SciELO - Scientific Electronic Library Online

 
vol.9 número2Profundización en la experiencia de profesionales de salud al incorporar terapias complementarias en su práctica clínicaInterrelaciones en el cuidado con las plantas medicinales - "viene de la cuna" índice de autoresíndice de materiabúsqueda de artículos
Home Pagelista alfabética de revistas  

Servicios Personalizados

Revista

Articulo

Links relacionados

Compartir


Enfermería: Cuidados Humanizados

versión impresa ISSN 1688-8375versión On-line ISSN 2393-6606

Enfermería (Montevideo) vol.9 no.2 Montevideo dic. 2020  Epub 01-Dic-2020

https://doi.org/10.22235/ech.v9i2.2317 

Original articles

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

Franciele Roberta Griebeler Cordeiro1 
http://orcid.org/0000-0001-6194-5057

Stefanie Oliveira2 
http://orcid.org/0000-0002-8672-6907

Juliana Zeppini Giudice3 
http://orcid.org/0000-0003-0027-5365

Vanessa Pellegrini Fernandes4 
http://orcid.org/0000-0003-0435-2487

Adriéli Timm Oliveira3 
http://orcid.org/0000-0002-1174-3569

1 Department of Hospital Nursing Care, Federal University of Pelotas. Brazil

2 Department of Primary Health Care, Federal University of Pelotas. Brazil

3 Federal University of Pelotas. Brazil

4 Brazilian Company of Hospital Services, University Hospital of Pelotas. Brazil


Abstract:

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.

Keywords: Palliative care; terminally ill; hospice care; medical oncology; qualitative research

Resumen:

Objetivo: Identificar y mapear las definiciones de cuidados paliativos, fin de vida y enfermedad terminal en la literatura en oncología. Materiales y método: scoping review basada en los supuestos del Joanna Briggs Institute.Se analizaron 51 artículos originales, publicados entre 2012 y 2017, indexados en las bases de datosPubmed,Web of ScienceyScopus. Se consultaron los sitios web de 25 sociedades de cuidados paliativos de los países mejor clasificados enThe Economist's Quality of Death Ranking. Los datos fueron analizados a través de estadística descriptiva y se resumieron por temas, en este caso, las definiciones. Resultados: enfermedad terminal se trata de una enfermedad con tiempo de vida que oscila entre horas y meses; hay un empeoramiento clínico; deterioro funcional y la presencia de metástasis. Los cuidados paliativos tienen por propósito la calidad de vida y la dignidad. El final de la vida comprende el período de hasta 12 meses antes de la muerte. Conclusiones: se ha construido síntesis y definiciones para los conceptos investigados, siendo posible contribuir para adopción de un lenguaje estandarizado en los cuidados e investigaciones junto a los pacientes oncológicos en fin de vida.

Palabras claves: Cuidados paliativos; enfermedad critica; cuidados paliativos al final de la vida; oncología médica; investigación cualitativa

Resumo:

Objetivo: identificar e mapear as definições de cuidados paliativos, final de vida e doença terminal na literatura em oncologia. Materiais e métodos: scoping review baseada nas recomendações doJoanna Briggs Institute. Analisamos artigos oriundos de estudos primários, publicados entre 2012 e 2017, indexados nas bases de dadosPubmed,Web of ScienceeScopus. Foram selecionados 51 artigos que atenderam aos critérios de inclusão e exclusão. Também foram consultados websites de 25 sociedades de Cuidados Paliativos dos países com melhor classificação no índice de qualidade de morte da revistaThe Economist.Os dados foram analisados por meio de estatística descritiva e síntese dos temas, no caso, as definições. Resultados: doença terminal é aquela com tempo de vida que varia entre horas e meses, há piora clínica, deterioramento funcional e metástases. Cuidados Paliativos têm por finalidade a promoção da qualidade de vida e a dignidade. Final de vida é o período de até 12 meses que antecede a morte. Conclusões: construiu-se síntese e definições para os conceitos investigados, sendo possível contribuir para adoção de uma linguagem padronizada nos cuidados e investigações junto aos pacientes oncológicos em final de vida.

Palavras-chave: Cuidados paliativos; estado terminal; cuidados paliativos na terminalidade da vida; oncologia médica; pesquisa qualitativa

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, making chronic noncommunicable diseases prevalent in worldwide. With the natural evolution of the disease, at a certain moment, the modifying treatment is no longer effective, resulting in progression, loss of functionality and death. This period, from the moment the disease no longer responds to the treatment that intends to modify it until death, is defined by different terminologies: terminality, terminal illness, terminal care, end-of-life, actively dying, transition of care, and palliative care 1,2,3. The clinical terms have administrative, clinical and academic repercussions, as they imply the planning of care to be offered to the patient and family 4).

In the literature, especially in oncology and palliative care, there is no consensus on the definition of terminologies commonly used to refer to the final stage of illness and the end-of-life (1,3. Defining such terminologies can help in the qualification of communication between health professionals, researchers, and in the elaboration of public policies at the end-of-life. A review study identified a lack of consensus on the definition of "end-of-life," "terminal illness," "end-of-life care," actively dying," " transition of care" 1). The terms "end-of-life," "terminal illness," "end-of-life care" share a similar meaning: a progressive disease with a prognosis of months or days. This study did not evaluate, for example, publications and associations from countries in which the emergence and growth of palliative care, such as Latin American countries, is present.

Considering the lack of consensus on definitions of terminology used in the late stages of illness and life, as well as the increasing publication of end-of-life public policies and programs and palliative care in countries of the Asian and American continents, it is relevant to identify how such terminologies are used in scientific publications and knowledge societies in the area. In addition, recently the International Association for Hospice and Palliative Care (IAHPC) proposed to the World Health Organization to update the definition of palliative care.

Thus, the objective of this study was to identify and map the definitions for palliative care, end of life, and terminally ill, used in oncology literature.

Materials and Method

We defined a scoping review based on the recommendations of the Joanna Brigs Institute (JBI) 6. A scoping review can be used to map key concepts that underlie a research area. For this study, we prepared a literature review protocol. It was evaluated by two external researchers, considering the population, context, and concepts (PCC) to be investigated. Thus, the research questions were: What concepts of palliative care, end-of-life, and terminal illness are, in adult oncology, adopted by leading palliative care societies in America, Asia, Europe, Africa, and Oceania? What concepts of palliative care, end-of-life, and terminal illness, in the adult area, adopted in qualitative and quantitative approach research in the field of oncology?

Selection criteria

Regarding publications in journals, the inclusion criteria were: original articles and reflection articles published between January 2012 and December 2017, in English, French, Portuguese, and Spanish. For the selection of the original articles, we considered those in which the study population were people/patients aged 18 years old or older, suffering from cancer disease. We excluded editorials, theses, monographs, abstracts at scientific events, experience reports, review articles, and duplicate articles. Regarding Palliative Care Societies, we considered those from the five continents, from the adult area, with an updated web page, which countries presented the best position in The Economist's report on the quality of death 7.

Literature Search

We searched articles through double consultation and double collection in PubMed, Scopus, and Web of Science databases. For this purpose, associated with the Boolean operator AND, the Medical Subject Headings (MeSH) terms "Terminally ill"; "Palliative Care"; "Oncology Service, Hospital." We selected articles after a consensus between the pairs of researchers, who identified the concepts. At first, we read of the "method" section. In the second stage, we read articles in full to determine the inclusion of studies for analysis. In order to ensure the quality of this step, we followed the principles of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). In Figure 1, we summarize the PRISMA adapted to our study.

Figure 1: Search strategy/ Own creation, 2020 

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-of-life. We synthesized the definitions by simple frequency and percentage.

Results

Literature Search

Of the 51 articles analyzed, 46 were quantitative and five qualitative. Of these, seven presented fragmented results from the same study 8,9,10,11,12,13,14. Regarding the years of publication, 2014, 2016, and 2017 had more articles published, totaling, respectively, 14, 12, and 10 publications in the period. Of the areas to which the research was linked, 25 came from Medicine, 13 from multidisciplinary, six from Nursing, three from Psychology, two from Pharmacy, and one from Social Sciences.

Regarding countries, the following stands out Australia (10%), Canada (12%), South Korea (10%), United States (10%), Netherlands (8%), and Taiwan (12%). Journal of Pain and Symptom Management (16%), Palliative Medicine (14%), American Journal Of Hospice & Palliative Medicine (6%), BMC Palliative Care (6%), and Palliative and Supportive Care (6%) were journals with most publications.

About the definitions: “end-of-life” was characterized in five studies, four quantitative and one qualitative; “palliative care” was defined in 15 studies, 11 quantitative and four qualitative and “terminally ill” appeared in 35 studies, 31 quantitative and five qualitative. (Appendix 1) 5,8,9,15,16,17,18,19,3,20,21,22,23,24,25,26,27,28,29,30,11,12,10,13,14,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,36,34,42,54,55,56. Among those, three articles presented two definitions. Two of them for “terminally ill” and “end-of-life” 5,9, another (36) presented for “palliative care and “terminally ill”. For this reason, in Appendix 1, we presented 55 definitions, although 51 articles have been analyzed.

Organization Web site Search

We consulted the websites of 25 Palliative Care Societies, of which 84% defined "palliative care," 24% defined "end-of-life," and 12% defined "terminally ill." Societies from countries with the lowest ranking in The Economist, located mainly on the American and African continents, presented fewer definitions for the three concepts. Three institutions featured one page on social network Facebook as an official website of the institution. Other societies had no website for a consultation. When defined "palliative care," in general, this makes reference to the definitions adopted by the World Health Organization or the Continental Society for the Area (Appendix 2).

The concepts with the most definitions were "terminally ill" and "palliative care." "Terminally ill" is linked to a prognosis defined by a certain amount of months, days, or even hours of life. It is also associated with an incurable disease. Palliative care appears as specialized care provided by a multidisciplinary team, aimed at dignity and quality of life, through pain control and other symptoms. This care is also often related to diseases that no longer respond to modifying treatment and are life-threatening to the patient. Figures 2, 3 , and 4 presents a concept map with the standard definitions linked to the concepts.

Figure 2: Conceptual map for terminally ill. Own creation, 2020 

Figure 3: Conceptual map for palliative care/ Own creation, 2020 

Figure 4: Conceptual map for end-of-life/ Own creation, 2020 

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 

Source: Ouw 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 13th 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 12th 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.

References:

1. Hui D, Nooruddin Z, Didwaniya N, Dev R, de La Cruz M, Kim SH, et al. Concepts and definitions for ‘‘Actively Dying,’’ ‘‘End of Life,’’ ‘‘Terminally Ill”,‘‘Terminal Care”, and ‘‘Transition of Care’’: A systematic review. J Pain Symptom Manage. 2014; 47: 77-89. DOI: https://doi.org/10.1016/j.jpainsymman.2013.02.021 [ Links ]

2. Shigeko I, Hiroko N, Chihoko S, Emiko I. Defining end-of-life care from perspectives of nursing ethics. Nursing Ethics. 2012; 5: 608-618. DOI: https://doi.org/10.1177/0969733011436205 [ Links ]

3. Hui D, Mori M, Parsons HA, Kim SH, Li Z, Damani S, et al. The Lack of Standard Definitions in the Supportive and Palliative Oncology Literature. J Pain Symptom Manage . 2012; 43:582-592. DOI: https://doi.org/10.1016/j.jpainsymman.2011.04.016 [ Links ]

4. Bell C, Nielsen MK, Neegaard MA, Guldin MB, Jensen AB. Remaining lifetime after recognition of terminal illness depends on diagnosis: a nationwide population-based cohort study. J Pain Symptom Manage . 2017; 53:116-123. DOI: https://doi.org/10.1016/j.jpainsymman.2016.08.002 [ Links ]

5. Wright AA, Zhang B, Leating NL, Week JC, Prigerson HG. Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study. BMJ. 2014;348:g1219. DOI: https://doi.org/10.1136/bmj.g1219 [ Links ]

6. Peters MDJ, Godfrey C, McInerney P, Baldini Soares C, Khalil H, Parker D. Scoping Reviews. In: Aromataris E, Munn Z, eds. Joanna Briggs Institute Reviewer's Manual. The Joanna Briggs Institute, 2017. Available from:Available from: https://wiki.joannabriggs.org/display/MANUAL/Chapter+11%3A+Scoping+reviews . Accessed Oct 21, 2019. [ Links ]

7. The Economist. The quality of death: ranking end-of-life care across the world 2015. 2015. Available from: <Available from: http://www.lienfoundation.org/sites/default/files/2015%20Quality%20of%20Death%20Report.pdf >. Accessed July 21, 2019. [ Links ]

8. Franken LG, Masman AD, Winter BCM, Baar FPM, Tibboel D, Gelder T, et al. Hypoalbuminaemia and decreased midazolam clearance in terminally ill adult patients, an inflammatory effect? Br J Clin Pharmacol. 2017; 83(8): 1701 - 12. DOI: https://doi.org/10.1111/bcp.13259 [ Links ]

9. Franken LG, Masman AD, de Winter BCM, Koch BCP, Baar FPM, Tibboel D, et al. Pharmacokinetics of morphine, morphine-3-glucuronide and morphine-6-glucuronide in terminally ill adult patients. Clin Pharmacokinet. 2016; 55(6): 697 - 710. DOI: https://doi.org/10.1007/s40262-015-0345-4Links ]

10. Franken LG, Mathot RAA, Masman AD, Baar FPM, Tibboel D, van Gelder T, et al. Population pharmacokinetics of haloperidol in terminally ill adult patients. Eur J of Clin Pharmacol 2017; 73(10):1271 - 77. DOI: 10.1007/s00228-017-2283-6 [ Links ]

11. Tang ST, Liu TW, Liu LN, Chiu CF, Hsieh RK, Tsai CM. Physician-patient end-of-life care discussions: correlates and associations with end-of-life care preferences of cancer patients - a cross-sectional survey study. Palliat Med. 2014; 28(10): 1222 - 30. DOI: https://doi.org/10.1177/0269216314540974 [ Links ]

12. Tang ST, Chen JS, Chou WC, Chang WC, Wu CE, Hsieh CH, et al. Longitudinal analysis of severe anxiety symptoms in the last year of life among patients with advanced cancer: relationship with proximity to death, burden, and social support. J Nat Compr Canc Netw. 2016; 14(6): 727 - 34. DOI: https://doi.org/10.6004/jnccn.2016.0074 [ Links ]

13. Tang ST, Wen FH, Hsieh CH, Chou WC, Chen JS, Chiang MC. Preferences for Life-Sustaining Treatments and Associations With Accurate Prognostic Awareness and Depressive Symptoms in Terminally Ill Cancer Patients' Last Year of Life. J Pain Symptom Manage . 2016; 51(1): 41 - 51. DOI: https://doi.org/10.1016/j.jpainsymman.2015.08.006 [ Links ]

14. Tang ST, Wen FH, Chang WC, Hsieh CH, Chou WC, Chen JS, et al. Preferences for life-sustaining treatments examined by Hidden Markov Modeling are mostly stable in terminally ill cancer patients’ last six months of life. J Pain Symptom Manage . 2017; 54(5): 628 - 36. DOI: https://doi.org/10.1016/j.jpainsymman.2017.07.042 [ Links ]

15. Miljković MD, Emuron D, Rhodes L, Abraham J, Miller K. “Allow natural death” versus “do not resuscitate”: What do patients with advanced cancer choose? J Palliat Med. 2015; 18(5): 457 - 60. DOI: https://doi.org/10.1089/jpm.2014.0369 [ Links ]

16. Yan Ho AH, Car J, Ringo Ho MH, Tan-Ho G, Choo PY, Patinadan PV, et al. A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial. Directory of Open Access Journals. 2017; 18(1): 1 - 12. DOI: https://doi.org/10.1186/s13063-017-2325-5 [ Links ]

17. Mowll J, Lobb EA, Lane L, Lacey J, Chochinov HM, Kelly B, et al. A preliminary study to develop an intervention to facilitate communication between couples in advanced cancer. Palliat Support Care. 2015; 13: 1381 - 90. DOI: https://doi.org/10.1017/S1478951514001333 [ Links ]

18. Houmann LJ, Chochinov HM, Kristjanson LJ, Petersen MA, Groenvold M. A prospective evaluation of dignity admitted to palliative care. Palliat Med 2014; 28(5): 448 - 458. DOI: https://doi.org/10.1177/0269216313514883Links ]

19. Belanger E, Tetrault D, Tradounsky G, Towers A, Marchessault J. Accuracy and usefulness of the Palliative Prognostic Index in a community setting. Int J Palliative Nurs. 2015; 21(12): 602 - 5. DOI: https://doi.org/10.12968/ijpn.2015.21.12.602 [ Links ]

20. Chang YJ, Kwon YC, Lee WJ, Do YR, Lee KS, Kim HT, et al . Buedens, needs and satisfaction of terminal cancer patients and their caregivers. Asian Pac J Cancer Prev. 2013; 14(1): 209 - 15. Disponible en: http://journal.waocp.org/?sid=Entrez:PubMed&id=pmid:23534725&key=2013.14.1.209Links ]

21. Lee MK, Lee WJ, Do YR, Lee KS, Jung KH, Heo DS, et al. Changes in health-related quality of life and quality of care among terminally ill cancer patients and survival prediction: multicenter prospective cohort study. Palliat Support Care . 2015; 13(4): 1103 - 11. DOI: https://doi.org/10.1017/S1478951514000960 [ Links ]

22. Kao CY, Hung YS, Wang HM, Chen JS, Chin TL, Lu CY, et al. Combination of initial Palliative Prognostic Index and Score Change Provides a better prognostic value or terminally ill cancer patients: a six-year observational cohort study. J Pain Symptom Manage . 2014; 48(5): 804 - 14. DOI: https://doi.org/10.1016/j.jpainsymman.2013.12.246 [ Links ]

23. Sinclair S, Macclement S, Raffin-Bouchal S, Hack TF, Hagen NA, Mcconnell S, et al. Compassion in health care: an empirical model. J Pain Symptom Manage . 2016; 51(2): 193 - 203. DOI: https://doi.org/10.1016/j.jpainsymman.2015.10.009 [ Links ]

24. Huang Y, Xi Q, Xia S, Wang X, Liu Y, Huang C, et al. Development and validation of a prognostic scale for hospitalized patients with terminally ill cancer in China. Support Care Cancer. 2014; 22(1): 145 - 52. DOI: https://doi.org/10.1007/s00520-013-1970-9 [ Links ]

25. Ho AHY, Leung PPY, Tse DMW, Pang SMC, Chochinov HM, Neimeyer RA, et al. Dignity amidst liminality: healing within suffering among Chinese terminal cancer patients. Death Studies. 2013; 37(10): 953 - 70. DOI: https://doi.org/10.1080/07481187.2012.703078 [ Links ]

26. Vuksanovic D, Green HJ, Dyck M, Morrissey SA. Dignity therapy and life review for palliative care patients: a randomized controlled trial. J Pain Symptom Manage . 2017; 53(2): 162 - 70. DOI: https://doi.org/10.1016/j.jpainsymman.2016.09.005 [ Links ]

27. Rosenfeld B, Pessin H, Marziliano A, Jacobson C, Sorger B, Abbey J, et al. Does desire for hastened death change in terminally ill cancer patients? Soc Sci Med. 2014; 111: 35 - 40. DOI: https://doi.org/10.1016/j.socscimed.2014.03.027 [ Links ]

28 . Kim SY, Kim JM, Kim SW, Shin IS, Bae KY, Shim HJ, et al. Does awareness of terminal status influence survival and quality of life in terminally ill cancer patients. Psycho-Oncology. 2013; 22(10): 2206 - 2213. DOI: 10.1002/pon.3275 [ Links ]

29. Julião M, Oliveira F, Nunes B, Carneiro AV, Barbosa A. Effect of dignity therapy on end-of-life psychological distress in Portuguese patients: a randomized controlled trial. Palliat Support Care . 2017; 15(6): 628 - 637. DOI: https://doi.org/10.1017/S1478951516001140 [ Links ]

30. Walczak A, Butow PN, Tattersall MHN, Davidson PM, Young J, Epstein RM, et al. Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers. Int J Nurs Stud. 2017; 67: 31 - 40. DOI: https://doi.org/10.1016/j.ijnurstu.2016.10.008 [ Links ]

31. Eun Y, Hong IW, Bruera E, Kang JH. Qualitative study on the perceptions of terminally ill cancer patients and their family members regarding end-of-life experience focusing on palliative sedation. J Pain Symptom Manage . 2016; 53(6):1010 - 16. DOI: https://doi.org/10.1016/j.jpainsymman.2016.12.353 [ Links ]

32. Guan NC, Boks MPM, Roes KCB, Zainal NZ, Sulaiman AH, Beng TS, et al. Rapid response to methylphenidate as an add-on therapy to mirtazapine in the treatment of major depressive disorder in terminally ill cancer patients: a four-week, randomized, double-blinded, placebo-controlled study. Eur Neuropsychopharmacology. 2014; 24: 491 - 8. DOI: https://doi.org/10.1016/j.euroneuro.2014.01.016 [ Links ]

33. Peng MT, Liu CT, Hung YS, Kao CY, Chang PH, Yeh KY, et al. Sequential Assessments of the eastern cooperative oncology group performance scale enhance prognostic value in patients with terminally ill cancer receiving palliative care. Am J Hosp Palliat Med. 2014; 33(5): 471 - 6. DOI: https://doi.org/10.1177/1049909114566226Links ]

34. Bovero A, Leombruni P, Miniotti M, Rocca G, Torta R. Spirituality, quality of life, psychological adjustment in terminal cancer patients in hospice. Eur J Cancer Care. 2015; 25(6): 961 - 9. DOI: https://doi.org/10.1111/ecc.12360 [ Links ]

35. Modlińska A, Kowalik B, Buss T, Janiszewska J, Lichodziejewska MN. Strategy of coping with end-stage disease and cancer-related fatigue terminally ill patients. Am J Hosp Palliat Med. 2014; 31(7): 771 - 6. DOI: https://doi.org/10.1177/1049909113503705 [ Links ]

36. Seibel K, Valeo SC, Xander C, Adami S, Duerk T, Becker G. Terminally ill patients as customers: the patient’s perspective. J Palliat Med. 2014; 17(1): 11 - 17. DOI: https://doi.org/10.1089/jpm.2013.0141 [ Links ]

37. Huang KS, Wang SH, Chuad SK, Rau KM, Lin YH, Hsieh MC, et al. The effects of hospice-shared care for gastric cancer patients. Plos ONE. 2017; 12(2): 1 - 10. DOI: 10.1371/journal.pone.0171365 [ Links ]

38. Kwak SM, Choi YS, Yoon HM, Kim DG, Song SH, Lee YJ, et al. The relationship between interleukin-6, tumor necrosis factor-ⲁ, and fatigue in terminally ill cancer patients. Palliat Med. 2012; 26(3): 275 - 282. DOI: https://doi.org/10.1177/0269216311406991 [ Links ]

39. Lloyd-Williams M, Payne S, Reeve J, Dona RK. Thoughts of self-harm and depression as prognostic factors in palliative care patients. J Affect Disord. 2014; 166: 324 - 329. DOI: https://doi.org/10.1016/j.jad.2014.05.029 [ Links ]

40. Ekström M, Johnson MJ, Schiöler L, Kaasa S, Hjermstad MJ, Currow DC. Who experiences higher and increasing breathlessness in advanced cancer? The longitudinal EPCCS study. Support Care Cancer . 2016, 24(9): 3803 - 3811. DOI: https://doi.org/10.1007/s00520-016-3207-1 [ Links ]

41. Ruijs CDM, Kerkhof AJ, van Der Wal G, Onwuteaka-Philipsen B. Symptoms, unbearability and the nature of suffering in terminal cancer patients dying at home: a prospective primary care study. BCM Fam Pract. 2013; 14(1): 201 - 217. DOI: https://doi.org/10.1186/1471-2296-14-201 [ Links ]

42. Preissler P, Kordovan S, Ullrich A, Bokemeyer C, Oechsle K. Favored subjects and psychosocial needs in music therapy in terminally ill cancer patients: a content analysis. BCM Palliat Care. 2016; 15: 48 - 53. DOI: https://doi.org/10.1186/s12904-016-0122-7 [ Links ]

43. Pellizzari M, Hui D, Pinato E, Lisiero M, Serpentini S, Gubian L, et al. Impact of intensity and timing of integrated home palliative cancer care on end-of-life hospitalization in Northern Italy. Support Care Cancer . 2017; 25: 1201 - 07. DOI: https://doi.org/10.1007/s00520-016-3510-x [ Links ]

44. Bélanger E, Rodríguez C, Groleau D, Légré F, Macdonald ME, Marchand R. Initiating decision-making conversations in palliative care: an ethnographic discourse analysis. BMC Palliat Care. 2014; 13: 63 - 74. DOI: https://doi.org/10.1186/1472-684X-13-63 [ Links ]

45. Krakowsky Y, Gofine M, Brown P, Danziger J, Knowles H. Increasing access - a qualitative study of homelessness and palliative care in a major urban center. Am J Hosp Palliat Med. 2012; 30(3): 268 - 70. DOI: https://doi.org/10.1177/1049909112448925 [ Links ]

46. Naing Soe Y, Amjad NM, Karim KA. Cross-sectional descriptive study of management modalities and quality of surgical patients in a palliative care unit. Medical Journal Malaysia. 2016; 15(1): 35 - 43. Disponible en: https://journals.iium.edu.my/kom/index.php/imjm/article/view/405Links ]

47. Bužgová R, Kozáková R, Sikorová L, Jarošov D. Measuring quality of life of cognitively impaired elderly inpatients in palliative care: psychometric properties of the QUALID and CILD scales. Aging Ment Health. 2012; 21(12): 1287 - 93. DOI: https://doi.org/10.1080/13607863.2016.1220919 [ Links ]

48. MacArtney JI, Broom A, Kirby E, Good P, Wootton J, Yates PM, et al. On resilience and acceptance in the transition to palliative care at the end of life. Health. 2014; 19(3): 263 - 79. DOI: https://doi.org/10.1177/1363459314545696 [ Links ]

49. Wallen GR, Baker K, Stolar M, Miller-Davis C, Ames N, Yates J, et al. Palliative care outcomes in surgical oncology patients with advanced malignancies: a mixed methods approach. Qual Life Res. 2012; 21(3): 405 - 15. DOI: https://doi.org/10.1007/s11136-011-0065-7 [ Links ]

50. Loggers ET, LeBlanc TW, El-Jawahri A, Fihn J, Bumpus M, David J, et al. Pre-transplantation supportive and palliative care consultation for high-risk hematopoietic cell transplant patients. Biol Blood and Marrow Transplant. 2016; 22(7): 1299 - 1305. DOI: 10.1016/j.bbmt.2016.03.006 [ Links ]

51. Parpa E, Kostopoulou S, Tsilika E, Galanos A, Katsaragakis S, Mystakidou K. Psychometric properties of the Greek version of the patient dignity inventory in advanced cancer patients. J Pain Symptom Manage . 2017; 54(3): 376 - 82. DOI: 10.1016/j.jpainsymman.2017.07.002 [ Links ]

52. Guell E, Ramos A, Zertuche T, Pascual A. Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care. Palliat Support Care . 2015; 13: 295 - 303. DOI: https://doi.org/10.1017/S1478951514000121 [ Links ]

53. Nordly M, Benthien KS, Maase HVD, Johansen C, Kruse M, Timm H, et al, Sjøgren P . The DOMUS study protocol: a randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home. BMC Palliat Care . 2014; 13: 44 - 53. DOI: https://doi.org/10.1186/1472-684X-13-44 [ Links ]

54. Fisher K, Seow H, Cohen J, Declercq A, Freeman S, Guthrie DM. Patient characteristics associated with prognostic awareness: a study of a Canadian palliative care population using the InterRAI Palliative Care Instrument. J Pain Symptom Manage . 2015; 49(4): 716 - 25. DOI: 10.1016/j.jpainsymman.2014.08.008 [ Links ]

55. Pereira FMP, Santos CSV. Intial validation of the mini-mental adjustment to cancer (Mini-MAC) scale: study of portuguese end-of-life cancer patients. Eur J Oncol Nurs. 2014, 18(5): 534 - 539. DOI: 10.1016/j.ejon.2014.04.004 [ Links ]

56. Daneault S, Lussier V, Mongeau S, Yalle L, Côté A, Sicotte C, et al. Ultimate journey of the terminally ill: ways and pathways of hope. Can Fam Physician. 2016; 62(8): 648 - 56. Disponible en: https://www.cfp.ca/content/62/8/648.longLinks ]

57. O’Brien KK, Colquhoun H, Levac D, Baxter L, Tricco AC, Stratus S, et al. Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps. BMC Health Serv Res . 2016; 305. DOI: https://doi.org/10.1186/s12913-016-1579-zLinks ]

58. Cordeiro FR, Kruse MHL. The right to die and power over life: knowledge to govern the bodies. Texto contexto - enfermagem. 2016; 25: e3980014. DOI: https://doi.org/10.1590/0104-07072016003980014Links ]

59. United Nations Development Program. Human Development Reports (accessed em 21 oct 2019). Available from: Available from: http://hdr.undp.org/en/humandevLinks ]

60. United Nations Development Programme. Human Development Indices and Indicators. United States: UNDP; 2018. [ Links ]

61. Canada.ca. Health Expenditures (accessed em 21 oct 2019). Disponible en: Disponible en: https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/health-care-system/canada.html#a7Links ]

62. Canada. Palliative Care in Canada (accessed em 21 oct 2019) Disponible en: Disponible en: https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/palliative-care/framework-palliative-care-canada.html#p1.2Links ]

63. Taiwan Academy of Hospice Palliative Medicine. Hospice Palliative Care Act (Natural Death Act) (accessed em 21 oct 2019) Disponible en: Disponible en: http://www.hospicemed.org.tw/ehc-tahpm/s/w/englishArticle/Hospice_Palliative_CareLinks ]

64. Cho YC. From cure to care: the development of hospice care in Taiwan. Hosp Pal Med Int . 2018; 2(5): 286‒87. DOI: 10.15406/hpmij.2018.02.00108 [ Links ]

65. Sullivan A, Steven MS. Economics principles in action. Nova Jersey: Pretince Hall; 2007. [ Links ]

66. Clark J, Barnes A, Campbell M, Gardiner, CA Life or “Good Death” Situation? A worldwide Ecological Study of the National Contexts of Countries That Have and Have Not Implemented Palliative Care. J Pain Symptom Manage . 2019; 57(4):793-801. DOI: https://doi.org/10.1016/j.jpainsymman.2018.12.007 [ Links ]

67. Arias-Casais N, Garralda E, Rhee JY, Lima L de, Pons JJ, Clark D, Hasselaar J, Ling J, Mosoiu D, Centeno C. EAPC Atlas of Palliative Care in Europe 2019. Vilvoorde: EAPC Press; 2019. [ Links ]

68. Pastrana T, Jüger S, Ostgathe C, Elsner F , Radbruch L. A matter of definition - key elements identified in a discourse analysis of definitions of palliative care. Palliat Med. 2008; 22(1): 222-32. DOI: https://doi.org/10.1177/0269216308089803 [ Links ]

69. Hui D, Ross J, Parque M, Dev R, Vidal M, Liu D, et al. Predicting in patients with advanced cancer in the last weeks of life: how accurate are prognostic models compared clinicians' estimates? Palliat Med. 2019; 28: 269216319873261. DOI: https://doi.org/10.1177/0269216319873261 [ Links ]

How to cite: Cordeiro FR, Oliveira SG, Giudice JZ, Fernandes VP, Oliveira AT. Definitions for “palliative care”, “end-of-life” and “terminally ill” in oncology: a scoping review. Enfermería: Cuidados Humanizados. 2020; 9(2): 205-228. Doi: https://doi.org/10.22235/ech.v9i2.2317

Authors' participation: a) Conception and design of the work; b) Data acquisition; c) Analysis and interpretation of data; d) Writing of the manuscript; e) Critical review of the manuscript

Correspondence: Franciele Roberta Cordeiro, Ph.D., Federal University of Pelotas, Rua Gomes Carneiro, 1, Centro, Pelotas. E-mail: franciele.cordeiro@ufpel.edu.br

Scientific editor in charge: Dra. Natalie Figueredo

Appendix 1. Definitions for terminally ill, palliative and end-of-life care in oncology publications

Appendix 2. Definitions for “palliative care”, “end of life” and “terminal illness” from palliative care societies

Received: February 19, 2020; Accepted: July 10, 2020

Creative Commons License This is an open-access article distributed under the terms of the Creative Commons Attribution License