For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life. Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes. Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

To explore the current and future state of serious illness care research, the National Academies Roundtable on Quality Care for People with Serious Illness hosted a public workshop in November 2023. Speakers identified research gaps and challenges and explored strategies and opportunities to further develop the evidence base to improve care for all those living with serious illness, their families, and care partners.

A growing body of research indicates that social determinants of health have a significant impact on health care utilization and outcomes. Researchers and policymakers in the United States have spent decades exploring and discussing approaches to integrating health care and social services. While no nation has a truly integrated system, many other industrialized nations invest more heavily in social services than the United States, and are more effective in integrating these services with health care. Integrating health care and social services, such as accessible housing, meals and nutrition services, transportation, and caregiver training, is particularly important for those facing serious illness who typically encounter multiple chronic conditions, pain and other symptoms, functional dependency, frailty, and significant family caregiver needs. In an effort to better understand and facilitate discussions about the challenges and opportunities related to integrating health care and social services for people with serious illness, the National Academies of Sciences, Engineering, and Medicine held a full-day public workshop on July 19, 2018 in Washington, DC. The workshop featured a broad range of experts and stakeholders including researchers, policy analysts, patient and family caregiving advocates, and representatives of federal agencies. This publication summarizes the presentations and discussions from the workshop.

The United States faces a significantly aging population as well as a growing share of the population that is living longer with multiple chronic conditions. To provide high-quality care to people of all ages living with serious illness, it is critical that the nation develop an adequately trained and prepared workforce consisting of a range of professionals, including physicians, nurses, social workers, direct care workers, and chaplains. To explore some of the key workforce-related challenges to meeting the needs of people with serious illness, the National Academies of Sciences, Engineering, and Medicine hosted a workshop on November 7, 2019. This publication summarizes the presentations and discussions from the workshop.

Millions of Americans of all ages face the challenge of living with serious illnesses such as advanced cancer, heart, or lung disease. Many people with serious illness are increasingly cared for in community settings. While the number of community-based programs to provide care for those with serious illness has grown significantly, the quality of care provided is not consistent across geographic locations or care settings. Care for the serious illness population often features gaps in coordination across sites of care and poor patient and family perceptions as to the quality of care provided. In an effort to better understand and facilitate discussions about the challenges and opportunities related to identifying and implementing quality measures for accountability purposes in community-based serious illness care, the National Academies of Sciences, Engineering, and Medicine held a public workshop on April 17, 2018, in Washington, DC. Workshop participants explored the current state of quality measurement for people with serious illness, their families, and caregivers, with the aim of identifying next steps toward effectively implementing measures to drive improvement in the quality of community-based care for those facing serious illness. This publication summarizes the presentations and discussions from the workshop.

Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform provides an introduction to the principles of palliative care; describes current models of delivering palliative care across care settings, and examines opportunities in the setting of healthcare policy reform for palliative care to improve outcomes for patients, families and healthcare institutions. The United States is currently facing a crisis in health care marked by unsustainable spending and quality that is poor relative to international benchmarks. Yet this is also a critical time of opportunity. Because of its focus on quality of care, the Affordable Care Act is poised to expand access to palliative care services for the sickest, most vulnerable, and therefore most costly, 5% of patients- a small group who nonetheless drive about 50% of all healthcare spending. Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis or stage of illness. The goal is to improve quality of life for both the patient and the family. Research has demonstrated palliative care’s positive impact on health care value. Patients (and family caregivers) receiving palliative care experience improved quality of life, better symptom management, lower rates of depression and anxiety, and improved survival. Because patient and family needs are met, crises are prevented, thereby directly reducing need for emergency department and hospital use and their associated costs. An epiphenomenon of better quality of care, the lower costs associated with palliative care have been observed in multiple studies. Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, a roadmap for effective policy and program design, brings together expert clinicians, researchers and policy leaders, who tackle key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value.