Rights and duties
What changes when your child turns 12 or 16?
As your child gets older, they have more say in decisions about their treatment. To help them do this, your child receives clear information about their illness, treatment, and what this may mean for them. Your child can also view their medical file in the patient portal and decide who may access it.
The WGBO outlines the rights and responsibilities of patients. Important parts include the right to information and the right to give consent for treatment. In English, this is called informed consent: giving permission after being properly informed. You and/or your child decide together with the healthcare professional what will happen. All hospitals and healthcare providers in the Netherlands are legally required to follow the WGBO. You can read more about the WGBO here.
Rights and responsibilities of you and your child
You and your child have the right to information in clear, understandable language. Only when you both understand the situation can you take part in decisions about the treatment. The healthcare professional must always explain things verbally and can provide written information as well. If needed, a child life specialist can help explain things to your child in a way that suits their age and understanding.
You and your child have the right to information about:
your child’s illness
the purpose and nature of the treatment or examination
possible consequences, risks, and side effects
alternative treatment or examination options
the prescribed medicines and their possible side effects
the consequences of not undergoing treatment or examination
aftercare
If something is unclear or you forget something, feel free to ask any question you may have.
If you or your child do not wish to receive certain information, you have the right to refuse it. For example, if you do not want to know whether there is an increased risk of a hereditary condition. Only if the healthcare professional believes withholding that information could cause serious harm to you, your child, or others, may they still provide it.
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 aged 12 and older can register as organ donors. Until the age of 16, parents can still refuse donation after death. If your child has stated they do not wish to be a donor, this decision cannot be reversed. Please inform your doctor if your child has a donor registration or advance directive.
In principle, you should discuss it with your lead physician if you want a second opinion. They can best advise you once it is clear what the purpose of the second opinion is. However, you can also request a second opinion without consulting your lead physician.
You may request this from another pediatric oncologist at the Princess Máxima Center or at another pediatric oncology center (including abroad).
Of course, when you request a second opinion, you will always receive support from a pediatric oncologist from the Princess Máxima Center. This physician:
helps you choose a center with the right expertise,
advises you about possible risks of a second opinion from an international colleague with insufficient expertise or of questionable quality,
provides the necessary information (medical file, letters, etc.).
CostsHealth insurers generally cover the costs of a second opinion, but it is advisable to contact your insurer in advance. If your insurer does not cover the costs, the Princess Máxima Center will work with you to find a solution.
ResponsibilitiesYour lead physician is responsible for ensuring your right to choose your doctor freely and to request a second opinion. The clinical director of the department is responsible at the departmental level.
It may happen that you or your child are not completely satisfied with the care or service you receive at the Princess Máxima Center. Please let us know as soon as possible so that we can work with you to find a solution. This also helps us improve the quality of care for all patients and their families.
If you or your child would like to file a complaint, you can contact the ombudswoman. She will work with you, your child, and those involved to find a solution.
The Princess Máxima Center has a complaints procedure in accordance with the Dutch Quality, Complaints and Disputes in Healthcare Act (Wkkgz). This procedure describes how the Máxima Center handles and records expressions of dissatisfaction and complaints. The ombudswoman can advise and inform you about this procedure. You can also view the flowchart ‘What can you do if you are dissatisfied or have a complaint?’.
The ombudswoman is available every day by phone at 06-5000 6416 or by email at ombudsvrouw@prinsesmaximacentrum.nl.
You are also welcome to stop by her office, which is located in room 009 at the LATER outpatient clinic on the ground floor.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.
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.
To provide the best possible care for your child, it is sometimes necessary to exchange your child’s medical information electronically with another healthcare provider, such as your family doctor or another hospital. We will always ask you and/or your child for permission first.
If you and/or your child give consent, we will only share the health information that is needed for treatment.
You can give consent in the following ways:
Through the patient portal
At the reception desk with a doctor’s assistant
You and/or your child have the right to view the medical record. You or your child may want to view the entire record or only specific information from it. Please note that personal working notes made by healthcare professionals are not part of the medical record.
The following applies:
Up to the age of 12, you have the right to access the record.
Between the ages of 12 and 16, both you and your child have this right.
From the age of 16, your child has this right.
This is always subject to the professional judgment of the healthcare provider.
You and/or your child may also request a copy of the medical information. To do so, you can send an email request to your lead physician.
In principle, the Princess Máxima Center keeps medical records indefinitely, as this allows us to provide continuous, high-quality care. This retention period is in line with the KNMG Guideline ‘Dealing with medical data’.
You are welcome to take photos and videos of yourself and your child at the Princess Máxima Center. It is important that no other children, parents, or staff members (or their names) are visible or audible in the recordings. If someone else does appear or can be heard, always ask for their permission first and explain what you plan to do with the recording.
We trust that you will immediately honor any request from someone who, after previously giving permission, asks for their name, photo, video, or audio recording to be removed.
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.At the Princess Máxima Center, you and your child have the right to choose your doctor freely. If you do not feel a good connection with the treating physician, or if you prefer to be treated by a specific other doctor, you can discuss this with your current physician or with the clinical director involved. You can also share your preference with the ombudswoman.
If you wish to report a suspected wrongdoing within the Princess Máxima Center organization, the Whistleblower Policy applies.
You can report your concern to the confidential advisor, Nathalie Stud, using the reporting code 0800 020 4204.At the Princess Máxima Center, we do our utmost to provide high-quality care for children and parents. Still, something can sometimes go wrong. In that case, we speak of an unexpected event or incident.
If such an event causes serious harm, we want to understand exactly what went wrong and how we can prevent it from happening again. Your treating physician or the ombudswoman will give you a leaflet with information about how we investigate incidents.
Child abuse and domestic violence occur regularly and pose a threat to the safety and development of the child. Children treated at the Princess Máxima Center may also encounter child abuse and/or domestic violence in their lives. As healthcare professionals, we are responsible for identifying situations of danger in a child's life and acting according to the KNMG (Royal Dutch Medical Association) reporting code for child abuse.
At our center, five child abuse officers are trained by LVAK (National Association of Child Abuse Specialists).
For more information, please visit the Vereniging LVAK | LVAK.At the Princess Máxima Center, we aim to provide the best possible care for children with cancer. To achieve this, we want to learn from every treatment we give and continuously improve our care. That is why we record information about treatments and care outcomes in the Netherlands Childhood Cancer Registry (NKKR).
Would you like to know what data we collect, how we use it, and who has access to it? You can read more on the Netherlands Childhood Cancer Registry here.