Frequently Asked Questions
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 Gynaecologists 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.
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, 2003; Journal 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 Gynaecologists. 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.
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.
Can a baby's organs be donated?
Sometimes, although it is rare that a baby meets the criteria necessary to donate organs for transplantation. Donation is regulated by specific medical, ethical, and legal requirements, including the baby’s size and other considerations. Tissue donation and donation for research is more likely to be an option for babies and is often confused with organ donation for transplant. However, unless researchers are studying a particular condition, fetal anomalies often disqualify donation because many fetal-tissue researchers seek to study healthy tissue. Regarding organ donation and anencephaly, a baby who is alive with this condition still has some brain function and does not usually meet the criteria for brain death. (See this position statement from the Canadian Paediatric Society.) Any type of donation requires recovery to take place within a specific time frame after death, which means that a family must relinquish their baby’s body for surgery, but families can still have the opportunity to see and hold the baby after the surgery takes place. (See this video, also available in Spanish, depicting one family’s respectful experience.) Some families have found deep meaning in having their baby be a donor. If you are interested in exploring this option, see the organ donation resources on the Resources for parents page. Cord blood donation is also an option. Parents are sometimes deeply disappointed to learn that their baby is not a candidate to be a donor. Remember that your baby's life has intrinsic value, whether he or she is a donor or not. Your baby has worth and purpose because your baby is a human being. Nothing more is required.
How late can a pregnancy be terminated?
This varies by locale and provider. In the United States, under the U.S. Supreme Court's 1973 Roe v. Wade and 1992 Planned Parenthood v. Casey rulings, states are allowed (but not required) to restrict abortion after a developing baby could survive outside the womb. With medical advances, viability has been pushed earlier than in 1973 and is now generally considered to be possible around 24 weeks of pregnancy, although a recent study published in the New England Journal of Medicine found that survival is possible as early as 22 weeks of pregnancy. According to the Guttmacher Institute, 43 states have enacted some time limits, generally after 20–24 weeks of pregnancy or viability, with exceptions to protect a women's life or health; seven states and the District of Columbia have no time limits. (Some laws measure from the approximate date of fertilization, so a ban on abortion after 20 weeks post-fertilization translates to 22 weeks of pregnancy under standard medical dating.) Some state abortion laws specifically allow exceptions for severe fetal anomalies. And some providers contend that a fetus with severe problems technically never reaches viability; therefore they claim that in these cases Roe v. Wade implicitly permits abortion at any time. The U.S. Supreme Court also has defined maternal health broadly to include "all factors — physical, emotional, psychological, familial, and the woman's age — relevant to the wellbeing of the patient." (Doe v. Bolton) At least two providers in states without time limits perform abortions on healthy mothers with healthy fetuses late in pregnancy (news stories here and here) as well as abortions for fetal anomalies as late as 39 weeks. (A full-term pregnancy typically lasts 40 weeks.)
What are the termination options?
(Note: If you have terminated a pregnancy or are not ready to read details, please be aware that this section includes straightforward information about termination procedures from medical sources. This information is offered here to empower parents to make informed decisions, especially if they would be distressed to learn termination details after the fact.)
Depending on the stage of pregnancy and provider preferences, the typical options are surgical abortion or premature induction of labor. Many conditions are diagnosed at a routine ultrasound at around 20 weeks of pregnancy. In the second trimester, through about 24 weeks of pregnancy, the most common abortion method in the U.S. is dilation and evacuation, also called D&E, in which surgical instruments are used to remove the fetus in pieces. (WebMD, U.S. District Court testimony) The process can take up to three days. Another procedure used in the mid-second trimester or in the third trimester is dilation and extraction, or D&X, also called intact D&E or “partial birth” abortion, in which the developing baby is removed mostly intact except for collapsing the head. (National Abortion Federation) This method is banned in the U.S. for use on a fetus who is still alive, so some clinics that still perform this procedure or other variations administer a lethal injection of potassium chloride or an off-label overdose of digoxin into the developing baby’s heart first. (Society of Family Planning, Contraception, American Journal of Public Health) Although some providers tell parents the purpose of the injection is to prevent the baby from feeling pain during the removal process, whether the injection itself causes pain has not been studied. (The Humane Society of the United States considers the use of potassium chloride for euthanizing animals to be "inhumane" and says intracardiac heart-stick injections are "excruciatingly painful" and should never be used unless each individual animal is tested beforehand and proven to be fully unconscious with no reflex response whatsoever. In addition, death penalty opponents such as Amnesty International object to using potassium chloride for executions because it can cause "excruciating pain.") According to the American Society of Anesthesiologists, anesthesia given to a mother provides "no to little" pain relief for her developing baby. Alternatively, some providers cut the umbilical cord in utero to cause death by blood loss and lack of oxygen before beginning the removal process. (The Humane Society also considers exsanguination to be inhumane for euthanizing animals.)
An induction abortion in a hospital — not an outpatient abortion clinic, where the process can last up to four days — is much closer to a normal birth experience for the mother, although it can be lengthy and cause complications such as retained placenta because the mother's body is not ready to go into labor. Some providers also administer a lethal injection for feticide before the induction, sometimes several days before delivery or in an outpatient setting, to avoid legal and ethical obligations associated with a live birth or in some cases to circumvent hospital ethics policies or state laws regarding late-term abortion.
For parents who are concerned about the baby's potential suffering and about treating the baby with dignity, details about the injection and procedures to remove the baby's body can be disturbing but important to their decision-making.
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.
How many people actually do this?
No national or international statistics are available. One early article, written before the spread of perinatal hospice and palliative care, estimated that about 20 percent of parents chose to continue their pregnancies — even in the absence of support. (Calhoun 2000) But the percentages increase dramatically when parents are offered perinatal hospice support and reassured that they and their baby will receive specialized care. In one British study, when parents were offered perinatal hospice as an option, 40 percent chose to continue. (Breeze 2007) In a U.S. study, when parents were given the option of perinatal hospice, the number rose to 75 percent. (D'Almeida 2006) And in another U.S. study, the number who chose perinatal hospice was 85 percent. (Calhoun 2003) A recent study in France found that from 2006 to 2014 the number of parents who continued pregnancies despite a severe prenatal diagnosis rose 135 percent (Bourdens et al 2017). Even if the overall numbers are small, these parents need and deserve best-practices care.
How can I support the field of perinatal hospice & palliative care?
Although this care is not expensive, some costs for staff time and training are involved. There are many ways to help, including helping a program to grow, establishing funds to assist families in need, and funding education and training for health professionals. Many perinatal hospice & palliative care programs operate on shoestring hospital budgets or depend on grants and donations. If you would like to support this care financially, consider contacting one of the existing programs — or a hospital or hospice that hasn't yet created a program — to ask if you can help with any needs, such as donating to a hospital foundation account earmarked specifically for perinatal hospice & palliative care or providing funding for other specific needs (some ideas listed here). Raising awareness is also a way of supporting this care. Sometimes parents aren't given information about this option at the time of their baby's diagnosis and learn about it only because someone had previously shared information on social media. Much shareable information is on this website and also at facebook.com/perinatalhospice and on Twitter under @perinatalhospic. (An easily shareable tweet is below.)
How can I start a perinatal hospice & palliative care program?
Many programs have started with the inspiration of one person — perhaps a caregiver who has seen firsthand the need for this kind of support, or perhaps a parent who lived the experience and wants to ensure that other parents don't walk this path alone. Most programs are based in hospitals or clinics, some are hospice-based, and a few are faith-based or independent. See the list of programs on this site; many have websites or brochures that may be helpful. See also the Resources for caregivers page for many professional resources and journal articles. One professional how-to resource is the Perinatal Palliative Care Program Toolkit from Gundersen Health System's Resolve Through Sharing/Bereavement Services, which also includes perinatal palliative care in its perinatal death bereavement training.
Newly published books packed with information for medical professionals are the Handbook of Perinatal and Neonatal Palliative Care (Springer, 2020), Perinatal Palliative Care: A Clinical Guide (Springer, 2020), and Neonatal Palliative Care for Nurses (Springer, 2020). Other professional resources include "Building an interprofessional perinatal palliative care team," published in NeoReviews, and the Perinatal Palliative Care and End-of-Life Web-Based Toolkit from the Texas Pediatric Society Committee on Fetus and Newborn. See also the framework for perinatal palliative care published by the British Association of Perinatal Medicine and its accompanying report. Online education related to perinatal hospice and palliative care is available from the National Hospice and Palliative Care Organization, Gundersen Health System, the End-of-Life Nursing Education Consortium, and perinatal loss certification from the Hospice and Palliative Nurses Association.
Some institutions have found it helpful to introduce the idea — or announce a new program — with a grand rounds or conference keynote. (Visit here for a list of Amy Kuebelbeck's presentations.) If you are a caregiver interested in networking and sharing information, you also are welcome to join the private perinatal hospice e-mail list. Feel free also to follow perinatal hospice and palliative care news on Facebook and Twitter.