Ethical Perspectives and End-of-Life Care

Ethical Perspectives and End-of-Life Care

Shannon E. Pearce

Joanne V. Hickey

The ethical dimensions of conduct in professional practice are especially compelling and complex in many situations faced by the neuroscience nurse. The primary focus of this chapter is clinical ethics and end-of-life (EOL) care in neuroscience nursing practice. The Code of Ethics for Nurses with Interpretive Statements published by the American Association of Nurses provides a broad perspective of the standards of ethical conduct for nurses.1 In addition, the International Council of Nurses (ICN) also provides the ICN Code of Ethics for Nurses.2 The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life (QOL) of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”3, 4

Though the terms palliative care and hospice are often used interchangeably, palliative care is appropriate at the time of terminal diagnosis (from curative to comfort care), while hospice care is administered solely to terminally ill patients with a life expectancy of 6 months or less. Both palliative and hospice services seek to prevent and/or alleviate suffering from symptoms of life-threatening illness. However, aggressive symptom management can also promote functional independence and extend curative and life-prolonging treatment options for potentially nonterminally ill patients. Evidence suggest patients assigned to early palliative care have a better QOL, lower incidence of depression, and longer longevity than without palliative care services.5, 6 Optimal EOL care is best achieved when medical treatment options are a balance of risks and benefits for both curative and palliative care.


Compared to other countries of the world, the United States (US) lags behind in providing palliative care services to terminally ill patients, according to a recent report from the Economist Intelligence Unit (EIU).7 The United States is ranked ninth in the world, only modestly higher than Hungary and France, for quality of EOL care.7 However, growth of palliative medicine utilization among US hospitals is approximated to be 138.8% from 2000 to 2009, with the largest surge of palliative medicine growth in the Northeast and the slowest growth in the South.8 In 2009, the National Hospice and Palliative Care Organization (NHPCO) reported that approximately 41.6% of all deaths in the United States occurred when the person was receiving care within a hospice program with a median (50th percentile) length of service recorded at 21.1 days.9 Unfortunately, utilization of hospice care services falls short of the proposed benefit yield of 6 months.

Recent national health care reform to promote modest reimbursement for physicians to initiate discussion of EOL care failed due to the public’s fear of governmental “death panels.” However, some states are shifting in favor of legitimizing palliative medicine as a viable option for terminally ill persons. Specifically, the Palliative Care Patient Information Act of 2011 (New York) and California Right To Know End-Of-Life Options Act of 2008 mandate health care providers to discuss legal and medical options for EOL care for all patients diagnosed with a terminal illness.

Analyses conducted by the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) cite the prevalence of palliative care programs to range from 54% to 85% for midsized (more than 50 beds) and large hospitals (more than 300 beds).8 Because of the exponential growth of palliative medicine in recent years, The Joint Commission (TJC) has launched a national initiative to promote hospital palliative care certificate programs.10 Standards for quality are to be based on the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care and the National Quality Forum’s National Framework and Preferred Practices for Palliative and Hospice Care Quality. These guidelines were developed by the National Consensus Panel (NCP) Task Force representing the four coalition organizations (American Academy of Hospice and Palliative Medicine [AAHPM], CAPC, Hospice and Palliative Nurses Association [HPNA], and NHPCO and serve as a blueprint to guide the quality of palliative care.11


Unique ethical challenges are presented to neuroscience nurses by patients with neurological illnesses and impairments. These patients cross the lifespan and frequently experience damage to their personhood that compares with no other illness. Neuroscience nurses must be prepared to care for the young trauma victim who is left with irreversible paralysis or in a persistent vegetative state (PVS), for the middle-aged adult who is newly diagnosed with a progressive neurological disease, and for the elderly person with dementia caused by multi-infarct small strokes. Recovery often does not mean a return to the pretrauma or preillness functional level. These patients may experience complete personality changes or, in other tragic cases, lose the ability to comprehend or communicate information. The ethical questions such as determining patient capacity in decision making or decisions about withholding
or withdrawing treatments are similar in theory to other patients who are seriously ill. However, the context and circumstances surrounding neurologically compromised patients are unique. Before the advent of technology in medical practice, the failure of one or more body systems usually limited life well before cognitive capacity was affected. Now, technology is available to keep patients “alive” indefinitely. This includes patients in a PVS, in which the “organ of reason” is rendered permanently nonfunctional and the patient is unable to make informed consent decisions.

Use of the term ethical and legal is avoided in this chapter to diminish confusion and to avoid the suggestion that ethics and legality are more synonymous than distinctly different. An ethical perspective addresses the moral duties and obligations to provide optimal care for patients and families. A legal perspective speaks to the minimal standards of care set forth in the judicial system to which health care providers must adhere. Simply relying on legal precedents does not necessarily imply that ethically grounded care is being provided. However, many issues, including decisions about withholding or withdrawing treatment or surrogate decision making, require addressing both the ethical dimensions and legal precedents for a comprehensive understanding of the complexity of clinical situations.

A generally recognized phenomenon in health care is the unprecedented development and rapid implementation of new technologies. The appropriate use of technology and its impact on human life are usually secondary, de facto considerations; the lag time between implementation of a new technology and recognition of its broader impact is often the foundation for the associated ethical dilemmas. In addition, sociocultural and economic factors including priorities for allocation of limited health care resources, consensus about self-determination, the cost-effective mandate, and the predominance of managed care environments impact on delivery of care.12 The dynamics involved in this adjustment process are often addressed in the judicial system—the wrong institution to resolve ethical issues. As a result, there has been an uncomfortable uncertainty about the legalities surrounding many ethical issues, leaving the practitioner to sort them out at the bedside. The lack of clarity about how to proceed in ethical dilemmas and how to interpret personal wishes and laws has created further problems within the health care system.



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

  • Autonomy is the act of self-governing, self-determining, or selfdirecting; it involves independence from the will of others, as well as the right to make and follow one’s decisions. It is the right to refuse or choose their treatment (Voluntas aegroti suprema lex). The principle of autonomy affirms the nurse’s duty to respect the decisions of the patient and the family and to assume the role of a patient/family advocate when necessary.

  • Beneficence is the charge to do good. A practitioner should act in the best interest of the patient (Salus aegroti suprema lex).

  • Nonmaleficence is the duty to prevent or avoid doing harm (primum non nocere).

  • Justice is a concept involving the system of consequences that naturally derives from any action or choice.18 It concerns the distribution of scarce health resources and the decision of who gets what treatment. Justice includes fairness, correctness, and impartiality in the application of principles of rightness and of sound judgment. The nurse is obliged to treat patients fairly based on their needs and the situation. It suggests an obligation for nurses to distribute their time, expertise, and resources as fairly as possible among patients assigned to their care.

  • Fidelity is the obligation to be truthful and to keep promises. This principle supports the practice of obtaining informed consent and being honest and genuine in interactions with the patient and family.

  • Dignity is the right of the patient (and the person treating the patient) to be treated with respect.

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 in General

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

Ethical decision making is a dynamic decision-making process requiring reflection, discussion, and evaluation of outcomes. Like decision making in general, it follows the same basic steps. Ethical decisions, as related to health care issues, can be unique in that they involve obligations, responsibilities, duties, rights, and values affecting life-and-death situations. Ethical decision making for the neurological patient often relates to EOL issues. The highly emotional nature of these issues often makes it difficult to separate feelings from facts. It is, therefore, of critical importance for decision makers to separate personal attitudes, beliefs, and feelings from the factual data that are relevant to the particular situation. While conscientious practice informs a nurse’s personal ethical standard and sense of integrity, ethical decision making demands that the nurse remain objective, always aware of both professional and personal ethical standards, but also of emotional reactions.

Many ethical decisions require an interdisciplinary approach to provide a broad, comprehensive perspective of the issues at hand. Members of the interdisciplinary, collaborative team must be knowledgeable about the fundamental principles of ethical decision making and EOL care to guide their analysis of complex cases. The unique input of each team member reflects his or her experience, knowledge, and collaborative role.

Collecting Relevant Data. The database, related to the medical diagnosis and prognosis, provides information necessary for the nurse’s ethical decision-making process. Likewise, information collected by the nurse, as derived from periodic neurological examinations, preferences expressed by the patient or family, and other sources, provides a current and updated database for ethical decision making. Data collected should include diagnosis, prognosis, patient goals, and preferences for treatment. In cases of coma, a diagnosis detailing the type of brain injury and the likelihood of functional and/or cognitive recovery is important.

The most important information about goals of care comes from the patient if he or she is an adult and is mentally capable of making decisions. Consulting the patient in this regard recognizes the patient’s right to autonomy and to define QOL for himself or herself. If the patient decides to let family make important decisions, or is incapable as a result of coma, cognitive deficits, or other causes, then information regarding treatment preferences may be found in a living will or the expression of wishes made to the family or significant other while the patient was well. A surrogate decision maker may be necessary to represent the patient’s wishes. The family’s goals of care are also explored and established. Other data collected include information on state laws, hospital policies, and professional codes related to the particular situation. In some situations, it may be necessary to seek advice from the institutional ethics committee or hospital attorney.

Analyzing Data. Once data are collected, relevant data are analyzed. Using the moral principles of autonomy, beneficence, justice, and fidelity, consider the question, “What are the duties, rights, and responsibilities of all persons involved?” Proposing Alternative Solutions. Considering the diagnosis, evidence-based practice, prognosis, goals of care, laws, policies, and other relevant data, alternative actions are then identified.

Identifying the Risk-Benefit Ratio of Each Alternative. The risks and benefits of each alternative action are weighed and considered on the basis of treatment preferences, potential outcomes (both desired and consequential), laws, and policies.

Selecting the Best Alternative Based on Established Criteria. Finally, an alternative or action is selected on the basis of goals of care, acceptable ethical standards, laws, and policies, along with acceptance of the consequences and benefits of that action. To illustrate this point, terminally ill patients who determine that invasive treatment options (i.e., surgery, chemotherapy, radiation) carry more of a risk of harm than potential benefit may decide to shift their goals of care from curative or life-prolonging measures to comfort measures.

Physicians are not morally obliged to fulfill patients’ requests for actions that they consider ethically objectionable, nor are they obliged to provide treatments that are not beneficial. Physicians have the right to be removed from the care of such patients, although they also have an obligation to arrange for another physician to care for the patient.20 When clinicians are faced with difficult decisions or there is a lack of consensus about the best course of action or treatment for a patient, a consultation may be requested from the institutional ethics committee. The purpose of an ethics committee is to review cases impartially and make recommendations. A statement, often written by the chairperson of the group, summarizes the recommendations of the committee as it relates to the best interest of the patient within the context of the situation. The criteria of TJC now require a formal mechanism to support ethical decision making.

Process of Ethical Decision Making

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


Over the years, the paradigm of preferred models of care provided by health care teams have evolved, ranging from multidisciplinary to interdisciplinary teams (IDTs). The multidisciplinary team approach is a group of individuals who work independently within their specialty, whereas IDTs blend the talents of specialized professionals together. Though palliative care can be delivered in a variety of team structures (i.e., solo practitioners to core and extended teams), teams should be tailored to meet the individualized, comprehensive needs of the patient, family, and caregivers.23, 24 The fundamental goal of palliative care teams (PCTs) is to achieve the following objectives: to provide an accurate and speedy assessment; to coordinate effective, integrated treatment and care; to relay efficient communication with the patient and the family, with other professionals, institutions, and within the team itself; and to audit the team’s activities and outcomes.24

CAPC has delineated clear scopes of practice and roles for IDT members, including physicians, advanced practice registered nurses (APRNs), social workers, and other key members. “Palliative care clinicians include some or all of the following—physicians, nurses, social workers, chaplains, psychologists, and pharmacists.25 All palliative care clinicians are certified in palliative care (or have equivalent training) and are credentialed to provide palliative care services. However, nonpalliative specialists (e.g., health care professionals from other specialties) are equally important and vital team members for patients receiving EOL care.

The PCT collectively serves to fulfill the following responsibilities: optimize symptom control and functional status when appropriate; promote the highest QOL for patient and family; educate patients and family to promote understanding of the underlying disease and illness trajectory; process expected future course of the illness; establish an environment that is comforting and healing; plan for discharge to the appropriate level of care in a timely manner; assist actively dying patients and their families in preparing for and managing life closure; serve as educators and mentors for staff; and to promote a system of care that fosters timely access to palliative care services.

The process of providing palliative care services includes initial and subsequent assessments which are carried out through patient and family interviews; review of medical records; discussion with other providers; physical examination; and review of laboratory, diagnostic tests, and procedures. Assessment generally includes documentation of the disease status/treatment history; functional status/expected prognosis; comorbid medical disorders; and physical, psychological, and spiritual symptoms. Importantly, advance care planning preferences/surrogate decision maker(s) should be identified as key initial and ongoing assessments that are reviewed on a regular basis.25

Advanced Practice Registered Nurses

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.

  • Designers of innovative practices for EOL care in a variety of settings

  • Educators of and consultants to other clinicians, medical residents, nursing students, and other providers

  • Researchers and contributors to the professional literature and body of knowledge

  • Administrators within health care systems, institutions, and clinical education programs29

Social Workers

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.

  • Why are you meeting?

    • Clarify conference goals with health care team members. What do you hope to accomplish? If other subspecialty physicians are involved, disagreements about patient care should be resolved before the meeting, not during it.

  • Where?

    • Private room away from distracting noises with seats available for all attending

  • Who?

    • Patient (if capable of participating)

    • Legal decision maker/health care power of attorney

    • Family members and social support

    • Hospital chaplain or family spiritual leader

    • Key health care professionals

  • Introduction and relationship building

    • Physician, nurse, and social worker are introduced to the family or representatives of the family, and the family or representatives of the family introduced to the health care providers.

    • Review goals of meeting; clarify if specific decisions need to be made.

    • Establish ground rules: each person will have a chance to ask questions and express views with no interruption. Establish a legal decision maker. Describe importance of supportive care.

  • Determine what the patient/family already knows

    • Ask the family or family representatives to describe the patient as a person to get a sense of what kind of individual he or she is, his or her values, and any health care preferences

      (this builds trust and provides a context for discussion that is patient centered).

    • Ask the patient or family representatives to tell you their understanding of the current medical condition.

    • Ask each family member to speak.

    • Ask about the past 1 to 6 months—what has changed in the patient’s functional ability, weight, and QOL?

  • Review medical status

    • Review what has happened and what is happening to the patient. Include prognosis and treatment options; this includes the best and worse outcome (often this information is not conveyed; to know that their loved one would live in a nursing home is NOT an acceptable option for many).

    • Discuss issues in a way that is meaningful to the patient/family; acknowledge that prognosis is (often) uncertain; avoid euphemisms for the word dying.

    • For decisions to withdraw aggressive medical interventions, reinforce that while medical treatments may stop, caring for the patient will continue; describe what the patient’s natural death might be like as a result of discontinuing aggressive ineffective treatment and allowing a natural death.

    • Ask the patient and each family member, in turn, if they have any questions about current status, plan, and prognosis.

    • Defer discussion of decision making until the next step.

    • Respond to emotional reactions.

  • Family discussion with a patient able to make a decision

    • Ask patient, “What decision(s) are you considering?”

    • Ask each family member, “Do you have questions or concerns about the treatment plan? How can I (or other health care professionals) support the patient?”

  • Family discussion with a patient incapable of making a decision

    • Ask each family member in turn, “What do you believe the patient would choose if he or she could speak for himself or herself?”

    • Ask each family member, “What do you think should be done?”

    • Ask the family if they would like you to leave the room to let them discuss alone.

    • If there is consensus, go to item 10; if no consensus, go to item 9.

  • When there is no consensus

    • Restate the goal: “What would the patient say if he or she could speak?”

    • Use time as an ally: schedule a follow-up conference the next day.

    • Try further discussion: “What values are your decisions based upon? How will the decision affect you and other family members?”

    • Identify other resources: minister/priest; other physicians; ethics committee to assist in making a decision.

  • Wrap-up

Jul 14, 2016 | Posted by in NURSING | Comments Off on Ethical Perspectives and End-of-Life Care

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