


you need to cool it and back off. you went beyond appropriate in your last comment to me.
posted by Solon and Thanks at 8:29 PM on November 13, 2008


I'm not going to talk to a corpse because the are dead and can't hear me or talk. Golly where you been?

IHBT
posted by magic curl at 8:30 PM on November 13, 2008


Back on subject, how I became a busybody in responding to several major news outlets reporting of a tragic and sad story linked within a website designed seemingly for this purpose is beyond me.

I imagine a busybody looking somewhat like my Aunt Connie wondering whether my father still can't make a spicy chili not someone concerned that parents are showing deathly ill children the door to eternity.

Comments appropriate or not, I hope that when you have a few more years under your belt you will be able to more fully realize how important our one chance at life is and not be so quick to give up the ghost.
posted by pianomover at 8:42 PM on November 13, 2008


pianomover is Bill Frist's sockpuppet, right?
posted by casarkos at 8:49 PM on November 13, 2008


drpynchon and others: did you read the bit that said "Doctors warned Hannah that a transplant was her only hope of long-term survival but that the immuno-suppressant drugs that she would have to take to prevent her body rejecting the donor organ could lead to a recurrence of the leukaemia."

My guess is this is an important factor in her decision. The prospect of a happy outcome post-transplant is not nearly as clear cut as it might for someone who, say, needed a transplant because damage from viral infection that could not recur.

A colleague of mine has a little boy, about four, who is currently receiving treatment for leukaemia. It is a struggle, but the kid is a trouper, and it sounds as though he may well win. In fact this is a trope with childhood leukaemia stories - the child heroically struggles, their energy and determination amazes the adults, and eventually they recover (or die).

In this case though, the kid has had severe illness her entire life as she can remember it, and there is no future without significant risk of more pain and suffering.

Apropos the slippery slope concerns - yeah sure. It is a slippery slope, and I don't like what's at the bottom either. However, in my mind this case is clearly at the acceptable extreme.

I think if you're arguing with a vision of a happy bouncy teenager who got the transplant in mind, you ought to spend a few moments imagining the bedridden leukaemia sufferer whose body is rejecting her new heart saying: "I'm so glad you made me suffer to the end for your principles, you fuckers."
posted by i_am_joe's_spleen at 8:56 PM on November 13, 2008


You know, I'm terrified of death, to the point of mostly just trying not to think about it if I can help so that I don't end up sitting around feeling freaked out and depressed by my own mortality or that of all the people I love. That I'm going to die some day is one of the great mood-ruiners.

As an atheist, doubly so, really: I have no comforting notion of an afterlife to rely on, just the belief that when it is over, it's over, and I'll be too dead to even know about it. Just this bleak, yawning, inescapable promise of meaningless, purpose-defeating unbeing some n decades from now. It's a horrible thing.

So I understand the motivation to say, "no, look, life is more important than anything else, choosing to die when you could live makes no sense". Certainly, living a happy and healthy life right now, I can't see myself electing to die given the option.

But, for all that, I think it's a failure of imagination or a failure of empathy or a mix of the two to reject outright the notion that someone else would—especially in powerfully different and less happy circumstances—think about this differently than I do. To presume that that difference is a failing seems a bit arrogant and unkind.
posted by cortex at 9:04 PM on November 13, 2008 [4 favorites]


I don't know how I feel about this. I can understand her not wanting to go through another one step forward two steps back treatment and she might be legitimately out of luck.

Still, if a transplant could get her another 10 years, what would her prognosis be like then? We're much better at dealing with the immune system now than we were 20 years ago. How long will it be before we can convince our immune system to add new things (like a transplanted heart) to the model of self? Or how long before they can culture some of her own cells and run her off a new heart?

Yeah, I believe in technology. You're welcome to disagree but don't get uppity when I shoot you in the face with a charged particle beam.
posted by Kid Charlemagne at 9:06 PM on November 13, 2008


Back on subject, how I became a busybody in responding to several major news outlets reporting of a tragic and sad story linked within a website designed seemingly for this purpose is beyond me.

I think it's that people feel as though you're taking the busybody position, pianomover. By taking the view that decisions of this nature aren't solely a matter for the patient, or in the case of a minor, for the patient in consultation with their immediate family.

I'm fond of the busybody position as well. For example, you sound rather depressed to me. Therefore I insist that you take the medication for depression. What do you mean, you don't feel depressed? I'll be the judge of that, my friend.

I hope that when you have a few more years under your belt you will be able to more fully realize how important our one chance at life is and not be so quick to give up the ghost.

I daresay that I've got a few more years under my belt than you have yours. Nevertheless, the quality of my life has always been at least as important to me as the quantity of it. I'm very happy that you'd prefer to cling to yours at all costs, despite the possibility that you may be in terrible pain, unable to communicate or do anything for yourself, etc. I'm not seeking the right to intervene in your decisions in that process.

All I ask for you is the same respect for my decisions that you'd have me award to yours.

Unless you happen to be a Jehovah's Witness, in which case, all bets are off. Someone's religious beliefs is not a reason to allow them to cut short the life of their child when it may be saved with a very low prospect of negative consequences.
posted by PeterMcDermott at 9:15 PM on November 13, 2008 [1 favorite]


By the way my parrots dead also.

Don't tell me it isn't.


Nononono, no, no! 'E's resting!
posted by Talez at 9:20 PM on November 13, 2008


I think some of the healthier people don't understand how debilitating a chronic, much less a terminal, condition can be. Even minor pain or illness makes everything harder; even a manageable chronic condition can mean constant worry (what if it flares up/gets worse, what am I doing that might make it worse).

I've got a minor problem with some of the muscles in my ribs and back, probably just a strain (and it's actually getting much better); but combined with a cardiac history and a bad cold, even a bout of coughing that aggravates the muscular pain and leaves me out of breath and my ribs aching, puts me in fear of a heart attack. And knowing that a cold means inflammation, and inflammation increases cardiac risk, and.... well, it's just NOT FUN at all. It's a constant drag, an ever-present worry. And the body-ache from the flu, and the chest congestion -- sure, it's probbaly just the flu, but....

It makes life a lot less fun, and the better your imagination or knowledge of disease progression, the worse it is. After more than half a lifetime of chronic life-threatening illness, I'm sure Hannah's very well educated in her condition and her limits, and the quality of her life. And she rightly doesn't want to be miserable. She (rightly or not) doesn't see a payoff in increased suffering. Or even increased uncertainty.

At least now, I see her thinking, she knows what's next, and can concentrate of preparing for it and enjoying the time she has left. And even in my much much better condition, I can see the attractiveness in that.

I'm the hang-on to the bitter-end there's-no-afterlife type, but I have no trouble at all understanding someone thinking, "this sucks, and I don't want to keep rolling this boulder up hill."
posted by orthogonality at 9:28 PM on November 13, 2008 [1 favorite]


What if the sun don't rise when it's s'posed to? What if a frog had wings? What if a million monkeys typing a million days could accidentally cure cancer and find the root of human happiness?

What if people en masse allowed other people to decide for themselves what was best for them.

Scary the possibilities, eh?

Really, I don't think its any of our places to really even have an opinion in any of this, and would that I were a certain 13 year old I would respectfully ask my parents to keep the facking paparazzi out of my room, unless of course it meant I might get to meet ol' Hannah Montana or Justin Timberlake or Jesus H. Merriweather Fucking Christ or whomever those kids are talking about these days.

My kid? My town? I'd be punting people out of the room if my daughter so much as breathed she didn't like the attention.

No, really. Read the book "death be not proud." It's only through some ridiculous cultural folkways that we've somehow decided that death is a) shameful or b) anyone else's business.
posted by TomMelee at 9:30 PM on November 13, 2008


acro: Thanks for the link. Despite the fact it made me cry.
posted by aclevername at 9:33 PM on November 13, 2008


casarkos (?) What does that Frist reference reference, exactly?

And puppets, what? Bill Frist is from that other era, no?

Parents should not aid in their children's, their parent's, or their own deaths. There, I said the D-word. If you have not sent a child into the cold hard darkness of a surgery ward at 7 a.m. and heard the words before they put her under "Daddy, I'm scared," when you know this is the one thing that will help her live a life you or I might choose, then don't judge parents who make the leap and live through the aftermath and see that person who was once a perfect little girl licking an ice cream cone at Coney Island and trick or treating in the rain perfect again after months in a body cast, if you don't know the meaning of possibility then who are you to forejudge any outcome? Sorry you younguns on here you know not of what you speak. Have a baby or two, preferably at home with your beloved, and check back with me later.

Meantime, keep that little girl alive until she can decide, and even then, talk her of the ledge. Life and how to live it.
posted by emhutchinson at 9:36 PM on November 13, 2008


emhutchinson, I don't judge the parents in your anecdote.

Neither do I judge parents who have done that again, and again, and again, with an increasing conviction that things will not be all right.

13? That's about when your power to deal with "Daddy, I'm scared" starts to fade. A 13 year old is no longer a little girl. I should know, I have one.
posted by i_am_joe's_spleen at 9:59 PM on November 13, 2008


PeterMcDermott: I feel like I'm writing in a foreign language, why is this story news? It's news for the very reason that we are discussing.

The news articles appear to state the decision to forgo any further treatment is the decision of the child a decision that has been arrived at with the consent of her parents. A child of 13 should not be put in the position of having to make the decision as to whether their life is worthy of any additional treatment. If as you state that this decision has been made in consultation with her parents, then we can assume that they agree that her life is no longer worth trying to save. Sorry but as the parent of four children I can't go for that (Hall & Oates).

Who are we to judge the quality of anyone's life? I never said that if this childs or any other persons life were to end early that is is less of a life than an old coot that you claim to be (I'm 48 by the way).

As an old coot you are free to make your decisions, that's what being an adult is about, my greatest problem with this situation is the parents willingness to share with the public their support of their daughters fate. It bothers me - can you tell?

Finally as a confirmed atheist keep a your fucking religions out of the medical world.
posted by pianomover at 10:55 PM on November 13, 2008


When I read comments in this thread, I mentally ignore everthing that follows "as a parent" or "I cannot imagine."

You are not specially qualified because you are parents, and you need bigger imaginations.
posted by i_am_joe's_spleen at 11:05 PM on November 13, 2008 [3 favorites]


joe's spleen.. Seeing as how I research and take care of people with solid organ transplants, I'm aware that recurrent leukemia/PTLD is a risk. How big a risk? Well, in the last case series I read 1 in a series of about 15 kids who received heart transplants for anthracycline-related cardiomyopathy following chemotherapy developed cancer recurrence within about 5 years of transplant. But it's hard to know exactly what the true risk is for any given particular cancer though, as the published data on this is fairly limited as far as I know, and one would need a lot more info about her case to even make a guess at what her risks are. Again though, I'm compelled to point out that refractory heart failure to this extent isn't a walk in the park either, and is very likely to carry a higher mortality rate than the transplant road.
posted by drpynchon at 11:06 PM on November 13, 2008


drpynchon: I yield to your expertise.

I am making the (unwarranted? I hope not) assumption that her parents have received a best guess from their advisors, and didn't like it.
posted by i_am_joe's_spleen at 11:11 PM on November 13, 2008


Whenever I see discussions like these, I think of my own life, and my own autonomy, and I wonder how my own life will end. I realize I understand why some people might want to plan in advance for long-term irreversible illness. Like procuring great amounts of very powerful drugs and stashing them in a safe place, like in a locked box inside a safety-deposit box, because doctors "first do no harm," and who wants to be stuck in pain for the rest of their days? I hope my life never comes to such hard choices, and even more terrifying, at what point does one choose to end their own life, while they still have the ability to do so? If one is in a nursing home or hospital or whatever, they do their damndest to make sure you can't hurt yourself. And if one were to send someone to get their "package" from the deposit box, then you run the risk of putting them in the position of being an accessory to suicide (if there is such a distinction).

I'm sorry, it's late and I'm crazy.
posted by exlotuseater at 11:13 PM on November 13, 2008


No no I am Joe's spleen! Rant rant rave rave.

As a child of a parent you confuse me.

I imagine I cannot imagine myself sitting here for another second.

I love everybody.
posted by pianomover at 11:16 PM on November 13, 2008


I am making the (unwarranted? I hope not) assumption that her parents have received a best guess from their advisors, and didn't like it.

That may probably be the case. Or that they stopped believing what the doctors were telling them (can anyone blame them? I can't). Or that even accepting a solid chance at a good outcome with a transplant they still couldn't bare another minute in of hospitals/medical care. Or that the best-case-scenario offered just wasn't good enough after all they'd been through.

I wouldn't begrudge these folks any of these and other legitimate, rational reasons not to go ahead with a transplant even if I'd advise them otherwise.
posted by drpynchon at 11:36 PM on November 13, 2008


emhutchinson and pianomover, both of you obviously value continuing to live, regardless of circumstance, over death. That's fine--for you. If you were in her parents' position, you would fight against the choice she's made. If you were in her position, you would not make the choice she's making. Again, that's fine--for you.

But you can't truly know this young woman's circumstances, or what she's been through, or what her parents have been through, other than on a very surface level. And even if you could, it still wouldn't make you "right" and them "wrong". There is no right or wrong in a situation like this; there is only the choice made (in this case, certainly) with all the pertinent information available, with intimate knowledge of the situation, and in accordance with her own beliefs and preferences. It's her life, and her death--not yours.

welcome back, dios!
posted by tzikeh at 11:39 PM on November 13, 2008 [2 favorites]


A child of 13 should not be put in the position of having to make the decision as to whether their life is worthy of any additional treatment.

Nice turn of phrase, but if you read the article, it wasn't a question of whether or not her life was worthy of additional treatment, but rather whether or not she wanted additional treatment.

If as you state that this decision has been made in consultation with her parents, then we can assume that they agree that her life is no longer worth trying to save. Sorry but as the parent of four children I can't go for that (Hall & Oates).


Ok, I'm going to ignore the fact that you quoted Hall & Oates in your comment and get to meat of the argument (but really, Hall & Oates? Really?) It doesn't matter how many children you have - it comes down to simple respect. Respect for a person, who, although a child, has been through more pain than you can ever imagine. A child who has said "no more." Perhaps it's because you're a parent that you can't see this, but for me, I understand. No one has the right to tell this girl that she should suffer more for an unforseable outcome. She's the one who has endured 3/4 of her life terminally ill, and it's her right to decide what she wants. I have tremendous respect for her parents and find myself almost paralyzed by their love for their child. This is another human being we're talking about - 13 or 30, she has the right to end her suffering however she sees fit.
posted by The Light Fantastic at 12:51 AM on November 14, 2008 [2 favorites]


Meantime, keep that little girl alive until she can decide, and even then, talk her of the ledge. Life and how to live it.

Comparing her situation to "being on the ledge" is not fair at all, this is not the same thing as suicide and to claim that she is attempting suicide is a bold and really shitty thing to say. Her decision is tough enough and now she's got people accusing her of "giving up", I'm sorry but if I were her I'd probably slap you across the face.

Keep that little girl alive until she can decide

Well how old would that be exactly, 16? 18? In that case we would probably have to force the surgery on her so that she can stay alive long enough to determine if she want's the surgery, that's quite the paradox. I also found these quotes from another article

"I'm not a normal 13-year-old. I'm a deep thinker. I've had to be, with my illness. It's hard, at 13, to know I'm going to die, but I also know what's best for me."

I know we all like to think we're "deep thinkers" and more mature than we think we are, in her case though I'm actually believing it. Shit yea she's no normal 13 year old, what kind of normal 13 year old has had to contemplate death on a daily basis for 9 years, that's gonna make anyone grow up real fast. She's capable NOW to determine what's best for her life, get off your "I'm an adult" high horse and give the kid some respect.

Sorry you younguns on here you know not of what you speak. Have a baby or two, preferably at home with your beloved, and check back with me later.

Yea I haven't had a kid but if I'm not mistaken I think Hannah's parents have had a baby or two.... if not than this post is a lot weirder than I thought.
posted by BrnP84 at 12:53 AM on November 14, 2008


13 is not a child. It isn't. Pretending that this girl is a baby dismisses not only her bioethical right to make self deterministic choices about her own body, but it reduces the entire subject of allowing humans to choose to die to an trite argument.

Gods forbid that any of us ever find ourselves in the position of Ms. Jones or her family. But it isn't us, it's her and it's them. And to play armchair ethicist, with no clear argument other than "Well, I think she's too young", is absurd.

A few years ago I was in a really bad accident. I spent a lot of time in the hospital. I had a number of surgeries. I had follow up surgeries as recently as last year. Almost 10 years I've been in and out of hospital...there isn't a single day when I don't get up in the morning and hurt, and I can't remember the last time I went to sleep without hurting...and my injuries were fucking minor compared to what Ms. Jones has endured.

To tell anyone that THEY must endure continuous, never ending, never resolvable pain, because you're squeamish about death is heartless and cruel. But to do it in the name of "won't someone think of the children" is obscene.
posted by dejah420 at 1:04 AM on November 14, 2008 [9 favorites]


There are definitely arguments to be made for both sides. In principle, I am generally in agreement with the patient's rights argument, but I am more than a little uneasy at a life-and-death decision being made by a 13 year old, no matter how mature.

Consider a mature 13 year old demanding autonomy regarding sexual relations with an older partner. Would he or she be deemed competent to make a decision in this matter? If you say not, then it's difficult to argue that they are competent to make a decision of much greater import.
posted by Jakey at 5:39 AM on November 14, 2008 [2 favorites]


Consider a mature 13 year old demanding autonomy regarding sexual relations with an older partner. Would he or she be deemed competent to make a decision in this matter? If you say not, then it's difficult to argue that they are competent to make a decision of much greater import.

That's a strange and unfair analogy to make, first what difference does it make that the partner is older, if we're talking about a 13 year old having sex than that arguably shouldn't happen anyway, regardless of the partner's age. Second I find it a bit offensive that you would compare Hannah's situation to her right to a sex life, we're talking about a girl with leukemia wanting to cope with it her way, not a girl trying to get her rocks off. And I don't find it difficult to argue at all, deja420 took care of that just fine.
posted by BrnP84 at 6:26 AM on November 14, 2008


While I hope that you are never in a situation such as this I would hope that if you were those around you would in your darkest moments loudly reiterate "Do not go gentle into that dark night.

"fine," i'll reply - "give me a couple of bottles of whiskey and i'll go out the way dylan thomas did"
posted by pyramid termite at 10:02 AM on November 14, 2008 [2 favorites]


Pianomover, there are worse things than death.

Like what?


I'm not at all afraid of death. (My own, that is. The idea of the amount of grief I would feel at the [unfortunately inevitable] deaths of any of my loved ones gives me a pre-emptive case of the howling fantods, so I try not to think about it too much.) I'm a Buddhist, not an atheist, but I'm well aware that this life might just be the only one I'll ever get. What exists after this... might just be nothing at all. I wasn't bothered by the nothingness before I was born, so I presume it won't bother me after I die either. It actually comforts me to think that when I die, I won't know that I'm dead and I won't know that I've ever existed - it's a reminder that the present moment is the only moment that exists and living now is something to be experienced fully.

And having that full-ness of life taken away from me - that, to me, would be worse than death. I want to live every moment that I have. And to me, living a few months with my loved ones in a comfortable environment would beat having years of a sort of life in limbo constantly waiting for the next treatment in a hospital bed, especially if I knew that normalcy *after* those constant treatments was far from guaranteed.

I've had a near-death experience during a horribly painful illness. I was six years old at the time, and I can tell you that I was in so much pain that I literally wanted to lie down on the floor and die. That didn't scare me at all. What was scary is when I had to wake up, deal with the pain, and go through weeks of treatment. And that was just one acute illness. If I had to be in the hospital for leukemia for years upon years of my life, I would definitely view death as a viable option and not as something to be avoided at all costs.

I have epilepsy, which gives me a much, much higher risk than the normal population of just suddenly dropping dead. I've made my wishes concerning heroic measures and what to do with my body known explicitly to my next of kin and will be drawing up a will in the near future despite my relatively young age. Death is a reality. It's going to come whether you want it to or not. Our attempts in Western culture to put it off and pretend that we can keep it from happening are based in fear. Why fear what has happened to every biological creature since the dawn of time? Death is as natural as rain, as snow, as birth... hell, it's as natural as pooping. It's gonna happen.

I can accept that I will die. I can not accept the idea of living a life full of pain just for the sake of living. I am blessed with free will, which I intend to use to make sure that the quality of my life remains full as long as possible. I do not want to be kept alive merely for the sake of continuing to breathe, nor would I choose living an extra ten years if those ten years were guaranteed to be painful at best and excruciating at worst. I would much rather have four normal, joy filled months with my family than ten years spent on pins and needles wondering when the other shoe was going to drop.

Yes, death may be the worst thing that you can imagine and that's totally valid, but that is not a perspective shared by everyone.
posted by grapefruitmoon at 10:29 AM on November 14, 2008 [3 favorites]


Pianomover, there are worse things than death.

Like what?


Unrelenting suffering. The slow loss of all mental faculties. Persistent vegetative states. A body and mind which both conspire against you such that your very sense of self and self control is fractured or destroyed. Undermining and betraying any trust which is ever placed in you. Being irrevocably incapable (for whatever reason) of feeling affection, empathy, love, or trust. Being persistently and consistently abusive of others. Spending your life taking and never, ever giving. Brimming with insoluble physical pain such that even a drop more morphine would shut down your breathing. Living to be feared instead of admired.
posted by chimaera at 8:02 PM on November 14, 2008 [3 favorites]


At 13, she's competent and autonomous. In Canada, Re L.D.K. (1985) found that a 13 year old girl had the right to refuse life-saving transfusions. Her right is upheld in the Charter of Rights of Freedoms in Sections 2, 3, 6-10, and 12.
posted by ageispolis at 12:59 AM on November 15, 2008


Landmark Cases Force Europe to Reconsider Right to Die.
posted by adamvasco at 12:17 PM on November 15, 2008


I share certain aspects of both sides of the argument, but ultimately I believe that she shouldn't be allowed to make the decision she is making. What is being claimed as 'bravery' and 'maturity' can also in this case be interpreted as naivety. I just don't think this is right.

"She’s absolutely fabulous. She’s so grown up and she is so good, and really brave. We’re really proud of her."

Proud of her choosing almost certain death? Increasing her chance at life, of any sort, to me is better than almost certainly committing yourself to death.

What I would worry most specifically about here is that is this really her decision? Someone this young is so easily influenced by the opinions of others without a decent amount of critical thought that I would doubt it.
posted by ataylor at 5:56 PM on December 3, 2008


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