1 Since the early 2000s, residential institutions for dependent elderly people (EHPAD) [Établissement d’hébergement des personnes agées dépendantes] have been operating within a revised legal framework characterised by a pronounced ideological dimension. The ethics of care have been strengthened by legal values and concepts conveyed by legislation that now places the individual at the centre of medico-social care. The law of 2 January 2002 revising medical and medico-social actions [2] defines the various facets of the rights and individual freedoms that must be guaranteed to any person taken in charge. [3] The law of 11 February 2005 on equal rights and opportunities, participation, and citizenship for people with disabilities [4] introduces new concepts such as the “life project” which now applies to support for dependent elderly people in accordance with the law of 28 December 2015 on the adaptation of society to ageing. [5] These values, principles, and legal concepts are reflected in the Charter of Rights and Freedoms, a document that must be communicated to each resident and posted in each institution [6].
2 The legal framework constitutes both an injunction and a challenge for medico-social institutions such as the EHPAD. This must be a residential centre in which each individual is assisted in his or her individual project. Theoretically, the people taken in have not been placed there, but have been received of their own free will. [7] In short, we must acclimatize the institutional logic of dealing with dependence to the new paradigm of individualisation and human rights. For managers, executives and all staff involved in EHPAD, this implies an analysis of the ethics involved, but also the development of new tools to be mobilised: the contract/contractualisation of acts concerning assistance, and instruments for democratisation of the institution such as the social life councils.
3 This article reports on a study carried out in 2015 on a number of EHPADs in the Gironde region (Éloi and Martin, 2016). [8] The aim of this study was to observe and analyse sociologically the representations of actors, standards, and professional practices, in the light of the principles and rules emanating from the legal framework mentioned here. The hypothesis is that the discrepancies that can be observed between rules and practice find their source just as much in the difficulty experienced by the personnel in the transition from the culture of hospicialisation to that of the reception of a person who is entitled to certain rights, as they do in the financial and work organisation constraints to which the establishments are subjected today. In addition, the implementation of these rights and their real expression has probably been made more difficult by the fact that today such establishments reception older and more dependent persons. [9] Policies that support the maintenance of the elderly at home tend in fact to produce a certain differentiation limiting EHPADs to the specialised role of caring for those in a high degree of dependency. In this context, what meaning can individualisation and human rights have?
4 Three themes have been selected here that constitute as many challenges for the actors as for the beneficiaries of institutional care: the theme of personal consent; the theme of personalised support; the theme of freedom in everyday life, which will lead us to some concluding thoughts on the institution and on “collective living”.
Consent: a legal fiction?
5 Legislation requires medico-social establishments to try systematically to obtain the informed consent of the persons admitted, when they are able to express their will, and to participate in the decisions on admission as well as on any act relating to their care. The law states that failing this, they must obtain the consent of the legal representative. It is the law’s function to adopt the objective that the definition of the act or event constituting admission into the EHPAD is the objective expression of the will of the individual. Nevertheless, one should note that the texts speak of “trying to obtain” rather than actually obtaining consent, which suggests that we are above all in a process that has been formalised in principle but in reality remains uncertain and fragile (Tacnet-Auzzino, 2009).
6 Is this pure legal fiction? A strict answer must be in the negative, because one cannot assume that an elderly person has consented to admission and care in an EHPAD. Nevertheless, it is possible to question the degree to which circumstances and specific situations in many cases impose consent by the person. Particularly when it comes to the decision to apply for admission to an institution, consent may seem more like resignation. However, this does not mean that the institutional requirement to seek consent is a mere formality. Particularly for the nursing staff, our study has shown, on the contrary, how much it constitutes an essential element of the ethics of caring.
Admission to an EHPAD. Resigned consent
7 It is not easy to know to what extent an individual has consented to admission to an EHPAD. However, we do have some indicative data on the degree of participation of the person concerned in this decision. Out of a panel of EHPAD residents surveyed on this point, 60% said they had been involved in the decision to ask for admission to an institution, either alone (26% of the total) or with someone else (34% of the total). 40% say they were not involved in any way in this decision, which was made by family and friends (25% of the total) or by social services (15%). [10] These data question the effectiveness of legal norms establishing the principle of freedom of choice and prescribing the participation of the person in decision-making. What the qualitative approach shows, on the one hand is that, while the circumstances surrounding the individual decision may vary, the EHPAD is generally a response to social isolation. On the other hand, this demonstrates the establishment of contacts upstream as much as possible in order to obtain the consent, if not an actual endorsement by the person and/or his entourage. Nevertheless, as far as borderline cases are concerned, practices are still quite trial and error or even improvised, when it comes to ensuring the consent of persons whose cognitive capacities are impaired.
The weight of circumstances on the individual decision
8 The general opinion expressed by managers is that admission to an EHPAD is rarely a choice. This is also the opinion of the nursing staff: “They [the residents] perceive the institution as something difficult, confining.” [11] “There are some who do not want to be there and say so.” [12] It is certainly a voluntary act in cases in which the elderly person has made the request directly, but this is often determined by the search for security. Many older people face the problem of isolation and experience loneliness. A director interviewed gave his point of view on the issue:
9 “When dependency is synonymous with loneliness and depression, admission to an EHPAD and resocialization bring an improvement.” A psychologist from a public institution indicates that people who are still relatively young and not dependent and who apply for admission to an EHPAD are often people who suffer from depressive disorders.
10 In general, the circumstances surrounding admission to an EHPAD influence individual freedom of choice. However, there are variations, depending on the mode of transition and access to the EHPAD. In cases of transition from home to an institution, the concerned individual who is either isolated or assisted by the family may have made the decision. Often, the elderly person then says he or she is aware of the excessive burden that he or she now represents for caregivers, which motivates the request for admission to an EHPAD. The transition from hospital to nursing home is most often organised by the social services of the hospitals. The urgency of such situations means that admission results more from a form of agreement between the beneficiary’s family and the institution’s management than from a voluntary initiative on the part of the person, even if it is also occasionally possible to find situations in which the person is involved (Guichardon, 2005).
Soliciting admissions: personal contacts and preliminary visit
11 Institutions systematically offer a preliminary visit to the interested parties and/or their families. The psychologist of a public institution in a rural area even indicates that, as much as possible, they make a preliminary visit to the home of people who have made a request. She says, “Our recipe is to visit people at home, that’s where we have consent.” She notes in passing that people often live in homes that are uncomfortable or not adapted to their disability. In these circumstances, admission to an EHPAD can have what this psychologist calls “a secondary benefit”. Some managers particularly appreciate the visit as the first contact with the person. One of them has indicated, “direct contact with the person is an opportunity for providing education and guidance”. Sometimes, this pedagogy consists of seeking the older person’s adherence to the values and project of the institution. This particular case may arise when the institution is of a denominational nature—we visited one—and there is a certain conception of community life advocated. More generally, the director will seek to ensure that the person is well oriented and “fits the desired profile”. In this case, the visit and the first contact are necessary elements in the formation of what could be called mutual consent: the elderly person chooses his structure, but the structure also chooses whom it admits.
12 There is, of course, a difference between the private, for-profit EHPAD, which hypothetically hosts a selected clientele, and the public EHPAD, that is resolutely committed to a public service mission and can hardly make any screening decisions. Nevertheless, there is a certain generalisation of the idea that admission to an EHPAD has a bilateral and contractual dimension, even if not all supervisors and managers attribute the same content to this concept or, in any case, admit that there is asymmetry in the relationship and little room for mutual choice. One director indicated that if she detected reluctance linked to the fact that her EHPAD (in this case, a public one) did not correspond to the desired standing, she referred the person concerned to another institution, a private one, if necessary. She emphasised the search for consensus on both sides at the stage of the decision to request admission to an EHPAD and evoked the idea of a “shared project”. The fact remains, however, that the choice of institution based on standing is very much dependent on the financial resources of the person concerned. In this respect, it is clear that freedom of choice is not exercised equally and that social inequalities are manifested here. A care director of a public EHPAD gave her analysis on this point:
“The elderly do not have the choice of institution according to the quality of the service; the choice of establishment is made exclusively based on the cost while the obligés alimentaires [those who have the legal obligation under French law to support their parents] are being suffocated. We have personal dramas. There are elderly people who feel very guilty because they force their children to co-finance the EHPAD.”
Evaluate the expression of consent in borderline cases
14 In legal terms, prior contacts, visits, or pre-visits are pre-contractual elements necessary for the free and informed consent of the person concerned. However, admission to the EHPAD cannot be reduced to this strictly contractual perspective. In reality, those responsible for admission to an EHPAD [13] must make an overall assessment of the situation, seeking a balance between the individual’s consent, the family’s position, and health and safety requirements. The fact is that EHPADs admit more and more dependent people, including a varying but not negligible proportion of people suffering from cognitive disorders. It is obvious that such cases in particular pose the problem of consent. Not surprisingly, supervisors and managers all say that they do not admit fully lucid persons who refuse admission to an EHPAD even when the family requests it. The situation of the admission of persons whose mental faculties are impaired is more complex.
15 A director explained her position for cases—about 20% in her institution—of admission of people with Alzheimer’s disease or related disorders. She confided that in these cases, consent was not really expressed, and even that some people expressed their disagreement. The interviewee considered that this was a transgression of the limits of legislation. It should be noted that, in this case, she was not referring to reliance on the agreement of a legal representative or of encouraging the family to organise a system of judicial protection. When someone’s safety is at stake—in the event that he or she remains at home—it is felt that he or she should be admitted to the EHPAD, even if it is against his or her will. In this case, however, the institution obtains the family’s consent. It is specified that, if there seems to be an emergency and the family has not anticipated it by placing the elderly person under guardianship, the institution admit the elderly person as soon as the family so wishes. According to this director, this is not a problem in practice because people then adapt to life in the EHPAD. Another director commented, “It’s the moment of admission that can be complicated.”
16 The same type of testimony from another director evoking the refusal expressed by people clearly suffering from dementia, but who are not under guardianship: “Legally, if they are opposed, we must not admit them. But often, the family applies pressure.” In this case, the interviewee felt that the reluctance of the person concerned should be disregarded when his or her stay at home constitutes a risk for themselves or their family and friends.
17 Management are fully aware of the legal difficulties. In some cases, the admission file contains a statement: “Is the person consenting or could consent have been obtained?” However, in the end, given the cognitive status of individuals, it is not possible to obtain informed consent. One director said, “We look for consent, of course, but it is not always obtained, of course not.” The search for consent appears more as an obligation of means than of result.
Consent and ethics of caring
18 Our survey of caregivers reveals a clear and widely shared interest in the question of care, of “caretaking”. This question is seen by carers as a constituent dimension of their central mission and thus of their professional identity. From this “care” perspective, consent is in principle conceived by carers as a prerequisite to any intervention with the elderly person. In case of refusal of care on the part of the elderly person, it is interesting to observe which practices are applied, in order to combine the respect the person’s wishes with the imperatives of hygiene, safety, and protection.
Arguments and principled positions: consent as a prerequisite for any intervention with the elderly person
19 The widely dominant argument of management, coordinating physicians and health supervisors, is that one should respect the wishes of the individual as a principle of care. Consent should not be due to constraint in the event of refusal (refusal to use the toilet, refusal of proposed meals or, sometimes, refusal to eat). In cases of refusal to take a shower, a doctor-coordinator said, “We avoid coercion and do the minimum necessary.” A solution involving the caregiver who has the best contact with the person is sought. On the refusal to take prescribed medication, a psychologist said that the person must be respected. “It is his right.” The family is simply informed.
20 This senior health manager in a public EHPAD presents a similar view. He indicates that the institution’s position is liberal, in the sense that the official instruction is not to coerce people. “The refusal of care is something that is part of our major concerns. We do not coerce. We ask that it be recorded in writing, discussed and then there is a course of action to be taken jointly and therefore we respect the refusal. That is essential.” If the refusal (for example, to eat) poses a medical problem, the psychologist intervenes to try to unblock the situation.
Negotiation and adaptation practices
21 Even if most of the people we met admit that consent is an essential prerequisite to care practices, a more detailed analysis of the interviews allows us to say that the consent of the person is more than a spontaneous act. It is rather the result of an arrangement, of “tinkering” and, ultimately, a form of negotiation between caregivers and residents. Geneviève Fraisse refers to this as “give and take” (Fraisse, 2007). Faced with a refusal, the practice will consist of returning later to offer care, changing staff, or seeking the resident’s satisfaction. [14] Part of the caregivers ’ activity is thus negotiated, despite the existence of formal procedures [15] with arguments mixing “consent” of the person, “good practices,” and “care ethics”.
“So I know that when she refuses, I let her calm down and I come back later and, generally, by negotiating, by speaking softly, I have never had too many difficulties.” (V., nursing assistant in private EHPAD.)
However, the sentiment of a number of caregivers interviewed corroborates Danièle Tacnet-Auzzino’s analysis that “this simple word of consent that we use on a daily basis is a very poorly designed covering for the elderly person in an institution” (Tacnet-Auzzino, 2009).“So it manifests itself one way or another […], they always manage to make themselves understood… and if they don’t want to eat, we don’t insist; anyway, we have no way to make someone eat with force… well, no “good practice” to make someone eat with force […]. Oh yes, there, it is the same, except for the intimate toilet, if she is not clean, there, there is still an obligation to do it, but as a result, we shorten it […]; afterwards, we negotiate, there are things we try. [16]”
The personalisation of assistance: the technical versus the relational dimension?
22 The very text of the law of 2 January 2002 speaks of the right to “individualised” care and support. Is it necessary to distinguish individualisation and personalisation? In practice, the two terms are synonymous and the support tools take various names: “personalised care plan”, “individualised support plan”, “individualised life project”, etc. It may nevertheless be interesting, from a theoretical point of view, to make a distinction between what is technical and managerial—the individualisation of a treatment hitherto conceived as collective within the framework of the institution—and what is of the realm of relations or “relationality” [17] in the sense of the personalist philosophy. For the carer it is certainly necessary to take into account the particularities, the singularities of the individual in the caring modalities being proposed. However, the ethics of caring also opens up consideration of the person in his humanity, his dignity, which supposes being able to offer a relation of quality which, in practice, will imply being able to take time.
23 In the language of carers, the EHPAD is quite widely presented as a residential centre in which the care and nurturing of the elderly gives way as much as possible to an individualised accompaniment in an agreed and shared project. In reality, however, the EHPAD clearly remains a place of care in which there has been difficulty in applying the question of personalisation to daily life. Tools of individualisation exist and are still being developed, but their application in practice has come up against various constraints.
Tools and techniques of individualised accompaniment
24 Under current legislation, EHPADs are required to draw up an individualised support project for each resident. However, while the legal provisions relating to the residency contract are quite precise, those relating to the reception and support project are hardly detailed. They do not specify whether it must be written or within what time limits it must be finalised. The institutions with whom we met are generally committed to this approach, even though many of them say they are behind “in their paperwork”, and affirm that they are concerned about the wishes and expressions of the will of each resident in daily practice.
25 Procedures for developing and implementing individualised life projects are relatively uniform. The basis for such procedures are exchanges between the multidisciplinary team, the person concerned, and the family. The aim is to arrive at a mutually accepted project. However, prior exchanges may be limited, depending on the person’s cognitive state and whether or not the family is involved in developing the assistance plan. When formalized, the history and life habits of the person entering an EHPAD, as well as medical information, are collected in a document. In addition, the objectives in terms of daily care and the services that will be provided (toilet, meals, travel…), according to the needs and aspirations of the person are specified. The personnel who will have to implement each objective are designated. The document appears as a synthesis between biographical, social, and cognitive data, punctuated by objectives, themselves translated into concrete actions.
26 The resident is called upon to witness his or her life history, that is, any element relating to his or her social and family trajectory. All useful information relating to sleep, diet, beliefs, or past leisure activities are collected. In many cases, however, where the resident no longer has the opportunity to express himself, the data collection is done with the families and is ultimately submitted to their assessment. Nevertheless, the interested party is consulted beforehand and the document drawn up is submitted to him for validation or amendment. However, field observations indicate that few institutions develop this document in real time and in consultation with the resident. Formalisation and updating of individualised life projects are problematic. These acts are described as time consuming.
27 In the end, it seems that the challenge of individualised life projects lies essentially in clarifying the modalities of care with families. In a way, the individualised life project is a tool for managing the relationship with families, even if professionals strongly support the idea that they try to adapt their daily practices to the resident’s wishes, individuality, or degree of autonomy.
The limits to the practical application of individualised life projects
28 On a daily basis, the case-by-case adjustment of the care of people in EHPADs is a complex task for carers. This is due to the increased degree of dependency of the public, and the organisation of work, time constraints, and a work rhythm that does not allow real personalisation. It is also noted that caregivers are not always culturally prepared for this form of social innovation. The results of our survey suggest that the individualised project is more a tool for continuity of service than a support contract reflecting the will and choices expressed by the person himself.
Work organisation and ethical conflict among caregivers
29 Everyday contingencies and organisational constraints do not always make it possible to meet the challenge of personalising care and support. This description of a typical workday is a testament to this:
“So, I work mornings or afternoons. Then, in the morning, we are at transmissions. Then, we prepare breakfast. We feed people who cannot eat alone. Then at 8 a.m., we start the toilets and the showers. We dress them. After 11:30 a.m., we take them to the dining room. … So, at 1:30 p.m., we help the morning colleagues fill the carts, prepare the protection, prepare the snacks. We have the transmissions after 2:30 p.m. Then we go to see the residents […], snack until 4:00 p.m. We wash the snack dishes and, then, we stay with them. We help the coordinator when there are activities. And after, we end work at 8:00 p.m.”
31 This description by carers of their activities suggests that it is organised according to the principle of division of tasks, certainly, and also according to a form of timing without this principle being formally established. Thus, time management is a major professional challenge, especially for caregivers: “we work in a just-in-time flow. Let’s just say that we don’t need a grain of sand that will stop the machine [18]”. In the end, far from being an instrument for meeting the expectations expressed by users, the individualised project appears to be the result of a compromise between the wishes expressed by the resident, the means available to the staff to try to meet them and the analysis that the carers make of the resident’s needs. There is therefore a significant gap between the way caregivers present and represent the document and how they use it. In principle, the person is listened to in his choices, in his habits. However, there is a kind of distortion, insofar as the staff of carers must combine this with the imperative of continuity of care and service at the collective level. Work must be completed “on time”, which leads to the development of priorities:
“If we admit that Ms. Angele [19] is autonomous and that it is only necessary to watch over her, then we will take Ms. Benedicte, involving a bit more work and then we will do a complete toilet in bed if Ms. Benedicte is autonomous enough to do up her face and her torso, so it is according to the person. [20]”
33 The values that motivate health care staff, particularly nursing assistants and hotel agents, who are in direct contact with the dependent elderly, their willingness to do well, and their commitment to serve are therefore undermined by organisational imperatives: rhythms of activity, workloads, absenteeism, and other uncertainties of daily life inherent in the functioning of any organisation. They confront situations with a double constraint on a recurrent basis: doing well with constant means and an increasingly dependent public. This kind of situation, this hiatus, creates real ethical conflicts and identity tensions in many carers, symptoms of a certain suffering at work. Caregivers often display a professional position of principle, according to which the relationship must ultimately prevail over care. They readily say that “caring” is a dimension of their professional identity that goes well beyond nursing. However, because of the work constraints mentioned, caregivers see their values shaken. They are led to consider that temporal imperatives affect the quality of their work, “time management taking precedence over the care provided” to take Mathieu Raybois’ turn of phrase (Raybois, 2014). In many situations, there is a conflict between the technical dimension (providing quality care) and the relational dimension of the function: spending time with the person, talking to them, reassuring them or taking care of them. The result is a degree of caregiver discomfort that can range from a feeling of sloppy work to deeper burnout. If we can speak of identity tension, it is because in these situations there is a form of dissociation from the “professional self”, where the profession and the real role do not necessarily harmonize (Lefranc, 2002).
The weight of healthcare culture
34 While the declarations collected from healthcare personnel highlight work constraints as an obstacle to the personalisation of support, the argument of managers and supervisors diverges from this. This category of staff the professional culture of carers to be the main issue. The director of an EHPAD attached to a hospital centre will even go so far as to say: “We hide behind organisational constraints, but it is above all the healthcare culture that is at stake.” It can be argued that individualised care requires staff training or at least awareness-raising on this point. In the case where staff are culturally accustomed to hospital-type health care, some reversal of perspective is necessary. “A good caregiver is someone who cleans perfectly from head to toe,” will say the health manager of a public EHPAD in a rural setting. The tendency at work would then be to project on the elderly person the sanitary conception of what is good for them, whereas it would be necessary to start from them. One director told us: “Today, our EHPADs are not caring for the person.” According to her, this is due to the importance of health culture and the way caregivers are trained:
35 “We are in the field of care, that is, caregivers are there to treat, to heal; we do not get them to think enough in schools about what an EHPAD is.” This speech corroborates the thesis developed in particular by Hélène Thomas (Thomas, 2005). However, it should not lead to underestimating the analysis that health-care staff themselves make of their work. Situations of ethical conflict, questions about professional identity attest to a certain degree of reflection among caregivers, not necessarily perceived or taken into account by the hierarchy.
Daily life and liberties within the institution
36 How are fundamental human rights and liberties experienced and realized on a daily basis within the EHPAD, which is certainly a residential centre, but which has an obligation to guarantee the individual and collective security of its residents? For managers in particular, this is a question of finding an equilibrium between these two requirements, which sometimes contradict each other. Institution policies and trade-offs can vary and remain areas of uncertainty. On the users’ side, however, the survey shows that the level of demand for respect and expression of their liberties is quite low. This also applies to their right to participate.
The individual liberties/security dilemma
37 The question of the individual liberties of residents sometimes gave rise to a rather general discussion, while other interviews approached the question from a more concrete angle: freedom to come and go, status of the resident’s room, right to smoke, alcohol consumption, sexuality, etc. Our interlocutors generally agree on the fact that individual liberties necessarily meet limits in the face of security requirements. Some comments express the idea that, to a certain degree, freedom and protection requirements (health, safety) are irreconcilable imperatives.
38 The freedom to come and go inside or outside the institution is formally recognised, but in practice, it is limited for highly dependent people (Thomas and Hazif-Thomas, 2014). A psychologist evoked the duty of protection incumbent upon the institution, but which presupposes that the risks for each resident have been evaluated, in order not to fall into an arbitrary security logic. In another institution, the psychologist discussed the period prior to the establishment of a protected unit within the EHPAD. She said that the institution, in agreement with the families, then assumed the risk of letting people walk around as they pleased. It can therefore be seen that the assessment of the dilemma between freedom and security varies between institutions and, perhaps, between periods.
39 In particular, the issue of the right to smoke in the room reveals the legal vagueness surrounding the issue. Some establishments prohibit smoking in rooms, either by making this prohibition explicit in internal rules or by installing smoke detectors in rooms. Others recognize in principle that this is indeed a freedom, but invite smokers to consume outside the building. This educational attitude seems to be the most widespread. One of the directors we met mentioned the case of a room fire in an EHPAD, caused by a cigarette butt and resulting in the death of the person concerned. When consulted on this question, the minister at the time, Roselyne Bachelot decided in favour of freedom to smoke. The interviewee understood the official position, but believed that the management of an EHPAD has police powers, including in the rooms, which are nevertheless a private space. Another director protested against the legal ambiguity in this matter, recalling that the regional health agency (ARS) demands that freedom to smoke in rooms be recognized while being firmly committed to safety requirements. His personal position is to give priority to security in his establishment at the risk of impeding individual freedom. Similarly, she encouraged people to smoke outside.
40 Another emblematic theme is that of sexuality in EHPAD. While this question is one of the most elementary rights and freedoms for couples already formed, some managers or carers express reservations when it concerns practices that may not have been freely consented to by the persons concerned themselves, in particular when the person has lost all or part of his cognitive faculties. A psychologist indicates that she is doing “follow-up work” on a somewhat dubious case: she regularly indirectly questions a resident of her institution who no longer has all her faculties and who is living in a relationship with a man whose sexuality is obviously quite unrestrained. She tries to make sure that this gentleman does not bother her and that the resident consents to these relations. The fact remains that the issue of the sexuality of elderly people in institutions often embarrasses caregivers and management. One principal confided that “it is ethically complicated”, particularly because of the family’s attitude, which in many cases does not allow their elderly parent to have a sentimental and sexual life in the institution.
The user at the centre of treatment. How is this understood by the people themselves and by their loved ones?
41 While admission to an EHPAD usually constitutes a biographical break (Mallon, 2007), the residents interviewed do not generally describe it as deprivation of liberty. As we have seen, there is a form of resignation and renunciation in the act of admission to an EHPAD. The users and families interviewed also have rather vague and distant memories of the approach to personalised support projects with which they have in theory been associated. Most interviews do not report restrictions on individual freedoms. However, certain freedoms are exercised conditionally or sometimes are exercised only with great difficulty. This is even more true when the person is dependent. More generally, one can consider that a part of individual rights is abrogated by the institution itself: choice of the rhythm of life, the type and rhythm of food, the neighbour at the table, consumption of alcohol and tobacco, etc.
42 As far as free circulation is concerned, we can say that this is exercised with restrictions. Some people are monitored and encouraged not to go out if the security risk is too great, in which case the need to protect the resident outweighs the exercise of freedoms. The trade-off between security and freedom made by carers is not, however, a source of problem for the families or residents encountered. Families are often looking for a safe place to stay in the face of their loved one’s dementia. On the other hand, some residents appear to have internalized certain barriers to autonomy as necessary for their protection, while others have even renounced the exercise of certain freedoms.
43 It is perhaps on the question of the right to intimacy that the strongest criticisms emerge. The residents denounce the sometimes unexpected intrusions of the nursing staff in their rooms. In addition, the fact that some facilities are still equipped with double occupancy rooms is perceived — including by staff — as not conducive to privacy.
44 In short, the residents we met generally do not demand greater freedom and are sometimes not even aware that they are limited in this sense. Yet freedom of movement can be largely under the control of health workers. The possibility of leading an ordinary life outside the institution is almost never real.
Participation and the question of “living together”
45 The field survey corroborates other results produced in the literature, namely that the elderly in institutions rarely take advantage of the collective spaces of participation that are available to them, such as the Social Life Councils [Conseils de la vie sociale](Prévot and Weber, 2010). We can say that they have a rather passive use. As early as the 1960s, American social gerontology in the United States made ageing a process of disengagement of the elderly from social life. [21] In short, admission to EHPAD, which for some refers to a biographical break, is subsequently transformed into an acceptable, even pleasant situation. Very few users express an increased demand for their rights. In reality, the dependent elderly people we met said they were more affected by the loss of autonomy and the physical and mental degradation of their peers than by any oppression of the institution. As Martine Dorange (Dorange, 2005) notes: “the institution is frightening because it reminds us of our condition as men and women who have reached the final stage of their life course and its risks.”
46 The basic problem posed is that of “living together”. More or less disabled people cohabit in the EHPAD. The mixed nature of those admitted is often included in the institution’s project. However, it is a painful experience for the resident to be confronted on a daily basis with very dependent people when one is not yet in this condition. The people we interviewed all mentioned the difficulty of living together. The increased dependence of some leads to fear and disgust in others and the expression of “separatist” sentiments, with some residents wanting the highly dependent public to be excluded. There is therefore a point of tension here, questioning what the EHPAD is and should be: a residence welcoming elderly people requiring support adapted to each individual case or an establishment specialised in the management of severe dependence? Some large establishments try to resolve this tension by organising accommodation in pavilions that accommodate people according to their degree of dependence and the level of care required.
Conclusion
47 The empirical work carried out aimed at measuring how and to what extent the legal injunction to respect the autonomy of the subject and his fundamental rights modifies the representations and practices of the care of the elderly in EHPAD. On the one hand, the institution has been transformed and, so to speak, humanized. The EHPAD is a place of collective living, which implies certain rules of organisation, but the individual is in principle respected in his fundamental freedoms and cared for taking into account his singularity. Dialogue and training programmes on well-treatment (la bientraitance) are spreading [22], and the old people’s hospice is a thing of the past. The individualisation of care is indeed a goal. However, it has taken a bureaucratic turn (the management of individual life plans) and has run up against a workload determined by the organisation of labour. On the other hand, through the effect of the growth of home-care policies, the EHPAD tends to welcome, often in emergency situations, a population that is more heavily dependent. This has implications for the real possibilities of obtaining the consent of the person and of ensuring the conditions of free choice. It also reinforces the health dimension of care. One could certainly imagine alternatives [23], but the trend towards medicalized treatment remains very strong, as evidenced by the public authorities’ concerns regarding the use of drugs in EHPAD (Verger, 2013). Practicing a true ethic of care based on respect for the autonomy of the individual is ultimately difficult. Training and raising the awareness of healthcare staff is a key issue, but the question of the means and organisation of work, often on a just-in-time basis, is also significant.
[Box] Methodology
1. Around sixty interviews were conducted with 11 EHPADs in Gironde, of different size, status, and configuration. The two main variables selected in making up our sample were the geographical origin of the establishment (urban, rural, or semi-rural) and the legal status (public, private, or associative).
- 2 institutions located in urban areas responded to our request: an associative establishment located in Bordeaux and an autonomous public structure located in the near suburbs;
- 5 rural establishments in a rural milieu also opened their doors to us. Among them, there were 3 public and 2 private for-profit institutions;
- Finally, the survey was carried out in 4 EHPADs meeting the characteristics of “semi-rurality”: 1 public establishment, 1 associative establishment, 2 private profit-making establishments.
- 9 structure managers;
- 14 supervisors;
- 21 caregivers, 4 non-caregivers (psychologists and coordinators);
- 15 residents and 2 families;
2. The body of interviews was supplemented by a few in situ observation sessions. We participated in a Café gourmand, a collective forum for free exchange and other conversations between the elderly, and a Conseil de la vie sociale that enabled us to understand the concrete ways in which users participate collectively in decisions that affect them. Finally, we were also invited to a collective animation around the preparation of a meal, which allowed us to grasp the functioning of alternative spaces to the care relationship itself and to perceive how users use these spaces of expression. We made secondary use of observational data: in many cases, they confirmed the content of some interviews more than they suggested new avenues for reflection.
Notes
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[1]
According to Hélène Thomas, “hospicialisation” refers to the earlier system combining assistance and total social control of indigent elderly people. Today it is often linked to hospitalisation, based on the idea that ageing is a pathology (Thomas, 2005). The culture of “hospicialisation” is still present in public long-term care establishments and, in a wider sense, in social care institutions (Thomas, 2007).
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[2]
Act No. 2002-2 of 2 January 2002 renewing social and medico-social action. Journal officiel de la République française (JORF) of 3 January 2002, p. 124.
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[3]
See article L. 311-3 of the Code de l’action sociale et des familles, which refers in particular to the right of respect of an individual’s dignity, integrity, privacy, intimacy and security; the right to free choice between the services offered; and the right to individual care and support.
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[4]
Act No. 2005-102 of 11 February 2005 on equal rights and opportunities, participation and citizenship for persons with disabilities. JORF No 36 of 12 February 2005, p. 2353.
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[5]
Act No. 2015-1776 of 28 December 2015 on the adaptation of society to ageing. JORF No 0301 of 29 December 2015, p. 24268.
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[6]
Order of 8 September 2003 concerning the Charter of Human Rights and Freedoms No. 234 of 9 October 2003, p. 17250.
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[7]
The law on the adaptation of society to ageing now prohibits the term “placing” [placement], which has been replaced by the term “reception” [accueil].
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[8]
This research has received the support of the French government, within the framework of the Investissements d’avenir, Initiative d’excellence programme de l’Université de Bordeaux, reference ANR-10-IDEX-03-02.
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[9]
National studies show an increase in the average level of dependency of residents (GIR weighted average (GMP) [Groupe Iso-Ressources moyen pondéré]) (see in particular KPMG, 2013).
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[10]
Survey by Observatoire régionale de santé—Direction régionale des affaires sanitaires et sociales (ORS-DRASS) Aquitaine 2006. See Agence nationale de l’évaluation et de la qualité des établissements et services sociaux et médico-sociaux (ANESM) 2011.
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[11]
Coordinator, former hospital health worker (ASH) [agent sanitaire hospitalier], public EHPAD.
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[12]
Care assistant, EHPA association in semi-rural area.
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[13]
The decision is formally taken by the director, on the advice of the coordinating physician. It is not uncommon for other qualified personnel, particularly the psychologist, to be involved in the process.
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[14]
This is all the more true in the alimentary field. One caregiver said, in an informal conversation, that she sometimes would give a person who refused to eat a latte and buttered toast as the only evening meal.
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[15]
The strategic analysis of organisations is a relevant framework for reporting on part of caregivers’ activity. See Crozier and Friedberg (1977).
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[16]
E., nursing assistant, suburban EHPAD association.
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[17]
On the concept of “relationality”, see Triest (2000).
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[18]
Excerpt from an interview with a caregiver in a public EHPAD in the rural sector.
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[19]
Both names are fictitious.
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[20]
Ms. B., caregiver, private for-profit, semi-rural sector.
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[21]
Cumming E. and Henry W.-E. (1961), Growing Old, cited in Mallon, 2007.
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[22]
Well-treatment is now part of the quality approach and is integrated into the legal evaluation procedures to which institutions are subject. Tools are available: see in particular ANESM (2008); Haute Autorité de la santé (HAS) and Fédération des organismes régionaux et territoriaux pour l’amélioration des pratiques et organisations en santé (FORAP) (2012).
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[23]
For example, the Alzheimer Village pilot experiment conducted in the city of Dax by the Landes departmental council, which consists of keeping Alzheimer patients in ordinary social life for as long as possible, without a visible white coat, in a non-drug approach, but under the close supervision of carers and volunteers.
