Ethical dilemmas in palliative care: a literature review

Abstract

Issues concerning the beginning and end of life are an immense challenge for they involve various concepts related to science and religion, and have humanistic, social, legal, bioethical, and moral character. This study aimed to present the ethical dilemmas experienced by health professionals when facing death. Among the various ethical impasses, the main ones are resource limitations, the difficulty in communication and decision-making. They make us reflect on various end-of-life factors, such as establishing integrated communication, always telling the truth, and understanding non-adherence, discontinuations, and treatment refusals.

Keywords:
Bioethics; Decision making; Terminal care; Health personnel

Resumo

Em qualquer sociedade, assuntos concernentes ao início e fim da vida são imenso desafio, pois envolvem diversos conceitos relacionados a ciência e religião, de caráter humanístico, social, jurídico, bioético e moral. O objetivo deste estudo é apresentar os dilemas éticos explicitados por profissionais de saúde ao enfrentar processos de finitude. Dentre os diversos tipos de dilemas éticos encontrados, os principais perpassam a limitação de recursos, a dificuldade de comunicação e a dificuldade em tomar decisões. Esses dilemas levam a refletir sobre uma série de cuidados necessários, como estabelecer comunicação integrada, sempre dizer a verdade e entender renúncias, descontinuações e recusas ao tratamento.

Palavras-chave:
Bioética; Tomada de decisões; Assistência terminal; Pessoal de saúde

Resumen

En cualquier sociedad, las cuestiones relativas al inicio y al final de la vida constituyen un inmenso desafío, ya que involucran varios conceptos relacionados con la ciencia y la religión, de carácter humanista, social, jurídico, bioético y moral. El objetivo del estudio es presentar los dilemas éticos explicitados por profesionales de la salud cuando están frente a procesos de finitud. Entre los diversos tipos de dilemas éticos encontrados, los principales son los recursos limitados, las dificultades de comunicación y las dificultades para tomar decisiones. Estos dilemas nos llevan a reflexionar sobre una serie de cuidados que debemos emplear en esos procesos de finitud, como establecer una comunicación integrada, decir siempre la verdad y comprender las renuncias, interrupciones y negativas al tratamiento.

Palabras clave:
Bioética; Toma de decisiones; Cuidado terminal; Personal de salud

With their peculiar care model, doctors Cicely Saunders and Elisabeth Kübler-Ross greatly influenced the development of palliative care ¹. According to Doyle and collaborators ², the hospice movement that Sanders idealized opposes the treatment then given to terminal patients, whose suffering was mainly pain, and had elaborating ways to control this symptom as a big concern ³. Created in Great Britain, this new model spread throughout the United States, France, and several other countries, making Saunders the forerunner of palliative care in the world ^4–5.

The World Health Organization (WHO) first defined palliative care in 1986, but the concept was expanded according to local realities and epidemiological profiles, being redefined in 2002 as an approach that improves the quality of life of patients and their families facing (…) life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual⁶.

Matsumoto listed the WHO guiding principles of palliative care: provides relief from pain and other distressing symptoms; affirms life and regard dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient's illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, and should include those investigations needed to better understand and manage distressing clinical complications⁷.

Assistance in palliative care needs to be comprehensive; it includes physical, spiritual, psychological and social aspects, with a careful look and multidisciplinary team ⁸. The team approach allows knowledge exchange and facilitates understanding terminal patients’ fragilities and conditions ^9,10. This is vital in palliative care, as it shows how fundamental each profession is, which individually cannot cover all palliative care nuances – collectivity plays an important role in adequate healthcare ^9,11.

Issues concerning beginning and end of life are an immense challenge, for they involve various concepts related to science and religion, of humanistic, social, legal, bioethical, and moral character ^12,13. Cultural differences lead to different approaches: for instance, Vasconcelos and Pereira ¹⁴ point out that England, Australia and New Zealand are the countries that most invest in palliative care, according to the 2015 Quality of Death Index. Focusing on end-of-life implications, treatment decisions and the process of death are relevant, considering that such ethical dilemmas require reflections that involve the whole society on the most appropriate conducts ^15,16.

For Medeiros and collaborators, the ethical dilemma is permeated by culture, philosophy and values (…). The plurality of different cultural contexts of a society that is constituted by individuals, who rank their values in a singular way based on autonomy, allows constant inquiries about issues that involve life and especially death¹⁷.

Ethical dilemmas encompass two or more therapeutic options or directions appropriate to a given situation, being part of the practice of health professionals, which is susceptible to moral and/or social judgement ^18,19. They generate several concerns, motivating the scientific community to study it incessantly in legal and ethical terms ²⁰. Thus, this article aims to identify in the literature ethical dilemmas health professionals experience when caring for terminal patients.

Method

This study is a literature review of articles available online. We searched several databases: Medical Literature Analysis and Retrieval System Online, Biblioteca Regional de Medicina (Bireme), Scientific Electronic Library Online, and Latin––American & Caribbean Health Sciences Literature. For the search, we used the following keywords in Portuguese and their correspondents in English and Spanish: “bioética,” “bioethics,” “bioética”; “tomada de decisões,” “decision making,” “toma de decisiones”; “assistência terminal,” “terminal care,” “cuidado terminal”; and “pessoal de saúde,” “health personnel,” “personal de salud”. We excluded case reports and studies that, despite presenting the listed descriptors, referred to ethical dilemmas experienced by patients or their families. In total, 51 articles were found, and after applying the criteria, we obtained a sample of 14 articles.

Sources and keywords were selected to focus on articles that referred to ethical dilemmas experienced by health professionals in end-of-life care, without limiting the year of publication. The sample was classified according to authorship, year of publication, title, objective, method, and name of the journal in which it was published. Chart 1 shows the selected articles.

Chart 1
Non-systematic literature review corpus

Author(s)/year	Title	Periodic	Objective	Method
Araújo, Neves; 2003 21	“Bioethics and physiotherapy in intensive care units”	Revista de Fisioterapia da Universidade de São Paulo	Tracing the profile of physiotherapy professionals working in ICU and identifying their opinion on topics such as terminal patients, patient autonomy, euthanasia and dysthanasia.	Field research
Barnitt; 1998 22	“Ethical dilemmas in occupational therapy and physical therapy: a survey of practitioners in the UK National Health Service”	Journal of Medical Ethics	Identify ethical dilemmas experienced by occupational therapists and physiotherapists working in the UK's National Health Service and compare ethical contexts, themes, and principles between the two groups.	Field research
Bélanger, Rodríguez, Groleau; 2011 23	“Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis”	Palliative Medicine	Synthesize the knowledge on shared decision-making process in palliative care.	Literature review
Chih and collaborators; 2016 24	“The changes of ethical dilemmas in palliative care: a lesson learned from comparison between 1998 and 2013 in Taiwan”	Medicine (Baltimore)	Investigate the ethical dilemmas encountered by palliative care physicians and nurses in 2013 and compare the results with a research conducted in 1998.	Field research
Gjerberg and collaborators; 2010 25	“Ethical challenges in the provision of end-of-life care in Norwegian nursing homes”	Social Science and Medicine	Examine the types and prevalence of ethical challenges in end-of-life care.	Field research
Mobasher and collaborators; 2013 26	“Ethical issues in the end of life care for cancer patients in Iran”	Iranian Journal of Public Health	Identify the ethical dilemmas that Iranian oncologists may face in healthcare environment and determine the factors that influence decision-making processes.	Field research
Sorta-Bilajac and collaborators; 2011 27	“How nurses and physicians face ethical dilemmas: the Croatian experience”	Nursing Ethics	Evaluate the ethical dilemmas of nurses and doctors in clinical practice.	Field research
Granero-Moya and collaborators; 2016 28	“Primary care nurses’ difficulties in advance care planning processes: a qualitative study”	Atención Primaria	To understand the difficulties primary care nurses encounter when establishing advance directives of will of the terminally ill.	Field research
Guardia Mancilla and collaborators; 2018 29	“Perceptions of health care professionals about end-of-life care, obstacles and ethical dilemmas in hospitals, primary care and nursing homes”	Anales del Sistema Sanitario de Navarra	Compare professional practice perception and the ethical dilemmas doctors and nurses face in terminal care in health centers, hospitals, and nursing homes.	Descriptive, cross-sectional, and multicenter study
Sánchez-García and collaborators; 2017 30	“Facilitators and barriers regarding end of life care at nursing homes: A focus group study”	Atención Primaria	Identify difficulties and factors faced by professionals working in nursing homes.	Field research
Motta and collaborators; 2016 31	“Decision making in clinical (bio)ethics: contemporary approaches”	Revista Bioética	Identify situations that distress health professionals and/or researchers in clinical practice, and briefly present reflections or approaches related to the decision-making process.	Literature review
Renner, Goldim, Prati; 2002 18	“Ethical dilemmas experienced in physical therapy practice”	Revista Brasileira de Fisioterapia	Identify ethical dilemmas in physiotherapists’ practice.	Field research
Pereira; 2007 32	“Ethical dilemmas related to physiotherapy practice in attendance of children with physical and mental disability”	Master's dissertation	Verify in the professional practice of physiotherapists the ethical dilemmas that guide their therapeutic relationship with children with physical and/or mental disabilities and their family.	Field research
Lorenzo, Bueno; 2013 33	“The interface between bioethics and physiotherapy in Brazilian indexed papers”	Fisioterapia em Movimento	To study the theme and theoretical basis of the indexed articles that intended to discuss the interface between physiotherapy and bioethics.	Literature review

Results and discussion

Gjerberg and collaborators ²⁵ sought to identify ethical challenges and their prevalence in the view of 664 health professionals working in Norwegian nursing homes. The interviewees often pointed out the inadequacy of care due to the scarcity of resources and the disregard for individuals’ autonomy and integrity ²⁵. These observations corroborate the results found by Lorenzo and Bueno ³³, who describe several conflicts in the professional practice of physiotherapists, especially those related to the beginning and end of life, treatment refusal and decision-making when individuals’ autonomy is somehow limited.

Guardia Mancilla and collaborators ²⁹ surveyed 378 Spanish professionals working in hospitals, health centers, and nursing homes, and verified that the most frequent end-of-life ethical dilemmas were related to the use of advance directives of will. Granero-Moya and collaborators ²⁸ investigated the difficulties faced by nurses in primary care in decision-making processes in terminal cases. They found little knowledge on the subject, communication difficulties, lack of time, and poor interprofessional relationship ²⁸.

In a study with Iranian oncologists, Mobasher and collaborators ²⁶ perceived as ethical dilemmas saying the truth, uncertain definition of the patient's state and team-patient relationship. These findings reinforce Motta and collaborators’ ³¹ study, who detected the concerns of health professionals in clinical practice and the difficulty faced in decision-making processes, which are hindered in beginning and end-of-life situations. Two aspects that are difficult for health professionals are delivering bad news and establishing palliative care at the right time ³¹.

Sánchez-García and collaborators ³⁰ identified communication problems of the team with families and lack of incentives for patient participation in the decision-making as the main difficulties professionals experience when caring for older adults living in Spanish nursing homes. For Sorta––Bilajac and collaborators ²⁷, the ethical challenges Croatian doctors and nurses face in their clinical practice concern euthanasia, assisted suicide, and limitation of life-sustaining therapies. In a comparative study, Chih and collaborators ²⁴ described the changes in ethical dilemmas in palliative care between 1998 and 2013 in Taiwan. In 1998 the difficulties were guiding patients, families refusing to take patients home, and omitting the truth from the terminally ill, while in 2013 they were related to resource allocation.

According to Barnitt ²², the ethical issues physiotherapists face are still little known. In their study with professionals of the National Health Service of England, the results indicated unfair allocation and lack of resources, low effectiveness of physiotherapeutic treatment, divergent therapeutic decisions among the team, disregard for patient confidentiality and autonomy, and omission of the truth. The occurrence of ethical challenges prevailed, according to research participants, in the hospital environment ²².

In turn, Renner, Goldim and Prati ¹⁸ identified using a questionnaire that most of the difficulties reported by physiotherapists working in Porto Alegre/RS were based on the limit of professional performance, followed by the omission of truth and lack of resources, and therapy efficiency, drawing attention to the considerable number of answers that reported absence of dilemmas. The result corroborates the study of Pereira ³², who investigated the same professional category, but in the care of children with physical and/or mental disabilities and their family members in the city of Campinas/SP. The author concluded that many of the respondents, most with less than 15 years of experience, are concerned and committed to ethics, but did not identify impasses in their professional performance, but rather everyday issues such as physical therapy discharge ³².

Final considerations

The ethical dilemmas health professionals face in end-of-life situations lead us to reflect on the death process. Examples of healthcare in these cases are integrated communication between professional, patient and family members; the duty to always inform the truth; and the need to understand renunciations, discontinuations, and treatment refusals.

The decision-making process has been one of the main obstacles for health professionals in terminal care, caused mainly by insecurity, lack of training and knowledge on the topic. Other studies are still needed to better evaluate what health professionals consider more relevant when making decisions that involve these dilemmas.

Referências

• ¹
  Menezes RA. Em busca da boa morte: antropologia dos cuidados paliativos. Rio de Janeiro: Garamond; 2004.
• ²
  Doyle D, Hanks G, Cherny N, Calman K. Introduction. In: Doyle D, Hanks G, Cherny N, Calman K, editores. Oxford textbook of palliative medicine. 3ᵃ ed. New York: Oxford University Press; 2003. p. 1.
• ³
  Clark D, Seymour J. Reflections on palliative care. Buckingham: Open University Press; 1999.
• ⁴
  Marinho SO. Cuidados paliativos e práticas de saúde: um estudo sobre a gestão da morte na sociedade contemporânea [tese] [Internet]. Rio de Janeiro: Universidade do Estado do Rio de Janeiro; 2010 [acesso 13 fev 2019]. Disponível: https://bit.ly/3jChMam
  » https://bit.ly/3jChMam
• ⁵
  Pessini L. Cuidados paliativos: alguns aspectos conceituais, biográficos e éticos. Prat Hosp. 2005;(41):107-12.
• ⁶
  Palliative care. World Health Organization [Internet]. c2020 [acesso 2 dez 2020]. Tradução livre. Disponível: https://bit.ly/3jD6zGi
  » https://bit.ly/3jD6zGi
• ⁷
  Matsumoto DY. Cuidados paliativos: conceito, fundamentos e princípios. In: Carvalho RT, Parsons HA, organizadores. Manual de cuidados paliativos ANCP. 2ᵃ ed. Rio de Janeiro: ANCP; 2012. p. 23-30. p. 26.
• ⁸
  Hermes HR, Lamarca ICA. Cuidados paliativos: uma abordagem a partir das categorias profissionais de saúde. Ciênc Saúde Coletiva [Internet]. 2013 [acesso 24 abr 2019];18(9):2577-88. DOI: 10.1590/S1413-81232013000900012
  » https://doi.org/10.1590/S1413-81232013000900012
• ⁹
  Reis LC Jr, Reis PEAM. Cuidados paliativos no paciente idoso: o papel do fisioterapeuta no contexto multidisciplinar. Fisioter Mov [Internet]. 2007 [acesso 24 abr 2019];20(2):127-35. Disponível: https://bit.ly/33CbDoS
  » https://bit.ly/33CbDoS
• ¹⁰
  Girão M, Alves S. Fisioterapia nos cuidados paliativos. Salutis Scientia [Internet]. 2013 [acesso 24 abr 2019];5:34-41. Disponível: https://bit.ly/3nk672d
  » https://bit.ly/3nk672d
• ¹¹
  McCoughlan MA. Necessidade de cuidados paliativos. O Mundo da Saúde. 2003;27(1):6-14.
• ¹²
  Almeida M. Considerações de ordem ética sobre o início e o fim da vida [tese]. São Paulo: Faculdade de Medicina da Universidade de São Paulo; 1988.
• ¹³
  Medeiros MB, Pereira ER, Silva RMCRA, Silva MA. Dilemas éticos em UTI: contribuições da teoria dos valores de Max Scheler. Rev Bras Enferm [Internet]. 2012 [acesso 20 jul 2020];65(2):276-84. DOI: 10.1590/S0034-71672012000200012
  » https://doi.org/10.1590/S0034-71672012000200012
• ¹⁴
  Vasconcelos GB, Pereira PM. Cuidados paliativos em atenção domiciliar: uma revisão bibliográfica. Rev Adm Saúde [Internet]. 2018 [acesso 24 abr 2019];18(70). DOI: 10.23973/ras.70.85
  » https://doi.org/10.23973/ras.70.85
• ¹⁵
  Mesquita AAB, Marangão VP. A equipe multiprofissional diante do processo de morte e morrer da criança hospitalizada [monografia]. Campos Gerais: Faculdade de Ciências da Saúde de Campos Gerais; 2008.
• ¹⁶
  Paiva FCL, Almeida JJ Jr, Damasio AC. Ética em cuidados paliativos: concepções sobre o fim da vida. Rev. bioét. (Impr.) [Internet]. 2014 [acesso 24 abr 2019];22(3):550-60. DOI: 10.1590/1983-80422014223038
  » https://doi.org/10.1590/1983-80422014223038
• ¹⁷
  Medeiros MB, Pereira ER, Silva RMCRA, Silva MA. Op. cit. p. 277.
• ¹⁸
  Renner AF, Goldim JR, Prati FM. Dilemas éticos presentes na prática do fisioterapeuta. Braz J Phys Ther. 2002;6(3):135-8.
• ¹⁹
  Chaves AAB, Massarollo MCKB. Percepção de enfermeiros sobre dilemas éticos relacionados a pacientes terminais em unidades de terapia intensiva. Rev Esc Enferm USP [Internet]. 2009 [acesso 24 abr 2019];43(1):30-6. DOI: 10.1590/S0080-62342009000100004
  » https://doi.org/10.1590/S0080-62342009000100004
• ²⁰
  Junges JR, Cremonese C, Oliveira EA, Souza LL, Backes V. Reflexões legais e éticas sobre o final da vida: uma discussão sobre a ortotanásia. Rev. bioét. (Impr.) [Internet]. 2010 [acesso 24 abr 2019];18(2):275-88. Disponível: https://bit.ly/3nwwnGL
  » https://bit.ly/3nwwnGL
• ²¹
  Araújo LZS, Neves WA Jr. A bioética e a fisioterapia nas unidades de terapia intensiva. Rev Fisioter Univ São Paulo [Internet]. 2003 [acesso 18 ago 2018];10(2):52-60. Disponível: https://bit.ly/30FOkbN
  » https://bit.ly/30FOkbN
• ²²
  Barnitt R. Ethical dilemmas in occupational therapy and physical therapy: a survey of practitioners in the UK National Health Service. J Med Ethics [Internet]. 1998 [acesso 22 out 2020];24(3):193-9. DOI: 10.1136/jme.24.3.193
  » https://doi.org/10.1136/jme.24.3.193
• ²³
  Bélanger E, Rodríguez C, Groleau D. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliat Med [Internet]. 2011 [acesso 10 jan 2019];25(3):242-61. DOI: 10.1177/0269216310389348
  » https://doi.org/10.1177/0269216310389348
• ²⁴
  Chih AH, Su P, Hu WY, Yao CA, Cheng SY, Lin YC, Chiu TY. The changes of ethical dilemmas in palliative care: a lesson learned from comparison between 1998 and 2013 in Taiwan. Medicine [Internet]. 2016 [acesso 24 abr 2019];95(1):e2323. DOI: 10.1097/MD.0000000000002323
  » https://doi.org/10.1097/MD.0000000000002323
• ²⁵
  Gjerberg E, Førde R, Pedersen R, Bollig G. Ethical challenges in the provision of end-of-life care in Norwegian nursing homes. Soc Sci Med [Internet]. 2010 [acesso 24 abr 2019];71(4):677-84. DOI: 10.1016/j.socscimed.2010.03.059
  » https://doi.org/10.1016/j.socscimed.2010.03.059
• ²⁶
  Mobasher M, Nakhaee N, Tahmasebi M, Zahedi F, Larijani B. Ethical issues in the end of life care for cancer patients in Iran. Iran J Public Health [Internet]. 2013 [acesso 24 abr 2019];42(2):188-96. Disponível: https://bit.ly/3d90AGP
  » https://bit.ly/3d90AGP
• ²⁷
  Sorta-Bilajac I, Baždarić K, Žagrović MB, Jančić E, Brozović B, Čengić T et al How nurses and physicians face ethical dilemmas: the Croatian experience. Nurs Ethics [Internet]. 2011 [acesso 24 abr 2019];18(3):341-55. DOI: 10.1177/0969733011398095
  » https://doi.org/10.1177/0969733011398095
• ²⁸
  Granero-Moya N, Frías-Osuna A, Barrio-Cantalejo IM, Ramos-Morcillo AJ. Dificultades de las enfermeras de atención primaria en los procesos de planificación anticipada de las decisiones: un estudio cualitativo. Aten Primaria [Internet]. 2016 [acesso 24 abr 2019];48(10):649-56. DOI: 10.1016/j.aprim.2016.01.008
  » https://doi.org/10.1016/j.aprim.2016.01.008
• ²⁹
  Guardia Mancilla P, Montoya-Juarez R, Marti-Garcia C, Herrero Hahn R, García Caro MP, Cruz Quintana F. Percepciones de los profesionales sobre la atención prestada, obstáculos y dilemas éticos relacionados con el final de la vida en hospitales, centros de atención primaria y residencias de ancianos. An Sist Sanit Navar [Internet]. 2018 [acesso 24 abr 2019];41(1):35-46. DOI: 10.23938/ASSN.0170
  » https://doi.org/10.23938/ASSN.0170
• ³⁰
  Sánchez-García MR, Moreno-Rodríguez M, Hueso-Montoro C, Campos-Calderón C, Varella-Safont A, Montoya-Juárez R. Dificultades y factores favorables para la atención al final de la vida en residencias de ancianos: un estudio con grupos focales. Aten Primaria [Internet]. 2017 [acesso 24 abr 2019];49(5):278-85. DOI: 10.1016/j.aprim.2016.09.004
  » https://doi.org/10.1016/j.aprim.2016.09.004
• ³¹
  Motta LCS, Oliveira LN, Silva E, Siqueira-Batista R. Tomada de decisão em (bio)ética clínica: abordagens contemporâneas. Rev. bioét. (Impr.) [Internet]. 2016 [acesso 24 abr 2019];24(2):304-14. DOI: 10.1590/1983-80422016242131
  » https://doi.org/10.1590/1983-80422016242131
• ³²
  Pereira RAB. Dilemas éticos ligados à prática do fisioterapeuta no atendimento da criança com deficiência física ou mental [dissertação] [Internet]. São Paulo: Universidade Presbiteriana Mackenzie; 2007 [acesso 6 out 2020]. Disponível: https://bit.ly/3d4m0oA
  » https://bit.ly/3d4m0oA
• ³³
  Lorenzo CFG, Bueno GTA. A interface entre bioética e fisioterapia nos artigos brasileiros indexados. Fisioter Mov [Internet]. 2013 [acesso 24 abr 2019];26(4):763-75. DOI: 10.1590/S0103-51502013000400006
  » https://doi.org/10.1590/S0103-51502013000400006

Publication Dates

• Publication in this collection
  20 Jan 2021
• Date of issue
  Oct-Dec 2020

History

• Received
  26 Aug 2019
• Reviewed
  23 July 2020
• Accepted
  29 July 2020