Pew Glossary: Improving End-of-Life Care

Advance care planning:

The whole process of discussion, choice, and clarification of a patient’s medical values and goals that can start at any time and be revisited periodically, but becomes more focused as health status changes. Ideally, these conversations 1) occur with a person’s health care proxy and physician, 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. (Drawn from Institute of Medicine, 2014)¹

Advance directive:

A broad term encompassing several types of patient-initiated documents, especially living wills and proxy statements. People complete these forms at any time, in any state of health that allows them to do so. (Institute of Medicine, 2014)²

Agent:

An individual designated in a legal document, known as a power of attorney for health care, to make a health care decision for the individual granting the power; also referred to in some statutes as durable power of attorney for health care (DPAHC), attorney in fact, proxy, or health care representative. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)³

Artificial nutrition and hydration:

Artificial nutrition and hydration (or tube feeding) supplements or replaces ordinary eating and drinking by giving nutrients and fluids through a tube placed directly into the stomach (gastrostomy tube or G-tube), the upper intestine, or a vein. (HHS, Assistant Secretary for Planning and Evaluation, HHS, 2008)⁴

Capacity to make a health care decision:

An individual’s ability to understand the significant benefits, risks, and alternatives to proposed health care and to make and communicate a health care decision. The term is frequently used interchangeably with competency, but it is not the same. Competency (or incompetency) is often distinguished as a legal status imposed by a court, although most states have dropped the term in favor of “legal incapacity.” (Drawn from Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)⁵

Cardiopulmonary resuscitation (CPR):

A group of treatments used when a person’s heart and/or breathing stops. CPR is used in an attempt to restart the heart and breathing. It may or may not consist of mouth-to-mouth breathing, or other method of ventilation, and pressing on the chest to cause blood to circulate. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)⁶

Chronic pain:

Ongoing or recurrent pain lasting beyond the usual course of acute illness or injury or, generally, more than three to six months and adversely 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)⁷

Comparative effectiveness research:

The generation and synthesis of evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat, and monitor a clinical condition or to improve the delivery of care. (Institute of Medicine, 2009)⁸

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, Harris-Kojetin et al., 2005)⁹

Do not resuscitate (DNR) order:

A physician’s order written in a patient’s medical record indicating that health care providers should not attempt CPR in the event of cardiac or respiratory arrest. In some regions, this order may be transferable between medical venues. Also called a No CPR order, DNAR (do not attempt resuscitation) order, and an AND (allow natural death) order. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)¹⁰

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 post-acute care. Dual-eligible beneficiaries vary in the amount of Medicaid benefits for which they qualify. (Congressional Budget Office, 2013)¹¹ 

Durable power of attorney for health care:

Identifies the person who should make medical decisions for a person no longer able to do so. (Institute of Medicine, 2014)¹²

End-of-life care:

Health care, including acute care and long-term care, provided to individuals who are very ill, have a prognosis that is likely to worsen, and most likely will die from their illness. (Institute of Medicine, 2014)¹³

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. (Congressional Budget Office, 2013)¹⁴

Frailty:

A clinically recognizable state of increased vulnerability resulting from aging-associated decline in reserve and function across multiple physiological systems such that the ability to cope with everyday or acute stressors is compromised. (Xue, 2011)¹⁵

Guardian:

A judicially appointed guardian or conservator having authority to make a health care decision for an individual. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)¹⁶

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. (National Quality Forum, 2006)¹⁷

Intubation:

A shortened form of the term “endotracheal intubation,” the insertion of a tube through the mouth or nose into the trachea (windpipe) to create and maintain an open airway to assist breathing. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)¹⁸

Life-sustaining treatment:

Medical procedures that replace or support an essential bodily function. Life-sustaining treatments include CPR, mechanical ventilation, artificial nutrition and hydration, dialysis, and certain other treatments. (U.S. Department of Health and Human Services, 2008)¹⁹

Living will:

Written or video statements about the kinds of medical care a person wants (and doesn’t want) under certain specific conditions if he or she becomes unable to express those wishes. (Institute of Medicine, 2014)²⁰

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, or individual homes. (Institute of Medicine, 2001)²¹

Mechanical ventilation:

Treatment in which a mechanical ventilator supports or replaces the function of the lungs. The ventilator is attached to a tube inserted in the nose or mouth and down into the windpipe (or trachea). Mechanical ventilation often is used to assist a person through a short-term problem or for prolonged periods in which irreversible respiratory failure exists due to injuries to the upper spinal cord or a progressive neurological disease. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)²²

Palliative care:

The comprehensive care and management of the physical, psychological, emotional, and spiritual needs of patients of all ages (and their families) with chronic, debilitating, or life-threatening illness. (Center to Advance Palliative Care, 2007)  (Per the National Consensus Project, palliative care must include 8 domains: structure and processes of care; physical aspects of care; psychological and psychiatric aspects of care; social aspects of care; spiritual, religious, and existential aspects of care; cultural aspects of care; care of the imminently dying patient; and ethical and legal aspects of care.)²³

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. (Institute of Medicine, 2001)²⁴

Patient Self-Determination Act:

An amendment to the Omnibus Budget Reconciliation Act of 1990, the law became effective December 1991 and requires most United States hospitals, nursing homes, hospice programs, home health agencies, and health maintenance organizations to give adult individuals, at the time of inpatient admission or enrollment, information about their rights under state laws governing advance directives, including: (1) the right to participate in and direct their own health care decisions, (2) the right to accept or refuse medical or surgical treatment, (3) the right to prepare an advance directive, and (4) information on the provider’s policies governing use of these rights. The act prohibits institutions from discriminating against a patient who does not have an advance directive. The Patient Self-Determination Act further requires institutions to document patient information and provide ongoing community education on advance directives. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)²⁵

POLST:

Physician Orders for Life Sustaining Treatment are created with and signed by a health professional, usually a physician, for someone who is seriously ill. Because they are actual doctor’s orders, they are more likely to be followed by other health professionals, including emergency personnel. (Institute of Medicine, 2014)²⁶

Proxy:

Substitute decision-maker. (Office of the Assistant Secretary for Planning and Evaluation, HHS, 2008)²⁷

Surrogate:

A person who, by default, becomes the substitute decision-maker for an individual who has no appointed agent. (U.S. Department of Health and Human Services, 2008)²⁸

Endnotes

1. Institute of Medicine, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (2014), http://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx.
2. Ibid.
3. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Advance Directives and Advance Care Planning: Report to Congress (2008), http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.pdf.
4. Ibid.
5. Ibid.
6. Ibid.
7. American Chronic Pain Association, “Resource Guide to Chronic Pain Medications & Treatments: Glossary,” http://www.theacpa.org/Glossary.
8. Institute of Medicine, Initial National Priorities for Comparative Effectiveness Research (2009), http://www.iom.edu/Reports/2009/ComparativeEffectivenessResearchPriorities.aspx.
9. Kristen Kiefer et al., Measuring Long-Term Care Work: A Guide to Selected Instruments to Examine Direct Care Worker Experiences and Outcomes (2005), Institute for the Future of Aging Services, U.S. Department of Labor, http://aspe.hhs.gov/daltcp/reports/dcwguide-file.htm.
10. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Advance Directives.
11. Congressional Budget Office, Dual-Eligible Beneficiaries of Medicare and Medicaid: Characteristics, Health Care Spending, and Evolving Policies (2013), https://www.cbo.gov/publication/44308.
12. Institute of Medicine, Dying in America.
13. Ibid.
14. Congressional Budget Office, Dual-Eligible Beneficiaries.
15. Qian-Li Xue, “The Frailty Syndrome: Definition and Natural History,” Clinics in Geriatric Medicine 27, no. 1 (2011): 1–15, http://www.ncbi.nlm.nih.gov/pubmed/21093718.
16. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Advance Directives.
17. National Quality Forum, A National Framework and Preferred Practices for Palliative and Hospice Care Quality: A Consensus Report (2006), http://www.qualityforum.org/ publications/2006/12/A_National_Framework_and_Preferred_Practices_for_Palliative_and_ Hospice_Care_Quality.aspx.
18. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Advance Directives.
19. Ibid.
20. Institute of Medicine, Dying in America.
21. Institute of Medicine, “Improving the Quality of Long-Term Care” (2001), https://www.iom.edu/~/media/Files/Report%20Files/2003/Improving-the-Quality-of-Long-Term-Care/LTC8pagerFINAL.pdf.
22. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Advance Directives.
23. Center to Advance Palliative Care, “Crosswalk of JCAHO Standards and Palliative Care: - Policies, Procedures, and Assessment Tools” (2007), https://www.capc.org/search/?q=JCAHO+Standards (Members Only).
24. Institute of Medicine, Envisioning the National Healthcare Quality Report (2001),  https://www.iom.edu/Reports/2001/Envisioning-the-National-Health-Care-Quality-Report.aspx
25. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Advance Directives.
26. Institute of Medicine, Dying in America.
27. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Advance Directives.
28. Ibid.