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Just as important as respecting patient self-determination is actual follow-through on the part of the nurses; there have been documented (and highly-publicized) accounts of nurses who defy the patients written or verbally stated end of life wishes, which is one of the most egregious possible violations not only of a patient’s rights as a human being, but the main underlying principles of the Code of Ethics for those in end of life nursing care settings.
Nurses, while given standards of ethical decision making in their formal education and through doctrines such as the Nurses Code of Ethics, for instance, must be made aware of the host of nuanced issues at play with each individual patient. Furthermore, these skills are vital as more people than ever are requiring services from end of life nursing personnel. According to one estimate, “the majority of adults wish to be cared for at home if they are terminally ill, but the reality is that less than 29% enroll in home hospice services, leaving the majority of end-of-life care to acute and long-term care institutions (Thacker, 2008, p.175). In other words, end of care nursing ethical issues will require more attention as medical technology improves (which means life-sustainment might be extended, for instance) and as more people use end of care nursing services during their last days. The most important component of the care these people receive is the advocacy provided by the nurse in the form of complete information for the purposes of allowing for qualified decision-making, and most importantly, for support in the process. Nurses must act as the protectors of the patient’s interests and wishes, which can sometimes be complicated family, a lack of clear wishes stated, or by the competing demands made by other members of the health care team. If nurses tune themselves into their own directive—to be the advocate and hold self-determination above all else, they can provide the best, most ethically-sound treatment possible.
There are multiple common end of life ethical dilemmas nurses in palliative care confront on a regular basis, including “identifying futile treatments and establishing patient self-determination through advance directives, living wills, durable power of attorney, and do not resuscitate (DNR) orders” (Porter, Johnson, & Warren, 2005, p. 83) but what emerges from a categorization of these matters these nurses address is that they all boil down to the wishes and needs of the patient, not the doctors or end of life nursing team. The only time it is appropriate to deviate from patient self-determination as it expressed in these many issues is when the decision made by the patient or his or her family will have a negative external effect. For instance, a family and the patient might decide that an advanced infection is impossible to fight off and to allow the loved one to pass. This would be complex as there may be a workable treatment and also, there is a risk of potential spread of the infection to others if left untreated. This is one extreme example, but with many situations end of life care nurses address, it is not out of the realm of possibility. In fact, the mere possibility that on a daily basis a nurse may have to encounter a case-specific ethical decision that provides little frame of reference for swift action is important. Only through proper training of nurses and far more open discussion about palliative care, ethics, and the intersection of patient self-determination can issues such as these be addressed and discussed to provide better reactionary courses of action.
Thacker (2008) states that “death and dying are touched on in the core curriculum of most nursing schools, but treatment is often limited to a single lecture, a brief class discussion, or a series of assigned readings” (p. 176) which the author cites as one of the major weaknesses causing problems with end of care nursing and poor ethical decision-making practices. Gamble (2008) notes that it is important for nurses to have hands-on experiences in end of life situations before they actually enter practice. This experience would provide them with a firm understanding of how disagreements with the family, among the patient’s family members themselves, or even within the healthcare providers (doctors and nurses) can complicate an already tense situation. Within the larger field of nursing, this is one of the most challenging possible situations to be confronted with, especially when opinions are vying with another and the nurse is called upon to make decisions that are both medically and ethically prudent in a professional sense and that also take into consider the dying patient’s culture, family, and of course, wishes if they have been stated. There are few imaginable situations in which end of life care is not complicated, even in the event of an expected or anticipated death that is greeted with calm preparedness. To echo Gamble’s sentiments, ethical issues as they relate to end of life care should be emphasized for all nurses before they faced with a situation in which they have little formal frame of reference. In addition, a careful review of the Nurses Code of Ethics in regards to this particular aspect is essential.
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References
American Nurses Association.(2001). Code of Ethics for Nurses with Interpretive Statements. Silver Springs, MD: American Nurses Association Publishing Programs, pg. 7-9.
Gamble M. (2008). Ethically speaking. The nurses’ role in end of life issues. Minnesota Nursing Accent, 80(3), 14-16.
Thacker, K. S. (2008). Nurses’ advocacy behaviors in end-of-life nursing care. Nursing Ethics, 15(2), 174-185.
Porter, T., Johnson, P., & Warren, N. A. (2005). Bioethical Issues Concerning Death. Critical Care Nursing Quarterly, 28(1), 85-92.
Wainwright P. & Gallagher, A. (2007). Terminal sedation: promoting ethical nursing practice… Art and science ethical decision-making: 3.Nursing Standard, 21(34), 42-4.
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