Abstract
Dysphagia presents multidimensional negative impacts on the life of dysphagic patients and may generate decision conflicts related to their diet. This is a review of the literature on speech-language therapy, decision conflicts and the agents involved in the decision making process for deliberations related to the nutrition of this type of patient. This is an exploratory and descriptive study, with content analysis as proposed by Bardin. The databases used were PubMed, Scopus, Web of Science, Cochrane, Embase and Virtual Health Library. Conflicts involving the speech-language therapist, the patient, the family and the multidisciplinary team were identified. In the selected articles, no theory or method was identified to support the mediation of these conflicts. No Brazilian publications that answered the guiding question were found.
Deglutition disorders; Bioethics; Speech, language and hearing sciences
Resumo
A disfagia tem impactos negativos multidimensionais na vida do paciente disfágico e pode gerar conflitos decisórios relacionados à alimentação. O objetivo deste artigo é revisar a literatura sobre fonoaudiologia, conflitos na tomada de decisão e agentes envolvidos nas deliberações sobre a nutrição desse tipo de paciente. Trata-se de estudo exploratório-descritivo, de revisão integrativa, com análise de conteúdo conforme proposta por Bardin. As bases de dados utilizadas foram: PubMed, Scopus, Web of Science, Cochrane, Embase e Biblioteca Virtual em Saúde. Identificaram-se conflitos envolvendo o fonoaudiólogo, o paciente, a família e a equipe multidisciplinar. Nos artigos selecionados não foi possível identificar uma teoria ou método que fundamentasse a mediação desses conflitos. Não foram encontradas publicações brasileiras que respondessem à pergunta norteadora da revisão.
Transtornos de deglutição; Bioética; Fonoaudiologia
Resumen
La disfagia tiene impactos negativos multidimensionales en la vida del paciente disfágico y puede generar conflictos de decisión relacionados con su alimentación. El objetivo de este artículo fue revisar la literatura sobre fonoaudiología, los conflictos de decisión y los agentes involucrados en el proceso de toma de decisiones para las deliberaciones relacionadas con la nutrición de este tipo de pacientes. Se trata de un estudio exploratorio y descriptivo, donde se realizó una revisión integradora con análisis de contenido y categorización por Bardin. Las bases de datos utilizadas fueron: PubMed, Scopus, Web of Science, Cochrane, Embase y Biblioteca Virtual en Salud. Se identificaron los conflictos entre fonoaudiólogo, paciente, familia y equipo multidisciplinario. En los artículos seleccionados no se identificó ninguna teoría o método que sustente la mediación de estos conflictos. No hay publicaciones nacionales que respondan a la pregunta orientadora.
Trastornos de deglución; Bioética; Fonoaudiología
Bioethics relates to other fields of knowledge, making it necessary to understand multidisciplinary content to address bioethical issues more assertively. The health professional may have difficulties to analyze the scenario and identify problems that need a moral analysis and quick resolution. This analysis must consider ethical, moral, religious, legal, scientific, and technical aspects 11. Rego S, Palacios M, Siqueira-Batista R. A bioética e suas teorias. In: Rego S, Palacios M, Siqueira Batista R. Bioética para profissionais de saúde. Rio de Janeiro: Editora Fiocruz; 2014. p. 39-62..
Pessini and Barchifontaine 22. Pessini L, Barchifontaine P. Problemas atuais de bioética. 11ª ed. São Paulo: Loyola; 2014. define bioethics as a domain of plural perception, which arises from demands related to the emergence and use of technologies applied to medical sciences. This field of study encompasses discussions about care and the relationships established within. Its objective is to safeguard the patient’s integrity and promote good clinical practices by health professionals, including the speech therapist.
Speech therapy deals with issues related to human communication, giving theoretical support to speech therapists to identify, evaluate and rehabilitate individuals who undergo changes in oral and written communication, voice and hearing 33. Brasil. Lei nº 6.965, de 9 de dezembro de 1981. Dispõe sobre a regulamentação da profissão de Fonoaudiólogo, e determina outras providências. Diário Oficial da União [Internet]. Brasília, 10 dez 1981 [acesso 3 mar 2021]. Disponível: https://bit.ly/3e2u6QT
https://bit.ly/3e2u6QT...
. Over the years, speech therapy has expanded its line of action, encompassing new therapeutic scenarios and approaches 44. Brasil. Decreto nº 87.218, 31 de maio de 1982. Regulamenta a Lei n° 6.965, de 09 de dezembro de 1981, que dispõe sobre a regulamentação da profissão de Fonoaudiólogo, e determina outras providências. Diário Oficial da União [Internet]. Brasília, 1982 [acesso 3 mar 2021]. Disponível: https://bit.ly/2PwM6Js
https://bit.ly/2PwM6Js...
. Dysphagia is one of the objects of the specialties that emerged within the profession. The speech therapist specialized in this area is qualified to act in the prevention, evaluation, and treatment of deglutition disorders in all life cycles, prioritizing the patient’s well-being, minimizing risks, and maximizing health-related benefits. Suspension, indication of alternative feeding route or introduction to oral nutrition depend on the speech therapist’s evaluation, in a debate with the multidisciplinary team 55. Conselho Federal de Fonoaudiologia. Resolução nº 492, 7 de abril de 2016. Dispõe sobre a regulamentação da atuação do profissional fonoaudiólogo em disfagia e dá outras providências. Diário Oficial da União [Internet]. Brasília, 18 abr 2016 [acesso 3 mar 2021]. Disponível: https://bit.ly/3vzQgQp
https://bit.ly/3vzQgQp...
.
Divided into four phases (preparatory phase, oral phase, pharyngeal phase and esophageal phase), deglutition is a function of the stomatognathic system performed by structures that participate in other functions, such as speech, voice, breathing, chewing, and sucking. Any change in the path of food from the mouth to the stomach is called dysphagia, and its etiology may include neuromuscular, tumor, infectious, metabolic and degenerative diseases, or iatrogenic events 66. Costa M. Disfagia oral e/ou faríngea e distúrbios referentes. In: Costa M. Deglutição e disfagia: bases morfofuncionais e videofluoroscópicas. Rio de Janeiro: Medbook; 2013. p. 179-95.. Dysphagia is characterized by the presence of penetration, aspiration and bronchoaspiration of food bolus, as well as oral, gastric or liquid fluid, leading, in many situations, to illness. There are more intense biopsychosocial impacts for the dysphagic patient in a situation of vulnerability, because of disease evolution and the impossibility of cure, with damages to well-being and quality of life. Feeding should prioritize the maintenance of nutritional and water status in a safe and effective manner, without jeopardizing the patient’s lung health 77. Jotz GP, Dornelles S. Fisiologia da deglutição. In: Jotz GP, Carrara-de-Angelis E, Barros, APB. Tratado de deglutição e disfagia: no adulto e na criança. Rio de Janeiro: Revinter; 2009. p. 16-9..
This article presents results of an integrative review with content analysis based on Bardin 88. Bardin L. Análise de conteúdo. Lisboa: Edições 70; 2016.. The entire research was based on the research question: “What are the main actors in decision-making involving dysphagic patients and the conflicts they face?”
Method
Integrative review process
This exploratory-descriptive study used the integrative review method, which allowed the synthesis of data already published and identification of evidence-based practices 99. Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs [Internet]. 2005 [acesso 3 mar 2021];55(5):546-53. DOI: 10.1111/j.1365-2648.2005.03621.x,1010. Cullum N, Ciliska D, Haynes RB, Marks S. Enfermagem baseada em evidências: uma introdução. Porto Alegre: Artmed; 2010.. When the researcher takes a qualitative look at the systematic review, a more global evaluation becomes possible, thus including sociocultural, emotional, and behavioral aspects that are part of health care. Following this line, the researcher can obtain information that will allow them to suggest paths and propose new theoretical tools 1111. Joanna Briggs Institute. Joanna Briggs Institute Reviewers’ Manual. Adelaide: Joanna Briggs Institute; 2008..
According to Souza, Silva, and Carvalho 1212. Souza MT, Silva MD, Carvalho R. Revisão integrativa: o que é e como fazer? Einstein [Internet]. 2010 [acesso 3 mar 2021];8(1):102-6. DOI: 10.1590/s1679-45082010rw1134, the integrative review is characterized by six well-defined phases that are easy to organize and understand: 1) formulating a guiding question; 2) establishing inclusion and exclusion criteria to only integrate studies that actually answer that question; 3) determining what information will compose the integrative review corpus; 4) interpreting the extracted data; 5) presenting the results obtained; and 6) synthesizing knowledge of the topic defined at the beginning of the review. In this integrative review, another phase was included – content analysis, as proposed by Bardin 88. Bardin L. Análise de conteúdo. Lisboa: Edições 70; 2016..
Strategies to identify and select studies
The literature search included articles in Portuguese, English or Spanish published until February 29, 2020. Date filter was not applied. The search was performed on Portal de Periódicos CAPES by remote access from Universidade Federal Fluminense and Universidade Federal do Rio de Janeiro.
The keywords selected are registered in the Health Sciences Descriptors (DeCS) and Medical Subject Headings (MeSH) controlled vocabularies: “speech therapy,” “bioethics,” “ethics” and “decision making.” The search also included synonyms and related terms, forming the following search keys: speech therapy and deglutition disorders (speech therapy or speech therapy approach or deglutition disorders or dysphagia rehabilitation), bioethics and ethics (bioethics or ethics or ethics of health care or biomedical ethics or bioethical hospital or medical ethics or ethicists or bioethicists or bioethical specialist* or ethics specialist* or health care ethics or biomedical ethics or ethics, clinical or clinical ethics or hospital ethics or ethical aspects or ethics), and shared decision-making (decision making or decision making* shared or making* shared decision or shared decision making* or clinical decision-making or clinical decision making or decision-making clinical or medical decision-making or decision-making medical or medical decision making). The search keys composed of the words bioethics and ethics were unified to present common terms.
The search keys were combined to refine the results. The survey included six databases: PubMed (four articles), Scopus (32 articles), Virtual Health Library (VHL) (six articles), Embase (13 articles), Cochrane (one article) and Web of Science (17 articles). Such indexers were chosen for returning more articles in a previous search without crossing the keys. OpenGrey was consulted for gray literature, but the database did not return any relevant data. Finally, the results were entered into Mendeley Reference Manager software, which removed duplicates.
The inclusion criteria considered the research question: “What are the main actors in decision-making involving dysphagic patients and the conflicts they face?” Duplicate articles, review articles, letters to the editor, articles that dealt with decision made exclusively by the patient, the multidisciplinary team or the speech therapist, or studies with animals were excluded.
Selection of articles from the databases
The first selection was made based on reading titles and abstracts. At this stage, two reviewers eliminated articles that did not meet the inclusion criteria. To assess agreement between reviewers, 10% of the publications were compared randomly. Reading the texts in full was necessary when the title and the abstract did not clarify whether the study was relevant to the research question.
In a second step, the reviewers read the pre-selected articles in full, again applying the inclusion and exclusion criteria. There was an agreement between the two reviewers, thus there was no need for a third reviewer. After the selection, a manual search of references of the articles included in the survey was carried out. The representation of the process can be seen in Figure 1, adapted from a systematic review and meta-analysis 1313. Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med [Internet]. 2009 [acesso 29 abr 2021];6(7). DOI: 10.1371/journal.pmed.1000097.
Bias evaluation and methodological risk
To assess the risk of bias, the JBI Critical Appraisal Checklist for Qualitative Research instrument, developed by the Joanna Briggs Institute 1111. Joanna Briggs Institute. Joanna Briggs Institute Reviewers’ Manual. Adelaide: Joanna Briggs Institute; 2008., was used. The items covered by this protocol are: 1) “Is there congruity between the stated philosophical perspective and the research methodology?”; 2) “Is there congruity between the research methodology and the research question or objectives?”; 3) “Is there congruity between the research methodology and the methods used to collect data”; 4) “Is there congruity between the research methodology and the representation and analysis of data?”; 5) “Is there congruity between the research methodology and the interpretation of results”; 6) “Is there a statement locating the researcher culturally or theoretically”; 7) “Is the influence of the researcher on the research, and vice-versa, addressed?”; 8) “Are participants, and their voices, adequately represented?”; 9) “Is the research ethical according to current criteria or, for recent studies, and is there evidence of ethical approval by an appropriate body?”; and 10) “Do the conclusions drawn in the research report stem from the analysis, or interpretation, of the data?”
For each item, four options were admitted: “yes,” “no,” “unclear” and “not applicable.” In the item “overall appraisal,” the options were: “include,” “exclude” or “seek further information” 1414. Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc [Internet]. 2015;13(3):179-87. DOI: 10.1097/XEB.0000000000000062. The nine articles selected were considered eligible to compose the integrative review; therefore, there was no exclusion at this stage. Again, two reviewers applied the checklist, and there was no disagreement between them. It was not necessary to contact authors to request supplementary data for the analysis.
Treatment of collected data
A qualitative evaluation of the publications was carried out in search for similarities or differences, patterns and general trends in how the studies approach the topic studied. The items included in the data collection were: “year,” “author,” “title,” “objective” “keywords”, “decision-making conflicts” and “conclusions” (Chart 1).
Considering the review characteristics, the content analysis technique was adopted, which uses thematic categorization. The application of this technique started with the pre-analysis – planning, organization and floating reading of all the material gathered. Then the articles selected were coded with the help of ATLAS.ti software for Mac, where a report was generated with counting and identification of the codes (subcategories). Based on this report, the content was classified and categorized (Figure 2). Finally, the results were treated, considering the inference and interpretation of these contents and, consequently, the answer to the research question of the integrative review 88. Bardin L. Análise de conteúdo. Lisboa: Edições 70; 2016..
Results and discussion
Bibliometrics of selected articles
Nine articles were selected to compose the integrative review, all written and published in the English language. As there was no limitation on filtering by time, the year of publication varied between 1992 and 2019. The only year that had more than one publication was 2012 (two articles). The restricted number is due to selecting exclusively texts that answered the research question of the review. Other publications related to the topic were identified, but they were outside the scope of this research.
Regarding the nine articles selected, seven are case studies that analyze ethical dilemmas and conflicts in the therapeutic environment 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
16. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96-2020. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547,2222. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189. Two other articles presented models and algorithms for decision-making in care for dysphagic patients 2121. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5,2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838. Five articles are signed by researchers from the United States 1616. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96-2020. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547, country with the greatest volume of publications, followed by Australia, with two publications 2222. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189,1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440, and Canada 2121. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5 and the United Kingdom 2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838, with one publication each. Five journals are specifically focused on speech therapy. The journal with the highest impact factor identified in this integrative review is Dysphagia (impact factor 3.034), with two publications: one in 1992 (case study) and another in 2012 (observational study). Only one journal, Bioethics (impact factor of 1.665), is specific to the bioethics area.
What are the agents involved in decision-making conflicts in speech therapy?
For the categorization of articles – following the content analysis method proposed by Bardin – the reports generated in ATLAS.ti software were used. Three main actors of decision-making conflicts in speech therapy practice (in increasing order of occurrences) were identified: 1) family (18%, 18 occurrences); 2) patient (35%, 36), and 3) health professionals (47%, 48). Within this scope, the subcategories incorporated in the “family” category were “substitute decision maker,” “family-professional relationship” and “family-patient conflicts.” In the “patient” category, there were two main subcategories: “quality of life” and “autonomy” – “decision-making”; the “informed refusal,” “informed consent,” “advance directives” and “living will” subcategories were added to the latter. Finally, in the “health professionals” category, two main subcategories were established: “interprofessional relationship” and “speech therapist’s role,” with the latter including the “paternalism,” “deontology,” “justice,” “beneficence,” “non-maleficence” and “conscientious objection” subcategories (Figure 2).
Conflicts related to speech therapist and health professionals
In the “health professional” category, eight subcategories were included (the percentages in parentheses refer to the occurrence in the corpus): beneficence (19%), speech therapist’s role (17%), justice (15%), interprofessional relationship (15%), deontology (14%), non-maleficence (8%), paternalism (8%), and conscientious objection (4%).
Interprofessional relations must be based on the discussion of cases and the sharing of information, as to avoid misunderstandings. When there is dialogue about how each professional can contribute to the management and the patient’s prognosis, conflicts and confusions are avoided. In the case of a dysphagic patient with no possibility of cure, there will always be many decision-making conflicts over the best way to manage their demands 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440. In short, the relationship between professionals and specialties must be based on the sharing of information so as not to allow confusion and divergences in the treatment of the patient and the management of their needs, respecting the specifics of each case.
In fact, when disagreements occur in the management of dysphagic patients – especially when they refuse specialized speech therapy assessment or treatment –, there is a need for discussing the case between physicians, family members and caregivers. Sharp and Bryant 1717. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578 also reinforce that the team must always communicate and share the deliberations. Information is important to decide the best way to safeguard autonomy and respect the patient’s decisions.
The speech therapist’s role in managing dysphagia is very well defined, reason why this professional has to understand the possible decision-making conflicts and know how to manage the patient’s demands. Many authors emphasize the importance of decision-making being shared between family, patient and multidisciplinary team. The patient’s wishes and desires must be considered so that their autonomy is respected 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
16. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96
20. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
21. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5
22. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189-2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838.
In matters regarding the professional, one can perceive the occurrence of three of the four prima facie principles of principlism: beneficence (always doing good), non-maleficence (never doing evil) and justice (related to distributive justice and the weighting between risks and benefits) 1616. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124,1717. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578,2020. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
21. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5
22. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189-2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838. The speech therapist can use principlism to maintain a balance in health care, always evaluating the specifics of each case to assess which of the four principles is more important than the others. The professional, therefore, must avoid unilateral decisions, which hinder participation and disrespect the patient’s autonomy. This type of decision reinforces paternalism (when the physician or professional makes decisions without the patients’ consent and active participation) 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440,1717. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96
20. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547-2121. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5.
As Bertachini 2424. Bertachini L. Fonoaudiologia e bioética: reflexões (bio)éticas na prática profissional. In: Sganzerla A, Chemim MRC, Rauli PMF, editores. Bioética nas profissões: ciências da saúde e áreas afins. Curitiba: CRV; 2019. p. 79-98. points out, speech therapy manages ethical, human and technical demands, focusing on prevention and intervention in the areas of health, education and research. The speech therapist is qualified to intervene in issues related to human communication that hinder social interaction, family life, learning and people management. One of the mechanisms to avoid these negative impacts is empathic listening, which in turn allows assertive communication, enabling the patient to be a protagonist in decision-making, expressing their feelings and wishes 2424. Bertachini L. Fonoaudiologia e bioética: reflexões (bio)éticas na prática profissional. In: Sganzerla A, Chemim MRC, Rauli PMF, editores. Bioética nas profissões: ciências da saúde e áreas afins. Curitiba: CRV; 2019. p. 79-98..
Bertachini 2424. Bertachini L. Fonoaudiologia e bioética: reflexões (bio)éticas na prática profissional. In: Sganzerla A, Chemim MRC, Rauli PMF, editores. Bioética nas profissões: ciências da saúde e áreas afins. Curitiba: CRV; 2019. p. 79-98. also states that speech therapy and bioethics share the same purposes and principles: confidentiality, privacy, alterity, prudence, vulnerability, acceptance, respect for life, and quality of life. Thus, bioethics is a tool that helps the speech therapist deal with decision-making conflicts.
Another situation that can lead to conflict concerns conscientious objection. The health professional may refuse to perform any procedure out of respect for personal beliefs and values. The concept of morality and what is ethical is well defined, but the understanding can differ from person to person – which generates conflicts in decision-making 1717. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578,1919. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96. In these cases, the patient’s right to autonomy suffers interference and ends up being disrespected.
As deontological documents, the professional code of ethics addresses ethical issues related to care and interactions that involve therapist and patient, service provider and client. In short, deontology concerns the ethical regulation of interprofessional and interpersonal relationships 1616. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96
20. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
21. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5
22. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189-2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838. Thus, the Speech Therapy Ethics Code 2525. Conselho Federal de Fonoaudiologia. Código de Ética da Fonoaudiologia [Internet]. Brasília: Conselho Federal de Fonoaudiologia; 2016 [acesso 10 jan 2020]. Disponível: https://bit.ly/3gClLF5
https://bit.ly/3gClLF5...
, based on the principles of the Universal Declaration on Bioethics and Human Rights 2626. Organização das Nações Unidas para a Educação, Ciência e Cultura. Declaração Universal sobre Bioética e Direitos Humanos [Internet]. Paris: Unesco; 2005 [acesso 27 mar 2021]. Disponível: https://bit.ly/3u5C2pR
https://bit.ly/3u5C2pR...
, also provides the speech therapist with a theoretical basis that can be used to resolve decision conflicts.
Conflicts related to speech therapists and patients
In the “patients” category, seven subcategories were included (the percentages in parentheses refer to the occurrence in the corpus): autonomy (25%), advance directives (25%), informed refusal (14%), living will (14%), quality of life (8%), shared decision-making (8%), and informed consent (6%).
The concept of quality of life determines the well-being of dysphagic patients, and their condition to maintain human dignity and autonomy. The patient can manage their wishes according to their own understanding of what quality of life is and how it impacts their daily life. The concept also relates to functionality, which is highly valued in limiting situations, when the patient is affected by an incurable and progressive disease. In summary, quality of life is a parameter to define behaviors when managing dysphagic patients 1616. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124,2020. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
21. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5-2222. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189.
Respect for autonomy is another principle related to the “patient” category and emerges from the principle proposed by Beauchamp and Childress 2727. Beauchamp TL, Childress JF. Respect for autonomy. In: Beauchamp TL, Childress JF. Principles of biomedical ethics. 8ª ed. New York: Oxford University Press; 2019. p. 99-159.. An autonomous patient is the one capable of making their own choices and expressing their own desires through informed consent, deciding on their well-being, health situation and care process 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
16. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96
20. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547-2121. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5,2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838. The patient may also refuse procedures they deem extraordinary or that may cause more suffering. This refusal, like consent, must be reported 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
16. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96
20. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
21. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5
22. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189-2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838.
Patient autonomy is related to shared decision-making. In this process, to reach a consensus that meets the patient’s needs, deliberation must be based on collaboration and the division of responsibilities 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
16. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96
20. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
21. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5
22. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189-2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838. Article 5 of the Universal Declaration on Bioethics and Human Rights 2626. Organização das Nações Unidas para a Educação, Ciência e Cultura. Declaração Universal sobre Bioética e Direitos Humanos [Internet]. Paris: Unesco; 2005 [acesso 27 mar 2021]. Disponível: https://bit.ly/3u5C2pR
https://bit.ly/3u5C2pR...
clearly states the duty to respect the person’s autonomy, advocating the individual’s independence in deciding what they want for their own life. Shared decision-making aims to safeguard these rights. The speech therapist can help in this process, respecting both the patient’s refusal and consent.
Regarding autonomy, patients can benefit from the advance directives, whose main objective is to ensure that their decisions about whether or not to undergo certain procedures are respected. The Federal Council of Medicine (CFM) 2828. Conselho Federal de Medicina. Resolução CFM nº 1.995/2012. Dispõe sobre as diretivas antecipadas de vontade e dá outras providências. Diário Oficial da União [Internet]. Brasília, p. 269-70, 31 ago 2012 [acesso 27 mar 2021]. Seção 1. Disponível: https://bit.ly/2RdnS7q
https://bit.ly/2RdnS7q...
defines advance directives as a set of wishes, previously and expressly expressed by the patient, about care and treatments that they want, or not, to receive when unable to express, freely and autonomously, their will. This set of wishes of the patient or their legal representative must comply with the Medical Code of Ethics – if there is disagreement, the physician may ignore it.
Advance directives prevail over any other opinion that is not given by the physician, including the family’s. Advance directives must be registered in medical record, and registration with a registry office is optional, given that today its execution by physicians is not guaranteed by law. It is also noteworthy that there are judicial decisions that prevent certain procedures, even with the patient’s express wish. In the absence of advance directives, the physicians can consult the hospital’s clinical bioethics committee, the medical ethics committee or the CFM itself to guide their decisions 2828. Conselho Federal de Medicina. Resolução CFM nº 1.995/2012. Dispõe sobre as diretivas antecipadas de vontade e dá outras providências. Diário Oficial da União [Internet]. Brasília, p. 269-70, 31 ago 2012 [acesso 27 mar 2021]. Seção 1. Disponível: https://bit.ly/2RdnS7q
https://bit.ly/2RdnS7q...
. Finally, it is worth remembering that the patient who registered advance directives can change their decisions at any time 1717. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96-2020. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547. In this way, the patients’ right to express their wishes in advance is assured, anticipating possible situations of inability to decide for themselves.
There are two modalities of advance directive: living will and durable power of attorney. In the living will, the patient registers disagreements and agreements regarding certain medical procedures. In this case, the patient exercises pure autonomy, as advocated by Beauchamp and Childress 2727. Beauchamp TL, Childress JF. Respect for autonomy. In: Beauchamp TL, Childress JF. Principles of biomedical ethics. 8ª ed. New York: Oxford University Press; 2019. p. 99-159., as they actively and consciously participates in decision-making about their care. The durable power of attorney, on the other hand, is a model of substitutive judgment, whereby the patient appoints a prosecutor to decide for them in case of incapacity. These two models can be put together or in different documents, but both have the goal of guaranteeing respect for autonomy. When the patient explains in these documents what they want, it becomes easier to manage the decision-making conflicts 2929. Dadalto L, Tupinambás U, Greco DB. Diretivas antecipadas de vontade: um modelo brasileiro. Rev. bioét. (Impr.). [Internet]. 2013 [acesso 28 mar 2021];21(3):463-76. DOI: 10.1590/S1983-80422013000300011.
In the living will, the patient can register the refusal or desire to suspend extraordinary measures that prolong their life and increase suffering. These measures may include: artificial nutrition and hydration (ANH), mechanical ventilation and resuscitation, especially in palliative or end-of-life care 1717. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18-1919. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96. Much discussed in the literature because of controversies about its benefits, ANH can have legal implications for health professionals 1717. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18-1919. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96. For this reason, based on the medical literature or even with the approval of the patient or substitute decision-maker 2929. Dadalto L, Tupinambás U, Greco DB. Diretivas antecipadas de vontade: um modelo brasileiro. Rev. bioét. (Impr.). [Internet]. 2013 [acesso 28 mar 2021];21(3):463-76. DOI: 10.1590/S1983-80422013000300011, physicians tend to be cautious when suspending ANH.
Conflicts related to speech therapist and family
In the “family” category, three subcategories were included (the percentages in parentheses refer to the occurrence in the corpus): “family and patient conflict” (22%), “professional-family relationship” (39%) and “substitute decision-maker” (39%). In the relationship between family and patient, disagreements are very common. For different reasons, the family often tends to make decisions without including the patient. This may be due, for example, to an attempt to save the patient from knowing their real health condition, or even to disagreements regarding the patient’s choices. Without knowledge of the medical diagnosis or the existing therapeutic possibilities, the patient’s autonomy is compromised 1616. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18-1919. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96,2222. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189. Thus, it is reinforced that the patient has the right to make decisions and be fully respected as a human being.
In the relationship between professional and family, disagreements can be resolved when the professional presents all the possibilities of treatment and interventions, allowing for shared decision-making. The family’s demands provide detailed information about how the patient lived, their habits and preferences, and therefore must be considered. The speech therapist has to be sensitive to the anguish of family members in relation to patient care and record the decisions made at meetings with the family 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
16. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578-1818. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18,2020. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
21. Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5-2222. Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189.
Patients can define a family member or close person to be the substitute decision-maker in the event of an inability to self-manage and decide for themselves. Questions about suspension or refusal of procedures related to feeding can be deliberated by the substitute decision-maker 2929. Dadalto L, Tupinambás U, Greco DB. Diretivas antecipadas de vontade: um modelo brasileiro. Rev. bioét. (Impr.). [Internet]. 2013 [acesso 28 mar 2021];21(3):463-76. DOI: 10.1590/S1983-80422013000300011, who must legislate in favor of the person who instituted it, without confusing their wishes, beliefs and wills with those of the patient 1515. Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
16. Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
17. Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
18. Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
19. Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96-2020. Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547,2323. Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838.
Final considerations
Answering the research question of this integrative review (“What are the main actors in decision-making involving dysphagic patients and the conflicts they face?”), we identified that the speech therapist has to manage decision-making conflicts, which mainly involve three actors: patient, professional, and family. The review also identified possible conflicts (subcategories) related to each of these actors. Such conflicts most often involve the professional and then the patient.
We concluded that attitudinal changes of the multidisciplinary team and caregivers in relation to the dysphagic patient are necessary. The deliberations must involve everyone so that the decision-making is more assertive and safeguards the patient’s autonomy, treating them as the protagonist of their actions and choices.
Family demands should also receive attention, as the family’s distress and lack of information can interfere with patient care, especially in matters related to feeding. It was clear that suspending ANH or administering comfort food for end-of-life patients can generate disagreements between health professionals, family and patients themselves. To avoid conflicts, deliberation must be shared.
We observed that there is no theory or model that the speech therapist can use to resolve ethical conflicts involving the dysphagic patient’s feeding. Ideally, the professional’s clinical decisions are based on good practices and scientific evidence, but few studies discuss the topic. We suggested, therefore, that the Code of Ethics in Speech Therapy and the theoretical framework of bioethics should be used as a support for the resolution of decision-making conflicts.
Referências
-
1Rego S, Palacios M, Siqueira-Batista R. A bioética e suas teorias. In: Rego S, Palacios M, Siqueira Batista R. Bioética para profissionais de saúde. Rio de Janeiro: Editora Fiocruz; 2014. p. 39-62.
-
2Pessini L, Barchifontaine P. Problemas atuais de bioética. 11ª ed. São Paulo: Loyola; 2014.
-
3Brasil. Lei nº 6.965, de 9 de dezembro de 1981. Dispõe sobre a regulamentação da profissão de Fonoaudiólogo, e determina outras providências. Diário Oficial da União [Internet]. Brasília, 10 dez 1981 [acesso 3 mar 2021]. Disponível: https://bit.ly/3e2u6QT
» https://bit.ly/3e2u6QT -
4Brasil. Decreto nº 87.218, 31 de maio de 1982. Regulamenta a Lei n° 6.965, de 09 de dezembro de 1981, que dispõe sobre a regulamentação da profissão de Fonoaudiólogo, e determina outras providências. Diário Oficial da União [Internet]. Brasília, 1982 [acesso 3 mar 2021]. Disponível: https://bit.ly/2PwM6Js
» https://bit.ly/2PwM6Js -
5Conselho Federal de Fonoaudiologia. Resolução nº 492, 7 de abril de 2016. Dispõe sobre a regulamentação da atuação do profissional fonoaudiólogo em disfagia e dá outras providências. Diário Oficial da União [Internet]. Brasília, 18 abr 2016 [acesso 3 mar 2021]. Disponível: https://bit.ly/3vzQgQp
» https://bit.ly/3vzQgQp -
6Costa M. Disfagia oral e/ou faríngea e distúrbios referentes. In: Costa M. Deglutição e disfagia: bases morfofuncionais e videofluoroscópicas. Rio de Janeiro: Medbook; 2013. p. 179-95.
-
7Jotz GP, Dornelles S. Fisiologia da deglutição. In: Jotz GP, Carrara-de-Angelis E, Barros, APB. Tratado de deglutição e disfagia: no adulto e na criança. Rio de Janeiro: Revinter; 2009. p. 16-9.
-
8Bardin L. Análise de conteúdo. Lisboa: Edições 70; 2016.
-
9Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs [Internet]. 2005 [acesso 3 mar 2021];55(5):546-53. DOI: 10.1111/j.1365-2648.2005.03621.x
-
10Cullum N, Ciliska D, Haynes RB, Marks S. Enfermagem baseada em evidências: uma introdução. Porto Alegre: Artmed; 2010.
-
11Joanna Briggs Institute. Joanna Briggs Institute Reviewers’ Manual. Adelaide: Joanna Briggs Institute; 2008.
-
12Souza MT, Silva MD, Carvalho R. Revisão integrativa: o que é e como fazer? Einstein [Internet]. 2010 [acesso 3 mar 2021];8(1):102-6. DOI: 10.1590/s1679-45082010rw1134
-
13Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med [Internet]. 2009 [acesso 29 abr 2021];6(7). DOI: 10.1371/journal.pmed.1000097
-
14Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc [Internet]. 2015;13(3):179-87. DOI: 10.1097/XEB.0000000000000062
-
15Serradura-Russell A. Ethical dilemmas in dysphagia management and the right to a natural death. Dysphagia [Internet]. 1992 [acesso 3 mar 2021];7(2):102-5. DOI: 10.1007/BF02493440
-
16Kirschner KL, Sorties BC. Ethical dilemmas in dysphagia practice. Top Stroke Rehabil [Internet]. 1996 [acesso 3 mar 2021];3(3):87-93. DOI: 10.1080/10749357.1996.11754124
-
17Sharp HM, Bryant KN. Ethical issues in dysphagia: when patients refuse assessment or treatment. Semin Speech Lang [Internet]. 2003 [acesso 3 mar 2021];24(4):285-99. DOI: 10.1055/s-2004-815578
-
18Sharp HM. Ethical issues in the management of dysphagia after stroke. Top Stroke Rehabil [Internet] 2006 [acesso 3 mar 2021];13(4):18-25. DOI: 10.1310/tsr1304-18
-
19Sharp HM, Wagner LB. Ethics, informed consent, and decisions about nonoral feeding for patients with dysphagia. Top Geriatr Rehabil [Internet]. 2007 [acesso 3 mar 2021];23(3):240-8. DOI: 10.1097/ 01.TGR.0000284768.32334.96
-
20Groher ME, Groher TP. When safe oral feeding is threatened: end-of-life options and decisions. Top Lang Disord [Internet]. 2012 [acesso 3 mar 2021];32(2):149-67. DOI: 10.1097/TLD.0b013e3182543547
-
21Kaizer F, Spiridigliozzi AM, Hunt MH. Promoting shared decision-making in rehabilitation: development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team. Dysphagia [Internet]. 2012 [acesso 3 mar 2021];27(1):81-7. DOI: 10.1007/s00455-011-9341-5
-
22Kenny B. Food culture, preferences and ethics in dysphagia management. Bioethics [Internet]. 2015 [acesso 3 mar 2021];29(9):646-52. DOI: 10.1111/bioe.12189
-
23Askren A, Leslie P. Complexity of clinical decision making: consent, capacity, and ethics. Semin Speech Lang [Internet]. 2019 [acesso 3 mar 2021];40(3):162-9. DOI: 10.1055/s-0039-1688838
-
24Bertachini L. Fonoaudiologia e bioética: reflexões (bio)éticas na prática profissional. In: Sganzerla A, Chemim MRC, Rauli PMF, editores. Bioética nas profissões: ciências da saúde e áreas afins. Curitiba: CRV; 2019. p. 79-98.
-
25Conselho Federal de Fonoaudiologia. Código de Ética da Fonoaudiologia [Internet]. Brasília: Conselho Federal de Fonoaudiologia; 2016 [acesso 10 jan 2020]. Disponível: https://bit.ly/3gClLF5
» https://bit.ly/3gClLF5 -
26Organização das Nações Unidas para a Educação, Ciência e Cultura. Declaração Universal sobre Bioética e Direitos Humanos [Internet]. Paris: Unesco; 2005 [acesso 27 mar 2021]. Disponível: https://bit.ly/3u5C2pR
» https://bit.ly/3u5C2pR -
27Beauchamp TL, Childress JF. Respect for autonomy. In: Beauchamp TL, Childress JF. Principles of biomedical ethics. 8ª ed. New York: Oxford University Press; 2019. p. 99-159.
-
28Conselho Federal de Medicina. Resolução CFM nº 1.995/2012. Dispõe sobre as diretivas antecipadas de vontade e dá outras providências. Diário Oficial da União [Internet]. Brasília, p. 269-70, 31 ago 2012 [acesso 27 mar 2021]. Seção 1. Disponível: https://bit.ly/2RdnS7q
» https://bit.ly/2RdnS7q -
29Dadalto L, Tupinambás U, Greco DB. Diretivas antecipadas de vontade: um modelo brasileiro. Rev. bioét. (Impr.). [Internet]. 2013 [acesso 28 mar 2021];21(3):463-76. DOI: 10.1590/S1983-80422013000300011
Publication Dates
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Publication in this collection
6 Sept 2021 -
Date of issue
Apr-Jun 2021
History
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Received
29 Oct 2020 -
Reviewed
25 Mar 2021 -
Accepted
6 Apr 2021