End-Of-Life-Care for Intellectual Disabilities.’
INTRODUCTION
End-of-life-care is explained by King as an individual’s well-being with an extreme condition that is advancing, escalating, and has no known treatment. End of life care needs various resolutions that revolve around palliative care queries, patients’ freedom of nursing, the medical exploration of the ethics and efficiency of unique or dangerous mediations, and the principles and effectiveness regarding constant sequence medical involvement. These resolutions are instructed by practical, medical deliberations, economic aspects, and also moral philosophy.
Palliative care offers services to end of life patients, and its objective is to provide care through prime recognition and faultless evaluation and medication of pain and various concerns. Palliative care incorporates the psychological and spiritual concepts of a patient’s well-being, keeping and guides patients to live purposefully as they can and provides a support anchor for the patient relatives to manage their member’s sickness and their grief.
Palliative care strongly relies on the nurses’ possession of strong interactive abilities and clinical proficiency. and being informed and aim for the patient and moral standards of self-governance, benevolence, altruism, and impartiality.
Nurses are deeply involved in the well-being keeping for patients at the end of their existence. As a result various standards and ethical codes have been established by the nursing boards and associations, which governs the nurses’ actions and keeps them in line as they perform their responsibilities
Communication, knowledgeable practitioners, inadequate medications and improved medical facilities and equipment are some of the main challenges faced in providing palliative care. However, improving facilities and equally distributing qualified practitioners can alleviate some of thebarriers. Also, establishment of training programs to upgrade the nurses’ proficiency. And synergizing with various entities like the government and other medical facilities, greatly increases the efficiency of palliative care services.
Target Audience
This document can applies to Third Year Undergraduate Nursing Students and New Graduate Registered Nurses. It’s also essential to Patients, Family members, Physicians, staff, Hospitals, NFs, LFs, Community/general public, and palliative care Payers.
By supporting palliative care nurses in efficiently performing their duties to end-of-life care, the nurses can understand the people involved desires and their abilities to assess their support importance and sufficiency.
Outcomes and Learning Objectives
The main objective of the study is to:
- Demonstrate an understanding of intellectual disability and the nurses’ role in providing EOLC
- Awareness of the barriers in providing EOLC
- Engagements in minimizing barriers
- Critically apply nursing ethical and legal requirements when providing EOLC
- Signifying connections between intellectual disabilities and the National Palliative Care Standards.
Understanding Intellectual Disability
It is approximated that eighty percent of individuals with dysfunction conditions come from low-income economies. According to Scior, different persons have different potentials that evolve at their own pace. Certain persons may find learning and comprehension of ideas complicated due to Intellectual Disability (ID).
Intellectual Disability refers to a person’s situation of various challenges in apprehension potentiality and expertise, as well as conversing, communal as personal hygiene maintenance abilities. These challenges occur to infants before they are of age or before birth, where they are characterized with slow maturity and comprehension than healthy growing children. A person is deemed intellectually disable if their IQ is below 70 to 75, where a person faces challenges in developing abilities to maintain their well-being, work, live or interact with others (Scior, 2016).
Regardless it is good to note that intellectual disability is very different from mental sickness and is not contagious; and can result from ailments, brain issues, or injuries, but the causes are undiscovered in some cases.
In situations like the Down syndrome, Fetal Alcohol Syndrome, Fragile X syndrome, congenital disabilities, and infections often arise before birth and others immediately after a child is born. The frequent causes of ID are abnormal genetics absorbed from the parents or misconceptions due to mixing genes like the phenylketonuria (PKU). Pregnancy impediments and complications during delivery are also a common cause of ID, due to poor development of the fetus. If an infant lacks enough oxygen during birth or concerns in labor, it can also cause ID. Also, ailments or poison exposure like whooping cough, measles, or meningitis can cause intellectual disabilities (Faull & Blankley, 2015).
Nurses’ Role in End-Of-Lie-Care Services
Palliative care’s main objective is to support patients to live as actively as possible and maintain dignity and alternatives through the end of life. The essential obligations and responsibilities consist of being available, which allows nurses a crucial role in palliative care and presents opportunities for becoming a supervisor of care for patients and their families and various health caregivers. Taking care of intelligent disabled patients requires
- dedication,
- time, and
- good-hearted attitudes from the nurses with
- High levels of understanding.
Health expertise is needed to be focused on comprehending the person’s conversations to confirm the correct symptoms and indications for precise diagnosis and handle the subject concerns with a more humanitarian attitude. Also, they need to comprehend consent problems and ensure the certainty of the patients’ involvement in all resolutions by cooperating with the patients’ relatives, carers and supporters, communicating appropriately, and working together. The patient is the essential person in the care facility centers; thus, it is critical to give excellent palliative attention.
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The nurse is the connections between the various divisions of health care, amongst different experts and between patients and their relatives, which contributes to certifying that standard attention is given to the individual patient. Allow personalized designed end of life care to patients with intellectual disabilities and life-threatening illnesses and their families, and the nurses require more proficiency in primary nursing. The palliative nurse’s primary obligations are to lengthen the quality of ailing patient’s existence with their families, by:
- Controlling, infant recognition, and evaluation of pain and possible issues regardless of their interpersonal, emotional, psychological, or spiritual nature.
- The nurses are responsible for monitoring patients, controlling pain, administering medication, and managing gadgets.
- Giving individual patient care, like bathing and dressing (Atkins et al., 2020).
(Okçin, Figen 2019).nursing attributes in palliative care
Barriers to Effective EOLC and their Solutions
According to Ferrell & Coyle, 2015 nursing working under palliative care is faced with challenges in dispensing maximum palliative keeping and end of life care to their patients due to insufficient and lack of proficiency in palliative care and end of life care. This challenges nurses in practical, relational, and ethical angles of care and make requirements on their role in a detailed manner subject to the health practice are:
- Communication challenges,
- Inadequate facilities,
- Knowledgeable practitioners,
- Insufficient medicines,
- Inadequate medical equipment
For nurses to effectively perform their duties at the end of life care there requires;
- Transparent and improved programs from the state authorities to support the doctors and nurses in evolving their skills.
- Enough facilities and medical equipment should be increased.
- The introduction of teaching and training programs should be implemented for nurses to develop their working experience (Kissane et al., 2017).
- Palliative care and topics linked with the end of life should be incorporated into nursing courses to comprehend their patients’ handling.
- The authorities should disperse the health workers with sufficient knowledge equally to various facilities and homes involved in palliative care.
- Encouragement of interdisciplinary collaboration among health facilities, centers, and regional communities by the governing authorities is essential to empower end of life care nurses with more proficiency (Kissane et al., 2017).
Obtained from: https://bjgp.org/content/66/650/e647
Ethical and Legal Requirements in EOLC
Nurses often become witnesses to the conflicting and challenging decisions involved with EOLC patients and their families concerning the emotional circumstances. Nurses have their specific and unique norms, principles, and customs to adhere to, although certain things do not rhyme with patients’ beliefs, cultures, or desires, resulting in internal disputes. Nevertheless, of all mediations and treatments, nurses need to dedicate their efforts in supporting the patient to consider the benefits and challenges of the arbitration, instead of dwelling on the intervention alone (Macauley, 2018).
Nurses require comprehension of the concerns that can emerge in the course of life resolutions to prepare for the outcome properly and have an idea of what to do in the situations. They should possess a primary understanding of palliative care’s nature and the principles of attention available in the standard of professional Nursing Practice from the Australian Nursing Association. And, the nurses can reference from the Code of Ethics for Nurses with Interpretive (Browne et al., 2018).
The primary ethical standard applied outlines for nurses and chiropractors in the keeping, and patients’ resolution is
- Impartiality or justice,
- beneficence,
- self-governance or autonomy, and
- Altruism or beneficence
These ethics ensures that the patients’ freedom is safeguarded as required by the primary moral standards.
Intellectual Disabilities and the National Palliative Care Standards.
Palliative care should steer its primary objective in catering to patients’ needs, desires, and principles, their families, and professions. An individual and family-oriented attitude to end-of-life-care thrive on successful communication, combined and cooperated resolution processes, and individual autarchy foundations.
As individuals with intellectual dysfunctions life expectancy increases, they often diminish due to old age ailing like cancer. As a result, intelligent dysfunctioning persons will need excellent personal care services at the end of their lives (Martzo & Sherman, 2018).
The National Palliative Care Standards distinctively illuminate and stimulate inspiration for a compassionate and necessary professional palliative care. The principals identify the essence of is individual-oriented and within the acceptable age gap and require special attention due to the vulnerability. The standards are critical to the professional palliative care services with a sole practitioner and more extensive services that are more resourced with detailed investigations and training responsibilities. There are universal prescriptive principles that include inspirational aspects that aid the services with developing capacity and potential.
It is evident that with good cooperation from palliative care centers and intellectual dysfunction centers, persons with intellectual disabilities usually experience the best end of life assistance. The national palliative standards ensure the palliative caregivers provide the best possible care without going against the patients’ will. An establishment of the responsible co-ordinators of the attention is outlined (Martzo & Sherman, 2018)
Question
What makes a good palliative care nurse?
References
Atkins, K., Lacey, S. D., Ripperger, B., & Ripperger, R. (2020). Ethics and law for Australian nurses. Cambridge University Press.
Browne, C., Wall, P., Batt, S., & Bennett, R. (2018). Understanding perceptions of nursing professional identity in students entering an Australian undergraduate nursing degree. Nurse Education in Practice, 32, 90-96. https://doi.org/10.1016/j.nepr.2018.07.006
Coyle, N., & Paice, J. A. (2015). Oxford textbook of palliative nursing. Oxford University Press, USA.
Faull, C., & Blankley, K. (2015). Palliative care. Oxford University Press, USA.
Ferrell, B. R., & Coyle, N. (2015). Oxford textbook of palliative nursing. https://doi.org/10.1093/med/9780199332342.001.0001
King, G. (2017). Providing quality care at the end of life. A Textbook of Community Nursing, 267-288. https://doi.org/10.1201/9781315157207-14
Kissane, D. W., Bultz, B. D., Butow, P. N., Noble, S., Bylund, C. L., Clinical Reader, and Palliative Medicine Consultant Simon Noble, & Wilkinson, S. (2017). Oxford textbook of communication in oncology and palliative care. Oxford University Press.
Macauley, R. C. (2018). Ethics in palliative care. Oxford Medicine Online. https://doi.org/10.1093/med/9780199313945.001.0001
Martzo, F. M., & Sherman, D. W. (2018). Palliative care nursing: Quality care to the end of life (5th ed.). Springer Publishing Company.
Scior, K. (2016). Toward understanding intellectual disability stigma: Introduction. Intellectual Disability and Stigma, 3-13. https://doi.org/10.1057/978-1-137-52499-7_1
Okçin, Figen. (2019). Onkoloji Palyatif Bakım Hemşirelerinin Mesleki Yaşam Deneyimlerinin İncelenmesi. Celal Bayar Üniversitesi Sağlık Bilimleri Enstitüsü Dergisi. 10.34087/cbusbed.578767.