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How Are Children With Developmental Diseases and Delays Best Managed in Palliative Care?

Introduction and Scope of the Problem Among children with serious illness, those with developmental disabilities represent a large cohort whose care requires special consideration. Developmental abilities are traditionally assessed for all children in four primary categories: gross motor, fine motor, language, and social Global developmental delay (GDD) refers to children who have delays in two or more of the four developmental domains in early childhood (age…

What Are Special Considerations for Dosing Medications in Pediatric Populations?

Introduction and Scope of the Problem Dosing palliative care medications for pediatric populations is an evolving methodology that continues to change and adapt with improved pharmacokinetic and pharmacodynamic knowledge. It is well understood that children and adolescents should not be treated as “little adults” and informed adjustments are needed for medications. While evidence remains insufficient for complete medication management in pediatric populations, improved dosing recommendations have…

What Are Special Considerations for Pediatric Palliative Care?

Introduction and Scope of the Problem Care for children with serious illness and their families is an essential part of palliative care. Often children with serious illness have chronic or life-limiting medical conditions with complex symptom management and communication needs. Many children with serious illness have treatment plans that involve a broad array of pediatric specialists and blended goals of care focused on both cure and…

What Are Multimorbidity and Frailty and How Do They Affect the Care of Older Adults?

Acknowledgments We would like to thank Suzy Goldhirsch, MA, MsEd, for contributions to editing and reviewing the text. Introduction and Scope of the Problem Multimorbidity and frailty are two concepts utilized increasingly by clinicians to evaluate the risk profile of older adults in order to guide clinical decisions or treatment interventions. While these two terms are sometimes used interchangeably, their underlying conceptual frameworks and operational definitions…

What Are the Special Needs of Older Adults With Serious Illness?

Introduction and Scope of the Problem The U.S. population of “older adults,” generally defined as those aged 65 years or older, increased by 35% from 2008 to 2018. By 2040, it is projected that this number will increase to 80.8 million. Most older adults have at least one chronic condition, with hypertension and arthritis being among the most common. One-third of older adults reported a disability…

What Special Considerations Are Needed for Patients With Advanced Lung Disease?

Introduction and Scope of the Problem Over 15 million Americans live with serious respiratory illnesses such as chronic obstructive pulmonary disease (COPD) and idiopathic pulmonary fibrosis (IPF). They suffer from progressively debilitating physical and emotional symptoms and an unpredictable illness trajectory punctuated by acute exacerbations that lead to diminished well-being and frequently a chaotic end of life. Palliative care, whether through integration of specialist interprofessional teams…

What Are Palliative Alternatives to Renal Replacement Therapy for People With Advanced Kidney Failure?

Introduction and Scope of the Problem Questioning which patients with end-stage kidney disease should be offered dialysis dates to the early 1960s, when dialysis was first invented. At that time, ethical considerations pertained to the distribution of limited dialysis-related resources. However, for the past many decades, the near-universal availability of dialysis in high-income countries has allowed nephrologists to prescribe it for every patient in whom it…

What Special Considerations Are Needed in Treating Symptoms in Patients With End-Stage Renal Disease, and How Should Patients Who Stop Dialysis Be Managed?

Introduction and Scope of the Problem Some degree of reduced kidney function is common in both the general population and people with have other serious illnesses. Chronic kidney disease (CKD), defined as the presence of either kidney damage or decreased kidney function for at least 3 months, regardless of cause, is present in over 10% of the population worldwide. Loss of kidney function, as manifested through…

What Special Considerations Are Needed in Patients With Head and Neck Cancer?

Introduction and Scope of the Problem The term head and neck cancer (HNC) encompasses a diverse group of cancers that includes cancers of the skin, oral cavity, larynx, skull base, trachea, jaw, thyroid, and sinuses. Based on data from the national Surveillance Epidemiology and End Results (SEER) database from 2013 to 2017, the median age at diagnosis is 63 years, and this group of cancers is…

What Is Chronic Critical Illness and What Outcomes Can Be Expected

Introduction and Scope of the Problem Since the evolution of the modern intensive care unit in the 1940s, clinicians have recognized that there is a group of patients that survives the acute phase of their critical illness yet has persistent organ failure and need for prolonged life-sustaining therapies. During the past few years, a number of evolving trends in clinical care and health policy have brought…

What Is the Clinical Course of Advanced Heart Failure and How Do Implanted Cardiac Devices Alter This Course?

Introduction and Scope of the Problem Heart failure is a chronic and progressive illness frequently associated with multiple comorbidities and is a leading cause of death in the United States. The illness is reaching epidemic numbers: an estimated 6.2 million people have heart failure, with the incidence approaching 21 per 1,000 adults over the age of 65. Data from 2016 indicate that heart failure is implicated…

What Special Considerations Are Needed for Individuals with Amyotrophic Lateral Sclerosis, Parkinson’s Disease, and Multiple Sclerosis?

Introduction and Scope of the Problem Neurodegenerative diseases affect adults of all ages and are associated with complex physical and neuropsychiatric symptoms, progressive functional impairments, and high levels of personal and caregiver suffering. Although amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), and Parkinson’s disease (PD) are distinct disease entities varying in prevalence and disease trajectories, they share numerous characteristics and care needs. All are associated with…

What Is the Role of Palliative Care in Stroke?

Introduction and Scope of the Problem Every year in the United States, approximately 795,000 people experience a stroke, meaning someone has a stroke approximately every 40 seconds. Of all strokes, the majority (87%) are ischemic, with 10% due to intracerebral hemorrhage and the remaining 3% due to subarachnoid hemorrhage. Although in recent years stroke has fallen from the third to the fifth leading cause of death…

What Do We Know About the Symptoms and Palliative Care Needs of People Affected by Liver Disease?

Introduction and Scope of the Problem Worldwide, chronic liver disease (CLD), including cirrhosis and hepatocellular carcinoma (HCC), leads to approximately 2 million deaths annually. The major causes of CLD include viral hepatitis, alcohol-associated liver disease, nonalcoholic fatty liver disease, and autoimmune disorders, and are discussed in detail in Chapter 43 . CLD is a major cause of patient disability, and this population experiences extensive health care…

What Are the Causes and Complications of Chronic Liver Disease and What Is the Evidence for Palliative Care Delivery to Those Affected by It?

Introduction and Scope of the Problem Chronic liver disease (CLD) refers to a spectrum of hepatic conditions, including those that lead to reduced liver function, such as cirrhosis, and primary malignancies affecting the hepatobiliary system, most commonly hepatocellular carcinoma (HCC). This chapter focuses on cirrhosis. Though cirrhosis only affects less than 1% of the US population, it is a leading cause of mortality in the United…

What Are Appropriate Palliative Interventions for Patients With Advanced Dementia?

Introduction and Scope of the Problem A growing body of literature shows that individuals with dementia receive suboptimal palliative care. Symptoms such as pain, dyspnea, and agitation are common, occurring in 40% to 50% of patients with advanced dementia. These symptoms become more common as dementia progresses and death nears. Burdensome interventions, such as hospitalizations, are commonly seen in the last months of life. Those individuals…

What Is the Clinical Course of Advanced Dementia?

Introduction and Scope of the Problem Dementia is a clinical syndrome associated with significant changes in cognition, behavior, and functional status. It is characterized by the development of multiple cognitive and behavioral impairments involving at least two of the following domains: (1) memory, (2) executive function (reasoning, planning, judgment), (3) visuospatial ability, (4) language, (5) and personality or behavior. Importantly, the decline in cognitive abilities must…

What Is the Clinical Course of Pediatric Cancers?

Introduction and Scope of the Problem Children rarely develop the cancers that predominate in high-income countries in adulthood, including breast cancer, lung cancer, prostate cancer, and colon cancer. Instead, children develop leukemias, lymphomas, brain tumors, and extracranial solid tumors arising from muscle, neural tissue, bone, or internal organs. Approximately 16,000 children are diagnosed with cancer annually in the United States (U.S.), accounting for ~1% of all…

What Is the Role for Palliative Care in Children With Cancer?

Introduction and Scope of the Problem Children with cancer and their families face sudden and profound life changes brought on by the diagnosis of a serious illness. Cancer remains one of the most life-threatening childhood illnesses. Children with cancer and their families face high symptom burdens, pervasive uncertainty, and the possibility of death or long-term poor health from cancer or complications of cancer treatment. Childhood cancer…

What Is the Clinical Course of Hematologic Malignancies?

Introduction and Scope of the Problem The hematologic malignancies consist of a broad group of disorders comprising approximately 10% of new cancer diagnoses each year in the United States. Patients with hematological malignancies experience widely varying clinical trajectories, prognoses, and treatment intensities. Some patients, with chronic or more indolent diseases characteristics may have no symptoms from their disease and can be managed with observation alone. Others,…