Perinatal Hospice- When the news isn’t good for your baby.

Perinatal hospice

When the Doctor says “termination”, do I still have options?

Concerning ultrasound

Whether your pregnancy was planned and anticipated or came as a total shock, we all hope for the best outcome for our child. No one wants to hear the phrases “fetal demise”, “syndrome”, “incompatible with life”, “genetic problem” …As a parent on the receiving end of this heart-breaking news you do still have options. Perinatal Hospice is there to come along beside you as you walk this unexpected road to parenthood.

The article below comes from PerinatalHospice.org and answers many of the questions parents facing a negative diagnosis for their unborn child might have.

  • What is perinatal hospice?
  • Where can parents find perinatal hospice and palliative care support?
  • What if there isn’t a program nearby?
  • Doesn’t hospice mean giving up and losing hope?
  • Which conditions are appropriate for perinatal hospice?
  • What if the doctor says my baby is incompatible with life?
  • What if the diagnosis is wrong?
  • Why would anyone continue a pregnancy like this?
  • Isn’t continuing the pregnancy harmful to the mother’s mental health?
  • What about the mother’s physical health?
  • Won’t the baby suffer?
  • What happens after the baby is born?
  • Isn’t perinatal hospice mostly for people who oppose abortion?
  • Does perinatal hospice & palliative care include pregnancy termination?
  • Is perinatal hospice expensive?

What is perinatal hospice?

Perinatal hospice and palliative care is an innovative and compassionate model of support for parents who choose to continue their pregnancies following a prenatal diagnosis indicating that their baby has a life-limiting condition and might die before or shortly after birth. As prenatal testing continues to advance, more families are finding themselves in this heartbreaking situation. Perinatal (perinatal means around the time of birth) hospice incorporates the philosophy and expertise of hospice and palliative care into the care of this new population of patients. This specialized support is provided from the time of diagnosis through the baby’s birth and death. Perinatal palliative care helps parents embrace whatever life their baby might be able to have, before and after birth.

This support begins at the time of diagnosis, not just after the baby is born. It can be thought of as “hospice in the womb” (including birth planning, emotional support for the family, and preliminary medical decision-making before the baby is born) as well as more traditional hospice and palliative care at home after birth (if the baby lives longer than a few minutes or hours). It includes essential newborn care such as warmth, comfort, and nutrition. Palliative care can also include medical treatments intended to improve the baby’s life. This approach supports families through the rest of the pregnancy, through decision-making before and after birth, and through their grief. Perinatal hospice also enables families to make meaningful plans for the baby’s life, birth, and death, honoring the baby as well as the baby’s family.

Perinatal hospice is not a place. It is a model of care, an extra layer of support that can easily be incorporated into standard pregnancy and birth care. Ideally, it is a comprehensive and multidisciplinary team approach that can include obstetricians, perinatologists, labor & delivery nurses, neonatologists, NICU staff, clergy, and social workers, as well as genetic counselors, midwives, traditional hospice and palliative care professionals, and others. The concept was first proposed in the medical literature in 1997 and has now grown to more than 300 programs worldwide. Many articles have been published in major journals such as the American Journal of Obstetrics and Gynecology and the Journal of Reproductive Medicine. A recent study of perinatal medical professionals in France found that the vast majority, well over 90 percent, support offering perinatal palliative care as a regular option. And a 2019 committee opinion on perinatal palliative care from American College of Obstetricians and Gynecologists, also endorsed by the Society for Maternal-Fetal Medicine and American Academy of Pediatrics, encourages health care providers and institutions to develop PPC programs. Perinatal hospice is a beautiful and practical response to one of the most heartbreaking challenges of prenatal testing.

Where can parents find perinatal hospice support?

See the list of perinatal hospice programs, or ask your caregivers. (If your caregivers don’t yet know about perinatal hospice, show them this website and help inform them!)

What if there isn’t a program nearby?

Even without a formal program, you can still take a perinatal hospice approach with your pregnancy. You will need to make decisions and advocate for your needs and the needs of your baby, which can be challenging when you are overwhelmed with sadness. You might need to educate your health care team about perinatal hospice. Ideally they will be supportive and willing to learn; sometimes it’s necessary to change providers to find someone who is more open to helping you. Even if you have to take the lead, you can be energized by knowing that you are parenting your baby in ways that will honor this child as well as your role as parents. See the resources for parents for many resources about birth planning and ways to celebrate your baby. (For one family’s story of traveling this path without a formal program, see Waiting with Gabriel.) Perinatal hospice is not a place. It is a model of care and an extra layer of support. Although having an established perinatal palliative care team is ideal, even without one it’s possible to create a perinatal hospice experience for you and your baby.

Doesn’t hospice mean giving up and losing hope?

No! Hospice and palliative care are about providing a different kind of medical care, with different kinds of hope. This approach is about providing comfort and dignity both for the person who is terminally ill and for the family and extended circle. Hospice can be a frightening word, but it doesn’t mean giving up on your baby. A core principle of hospice and palliative care is to not intentionally hasten death. (World Health Organization) Palliative care can be provided along with medical intervention to improve the baby’s life, sometimes even including surgery, if the intervention would be of benefit and not unnecessarily burdensome to the baby. Babies with the same condition can vary greatly in their ability to sustain life. A few babies surprise everyone with their strength and are able to “graduate” from end-of-life care and live longer than expected. Hospice and palliative care follow the baby’s lead, honoring the baby’s life.

For a baby who is expected to die, parents’ original wishes and dreams for their child’s long life are shattered. But their hopes can change direction: for the baby to be treated with dignity, for the baby to be protected until death comes naturally, for the baby’s life to be filled with love. Parents who have chosen perinatal hospice have said that this kind of care helped their hopes be fulfilled.

Which conditions are appropriate for perinatal hospice?

Parents choose perinatal hospice and palliative care for a wide range of life-limiting conditions including anencephaly, Trisomy 13 (Patau syndrome), Trisomy 18 (Edwards syndrome), bilateral renal agenesis (Potter’s syndrome), severe heart defects, congenital diaphragmatic hernia, and others.

What if the doctor says my baby is incompatible with life?

Terms such as “incompatible with life” and “fatal fetal abnormalities” are not defined medical terms. Some doctors use these phrases to summarize what they think the outcome of your baby’s diagnosis will be. You can ask for more details: Does the doctor expect that your baby will die before birth or sometime afterward — minutes, hours, days, weeks, months? Based on what evidence? In cases of Trisomy 13 or Trisomy 18, a new study published in the Journal of the American Medical Association found that some babies with these conditions can live significantly longer than doctors have assumed. These doctors say using the term “lethal” can be a subjective judgment about quality of life and can become a self-fulfilling prophecy. These doctors recommend avoiding the term “lethal” and assessing a baby’s individual prognosis instead. This doctor with the Royal College of Obstetricians and Gynecologists told the BBC that “fatal foetal abnormality” is not a medical term, explaining: “No doctor knows exactly when a fetus is going to die. … We’re all fatal. A life of a few minutes can be as perfect as a life of 60 years.

What if the diagnosis is wrong?

Prenatal diagnosis is not perfect. At birth, some babies’ conditions are less or more severe than predicted. Sometimes the diagnosis was ambiguous all along. On rare occasions a diagnosis was wrong and the baby is perfectly healthy. Perinatal hospice and palliative care encompasses all these scenarios. A baby might be born stronger than expected and seeming to say that she’s able to fight to stay awhile longer. In this case, doctors may be able to offer a better prognosis with short-term aggressive medical intervention, and parents may decide that this is warranted. Another baby might be born weaker and sicker than expected, seeming to say more urgently that all he needs is comfort and love, and parents can change their plans accordingly. Decisions and plans can always be adjusted as the baby makes his or her needs known. You can let your baby lead you.

Why would anyone continue a pregnancy like this?

Some question why anyone would continue a pregnancy with a baby who has a condition labeled “incompatible with life.” For some parents, terminating the pregnancy is unthinkable. Others may consider it, unsure of which path would be the more bearable or compassionate choice. Fundamentally, choosing to continue is a parenting decision that honors the baby as well as the parents. It allows you to parent your baby as long as possible and to protect your child for as long as he or she is able to live. Ultimately, it allows you to give your baby — and yourself — the full measure of your baby’s life and the gift of a peaceful, natural goodbye. Continuing the pregnancy is not about passively waiting for death. It is about actively embracing the brief, shining moment of this little life.

Mom looking at ultrasound

Isn’t continuing the pregnancy harmful to the mother’s mental health?

In an era of evidence-based medicine, it’s important to note that there is no research to support the popular assumption that terminating a pregnancy with fetal anomalies is easier on the mother psychologically. In fact, research to date suggests the opposite. Research suggests that women who terminate for fetal anomalies experience grief as intense as that of parents experiencing a spontaneous death of a baby (Obstetrics and Gynecology, 1993) and that aborting a wanted baby with congenital defects can be a “traumatic event … which entails the risk of severe and complicated grieving.” (Journal of Psychosomatic Obstetrics and Gynaecology, 2004) One longitudinal study found that after 16 months, 20 percent of women who terminated for fetal anomalies “showed pathological levels of post-traumatic stress.” (American Journal of Obstetrics & Gynecology, 2009) Another study found that 14 months after terminating for fetal anomalies, nearly 17 percent of women were diagnosed with a psychiatric disorder such as post-traumatic stress, anxiety, or depression. (Archives of Women’s Mental Health, 2009) An early British study found that “persistent adverse psychological and social reactions may be much commoner in patients undergoing termination of pregnancy for genetic rather than ‘social’ indications.” (British Medical Journal, 1981) And a new Swedish study found that women who terminate for fetal anomalies experience “physical and emotional pain, with psychosocial and reproductive consequences.” (Midwifery Journal, 2016) Termination is not a shortcut through grief.

 

The logical next question is how these parents’ emotional outcomes compare with parents who continue their pregnancies. A recent study in the journal Prenatal Diagnosis concluded this: “Women who terminated [following prenatal diagnosis of a lethal fetal anomaly] reported significantly more despair, avoidance, and depression than women who continued the pregnancy. … There appears to be a psychological benefit to women to continue the pregnancy following a lethal fetal diagnosis.” The field of perinatal palliative care is relatively new and more research is needed, but evidence is accumulating about those who continue with good support from their caregivers. Parental responses to perinatal hospice are “overwhelmingly positive” (Frontiers in Fetal Health, 2000), and parents report being emotionally and spiritually prepared for their infant’s death and feeling “a sense of gratitude and peace surrounding the brief life of their child” (Sumner, Textbook of Palliative Nursing 2001). According to one literature review, “The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option” (Journal of Obstetric, Gynecologic, and Neonatal Nursing, 2013). In a recent study of 405 parents who continued their pregnancies following a life-limiting prenatal diagnosis, an overwhelming 97.5 percent of parents reported that they did not regret their decision. (Journal of Clinical Ethics, 2018). Parents who participated in A Gift of Time also overwhelmingly expressed gratitude and peace regarding their decision to continue.

What about the mother’s physical health?

Many life-limiting conditions in the baby do not pose any greater physical risk to you than the normal risks of pregnancy. Some providers contend that it’s always safer not to be pregnant than to be pregnant. But once you’re already pregnant, the relevant question is whether it’s safer to continue the pregnancy or to artificially end it. It’s important to note that abortion itself poses maternal physical risks, which increase as a pregnancy progresses. “The risk of death associated with abortion increases with the length of pregnancy,” according to the Guttmacher Institute. Many fetal anomalies are diagnosed at an ultrasound around 20 weeks of pregnancy. For comparison, the maternity mortality rate in the U.S. is estimated at 8.8 per 1000,000 live births (Obstetrics & Gynecology, 2012), and the mortality rate from abortions at 21 weeks or later is estimated to be nearly identical, 8.9 per 100,000 (Obstetrics & Gynecology, 2004).

If there are possible maternal health effects related to the baby’s condition, physicians are trained to watch for complications and treat them if they do arise. It is rare for a pregnancy to pose a direct threat to a woman’s life. In those cases, maternal-fetal medicine specialists are trained to try to save both patients. If a threat to the mother is so severe that the baby must be delivered too prematurely to survive, the mother can receive urgent medical care while the baby can still be provided with comfort and treated with respect. In studies of mothers who continued their pregnancies with babies who had life-limiting conditions, there were no significant maternal physical complications. (Journal of Reproductive Medicine, 2003Journal of American Physicians and Surgeons, 2006) Specifically regarding anencephaly, a published study of more than 200 mothers who continued their pregnancies concluded: “Continuation of pregnancy after a diagnosis of anencephaly is medically safe and should be considered as an option.”

Future pregnancies may be another consideration. Multiple studies suggest that surgical abortion is associated with “significantly increased risks” of premature birth and low birthweight in subsequent pregnancies, perhaps because of cervical damage and scarring, according to a meta-analysis published in 2009 in BJOG, the journal of the Royal College of Obstetricians and Gynecologists. Two other recent meta-analyses (published in the European Society of Human Reproduction and Embryology, 2015 and the American Journal of Obstetrics & Gynecology, 2016) had similar findings.

(Of course, this informational website is not a substitute for medical advice from your doctor. If you are currently pregnant, ask your caregivers for specifics about your individual situation. Because many caregivers have had little to no firsthand experience with some of these rare conditions, you may be able to help provide them with more information too.)

Won’t the baby suffer?

A major concern for parents is whether the baby will suffer during pregnancy or after birth. Many life-limiting conditions are not inherently uncomfortable for the baby. (Read A Gift of Time for parents’ poignant descriptions of their baby’s peaceful life and death.) As one neonatologist who has cared for more than 200 perinatal hospice babies has stated, “The vast majority of my experience is the baby becomes very quiet, stops breathing, and then the heart stops. … the baby himself or herself has a peaceful experience.” In a survey of parents whose babies were treated by a standardized neonatal comfort care program, parents reported that their baby experienced comfort. (Journal of Perinatology, 2018) If pain is a possibility, it can be treated aggressively and effectively, and some pain can be avoided altogether by careful decisions about medical interventions that you want or don’t want for your baby. A terminally ill baby does not have to be rushed to intensive care or surgery or a ventilator. You can even decline minor routine procedures such as standard newborn shots and tests that would cause unnecessary discomfort. Instead you can provide palliative care, which has become a medical subspecialty in its own right (see the World Health Organization definition of palliative care). You can envelop your baby in comfort and love.

Peaceful baby in hospital

What happens after the baby is born?

Every baby’s story is individual, of course. Many perinatal hospice babies stay with their parents in their hospital room after birth, being tenderly held and bathed and loved until the baby’s life comes to a gentle and natural end. Some parents choose to make their baby’s life a joyful time, while other parents prefer to keep this time quieter and more peaceful. Some invite extended family and friends to meet the baby, while others prefer the time after birth to be more intimate. Sometimes further medical evaluation is needed to confirm a diagnosis or determine whether medical intervention would be beneficial for the baby. Perinatal palliative care also meets babies’ basic needs such as warmth and nutrition. Some babies are able to breastfeed or take a bottle; others may be able to drink milk from a syringe or dropper; others may be comforted simply by a few drops of milk offered on a pacifier or a parent’s finger. If the baby has died before birth, parents may spend as much time with their baby as they wish. Many choose to take photographs and collect footprints and other keepsakes, with the assistance of hospital staff. (Helping families create memories during this fleeting time is considered best-practices standard of care in U.S. hospitals.) For babies who live longer, parents may care for their baby at home, with the support of hospice and palliative care professionals if needed. For many stories of parents’ experiences saying hello and goodbye, see A Gift of Time.

Isn’t perinatal hospice mostly for people who oppose abortion?

Perinatal hospice appeals to people all along the spectrum of opinion on abortion. Parents who choose to continue their pregnancies hold varying opinions on the issue of abortion; many say their decision to continue is a parenting decision, not a political one. People who oppose abortion can support perinatal hospice as a way to honor a baby whose life has intrinsic value, no matter how brief or “imperfect.” People who support legalized abortion can also support perinatal hospice as a rational, healing, affirming choice that should be offered to parents as an alternative to terminating the pregnancy. Perinatal hospice transcends the abortion debate.

Does perinatal hospice & palliative care include pregnancy termination?

No. These are fundamentally different choices. A core principle of hospice and palliative care is to not actively hasten death. (See this World Health Organization definition.) Therefore abortion, feticide, selective reduction, and withholding nutrition and hydration from a baby who is capable of being fed cannot be considered part of perinatal palliative care. Palliative care is a model of medical care for a seriously ill patient — in this case, the baby — as well as support for the family. Perinatal palliative care supports families as they continue their pregnancies and allow their baby’s life to unfold.

However, parents who terminate their pregnancies also grieve deeply and need support for their sorrow. As caregivers see how perinatal palliative care benefits their patients, some observe that patients who abort their pregnancies are experiencing comparatively more emotional difficulty, and some have asked whether perinatal palliative care can also be incorporated into pregnancy termination. Some best practices for perinatal bereavement care — a key component of perinatal hospice and palliative care — can be incorporated into the emotional care of parents who choose to terminate, depending on the abortion method used. For example, well-established best practices for perinatal bereavement care include encouraging parents to see and hold the baby immediately after delivery; helping parents collect keepsakes such as footprints and photographs; and treating the baby’s body with dignity, including a respectful burial or cremation rather than incineration or disposal as medical waste. Those may be possible for parents who terminate via premature induction in a hospital. But it’s important to note that some well-established elements of good perinatal bereavement care (such as photographs, the opportunity to hold the baby, and keepsakes such as footprints) may not be possible when aborting via D&E, D&X, or variations of those procedures. Some form of bereavement care for heartbroken parents who choose to end their pregnancies is possible and needed, but it cannot be called perinatal hospice or perinatal palliative care.

Is perinatal hospice expensive?

No. As explained above (“What happens after the baby is born?”), many perinatal hospice babies stay with their parents in their hospital room after birth, being tenderly held and bathed and loved until the baby’s life comes to a gentle and natural end. This costs nothing more than a usual delivery. When a baby is diagnosed prenatally with a life-limiting condition, extra support before birth includes meetings for birth planning and advance care planning with people trained to engage in these discussions, usually provided by hospitals at no additional cost to parents. At least one insurance company specifically covers perinatal palliative care. Even without specific coverage, birth planning can be included in prenatal care, and care of the baby after delivery is part of newborn care. Many hospitals already have staff trained in best-practices bereavement care for unexpected miscarriage, stillbirth, and neonatal death. Additional staff training for supporting parents during pregnancy can be obtained at a modest cost. Prenatal birth planning and advance care planning can also be facilitated at minimal cost by external hospice staff or an independent perinatal hospice support organization, in consultation with the mother’s maternity team. This external support is typically provided at no charge to parents.

For babies who live longer than a few hours or days after birth, parents may care for their baby at home, with the support of hospice and palliative care professionals if needed. Medical care or hospice care for the baby after birth is covered by ordinary insurance or medical assistance available to any baby. Depending on the baby’s condition and options for treatment, more medical intervention may be warranted. If parents have chosen to provide comfort care for the baby without a trial of treatment, costs may actually be less than the delivery of a healthy newborn and certainly less than the delivery of a baby who has a condition that requires intensive treatment.

Some skeptics of perinatal hospice raise cost as a concern. It’s important to note that the baby has to come out somehow, and a second- or third-trimester abortion in an outpatient clinic can be significantly more expensive than the cost of a hospital birth. Some abortion providers charge more than $10,000 and as much as $25,000 (with prices increasing by weeks of pregnancy) and require parents to pay in full out-of-pocket up front. One provider charges $10,000 for the lethal injection alone. Heartbroken parents are still left with their raw grief. Even if perinatal hospice were to cost more, many parents say the value of treating their child with dignity, and the healing peace that comes from protecting and caring for their baby as long as he or she is able to live, cannot be measured in dollars and cents.

Perinatal Hospice is not an easy choice, and it is a choice most parents never want to make. But it is a loving choice for both you and your child. It is a choice that allows your child to live their life to the fullest capacity, gives your heart a chance to bond, grieve, and heal in a healthy way. And it is a choice that both you and your child can live with even when that life is shorter than we had imagined it would be.

Our nurse here at Spero is happy to walk you through the journey of Perinatal Hospice if you are facing a hard diagnosis for your baby. Give us a call today to schedule a counselling session 810.985.HOPE.