Australian court rules that 6 year old with brain cancer should be treated palliatively

[mistafab]

I feel so bad for the lil guy/gal. 6 years old and you just want to watch barney and hang with your parents. The parents must feel devastated - smiling through their tears in their childs last precious moments.

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[vendtex]

No, I think the arguments are the same. The refusal of vaccines or chemotherapy has nothing to do with "child best interests". It has to do poor parental education or general distrust of medicine. They are projecting their own beliefs on their children and those projections have negative consequences. I took care of a series of children whose parents refused Vitamin K because babies back on the day didn't get Vitamin K and they survived so modern medicine is irrelevant. Unfortunately when their children had intracranial hemorrhage, their beliefs were clearly terribly misguided and ended up harming their children.

And the arguments against vaccines by the antivax groups are similar to chemo....brain damage, death, autism or severe developmental delays etc. Incidentally, Australia has a rather militant anti-vaccine group I think that goes by Australia Vaccine Network. I haven't kept up with them lately but have gotten into it with some of their members about a decade ago.

 

[SurfingDoctor]

And the arguments against vaccines by the antivax groups are similar to chemo....brain damage, death, autism or severe developmental delays etc. Incidentally, Australia has a rather militant anti-vaccine group I think that goes by Australia Vaccine Network. I haven't kept up with them lately but have gotten into it with some of their members about a decade ago.

California doesn't do much right (and I'm a native Californian) but the law mandating vaccines for enrollment in public schools was great child welfare legislation.

 

[cbrons]

If I read this correctly:

Treatment would give the child a 50-60% chance of long term survival, parents sued to ensure 0% survival, and a judge said, "ok, fine, let your child die without treatment, but just for this one case, not a precedent"

Assuming I didn't miss something I think that's completely messed up. 5% chance would be one thing, over 50% chance to live a long healthy life seems like a no-brainer to treat.

I think you did read incorrectly. From what I understand, the parents already refused some of the treatment, and the child at the time of this ruling has a very bad prognosis.

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[ERDOC555]

I think you did read incorrectly. From what I understand, the parents already refused some of the treatment, and the child at the time of this ruling has a very bad prognosis.

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Yeah, I definitely hadn't realized that the ruling was after things had already gotten worse, which makes much more sense.

I had skimmed it originally and though the child still had good odds when the judge made the call.

 

[Stagg737]

Comparing chemo-radiation therapy to vaccines? I don't know if you're just trying to win an argument, but you're way off the mark and I can't believe you got likes for that. That would be like saying, "refusing ECMO? You sound like a Jehovah's witness refusing a blood tranfusion!"

The extent/risk of damage may not be equivalent, but the general argument and lack of medical understanding by the parents is the same in both cases. Given that the parents in the article already lost their right to medical decision making once due to wanting to pursue "alternative treatments". I'd guess that in this case it is exactly the same argument an anti-vaxxer would use and I highly doubt that they have critical thinking skills are at the level that many people here are giving them credit for.

 

[Donald Juan]

The extent/risk of damage may not be equivalent, but the general argument and lack of medical understanding by the parents is the same in both cases. Given that the parents in the article already lost their right to medical decision making once due to wanting to pursue "alternative treatments". I'd guess that in this case it is exactly the same argument an anti-vaxxer would use and I highly doubt that they have critical thinking skills are at the level that many people here are giving them credit for.

I think we need to walk the line of saying parents don't have critical thinking skills so I can take away their rights with a very, very critical approach. It is not something that we should go into lightly, and to compare a vaccine which is benign in 9999/10000 cases to a treatment that is always harmful and may only have a 50% cure rate, and consider both as equivalent reasons to take away a parents right to autonomy is ridiculous. The general argument and lack of medical understanding are not the same, and a parent's medical understanding is not what dictates whether or not we decide to take away their rights.

 

[SurfingDoctor]

I think we need to walk the line of saying parents don't have critical thinking skills so I can take away their rights with a very, very critical approach. It is not something that we should go into lightly, and to compare a vaccine which is benign in 9999/10000 cases to a treatment that is always harmful and may only have a 50% cure rate, and consider both as equivalent reasons to take away a parents right to autonomy is ridiculous. The general argument and lack of medical understanding are not the same, and a parent's medical understanding is not what dictates whether or not we decide to take away their rights.

Except those parents refused treatment when the odds were better than 50%. It became 50% due to their actions. Medulloblastoma has a greater than 70% cure rate. These parents guaranteed those would never be the odds for their child.

Most parents are great advocates for their children. But when parents can't make reasonable decisions for their children someone has to be able since the children don't get a say.

 

[Donald Juan]

Except those parents refused treatment when the odds were better than 50%. It became 50% due to their actions. Medulloblastoma has a greater than 70% cure rate. These parents guaranteed those would never be the odds for their child.

Most parents are great advocates for their children. But when parents can't make reasonable decisions for their children someone has to be able since the children don't get a say.

Do we know this is medulloblastoma? I'm not seeing that in the original article. "I do see They estimated at the time that the recommended treatment would give Oshin a 50 to 60 per cent prospect of being alive in five years which, if achieved, would be regarded as a "cure", giving Oshin a good chance of a long life." This implies that when they initially held treatment it was a 50-60% chance. The article specifies that the child's chances of survival were greatly decreased at the time this was brought to court, which seems to be long after they were giving him 50-60% 5 year survival rate.

I'm not even sure that a 70% 5-year survival rate means that it is unreasonable to forego treatment when the treatment itself is harmful. If this was a situation with an adult I wouldn't push the issue too hard....I would lay out the options, I would almost certainly lean in favor of treatment in my recommendations, but as someone who has seen how difficult cancer treatments are I wouldn't feel inclined to do everything to push them toward therapy, either.

I'm also thinking...when I am the clinician who took the parents rights away, and after harmful treatments that put the child through pain and stress and they still are looking at death as the final outcome but with a much worse quality of life leading up to it, how do I justify what I did? Because the odds were in my favor? Because the parents were (and still are) too dumb to understand how logical my reasoning is?

 

[SurfingDoctor]

Yes, it is in a different article about the story that stated it was medulloblastoma. This discussion is separate of what is going on now, it is a discussion of the parents not taking the appropriate actions to begin with. Of course if someone has a terminal prognosis, which I would not agree that 50% survival signifies, than palliative care should be offered. This is not about that.

And treatment for something with a 70% survival should not be undertaken because of side effects of the treatment? Why treat anything? Sepsis survival is 50 to 70%. Should we just stop because the treatment for sepsis has side effects? I guess with any diagnosis, no matter the chance of survival, the other option should be palliative care? Antibiotics can cause anaphylaxis so for strep throat we should offer Penicillin or Pentobarbital if the parents want.

As for the "if this was an adult" that is the whole point, it's not.

You're welcome to your opinion. Again in pediatrics, one's job is to treat the patients, not one's feeling about the parents. If you don't think so, that's fine but you probably shouldn't care for pediatric patients if you can't separate the interests of the parents from the interests of the child when those interests conflict.

 

[hallowmann]

I gotta be honest, I'm somewhere between you guys on this. I don't like the idea of pressuring to treat, but I've also had personal experiences of when people were so against "pressuring to treat" that it amounted to, an albeit good intention-ed, "pressuring to die". They convinced a family member that their situation was hopeless, resulting in depression, plenty of dilaudid, dehydration and malnutrition, a trip to the ICU, physical deterioration, only to be pulled out by family (also physicians), weaned off the pain meds, regain lucidity, and recover to a much better condition in a matter of weeks. I don't know. Its a fine line.

 

[Donald Juan]

Yes, it is in a different article about the story that stated it was medulloblastoma. This discussion is separate of what is going on now, it is a discussion of the parents not taking the appropriate actions to begin with. Of course if someone has a terminal prognosis, which I would not agree that 50% survival signifies, than palliative care should be offered. This is not about that.

And treatment for something with a 70% survival should not undertaken because of side effects of the treatment? Why treat anything? Sepsis survival is 50 to 70%. Should we just stop because the treatment for sepsis has side effects? I guess with any diagnosis, no matter the chance of survival, the other option should be palliative care? Antibiotics can cause anaphylaxis so for strep throat we should offer Penicillin or Pentobarbital if the parents want.

As for the "if this was an adult" that is the whole point, it's not.

Your welcome to your opinion. My opinion is based on 10 years of pediatric experience and seeing dozens of children who were harmed as a result of their parents decisions or actions. How many pediatric patients have you treated who have been harmed by parents or caregivers?

Again in pediatrics, one's job is to treat the patients, not one's feeling about the parents. If you don't think so, that's fine but you probably shouldn't care for pediatric patients if you can't separate the interests of the parents from the interests of the child when those interests conflict.

Antibiotics are not chemotherapy. Antibiotics are not radiation. I would very much like to see your source that sepsis has a 50% survival rate...I'm literature searching it right now, these numbers only seem partially correct for children with multiple comorbidities including leukemias, lymphomas, and other causes of immunodeficiencies prior to acute sepsis or presenting to PICU with decompensated shock or multiorgan failure. I would also like to see your other sources on this individual case as I find this a very interesting ethical situation. I understand that there are times where the parental rights must be taken away. I am not fully convinced in this case that the parents are completely in the wrong.

I appreciate your input as a practicing physician. I won't resort to proposing who you should and shouldn't treat because you disagree with me, or that you don't seem to understand the basic difference between invasive and harmful treatments vs benign treatments.

 

[SurfingDoctor]

Antibiotics are not chemotherapy. Antibiotics are not radiation. I would very much like to see your source that sepsis has a 50% survival rate...I'm literature searching it right now, these numbers only seem partially correct for children with multiple comorbidities including leukemias, lymphomas, and other causes of immunodeficiencies prior to acute sepsis or presenting to PICU with decompensated shock or multiorgan failure. I would also like to see your other sources on this individual case as I find this a very interesting ethical situation. I understand that there are times where the parental rights must be taken away. I am not fully convinced in this case that the parents are completely in the wrong.

I appreciate your input as a practicing physician. I won't resort to proposing who you should and shouldn't treat because you disagree with me, or that you don't seem to understand the basic difference between invasive and harmful treatments vs benign treatments.

The 50 to 70% survival is based on adult studies. For children, it is more like 90%, though that percent starts to decrease to about 80% about 10 years post sepsis, likely due to a combination of the comorbidities and the treatment of critically ill children.

Otherwise, like I said before, you are welcome to your opinion.

 

[Donald Juan]

Ok, thanks for your opinion.

I don't know how to be kinder in this discussion. I apologize that I seem to have offended you.

 

[SurfingDoctor]

I don't know how to be kinder in this discussion. I apologize that I seem to have offended you.

I altered my post to answer your sepsis question.

I'm not offended by your opinion. Not in the least bit. But I'm also not interested in trying to convince you of my opinion either. I will keep practicing in the best interests of children.

 

[SurfingDoctor]

I don't know how to be kinder in this discussion. I apologize that I seem to have offended you.

Additionally, if you are interested in the ethics of parental refusal on harm to children, you can read this bioethics article.

https://depts.washington.edu/hcsats/FCAP/resources/Parental Refusals of RX Theor Med.pdf

I will also say, that once you've had to pronounce a child as a direct result of their parents decisions or actions, your opinion changes real quick.

 

[Donald Juan]

Additionally, if you are interested in the ethics of parental refusal on harm to children, you can read this bioethics article.

https://depts.washington.edu/hcsats/FCAP/resources/Parental Refusals of RX Theor Med.pdf

I will also say, that once you've had to pronounce a child as a direct result of their parents decisions or actions, your opinion changes real quick.

That's a very good article. I think it points out very strongly that these issues aren't black and white...not just "child has chance of survival so treat no matter what." I'm not sure if you haven't read it or if you just didn't think I would. I made a lengthy post of quotes from the article that seem to go against whatever you're trying to argue (and those didn't even include the two paragraphs justifying refusing chemo in a burkitt's lymphoma patient), but I don't think it will make a difference.

I fully understand that there are times it is frustrating to see a patient decline because they (or their parents) went against your wishes. But I also think that we as physicians like to look a patient in the eyes and say, "It will be ok, we'll do everything we can." Then, after months of torturing a human being we can pronounce them, look the family in the eyes and say, "we did all we could." These aren't the situations that change anybodies opinions, because they just make us feel more heroic. It doesn't mean we made the right decision.

 

[SurfingDoctor]

That's a very good article. I think it points out very strongly that these issues aren't black and white...not just "child has chance of survival so treat no matter what." I'm not sure if you haven't read it or if you just didn't think I would. I made a lengthy post of quotes from the article that seem to go against whatever you're trying to argue (and those didn't even include the two paragraphs justifying refusing chemo in a burkitt's lymphoma patient), but I don't think it will make a difference.

I fully understand that there are times it is frustrating to see a patient decline because they (or their parents) went against your wishes. But I also think that we as physicians like to look a patient in the eyes and say, "It will be ok, we'll do everything we can." Then, after months of torturing a human being we can pronounce them, look the family in the eyes and say, "we did all we could." These aren't the situations that change anybodies opinions, because they just make us feel more heroic. It doesn't mean we made the right decision.

Providing cancer treatment to provide 50% survival is rarely the wrong treatment. Fortunately most parents are willing to go the distance to help their children, to a point. The much bigger problem is when the point of futility is reached and parents want to keep going. This accounts for about 10%, give or take, of my practice. At least when parents refuse life saving treatment in the face of a favorable outcome, there are governing bodies to make a reasonable decisions (well, reasonable most of the time in my experience). It is a much bigger and more difficult issue when parents insist treatment when the chance of a good outcome is zero (i.e. a tracheotomy is a child who is brain dead after 45 minutes of CPR). There, the law also favors the parents. (See https://en.m.wikipedia.org/wiki/Jahi_McMath_case)

Not exactly the same issue, but it is in that it is based on the premise that the parents best interests are a reflection of the child's best interests. Any pediatrician who has practiced long enough would realize this is not always the case.

Oh, I read the article. I also had a best friend who had childhood leukemia. Fortunately his parents didn't refuse treatment and he was thankful for it. It made him a better and stronger person. He became a physician too. What if his parents refused based on personal interests/religious reasons (as done in that article) and the court system ruled in their favor? The court system is not always right.

 

[Crayola227]

I don't see how I am wrong. I'm sure the oncologists making those interpretations knew what they were doing far better than you do. You've been an intern for what? 2 months? Don't try to lord it over people.

You're absolute mastery of dodging answers to questions is impressive though. You have no grounds to challenge the interpretations of those who know this case better than you. Don't feign omniscience

Based on everything I read you were very clearly wrong.

BTW, no amount of reading prepared me for the reality of treating patients with cancer, and I don't mean to say that like now I have so much experience.

 

[smq123]

50-60% chance of living for 5 years after an expensive and stressful course of treatment with risk of infection, another cancer, diarrhea, terrible rashes, hair falling out, numbness and tingling in your extremities, etc.

Just because we can treat something doesn't mean we should. People should have autonomy to choose their medical treatment. There is so much suffering going on in hospitals around the country because people just can't let go of their loved ones.

I kind of can't believe that some of you guys are residents.

So what's your cut-off then? Clearly a 50% chance isn't good enough. 60%? 80%? Or do we only force treatment if there is an absolute, 100% guarantee that the treatment will be life-saving?

This is pretty sad. The parents had a good chance to save that little boy's life, and they opted not to. They CHOSE not to save their son's life. I am sure that they thought that they were doing right by him, but....I'm sorry, but most patients don't truly understand the risks/benefits of the treatments that they are rejecting. And when it's their own life, that's one thing. But when they are betting on the life of a 6 year old, it does make me angry.

 

[smq123]

The extent/risk of damage may not be equivalent, but the general argument and lack of medical understanding by the parents is the same in both cases. Given that the parents in the article already lost their right to medical decision making once due to wanting to pursue "alternative treatments". I'd guess that in this case it is exactly the same argument an anti-vaxxer would use and I highly doubt that they have critical thinking skills are at the level that many people here are giving them credit for.

"A mother who was ordered by the courts to let her young son undergo chemotherapy in a bid to save the boy's life has admitted she 'doesn't understand' the treatment."

http://www.dailymail.co.uk/news/art...-s-chemotherapy-doesn-t-want-brain-fried.html

 

[SurfingDoctor]

I kind of can't believe that some of you guys are residents.

Part of being in training is learning to realize what you don't know.

 

[Psai]

I kind of can't believe that some of you guys are residents.

So what's your cut-off then? Clearly a 50% chance isn't good enough. 60%? 80%? Or do we only force treatment if there is an absolute, 100% guarantee that the treatment will be life-saving?

This is pretty sad. The parents had a good chance to save that little boy's life, and they opted not to. They CHOSE not to save their son's life. I am sure that they thought that they were doing right by him, but....I'm sorry, but most patients don't truly understand the risks/benefits of the treatments that they are rejecting. And when it's their own life, that's one thing. But when they are betting on the life of a 6 year old, it does make me angry.

Are you dense? It's not my cut-off. It's the parents'. Do you really think that you care more about this kid than his own parents? If they have informed consent, they should be allowed to decide what happens to their kid. They are the ones that have to live with the consequences of their decision, not you and they presumably have their child's best interest at heart.

 

[SurfingDoctor]

Are you dense?

If they have informed consent, they should be allowed to decide what happens to their kid. They are the ones that have to live with the consequences of their decision

We have already covered this. If those decisions intentionally lead to harm to the child, that is child abuse. It is a CRIME (whether you agree or not). Please stop trying to impart your 2 months of doctoring experience into something you clearly don't understand (which is clear from your statement since you seem to ignore the child has to live, or in this case die, from the consequences, not just the parents). Your comments are tiresome and demonstrate a lack of maturity.

 

[tiedyeddog]

Yes, it is in a different article about the story that stated it was medulloblastoma. This discussion is separate of what is going on now, it is a discussion of the parents not taking the appropriate actions to begin with. Of course if someone has a terminal prognosis, which I would not agree that 50% survival signifies, than palliative care should be offered. This is not about that.

And treatment for something with a 70% survival should not be undertaken because of side effects of the treatment? Why treat anything? Sepsis survival is 50 to 70%. Should we just stop because the treatment for sepsis has side effects? I guess with any diagnosis, no matter the chance of survival, the other option should be palliative care? Antibiotics can cause anaphylaxis so for strep throat we should offer Penicillin or Pentobarbital if the parents want.

Broadly speaking the prognosis of medulloblastoma is that 75% will survive into adulthood. However, there are plenty of variables that play into prognosis. Which of the four subgroups does this kid have? Is it already disseminated? Did he even have a resection?! Who knows what his true prognosis really is unless it was highlighted in a court document. I will say I didn't really look too hard if this was stated somewhere.

 

[Ceke2002]

Court ruling from May 20 2016. I believe at this stage the parents had agreed, after some persuasion, to chemotherapy treatment only. The judge upheld their request not to force their child to also be given radiation therapy treatment. The case returned to court last week when both sides agreed that the chemotherapy alone was not going to continue to be of any benefit. That is when the ruling to allow palliative care only was made I believe (those documents aren't yet publicly available as far as I can see).

http://www.familycourt.wa.gov.au/_files/Publications/Judgment-CAHS-Kiszko-Strachan-20-May-2016.pdf

 

[Mr Roboto]

Are you dense? It's not my cut-off. It's the parents'. Do you really think that you care more about this kid than his own parents? If they have informed consent, they should be allowed to decide what happens to their kid. They are the ones that have to live with the consequences of their decision, not you and they presumably have their child's best interest at heart.

Unfortunately their child won't live with the consequences of their decision. He'll die from them.

 

[Wordead]

We have already covered this. If those consequences lead to harm to the child, that is child abuse. It is a CRIME (whether you agree or not). Please stop trying to impart your 2 months of doctoring experience into something you clearly don't understand (which is clear from your statement since you seem to ignore the child has to live, or in this case die, from the consequences, not just the parents). Your comments are tiresome and demonstrate a lack of maturity.

Unfortunately their child won't live with the consequences of their decision. He'll die from them.

You guys have some impressive crystal balls. This is not an apples to apples argument with vaccines in which adverse effects are extremely rare. Adverse effects from radiation and chemo are going to be present the vast majority of the time. SurfingDoctor, you're making a blanket statement which is true but does not apply in this case. Where do you place consequences from chemo/rads in harm to the child? Why is that not child abuse? When this kid has a second primary as an adult or cant swallow and has painful mucositis who has to live with the consequences there? Even if there is a 75% cure rate, that's a quarter of kids who will die in ADDITION to the suffering from your treatment.

 

[Neuronix]

We don't really "cure" cancer with the exception of things like atra for apml. It's really just a delay and what you're aiming for is disease free progression. But the sequela from treatment is significant and he's already experienced quite a bit. You're acting like toxic medication and significant radiation to the cranium and spinal cord will make this kid into a normal kid again. They're not using some magic formula from their giant cancer doctor brains to get those survival rate numbers btw. It's from a kaplan meier curve that they got from a study which basically tracks how many people died over a period of time.

I am a cancer specialist and I radiate children. I see them in follow-up. I don't really claim to understand this particular child's condition. Speaking in generalities:

We cure cancer all the time. The odds of a medulloblastoma coming back after 5 years without recurrence is quite slim.

The side effects of treatment are being overstated. A reasonable estimate in a child this age with the dose necessary is a loss of maybe 15 IQ points. That does not make you disabled. There are other real side effects--loss of several inches of adult height, sterility, decreased endocrine function (manageable), early development of cataracts (treated the same way), possible decreased hearing sometimes requiring hearing aids, and increased risk of a second cancer later in life. It's not like the survivors can't lead independent adult lives.

Small children (age <3) do much worse with radiation and we are loathe to radiate them as a result. In those children we have a real ethical discussion and often use more chemo while delaying or omitting radiation (though chemo alone is not as good at curing).

This story is just horrible. I would absolutely get the courts involved for a typical 6 year old with medulloblastoma whose parents refused treatment.

 

[Neuronix]

When this kid has a second primary as an adult or cant swallow and has painful mucositis who has to live with the consequences there?

Mucositis could happen temporarily. It's rarely so severe that it would necessitate feeding tube with the required regimen.

 

[smq123]

Are you dense? It's not my cut-off. It's the parents'. Do you really think that you care more about this kid than his own parents? If they have informed consent, they should be allowed to decide what happens to their kid. They are the ones that have to live with the consequences of their decision, not you and they presumably have their child's best interest at heart.

1. Sadly, I no longer assume that parents have their child's best interest at heart. I'm not even a pediatrician, but I've seen enough instances where that is not the case that I'm not naïve enough to assume that any longer.

2. What concerns me more about your post is the underlying distrust of the medical profession, a profession that you are now a part of. Do you genuinely believe that this child's oncologists and surgeons would recommend a treatment without knowing, or caring, what the side effects were? They probably do know, but recommend the treatments anyway because that's the child's best shot at a cure.

I know that you may be early on in your training, but there will come a time when you recommend a treatment or a procedure that you know, in your heart of hearts, may cause your patient some adverse effects. But you will recommend it anyway, because you know, in your heart of hearts, that it's the best option for that patient. Now, if your patient is an adult and declines it, that's their right, and they have to live (or die) with the consequences. Children shouldn't be expected to make that choice, and the law supports that.

Sent from my Nexus 5X using SDN mobile

 

[smq123]

When this kid has a second primary as an adult or cant swallow and has painful mucositis who has to live with the consequences there? Even if there is a 75% cure rate, that's a quarter of kids who will die in ADDITION to the suffering from your treatment.

You also have an impressive crystal ball. Sure, all of that might happen...or, it might not. He may make it through treatment and live a reasonably normal adult life. You've never had patients who had cancer as children, but are healthy adults now? You act like such beings don't exist.

The law, and standard of care, dictate that we offer treatments that will give the child a reasonable shot at a cure. Declining a standard treatment that has good potential to cure is both NOT standard of care, and illegal.

Sent from my Nexus 5X using SDN mobile

 

[Wordead]

Mucositis could happen temporarily. It's rarely so severe that it would necessitate feeding tube with the required regimen.

Right I was more suggesting that the child does not understand why he has terrible burning pain in his mouth and cant eat. He has to suffer from being unable to move his neck due to fibrosis (which is often permanent). The overall point is that there are a ton of potential side effects to consider and that it's not so cut and dried that parents should be forced to have their kids undergo these regimens.

If one of my head/neck cancer patients (which arent going to be kids obviously) said they didn't want to go through surgery and chemorads I would 100% support them. Our treatments offer them the best chance at a cure - that's true. But the quality of life is often dubious at best. The effects you mentioned - loss of vision, IQ, sterility? Good god. I would elect for no treatment if that were me. Your threshold of "independent adult" seems like a rather low bar. I don't want a life like that for myself or my children.

 

[Ceke2002]

Noteable points from the link I posted above:

(Ruling Judge's words - this is the ruling made before the most recent ruling regarding palliative care)

• Oshin presented at Princess Margaret Hospital (“PMH”) on 1 December 2015, where testing revealed that he had medulloblastoma, a type of brain tumour which occurs in children.
• 
  
• On 3 December 2015, Oshin underwent surgery to remove the tumour. The operation was performed with the consent of Oshin’s parents. Thereafter, disagreements arose between the medical staff at PMH and the parents concerning ongoing treatment. The treating doctors wanted to administer radiotherapy and then chemotherapy, in accordance with an established protocol. The protocol indicated that treatment should start within 28 to 36 days after the surgery.
• 
  
• Oshin’s parents opposed the proposed treatment. Although their views have fluctuated, their primary preference was to pursue alternative therapies involving herbs, iridology and massage (noting that the mother has a Diploma in Bodyworks and an Advanced Diploma in Diet and Nutrition, and has studied naturopathy). The parents’ stated views about the effectiveness of these therapies have also varied, but as recently as 29 March 2016, they told a doctor at PMH that their therapies had a 90% chance of curing Oshin.
• 
  
• The commencement of conventional treatment for Oshin was delayed as the hospital attempted to reach an agreement with the parents.
• 
  
• While discussions were ongoing, testing undertaken on 16 February 2016 and 17 March 2016 revealed that the disease was progressing, and that abnormal cells consistent with medulloblastoma were present in Oshin’s cerebrospinal fluid. Although this was a very worrying development, some solace was taken from the fact that the disease was progressing in a “linear” rather than an “explosive” manner. The doctors considered that the results of the testing were such that a palliative approach could not be supported. They therefore decided to apply to this court for authorisation to follow their preferred treatment program, since the alternative for Oshin was certain death in a matter of months.
• 
  
• The doctors estimated at the time that the recommended treatment would give Oshin a 50–60% prospect of being alive in five years. Lest there be any misunderstanding, if Oshin were to be alive in five years’ time, he would be regarded as having been “cured”, and would then have a good chance of a long life.
• 
  
• These proceedings were commenced by PMH’s representative on 18 March 2016. On 24 March 2016, over the parents’ strong objections, I made interim orders authorising the commencement of treatment. I did so having been told by the doctors that the tumour was “on the cusp of a massive and irreversible progression, suggesting that it is critical that the boy commences treatment with curative intent urgently
• 
  
• The practical effect of my orders was that Oshin would commence only chemotherapy. I did not address the issue of whether he would have radiotherapy, as it was not practicable for that part of the treatment to commence due to the delay that had occurred to that point. The parents were given liberty to bring the matter back to court once they had obtained evidence they hoped to find to persuade me that the proposed treatment was not in Oshin’s best interests. They have since obtained advice from an expert in the United Kingdom, but I have been informed it is no different to other opinion already in evidence.
• 
  
• (Oshin's response to treatment already ordered)
• 
  
• Oshin has now undergone two courses of chemotherapy. The effects were measured by a lumbar puncture and MRI conducted last Thursday, 12 May 2016. The results demonstrate that there has been “an unequivocal radiologic response”, in that there has been a significant reduction in the size of cancerous nodules in Oshin’s brain. However, there has only been a very minor response to the significant disease evident in the cerebellar folia (at the back of the brain, from where the disease originated). The results also reveal “degenerate small cells” in the cerebrospinal fluid which could be degenerate cancer cells.
• 
  
• Dr G, who is the head of the relevant department at PMH, is of the opinion that while the results of the chemotherapy are “pleasing”, the level of response is such that further chemotherapy alone will not save Oshin’s life, and that a high-level dose of radiotherapy (36 Gray, with a “boost” of around 54 Gray to the primary site), in conjunction with chemotherapy, is required if Oshin is to have a realistic chance of survival. Dr G is now of the opinion that Oshin’s chances of survival for five years have reduced to around 30–40% if that treatment is undertaken. The probabilities for Oshin are difficult to gauge, since the delay in the commencement of treatment places him well outside the range of the sample groups used to make predictions. However, what can be said is that the delay means his chances of survival are worse than for other children with a similar disease, and that he will be likely to die within months unless treated.
• 
  
• Oshin’s parents continued to resist chemotherapy right up until the hearing on Monday of this week. Their opposition was so strong that they erected a “Forced Chemo” sign above Oshin’s hospital bed during his first round of chemotherapy, and sometimes refused to assist nursing staff in caring for and comforting Oshin at that time. The sign was not erected again during the second round of treatment, and Oshin’s parents have since been cooperative in assisting the staff and tending to Oshin’s needs. They have also conscientiously complied with their obligations under the court order, notwithstanding the great burden it placed upon them.
• 
  
• Shortly prior to the hearing on Monday, a supplementary report from Professor Kellie became available, recommending additional chemotherapy, but opining that the parents’ opposition to radiotherapy should be respected. Although the parents initially maintained during the hearing that their primary wish was for Oshin not to have either chemotherapy or radiotherapy, it was apparent from the submissions made on their behalf that they were attracted to the recommendation of the independent expert. Ultimately, the parents abandoned their primary position and said that they now wished Oshin to have the chemotherapy treatment recommended by Professor Kellie.

(a full detailing of both the first and second report made my Professor Kellie regarding Oshin's treatment options and potential outcomes is included in the link in my comment above - it is too length to post here in full).

 

[SurfingDoctor]

I will second the posts of @Neuronix and @smq123. I do pediatric critical care. There is little that we do/for children who are critically ill (intubations, central lines, ECMO, etc.) that doesn't have harm associated with it. But we do it to help them live to see another day. A day they get to spend with their parents, their siblings. A day where they hopefully get better and get to do all the other things children get to enjoy (birthday cake, laugh at a movie, playing tag in the park). Another day where they can hopefully grow from the awful experiences and challenges they faced and go to make this world a better place. And if that day never comes because we exhausted all the resources we have, we make sure they spend the remaining time as comfortable as possible. This may seem melodramatic, but in reality, it is not. If you don't understand that, I suppose you never will...

 

[smq123]

If one of my head/neck cancer patients (which arent going to be kids obviously) said they didn't want to go through surgery and chemorads I would 100% support them. Our treatments offer them the best chance at a cure - that's true. But the quality of life is often dubious at best. The effects you mentioned - loss of vision, IQ, sterility? Good god. I would elect for no treatment if that were me. Your threshold of "independent adult" seems like a rather low bar. I don't want a life like that for myself or my children.

But this is the point that many of you are missing. The law and priorities in the care of children is often VERY different from the laws and priorities in the care of adults. Your adult patients are free to reject surgery and chemorads, and that is fine. Parents of your pediatric patients are not free to reject surgery and chemorads for their children if there is a good chance that their child will be cured - this is the LAW. And this is what the STANDARD OF CARE dictates. You would be hard pressed to defend your decision to "100% support" a parent who rejected lifesaving treatment for their child in front of a peer review board or (worse) an ethics committee.

And again, you are free to elect for no treatment if it were you - because, again, you're an adult. But you're not free to make that decision for your child. Just like you shouldn't assume that your child will want to be a doctor like you, you shouldn't assume that your child would agree that being dead is better than being sterile or getting cataracts.

(And this is setting aside my personal discomfort that you'd rather let your child die than risk having your child live with poor vision and sterile genitals. But that is a different discussion for a different day, because I really don't want to go down that particular slippery slope right now.)

 

[Neuronix]

He has to suffer from being unable to move his neck due to fibrosis (which is often permanent).

The doses required for treatment of medulloblastoma don't cause this side effect.

Also children less than 12 or so don't sit around and brood and become moody over their side effects. Teens and adults do that.

Good god. I would elect for no treatment if that were me.

Versus certain death? Ok.

The protocol indicated that treatment should start within 28 to 36 days after the surgery.

This is standard of care for medulloblastoma (to start adjuvant treatment within 1 month). Standard risk (80-90% cure with appropriate treatment) or high risk (50-60% cure), the 50+ years of experience with medulloblastoma dictates that just because the surgeon removes all visible disease (hopefully), there are still tumor cells remaining in the CNS. Those seeds of cancer will almost always regrow unless they are destroyed by chemoradiotherapy. When the cancer regrows, it becomes harder, and sometimes impossible, to cure.

Most children have reasonable parents and are treated appropriately in modern times.

 

[Psai]

1. Sadly, I no longer assume that parents have their child's best interest at heart. I'm not even a pediatrician, but I've seen enough instances where that is not the case that I'm not naïve enough to assume that any longer.

2. What concerns me more about your post is the underlying distrust of the medical profession, a profession that you are now a part of. Do you genuinely believe that this child's oncologists and surgeons would recommend a treatment without knowing, or caring, what the side effects were? They probably do know, but recommend the treatments anyway because that's the child's best shot at a cure.

I know that you may be early on in your training, but there will come a time when you recommend a treatment or a procedure that you know, in your heart of hearts, may cause your patient some adverse effects. But you will recommend it anyway, because you know, in your heart of hearts, that it's the best option for that patient. Now, if your patient is an adult and declines it, that's their right, and they have to live (or die) with the consequences. Children shouldn't be expected to make that choice, and the law supports that.

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Easily. I have seen many cases where treatment is futile and I see people reluctant to tell the family the fact that the patient has no chance of meaningful recovery when everyone in the hospital knows that this person is basically dead. Physicians doing unnecessary tests and treatments is also nothing new and there have been big news stories lately with physicians doing this. http://www.cnn.com/2015/07/10/us/michigan-cancer-doctor-sentenced/ http://www.tribuneindia.com/news/wo...led-for-3million-healthcare-fraud/224559.html http://www.cnn.com/2016/02/05/health/california-overdose-doctor-murder-sentencing/ I do things that can cause adverse effects all the time. I try as hard as I can to make sure that the informed consent actually involves the patient or family understanding the consequences of our decisions.

The doses required for treatment of medulloblastoma don't cause this side effect.

Also children less than 12 or so don't sit around and brood and become moody over their side effects. Teens and adults do that.

Versus certain death? Ok.

This is standard of care for medulloblastoma (to start adjuvant treatment within 1 month). Standard risk (80-90% cure with appropriate treatment) or high risk (50-60% cure), the 50+ years of experience with medulloblastoma dictates that just because the surgeon removes all visible disease (hopefully), there are still tumor cells remaining in the CNS. Those seeds of cancer will almost always regrow unless they are destroyed by chemoradiotherapy. When the cancer regrows, it becomes harder, and sometimes impossible, to cure.

Most children have reasonable parents and are treated appropriately in modern times.

I would definitely choose death over living like that and I would not want my child to suffer through a prolonged treatment with a poor quality of life. Then to have to take care of my suffering child because someone like you forced me to do so through legal means when I wanted to let them go peacefully? Sounds like hell.

I think one of the biggest pathologies in modern medicine is this obsession with prolonging life for its own sake without considering the quality of life that we are offering. Everyone dies. There comes a point where it makes no sense to continue pouring limited resources for uncertain gain. Our insane spending on healthcare is tied directly to this kind of futile end of life care and many families throughout the country are suffering financially from the choices we make for some of our patients. I agree that in this case, it sounds like the family is in the wrong because they wanted to forego treatment without understanding the implications and made a poor decision to pursue naturopathic treatments and you certainly know more about the diagnosis and treatment of cancer than I do.

 

[Neuronix]

What I described to you is not suffering. If you had a child a half foot shorter than you with some difficulty in school and who has to take some additional medications each day, would you wish your child to die instead?

 

[Ceke2002]

Link to final court decision report

http://www.familycourt.wa.gov.au/_files/Publications/Judgment-CAHS-Kiszko-Strachan-01-Sept-2016.pdf

 

[SurfingDoctor]

If one of my head/neck cancer patients (which arent going to be kids obviously) said they didn't want to go through surgery and chemorads I would 100% support them. Our treatments offer them the best chance at a cure - that's true. But the quality of life is often dubious at best. The effects you mentioned - loss of vision, IQ, sterility? Good god. I would elect for no treatment if that were me. Your threshold of "independent adult" seems like a rather low bar. I don't want a life like that for myself or my children.

I would definitely choose death over living like that and I would not want my child to suffer through a prolonged treatment with a poor quality of life. Then to have to take care of my suffering child because someone like you forced me to do so through legal means when I wanted to let them go peacefully? Sounds like hell.

I think one of the biggest pathologies in modern medicine is this obsession with prolonging life for its own sake without considering the quality of life that we are offering. Everyone dies. There comes a point where it makes no sense to continue pouring limited resources for uncertain gain. Our insane spending on healthcare is tied directly to this kind of futile end of life care and many families throughout the country are suffering financially from the choices we make for some of our patients. I agree that in this case, it sounds like the family is in the wrong because they wanted to forego treatment without understanding the implications and made a poor decision to pursue naturopathic treatments and you certainly know more about the diagnosis and treatment of cancer than I do.

On the point of "quality of life", it has been well demonstrated in multiple studies that physicians perception of quality of life differ from those of patients and caregivers. Also, parental assessment of quality of life does not necessarily have concordance with a child's own perception of their quality of life. Therefore, one should never deny treatment based on how they assume the child's quality of life will be.

http://www.ncbi.nlm.nih.gov/pubmed/24816425
http://www.ncbi.nlm.nih.gov/pubmed/22392522

This is combined with reduced late mortality in childhood cancer, death versus uncertainty seems like a poor trade-off:
http://www.ncbi.nlm.nih.gov/pubmed/26761625

As far is futility, that is in the eye of the beholder. However, I don't know a single practicing pediatrician or pediatric subspecialist who views the treatment of pediatric cancer as "futile". Also the idea of stopping care for a child who has a low chance of survival because it will reduce healthcare expenditures is terribly misguided and factually wrong.

http://www.ncbi.nlm.nih.gov/pubmed/8648530
http://www.ncbi.nlm.nih.gov/pubmed/11207181
(From the article for those who don't want to read it: "Cost containment initiatives focusing on futility in the paediatric intensive care unit setting are unlikely to be successful as only relatively small amounts of resources were used in providing futile care.")

 

[smq123]

I think one of the biggest pathologies in modern medicine is this obsession with prolonging life for its own sake without considering the quality of life that we are offering. Everyone dies. There comes a point where it makes no sense to continue pouring limited resources for uncertain gain.

Dude.

You have got to stop conflating your adult inpatient experiences with pediatric patients.

Peds is different. Pediatricians have different priorities....as they should.

Sure, we've all seen the families that refuse to take Grandma off of life support, even though her kidneys have failed, she is severely demented (and has been for the last 5 years), can't recognize her family, still thinks that Gerald Ford is the president, and can't control her bowels. And yes, I think it is valid to question how useful it is to keep expending a lot of resources on her life-prolonging care.

Expecting a family to allow their six year old to receive treatment that has a 50-90% chance of curing him is hardly the same thing. If you really can't stop conflating the two, that's concerning.

 

[smq123]

I would definitely choose death over living like that and I would not want my child to suffer through a prolonged treatment with a poor quality of life.

Being short and having cataracts is a fate worse than death?

Either you have a poor imagination or you are devastatingly handsome and vain. (Or both.)

 

[patriot6]

Psai... smh... I'm embarrassed for you by the downtalk to the medical student contributing here in the medical student forum. You're 3 months removed from being a medical student yourself. C'mon bruh.

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[tatsuchi]

In this topic: physicians who don't actively manage kids trying to apply their adult standards of care to pediatrics.

There is a reason you adult folks gave up pediatrics, and one of those aspects are clearly illustrated here.

That and people who obviously have never had children or been primary caregivers for children.

 

[BidingMyTime]

Are you dense? It's not my cut-off. It's the parents'. Do you really think that you care more about this kid than his own parents?

Surely you have seen enough horror stories in the news to know that yes, there are parents who don't care at all about their children?

I'm a parent, I can appreciate a parent who doesn't want their child to suffer, I can NOT appreciate how a parent would choose certain death for their child over a limited amount of suffering. Obviously there is a certain amount of gray area in medicine, and obviously we are all commenting on this case 2nd hand and don't know the exact details.....BUT, in general and assuming no extraordinary circumstances, it seems clear to me that a parent who would refuse a proven medical treatment that has a 60% curative rate is completely wrong. Legally speaking, parents are guardians....which means they have (and should have) the right to make the tricky decisions in the "gray" areas, but I don't think a 60% curative rate is a gray area. And the law is clear about the limitations of guardians and the rights of those under guardianship.