Consenting to a test, procedure or surgery is an important decision. Before you consent, it is essential to have a conversation with the physician (or other provider) who is recommending and/or performing the procedure so you can fully understand what is involved and have all of your questions answered.
What should I know before I give permission for my child's procedure?
- What is my child's medical problem?
- What is the proposed procedure, test, or surgery?
- Why is the procedure recommended? How will it help my child?
- What are the serious and common risks of this procedure?
- What will the recovery be like?
- What are the alternatives? What are the advantages and disadvantages of the alternatives?
- What would the doctor recommend if I say "no" to this procedure?
- What is likely to happen if we do nothing?
Is the procedure guaranteed to work?
- No. It is impossible to guarantee the outcome or to eliminate every risk. However, the doctor has recommended the procedure because he/she thinks the advantages to your child outweigh the risks.
Will my doctor work alone?
- Many procedures require more than one pair of hands. Your doctor may be helped by other fully trained doctors, doctors in training, nurse practitioners, physician assistants and other healthcare providers. Sometimes the team who assists your doctor will change during the procedure.
- No one can assist your doctor unless they are legally allowed to do so here at Boston Children's Hospital.
Who will watch the procedure?
- In most cases, nobody will watch except the care team.
- Sometimes there are other observers. The only people who are allowed to watch are medical students on approved training rotations and others who have formal guest privileges at Children's. For example, surgeons from around the world often visit to watch our teams at work.
What if I don't want anyone to watch my child's procedure?
- Please tell us and we will respect your wishes.
- However, please consider that by allowing students and others to watch your child's procedure, you will be helping us train those who will care for the next generation of children.
What is "teach back"?
- The doctor will ask you to explain the procedure back to him/her to make sure we have done a good job of explaining things to you. We want you to be able to tell us your understanding of:
- what is being done for your child
- the major advantages, and
- any important risks of the procedure.
The consent form says the doctor may change the plan during the procedure. Is that common?
- It is rare for the doctor to change the plan during a procedure. In most cases, the doctor would contact you in the family waiting area before making a major change in plan.
- Sometimes doctors will find something they were not expecting and need to change the plan.
- In an emergency, the doctors will respond immediately, and may not have time to contact you first.
- Emergencies are rare. However, our job is to prepare for any event, no matter how uncommon
Why would my child need blood or blood products? What are the risks?
Blood and blood products are given to improve the oxygen supply to the body. They help to correct bleeding problems and can be life-saving.
- Sometimes blood is donated by the patient in advance of a procedure for his/her own need, but usually blood is given by healthy volunteer donors. Donated blood is tested for many diseases including HIV (the virus that causes AIDS), viruses that cause hepatitis (Hepatitis B virus and Hepatitis C virus), West Nile Virus, and syphilis. This screening and testing means that the chance of catching a disease from blood is extremely low.
- There is a small chance of developing other reactions from transfusions, such as allergies, fevers, complications from too much fluid in the bloodstream, lung injury, and reactions from receiving incompatible blood. These reactions are generally treatable and patients almost always recover quickly and completely. However, in rare cases, patients can die from a complication from a blood transfusion.
- You have the right to refuse a blood transfusion. Refusing a blood transfusion may be risky because it may limit the kind of treatment that your child can safely receive. If you are considering refusing a transfusion, please discuss with your doctor what that would mean for your child's health and treatment.
What does it mean that my child's tissues will be tested?
- Tissues that are removed during surgery are tested and examined by a special physician (pathologist) to ensure there are no unexpected problems. This examination is an essential part of your child's care.
What does it mean that my child's tissues may be used for research?
- Boston Children's Hospital, like other research hospitals, may use tissue (that would otherwise be disposed of) for research into causes and cures for disease or for teaching purposes. Any tissue that we use for research will be de-identified, which means that we can not identify which patient it came from.
What does it mean that pictures or video may be taken?
- In many procedures, pictures or video records of the findings are considered "standard" and are needed for best care. For example, doctors may need pictures to tell if your child's condition has changed over time.
- Pictures and video are used only to care for your child, or to teach others. When they are used for teaching purposes, all identifying information (such as names and addresses) is removed.
I don't agree with some parts of the consent. What should I do?
- Tell your doctor. Some parts may be crossed out before you sign. Other parts (such as permission for my doctor to change the plan if he/she finds other problems during the procedure) cannot be removed.
Who should sign the consent form?
If the patient is a "mature" or "emancipated" minor, he/she may have legal authority to consent without the parent or guardian's knowledge.
- If the patient is over 18 and legally competent (able to understand), the patient should sign.
- If the patient is too young to understand, the parent/guardian should sign.
- If the patient is old enough to understand (often about age 12), but under 18, it is usually best for both the patient and the parent/guardian to sign.
- Are there any special circumstances determining who should sign the consent form?
- If the parent does not have legal custody of a child for any reason, the legal guardian should sign.
- If the patient is over 18, but is not competent to understand, a court order may be needed to appoint a guardian who can sign on the patient's behalf.
To download a copy of this document, please click here. A Spanish version of this is available from your provider.
Please send comments or questions to: Familyed@childrens.harvard.edu