A few blog posts ago, Dr. San Roman noted in one of his comments:
The problem with lawsuits is that most patients do not WANT to sue their doctor but when they bring home a neurologically impaired infant they will find that there are many many expenses that will not be covered by medical insurance. For example, my patient with the amniotic fluid embolus had to work opposite shifts with her husband because they could not afford the type of child care that was needed by their child. Despite never spending any time home together, they still went bankrupt. With only one potential source to obtain the money needed to sustain their family they decided to file a lawsuit and received a 4.5 million dollar settlement from our hospital. Our hospital had no fault in this patient’s care but they were afraid of a larger jury verdict.
As I told him then, this was something, that I, too, kept thinking of whenever the “OBs operate/make other interventions because patients sue,” discussion comes up, as it invariably does when discussing c-section rates. Having been witness to family members going through lawsuits, it seems unlikely to me that most people would pursue one for fun.
Blogger Jemima Aslana, who has Asperger’s and depression, blogged recently about a “wrongful birth” case in which a woman successfully sued the medical professionals who did not encourage her to have a test that might have identified her daughter’s disabling genetic disorder in time to have an abortion. For many of us, the idea of “wrongful birth” takes us aback, or even horrifies us, carrying as it does the implication that a given child that now exists would be better off not being born. And yet, Jemima says:
You know… on one hand it’s fucking awful everytime to hear that disability will cause people to abort a child.
On the other hand it’s also fucking awful to hear people judge those who have decided that they cannot care for a severely disabled child. Who are we to judge how far their spoons will stretch?
And even worse to hear people judge those who sue in order to get the money required to care for such a child. Being disabled is fucking expensive in many cases. Being a parent of a disabled child does not automatically make you able to pay the bills. State might fund things until the child turns 21 as in this case, but what then?
I cannot fault this woman for ensuring money to support her daughter, when the state no longer will. I cannot fault her for trying to make the best of bad situation - the bad situation being living in a country that does not value the lives of disabled people, meaning that we become heavy financial burdens on families that cannot foot those bills.
I know we don’t want to be seen as burdens. And to view us as such is incredibly dehumanising. But let’s face it: I’m lucky I live in Denmark, ‘cause that makes me far better off than most Americans. In the US, whether or not the parents understand, love and support their child, having a disability can be bloody costly, and a financial burden of that size is not something everyone can bear, be they able-bodied or not.
If we think it is okay to abort a child because we cannot afford one. We must also approve of aborting a child if the cost of caring for its disability would exceed what we can afford. If one cost-analysis is okay, then the other has to be also. Not until the financial cost of raising a child becomes the same for the parent whether or not the child has a disability or is able-bodied, can this decision be made purely with consideration of disability-ethics.
This should not lead us to judge the parents who abort a disabled child, but should rather lead us to judge the society that does not want to help people with disabilities, so that our loved ones shouldn’t have to bankrupt themselves in order to secure care for us. Can we really fault a parent who wants to be sure they can support their child financially?
s.e. smith at Tiger Beatdown, who included Jemima’s post in her discussion of wrongful birth cases, connects the dots as well:
Many families face the unenviable choice of being full time caregivers indefinitely, or surrendering children to foster care, because there is no middle ground. We are still suing, and protesting, for the right to live in our communities, and wrongful birth suits are an example of one way families can make it possible for their children stay at home, since they don’t get the support they need.
What I see in wrongful birth suits is the need for a larger discussion on social support for people with disabilities. Parents facing unexpected medical costs need to get them covered somehow, and, well, a lawsuit can be one way to do it, especially since support for people with disabilities drops off radically after age 21, which means that even if a child qualifies for benefits, as soon as she turns 21, those may dry up. She still needs support, but it’s not available.
Nearly every expecting woman thinks, if only briefly, about what she would do if her child is born disabled, or becomes disabled. How will she care for them and still keep her job, her home; how will she care for her other children? What happens to her disabled child when she dies? Maybe she starts to notice how the stories, fictional and real, that we see about families coming to terms with raising a disabled child avoid dealing with these questions.
The emotional anguish, the physical exhaustion, the relationship stress, all those may be mentioned. But it still seems taboo to depict the possibility of going bankrupt while caring for someone with a disability, or what happens when parents are no longer around to protect a disabled child. Too depressing for prime time; too condemning of our for-profit system and nonexistent concern for our most vulnerable citizens and their caregivers.
The increasing risk of lawsuit for birth injuries or even wrongful births is one of the many ripple effects of that system; and when OBs and other medical professionals consider the risks of lawsuits, it might be useful to consider that their patients may not be looking for someone to blame or for a rich payday, but for anything that will allow them to care for their loved ones and give them some security. It’s not a fair or sustainable method, but for many, it may be the only one they have access to. If doctors want that pressure to decrease, they are going to have to choose one of two paths. Either continue to see those plaintiffs as enemies and attempt to use the law to cut off even this mode of relief for them, or advocate for social and political change such that access to care is seen as a right of every citizen, regardless of ability to pay.