Rights and duties

You and your child have the right to information in plain, understandable language. Only if you and your child are well-informed can you actively address and make decisions regarding your child's treatment. The care provider must always inform you and your child in a personal interview. Any additional information can be provided in writing. The pedagogical staff, for instance, will help you explain things to your child in an age appropriate manner.

You and your child have the right to information regarding:

• Your child's illness;
• The nature and purpose of the treatment or examination and of the procedures that will be performed;
• The consequences, risks, possible side effects and complications of those procedures;
• Other treatment or examination methods that can be considered;
• The medicines your child is prescribed and their potential side effects and complications;
• The consequences of not being treated or examined;
• The aftercare.

This keeps you and your child informed at all times of what action will be taken and you can make an informed decision together with the care provider. Is there anything you and your child do not understand? Or is there anything you can't remember? Do not hesitate to ask.

If you and/or your child would rather not receive certain information, you or your child may refuse that information. If, for example, you or your child do not want to know whether there is an increased likelihood of a genetic predisposition (hereditary disorder) you and your child have the right to refuse that information. Nevertheless, if the care provider believes your refusal will have serious implications for you, your child or others, the information will still be provided.

Your child may only be treated or examined if you and/or your child have given permission. The Dutch Medical Treatment Contracts Act (WGBO) makes a distinction based on the age of the children:

• Up to 12 years of age: parents (or guardian) decide. Children under the age of 12 cannot decide for themselves; however, the situation and planned interventions should be explained to young children in a way that they can understand.
• 12 to 16 years of age: both parents (guardian) and child must give permission. Generally speaking, children from the age of 12 can oversee their own situation and have their own opinion. In principle, the child's opinion is determinant.
• Over the age of 16: children have the right to decide. Children 16 years and over are equal to adults (emancipated) and make their own decisions. Parental (guardian) consent is not required and the parents (guardian) will not receive any information about their child if the child does not give their permission.

Some children aged 12 or over are unable to decide for themselves on their treatment, for example if they are slow in development or are unconscious. These children are considered 'incapacitated'. In such instances, the parent (guardian) has to decide.

No one can simply be considered incapacitated. Children from the age of 12 are legally competent, until proven otherwise. The doctor is the first to determine whether or not your child is competent to make a particular decision about the care or treatment. However, the doctor does not make that decision on their own but rather decides together with other practitioners. Family members or other people in your child's surroundings can also have a say and give their opinion.

A few characteristics guide the doctor in determining whether your child is incompetent. In general, incapacity to act applies if your child cannot understand the information about the disease at that point in time and therefore cannot make a good decision regarding treatment and can no longer consider the consequences.

If you and/or your child are against a treatment, care or medication, you are entitled to refuse, even if you have already given permission. Always discuss your doubts with your care provider. The care provider must advise you regarding the consequences of your decision. You might not want your child to be treated (anymore), whereas it is a dangerous decision for your child. In that case the care provider must explain this to you in no uncertain terms.

According to the law, the care provider plays an important role, in addition to you, in representing the interests of your underage child. Should there be a difference of opinion regarding treatment, the care provider has the option to ask the court to assess the importance of the treatment for your child.

If there are any treatments that you or your child is emphatically against, it is recommended to record them in a living will (or will). An example here is a 'do-not-resuscitate order' (DNR). Also discuss this with the treating specialist.

Children from the age of 12 can register as a donor. Up to the age of 16, parents have the right to refuse organ donation upon their child's death. If your child is registered as a nondonor, this decision cannot be reversed by you or the practitioners.

If your child has a living will or proof of donor registration, please present the document to the treating specialist.

At the Princess Máxima Center, all important policy decisions are discussed in the multidisciplinary tumor boards. This means that policy decisions are never made by a pediatric oncologist alone. This does not alter the fact that parents/children are entitled by law to a second opinion.

• In principle, when a second opinion is requested, the primary practitioner will confer with the parents/child to determine the purpose of the second opinion in order to get the best advice.
• Parents/children are free to request a second opinion without consulting the primary practitioner.
• Parents/children in the Princess Máxima Center always have the right to request a second opinion from another pediatric oncologist at the Princess Máxima Center.
• Parents/children in the Princess Máxima Center always have the right to request a second opinion from another center (also abroad).
• Pediatric oncologists at the Princess Máxima Center always help in requesting a second opinion abroad:
1. The pediatric oncologist will help you choose a center with the right expertise.
2. The pediatric oncologist advises on the possible risks of a second opinion provided by an international colleague with insufficient expertise or of dubious quality.
3. The pediatric oncologist provides the desired information (medical file, letters, etc.)

In principle, the costs for a second opinion are reimbursed by the health insurer. The primary practitioner advises parents/children to consult with the health insurer prior to requesting a second opinion. Should the health insurer not reimburse the costs of the second opinion, the Princess Máxima Center will help to find a solution.

Responsibilities
At patient level, the primary practitioner is responsible for compliance with the parents'/children's right to a second opinion and free choice of doctor. The involved clinical director is responsible at department level.

You or your child may not be completely satisfied with the care or service you are provided at the Princess Máxima Center. Please let us know as soon as possible so that we can solve the problem together. That will also help us improve the quality of our care for all patients and their families.

If you or your child wishes to submit a complaint, you can contact the ombudswoman. She will strive to find a solution together with you, your child and all other parties involved.

The Princess Máxima Center has a complaints procedure in place, in accordance with the Dutch Healthcare Quality, Complaints and Disputes Act (Wkkgz). It describes how the Máxima Center handles and records indications of dissatisfaction and complaints. The ombudswoman can advise and inform you about the complaints procedure. Here, you can view the flowchart 'procedure for dissatisfaction and complaints.'

The ombudswoman can be reached daily on telephone number 0650006416 or by email: ombudsvrouw@prinsesmaximacentrum.nl. You can also drop by the office of the ombudswoman located in room 009 in the LATER outpatient clinic on the ground floor. The two ombudswomen are: Liesbeth Smulders and Elise Steenbergen-Amoraal.

An unforeseen incident might occur in the Princess Máxima Center. You can report this incident via a claim form. We will respond by email within 5 working days with more information regarding your claim settlement.

Property damage claim form
Personal injury claim form

We treat your child's personal particulars with the utmost care. It goes without saying that we observe all statutory regulations, including the General Data Protection Regulation (GDPR). Peruse our privacy policy here.

You and/or your child have the right to read the medical file. You/your child might want to read the entire contents of the file or only certain information. The medical file does not contain any personal work notes of the care providers.

Here too: Up to the age of 12 you have right of perusal, between the ages of 12 and 16 your child and you both have right of perusal, and from the age of 16 your child has right of perusal. Perusal applies partly at the discretion of the care provider.

You and/or your child may also receive a copy of the medical records.

Your child's medical file includes all information about all the care your child has received, not just medical care. We keep this file for 15 years after your child has been declared cured or their treatment has ended.

You are free to photograph and film yourself and your child in the Princess Máxima Center so long as no other children, their parents or (the names of) our employees can be recognized or heard. Should that be unavoidable, you must first ask them for permission and explain what you intend to do with it.

We assume that you will immediately delete someone's name, picture, video clip or sound recording upon their request despite their initial permission.

You can of course let us know your opinion of the Princess Máxima Center via social media. In fact, we welcome it. We assume that you will not post anything that could harm other patients, their parents or employees of the Princess Máxima Center.

You may not simply publish pictures, video clips and sound recordings that you have made in the Princess Máxima Center on social media. The same rules as described above apply to posting pictures, video clips and sound recordings on social media: make sure that no other patients, parents or (names of) our employees can be recognized or heard.

Should that be unavoidable and you still want to post the picture, video clip or sound recording on social media, you must request explicit permission from the person or persons in advance.

Furthermore, the Princess Máxima Center requires that you immediately delete someone's name, picture, video clip or sound recording upon their request despite their initial permission.

The Whistleblower procedure is in place for reporting suspected abuse within the organization of the Princess Máxima Center. Suspected abuse can be reported to the confidential adviser Nathalie Studt.