Within the definition of ethics is the concept of morality. Morality addresses that which is regarded as right or wrong. The term encompasses three contexts: individual conscience; systems of principles and judgments, sometimes called moral values, shared within a cultural, religious, secular, professional, or philosophical community; and codes of behavior or conduct derived from these systems.¹⁵ Morality also comprises the making of judgments about what is right in given circumstances and the guidance of one’s conduct by reason.¹⁶ It suggests doing what seems right while giving equal weight to the interests of each individual who will be affected by one’s conduct. Six moral principles that are of particular importance in nursing practice are autonomy, beneficence, nonmaleficence, justice, fidelity, and dignity.¹⁷

Principles are guidelines and, as such, are not absolute in their application to situations. This is also true of moral and ethical principles. It is not uncommon to have more than one principle applicable to a situation simultaneously. Someone must determine which principle takes precedence in the given situation and why. These dilemmas are what make ethical decision making so difficult at times.

Legality refers to lawfulness or the obligations imposed by law to bind certain behaviors within a society. The professional nurse, licensed to practice in a particular state, is bound by the laws within that state. Each state has its own Nurse Practice Act that defines professional nursing practice within that state. In addition, there are other laws and legal decisions related to health care issues that set a precedent for practice within that state and, often, nationally. A landmark case, a precedent-setting decision is the Karen Quinlan case¹⁹ in which ventilatory support was withdrawn to support the wishes of a young patient in a PVS.

Laws and legal precedents related to health care matters may originate at the state or federal levels. The judicial system is divided into municipal, state, and federal courts. The right to appeal to a higher court is provided as a safeguard to protect individual and group rights. Some cases related to health care have reached the U.S. Supreme Court. Laws reflect the values and beliefs of society and thus are subject to review and to change. Although an act is legal, it may not seem moral to some individuals or groups. In a rapidly changing society such as that of the United States, challenges to current laws are common. With respect to health care issues, the changing and competing values and beliefs of a heterogeneous society, along with the unprecedented development of technology, account for the number of health-related issues referred to the courts.

Decision making includes distinct, logically organized steps that require choosing alternative courses of action. These steps include collecting relevant data, analyzing data, proposing alternative solutions, identifying the pros and cons of each alternative, and selecting the best alternative based on established criteria.

Ethical decision making is often centered around EOL issues and is generally accepted as an integral part of medical and nursing practice, regardless of the setting. However, the landmark SUPPORT Study (1995)²¹ identified poor communication in EOL care resulting in life-sustaining measures that went against patient care preferences and dying patient with moderate to severe pain. Since this study was published, much research has been focused on improving communication in EOL care, but until recently, little attention has been given to describe the complex role of nursing care for dying patients. In 2011, a systematic review of the literature was published by faculty from the Duke University School of Nursing that identified common themes in the roles and strategies of nurses in EOL decision making in an acute care setting.²² The review included studies from 1996 until 2011 and incorporated 44 studies. Three unique themes or roles were identified as unique to EOL nursing and include information broker, supporter, and advocate.²²

First, nurses serve a role as information brokers, communicating information about the patient and family to the health care team for the purpose of facilitating EOL discussions. Secondly, nurses assume a role of supporters, helping to provide patients and their families educational and emotional support needed to process information and make difficult decisions. Thirdly, nurses serve as advocates, catalyzing communication and negotiating between physicians, patients, and their family members to promote clarity and support patient care preferences during EOL discussions. The study suggests, “when nurses are actively engaged with family members by interpreting and explaining to them what is happening and explaining prognoses, family members are more satisfied and able to move forward in their acceptance and decision making.”²²

APRNs have a collaborative role in the PCT, working with physicians and other palliative care members in active practice to deliver direct patient care and related health care services to patients and families. Clinical practice responsibilities include the following: performance of bedside palliative care patient/family evaluation; assistance with diagnosis, treatment, and management of acute and chronic health conditions; ordering, performance, and interpretation of laboratory and radiology tests within scope of professional practice; prescribing medications including controlled substances to the extent delegated by the licensed authority; ordering treatments and durable medical equipment as indicated; performance of other therapeutic or corrective measures as indicated, including urgent care; consulting with palliative care physician or designees as needed; informing primary physician of services provided and collaborates with other physicians, as appropriate; assisting with all facets of care coordination for referrals; preparing and maintenance of accurate patient documentation to support sound medical practice and reimbursement for services; compliance with applicable laws and regulations with respect to collaborative agreements; initiation of reimbursement for services rendered; provision of training and continuing education for staff; assistance in development of clinical practice guidelines/standards in support of quality care; and adherence to the practice of confidentiality regarding patients, families, and staff.²⁵

In July 2001, Promoting Excellence in End-of-Life Care, a national program office of The Robert Wood Johnson Foundation, convened a group of APRNs to discuss the state of palliative care advanced practice nursing in the United States, to identify gaps in and barriers to that practice, and to develop strategies for the future. The report from this day-and-a-half-long meeting, Pioneering Practices in Palliative Care, had three objectives: to facilitate conversation among nursing leaders about how to improve the state of palliative care advanced practice nursing, to illustrate successful models of pioneers in advanced practice nursing, and to promote the advanced practice nurse’s role in providing palliative care.²⁹ Additional roles delineated in this report expand beyond clinical practice and may include the following.

Social workers are core members of the PCT, along with health professionals from medicine and nursing.²³, ²⁴, ²⁵ Roles of social workers are many and include the following: provision of psychosocial support to palliative care patients; attendance at weekly IDT meetings to review active cases; assistance with facilitation of patient/family meetings to clarify goals and plan of care; coordination of team efforts with appropriate hospital departments to ensure smooth discharge planning, follow-up, and continuity of postdischarge; attendance of monthly and periodic team meetings for operational and administrative functions of the palliative care service; assistance of palliative care program services; coordination of educational and outreach services; participation in quality improvement initiatives; and linking team efforts with other hospital departments and with outpatient and community services. Successful coordination of services and access to care relies on the efforts of social workers, as they are experts in resource allocation, serving as community liaisons for hospices, home health care, and nursing home placement.²⁵

Palliative programs are typically physician-led with physicians’ board certified in palliative medicine. Palliative care physicians’ responsibilities include the following: provision of inpatient consultation services in palliative care; facilitating and clarifying patient and family goals of care; performing consultation with the attending physician and the IDT to establish a written plan of care at intervals specified in the plan; facilitation of access to appropriate supportive care services; education of staff and coworkers; provision of full and appropriate documentation of patient care services to support professional billing for these services; participation in on-call coverage with the IDT; participation in weekly IDT meetings to review active cases; assistance in the development of standards of care; and adherence to the practice of confidentiality regarding patients, families, staff, and the organization.²⁵

Frequent updates regarding the patient’s condition and prognosis in a caring, gentle manner are necessary. Nurses should know what information has been provided to the family because clarification and reinforcement may be necessary. People in high-stress situations often do not absorb all of the information provided, and may need repetition. Questions raised by the family with the nurse may need to be referred to the physician. The nurse is responsible for notifying the physician about family concerns and the possible need for a family meeting.

The steps of an ideal family meeting are well documented in the literature.³⁰, ³¹, ³² However, orchestrating and implementing effective communications in real-time patient care has proven more elusive, with physicians dominating family meetings rather than listening to family members’ concerns and questions.³¹, ³³ While the attending physician usually leads a family meeting, the nurse should be familiar with the essentials of conducting a family meeting and to help prompt the physician if steps are missed.

The steps in conducting a family meeting include the following.