Choosing where to live, appointing someone to speak on your behalf and specifying the care you want are three different steps. In Luxembourg, distinguishing between them helps safeguard an older person’s wishes as their health or ability to express themselves changes.
This question was at the centre of the third Ethics Day organised by nine Luxembourg care providers, including Servior, Elisabeth Senior and the Fondation Jean-Pierre Pescatore. RTL Lëtzebuerg’s report looks at the difficulties that can arise when someone refuses to move into a care home, or when their wishes regarding treatment have to be interpreted later. The tools provided for healthcare decisions offer guidance, but they are neither an admission contract nor a general mandate covering every aspect of life.
Refusing to move into a care home: a separate question
Admission to a residential care facility concerns where someone lives and the organisation of their day-to-day life. An advance directive, by contrast, allows people to state their wishes in advance regarding medical care, including certain treatments at the end of life. A trusted person also has a role in healthcare: they represent the patient when the patient can no longer exercise their rights relating to their state of health.
These documents therefore do not automatically appoint the person who can sign a residential care contract or decide on a move. In its report, RTL describes questions raised by professionals about difficult admission situations. This is not an announcement of a new general rule. For residents and their relatives, the first thing to remember is not to confuse “where to live?” with “which care to accept?” or “who will make my wishes known to the doctor?”.
Anyone wishing to prepare for these issues can discuss them separately with their relatives and the professionals concerned. The conversation can clarify what they mean by staying at home, moving into a residential facility or receiving certain treatments. It can also help prevent a document drawn up for one purpose from later being wrongly taken as an answer to every decision.
The trusted person: a spokesperson on healthcare matters
A trusted person is not simply someone who accompanies a patient to appointments. According to Guichet.lu, they represent the patient and can exercise their healthcare rights when the patient is no longer able to make decisions relating to their state of health. By contrast, an accompanying person assists someone who still takes part in those decisions.
The appointment is made in writing, dated and signed. Guichet.lu recommends preparing three copies: one to keep, one to give to a doctor so that it can be added to the medical record, and one for the person appointed. It is also advisable to discuss one’s wishes with them: the role will be more useful if they know the values and preferences the person wants respected. Under the procedure outlined by Guichet.lu, the person’s prior agreement to being appointed is not compulsory, but a discussion is preferable.
The appointment can be revoked at any time in writing, with a date and signature. The people who have the previous version, such as the former trusted person or the GP, must then be informed. This practical step prevents outdated instructions from remaining in files or with relatives.
An advance directive sets out wishes about care
An advance directive allows people to state in advance their choices regarding medical care and treatment, particularly in an end-of-life situation. It is distinct from end-of-life provisions, which concern the circumstances in which someone wishes to request euthanasia. The Médiateur Santé explains that the two documents serve different purposes: end-of-life provisions must be registered with the Commission Nationale de Contrôle et d’Évaluation; registration is not required for an advance directive or for the appointment of a trusted person.
The Médiateur Santé explains that if a patient is unable to express their wishes, the care provider seeks to establish their presumed wishes. They may draw on a written statement, the trusted person or a relative. In a medical emergency, if the patient’s wishes have not been established, the urgent medical measures required by the situation may be taken in the patient’s interests. This framework gives written statements and relatives’ accounts a role, without reducing the decision to an isolated reading of a form.
Planning ahead without fixing every future decision
The third Ethics Day also addressed how to interpret an advance directive when someone has subsequently developed dementia. RTL reports the dilemma discussed by doctor Frank Jacob: how should a previously written wish be taken into account in the face of a situation and a personality that have changed? The debate underlines the value of expressing wishes as clearly as possible and choosing a trusted person who understands their context.
This does not mean that a dementia diagnosis renders everyone incapable of making decisions, or that a professional can automatically disregard an advance directive. The question must be addressed in light of the patient’s actual situation and within the framework of their rights. For relatives, a useful step is to find out which documents exist, who holds them and what each one covers.
The official information on Guichet.lu sets out the appointment procedure and forms. The Médiateur Santé explains how professionals establish a patient’s wishes when they can no longer express them. These resources can help prepare a discussion with the people concerned and the care team, but do not replace that conversation. A person’s wishes are easier to understand when the documents are accessible and precise, and are accompanied by a discussion of what they mean.
References
- RTL Lëtzebuerg, “Drëtten Ethikdag: Wien decidéiert, wéi ech am Alter liewen?”
- Guichet.lu, “Appointing a trusted person”
- Médiateur Santé, “The patient’s (presumed) wishes”
Heisdorf Castle, used as a retirement home, and its extension in July 2019. Illustrative photo.
