National Academies of Sciences, Engineering, and Medicine

Board on Health Care Services

Board on Health Sciences Policy

Health and Medicine Division

Roundtable on Quality Care 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 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.

Proceedings of a Workshop

Integrating Health Care and Social Services 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 strategies and alternative payment models. These innovative approaches signal a gradual transition from the traditional-fee-for-service system that pays providers based on the quantity of services to a system based on the value of care provided and a heightened focus on improved quality of care at lower cost. To explore this evolving financing and payment landscape for serious illness care within public- and private-sector programs, the Roundtable on Quality Care for People with Serious Illness developed a workshop, Financing and Payment Strategies to Support High-Quality Care for People with Serious Illness. The workshop convened clinicians, researchers, policy analysts, and patient advocates, as well as representatives from academia, government and private health care plans, and insurers to discuss challenges and opportunities in financing high-quality care for people with serious illness. This publication summarizes the presentations and discussions from the workshop.

Financing and Payment Strategies to Support High-Quality Care for People with Serious Illness

The United States is facing an opioid use disorder epidemic with opioid overdoses killing 47,000 people in the U.S. in 2017. The past three decades have witnessed a significant increase in the prescribing of opioids for pain, based on the belief that patients were being undertreated for their pain, coupled with a widespread misunderstanding of the addictive properties of opioids. This increase in prescribing of opioids also saw a parallel increase in addiction and overdose. In an effort to address this ongoing epidemic of opioid misuse, policy and regulatory changes have been enacted that have served to limit the availability of prescription opioids for pain management. Overlooked amid the intense focus on efforts to end the opioid use disorder epidemic is the perspective of clinicians who are experiencing a significant amount of daily tension as opioid regulations and restrictions have limited their ability to treat the pain of their patients facing serious illness. Increased public and clinician scrutiny of opioid use has resulted in patients with serious illness facing stigma and other challenges when filling prescriptions for their pain medications or obtaining the prescription in the first place. Thus clinicians, patients, and their families are caught between the responses to the opioid use disorder epidemic and the need to manage pain related to serious illness. The National Academies of Sciences, Engineering, and Medicine sponsored a workshop on November 29, 2018, to examine these unintended consequences of the responses to the opioid use disorder epidemic for patients, families, communities, and clinicians, and to consider potential policy opportunities to address them. This publication summarizes the presentations and discussions from the workshop.

Pain Management for People with Serious Illness in the Context of the Opioid Use Disorder Epidemic

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.

Building the Workforce We Need to 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 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.

Implementing Quality Measures for Accountability in Community-Based 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.

Roundtable on Quality Care for People with Serious Illness

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