Quality of Life VS. Pro-Life

I will start this post with the disclaimer that this piece will be unlike the others I have written so far. It’s by necessity more academic and certainly more political, less about death itself, and more about the state of the palliative care system in the US more generally. I’ll be writing about the connection between abortions and pediatric palliative care, more specifically the overlooked connection between abortion bans and the lack of pediatric palliative care systems in the United States. I am not writing this to try to change anyone’s mind or shame anyone who may not choose to utilize abortion as healthcare. I am only hoping to add to the body of arguments that truly show how abortion bans are incredibly anti-life.

When I landed in South Africa, I was met by Dr. Julia Ambler and Tracey Brand, the cofounders of Umduduzi Hospice Care for Children, and my gracious hosts for the week. Umduduzi is an NPO that was established in 2012 to increase the prevalence of and access to pediatric palliative care in the KwaZulu Natal region of South Africa which is home to a whopping 12.42 million people. Dr. Ambler brings her clinical expertise and Tracey brings her many years of clinical social work in a pediatric palliative care setting. While Umduduzi refers to itself as a hospice for clarity of communication about its work to the public, the team operates within hospitals in the KZN region. Umduduzi carries a patient load of about 400 new patients a year (not counting remaining patients from the year before) for a team of 1 doctor, 2 part-time social workers, 4 part-time nurses, and a translator across KZN’s hospitals. The team acts as pediatric palliative care consultants, looking not only to provide care to children and families in need but to train current and future doctors better to provide pediatric palliative care. Notably, Dr. Ambler has succeeded in implementing advanced care plan documentation, forms that detail the treatment wishes of children and their families, in all the hospitals that Umduduzi operates in. While this might seem like a small feat, my jaw was almost on the floor in disbelief when Julia showed me this element of her work. In the US, ACP documentation is extremely underutilized and unregulated, a topic that became particularly of note during the COVID-19 pandemic. In other words, the Umduduzi team are the pediatric palliative care gurus and whisperers of the KZN region of South Africa.

On my first full day with Dr. Ambler, she took me to one of the regional government hospitals to see some of her patients. One of these patients was a just-born baby who had hydrocephaly, a buildup of cerebral spinal fluid in the brain. Depending on the severity of the condition, hydrocephaly can be treated by inserting a shunt surgically that helps to drain the fluid and therefore relieve pressure on the brain. However, some cases are so advanced that a shunt is a temporary bridge to a problem that is likely to be fatal in the future. Moreover, children with hydrocephalus experience developmental delays, both physical and mental, as well as pain. The patient Dr. Ambler and I were going to see was an extreme case and she was currently in the NICU of the hospital. Despite the small size of the hospital itself, I was shocked to see the size of the nursery for sick babies; it was huge and packed wall to wall. All around me were infants with serious illnesses: every type of encephalopathy (brain abnormality), congenital heart defects, and pulmonary disorders. But the encephalopathies specifically caught my eye, mostly because they are the most visually obvious, due to enlarged or severely decreased skulls, but also because I had entered NICUs in hospitals back home and seen maybe a single case. I won’t paste pictures of hydrocephalus and microcephaly here but if you are not easily put off by medical images, I would suggest looking up infants with these diagnoses so you can visualize the NICU better.

The little girl Dr. Ambler and I were set to see was by far the most severe case in the NICU that day. It was Dr. Ambler’s first time consulting on the baby as she was born only days earlier but with one look Dr. Ambler knew that the baby had a matter of hours. I would be lying through my teeth if I said that this encounter didn’t deeply affect me. Perhaps because I had not seen many cases in person, or perhaps because this case was so severe, I left feeling disturbed and confused. As concluded the day, I did some basic googling to compare the rates of encephalopathies in South Africa to the USA, figuring that just because I hadn’t seen them in my exposures to hospital settings at home, it didn’t mean they weren’t there. But the numbers confirmed my suspicions. In North America, for every 100,000 babies born, approximately 68 will have hydrocephalus. The rate of babies born with hydrocephalus in Sub-Saharan African countries is 750 babies per 100,000 births. Despite these statistics being readily available, there was almost no information to explain the discrepancy in incidences across geographic boundaries. Moreover, there is little research into the direct causes of congenital hydrocephalus generally. As we were leaving, I asked Dr. Ambler why there were so many encephalopathies in babies and children here. She highlighted the same dearth of information on hydrocephalus and encephalopathies more generally but added that she would guess the difference in cases seen is due to abortion utilization rather than an actual difference in the incidence of diagnosis antenatally (diagnosis through screenings before birth). She explained that because South Africans, specifically Black South Africans, are extremely religious and traditional, most women will not utilize medical termination as an option even if they are aware their children are sick. I thought on this a moment as a horrible realization sunk in just in time for Dr. Ambler to say my thoughts out loud – “I wouldn’t be surprised if you do start seeing more of these cases soon in the US.”

After my time with Dr. Ambler and Tracey, I moved to a rural region of KwaZulu Natal called Ingwavuma to stay at Butterfly Palliative Home. Butterfly is a hospice orphanage for terminally ill children who have entered the “end of life” phase. This does not mean that they are actively in the immediate end-of-life phase – i.e. actively close to death – but more so that there is nothing curative that can be done for them and they all will eventually succumb to their illnesses. However, there is not “nothing” to be done; their pain and symptoms can be managed such that they are allowed to be children right up until the moment they take their final breaths (I promise, there will be more specifically on Butterfly Home and the Butterflies in a coming post). Many of the children of Butterfly Home have congenital illnesses which are illnesses that occur before birth, and all require acute and constant attention and palliative action. As I have lived amongst these children and their caregivers for the past 4 weeks, I have become acutely aware of just how much work, care, and precision it takes to continuously and correctly provide palliative care to these seriously ill children.

While it has been a privilege of a lifetime to learn from Butterfly Home, I continuously had this bubbling pit of fear in my stomach. Dr. Ambler’s words echoed in my head, as did the image of the NICU filled with babies who, like the Butterflies, had serious congenital illnesses. If this was a reality that was about to be facing Americans, were we at all prepared? More accurately, are our medical systems prepared? Of course, I already knew the answer to this question because it was the entire basis of my Watson proposal. America has dropped the ball when it comes to palliative care generally and it is certainly ill-prepared to handle a larger population of children who require consistent palliative care for them to have quality of life. In a study of the US palliative care system done in 2021, it was estimated that there were 54 pediatric palliative care programs; an estimation because there was such a lack of statistics on pediatric palliative care systems that the researchers could only go off of available information. Of these 54 programs, 37% are understaffed, 60% reported an inability to meet clinical demand due to staffing, and 63% of pediatric palliative care healthcare workers in these systems reported burnout. This was in 2021 before Roe v. Wade was overturned and more restrictive abortion bans inclusive of medical terminations were passed throughout the country. In other words, our country was ill-prepared to deal with complex and terminal illnesses in children before we had laws that would essentially increase the amount of complex and terminally ill children.

If this isn’t enough to cause some pause, a geographical analysis might be. In 2020, the National Hospice and Palliative Care Organization released a report on the pediatric palliative care services available in America. A section of this report had details about home services, a necessary piece of the pediatric palliative puzzle that allows sick children to return home to continue living with the time they do have. The report found that 71.5% of USA counties are without access to home-based pediatric hospice care, 81.2% are without home-based pediatric palliative care, 78.7% are without inpatient-based pediatric hospice care, and 81.5% are without inpatient-based pediatric palliative care. Then they put together a map of where these services exist in the US:

Now, here’s a map that’s been appearing in the media lately, a map of the abortion bans currently enacted in the US:

In comparing these two maps, a terrifying theme begins to emerge. The states that have restrictions of any type also happen to be states that are severely lacking in pediatric palliative care services. Take Mississippi for example, which has one of the most restrictive bans on abortion in the US. Mississippi is shown to have a small amount of home hospice care in some of its counties but is otherwise completely devoid of home or inpatient pediatric palliative care. Now we could say that there are states without abortion bans that are also lacking in pediatric palliative care services which is unsurprising given that palliative care, and pediatric palliative care specifically, has been determined to be lacking in our country in general. However, in the states where abortion is not banned entirely, medical termination for fetuses with fatal or severe abnormalities is permissible. In states like Mississippi, it is not.

I want to make clear before I continue: I am in no way saying that everyone who learns their child could have a serious illness before birth must medically terminate their children. At Butterfly, I am living with twelve children who are beautiful, full of life, intelligent, surprising, and simply amazing because their parents chose to have them. However, these twelve children are the minority – they had Butterfly Home rescue them from hospitals where they lay abandoned or found in bushes where they had been left or were in such horrible situations of neglect that they were removed from their homes. As Tarryn Bell, the founder of Butterfly would say, “South Africa has a dirty secret” – it has one of the highest rates of child abandonment in the world, and the likelihood of abandonment increases exponentially if a child is born with a complex or terminal diagnosis. This is not necessarily because of the diagnosis itself but rather the burden of responsibility that falls on the parents of a child with a complex and serious illness. At Butterfly Home, children receive around-the-clock palliative care; it is this care, the care that allows them to live pain-free with their symptoms managed, that enables them to be children and to thrive in the time they do have. But this care is constant, arduous, and the work of incredible people who carry the palliative mission so deeply in their hearts.

So if the US is already unprepared to provide services that even mimic the most basic mission of a place like Butterfly, how can we expect to be prepared for the inevitable increase in need that will accompany abortion bans? The current gap in the supply of US doctors trained in specialty palliative care is only expected to widen over the next 20 years. By some estimates, the gap could be as large as 9,000 to 16,000 physicians by 2040. Studies have already been conducted to estimate how the patient population requiring pediatric palliative care will increase in conjunction with abortion bans. One 2024 study on abortion bans’ effects on birth defect rates found that abortion bans increased the prevalence of any birth defect by 16.6% for systems with live births only. Moreover, there was a 32.5% increase for anencephaly, one of these encephalopathies I mentioned previously that are so prevalent here in South Africa. Yet another study conducted by Stanford Medical found that abortion bans will increase the incidence of congenital heart defects, another diagnosis that benefits from consistent palliative care. Before the argument is made, these studies are not saying the actual prevalence of these diagnoses will increase as a result of abortion bans; these rates will remain constant as nothing is biologically changing. However, the incidence rate will appear to increase as an artifact of abortion bans as now all these pregnancies will be carried to term and born, increasing the number of children who require intensive palliative care in states where these bans exist.

Again, I am not at all claiming that there is no way for children who are born with these anomalies to have a quality of life. There will of course be parents who fight continuously for their children to receive the care they need; there are parents in states across the US who already do this. But this care must be consistent and controlled. and therefore it must be easy to access where these children are born. In the example of Butterfly, an entire home for 24/7 palliative care was constructed and the careful curation of its environment is what accounts for its success and the children’s quality of life up until the end. The reality is that pediatric palliative care, per the map above, is not easy to access across the US and unfortunately, it happens to be specifically inaccessible in some of the states with the most restrictive bans. Moreover, even if families can access care for their children, the average cost of birth defect-associated hospitalizations during the first year of life in the US was $61,881 in 2023, an incredibly expensive layer to this already complicated picture.

So with all of this information, I have to ask: what is “pro-life” about parents who are unable to provide care for their seriously ill children? We are consistently probing the pro-life stance in terms of the health of the mother but we must also be asking what is “pro-life” about forcing a child into this life who requires a type of care we, as a country, are unequipped to provide. Where pediatric palliative care can not intervene, where it is not allowed to be successful as it is in the environment of Butterfly, children with these complex illnesses and terminal diagnoses suffer from uncontrolled pain, live in and out of ICU or emergency departments, and experience malnutrition, depression and low quality of life. My time at Butterfly has been the experience of a lifetime; it has shown me the success that pediatric palliative care can have when conditions are made to be perfect – where care can be constant, medications controlled, money donated, a stable home provided, and love unlimited. This is not the reality of pediatric palliative care in America.

I’m not writing because I have some grand solution or way forward – I certainly do not. But I have been spending the last several weeks thinking more about how deeply the reverberations of healthcare legislation like abortion bans will have on an already burdened medical system at large. I fear that the image of the NICU-filled children, some parentless or abandoned, is more of a looking glass into the US healthcare system than a foreign phenomenon. I fear that the burden of medical expenses and care needs of chronically ill children will raise the abandonment statistics closer to home. I have found myself so angry at the hypocrisy of a pro-life stance that does not care about whether these children have any quality of life once they are outside the womb. These are the things we all need to consider, whether we are a part of the healthcare system or not, as we move forward. Whether we agree with abortions or not, the issue still stands: palliative care in the US does not have the means to care for the number of children we are sure to see require it as these bans continue to take root.

After the election, I found myself struggling with my project and my future career ideas. There are so many changes that are about to take place in the United States generally and it was hard not to feel that perhaps my energy should be used combatting more of these obvious issues. My project and the goals I have felt silly compared to people who are researching climate change or how to combat racism. However, South Africa has shown me the potential of pediatric palliative care when done correctly through doctors like Julia Ambler and places like Butterfly Palliative Home. It’s also shown me the potential dangers of the abortion bans that exist or will exist in the US and the importance of advocating for palliative care systems during these times. As I move into the second half of my Watson (yes you read that right, I’m just about shy of the halfway point), I will be keeping my eye out for the ways that people advocate for palliative care programs on a public health and policy level. I have been feeling more and more recently that this will be just as important for my return to the US and the challenges I will find there as I continue to pursue reform to end-of-life and palliative care at home. For now, there are more questions, frustrations, and fear than answers, but I think that signals that there is room for more fight and more growth, more of a chance to explore yet another angle to this project and the problems the US is currently facing.