DW Signing on for a late night incursion into the ethical grey zone that is maternal rights. Although not in the typical way that you might think.
Today I will be advocating an argument also touted by self-taught maternal rights expert/ethicist Helen Harrison. Helen Harrison has written several articles that are featured in Neonatology Journals, The New England Journal of Medicine, Pediatrics' Journals and various other journals of medical repute. My primary source for this discussion is an article called The offer they can't refuse: parents and perinatal treatment decisions. This article can be found in most academic databases (for you students out there) as part of the journal Seminars in Fetal & Neonatal Medicine (2008 issue 13). Helen Harrison is involved in neonatology as the result of a premature and medically complex birth (she was the mother) in which ethical decision-making played a key role. Due to her, perhaps, the hardship associated with that experience she decided to do what we all do when faced with adversity - become ridiculously well-informed and self-taught experts in other people's fields (*crickets*) what? nobody? Just her? Well...that is precisely what she did. Helen Harrison is a maternal rights ethicist with a focus on practice. In this article, she primarily discusses maternal rights that become compromised when health concerns complicate fetuses that are in the "gray zone". The gray zone is an area of development where viability and survival rates are either scientifically untenable or the cost of rearing such a child are severely burdensome on the family.
The problem here is that parents are given little, if any, choice to decide if they want to undergo extremely costly and, from the evidence-based practice standpoint, sometimes futile treatments. Statistically speaking the children have likelihoods severe developmental disablement. Harrison's ethical argument presents information in an evidence based format and balances physician paternalism vs. patient autonomy and non-maleficence and beneficence. These are several of the main ethical theories used to analyze most medical and healthcare decisions (other ethical issues look at cost vs. outcome but that doesn't come into play much here). We'll look at paternalism vs. autonomy in a moment. For non-maleficence and beneficence, this is the theory that states can we do good and not do harm. In short, Harrison argues that the harm or good, as it were, is ultimately up to the parents to determine (not society); because, once the child has left the neonatal intensive care that child is the parents burden. Parents have a right to know what kind of outcomes are likely for their children if they undergo certain treatments and weigh their options. Regarding paternalism and patient autonomy we have to understand that in some cases we must defer to the physician for guidance (and as patients we like to do this) but that the parents (or patients) should be the ultimate arbiters of an informed decision.
This leads us right into our proposed solution for this problem which I find disgustingly elegant! Her solution, now get this, is to, during prenatal visits and check-ups, actually inform parents of this gray zone birth range and outcomes of forced deliveries during that time; give them the options of what can be done and what the EVIDENCE BASED outcomes of various solutions are; and let them sign an advance directive for their unborn fetus. Its so elegant I could hang myself. Advance directives are part of hospital admission packetsand are given to ensure that if something happens we what lifesaving measures you (as a patient) want. Why can't we do it for fetuses? I say fetuses on purpose because word choice is quite important. Fetuses are distinct from infants, which are distinct from young children, which are distinct from teenagers, which are distinct from adults. We, as humans, make chronological distinctions in language because there is some understanding that any given thing has undergone a change. I strongly believe that when people try to use the word children to describe an embryo or a fetus - they are committing a lie...but that's a different essay ;). I have digressed. I believe, like Helen Harrison, that prenatal advance directives should be standard of care of all prenatal physicians and neonatologists. It would eliminate dilemmas between mother and physician almost entirely. Few solutions are as elegant. Nothing missing, nothing extra.
I am in full favor of it.
This is DW...Signing off!
Although I find the information shared in this blog very informative I also can see how the information shared could come across as not only unappealing but also difficult to understand. Not super difficult to understand at all just lengthy and on such a touchy topic I find it important that one catches the reader with their point right of the bat. It is not who is involved or what they are discussing but how it is being presented to those reading it. Although I can not personally agree with every statement and decision made based on my own personal values I will say that I find the argument persuasive and interesting. However, I have to go as far as to say that if you are going to discuss such a sensitive topic with so much force and expect people who need to hear it to not only read it but actually get a understanding of why it is that your information is important you have to bring it a little bit closer to easy understanding and therefore go straight to making your point understood to all that read it.
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