Case Study
This is a story of the suffering of Bella, aged 30, who is experiencing the serious illness, amyotrophic lateral sclerosis (motor neurone disease). She has been married to a very supportive husband for seven years and was expecting to start a family when the diagnosis was made.
I have suffered so many losses. In the 6 months since my diagnosis, my legs and left hand and arm are paralysed and my right hand is deteriorating. My capability of speech is gone and I am having trouble swallowing. I depend on everyone to do almost everything for me. But this is just the summary of the physical list. What I have really lost is me! It is like everything I love is being moved out of my reach. Yet, I am still here in the presence of my life, but unable to participate. [Adapted from Wright, 2005, p. 40]1.
Please read and reflect upon the above case study and then read and reflect upon the excerpt below –
“I submit that reducing or diminishing suffering is the centre, the essence, and the heart of nurses’ clinical practice and indeed a major part of all health professionals’ practice. Therefore the ethical and obligatory goal of nursing must be to reduce, diminish, or alleviate (and, we hope, heal) emotional, physical, and/or spiritual suffering of patients and their family members” (Wright, 2005, p. 36).1
Discuss briefly your response to the above excerpt. Demonstrate your understanding of the excerpt by discussing how a health care professional could best care for and help diminish Bella’s suffering. Please use content from this unit as well as academic literature when writing this essay, and include relevant reflections from your own personal and/or professional experiences.
In order to lead a ‘full life’ we need to have a reason for living. We need to have a goals and a sense of purpose, which may include work, family and friends. Health is defined as freedom of disease or any abnormalities, a condition of physical, mental, and social well-being. Illness is an impaired function of a person including physical, social, emotional, intellectual aspects. Mosby (2002).
In this assignment I will define Amyotrophic Lateral Sclerosis and how illness and suffering affected Bella’s life by depriving her from performing the basic needs of any human being; such as physical, social emotional, intellectual and spiritual. The role and importance of health care in recovery and reflect from my own experiences.
“Amyotrophic lateral Sclerosis (ALS) is a degenerative disease of the motor neurons in the spinal cord, brainstem and cerebral cortex, characterized by weakness and atrophy of the muscles of the hands, forearms, and legs, spreading to involve most of the body and face. It results from degeneration of the motor neurons of the anterior horns and corticospinal tracts, beginning in middle age and progressing rapidly, causing death within 2 to 5 years. There is no known treatment or cure. The disorder is characterized by rapidly progressive weakness, muscle atrophy and fasciculation’s, spasticity, dysarthria, dysphagia, and respiratory compromise sensor. (Ferguson & Elman, 2007).
Around 15-45% of patients experience “emotional liability”, this consists of uncontrollable laughter, crying or smiling. Patients will experience impairment of swallowing and chewing, which increases the patient's inability to eat normally and the risk of choking or aspirating food/liquids into the lungs. Weight maintenance and capacity to stand or walk and get out of bed on their own will become a problem. Because the disease usually does not affect or impair a patient's mind, personality, intelligence, or memory cognitive abilities , patients are aware of their progressive loss of function and may become anxious and depressed.(Kiernan,Vucic, Cheah, Turner, Eisen, Hardiman, Burell & Zion, 2011).
Illness and suffering are events which affect people and unfortunately there is little they can do to avoid. Wrights (2005) describes illness as a wakeup call about life. This suggests that an individual is forced to reflect on his/her life style and to start examining their life’s value and mortality. In order to answer these personal questions about one’s life we begin to evaluate our own values, limitation and ultimately our beliefs (spirituality). As illness can affect changes in one’s life such as physical, social, financial and emotional, as nurses we need to be aware of and offer an opportunity to be more connected to the patient and to assist in the implement a plan which can improve their life and chances of brining some relief or healing.
Suffering is defined by Mauk and Schmidt (2004) as an ongoing state of distress which affects a person’s sense of well-being. It can be physical, emotional or spiritual in nature. When people experience suffering, it is common to ask “why me.” This question would be spiritual in that it is directed to the Force or God to whichever religion the person belongs to. I can relate this to situations where I have asked my God “why me” when I have been in crisis. It is usually at these moments that one pleads for forgiveness from their God, or feels a sense of guilt over something they have done or should have done. In some situations suffering has separated individuals from their religions as they fail to understand why they have to go through it. This can result in spiritual distress and anxiety from the removal of a previous support system. Spiritual distress may be exhibited though fear, boredom, judgement, restlessness, anxiety, panic and feelings of depression. As a nurse I must be able to identify a patient with spiritual distress and take corrective measure to help the individual. I should be able to identify my own spiritual distress and address it so that I can function and provide care at my best level.
Fear is one of the strongest emotional responses which we go through when we face threatening events or situations. As a nurse I must be able to recognise fear as an issue which patients may be experiencing and find ways of helping them to reduce its effects.
Help might be in the form of referring the patient or family to a Hospital, social worker, priest or someone they feel they can talk to. Nurses must be able to listen to the patients’ concerns and identify their fears. In this case being able to listen and answer medical questions or explain clearly to the patient something they have not understood, may be all that is required to deal with patient’s fears. I have seen patients, who are told that they must stay in hospital, but they are not why or how serious their condition is or how much time they will stay in hospital. Ronaldson (1997) is of the view that nurses must identify their profession as a journey with their patient and be able to answer important questions related to nursing.
Hope exists in every stage of disease noting that “ even the most accepting, the most realistic patients left the possibility open for some cure , for the discovery of a new drug, or the last minute success in a research project’’. (Kubler-ross, 1969, p. 139). Hope can give Bella the capacity to handle pain better and represents the possibility of a future. This has the benefits of helping her to have a positive attitude and provides her with a life direction, optimism and the ability to work on important relationships and focuses on what is achievable in the time remaining. It is also important for the patient to understand how the people closest to them, their loved ones, are dealing with or able to handle the possible loss.
Healing starts in the heart; by opening ourselves to the possibilities of life, we are able to access levels of healing beyond just the physical.
As a nurse caring for Bella, actively listening to her verbal and non-verbal communication and encouraging realistic hope to her husband and extend family and friends, relieves some of the pressure and guilt the patient may be struggling with, and opens a realistic expectation for the future. New research in medicine and treatment, referrals to psychosocial and spiritual counselling can all assist in alleviating her anxiety and diminishing her fear.
The health professional team needs to be involved in Bella’s care are:
Neurologist. This role is to collect information based on the whole story and form questions to elaborate and further identify symptoms and assist with accuracy of diagnosis; which will help in finding the most appropriate and useful treatment. The neurologist also needs to offer Bella, the option of participating in a clinical trial in order to find new research of medications that may give her hope that her condition may improve and that she can look more positively as a future with family. Other areas that the neurologist should explore are; blood tests, lumbar puncture, and electro diagnostic studies. (Kiernan et al., 2011).
Physiotherapist. This role can help Bella to strengthen her muscle and keep them strong; this can prevent stiffness of the joint and improve body balance and coordination. This type of exercise leads to increase circulation, maintain a god posture and minimise pressure sores. (Gregory, 2007).
Dietician. This role can assess her nutritional state, provide a quality of puree foods and enable the intake of small amounts of liquid each time, which, due to Bella’s swallowing difficulty this would improve her ability to speak and can be evaluated by a speech therapist. The dietician will assist in the maintenance of adequate weight gain and management, calculating daily calorie intake and body mass index. A food and fluid chart needs to be maintained to evaluate her loss or gain. At a later stage a percutaneous endoscopy gastrostomy (PEG) may be indicated to prevent malnutrition. (Golaszewski, 2007).
Weakness to her extremities may become a difficulty when performing daily activity like zipping clothing, writing, showering grooming. Occupational therapists tasks become more difficult. By arranging devices such as ambulatory aides, rolling walker, single cane, long handle shoes horns, transfer aides, splinting and bracing, button hooks, key holders , arm and foot rest, easy touch buttons card and straw holders ,universal cuffs , toilet aids , electrical bed - like a hospital style bed, bed safety rails, and neck support, large pencils for hand writing, book holders, meals on wheels as well involving her husband in her care, may go a long way to improve Bella’s quality of life. (Lewis & Rushanan, 2007).
Psychologist role is extremely beneficial. They arrange support in addition educational cessation to cope with her emotional distress, feeling and anger.
Social worker role will help to ease any financial problems, suggestions some ideas such as home carer plus joining muscular dystrophy association.
Community nurse. Can assist with encouragement and support as well as giving medication, showering, grooming along with evaluating her pain and holistic care. (Lewis & Rushanan, 2007). The health team will alleviate the pressure, the stress and anxiety that the husband may face during the process of healing and improve the quality of care and life.
A Nurse has a big role to play when dealing with spirituality, despite her personal beliefs, wants to make appropriate adjustments when it comes to spirituals needs.
She may promote optimism and hope to reduce Bella’s anxiety, depression plus fear of dying. Spirituality taps on high result to give hope, optimism and quality of life to people with chronic illness and terminal disease. In order to enhance understanding and ease healing process, nurses must put together self-care, self-responsibility, spirituality, and reflection in their lives. During this process nurse and Bella’s commonly participate in expanding consciousness.
For example the nurse may need to offer some privacy to a Muslim patient for his prayers. As a nurse I also need to respect other religions and regard each faith as unique and important, to respect their beliefs. This would allow me to provide professionalism and equal care to patients from different religions. I need to overcome any barriers to providing spiritual care to be able to respect other religious beliefs. The same would also apply to an atheist. McSherry (2006) describes these barriers as intrinsic and extrinsic factors. These may be my personal beliefs conflicting with that of the patient or situations where the patient’s religious beliefs are overlooked during admission.
The goal in nursing is to restore health to a person who is sick. This includes the physical, emotional, psychological and spiritual needs of the patient. This is referred
To as holistic nursing. I have had many opportunities to interact with patients during times when they are vulnerable. I believe it is my responsibility to ensure that during these encounters I try to ensure that all their needs are met. There is a need for the nurse to respect the integrity of the human being. I have noticed that in some health institutions patients are identified by their conditions or bed numbers. This can create problems as the patient may have other needs which may go unnoticed or be neglected because the nurses are on focussed on the condition.
I will conclude by listing skills nurses require to provide spiritual care according to McSherry (2006).
The nurse must be sensitive, have good communication skills, honesty and they need to have knowledge of their role. This allows the nurse to do their job at the right pace and to be well informed of what is going on with the patient, hence be able to respond to the patient’s questions with definite and accurate responses.
This course, including the tutorial, Dvd, lecture and presentation have helped me to be more aware of the importance of peoples beliefs and spirituality and has allowed me to gain knowledge which I can apply in my nursing career .
I have learnt how tolerance of different beliefs, compassion and effective nursing along with my own beliefs and values as a Christian can help others in difficult times. Also the strength that some patients are able to call on at these times is an inspiration and affirmation for the value of life.
After reading Bella’s story I felt better equipped to deal with people facing severe illness. I will be more focused on the healing rather than disease process. I hope to be able to rise to the challenges and rewards that these experiences can provide.
References:
Farrell, M., & Dempsey. (2011). Smeltzer and Bare’s: Text book of medical-surgical nursing (2nd ed., p.364).Australia and NewZealand.Broadway, N.S.W.: Lippincott Williams & Wilkins.
Gregory, S. A. (2007). Evaluation and management of respiratory muscle dysfunction in Amyotrophic Lateral Sclerosis. Neuro Rehabilitation 22:435-443. Retrieve 20 May 2011 from ACU Ebscot Database.
Golaszewiski, A. (2007). Nutrition throught the course of Amytrophic Lateral Sclerosis. Neuro Rehabilitation 22: 431-434. Retrieve 20 May 2011 from ACU Ebscot Database.
Ferguson, T.A., Elman, L.B. (2007).Clinical presentation and diagnosis of Amyotrophic Lateral.neuro rehabilitation 22:409-416. Retrieve 20 May 2011 from ACU Ebscot Database.
Kiernan,M.C., Vucic, S., Cheah, B. C., Turner, M.R., Eisen. A., hatdiman, O., Burrell, J.R., Ziong, M.C. (2011). Amyotrophic Lateral Sclerosis. Lancet 377: 942-955. Retrieve 20 may 2011 from ACU Ebscot Database.
Lewis, M., Rushanan, S. (2007). The role of physical therapy and occupational therapy in the treatment of Amyotrophic Lateral Sclerosis.22:451-461. Retrieve 20 May 2011 from ACU Ebscot Database
Mauk,K. L. Schmidt, N.K. (2004). Spiritual care in nursing practice. Philadelphia: Lippincott Williams & Wilkins.
Anderson, D., Novak, P. Elliot, M. (2002). Mosby’s Medical Nursing and Allied Health Dictionary. (6th ed.pp.783-870). St Louis: Mosby Inc.
Mc Sherry, W. (2006). Making sense of spirituality in nursing and health care practice. An interactive approach (2nd ed.). London: Jessica Kingsley.
Ronaldson, S. (1997). Spirituality: The heart of nursing. Melbourne: Aus. med.
Taylor, B. (2006). Reflective practice: A guide for nurses and midwives (2nd ed.). UK: Bell & Bain Ltd.
Wright, L. (2005). Spirituality, suffering, and illness: Ideas for healing, Philadelphia: F. A. Davis Coy.
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