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Background for Decision Making

Starting Where You Are
Every family brings its own beliefs and background to decisions. These beliefs come from many places:

  • Your cultural and family background
  • Your own or your extended family's religious or spiritual beliefs
  • Your personal experience and approach to life, illness and difficult decisions
  • What you encounter in reading, news, movies, and discussions

We always want to start where you are. Talking clearly about your beliefs among yourselves and with the health care team makes decision making clearer.

Treatment as a Bridge to Achieve Health
We accept a lot of treatments that are painful – surgeries, medication side effects, ventilators – if they can potentially return us to good health. The decision to use those treatments long-term or permanently becomes harder if they will delay death for a time – but not give a good quality of life or a return to health. It is always reasonable to ask whether a treatment will be a bridge to better health or a permanent situation.

Realistic Life Goals
Good decisions about medical treatment take into account who each person is – and what is possible for their life. 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 realistic life goals parents have for their child.

The Child's Point of View
As you think about what is best, it is important to spend some time looking at the world as your child experiences it. Your child's experience of their body, their thoughts and feelings about themselves and their world, and their interactions with others (being comforted, feeling loved, feeling lonely) are all important aspects of experience.

The Family as a Whole
Any decision-making process needs to take into account both how your child is part of your family – and how medical decisions you make affect your family. Things like nurses in your home, numbers of doctors’ appointments, and the time and expense it takes to do treatments all need to be taken into account and planned for along with the opportunities for joy, loyalty and embracing life.

Source: Children's Hospital and Clinics of Minnesota