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In terms of end of life care, also called palliative care, nurses face some of the most challenging ethical dilemmas in the field of healthcare, especially as they are responsible for patient advocacy. Patient advocacy extends far beyond its basic definition of making decisions based on what is best for (and within the acceptable limits) of a patient and can often require rapid decision-making skills, management and negotiation with other members of the health care team, and most importantly, management of the relationship with the terminal patient, the associated wishes of that patient, and the family members present.
The most important point about nursing advocacy in the context of end of life care is the ultimate respect for patient rights and patient self-determination. While more emphasis and greater opportunities for patients to express their wishes formally in directives or other written consent and guide forms, this is not always the case, thus the inherent value of a patient’s rights to die with dignity should be the determining factor when making important ethical decisions for, with, or through the family of a dying patient. What is vital for a better quality of care to emerge in a universal sense, extending across all treatment settings, is an enhanced awareness of the value of patient self-determination and patient rights as a foundation for any decisions a nurse might make. Nurses must be better trained in these issues and to see the patient and his or her family as the guidepost for decision-making whenever possible, even (and sometimes, especially) in cases where questions of the termination of life are at the forefront.
One of the most salient principles expressed in the Code of Ethics for Nurses (2001) is that no matter the health condition, all patients are of equal inherent worth despite the “disease, disability, functional status, or proximity to death” (7). Not only is this a sound statement for nurses who handle patients who are expected to recover, this is worth particular scrutiny for nurses who face ethical issues in end of life care. Quite simply stated, patients who are incapacitated or who not expected to make a recovery deserve the same level of care and sensitivity as the patients whom are able to walk away on the same day do. It is when patients at the end of life do not receive such treatment or are denied vital rights that the most complex issues of end of life care emerge. It is at this level that the matter of advocacy is most important. Nurse advocacy in the context of end of life care has been defined as including protection of the patient, careful listening to the patient and family, ethical decision-making, and the promotion a patient’s overall well-being and comfort” (Thacker, 2008, p. 176). If the primary goal of supporting a patient’s self-direction is followed, these critical elements of patient advocacy should follow naturally.
In addition to more practical complications that end of life care nurses face, the most basic, yet most important ethical matter is the rights of a terminal patient—as well as those of his or her family—to be respected as much as possible and with minimal interference or deviance from the patient’s or family’s wishes, if at all possible. The most efficient way to determine the end of life course of care is to first consult with the family and patient and to examine any presence of a written directive that explains specific palliative care desires in a legally-binding document. Without such written guides, some nurses can find themselves in stressful situations with the patient, family, or the doctors and other nurses about proper courses of action and more complex, often quick ethical decision-making skills will be required. While the issue of physician assisted suicide often tops of the list when considering the complex ethical dilemmas end of life care nurses face, many of them begin to seem less complicated when considered in the context of patient self-determination.
Aside from the legally-disputed active form of assisted suicide, more common matters such as the withholding of treatment or its direct refusal emerge repeatedly. What is important is that the (active or passive) nature of euthanasia in all of its forms should not be seen as an ethical matter for the nurses individually as they should not have the final word about a course of treatment withholding, for example unless to do so would endanger someone else. Nurses should have considered in a personal, private way their beliefs on life and death but ultimately, to act in a truly ethical manner, the words and wishes of the patient are the only words that matter in most cases. This is a contentious issue as so many nurses (and those outside of the healthcare field) often have strong opinions about the right to die versus the inherent sanctity of life but the hospital or care setting is not a place for those philosophical tensions to emerge, particularly if the patient’s wishes are clearly stated. In the heated debates over the active euthanasia issues, another important factor related to assisted suicide in end of life care that requires ethical guidelines is the matter of futile treatment. One definition of futile treatment is treatment that after being administered to the best of medical ability, “is unable to achieve its physiologic objective” ((Porter, Johnson, & Warren, 2005, p. 86). One example that the authors note is when CPR is administered repeatedly to no end although this can also extend to situations where the effectiveness of a treatment is far less determinable and much more open to speculation. Where there are no guidelines, the work and combined skill of the health care team is necessary but ultimately, this is the realm of the nurse in the fulfillment of his or her duties as advocate.
Nurses are not without guides in end of life care issues, especially if the patient has already made his or her wishes clear. The Patient Self Determination Act of 1990 took some of the responsibility out of the hands of nurses during end of the life care as this law provided patients with the ability to create and state their own Advance Directives. Still, despite these provisions, one estimate suggests that less than 25% of Americans have taken advantage of this important step in solidifying their wishes near the end of their lives (Gamble, 2008, p. 14). When there is an absence of directly stated patient desires, nurses must work to effectively take all elements of the family, personal, cultural, and general medical situation into account. This is where the important concept of “patient self-determination” stressed in the Nurses Code of Ethics (2001) is most essential. What this self-determination implies is that the rights and wishes of the patient and his or her family are given priority over, for instance, the way a particular nurse or group of healthcare providers on hand think would be best. This recognition of the patient’s rights is supported when nurses “participate in discussions with surrogates, provide guidance and referral to other resources as necessary, and identify and address problems in decision-making” (American Nurses Association, 2002, p. 9).
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