Management of Amyotrophic Lateral Sclerosis - Essay Example

Running Head: MANAGEMENT OF AMYOTROPHIC LATERAL SCLEROSIS Management of Amyotrophic lateral sclerosis Name Institution Date Introduction Reducing or diminishing patients’ suffering is considered the centre, the heart and essence of nurses’ clinical practice and indeed a major part of the entire health professionals’ practice. This implies that the ethical and obligatory aim of nursing should be focused on reducing, diminishing, alleviating or healing the emotional, physical and the spiritual suffering of patients as well as their family members (Wright, 2005). This is a case study on Bella who is aged 30 and experiencing serious illness caused by amyotrophic lateral sclerosis or motor neurone disease. Amyotrophic lateral sclerosis being a neurodegenerative disease affects both the upper and lower motor neurons in the voluntary motor pathway emerges to be fatal within the medium term because of its incurable nature. In addition, the disease manifests through progressive motor weakness that affects both the limbs and labial as well as gloss-pharyngeal muscles. Such deficits contribute to the loss of self-sufficiency and require early, continued and graduated multidisciplinary management in order for the patient to stay at his or her home and recognized in the community (Miller, 2009). Due to the severe and prolonged nature of amyotrophic lateral Sclerosis disease, new ways of planning care need must be achieved and implemented collectively. This should be coupled with special emphasis on the emerging needs of patients, family, carers and on a given interdisciplinary teamwork. The multidisciplinary management of the disease requires a coordinated, adjusted and flexible knowledge of the patient’s stage of shortfall by a professional team that includes physiotherapist, speech therapist, nurse, home help, social worker, psychologists and dietician as well as carers who may be family members or volunteers. Each of the team members should be tasked with the responsibility to assist the patient, in this case Bella to possibly cope with her handicap under the conditions of utmost comfort (Collins, 2007). The many losses that Bella has suffered from, this call for the emotional and spiritual support from the nursing care to reduce or alleviate the psychological torture she is undergoing because of amyotrophic lateral sclerosis. Bella also says that her legs, left hand and arm are all paralyzed with her right hand deteriorating, presents itself as a physical disability that calls for continuous spiritual care of the nurses. As a result, Bella’s paralyzed and deteriorating physical nature will not totally limit her from accessing the basics or her health needs since the nurses will be readily available to provide her with material support. Bella’s capability of speech is also gone and she depends on every person to handle almost everything for her. This suggests that Bella requires a holistic spiritual support from the clinical nurses and the entire healthcare professionals to encourage her to be strong and not lose hope in life. The collaborative healthcare support will enable Bella to consider herself as a normal person just like any other individual despite her paralyzed and deteriorating physical nature since she will receive distinctive care from different experts. She also feels to be nobody as reflected “What I have really lost is me,” adding that for everything that she loves is normally moved out of her reach. Although still in the presence of her life, Bella is unable to participate. Collaborative healthcare will be necessary for Bella since the various healthcare professionals will ensure that she is considered into different social groups such as disability supportive groups. Such groups will involve Bella into community development projects, and as a result she will feel loved and freely participate with others her family and the entire community in which she lives (Miller, 2009). Coordinated multidisciplinary care is considered the cornerstone of both management and evidence supporting approach for symptomatic treatment. Therefore, Hospital based, community rehabilitation teams as well as palliative care teams should work effectively in collaboration, shifting emphasis and altering their roles as the various needs of the individuals affected by Amyotrophic Lateral Sclerosis (ALS) evolve. This is because People affected by such a chronic disease appreciate and indeed demand a more coordinated team approach in order to take care of their needs as expected by MND Association Standards of Care (Skelton, 2005). Considering the severe and prolonged nature of the disease that Bella is suffering from, Kiernan, Vucic, Cheah, Turner, Eisen, Hardiman & Zoing (2011) recommend that arriving at a mutual decision for her medical condition is very essential for her being. This is because Amyotrophic Lateral Sclerosis is commonly perceived to be an ultimately fatal disease. Therefore, a joint decision made on the possible nutritional or respiratory support for Bella ought to be discussed by the entire parties prior to its need. As a result, Bella being the patient will be included in the decision-making process, within the climate of trust as well as in the medical, social and psychological situation that will be prepared for any consequences associated with permanent life support at Bella’s home. Enteral feeding should be considered for Bella since it prevents the effects caused by malnutrition, will prolong Bella’s survival as well as improves her comfort. This must be given through the percutaneous endoscopic gastrostomy tube. A comprehensive discussion on palliative care for Bella is needed based on her willingness to do so. On the other hand, though respiratory assistance does not completely stop the progression of the disease, (Radunovic, 2007), finds it recommendable for improved sleep, comfort and survival of the patient. Since Amyotrophic Lateral Sclerosis (ALS) is considerably a progressive disease, suggestive measures on Bella’s condition, her needs as well as those of individuals who will take care of her should be assessed on regular basis. By assessing Bella’s deficits and their impacts on what she can do, the course of her handicap as well as deterioration within the vital functions will also be anticipated. In order to achieve maximum efficacy in regard to Bella’s medical condition, there is an implication that the assessments made need to be coordinated through Amyotrophic Lateral Sclerosis (ALS) centres that can be able to provide a multidisciplinary discussion at one site. Based on my experience of clinical practice on the disease, Amyotrophic Lateral Sclerosis (ALS) requires multidisciplinary ways of dealing with the communication problems, feeding and nutrition, respiratory dysfunction and legal as well as ethical issues. The major role played by neurologist is to carry out and tell the results of their diagnosis, to effectively monitor symptoms as well as give pieces of advice on symptom control and to amicably discuss the immediate interventions to Amyotrophic Lateral Sclerosis (ALS) disease such as gastrostomy and ventilation (Skelton, 2005). It is very important that each of the team members is responsive to all the issues that affect each of the patients they encounter. As a result, regular team meetings coupled with team de-briefing sessions and clinics, are essential. There is need for correct overlap of roles and duties as well as good collaboration within the team and between the hospital and community based health providers. This implies that a multi-professional approach offers patients with Amyotrophic Lateral Sclerosis (ALS) disease the best hope of retaining quality of life within the face of both deteriorating strength and function. In this case neurologists are challenged with the task of securing the necessary resources from funding agencies in order to provide truly multi-professional teams together with other professionals purposely to develop some new concepts in patient centred care. In this regard, the recommendable management practices on the health condition of Bella who is suffering from Amyotrophic Lateral Sclerosis (ALS) should be the interest of both hospital and the community-based multidisciplinary team (Brown, 2003). Since Bella has difficulties with swallowing and increased dependency, it becomes critical that good symptomatic management of the respiratory failure and the associated nutritional problems should be the essence of the care provided by the multidisciplinary team. On the other hand, palliative care need to be introduced prior to the terminal stages, but after having a careful discussion with Bella and her carers. Most scholars of the disease argue that a number of patients with Amyotrophic Lateral Sclerosis (ALS) die from the pulmonary infections or some respiratory failure. Therefore, the provision of care to by a multidisciplinary team needs to be structured and coordinated so as to ensure that Bella and her carers receive the maximum level of care. Contrary to the common belief, death caused by chocking attacks is perceived to be rare with the final stages of the disease normally peaceful and dignified (Hughes, 2005). During the management process of patients with Amyotrophic Lateral Sclerosis (ALS) disease, a number of issues related to the management of such patients and the difficulties experienced by health professionals have been discovered as the additional key areas of focus. A case for Bella requires the health professionals to remain positive in the face of her progressive disability, problems that rise among the interdisciplinary team as well as difficulties associated with the patient care. This implies that the needs of caregivers attending to Bella’s health problems must be well addressed by the supporting health institutions. This suggests the need to provide the relevant personnel to support the primary caregiver with the various physical tasks associated with care giving, psychological as well as emotional support. This will enhance the various attempts that would be applied in order to optimize the relationship between Bella who is the patient suffering from Amyotrophic Lateral Sclerosis (ALS) disease and her caregivers. It should also be coupled with respite care provisions to eliminate caregiver burnout (Radunovic, 2007) Throughout my research on Amyotrophic Lateral Sclerosis (ALS) disease, I have examined that issues which are comparatively very difficult for the disease are the changes within patients’ affect, problems regarding planning care due to the disorders’ unpredictable course, patients’ tendency to be demanding, recognition and personality as well as diagnostic problems such as disclosing the diagnosis. My opinion is that health professionals who are expected to manage the health conditions of Bella need to have a holistic approach to such difficulties. Health professionals need to change their conceptualization of hope in relation to the management of Amyotrophic Lateral Sclerosis (ALS) disease. This is because Bella requires hope which can only be given by the nursing care or health professionals. In order for them to make a comprehensive understanding of the disease and the need to give Bella hope despite her health conditions, it is important for the health professionals to develop ways of enhancing communication among themselves and within different health care settings. I consider this to be essential for them to learn more from each other’s level of expertise, experiences as well as redressing gaps in their health care service provision, particularly for the young people like Bella with 30 years of age (Miller, 2009). Studies on patients with Amyotrophic Lateral Sclerosis (ALS) disease and their partners indicate that the major aim of communication between the two is to maintain social closeness. This is because lack of the ability to communicate effectively may result into devastating social and psychological consequences. Therefore, it is critical for Bella and her caregivers to consider other forms of communication that could be substituted for speech. In this regard, I recommend Bella’s speech problem should be attended to by speech language pathologist who will be able to offer her with the relevant strategies that can maximize her speech intelligibility. Suggestion has been made that acknowledging and supporting the patient spirituality can enhance their care. For instance, provision of pastoral care counselor in addition to the multidisciplinary Amyotrophic Lateral Sclerosis (ALS) clinic has been given a welcoming hand a number of patients. Since Bella is suffering from a life-threatening disease, my opinion is that a pastoral care counselor will be very supportive in strengthening her spirituality so as to view herself as an important person in the society rather that considering to have lost the really herself (Miller, 2009). Conclusion Multidisciplinary management of Amyotrophic Lateral Sclerosis (ALS) disease requires a coordinated, adjusted and flexible knowledge of the patient’s stage of shortfall by a professional team that includes physiotherapist, speech therapist, nurse, home help, social worker, psychologists and dietician as well as carers who may be family members or volunteers. Therefore, Hospital based, community rehabilitation teams as well as palliative care teams should work effectively in collaboration, shifting emphasis and altering their roles as the various needs of the individuals affected by Amyotrophic Lateral Sclerosis (ALS) evolve. The major role played by neurologist is to carry out and tell the results of their diagnosis, to effectively monitor symptoms as well as give pieces of advice on symptom control and to amicably discuss the immediate interventions to Amyotrophic Lateral Sclerosis (ALS) disease such as gastrostomy and ventilation. Palliative care need to be introduced prior to the terminal stages, but after having a careful discussion with Bella and her carers. Most scholars of the disease argue that a number of patients with Amyotrophic Lateral Sclerosis (ALS) die from the pulmonary infections or some respiratory failure. Development of various ways of enhancing communication among the health professionals and within different health care settings is important is the management of Amyotrophic Lateral Sclerosis (ALS) disease. This implies that the major aim of communication between the patient and caregiver is to maintain social closeness. References Brown, J.B., (2003). User, carer and professional experiences of care in motor neurone disease. Primary Health Care Research and Development. 4, 207-217. Collins, R.C., (2007). Neurology. Philadelphia. W.B Saunders Company. Hughes, R.A et al., (2005). Living with motor neurone disease: lives, experiences of services and suggestions for change. Health and Social Care in the Community.13 (1), 64–74. Miller, R.G.et al., (2009). Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management and cognitive/behavioral impairment (an evidence based review).Neurology. 73, 1227-1233. Radunovic, A.E, (2007). Clinical care of patients with amyotrophic lateral sclerosis. Lancet Neurology.6, 913-925. Skelton, J., (2005). Nursing role in the multidisciplinary management of motor neurone disease. British Journal of Nursing. 14(1), 20 – 24. Wright, L.M., (2005). Spirituality, Suffering and Illness: Ideas for Healing. FA Davis. Philadelphia. Kiernan, M., Vucic, S., Cheah, B., Turner, M., Eisen, A., Hardiman, O., & ... Zoing, M. (2011). Amyotrophic lateral sclerosis. Lancet, 377(9769), 942-955. Retrieved from EBSCOhost. Read More