CNS: Nursing Care of the Person with MS

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NURSING CARE OF THE PERSON WITH MS

By Marci Catanzaro

The nurse may come in contact with the person who has multiple sclerosis in a wide range of primary, acute, or long-term care settings. The chronic aspects of this demyelinating disease emphasize a need for care that cuts across these settings, and includes the maintenance of physical, psychological, and social health; evaluation and management of symptoms; and appropriate referrals. The physiological, social, and behavioral responses of the person to the illness are an integral part of nursing care.

The Congress for Nursing Practice of the American Nurses' Association has defined Standards of Nursing Practice(l). These standards guide the systematic practice of nursing and provide criteria for evaluating the quality of nursing care, regardless of the setting. Care of the person with multiple sclerosis is discussed here in terms of these standards.

Standard I: The collection of data about the health status of the individual is systematic and continuous. These data are recorded, retrievable, and communicated to appropriate persons.

Data are obtained through interviews, physical examination, clinical observations based on knowledge of the biological and behavioral sciences, review of records and reports, and consultations. Interview data from family members and significant others in the person's life are important in assessment, if the nursing care is to be appropriate to the situation in which the person lives. The priority of data collection is determined by the immediate health care problems of the individual. For example, the assessment of the acutely ill person will focus on those areas that are directly related to this illness. On the other hand, assessment of the person who is in a chronic phase will be more comprehensive.

Data about the person with multiple sclerosis include, but are not limited to:

1. The individual's and family's perceptions and expectations relating to health-illness states and health care services.

The current state of knowledge about MS indicates that the cause, treatment, and cure are unknown. Do the persons concerned comprehend these facts, and how is this comprehension reflected in their expectations for care? Does the person comprehend what medical science can do or cannot do to alleviate symptoms and cure the disease? Often problems arise if the person with MS and the significant others are not at the same level of understanding nor at the same stages of adaptation. For example, the person with MS may have accepted the illness and proceed to make necessary adjustments, while a family member is insisting that the diagnosis is incorrect and a cure is available.

Some questions that will assist in assessing perceptions about the nature of the disease and its managenient include the following:

What do you think may be causing these symptoms? What do you think can be done to help your disease?

2. The sequence or pattern of symptoms, therapy, and rehabilitation program, and the individual's perception of and reaction to these.

This area of assessment is related to the first area in that the person's expectations for treatment will affect how he or she perceives what is actually being done. The ability to cooperate with recommended management regimens will be determined, in part, by the congruence between ideas about the cause of symptoms and the proposed intervention.

It is also important to know what treatment or management regimens have been recommended. How effectively have we communicated with the person? Does the person understand how to carry out these suggestions? We often see people with MS who were told not to get overtired or to get adequate rest who have followed this advice by abandoning their usual occupational and social activities to spend their days sitting in a chair.

Some questions that may be helpful in assessing this area include the following: When did you first notice symptoms of a neurological disease? What were those symptoms? What did you think was happening? Did you tell anyone about these symptoms? What happened after that? What have you discovered that helps you?

3. Information about the occupational and educational history, health beliefs, recreations interests, cultural background, and spiritual beliefs of the individual and significant others as they relate to habits and social and work roles.

Who is this person? To what extent have the components of individuality been affected by MS? Data can be obtained through careful observation of behavior and conversation with the person and significant others, as well as from written records of previous contacts with the health system.

"Tell me about how you spend your day" will often trigger a lengthy description of the person's interests and underlying beliefs that make these things important. Further discussion can effectively take the form of genuine interest in the persons description. For example, "What kind of preparation did you need to get that job?" or "How do you feel about the time you have to do the things you want to do?"

4. The psychosocial behavior of the individual and family response to illness-their fears and their past and present patterns of coping.

Weisman defined coping as "what one does about a problem in order to bring about relief, reward, quiescence, and equilibrium"(2). In order to cope, the person must recognize that a problem exists from which some sort of relief, respite, and resolution is sought; then something must be done about the problem. Weisman suggested some questions that will assist the nurse to know more about how the person copes: "What problems, if any, do you see this illness creating? How do you plan to deal with them? When faced with a problem you must do something about, what happens? What do you do? How does it usually work out? To whom do you turn when you need help? What kinds of problems usually tend to get you down or upset?"(3)

5. Family dynamics, including communication styles and interaction patterns and role relationships.

How does the person define his or her family? Who are the members of this family, and what roles do they assume in it?

What is the effect on this person's illness on the family? How has the family constellation changed since the onset of MS? Marriage or divorce may have occurred, the presence of children in the family may have changed, the extended family may have become more or less involved. Have role relationships within the family changed since the onset of the disease?

The perception of what is communicated may vary between the sender and the recipient of the message. The person with MS may believe that a problem or belief has been successfully communicated when the significant others believe otherwise. For example, the invisible problem of fatigue may not be understood by family members, who continue to expect a mother to maintain her former level of activity at home and in school- or work-related activities.

At what stage of development are the children? What do they know and understand about the condition of a parent? How do the children respond? Do they bring friends home? What about their social interaction in school? Where do grown children fit into the family, and what roles and responsibilities do they assume?

Lesions in the central nervous system may affect all aspects of the human person. Damage may alter responsiveness, sensitivity, mood, humor, personality, and the ability to interact. When certain areas are affected, the way in which intimacy is expressed may also be affected. For example, a man with a lesion in the sacral spinal cord may be unable to obtain an erection; bladder dysfunction may result in urinary incontinence during coitus; or, adductor spasms in a woman may necessitate alternate positioning during intercourse.

Not every nurse possesses the necessary skills to assess the expression of sexuality, nor will all nurses be comfortable in assessing this area. These factors do not cancel the nurse's obligation to obtain this inforimation. In such cases, referral to another nurse, a social worker, a counselor, or other members of the health care team is appropriate. Accurate information in the area of family interaction patterns is difficult to obtain in an interview. Therefore, observation of verbal and nonverbal interaction among family members is essential. This can be accomplished during visiting hours in the hospital setting, in the waiting room of an outpatient facility, or in the person's home. Family members need to realize that their role in the care of the ill person is an important concern of the nurse.

6. What are the available and accessible human and material resources?

The person who lives in close proximity to a major metropolitan area clearlv has different resources available than someone who lives in a rural area. Also, the attitudes of the person toward asking for and receiving help from others are important points to consider when planning care. What does the person know to be available?

Friends are an important human resource. Some questions might be asked about friends: Have there been any changes in your relationships with friends? How often do you visit or phone each other? How close do you feel to them? Do you have much to talk about with them? Have you made any new friends since the diagnosis?

Local church, community, and fraternal groups are often capable of providing a wide variety of services needed by those with MS. Has the person had any contact with these resources? What is the person's perception of these groups?

The National Multiple Sclerosis Society has chapters throughout the country. These chapters may lend such equipment as ambtiiation aids, wheelchairs, and hospital beds, and may provide counseling for indiviidals and groups as well as social activities for people with MS and their family members. Neurological and rehabilitation clinics are sponsored by some of the Society's chapters, the availability of service's varying with each chapter. What does the local Multiple Sclerosis chapter provide that may be of service to this particular person?

The proliferation of health specialties and the complexities of the health care system have made an interdisciplinary approach to chronic illness both a reality and a necessity. A prerequisite for using such a complex system to the advantage of the person with MS is an understanding of how each specialty role articulates with others and who is responsible for each aspect of this person's care. Further, it is essential to know which parts of this complex system are accessible to the person in the local community. Physical, occupational, or speech therapy-urology, psyebology or any number of other special ties-may not be available where the person lives.

Lefton and Lefton identified hierarchies of authority and channels of communication as two organizational variables that determine how the team functions in the context of larger social organizations(4). Who is assuming the leadership in determining the involve ment and role of team members? Is everyone, including the recipient of care, clear about this leadership?

7. What is the level of comprehension and expression of the spoken word, written word, gesture, and visual image?

Since demyelination can occur in any part of the central nervous system, there is a potential for lesions that interfere with those abilities that allow a person to cornmtinicate. The ability to speak, hear, see, write, and to comprehend the spoken and written word can be compromised by MS. Optic signs of MS are not uncommon. Optic neuritis as an onset symptom occurs frequently. Nystagmus, bilateral internuclear ophthalmoplegia, and central scotoina are among the most frequently encountered visual problems. The nurse needs to know whether the person has experienced optic symptoms in the past. Are these present now? If so, how do these symptoms interfere with activities of daily living? How does the person cope? What are the person's expectations for the future in relation to vision?

Speech can also be affected by MS. Most commonly these difficulties are evidenced bv a slow, scanning speech pattern. Words may become slurred to the point where verbal communication is nearly impossible. Weakness of mtiseles involved in breathing and speech may make speaking a chore. Areas of assessment include the following: To what extent is speech impaired? How does the person manage cornmunication problems with family and with strangers? What other abilities does the person possess that may be used for commtinica tion? For example, can the person write or use a typewriter?

People with MS complain of deficits in short-term memory. Is this a problem, and is it recognized as such? What are some of the ways the person has found to compensate for this deficit?

8. The clinical assessment of physical function and status, including the ability to perform activities of daily living.

Multiple sclerosis is a very unstable disease. Not only does the clinical course vary over time, but the ability of the person to perform activities of daily living mav vary from moment to moment. The fatigue that is so often an integral part of MS may be the only thing that limits the person's functional ability. It should be noted if fatigue is a component and whether it interferes with activities. How does the person cope with fatigue now? Does the person understand adaptive behaviors that near, help to deal with fatigue?

Can the person bathe, dress, prepare and eat food, and carry out other activities of daily living independently in the setting in which or she actually lives? If not, what arrangements exist now? Are these arrangements satisfactory? Is more independence desired, and how might this be achieved?

What are the family's expectations for independence in daily activities? How does the person get about in the home and outside? Are mobility aides used appropriately? How does the person find using these mobility aides? Is transportation available for trips?

It is also important to ascertain other symptoms of neurological damage. Some of the motor disturbances that result from MS include intention tremor, muscle weakness, and spasticity. Sensory changes include numbness, paresthesia, pain, and decreased vibratory and position sense. Lesions affecting the autonomic nervous system may result in bladder and bowel disturbances and loss of libido. Mental changes, such as depression, euphoria, emotional lability, and simple deterioration, may also occur.

Are some of these symptoms more troublesome than others to this person? What is the person doing about those symptoms? If medication or other treatments have been prescribed, how are these followed? What effect do these interventions have on the person? Are symptoms of other disease present?

The nurse is not necessarily responsible for collecting all these data personally from the person with MS; in fact, other members of the health care team may more appropriately assess certain areas. For example, physical an occupational therapists are prepared to assess architectural accessibility of the home in relation to the person's current and future needs. All data, regardless of their iource, must be recorded, retrievable, and communicated to the appropriate person.

Standard II: Nursing diagnoses are derived from health status data.

A nursing diagnosis is a concise statement of judgments or coticlusions derived from the assessment phase and is based on identifiable data. Determined by continuous analvsis and interpretation of data about the strengths, limitations, methods of adapting to health deviations or potential deviations, as compared to the established norins, the nursinig diagnosis is consistent with current scientific knowledge and congruent with the individuals perception of the situation.

The National Conference on the Classification of Nursing Diagnosis lists possible diagnoses in the area of physical health, mastery competence, interpersonal and social competence, symbolic and purosive mastery, and self-actualization (5). This guide may be helpful to the nurse in suggesting ways to state a nursing diagnosis, based on assessment parameters. Some nursing diagnoses that may be relevant to the person with MS include sensory impairment, social isolation, altered self-concept, altered ability to perform self-care functions, or impairment of urinary elimination.

Standard III: The plan of nursing care includes goals derived from the nursing diagnoses.

A goal is the end state toward which nursing action is directed. Goals are derived from the nursing diagnosis and are stated in terms of observable outcomes. They are formulated by the individual, family, health personnel, and significant others. Goals are congruent with the individual's present and potential physical capabilities and behavioral patterns and are attainable through the use of available and appropriate human resources. All goals are achievable within an identifiable time frame and are assigned appropriate priorities.

An example of an appropriate goal may be this: The individual is able to achieve optimum independence with limitations imposed by a neurological deficit through psychosocial copying mechanisms and remaining physical abilities.

Standard IV: The plan of nursing care includes priorities and the prescribed nursing approaches or measures to achieve the gouls derived front the nursing diagnoses.

The plan for nursing care describes a systematic method to meet the goal, including priorities for appropriate action, alternative interventions for achieving goals, and a loeical sequence of actions to attain the goals. The plan is based on current scientific knowledge, is specific, and can be implemented. It includes appropriate health care professionals who function as an interdisciplinary team and incorporate available and appropriate material resources and environmental controls. The plan reflects dynamic changes in the individual and in the environment and reflects consideration of the "Patient's Bill of Rights"(6). The plan specifies what nursing actions are performed; how, when, and where these actions are to be performed; and who is to perform the activities.

There is no treatment known to medical science today that will alter the demyelination process. Successful management of the disease is based on the individual's ability to build general resistance, avoid excessive fatigue, avoid extremes of hot and cold, prevent exposure to infection, and undertake early and vigorous treatment when infection does occur; balance rest and exercise within his or her capacity, and eat a nutritious and well-balanced diet(7). Price and Wood further discuss ways of achieving these goals(8).

Drug therapy may play an important role in the management of symptoms of MS. The person with MS who is taking medication is expected to be able to name the drug(s) and the dosage prescribed; recognize the expected positive and negative effects of the drug(s) used; differentiate side effects requiring symptom management, for example, dry mouth from anticholinergic drugs, and those requiring notification of the care provider (urinary retention from anticholinergic drug(s) safely self-administer the drug(s) and avoid prescription and nonprescription drugs that may interact with others being taken.

Persons experiencing an acute exacerbation of symptooms may recieve ACTH or corticosteroids to reduce edema and the acute inflamatory response at the site of demyelination. The symptoms resulting from acute inflammation are expected to subside. Side effectsof the drugs may include edema, euphoria, or depression. Marked edema or shortness of breath requires prompt notificaiton of the care provider. These drugs may interact with salicylates, phenylbutazone, antihistamines, diphenylhydantoin, and hypoglycemic agents, including insulin.

Elimination problems are not uncommon in MS. Uriniary retention, frequency, or incontinence are frequently encountered. Major goals of management include the prevention of urinary tract infection and subsequent real damage and maintaining social acceptance. The location of the lesion in the cnetral nervous system will determine the management regimen. An uninhibited (spastic) bladder can be successfully managed with an anticholinergic drug. Cholinergic drugs may be a part of the amangement of an areflexic (flaccid) bladder.

The nurse may also need to demonstrate and teach the person to perform other interventions to facilitate the complete emptying of the bladder. These may include Crede manuevers, stimullating reflex contraction of the bladder by stroking the abdomen or stretching the rectum, intermitten catherization, or application of an external catheter for males.

The effect of muscle weakness and incoordination can be decreased by encouraging activity with the limitation sof the individual. While muscles that lack innervaiton cannot be restored by exercise, active and passive range of motin exercses to all extremities wil prevent contratures and assit in maintaining tone in unaffected muscles. The National Multiple Sclerosis Society published two exercise manuals that are available through local chapters-one for ambulatory and ambulatory-assisted persons, and another for nonambulatory persons.

Bracing and other assistive devices are often needed to overcome muscle weakness. Referral to specialists in physical medicine and rehabilitation should be made early in the course of the disease. When improper techniques have been learned or deformity has occured, it is far more difficult to restore functional ability.

Intention tremor may be the most disabling symptom the person experiences. This tremor is notoriously resistant to pharmacological management. In carefully selected cases, cryothalamectomy has been effective in relieving tremor(9). Some patients are able to use bio-feedback techniques to control some of their intention tremor.

It is important for the person with intention tremor to maintain as much self-care activity as possible, but to avoid frsutration and a sense of failure. The use of assistive devices may be helpful. An electric toothbrush is an example of a device that decreases the number of movements rquired to complete an activity. Stabilizing an extremity against a solid surface may control some tremor. For example, placing an elbow firmly on the table top may control enough temor in the proximal exterity to allow the person to eat independently.

Spasticity may interfere with many activities of daily living. Drugs used for the management of these problems may include Valium, dantroline sodium (Dantrium), or Lioresal. Each has advantages and disadvantages that need to be weighed carefuly in each case.

Sensory changes in skin can be annoying as well as disabling to the person with MS. When sensation is lost, the person must learn self-protection techniques to avoid skin trauma. Text books on the care of the spinal cord-injured person can help to provide many suggestions for dealing with loss of sensation.

Standard V: Nursing actions provide for client/patient participation in helath promotion, maintennce, and restoration.

The care plan is developed with and communicated to the individuaal, family, significant others, and health personnel as appropriate. These people are kept informed about the health status of the person with MS, about the nursing care plan and how it articulates with the total health care plan, and about the roles of health personnel in implementing the plan of care. The person and family are provided with information necessary to make decisions about promoting, maintaing,and restoring health, and employing appropriate resources to achieve these goals.

The problems encountered by people with a chronic disease do not differ markedly from those confronted by people with acute diseases, except that the problems of MS often persist and are relatively more permanent than the problems encountered by someone with an acute illness. This chronicity expands the person's responsibility for self-care and the involvement of family, frineds, acquaintances, and even strangers. Much of the person's time is spent at home, away from health professionals. The client's role in symptom management then becomes central, and success or failure depends heavily upon his or her judgement and ingenuity as he or she continuously readjust lifestyles in order to accommodate changing status(10).

Standard VI: Nursing actions assist the client/patient to maximize his health capabilities.

Nursing actions designed to achieve the goals set for the person with MS do not differ from those practiced in the caring for others. Documentation of these nursing actions is of prime importance, given the long-term nature of MS and the fact that numerous other health care providers will be involved.

Standard VII: The client's/patient's progress or lack of progress toward goal achievement is determined by client/patient and the nurse.

The role for the person with MS is central to the ongoing effort to achieve goals. The mutual exchange of information about progress toward goal achievement is critical to the nursing process.

Standard VIII: The client's/patient's progress or lack of progress toward goal achievement directs reassessment, reordering priorities, new goal setting and revision of the plan of nursing care.

Multiple sclerosis is a nonstable neurological disease, which may go into remission, exacerbate, or steadily progress over brief or extended periods of time. The individual, family, significant others, and health care personnel must be actively involved in continual reassessment. Otherwise the plan of care may become outmoded. For example, a cane may serve to assist walking for the person with weakness in one leg, but increasing ataxia may make it impossible for ther person to continue safely to place the cane.

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