A Mother's Silence Speaks
A mother on life support in Georgia, DOGE pulls the plug on pregnancy research
Notre Dame University press is offering a 40% discount for preorders of my The Dignity of Dependence as part of their summer event with the Catholic Theological Society of America. You just need to order directly from the press and use the code 14CTSA25. Hang onto your receipt, I’ll have a preorder reward this summer :)
For The Dispatch, I have an essay up on the case of Adriana Smith and her son Chance. Smith is the mother in Georgia who suffered a medical crisis at 9 weeks pregnant, experienced brain death, and has been kept on life support in the hopes that her son will make it to delivery.
At the top of the essay, I’m going over what’s actually going on as a matter of law —it’s Georgia’s advanced directive law, not the state’s abortion law that’s governing here. A mother can specify ahead of time that she wants to avoid life support if her baby is pre-viable, but if she didn’t specify that she wants life support removed while pregnant, no one else is allowed to make that choice for the baby.
I didn’t want to write about the case just to correct legal misinformation. I think it has relevance outside of the very charged (and rare) issue of pregnancy. Many of us can expect there will be moments when the people we love will have to speak for us when we are silent. What can we leave to guide them?
What happens to Chance depends on his luck and his medical team. But Smith’s case shows how quickly we can lose our own capacity to speak for ourselves. Any of us may find we suddenly rely on the balance of what the law allows and the prudential judgement of the people we have entrusted ourselves to. The capacities and interventions that seemed very abstract when presented as a series of choices initially may seem very different in the moment.
Georgia allows a mother to entrust her child to be raised by someone else if she dies, but it does not allow her to delegate the choice about whether her unborn child will live. After the umbilical cord is cut, each of us can newly be entrusted to our mothers, or someone else, for the choice about what medical treatments to consent to on our behalf. With the ever growing scope of medical aid in dying to encompass even those who are not dying or physically sick, we may soon ask others to decide whether we should receive the “treatment” of a medically induced death.
How can any of us delegate this responsibility? For the late philosopher Alasdair MacIntyre, the question of what it means to be a medical proxy hinged on what it means to be a friend.
Read the rest at The Dispatch…
(I used a gift link above, but if you want to become a regular Dispatch reader, the code LLS will give you 15% off an annual subscription. I’ll be writing there more often as a contributing columnist.)
I’ve also been writing on pregnancy, science, and silence for
. I got to interview Dr. Isaac Michael of the CDC. On April 1, he and the rest of the Pregnancy Risk Assessment Monitoring System (PRAMS) team were laid off. He wants the world to know that stopping this survey and analysis work will be bad for women and babies.“Our program was unique,” he told me, “No one else was doing this. We were the only ones with this massive infrastructure and the relationships built up with the state departments for years to be able to do this.”
If a state governor decided to try to stand up an alternate survey, they’d need to start over from scratch. And every day Michael and his colleagues are on leave, the gap in the data grows…
When you do this kind of work, the saves are stochastic—they show up in the averages, but you can’t point to the specific individuals. The work has to be done in trust that connecting more women with doctors, lowering smoking rates, increasing breastfeeding support, etc. means that somewhere out there are mothers and babies snuggled together, who might have otherwise lost each other.
It takes a statistician to feel romantic about the numbered-but-nameless children who will grow up not knowing they were counterfactually in danger.
It's clear the numbers are deeply moving to Michael. When I asked him why he chose to work at PRAMS, when there will always be demand for data weighting, in public health and elsewhere, he said the program was his dream job.
I don’t have a clear call to action for PRAMS, alas. And there’s a lot that’s going wrong at the CDC, so it can be hard to figure out where to try to intervene. But, at the same time, Congressional Republicans have been going up against the White House to limit PEPFAR cuts, so I want to leave you with hope that some salvage is possible.
Leah, I am doing some research using PRAMS and am connected well with the health economist community who study maternal and infant health. If there's anything I can do to help Michael advocate please let me know.
I served as the medical POA for my late grandmother (and will be likely serving soon for my in-laws). There are so many levels of challenge to this role.
Even if you have a high degree of friendship, often understanding what someone else wants for their end of life care is often unclear unless you have very specific, rather morbid conversations. Not everyone wants those, and so you have to navigate around a lot of feelings even to get the jist of what they’d like. Do you want to be intubated? What if it’s just an infection where you have a 50-50 shot at recovery? Often even in the moment the decisions aren’t easy, if the doctors can even give you statistics like this. The more you can discuss these things, the easier it is to be a medical proxy prepared for different options. It can be hard for someone who is nearing the end of life to have those conversations, so it’s better to address them earlier (like 70-75) and write them down than it is to wait until crisis hits. In CA, the recommended form is a POLST. Working on this document is a good excuse to start these conversations, even if it isn’t very robust itself. Some Catholic medical professionals have expressed concern about the POLST, but having any form is better than none. We noted that decision should be made within a Catholic moral framework. It was helpful to have read (and watched YouTube videos) on the subject. I particularly liked Dr. BJ Miller and Shoshana Berber’s book A Beginner’s Guide to the End. Miller is disabled so it made for a particularly interesting perspective.
Even if you have a wonderful doctor who does a great job explaining things, sometimes it’s not clear in the moment how well the patient understands. The elderly - especially if they have any conditions - reach a level where they function more like tweens. They understand quite a lot and can hold a good conversation, but their executive functioning isn’t so strong. You don’t know when they leave a doctor’s office if they will remember an off-handed comment or the main thing they are supposed to remember. In some ways, that’s harder as you have to navigate experiences with them where you both have different recollections of what took place. You have to maintain a high level of trust, despite a significant degree of often unrecognized memory impairment. Sometimes that means walking with them through a degree of unreality. It’s hard to temper one’s own expectations when this happens. It’s also very hard for anyone to go through these dynamics with a parent.
One thing I have observed in many care situations is that grandchildren often have an easier time than children in processing the dynamics. Because they don’t feel the weight of losing a parent, a grandchild feels less emotionally burdened. After all; their grandparent has always seemed older and closer to death. Impairment or disability feels like a more normal state to a grandchild, where a child still remembers when they depended on the parent for everything. It feels more world-shattering to lose a parent. In some ways, giving medical POA to a grandchild (or to the spouse of a child) can relieve some of the stress off one’s own children.