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What Are the Palliative Care Needs of LGBTQ+ People?

Introduction and Scope of the Problem Lesbian, Gay, Bisexual, Transgender, and Queer, commonly known as LGBTQ+, are terms used to describe sexual orientation and gender identity (SOGI). According to a 2017 Gallup survey, roughly 11 million Americans (4.5% of the U.S. population) identify as LGBTQ+. Furthermore, an estimated 1.5 million of these adults are over the age of 65, a number that is expected to double…

What Are the Racial and Ethnic Health Disparities That Exist in Palliative Care?

Introduction and Scope of the Problem Racial and ethnic health disparities exist within health care systems in relation to access to care, receipt of care, and quality of care ( Fig. 76.1 ). Given unequal access to health systems and inherent systemic racism, many minority patients seek care later in a disease trajectory, receive more aggressive care, and often have increased morbidity. This is especially true…

What Are Sources of Spiritual and Existential Suffering for Patients With Advanced Illness?

Introduction and Scope of the Problem For all of the rightful concern in health care about the lack of attention to physical and emotional pain, spiritual and existential suffering may be the most universal and underrecognized component of the disease process. Sociologist Arthur Frank writes about his experience with heart disease and cancer: “From the perspective of the ill person, the root issue is suffering.” Dr.…

What Are National Strategies and Frameworks for Palliative Care?

Introduction and Scope of the Problem In 2014, the World Health Organization (WHO) called on members to develop and implement policies to ensure evidence-based, effective, and equitable palliative care is integrated into national health services as an element of the continuum of care. Yet palliative care remains inaccessible to most. Per a 2019 WHO global survey, palliative care is reported as being available to about 50%…

What Models Exist to Deliver Palliative Care via Telemedicine?

Introduction Definition of Telehealth and Telemedicine Telehealth is the use of technology to support a broad range of health care services, including smartphone applications, online patient and clinician education initiatives, and clinical care delivered by providers to patients using a real-time audio or audio-visual platform. When clinicians provide care to patients on an audio or audio-visual platform, this part of telehealth is called telemedicine. This chapter…

How Is Palliative Care Best Integrated Into Surgical Services?

Introduction and Scope of the Problem In 2005, the American College of Surgeons (ACS) recognized the need to provide seriously ill surgical patients with palliative care concurrent to routine surgical care. The ACS emphasized that palliative care is not synonymous with end-of-life care and should be delivered to patients throughout all phases of treatment. In recent years, the palliative care needs of surgical patients have gained…

What Are the Models for Delivering Palliative Care in Rural Areas?

Introduction and Scope of the Problem Palliative care and hospice services have evolved and matured mostly in urban areas alongside robust health infrastructures, with highly trained specialists and teams and other needed resources. Yet, nearly half of the world’s population resides in rural locales and experiences marked health disparities. Rural areas, geographically isolated with large distances between established communities, often have small populations and struggle to…

What Are the Models for Delivering Palliative Care in the Home?

Introduction and Scope of the Problem By 2030, an estimated 73.1 million people in the United States, 21% of the population, will be over the age of 65. By 2034, older adults will outnumber children for the first time in U.S. history. As the population ages, the number of people living with multiple chronic conditions and serious illness continues to rise and places a growing burden…

What Are the Models for Delivering Palliative Care in the Ambulatory Practice Setting?

Introduction and Scope of the Problem Ambulatory palliative care is palliative care provided to outpatients in clinic settings. In these models of care, patients may come to a designated palliative care clinic, or palliative care clinicians may colocate or be embedded in a primary care or specialty practice (e.g., an oncology or cardiology clinic). Considering that patients with serious illness spend most of their time outside…

What Models Exist for Delivering Palliative Care and Hospice in Nursing Homes?

Introduction and Scope of the Problem Nursing homes, considered for this chapter to be synonymous with skilled nursing facilities, exist to support people with some combination of complex medical illness and functional and/or cognitive disabilities. While people most commonly enter a nursing home after hospital discharge with a plan for short-term rehabilitation services, the majority of residents are there for long-term supportive care services. These include…

What Are Models for Delivering Palliative Care in Hospitals?

Introduction and Scope of the Problem Now and for the foreseeable future, hospitals remain at the center of health care in mid- to high-income nations. In the Organisation for Economic Co-operation and Development (OECD) countries, 28% of all health care dollars are spent on inpatient services. In the United States this number is 33%. Whereas the proportion of people dying in hospitals in the United States…

What Is Prolonged Grief Disorder and How Can Its Likelihood Be Reduced?

Introduction and Scope of the Problem Grief is a strong and sometimes overwhelming emotion. Grief is the normal reaction to loss and a universal human experience—individual and personal—creating a unique combination of emotional, psychosocial, physical, spiritual, and existential responses. Grief is not a disorder; however, grieving symptoms can become chronically disabling and distressing for a minority of people. Multiple terms have been used to refer to…

What Can Be Done to Improve Outcomes for Caregivers of People With Serious Illness?

Introduction and Scope of the Problem Caregivers provide on a daily basis assistance with one or more activities of daily living for a person who is older, sick, or disabled. Care recipients are people with serious illnesses who have difficulty managing activities of daily living without assistance. Informal caregivers are family members (e.g., spouses, adult children) or friends who provide unpaid assistance with such activities as…

How Does Serious Illness Impact Family Caregivers?

Introduction and Scope of the Problem Caregivers play a key role in supporting both individuals living with serious illness and those at the end of life. People are living longer with serious illness and multiple chronic illnesses: of every 10 deaths worldwide and in the United States, 7 occur at the end of chronic illness. In the setting of prolonged serious illness, physical and functional abilities…

What Are the Arguments That Show That Outpatient Palliative Care Is Beneficial to Medical Systems?

Introduction Much of the initial growth of palliative care in the United States has been driven by the value to hospitals of the care provided by inpatient palliative care consultation teams. While the financial case for outpatient palliative care is less well developed, evidence indicates that outpatient palliative care offers medical and insurance systems numerous potential clinical and financial benefits in caring efficiently for people with…

What Are the Arguments That Show That Palliative Care Is Beneficial to Hospitals?

Introduction and Scope of the Problem The case for financial support by hospitals of palliative care programs is linked to the quality of care provided, the quantity of patients receiving care, and the extent to which services improve care outcomes. Demonstrating value requires skillful alignment of services with organizational priorities. People receiving palliative care are also more likely to receive care from multiple specialists, across settings,…

What Framework Can Be Used to Address Uncontrolled Symptoms at the End of Life?

Introduction and Scope of the Problem Emergencies in palliative care are infrequent, unpredictable, often lack a formal definition, and can have lasting effects on patients, families, and medical staff. In general, evidence for interventions in emergencies is low quality due to an inability to rigorously study these events in the usual randomized fashion. In the absence of evidence-based guidelines, this chapter proposes that clinicians plan for…

What Are the Signs, Symptoms, and Treatments of Spinal Cord Compression?

Introduction and Scope of the Problem Malignant spinal cord compression occurs in 2.5% to 5% of patients with cancer in the last 5 years of life. It presents as the initial manifestation of malignancy in up to 20% of new cancer diagnoses. The cumulative incidence varies by cancer type and is likely to continue to increase with improved cancer survival rates. Systemic cancers more likely to…

What Are Special Considerations for Patients With Cystic Fibrosis?

Introduction and Scope of the Problem Cystic fibrosis (CF), one of the most common life-limiting genetic disorders, affects more than 70,000 individuals worldwide and their families. Although most prevalent among those of Caucasian descent, CF affects people of all races and ethnicities. While CF has traditionally been conceptualized as a disease of childhood and young adulthood, advances in therapies have approximately doubled the median predicted survival…

What Are Special Considerations for Perinatal Palliative Care?

Perinatal palliative care and perinatal hospice work is a unique facet of care of the maternal–fetal dyad and of brand-new families. These parents have rarely had relevant life experiences to prepare them for the possibility that their infant may die before or after birth. Providing seamless care to families during these transitions requires intentional collaboration with clinicians who typically do not work in the pediatric space—obstetricians,…