Ethics .... Surgery to stunt growth ...

mshheaddoc said:

With the new case of the disabled girl whose parents had surgery to keep her a "smaller frame size" to keep her more easily managable has brought up another stir of controversy. I was wondering what some of you were thinking of the situation ... and why. Most bioethicists disagreed with the situation, except one (the one at the hospital where the operation took place) was swayed by the parents arguments. Is it really the parents job to argue in this case?

Click to expand...

Well, I'd have tp say that in the absence of capability for logical thought on the part of the child, who will never develope any further, that the parents would be the logical choice to determine the child's welfare. There is obviously disagreement about the issue. I would challenge anyone who vocally pushes against the parents to ask themselves if they would be willing to take on such a responsibility in the first place.

This is a dilemma that many families face: the ability to care for their severely-disabled adolescent/adult child at home vs. placing them in a nursing home or group home. My family has 2 family friends that are facing this issue right now with older adolescent severely disabled children. They are doing everything they can to keep their kids at home, but it is incredibly difficult to move, bathe, dress, etc a child (who can minimally help, at best) that is 150#. You might think that this shouldn't be a problem, but keep in mind that the parents of these children are aging, too.

I think that almost all of these disabled children or adults are significantly better cared for at home. Even the "good" nursing homes leave a lot to be desired & I see way too many of their residents in my ED...and it isn't pretty.

I think that what these parents did was reasonable for the long-term benefit of their child.

I'm going to keep away from giving my own thoughts on this topic. However, let's look at the real issues here. First, the disorder that she has will not allow her to make the decisions that a normal person would. This means that another person (i.e., legal guardian) will have to make the choices for what health care this disabled person receives. Second, are there any religious aspects that play a role in this case? Third, is it cost benefit for the family to have had this medical procedure done? Fourth, can the family afford to hire a person to give Respite Care, or could the family try to join a company that offers Respite Care? Either way this will be expensive. Fifth, how will this case affect medicine in the big picture? Is this case going to lead to more people wanting to “control” the outcome and way of living for their children that have a normal body, or even parents who have a child with a minor ailment? New regulations need to be implemented for these types of situations. For example, there are very tight regulations for inheritable genetic modifications, but not on clinicians who can perform body changing surgeries.

The day is now where a lot of ethical barriers are being tested, challenged, and changed. Society is now at the point where we have a much better understanding of how the body works, thus technologies are being developed that can change how the body functions and develops. Is keeping this lady from going through puberty a harmful or helpful thing? As a man, I can’t really give any insightful thoughts about how not going through puberty can harm a female since I don’t know what it is like as a female?

Is the life expectancy of this lady going to decrease or increase with having had this medical procedure done? Why is there not an attempt for the management of this syndrome beyond body altering surgery (i.e., preventing puberty).

Does this family have health insurance? Should there be new legislation passed for situations like this? If this young lady were to have all of the possible management that is available with today’s technology and then the young lady goes home and a couple of months later a 1 million dollar medical bill comes in the mail, how is the family going to afford to pay the bill if they don’t have good health insurance, or if the health insurance company refuses to pay the bill?

Should tax payers pay for these types of surgeries?

mshheaddoc said:

Completely agree with you on this, its obvious the parents have the say in the child's welfare and they are just doing this to make it easier for themselves in the long run. I can understand why they would want this operation.

But of course the main argument most are making are is the "god complex" standpoint that medicine and bioethics seems to thrive on (go figure that controversy seems to rule ) not the "logical standpoint of the caretaker" standpoint which I think most of those who have commented so far tend to take.

Click to expand...

Why stop at the uterus and breasts?
They could always amputate the arms and legs to make her even lighter. It's not like she's using them anyway. And she'd be even more portable.

The issue is immensely complex, to say the least. However, at the end of the day, medical treatment options ought to be decided by the patient, or by somebody who has legal guardianship, and the best interests of the patient in mind.
While this decision is certainly controversial, I very much doubt that it was taken lightly. And all healthcare workers will increasingly be faced with ever more complex ethical issues. To some, euthanasia and abortion procedures are perfectly acceptable. To others, they are tantamount to murder. Personally, I of course have my own views on these issues, but I cannot force these views upon my patients, just like I can't force a patient to undergo, or refrain from, specific treatments.

Of course, some current and future procedures are so controversial or ethically complex, that physicians should or will have their own personal opinions about them. And I think it's every physician's right to abstain from performing procedures s/he deems unethical. Thus, I fully support any physician who for instance refuses to carry out abortions on ethical or religious grounds. But just as that physician shouldn't have the power to ban such procedures, physicians shouldn't make decisions on bahalf of patients or guardians, who are capable of making informed decisions on their own.

Of course, the procedure in question here could be construed as a violation of the "do no harm" part of the oath we've all sworn to uphold. Yet the same applies to euthanasia and abortions, among other procedures.

At the end of the day, we must all strive to help patients and their families in the best way we can. And that will, invariably, increasingly raise ever more troubling ethical questions. These should be debated openly and frankly among medical practitioners, patients and society, but it is wrong to assume that any clear answers can be found.

Personally, I initially found the story referred to here troubling. However, I do feel that the parents have a valid argument. As to the question if I personally would participate in the procedure, I think the honest answer right now is that I simply do not know.

Of course, the procedure in question here could be construed as a violation of the "do no harm" part of the oath we've all sworn to uphold.

Click to expand...

Of course, the flip side of the coin in a lot of cases is whether to do nothing is tantamount to an even greater violation of the primum non nocere charge. This is the primary reason I believe we should have more legal options to prevent further suffering in patients with no chance of meaningful recovery and in those charged with taking care of them.

Cases like this are why I hate bioethicists. If they want to try taking care of a total invalid for a few months and see how they like it I'll accept they might have some idea of what the hell they're talking about. Otherwise they ought to STFU and go back to writing papers nobody reads. Especially Arthur Caplan, he's the media's go-to guy for "stern disapproval quote" on any subject on earth.

Otherwise they ought to STFU and go back to writing papers nobody reads.

Click to expand...

Nicely put.

I don't agree with this at all simply because they are basically removing vital organs/ tissues just so their child is more portable. I'd like to know more about how they initially transported the patient (via wheelchair, arms,etc) on a daily basis and how a few extra pounds and a few additional hormones would better her lifestyle. It does not make sense that one's weight and portability will solely yield her more love and care.

I don't think the argument was that she would receive "more" love and care, but that the parents believed that it would be impossible to keep her at home, if she grew to normal adult size, as they would have problems caring for her at home, as she is entirely dependent on help from others.

basically removing vital organs/ tissues just so their child is more portable.

Click to expand...

You might want to check the definition of the term 'vital'. Last time I checked, breasts and sex organs aren't necessary for life, especially in a perpetually gorked patient.

lobogina10 said:

I don't agree with this at all simply because they are basically removing vital organs/ tissues just so their child is more portable. I'd like to know more about how they initially transported the patient (via wheelchair, arms,etc) on a daily basis and how a few extra pounds and a few additional hormones would better her lifestyle. It does not make sense that one's weight and portability will solely yield her more love and care.

Click to expand...

They weren't talking about just the weight of the uterus and breast buds. They were doing these things to try to halt growth at 75 lbs so she didn't progress to 150 lbs. That's a significant difference and can certainly mean the difference between a parent being able to care for a person at home vs. dumping them into a facility with lifts, helpers, ect. Their point is that they are able to care for her now at 75 lbs but at 150 lbs they won't and add to that the parents will be older and progressively less able. People can bemoan the "sterilization" of this girl but the fact is that in a person whose mental development is arrested at that of a none year old menstruation would be painful and confusing and pregnancy could only occur by rape. Note that I'm not arguing for these procedures to be done. I'm saying that the parents should have the right to make that decision. This situation of loving parents (by all accounts) making decisions with their doctors and the hospital ethics board with the best interest of the patient as the priority (again, by all accounts) is as good as it gets. I routinely see patients who are wards of the state in the ED who have no one to advocate for them or protect them from futile end of life atrocities. We should let the parents handle cases like this.