The WGBO describes patients’ rights and responsibilities. Important rights include the right to information and the right to informed consent, which means that a patient (or their legal guardian) can accept or refuse a recommended treatment after being clearly informed about the pros and cons of the treatment and of any alternatives. As the parent of a child with cancer, you and/or your child will decide together with the medical team what treatments will be given. All hospitals and healthcare professionals must comply with the WGBO.
Read on for more information about your and your child’s legal rights.
You and your child have the right to information in clear, understandable language. You and your child will only be able to participate in discussions and medical decision-making if you are well informed. The healthcare provider must always give this information verbally, and may provide extra information in writing. If necessary, our pedagogical staff or other experts will help you to share this information with your child in an age-appropriate form
You and your child have a right to information about:
- The child's illness
- The nature and purpose of the planned treatment, tests and/or medical procedures
- The expected effects, risks, possible side effects and complications of these interventions
- Alternative methods of treatment or examination
- The medicines prescribed for your child, and their possible side effects and associated complications
- What to expect if treatment or examination is not carried out
- Follow-up care
This information will enable you and your child to understand what’s going to happen and to make well-informed decisions about care together with the medical team. Is something not clear to you? Or did you forget to ask something? That’s normal, and we want to make sure that we give you all the information you want. So just ask!
If you and/or your child do not want to receive certain information, then you have the right to refuse it. An example might be if you or your child do not want to know whether the child has an increased risk of developing a hereditary disease. Your right to refuse information can only be ignored if your healthcare provider believes that this would lead to serious harm for you, your child or others.
Medical treatment or examination cannot be carried out unless you and/or your child consent. The WGBO determines who will give this permission, based on the child’s age:
- Under 12 years of age: the parents (or guardian) give permission. Children younger than 12 may not decide for themselves. However, they do need to be told—in a way they can understand—what’s happening to them and what they can expect..
- 12 to 16 years of age: both the parents (or guardian) and the child must give consent. Most children aged 12 or older can understand their situation and have their own opinion. In principle, the child’s decision should be followed.
- 16 years and older: the child has the right to decide. Children from the age of 16 should be treated like adults and make their own decisions. The consent of their parents (or guardians) is not required. Moreover, parents (or guardians) may not receive information about their child without the child’s permission.
Some children aged 12 or older might not be able to make an independent decision about their medical treatment, for example if they have a developmental disability or are in a coma. In that case, they are deemed not to have the capacity to give informed consent and the decision must be made by the parent (or guardian).
From the age of 12, all children are considered to have sufficient capacity to consent to treatment, until proven otherwise. The doctor is the first person who determines whether a child is incapable or capable of giving informed consent, but this decision is always made together with other healthcare professionals. The patient’s family or other people close to the child can also play a role in making this decision and giving their opinion.
The doctor uses a number of criteria to determine whether or not a child has the capacity to give informed consent. In general, a child is considered incapable of consent if he or she cannot understand the information about his/her illness, and therefore cannot make a proper decision about treatment and understand the consequences of this decision.
If you and/or child do not agree with the recommended treatment or care, you can refuse it, even if you have previously given your consent. You should always discuss your concerns with your healthcare professional. He or she must clearly explain the consequences of your decision. If your decision to refuse or stop treatment would endanger your child, the healthcare professional must make that clear to you.
The law gives both the healthcare professional and parents an important role in protecting the interests of a child. If they disagree about treatment, the healthcare professional may ask the court to decide whether the child should receive it.Are there medical interventions that you or your child definitely do not want? In that case, it’s best to write that down in a signed statement of your wishes and preferences. An example of that is a ‘Do not resuscitate’ order. You should also discuss these wishes with the doctor managing your child’s treatment.
A child can register as an organ donor from the age of 12 years, but parents can still refuse organ donation after death if the child is younger than 16. If your child has registered that he/she does not want to be a donor, that decision cannot be reversed by you or by medical professionals.Does your child have a written statement about which medical interventions he/she wants and does not want (a living will) or proof of donor registration? Give the managing physician a copy.
Healthcare consumers have the right to a second opinion: advice or evaluation from an expert other than the child’s healthcare provider. You and/or your child are always entitled to ask for a second opinion. There is no need to ask the child’s doctor for permission, but it’s a good idea to talk to him/her about it. The person who gives a second opinion does not take over treatment.
You and/or your child can ask for a second opinion from another therapist working at the Princess Máxima Center or elsewhere. You and/or your child can also ask your child’s managing physician to ask for a second opinion from a particular expert in the Netherlands or another country.
You and/or your child can ask for a second opinion at different times, for example when you have to make an important decision about treatment or if you have doubts about a diagnosis or recommended treatment.Before you ask for a second opinion, discuss this with your healthcare insurer. The insurance company may not cover the cost of obtaining a second opinion, in which case you will have to pay for this yourself.
It may happen that you or your child are not completely satisfied with the care or service you receive at the Princess Máxima Center. If so, please let us know as soon as possible so that we can work with you to solve the problem. That will also help us to improve quality for all patients and their families.
If you or your child are not satisfied, we suggest that you talk to your child’s managing physician about this and try to find a solution together. If that conversation doesn’t deliver the results you are looking for, or if you would rather raise your complaint elsewhere, you can lodge a formal complaint in accordance with the Dutch law regarding healthcare quality, complaints and disputes (Wet kwaliteit, klachten en geschillen zorg, Wkkgz).
To make a formal complaint, contact the Complaints Mediation and Patient Support department at University Medical Center Utrecht, which also serves the Princess Máxima Center. You can reach the department by phone from Monday to Friday (8:30–12:00 and 13:00–17:00), tel. 088-7556208 or 088-7558850. The staff there can inform you about the courses of action available to you. The department also has mediators who will work with you, your child and the people involved to try to resolve the problem. Alternatively, you can file your complaint using the Complaint Form here.
We handle your child’s personal information with the utmost care. Naturally, we comply with all legislation relating to privacy, including the European Union’s General Data Protection Regulation (GDPR).
You and/or your child have to right to see the child’s medical records, in full or in part. Notes made by healthcare professionals to guide their work are not part of these medical records.
Who has the right to see a child’s medical records depends on the child’s age, in line with the rights relating to informed consent. Parents have the right to see the medical records of their children younger than 12, children aged 12–16 can see their own records and so can their parents, and children aged 16 or over have the exclusive right to see their medical records.You and/or your child can receive a copy of the child’s medical records. We charge a small fee for this service.
A person who has given such permission may later ask you to delete a photo, video or sound recording that includes their picture, voice or name. We expect you to do so immediately.
You are, of course, entitled to share your thoughts about the Princess Máxima Center via social media. Indeed, we welcome that. We trust that you will not post anything that could harm other patients, their parents or employees of the Princess Máxima Center.Please think carefully before you post photos, videos or sound recordings on social media. You need to make sure that no other patients, parents and employees (or their names) are recognizable or can be heard in the material you post. If they are, you must ask for and obtain their permission before sending out your post. If a person gives this permission but later changes their mind, we expect that you will immediately delete the post with material identifying that person.