Approaching Clients With Multiple Sclerosis in Social Services

The paper aims to reflect on multiple sclerosis, its social impact in the lives of patients, and ways of approaching such clients in social services. The author describes ethically problematic forms of approaching such clients occurring in social services. He then points out certain aspects that sustain a holistic perception of persons with multiple sclerosis, help appraise the complexity of their needs and rights, and can thus help improve the quality of practice.


Social aspects in MS patients
In view of our aim it is important to describe not only the characteristics of the disease but also the social aspects of the patients, since it will help us clarify the needs of clients with multiple sclerosis in social services and adequate approach to them. Persons with such health disability and related symptoms are socially stigmatized, 10 they suffer from social exclusion. They become more sensitive, and thereby more vulnerable. Due to the dynamics of psychosocial changes MS patients need not only pharmacological treatment but also psychotherapeutic support early on. 11 Based on questionnaire survey results, M. Vachová concludes that the quality of such patients' personal as well as professional life decreases. 12 Adequate approach should thus be assumed in caring for them.
As a result of the disease, attitude and role changes occur both in the patient and his nearest. All interested parties must gradually learn to cope with the change and adapt to the new situation. 13 As with every grave disease without the prospect of cure, persons with multiple sclerosis go through crisis stages as described by E. Kübler-Ross (denial, anger, bargaining, depression, acceptance). 14 Due to the decrease in mobility and self-sufficiency they often lose their jobs and favorite leisure activities, whereby they enter social isolation. In this social "drop" patients lose some "friends", while other relationships are strengthened and real new friendships arise. Due to loss of customary social ties, insecurity with respect to the future and fear of progression patients without necessary psychosocial support can become desperate and acquire behavioral disorders. 15 Unfortunately, the gravest consequence of chronic disease is deterioration of partner relationships, which is much more common as compared to healthy population. 16 For cases when marriage is successfully maintained J. Křivohlavý states with reference to various studies that although the mutual relationship of the spouses improved in a number of cases (with respect to social distance), the measure of satisfaction in marriage did not increase -rather the contrary. 17 In the intimate life of partners there occurs impaired perception of one's own sexual attractiveness due to mobility, sensitivity and sexual functions disorders. 18

Ethically problematic forms of approaching MS patients in social services
In order to grasp the issue properly I will first clarify the concept of "approach" in the context of this paper. I use the term to signify the attitude of caregivers in caring for and communicating with MS patients; the context relevant to this paper are social services.
The quality of approaching clients with MS is determined by the momentary psychosocial condition of the patients (e.g. in connection with psychological changes occurring while learning to cope with the disease as described by E. Kübler-Ross -see above) as well as by the momentary disposition of the caregivers. Despite the expected professional approach, mental and physical fatigue of the caregivers also plays a part in caring for such demanding clients. 19 Another factor that may affect the quality of the caregivers' approach to their clients is their conviction that they are insufficiently paid for their work. 20 The facts we have outlined in the preceding chapters on their own suggest the need to approach these people in a specific manner, especially in the "impersonal" environment of social services. The literature on the topic and my own questioning of clients has shown that in practice the requirements of a specific approach are not always met, and one may even encounter problematic approaches. Of the wrong attitudes of caregivers in social services mentioned in the literature 21 and on the MPSV ČR web site 22 I deal only with those problematic attitudes personally encountered by multiple sclerosis clients.
The list of ethically problematic approaches below summarizes the results of my records of the experience of clients with MS in social services in various parts of the Czech Republic in 2011-2013. 23 The most commonly occurring problematic approach by professional caregiv-ers has turned out to be so-called "infantilizing" (using diminutives when addressing clients: e.g. "Johnny", "Lizzy"; when doing hygiene: "handie", "footie"; or when serving food). In addressing and providing care diminutive expressions inadequate to the dignity of an adult human being are used, which some clients perceive as humiliating. The caregivers adopt an overtly maternal attitude to the patients and sometimes provide more care than necessary, which suppresses the patients' own, though minimal autonomy. It is probably due to a certain "excessive" compassion of the caregiver with the MS patient, as well as greater focus on the physical immobility, to the detriment of perceiving the client as an adult with a preserved intellect. Although the patients are often happy if the caregivers accept familiar first-name terms, this is more likely to result in being treated as children. My survey has shown that those who remain on distant, family-name terms with the caregivers do not encounter this problematic approach.
Another problematic approach is "disabling", i.e., when caregivers deal with clients as not equal dialogue partners, as if they were inferior or not sui iuris, or the caregivers consider themselves to be so expert in the providing that they refuse to listen to the clients or agree on an optimal procedure with them. Unfortunately, some caregivers interpret the immobility of MS patients as incapacity to decide for themselves, which is a great mistake. Despite their dependence and impaired communication the intellect of MS patients is not normally affected. In the social services the opposite problem also occurs, when clients (mostly women) ask to be served by the caregivers although they are capable of the relevant actions themselves. In such cases it is proper for the caregivers to act assertively and not let themselves be manipulated to the detriment of supporting the clients' autonomy.
"Refusing attention" occurs especially in cases when the client suddenly needs to go to the toilet and asks the caregiver for help, but she does not assess that as urgent and continues in a different activity. Caregivers also sometimes pay insufficient attention when adjusting the clients' bed, when they sometimes do not ask if this or that position suits the patient. Due to fatigue caregivers sometimes inappropriately tell clients that they are tired, their back aches or that their shift will soon be over. On the other hand, some clients demand overt attention in not very grave matters. The caregivers then employ refusing attention as a preventive measure to protect themselves from manipulation. Sometimes clients are upset that the caregivers have so many things to do that they cannot immediately satisfy their wishes, e.g. help them change position, put them in bed, etc. In case of a more serious need, such as setting on a toilet, the caregivers grant it, but sometimes make unsuitable comments (e.g., "now she has remembered"). Some caregivers refuse to communicate with clients while providing care.
MS patients do not take well when caregivers are in a hurry, which results in "not respecting speed". Such caused stress may cause problems in communication, especially with clients who find it more difficult to express themselves or are hard of hearing.
The problem of "labelling" occurs when caregivers signify a client according to her behavior or disability with a term which is then used to refer to her (e.g. "stretcher"), or refer to the patient by her diagnosis, or in case of different ethnic background use an abusive name. In such situations so-called "stigmatization" of clients occurs in the prejudiced behavior of the caregivers, which is due to their aversion for or dislike of the patient who smells due to excessive perspiration or incontinency.
When dealing with the family in the client's presence there is the risk of "ignoring" the patient, e.g. by speaking about her without her, especially when the client cannot articulately, and therefore intelligibly, speak of her condition. Another kind of ignoring may occur when the caregivers refuse to regularly check the ward to see if everybody is fine. In case of an accident the clients would be unable to help themselves in the absence of another person. A certain kind of ignoring on the part of the caregiver are situations when clients are involuntarily "flooded" with monologues narrating the personal life of the caregiver. Mentions of social activities (shopping, housework, entertainment, dancing, etc.) can make the immobile clients especially sorrowful. Another kind of ignoring the patient may be lack of interest in her satisfaction with how the position of the bed has been positioned or with another act of care. When doing hygiene in the client's room there is a risk of a certain kind of ignoring the patient's privacy. It is therefore ethically more acceptable to prepare suitable environment before the act itself -i.e., by excluding the presence of other persons and closing the door.
In exceptional cases some clients may provoke certain concealed or patent mockery on the part of the caregivers. This may happen with MS patients whose articulation is impaired or who distinctively attract the caregivers' attention. Not all clients can take the peculiar reactions of the caregivers well. However, the surveyed multiple sclerosis patients agreed that compared to hospital stays they have experienced ethically problematic approach in social services rather exceptionally.

Approaching MS patients in a way that appraises the dignity of the patient in her entirety
Having introduced the disease, its social impact, as well as the ethically problematic forms of approaching such clients in social services established by research, there now arises space to ask what the practice ought to be like, what requirements there are for approaching such specific clients in social services and what ideas might be inspiring. It is definitely important to perceive the ill person in her entirety, as a bio-psycho-socio-spiritual being. 24 Having outlined the physical and social issues, in what follows we will therefore also touch on the psychological and theological dimension of a human being with multiple sclerosis. In this way the patient can be appraised more objectively in her needs as well as her transcendent value.
Even in disease, a human being is first of all a person, who despite her disability does not lose her natural dignity, deserves respect, protection, and sympathy. Multiple sclerosis patients struggle with vulnerability, 25 awareness of the threat posed to their existence, helplessness, dependence on others and the related shame, with incurable disease and physical disability. Their vulnerability consists not only in loss of health and self-sufficiency, but also in violation of identity (of the idea "who I am"), in loss of self-respect and value. 26 It is therefore imperative in the "impersonal" environment of social services to approach the clients in a way that fortifies their worth not only as human persons and individualities, but also as dialogical be- The second most important value has naturally turned out to be own health (keep one's health, re-gain health, be active, self-sufficient, not suffer pain etc.), the third value the respondents state are their predilections (my cat), basic needs (eat and sleep well; peace and well-being) or spiritual matters (the belief that everything has a meaning; faith). 32 As dialogical and social beings persons with multiple sclerosis naturally need to relate to others, live for other and love someone. 33 But in their vulnerability they also need to experience love, attention and deeply human understanding and to be accepted by others as they are, otherwise they suffer. A psychologically adequate attitude to a patient appraising her natural dignity fortifies mutual trust, friendship, belonging, and brings a certain sense of satisfaction and security to both parties in the communication. The caregivers ought to not only reflect the patients' loss of self-sufficiency, health and social ties, but also accept them as equal partners in dialogue, protect them from doubts concerning their worth and raise them to a maximally full-valued and as far as possible autonomous life with the disease. When accompanying the patient, however difficult it may be, her disease may be reflected positively as a challenge or chance to live one's life in a more worthwhile way. 34 In the issue of proper attitude values towards MS patients one can utilize the conception of basic anthropological needs, as laid out in the generally known hierarchy of human needs by the American psychologist A. H. Maslow. 35 According to him, the most basic are physiological needs, then comes the need of security, further the need of love and belonging, then the need of appreciation and respect, and finally the need of self-realization. An outstanding proponent of an approach appreciating the dignity of human beings was the American psychologist and psychotherapist C. R. Rogers, who in his "person-centered approach" considered the following attitude values to be very important in communication with clients: acceptance (unconditional acceptance of the other), empathy (putting oneself in the place of the other) and authenticity (sincerity to the other). 36 The psychologist K. Kopřiva in his book Human Relationship As Part of Profession (2006) presents the results of a questionnaire survey for nurses and social workers in homes for the elderly (some multiple sclerosis patients are already elderly -author's note). It deals with the expected preferred capabilities of nurses and attendants if some of their near ones came to stay in a home for the elderly. The survey results have shown that the assisting professionals themselves would first of all expect affection (kindness, willingness, love, and others), then patience (also tranquility, composure, and others), empathy (also appreciation, sympathy, and others), and only in the fourth place expertise (also professionalism, knowledge, and others). On this the author notes that the atmosphere created by the assisting professional in interacting with the client can support the client, but it can also discourage her. "The client needs to trust (the assisting professional), feel secure and accepted. Without this relational framework the assisting professional's work is nothing but exercising entrusted power." 37 In my research in social services I learned that MS clients most value the caregivers' sincerity, then trust, kindness, ability to understand the other (empathy), ability to respect, esteem others, be interested in the other and her needs, they also positively value willingness to help, ability to apologize, want good for the other, forgive, be grateful. 38 In order to understand the reasons of the human being's personal dignity, which is not determined by her health condition, it is necessary to elucidate the theological dimension of being human. In the Judeo-Christian tradition the value of the human person derives from theology of creation, which gives human beings high standing in God's plan of creation. In the order of creation the human being is elected to be an image of God, to have a spiritual immortal soul and to be called to eternal life in communion with God. 39 As divine image human beings have a natural desire for God imprinted in their hearts -i.e., a desire for fulfilled and happy life, for freedom, truth, beauty, the good, and love. 40 Only in relationship with God does human life have meaning, its divine worth and fulfillment. 41 That is why every human person ultimately deserves to be treated in a way worthy of God. 42 If a human being undergoes suffering, pain, or disease, she loses none of her dignity, although she suffers from a certain evil. 43 As divine image human beings are called to become ever more like their Creator. 44 They can only fully achieve that in the power of God's Spirit by showing selfless love to others. 45 The greatest exemplar of such acting is the incarnate Son of God in Jesus Christ (Jn 15:12), who is the true image of God (2 Cor 4:4; Col 1:15; Heb 1:3). By becoming like the Son of God human beings participate in divine Sonship. From the Christian point of view the adequate approach to MS patients is therefore based on the ethos of Jesus of Nazareth. Thus motivated approach raises the patient to the true dignity of a son of God. 46 As mentioned above, from the theological point of view the human being fulfills her mission on earth by manifesting love for others according to the example of Christ. In him divine love, caritas, which freely loves others regardless of their bodily or spiritual attractiveness, was revealed to humanity. 47 God's caritas is a love which bows down to all those in need. 48 We can find an illustrative biblical example of such love in Christ's likeness of the merciful Samaritan (Lk 10:25-37). The story can inspire caregivers in social services to so-called samaritan attitude, 49 i.e., having a heart sensitive to the suffering of others, approaching those in need and helping them as possible. 50 True human greatness is thus revealed in the quality of relationship to those who suffer and their needs. 51 When the suffering of a human being in need is shared, the sufferer is permeated by the light of love. She is no longer alone and by the comfort extended to her experiences the community of con-solatio in her solitude. 52 The caregiver is thereby likened to God's Son who liberates humans from solitude. 53 Responsible care of the ill in the Christian tradition relies to a great extent on Christ's parable of the last judgment in the Gospel of Mathew (Mt 25:31-46). Proper personal attitude to all in need, with whom Christ identifies, is shown as an important criterion of salvation. Jesus himself tells his disciples to imitate his love (Jn 15:12) and promises the merciful that they will receive mercy (Mt 5:7).
The theological positions described above comprise concrete aspects that may be taken into account and applied in approaching MS patients in social services. There are also other moments that may not be left aside.
As any long-term disease, multiple sclerosis may lead the patients to close in on themselves, to doubt their inner security, and thereby to raise existential and spiritual questions. 54 As a result of their disease, people suffering from MS sometimes undergo a deep revision of their relationship to God or otherwise perceived absolute being. Those who believe in a personal God frequently feel that the Almighty is punishing them and that they have not deserved such punishment. That is why some conclude in their despair that they are being punished for sins committed in previous lives and turn from faith in God to belief in fate, which vicariously helps them to accept their incomprehensible lot and cope with the disease. 55 But when patients accept their suffering as a vocation and spiritually unite themselves to the cross of Christ, they can live it as participation in the salutary work of God (1 Pt 4:13; Col 1:24). 56 The reality of the disease can therefore be perceived in a positive sense as God's grace, as a chance to live one's life in a more worthwhile way. 57 When the incurably ill revise their inner self in depth, their heart is converted. 58 They then appreciate an attitude of their surroundings which liberates them from threatening feelings: loss of worth and dignity, despair, solitude, insecurity, or fear of death. In the social services environment such clients are grateful for every expression of real friendship, acceptance, listening and mutuality, since such receiving community helps them to experience a sense of home and security. 59 A social service establishment applying divine caritas in the approach to clients can theologically be viewed as a place of meeting God, a place where patients can feel at "Home". By approaching MS patients in a way that appreciates the spiritual dimension of a human being, the caregivers can to a certain extent spiritually accompany their clients.
To summarize we can state that an approach appraising the dignity of MS patients, as well as ultimately the dignity of God, in the assisting professions is manifested by the following: respect for the other, trust, sincerity, the samaritan attitude (interest in the patient and her needs, including providing care), wishing good for the other (benevolence), having understanding for her (empathy), being kind, being able to apologize, to forgive, to be grateful. 60 The adequate attitude to MS patients aims (as far as possible) to promote their dignity, inner integrity, social integration, own identity, autonomy, satisfaction, responsibility for themselves, as well as development (ripening) of personality.

Conclusion
Social services clients with multiple sclerosis are confronted with awareness of the incurability of the chronic form of the disease, with human vulnerability, helplessness and dependence on others, as well as ever graver disability. Awareness of the threat posed to their existence brings insecurity and worry. Apart from early treatment and rehabilitation they need to experience proper psychosocial support from their nearest as well as professional caregivers. With reference to the holistic view of the human being as well as findings from social services clients with multiple sclerosis themselves we can state that caregivers' approach appraising the dignity of a human being with multiple sclerosis in social services is one that respects clients as equal partners, does not disable them, is not like approaching children, respects their speed, and is perceptive to their needs. If caregivers approach clients in a way that appraises human dignity, they boost the patients' motivation to live their life with the disease in a fuller way, and thus take care of the quality of their life in a more autonomous way.