What Should Be Done with the Remains of Miscarried Fetuses?
It's time for America to consider legislation that would give grieving patients options after miscarriages.
In 2014, a British investigation discovered that more than 15,000 miscarried and aborted fetuses had been incinerated at UK hospitals over the previous two years. They had been mixed in with other medical waste, and in some cases their incineration helped heat and power the same hospitals at which those fetuses were miscarried. "Thousands of unborn foetuses incinerated to heat UK hospitals," was the headline splashed across the country's papers.
Suddenly, one of society's longest-standing taboos—miscarriage—had been suddenly pushed to the forefront of a nation's consciousness. That attention was long overdue: In the UK, as in the US, there was no national standard for handling miscarried fetuses.
As with all matters concerning pregnancy, there are a number of ways a woman may want to handle her miscarriage. Some women find comfort in burying or cremating the remains of the miscarried fetus; others don't consider their fetus something to be mourned, and prefer that it be handled alongside other medical waste. But the status quo in America often robs women of these choices altogether.
In the words of Erica and Joshua Raef, miscarriage "may be one of the least discussed, yet most common, sources of heartbreak." Like thousands of parents across America, they know that heartbreak all too well. Erica's pregnancy last year ended in a miscarriage.
In an interview with VICE, the Raefs described how, after seeing their baby's heartbeat weeks earlier, they were told at their next visit that it no longer had one. This was 13 weeks into Erica's pregnancy. As they sat down to work out how to manage the miscarriage, they were told that if they went into the hospital they would not be able to take the remains home for burial. This information, provided to the Raefs' doctor, later turned out to be incorrect, but it nevertheless led them to choose to wait out the miscarriage at home, in the hopes that they would be able to inter the remains of the fetus themselves.
It took ten days, but eventually Erica's body went into labor, and in her words, they "were able to see and hold [their] tiny and perfect little baby." Later that night, Erica began to bleed out and Joshua rushed her, unconscious, to the ER.
Some 18 months later, in April 2015, the Raefs stood up and testified about their experience in the Public Health Committee of the Texas House of Representatives in support of HB 635, a bill that came into effect at the beginning of this month and ensures that Texas parents will have the right to choose what happens to the remains of a pregnancy after a miscarriage. Already, Representative Four Price, the author of the bill, has seen the impact that this change in the law may have. Price told VICE, "After [HB 635] passed, many couples have called or sent letters saying how they had experienced similar circumstances and how thankful they were that this was now going to be the law."
A miscarriage is not, despite confusion in popular discourse, the same thing as a stillbirth. Every year in the United States there are more than 23,000 stillbirths—fetuses which die in utero after 20 weeks or longer of gestation. These babies are required by law to be either buried or cremated. In 34 states, parents may also receive a "Certificate of Birth Resulting in Stillbirth" or something similar alongside the obligatory death certificate. For a pregnancy loss prior to 20 weeks it is much more likely that the fetus, will be incinerated along with the rest of the day's medical waste or cremated and buried in an unmarked plot.
Yet the number of stillbirths in America is dwarfed by the number of miscarriages. Estimates vary due to lack of reporting, but the number may be close to 1 million a year; close to 30 percent of pregnancies end in a miscarriage.
As of 2014, in 27 states there was no explicit right for the mother (or her designee) to opt for a burial or cremation of a fetus which dies before the 20-week mark. In a further seven, one can opt for a burial or cremation but there is no duty to inform the mother of this power. This leaves grieving families in legal limbo and for many adds to their grief and suffering in the wake of a sudden loss. In the worst cases, it can lead to the dangerous situations like the Reafs'.
According to Tanya Marsh, a professor of law at Wake Forest University specializing in funeral and cemetery law, "the fundamental legal problem is that it never occurred to anybody until fairly recently, on the law-making side, that this is anything that they should care about." This is hardly surprising when one considers the lack of public understanding of miscarriage. In a recent paper in the journal Obstetrics and Gynecology, researchers found that more than half of respondents radically underestimated how often miscarriages occur. Representative Four Price said that even at the legislative level, a lot of education was needed. Price told VICE that while pushing their bill forward, legislators needed "to spend quite a bit of time educating members and staff members in the legislative offices in the House and the Senate as to why this was even necessary. Most individuals really had no personal experience or understanding of why this might be a good thing." Indeed, it was not an issue that Representative Price had considered himself until the Raefs visited with him. Price said, "That [visit] really was the catalyst for the bill."
It is hard to say when most miscarriages take place during a pregnancy, although the vast majority occur very early; in the first few weeks, many miscarriages may go unnoticed.
The 20-week mark distinguishing a miscarriage from a stillbirth is open to accusations of arbitrariness. According to Kristen Swanson, RN PhD, the reasoning behind that division doesn't make sense. In an interview with VICE, Swanson said, "The legal definition supposedly relies on the medical definition, which is, 'A stillbirth is the loss of a pregnancy past the point of expected fetal viability.' The legal breakoff tends to be 20 weeks. In most regards, we consider the medical breakoff to be 24 weeks. We use a legal definition of 20 weeks based on a medical definition that doesn't even apply."
It would be wrong to think that women who suffer miscarriages suffer less than women whose pregnancy loss is classified as a stillbirth. The area is little researched, but the experience of miscarriage has changed a lot since Irv Leon, a clinical psychologist and adjunct professor at University of Michigan, began working in the area of pregnancy loss in 1985.
"Then, miscarriage was not experience as loss of a baby, it was considered more as the loss of a pregnancy," he told VICE. According to Leon, the way in which women now experience an early-stage pregnancy as a baby is in part due to "the use of ultrasounds, especially early on, and the greater sharpness and clarity of the images."
"At around eight weeks, when one has the experience of the ultrasound where one sees the heartbeat, very often that is the beginning of the process of experiencing the pregnancy as a baby," said Leon. "Whereas before that, the pregnancy would usually be a quickening, when the mother experienced the baby 'move' in the second trimester." According to a June study in Obstetrics and Gynecology, 37 percent of women surveyed who had experienced a miscarriage conceived it as the loss of a child.
But the loss of a pregnancy can have different meanings to different people. As Joanne Cacciatore, PhD, an assistant professor at Arizona State University and founder of the MISS Foundation notes, "For a woman who has, perhaps, had trouble with infertility, and has been trying to get pregnant for five years, and finally gets pregnant, and she's so excited, and she's told everyone...and at 12 weeks she's miscarried—that's a devastating loss for her."
Martha Diamond, PhD, says that based on her research, "what effects the level of grief is the meaning of the loss to the individual or the couple. A very early loss can be absolutely devastating, or it can not [be]." For Cacciatore, and Diamond this means it is important to give parents control and choice over what happens after the loss of a pregnancy. This is, according to Leon, as much for psychological reasons as for moral ones. Providing choices in a situation of helplessness can psychologically assist parents by limiting and coping with what can be the overwhelming experience of pregnancy loss.
Like many parents across America, the Raefs were not given the chance to choose the method of final disposition for the remains of their pregnancy. This led them to extreme medical risk, but in the end it gave them what they wanted: the chance to bury their baby, which they had named Liam, following a small service on a family plot. This was something which gave them, in their own words, "a profound sense of closure." Cacciatore says that being allowed to mark the loss with a service and a burial—a ritual—is crucial to the grieving process.
"Ritual is very important for us to enact our emotions, for us to be able to socially connect to others around the loss," Cacciatore told VICE. "In some ways, parents use that ritual to be able to embody that love and connection that they so often hear doesn't matter, even if it is not explicit. Culturally, in an implicit way, we do hear it."
This ritualizing can be important even in the absence of a body, according to Kristen Swanson, Dean of the College of Nursing at Seattle University, who has done extensive research and clinical work with women who experienced a pregnancy loss. "People talk about 'making ceremony,' but I don't remember people talking too much about using the products of conception," Swanson told VICE. "It's more like they have a proper burial of the memory and have a proper ceremony surrounding that."
But Cacciatore emphasizes that however a family chooses to mark the loss of a pregnancy due to miscarriage—if they do so at all—is something which must remain an individual choice, and something that should not be forced on parents. "It is very important that ritual not be forced on people. Especially with very early losses, because for some women that may not be a child," she said.
Any legislation dealing with remains of a pregnancy has the potential to be incredibly fraught. While it is a separate issue, the closeness to the debate around abortion was very much in the mind of Representative Four Price when he and his staff were drafting the Texas legislation.
"We were very careful and deliberate with the language that we utilized, because any time you start to get into a debate or an area of law or proposed law where you are dealing with fetal remains, very quickly the assumption may be that you are entering into a pro-life/pro-choice issue, and that can immediately polarize folks," Price told VICE. "This bill had nothing to with that issue, what we were intent on doing was making sure that parents who had a miscarriage... had an absolute right to control the disposition of their child's remains."
"I don't remember people talking too much about the products of conception. It's more like they have a proper burial of the memory." —Kristen Swanson
In the UK, which has in general adopted a more liberal attitude to the myriad ethical issues surrounding embryos and fetuses, the Human Tissue Authority, a government agency, has issued revised guidance in the wake of the 2014 scandal. Now anyone disposing of pregnancy remains (pre-24th week) must provide the patient with clear verbal or written information about the disposal options available (which include cremation and burial), along with providing the option for a woman to opt out of receiving the information, thereby allowing the hospital to choose a method of disposal. It also explicitly bans mixing pregnancy remains with clinical waste for joint incineration. In the UK, this only occurred after a national outcry in the light of a scandal. Meanwhile, change in America is currently being driven by occasional legislative efforts—often encouraged by personal rather than national trauma.
Even once legislation is in place, the decision to dispose of fetal remains in one way or another may not, in fact, be a choice. Marsh told VICE, "If the hospital disposes of the remains, then the hospital pays for it. If parents have a choice, now the parents have to go find a funeral home and a funeral director [at their own expense]."
Nebraska residents Stephanie Hopp and her husband Andrew found themselves in a situation much like this. Last year, Hopp suffered a miscarriage at ten weeks. Hopp told VICE, "The day before surgery, when I called, I asked what happens to the remains after. [The hospital] told me that typically they take all of the fetal remains together and every so often they cremate them. They said that they would not be able to disclose where they would put [the cremated remains] after that." When Hopp pushed for her right to control the final disposition of her own pregnancy remains, she says she was told, "'You can set up your own funeral home costs and pay everything yourself, or you can do what the hospital is offering for free.'" When her husband called around local funeral homes, they found that a cremation was going to cost them around $1,000, a prohibitive sum for many families.
This was a concern that Price was well aware of when drafting the Texas legislation. While there is no standard procedure for either hospitals or funeral homes, he explained to VICE that "many funeral homes will handle such remains very inexpensively or sometimes for free. I am very hopeful that [this] will not result in a situation where only the more economically-advantaged can take advantage of the law. I think that hospitals and funeral homes will often accommodate parents."
Indeed, the hospital eventually accommodated Stephanie Hopp's request: "It wasn't until the day of surgery that I got a call and they said, 'You know what, we worked it out with the funeral home we contract with and we will pay for everything."
For many others in America, this kind of choice—and the resulting compassion—are not the case. In Connecticut, where there is no statutory provision for parents to choose, the charity Hope After Loss has been supporting individuals grieving a pregnancy loss for almost 20 years. Since 2010 the group, in collaboration with the Kelly Ryan Foundation, has been providing funding for disposal of remains according with the wishes of parents. So far, they have helped over 60 families across Connecticut. In their experience, the cost differs "depending on how much you want what it will cost, and that really does vary from funeral home to funeral home."
There is no rule book for how to handle a miscarriage, and the situation raises difficult decisions: not least, whether and how to mourn. The most important thing, in the words of Joshua and Erica Raef, is "giving parents the right to make that choice." In Texas and 16 other states this is now a reality—but across America much more needs to be done. But even when that right is secured, it can only be the first step; situations like the Hopps' will only become more common unless hospitals ensure, by policy or by law, that a woman's ability to bury or cremate what she understands to be her baby is not contingent upon her ability to pay up.
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