Many people naturally view pregnancy as a kind of miracle. But just like that, a stillbirth can turn that miracle into a tragedy.
The public often confuses stillbirth — the death of a fetus after 20 weeks of pregnancy — with miscarriage — the death of a fetus before 20 weeks. Stillbirth affects about 1 percent of all pregnancies annually, or about 24,000 in the United States each year, according to the Centers for Disease Control and Prevention (CDC). Miscarriages are more common. For women who know they’re pregnant, about 10 percent to 15 percent of pregnancies end in miscarriages, according to the March of Dimes.
“There are a bunch of different things that contribute to the problem of stillbirth,” said Celeste Sheppard, MD, clinical director of ultrasound and assistant professor at The University of Texas Dell Medical School in Austin. “Is it a problem? Yes. We see it regularly, and each time the initial response from a strictly medical view is to find out what may have been the cause.”
To address that, the Texas Medical Association Committee on Reproductive, Women’s, and Perinatal Health developed new recommendations on stillbirth, which the House of Delegates approved in May.
Past TMA policy focused exclusively on encouraging the completion and reporting of a perinatal autopsy of the fetus. When that policy came up for review in 2017, the committee concluded TMA’s stance should reflect best practices set out by the American College of Obstetricians and Gynecologists (ACOG) that take a more comprehensive approach (tma.tips/ACOGStillbirth).
In place of the old policy, a new TMA report spells out two recommendations. The first aims to expand the range of postmortem testing and improve physician counseling for patients, while laying out steps for managing subsequent pregnancies for a woman who has had a stillbirth. The second encourages state agencies, insurance companies, and health associations to work together to find ways to fund stillbirth postmortem information and to improve the quality of data. (See “TMA Recommendations on Stillbirth,” page 38).
“We felt we needed to take a closer examination in a systematic way as to what the cause of stillbirth might be,” said Ian Ratner, MD, a Richardson neonatologist who worked on the policy review. “One of the tools for that is an autopsy. But there are other tools that could provide useful information.”
The committee also recognized the need to improve physician interactions with families when a stillbirth occurs.
“As we know, this can be very impactful emotionally for the family,” said Dr. Ratner, a past chair of the committee.
Stillbirth is tied to other maternal health complications as well, says Karen Swenson, MD, an Austin obstetrician-gynecologist who also worked
on the new TMA recommendations. She says stillbirth parallels maternal health because so many preventable health problems in moms — such as hypertension, diabetes, and obesity — are prime risk factors for stillbirths.
“We’re in a state where TMA really is trying to prioritize maternal health, and this fits in with that,” she said. “It fits in with taking better care of women, having a better understanding as to why women have losses, giving people better information.”
Preventable and unpreventable
Despite progress over the past 70 years, stillbirth remains a nagging health care issue in the U.S. (See “Stillbirth and Maternal Care in the United States,” right). Unfortunately, it is not a condition that is likely to be “cured” given current medical knowledge, Dr. Ratner said. Many fetuses do not develop correctly because of genetic defects or other reasons that are unknown, unpreventable, or untreatable at present.
“If you think about how complicated it is to create a new human being and all the things that can go wrong, it just makes sense that there’s going to be a certain number of mistakes … and we just have to accept that,” he said.
However, about one-quarter of U.S. stillbirths are potentially preventable, according to a February 2018 report in the journal Obstetrics & Gynecology. Researchers found that those deaths were most frequently caused by known problems with the placenta, maternal medical disorders, hypertensive conditions, and preterm birth, according to data compiled by the National Institutes of Health (NIH) Stillbirth Collaborative Research Network (SCRN).
For example, in part to prevent stillbirth, neonatologists over time have become far more aggressive about trying to save babies of lesser gestational age, Dr. Ratner says.
“Twenty years ago perhaps, there were hardly any neonatologists who would resuscitate a baby born at 24 weeks,” he said. “Today, there are some [neonatal] units that will try to save babies at 22 weeks. So a baby that might have been a stillbirth will now be born alive and be counted as either a newborn death or a survivor. How we calculate our numbers has changed a bit due to more aggressive treatment.”
A broader approach
Precisely because many stillbirths are preventable, a detailed report by TMA’s Committee on Reproductive, Women’s, and Perinatal Health recommends following ACOG’s lead by encouraging going beyond just autopsies in examining a stillbirth. This includes testing fetal tissue and studying the placenta. In some cases, autopsies are not needed, but for the most part they remain the standard in investigating any death.
However, autopsies can be difficult to obtain in many parts of Texas, Dr. Ratner says.
“As useful as the autopsy could be, perinatal autopsies can be a fairly sophisticated process, and the kind of pathologists that are thoroughly trained in doing them are limited — especially in Texas, especially in rural areas,” he said.
In 2011, a SCRN study found that fewer than 50 percent of U.S. stillbirths undergo an autopsy because of factors such as reluctance by the family and physician, and cost concerns.
In most cases, it’s up to the physician to encourage the grieving family to obtain the autopsy and other postmortem tests. However, this can be complicated by another problem the new TMA report addresses: Many doctors are not prepared to counsel families who have suddenly lost a pregnancy.
“The cheery, bustling environment of the labor and delivery setting was a painful place for parents who had had a stillbirth, and [the] well-meaning attempts of physicians to offer comfort often had the opposite effect,” said one 2012 study published in BMC Pregnancy and Childbirth.
ACOG’s guidelines call for improved patient support. For instance, physicians must avoid even the hint of assigning blame for a stillbirth, says Emily Briggs, MD, the current chair of TMA’s Committee on Reproductive, Women’s and Perinatal Health. She says several patients have come to her after bad experiences with other physicians following stillbirths.
“They felt like they were blamed, whether by the hospital staff or the physician, because of something that they did,” she said. “It may have been things the medical team didn’t mean to do. It’s just the way it came across. That is the most important part, because moms and dads will not remember all the aspects of that situation, but they will remember the taste in their mouth from each person that they worked with.”
Most women who go through a stillbirth blame themselves, which is one reason postmortem testing on the fetus is so important, Dr. Sheppard says.
“[Physicians often] don’t realize that those women can be helped by finding something to attribute the loss to,” she said.
This postmortem examination is also one of the top things ACOG recommends for managing subsequent pregnancies. However, families must understand the autopsy and other tests may not provide definitive answers, says Radek Bukowski, MD, associate chair for investigation and discovery at Dell Medical School Department of Women’s Health and an investigator for SCRN.
“There is a strong desire on the part of the parents, physician, and all providers to understand why [a stillbirth occurred], and very often we don’t know why,” he said. “Very often, in about 25 to 40 percent of stillbirths one cannot find a cause. … and most of the times when one can identify a cause it’s a constellation of different causes.”
Getting past obstacles
To get a better understanding, the TMA report also encourages physicians, state and local health agencies, health insurance companies, and others to find ways to incorporate fetal death data into quality improvement initiatives and — more crucially — to improve the quality and quantity of the data itself.
Death records in the U.S. and Texas have been widely criticized as being inaccurate. (See “Can Texas Do Death Better?” January 2018 Texas Medicine, www.texmed.org/DeathCertificates.) And the quality of postmortem information on stillbirths is no better, Dr. Ratner said.
Also, the cost of autopsies — about $1,000 to $1,500 — and other tests is a major obstacle to persuading families to request an examination of the fetus, Dr. Ratner says.
To help overcome such barriers, TMA encourages stakeholders to “explore the costs and benefits associated with the evaluation and management of stillbirths.”
In the past, hospitals routinely assumed this cost if a physician ordered an autopsy. Some hospitals, such as those in the Seton Family of Hospitals in Austin, still pick up that expense. Others are reluctant or refuse, even when physicians argue that it needs to be done.
“What we’ve found is that the reimbursement for these things can be dicey or debatable,” Dr. Ratner said. “There have to be discussions with administrators. I know in my own hospital, I’ve had to face that.”
Medicaid — which insures more than 52 percent of deliveries in Texas — and most commercial health care plans do not cover the cost of autopsies and other postmortem tests. That means in those cases a family facing a devastating loss must pay the bill for the tests or forego them.
Physicians themselves can be another major obstacle to data collection. Dr. Sheppard said there’s often a “natural disinclination to go after that information” for a variety of reasons — including reluctance to deepen the family’s grief and fear by some physicians that they might be blamed, regardless of what the tests uncover. This reluctance can ruin a family’s best chance of diagnosing what went wrong and avoiding another stillbirth.
“Unfortunately, it’s my personal experience and very likely to be a widespread experience that the opportunity is lost because the physician attributed it to something like an [umbilical] cord around the neck, which is actually rarely the cause,” Dr. Sheppard said.
Autopsies and other perinatal tests also can create unexpected administrative headaches for physicians, says Dr. Briggs, who practices family medicine and gynecology in New Braunfels. The fetal death certificate is usually issued before a pathologist does the autopsy, and tests results can take weeks or months to obtain. Updating a death certificate with new information requires a lot of time-consuming paperwork that discourages physicians from making the revisions, Dr. Briggs says.
The result, she says, is that fetal death records, the main sources of surveillance for stillbirths, are probably never updated with the correct information about cause of death.
“My hope is that people go back and correct those records, but it takes so much work,” she said. “Once we have more accurate information though, we’ll be able to study this topic much more effectively and be able to prevent it going forward.”
TMA Recommendations on Stillbirth
At TexMed 2018, the Texas Medical Association House of Delegates repealed old TMA policy focused exclusively on obtaining an autopsy in the case of stillbirth. In its place, the house adopted recommendations that TMA:
1) Promote physician awareness of the comprehensive process for evaluation and management of stillbirth, including current clinical management guidelines developed by the American College of Obstetricians and Gynecologists; and
2) Work with the relevant state health and human service agencies, public and private insurance organizations, and health care associations to explore opportunities to incorporate fetal death data into quality improvement initiatives addressing maternal and infant health, and explore the costs and benefits associated with the evaluation and management of stillbirths.
Tex Med. 2018;114(10):36-39
October 2018 Texas Medicine Contents
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