How to cite this article: Márquez-González H, Valdez-Martínez E. Controversy in the treatment of a critically ill neonate in a rural health service. Rev Med Inst Mex Seguro Soc. 2015;53(5):638-42.
Received: 22/10th 2014
Accepted: January 30th 2015
Horacio Márquez-González,a Edith Valdez-Martínezb
aDepartamento de Cardiopatías Congénitas, Hospital de Cardiología, Centro Médico Nacional Siglo XXI
bCoordinación de Investigación en Salud
Instituto Mexicano del Seguro Social, Distrito Federal, México
Communication with: Horacio Márquez-González
Telephone: (55) 5627 6900, extensión 2254
Cardiopulmonary resuscitation of newborns with perinatal hypoxia faces serious ethical, moral, medical and legal problems, particularly in rural areas. Ethical and moral issues have to do with the medical-parents relationship; with values, preferences and priorities of each of these groups; and with the scarce resources situation. Medical-technical problems are related to asphyxia complications, and their prognostic and therapeutic implications. Legal considerations arising from the fact of killing or letting die. In this article is analyzed the real case of a neonate with severe perinatal hypoxia in order to enhance the understanding of the incorporation of ethics in everyday clinical practice.
Keywords: Clinical ethics, Newborn infant, Asphyxia neonatorum, Rural health services, Mexico
In Latin American countries, poverty reaches frequencies greater than 66%1 of the total population; its main manifestations are: scarcity and poor quality food, and low educational and health levels. Within this context the case of the baby Mercedes is presented, who was born and was treated at a rural hospital in Chiapas state bordering Guatemala, where languages such as XhoI, Maya, Tzeltal and Tzotzil are still spoken; the average education is 6 years, and 16% are illiterate.2 Mercedes suffered prolonged perinatal hypoxia and survived 27 days with complications secondary to perinatal asphyxia and her parents’ late decision to continue timely medical treatment. Some have criticized the decision of the hospital medical staff to try to maintain the life of the patient; while others have criticized the position of the parents, letting Mercedes die arguing the lack of resources to address the complications of the girl. The purpose of this article is to present a brief review of the case and examine the ethical and medical issues that arise.
Mercedes was the tenth birth of a mother who was 39 years old, illiterate, engaged in the informal sale of vegetables planted in her garden; this was the second pregnancy with their third partner. She had never accepted the use of contraceptive methods because of her belief that "you stop being a woman." The monitoring of the pregnancy was irregular, for failure to attend appointments. She presented with gestational diabetes and vaginal infections. In the 38th week of pregnancy the mother was scheduled to resolve the pregnancy abdominally because Mercedes was large for gestational age, but she did not show up. At week 41, at home, she began labor with delivery of the head of the baby through the birth canal and trapping the shoulders, and after the midwife performed maneuvers that failed for 10 minutes, the mother was taken to the hospital where the baby was born by dystocia delivery and in cardiopulmonary arrest. The pediatric resuscitation was performed as recommended in the manual of neonatal resuscitation of the American Heart Association.3 Within 20 minutes Mercedes managed to regain a heart rate over 100 beats per minute, and, not showing respiratory effort, it was decided to assist her with mechanical ventilation.
The term futility refers to the act of attempting, by some curative treatment, to benefit the patient, which, based on reason, scientific evidence, and clinical experience, has a high probability of failure.4 The odds of survival for Mercedes at the moment of stopping resuscitation was less than 10%,5 with estimated irreversible brain damage up to 50%6 and of other organs (brain, heart, intestines, etc.) secondary to prolonged hypoxia. However, with proper and timely treatment, the prognosis for survival improves to reach 91% in necrotizing enterocolitis,7 60% in non-oligoanuric renal failure,8 and 70% in heart failure secondary to hypoxic myocarditis.9 According to the CRIB II (Clinical Risk Index for Babies Score), the calculated probability of Mercedes’ survival was greater than 60%.10 Therefore, although the brain damage was irreversible, the expected survival prognosis, given the recovery of vital organs (heart, kidney, intestine), was greater than 50%. But Mercedes’ case was framed in a context of severe limitations both of family and hospital that negatively affected her healthcare. All this raises the question: should resuscitation efforts not have been given on the grounds physiological futility, both to avoid further suffering of the newborn and spending scarce resources on healthcare? One must also consider that waiver of medical intervention may constitute an act of negligence.11
Coming back to the story of Mercedes, the attending pediatrician had serious limitations of resources, so that due to the apparent severity of the newborn’s condition, he expressed to her mother that it was urgent to move to Mercedes to the closest third-level hospital, seven hours away; if she had moved immediately, the prognosis of survival would have been 50%12 with a probability of severe and irreversible neurological sequelae greater than 80%.13 The mother did not accept the transfer of the newborn; thus, during the first 24 hours of life, Mercedes had seizures and was diagnosed with necrotizing enterocolitis stage IIB and hypoxic myocarditis. Within 48 hours of life she presented increased renal failure, decreased ventilatory contributions and acid-base balance, to which was added the probable diagnosis of intraventricular hemorrhage. Given the bewildering array of medical complications secondary to perinatal hypoxia, was it reasonable to argue probabilistic futility? The probabilistic sense of futility supported by scientific evidence and contextual factors collaborated unfailingly in the understanding that getting treatment would only prolong her death painfully and agonizingly.
Several contextual factors were significant; on the one hand, the mother did not accept the timely transfer of Mercedes to a tertiary hospital, telling social work: "there is no money", "if it were a baby boy her partner would probably want to accompany him to another hospital", "conditions of her home are extremely poor", "her older daughters could not stay with her current partner because of previous history of attempted rape."
On the other hand, the father of Mercedes at one point asked for the neonate to be discharged; when he was denied by doctors, the man came a second time requesting that Mercedes be taken off the ventilator, arguing that given the poor outcomes and high possibility of consequences, no family member would have the ability and time to care for a disabled child. Given the position of the parents, the case was referred to the district attourney.
With the intervention of the legal authorities, with Mercedes at 72 hours of life, both parents visited her for the first time, and agreed to move her to the Hospital de Especialidades. Mercedes was given the diagnosis of intraventricular hemorrhage and given a ventricular peritoneal (VP) shunt system. On the 27th day of hospital stay she was diagnosed with sepsis and ependymitis; then, the medical team decided to externalize the VP shunt system, and during the surgery tried to place a central venous catheter, accidentally causing traumatic pneumothorax, which caused cardiac arrest and the death of the child.
The parameters of the medical indications in addition to the clinical data to be processed, bring additional questions: How far should we fight for the survival of Mercedes? What consequences and risks are tolerable in an attempt to save her?
Assessments of quality of life are subjective, since they reflect the beliefs, values, likes and dislikes of who issues the judgment.14 Therefore, prudent acting supported by objective evidence is required to establish criteria of quality of life. Jonsen15 offers three different levels of quality of life: limited (situation where someone suffers severe deficits of physical and mental health), minimal quality of life (when there is probabilistic futility) or less than minimal (i.e. vegetative state). During the first 48 hours of life, Mercedes fit the criteria for minimum quality of life, so that medical interventions were designed to prolong life. The ethical controversy that arises is whether that quality justified maintaining life. Based on history and clinical course of patients we conclude that during the first hours of life it was ethically permissible to refrain from further curative treatment of Mercedes. It was therefore ethically permissible to not have continued treatment. There was no obligation, for there was a high probability medical complications, as happened in the story of Mercedes.
In Western medicine the idea that all human life is invaluable persists, regardless of age, socioeconomic status or disability; no matter if letting someone die serves a good purpose.16 However, in exceptional situations it might be right, particularly if an innocent human being has no future because they will die soon (considering the circumstances). In clinical practice, there are no moral absolutes, except a mandate to act in the best interest of the patient. Thus, when quality of life is so poor that aggressive interventions and intensive care generate more harm than good to the patient, it is justified to withhold or withdraw treatment in newborns with certain problems. In line with the above, the limitation of treatment (i.e., not initiating or discontinuing treatment or both) would be a good way to regulate medical interventions where treatment would only prolong the process of death.16 The limitation of treatment does not imply the abandonment of sick person.11 In the case of Mercedes, there are justifiable, objective criteria of costs and benefits, including the immediate damage, inconvenience, the risk of severe brain injury, and a number of injuries, all of them already mentioned, that determine the relevance of the limitation of therapeutic effort to avoid obstinacy in treatment.17,18
The criterion of the "best interest" lies below the arguments for or against the treatment for the survival of Mercedes. This approach pursues the welfare of the individual, assessing the risks and benefits of treatment options, considering the pain, suffering, and evaluating the chances of recovery or loss of function.
Interest may be divided based on the objective pursued:19 physiological (necessities for survival: oxygen, water, food); physical and emotional (affective relationships, security); emotional (family, friends), and cognitive development (tools, such as education, that promote the acquisition of skills that ensure their independence). In the case of Mercedes, given the success of resuscitation, the medical interest that was immediately pursued was physiological (for the management of complications due to asphyxia) to improve the prognosis of life, but not the function, because her quality of life would be ruined by injuries to the brain and other subsidiary bodies to perinatal hypoxia.
Mercedes was part of a social group, her family, who had serious contextual issues, so the actual weight of her sequelae would prevent compliance with the criterion of the "best interest".20 In this regard, some authors point out, also, the importance of assessing the degree of involvement of the family in relation to the expected benefit of its patient.21 The latter does not mean confusing the quality of life of Mercedes with the value of her life to her family.
World literature16 has shown that, in some cases, letting a patient die involves as many ethical problems as the act of killing. An example is the case under consideration, which makes clear that it is not the mere distinction between acting and not acting, but rather the conditions in which the actions and omissions are made. In this case there were justifiable criteria for the costs and benefits that made clear that nonmaleficence should have prevailed over other ethical principles. The justification for this claim is not that the doctor should have done nothing, but that weighing the benefits generated, for this particular patient insisting on medical treatment to prolong survival, did not justify the burden and damages that they imposed on Mercedes, considering her situation and quality of life. A possible objection to this argument is that accepting not giving or discontinuing medical treatment to prolong survival in neonates with perinatal hypoxia easily can open the door to the slippery slope that leads eventually to justifying the death of newborns with perinatal problems in rural areas. Although slippery slope arguments are considered difficult to assess because they are speculative,16 however, it is vital to keep in mind the real possibility of opening the slippery slope; so we emphasize the need to act prudently in decision-making at the end of life, always considering all the consequences of different options.
In weighing the ethical principles in the case of Mercedes, there are justifiable criteria of costs and benefits that make it obvious that nonmaleficence properly should have prevailed over other ethical principles. The principles of beneficence and non-maleficence require doctors first to evaluate the potential benefits and purposes of the proposed intervention relative to its risks and results. To these reasonable conclusions a condition must be added. If rural areas do not receive sufficient funds to provide adequate medical care, preventive care should be strengthened to make it more effective and efficient, and thus the elimination of critical cases such as Mercedes.
Conflict of interest statement: The authors have completed and submitted the form translated into Spanish for the declaration of potential conflicts of interest of the International Committee of Medical Journal Editors, and none were reported in relation to this article.