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Address correspondence to: David Hui, MD, MSc, Department of Palliative Care and Rehabilitation Medicine, Unit 1414, University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, TX 77030, USA.
The terms “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care” are commonly used but rarely and inconsistently defined.
Objectives
We conducted a systematic review to examine the concepts and definitions for these terms.
Methods
We searched MEDLINE, PsycINFO, Embase, and CINAHL for published peer-reviewed articles from 1948 to 2012 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. We also searched 10 dictionaries, four palliative care textbooks, and 13 organization Web sites, including the U.S. Federal Code.
Results
One of 16, three of 134, three of 44, two of 93, and four of 17 articles defined or conceptualized actively dying, end of life, terminally ill, terminal care, and transition of care, respectively. Actively dying was defined as “hours or days of survival.” We identified two key defining features for end of life, terminally ill, and terminal care: life-limiting disease with irreversible decline and expected survival in terms of months or less. Transition of care was discussed in relation to changes in 1) place of care (e.g., hospital to home), 2) level of professions providing the care (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative). Definitions for these five terms were rarely found in dictionaries, textbooks, and organizational Web sites. However, when available, the definitions were generally consistent with the concepts discussed previously.
Conclusion
We identified unifying concepts for five commonly used terms in palliative care and developed a preliminary conceptual framework toward building standardized definitions.
Prognostication of life expectancy is of the utmost importance to patients, families, and health care professionals, particularly in the setting of advanced disease. Many important health care decisions, such as those regarding chemotherapy use, hospice referral, advance care planning, discharge planning, and personal finances, are dependent on the expected survival duration. The terms “end of life,” “terminally ill,” and “actively dying” have prognostic implications and are frequently used in clinical communications and published articles;
however, the exact meaning of these terms is unclear. This ambiguity results in confusion that may lead to delays and inconsistencies in arranging “terminal care” and facilitating “transition of care.” Ironically, these latter two terms also are poorly defined.
In a recent survey conducted by our team, palliative care specialists ranked the terms end of life, terminally ill, terminal care, actively dying, and transition of care highly in regard to both the frequency of use and the relative importance.
A better understanding of the defining features and concepts for these five terms could help to standardize them and thus improve communication among clinicians, researchers, and policy makers. The objective of this systematic review was to examine the published literature, medical dictionaries, textbooks, and organization Web sites for concepts and definitions for end of life, actively dying, terminally ill, terminal care, and transition of care.
Methods
Literature Search
This study was approved by the M. D. Anderson Cancer Center Institutional Review Board without the need for full committee review. Between February 21, 2011, and April 18, 2011, we searched all available records in Ovid MEDLINE, Ovid Embase, Ovid PsycINFO, and EBSCO CINAHL from 1948 to 2011. Our search strategy consisted of Medical Subject Headings and text word or text phrase for actively dying, end of life, terminally ill, terminal care, and transition of care, plus one of the following terms including “defin$,” “understanding,” “conceptualization,” “terminology,” and “nomenclature.” This methodology has previously been used for other palliative care terms.
Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks.
We included all original studies, reviews, systematic reviews, guidelines, editorials, commentaries, and letters that specifically defined or conceptualized the terms of interest and excluded non-English articles, dissertations, conference abstracts, and duplicates. The search was updated on September 2012. In addition, we conducted a hand search of the reference lists of all included articles.
After the initial librarian search, two palliative care specialists independently reviewed the title and abstract of each citation for inclusion. Publications were included if one of their objectives was to provide a definition or conceptualization for the terms of interest. Any disagreements were discussed and a consensus reached. We then retrieved the full article and extracted the definitions and/or key concepts related to each term.
Dictionary Search
We also searched for definitions related to actively dying, end of life, terminally ill, terminal care, and transition of care in six print dictionaries and four online medical dictionaries. The print dictionaries were selected from a list of 26 based on their year of publication and authoritative publishers and included McGraw-Hill Allied Medical Dictionary (2008), Dorland's Illustrated Medical Dictionary (2007), Black's Medical Dictionary (2010), Mosby's Medical Dictionary (2009), Stedman's Medical Dictionary (2006), and Taber's Cyclopedic Medical Dictionary (2009).
The Google search engine was used to identify four online medical dictionaries based on criteria outlined by A Guide for Evaluating Health Web Sites provided by the National Network of Libraries of Medicine (http://nnlm.gov/outreac/consumer/evalsite.html). These included MediLexicon (2011), Medical Dictionary (WebMD, 2011), MedlinePlus Medical Dictionary (2011), and The Free Dictionary: Medical Dictionary (2011).
Textbook Search
We identified four commonly used palliative medicine textbooks (Oxford Textbook of Palliative Medicine, 4th edition; Textbook of Palliative Medicine, 1st edition; Principles and Practice of Palliative Care and Supportive Oncology, 3rd edition; and Palliative Medicine, 1st edition) and searched for definitions for the five terms of interest.
Organization Web site Search
We also searched 12 palliative care and oncology organization Web sites for definitions related to the five terms of interest, including American Academy of Hospice and Palliative Medicine, American Cancer Society, American Society of Clinical Oncology, European Association for Palliative Care, European Society for Medical Oncology, Education in Palliative and End-of-life Care, End-of-Life/Palliative Education Resource Center, International Association for Hospice and Palliative Care, Multinational Association of Supportive Care in Cancer, National Comprehensive Cancer Network, National Cancer Institute (NCI) dictionary, and National Hospice and Palliative Care Organization. We also searched the U.S. Federal Code for legal definitions for the five terms.
Statistical Analysis
We summarized the concepts and definitions using frequencies and percentages.
Results
Literature Search
The literature search flowchart is shown in Fig. 1.
Fig. 1Search strategy for articles that conceptualized/defined “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care.”
Only one article addressed definitions related to actively dying (Table 1): “The hours or days preceding imminent death during which time the patient's physiologic functions wane.”
No definitions were found in dictionaries and textbooks for this term (Tables 2 and 3). Two Web sites provided the same definition of actively dying, describing it as a process with unique signs and symptoms before death (Table 4).
Table 1Definitions for “Actively Dying,” “End of Life,” “Terminally Ill,” “Terminal Care,” and “Transition of Care”
End of life: “That financing has contributed to the growth of an important care-delivery service, but its restriction to those with a 6-month-or-less prognosis has only further cemented the notion that the end of life is constrained to a short period of time during which a person is clinically recognized as dying.”
End-of-life: “In clinical medicine, the ‘end of life’ can be thought of as the period preceding an individual's natural death from a process that is unlikely to be arrested by medical care.”
None
End-of-life: “For insurance purposes, the ‘end of life’ has been operationalized to represent the last 6 months of a patient's life.”
Terminal condition: “What we are suggesting then is the commonsense view, held by at least two appellate courts, that ‘dying’ or a ‘terminal condition’ is ‘a condition caused by injury, disease, or illness from which, to a reasonable degree of certainty, there can be no restoration of health, and which, absent artificial life-prolonging procedures, will inevitably lead to natural death.”
None
Terminally ill: “The authors argue that those permanently unconscious are by definition terminally ill and suffering from a fatal pathology, because medical treatment in their cases will not lead to a restoration of health and will prolong the dying process.”
None
Terminally ill: “We … argue that people in an irreversible coma (IC) and/or a persistent vegetative state (PVS) are, ipso facto, terminally ill. For the sake of simplicity, we will consider IC and PVS to belong to this same class of terminally ill people and refer to them as permanently unconscious, though we recognize that each group has different, but related, neurological impairments.”
Terminal illness: “The Medicare hospice benefit, for example, is limited to persons whose physicians attest that the patient has ‘a terminal illness with a life expectancy of six months or less.’”
Xact Medicare Services, Medicare Part B Reference Manual, Revision 020, August 23, 1996
Subjective judgment: “The usual approach regarding living will has been to delegate the determination of whether an individual is terminally ill to a physician, perhaps with some consultation required. Other possibilities abound, including allowing the patient to make the determination, creating a committee for review, requiring judicial review, requiring consensus between the attending physician and named family members, etc.”
Miesel, supra note 1
Statistical prognosis approach: “… required that public policy (e.g., in defining the population eligible for physician-assisted suicide) adopt a definition that requires that a terminally ill person has ‘less than x% chance to live y time’. The statistical prognosis approach could be more complex, for example, by stating that the patient's survival must also be less than (x + a)% at some later time (y + b).”
None
Observable clinical threshold of illness: “A patient with an illness expected to be fatal will be classified as “terminal” if the patient's health become worse than a stated threshold.”
Terminal care period: “The period during which there is evidence of progressive malignancy, and in which therapy cannot realistically be expected to prolong survival significantly. Patients enter this period either at time of diagnosis, or following a period of active treatment. The onset of the terminal care period should not be confused with the point at which life-expectation is estimated to be short. A patient might be expected to die within a few months, but have a treatable malignancy. This patient would still be in the active treatment period.”
None
Terminal illness: “Calman lists three conditions, all of which need to be met before making a diagnosis of ‘terminal’ illness in cancer patients: a firm diagnosis, with symptoms and signs relate to progressive malignant disease and not primarily to non-terminal conditions; the recognition that death is not far off; and that conventional anticancer therapy (surgery, radiotherapy, cytotoxic chemotherapy and hormonal therapy) has been used to the full.”
Calman KC. Physical aspects. In: Saunders CM, ed. The management of terminal disease. London: Arnold, 1978
Type of terminal care period: “Type I: no tumor directed therapy …; Type II: tumor-directed therapy discontinued …; Type III: tumor-directed therapy continued during terminal period.”
Terminal care: “Concerns individuals with a terminal diagnosis, from which death can be expected within 12 months. Palliative terminal care concerns relieving the patients' suffering in the last phase of their lives, and includes, in addition to alleviation of physical symptoms, attention to emotional, spiritual and social aspects.”
Themes identified for transition from adolescent to adult care include: timing (gradual, individualized), no specific time, arrangement of clinics (specialized, clinic hours, professionals), information giving (tailored), transition models.
Transition of care during the end of life: “1) a change in location of where the patient was cared for by the PCP (Palliative Care Program) or 2) a change in which clinical service provided care.”
Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, and clinicians.
Themes identified for transitions at the end of life include 1) new or different treatments, 2) no more treatment/curative to palliative care, 3) activity limitations/functional decline, 4) initiation of oxygen therapy, 5) illness exacerbation or hospitalization, 6) improvement from illness.
Table 3Definitions for “Actively Dying,” “End of Life,” “Terminally Ill,” “Terminal Care,” and “Transition of Care” From Palliative Care Textbooks
Palliative Care Textbook
Actively Dying
End of Life
Terminally Ill
Terminal Care
Transition of Care
Oxford Textbook of Palliative Medicine, 4th edition (2010)
No entry
No entry
Terminal phase: The period of inexorable and irreversible decline in functional status before death. This may unfold gradually over days or weeks with a fluctuating but nonetheless ongoing decline in a progressive illness, precipitously following an unexpected and devastating neurological event such as a stroke, or following a planned withdrawal of life-sustaining interventions, such as hemodialysis or ventilatory support
No entry
No entry
Textbook of Palliative Medicine, 1st edition (2006)
No entry
No entry
No entry
No entry
No entry
Principles and Practice of Palliative Care and Supportive Oncology, 3rd edition (2007)
Terminal illness: An irreversible condition that in the near future will result in death or a state of permanent unconsciousness from which you are unlikely to recover. In most states, a terminal illness is defined as one in which the patient will die “shortly” whether medical treatment is given
No entry
No entry
American Society of Clinical Oncology, www.asco.org
No entry
No entry
No entry
No entry
No entry
European Association for Palliative Care, www.eapcnet.eu
No entry
No entry
No entry
No entry
No entry
European Society for Medical Oncology, www.esmo.org
Actively dying: Virtually, all dying patients go through a stereotypical pattern of symptoms and signs in the days before death. This trajectory is often referred to as “actively dying” or “imminent death.”
Actively dying: Virtually, all dying patients go through a stereotypical pattern of symptoms and signs in the days before death. This trajectory is often referred to as “actively dying” or “imminent death.” (From EPERC)
End of life: That part of life where a person is living with, and impaired by, an eventually fatal condition, even if the prognosis is ambiguous or unknown.
Terminal condition: A progressive condition that has no cure and that can be reasonably expected to cause the death of a person within a foreseeable future. The definition is inclusive of both malignant and nonmalignant illness and aging. A person has an eventually fatal condition if their death in the foreseeable future would not be a surprise. The terms eventually fatal or terminal condition are used interchangeably. In reference to the patient, language that refers to living with an eventually fatal (or terminal) condition is recommended.
No entry
No entry
Multinational Association of Supportive Care in Cancer, www.mascc.org
No entry
No entry
No entry
No entry
No entry
National Comprehensive Cancer Network, www.nccn.org
Terminal disease: Disease that cannot be cured and will cause death.
No entry
Transitional care: Support given to patients when they move from one phase of the disease or treatment to another, such as from hospital care to home care. It involves helping patients and families with medical, practical, and emotional needs as they adjust to different levels and goals of care.
The National Hospice and Palliative Care Organization, www.nhpco.org
Terminally ill: An individual who has been certified by a physician as having an illness or physical condition which can reasonably be expected to result in death in 24 months or less after the date of the certification. (26 USC Sec. 101) Terminally ill: An individual has a medical prognosis that such individual's life expectancy is nine months or less. (5 USC Sec. 8714d) Terminally ill: The person has a medical prognosis such that the life expectancy of the person is less than a period prescribed by the Secretary. The maximum length of such period may not exceed 12 months. (38 USC Sec. 1980) Terminally ill: The individual has a medical prognosis that the individual's life expectancy is 6 months or less. (42 USC Sec. 1395x)
discussed the “challenge of recognizing the onset of this unique period referred to as the end of life” and two key aspects: 1) a disease-centered perspective based on a period of irreversible decline before death and 2) a time-based perspective related to the hospice admission criteria of six months or less of life expectancy. The time-based approach also was mentioned in an editorial by Lunney.
One dictionary (Table 2) and one organizational Web site (Table 4) provided definitions for end of life. Both incorporated elements of disease trajectory and life expectancy in their definitions, although the duration of survival was not clearly defined.
Concepts and Definitions for Terminally Ill
Terminally ill was discussed in three articles, two of which focused on the legal definitions
discussed the criteria for categorizing terminally ill, including “1) A clear definition of terminal illness so that almost all individuals may be classified correctly; 2) A reasonable survival period of persons who are categorized as terminally ill (to make, effect, and be affected by decisions or to receive benefits); 3) A period of terminal illness recognizable for most lethal chronic diseases; and 4) Competence of persons within the category, at least for part of their time as terminally ill.” The authors further described three approaches to defining this term: subjective judgment, statistical prognosis approach, and observable clinical threshold of illness (Table 2). They also cited the Medicare hospice benefit definition in which a terminal illness was described as a life expectancy of six months or less.
McCartney and Trau proposed that a “terminal condition” is one in which “to a reasonable degree of certainty, there can be no restoration of health, and which, absent artificial life-prolonging procedures, will inevitably lead to natural death.” They further argued that patients in irreversible coma or persistent vegetative state were terminally ill.
In a systematic review, Hui et al. identified six definitions related to terminally ill from various palliative oncology publications. Four of these definitions involved a life expectancy of six months or less (Table 2).
We identified three definitions from dictionaries (Table 2), one definition from textbooks (Table 3), and seven definitions from organizational Web sites (Table 4) for terminally ill. Seven of these definitions included the concept of irreversible fatal illness. Nine included a reference to a limited life expectancy, ranging from “24 months or less,” “12 months or less,” “9 months or less,” “6 months or less,” “days or weeks,” “shortly,” and “within a foreseeable future” to “unfavorable prognosis.” The U.S. Federal Code alone provided four different definitions of terminally ill.
Concepts and Definitions for Terminal Care
Terminal care was defined in two articles (Table 1). In the study by McCusker,
they cited the three criteria for a terminal diagnosis, including 1) firm evidence of progressive disease, 2) termination of active cancer therapies, and 3) “death is not far off.” However, “not far off” was not elaborated further. Others defined the terminal care period as ranging from three months to six months to 12 months.
Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, and clinicians.
(Table 1). All three studies on end-of-life transitions addressed three aspects of transition: 1) place of care (e.g., hospital to home and vice versa), 2) level of care professions providing the care (e.g., oncologists to palliative care teams), and 3) goals of care (e.g., curative to palliative treatments and no further active treatments). The pediatric study also discussed the first two aspects.
We did not identify any definitions from dictionaries or textbooks for transition of care (Tables 2 and 3). The NCI Web site definition of transitional care coincides with the three aspects of transition of care discussed previously (Table 4).
Discussion
This systematic review revealed a paucity of references aimed at conceptualizing or defining actively dying, end of life, terminally ill, terminal care, and transition of care. These terms have previously been identified to be commonly used in both clinical and research settings.
Among the available definitions, we identified a number of unifying themes. The first four terms involved diagnosis of progressive irreversible disease with a limited prognosis, although there was no consensus on the exact time frame. Transition of care was defined as evolving place, level, and goals of care. Based on our findings, we developed a preliminary conceptual framework (Fig. 2) to help build standardized consensual definitions.
Fig. 2A conceptual framework toward understanding “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care.” Based on our systematic review, end of life, terminally ill, and terminal care period are synonymous and apply to patients with progressive disease with months or less of expected survival. Actively dying is related to patients with days of survival, and transition of care is related to changes in the place of care, level of care, and goals of care.
The National Institutes of Health (NIH) State-of-the-Science Conference Statement on Improving End-of-Life Care states that “there has been a lack of definitional clarify related to several concepts and terms,” which included end of life and transition of care.
This lack of clear definitions for these terms represents a barrier to research on care. Indeed, terms such as end of life were found in one-third of the palliative cancer care literature and ranged from “end-of-life discussions” to “end-of-life care.”
The ambiguity with this term is illustrated by two research publications with end of life in their titles. One of these articles discussed end of life in terms of years,
Interestingly, we also found that the U.S. Federal Code provided four different survival durations (less than 24 months, 12 months, nine months, and six months) for the term terminally ill in four different sections. Because the duration of expected survival is an important determinant of goals of care and treatment decisions,
it is important to standardize the use of these terms in the literature. This study represents our attempt to bring some clarity to a confusing area.
Actively dying has not been well defined. One definition described it in terms of the last hours or days of life, and the other discussed the presence of unique signs and symptoms preceding death. There is a paucity of studies on the signs of impending death.
Further studies are needed to examine specific signs that may signal that the patient is actively dying and to allow clinicians to educate family members and make appropriate recommendations toward maximizing comfort and minimizing aggressive end-of-life measures.
Based on our literature review, the terms end of life, terminally ill, and terminal care share similar meaning: progressive life-limiting disease with a prognosis of months or less. How the terms differ is in their application: end of life is used to define a particular time frame, terminally ill is used to describe a patient's condition, and terminal care is used to characterize care delivered for terminally ill patients. The NIH State-of-the-Science Conference Statement added two other dimensions to the definition for end of life, namely impaired function and increased symptom burden requiring higher levels of care, both of which are related to a shortened survival and progressive disease.
Part of the challenge with these prognostic terms is that both our science and language of prognostication are imprecise. Because death is often mediated by catastrophic events such as myocardial infarction and pneumonia, it is difficult to know exactly how long a patient is going to live. Thus, general time frames such as “months,” “weeks,” or “days” are recommended when communicating with patients about their prognosis.
Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.
In this study, we also propose that end of life, terminally ill, and terminal care use be limited to patients with months or less of expected survival. Fig. 2 presents a conceptual framework detailing the meaning of these terms.
Our study revealed that transition of care has three key dimensions: place of care, level of care, and goals of care. The concept of goals of care was recently reviewed by Kaldjian et al.
and classified under six major domains: cure, prolonging survival, optimizing function, improving comfort, achieving life goals, and supporting family/caregiver. Although transition of care occurs throughout one's life, transitions are particularly common during the end-of-life period, such as being hospitalized and subsequently discharged, meeting the palliative care team, stopping life-prolonging therapies, enrolling in home hospice, transferring to inpatient hospice, and focusing on comfort care. Schofield et al.
conducted a systematic review discussing the communication process of transition from curative cancer treatment to palliative care.
Although we conducted an exhaustive search of the literature, it is important to recognize that, in this systematic review, we only examined articles that aimed to conceptualize or define the terms rather than all definitions mentioned in all articles. We previously extracted all available definitions from a sample of the palliative oncology literature over a 12 months period.
Furthermore, our search strategy was specific and did not include other distinct but related terms. For example, “imminent death” was not included for actively dying, which may have limited our ability to uncover relevant resources for definitional data. We also did not review the gray literature, abstracts, or statutory laws from countries other than the U.S. and limited our search to the English language only. Further studies are needed to examine the use of these terms in other languages.
The conceptual framework developed here may help to put the five terms in context with each other, with the aim of an increased understanding. Our findings highlight the urgent need to develop consensus definitions for these terms to facilitate daily communications related to clinical care, scientific research, education, and public policy. This may be achieved through Delphi processes or expert workgroups. Surveys of patients, clinicians, and researchers about their definitions for these terms also may provide additional insights. Until these terms are clearly defined and universally understood, it is important to provide a definition for these terms whenever they are used.
Disclosures and Acknowledgments
Dr. E. B. is supported in part by National Institutes of Health grants RO1NR010162-01A1, RO1CA122292-01, and RO1CA124481-01. Dr. D. H. is supported in part by an institutional startup grant (#18075582). This study also was supported by the M. D. Anderson Cancer Center Support Grant (CA 016672). The funding sources were not involved in the conduct of the study or development of the submission. The authors declare no conflicts of interest.
References
Hui D.
Mori M.
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The lack of standard definitions in the supportive and palliative oncology literature.
Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks.
Transitions regarding palliative and end-of-life care in severe chronic obstructive pulmonary disease or advanced cancer: themes identified by patients, families, and clinicians.
Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.
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