What is palliative care?
Palliative is a term that implies treatment that provides relief but does not cure a condition. Palliative care is related to end-of-life issues and comfort care. It does not mean we are withdrawing care, rather we are refocusing the goals of our care. The goal becomes the best quality of life for patients and their families. Every year in the United States, 15,000 babies are born for whom there is no medical treatment. They have a condition or conditions that are incompatible with a prolonged life.
There are a variety of reasons a baby may not survive.
- Every year thousands of babies are born with birth defects. These are commonly referred to as congenital anomalies. Congenital means present at birth, and anomaly is an abnormality or variation from the usual. Some of these congenital anomalies will have no treatment or cure despite all of our medical advances. Some congenital anomalies may be the result of a chromosomal disorder. In the case of many chromosomal diagnoses, there is limited knowledge of effective treatments. Also, there are thousands of chromosomal syndromes that are extremely rare but could be the causative reason for an anomaly.
A congenital anomaly or chromosomal disorder that has no treatment is referred to as "lethal." Many of these lethal anomalies may be diagnosed prenatally. Some families may elect to terminate a pregnancy when there is no hope that the fetus will survive. However, for others, termination is not an option they want to pursue. They prefer to continue the pregnancy but also do not want aggressive treatment at birth. For these families, palliative care may be offered as an alternative treatment option.
- The baby can be born at the limits of viability. Even though our neonatal care units in the United States have come a long way in the treatment of the premature infant, there are still limits to survival. The more immature they are, the harder it is for them to survive. Palliative care may be an alternative treatment for a premature baby.
- The other category for which palliative care may be an option is the newborn for whom aggressive treatment is not effective. These babies have such an overwhelming illness that despite all life-sustaining efforts they are not recovering. To continue this type of treatment may prolong suffering rather than provide an effective medical treatment. Palliative care may be the preferred treatment option.
Prenatal diagnosis of a lethal anomaly
Your obstetrician will most likely refer you to a specialist that handles high-risk pregnancies if he/she suspects a problem. These doctors are called perinatologists. The perinatologist will perform a targeted ultrasound to assess the baby and evaluate him/her for birth defects. Ultrasound is a noninvasive test performed almost routinely now on all pregnant women. It provides a picture of the baby in the uterus. Ultrasound looks at the anatomy of your fetus. We are now able to visualize babies via ultrasound at younger gestational ages than previously done. We are still learning what is common at these gestational ages. Therefore, we may need to repeat ultrasounds to continue to observe a specific part of the anatomy to see if it changes through the process of development. The major organs can be examined for abnormalities by approximately 16 to 18 weeks' gestation. Ultrasound also provides us with information about the position of the baby, amount of amniotic fluid, the position and structure of the placenta, cord position, length of the cervix and can provide more specialized views of blood flow and velocity within the heart and umbilical cord. Ultrasound cannot tell us definitively if your baby has a genetic disorder, but it will provide us with information about anatomical disorders. Ultrasound is limited in that it is like taking a picture. It cannot definitively identify genetic issues, or subtle abnormalities. Some images are dependent on the positioning of the fetus, and sometimes the baby is in a position that makes it difficult to actually get a good picture of some areas of the anatomy.
A test for chromosomal disorders is amniocentesis. This test is done at 16 to 18 weeks' gestation. Before the amniocentesis is attempted, an ultrasound is done to estimate gestational age, determine the position of the fetus and placenta, and determine if enough amniotic fluid is present. This is an invasive test. The test is accomplished by inserting a needle into the mother's abdomen, through the uterine wall and into the womb. Some of the amniotic fluid that surrounds the baby is aspirated or pulled up into the syringe. Then the needle is removed. It will usually take 10 to 14 days to get the final results. A quick response test, fluorescence in situ hybridization ( FISH), will give preliminary results in 24 to 48 hours and has been found to be very accurate. However FISH only looks for the three most common trisomies - 13, 18, and 21. Trisomies 13 and 18 are lethal anomalies. The fluid is sent off to the lab to be evaluated. Amniocentesis has the advantage of being very specific and accurate in diagnosis. The risks are minimal but do exist for preterm labor, amniotic fluid leakage, infection, and Rh sensitization. The disadvantage is the final test results take longer to return.
Another test that may be performed if there is a suspected problems with the baby is chorionic villus sampling (CVS). Chorionic villus sampling is an invasive test performed at 10 to 12 weeks' gestation. Chorionic villi are microscopic fingerlike projections that make up the placenta. The cells from the placenta can give us information about the baby's genes and chromosomes because the baby and the placenta formed from the same fertilized egg. A sample of the chorion is obtained one of two ways. A small, hollow tube may be passed into the vagina and through the cervix, guided by ultrasound, to gently take a small sample of the chorionic villi. The other method uses a needle that is inserted through the abdominal wall and is again guided by ultrasound to take the sample. The sample is then tested for chromosomal abnormalities.
The advantage of this test is it can be done earlier in pregnancy. But CVS has a risk (slightly higher than amniocentesis) of spontaneous abortion or fetal death, infection, bleeding, Rh sensitization and maternal cell contamination of the sample.
How does palliative care affect my baby?
The goal of palliative care is to provide physical, psychological, emotional and spiritual comfort of the dying infant and his/her family. Palliative care will focus on the prevention and relief of physical pain and suffering for the baby and provide support to the baby's family.
If you have a prenatal diagnosis that is incompatible with life but decide to continue the pregnancy until either labor begins spontaneously or is induced, you have the option of delivering at your community hospital or at Froedtert. For many, a relationship has been developed with the community physician and there is comfort in having someone you are more familiar with to assist you during this stressful time. Before delivery, however, be sure to discuss with your obstetrician the plan we will work on as a team. This written plan will outline your wishes for how the baby will and will not be handled after delivery. A written description that can be copied and shared is the best way to communicate your wishes with all caregivers. We will help clarify that your obstetrician and the hospital staff are comfortable with your plan of care and provide them with a copy of the palliative care plan to keep in your records for when you are admitted to labor and delivery. It is sometimes very difficult for health care providers to refrain from initiating resuscitation measures, especially for a newborn in the delivery room. Sometimes it is preferable to deliver at a hospital that has specialists who are available to assess the baby after delivery to verify the prenatal diagnosis. This could avoid the potential for transport to another hospital for verification if a question arises. The issue of where to deliver should be discussed with the perinatologist and your obstetrician.
Will I be able to help care for my baby?
Yes! If that is your desire, talk with your physician and labor and delivery nurse about your desires. If your infant goes to the newborn nursery or neonatal intensive care, ask your baby's nurse about ways to interact with and care for him\her. You will need time to eat and sleep and be alone, so even though you had made plans before the baby was born, these plans are not "written in stone" and can be adjusted at any time according to your needs. If you change your mind about how you will care for your baby, please let the staff know. They understand this is a very difficult and stressful time for you and your family. You will need time for your own body to physically heal from the delivery process. Do not ever feel that you are expected to behave in a certain manner. Each of us responds to grief in different ways. There is no right or wrong way to behave. It is normal to ask "Why me?," "Why my baby?," "What did I do wrong?" This is a normal part of the grieving process.
You can bring in pictures, small toys, booties, outfits and blankets for your baby while he/she is in the hospital. You can take pictures, give a bath, dress, hold, sing to, and talk about your baby before and after death. If you have any religious ceremonies you would like performed please let staff know. You could ask your own clergy, or we have chaplains who are available for our families.
Could my baby go home?
There is the potential that your baby could live beyond a few hours to a few days or more. If you are ready to go home and have the desire to take your baby home with you, this can be arranged. If this looks like a possibility, we can begin to make arrangements with a hospice home health care agency to assist you at home with end-of-life care for your baby. If, however, you are ready to go home and you do not desire to take your baby home, those arrangements can be made also.
Practical Family Needs
The hospital has staff available to help with your needs during this difficult time. Please talk with staff if you need assistance regarding anything: i.e. financial needs, extended family needs, phone, food, pictures, spiritual support, transportation, accommodations. If you have other children and don't know how to talk to them about their new brother/sister, a child life specialists can either give you ideas or actually talk with and listen to your children themselves. There are grief/bereavement support groups we can connect you with at any time.
Autopsy is something that will be discussed with you, if not before delivery, then at or near the time of your baby's death. This is a way to thoroughly examine the baby and help determine the exact nature of the defects that led to your baby's death. The chromosomes and genetics will be examined again. Sometimes there are rare genetic defects that could potentially be present in future pregnancies as well. An autopsy does not prevent you from having an open casket funeral as the hands and face are not affected by the examination. In some cases an autopsy is required. This will be discussed with you by a health care provider should this be the case.
Organ donation is rarely an option for dying infants, but we will be discussing this with you. Infrequently we may be able to use a baby's organs for donation. Through the loss and tragedy you are suffering it provides the potential to give another family and their child the gift of life.
The reason we are rarely able to use newborns organs is that the law is specific about who is able to be a donor. Within the law is something know as the "Dead Donor Rule" which means only those who have been declared dead may be used to harvest organs. This definition of dead includes "brain dead." Typically a "brain dead" person will have organs that are healthy enough to harvest and that will function well. The criteria used to define "brain death" cannot usually be applied to children under 7 days old. Even with a birth disorder that is incompatible with life or that will result in death, these babies would not fall into the criteria for persons qualified to be used for organ donation. For babies with a genetic alteration the organs also would not qualify as useable.