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Rarely has the issue of freedom been as topical as during a global pandemic. Seldom has every individual appreciated freedom so much. However, few people think about the fact that freedom is no longer a given in old age. How are measures involving deprivation of liberty dealt with in Luxembourg's retirement homes? And why is there no law to regulate how they are dealt with?
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On May 22, 2015 Françoise Seyler is finally allowed to visit her mother in the new nursing home. For "acclimatisation", as the Family Ministry had informed her, she was to leave her mother alone in her new surroundings for ten days beforehand. Françoise Seyler, who had lived with and cared for her mother at home for seven years, complied reluctantly. When she enters 85-year-old Irène Seyler's room on Friday evening, she can hardly believe her eyes. Her mother is lying apathetic in bed, in a completely darkened room. She is unresponsive, her stomach is bloated.
Irène Seyler, who was diagnosed with moderate dementia in 2008, had peeled potatoes with her daughter shortly before moving in. Although she had been in a wheelchair since a knee operation, according to her daughter she was still able to entertain herself, wash herself and eat alone. On May 11, 2015 the nursing home's care file still recorded "Mme sits in wheelchair during the day (…) She stands up independently as instructed", then later in the evening, "Resident sings and dances in wheelchair to music". Ten days later, on May 21, 2015, nurses recorded: "Resident is no longer able to stand up with help, does not react properly to being spoken to and seems very absent, resident can no longer hold things properly and also has difficulty lifting the glass to drink".
Françoise Seyler will later learn that her mother had already been under the influence of sedating medication for ten days at that point. More precisely: Haldol, a highly potent neuroleptic that is used to treat acute and chronic schizophrenic syndromes. However, neuroleptics are also used in elderly care – usually when a person needs to be sedated. "This is usually the case with people suffering from dementia. In such cases, neuroleptics are prescribed for states of agitation, for restless behaviour, sometimes also because of an altered day-night rhythm", explains Anja Leist, psychologist and associate professor at the University of Luxembourg, whose main focus is currently on risk reduction of dementia. If neuroleptics are prescribed in the context of care for the elderly, their use falls under the broad term of so-called measures involving deprivation of liberty, or FEM (german: "Freiheitsentziehende Maßnahmen") for short. Provided that their purpose is to restrict freedom of movement. "When administering neuroleptics, it is not always possible to clearly distinguish whether there is a deprivation of liberty or only a side effect of a necessary treatment of symptoms, " Leist explains. However, in the case of treatment with neuroleptics, the encroachment on fundamental rights is even more serious than other FEM, at least according to German law, since the physical integrity of the person affected is also impaired.
Fixation of the persons concerned by means of mechanical devices:
- Preventing people from getting out of bed by using bed rails or special protective covers, bed aprons
- Sitting trousers in which the affected person can no longer leave the chair or wheelchair
- Putting on handcuffs, ankle cuffs or body restraints
- Putting on seat belts, body belts or abdominal belts in bed or (wheel)chair
- Putting on protective blankets, sheets or sleeping bags
- Putting on safety belts on the (wheel) chair
- Strengthening of therapy/stretching tables on the (rolling) chair
Locking up the people concerned:
- Hard to open doors
- Locking a resident's room door
- Locking of the exits known to and usable by the resident
- Illusion about existing locks on doors
- Preventing people from leaving the facility or the ward by using particularly complicated locking mechanisms (e.g. trick locks or number combinations) or by temporarily locking the entrance door during the day or at night without giving the person being cared for a key or otherwise ensuring that the door can be opened.
- High mounted door handles
- Turn knobs
- Secured lifts
Sedating drugs such as:
- sleeping pills, neuroleptics, and other psychotropic drugs, if given:
- to prevent the resident from moving around the facility or from leaving the facility
- to facilitate care
- to establish calm on the ward or in the home
- Locking the wheelchair
- Restraint at the entrance by the staff
- Taking away the clothing and shoes of the residents
- Taking away the means of locomotion (e.g. wheelchair, walking frame)
- Removal of visual aids
- By exerting psychological pressure and using prohibitions, trickery, coercion and/or threats
- Prohibition to leave the room, the ward, or the house
- Electronic measures (transmitter attached to clothing, shoe, or wrist) - debatable
Seyler had expressly requested that her mother should not be given any sedative medication when she moved in. In 2012, Irène Seyler had a reaction to a drug from the neuroleptic family (Rispedal) after a knee operation. The nursing home did not take into account the urgent wish to avoid a repetition of this experience. The reason given by the prescribing doctor for the prescription of Haldol was that Irène Seyler had exhibited aggressive behaviour. Because she did not like strangers touching her, she apparently became hostile towards the nurses. A circumstance that could have been handled differently through contact with her daughter, the latter believes.
Françoise Seyler panics at the sight of her mother – and is immediately asked to leave by the nursing staff. As she returns one day later, her mother's condition is unchanged. After several requests, the nursing home calls an ambulance. At the hospital, Irène Seyler is diagnosed with anorexia, dehydration, and somnolence (a sleepy state in the form of a loss of consciousness), and later acute renal insufficiency. This is evident from the hospital discharge letter. In a later witness statement, the attending doctor also speaks of an overdose of Haldol, which she mentions as a possible reason for the kidney failure.
The reason for the dehydration can be found in the nursing home's documentation, which is available to the Lëtzebuerger Journal. Irène Seyler was given too little fluid between May 12 and 22. The documented amount of fluid during this period was between 550 ml and 1150 ml per day, between May 13 and 16 it was only 300 ml per day.
In addition, there is the questionable nature of the ten-day ban on visits for "settling in". Prof. Dr. Rolf D. Hirsch, a specialist in neurology, geriatrics, psychotherapeutic medicine, and psychoanalysis from Bonn to whom Françoise Seyler had applied for a statement on the case, writes in said statement: "The withdrawal of a close relative with whom a close relationship has existed for years is very questionable from a medical and nursing point of view". And further: "This procedure can lead to an irreversible deterioration of the psychophysical condition of a person with dementia."
The experiences of Françoise Seyler and the insights into her care file paint a worrying picture. The thematic booklet "Freiheitsentziehende Maßnahmen und Gewalt in der Altenpflege" published in 2010 by the RBS Centre fir Altersfroen and the University of Luxembourg, underlines the challenges that Luxembourg's retirement homes were already facing eleven years ago. For example, at the beginning of the thematic issue, Wolfgang Billen presents a study conducted as part of the Master's programme "Gerontology" at the University of Luxembourg. Here, for example, he writes: "The evaluation of the questionnaires of the management staff showed that Luxembourg – despite relatively high personnel and financial resources – is in the upper segment in an international comparison with a fixation rate of 53.5% and an administration of psychotropic drugs in 61.8% of the residents." There have been no new studies following this one. What the situation is now – eleven years and one pandemic later – is difficult to determine. The Lëtzebuerger Journal tries anyway.
"We are not the police. We can't stand behind every single caregiver to make sure nothing goes wrong."
Claude Siebenaler, responsible for the Department for Older People at the Ministry of Family Affairs
During the research it quickly becomes clear – in 2021 the following statement by Wolfgang Billen remains true: "There are no specific legal provisions in Luxembourg that regulate the use of deprivation of liberty measures in any way. It is not clarified who may order deprivation of liberty measures, what reasons justify the application, over what period of time the measures may be applied and what a review of decisions taken would have to look like. Since there are no guidelines for the documentation of deprivation of liberty measures, there is no possibility to control their use."
Françoise Seyler wanted to petition for a change in this situation. In order to prevent other people from suffering the same fate as her mother, she believes that a law is needed that precisely regulates the use of FEM, as is the case in Germany, for example. In February 2021, she submitted petition 1751 "for a strict ban on sedation (restraint, former strapping) and a more humane healthcare system for vulnerable people in institutions in Luxembourg", so that "the health and well-being of the residents are the priority, not profit".
Whether and which FEM are applied to patients is currently at the discretion of the home – just as the handling of the pandemic is at the discretion of the respective nursing home. There is no independent control authority. On-site controls are difficult, Claude Siebenaler admits. He is in charge of the department for the elderly at the Ministry of Family Affairs. "We are not the police. We can't stand behind every single caregiver to make sure nothing goes wrong." Currently, he said, the Family Ministry gives homes for the elderly an accreditation (agrément) based on their infrastructure as well as their staff. In order to be approved, the home must, for example, have a certain corridor width or railings on the walls. Among other things, the staff must have a certain qualification and speak Luxembourgish. Once this approval has been granted, the ministry is no longer responsible. "That is not enough, we are aware of that", says Siebenaler. The Ministry of Family Affairs condemns every case of bad treatment of vulnerable elderly people and is committed to their protection. In order to put the promise into practice, the legislative project with the number 7524 was filed in the Chamber on February 20, 2020 and has since been on its way through the instances.
"The aim of the law is to put the person even more at the centre. The resident should be able to play an active role in his or her daily routine. Residents are also to have the right to an ethics committee in the home. Until now, this was not an obligation", says Siebenaler. Currently, it is up to each nursing home whether it has such a monitoring committee or not. "We are currently considering whether these compulsory ethics committees should also be interrelated, i.e., quasi-covered." In the last 13 months, he said, the Ministry of Family Affairs has learnt an enormous amount and they are also taking the criticism of the Human Rights Commission into consideration. The pandemic has led to further improvements in the draft law. He could not yet say when the latter would be passed.
However, one section of the law is already clear: training in psychogeriatrics is to become compulsory for employees in nursing homes. These are already being offered in cooperation with the RBS – Center fir Altersfroen. "Dealing with deprivation of liberty is an everyday topic in care", says Alain Brever, director of the RBS. In this context, he says, it is important to be aware of which persons are affected. In retirement homes and structures that treat elderly people, such measures are only used "if at all" for people suffering from dementia. Luxembourg's retirement homes have around 30 per cent of people suffering from some form of dementia. "Of these 30 percent, not everyone is in a situation where FEMs could be applied", Brever emphasises. If this is nevertheless the case, the reason is usually fall prevention. "The person with dementia doesn't know that they will fall when they stand up." If they try to stand up because they feel unwell and fall, that is the worst thing that can happen in a nursing home. "It is statistically proven that the path from a fall to a hip prosthesis or further loss of mobility is not far. Up to even death." After a fall, a vicious circle of hospital stays and justifications in front of the family usually begins. In addition, the current quality indicator in Luxembourg measures the quality of care by the frequency of falls. All staff working in a nursing home is always trying to prevent everyone from falling. According to Brever, a FEM is always the last resort.
"It's not enough to say we're going to open all the doors, end all the FEM and leave people to their own devices. It's about protecting people."
Jörg Bidinger, gerontologist
Jörg Bidinger was himself one of the authors of the thematic booklet "Freiheitsentziehende Maßnahmen und Gewalt in der Altenpflege" in 2010. He still works as a gerontologist at the RBS today. "It's not that nothing happened after the study we did eleven years ago in cooperation with the University of Luxembourg, " he emphasises. Just because there is no law in Luxembourg does not mean that such measures are used inflationarily. It's more complicated than that: "It's not enough to say we're going to open all the doors, end all the FEM and leave people to their own devices. It's about protecting people."
Alain Brever on further training in the field of care for the elderly
Much more important than a law would be the training of staff, as is currently the case in the law project. Nurses need to be informed about what FEM are and what makes them necessary. "With the help of alternative programmes, they learn how to reduce the frequency of FEM. Because they work with the person, for example, to build muscle strength to reduce the risk of falls in the end." The National Dementia Plan which came into force in 2013, therefore includes awareness-raising work for homes in addition to raising awareness among the population. The "Psychogeriatrics" training is aimed at 40 per cent of the staff of inpatient and semi-inpatient institutions and provides a basic knowledge of what dementia is, how to communicate better with people suffering from it and how to deal with challenging behaviour. "If I know this as a staff member, I won't get into a situation so quickly where I don't know how to get out of", says Bidinger. Additionally, the RBS offers courses such as fall prevention, but also resilience against mental stress in everyday life at the workplace, in order to improve the stress management of employees in retirement homes. "In this way we can contribute to reducing the use of FEM."
Jörg Bidinger on measures involving deprivation of liberty and their alternatives
The gerontologist is also not aware of any study according to which a legal regulation has led to a reduction of FEM. However, there are studies that show that trained personnel lead to such a reduction. RBS director Alain Brever asks the question: "If it is written into the law and the judge says the person can be strapped in, is it less bad? "Whether it is the nurse, the management, a doctor or ultimately a court that makes the decision, "it is a big responsibility to use a FEM and it should be the very, very last measure". However, in his opinion, a law can have a complementary effect and provide security: "It can be helpful for the carer, the senior and their family. It can strengthen the carer's back against the management, the family or the ministry in case of a case."
For her part, Anja Leist is in favour of a law that regulates the use of FEM. "This would prevent the unnecessary use of restraints in individual cases and create safety for both relatives and caretakers. According to her, training in combination with a law would be ideal. Whenever reports emerge of relatives whose family members were subjected to FEM against their will, such as in the case of "Blannenheem" or the case of Irène Seyler, this shows that a law would be the right solution. "Also, to give caretakers and doctors the certainty that any measures take place ethically and legally within a secure framework." The researcher is convinced that "for every seeming reason for FEM, there is an alternative that ensures that these measures do not have to be used."
Innovation in care for the elderly
In recent years, Alex* has observed how innovations are increasingly facilitating the work in nursing homes. One example is the so-called patient lift, which helps to lift people out of bed. "This results in much fewer injuries to staff. And people have more freedom." What he particularly appreciates is the value Luxembourg places on further training. Only recently, he himself attended a course on suicide, end of life and neuroleptics.
Alain Brever mentions alternatives to a bed rail, such as carpets that trigger a signal to the caregiver when the person gets out of bed. Institutions could meanwhile order care beds that are almost on the floor and from which one can hardly fall out. This gives the resident the freedom to get out of bed without risking injury if they fall out. There are also watches with integrated GPS: "There are many people with dementia who are physically fit and can find their way out of a building but would certainly not be able to find their way back into the home", says Brever. In order to track someone, a relative has to sign a document that allows it.
Anja Leist also observes innovations abroad. In the Netherlands, there are so-called Snoezle rooms. This is a physically limited space, equipped with soft materials and gentle music. It is like a cuddle cave where people can calm down. The Alzheimer's Society in England recommends a hugging doll to hang around your neck. This also has a calming effect on people who are particularly restless due to dementia.
The Ministry of Family Affairs is having a hard time answering the question of anchoring the regulation of FEM in a law. "The law should later contain a 'concept de bientraitance'. 'Maltraitance' should preferably be something that no longer exists", says Claude Siebenaler. "The question is, how far does something have to be spelled out in a law all the way down, and how far does the administrator of the institution have to retain certain freedoms?" After all, homes where people with dementia live would have different conditions than others. The issue of FEM has not yet been written down, but is open for discussion, he says. "We are ready to take a step forward. People deserve absolute respect", Siebenaler emphasises.
Better complaint management
To ensure that in future it is clear to whom people can turn if they find that FEM have been abused, a "gestion des réclamations" is also included in the legislative project. According to this, every nursing home must set up a complaints management system. Those who do not receive an answer there should report to the ministry. "We are continuing to think about what else we as a ministry can set up to offer people more options in this regard."
"For every seeming reason for FEM, there is an alternative that ensures that these measures do not need to be applied."
Anja Leist, researcher at the University of Luxembourg
Anja Leist is critical of the fact that, due to various circumstances, nursing homes would need the freedom to determine their own functioning. "It would be nice if the same standards were created for all residents of nursing homes. The guidelines would have to come from the family ministries, " says the researcher. Even during the pandemic, she would have appreciated it if all nursing homes could have benefited from the creative solutions, some of which were found by individual homes. "We researchers at the university are always ready to help out and give our recommendations", she says, addressing the Ministry of Family Affairs.
Jörg Bidinger points out that today's situation is not comparable to that of 20 years ago. With the introduction of the Long-Term Care Insurance Act, people tend to live at home much longer. "Conversely, this means that they are in a more fragile state of health once they are in a nursing home. That can also have an impact on their cognitive state, which makes it hard to compare the data. "In the past, people went to the retirement home when they felt alone, adds Alain Brever. "It was a kind of residential community in which they sometimes lived for 30 years. Today they live there maybe for one or two years." The number of staff on a floor is also much higher now. Where there used to be one caretaker, there is now a whole team. That's why it's almost impossible to compare figures from FEM with each other.
Luxembourg does not currently have to deal with a nursing shortage (yet). "Our staffing ratio is good compared to other countries", says Alain Brever. Of course, there is always more work to do, and every nurse would like more time. "But we don't have an emergency at the moment, as is the case in other countries." Alex* also confirms this. He is a nurse on a floor where only people suffering from severe dementia live. "The communication and functionality of a team have are more important than more staff", he says.
According to Alex, there is a lack of understanding among the population about how a nursing home works. "Deprivation of liberty measures or violence in care are not just physical confrontations", he says. These hardly ever occur in reality, he says, at least he has never witnessed anyone being physically abused in his career. A typical example that does happen, however, is when a person in a wheelchair is moved so close to the table that they can no longer move. FEM are already discussed in the training of every caregiver. For family members, it is usually a difficult and emotional matter to put a relative into care. "By doing so, you admit your own weakness, that you can no longer take care of them yourself. You have to deal with the fact that life is changing and that we will all grow old one day. Giving a loved one into care means trust – and that is not always easy.
Alex observes a lack of understanding on social media, among other places. "Relatives post photos of a room where it is messy. In the comments, people then get upset about how badly their loved ones have to live in this home." While only a snippet can be seen on the internet, the reality is quite different, he says. At his workplace, he says, they try to give people as much freedom as possible despite severe dementia. After care, they go about their daily lives. "If they feel the need to clear out their cupboard, tip over a chair or move pictures, we don't stop them." The person suffering from dementia, he says, seeks comfort at that moment. "If we were constantly cleaning up after them, firstly we wouldn't be able to cope and secondly the person with dementia wouldn't be happy."
The question of immobilisation
One question that nurses are often asked is about medical immobilisation. "Nursing home staff can't decide that", says Alex. Medications that sedate people, including neuroleptics, can only be prescribed by doctors. Such sedation is very rarely in the interest of the resident and their carers. "By using such medication, the resident needs more intensive care because his mobility is reduced enormously." The process of ageing would be accelerated enormously.
"20 years ago, a retirement home was a kind of residential community in which people sometimes lived for 30 years. Today they live there maybe one to two years."
Alain Brever, direktor RBS
However, people with dementia are sometimes overwhelmed with their own feelings or put others in danger. "They are constantly nervous and live in a permanent state of anxiety." In such cases, the use of calming medication to improve their own well-being makes sense, he says. The caregiver could also observe several times how the targeted use of calming medication had a positive influence on the relationship with the family. "Some relatives didn't want to visit anymore because they didn't want to see their loved one in that condition. Or they remembered traumatic experiences before the time in the nursing home. Many dementia patients have become violent at home." A nursing home provides the necessary distance in such cases. With proper care and a routine, the person with dementia ideally feels understood.
On the floor where Alex works, most people are already on medication when they arrive. "We try as much as we can to get away from that and find out how the person functions in its purest form." As a result, each case is discussed again from month to month and the dose of medication is adjusted as needed.
However, Alex also knows the other side of violence in care. "It often happens that residents become violent. I have scars from my job, and I have colleagues who have to live with the consequences of violence from their counterpart for the rest of their lives", he says. On his floor, nurses would regularly go home with bruises, where they would have to explain to their family that it was not the fault of the person who did it. Employees who have worked in care all their lives and retire almost always with chronic physical problems. This is a fact that carers are aware of. "We know why we do it and why we still like to do our job." Even if it is unprofessional, it is unavoidable to build a relationship with the residents. If their condition deteriorates, this also has an effect on the carers' mood. The profession is not suitable for everyone, many trainees are put off, other colleagues quit after a few years. "But if the job suits you and you have the mental strength for it, you can make a nursing home a nice place where old people can spend their twilight years in peace."
The nurse advises family members to always talk to the nursing staff. In his experience, most people come out of such a conversation positively. Alain Brever also advises: "If a family member observes that the senior is absent, they should always talk to the doctor. Communication is important. The family has the right to be interested in what medication the senior is getting and what the side effects are." Alex thinks it is a pity that mostly negative feelings are associated with nursing homes. "You could encourage people a lot more with stories from the home. I know people who have learned to walk again there after being in a wheelchair for two years."
"It often happens that residents become violent. I have scars from my job, and I have colleagues who have to live with the consequences of violence from their counterpart for the rest of their lives."
Alex*, caregiver on a floor for dementia patients
A happy ending that Françoise Seyler was not allowed to experience. Her mother's discharge letter states that Irène Seyler died "suddenly after personal hygiene, probably as a result of a massive pulmonary embolism" in hospital on June 1, 2015. Three weeks after she moved into the nursing home.
It is not possible to say whether her death was due to taking neuroleptics. An autopsy was never performed. Prof. Dr. Hirsch also writes in conclusion in his statement: "It is always difficult to identify a single cause of death in multimorbid elderly people, as several factors usually interact negatively." After Françoise Seyler filed a lawsuit against Unknown in December 2015 with the aim of setting a precedent for Luxembourg, the case was dropped four years later. In March 2019, the Office of the Attorney General wrote: "In retrospect, the cause of death cannot be determined with certainty, so the question of a causal connection between medication with Haldol and the occurrence of death on June 1, 2015 cannot be assessed with certainty […]".
With 1,088 signatures, Françoise Seyler's petition may not have received enough votes to hold a public hearing in parliament, but she hopes that politicians will talk about regulating deprivation of liberty measures in care for the elderly. After six years of seeking justice, she is exhausted and angry – she feels helpless. People she meets often tell her that she cannot find peace because she cannot cope with her mother's death. "That's not true, " she says resolutely. Françoise Seyler simply wants to prevent what happened to her mother from happening to other people.
*name changed by editor