Is it ethical to stunt the growth of a severely disabled child?
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Medical ethics
Is it ethical to stunt the growth of a severely disabled child?
Discuss ethical issues with the Medical Ethics department of the BMA and the Institute of Medical Ethics. Please note, the views posted here do not necessarily represent the views of the BMA or the IME
Has anyone heard of a controversial treatment in the US, where doctors use medical interventions to stunt the growth of severely disabled children (with parents' consent)? The interventions are being
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Is it ethical to stunt the growth of a severely disabled child?
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Is it ethical to stunt the growth of a severely disabled child?
posted at 22/3/2012 12:28 PM GMT
on bmj.com
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*Moderator*
Posts: 1497
First: 7/4/2011 Last: 19/6/2013 |
Has anyone heard of a controversial treatment in the US, where doctors use medical interventions to stunt the growth of severely disabled children (with parents' consent)? The interventions are being used to keep children permanently small, and stop the start of puberty. A patient called Ashley was given high doses of estrogen, a hysterectomy (to stop menstruation) and had her nascent breast buds removed to stop the growth of breasts. Ashley's condition leaves her unable to talk or walk and has the cognitive ability of a small child. Her parents claim that by using these interventions, it will give her the best life possible, and reduce discomfort, despite the challenges of her condition. Should this treatment be available for all parents who want it? Where are the lines of consent drawn? Are there any ethical implications for these interventions?
http://www.guardian.co.uk/society/2012/mar/15/ashley-treatment-email-exchange |
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Re: Is it ethical to stunt the growth of a severely disabled child?
posted at 22/3/2012 4:12 PM GMT
on bmj.com
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Posts: 1302
First: 9/12/2011 Last: 12/6/2013 |
I don't know how to comment on this one, except to say, it seems that the more we supposedly learn about medicine, the less we seem to know! For a supposedly technological world, we always seem to become trapped in Philosophical dilemmas. Perhaps more of the famous Greek Philosophy Odysseus is so good at will pull us from this Hole! DuaneF |
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Re: Is it ethical to stunt the growth of a severely disabled child?
posted at 22/3/2012 5:31 PM GMT
on bmj.com
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Posts: 2137
First: 12/3/2010 Last: 19/6/2013 |
why so difficult frggatt? if the child will never develope mentally beyond "a young child" why inflict adult size and sexual development upon them? having been concerned with th care of sevral ventilator dependant pts their size and weight can be a real handling problem once they are no longer children. John |
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Re: Is it ethical to stunt the growth of a severely disabled child?
posted at 23/3/2012 7:02 AM GMT
on bmj.com
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Posts: 1360
First: 25/1/2009 Last: 14/6/2013 |
Until the introduction of PEG feeding with fundoplications many children with severe neuro-disability did not grow well as it was simply not possible to get the required calorie intake into them safely, and they frequently had chest infections from aspiration of their feeds, which contributed to shortened life spans. Since the more widespread use of Nissens Fundoplications and PEGs, and the improvements in home oxygen and treatment for other co-morbidities more of these children are surviving to an age where their growth is a problem. I've seen many parents of disabled children in tears in clinic asking how they will cope at the onset of menstruation and expressing their concerns that their child is getting too heavy for them to continue caring for them easily in the family home. This is also a problem with children with learning dfficulties and severe behaviour problems who as they reach their teens their parents can no longer prevent them injuring their younger siblings. If it can be proven that there are no long term effects of such treatments, and that quality of life would be unaffected then it may well be a possibilty treatment that would enable children to stay with their families for longer time before requiring full time residential care away from their parents and siblings. My sister only lived until 12 years (died in 1992) and at that time she was light enough that my mum could lift her to transfer her from bed to wheelchair due to failure to thrive and difficulties with feeding. I cannot imagine how we would have coped had she been the size of a normal 12 year old. |
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Re: Is it ethical to stunt the growth of a severely disabled child?
posted at 23/3/2012 11:17 AM GMT
on bmj.com
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Posts: 1
First: 23/3/2012 Last: 23/3/2012 |
I remember this coming up in a lecture recently, and we had a huge discussion on the ethics of it afterwards. It shocked a lot of us to hear that it happened, but I know after thinking about it for a while, it's easy to see why parents elect to do this. As already mentioned, it certainly makes handling easier, an important aspect to consider when dealing with severely disabled patients. Also as John D said, why inflict puberty on these individuals, where their mental state may never develop beyond that of a child. But then again, it can be difficult to assess the quality of life of these patients following such a procedure. I agree with DrS, if there is proof out there, why shouldn't it be offered? |
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Re: Is it ethical to stunt the growth of a severely disabled child?
posted at 23/3/2012 11:29 AM GMT
on bmj.com
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Posts: 1
First: 23/3/2012 Last: 23/3/2012 |
Seen from the childs perspective it might assure her/him of a better care in the long run since caregivers tend to naturally nurse individuals which they consider as children better than grown ups. Seen from a general ethical perspective it seems outrageous. /Dr Martin
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Re: Is it ethical to stunt the growth of a severely disabled child?
posted at 23/3/2012 12:37 PM GMT
on bmj.com
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Posts: 7
First: 23/3/2012 Last: 13/9/2012 |
I am not a doctor or a medical student, however I am currently in the process of applying to graduate medicine courses. My view therefore comes from more of a lay person's perspective. I think as has already been mentioned the key issues with this case are autonomy (informed consent) and beneficence. My understanding is that if a child has a medical problem but no contextual capacity, then an action plan must be developed with the parents that demonstrates how they will explain their child's condition to them as they grow. In this case however, it is clear this is not possible, and that is why I am quite uneasy with the idea of performing a significant irreversible procedure such as a hysterectomy on a young child. Ultimately, if I was the clinician in this case, I would like to understand better if there were any previous evidence base detailing the physical and psychological distress of the process of puberty on disabled children. If the child has no chance of mental growth, I think it is really a question of how the quality of life can be improved. Therefore if the harm caused by the medical interventions is less than the long term and cyclical distress caused by the condition, you could reduce the decision to simple utilitarian calculus - that to stunt the growth is the lesser evil. I appreciate the comments made with regards to the dilemma of our increasing scientific knowledge and ethical issues, however with regards this specific case, would greater adoption of prenatal genetic screening reduce cases like this in the future for disabilities of a genetic cause? Also, I would be interested in understanding what the law in the UK says about a specific case like this and whether the Gillick/Fraser guidelines apply? |
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Re: Is it ethical to stunt the growth of a severely disabled child?
posted at 23/3/2012 1:59 PM GMT
on bmj.com
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Posts: 2137
First: 12/3/2010 Last: 19/6/2013 |
Several contributors above have wondered about the effects of orchid/oophorectomy on a pre-pubertal child. This paper: "Long-term Consequences of castration in men: Lessons from the Skoptzy and the Eunuchs of the Chinese and Ottoman Courts" http://jcem.endojournals.org/content/84/12/4324.full found over 50 such studies, and found mention of pituitary enlargement, skeletal changes , inc. spinal kyphosis, gynaecomastia, and absence of the prostate, but they could find no evidence that eunuchs lived a shorter life than entire men. Nor could they give any opinion on the effect on women of early oophorectomy. Several studies have examined the effect on life span of adult oophorectomy, and shown that the women have a shorter expectation, in line with the loss of protection from CVS disease of an early menopause, that puts them in a similar position to entire males in this respect. I think that for the people who might be the subject of such treatment, a slightly shorter life span is a small risk in exchange for the benefits of smaller size, and lack of menstruation for girls, and no risk in boys. Entire men who live to sixty or more can expect some gynaecomastia, and many would bless a disappearing prostate! People who cannot move for themsleves frequently develop fixed joint and spinal deformities, despite the best endeavours of ther carers and physiotherapists. On balance, I feel there is no downside to this treatment, for carefully selected patients. Probably, it should be approved by more than one doctor in consultation, like other life changing or ending procedures. John |
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