EDITORIAL

Considerations about ethical and legal aspects at the

end of life during the COVID-19 pandemic
Ivan Dieb Miziara0 0 -0 0 -0 0 -0 0 ,I,* Carmen Silvia Molleis Galego Miziara0 0 -0 0 -0 0 -0 0 II
I
Medicina Legal, Etica Medica e Medicina Social e do Trabalho, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, SP, BR. II Laboratorio
de Investigacao Medica 40, Instituto Oscar Freire, Hospital das Clinicas HCFMUSP, Faculdade de Medicina, Universidade de Sao Paulo, Sao Paulo, SP, BR.

Miziara ID, Miziara CSMG. Considerations about ethical and legal aspects at the end of life during the COVID-19 pandemic. Clinics (Sao Paulo). 2021;76:e2821
*Corresponding author. E-mail: [email protected]

’ INTRODUCTION carried away by what most people believe is right, because

they may be mistaken; we must reason for ourselves. Finally,
The Sars-CoV-2 pandemic which has plagued the planet we must not do anything that is morally wrong.’’ And, by
and in particular, Brazil, has killed more than 200,000 people obvious deduction, we can say, ‘‘We must do what is morally
so far. It has placed the discussion about some procedures right.’’
to be adopted on the agenda, such as those for when a Starting from the Socratic premise that ‘‘we must not do
patient is approaching the end of their life, bedridden in an the morally wrong,’’ in relation to the ethical issues about the
ICU bed, isolated in an infirmary, and is on their deathbed need to have a dignified death, Levine (3) points out that ‘‘for
but remains alive with their anxieties, uncertainties, and decades, we have been trying to put this ideal into practice.
feelings of abandonment. Undoubtedly, palliative care currently makes a difference for
During the first week of January 2021, the Jornal da USP some people, even though death is still accompanied by
(1) published a report in which students at the boarding unwanted and ineffective interventions, excruciating pain
school of the Faculty of Medicine of the University of and suffering, and loss of personal dignity and autonomy.’’
São Paulo, engaged as volunteers to combat COVID-19, The author also recalls that lawyers have recommended
stimulated a debate on the practices of palliative care in the that people prepare their so-called ‘‘vital wills’’ or ‘‘advance
undergraduate curriculum under the claim that ideally, will guidelines’’ as a precaution against useless and poten-
‘‘such care should start when a person is diagnosed with a tially painful treatments. However, he warns that there are
disease that compromises their life.’’ criticisms about the ‘‘authenticity’’ of these documents (since
Both issues (the right to a dignified death and the the person who signed it is no longer the same person at the
implementation of systematic teaching of palliative care in present moment of a terminal illness), not to mention the
medical education) generate some pertinent reflections legal issue surrounding this whole problem. However, this is
within the tragedy that we are all experiencing. The first of a long and separate discussion that will not be our topic for
these reflections is about how to deal with the end of a now. It is enough to say that the living will or advance will
patient’s life—bringing up primordial issues that are often guidelines are now fully accepted and recommended by the
covered up, such as orthothanasia, dysthanasia, and eutha- Federal Council of Medicine.
nasia—both ethically and legally. From this point of view, it is our impression that the
The second issue that requires reflection concerns the intersection of ethics, bioethics, and legal issues is not new.
point raised by undergraduate medical students about the As Hall and King (4) state, ‘‘in the 1970s and 1980s legal
opportunity for initial palliative care as well as the inclusion disputes over the right to death dominated discussions,
of this discipline in medical curriculum. culminating in the 1990s with the decisions of the American
Regarding the first topic, some observations must be made Supreme Court in the Cruzan (forced feeding) and Glucksberg
a priori. William Frankena (2), a bioethicist at the University (assisted suicide) cases.’’ It is precisely the legal issue, in our
of Michigan, gives us the example of the philosopher opinion, that should require more accurate attention from
Socrates (in one of Plato’s dialogs – ‘‘Críton’’) when he was doctors: what is morally correct is not always legal, or
faced with the opportunity to escape from prison with the protected by law.
help of friends and save himself and his family. ‘‘We must This article aims to present some ethical and medico-legal
not allow ourselves to be dominated by emotions, but to aspects that involve the end of life and to discuss the
follow the best logical and moral reasoning. We must not get pertinence of expanding the teaching of palliative care in
medical education, as well as to discuss the ideal opportunity
to start this practice when the patient faces a real threat
Copyright & 2021 CLINICS – This is an Open Access article distributed under the to life.
terms of the Creative Commons License (http://creativecommons.org/licenses/by/
4.0/) which permits unrestricted use, distribution, and reproduction in any
medium or format, provided the original work is properly cited. ’ ETHICAL, MEDICAL, AND LEGAL ASPECTS
No potential conflict of interest was reported.
Several actions are possible in the face of a terminal illness.
Received for publication on January 27, 2021. Accepted for publica- Each of them has its pros and cons, moral justifications, and
tion on February 11, 2021 legal objections. However, all of them are susceptible to some
DOI: 10.6061/clinics/2021/e2821 form of criticism and potentially capable of generating

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Miziara ID and Miziara CSMG

conflicts between the agents involved (health professionals, However, it is necessary to emphasize that, from a strictly
the patient’s family, and the patient himself or herself). legal point of view, the Brazilian Penal Code, in article
To make matters worse, even within our inner selves, 121 - ‘‘killing someone’’ - punishes the crime of death with a
conflicts can arise and often arouse doubts. penalty of six to twenty years in prison. Even in cases of
Imagine a situation like the one proposed by Hester (5), euthanasia—as discussed in the first paragraph of this
when we are thinking of acting for the benefit of a patient: article—which says: ‘‘If the agent commits the crime
suppose that you consider yourself a good person, raised impelled by reason of relevant social or moral value,’’ the
with good principles of conduct and values, and that you are crime persists, even though the sentence is reduced from
an individual who respects the laws in our country. Sup- one-third to one-sixth, at the discretion of the judge.
pose that you are caring for a terminal patient with metas- In summary, in Brazil, euthanasia is characterized as
tatic cancer, in which all available forms of therapy have homicide, although in a euphemistic way, it can be cataloged
been tried, including the last possible chemotherapy as ‘‘pious homicide.’’ As Genival Veloso Franc¸a (7) rightly
session. This patient is suffering from excruciating pain that states, ‘‘our Code does not accept death out of compassion as
makes their life a burden. In these conditions, moved by your an exclusive form of crime: it only gives the Judge the power
good principles and a spirit of compassion, after obtaining to reduce the sentence.’’
consent from them, you decide to give a dose of lethal In turn, Lippmann (8), establishes that euthanasia is
injection, with the sole purpose of shortening the suffer- defined as ‘‘the realization of death at the request of the
ing of the individual. This action is called active consent patient and, in Brazil, it is prohibited both by law and by
euthanasia (6). medical ethics.’’ Dysthanasia, on the other hand, is ‘‘post-
However, it may be that your patient is in a state of poning death, despite the patient’s suffering,’’ and orthotha-
unconsciousness or semi-consciousness, which does not nasia ‘‘is the possibility of a dignified death, letting nature
allow them to give proper consent and still, you decide to take its course, according to the patient’s wishes and knowl-
give them the same lethal injection. In this case, the action is edge family members.’’
called active non-consenting euthanasia (6). We must remember that orthothanasia, according to
Now imagine another possible situation: your patient, Resolution 1,805/2006 of the Federal Council of Medicine,
who has an irreversible pulmonary condition as a result of does not aim to cause the patient’s death. It is not about
Sars-CoV-2 infection, is under mechanical ventilation, and fighting death with the use of excessive and disproportionate
goes into a coma with acute renal failure and severe technology, nor is it about shortening life through external
hemodynamic instability, characterizing a terminal condi- action. It is characterized, therefore, by the use of palliative
tion. And, just for the sake of illustration, at that moment you care procedures, to bring comfort, relief from pain, depres-
decide not to take any additional therapeutic measures, sion, and other symptoms responsible for the patient’s
knowing that there is nothing more to do for the patient in suffering in this final stretch of life. The first objective,
terms of prognosis. Some authors refer to this act as passive Lippmann (8), ‘‘is to offer maximum comfort to the patient,
euthanasia (6). without any intention of causing death.’’
On the other hand, one can adopt another type of conduct. However, this position is not a challenge. Franc¸a (7)
Due to pressure from family members, or by the conviction argues that it is necessary to ‘‘distinguish what ordinary and
of what your ‘‘doctor’s duty’’ is, you can subject the patient extraordinary procedures mean’’ (or, as Lippmann (8) states,
to some form of renal dialysis, you can increase the number ‘‘excessive and disproportionate technology’’).
of vasoactive drugs, and in this case, this attitude of main- The nature of what is ordinary and what is extraordinary
taining life at any cost, prolonging the patient’s suffering has remained debatable since the 1960s. Emanuel (9) states
with useless measures, is called dysthanasia (6). that ‘‘ordinary means all drugs, treatments, and operations
Still, suppose that same patient develops septicemia and that offer a reasonable hope of benefit to the patient and that
an apperceptive and non-responsive coma, without any can be obtained and used without excessive cost, pain, or
electrical and metabolic brain activity, and you decide not to other inconveniences; while extraordinary means all medica-
adopt any further therapeutic activity, letting the disease run tions, treatments, and operations that cannot be obtained
its inexorable course, maintaining only clinical support and without excessive cost, pain, or other type of inconvenience,
palliative care to avoid further suffering to the patient. This and that, if used, do not bring a reasonable hope of benefit to
act is called orthothanasia (6). the patient.’’
From a moral point of view, it seems to us that both However, this is not necessarily simple. Berlinger et al.
consenting to active euthanasia (although it is illegal) and (10), for example, argue that ‘‘medications and procedures
orthothanasia are fully acceptable in the situations described that are routinely used in hospitals (such as blood transfu-
above. Consented active euthanasia is a way of respecting sions and state-of-the-art antibiotics) do not mean that they
the patient’s autonomy (despite all the contrary arguments should always be used. When the patient’s condition
that may exist, which we respect, and its illegality). Ortho- deteriorates, ‘routine’ procedures and medications can have
thanasia accompanied by appropriate palliative care, on the their benefits reduced or ceased and cause discomfort and
other hand, is a full expression of the Hippocratic principle of suffering.’’
not causing harm to the patient. In our opinion, we believe that even intuitively, we all
Absolutely unacceptable (from a moral point of view) are know how to differentiate, in medical practice, what is usual,
active non-consenting euthanasia (also illegal in our country) common, and which will bring greater comfort to the patient,
and dysthanasia. We must always remember that the from what is futile, out of time, and which will bring greater
doctor’s obligation is to take care of the patient. The cure suffering and pain. In these cases, we firmly believe that the
(or not) often depends on factors outside the doctor’s will: physician’s autonomy must be preserved, and the help of the
the patient, the stage of advancing medical knowledge about palliative care team is essential. If the same terminal cancer
diseases, therapeutic forms, etc. patient, as previously exemplified, requires a tracheostomy

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Miziara ID and Miziara CSMG

and family members refuse (considering the procedure regarding the lack of knowledge about end-of-life issues as
unnecessary and causing prolonged suffering), the doctor well as palliative care among undergraduate students of
may disagree with the family members, since this procedure, medicine.
in addition to being common and necessary, will bring Our population is aging, we have an increased prevalence
greater comfort to the patient. The intermediation of the of chronic diseases, and seems to us that is important in
palliative care team at this time is crucial. bringing competence, skills, and training of future health
In contrast, for patients with irreversible pulmonary professionals in palliative medicine. Palliative care involves
symptoms due to Sars-CoV-2 who require dialysis sessions a multi-professional approach that is patient-centered and
due to the overlapping of renal insufficiency, this procedure requires specific clinical skills. There is a huge list of skills to
should be considered extraordinary as shown above, and be developed among medical students. They have to learn
the issue should be discussed with family members, the the best form of communication with the patient and the
palliative care team, and evaluated from the perspective of family; they have to develop many skills in the quality of
the principle of justice, considering that such a procedure end-of-life care, and learn how to control pain and other
could cause more suffering to the patient, besides being able symptoms. The need to improve education in palliative care
to generate losses to other patients who could benefit from has been well documented worldwide.
dialysis devices, which may have reduced availability in
medical facilities across the country. ’ FINAL CONSIDERATIONS
The COVID-19 epidemic that hit our country violently
’ TEACHING PALLIATIVE CARE
raised questions about various aspects related to end-of-life
According to the World Health Organization (11), ‘‘pallia- issues. Ethical, and legal questions that uncover the lack of
tive care is an approach that improves the quality of life of knowledge of undergraduate medical students regarding
patients (adults and children) and family members when palliative care techniques were raised.
they face problems inherent to a potentially deadly disease.’’ We tried to examine the parameters of legal conduct
As Pegoraro and Paganini (12) state, ‘‘this approach is related within our legal system, and express our point of view on the
to caring for life, regardless of its duration. It intends to moral justification of certain acts, without intending to
rescue the dignity and will of the terminal patient.’’ exhaust the subject that is and will be increasingly the subject
In a previous publication (6), we made it clear that these of in-depth debates, with the sole purpose of improving
procedures go hand in hand with orthothanasia and it is a medical practice.
moral duty of the medical professional – whose primary Regarding the teaching of palliative care in medical
objective, as we said, is to care for the patient, to welcome schools, it is necessary, first, to assess the degree of know-
them, and minimize their suffering. The opportunity to start ledge of the students on the topic, to establish clear learning
this type of care, in our understanding, must also be taken as goals, and to choose appropriate teaching and learning
early as possible in the face of diseases that appear as direct methods. This is a challenge for the future that none of us can
threats to life. ignore.
We believe that with the advancement of technological
means of supporting life and the possibility of keeping a ’ AUTHOR CONTRIBUTIONS
living organism indefinitely with all the ethical consequences
that this entails, it is increasingly important to discuss, Miziara ID wrote the manuscript, with suggestions from Miziara CSMG,
debate, and teach undergraduate students the methods and who also reviewed the content and grammar.
procedures of palliative care. We see such procedures as
complex and requiring specialized action; however, these can ’ REFERENCES
and should still be taught to those who graduate in medicine,
1. Salles S. Cuidados paliativos em pacientes com covid-19 motiva debate
even if they do not become specialists in this or related areas. sobre inclusão da prática no currículo de medicina. Jornal da USP. 2020
As stated by Fonseca and Geovanini (13), ‘‘Talking about Avaiable from: https://jornal.usp.br/universidade/cuidados-paliativos-
death in graduation involves addressing training in skills em-pacientes-com-covid-19-motiva-debate-sobre-inclusao-da-pratica-no-
curriculo-de-medicina/ [Acessed January 2021]
such as communication, teamwork, and family support, in 2. Frankena WK. Ethics. New Jersey: Prentice Hall; 1973. p.1-3.
addition to the control of signs and symptoms, so that 3. Levine C. Analyzing Pandora’s Box, in Eckenwiller LA, Cohn FG, editors.
you can offer quality and end-of-life care and minimize the The Ethics of Bioethics – Mapping the Moral Landscape. Baltimore: The
John Hopkins University Press; 2007. p. 3-23.
suffering of those facing the terminal phase of the disease. 4. Hall MA, King NMP. Legal Methods, in Sugarman J, Sulmasy DP, editors.
The inclusion of palliative care in undergraduate medical Methods in Medical Ethics. Washington DC: Georgetown University
education is an option to be discussed in the current Press; 2010. p.127-143.
5. Hester MD. Ethics By Commitee. Lanhan: Rowman & Littlefield Pub-
curricula so that one can stimulate the specialized technical lishers Inc.; 2008. p.21-23.
capacity in this area of knowledge and spread the care 6. Miziara ID, Miziara CSMGM. Guia de Bolso de Ética, Bioética e Deon-
techniques for any medical specialty.’’ tologia Médica. Rio de Janeiro: Atheneu; 2016. p.141-143
7. Franc¸a GV. Direito Médico. 6a ed. São Paulo: Fundo Editorial Byk 1994.
In order to have an idea of undergraduate students’ lack p.420-41.
of knowledge about topics that involve the terminality of life, 8. Lippmann E. Dysthanasia x Orthothanasia. São Paulo: Jornal do Cremesp.
in a recent study, Pereira et al. (14) demonstrated that only 2015;(328):15.
9. Emanuel EJ. The Ends of Human Life. Cambridge: Harvard University
43% of sixth-year students of a medical school in Goiás
Press; 1991. p.60
knew how to define what was dysthanasia and 74% of these 10. Berlinger N, Jennings B, Wolf SM. The Hastings Center Guidelines For
students reported a deficit in addressing the topic of pallia- Decisions On Life-Sustaining Treatment And Care Near The End of Life.
tive care in medical education. Despite being an isolated New York: Oxford University Press; 2013. p.178
11. Organizac¸ão Mundial de Saude. Cuidados Paliativos. Avaiable from:
example, and obviously with some interpretation bias, we https://www.who.int/es/news-room/fact-sheets/detail/palliative-care.
believe that there is a global representation in these papers [Acessed January 2021]

3
End of life in COVID-19: Ethics and law CLINICS 2021;76:e2821
Miziara ID and Miziara CSMG

12. Pegoraro MMO, Paganini MC. Cuidados paliativos e limitac¸ão de suporte 14. Pereira EAL, Rangel AB, Giffoni JCG. Identificac¸ão do Nível de Con-
de vida em terapia intensiva. Rev Bioet. 2019;27(4):699-710. https://doi. hecimento em Cuidados Paliativos na Formac¸ão Médica em uma Escola
org/10.1590/1983-80422019274353 de Medicina de Goiás. Rev Bras Educ Med. 2019;43(4):65-71. https://doi.
13. Fonseca A, Geovanini F. Cuidados Paliativos na Formac¸ão do Profissional org/10.1590/1981-52712015v43n4rb20180116
da Área da Saúde. Rev Bras Educ Med. 2013;37(1):120-5. https://doi.org/
10.1590/S0100-55022013000100017