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 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.

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.

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.

A practical guide for understanding how palliative care can improve quality of life for patients and their caregivers. Robin Bennett Kanarek was a registered nurse working with patients suffering from chronic medical conditions when her ten-year-old son was diagnosed with leukemia. As her son endured grueling treatments, Robin realized how often medical professionals overlook critical psychological, emotional, and spiritual support for people with life-threatening illnesses. Living Well with a Serious Illness is the culmination of decades of Robin's work to advance the field of palliative care. Although palliative care is often associated with hospice and end-of-life planning, Kanarek argues for a more expanded definition that incorporates palliative care earlier in patients' journeys. Living Well with a Serious Illness helps patients and their caregivers understand • what palliative care entails • how to access the support they need when going through a serious illness • what questions to ask medical professionals • how to navigate advanced care planning • definitions of common terminology used with end-of-life planning • the importance of spiritual care, coping strategies, and emotional support • how to become an advocate for palliative care This book illuminates the importance of seeing patients as individuals who can benefit from care for their body, mind, and spirit—the core tenet of palliative care.

Handbook of Aging and the Social Sciences, Ninth Edition, provides a comprehensive synthesis of the latest research findings in the science of aging. The complexities of population dynamics, cohort succession and policy changes modify the world and its inhabitants in ways that must be vigilantly monitored. Completely revised, this edition not only includes the foundational, classic themes of aging research, but also a rich array of emerging topics and perspectives that advance the field in exciting ways. New topics include families, immigration, social factors and cognition, caregiving, neighborhoods and built environments, natural disasters, religion and health, and sexual behavior, among others. This book will serve as a useful resource and an inspiration to those searching for ways to contribute to the aging enterprise. Includes aging topics at both the micro- and macro-level Addresses the intersection of individual and aggregate factors Covers a spectrum of disciplines, including demography, economics, epidemiology, gerontology, political science, psychology, social work, sociology and statistics Brings together the work of almost fifty leading scholars to provide a deeper understanding of aging

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.

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.