Palliative Care for APRNs Nursing CE Course

d into the hospice Medicare benefit, as hospice care is primarily centered on promoting comfort during the dying process (CAPC, 2020; NCHPC, 2018).

Characteristics of Discomfort 

An important part of palliative care is identifying discomfort and anticipating factors that may cause discomfort. Some of the most common include:

• Pain
• Anxiety
• Restlessness
• Dyspnea
• Nausea or vomiting
• Diarrhea or constipation
• Dehydration
• Urinary incontinence
• Inability to perform ADLs (NCHPC, 2018).

The APRN Role in Palliative Care 

According to a 2018 Commonwealth Fund public health survey, Being Seriously Ill in America Today, more than 40 million adults in the United States experienced serious illness in the previous three years (Schneider et al., 2018). Data from the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) reports that six in ten adults in the US have a chronic disease, and four in ten adults have two or more chronic diseases. Heart disease, cancer, chronic lung disease, diabetes, and chronic kidney disease are among the leading causes of death and disability in the US. With the continued growth of the aging population, these numbers are expected to rise over the next decade, and the core principles and practices of palliative care must be incorporated into routine clinical practice (NCCDPHP, 2019).

The NCHPC (2018) recommends that all clinicians and support staff working in patient care settings, especially primary care settings, acquire the core skills and knowledge regarding PC practice as a means to reduce suffering. APRNs are practicing at the forefront of primary care across clinical settings and are therefore well-positioned to serve critical roles as members of the palliative care team. The NCHPC refers to these advanced practice providers as having the "ability to expand the capacity to deliver complex care and provide direct care" (NCHPC, 2018, p.1). The APRN develops an ongoing plan to monitor and address psychological responses, emotions, or changes in cognition as prognosis and goals of care evolve during the trajectory of the illness, serving as an advocate for the patient's sense of dignity and self-esteem by providing palliative care interventions to promote comfort and reduce suffering. The APRN role and specific interventions devised to meet the physical, spiritual, emotional, and psychosocial needs of the patient and family dealing with serious illness are summarized according to the NCHPC's (2018) eight domains below.

Clinical Practice Guidelines for Quality Palliative Care

The NCHPC (2018) released the fourth edition of the Clinical Practice Guidelines for Quality Palliative Care in 2018. The guidelines are organized into eight domains and offer tools and resources to help clinicians provide optimal relief from symptoms and stressors associated with severe illness. The eight domains are described in Table 1.

Domain 1: Structure and Processes of Care

• The APRN serves as a member of the interdisciplinary PC team, obtaining the professional qualifications, education, and necessary training to acquire the core skillset;
• The APRN performs a comprehensive palliative care assessment and develops the palliative care plan aligned with the patient's wishes;
• Emphasizes early referrals to PC and coordination of care recognizing that communicating and collaborating with professional colleagues dramatically improves the experience and outcome for patients and families.

Domain 2: Physical Aspects of Care

• The APRN focuses on the screening, assessment, and treatment of symptoms, offering interventions to relieve distressing physical manifestations of the illness (such as pain, nausea, constipation, fatigue, and dyspnea), as well as anticipates and prevents the symptoms associated with serious illness and its treatment;
• The APRN performs a comprehensive pain assessment and provides pain control that meets a level acceptable to the patient or the health care surrogate if the patient is unable to report distress;
• The APRN performs ongoing assessments to determine the effectiveness of treatment and the need for modifications of the treatment plan, such as lower or higher doses of medications, which serves as a means to effectively manage the symptoms associated with serious illness and treatments to improve well-being, functionality, and quality of life to a level acceptable to the patient or health care surrogate.

Domain 3: Psychological and Psychiatric Aspects of Care

• The APRN uses therapeutic communication to develop, maintain, and facilitate communication between the patient, family, and healthcare team to support the comprehension of information regarding disease progression and treatment choices;
• The APRN assesses the psychological and psychiatric aspects of care in the context of serious illness, including mental health assessment, suicidal ideation, preexisting psychiatric diagnoses, psychiatric diagnoses stemming from serious illness, or side effects of medications;
• The APRN uses clinical judgment to make appropriate referrals to mental health professionals, psychologists, and/or psychiatrists as indicated;
• The APRN advocates for patients when treating psychological issues (i.e., anxiety, depression, hopelessness, post-traumatic stress disorder, substance use disorder, and withdrawal symptoms);
• The APRN performs ongoing monitoring and assessment of long-term and evolving psychological and psychiatric responses and mental health issues throughout the trajectory of illness and through the end-of-life.

Domain 4: Social Aspects of Care

• The APRN integrates social assessments into the care plan to identify the social and practice needs of the patient and family, such as patient strengths; availability of caregiving and social support; access to reliable food, housing, and transportation; need for adaptive equipment; and other social or environmental issues;
• The APRN assesses and addresses patient and family social support needs including family structure and function, roles, responsibilities, quality of relationships, communication, decision-making preferences, practical resources, and safety;
• The APRN assesses patient and family coping strategies and develops a care plan for social services and support congruent with the patient's condition, goals, social environment, culture, and setting to maximize patient and family coping and quality of life.

Domain 5: Spiritual, Religious, and Existential Aspects of Care

• The APRN recognizes that spirituality is a core component aspect of PC, through which patients and families may seek meaning, purpose, and transcendence while enduring serious illness and contemplating death;
• The APRN performs a spiritual assessment, ensuring that spiritual, religious, and existential aspects of care are addressed, including the importance of screening for unmet needs and referring to chaplains or other spiritual leaders as indicated;
• The APRN acknowledges that spirituality can be expressed through values, beliefs, traditions, rituals, or practices;
• The APRN understands that the patient may have beliefs that contrast with those of close family members; fosters the patient and family wishes regarding cultural rituals, customs, or practices; and avoids imposing individual beliefs on others.

Domain 6: Cultural Aspects of Care

• The APRN assesses and respects the patient and family values, beliefs, and traditions related to health and illness, and acknowledges the impact that cultural influences can have on the palliative care delivery process;
• The APRN delivers culturally-sensitive care and avoids imposing personal biases or beliefs on patients and their family;
• The APRN practices cultural humility ("a process of openness, self-awareness, being egoless, and incorporating self-reflection and critique after willingly interacting with diverse individuals and embracing diversity" (NCHPC, 2018, p. 61); 
• The APRN participates in ongoing continuing education in cultural sensitivity training to acquire the skills to recognize how culture influences patient and family decision-making; their approach to illness; pain, psychological, social and spiritual factors; grief, death, and bereavement.

Domain 7: Care of the Patient Nearing the End of Life

• The APRN ensures timely referrals to hospice in response to patients’ changing needs, as well as ongoing adjustments to the care plan to meet all of the patient's needs when nearing death;
• The APRN offers counseling and education to patients and families about approaching death and the dying process and ensures adequate bereavement and grief support services are available to the family and care team (NCHPC, 2018);
• The APRN plays a vital role in the care of patients and families as death approaches and must be skilled in recognizing the signs and symptoms at end-of-life and the situations that are common in the final days and weeks of life. APRNs should be aware of these changes:
  • Decreased level of consciousness
  • Muscle relaxation of the face
  • Labored breathing (dyspnea, apnea, Cheyne Stokes respirations), "death rattle"
  • Hearing is not diminished
  • Touch diminished, but the patient can feel the pressure of touch
  • Mucus collecting in large airways
  • Incontinence of bowel and/or bladder
  • Mottling (cyanosis) occurring with poor circulation
  • Pupils no longer reactive to light
  • Pulse slow and weak and blood pressure dropping
  • Cool extremities
  • Perspiration
  • Decreased urine output
  • Inability to swallow (Cancer.Net, 2019). 

Domain 8: Ethical and Legal Aspects of Care

• The APRN applies the core ethical principles of palliative care to patients with serious illness, which include autonomy, substituted judgment, beneficence, justice, and non-maleficence, striving to prevent, identify, and resolve ethical dilemmas common to palliative care such as:
  • Forgoing or discontinuing treatments
  • Establishing do not resuscitate (DNR) orders
  • Instituting state-specific portable medical orders, such as provider orders for life-sustaining treatment (POLST) and medical orders for life-sustaining treatment (MOLST)
  • The application of sedation and/or pain control in the imminently dying patient;
• The APRN makes appropriate referrals to ethics consultants or committees for assistance in decision-making and conflict resolution; 
• The APRN honors patient autonomy by supporting patient preferences and decisions made by legal proxies or health care surrogates, and is well-versed in the local and state laws related to advance care planning and decisions regarding life-sustaining treatments;
• The APRN facilitates goals of care discussions and advanced care planning, including the creation of advanced directives, and other legal documents for patients and their families facing end of life issues (NCHPC, 2018).

Advance Care Planning 

According to the National Hospice and Palliative Care Organization (NHPCO, 2020), advance care planning (ACP) is a core aspect of palliative care, as it allows patients to articulate and document their goals and preferences, which helps clinicians profoundly and effectively support them through the end-of-life. Healthcare practitioners in all settings are encouraged to devise treatment plans that are informed and driven by the patient's goals of care and the predicted trajectory their illness will take (Ballentine, 2018). Goals of care discussions and ACP are essential components of PC at all stages of illness but become increasingly dire as the patient's health status declines. Ideally, primary care providers should encourage patients to identify a surrogate healthcare decision-maker (healthcare proxy) before the onset of illness. According to a report from the California State University (CSU) Palliative Care Institute, at minimum, it is appropriate to ask patients at any stage of health if they have thoughts about their healthcare preferences in the event of a crisis. However, "an illness with a terminal trajectory is one that unequivocally should be accompanied by advance care planning and palliative care, ideally starting at diagnosis" (Ballentine, 2018, p. 4). As with all aspects of care, there is a legal dimension to care that surrounds ACP for the end of life. These are critical discussions that encompass serious decision making during highly stressful times. Some of the fundamental components of ACP planning include the following:

• Advance directives: these legally valid documents address end of life issues, enabling the patient to plan for and communicate decisions relating to EOL care.
• Advance directives may be subject to state regulations. For instance, one state's advanced directive may not work in another state. The APRN should counsel patients on the legal implications of traveling and the role of advanced directives per their state’s guidelines. 
• CaringInfo, a program of the NHPCO, offers free resources to help patients and clinicians make decisions about EOL care. CaringInfo also provides a website that allows patients and clinicians to download their individual state's advance directive.
• Living will: this form of advanced directives usually focuses on life-sustaining measures and procedures, outlining the patient's wishes concerning medical treatments. It enables the patient to outline legal instructions regarding preferences for specific medical care when they are unable to make decisions for themselves. For a living will to legally guide medical decision-making, specific parameters must be met and it must be certified by a physician or licensed practitioner following the state's guidelines: (1) the patient is unable to make medical decisions, (2) the patient's medical condition is specified in the state's living will law, and (3) other requirements may apply, depending upon the state.
• Health care proxy (also known as medical power of attorney): this document allows the patient to appoint someone to make medical decisions when they are no longer able to do so on their behalf. Many states have specific requirements (NHPCO, 2020).

Limitations of Palliative Care

Despite strong evidence that patients benefit from early integration of palliative care services and EOL discussions incorporating ACP, these concepts are still not routinely addressed in clinical practice. Prognosis affects patients' choices about CPR and additional life-sustaining measures at the EOL when they are adequately informed about their diagnosis (Hawley, 2017). EOL discussions do not cause emotional harm to patients and their families. 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 ones. They also report a better understanding of what to expect as their family member died (Hughes et al., 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 versus 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). Choosing hospice is consistently linked to improvements in quality of life at the EOL, enhanced 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 are more likely to develop a major depressive disorder, experience regret, feel unprepared for the patient's death, and report poorer quality of life (Hughes et al., 2019). APRNs are well-positioned to facilitate these open, honest conversations with patients and families to ensure a timely referral to hospice services (NCHPC, 2018).

The patient's wishes at the EOL have been studied extensively, and research demonstrates that patients want practical, 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 similarly as crucial 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. APRNs can help stimulate hope by reassuring patients that they are receiving proper care and that all the right things are being done or have been done. APRNs should ensure patients that they will not be abandoned, offering completeness of information, and provide choices to uphold their autonomy (Kellas et al., 2017; Olsman et al., 2016). 

For additional information regarding this topic and care at the end-of-life, please refer to the NursingCE.com course titled, Ethical Issues at the End-of-Life.

References

Ballentine, J. M. (2018). The five trajectories: Supporting patients during serious illness. CSU Institute for Palliative Care, 1-14.  https://csupalliativecare.org/wp-content/uploads/Five-Trajectories-eBook-02.21.2018.pdf

Beasley, A., Bakitas, M. A., Edwards, R., & Kavalieratos, D. (2019). Models of non-hospice palliative care. Annals of Palliative Medicine, 8(Suppl 1), S15-S21. http://apm.amegroups.com/article/view/19229/22761

Cancer.Net. (2019). Care through the final days. https://www.cancer.net/navigating-cancer-care/advanced-cancer/care-through-final-days

Center to Advance Palliative Care. (2020).  What is palliative care?  https://getpalliativecare.org/whatis/

DeVita, V. T., Lawrence, T. S., & Rosenberg, S. A. (2019). DeVita, Hellman, and Rosenberg’s cancer principles & practice of oncology (11^th ed.). Wolters Kluwer

Hawley, P. (2017). Barriers to access to palliative care. Palliative Care, 10, 1-6. https://doi.org/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. https://doi.org/10.1186/s12904-019-0401-1

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

Kelley, A. S., & Bollens-Lund, E. (2018). Identifying the population with serious illness: The “denominator” challenge.  Journal of Palliative Medicine, 21(S2), S7-S16. https://www.ncbi.nlm.nih.gov/pubmed/29125784

National Center for Chronic Disease Prevention and Health Promotion. (2019). Chronic diseases in America. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm

National Coalition for Hospice and Palliative Care. (2018). Clinical practice guidelines for quality palliative care (4th ed.). https://www.nationalcoalitionhpc.org/ncp

National Consensus Project. (2018). Clinical practice guidelines for quality palliative care (4th ed.). https://www.nationalcoalitionhpc.org/wp-content/uploads/2018/10/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf

National Hospice and Palliative Care Organization (2020). Advance care planning. https://www.nhpco.org/patients-and-caregivers/advance-care-planning

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. https://doi.org/10.1007/s11019-015-9642-9

Rabow, M. W., Pantilat, S. Z., Shah, A., Poree, L., & Steiger S. (2020). Principles of pain management. In: M. A. Papadakis, S. J. McPhee, & M. W. Rabow (Eds.). Current medical diagnosis and treatment 2020. McGraw-Hill

Schneider, E., Abrams, M., Shah, A., Lewis, C., & Shah, C. (2018). Health care in America: The experience of people with serious illness. The Commonwealth Fund, 1-12. https://www.commonwealthfund.org/sites/default/files/2018-10/Schneider_HealthCareinAmerica.pdf

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. https://doi.org/10.1001/jamainternmed.2016.1200

World Health Organization. (2020). WHO definition of palliative care. https://www.who.int/cancer/palliative/definition/en/