Pain remains a common symptom experienced in the palliative care patient population. Despite advances in pain management, patients remain at risk for inadequate relief, especially at end of life (EOL). In order to provide quality pain relief, nurses must possess appropriate knowledge regarding assessment and treatment including pharmacological and nonpharmacological interventions. This chapter provides nurses with a basic overview of the principles of pain assessment and pharmacological management throughout the illness continuum and at EOL. The needs of special populations who have been identified as “at risk” of inadequate pain control are highlighted, including older adults, children, persons with communication impairment, patients with a history of substance abuse, and cancer survivors. These groups represent those in whom pain is often unrecognized, not respected or not believed. Many of the principles of pain assessment and management reviewed can be applied to children.
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An adult is presumed to have the ability to make his or her own healthcare decisions—including termination of life-sustaining technology—unless he or she is shown to be incapacitated by clinical examination or ruled incompetent by a court of law. Advance care directives are legal vehicles used by people to provide guidance to their healthcare providers concerning the care they would desire in the event they become incapacitated and cannot make their own decisions. Problems with advance directives may arise when they do not seem to apply to the patient’s situation. Nurses roles include educating the patient and family about the patient’s condition and legal end-of-life (EOL) choices, identifying the patient’s and family’s wishes for EOL care, articulating the patient’s and family’s desires to other members of the healthcare team, and assisting the patient and family to obtain necessary and appropriate EOL care.
Cancer is a devastating diagnosis that many individuals still associate with death. Upon initial diagnosis, individuals embark on a treatment journey that is overwhelming with medical jargon, new healthcare providers, unknown outcomes, and fluctuations of hope amid the distressing effects of the disease and its treatment. The most frequently diagnosed adult cancer types are female breast, prostate, lung, and colorectal cancer. These four most commonly occurring cancers will be the focus of this chapter. The overall incidence and prevalence of cancer has increased with individuals living with cancer as a chronic illness. Treatment options have improved survival rates, decreased toxicity, and provided palliation. Symptoms associated with the disease and the toxicities of treatment require a commitment to an interprofessional model of care across healthcare settings. Palliative care focuses on the physical, psychosocial, and spiritual needs of the cancer patient and family as well as bereavement needs of families.
Chronic obstructive pulmonary disease (COPD) is the third leading cause of death in the United States and the leading cause of death due to a respiratory cause. Development of this disease occurs as the result of cigarette smoking and exposure to environmental pollution. In addition, the normal physiologic changes due to the aging process place individuals at an increased risk for the development of complications, such as cor pulmonale and pneumonia. In order to reduce the risk of developing the complications of COPD, smoking cessation is recommended. Pharmacologic modalities focus on improving ventilation, reducing inflammation, and preventing complications. Nonpharmacologic interventions including exercise, rest, and improved nutrition can be valuable complementary therapies in the care of patients with COPD. To provide palliative care for patients at every stage of COPD, from diagnosis to the end of life, the nurse needs to acquire the knowledge and skills for expert nursing care.
Loss and suffering are universal experiences that occur across the life span. How one learns to accept, adapt to, and advance through these experiences determines how the individual will move through life itself. Although culture and ethnicity may influence an individual’s views on living with and dying from life-threatening illness, individuals must be recognized as unique and encouraged to grieve as is most appropriate for them. Traditional grieving theories view the process in stages with closure or resolution; more contemporary theories view the process as nonstaged, individual, and ongoing. Terminal illness can occur over an extended period of time or a brief period of time. The nurse functions as both facilitator and participant in this process. The nurse also can add objectivity while the patient and family resolve many feelings, issues, and decisions related to the living–dying experience.
Gastrointestinal (GI) symptomatology is common in patients receiving palliative care. Many patients have described the constant nausea, vomiting, and diarrhea as more disabling and disturbing than pain. Anorexia and subsequent cachexia are common in patients at the end of life with multiple potential and often overlapping causes. GI symptoms affect patients’ activities of daily living and influence their quality of life. Other common GI symptoms in palliative care patients include dysphagia, constipation and bowel obstructions, hiccups, and xerostomia. All of the GI symptoms may be related to the pathology of the diseases as well as treatments. Having an understanding of both is crucial for the nurse caring for patients in this setting. As in all palliative care, ongoing assessment of the patient is necessary to determine what interventions are working and which need modification. Interventions include pharmacological, nonpharmacological, and complementary therapies.
This chapter discusses several common skin problems including skin tears, pressure injuries formerly known as pressure ulcers, skin tumors, treatment-related skin injuries, peristomal skin, and fistulas. Skin changes, including pressure injuries, are common occurrences during the dying process. The Wound Bed Preparation 2015 model can be used as a clinician guide to develop a care plan for a palliative care patient with an alteration in skin integrity. Focusing on the wound etiology and classifying wounds as healable, maintenance, or palliative (non-healable) can provide realistic expectations for patients, their family unit, and caregivers as well as the healthcare professional team. Wound care should be aimed at improving the patient’s quality of life by providing comfort, relieving pain, controlling odor, and containing exudate. It is paramount that the patient’s preference be prioritized in the decision-making process and the implementation of realistic treatment care plans.
Chronic liver disease and cirrhosis are the 12th leading causes of death in the United States. There are many chronic liver diseases that lead to cirrhosis, such as viral hepatitis, autoimmune hepatitis, primary biliary cholangitis, primary sclerosing cholangitis, nonalcoholic steatohepatitis, alcohol, some toxins, and inborn errors of metabolism. Liver cancer is one of the fastest growing cancers in the world. Patients with end-stage liver disease (ESLD) present with malnutrition, muscle wasting, hyperlipidemia, fatigue, jaundice, and renal disease. Nurses need to be aware of the pathophysiology and etiologies of liver disease. Nurses need to explore and acknowledge their assumptions and biases about patients with liver disease and their families. Nurses play a pivotal role in advocating for advance care planning and early palliative care for patients with ESLD and their families. Patients with liver disease benefit from physical, psychosocial, and spiritual interventions offered through palliative care.
This chapter focus is on sexual health. Sexual health is a broad concept made up of multiple facets such as sexual desire, self as a sexual being, sexual orientation, sexual lifestyles, and relationships. Intimacy, closeness, communication, and emotional support affect all facets of sexuality. Sexual health within the context of palliative care may be directly impacted by the disease on anatomical structures. However, direct anatomical effect is not the only concern; changes in a person’s sexual interest or desire may also be affected by direct or indirect consequences of medical treatment or in association with being terminally ill. Illness involving sexual organs increases the likelihood of retraumatization for those who have experienced previous sexual trauma. Healthcare practitioners (HCPs) frequently avoid talking about sexuality with cancer patients. HCPs’ barriers to discussing sexuality include embarrassment, misinformed beliefs and assumptions, lack of knowledge, inadequate communication skills, and time constraints.
The principles of hospice care embrace holistic patient- and family-centered care, offered by an interprofessional team of practitioners. Built on the foundation of hospice care, palliative care (PC) addresses care of the mind, body, and spirit as health practitioners develop the most effective and appropriate plan of care for and with patients and families experiencing serious, life-threatening, progressive, or chronic illnesses. As a new paradigm of healthcare, PC is responsive to the need for healthcare reform in America and globally. This chapter presents an exemplary palliative care action plan developed in the state of Maryland. In both generalist and specialist roles in palliative and hospice care, nurses are leaders of healthcare reform in the United States as they combine knowledge, experience, and commitment to advancing the specialty and promoting quality palliative and end-of-life care. The chapter discusses the roles of advanced practice palliative care nurses.