Three Ways to Think About Hard Decisions
Please note: The following information was obtained from Children's Hospital and Clinics of Minnesota.
Benefits and Harms
One way to think about a course of treatment, and about each single treatment, is to ask about the harm and benefit it brings to the child. Every treatment has both a harm and a benefit.
Sometimes the harm is small; for example it tastes bad, or it is inconvenient. Other times the harm is in-between or large; side effects can damage other organs or cause a risk of bleeding. They may even be life-threatening.
Benefits come in the same way: small, in-between or large. A new medicine might make a small difference in lab values, but not really change the overall situation. Or it might have a chance to make a big difference for the child. Ask your health care team to help you sort out the possible harms and benefits.
It is also important to ask if the benefits and harms are certain or uncertain. Often in medicine we don't know for sure what will happen, so you have to decide even though it is not clear. Again, ask your health care team about how likely each harm or benefit may be.
You also need to ask about who gets the harms and benefits. We always start by asking about the patient. Harms and benefits to the patient are most important, but you also need to think about other members of your family, for example brothers and sisters. Sometimes even other children taken care of at the hospital are affected. Especially for things you don't know about or understand, you can ask the doctors and nurses about harms and benefits. That helps you make the best choice for your child.
It can often help to write down the harms and benefits of each choice in a simple format like this: Harms verse Benefits & Doing the Treatment verse Not Doing the Treatment
Doing the Right Thing as a Parent
Many parents ask "How can I be the best parent for my child?" about the choices they need to make. The answer is often unclear because the harms and benefits are unclear. Every parent wants to do what is best for his or her child. The problem is knowing what is best.
One thought many people have is that a good parent should do everything for their child, and that the doctors should do everything. But sometimes a treatment or our technology and machines can not really make children better and can cause more suffering than cure. Rather than thinking of doing everything, it makes sense to think about doing all the right things.
Many people think about this based on how their parents did things. They may want to do things the same way or do things differently than their parents. That is an important kind of information, but there are many other places to get information on this question. Talking to family or trusted friends, reading, and talking to your child's health care team can all help. The important thing is to do your best to understand and make sense of the choices you are facing.
Most people agree that a good parent should do their best to know what is right for their child. The parent tries to understand the harms and benefits, and to make the best decision they can. Sometimes we cannot know for sure what is right, but we can know that we did our best to try to understand it and see it from our child's point of view.
Doing To and Doing For
When treatments and decisions get complicated there is a question that can be helpful. "Does this treatment do something for my child, or do something to my child?" This question recognizes that sometimes a treatment may be medically possible, but doesn't really help the child overall. For example, it may be possible to straighten a child's bone, but if they will never use their arm or leg for other reasons, the surgery may not make sense. With each treatment, in addition to asking about harms and benefits, you can ask if it is doing something for or to your child.