Ethical Issues at End of Life Nursing CE Course

The NIA (2021) describes the four domains of care needed at the EOL: physical comfort, mental and emotional needs, spiritual issues, and practical tasks.  

Physical Comfort 

Providing physical comfort primarily focuses on managing pain and other physically distressing symptoms, such as digestive discomfort, dyspnea, and skin irritation. Pain is one of the most critical symptoms at the EOL and significantly impacts patient QOL. The World Health Organization (WHO) has reported that 80% of patients with acquired immunodeficiency syndrome (AIDS) or cancer and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease (COPD) will experience moderate to severe pain at the EOL. Pain is undertreated in most settings, contributing significantly to patient anxiety, discomfort, and suffering at the EOL. Unresolved pain is of paramount concern to most individuals faced with death. Severe and unresolved pain may hasten death by increasing physiological stress, decreasing immunity, limiting mobility, increasing the workload of the heart and lungs, and increasing the risk of the patient developing pneumonia and thromboembolism. Most pain at the EOL is managed with oral (including sublingual and buccal), topical, or intravenous routes of medication administration and through nonpharmacological modalities such as frequent repositioning, skincare, application of cold or warm packs, and massage (Fink et al., 2019; NIA, 2021; Paice, 2019; Praveen et al., 2018; WHO, 2020).  

Dyspnea is another symptom that many terminally ill patients fear at the EOL. Dyspnea is a symptom common with many terminal illnesses, including multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), lung cancers, liver failure, COPD, and heart failure, to name a few. A characteristic abnormal breathing pattern associated with EOL is known as Cheyne-Stokes breathing. In many cases, oxygen and opioids are first-line treatment options for managing dyspnea at the EOL. Fear and stigma surrounding narcotics, especially opioids such as morphine (MS Contin, Astramorph, Roxanol) and benzodiazepines such as lorazepam (Ativan), remain a significant barrier to adequate pain and dyspnea management. HCPs should educate family members and caregivers that, at the EOL, it is essential to focus on relieving pain and dyspnea and maintaining comfort without focusing on long-term consequences such as dependence. Many family members and caregivers become concerned and withhold opioids due to excessive sleeping after the first few doses. It is essential to educate them that prolonged sleeping may result from adequate pain relief and symptom management, allowing the patient to rest. Some also believe opioids hasten death, especially morphine sulfate (MS Contin, Astramorph, Roxanol). However, multiple research studies have concluded that morphine sulfate (MS Contin, Astramorph, Roxanol) does not hasten death at the EOL when prescribed and administered appropriately to manage patient symptoms (Fink et al., 2019; NIA, 2021; Paice, 2019; Praveen et al., 2018; WHO, 2020).  

Skin irritation and fragility are highly prevalent among terminal patients at the EOL. This irritation can be very uncomfortable and painful for patients. Decreased nutritional intake and immobility can increase a patient's risk of pressure injuries. Due to inadequate caloric intake, treating these pressure injuries may be difficult or impossible in some cases. Consequently, offloading high-pressure areas and repositioning on a frequent schedule is essential for prevention. Dry mucous membranes and using oxygen can leave the patient's nose and lips dry and cracked. The higher the liter flow of oxygen, the more susceptible the patient is to this. To relieve these symptoms, a mouth moisturizer, ice chips (if the patient is conscious), or moist swabs can keep the patient's lips and mouth moist, and a balm can be used in the nostrils to prevent cracking and bleeding. It is important to educate families and caregivers that petroleum jelly is contraindicated for patients treated with oxygen due to its explosive properties. A skin condition that can present at the EOL is a Kennedy ulcer, sometimes referred to as a Kennedy terminal ulcer (KTU). A Kennedy ulcer begins as an oval or butterfly-shaped discoloration—similar to a bruise—that appears suddenly and progresses rapidly. These ulcers grow as the skin continues to break down. Although the exact cause is unknown, the appearance of Kennedy ulcers is often attributed to the vascular system and other organs and bodily functions shutting down. There are no treatment options for Kennedy ulcers, and they usually only appear at the final stage of the EOL process. Their appearance can indicate to caregivers and family members that it is time to gather and say their final goodbyes (HPNA, 2015; NIA, 2021).  

Mental and Emotional Needs  

Managing mental and emotional needs is another core responsibility when caring for those nearing the EOL. Although it is critical to managing physical pain, treating emotional distress and mental anguish is equally important. Alert patients may endure fear, anxiety, depression, sadness, regret, or remorse when nearing the EOL. Many patients bear an overabundance of emotions and may cycle through emotional ups and downs as time passes. Some may have specific fears or concerns, such as being alone as they actively die 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. Loved ones, friends, and family members grieve in unique 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. This withdrawal can be particularly challenging for patients who may feel isolated, abandoned, and lonely. Simple gestures of physical contact such as holding hands, offering a light touch, or administering a gentle massage can help promote feelings of connection and soothe the patient. Being present in the patient's room or home is often enough to help alleviate mental anguish and fears of dying alone (Kellas et al., 2017; NIA, 2021; Paice et al., 2018; Wachterman et al., 2016). 

Spiritual Needs 

Spiritual needs at the EOL can vary greatly and may include searching for ultimate meaning or purpose in one's life and finding peace by ending disagreements or resolving unsettled issues with others. Many can find solace in their faith or religion during the dying process and openly welcome visits from a spiritual care coordinator or their chosen religious leader. Some patients continue to struggle with their spiritual beliefs and religion at the EOL, and interventions must be tailored to meet their needs. Sharing positive memories and engaging in a life review are strategies that may help patients come to peace before death, as they promote connectedness and comfort. Members of the care team must take great care not to impose their personal spiritual beliefs or rituals onto a patient. The spiritual aspect of care should be approached with dignity and respect for the views of the patient and their family members. Additionally, certain religions have specific guidelines and protocols that are initiated once the patient is actively dying or upon the patient's death. The care team should attempt to facilitate and honor these rituals in the plan of care (NIA, 2021; Olsman et al., 2016).   

Practical Tasks  

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 patients and caregivers. Everyday tasks are crucial, such as taking care of a patient's pet, keeping up with household bills and chores, or finalizing personal affairs. Patients may worry or become anxious about who will care for their spouse, children, or beloved pet in the future, so making proper arrangements that the patient supports can alleviate fear and induce peace and comfort (NIA, 2021). 

Ethical Principles 

Ethics is a discipline studied in nearly all professions. It 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 are not based on emotions or feelings and are not laws or legally binding. Instead, they are standards of conduct that define the essentials of honorable behavior. Issues in medical ethics often involve life and death, and various disciplines offer ethical standards applicable to different groups of HCPs. 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 (ANA, 2015; Markose et al., 2016). 

The American Medical Association (AMA, n.d.-b) 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 each patient's benefit, with the first edition of standards written in 1847. Formalized ethics in nursing date back to the 1800s, when Florence Nightingale developed a pledge to practice faithfully, engage in purity, and elevate the nursing profession's standards by committing herself to the welfare of patients. This became the basis for the ANA's current code of nursing ethics developed in 2001, see Table 2. It consists 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 ethical nursing practice. In addition, the ANA has devised a position statement outlining nurses' roles and responsibilities in providing care and support at the EOL. Nurses' roles and responsibilities when providing care at the EOL are grounded in the fundamentals of practice and clinical ethics (ANA, 2015; ANA, 2016).  

Certified case managers (CCMs) often confront ethical dilemmas. They must abide by the Code of Conduct and the professional code of ethics for their specific discipline, which offer guidance and support in resolving 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 governed by eight principles of professional conduct. These principles and their application to EOL care are outlined in Table 3. 

Advance Care Planning (ACP) 

Confronting the reality of a patient's declining condition and impending death is typically difficult for patients and families. Choices about the most appropriate healthcare 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. All individuals have the right to an assessment and discussion regarding their wishes about treatment preferences if they become acutely or chronically ill. Ideally, this conversation should occur when the patient is emotionally, physically, and cognitively well enough 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 before imminent death (ANA, 2016).  

 ACP involves a discussion 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. Advance directives are the expression of the patient's preferences for medical care that become relevant when the patient cannot speak for themselves or is no longer cognitively competent to make decisions. ACP preparation may also include the identification of a healthcare proxy or someone who will represent and uphold the patient's preferences in decisions about treatment and interventions. 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. The individual's right to decide on the use of advanced treatments and their EOL care based on disease progression and prognosis must be respected ethically (AMA, n.d.-a; Kamik & Kanekar, 2016; NIA, 2021). 

The most common types of advance directives include a living will, a durable power of attorney (DPOA) for health care (or medical power of attorney), do not resuscitate/do not attempt resuscitation orders (DNR), and medical/physician orders for life-sustaining therapy (MOLST, POLST). The AMA's (n.d.-b) Code of Medical Ethics states that physicians and care teams have a responsibility to help patients define their goals of care. They must also respect patients' preferences, support 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 ACP to be undertaken in anticipation of a 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, articulate the factors that are important to them to maintain a certain QOL, and clarify any preferences they have concerning specific interventions. This may include mechanical ventilation, the creation of a tracheostomy for extended respiratory support, or the insertion of a percutaneous endoscopic gastrostomy (PEG) tube for artificial nutrition. Ultimately, ACP strives to safeguard care at the EOL and ensure it is congruent with the patient's wishes and values. Case managers are excellent resources for ACP, 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 allow the patient to identify which person(s) they would want to make decisions on their behalf if they do not have decision-making capacity. The patient must choose an individual who supports their wishes for EOL care and treatment (ANA, 2016; CCMC, 2019; HPNA, 2015).   

Preparing for EOL and making decisions about treatments and preferences can be challenging and distressing for many patients and their families; however, failing to plan for these events can be even more stressful and devastating. According to the National Cancer Institute (NCI), those without predetermined and documented plans on how they would want to 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, along with greater costs of care and utilization of burdensome and expensive healthcare services and resources offering minimal therapeutic benefit. Each state has unique definitions and practices regarding how individual rights to determine healthcare treatment are guaranteed (NCI, 2022). 

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 unlikely to benefit the patient. Medical futility concerning EOL care occurs when (a) the likelihood that an intervention will help the patient is exceedingly poor and (b) there has been a failure to achieve the goals of prolonging life and improving QOL. There is often an associated disproportionate harm-to-benefit ratio, and clinical interventions are viewed as imposing high costs or inflicting harm. While most HCPs believe ineffective treatments should not be provided during the EOL, the definition of futility is not static when applied to complex patient situations. Instead, the concept must be defined based on each patient's unique condition. Therefore, it remains a common ethical dilemma during the end of a person's disease trajectory or illness (Aghabarary & Nayeri, 2016; Armstrong et al., 2014).  

The AMA (n.d.-b) has indicated that providers 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, their family, or guardian sees an intervention as beneficial even when the provider does not. Although the ethical requirement to respect patient autonomy entitles a patient to choose among medically acceptable treatment options (or reject all treatment options), it does not authorize patients to receive any treatment they request. 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 are projected to bestow clinically significant benefit to the patient at the EOL (AMA, n.d.-b; ANA, 2016). 

Withdrawing or Withholding Medical Interventions 

According to the AMA (n.d.-b), a competent patient with decision-making capacity has the right to decline any medical intervention or request that an intervention is stopped, even when that decision is expected to lead to death. This decision 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 accepting or refusing clinically appropriate food and fluids delivered by either oral or artificial means. Patient (or surrogate) decisions must be respected, provided the decision is based on accurate information and represents patient preferences. If a patient lacks the cognitive ability to make care decisions, the patient's surrogate may decline an intervention or ask to stop an intervention on the patient's behalf. When an intervention is no longer helpful in achieving the patient's goals of care or desired QOL, it is ethically appropriate for physicians to withdraw that care. The AMA (n.d.-b) and the ANA (2016) have mutually agreed that there is no ethical, moral, or legal difference between withholding care (i.e., never starting it) or withdrawing care (i.e., stopping it). Furthermore, decisions about accepting or forgoing nutrition and hydration should be honored, including those about artificially delivered nutrition and the decision to stop eating and drinking to hasten death voluntarily. The ANA urges providers to avoid initiating a therapy they are unwilling to discontinue. As noted earlier, the patient's care team must collaborate to elicit goals of care and preferences regarding life-sustaining interventions early in the disease process to avoid complex ethical dilemmas at the EOL (AMA, n.d.-b; ANA, 2016, 2017). 

Medical Aid in Dying 

As more states pass laws legalizing medical aid in dying, media reports have often confused the topic with suicide, euthanasia, or physician-assisted suicide, but there are distinctions. Physician-assisted suicide and euthanasia are acts in which the patient dies at the hand of a physician or another medical provider: the physician performs the act at the patient's request. The American Association of Suicidology (AAS) distinguishes medical aid in dying from suicide since the terminal patient wants to live but suffers from a life-ending illness. Medical aid in dying allows terminally ill adults to request and receive prescriptions for a combination of medications that they may choose to administer themselves to bring about a peaceful death. There are specific qualifications that the patient must meet, including being mentally capable of making healthcare decisions and being willing and able to self-administer the medication. The patient must also have a prognosis that makes them eligible for hospice care, including an average life expectancy of no more than six months. Currently, eleven jurisdictions in the US authorize medical aid in dying, including California, Colorado, Montana, New Mexico, Oregon, Vermont, Washington, Hawaii, New Jersey, Maine, and the District of Columbia (ANA, 2019; Compassion & Choices, 2022).  

Due to the heightened media attention, the ANA (2019) put forth a position statement to guide nurses on ethical decision-making in response to a patient's request for medical aid in dying. Legally and ethically, nurses may not administer any drug with the intention of inducing a patient's death. Therefore, the ANA urges nurses to ensure their actions align 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 to never "abandon or refuse to provide comfort and safety measures to the patient" who has chosen medical aid in dying (ANA, 2019, p. 2). The patient may request a nurse to be present when they self-administer the medications used in this process. This is often the case for hospice patients who have established a trusting relationship with their case manager and other members of the IDT. Although nurses cannot actively participate in procuring or administering the medications used to elicit patient death, they can provide compassionate care and promote patient comfort through symptom management. Before agreeing to be present, the nurse must evaluate their beliefs on the topic. The nurse must be able to support the patient's decision but does not have to share the patient's beliefs (ANA, 2019).  

Moral Distress in Nursing 

Nurses are frequently asked to provide guidance to patients and families confronting difficult decisions and accepting death. The hallmark of high-quality EOL care is respect for patient self-determination through advocacy and 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) requires nurses to make every effort to ensure aggressive symptom management at the EOL; the code of ethics also indicates it is never ethically permissible for a nurse to act by omission or administer medication with the intention of ending a patient's life. This can provoke moral distress among nurses who, for example, administer the last dose of morphine sulfate (MS Contin, Astramorph, Roxanol) 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 an aggressive step in pain control for the dying patient. The intention of the medication administration was not to end the patient's life. However, many nurses may experience conflicting emotions about their role and actions. Sometimes, the family's preferences contrast with the patient's preferences. 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 (ANA, 2015, 2016).   

Implications for Practice   

Despite strong evidence that patients benefit from an early integration of EOL discussions and consistent evidence that they want to talk about it, the topic is not routinely addressed. It is too often still the elephant in the room. Each prognosis affects a patient's choices about cardiopulmonary resuscitation (CPR), mechanical ventilation, and additional life-sustaining measures at the EOL. Informed decisions cannot be made when patients and family members are not adequately educated about the diagnosis, treatments, and EOL options. EOL discussions do not cause emotional harm to patients and their families. In fact, when EOL and options for future care are discussed, bereaved families report higher satisfaction with communication from the care team and increased comfort for their loved ones. They also report a better understanding of what to expect as their family member dies. Patients who have EOL discussions with their provider and care team are more likely to accept their diagnosis as terminal, have an advance directive in place, complete a DNR order, and prefer medical treatment focused on relieving pain versus extending life with futile interventions. They are more likely to choose hospice care and die at home. Prepared patients are less likely to receive mechanical ventilation, have a feeding tube, undergo resuscitation efforts, or be admitted to an intensive care unit. At the EOL, the QOL decreases with additional aggressive interventions, whereas the QOL increases with hospice care. Choosing hospice is consistently linked to improved QOL at the EOL, greater symptom control, increased emotional support, and more comfort through the dying process. Hospice is also associated with a decreased incidence of 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 (QOL; Hawley, 2017; Hughes et al., 2019; Wachterman et al., 2016).  

Patients' wishes at the EOL have been studied extensively. While data primarily relates to cancer, other illnesses are represented. 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 hear. Patients strive for hope and optimism and prefer discussions that emphasize 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 security, ensuring they will not be abandoned, offering completeness of information, and providing them with choices to uphold their autonomy (Kellas et al., 2017; Olsman et al., 2016). 

End-of-Life Specialty Certifications and Organizations  

Nurses often seek certification in their area of expertise, and EOL care is no different. While all nurses are expected to deliver safe, effective, and competent care to patients at the EOL, there are higher-level certifications for those wishing to demonstrate expertise in this specialty. Being certified in EOL allows nurses to offer patients a higher level of care and additional training and experience in handling the various ethical implications of EOL care. Currently, the Hospice and Palliative Credentialing Center (HPCC) is the only nationally recognized certifying body for hospice and palliative care nurses and advanced practice registered nurses (APRNs). HPCC currently offers four different certifications (HPCC; n.d.):  

• The Advanced Certified Hospice and Palliative Nurse (ACHPN) certification is designed for experienced hospice and palliative care APRNs.  

• The Certified Hospice and Palliative Nurse (CHPN) certification is designed for experienced hospice and palliative care RNs.  

• The Certified Hospice and Palliative Pediatric Nurse (CHPPN) is designed for experienced hospice and palliative pediatric RNs.  

• The Certified Hospice and Palliative Licensed Nurse (CHPLN) is designed for experienced hospice and palliative licensed practical or vocational nurses.   

Key Points 

• The 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 practices in advance care planning include having EOL 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 that help guide complex decision-making and moral dilemmas that present during the EOL. 

• Communicating and collaborating with professional colleagues significantly improves the experiences and outcomes for patients and families at the EOL.

References 

Aghabarary, M., & Nayeri, N. D. (2016). Medical futility and its challenges: A review study. Journal of Medical Ethics and History of Medicine, 9, 1-13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5203684/ 

American Medical Association. (n.d.-a). Advance directives. Retrieved June 20, 2022, from https://www.ama-assn.org/delivering-care/ethics/advance-directives 

American Medical Association. (n.d.). Code of medical ethics: Caring for patients at the end of life. Retrieved May 20, 2022, 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. 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. https://www.nursingworld.org/~4af078/globalassets/docs/ana/ethics/endoflife-positionstatement.pdf 

American Nurses Association. (2017). Nutrition and hydration at the end of life. 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. 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. https://doi.org/10.1016/j.mayocp.2014.08.017 

Berger, A. M., & O'Neill, J. F. (2022). Principles and practice of palliative care and supportive oncology (5th ed.). Wolters Kluwer. 

Centers for Medicare & Medicaid Services. (2018). CMS manual system: Pub 100-02 Medicare benefit policy. Department of Health & Human Services. https://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/2018Downloads/R246BP.pdf 

Commission for Case Manager Certification. (2015a). Code of Professional Conduct for case managers with standards, rules, procedures, and penalties. 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. 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. https://ccmcertification.org/sites/default/files/issue_brief_pdfs/ccmc-april-ib-web.v2_1.pdf 

Compassion & Choices. (2022). Medical aid in dying: A policy to improve care and expand options at life's end. https://compassionandchoices.org/docs/default-source/policy/final-2022---medical-aid-in-dying-policy-book-2022-3.17.22.pdf 

Fink, R. M., Gates, R. A., & Jeffers, K. D. (2019). Pain assessment. In B. R. Ferrell & J. A. Paice (Eds.), Oxford textbook of palliative nursing (5th ed., Chapter 8). Oxford University Press. 

Hawley, P. (2017). Barriers to access to palliative care. Palliative Care, 10, 1-6. https://doi.org/10.1177/117/8224216688887 

Hospice & Palliative Credentialing Center. (n.d.). Certification. Retrieved May 20, 2022, from https://advancingexpertcare.org/HPNA/Certification/About_Certification/HPCC/CertificationWeb/About_Certification.aspx 

Hospice & Palliative Nurses Association. (2015). Core curriculum for the hospice and palliative registered nurse (4th ed.). Kendall Hunt.  

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. https://doi.org/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. https://doi.org/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. Behavioral Sciences, 7(2), 33-45. https://doi.org/10.3390/bs7020033 

Markose, A., Kirshnan, R., & Ramesh, M. (2016). Medical ethics. Journal of Pharmacy & BioAllied Sciences, 8(suppl 1), s1-s4. https://doi.org/10.4103/0975-7406.191934 

National Cancer Institute. (2022). Planning the transition to end-of-life care in advanced cancer (PDQ®)-health professional version. https://www.cancer.gov/about-cancer/advanced-cancer/planning/end-of-life-hp-pdq 

National Institute on Aging. (2021). Providing care and comfort at the end of life. 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. Medicine, Health Care, and Philosophy, 19, 11-20. https://doi.org/10.1007/s11019-015-9642-9 

Paice, J. A. (2019). Pain management. In B. R. Ferrell & J. Paice (Eds.). Oxford textbook of palliative nursing (5th ed., Chapter 9), 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. https://doi.org/10.1097/NJH.0000000000000405 

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. https://www.researchgate.net/publication/325011678_A_retrospective_study_on_drug_utilization_evaluation_of_analgesics_for_palliative_pain_management 

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 Internal Medicine, 176(8), 1095-1102. https://doi.org/10.1001/jamainternmed.2016.1200 

World Health Organization. (2020). Palliative care.  

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