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Chapter 7 focuses on the research in the previous chapters concerning moral distress as applied to LTC at the end of life. The care provided to patients at the end of life is frequently acknowledged as being ethically complex. End of-life care is often seen as fragmented, marked by poor communication among the care providers and a lack of consensus regarding the plan of care. The treatment decisions that are made regarding end of life can affect the patient, the family members or others close to the patient, and the caregivers providing the care. In the case of the caregivers, issues of moral distress can arise when the caregiver thinks the treatment decisions are morally wrong or when health professionals feel forced into following end-of-life policies that they believe are causing harm to the patient. Specific responses to reducing moral distress when providing care at the end of life will be discussed from a systems perspective. The impact of the culture on end-of-life care, the role of leadership in supporting cultural sensitivity, and the methods of communication used will be shown to have a positive impact on

acknowledging and reducing incidents of moral distress when addressed systematically throughout the organization.

1. The Role of Culture and Compassion at the End of Life

Although great strides have been made in attempting to challenge the contemporary thinking that people go to nursing homes to die, it is true that those working in nursing homes are

confronted with death on what might be regarded as a somewhat routine basis. A 2010 study conducted by the Brown University Center for Gerontology and Healthcare Research found that approximately one in two Americans 85 years of age and older die in nursing homes. Issues surrounding end-of-life decision making can often lead to disagreements among the staff regarding issues of respect for resident autonomy and those that surround the quality of life and quality of care for the patient. How an organization comes to address the dying process from a systems perspective can play an important role in helping to reduce the experience of moral distress for caregivers. How to maintain the dignity of each patient in what becomes an often- repeated event is critical to maintaining the humanity of all those involved in providing care, including the healthcare practitioner whose job it is to provide support and comfort for the dying resident.

Unlike the acute care setting, where patients and their caregivers may not have the time necessary to establish a relationship, residents in LTC communities often have lengths of stays extending for a number of years. During that time, relationships develop that are beneficial to both the patient and the caregiver. These relationships, however, make it much for painful for caregivers when each of the people they have befriended pass away. The need to provide compassionate care at the end of life is an essential component both for the patient and for the caregiver. Immanuel Kant presented a specific notion of compassion when he expressed his belief that while it may not be our duty to feel compassion, it is our duty to nurture the capacity in us to feel it. When we confront issues of moral distress, this duty to nurture the capacity for compassion becomes a shared responsibility on the part of the organization with the caregiver. It is addressed through a system-wide acknowledgement of the importance of the leadership of the

throughout the organization. Compassion, just as experiences of moral distress, is individualized, requiring strength and courage on the part of the caregiver. In seeking to connect with their patients as human beings, caregivers exposes themselves to a degree of vulnerability which, if not recognized and supported, can lead to experiences of moral distress over time. Institutional support in the form of ethics education and mechanisms for follow-up discussions regarding care that was viewed by the caregiver as being ethically challenging can help to establish a culture that provides support for the caregiver and compassionate care for the patient.

2. Leadership and Cultural Sensitivity

One strategy to reduce the amount of moral distress experienced by healthcare providers who participate in end-of-life care is to provide support and advocacy for those experiencing the symptoms of moral distress. Active listening, in a non-biased environment can prove to be beneficial to both the individual and the organization. Education offered on an interdisciplinary basis and collegial practices are two strategies that can be initiated to reduce moral distress. Open collegiality and models of shared practice can help to establish a sense of shared

responsibility and minimize feelings of moral distress. This shared responsibility is particularly helpful when supporting end-of-life decision making because it helps to provide support and to share the burden of repeated involvement in end of life care.

An organization whose mission, vision, and values are aligned with its operating policies and expectations of employees at all levels of the organization is well positioned to enhance the moral character of the organization and, in so doing, to minimize the experience of moral distress for employees. Though issues such as moral ambiguity, lack of moral discussions within the organization, lack of ethics education for the workforce, and a diffusion of responsibility among employees all serve to perpetuate incidences of moral distress, proactive measures to address

these issues have been found to effectively reduce such distress. The cultural values of the healthcare organization should be evidenced within it through shared values, ones that lead to action, and in creating an environment where all those interacting with the organization feel safe in bringing their issues forward for discussion.

3. Communication and the Empowerment of Caregivers to Address Moral Distress One means of identifying whether or not a given circumstance might lead to or has led to moral distress was developed by the American Association of Critical Care Nurses. The method, called “The 4 A’s,” is an effort to empower employees to take control over their own situations and work to reduce their own moral distress. The association recommends that healthcare practitioners first ASK themselves if what they are feeling is consistent with the definition of moral distress, as discussed in Chapter 3. If moral distress is a concern, they recommend that practitioners AFFIRM their own feelings on the issue to determine what aspect of their moral integrity is being threatened, ASSESS what is believed to be the correct course of action, and ACT by developing a plan to address the source of the distress. The “4 A’s” ( ASK, AFFIRM, ASSESS and ACT ) empower the practitioner to take corrective action, first by acknowledging that the circumstances being confronted could lead to moral distress, and then followed by the support in actions to relieve such distress.

While this approach places a great deal of responsibility on the individual practitioner, if all other systems are in place within the organization (a supportive culture, respect of each employee reinforced by strong leadership, and methods of communication that are open and non- threatening), the 4A’s approach might prove to be a valuable method for combating the negative effects of moral distress. Conversely, if the systems are not in place for appropriate support of a

practitioners who use the 4 A’s, they may experience additional distress from not being heard and/or valued.

4. Systemic Measures for Reducing Moral Distress in End-of-life Care

It is hopeful that proven methods do exist which can have a positive impact on reducing incidents of moral distress for the caregiver. One such system-wide approach with the ability to be readily transferred to the LTC setting is the Moral Distress Consult Service (MDCS). This service, which was first developed and implemented at Virginia Commonwealth University Hospital, functions in much the same manner as the ethics consultation service. One distinction of the MDCS is that it focuses exclusively on issues that have resulted in morally distressed staff versus the more common approach of addressing more general ethical dilemmas resulting from clinical cases. The primary purpose of the MDCA is to minimize and ultimately prevent the crescendo effect by proactively addressing morally complex issues. Building relationships is a critically important element within an organization that is often neglected or underestimated. Efforts to bring people together to address common challenges, such as those found throughout the LTC environment, can serve as a strong indicator to employees that the organization has a desire to address individual issues of moral distress.

A second approach, and one of the most effective means for addressing and ideally preventing issues of moral distress and which succeeds system wide, was developed by the Schwartz Center for Compassionate Care in Boston, MA. Established in 1995 at the bequest of a Boston healthcare attorney with terminal cancer, the Schwartz center was established with one goal in mind: “to promote compassionate care so that patients and their caregivers relate to one

another in a way that provides hope to the patient, support to the caregivers and sustenance to the healing process.”

One of the hallmarks of the Schwartz Center is their advocacy and promotion of what they term Schwartz Center Rounds. These rounds are of particular importance in the current discussion regarding end-of-life care and moral distress as they provide an opportunity for healthcare providers to meet at a regularly scheduled time to discuss social and emotional issues they are experiencing in caring for their patients. The Schwartz Center Rounds provide an excellent example of a system-wide initiative as these discussions involve trust on the part of the administration in sharing what may have been errors in medical judgment, trust, and

empowerment of the employees who have the courage to share their emotional turmoil, and systems that support the free exchange of confidential information for the purpose of minimizing the emotional distress of the caregiver. In addition, the sessions provide an opportunity for learning that results from receiving feedback on other courses of action that might have been possible and might have produced more positive outcomes.