Palliative Rehabilitation and Continuing Care

Introduction to Motor Neuron Disease

Motor neuron disease is a rare neurological condition which causes progressive damage to the various parts of the nervous system (Burrell 2016, pp. 919-931). The most common form of motor neuron disease observed in Australian population is Amyotrophic Lateral Sclerosis (ALS). It leads to muscle weakness and very often muscle wasting which can be very obvious to the naked eye (Burrell 2016, pp. 919-931). It is also brought about by the cessation of normal functioning of the various neurons and thus, causes severe neurodegeneration. Post manifestation, it tends to hamper the normal activities of daily living such as speaking, swallowing, breathing, walking and having an adequate grip on the objects. There is no established cure for this condition but with the specialist care and proper intervention techniques the quality of life of the person can be improved by multiple folds. The patient in the given scenario had been diagnosed with the condition at a very young age. It is important for early intervention in the given case scenario as the patient is currently having difficulty in swallowing. The Corbin and Strauss model helps in analyzing the trajectory of the condition that takes place as a part of clinical manifestation in the patient. It helps in examining the condition as it progresses and thus, helps in methodological planning of treatment intervention best suited for the patient. The case study of Adena will be evaluated with the help of this model of trajectory.

The Person

The patient in the given case study is a 35-year-old female who is married and have two kids. She is living near her family as well. She was diagnosed with Motor Neuron Disease one year back and her condition has been slowly progressing since then. Currently, the patient is able to manage her activities of daily living with little assistance from her mother and her husband. The patient is however, dully aware of her condition and knows that she might get complete loss of physical ability. She is also moving around with the help of wheelchair and is able to manage her transfers as well with minimal additional assistance. The patient might be experiencing the difficulty in swallowing and breathing as the condition will advance. Along with loss of mobility and functional capacity, there can also be a loss of speech. The issue of reduced breathing pattern is also of vital concern in the given case scenario.

This can also attribute to respiratory distress and respiratory failure as well. Marked declining in functional status can also lead to the patient having recurrent episodes of infections as well as cognitive difficulties. Along with her given neurological condition, patient also require mental healthcare. She is in acceptance of her current medical condition, however, feels deeply saddened by the fact as to how she will not be able to live long enough to enjoy with her family. The palliative care plan defined for the patient should thus, comprise of the holistic care approach for the patient, catering to all of her individual as well as medical needs. The social environment of the patient is also very supportive, which will be beneficial in ensuring smooth facilitation of the palliative care services for the patient. The role of family is also of vital importance to help the patient with the transition in her end of days of life.

Close Interpersonal Relationships

It is important for the nursing professionals to evaluate the relationship the individual might be having with them as well as their families and peer group. In order to ensure coordination of care, the trust of the patient should be won over. The patient should be able to openly express her concerns so that the same can be catered to effectively (Oliver 2016, pp. 65-68). The role of the family can be deemed as the front support system. As the condition progresses, the patient might also lose her self-confidence in managing her condition. The nurses can work along with the family in assisting the patient in managing her care and support. The family can also be helpful in providing the patient with an emotional as well mental stability to develop strength to manage her condition. These relationships are also crucial to promote a positive environment for the patient, thus, providing her comfort and solace in her end of days of life. The nurses can also work in close coordination with the patient’s close relations by teaching them with few techniques that can be helpful for the individual in managing her daily activities (Cipolletta 2017, pp. 5033-5043). This can be a helpful method in harm minimalization in the process of care management of the patient.

The Organization

MND Queensland is an organization that works in coordination with the government as well as non-profit organizations in helping the individuals and their families suffering with Motor Neuron Disease. MND Queensland helps in providing the required care and support to the individuals suffering from Motor Neuron Disease and their families as well (MND Queensland 2019). The organization mainly works to reduce the impact of the condition on the patients and their families and helping in smooth transition of care in their end of days of lives. This is also crucial for improving quality of life of an individual. They help the families by running an Information and Referral Advisory, that provides the individuals with the required information on the various healthcare care and supportive facilities available for them. These networks can be easily accessed through the home settings to get the required information on the same.

The nurses can work with the patient’s family in getting the important information on the support groups and services available to provide the help as per their needs. The services also provide the individuals with the advisors. The nurses can maintain a direct communication with these advisors in order to keep a close monitoring on the patient condition. Apart from the organization, the patient can also be helped with the help of multidisciplinary team approach. The role of physical therapist and occupational therapist is very crucial in managing the patient. The physical therapist can help the patient with maintaining her joint strength and range of motion. They can also help with the issue of respiration and swallowing, by working with the speech therapist. The patient can be taught exercises to manage the issue of dysphagia (Sandstedt 2018, pp.439-449).

The help of breathing exercises as well as incentive spirometry can be taught to the patient to help her in maintaining a healthy ventilation status and prolonging the chances of intubation. The nurses can work with the occupational therapists to evaluate the home environment of the patient and make the modifications in accordance with the sane. This is important from the point of view of ensuring mobility of the patient in her own comfortable environment (Foster 2019, pp.32-37). The patient can also be provided with the help of psychiatrist for keeping a close vigil on her mental health status. Mental health promotion is important as it is crucial to cope with the stress of managing the clinical condition. Promotion of mental health of both family members and patient is important.

Community Networks/ Community Support

The community support and care are also vital for the patient. The patient in the case study might feel like that she is the only one having this condition. Nurse professionals can help the patient by getting associated with the various support groups and patients who are suffering from the similar condition. This will be beneficial for the patient and the family as well in getting some re-assurance in managing her condition in more efficient manner. The patient might also get some insights on how to manage her condition better and will be able to provide her with the comfort. As there will be a limitation in the mobility of the patient, the same can also be provided support through face-to-face support and care. This will be helpful in keeping a constant touch with the patient. The interaction with the community and the individuals going through the same turmoil is helpful in supporting the patient both mentally as well as emotionally.

This will thus, be helpful in reducing her misery in her end of days of life. The family therapy is also crucial along with the patient. As the family of the patient will be bearing the burden of the condition, it is imperative that additional support and comfort is provided to them. The support group interventions can be helpful in dealing with these stressful conditions. Emotional support can also be provided to the family with the help of providing information regarding new concerns and stressors. The community support services will be helpful in providing specialist referrals for managing advance care in later stages of disease progression. Liaison officers can help in the process by bridging the gap between the patient and the healthcare providers (Cheng 2017, pp.320-331). This will be helpful in providing optimal care support to maintain quality of life in the end stages of life of the patient.

Equipment and Other Services

As the patient’s condition will progress, she will be more adherent to her bed. This will be due to loss of mobility with the progression of the condition. The patient will be requiring the additional care in such situation as she might develop infection or sores due to prolonged immobility. The nurses can teach the family and the patient about the use of various assistive devices that might be required by them in order to manage her condition. The MND Queensland, also help the patient with providing them with equipments that can be useful for them. These are mainly inclusive of air bed mattress, wheelchairs (power or manual), and recliners and so on (MND Queensland2019). The nurses can help the current functional capacity of the patient and her muscular condition in order to anticipate the best possible healthcare solution for her. For the purpose of dysphagia management professional referrals can be made in order to train the muscles prior to the onset of the disability. It is also crucial from the point of view of developing and maintaining strength of the musculature so that the end of life care can be smoothly transitioned (Canova 2017, pp.72-73).The patient can also be evaluated for her dietary pattern so that food alternatives can be evaluated for her to compensate for the supplement loss. The patient can also be trained for evaluating early signs of distress so that the same can be managed in a timely manner.

Conclusion on Palliative Care

People suffering from motor neuron disease might require additional assistance for managing their mental as well as physical health. As the condition progresses, the severity and the complexity of the condition also expands. In order to provide the patient with the required support keenly examining the individual is necessary, tagged along with their specific environmental considerations as well. identifying the early deteriorating clinical signs and symptoms is also of vital importance in this condition as will be able to help in setting early treatment goals for the patient. Nurses can play a crucial role in managing the care of these individuals. With the help of multidisciplinary team approach, the patient can be provided with continuity of care for managing their condition in the end stages of life. Nurse can also play a vital role in working in close coordination with the family of the patient to provide them with the ease, comfort and support, to be able to face the situation in a more methodical and tactful manner.

Reference for Palliative Care

Burrell, J.R., Halliday, G.M., Kril, J.J., Ittner, L.M., Götz, J., Kiernan, M.C. and Hodges, J.R. 2016. The frontotemporal dementia-motor neuron disease continuum. The Lancet388(10047), pp.919-931.

Canova, C., Krzyszkowska, M., Preema, R. and Mansell, S.K., 2017. Working across service boundaries: Facilitating timely access to respiratory management for people with motor neuron disease (MND). Physiotherapy103, pp.72-73.

Cheng, B.H.W., Chan, K.Y., Chung, Y.K.J., Choi, C.W., Chan, C.H., Cheng, S.C., Chan, W.H., Fung, K.S., Wong, K.Y., Chan, O.M.I. and Man, C.W. 2017. Supportive & palliative interventions in motor neuron disease: What we know from current literature. Ann Palliative Medicine7, pp.320-331.

Cipolletta, S., Gammino, G.R. and Palmieri, A. 2017. Illness trajectories in patients with amyotrophic lateral sclerosis: How illness progression is related to life narratives and interpersonal relationships. Journal of Clinical Nursing26(23-24), pp.5033-5043.

Foster, L.A. and Salajegheh, M.K. 2019. Motor neuron disease: Pathophysiology, diagnosis, and management. The American Journal of Medicine132(1), pp.32-37.

MND Queensland 2019 https://www.mndaq.org.au/Find-help/Regional-Advisor-Service.aspx

Oliver, D.J. 2016. Palliative care for patients with motor neurone disease: Current challenges. Degenerative Neurological and Neuromuscular Disease6, p.65-68.

Sandstedt, P., Littorin, S., Johansson, S., Gottberg, K., Ytterberg, C. and Kierkegaard, M. 2018. Disability and contextual factors in patients with amyotrophic lateral sclerosis-a three-year observational study. Journal of Neuromuscular Diseases5(4), pp.439-449.

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