This month we are pleased to publish the revised position statement NICU Nurse Involvement in Ethical Decisions (Treatment of Critically Ill Newborns) by the National Association of Neonatal Nurses. The position statement acknowledges the significant ethical challenges that are presented to those of us who work with critically ill neonates in the NICU, and emphasizes the role of the nurses who work so closely with families during this difficult time in their lives.1
When friends, family, and acquaintances hear that I work in neonatal intensive care, often their first words are "oh, that must be so sad." My standard reply is to minimize the idea that there is anything sad about it. "Oh, sometimes, but most of them get better and go home." I believe my goal is to protect the listener from the idea that babies actually die, or that the outcome of those that survive might be less than optimal. Perhaps however, the goal is not just protecting the listener, but protecting myself as well. We do not often acknowledge how stressful it can be to work in an intensive care nursery and deal with the ethical dilemmas that sometimes arise.
The position statement reminds us that as nurses, we are intimately involved with the baby and family who are at the center of these difficult situations. Parents are overwhelmed and the outcomes their infants face are often uncertain. They are asked to make decisions based on information they may not understand very well. Information often needs to be repeated frequently. As nurses, one of our responsibilities is to help educate these parents and clarify information for them.
It is vital that parents are active participants in determining the plan of care for their infant.1,2 This means that they need complete and accurate information, including the treatment plan; what the expected outcomes of the plan are; the potential harmful effects of the treatment; and the long term complications or problems that might occur.3 It often falls to the nurse not only to provide information, but to put it into a context that the parents can understand.3-4 It can be particularly stressful when parents do not seem to understand the information we are giving them, or make decisions that are different than what we think the information supports.
When the parents choose a course of action that is different from what the healthcare team recommends, the situation can be particularly stressful. It is difficult to witness parents who want "everything done" for an infant that we know is not going to survive. How do we support the parents and also advocate for the best interests of our patient? This is one of the most difficult situations we find ourselves in and one that is not easily resolved. What we consider futile treatment may not be so in the eyes of the parents. Consulting the hospital ethics committee may be helpful in these situations. The ethics committee can help determine if the parents understand the situation. They can clarify for the staff what the parents want done for their infant. The hospital ethics committee may not force the parents to accept a particular course of action, but they can help both the parents and the staff understand each other's point of view. Clear communication and improved understanding may lead to resolution of the ethical conflict.2,3
Conflicts in values regarding life and death and our viewpoints about "quality of life" influence our opinions about what is happening with many babies in our NICUs. We must recognize that our values and opinions are our own, and are not necessarily held by others. We should also remember that our images of disabilities may be overly negative.5 A study of former extremely low birth-weight infants who are now in adulthood noted that even though they acknowledged limitations in cognitive and physical abilities, they did not report a lower health-related quality of life than their more healthy counterparts.6
These ethical dilemmas and stressful situations are not going away anytime soon. If anything, as technology improves and smaller, more premature babies survive, these dilemmas will become more frequent. Knowing that we will be repeatedly required to deal with complex ethical dilemmas, how then do we cope?
The first step is acknowledging that our jobs can be stressful, and while most babies do "get well and go home," there are some that do not. Sometimes working in the NICU is sad. Sometimes we disagree with the treatment a baby is receiving. Sometimes we disagree with the discontinuation of treatment. Denying our feelings may make it easier to work, but eventually we end up facing those feelings one way or another.7 This denial can result in difficulties at home or in our relationships with others. Failure to acknowledge that we work in a stressful environment may be one of the reasons we sometimes fail to support each other, as well as new nurses that come into our units.7
Spend time away from work doing things that are positive and enjoyable. Come to work with adequate rest. Make friends outside of work that can share other interests besides neonatal care. Extra time spent on you will pay off in an increased ability to cope with stress at work. In addition to regular activities, consider actually taking a vacation. That means an extended period away, doing some leisure activity, not cleaning closets or landscaping the backyard. Most of us do not spend enough time just enjoying ourselves. Often, those who put off taking a vacation are the ones who need it the most. When was the last time you took a break to think about your future, your plans, what you want to do next with your life and your career? If we do not make time to plan and to dream, we find ourselves in a rut, leading to burnout and depression.8
Provide support to one another. Our families and friends outside of work cannot totally understand what we do and how difficult our jobs can be. Debriefing emotionally challenging or difficult cases can help us deal with our stress. We are obligated to do our best to provide care for our babies and their families, recognizing that our best may require different approaches for different situations. Our best does not always lead to the outcome we want, and maybe not the outcome we think is right. However, our best will always make a difference for the families we care for.
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