If you are a patient in Luxembourg, it is important to know that you have full control over how much information you receive about your own health.
Under the Law of 24 July 2014 on patient rights and obligations, every patient can explicitly request not to be told their diagnosis. As lawyer Jean-Jacques Schonckert explains, the law states you have “the right to be kept in ignorance”, provided you make this wish clear to your doctor. This is not something a doctor can decide for you – the request must come directly from the patient.
Therapeutic exception
However, there is one significant exception to this right. If a doctor believes that telling you your diagnosis could cause you serious harm, they are allowed to withhold this information in order to protect your wellbeing.
This safeguard, known as the “therapeutic exception”, is meant to ensure that sharing certain details does not negatively impact your health. In such cases, the doctor must carefully assess whether sharing the information would do more harm than good.
When a physician invokes a therapeutic exception, information about the patient’s health may still be accessed by another physician involved in the patient’s care, including one chosen by the patient. That second physician may decide to lift the therapeutic exception if they consider that withholding the information is no longer, or was never, justified.
There is one further exception to a patient’s right to remain uninformed. If failing to inform the patient about certain details could endanger their own health or that of another person, the healthcare provider is required to disclose this information.
For example, if a patient is suffering from a serious contagious disease, the doctor has a legal obligation to ensure that both the patient and potentially affected individuals are adequately informed, even if the patient has previously requested not to know.
Appointing a trusted representative
Luxembourg law also allows you to designate a ‘personne de confiance’ (“trusted person”) who can act as your spokesperson if you become unable to make decisions or understand the information provided. As Schonckert points out, this person is appointed in advance and steps in only if you lose capacity.
You are not required to choose a family member, your trusted person can be anyone you wish, and their authority will take priority over your family’s if you have named them. Remember, this must always be set down in writing for it to be legally valid.
Aside from naming a formal representative, you are also entitled to bring an accompanist to your medical appointments. This person’s main role is to provide emotional support – to “hold your hand”, as Schonckert puts it – rather than to receive detailed medical updates.
Unless you have given written permission, your accompanist will only receive very limited information from your doctor.
Access to your medical records
When it comes to medical records, the rules are clear: only you, as the patient, have the automatic right to access your file. “The only person fundamentally entitled is the patient themselves”, Schonckert stresses.
Family members do not have any default rights to your medical information unless you specifically grant them access. If you lose capacity and have not appointed a trusted person, then the court will name someone to act on your behalf.
Schonckert strongly advises that every decision and every appointment of a trusted representative is documented in writing: “Everything needs to be set down in writing, otherwise you risk confusion or even abuse – something that is simply not acceptable.”
