Caregivers

Compassionate Care for Parents: Difficult Decisions

The term "difficult decision" has many facets which will impact the parents making the decision. From pre-conception to diagnoses during the pregnancy, and even in the care a critically-ill newborn will receive, there are many challenges in the spectrum of decision-making. This topic is sensitive to many, and may not be easy to discuss. Many people have very passionate feelings about this topic and may find it difficult to separate personal views from individual stories. The National Share Office does not take a position on what decision is right or wrong. We do, however, believe in helping and providing bereavement support for all parents grieving the death of a baby, regardless of the parents' decision in this situation.

The terminology of pregnancy interruption has changed over the years. Some of these changes include therapeutic abortion, termination of pregnancy, pregnancy interruption, genetic termination, and early induction of pregnancy. Often times, parents may come to a decision based on the information they have been given, only to find that their decision must first go to an ethics committee due to the hospital's stand on the issue. The time spent making the decision can be a very grueling one for the parents.

When we, as caregivers, see the families, most have already made their decision and are usually in need of compassionate support as they make their way on their grief journey. They may have already interrupted the pregnancy or opted for early induction; perhaps they are preparing for the death of a baby who will not live long after birth, or may be already mourning that death; or, they may be grieving the death of a critically-ill baby once medical interventions were stopped. Just as there is agony in the decision to interrupt a pregnancy, there is anguish in deciding to carry a critically-ill baby to term. Parents want to make the best decision for their baby, and each situation is different.

It is possible, however, to be faced with parents who are still in the midst of the decision-making process, and who need support during this time. When in this situation, one of the most important ways to provide support is to link and refer to as many resources as possible - - other doctors or specialists, chaplains or pastors, nurses, social workers, genetic counselors. There are numerous websites that provide support to families who have received a prenatal diagnosis. A good thing about online support is the anonymity (see some website links following this article). Often, families have a very short amount of time to make a decision that most of us could never imagine having to face. Many make this decision alone, without the support of others, because they may not be aware of where they can receive support, and because of fear of others' reactions. To provide a non-judgmental ear - - to be a sounding board as they work towards a decision - - is invaluable at this arduous time.

Know your limits…if you are unable to support a family facing a difficult decision, or one who has already made a decision, you can tactfully remove yourself by referring them to someone else. What parents need most at this time is the information to help them make a decision, and a non-judgmental person to hear them while making the decision and after the decision has been made. They did not ask for this. To be faced with this decision is a living nightmare for many parents. And for parents who have to decided to continue the pregnancy until the baby's birth or death, support is just as imperative during this very emotional time.

Another important component in supporting families is to help them create memories. This may be done whether the parents have decided to interrupt the pregnancy, or have decided to carry to term. Either way, we can help them create memories of the pregnancy, and plan memories to be created after the baby is born. Consider also assisting the parents to create a birth plan. If their precious baby is born alive, there might not be much time before the baby dies. Perhaps they would like to have a pastor or rabbi present to baptize or bless the baby. During the time of preparation for the birth of the baby, they should also consider how much intervention they want for the baby. Being informed and prepared will help to soften the atmosphere for parents. (Preparation should also include a birth plan so anyone assisting during the labor and birth is aware of the situation). Farewell rituals are also important for families, and may be especially useful to parents who have chosen a D&E and may not have been able to see their baby.

Remember as you care for parents who have made a decision that this baby was wanted and loved. The same type of support given to bereaved parents who were not expecting a loss should be extended to parents who have faced a difficult decision. These parents will probably have additional needs, as they may not be able to share their story with everyone, or may have guilt over their decision. If ever there was a time that parents needed support and follow-up, it is now.

Some points to remember:
Parents are often unable to share their story with others; you may need to provide one-on-one support, as you may be the only person they can confide in. Allow the parents to talk as much as they need to…...your ears may be among the few to hear about their precious baby!

If parents who have made a difficult decision attend the support group which you are facilitating, keep a non-judgmental role as the moderator.

The role of moderator should also be to create a safe environment for those parents who do want to share their story and the decision they made. If others in the group do not agree with the decision, gently acknowledge that even though that is how they feel, it was the decision the parents made, and no one else knows exactly what they felt or experienced.

There are many websites for specific diagnoses, and a google search will turn up many of them. There are also links to many websites available at the National Share Office website. The following are some links that may be helpful: