By the completion of this module, the learner should be able to:
- Define the distinguishing features of palliative care, compare and contrast to hospice care and end-of-life (EOL) care, and describe models of palliative care delivery.
- Discuss the eight domains of palliative care and the nurse’s role in care delivery as aligned with clinical practice guidelines.
- Identify the role of advance care planning (ACP) as a core aspect of palliative care and demonstrate understanding of the essential documents and features comprising ACP.
This module will focus on the components of palliative care and the palliative care delivery process with specific strategies and interventions for the nurse to utilize as a means to control distressing symptoms of serious illness, enhance comfort, and improve quality of life throughout the duration of the illness.
Palliative care (PC) is an interdisciplinary medical subspecialty that focuses on alleviating the pain, stressors, and other symptoms associated with a serious illness. A serious illness is defined as "a health condition that carries a high risk of mortality and either negatively impacts a person's daily function or quality of life or excessively strains their caregiver" (Kelley & Bollens-Lund, 2018, p. 8). While the term is widely utilized throughout healthcare settings, it is often misunderstood. Many people tend to confuse palliative care with end-of-life (EOL) or hospice care. The need for PC is heightened at the EOL due to increased symptom burden; however, it is appropriate at any point during a chronic illness. Unlike hospice care, PC can be provided at the same time as curative treatment (Center to Advance Palliative Care [CAPC], 2020). Pain management is a core component of palliative care but also exists as a stand-alone medical subspecialty. Pain is subjective and is often complicated by the uniqueness of the experience to each individual. The etiology of pain is usually complex and multifaceted, thereby heightening the importance of proper clinical assessment, diagnosis, and identification of underlying and contributing conditions to reduce pain to an acceptable level. With the rise of the opioid epidemic that continues to plague the US, nurses must have a comprehensive understanding regarding best practices for pain management to preserve the integrity of clinical practice, safeguard patient care, and reduce the risk for opioid use disorders (Rabow et al., 2020).
Part I. Palliative Care
The definition of palliative care has evolved over the last several decades. The World Health Organization (WHO), defines ‘palliative care’ as,
“an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2020).
The National Consensus Project for Quality Palliative Care defines palliative care as follows:
“Beneficial at any stage of a serious illness, palliative care is an interdisciplinary care delivery system designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, their families, and caregivers. Palliative care can be delivered in any care setting through the collaboration of many types of care providers. Through early integration into the care plan of seriously ill people, palliative care improves quality of life for both the patient and the family” (National Coalition for Hospice and Palliative Care [NCHPC], 2018, p. ii).
PC focuses 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. It is based on the patient's need, not prognosis. The primary goal is to promote comfort and ease the patient's suffering (CAPC, 2020). Palliative care aids in encouraging, promoting, and facilitating communication about goals of care and advance care planning. While PC is always a component of hospice care, it should not be reserved only for the EOL. PC is appropriate at any stage in a serious illness, and ideally should be employed throughout the active treatment of the disease (DeVita et al., 2019). It does not intend to hasten nor postpone death but instead offers a support system to help patients live as actively as possible until death (WHO, 2020). Hospice is within the continuum of palliative care (see Figure 1) but is the most intensive, refined form of palliative care that is implemented only at the end. 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, and the preeminent goals focus on enhancing the quality of life, comfort, and alleviation of suffering for both patients and their families (DeVita et al., 2019). Research consistently demonstrates a pattern of late referral to hospice for eligible patients, which leads to decreased benefits for patients and caregivers at the EOL. However, with the introduction of palliative care services, there has been a notable improvement in the timely transition of patients into hospice care. In an attempt to resolve the long-standing confusion between palliative care and hospice care, the term non-hospice palliative care is emerging to more accurately reflect the broader concern that palliative care signifies (Beasley et al., 2019).
Palliative care strives to fulfill the following objectives in patients with serious illness:
- To improve the patient's quality of life and positively influence the course of illness with an end goal of the patient living fully and at an acceptable comfort level throughout life;
- To be utilized early in the patient's disease trajectory, and offered in conjunction with therapies and medications that are intended to prolong life (such as chemotherapy, radiation, clinical trial drugs, etc.);
- To provide relief from pain and other distressing symptoms;
- To integrate the psychological and spiritual aspects of patient care;
- To address goals of care and ensure all care provided is aligned with patient wishes, including advance care planning, and decision-making in preparation for the end-of-life;
- To enhance care coordination through a team approach to care and facilitate communication among the healthcare team, patient, and family/caregiver;
- To offer a support system to help the patient and family cope during serious illness (CAPC, 2020; WHO, 2020).
Models of Palliative Care
Palliative care is provided by specially training physicians, APRNs, registered nurses, and other clinical specialists engaged in delivering an added layer of support to patients. Aside from the clinical team, PC can also be provided by an interprofessional team of support personnel including social workers, physical therapists, massage therapists, occupational therapists, music/art therapists, touch/energy therapists, and chaplains. Some healthcare institutions employ fully staffed palliative care teams comprised of many of these multidisciplinary support services. In contrast, other institutions may have only one individual who is deemed responsible for delivering palliative care. PC is not setting-specific as it can be provided through various channels. While hospital-based inpatient PC services are the most common care delivery modality, it can also be provided in outpatient settings such as dialysis offices, medical clinics or physician offices, long term care facilities, community-based settings (including the patient's home), hospice, and through telemedicine services. PC is assimilated 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:
- Nausea or vomiting
- Diarrhea or constipation
- Urinary incontinence
- Inability to perform ADLs (NCHPC, 2018).
The Nurse’s 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. Nurses 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 (NCHPC, 2018). The nurse supports 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 selfesteem by providing palliative care interventions to promote comfort and reduce suffering. The nurse’s 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 nurse serves as a member of the interdisciplinary PC team, obtaining the professional qualifications, education, and necessary training to acquire the core skillset;
- The nurse performs a comprehensive palliative care assessment and provides input during the development of the palliative care plan aligned with the patient's wishes;
- 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 nurse focuses on the screening, assessment, and management of symptoms, providing 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 per the provider’s orders;
- The nurse performs a 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 nurse performs ongoing assessments to determine the effectiveness of treatment and the need for modifications to 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 nurse 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 nurse 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 nurse uses clinical judgment and assessments to collect information to determine if referrals to mental health professionals, psychologists, and/or psychiatrists may be indicated;
- The nurse advocates for patients when treating psychological issues (i.e., anxiety, depression, hopelessness, post-traumatic stress disorder, substance use disorder, and withdrawal symptoms);
- The nurse 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 nurse 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 nurse 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 nurse assesses patient and family coping strategies and helps to develop 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 nurse 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 nurse helps to perform 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 nurse acknowledges that spirituality can be expressed through values, beliefs, traditions, rituals, or practices;
- The nurse 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 nurse 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 nurse delivers culturally sensitive care and avoids imposing personal biases or beliefs on patients and their family;
- The nurse 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 nurse participates in ongoing continuing education and training in cultural sensitivity 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 nurse helps to facilitate 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 nurse 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 nurse 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. Nurses 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
- Decreased urine output
- Inability to swallow (Cancer.Net, 2019).
Domain 8: Ethical and Legal Aspects of Care
- The nurse applies the core ethical principles of palliative care to patients with serious illness, which include autonomy, substituted judgment, beneficence, justice, and nonmaleficence, striving to prevent, identify, and resolve ethical dilemmas common to palliative care such as:
- Discussing forgoing or discontinuing treatments
- Educate regarding do not resuscitate (DNR) orders
- Educate themselves regarding state-specific portable medical orders, such as provider orders for life-sustaining treatment (POLST) and medical orders for life-sustaining treatment (MOLST)
- The appropriate utilization of sedation and/or pain control in the imminently dying patient;
- The nurse helps to facilitate appropriate referrals to ethics consultants or committees for assistance in decision-making and conflict resolution;
- The nurse 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 nurse 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 endoflife 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, the healthcare team 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 decisionmaking during highly stressful times. Some of the fundamental components of ACP planning include the following:
- Advance directives: these legally valid documents address endoflife 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 nurse 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 directive usually focuses on life-sustaining measures and procedures, outlining the patient's wishes concerning medical treatments. It enables the patient to legally outline their instructions regarding preferences for specific medical care when they are unable to make decisions for themselves. For a living will to 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 dies (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). Nurses 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. Nurses 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. Nurses 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.
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