Improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system.
“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.”
Dying in America is available as a downloadable .pdf at the National Academies Press Website.
It’s also available at Amazon and other book sellers.
The Institute of Medicine (IOM) committee identifies a need for public education and engagement about end-of-life care planning at several levels:
- the societal level, to build support for public and institutional policies that ensure high-quality, sustainable care;
- the community and family levels, to raise awareness and elevate expectations about care options, the needs of caregivers, and the hallmarks of high-quality care; and
- the individual level, to motivate and facilitate advance care planning and meaningful conversations with family members and caregivers.
“Although Americans’ values and opinions about end-of-life care will necessarily differ, the committee emphasizes the importance of disseminating accurate information so that individual care decisions and public dialogue, as much as possible, are based on an informed understanding of facts.
“The IOM committee believes a person-centered, family-oriented approach that honors individual preferences and promotes quality of life through the end of life should be a national priority.
“Dying in America provides a comprehensive assessment of the knowledge gaps, structural problems, and financial disincentives that hamper delivery of optimal care and makes cross-sectoral recommendations to achieve compassionate, affordable, sustainable, and effective care for all Americans.”