|By: Mara Tesler Stein, Psy.D. and Deborah L. Davis, Ph.D.|
|In the NICU, many preemie parents are
faced with making difficult medical decisions. Maybe there was a time when you had to
decide whether to consent to surgery or treatments that may or may not have improved your
babys condition. Even routine decisions can seem unnerving, as you may have felt
unsure about how to weigh risks and benefits, or the relative severity of your babys
problems. You may have felt overwhelmed and relied completely on the doctors
recommendations. Or perhaps you pored over the options and changed your mind a dozen
times. Whatever your approach, youve had to come to terms with any consequences of
the decisions made.
We will address routine decisions in a future column, but in light of recent events, our focus here is on the challenge of coming to terms with decisions that are a matter of life and death.
For parents who face life and death decisions with their baby, they must make an impossible choice between 2 options: A) Do we continue aggressive medical intervention in the hope that the baby will eventually turn around and be able to live comfortably and meaningfully, free from continuous hospitalization and invasive medical technology? Or B) Do we turn away from aggressive medical intervention in the hope that we are sparing our baby a life of pain and distress which ultimately would turn into a prolonged death, where treatments do more harm than good?
If you faced such a decision, you know that this was a choice between terrible and horrible. Either you had to choose "struggle and suffering followed by an uncertain outcome" or "peace and comfort followed by certain death". In addition, you had to make this decision with limited informationthere were no crystal balls that could tell you what your babys outcome would be if you chose to "go for it." You had to rely on what information you were given, the doctors best guesses, your values regarding life and death, your bias toward medical technology and nature, your spiritual beliefs, and your gut instincts. Ultimately, you had to guess what was in your babys best interests, and go with your heart.
No matter what you decide, you will probably wrestle with doubts and second thoughts.
If you decided to take a chance with medical intervention, even if your baby lives and does well, you may assert that you might not make that same decision again, because of what your surviving child has had to endure. If the child is severely disabled or suffers chronic illness or pain, youll naturally have doubts about whether you made the best choice for your child. And if your child dies anyway or eventually, you may question whether it was at all worth it.
If you decided to turn away from medical intervention, doubts and second thoughts are a normal part of your grief over your babys death. Since you miss your baby so very much, it is natural to wonder, "If we had tried, would my baby be alive, happy and with me today?"
In either case, imagining the "what ifs" is a normal part of coming to terms with your decision. Having doubts is a natural reaction to making such a difficult, perhaps painful decisiondoubting doesnt necessarily mean that you made a bad choice. Even if you are struggling mightily with doubts, you can still make peace with whatever decision you made. Over time, you will mull over everything that happened, and eventually you can accept that your decision was truly right for your baby and your family in that particular situation, at that time, with the information at hand. As you adjust to your babys death or your babys life, you will also reconcile with your doubts and second thoughts.
The following doubts and worries are shared by many parents who have faced life and death decisions in the NICU:
Did I miss some critical information or advice?
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