As a pediatric palliative care and hospice doctor, I often ask parents what goals and hopes they have for their terminally ill child. It is not an easy conversation. However, I am forever humbled by their thoughtful responses. My job is to take these wishes and assist in translating them into loving actions. I aid them in redefining hope so as to bring meaning to an unthinkable event.
When I assist pregnant couples who have recently learned that their unborn baby has a life-limiting condition, I again try to assist in framing their hopes. However, I have learned that these parents’ experiences are distinct from others, since they have not yet gotten to meet their child so they do not know what will bring their child happiness versus pain. They feel robbed of looking at their child to know what the right decision is.
As physicians, we often predict outcomes based on prenatal lab tests and imaging, and expectant parents are left feeling full of medical data but empty of any knowledge regarding their child’s suffering, joys, or desires. Because there is a lack of certainty and they have yet to meet their child, parents often voice to me the difficulty to make any decisions.
As a hospice physician, my job is to find their supports and to assist them in voicing their goals when so much is unknown. Prenatal palliative care seeks to decode doctor words, help identify goals when the goal of a long life may not be possible, and turn those goals into plans. One example of this is deciding to have a family priest in the delivery room because baptism is very important to the family. Another is when parents decide not to have CPR performed for personal or religious reasons.
I have also worked with families where there was so much unknown that no plans could be made ahead of time. In those cases, we assist in creating basic expectations together, to guide decision making in the moment. This would ensure that the baby would not feel pain and would also allow the child’s physicians to assess and to follow the team’s medical advice as it unfolded.
In these situations, hope is not necessarily hope for a cure. Instead, it might mean optimism that something good can come from experiences with your child or from sharing your child’s life with others. Hope could also mean comfort in the ability to prepare for the road ahead or even solace in knowing that there will be a peaceful end to your child’s suffering. As palliative care and hospice professionals, we can help reframe hope for parents and families through compassion and open conversations about expectations and goals.
When I am asked by parents how to have hope and yet prepare for the sadness, I encourage them to give themselves two gifts. First, make promises to your child that you know you can keep. You can promise to love them, but you may not be able to promise that you will find a cure. This will allow you to feel that you kept your promises, which is a very important piece to feeling like a good parent. Second, give yourself the gift of changing the plan based on new information. When you learn something new about your child’s condition from their physician, new decisions may need to be made. It’s easier to handle the rollercoaster of emotions and meet the needs of your unborn child when you allow yourselves to be flexible in your decision making, especially when information about their condition changes.
If you are a parent or family member of a child with a terminal illness, know that palliative care specialists are here to help.
Lisa Humphrey, MD, is the director of Inpatient Services and co-director of the Pediatric Palliative Care Program at Nationwide Children’s. She is also assistant professor of pediatrics for The Ohio State University College of Medicine.
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