Providing Compassionate Care to Families Making Difficult Choices

This article was written by Rose Carlson, Program Director at the National Share Office.

The term “difficult decisions” encompasses a variety of situations that parents may find themselves faced with and as caregivers, it is important to understand the many challenges and complexities families must face throughout the decision making process as well as the grief journey. With the advancement of prenatal testing measures, it is not uncommon for parents to find out fairly early in the pregnancy that their baby has a condition that is incompatible with life. Also, many parents today become pregnant due to extraordinary medical procedures and may be pregnant with a high number of multiples, which increases the likelihood that the parents will have to make some heart-wrenching decisions. It is vitally important to keep in mind that these decisions are typically not made lightly and are made after all options have been presented and evaluated.  Share does not take a political stand, but provides bereavement care no matter what decision a family ultimately makes.

Most often, you as caregivers will see the family after they have already made their decision and are in need of support as they make their way on their grief journey. They may have already interrupted the pregnancy or opted for early induction. They may have made the decision to interrupt, yet are still carrying the baby. Sometimes, their friends and family members may think they should feel 'lucky' that they found out early that something was wrong, and may even think that their grief shouldn't be as acute since they made the decision to interrupt the pregnancy. They may have made the decision to interrupt the pregnancy but still need to decide how that should be done. Often, they are not given much time to make these decisions, and depending on how far the pregnancy has progressed, they may have to travel far from home, deal with a hospital ethics committee, or even go to an abortion clinic, which is devastating and traumatic for someone who is carrying a very wanted baby.

The parents may have decided to continue the pregnancy and are now looking for support in how to 'get through' the rest of the pregnancy carrying a baby they know will not survive. The decision to continue a pregnancy can be just as grueling as the decision to interrupt one. If they have decided to continue the pregnancy, they may need your help in creating a birth plan, which can help them feel as if they have some control over a scary situation that is completely out of their control. Listen to their wishes and try to do whatever you can to make them a reality; don't just assume that something cannot be done. If the family has other children, help them find resources on children's grief issues. They may be afraid of what their baby will look like, so try to find out as much as you can about any medical condition their baby has so you can help prepare them. It can be very draining for parents to keep all of their loved ones informed about what is going on as their pregnancy continues, so suggest web-based ways for them to keep everyone updated. Caring Bridge, www.caringbridge.org, and Care Pages, www.caringpages.com, are excellent ways for them to share news about their baby without having to make numerous phone calls.

While most of the time parents will come to you once their decision has been made, it is possible that parents who are still in the midst of their decision-making process will come to you. It is important not to guide them in this process while letting them know their options, letting them know about any resources you have, and offering your support once the decision has been made. There are organizations that offer support for many different conditions, and Share provides a list of these resources. It can be helpful for you to familiarize yourself with the many resources that are available so that when a family comes to you for help, you have places to refer them to if necessary.  Oftentimes, parents want to connect with other parents who have experienced something similar, so if you know of other parents who have gone through this, ask them if they would be willing to talk to new parents.

Whatever situation you find yourself faced with, it is important to provide a non-judgmental ear and keep in mind that whatever decision the parents made, they did so with nothing but love and the best interest of their baby at heart. It is also important to keep in mind that parents in this heartbreaking situation often feel very isolated since most people cannot to relate to their loss, and you may be the only supportive, caring person they have at this difficult time. Parents faced with a fatal or potentially fatal diagnosis are scared, confused and overwhelmed. No matter what they decide to do, they will sometimes wonder if they made the right decision. However, most parents who are told all of their options and supported through whatever decisions they make will feel as if they made the right decision with the information they were given at the time. Whether or not they continued the pregnancy, they may need your help planning a farewell ritual or preserving memories. Always remember that the baby was wanted and loved, and know that the care you provide to them at this most difficult time of their life will mean so much to them in the years to come.