147
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
RECURRENT RESUSCITATION PROCEDURES IN PEDIATRIC
PATIENTS: A BIOETHICAL DISCUSSION ON DYSTHANASIA
Akemi Svaiter Tominaga1
Ana Júlia Rodrigues Bezamat2
Bernardo Teixeira Amarante3
Júlia da Mata Dias Corrêa4
Ronaldo Melo Dias Neto5
Elizabeth Alt Parente6
Lays Costa Silva7
Abstract: The present study refers to a real case report, in which a bioethical analysis is developed,
from the perspective of principlism, in the environment of a pediatric intensive care unit, with the
objective of discussing the dysthanasia practiced in the medical setting and the decision-making
of those involved in this case. A search was performed in the Scientic Electronic Library Online
(SciELO) and PubMed databases for literature review. Dysthanasia consists of a treatment that only
prolongs the pain, making any investment in healing an aggression against the dignity of the human
person. When the patient is a child close to death, the diculty for professionals becomes even greater.
Therefore, it is necessary to pay greater attention to the curriculum, raising discussions and reections
on the subject, in order to train professionals to deal with nitude and play their role of oering
support and comfort, as well as helping families to identify what quality of life means to them and
1 Student of the 10th period of medicine at the Estácio de Sá University (UNESA-IDOMED)
2 Student of the 10th period of medicine at the Estácio de Sá University (UNESA-IDOMED)
3 Student of the 10th period of medicine at the Estácio de Sá University (UNESA-IDOMED)
4 Student of the 10th period of medicine at the Estácio de Sá University (UNESA-IDOMED)
5 Student of the 10th period of medicine at the Estácio de Sá University (UNESA-IDOMED)
6 Pediatrician, Master in Collective Health and Professor at Estácio de Sá University (UNESA-IDOMED)
7 Family and community doctor, master in family health and professor at Estácio de Sá University (UNESA-
IDOMED)
148
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
how it is possible to achieve it.
Keywords: “dysthanasia”; “dysthanasia and children”; “euthanasia, dysthanasia and orthothanasia”;
“pediatric life support”; “Dilemmas na pediatrics”.
INTRODUCTION
Dysthanasia, also known as therapeutic obstinacy, consists of a treatment that only prolongs
pain, making any investment in healing an aggression against the dignity of the human person with the
purpose of, at any cost, postponing death. The Greek prex dis means “estrangement” and thanatos,
“death”. Therefore, dysthanasia means an exaggerated prolongation of a patient’s death. The term can
also be used as a synonym for useless or futile treatment. It is the medical attitude that, aiming to save
the life of the terminal patient, subjects him to great suering (Silva et al., 2021).
The decision to resuscitate a patient who has undergone consecutive interventions in his
illness process and the patient’s desire for recovery at all costs, instead of helping or allowing a natural
death, ends up prolonging his agony (Silva et al., 2021).
When the patient is a child, close to death, the diculty for professionals becomes even
greater, since there is in the collective imagination the idea that “children cannot die”, a fact that, in
turn, is considered natural when it comes to the elderly. Therefore, the approach to death in a child
proves to be more challenging, because the loss is experienced as a triple failure: rst, because they
would not have had the method, the talent, or the skills to save them; second, because, in their social
role as an adult, they were unable to protect her from complications, and third, because they betrayed
the parents who entrusted them with the most valuable asset of their lives. Inevitably, this failure
increases the reactions of grief and intensies the feelings of helplessness, guilt, anger and sadness
presented by the professionals (Barbieri, 2014).
The principle of “best interests” is a key component of policies related to decision-making in
149
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
all areas of medical practice. Often, when a patient lacks autonomy, as is the case with the pediatric
patient, these decisions become more delicate. Therefore, the discussion about medical practice on
how to deal with decision-making is of fundamental importance (Birchley, 2021).
Studies show that children with fatal diseases create immense emotional stress on those
who care for them, whether parents, relatives, hospital sta or doctors. Article 18 of the Statute of
the Child and Adolescent (ECA) says that “It is everyone’s duty to ensure the dignity of children and
adolescents, keeping them safe from any inhuman, violent, terrifying, vexatious or embarrassing
treatment. (...)”. Thus, it is essential that the multidisciplinary health team analyzes the case well so
that the patient does not suer unnecessarily (Barbieri, 2014).
This study aims to present and discuss a real case of dysthanasia in a pediatric patient and its
interface with Bioethics, based on the principlism of Beauchamp and Childress. However, concepts
such as euthanasia, orthothanasia and dysthanasia, with emphasis on the third, added to the bioethical
principles of principlism will be analyzed in the face of a discussion about the autonomy of pediatric
patients and their families in therapeutic decisions.
CASE REPORT
F.G., 3 years old, male, only child with a desired pregnancy, married parents, mother teacher
and father construction assistant, is referred from the hospital in the interior of the state to the pediatric
ICU of the capital, due to dehydration and sepsis, after acute gastroenteritis. He had cardiorespiratory
arrest during transport, and was rescued after 40 minutes in the ICU, in poor general condition, and
requiring cardiocirculatory support, mechanical ventilation and, later, hemodialysis. The infectious
condition evolved with meningitis. After 3 months of evolution, the patient was hemodynamically
stable, but dependent on mechanical ventilation.
The neurological evaluation showed a permanent vegetative state, i.e., dependence on
mechanical ventilation by apnea, without interaction with the environment or the people around
150
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
it, without responses to external stimuli, without spontaneous or reproducible reactions to visual,
auditory or tactile stimuli, without sphincter control, variable preservation of cranial and spinal nerve
reexes, autonomic functions of the hypothalamus and brainstem suciently preserved to survive
with intensive medical and nursing care.
After extensive explanation of the clinical picture and its meaning to the parents, they
opposed any proposal from the medical team, such as a non-resuscitation order in spontaneous
cardiorespiratory arrest, other than full support of organic functions and cardiopulmonary recovery.
Four years have passed since the patient was hospitalized with a tracheostomized patient,
fed by a tube, on mechanical ventilation and with an unchanged neurological condition. He had two
fractures due to osteoporosis and sometimes received chronotropics because he had three severe
episodes of cardiogenic shock.
The historical average length of stay of patients in this ICU is 5.4 days, with this patient
occupying the space of 271 patients. The medical and hospital expenses paid by the health plan are,
on average, R$15,500.00/month (total of R$744,000.00).
METHODOLOGY
This is a qualitative descriptive study, in the format of a real case report, which included
the search for articles indexed in the Scientic Electronic Library Online (SciELO) and PubMed
databases, using the following descriptors: “dysthanasia”; “dysthanasia and children”; “euthanasia,
dysthanasia and orthothanasia”; “pediatric life support”; and “dilemmas in pediatrics”.
In addition to these sources, as listed in the bibliographic references, others were consulted.
However, the selection prioritized articles that met the following criteria:
• Be published in Portuguese, English or Spanish;
• Available in full as scientic articles, including systematic reviews and case reports;
151
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
• Published from 2010 to 2024.
For the construction of the case report, the article by Kipper and Hossne available on the
website of the Bioethics Journal (available at the link: https://revistabioetica.cfm.org.br/index.php/
revista_bioetica/article/viewFile/314/452) was used. The analysis and discussion of the clinical case
were based on the theoretical framework of Bioethics, with emphasis on Principlist Bioethics, as
proposed by Beauchamp and Childress. Additionally, the book Palliative Care in Pediatric Practice
(SOPESP, 2019) and the website of the Regional Council of Medicine of the State of São Paulo
(CREMESP) were used as sources to support bioethical concepts.
DISCUSSION
Clinical Approach
Gastroenteritis
Gastroenteritis is inammation of the lining of the stomach and the large and small
intestines. Its symptoms include anorexia, nausea, vomiting, diarrhea, and abdominal discomfort.
The loss of uids and electrolytes resulting from these symptoms, and their non-replacement, can
cause hemodynamic repercussions in the patient, leading to hypovolemic shock (a state of organ
hypoperfusion that results in dysfunction) or hydroelectrolyte disturbances (the adequate level of
electrolytes in the blood helps the body regulate volume, nerve impulses, muscle contractions, and
acid-base balance). Most cases occur due to infection, but can also be caused by ingestion of drugs or
toxins (Jameson et al., 2020).
152
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
Sepsis
Sepsis is a response of the body to an infection, most often bacterial, that is life-threatening
and causes dysfunction of vital organs. For the diagnosis of sepsis, in addition to the presence of
infection, it is necessary that at least two of the four signs of systemic inammatory response syndrome
(SIRS) are present (Jameson et al., 2020). These signs are:
• Fever (T>38°C) or hypothermia (T<36°C);
• Tachycardia (HR>90 BPM);
• Tachypnea (RF>20 IRPM),
• Hypocapnia (partial pressure of CO2 <32mmHg) or need for ventilatory assistance;
• Leukocytosis (>12000 cells/mm³), leukopenia (<4000 cells/mm³), or left shift (>10%
rods).
Vegetative state
The vegetative state is dened by the prolonged absence of reaction and alertness, caused
by a dysfunction of the cerebral hemispheres, but with sucient preservation to maintain autonomic
reexes, motor reexes, and sleep-wake cycles. Patients may have complex reexes, including eye
movements, yawning, and involuntary movements caused by painful stimuli, but are unable to
demonstrate consciousness (Jameson et al., 2020).
When is intubation and hemodialysis indicated?
Orotracheal intubation is an essential procedure in medical practice, recommended when the
patient has acute respiratory failure, ventilation or inadequate oxygenation, when airway protection
153
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
is necessary in patients with reduced level of consciousness, according to the Glasgow Coma Scale,
with parameter ≤ 8 (Jameson et al., 2020).
Hemodialysis is indicated in cases where the patient has severe refractory hypervolemia
(systemic arterial hypertension), severe metabolic acidosis (pH < 7.2), uremic syndrome (potassium
> 6.5 or changes in the electrocardiogram), and when clinical treatment is refractory. It can be used
in cases of intoxication by drugs and other toxins, azotemia and dysnatremia (Jameson et al., 2020).
Importance of bonding and communication with the family
Eective communication between the doctor and the patient is an indispensable part of a
consultation. However, achieving it is not always a simple task and requires a lot of skill, knowledge,
and empathy on the part of the doctor. Good communication allows the patient to better understand
their condition and follow the therapeutic proposal. This adequate communication, in the medium
term, facilitates the creation of bonds between doctors, health services and patients, which further
promotes adherence to the suggested therapies and improves access to health services, making the
patient feel welcomed and condent in the professionals who work there (Pinto et al., 2010).
In pediatrics, communication has particular characteristics, given that the child is still in
cognitive, psychological and social development. Although the child must be heard, if he or she has
cognitive capacity, decision-making goes through the medical team and his/her guardian, and the
nal consent is given (Gabarra et al., 2010).
In addition, patients in the ICU or with a poor prognosis should have their families well
informed about the condition in which they are, possible outcomes, and conducts to be followed with
the expected course of the disease. Thus, it is up to the physician to clarify the child’s situation as
many times as necessary in front of caregivers and family members, so as not to generate unrealistic
expectations or minimize denial at the time of making dicult decisions (Ferreira et al., 2018).
In the case under discussion, the patient was pediatric and was in the ICU with a poor
154
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
prognosis, so the importance of maintaining good communication with the family is essential,
evaluating the situation from dierent perspectives and in a permanent dialogical process.
Bioethical Approach
Euthanasia
Euthanasia consists of the shortening of an individual’s life with the aim of relieving and
bringing nitude to their suering. This practice is illegal in Brazil, and the Brazilian Code of Medical
Ethics of 1988 contains articles alluding to the subject, contrary to the participation of physicians in
euthanasia (Felix et al., 2013). Currently, euthanasia is allowed in ve Western European countries:
the Netherlands, Belgium, Luxembourg, Spain and Switzerland; in two North American countries:
Canada and the United States, in the states of Oregon, Washington, Montana, Vermont and California;
and in Colombia, the only representative in South America (De Castro et al., 2016).
Orthothanasia
Orthothanasia is also known as “correct death” and “natural death without interference from
science”, that is, in this practice, disproportionate methods are not used to prolong life, such as articial
ventilation and other invasive procedures (Cano et al., 2020). The main objective of orthothanasia is
to promote a dignied death, without postponement and also without causing death. This practice
emphasizes the importance of respecting the patient’s limits and the niteness of life (Felix et al.,
2013).
155
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
Dysthanasia
Dysthanasia, also called therapeutic obstinacy, consists of prolonging the death process,
based on invasive treatments and procedures that aim only to extend the biological life of the patient,
without covering the quality of life, dignity, mental and emotional health of the patient (Felix et al.,
2013).
By correlating the concept of dysthanasia with the case report, it is possible to clearly notice
the prolongation of the child’s death process, promoted by bereaved parents who cannot accept the
reality of their child, who has been in a permanent vegetative state for four years, completely dependent
on articial ventilation, without interaction with the environment and without response to external
stimuli. The maintenance of ineective treatments that painfully prolong biological life, such as full
support of organic functions and cardiopulmonary recovery, a fact reported in the case under study,
culminate in a death without dignity and without quality of life.
It is observed in the case that, after four years in the hospital, even with the numerous
interventions (tracheostomy, nasogastric tube, mechanical ventilation), he remained with an unchanged
condition and still developed fractures due to osteoporosis and needed to receive chronotropics in
order to restore the heart rhythm.
Thus, it is possible to conclude that, by prolonging the biological life of a patient with a non-
reversible condition, it distances itself from the proposal of the principles of humanized medicine and
the very essence of life.
Perspective of Principialism in the case
The clinical case presented here involves several complex bioethical issues, related to the
treatment and medical decisions of a patient who is in a permanent vegetative state. In this sense,
bioethical principles are of paramount importance in an attempt to reduce the exorbitant numbers of
156
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
ethical-professional lawsuits led for iatrogenesis. Therefore, principtive bioethics must be analyzed
in each particular context and understood by health professionals, with the objective of acting for the
benet of the patient, avoiding harm, respecting their rights, and seeking equity (Salomão et al., 2021).
The basic principles of bioethics are benecence, autonomy, non-malecence and justice.
Benecence refers to the ethical obligation to maximize the benet and minimize the harm; autonomy
requires that individuals capable of deliberating on their personal choices should be treated with
respect for their decision-making capacity; Non-malecence establishes that the doctor’s action must
always cause the least harm or harm to the patient’s health - an action that does not cause harm. It
is universally consecrated through the Hippocratic aphorism primum non nocere - rst do no harm,
whose purpose is to reduce the adverse or undesirable eects of diagnostic and therapeutic actions
on human beings and, nally, justice, which establishes equity and impartiality (CREMESP, 2020).
It can be said that dysthanasia violates the bioethical principles of benecence and non-
malecence, since it harms the patient more than maximizes the benets. In a patient with terminal
illness, for example, with no real expectations of improvement, the prolongation of life remains only
bringing him pain and suering. The complexity increases even more when talking about pediatric
patients, in whom the principle of autonomy is exercised by the family.
Autonomy
The term “autonomy” derives from the Greek - autos (one’s own) and nomos (rule, government,
dominion, law). It represents the ability to self-govern, to make one’s own choices, deciding what is
best for one’s quality of life, physical and mental health, as well as for one’s social relationships
(Iglesias, 2019). It is based on presenting, in a clear and transparent way, what is happening to the
subject and the options that biomedical science makes available to him, respecting his decision about
what he understands to be best for him (CREMESP, 2020).
The principle of autonomy applies dierently in pediatrics because, in this case, the caregivers
157
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
decide the actions that will be taken, given that the patients are dependent and vulnerable, with
cognitive and discernment capacities still developing. If the little patient does not have the capacity
to decide on the issues of his own health, then it is up to his parents or guardians to have this right by
proxy , as “substitutes”. Thus, autonomy, in the context of childhood, is replaced by the concept of
best interests, that is, decisions made by parents or legal guardians in the “best interests” of that child
(Pastura, 2018).
In the case cited, the patient’s parents opposed any proposal from the health team, even after
a detailed explanation of their son’s clinical condition. As much as legal guardians have the right to
make decisions for the individual, it is worth noting that this right has limits, especially when they
are considered futile in the treatment, that is, they will not generate any improvement in the clinical
condition.
Benecence
This principle dictates that the doctor will maintain absolute respect for the human being and
will always act for his benet, even after death. He will never use his knowledge to cause physical
or moral suering, for the extermination of human beings or to allow and cover up attempts against
his dignity and integrity, as stated in the Code of Medical Ethics (CEM) in its chapter 1, article VII.
In this context, a comparison can be made with the patient in question, who is in a permanent
vegetative state, with low quality of life, dependent on mechanical ventilation and full support of
organic functions. It is questionable whether prolonging the patient’s life is really benecial, since the
treatments do not have a positive eect on his clinic.
Non-malecence
It is the obligation not to intentionally cause harm or harm to the individual (Beauchamp;
158
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
Childress, 2002). The patient’s permanent vegetative state ensures that no treatment restores the
vitality of his body. With this in mind, the therapies performed can be seen as ineective, prolonging
the life process of an incurable patient.
The context in question implies physical, emotional, psychic and spiritual suering to the
patient, moving away from benecence and non-malecence (Silva et al., 2021). In parallel, it is up to
the doctor to prevent dysthanasia, since the family tends to seek endless treatments to get their loved
one back to life.
Justice
It establishes equity as a fundamental condition; ethical obligation to treat each individual
according to what is morally correct and adequate, to give each what is due to him. Resources should
be evenly distributed, with the aim of reaching the largest number of people assisted with greater
eciency (Beauchamp; Childress, 2002).
The patient in the case has access to resources, however the number of beds that were
occupied only with his hospitalization harmed hundreds of individuals, which makes it impossible
to fully distribute medical care. Thus, the principle of justice, in the bioethical conception, was not
applied equally to all, harming the layer of the population that did not obtain health resources due to
the prolonged hospitalization in question. The average length of stay in the ICU where the patient in
question was admitted is 5.4 days, with the same occupying the space of 271 patients.
FINAL CONSIDERATIONS
Dysthanasia is a practice inuenced by several factors - cultural, religious, ethical, moral,
personal, and also by the professional training of health agents. In this sense, when debating possible
approaches for a patient with no prospect of cure, consensus between the multidisciplinary team, the
159
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
patient, and the patient’s family can be dicult to achieve.
The practice of dysthanasia infringes the bioethical concepts of the Principlist Theory, in the
opposite direction to the Hippocratic aphorism primum non nocere - rst do no harm, whose purpose
is to reduce the adverse or undesirable eects of diagnostic and therapeutic actions. For this reason,
the prolongation of the death process should be strongly discouraged among health professionals.
The multidisciplinary team that accompanies the patient has the role of welcoming, explaining
and guiding the family members about the most appropriate choices for the individual’s physical and
mental well-being, discouraging decisions aligned with therapeutic obstinacy.
In addition, it is the duty of health professionals to understand and deal with the process of
death, death itself and grief, actively supporting family members at all stages. The psychological,
emotional and behavioral spheres must be addressed by a team with professionals from dierent
areas, understanding and respecting the stages of grief.
Therefore, greater attention to the curriculum is needed during professional training, raising
discussions and reections on dysthanasia and its harm to patients and their dignity, enabling health
professionals to discourage this practice before family members. It is also important to address, in
higher education, the complexity of the nitude of life and implement practical scenarios in palliative
wards, so that students can experience a better relationship with death and thus play their role in
helping families identify what quality of life means to them and how it is possible to achieve it.
becoming able to oer the support and comfort they need.
REFERENCES
BARBIERI, A.G. Dysthanasia in children: meanings attributed by physicians in intensive care units.
Master’s dissertation in human development and psychology processes. Federal University of Santa
Maria, RS. 2014.
BEAUCHAMP, T. L.; CHILDRESS, J. F. Principles of Biomedical Ethics. São Paulo: Loyola, 2002.
160
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
BIRCHLEY, G. “The theorisation of ‘best interests’ in bioethical accounts of decision-making.” BMC
medical ethics, v. 22.1 n. 68. jun. 2021.
CANO, C. W. A. et al. Finitude da vida: conceptual understanding of euthanasia, dysthanasia and
orthothanasia. Revista Bioética, v. 28, n.2, p. 376-383, 2020.
CASTRO, M. P. R. et al. Euthanasia and assisted suicide in Western countries: a systematic review.
Revista Bioética, v. 24, n. 2, p. 355-367, 2016.
FEDERAL COUNCIL OF MEDICINE (CFM). Code of Medical Ethics: CFM Resolution No. 2,217,
of September 27, 2018, modied by CFM Resolutions No. 2,222/2018 and 2,226/2019 / Federal Council
of Medicine – Brasília: Federal Council of Medicine, 2019.
FEDERAL COUNCIL OF MEDICINE OF THE STATE OF SÃO PAULO. Code of Medical Ethics.
São Paulo: CREMESP, 2018. Available at: http://www.portalmedico.org.br/novocodigo/. Accessed on:
02 May. 2023.
FELIX, Z. C. et al. Euthanasia, dysthanasia and orthothanasia: an integrative literature review. Ciência
& Saúde Coletiva, v. 18, n. 9, 2013.
FERREIRA, A. C. S. et al. Communication between doctor and patient in the face of the diagnosis.
Interdisciplinary Journal Scientic Thought, v. 4, n. 1, 2018.
GABARRA, L. M. CREPALDI, M. A. The doctor-pediatric patient-family communication from the
perspective of the child. Psicologia Argumento, v. 29, n. 65, p. 209-218, 2011.
JAMESON, J. L. et al. In: Harrison Medicina Interna, v.2. 20a. Edition. Rio de Janeiro: McGrawHill,
2020.
PASTURA, P. S. V. C.; LAND, M. G. P. Dilemmatic Decisions in Pediatrics. DIVERSITATES
International Journal, v. 8, n. 1, 2016.
PINTO, L. M. O. Pediatrician, patient and companion communication: a comparative analysis
between levels of care. Master’s dissertation in human development and health processes. University
of Brasilia, DF. 2010.
161
ISSN: 2763-5724 / Vol. 04 - n 05 - ano 2024
REGO, S., PALACIOS, M., and SIQUEIRA-BATISTA, R. Bioethics and its theories. In: Bioethics for
health professionals [online]. Rio de Janeiro: Editora FIOCRUZ, 2009. Temas em Saúde collection,
pp. 39-62. ISBN: 978-85-7541-390-6.
SOLOMON, M.S. et al. Principialism in the practice of medicine and in ethical-professional processes.
Bioethics Journal, v.29, n.1, p.100-106, 2021.
SILVA, J. A. C. et al. Dysthanasia and orthothanasia: medical practices under the view of a private
hospital. Revista Bioética, Brasília, v. 22, n. 2, p. 358-366, Aug. 2014
SILVA, L. A. et al. Therapeutic obstinacy: when medical intervention hurts human dignity. Revista
Bioética, v. 29. n.1, p. 798-805, 2021.
