A complex medical ethics case has been playing out in a
Children’s Hospital in London England.
Charlie Gard was born last August with a severe genetic disorder which
affect his brain, muscle and ability to breathe. In addition he has congenital deafness and
suffers from severe epilepsy. His
parents, Connie Yates and Chris Gard were seeking to get treatment for their son
outside of England, against the advice of the hospital’s medical team.
This week it has been reported that Charlie Gard’s parents are
ending their legal battle to seek treatment outside of the UK. It seems this story is coming to an end. A very grim end.
The hospital in the situation had sought a court order
allowing them to turn off life support.
This has raised the issue of what a parents rights are in relation to
their child’s care. The parents, in this
case, were doing what many parents posed with this tragedy would do, they would
advocate for their child to the best of their ability and explore every viable
treatment option. The hospital is also
trying to act in the best interest of the child and in their best medical
opinion to mitigate the suffering of an infant that in their best medical opinion
would not likely survive. In their view,
keeping this baby on life support would just prolong the inevitable. Both perspectives are compelling and this
case has sparked a furious debate over the future of this child.
Syndicated columnist Charles Krauthammer, in a recent
interview weighed in on this debate with some succinct and credible
insight. Credible in the sense that
Krauthammer is a trained physician who also happens to be a paraplegic. Dr. Krauthammer, provides a unique
perspective through his medical training and lived experience. Krauthammer’s opinion is bluntly stated “The
merciful thing to do … would be to remove the tubes and allow the child to die,
and to end the suffering.” However,
Krauthammer did not stop there. He
unequivocally stated that his personal feelings aside,
"The decision to remove life support must be the decision of the parents."
In spite of the fact he disagrees with the
parents, the right to make this decision lies with the parents.
This issue strikes very close to home for me and my family
as my own son hovered precariously near death only a few short years ago. We had to sign waivers and give consent to
treatments that were considered “experimental.”
Some of those treatments did do harm, harm that we are still living with
to this day. Those treatments that did
harm also saved his life. This is a
massive burden for any parent and my heart goes out to the parents of Charlie
Gard. The burden is made even more
difficult by the fact that these parents have to not only battle their own
emotional conflict but also advocate against their own medical team.
In patient advocacy circles we often talk about working
collaboratively with our health care providers.
This means we work together to share information and come up with
carefully considered and well thought out decisions. In our medical journey, we had some fabulous
clinicians who went to great lengths to explain our son’s situation and the
pros and cons of every treatment strategy.
After several weeks in the intensive care unit we knew implicitly who
was working with us and who we could trust.
“Trust” is extremely important in the health care environment. We saw parents who went through the process
of being told “there is nothing more we can do.” We saw them devastated by that pronouncement
and we prayed that we would never have to face that reality. We were lucky. We had a successful outcome. Did we always agree with our care team?
No. Did they respect our opinion and
give us the final say? Absolutely. Could
we have made the decision to remove life support … thankfully … we will never
know; but the bond we built with our care team leads me to believe that we
would have given them (our care team) the benefit of the doubt given their
demonstrable support for us and our son.
It is clear to me that the trust between Charlie Gard’s
parents and his care team was at some point broken or this protracted conflict
could have been avoided. We all may have
some opinion on whether it is right to turn off life support in this
situation. However, it is not our
decision to make. Unless the parents are
not competent to make a decision; the decision should remain that of the
parents. A decision made with competent
advice from their medical team. This is
something we all need to consider when we interact with our health care
system. The fact that we need medical
advice that we can trust. This is the
very basis of informed consent. Health
care is about more than diagnosis and treatments, it is about relationships and
trust. That is the tragedy behind the
Charlie Gard story is the relationship breakdown between provider and patient.
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