Nursing Education

Educating nursing students, clinicians, faculty, and researchers in palliative care is needed tremendously in this era of an aging population and the development of new technological ways of extending the lives of those with complex illness and/or injury. With new evidence-based resources being developed to enhance education, including guidelines, competencies, videos, standards, and procedures, educators have a plethora of materials to promote and disseminate palliative care education. Nurses, who represent the largest healthcare profession in the nation, can only practice and teach what they know. Because nurses spend more time at the bedside and out in the community consulting and providing care to those who are seriously ill and to their families, it is vital they be educated to provide competent and compassionate care to those who are most vulnerable.

Palliative Care in the Perinatal Setting

The nurse is an essential interdisciplinary partner in the delivery of family- and patient-centered palliative care for families faced with perinatal or newborn loss in the labor and delivery (L&D) unit and in the neonatal intensive care unit (NICU). Early identification and referral of the family to perinatal and neonatal palliative care services is paramount. Improving nursing communication with the family, advocating for the family, and providing supportive nursing care, which includes physical and psychological symptom management, are emphasized. The L&D unit is an area in which patients can experience both joy and loss; it is imperative that L&D nurses receive education about palliative care in the event of maternal complications and/or congenital anomalies that lead to the death of a newborn. Principles of essential individualized, compassionate, and culturally competent palliative care interventions are reviewed using patient and family exemplars.

The Role of PT, OT, and Other Therapies in Palliative Care for Seriously Ill Patients

This chapter describes the roles of physical therapy, occupational therapy, speech language pathology, and recreation therapy in providing rehabilitation for patients receiving palliative care. Palliative rehabilitation should be included as part of a comprehensive interdisciplinary effort to support patients who experience functional impairments or symptoms that impact daily life and that result from terminal illness. Palliative rehabilitation focuses on creating collaborative goals that address disability and easing symptom burden to maximize or maintain function throughout every stage of disease. Patients receiving the appropriate rehabilitative interventions can adapt to the changes and foster an optimal quality of life. Nurses collaborate with the rehabilitation team so that patients and their caregivers can achieve a greater benefit from their palliative care.

Rural Palliative Care

Access to palliative care remains challenging to those living in rural areas across the globe. This disparity of care leaves many without critically important palliative care services across their illness trajectory, especially in its final stages. Creative strategies to meet the palliative care needs of rural patients such as telehealth, videoconferencing specialists’ consultation, and web-based resources exist. Using these strategies where available can address some palliative care disparities and access to care in rural areas that were previously absent. Developing clinical capacity of rural clinicians through enhanced education in primary palliative care in training programs, expanding services with the use of nurse practitioners, and using palliative care–trained community lay health workers are also strategies to improve access. Additionally, by developing rural hospital providers’ knowledge and skills to provide primary palliative care in tasks such as establishing care goals, communication, and basic symptom control may prevent many transfers to academic centers miles away. Through ongoing education and primary palliative care training and innovations in bringing specialty care to rural areas, “palliative care everywhere” will soon be a reality.

The Role of Nursing in Caring for Patients Receiving Palliative Surgery or Chemotherapy

Surgery and chemotherapy are common treatment modalities used to manage disease and symptoms in palliative settings where the disease is incurable. These treatment modalities can lead to deteriorations in a patient’s quality of life (QOL). The benefits of palliative surgery and chemotherapy should always focus on QOL, symptom control, and symptom prevention. The purpose of this chapter is to provide an overview of the definition of palliative surgery and chemotherapy, describe common indications for surgery and chemotherapy for palliative treatment intent, and discuss the role of nursing in caring for patients who are receiving palliative surgery and chemotherapy.

Improving the Quality of Care across All Settings

This chapter provides perspectives on quality-based initiatives in the United States across healthcare settings and populations and describes their impact on patient, professional, and system outcomes. The authors discuss the need for quality improvement (QI) at end of life, QI principles, and the models, methods, and tools most frequently used. Also described are areas of national priority for improving end-of-life (EOL) care. A care-path for the end of life is used to illustrate a QI effort and the FOCUS_PDSA method and to encourage use of specific tools for improving EOL care, including respiratory distress, and a clinician assessment of EOL care using The Joint Commission (TJC) tracer methodology. The authors review the linkages between QI and practice changes in hospitals and hospices that ultimately lead to improved EOL care and close with examples of how nurses are providing leadership in the field of quality hospice and palliative care.

Palliative Care for People Living with HIV

This chapter discusses the palliative care needs of people living with HIV (PLWH). Now considered a chronic condition, HIV presents specific challenges both for individuals who are long-term survivors and for those adults who are recently diagnosed. The initial diagnosis of a chronic condition can be devastating for anyone, but a diagnosis of HIV may be especially stressful and challenging due to the social stigma and history associated with it. For PLWH whose condition is well-controlled, the development of comorbidities associated with disease characteristics, medication, or the aging process speaks to the need for palliative care throughout the disease trajectory. This chapter focuses on the social context impinging on those needs. It provides palliative care content that can facilitate nurses’ collaborations with patients, as well as with physicians and other healthcare team members who care for adults with HIV.

Complementary and Integrative Therapies in Palliative Care

A large portion of adults in the United States use some form of complementary and integrative medicine, but while these therapies are offered in many hospice and palliative care programs, few patients end up accessing the therapies. Studies show that patients who receive these services are more satisfied with their care. Additionally, surveys show that nurses are often the critical factor is assessing a patient’s appropriateness for integrative care and making the referrals. This chapter reviews therapies and supplements that can be used for specific conditions, and it ends with a list of resources to help put ideas into practice.

Urgent Syndromes at the End of Life

During the end-of-life stage, patients can experience a variety of urgent syndromes that can be treated effectively to reduce pain and improve quality of life. Conditions such as superior vena cava obstruction, pleural effusion, hemoptysis, spinal cord compression, hypercalcemia, and pathological fractures often result from progression across the disease trajectory and are particularly common among patients with advanced cancers. Nursing and medical caregivers must be familiar with these conditions, recognize them when they occur, and provide appropriate education and support for the patient and his or her family in addition to effective medical intervention. Awareness of urgent syndromes that may occur at end of life can help caregivers to provide more effectual palliative care that diminishes distress and suffering for the patient and their family.

Delirium, Confusion, and Agitation

Delirium is a serious and common complication of the medical care of the seriously or terminally ill. Patients present as confused, agitated, abstracted, or withdrawn. Delirium, though challenging to diagnose, is important to recognize and treat. Medical complications, length of stay, cost of care, and caregiver burden are all adversely affected by the presence of delirium. The authors review diagnostic issues, including commonly used screening tools. Pharmacological and nonpharmacological interventions are described in detail. Such interventions have been shown to both prevent and effectively treat delirium. Delirium, and the agitation and confusion that can accompany the disorder, is very frustrating for families and caregivers. Nursing management and family interventions are particularly important in the management of this complex disorder.