Ethics

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curiousgeorge
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Ethics

Postby curiousgeorge » Wed Mar 23, 2016 1:53 pm

I have all of your documents, protocols and case studies, but I am wondering if you would be willing to write a statement as to why you believe in the standards of spinal muscular atrophy (SMA) care you pursue with your own patients, which I can present at this meeting?

(Asked by a parent)
Last edited by curiousgeorge on Wed Mar 23, 2016 2:19 pm, edited 1 time in total.

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bachjr
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Re: Ethics

Postby bachjr » Wed Mar 23, 2016 1:53 pm

I believe in whatever the parents want, not third party people who have no business judging care of other peoples' children. You can let “nature take its course,” manage them noninvasively, or invasively (which I do not recommend).

JB
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

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curiousgeorge
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Re: Ethics

Postby curiousgeorge » Wed Mar 23, 2016 1:56 pm

Is it unethical to treat children with SMA type 1?

(Asked by a parent)

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bachjr
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Re: Ethics

Postby bachjr » Wed Mar 23, 2016 1:59 pm

"The parents elected in infancy that the child should be on long-term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated (trached) in the hospital. The leader of the long-term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long-term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long-term ventilation now. They argue that long-term ventilation might have been avoided by applying to a court of law when the child was an infant."
(Gray K, et. al. Spinal muscular atrophy type I: Do the benefits of ventilation compensate for its burdens? Journal of Paediatrics and Child Health 2013;49(10):807–812.)

Interestingly, some clinicians agree that children should be put to death against parents’ wishes when they are infants, but when older, the physicians change their minds. Might this be hypocritical or at least irrational? These are often the same physicians who do laboratory research to find treatments and cures for neuromuscular diseases and solicit funding by claiming that treatments are cures are near. It might be pointed out, however, that you cannot treat or cure a dead child.

Personally, since we know that few if any children with SMA 1 need tracheostomy tubes to survive into adulthood, that the parents are far more adroit care providers than the average nurse or even physician, and that a tracheostomy tube only becomes necessary for survival when the parents are insufficient adroit at using CNVS and MIE, in our opinion, tracheostomy tubes should never be used for these children and if their parents want them to survive they should become competent in CNVS and MIE and be able to train other unlicensed care providers to assist them. The government balks at paying for 24 hour nursing care, which I really do not disagree with, but these kids who have competent self-directed parents should not need nursing care but raher simple personal care assistance. The children can invariably communicate their needs by using augmentative communication methods including eye gaze computer triggering software. The real issue here is that doctors feel that parents cannot make the decision that the doctors consider appropriate which is to let their children die in part because the doctors themselves do not want to take the time or make the effort to learn noninvasive management severely disabled children.

JB
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School


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