ORIGINAL ARTICLE

http://dx.doi.org/10.5546/aap.2016.eng.298

Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics

 

Jorge O. Selandari, M.D.^a, María S. Ciruzzi, M.D.^a, Adriel J. Roitman, M.D.^b, Fernanda Ledesma, M.D.^a, Célica Menéndez, M.D.^a and Hernán O. García, M.D.^a

a. Hospital Ethics Committee. Hospital de Pediatría SAMIC "Prof. Dr. Juan P. Garrahan".
b. Grant holder. School of Law. Universidad de Buenos Aires.

E-mail address: Jorge O. Selandari, M.D.: jselandari@intramed.net

Funding: This research study was conducted with the support of the Ramón Carrillo-Arturo Oñativia Continuing Education Scholarship, granted by the National Ministry of Health of Argentina through the Health Research Committee (Comisión Nacional Salud Investiga).

Conflict of interest: None.

Received: 5-20-2015
Accepted: 2-10-2016

 

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ABSTRACT

Introduction. The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support techniques that would only extend an irreversible process and result in physical and psychological damage and harm their dignity. On the other side, withholding or withdrawing life support without an adequate reflection and diagnostic-therapeutic effort which may lead to the death of a potentially recoverable child. In addition, making decisions in this context implies facing barriers that hinder the possibility of pursuing the patient's best interest. Among such barriers, the fear of litigation plays a major role. To what extent is this fear justified?
Objective. To explore the opinions of the members of the National Judiciary regarding the approach to withholding or withdrawing of life support from a legal stance.
Population and methods. Professionals working in the criminal, civil and forensic medicine settings. Semistructured survey on three hypothetical case histories that implied making a decision to withhold or withdraw life support.
Results. One hundred and eighty-five surveys were distributed; 68 (36.76%) were partially completed and 51 (30.3%), in full. Twenty-eight (55%) survey respondents did not criminalize any of the three cases presented. Thirteen (25%) respondents considered that the decisions made in the three cases constituted a crime; 6 (12%), only in one case; and 4 (8%), in two out of the three. Crimes described by survey respondents included intentional homicide, wrongful death, and failure to render assistance.
Conclusions. Forty-five percent of survey respondents considered that decisions made involved some form of crime.

Key words: Pediatric intensive care unit; Withholding treatment; Decision-making; Ethics; Legislation and jurisprudence.

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INTRODUCTION

Medical science development, in its technological phase, has resulted in the emergence of technologies that allow sustaining life to an extent that was unthinkable not long ago. The need to limit this practice posed by the exercise of certain rights (autonomy, dignity, quality of life), the obligation to avoid causing harm (therapeutic obstinacy or patient neglect), and the increasing active role played by patients and/or their family in the health care relationship make it necessary to consider how to solve these problems without harming the patient nor questioning the responsibility of health care team members. In terms of bioethics, the prevailing concept is that not everything that is technologically feasible is ethically correct. What is the approach to this matter according to the Argentine civil and criminal law? Is withholding/withdrawing of life support (WLS) legally allowed in pediatrics? Does WLS require a legal authorization in pediatrics? Is WLS in a pediatric patient a crime?

OBJECTIVE

To explore the opinion of members of the National Judiciary (NJ) regarding the approach to WLS from a legal stance.

POPULATION

Professionals working in the criminal, civil and forensic medicine settings.

METHODS

Descriptive, cross-sectional, qualitative, quantitative, explorative

study with a diagnostic analysis. The instrument used in this study was a semistructured, anonymous survey, which included an informed consent (available in the online Annex),administered by the grant holder and/or self-administered by research subjects themselves. The survey structure was as follows:

a. Personal and professional background.

1. Demographic data.

2. Professional training.

3. Religious background.

b. Case and conceptual background.

c. Case history analysis:

The survey described three hypothetical cases based on situations generally faced by the pediatric health care team, and classified into three categories commonly typified in the ethical analysis of these situations. The first case was the "no chance" situation. The second case was the "unbearable" or extremely poor quality of life situation. Finally, the third case described a patient in a persistent vegetative state.¹ In addition, it was explained that all cases took place in a context of a good relationship, understanding and agreement among the medical team and the patient's family.

Definition of each category

1. No chance situation: Treatment will merely delay death, without significantly relieving suffering.

2. Unbearable situation: In the face of progressive disease, additional treatment may only cause further suffering, despite the possibility that it might have some potential benefit on the underlying condition.

3. Persistent vegetative state: Medical condition characterized by the absence of voluntary interaction with the outside world, lack of awareness of the inner world, with no reasonable possibility of recovery after 12 months of assistance. The patient feels no pain and has no consciousness, but a sleep-wake cycle is present, and the patient is capable of making automatic gestures (smiling, wincing, etc.) but there is no recognizable relation to stimuli.

Table 1 is a transcription of the three hypothetical case histories included in the survey.

Table 1. Hypothetical cases described in the survey

Case 1. No chance situation Mariela was an 11-year-old girl with acute myeloid leukemia. The intention had been to perform bone marrow transplantation after chemotherapy. She tolerated treatment poorly and developed sepsis (severe systemic infection) and difficult breathing. She was intubated and connected to a ventilator in the intensive care unit, but her condition continued to deteriorate and required progressively increasing ventilator settings. In spite of chemotherapy, leukemia was still active, which in her present context indicated a situation with no reasonable chances of recovery. Physicians and parents agreed not to escalate life support (e.g., use of ventilator, dialysis or invasive procedures, such as catheterization, etc.) or start cardiopulmonary resuscitation in the event of a cardiac arrest. Mariela had multiple organ failure, cardiac arrest and died; cardiopulmonary resuscitation was not attempted.

Case 2. Unbearable or poor quality of life situation A first-time mother went into labor at 41 weeks of gestation and required an emergency C-section. She delivered a 2700 g male infant named Ramón, who was relatively small for his gestational age. The baby was not breathing; he was resuscitated but had seizures within the following four hours. He was unresponsive and placed on mechanical ventilation (MV) until he was 32 days of life. At 45 days old, he required MV once again due to apneic episodes (a temporary absence or cessation of breathing), which resulted in a respiratory infection, and required increasing ventilator settings. At 65 days old, he had his first major bronchial-obstructive reaction, accompanied by crying and generalized cyanosis requiring resuscitation and sedation. These episodes were recurrent and progressively worsened during the course of hospitalization, and in spite of several therapeutic strategies, at 9 months old he required continuous mechanical ventilation and had frequent bronchial obstructive reactions and seizures that destabilized him, resulting in an extensive and severe neurological injury. Medical evidence indicated, with a high degree of certainty, that if Ramon survived, he would be quadriplegic (total loss of use of all four limbs) and have severe cognitive impairment. In this context, physicians, nurses and parents agreed that life support was against Ramón's best interest because such measures (need for a continuous IV line, airway aspiration, sedatives and, sometimes, even paralytic drugs) only caused additional suffering and no benefits for the patient, prolonged suffering and implied an extremely low quality of life, and that providing life support only for the purpose of alleviating the pain of losing a child was against Ramón's own dignity. Therefore, one morning, with Ramón in his mothers' arms and next to his father, he was taken off mechanical ventilation. Sedatives were increased to manage a potential sensation of shortness of breath. Few minutes later Ramón had an apnea episode, which resulted in a cardiac arrest, and died; resuscitation was not attempted.

Case 3. Persistent vegetative state Pedro, a 15-year-old boy, was in a car crash and suffered a brain injury which left him in a vegetative state. He was intubated and on mechanical ventilation for more than 17 months and never regained consciousness nor had any reaction to or interaction with the outside world. His parents asked for the endotracheal tube to be removed and to let him die in peace. Knowing Pedro, they assured that this was what their son would have wanted. Physicians removed the endotracheal tube that was connected to the ventilator and Pedro died approximately 30 minutes later.

Parts identified as "B" and "C" provide ample space for respondents to delve into their concepts and opinions.

The study population included all judges, defenders, and prosecutors from criminal and civil justice and oral trial courts, defenders and advocates of minors and legally incompetent persons from criminal and civil justice, and forensic physicians. Only personnel from the National Judiciary and the Guardianship Office who might intervene in cases of WLS in children were included. Survey respondents signed a written informed consent, and the study was approved by the Ethics Committee and the Institutional Review Board of Hospital de Pediatría "Prof. Dr. Juan P. Garrahan", and the Health Research Committee (Comisión Nacional Salud Investiga) of the National Ministry of Health.

For descriptive statistics purposes, categorical outcome measures were described as proportion and 95% confidence interval (95% CI). The univariate analysis was done using the x² test. No multivariate analysis was done due to the small n size (n = 51). Answers were qualified by two principal investigators separately, and differences were solved by consensus. Data were analyzed using the Stata 9.0 statistical package for Windows (StataCorp, College Station, Texas, USA).

RESULTS

Between April and August 2011, 185 surveys were distributed: 135 among National Judiciary members and 50 among members of the Forensic and Legal Medicine Board. Sixty-eight (36.76%) surveys were returned: 50 from the National Judiciary and 18 from Forensic and Legal Medicine Board. Among these 68 surveys, 17 (25%) members of the National Judiciary did not complete section "C": 7 criminal defense lawyers and 10 judges.

Descriptive data of survey respondents are shown in detail in Table 2.

Table 2. Description of survey respondents (n: 68)

Most respondents (47: 92.15%) were never involved in a WLS case. To 96.15% of respondents (50 out of 52 completed surveys), "killing someone", "helping someone to die" and "allowing someone to die" were not the same.

Among the 50 respondents who answered the section about withholding treatment versus interrupting or withdrawing treatment, 84% (42) considered that these were legally separate entities while 16% (8) considered both situations were legally equivalent.

Analysis of hypothetical case histories

This section of the survey was completed by 48-51 respondents. Seventeen respondents systematically omitted this section because the National Chamber of Civil Appeals forbade judges from the civil courts from participating in the survey by alleging that they might eventually fall under prejudice should they become involved in a future case.

Table 3 is a summary of answers given to each case. Among respondents who completed this section, for case 1, 30% criminalized the measures taken; for case 2, 41%; and for case 3, 39%.

Table 3. Answers from respondents regarding each hypothetical case

Table 4 describes the type of crime attributed to each case.

Table 4. Types of crimes attributed in each case

Pooled analysis of the three case histories

In the pooled analysis of answers regarding the three cases, it was observed that 28 (55%) respondents did not criminalize any of the decisions made. On the contrary, 13 (25%) respondents considered that actions taken in all three cases constituted a crime; 6 (12%) criminalized one of the three cases; and 4 (8%) criminalized two out of the three.

Among the answers provided for the three case histories, 73.81% (n = 110) agreed on the withdrawal of MV. Also, 63.40% (n = 97) focused on the need to have these situations resolved in the health care setting, without the need of requesting legal authorization. In terms of variation in the opinions regarding the existence of advance medical directives (AMD) or when the patient was an adult, most respondents did not modify their answer: 116 (76.8%) and 115 (77.2%) of answers, respectively.

Actions described in the case histories were identified with euthanasia by 47% (n = 24) of respondents. In this regard, case 2 was mostly considered this way (23%, 11 respondents), followed by case 3 (19.6%, 9 respondents). Case 1 was the one with fewer references to euthanasia (8%, 4 respondents).

No differences were observed in opinions in terms of religion, sex or profession (judges, prosecutors, and defenders). A significant association was observed between working in the legal field and a higher likelihood of criminalizing any of the three cases, compared to health care providers, which included physicians, a psychologist and a dentist (Table 5). On the contrary, religion (grouped by Jewish-Christian tradition or agnostic-atheist) was not associated with differences in the criminalization of decisions made (p = 0.9).

Table 5. Determination of crime probability based on original profession

Qualitative results

Handwritten comments and notes made by survey respondents and the subjective findings resulting from personal interviews with respondents are available in the supplementary material (Annex).

DISCUSSION

WLS is a common decision made in pediatric intensive care units (PICUs) across the world^2-13 and in Argentina¹⁴, and, to this date, no court claims have been made in Argentina in relation to WLS.

However, the "fear of litigation"*is a factor that may have a negative impact on decisionmaking processes, communication with the patient's family, and their duly participation in such decisions.

Actually, the fear of litigation may result, on the one side, in therapeutic obstinacy^15-20 and, on the other, in an inadequate WLS.^17,18,21 It may also affect the level of communication^22,23 and inquiry on WLS decisions with the family.

It may be believed that the existence of bioethical, medical and legal grounds and the absence, in Argentina, of court decisions against WLS does not justify such fears. However, this study explores, for the first time in our country, legal workers' opinions in relation to WLS and shows that health care providers' fear of litigation may be justified.

Although, as expected, most respondents agreed with the decisions made in the hypothetical case histories, a remarkable number of them (45%) found one or more crimes in a setting that, as presumed by authors, posed an ethically and legally valid case of WLS, similar to those commonly observed in Argentine PICUs.^14,15,24,25

It is striking that justice workers, regardless of their position (judge, prosecutor, defender, or advocate of minors), had such dissimilar opinions regarding medical practice in its legal significance, both in relation to the "crime-no crime" dilemma and the type of crime (intentional homicide or wrongful death, failure to render assistance, or inciting a person to commit suicide), to the point that, for the same case, both a homicide and the non-existence of a crime were proposed. Or the fact that the same practice may be criminalized as any of the four criminal definitions indistinctly.

It was obvious, during the conduct of the survey and based on respondents' comments, that contact with real cases of severely ill patients who have no reasonable possibilities of recovery or improvement in the setting of tertiary pediatric practice had made these legal workers upset. The distress caused by these situations became evident during interviews. Respondents made an effort to provide, on the one side, a "technical and professional" opinion, but on the other side, they had an understanding, empathetic and compassionate position regarding others' pain. In their effort to achieve a balance, when they believed that the case constituted a crime, from a technical point of view, they also attempted to "overturn" the legal perspective and find a legal framework that would reduce the sentence, exclude illegality or prevent accountability.

It is also worth noting, as a positive finding, that many survey respondents (63.40%) stressed the need for these matters to be resolved in the health care setting and that, if a third party was required to intervene other than -a the treating team or the patient and his/her family, they proposed the participation of an ethics committee and avoiding judicialization of the health care relationship.

We agree with this consideration. It is understandable that judicial involvement should be an exceptional resource, the last resort once all possibilities of agreement with the patient and his/her family regarding the management plan have been exhausted. In this regard, the role of the ethics committee is essential because it allows understanding the health-disease situation from different scientific and lay perspectives. As a matter of principle, and supported on survey findings, the participation of an ethics committee should be requested if discrepancies, questionings, and/or doubts arose regarding the medical decision-making process. Only if discrepancies are against the patient's best interest and an ethics committee is not able to establish consensus, it would be acceptable to make a legal claim.

Another remarkable finding of this study was that most respondents (73.81%) agreed to the withdrawal of MV in the three cases, which has been frequently problematic given that, although not initiating and withdrawing life support have been considered ethically and legally equivalent,^1,26-29 for the health care team it is morally more challenging to interrupt a treatment than to withhold it. Health care providers tend to give a different psychological/emotional significance to withholding treatment versus withdrawing it.³⁰ The latter is usually not easily accepted among health team members, mostly because the proximity of the patient's death following interruption makes them feel like they are "causing" their death, even if that is not their intention.

Given that this is an original study, there are no previous references for comparing results, but it is worth noting its significant limitations. First of all, the low response rate, especially regarding the most important section of the survey: hypothetical case histories. The 27% response rate hinders the possibility of generalizing results. However, 45% of survey respondents believed that one, two or the three cases were related to some form of crime. Even if those who did not complete the survey had indicated that they did not typify any crime in any of the hypothetical cases -a highly unlikely polarization of opinions-12% of respondents would still criminalize decisions made.

Secondly, the survey technique may not have been sufficient to convey such complex medical concepts and situations in an effective manner to non-medical professionals. However, respondents indicated that they were cognitively -although not emotionally- comfortable with case description and, even though this was a self-administered survey, the investigator was available to discuss and clarify any aspect that might have arisen while reading it.

Thirdly, the survey was administered before the modification in the National Patient's Rights

Law, medically referred to as the "Death with Dignity Law" (May 2012), which has definitely helped to modify the general attitude regarding these situations.

However, there are data supporting the prevalence of this issue. For example, the case of Marcelo Diez, an adult patient who has been in a persistent vegetative state for the past 20 years. His family has made a claim for the withdrawal of life support. An expert report by the National Forensic and Legal Medicine Board and three opinions issued by bioethics committees (Committee for the Provincial Board of Management Quality of the Secretariat of Health of Neuquen, Ethics Committee of the Argentine Society of Intensive Care, and Ethics Committee of INCUCAI**) support the family's request. At present, the case has been raised to the Supreme Court because, after having been in the hands of 15 members of the National Judiciary, including different court judges, the Attorney General, etc., and even after the above-mentioned law was passed, WLS has not been authorized. We believe this case is far from being resolved.

The fear of litigation that many health care providers have at the time of making end-of-life decisions regarding their patients' lives may be justified. We believe that new comprehensive clinical practice guidelines, which provide details regarding the decision-making process, as those published in other countries,^31-33 developed by health care providers, legal professionals, and bioethicists will help to improve the quality of care provided to patients, their families and the health team.

CONCLUSION

Forty-five percent of survey respondents considered that decisions made constituted some form of crime, and this opinion was significantly associated with working in the legal field compared to working in the health care setting. In addition, variations in the type of crime considered were also observed.

*We refer to “fear of litigation” as the psychological “driving force” of “defensive medicine”, a MESH and DeCS term defined as “alterations of modes of medical practice, induced by the threat of liability, for the principal purposes of forestalling lawsuits by patients”. (http://pesquisa.bvsalud.org/portal/decs-locator/?lang=es&tree_id=I01.880.604.583.524.300&term=I01.880.604.583.524.300. Accessed on: December 2014).

** Instituto Nacional Central Único Coordinador de Ablación e Implante.

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