End-of-Life Care (with Ethical Issues) Nursing CE Course

2.0 ANCC Contact Hours AACN Category

Syllabus

Upon completion of this module, the learner will be able to:

  • Define palliative care, end of life care, and hospice care, and list the four domains of care at the end-of-life.
  • Define ethics as a discipline and describe the ethical principles of autonomy, beneficence, nonmaleficence, justice, and fidelity as pertaining to the end of life.
  • Identify the American Nurses Association Code of Ethics, and the CCMC Code of Professional Conduct, and their application to end-of-life care.
  • Describe the aspects of advance care planning and advance directives.
  • Describe common ethical dilemmas at the end of life and list strategies to promote comprehensive, compassionate, and morally sound care for patients at the end-of-life.

Background

The National Institute on Aging (2017) defines end-of-life (EOL) care as the support and medical care given during the time surrounding death. The term embodies the delivery of care within four domains: physical comfort, mental and emotional needs, spiritual issues, and practical tasks. The ultimate goal of EOL care is to manage symptoms and control pain so the patient is as comfortable as possible throughout the dying process (NIA, 2017). EOL care is interconnected with palliative care and hospice care, which are medical specialties that strive to offer compassionate care to patients with life-limiting illnesses, but have key distinctions. Palliative care serves as the foundation of comprehensive, person-centered, family-oriented, and evidence-based EOL care. It is always a component of hospice care, but is not reserved only for the EOL, as ideally it should be employed throughout the active treatment of an illness. Palliative care focuses primarily on improving the quality of life and quality of care for patients with life-threatening or life-limiting illness and their families by reducing suffering, alleviating pain, and managing any other distressing symptoms. Palliative care often aids in encouraging, promoting, and facilitating communication about goals of care and engaging in EOL planning. Hospice care is within the continuum of palliative care, but is the most intensive, refined form of palliative care; it is implemented only during the final weeks and months of life. Hospice denotes the disease is incurable, acknowledges that attempts to slow down disease progression have failed, and accepts that time is limited. It is reserved for terminally ill patients with a life expectancy no greater than six months duration. Death is the expected outcome of hospice care and the preeminent goals focus on enhancing quality of life, providing comfort, and alleviating any suffering for both patients and their families (Berger, Shuster, & Von Roenn, 2014).  

Providing optimal care to patients at the EOL requires a keen awareness and understanding of the principles that underlie medical ethics, including autonomy, beneficence, nonmaleficence, justice, and fidelity.  With growing attention on medical futility, the withdrawal or withholding of medical interventions, and aid-in-dying, healthcare professionals must not only be well-informed on the ethical and legal ramifications surrounding these topics, but must also examine their own beliefs and personal biases to ensure care is delivered without prejudice (American Nurses Association [ANA], 2016). While physicians and nurses are central to good patient care and medical decision-making at the EOL, other healthcare personnel such as mental health professionals, social workers, case managers, and care coordinators are additionally fundamental during this stage of transition (Commission for Case Manager Certification [CCMC], 2019). By remaining attuned to the potential ethical dilemmas that may arise and being equipped with strategies and interventions aimed at avoiding conflict, the healthcare professional serves an instrumental role in safeguarding the delivery of unbiased, morally sound EOL care that upholds and respects the patient’s wishes (ANA, 2016).

The Four Domains of End-of-Life Care

The NIA (2017) describes the four domains of care needed at the end-of-life, which include physical comfort, mental and emotional needs, spiritual issues, and practical tasks. Providing physical comfort primarily focuses on managing pain and other physically distressing symptoms, such as digestive discomfort, respiratory distress, and skin irritation. Pain is one of the most important symptoms at the EOL and has a major impact on quality of life (Praveen, Chowdary, Kumar, & Aanandhi, 2018). The World Health Organization (WHO, 2018) reports that 80% of patients with AIDS or cancer, and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate to severe pain at the end of their lives.  Evidence demonstrates that pain is undertreated in the majority of settings, contributing significantly to patient discomfort and suffering at the EOL (Fink, Gates, & Montgomery, 2015).  Unresolved pain is of paramount concern to the majority of individuals who are faced with death.  Severe and unresolved pain may hasten death by increasing physiological stress, decreasing immunity, and decreasing mobility which in turn can increase the workload of the heart and lungs, increasing the possibility of pneumonia and/or thromboembolism. Most pain at the EOL is managed with oral, topical, or intravenous medications, as well as through nonpharmacological modalities such as repositioning, skin care, application of cold or warm packs, and massage. However, fear surrounding the use of narcotics and opioids still remains a significant barrier to adequate pain management (Paice, 2015). 

Managing mental and emotional needs is another core responsibility when caring for those nearing the EOL. As critical as managing physical pain, it is equally important to treat emotional pain and mental anguish. Patients who are alert may endure fear, anxiety, depression, sadness, regret, or remorse when nearing the EOL (Paice, Battista, Drick, & Schreiner, 2018). Many patients bear an overabundance of emotions and may cycle through emotional ups and downs as time passes. Some may have some specific fears or concerns, such as being alone at the very end or leaving family members behind, whereas others may simply fear the unknown. Encouraging conversations about feelings may be beneficial, but when symptoms of depression, anxiety, or panic are severe, pharmacologic agents may become necessary interventions (Wachterman et al., 2016). Loved ones, friends, and family members grieve in their own ways and may endure varying stages of grief during the dying process. When family and friends do not know how to help or what to say, they may stop visiting the patient or withdraw (Kellas, Castle, Johnson, & Cohen, 2017). This can be particularly challenging for the patient who may feel isolated, abandoned, and lonely.  Simple gestures of physical contact such as holding hands, light touch, or gentle massage can help promote feelings of connection and can be very soothing for the patient.  Often, just being present is enough to fill an empty void and alleviate mental anguish and fears of dying alone (NIA, 2017).

Spiritual needs at the end-of-life can vary greatly and may include finding meaning or purpose in one’s life and finding peace by ending disagreements or resolving unsettled issues with others. Many are able to find solace in their faith during the dying process, and openly welcome visits from ministers or chaplains (Olman, Willems, & Leget, 2016). However, some continue to struggle with their spiritual beliefs and faith at the EOL, and interventions must be tailored to meet their needs. Sharing positive memories is a strategy which may help patients come to peace before death, as it promotes connectedness and comfort (NIA, 2017).  

The practical tasks that must be performed during the EOL process should not be overlooked because they may be a tremendous source of stress and worry for the patient and caregiver. Everyday tasks such as taking care of a patient’s pet, keeping up with household bills and chores, or finalizing personal affairs are crucial. The patient may be fearful about who will care for their children or beloved pet in the future, and therefore, making proper arrangements can alleviate fear and induce peace and comfort (NIA, 2017).

Ethical Principles

Ethics is a discipline studied in nearly all professions and encompasses standards outlining what is right or wrong, and what is good or bad. Ethics are general rules of conduct delineating behavior as guided by ethical principles. Ethics have nothing to do with emotions or feelings and are not laws or legally binding. Instead they are standards of conduct that define the essentials of honorable behavior (ANA, 2015). Issues in medical ethics often involve life and death and the various disciplines offer ethical standards applicable to different groups of health professionals. While the ethical principles underlying medical ethics at the EOL have universal definitions as outlined in Table 1, the interpretation of each principle when applied to EOL care can uncover variations as determined by the governing body (Markose, Kirshnan, & Ramesh, 2016).


Table 1. Ethical principles underlying medical ethics at EOL

Autonomy

The patient’s right to self-determination.

Beneficence

Doing what is good or beneficial for the patient.

Nonmaleficence

Avoidance of infliction of intentional harm to the patient.

Justice

Fairness in the delivery of healthcare.

Fidelity

Truthfulness and faithfulness in delivering healthcare.

(Markose et al., 2016)

The American Medical Association (AMA, 2016) Code of Medical Ethics has articulated the values to which physicians commit themselves as members of the medical profession. The medical profession has long subscribed to a body of ethical statements developed primarily for the benefit of the patient, with the first edition of standards written in 1847. Ethics in the field of nursing date back to the 1800s when Florence Nightingale developed a pledge to practice faithfully, engage in purity, and elevate the standards of the nursing profession by committing herself to the welfare of patients. This became the basis for the current code of nursing ethics published by the ANA in 2001 and is comprised of nine provisions that govern how nurses should behave. The code has undergone revision several times through expert committee review but is still considered the gold standard for nursing ethical practice (ANA, 2015). In addition, the ANA has devised a position statement outlining nurses’ roles and responsibilities in providing care and support at the end of life. Nurses’ roles and responsibilities for care at the EOL are grounded in the fundamentals of practice and clinical ethics (ANA, 2016). 


Table 2. American Nurses’ Association Code of Ethics

Provision

Application to EOL care

1:  The nurse practices with compassion and respect for the inherent dignity, worth, and unique attributes of every person.

Respect for human dignity, provide comprehensive and compassionate EOL care to patients and their families. Respect for patient autonomy is an important dimension of clinical decision-making at EOL. 

2: The nurse’s primary commitment is to the patient, whether an individual, family, group, community, or population.

Nurses are responsible for establishing decision-making processes that reflect physiologic realities, patient preferences, and the recognition of what may or may not be accomplished clinically. Establishing goals of care for an individual patient at that immediate time may provide a framework for a discussion about what care should be provided. Understand the patient’s values, goals, and wishes; discuss the goals of care and advocate for the patient to ensure preferences are upheld and maintained. Recognize that family is whomever the patient says it is.

3:  The nurse promotes, advocates for, and protects the rights, health, and safety of the patient.

Protect the patient’s rights and safety above all else; maintain privacy and confidentiality through death. Have discussions about death and collaborate with multidisciplinary care teams to ensure patients and families have current and accurate information about the possibility or probability of impending death.

4:  The nurse has authority, accountability, and responsibility for nursing practice; makes decisions and takes action consistent with the obligation to promote health and to provide optimal care.

Provide evidence-based nursing care to patients during the EOL, including basic skills in recognizing and managing symptoms common during the dying process. Remain accountable for all actions.

5:  The nurse owes the same duties to self as to others, including the responsibility to promote health and safety, preserve wholeness of character and integrity, maintain competence, and continue personal and professional growth.

Act with integrity. Examine internal biases and feelings on death, dying, and EOL care. Consider ethical dilemmas and address personal feelings to remain objective when caring for patients. Promote self-respect, professional growth and competence to ensure quality care is consistently delivered.

6:   The nurse, through individual and collective effort, establishes, maintains, and improves the ethical environment of the work setting and conditions of employment that are conducive to safe, quality health care.

Maintain, improve and promote work environments in which the standards for excellent care extend through the patient’s death and into post-death care for families. Remedy any workplace issues that are not optimal for providing quality care.

7:  The nurse, in all roles and settings, advances the profession through research and scholarly inquiry, professional standards development, and the generation of both nursing and health policy.

Advance the profession by identifying areas for improvement in EOL care. Strive to attain a standard of primary palliative care so all health care providers have basic knowledge of palliative nursing to improve the care of patients and families. Increase the integration of evidence-based care across the dimensions of disease continuum and develop best practices to measure the quality and effectiveness of interdisciplinary care patients and families receive regarding EOL decision-making and treatments.

8: The nurse collaborates with other health professionals and the public to protect human rights, promote health diplomacy, and reduce health disparities.

Collaborate with other members of the health care team to ensure optimal symptom management and to provide support for the patient and family. This includes working closely with physicians, social workers, case managers, and other professionals to ensure patient needs are optimally met. Collaboration may be within the employing institution, public, and/or community settings. Work toward a standard of palliative care being available to all patients and families from the time of diagnosis of a serious illness or an injury and extending through death.

9: The profession of nursing, collectively through its professional organizations, must articulate nursing values, maintain the integrity of the profession, and integrate principles of social justice into nursing and health policy.

Behave professionally, performing civic duty, and uphold the integrity of the field of nursing even in the face of ethical dilemmas or complex issues that arise at the EOL. Perform in a way that brings honor to the field and does not sacrifice the most important role of the nurse-meeting the needs of each patient.

(ANA, 2015; ANA, 2016)

Certified case managers (CCMs) often confront ethical dilemmas and must abide by the Code of Conduct and the professional code of ethics for their specific professional discipline for guidance and support in the resolution of these conflicts. Although nurses are primarily responsible for the medical care of patients at the EOL, case managers are often called upon to help during these times.  The Code of Professional Conduct from the CCMC (2015b) provides a framework for ethical, high-quality care as governed by eight principles of professional conduct. These principles and their application to end-of-life care are outlined in Table 3.


Table 3. CCMC Principles of Professional Conduct for Case Managers

Principle

Application to EOL care

1: CCM will place the public interest above their own at all times

Assessment of the client’s current functioning and individual needs. Take the lead to help clients, family and caregivers have earlier and better conversations about palliative care and EOL, as a means of 

advocacy.

2: CCM will respect the rights and inherent dignity of all of their clients.

Respect the client’s right to self-determination/autonomy at the EOL. 

Preserve the client’s dignity throughout the dying process.

3: CCM will always maintain objectivity in their relationships with clients.

Examine and recognize internal biases or conflicts to remain objective in viewpoints on dying and ethical dilemmas at EOL.

4: CCM will act with integrity and fidelity with clients and others.

Uphold principles of beneficence and compassion. Desire to do good and help ease the transition during the EOL for client and their loved ones.

5: CCM will maintain their competency at a level that ensures their clients will receive the highest quality of service.

Maintain awareness of the ethical principles, standards of practice, and laws at the local, state and federal level that help resolve issues at the EOL. The CCM will remain knowledgeable about the laws regarding death and be skilled with care coordination and resources to refer family for bereavement.

6: CCM will obey and honor the integrity of the CCM designation and adhere to the requirements for its use.

The code provides a foundation and it is the responsibility of the CCM to honor and adhere to the requirements. The CCM follows the integrity of the code and is a role model for nursing and other staff regarding EOL care.

7: CCM will obey all laws and regulations.

Maintain currency with all laws and regulations and assure compliance. CCMs should remain current with laws so they can take an active role in the policies that support optimal care at the EOL.

8: CCM will help maintain the integrity of the Code, by responding to requests for public comments to practice review and revise the code, thus helping ensure its consistency with current practice.

The code sets a baseline expectation for the public to be aware of standards. It also allows for feedback and for revisions of the code, thus ensuring its consistency with current practice. CCMs should encourage comments and feedback in order to help improve the code and practice relating to the EOL process.

(CCMC, 2015a; CCMC 2015b)

Advance Care Planning (ACP) 

Confronting the reality of a patient’s declining condition and impending death is typically a difficult topic for patients and families. Choices about the most appropriate health care interventions at the EOL address whether specific treatments are ultimately likely to benefit the patient and if they are congruent with the patient’s wishes (ANA, 2016). All individuals approaching the EOL have a right to an assessment and discussion regarding their wishes and preferences at a time when they are emotionally, physically, and cognitively proficient to make these decisions. Advance directives should be the start of the conversation, not the end. Decision-making for the EOL should occur over years rather than just in the days or minutes prior to imminent death. 

 ACP is the process by which a discussion occurs between the patient and their care providers, irrespective of discipline, concerning the patient’s, wishes, values, goals, and preferences for care or treatment in the future (NIA, 2017). The American Cancer Society (ACS, 2019) defines advance directives as the expression of the patient’s preferences for medical care that come into play when the person is unable to speak for himself. They may also include identification of a surrogate, or someone who will represent the patient’s preferences in decision-making. The Federal Patient Self-Determination Act (PSDA) of 1990 mandates that all Medicaid and Medicare providers inform adult patients of their right to participate in and direct their own healthcare decisions, accept or refuse treatment, prepare an advance directive (living will, power of attorney for healthcare), and be informed of healthcare facilities’ policies on these rights (ACS, 2019).  The individual’s right to freely decide their own EOL care and treatments must be respected ethically with regards to the use of advanced treatments and disease prognosis (Kamik & Kanekar, 2016).

The most common types of advance directives include the living will, the durable power of attorney for health care (or medical power of attorney), do not resuscitate/do not attempt resuscitation orders, and medical/physician orders for life-sustaining therapy (MOLST, POLST) (ANA, 2016). The AMA (2016) Code of Medical Ethics states that physicians and care teams have a responsibility to help patients define their goals for care and to respect patients' preferences, support patient self-determination, facilitate decision making, and promote better care at the EOL.  The AMA views ACP as valuable for everyone, regardless of age or health status, however they strongly encourage that ACP is undertaken in the context of an anticipated deterioration in the patient’s condition. Planning in advance for decisions about care in the event of a life-threatening illness or injury gives individuals the opportunity to reflect on and express the values they want to have govern their care, to articulate the factors that are important to them for quality of life, and to make clear any preferences they have with respect to specific interventions. Ultimately, ACP strives to safeguard care at the EOL and ensure it is congruent with patient wishes and values. and case managers are important resources as they are well-positioned and professionally equipped to engage in meaningful ACP discussions to enhance understanding and help guide decision-making. Notably, these discussions provide individuals the opportunity to identify who they would want to make decisions for them should they not have decision-making capacity (CCMC, 2019).  

  While preparing for EOL and making decisions about treatment and preferences can be very challenging and distressing for many patients and families, the consequences of failing to plan for these events can be even more devastating. According to the National Cancer Institute (NCI, 2019), those without predetermined plans for the transition to EOL often endure increased psychological distress and are routinely subjected to medical treatments that are incongruent with their personal preferences. In addition, families and caregivers experience heightened emotional distress accompanying the decision-making process and endure a more difficult bereavement period.  The cost of care and utilization of burdensome and expensive healthcare services and resources offering minimal therapeutic benefit is also heightened as a result. Each state has its own definitions and practices regarding how individual rights to determine one’s own healthcare treatment are guaranteed (NCI, 2019).

Medical Futility

Medical futility remains a clinically relevant and controversial ethical debate surrounding EOL care. While the main controversy centers on a lack of consensus regarding a universal definition of medical futility, it is broadly used to describe clinical interventions that are unlikely to produce any significant benefit for the patient (Armstrong, Poku, & Burkle, 2014). Medical futility in relation to EOL care occurs when the likelihood that an intervention will benefit the patient is exceedingly poor and there has been a failure to achieve goals in prolonging life and improving quality of life. There is often an associated disproportionate harm-benefit ratio and clinical interventions are viewed as imposing heavy costs or carrying the potential to inflict harm (Aghabarary & Nayeri, 2016). While research supports that most healthcare professionals believe futile treatments should not be provided during the EOL, consensus on what exactly is considered futile is not static when applied to complex patient situations. The concept instead must be defined individually and based on the unique condition of each patient. Therefore, it remains one of the most common ethical dilemmas that present during the end of one’s disease trajectory or illness (Armstrong et al., 2014). 

The AMA (2016) positions that physicians have no obligation to offer treatments that do not benefit patients, however determining which interventions are beneficial to a patient can be difficult, especially in cases where the patient or surrogate see an intervention as beneficial while the physician does not. Although the ethical requirement to respect patient autonomy entitles a patient to choose from among medically acceptable treatment options (or reject all options), it does not entitle patients to receive any treatment they ask for. Therefore, the obligations of physicians and other licensed medical providers should be limited to offering treatments that are consistent with professional standards of care and that are projected to bestow clinically significant benefit to the patient at the EOL (AMA, 2016).

Withdrawing or Withholding Medical Interventions

According to the AMA (2016), a patient who is competent with decision-making capacity has the right to decline any medical intervention or request that an intervention be stopped, even when that decision is expected to lead to death.  This is a prime example of a patient exercising their right to autonomy. The ANA (2017) position statement on nutrition and hydration at the EOL identifies comparable views regarding the acceptance or refusal of clinically appropriate food and fluids, whether delivered by oral or artificial means. Patient (or surrogate) decisions must be respected, provided the decision is based on accurate information and represents patient preferences. In the event that a patient lacks capacity, the patient’s surrogate may decline an intervention on the patient’s behalf or ask that an intervention is stopped (ANA, 2017). When an intervention is no longer helpful in achieving the patient’s goals for care or desired quality of life, it is ethically appropriate for physicians to withdraw that care (AMA, 2016). The AMA (2016) and the ANA (2016) mutually agree that there is no ethical, moral, or legal difference between withholding care (never starting it) or withdrawing care (stopping it). Further, decisions about accepting or forgoing nutrition and hydration should be honored, including those decisions about artificially delivered nutrition as well as the decision to voluntarily stop eating and drinking as a means of hastening death (ANA, 2017). The ANA urges providers to avoid initiating a therapy they are not willing to discontinue. As noted earlier, it is critical that the patient’s care team collaborate to elicit goals of care and preferences regarding life-sustaining interventions early in the course of illness to avoid difficult ethical dilemmas at the EOL (ANA, 2016).

Medical Aid in Dying  

The topic of medical aid in dying continues to gain attention within the media as more states pass laws legalizing this practice. It is often confused with euthanasia or physician-assisted suicide, but there is a key distinction. Physician-assisted suicide and euthanasia are acts in which the patient dies at the hand of a physician or other medical provider. The physician performs the act at the patient’s request. Medical aid in dying allows terminally ill adults to request and receive a prescription for a medication that they may choose to administer themselves, as a means of bringing about a peaceful death (ANA, 2019). There are specific qualifications that the patient must meet, including being mentally capable, willing, and able to self-administer the medication. The patient must also have a prognosis compatible with those entering hospice care, which is six months or less to live. Currently, there are ten jurisdictions in the United States that authorize medical aid in dying, which include California, Colorado, Montana, Oregon, Vermont, Washington state, Hawaii, New Jersey, Maine and Washington, D.C. (Compassion & Choices, 2019). 

Due to the heightened media attention, the ANA (2019) put forth a position statement to provide guidance for nurses on ethical decision-making in response to a patient’s request for medical aid in dying. Nurses are ethically prohibited from administering medical aid in dying medication. Legally and ethically, nurses may not administer a medication with the intention to induce a patient’s death. Therefore, the ANA urges nurses to ensure their actions are aligned with the ethical commitment to support patients in clarifying their goals of care and making fully informed decisions. However, the position statement also reminds nurses that they should never “abandon or refuse to provide comfort and safety measures to the patient” who has chosen medical aid in dying (ANA, 2019, p.2).

Moral Distress in Nursing

Nurses are frequently in positions to provide guidance for patients and families confronting difficult decisions and accepting death. The hallmark of quality EOL care is a respect for patient self-determination through the provision of nonjudgmental support for their EOL preferences and values.  Nurses are obligated to provide care that promotes comfort while preventing and alleviating pain and other distressing symptoms. The ANA (2016) compels nurses to make every effort possible to ensure aggressive symptom management at the EOL; the code of ethics also denotes that it is never ethically permissible for a nurse to act by omission or administer a medication with the intention of ending a patient’s life (ANA 2015; ANA, 2016). This has often been the source of moral distress among nurses who administer the last dose of morphine to a dying patient who subsequently stops breathing. The code of ethics attempts to remedy the nurse’s harbored emotional distress by highlighting the action as taken to aggressively control pain for the dying patient, but many nurses struggle with this topic regardless. There are times when the preferences of the family are in contrast to the preferences of the patient. In these cases, the nurse’s primary responsibility is to provide care and support to the patient and to respect the patient’s autonomy while continuing to support the family as they struggle to adjust to the impending reality of the patient’s death. 

Implications for Practice 

Despite strong evidence that patients benefit from early integration of EOL discussions and consistent evidence that they want to talk about it, it is not routinely addressed and is too often still the elephant in the room. Prognosis affects patients’ choices about CPR and additional life-sustaining measures at the EOL when they are properly informed about their diagnosis (Hawley, 2017).  EOL discussions do not cause emotional harm to patients and their families. In fact, when the topic of EOL and options for future care are discussed, bereaved families report higher satisfaction with communication from the care team and increased comfort of their loved one. They also report a better understanding of what to expect as their family member died (Hughes, Noyes, Eckley, & Pritchard, 2019). Patients who have EOL discussions with their physicians and care team are more likely to accept their diagnosis as terminal, have an advance directive, complete a DNR order, and prefer medical treatment focused on relieving pain over extending life with futile interventions. They are more likely to choose hospice care and die at home. Patients are less likely to receive mechanical ventilation, have a feeding tube, undergo resuscitation efforts, or be admitted to an intensive care unit. (Wachterman et al., 2016). At the end of life, the quality of life decreases with additional aggressive interventions whereas the quality of life increases with hospice care. Choosing hospice is consistently linked to improved quality of life at the EOL, greater symptom control, increased emotional support, and more comfort through the dying process (Hawley, 2017). Hospice is also associated with decreased major depression in bereaved caregivers. Caregivers of patients who received aggressive care in the last weeks of life were more likely to develop major depressive disorder, experience regret, feel unprepared for the patient’s death, and report poorer quality of life (Hughes et al., 2019). 

Patient’s wishes at the EOL has been studied extensively. While data mostly centers on cancer, there are other illnesses represented. As a whole, patients want realistic, truthful information from their care team. They want to know what will happen, which is equally as important to them as how much remaining time they are expected to have. How they are told is equally as important as what they are told. Patients strive for hope, optimism, and prefer discussions where the emphasis is on what can be done, such as emotional support, care, dignity, pain control, and non-abandonment. Hope is not giving patients half-truths, concealing information, or only reporting positives. Hope can be stimulated by providing patients with a sense of receiving good care and that all the right things are being done or have been done, ensuring they will not be abandoned, offering completeness of information, and providing them with choices to uphold their autonomy (Kellas et al., 2017; Olsman, Willems, & Leget, 2016)

Take home points

  • The ultimate goal of EOL care is to manage symptoms and control pain to ensure the patient is as comfortable as possible throughout the dying process.
  • Best practice in advance care planning includes having these discussions early in the disease progress and enhancing communication to assist patients in completing advance directives when they are psychologically, emotionally, and physically competent to make these decisions.
  • Ethics are standards of conduct in place to help guide difficult decision making and moral dilemmas which present during the EOL.
  • Communicating and collaborating with professional colleagues greatly improves the experience and outcome for patients and families at the EOL.

References


Aghabarary, M., & Nayeri, N. D. (2016). Medical futility and its challenges: A 

review study. J Med Ethics Hist Med, 9, 1-13

American Cancer Society. (2019). Advance directives. Retrieved from 

https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/advance-directives/what-is-an-advance-health-care-directive.html

American Medical Association. (2016).  Code of medical ethics: Caring for 

patients at the end of life. Retrieved from https://www.ama-assn.org/delivering-care/ethics/code-medical-ethics-caring-patients-end-life

American Nurses Association. (2015). Code of ethics for nurses with interpretive 

statements. Retrieved from https://www.nursingworld.org/practice-policy/nursing-excellence/ethics/code-of-ethics-for-nurses/coe-view-only/

American Nurses Association. (2016). Nurses’ role and responsibilities in 

providing care and support at the end of life. Retrieved from https://www.nursingworld.org/~4af078/globalassets/docs/ana/ethics/endoflife-positionstatement.pdf

American Nurses Association. (2017). Nutrition and hydration at the end of life. 

Retrieved from https://www.nursingworld.org/~4af0ed/globalassets/docs/ana/ethics/ps_nutrition-and-hydration-at-the-end-of-life_2017june7.pdf

American Nurses Association. (2019). The nurse’s role when a patient requests 

medical aid in dying. Retrieved from https://www.nursingworld.org/~49e869/globalassets/practiceandpolicy/nursing-excellence/ana-position-statements/social-causes-and-health-care/the-nurses-role-when-a-patient-requests-medical-aid-in-dying-web-format.pdf

Armstrong, M. H., Poku, J. K., & Burkle, C. M. (2014). Medical futility and 

nonbeneficial interventions: An algorithm to aid clinicians. Mayo Clinic Proceedings, 89(12), 1599-1607. doi: 10.1016/j.mayocp.2014.08.017

Berger, A. M., Shuster, J. L., & Von Roenn, J. M. (2014). Principles and practice of 

palliative care and supportive oncology. (4th ed.). Philadelphia, PA: Lippincott Williams & Wilkins

Commission for Case Manager Certification. (2015a). Code of Professional 

Conduct for case managers with standards, rules, procedures, and penalties. Retrieved from 

https://ccmcertification.org/sites/default/files/docs/2017/code_of_professional_conduct.pdf

Commission for Case Manager Certification. (2015b). Foundational principles: 

Newly reviewed Code of Professional Conduct provides a framework for ethical, high-quality care. Retrieved from https://ccmcertification.org/sites/default/files/issue_brief_pdfs/23_-_updated_code_of_conduct.pdf 

Commission for Case Manager Certification. (2019). When everything is rarely 

enough: Palliative care and the power of asking the right questions. Retrieved from https://ccmcertification.org/sites/default/files/issue_brief_pdfs/ccmc-april-ib-web.v2_1.pdf

Compassion & Choices. (2019). Understanding medical aid in dying. Retrieved 

from https://compassionandchoices.org/end-of-life-planning/learn/understanding-medical-aid-dying/

Fink, R., Gates, R., & Montgomery, R. (2015). Pain assessment. In B.R. Ferrell, N. 

Coyle, & J. Paice (Eds.), Oxford textbook of Palliative Nursing, 4th edition (Chapter 6). New York, NY: Oxford University Press.

Hawley, P. (2017). Barriers to access to palliative care. Palliative Care, 10, 1-6. doi: 

10.1177/117/8224216688887

Hughes, N. M., Noyes, J., Eckley, L., & Pritchard, T. (2019). What do patients and 

family-caregivers value from hospice care? A systematic mixed studies review. BMC Palliative Care, 18(18), 1-13. doi: 10.1186/s12904-019-0401-1

Kamik, S., & Kanekar, A. (2016). Ethical issues surrounding end-of-life care: A 

narrative review. Healthcare (Basel), 4(2), 24-30. doi: 10.3390/healthcare4020024

Kellas, J. K., Castle, K. M., Johnson, A., & Cohen, M. Z. (2017). Communicatively 

constructing the bright and dark sides of hope: Family caregivers’ experiences during end of life cancer care. Behav Sci (Basel), 7(2), 33-45. doi: 10.3390/bs7020033

Markose, A., Kirshnan, R., & Ramesh, M. (2016). Medical ethics. J Pharm Bioallied 

Sci, 8 (suppl 1), s1-s4. doi: 10.4103/0975-7406.191934

National Cancer Institute. (2019). Planning the transition to end-of-life care in 

advanced cancer (PDQ®)-health professional version. Retrieved from https://www.cancer.gov/about-cancer/advanced-cancer/planning/end-of-life-hp-pdq

National Institute on Aging. (2017). Providing care and comfort at the end of life. 

Retrieved from https://www.nia.nih.gov/health/providing-comfort-end-life

Olsman, E., Willems, D., & Leget, C. (2016). Solicitude: Balancing compassion and 

empowerment in a relational ethics of hope--an empirical-ethical study in palliative care. Med Health Care Philos, 19, 11-20. doi: 10.1007/s11019-015-9642-9

Paice, J.A., (2015). Pain at the end of life. In B.R. Ferrell, N. Coyle, & J. Paice (Eds.). 

Oxford textbook of Palliative Nursing, 4th edition (Chapter 7), New York, NY: Oxford University Press.

Paice, J.A.; Battista, V., Drick, C.A., & Schreiner, E., (2018). Palliative nursing summit: 

Nurses leading change and transforming primary palliative care: Nursing's role in providing pain and symptom management. Journal of Hospice & Palliative Nursing, 20(1), 30-35.

Praveen, D., Chowdary, P.R., Kumar, B.Y.P, & Aanandhi, M.V. (2018). A retrospective 

study on drug utilization evaluation of analgesics for palliative pain management. Drug Intervention Today, 10(3), 387-390. 

Wachterman, M. W., Pilver, C., Smith, D., Ersek, M., Lipsitz, S. R., & Keating, N. L. (2016). 

Quality of end-of-life care provided to patients with different serious illnesses. JAMA Intern Med, 176(8), 1095-1102. doi: 10.1001/jamainternmed.2016.1200

World Health Organization. (2018). Palliative care. Retrieved from

http://www.who.int/news-room/fact-sheets/detail/palliative-care