Holistic care -neurological ds
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Holistic care in chronic neurological disease encompasses so many aspects. The patient needs a support system that will see them through a long process with declines throughout the journey which can be very difficult. After the initial diagnosis, the patient, caregiver and family redefine themselves in the family, roles and life itself, changing their world as they knew it (Sherman, 2001). The videos told the stories of Emma with Parkinson’s and Anthony with ALS, they both showed such strength and courage on how to live the best life they could with their disease. They were both diagnosed so young which was hard to watch, knowing what the diseases course lies ahead for each of them. Anthony broke my heart as he has taken care of his mom with the disease and how it has taken so much from her and to know what his own fate is through her life is so difficult to process. It is just so heartbreaking to see someone trapped inside their body that no longer works for them.
Palliative care is a holistic focus on the patient and family and not the illness, helping and supporting the patient and family while helping to improve quality of life during their illness (Matzo & Sherman, 2015). Palliative care supplies a team approach for the “whole-person suffering” that supports them medically, physically, emotionally, psychosocially and spiritually as the patient travels on their journey (Matzo & Sherman, 2015, p. 11). Both Emma and Anthony learned to embrace who they were and where they are in their disease process while grieving the pieces of themselves that they lose along their journey but living in their “now.” (Carbajal, 2019; Lawton, 2017).
First and foremost we must understand what does quality of life mean to the patient and family, where are they in their understanding of who they are in their culture, and value system and what are their goals and concerns, and understanding of their health status (O’Boyle, & Waldron, 1997).
Interventions center on goals of care and treatment of symptoms as they arise for the patient. There are many care needs that palliative care should address. Cognition including memory loss, attentional and perceptual, judgement deficits are common leading to decreased function and depending on the neurological disease the interventions differ (Molidor, Overbaugh, James & White, 2018). Communication deficits also occur related to cognitive and physical causes and can affect quality of life and lead to loneliness and frustration at not being able to communicate needs and desires (Matzo & Sherman, 2015). The nurse can help by finding ways for the person to communicate through available equipment, consistent caregivers, and other ways of communicating such as picture boards or techniques of communication depending on the disease process (Matzo & Sherman, 2015). Other care needs are related to fatigue, sleep, swallowing, pain, movement, behaviors, depression, anxiety, agitation, fears, dyspnea and others (Matzo & Sherman, 2015). As the neurological disease progresses the care burden increases and building a support system of family and community of caregivers and professional support is important (Gaventa, 2001). As the disease progresses and loss of communication and care needs increase over time, so can the loss of support system, connections and relationships (Gaventa, 2001).
Caregivers also need a lot of support and resources to be able to provide care for the patient. Families are expected to take their loved one’s home and care for them, the care being more complex than it was in the past and they have little or no training (Doka & Davidson, 2001). Nurses supply teaching, emotional support, positive reinforcement and also help the caregivers understand their own care needs (Reinhard, 2001). The current health care system does not offer a lot of support for chronic illnesses and families maybe doing a lot on their own which is increasingly difficult when they also need to work or have other family obligations (Reinhard, 2001). It is important to find and provide supportive help for the family through support groups and counseling, community, spiritual and disease group associations, and respite care (Reinhard, 2001). Families/caregivers may not have the funds to pay for extra caregivers and relief; they may experience depression, anxiety, fear, stress, crisis and burnout; the nurse and palliative team provide support and resources, advocating for the caregiver as well as the patient (Reinhard, 2001). Quality of life assessment and interventions are not only important for the patient, but also for the caregivers as they “need care to replenish their energy as caregivers and heal their grieving hearts” (Sherman, 2001. p. 264).
References
Carbajal, A. (5/15/2019). Meet Anthony, coping with ALS: My last days.
Retrieved from:
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Gaventa, B., (2001). Caregiving and loss: Family needs, professional responses. K.J.
Doka, J.D. Davidson, (Eds.) Creating and energizing caring communities (pp.
57-77) Washington, DC. Hospice Foundation of America.
Lawton, E., (6/2017). Is confidence in my DNA? TEDxLondon. Retrieved from:
se_id=_39901_1&content_id=_1234841_1
O’Boyle, C. A., Waldron, D., (1997). Quality of life issues in palliative medicine.
Journal of Neurology 244 (Supp. 4) S18, –S25 © Springer-Verlag. Retrieved
from: https://link-springer-com.ccsu.idm.oclc.org/journal/415/244/4/suppl
Matzo, M., & Sherman, D.W., (Ed.) (2015). Palliative care nursing: Quality care to the
end of Life (4th ed.). New York, NY. SpringerPublishing Company.
Molidor, S., Overbaugh, K. J., James, D., White, C., (2018). Palliative care and stroke:
An integrative review of literature. Journal of Hospice & Palliative Nursing.20 (1) 358-367. Doi: 10.1097/NJH0000000000000450
Reinhard, S., (2001). Caregiving and loss: Family needs, professional responses. K.J.
Doka, J.D. Davidson, (Eds.) Nursing’s role in family caregiver support (pp. 181-
190) Washington, DC. Hospice Foundation of America.
Sherman, D., (2001). Caregiving and loss: Family needs, professional responses. K.J.
Doka, J.D. Davidson, (Eds.) The reciprocal suffering of caregivers (pp. 247-
264) Washington, DC. Hospice Foundation of America.
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