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Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Glossary1

Advance care planning: The whole process of discussion of end-of-life care, clarification of related values and goals, and embodiment of preferences through written documents and medical orders. This process can start at any time and be revisited periodically, but it becomes more focused as health status changes. Ideally, these conversations (1) occur with a person’s health care agent and primary clinician, along with other members of the clinical team; (2) are recorded and updated as needed; and (3) allow for flexible decision making in the context of the patient’s current medical situation.

Advance directive: A broad term encompassing several types of patient-initiated documents, especially living wills and documents that name a health care agent. People can complete these forms at any time and in any state of health that allows them to do so.

Basic palliative care: Palliative care that is delivered by health care professionals who are not palliative care specialists, such as primary care clinicians, physicians who are disease-oriented specialists (such as oncologists and cardiologists), and nurses, social workers, pharmacists, chaplains, and others who care for this population but are not certified in palliative care.

Chronic pain: Ongoing or recurrent pain lasting beyond the usual course of acute illness or injury or, generally, more than 3 to 6 months and adversely

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1Glossary terms without a citation are definitions created and derived by the committee.

Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×

affecting the individual’s well-being. A simpler definition for chronic or persistent pain is pain that continues when it should not (American Chronic Pain Association, 2013).

Comparative effectiveness research: The generation and synthesis of evidence to compare the benefits and harms of alternative methods for preventing, diagnosing, treating, and monitoring a clinical condition or improving the delivery of care (IOM, 2009).

Direct care worker: Nursing assistants, home health and home care aides, personal care workers and personal care attendants who provide hands-on care, supervision, and emotional support to people with chronic illnesses and disabilities. These individuals work in a variety of settings, including nursing homes, assisted living and other residential care settings, adult day care, and private homes (Kiefer et al., 2005).

Dual eligibles: Individuals who are jointly enrolled in Medicare and Medicaid, and who are eligible to receive benefits from both programs. All dual-eligible beneficiaries qualify for full Medicare benefits, which cover their acute and postacute care. Dual-eligible beneficiaries vary in the amount of Medicaid benefits for which they qualify (CBO, 2013).

Durable power of attorney for health care: Identifies the person (the health care agent) who should make medical decisions in case of a patient’s incapacity.

End-of-life care: Refers generally to the processes of addressing the medical, social, emotional, and spiritual needs of people who are nearing the end of life. It may include a range of medical and social services, including disease specific interventions as well as palliative and hospice care for those with advanced serious conditions who are near the end of life.

Family: Not only people related by blood or marriage, but also close friends, partners, companions, and others whom patients would want as part of their care team.

Fee-for-service: A payment system in which a health care program or plan pays providers a fee for each covered service performed for its enrollees (CBO, 2013).

Frailty: A clinically recognizable state of increased vulnerability resulting from aging-associated decline in reserve and function across multiple physi-

Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×

ologic systems such that the ability to cope with everyday or acute stressors is compromised (Xue, 2011).

Health care agent: An individual designated in an advance directive who should make medical decisions in case of a patient’s incapacity.

HITECH Act: The Health Information Technology for Economic and Clinical Health (HITECH) Act was enacted under Title XIII of the American Recovery and Reinvestment Act of 2009 and officially established the Office of the National Coordinator for Health Information Technology at the U.S. Department of Health and Human Services. The act includes incentives designed to accelerate the adoption of health information technology by the health care industry, health care providers, consumers, and patients, largely through the promotion of electronic health records and secure electronic health information exchange.2

Hospice: A service delivery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears (NQF, 2006).

Learning health care system: A health care system in which science, informatics, incentives, and culture are aligned for continuous improvement and innovation, with best practices being seamlessly embedded in the care process, patients and families being active participants in all elements of care, and new knowledge being captured as an integral by-product of the care experience (IOM, 2012).

Life-sustaining treatment: Medical procedures that replace or support an essential bodily function. Life-sustaining treatments include cardiopulmonary resuscitation (CPR), mechanical ventilation, artificial nutrition and hydration, dialysis, and certain other treatments (HHS, 2008).

Living will: A written or video statement about the kind of medical care a person does or does not want under certain specific conditions if no longer able to express those wishes.

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2Health Information Technology for Economic and Clinical Health (HITECH) Act, Title XIII of Division A and Title IV of Division B of the American Recovery and Reinvestment Act of 2009 (ARRA), Public Law 111-5, 111th Cong., 1st sess. (February 17, 2009).

Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×

Long-term care: An array of health care, personal care, and social services generally provided over a sustained period of time to people of all ages with chronic conditions and with functional limitations. Their needs are met in a variety of care settings such as nursing homes, residential care facilities, and individual homes (IOM, 2001a).

Meaningful use: The use of certified electronic health record technology in a purposeful manner (such as electronic medication prescribing), ensuring that the technology is connected in a manner that provides for the electronic exchange of health information to improve the quality of care (CDC, 2012).

Medicare hospice benefit: A benefit available under Medicare Part A that allows Medicare beneficiaries who choose hospice care to receive non-curative medical and support services for their terminal illness. To be eligible, beneficiaries must be certified by a physician to be terminally ill with a life expectancy of 6 months or less. Hospice care under Medicare includes both home care and inpatient care, when needed, and a variety of services not otherwise covered by Medicare (CMS, 2013).

Medicare Part A: Also known as the Hospital Insurance program, covers inpatient hospital services and skilled nursing facility, home health, and hospice care (IOM, 2013).

Medicare Part B: Also known as the Supplementary Medical Insurance program, helps pay for physician, outpatient, home health, and preventive services (IOM, 2013).

Medicare Part C (Medicare Advantage Plan): Allows beneficiaries to enroll in a private plan, such as a health maintenance organization, preferred provider organization, or private fee-for-service plan, as an alternative to the traditional fee-for service program. These plans receive payments from Medicare to provide Medicare-covered benefits, including hospital and physician services—and in most cases, prescription drug benefits (IOM, 2013).

Medicare Part D: The outpatient prescription drug benefit, established by the Medicare Modernization Act of 2003 and launched in 2006. The benefit is delivered through private plans that contract with Medicare—either stand-alone prescription drug plans or Medicare Advantage prescription drug plans (IOM, 2013).

Palliative care: Care that provides relief from pain and other symptoms, supports quality of life, and is focused on patients with serious advanced illness and their families. Palliative care may begin early in the course of

Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×

treatment for a serious illness and may be delivered in a number of ways across the continuum of health care settings, including in the home, nursing homes, long-term acute care facilities, acute care hospitals, and outpatient clinics.

Patient-centered care: Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care (IOM, 2001b).

POLST: Physician Orders for Life-Sustaining Treatment, created with and signed by a health professional, usually a physician (in some states a nurse practitioner or physician assistant), for someone who is seriously ill. Because they are actual doctor’s orders, other health professionals, including emergency personnel, are required to follow them. POLST involves a clinical process designed to facilitate communication between health care professionals and patients, their families, their health care agents, or their designated surrogates. The POLST medical orders (forms) cover a range of topics likely to emerge in care of a patient near the end of life relating to that patient’s goals of care and treatment preferences.

Specialty palliative care: Palliative care that is delivered by health care professionals who are palliative care specialists, such as physicians who are board certified in this specialty, palliative-certified nurses, and palliative care–certified social workers, pharmacists, and chaplains.

Spirituality: Refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred (Pulchalski et al., 2009).

Surrogate: A person who, by default, becomes the substitute decision maker for an individual who has no appointed agent (HHS, 2008).

Systems-based approach: An organized, deliberate approach to the identification, assessment, and management of a complex clinical problem; may include checklists, treatment algorithms, provider education, quality improvement initiatives, and changes in delivery and payment models (Weissman and Meier, 2011).

Vulnerable populations: People from ethnic, cultural, and racial minorities, people with low educational attainment or low health literacy, and

Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×

those in prisons or having limited access to care for geographic or financial reasons. Also included are people with serious illnesses, multiple chronic diseases, and disabilities (physical, mental, or cognitive); the frail elderly; those without accesses to needed health services; as well as nearly all people nearing the end of life.

REFERENCES

American Chronic Pain Association. 2013. Glossary. http://www.theacpa.org/Glossary (accessed November 1, 2013).

CBO (Congressional Budget Office). 2013. Dual-eligible beneficiaries of Medicare and Medicaid: Characteristics, health care spending, and evolving policies. CBO publication no. 4374. Washington, DC: U.S. Government Printing Office.

CDC (Centers for Disease Control and Prevention). 2012. Meaningful use: Introduction. http://www.cdc.gov/ehrmeaningfuluse/introduction.html (accessed August 5, 2014).

CMS (Centers for Medicare & Medicaid Services). 2013. Medicare hospice benefits. Baltimore, MD: CMS. http://www.medicare.gov/Pubs/pdf/02154.pdf (accessed August 5, 2014).

HHS (U.S. Department of Health and Human Services). 2008. Advance directives and advance care planning: Report to Congress. http://aspe.hhs.gov/daltcp/reports/2008/adcongrpt.htm (accessed August 7, 2013).

IOM (Institute of Medicine). 2001a. Improving the quality of long-term care. Washington, DC: National Academy Press.

IOM. 2001b. Envisioning the national health care quality report. Washington, DC: National Academy Press.

IOM. 2009. Initial national priorities for comparative effectiveness research. Washington, DC: The National Academies Press.

IOM. 2012. Best care at lower cost: The path to continuously learning health care in America. Washington, DC: The National Academies Press.

IOM. 2013. Variation in health care spending: Target decision making, not geography. Washington, DC: The National Academies Press.

Kiefer, K., L. Harris-Kojetin, D. Brannon, T. Barry, J. Vasey, and M. Lepore. 2005. Measuring long-term care work: A guide to selected instruments to examine direct care worker experiences and outcomes. Washington, DC: Institute for the Future of Aging Services.

NQF (National Quality Forum). 2006. A national framework and preferred practices for palliative and hospice care quality: A consensus report. Washington, DC: NQF.

Puchalski, C., B. Ferrell, R. Virani, S. Otis-Green, P. Baird, J. Bull, H. Chochinov, G. Handzo, H. Nelson-Becker, M. Prince-Paul, K. Pugliese, and D. Sulmasy. 2009. Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine 12(10):885-904.

Weissman, D. E., and D. E. Meier. 2011. Identifying patients in need of a palliative care assessment in the hospital setting: A consensus report from the center to advance palliative care. Journal of Palliative Medicine 14(1):17-23.

Xue, Q. L. 2011. The frailty syndrome: Definition and natural history. Clinics in Geriatric Medicine 27(1):1-15.

Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×
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Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
×
Page 389
Suggested Citation:"Glossary." Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/18748.
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Next: Appendix A: Data Sources and Methods »
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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.

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