Palliative Care Nursing CE Course

e delivery modality, PC can also be provided in outpatient settings such as:

• medical clinics or physician offices
• long-term care facilities, including long-term acute care facilities
• skilled nursing facilities
• assisted living facilities
• group homes
• the patient's home
• inpatient hospice facility through telemedicine services (NHPCO, 2019)

PC is covered under Medicare Part B and Medicaid and may have a required co-payment due at the time of service. Many private insurance providers also cover PC services. Despite what insurance provider the patient has, some treatments or medications may not be covered. Once the patient is eligible and elects hospice care, their care falls under the hospice benefit of Medicare Part A, Medicaid, or private insurance. Medicare and Medicaid cover all costs related to the terminal diagnosis, except that Medicare does not cover room and board if the patient lives in a facility. The services covered include clinical and support services, medications, medical equipment (e.g., hospital bed, oxygen, walker, wheelchair, bedside commode), and supplies (e.g., dressing, ostomy, and incontinence). Most private insurances also cover all care related to the terminal diagnosis when the patient is on hospice; however, for some private insurance companies, the patient must first meet their deductible or pay a co-payment (NHPCO, 2019).

 

The APRN and Nurse's Roles in Palliative Care 

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, stroke, Alzheimer's disease, diabetes, and chronic kidney disease are among the leading causes of death and disability and annual health costs in the US. With the continued growth of the aging population, these numbers are expected to rise over the next decade, and PC's core principles and practices must be incorporated into routine clinical practice (NCCDPHP, 2022).

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 to reduce suffering. APRNs and nurses practice at the forefront of primary care across clinical settings and are, therefore, well-positioned to serve critical roles as members of the PC 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). HCPs must first develop and continuously evaluate the 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. All nurses should serve as advocates for their patient's sense of dignity and self-esteem by providing PC interventions to promote comfort and reduce suffering. The Hospice & Palliative Credentialing Center (HPCC) offers APRNs and nurses specializing in PC certification as an Advanced Certified Hospice and Palliative Nurse or Certified Hospice and Palliative Care nurse (ACHPN/CHPN; HPCC, n.d.). The 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 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. These are generally applicable to both advance practice and licensed nurses, indicated below with the umbrella term HCP (NCHPC, 2018). The eight domains are described in Table 1.

Table 1

The Eight Domains of Palliative Care

Domain 1: Structure and Processes of Care	The HCP serves as a member of the interdisciplinary PC team, obtaining the professional qualifications, education, and necessary training to acquire the core skillset. The HCP performs a comprehensive assessment and develops the PC plan aligned with the patient's wishes. The HCP facilitates 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 HCP 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 anticipating and preventing the symptoms associated with serious illness and its treatment. The HCP performs a comprehensive pain assessment and provides pain control that meets a level acceptable to the patient or the healthcare surrogate if the patient cannot report distress. The HCP 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 healthcare surrogate.
Domain 3: Psychological and Psychiatric Aspects of Care	The HCP 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 HCP 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 HCP uses clinical judgment and assessments to determine if referrals to mental health professionals, psychologists, or psychiatrists may be indicated; the APRN places referrals to mental health professionals, psychologists, and/or psychiatrists if indicated. The HCP advocates for patients when treating psychological issues such as anxiety, depression, hopelessness, post-traumatic stress disorder, substance use disorder, and withdrawal symptoms. The HCP 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 EOL.
Domain 4: Social Aspects of Care	The HCP 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 HCP 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 HCP 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 HCP recognizes that spirituality is a core component of PC, through which patients and families may seek meaning, purpose, and transcendence while enduring serious illness and contemplating death. The HCP performs a spiritual assessment, ensuring that spiritual, religious, and existential aspects of care are addressed, including screening for unmet needs and referring to chaplains or other spiritual leaders as indicated. The HCP acknowledges that spirituality can be expressed through values, beliefs, traditions, rituals, or practices. The HCP 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 HCP assesses and respects the patient and family values, beliefs, and traditions related to health and illness and acknowledges the impact of cultural influences on the PC delivery process. The HCP delivers culturally-sensitive care and avoids imposing personal biases or beliefs on patients and their families. The HCP 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 HCP participates in ongoing continuing education through 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; and grief, death, and bereavement.
Domain 7: Care of the Patient Nearing the End of Life	The HCP facilitates timely referrals to hospice in response to patients' changing needs and ongoing adjustments to the care plan to meet all of the patient's needs when nearing death. The HCP 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. The HCP plays a vital role in caring for patients and families as death approaches and must be skilled in recognizing the signs and symptoms at EOL, including in the final days and weeks of life. HCPs should be aware of these changes: decreased level of consciousness muscle relaxation of the face labored breathing (dyspnea, apnea, Cheyne stokes respirations) hearing is not diminished touch is diminished, but the patient can feel the pressure of touch mucus collecting in large airways (i.e., terminal secretions, death rattle) incontinence of bowel or bladder mottling (cyanosis) occurring with poor circulation pupils no longer reactive to light bradycardia, weak pulse, and/or hypotension cool extremities perspiration decreased urine output inability to swallow
Domain 8: Ethical and Legal Aspects of Care	The HCP applies the core ethical principles of PC to patients with serious illness, which include autonomy, substituted judgment (ethical duty of guardians and surrogate decision makers), beneficence, justice, and nonmaleficence, striving to prevent, identify, and resolve ethical dilemmas common to PC, 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 or pain control in the imminently dying patient The HCP facilitates appropriate referrals to ethics consultants or committees for decision-making and conflict-resolution assistance. The HCP honors patient autonomy by supporting patient preferences and decisions made by legal proxies or healthcare surrogates and is well-versed in the local and state laws related to ACP and decisions regarding life-sustaining treatments. The HCP facilitates goals of care discussions and ACP, including discussing the importance of completing advanced directives.

(NCHPC, 2018)

 

Benefits of Palliative Care

Despite strong evidence that patients benefit from early integration of PC services and EOL discussions incorporating ACP, these concepts are still not routinely addressed in clinical practice. Prognosis affects patients' choices about cardiopulmonary resuscitation (CPR) and additional life-sustaining measures at the EOL when adequately informed about their diagnosis. Unfortunately, many HCPs do not discuss goals of care due to a lack of time, discomfort, experience discussing difficult topics such as death and dying, and fear of negatively affecting the patient's and family's hopes and coping with their diagnosis. However, EOL discussions do not cause emotional harm to patients and their families. When open communication regarding prognosis, treatment options, and goals of care occurs, there is an increase in patient satisfaction, decreased patient anxiety, improved outcomes and quality of life, and an increased likelihood that the patient will ultimately die in their preferred location. Bereaved families also reported higher satisfaction and increased comfort of their loved ones when EOL and options for future care were discussed openly and honestly with the care team. They also report a better understanding of what to expect as their family member declines and ultimately dies due to disease progression. Thorough and open ACP also increases patient autonomy and reduces hospitalizations and the use of unwanted or unnecessary treatments leading to decreased healthcare costs. ACP discussions have also led to decreased rates of ventilator use, resuscitation efforts, and intensive care unit admissions. These discussions can also lead to an appropriate change in code status and early referral to hospice. APRNs or nurses are often well-positioned to facilitate these open, honest conversations with patients and families to ensure a timely referral to hospice services. There is evidence that ACP discussions led by APRNs lead to an increase in the completion of advance directives, including code status (Goswami, 2021; Hughes et al., 2019; Luta et al., 2021).

Choosing hospice is consistently linked to improved quality of life, enhanced symptom control, increased psychosocial and spiritual support, and more comfort through the dying process. Hospice often incorporates bereavement services for caregivers/family and is 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 (Bhatnagar & Lagnese, 2023; Wajid et al., 2021).

For additional information regarding this topic and care at the EOL, please refer to the NursingCE.com courses, Ethical Issues at the End-of-Life and Coping with Patient Death.

Advance Care Planning

ACP is a process that involves making decisions and having conversations about the types of healthcare treatment a person would want when they cannot make those decisions for themself. ACP can be completed at any age. Various factors, such as a mild chronic medical condition or a terminal illness with a limited life expectancy, can influence the timing of completion. ACP should be proactive, as its purpose is to ensure that individuals receive medical care that aligns with their values and goals. Regardless of the patient's clinical picture, ACP should be incorporated into the care plan. As the patient's clinical picture changes, ACP documents should be addressed and adjusted to meet the current needs and goals of the patient (Silveira, 2022). 

ACP is a core aspect of PC, allowing patients to articulate and document their goals, values, and preferences. It supports shared decision-making and helps clinicians formulate a treatment plan and provide care that aligns with the patient's preferences through the EOL. 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 or the loss of decision-making capabilities (Goswami, 2021; & Silveira, 2022).

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 ACP and PC, ideally starting at diagnosis" (Ballentine, 2018, p. 4). As with all aspects of care, there are legal and ethical dimensions surrounding ACP for the EOL. These are critical discussions that encompass serious decision-making during highly stressful times. Fundamental concepts of ACP include assessing the readiness of the patient and family to have these discussions, identifying a surrogate decision-maker(s), gauging patient and family understanding of the diagnosis and disease trajectory, discussing goals of care and treatment options, documenting the patient's preferences in the electronic medical record, and readdressing as the disease progresses or treatment options change (Goswami, 2021). Some of the fundamental components of ACP planning include the following:

Advance Directives

Advance directives are legally valid documents that address the specific treatments or medical care the patient wants and does not want if/when they cannot make decisions. These documents may also name secondary decision-makers authorized to speak for the patient if they are unable. The most common advance directives include a living will and durable power of attorney (DPOA). These documents do not go into effect until the patient loses the capacity to make their own decisions and can be changed at any point by the patient, either orally or in writing, as long as they have the cognitive function to do so.

• These must be completed while the patient maintains the mental capacity to make decisions.
• Advance directives may be subject to state regulations. For instance, one state's advanced directive may not work in another state. Therefore, HCPs 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 allowing patients and clinicians to download their state's advance directive forms (CaringInfo, n.d.; Silveira, 2022).

Living Will

A living will outlines the patient's wishes regarding future medical treatment, including life-sustaining measures and procedures. It enables the patient to outline legal instructions regarding preferences for specific medical care when they cannot make decisions for themselves. For example, a living will may address CPR, mechanical ventilation, and enteral nutrition and hydration. The document is known as a living will since it goes into effect while the patient is still living. For a living will to be valid, it must adhere to state guidelines. These guidelines differ from one state to another; some states require a living will to be standardized following a set outline, while others are more flexible and allow the individual more freedom in the language used as long as the document is signed and witnessed. Some states have specific guidelines regarding who can witness the signing of a living will. HCPs involved in an individual's treatment are often not permitted to act as witnesses. Once the individual cannot make their own healthcare decisions, their living will go into effect. Many states have specific guidelines that dictate criteria to deem a patient unable to make medical decisions (Sabatino, 2022; Silveira, 2022).

Durable Power of Attorney for Healthcare (DPOAHC)

A DPOAHC identifies an individual the patient has elected to make healthcare decisions on their behalf. The terminology used to describe this individual varies from state to state, but examples include the healthcare proxy, healthcare agent, healthcare representative, or surrogate decision maker. This individual is only given the authorization to make healthcare decisions. In some states, the decision-making authority of the DPOAHC goes into effect once the patient becomes incapable of making their own decisions. Other states recognize an immediately effective DPOAHC. This gives the DPOAHC the authority to make decisions on the patient's behalf immediately; however, if the patient maintains decision-making capacity, they can override any decisions made by the DPOAHC (Sabatino, 2022).

 

For additional information regarding this topic, please refer to the NursingCE.com course titled Advance Care Planning.

 

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

Bhatnagar, M., & Lagnese, K. R. (2023). Hospice care. StatPearls [Internet]. https://www.ncbi.nlm.nih.gov/books/NBK537296

CaringInfo. (n.d.). Advance directives. National Hospice and Palliative Care Organization. Retrieved May 22, 2023, from https://www.caringinfo.org/planning/advance-directives/by-state

Center to Advance Palliative Care. (n.d.). What is palliative care? Retrieved May 22, 2023, from https://getpalliativecare.org/whatis

DeVita, V. T., Jr., Lawrence, T. S., & Rosenberg, S. A. (2023). DeVita, Hellman, and Rosenberg’s cancer principles & practice of oncology (12th ed.). Wolters Kluwer.

Goswami, P. (2021). Advance care planning and end-of-life communications: Practical tips for oncology advanced practitioners. Journal of the Advanced Practitioner in Oncology, 12(1), 89-95. https://doi.org/10.6004/jadpro.2021.12.1.7

Hospice & Palliative Credentialing Center. (n.d.). Certification. Retrieved May 23, 2023, from https://www.advancingexpertcare.org/hpcc

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

Luta, Z., Ottino, B., Hall, P., Bowden, J., Wee, B., Droney, J., Riley, J., & Marti, J. (2021). Evidence on the economic value of end-of-life and palliative care interventions: A narrative review of reviews. BMC Palliative Care, 20(89). https://doi.org/10.1186/s12904-021-00782-7

National Center for Chronic Disease Prevention and Health Promotion. (2022). Chronic diseases in America. Centers for Disease Control and Prevention. 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/wp-content/uploads/2018/10/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf

National Hospice and Palliative Care Organization. (2019). Palliative care or hospice? The right service at the right time for seriously ill individuals. https://www.nhpco.org/wp-content/uploads/2019/04/PalliativeCare_VS_Hospice.pdf

Rabow, M. W., Pantilat, S. Z., Shah, A. C., Poree, L., & Mitra, R. (2023). Palliative care & pain management. In: M. A. Papadakis, S. J. McPhee, & M. W. Rabow (Eds.). 2023 Current medical diagnosis & treatment (62nd ed.). McGraw-Hill.

Sabatino, C. (2022). Advance directives. Merck Manual Professional Version. https://www.merckmanuals.com/professional/special-subjects/medicolegal-issues/advance-directives

Silveira, M. J. (2022). Advance care planning and advance directives. UpToDate. Retrieved May 22, 2023, from https://www.uptodate.com/contents/advance-care-planning-and-advance-directives

Wajid, M., Rajkumar, E., Romate, J., George, A. J., Lakshmi, R., & Simha, S. (2021). Why is hospice care important? An exploration of its benefits for patients with terminal cancer. BMC Palliative Care, 20(70). https://doi.org/10.1186/s12904-021-00757-8

World Health Organization. (2020). WHO definition of palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care