Terminal Illness

by

Mercedes Bern-Klug

• LAST REVIEWED: 27 April 2017
• LAST MODIFIED: 27 April 2017
• DOI: 10.1093/obo/9780195389678-0247

Introduction

Use of the term “terminal illness” has been waning in the literatures of the social and health sciences since the late 20th century, due in part to the increase in the number of medical treatment options available to attempt to postpone dying and death. It has become far more common to discuss the terminal phase of an illness rather than to refer to the illness itself as terminal. Use of the term “terminal phase” underscores the advancement of a disease process rather than a specific disease category. As explained in the Oxford English Dictionary, the etymology of the Latin word “terminal” includes “end” and “boundary.” When the term is applied to illness, it refers to the final stage of a fatal disease (Oxford English Dictionary, Oxford: Oxford University Press, 2015). Use of the broader term “end of life” (as a noun as well as an adjective) has been gaining traction since the late 20th century, and, with it, the understanding that part of the end-of-life experience for many people with advanced chronic illness includes the terminal phase of illness. Special thanks to Bhawana Koirala.

Definitions

The literature on terminal illness and the terminal phase of illness overlaps with that of other terms, which are sometimes used synonymously and other times as separate concepts, including as a type of care (e.g., dying, end-of-life care, hospice care, and palliative care). The term “terminal” is often invoked when there is thought to be no further interventions that can be expected to postpone or interrupt the disease process, and that the normal course of the disease will result in death. The terminal phase of an illness is often referred to as dying, and some researchers and practitioners also use the term “active dying” to mean the hours or days immediately preceding death. The terminal phase of an illness, on the other hand, is generally thought to be the weeks and months before the expected death. It was the introduction of the Medicare hospice benefit in 1983 that operationalized the terminal phase of illness as the last six months of life. Indeed, as of this writing (fall 2016), in order for a Medicare beneficiary to convert from an acute-care model of addressing the terminal illness to a hospice model, two physicians must document that under the circumstances facing the patient, a life expectancy of six or fewer months would be typical. Because Medicare policy influences private insurance companies, many companies also operationalize the terminal phase as the last six months of life. While the percentage of Medicare beneficiaries who are admitted to hospice before dying has steadily increased and is now close to half (47.3 percent), most die well before six months. In fact, according to National Hospice and Palliative Care Organization 2014, over one-third are enrolled for less than a week. Some of the major challenges that confront people experiencing the terminal phase of an illness include role transition (from advanced chronic illness to dying); pain; psychosocial crises related to loss, grief, self-determination, and meaning making; access to appropriate care; and the development and articulation of goals of care. The stage of life, cultural expectations, type of illness, and availability of resources all can affect the experience of the terminal phase of illness. There are many ethical issues at all systems levels that have the potential to affect the provision of social work and other services to persons who are experiencing the terminal phase of an illness, and to the people close to them.

• Csikai, E. L., and E. Chaitin. 2006. Ethics in end-of-life decisions in social work practice. Chicago: Lyceum.

  This book, which contains numerous and helpful case studies, begins by reviewing the four core bioethical principles and other core concepts as a foundation for the rest of the book.

• Luptak, M. 2004. Social work and end-of-life care for older people: A historical perspective. Health & Social Work 29.1: 7–15.

  DOI: 10.1093/hsw/29.1.7

  Provides an overview of the historical and social changes in attitudes toward dying and death, and in the practice of social work with persons approaching the end of life.

• Medicare Hospice Benefits. Centers for Medicare & Medicaid Services.

  This resource is annually updated by the federal government to describe and explain the hospice benefits available as part of Medicare.

• National Hospice and Palliative Care Organization. 2014. NHPCO’s facts and figures: Hospice care in America. Arlington, VA: National Hospice and Palliative Care Organization.

  The National Hospice and Palliative Care Organization distributes regularly updated statistics related to hospice use in a variety of settings.