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Feb 26 2018

FAQs – Perinatal Hospice, what does it mean when hospice is called in.#What #does #it #mean #when #hospice #is #called #in


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?

Can a baby’s organs be donated?

How late can a pregnancy be terminated?

What are the termination options?

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

Can perinatal palliative care be provided with pregnancy termination?

Is perinatal hospice expensive?

How many people actually do this?

How can I start a perinatal hospice/palliative care program?

Where can I find the book A Gift of Time?

What is perinatal hospice?

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?

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 ). Parents who participated in A Gift of Time also overwhelmingly expressed gratitude and peace regarding their decision to continue.

(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.)

(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 developing baby in pieces. ( WebMD , U.S. District Court testimony ) 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 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 late-term 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.)

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

However, parents who terminate their pregnancies also grieve deeply and need support for their sorrow. 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 palliative care.

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.

How many people actually do this?

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