The WGBO contains the rights and obligations of patients. Important elements include the right to information and the right to give permission for treatment. This is known in English as 'informed consent' or: you give permission after you have been well informed. You and/or your child will decide together with the care provider what will happen. All hospitals and care providers are obliged to comply with the WGBO.
According to the law, you and your child have a right to:
You and your child have a right to information in understandable language. Only if you and your child are well informed can you consider the situation with us and help decide on the treatment. The care provider should always inform you and your child verbally. This may be supplemented by written information. Where necessary, pedagogical staff, for example, will help you to inform your child in a form that suits his or her age.
You and your child have a right to information about:
- your child's sickness
- the nature and purpose of the treatment or examination and of the operations to be carried out
- consequences, risks, possible side effects and their complications
- other appropriate methods of treatment or examination
- the medication your child is prescribed with possible side effects and complications
- consequences of not dealing with or not examining it
- follow-up care
This way you and your child always know what is going to happen and together with the care provider you can make an informed decision. Is there something that you or your child do not understand? Or have you forgotten something? Ask everything you want to know.
If you and/or your child do not want to receive certain information, you/your child may refuse that information. Suppose, for example, that you or your child do not want to know whether there is an increased risk of a genetic disorder. If so, you and your child have the right to refuse this information. Only if the care provider thinks that it will cause you, your child or others serious harm, can he/she still provide the information.
Treatment or an examination may only take place if you and/or your child have given your permission to do so. The WGBO makes a distinction according to the age of the children:
- up to 12 years of age: decision made by parents (or guardian). Children under the age of 12 are not allowed to make decisions for themselves. Young children must be told in an understandable way what has happened and what is going to happen to them.
- 12 to 16 years of age: both parents (guardian) and child must give their consent. Generally speaking, children from the age of 12 can assess their own situation and have their own opinions. The opinion of the child is, in principle, decisive.
- from 16 years of age: children have the power to make decisions. From the age of sixteen, children are equated with adults and make their own decisions. The consent of the parent (guardian) is not required. The parents (guardian) will also not receive any information about their child if the child does not give his/her consent.
Sometimes a child of 12 years or older is unable to make an independent decision regarding his or her treatment, for example if he or she is underdeveloped or if he or she is unconscious. This child is called "legally incapable". In such situations, the parent (guardian) must make the decision.
You cannot just call someone legally incapable. A child from 12 years of age is legally capable, until it is established otherwise. The doctor is the first to determine whether or not your child is legally capable to make a particular decision regarding care or treatment. However, he/she is not the only one to decide that. He/she does this together with other practitioners. Families or other people from your child's environment can also play a role in this and give their opinion.
In order to determine whether your child is legally incapable, there are a number of characteristics that provide guidance to the doctor. Generally speaking, being legally incapable is an issue if your child cannot understand the information about his/her illness at that moment and therefore cannot make a proper decision about treatment and can no longer foresee its consequences.
According to the law, the care provider plays an important role alongside you in representing the interests of your minor child. In the event of a difference of opinion about the treatment, the care provider may ask the court to assess the importance of the treatment for your child.
Are there treatments that you or your child really do not want? Then it is good to write this down in a living will (or testament). An example of this is a 'non-resuscitation declaration'. You should also discuss this with the treating specialist.
You and/or your child can ask for a second opinion from another practitioner at the Princess Máxima Center, but also outside of it. You and/or your child may also ask your own treating physician for a second opinion from a specific expert at home or abroad.
You and/or your child can ask for a second opinion at different times. For example, if you have to make an important decision about the treatment or if you have doubts about a diagnosis or treatment. Discuss a request for a second opinion with the health care insurer in advance. If the health care insurer does not accept the costs, you will have to pay them yourself.
If you or your child are not satisfied, discuss this with your child's treating specialist and try to find a solution together. If you and/or your child are not satisfied with the outcome of the interview or if you would prefer to raise your complaint elsewhere, you can file a complaint. The right to submit a complaint is laid down in the Quality, Complaints and Disputes Care Act (Dutch: Wet kwaliteit, klachten en geschillen zorg, Wkkgz).
If you or your child wants to file a complaint, you can contact the Complaints Mediation and Patient Support department at UMC Utrecht, which also works for the Princess Máxima Center. The Complaints Mediation and Patient Support department can be reached by telephone from Monday to Friday from 08:30 to 12:00 and from 13:00 to 17:00 via +31 (0)88-7556208 or +31 (0)88-7558850. You can find more information about the different complaint processes here. Complaints agents work together with you, your child and the parties involved to try to find a solution. You can also make use of a complaint form, which you can download here.
Here too, the following applies: for children up to 12 years of age, you have the right of inspection; between 12 and 16 years of age, your child and you both; and for child from 16 years of age, the child has the right. This will also be at the discretion of the care provider. You and/or your child may also receive a copy of the medical records. We charge a small fee for this.
You may not simply put photographs, videos and sound recordings made in the Princess Máxima Center on social media. As with taking photographs, videos and sound recordings, this also applies to placing them on social media: make sure that no other patients, parents or (names of) our employees can be identified or heard.
If this is the case, and you still want to post the photo, video or sound recording on social media, you must obtain the explicit permission of that person beforehand.
In addition, the Princess Máxima Center requires you to respond immediately to a request from a person who has previously given permission to delete the name, photograph, video or sound recording.