Approaches to Decisions
When children are sick, their parents sometimes have to make choices about what plan of treatment is best. Parents work with the doctors and nurses to get information. The staff suggests what treatments can be used. Then parents are asked to approve a course of treatment that is right for their child. Usually everyone agrees about what to try. Sometimes it is not clear what is right.
This booklet talks about some important ideas for decision-making and three ways to think about difficult decisions. These ideas are especially useful when discussing choices with the other people involved. These people may include the child, other family members, and your child's health care team. Especially when parents are not sure what is right, it is good to take the time to use some tools to think about what is best.
Please note: The following information was obtained from Children's Hospital and Clinics of Minnesota.
Background for Decision-making
Parents are Decision-Makers for their Child
Young children cannot completely understand their medical condition and tell us what they think is best. For that reason parents are usually the decision-makers for their child. The parent's job is to get the best information they can and to think carefully about the life goals that are possible for their child. The child's viewpoint should be included as much as he or she can understand and give opinions. Looking at things from the child's point of view, we ask the parent to tell us what they believe is best for their child. The health care team will make recommendations, but the parents guide us and give permission for the treatment their child should receive.
Starting Where You Are
Every family brings its own beliefs and background to decisions. We always want to start where you are. Talking clearly about these beliefs among yourselves and with the health care team makes decision-making clearer. Sometimes a crisis makes you question long held beliefs.
Talking about this can be a useful part of your discussion.
These beliefs come from many places:
- your cultural and family background
- your own religious or spiritual beliefs
- your extended family's religious and spiritual beliefs and what you grew up with
- your personal experience and approach to life
- your experiences within your family, friends, and life with illness and difficult decisions
- what you encounter in reading, news, movies, and discussions
Each family brings a different set of beliefs and background, and we encourage you to talk with us about your views, and then to see how the ideas presented below fit in with your views.
Hope
Hope is something we always want to hold on to, and never want to give up, especially in relationship to our children. It is also a word with different meaning to different people. Two different but important meanings sometimes get mixed up.
One meaning of hope is what we wish for. We may wish that the disease would just go away or that the medical problem never happened. A second meaning of hope is what we expect will really happen. We expect medicine to work or that there will be some improvement. Often the two meanings get confused with each other. A doctor may say, "We hope to see a response to this drug tomorrow." Does the doctor mean "wish" or "expect"? We would all hope, for example, that a disease will just vanish, but we don't necessarily expect it. As you talk with people, and as you think about things, it is important to be clear about what sense of hope you mean.
It's also important to think about what we can realistically hope for. Changing what we hope for or giving up certain hopes doesn't mean we are abandoning all hope our giving up on a child. Because hope has two meanings, we continue hope when we think about both what we wish for and what is realistic to expect.
Treatment as a Bridge to Achieve Health
One important idea is whether a treatment bridge to health or something that will be a permanent need. This is especially important if the treatment is invasive or painful. We accept a lot of treatments that are painful- surgeries, medications with side effects, ventilators, if they return us to good health. Using those treatments long-term or permanently becomes harder if they will put off death for a while but not give a good quality of life or a return to health. It is always reasonable to ask about whether a treatment will be a bridge to better health or a permanent situation.
Realistic Life Goals
As you start thinking about each decision, it is good to think about what are realistic life goals for your child. Each person is different. What we want and what we can do in life is different. Good decisions about medical treatment take into account who each person is and what is possible for their life. We all start out with many hopes and dreams for our children, and as time goes by we learn what is possible, what is likely, and what is not possible. Part of good decision-making is understanding what is possible and setting goals that both get us as far as we can but are realistic. This is hard when we talk about medical conditions and life-and-death issues for children. Choices about treatment, however, need to be made with understanding about the life-goals parents have for their child.
The Child's Point of View As you think about what is best, spending some time to look at the world as your child experiences it is important. Your child's experience of their body (movement, mastery, pain, basic functions like breathing and going to the bathroom), their thoughts and feelings about themselves and their world (confidence, fears, happiness, worries), and their interactions with others (being comforted, feeling loved, feeling lonely, having friends and family around) are all important aspects of experience.
The Family as a Whole
Children are always part of families, and taking into account how your child is part of your family is important. This means both how your family helps your child, but also how the medical decisions you make affect your family. Things like child's excitement and joys, what they bring to you and any brothers and sisters, and how the medical care you choose affects brothers and sisters and parents are an important part of the decision. Things like nurses in your home, numbers of doctors appointments, the time it takes to do treatments, expenses of treatments and appointments all need to be taken into account and planned for along with the opportunities for joy, loyalty, helping another person, and embracing life.
Knowing for Sure
One thing that makes decisions hard is that we all want to be sure we are doing the right thing. In medical decisions, as in other decisions for our child and family, we are only human beings. We can not see the future, and can not be absolutely sure. We still need to make decisions, because that is our job for our children. The amount of time we have for decisions also varies. Ask how quickly a decision must be made before more problems might come up if we wait.
All we can really be sure of is that we did our best for our child at the time. That is why we want you to talk carefully with your doctors and health care team. Get all the information you can, ask lots of questions, talk to the people who know you and your child, and think about the decision carefully. As parents we can not be perfect, but we can do our best. That is what we should expect of ourselves, and what our children expect of us.
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