New Collaborative Shared Decision-Making Program Supports Women and Families Facing Complex Early Preterm and Peri-Viable Births

A new collaborative program between the UPMC Newborn Medicine Program and the Maternal Fetal Medicine Division at UPMC Magee-Womens Hospital provides women and families facing a potentially high-risk, high complication early preterm or peri-viable birth with a coordinated approach to care and decision-making.

The new program places emphasis on multidisciplinary and long-term care of the mother-baby dyad, understanding that the health of the mother and the health of the fetus are intertwined and symbiotic. The new program also considers the acute and long-term behavioral health and psychosocial outcomes that such traumatic pregnancies can inflict on families regardless of the outcomes. Indeed, very early preterm births or peri-viable births encompass the entire family dynamic requiring comprehensive care, planning, decision-making, and supportive care services that are mother/baby/family-centric.

Collaborating in developing and running the program are Christine E. Bishop, MD, MA, assistant professor of Pediatrics at the University of Pittsburgh School of Medicine and director of the Perinatal Supportive Care Program in the UPMC Newborn Medicine Program, and Katherine P. Himes, MD, MSCR, associate professor in the Division of Maternal-Fetal Medicine in the Department of Obstetrics, Gynecology, and Reproductive Sciences at UPMC Magee and the University of Pittsburgh School of Medicine, who specializes in clinical research to improve counseling and decision-making for women who are high risk for obstetrical complications or having a peri-viable birth.

“Peri-viable birth is, generally speaking, a rare occurrence. However, because our hospitals are tertiary care centers, coupled with the size of our obstetrical services at UPMC Magee [more than 10,000 births each year] and the levels of NICU care and expertise we bring to bear upon premature births and complex, high-risk pregnancies, we see a large number of potential peri-viable pregnancies every year,” explains Dr. Himes. “Very often in these situations, the mother is significantly ill, and we know there is a large overlap between extremely preterm deliveries and maternal morbidities, so our program routinely sees the most complex cases."

The new program, the Center for Perinatal Shared Decision-Making works to improve coordination of care between neonatal and maternal fetal medicine specialists in both the inpatient and outpatient settings, bolster communication and coordination with referring physicians and health care centers outside the UPMC system (from which significant numbers of referrals are derived), and provide intensive care, counseling and ongoing emotional and logistical support to women and families facing the complexities and medical uncertainties inherent in peri-viable or very preterm births.

“We have a subpopulation of obstetrical patients at UPMC Magee who have a fetus without an underlying congenital diagnosis or anomaly yet are at a very high risk for complications arising from a peri-viable birth before 25 weeks,” says Dr. Bishop. “In the past, these patients would not have been jointly counseled by neonatal and MFM specialists, but because of the highly complex nature of these cases and the enormity of the decisions that these patients must make in time-sensitive situations, we needed a more cohesive and collaborative approach. The program functions as a safety net to effectively identify this vulnerable population, and provide them with the crucial information they need to make informed decisions about their care and the care of their baby in a shared decision-making model with their MFM and neonatology specialists.”

This collaborative and multidisciplinary approach is one that is recommended by both the American Academy of Pediatrics and the Society for Maternal-Fetal Medicine. However, it is a challenging endeavor for many institutions to implement because of the significant expertise, facility resources, and staffing requirements necessary to make such an approach viable.

The Center for Shared Perinatal Decision Making was conceived by Dr. Himes and Dr. Bishop and supported by a 2019 UPMC Magee Medical Staff Grant. This grant allowed the team to begin the process of understanding the referral base, testing referral and consultation procedures, developing education for providers and obstetrical and neonatal teams in both inpatient and outpatient clinics, and ultimately developing a process of leveraging the strengths of the neonatal and maternal-fetal medicine programs at UPMC to create the multidisciplinary program.

"I will give you an example of the type cases our program seeks to identify and intervene in,” says Dr. Himes. “If, for example, a person who is pregnant and whose water breaks at 18 or 19 weeks is referred or presents to the hospital, what does they do? The fetus cannot survive birth at that point in time, even with the most advanced NICU care currently available. Do they try to continue the pregnancy until the earliest viable point at 22 weeks or beyond? By doing so, the mother is at risk for complications, such as infection or bleeding. Will the fetus have enough lung development even at 28 or 30 weeks to survive after such an experience? This is not something we can definitively know at present, so providing consultation on such matters is one of acknowledging uncertainty and helping the mother and family find the right path to achieve their goals of care. Often, in cases of very early preterm or peri-viable births, we are dealing with a person who has existing medical complications, like hypertensive disorders, that further compound their own risk and that of the fetus if they choose to continue the pregnancy. The complexity inherent in these scenarios and the level of decision-making it requires are what we deal with daily. The best way to care for these individuals is through a coordinated and planned approach that gives the mother and family the time to prepare and decide how best to proceed.”

One of the fundamental needs identified, through prior research conducted by Dr. Himes with this patient population, and through discussions with stakeholders during the program development process, is the need for long-term, high-quality bereavement support for families who experience a death.

“We conducted a needs assessment as part of our grant process and identified a need for ongoing bereavement support for families who have experienced a fetal or neonatal loss that extends beyond what is provided in the hospital. This is one area we will concentrate on developing further as the program progresses,” says Dr. Bishop.

Another important aspect of the program is that women who experience a very early preterm birth, or a peri-viable birth, regardless of the outcome, are at considerable risk for a subsequent peri-viable birth. As Dr. Himes and Dr. Bishop explain, caring for these families with subsequent pregnancies is of great importance and will be a focus of the program as it expands over time.

"So many of these women have experienced an obstetrical trauma, and many carry a post-traumatic stress disorder-like symptomatology with them. Returning to the hospital in which they may have lost a baby, or even if they had a good outcome, the stress and trauma of the experience weighs heavily on them,” says Dr. Himes. “Attending to these issues, recognizing the importance of previous experiences and how they may influence a future pregnancy and outcomes is significant. It is an area we will focus much effort on in the future."