Roundtable on Quality Care for People with Serious Illness – författare

Approximately five percent of Medicare beneficiaries (2.2 million Americans) are living with serious illness, as are many other non-Medicare eligible individuals. This number is expected to grow rapidly as the population ages and the prevalence of progressive illness increases. In many communities, particularly urban and rural underserved communities, primary care clinicians are the main workforce caring for people with serious illness, which underscores the need to integrate high quality serious illness care into primary care delivery.

To better understand the challenges and opportunities for integrating serious illness care into primary care settings, the National Academies of Sciences, Engineering, and Medicine''s Roundtable on Quality Care for People with Serious Illness hosted a virtual workshop on June 10 and 17, 2021. The workshop, titled Integrating Serious Illness Care into Primary Care Delivery, explored the shared principles of primary and serious illness care, the interdisciplinary teams that power both disciplines, the policy issues that can act as barriers to or incentives for integration, and best practices for integrating primary care and serious illness care. This Proceedings of a Workshop summarizes the presentations and discussions that occurred during the workshop.

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.

Millions of people—infants, children, adults, and their families—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 the need to thoughtfully consider and address the challenges and opportunities in efforts to improve care quality and value, the Roundtable on Quality Care for People with Serious Illness of the National Academies of Sciences, Engineering, and Medicine held the public workshop Integrating the Patient and Caregiver Voice into Serious Illness Care, on December 15, 2016, in Washington, DC. This workshop was the first in a series planned by the roundtable, and was designed specifically to bring together diverse personal perspectives and experiences about priorities and values that are important to patients and families coping with serious illness, and to consider solutions that support integration of these priorities and values in practice. This publication summarizes the presentations and discussions from the workshop.

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.

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 dementia—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.

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.

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 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.

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.

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.

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.

The National Academies Roundtable on Quality Care for People with Serious Illness, National Cancer Policy Forum, and Forum on Aging, Disability and Independence hosted a workshop that examined opportunities to better support family caregiving for people with cancer or other serious illnesses. This workshop built upon previous work, including the 2016 consensus report Families Caring for an Aging America. This Proceedings of a Workshop summarizes the discussions held during the workshop, which focused on: strategies to better capture, understand, and act on family caregiver input and experience; research gaps and opportunities to guide caregiving for patients with serious illnesses; potential policy and practice opportunities to advance family-centered care for serious illness; and opportunities to embed a health equity focus across family caregiving research, policy, and practice.

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.

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.