Palliative care is medical care focused on improving quality of life for people living with serious illness. Serious illness is defined as “a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments or caregiver stress.” Palliative care addresses and treats symptoms, supports patients’ families and loved ones, and through clear communication helps ensure that care aligns with patients’ preferences, values, and goals. Near the end of life, palliative care may become the sole focus of care, but palliative care alongside cure-focused treatment or disease management is beneficial throughout the course of a serious illness, regardless of its prognosis.
Palliative care includes management of physical symptoms, such as pain, dyspnea, nausea and vomiting, constipation, delirium, and agitation; emotional distress, such as depression, anxiety, and interpersonal strain; and existential distress, such as spiritual crisis. While palliative care is a medical subspecialty recognized by the American Board of Medical Specialties and governing bodies around the world (“specialty palliative care”) and is typically provided by an interdisciplinary team of experts, all clinicians should have the skills to provide “generalist” or “primary palliative care” including managing pain; treating dyspnea; identifying mood disorders; communicating about prognosis and patient preferences for care; and helping address spiritual distress. The fourth edition of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care emphasizes that palliative care is the responsibility of all clinicians and disciplines caring for people with serious illness, in all health care settings (including hospitals, primary care and specialty clinics, nursing homes, and the community). Advanced certification in palliative care for health care organizations is offered by The Joint Commission, and the World Health Organization has called for the integration of palliative care services into the structure and financing of national health care systems.
The scope of primary palliative care and the ideal timing to begin specialty palliative care for patients with different illnesses is an evolving area of practice.
During any stage of illness, patients should be screened routinely for symptoms. Any symptoms that cause significant suffering are a medical emergency that should be managed aggressively with frequent elicitation and reassessment as well as individualized treatment. While patients at the end of life may experience a host of distressing symptoms, pain, dyspnea, and delirium are among the most feared and burdensome. Management of these common symptoms is described later in this chapter.
The principles of palliative care dictate that properly informed patients or their surrogates may decide to pursue aggressive symptom relief at the end of life even if, as a known but unintended consequence, the treatments hasten death. The ethical principle of “double effect” argues that the potential to hasten imminent death is acceptable if it comes as the known but unintended consequence of a primary intention to provide comfort and relieve suffering. Randomized studies have shown that palliative care provided alongside disease-focused treatment can ...