Definitions for “ palliative care ” , “ end-of-life ” and “ terminally ill ” in oncology : a scoping review Definiciones para “ cuidados paliativos ” , “ final de vida ” y “ enfermedad terminal ” en oncología : scoping review Definições para “ cuidados paliativos ” , “ final de vida ” e doença terminal em oncologia : scoping review

Objective: to identify and map the definitions for palliative care, end of life, and terminally ill in the oncology literature. Materials and method: scoping review guided by Joanna Brigs Institute recommendations. We analyzed original articles, published between 2012 and 2017, indexed in the databases Pubmed, Web of Science and Scopus. The data collection resulted in 51 articles selected for analysis. Also, we have consulted the websites of 25 palliative care societies from countries best ranked in The Economist’s Quality of Death Ranking. The data were analyzed through descriptive statistics, and summary of the themes, in this case the definitions. Results: terminally ill is a disease with a prognosis of lifetime ranging between hours and months, there is clinical worsening, functional decline, and presence of metastases. Palliative care aims to promote quality of life and dignity. End of life is the period of up to 12 months before death. Conclusions: we constructed synthesis and definitions for the concepts investigated. Thus, it was possible to contribute to the adoption of a standardized language in care and investigations with cancer patients in end-of-life.


Introduction
The demographic and epidemiological transition, made possible by the control of infectious diseases and reduction of maternal and child mortality, changed the clinical population profile,

Organization Web site Search
Concerning palliative care societies, we consulted, between October and November 2018, the introductory pages of each website, and sought to identify glossaries that could indicate the meaning of the terminologies used by societies in their atlases, manuals or guides.

Data Extraction and Analysis
We organized the data in a spreadsheet program (LibreOffice Calc), which included: article title, authors, area, journal, journal impact factor, year of publication, objectives, method, number of study participants, the definition given for palliative care and/or terminally ill and/or end-oflife. We synthesized the definitions by simple frequency and percentage.   In table 1, we summarize and present a consensus of definitions for the concepts analyzed.

Table. 1 Definitions for "terminally ill", palliative care and end-of-life in oncology Terminally Ill
A disease that no longer responds to modifying treatment associated with the presence of metastases, functional decline, and worsening of quality of life. Life expectancy is less than 12 months.

Palliative care
An interdisciplinary approach centered-patient with advanced or terminal illness and his family. Palliative care aims to provide quality of life and relief from suffering through overall symptom control and respect for values and beliefs.

End-of-life
Stage of a disease in which the possibility of death becomes real and life expectancy is less than 12 months. There is rapid physical and psychological deterioration, as well as increased symptoms. Source: Own creation, 2020.

Discussion
In the international literature, quantitative approach studies are the ones that present the most definitions for situations involving palliative care and end-of-life. Especially when it comes to delimiting population and sample. This fact may indicate that the methodological designs linked to this approach tend to present more rigorous selection criteria for research participants. The need arises for qualitative studies to improve the inclusion criteria in the selection of study participants, based on definitions, terminologies, and concepts that can ensure greater validity and reliability to the results. Defining terms, establishing criteria, as well as adopting standardized language favors not only the methodological aspects of research but the transfer of knowledge to clinical practice, helping to consolidate knowledge areas (57).
Medicine stands out as the area of knowledge that has published most studies, demonstrating the growing appropriation of this knowledge about palliative care. Last years, palliative care has moved between a multidisciplinary domain and a new area of medical expertise (58).
Countries with the most publications presenting definitions of palliative and/or end-of-life care and/or terminal illness -Australia, Canada, South Korea, the United States, the Netherlands, and Taiwan -are also countries that rank well for refers to end-of-life quality in The Economist survey. In such countries, the quality of services provided by easy access to opioids, psychological support, and bereavement services, the appropriate number of specialists in the field, and community participation also help these countries to provide satisfactory Palliative Care (7). Countries with good access to this type of care have a high Human Development Index (HDI), i.e., have a high life expectancy, good access to education, and high gross national income (59).
The United States of America, for example, occupies the 13 th position in the HDI world ranking, and the life expectancy of the population is 79.5 years old (60). An aspect that can contribute to the good development of palliative care in the USA is the presence of legislation on patients' rights at the end of life. As well as the presence of reference centers and associations on the subject, which is recognized worldwide. Nevertheless, limitations in symptom control (fatigue, ascites, dyspnea), lack of investment in research in the area, as well as the drop in the number of professionals, notably doctors and nurses, at different levels of care are barriers to integration and execution of palliative care in the UShealth care system (60).
Canada occupies the 12 th position in the same ranking; the population has a life expectancy of 82.5 years old. The Canadian health care system provides for a structure based on access, quality, and long-term sustainability. In addition, this agreement is aimed at reforms in primary health care, information technology support, coverage for home care services, and facilitated access to medical and diagnostic equipment (61). In 2017, the Canadian Ministry of Health introduced a law providing for the development of palliative care structures (62).
Taiwan, a top-rated Asian country in The Economist ranking, since 2000, has patient rights legislation (63). From 2015, Taiwanese law provides that anyone with cognitive ability, over the age of 20, may draw up a document in the form of advance directives or advanced care plan, refusing to receive certain measures that have no clinical benefit, which may result in suffering (64).
When it comes to knowledge societies, Latin American and African countries still have weaknesses in structure, legislation, public policies, programs, and civil and health organizations in palliative care. A study (65) published in 2019 found that developing countries, i.e., those with medium to High Human Development Index (HDI), present more significant challenges in implementing palliative care practice. As well as countries with high infant and child mortality rates, infectious diseases, high rates of political corruption, and fragility in democracy. In such countries, the priority of health investments is for diseases that have not yet been controlled or eradicated and are the cause of high mortality rates. Countries with limited palliative care services also had difficulties in accessing other health services and challenges in promoting different forms of well-being (66).
Knowledge societies in the United Kingdom, Germany, Australia, Switzerland, and Panama have definitions for Palliative Care and End of Life. Panamanian society is the only one among Latin American countries to present the definition for such concepts. The French Society for Palliative Care and Follow-up is the only one that provides definitions for the three concepts investigated in this study. France has a specific legislation for end-of-life behaviors, such as the elaboration of advance will directives, procedures for the implementation of continuous sedation until death, and for the limitation or withdrawal of treatments. In this country, palliative care is a recognized medical specialty. Furthermore, there are pedagogical training projects for doctors and nurses, oral opioids are available, and doctors of different specialties can prescribe them. These factors favor the development and consolidation of palliative care in France (67).
To define palliative care, the criteria used were advanced, terminal, incurable and severe diseases. In addition, quality of life was often related to this type of care, symptom management, specialized team care, family support, and coping with psychosocial and spiritual symptoms. The lack of consensus on the definition of palliative care is related to the conflicts that focus, especially when the specialized teams start the approach. Some professionals believe that a more advanced follow-up of the disease is necessary. Others think that the introduction of palliative care should occur when the disease is diagnosed, and others when it no longer responds to modifying treatment. In this regard, confusion is still evident between palliative care and supportive care. However, it is possible to observe that the authors agree with the objectives of such care. Lack of consensus hinders government funding and the opening of new programs in the area (68).
Regarding end-of-life, different criteria were defined to conceptualize it, which were associated with severe physical and cognitive deterioration, tumor progression, and malignancy. It was often associated with the last days or hours of life and in some prognostic literature less than six or twelve months of life (9, 54, 55, 56). However, clinicians often stipulate prognoses intuitively, so they are inaccurate. Some scales aid this prognosis, but they depend on the patient, settings, and physicians. These uncertainties cause harm to both families and patients, given the expectations raised about this final period of life (69). The terminal illness was linked to different prognoses, ranging from days to less than one year of life. This term has also been associated with incurable, progressive diseases, and a period of intense deterioration in the quality of life. However, some authors consider that to classify a patient as a terminal; it is necessary to have knowledge about the estimated survival period for a given disease and to know the prognosis of most lethal chronic diseases. Other authors also state that the terminal condition is associated with the impossibility of restoring health and that in the absence of artificial procedures, death is achieved (13, 14, 18, 20, 21, 40).
A limitation of this study is the language barrier. We consulted only articles and websites of societies with English, Spanish, Portuguese, and French. Moreover, we may have been misinterpreted some websites and even some articles. Due to possible translation problems, as the authors and proofreaders who selected the documents have Portuguese as their native language.
Another limitation is the exclusion of review article. The studies with this methodological approach may have identified other terminologies and concepts that could endorse the definitions found. Finally, having restricted the area of oncology to search may also be a limiting factor of the conclusions presented.

Conclusions
In this article, we identified and mapped the definitions for palliative care, end-of-life, and terminally ill in oncology literature. The definitions were linked to the rapid progression of the disease, the decline in functionality, and the estimated lifetime ranging from to 12 months. There was a lack of consensus on definitions, even in the area of oncology, which has well-defined criteria and guidelines.
The implications of this study for research concern the possibility of standardizing terminologies, as well as helping to define inclusion and exclusion criteria of patients in other research, especially those with a qualitative approach. Likewise, it contributes to the consolidation of the area, favoring the adoption of common vocabulary in the academic and scientific circles when referring to patients with a terminally ill, at the end-of-life or in palliative care.
The implications for the practice are related to the fact that clarifying and defining terminologies can qualify palliative care. That way, it is possible to elaborate individualized care plans based on a common language adopted among all members of the interdisciplinary team.

Quantitative study
Terminally ill: diagnostic survival of more than two days and less than 3 months.

Quantitative study
Terminally ill: estimated life expectancy of less than 3 months.