Evolving reproductive health laws are likely to have a significant impact on the demand for and provision of perinatal hospice care.
Perinatal hospice care is provided to families who receive a prenatal diagnosis indicating a high risk of death before or shortly after birth and choose to continue the pregnancy. This care includes emotional, spiritual, and medical support for families as they navigate the complexities of a terminal illness. Perinatal hospice providers work closely with medical professionals in neonatal intensive care units (NICUs) and reproductive health settings.
Emily Kane, clinical program manager at Torrey Fields, said the changes taking place around reproductive health law are changing the prospects for the future of perinatal hospice services and how those professionals are working with others in the continuum of care. & Associates (TFA), a value-based healthcare consulting firm, says it's contributing to growing concerns about how to work with professionals to reach families in need. Kane is also a registered nurse with experience in neonatal care and reproductive health law research.
Laws affecting reproductive health conditions can affect perinatal hospice utilization in many complex ways, from widening access disparities to increasing demand for care, Cain said. did.
“It was really eye-opening to see how different the laws are from state to state and how much that impacts the care I can provide to my patients,” Cain told Hospice News. “I began to see how inequitable care was being provided, especially for people in the NICU. Some of the most restrictive abortion laws after the overturn of Roe v. Wade were and the social determinants of access to certain reproductive services. These restrictive reproductive laws are sure to increase the demand for perinatal hospice services, and to protect the lives of fetuses at the limit of their lives. More families need to look for alternatives when faced with a diagnosis.”
laws are fluid
In June 2002, the U.S. Supreme Court overturned Roe v. Wade, which had established a legal right to abortion since 1973. A 1973 ruling states that abortion is an option until about 24 to 28 weeks into pregnancy.
Since then, several states have enacted laws related to reproductive health. As of January 8, an estimated 21 states had passed abortion bans or other restrictive policies related to reproductive health, according to the latest data available from the New York Times tracker.
“It is critical that the law covers all levels of perinatal hospice services that require them,” Cain said. “These restrictive abortion states have requirements that mandate counseling when patients are looking for alternative methods of care, so it's going to be difficult to cross a very ethical line at some point.” We are crossing a dangerous line in terms of rates.”
It was very eye-opening for me to see how the laws vary from state to state and how much that impacts the care that can be provided to patients… It is very important to be able to cover the services that require this care.
— Emily Kane, Torrey Fields & Associates (TFA) Clinical Program Manager
Evolving reproductive laws can also impact the type of emotional, spiritual, or grief care families need, said Catherine Nichols, a pediatric nurse with the Community PedsCare program. The program was started in 2000 by Community Hospice & Palliative Care, an affiliate of Florida-based Alivia Care Inc. It can also have financial implications.
For example, under Florida law, after 20 weeks of pregnancy, families are responsible for the financial costs of fetal remains, including burial and funeral services.
These costs can be compounded by medical bills, which can further complicate the bereavement process, Nichols said. Nichols said families often need a perinatal hospice provider who can provide financial, practical, emotional and grief support resources.
“We have a program called Angels for Allison that really helps families with life-threatening diagnoses,” Nichols told Hospice News. “With our program, we also have financial support that doesn't charge families. A loss is a loss no matter how you look at it. And we have a multidisciplinary hospice team to help them work through that feeling of grief and loss. These people are at high risk of postpartum depression and therefore receive many visits from the end of their lives onwards, meaning they are provided with funerals and financial support. [and] As well as emotional, coping and bereavement support. [parent], but other family members too. ”
Growing needs
Nichols said coordinating care with neonatologists, obstetricians and other pediatric specialists is an important part of providing quality perinatal hospice services. Providers in these settings are often the source of referrals to perinatal hospice and are an important part of the access equation, she explained.
According to Cheryl Mele, advanced practice neonatal and pediatric nurse with the Community PedsCare program, understanding local reproductive health laws is necessary to align medical needs and care goals. She noted that understanding these laws can help health care providers ensure targeted care and coordinated services, as well as strengthen referral relationships.
Going forward, the demand for perinatal hospice services is likely to increase as the need for collaborative care increases, Mele said.
“Regardless of the law, we need to expand perinatal hospice nationwide,” Mele told Hospice News. “I see value in this program that allows us to seamlessly introduce other services and supports that we can provide to families, especially in the NICU and hospital-based palliative perinatal settings. We assist them in different scenarios and support their journey alongside neonatology and other disciplines. [pregnancy] Even though it ends in the womb, it still means something to that family, and they still want to honor that memory. ”
No matter what the law is, we need to expand perinatal hospice nationwide. I see value in this program that allows for a seamless introduction of other services and supports that can be provided to the family, especially in his NICU and hospital-based palliative perinatal setting.
— Cheryl Mele, Advanced Neonatal and Pediatric Nurse Practitioner with the Community PedsCare Program
