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Integrating the Patient and Caregiver Voice into Serious Illness Care
Millions of peopleâ€"infants, children, adults, and their familiesâ€"are currently coping with serious illness in the United States. Efforts are intensifying to improve overall care quality through the delivery of person-centered and family-oriented services, for patients of all ages and across disease stages, care settings, and specialties. While aging Baby Boomers are increasing the proportion of patients in the Medicare population over time, the sickest and most vulnerable patients needing health system support and other services to meet their complex needs can be found across the age spectrum and in a broad range of care settings, from perinatal care to geriatric care. Recognizing ...
Caring for People with Serious Illness: Lessons Learned from the Covid-19 Pandemic: Proceedings of a Workshop
The COVID-19 pandemic has highlighted existing weaknesses in the United States health care system, while creating a new set of challenges related to caring for people with serious illness. The National Academy of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a three-part workshop to explore the initial responses to the pandemic by health care teams providing care to people with serious illness, the impact of the pandemic on the health care workforce, the use of telehealth, issues related to clearly communicating with the public about health emergencies, and policy opportunities to improve care for people with serious illness. Issues related to health equity were discussed throughout the three webinars.
Building the Workforce We Need to Care for People with Serious Illness
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.
Models and Strategies to Integrate Palliative Care Principles into Care for People with Serious Illness
Palliative care is the interdisciplinary specialty focused on improving quality of life for people with serious illness and their families. This interdisciplinary care is provided by doctors, nurses, social workers, chaplains and others who work together with the patient's other doctors to provide an extra layer of support. Such care is appropriate for people at any age and at any stage in a serious illness, and can be provided together with curative treatment to address clinical, emotional, psychosocial and spiritual concerns of the patient and their family. To better understand how the principles of palliative care can be integrated into the overall provision of care and services to those facing serious illness, the Roundtable on Quality Care for People with Serious Illness held a public workshop in April 2017. This publication summarizes the presentations and discussions from the workshop.
Implementing Quality Measures for Accountability in Community-Based Care for People with Serious Illness
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...
Integrating Health Care and Social Services for People with Serious Illness
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...
Improving Access to and Equity of Care for People with Serious Illness
The Centers for Disease Control and Prevention estimates that approximately 40 million people in the United States suffer from a serious illness that limits their daily activities. These illnesses include heart and lung disease, cancer, diabetes, and Alzheimer's disease and other forms of dementia. However, significant disparities exist across different communities in the quality and access to care for these illnesses. Factors such as race, ethnicity, gender, geography, socioeconomic status, or insurance status exacerbate these complex disparities. It is critical to reevaluate the current models of care delivery across diverse communities and vulnerable populations. On April 4, 2019, The National Academies of Sciences, Engineering, and Medicine convened a workshop to investigate barriers, policy initiatives, and opportunities for improving access to and equity of care for people living with a serious illness. Discussions explored the current climate of health care and opportunities to improve access to care using organizational, community, patient and family, and clinician perspectives. This publication summarizes the discussions and presentations from the workshop.
Supporting and Sustaining the Current and Future Workforce to Care for People with Serious Illness
There are significant challenges facing the workforce needed to provide high-quality care to increasing numbers of people living with serious illness. The National Academies Roundtable on Quality Care for People with Serious Illness hosted a hybrid public workshop in April 2023 to explore strategies and approaches to address major workforce challenges, such as health professional well-being; workforce shortages; workforce training and retention; as well as how to advance the diversity, equity, and inclusion of the workforce caring for people of all ages and all stages of serious illness. This workshop builds on the 2019 Roundtable workshop Building the Workforce We Need to Care for People with Serious Illness.
Financing and Payment Strategies to Support High-Quality Care for People with Serious Illness
Millions of people in the United States live with serious illnesses such as cancer, heart disease, chronic obstructive pulmonary disorder (COPD), amyotrophic lateral sclerosis, Parkinson's disease, and dementiaâ€"often for many years. Those facing serious illness have a range of interconnected medical and non-medical needs, and the way their care is financed has a large impact on the care they receive. Medicare is the predominant payer, but both Medicaid and private payers also play significant roles in financing care for serious illness. In an effort to address the complex needs of people with serious illness, public and private health care payers are testing innovative financing strateg...
The Challenges and Opportunities of Advance Care Planning
Advance Care Planning(ACP)has long been a staple of caring for people with serious illness. Over its history, it has been defined in different ways. Clinicians, researchers, patients, and the public have developed a variety of perspectives about the many aspects of ACP, ranging from the definition to the timing, goals, outcomes, and value of ACP. To better understand the challenges and opportunities for ACP, acknowledge and highlight divergent viewpoints, and examine what is empirically known and not known about ACP and its outcomes, the National Academies of Sciences, Engineering, and Medicine's Roundtable on Quality Care for People with Serious Illness hosted a virtual public workshop, Advance Care Planning: Challenges and Opportunities, on October 26 and November 2, 2020. The workshop explored the paradox of ACP, its evidence base, ways to think differently about ACP, and various approaches to making it more effective.This Proceedings of a Workshop summarizes the presentations and discussions from that workshop.
