Should a parent be permitted to deny life-saving cancer treatment for their child? What about if the child is severely disabled?

In My Humble Opinion
1

A court in Australia has denied parents of a severely disabled teenager the right to withold treatment of their child. The child has multiple disabilities, and the parents were hoping to have their child at home to undergo palliatve care, but a judge has ordered that treatment for leukaemia must proceed.

Link to story on newsite in Australia.

Thoughts or opinions?

Me, I’m totally against the parents wishes being overturned in THIS case purely because the child has a shitty quality of life as it stands, and the treatment regimen will be brutal and cruel, with no guarantees of success (whatever that is). Added to which, the family live in a regional area without close access to specialist centres.

This is just wrong.

2

I’m gonna begrudgingly agree with you. With only your information, it seems a cruel thing.

As someone who’s fought her whole life to stay alive with my own minor difficulties added to it, (I was never intellectually disabled), I would want the treatment for myself.

We need a cite. Can you get one?

ETA…I see your link now.

3

What a terrible story. The judge must feel like Solomon.

The good news is they expect a good outcome from the treatment.

4

“Kid has cancer. Has been through years of miserable treatment. Kid wants to stop” is a concept that has been used on TV numerous times (and I assume is based on real life).

I’m with the parents on this one. Assuming the kid is not mentally “there” enough to cherish living, or even if he IS mentally aware and is just sick of the misery, palliative care is a very reasonable outcome. And skimming through the linked article, it seems like the treatment would basically be torture for the poor girl.

I do feel for the judge, though. There’s a certain duty to “protect” the children. I just feel that the treatment, with the intention of “survival”, does not qualify as protecting.

5

Based on the story as written, it seems like a very cruel decision. The teen doesn’t seem to want the treatment either. What law is the judge relying on that says he must push for survival, even if the patient doesn’t want that?

6

Looks like another Terry Schiavo type test case.

7

Well, if this is true, then the judge made the right decision because the alternative, if I understand the information in the link correctly, is certain death.

8

I think the question is intended to be whether the parents are using not treating the child as a form of slow euthanasia, or whether they’re genuinely concerned that further treatment falls in the category of cruel and pointless, with an extra side of the child being severely disabled on top.

It’s a hard call; the parents are saying they view it as cruel and just want to let their child die, but the doctors are saying 90% survival rate (whatever that means). Which is one of those questions about quality of life- is her quality of life worth saving with all this invasive cancer treatment?

I’m just glad I don’t have to make that decision.

9

From the linked article: this is a tough one. The treatment apparently stands a good chance of success. The child apparently is certain to die without it.

But – the treatment, going by the article, amounts to torturing for two years a child incapable of understanding the reason for the torture. That’s utterly awful. And it doesn’t sound as if they’d be in great shape afterwards physically, might well be in much worse shape mentally, and might not ever be able to really understand why that was done to them.

I am very glad not to be the mother, or the judge, or the child. I’m inclined to come down on the mother’s side.

10

Your right, it’s totally horrible from every possible perspective. Life is a huge factor, but quality of life is a huge factor as well.

11

Having been a parent of a special needs child, I knew her best and always did what I thought was in her best interest for 18 years. It’s simply heart wrenching to make that kind of decision but as a parent you think what is best for my child. 2 years of hell and what is the quality of life after that?

The poor kid in the article can’t even eat and has a tube through her nose to her stomach. My baby had that for about 2 weeks after a 4 week stay in the NICU.

I defer to the parents decision.

12

New South Wales seems to have specific legislation addressing situations where parents refuse to consent to procedures necessary to preserve minor children’s (<=15yo) lives.

http://www5.austlii.edu.au/au/legis/nsw/consol_act/caypapa1998442/s174.html

(1) A medical practitioner may carry out medical treatment on a child or young person without the consent of–

(a) the child or young person, or

(b) a parent of the child or young person,

if the medical practitioner is of the opinion that it is necessary, as a matter of urgency, to carry out the treatment on the child or young person in order to save his or her life or to prevent serious damage to his or her health.

Note that the article from OP mentions the lawsuit was actually brought by the hospital.

The government handbook on consent has an example that gives some insight as to the law,

Sarah is a 17-year-old patient who has Hodgkin’s disease and is about to start her third round of chemotherapy following a relapse of the disease. Sarah and her family are followers of the Jehovah’s Witness faith and object to having a blood or platelet transfusion. Sarah and her parents have provided a written, signed document to her Medical Practitioner refusing blood or platelet transfusions. Sarah’s Medical Practitioner has over 20 years’ experience with patients in similar situations and has advised that Sarah will die without chemotherapy treatment. Sarah has a 70% chance of being cured of the disease with chemotherapy treatment, but this treatment will necessitate a blood transfusion, without which Sarah is likely to die from anaemia.
Sarah and her parents seek to have the chemotherapy treatment but refuse to consent to a blood or blood product transfusion. Sarah has been assessed by expert Medical Practitioners as a Mature Minor. She is fully supported by her parents in her decision.
As Sarah is a minor, her refusal of treatment may potentially be overridden by her parents or the court, notwithstanding the fact she is both intelligent and mature. However, before approaching the court, the Medical Practitioner should consider following the procedures set out in this Consent Manual and:
(a) consider any alternative appropriate treatment for which consent would be forthcoming
(b) consider obtaining a second opinion from a suitably qualified Medical Practitioner to confirm the prognosis and treatment plan
(c) attempt to reach agreement with Sarah and her family by repeat discussions and counselling
(d) if no agreement can be reached, consider whether the refusal of treatment means that there are reasonable grounds to suspect that Sarah is ‘at risk of significant harm’ to the degree that a suspected risk of significant harm report must be made to the Department of Communities and Justice pursuant to the mandatory reporting requirement under section 27, Children and Young Persons (Care and Protection) Act 1998.
Finally, the Medical Practitioner should escalate the issue within the Health Service and urgently seek advice from Ministry of Health Legal Branch to obtain an appropriate court order for guidance on a treatment plan. In this situation, the court may invoke its’ parens patriae jurisdiction to make an order based on the best interests of Sarah.
In making its decision the court is likely to take into account the nature of the disease, the nature of the treatment, the reasons for the treatment, the desirability of the treatment, the risks to Sarah’s health with and without the proposed blood transfusions, the faith and views of Sarah and her parents, and the views of the attending Medical Practitioners.

So you see even if the patient was older and more competent and had religious objections, with full support of the parents and only a 70% success rate, the court can literally decide to force the treatment in the name of the patient’s best interests.

In the present case we seem to have a higher success rate and furthermore statutory deference to the doctors, and statutory criteria of life and limb rather than quality of life.

~Max

13

That seems to me to be a whole lot clearer case. Sarah will presumably be in good shape after the treatment, and won’t have to undergo two years of torture without be able to understand what’s going on – it doesn’t even read to me that they’re objecting to the chemo part, only the blood transfusion part, which is only mildly uncomfortable. What does make it a bit blurry for me is that if she were a year older, she’d be an adult legally entitled to refuse medical treatment – and that does seem to be one of the things the court’s considering.

If they were requiring a blood transfusion for a two year old with an otherwise fairly good life expectancy, or diabetes treatment for a two-year-old whose parents believe in prayer-only, I’d consider those also to be much easier cases. But again – the OP case is two years of torture for a child who will at best still be in terrible shape afterwards, and who can’t understand the reason for the torture so is pretty much guaranteed to be in even worse mental shape afterwards as well as during.

14

This would have to be the worst decision a parent could ever make. Fuck Terry Schiavo’s whack job parents who didn’t care how horribly their daughter would suffer, this is about a real consideration of the quality of life for a child. The parents are the best advocate for their child in such cases as long as they are talking about the actual best interests of the child. I’m sure there will be times when courts have to decide, and the opinions of medical professionals and parents should be considered, but not the opinions of a medical hierarchy constrained by liability issues and a bureaucratic approach to medicine.

15

Cancer sucks, but cancer treatments also suck. Treatments suck so much that many adults of sound mind, in charge of their own decisions, make the rational decision to forgo treatment.

That’s a hard decision to make on one’s own behalf, and it must be even harder to have to make it for someone else. But someone has to make the decision, and the parents are better placed to decide than the courts.