End-of-life decisions are usually required when a neonate is at high risk of disability or death, and such decisions involve many legal and ethical challenges. This article reviewed the processes of ethical decision-making for severely ill or terminal neonates, considering controversial issues including the followings: (
Over the last twenty years, perinatal technology advances, have raised survival rate of the fragile and premature neonates. However, intensive care remains ineffective for a small number of such neonates that prolongs the death process and results in upsetting them and their families. Despite many advances in diagnosis and treatment of congenital diseases, perinatal death is still widespread in European countries. Most of such deaths occurred in obstetric wards or Neonatal Intensive Care Units (NICUs) and often preceded by end-of-life decisions such as withholding or withdrawing life-sustaining treatments (
All original and review articles on PubMed, Google Scholar, Web of Science and Scopus databases were searched using the following keywords: ethics, neonatal intensive care, end-of-life decision, guideline and laws. After excluding duplicate articles, the titles of the remaining articles were reviewed and the irrelevant were removed. Then, the abstracts of the remaining articles were studied, and the reference lists were also assessed.
This review presents differences in end-of-life care and neonatal decision-making approach in several European countries such as Switzerland, Germany, Italy, United Kingdom, France, the Netherlands, Sweden, and Spain. This article reviews neonatologists ' perspectives on decisions that limit intensive, futile, or disproportionate interventions imposing burden on patients and their parents. Most neonatologists in these countries stated that limiting intensive care to “let nature take its course” can be ethically justifiable in terminal and fatal disease conditions (
Proportion of making decision (alone or with others) to set limit to intensive interventions among physicians (*1996-1997 and 2016 charts were extracted from (17) and (19), respectively)
Proportions of physicians reporting to have ever decided (alone or with others) to set limits to intensive interventions ** this table is from (16-19)
Decisions | Percentage of physicians (95% cl) | Percentage of | ||||||||
---|---|---|---|---|---|---|---|---|---|---|
United | France | Spain | Italy | Netherland | Sweden | Germany | Germany | Austria (N=8) | Swiss (N=17) | |
| 86 | 83 | 85 | 81 | 89 | 95 | 95 | 97 | 100 | 100 |
| 91 | 67 | 74 | 57 | 95 | 82 | 81 | 99 | 100 | 100 |
| 97 | 59 | 50 | 29 | 99 | 94 | 74 | 97 | 100 | 100 |
| 91 | 66 | 66 | 44 | 96 | 68 | 95 | 99 | 100 | 94 |
| 92 | 82 | 63 | 53 | 95 | 88 | 82 | 96 | 88 | 100 |
| 93 | 96 | 87 | 64 | 98 | 95 | 86 | 97 | 88 | 100 |
| 15 | 73 | 6 | 5 | 71 | 3 | 8 | 3 | 0 | 6 |
In a 2016 multi-center, online, anonymous study in NICUs in Switzerland, Germany, and Austria, 198 eligible neonatologists received questionnaires (
In Germany, in 2016 (94%) compared to 1996 (69%), the number of physicians who have made the following decisions at least once in their professional life was remarkably high: limit intensive care, withhold resuscitation at birth or emergency interventions, as well as withdraw life-supporting medicines or mechanical ventilation (
In all countries except Sweden and France, physicians believed that parents should be involved in ethical decisions (
If parents participate in decision-making, conflicts between the physicians and parents could arise about making the most appropriate decision for the infant. However, such conflicts scarcely occur and often can be resolved. According to most physicians, parents’ opinions and opinions of parents should be agreed upon when they want to continue severe interventions. A physician said, “We need to consider parents’ viewpoints to withhold intensive care when we are those who have asked about it”. However, parents’ opinions do not receive similar consideration when they reject severe care (
In Nuffield Council document, no survival chance was considered for neonates prior to 22 weeks of gestational age; however, at 22 and 23 weeks, they have extremely low weight such that resuscitation and critical care must be experimental and cautioned. At weeks 24–25, critical care must be supplied, except when both doctors and parents accept that considering baby’s general health, no hope for survival due to the baby’s general health condition and probably high suffering level. After 25 weeks, intensive care is considered standard treatment approach (
The revised Swedish society of medicine’s guideline, on discontinuing life-sustaining therapy, in March 2007, supported the competent individual’s decision right as well as patient's right to make informed decisions about avoiding treatments such as mechanical ventilation, tube feeding, fluid resuscitation, and medications. However, proper sedative interventions should be prescribed. Sedation at the time of stopping life-sustaining interventions raised challenges as it was regarded physician-assisted suicide (
The National Ethics Committee in France published a document for involving parents in decision-making. Leonetti’s law on patient rights at the end of life in 2005 and Kouchner's law on patient rights in 2002 addressed overtreatment at birth and neonatal active euthanasia (
Recent laws enhanced patients’ autonomy to get informed decisions and provide consent to clinical measures. Although parents or guardians make decisions for minors, in emergency and two other situations, medical authorities make decisions: (
In Italy, in 2007 and 2008, resuscitation guidelines were provided for neonates at extremely low gestational age to determine where resuscitation and intensive care should be mandatory and when might such care could be useless or excessively challenging, contrary to patient expediency. These guidelines emphasize treatment in the early stages of pregnancy or regardless of gestational age, and parents should be notified; however, in case of disagreement, medical decision should be followed. Such guidelines support treatment in the delivery room to provide each neonate the best survival chance, but in the event of treatment ineffectiveness, to consider compassionate care (
In the Netherlands, active euthanasia was legalized in 2002 for eligible adults and children over 12. Despite general illegality of neonatal euthanasia, the Groningen Protocol authorizes it in cases of “hopeless and unbearable suffering” under the following conditions: (
The ethicists and physicians’ reactions to the Groningen protocol were negative because they question measure of "hopeless and unbearable suffering" in presence of appropriate pain control and relief medications as well as using involuntary euthanasia instead of palliative care (
The 2016 study explains neonatologists’ practices and perspectives about non-treatment decisions and involvement of parents in taking care of neonates at higher death risk or severe illness (
In a study conducted on neonatologists and nurses, most subjects (60%) agreed upon both neonatal end-of-life and parental decisions, although such high acceptance of end-of-life decisions did not fit within the framework of the law in several countries (
Discussing non-treatment decisions in the public pediatric community has increased the inclination of neonatologists to limit treatments if it is in patient's best interest (
In Swiss, German, and Austrian national guidelines, withholding and withdrawing life-sustaining medical treatment in neonates, if not in their best interest, are considered ethically and medically appropriate (
Neurologists are now more likely to include parents in deciding whether to start, continue, or leave intensive care. Moreover, caring with the support of family including parents or guardians is mandatory in Germany, Switzerland and Austria (
In 2016, almost all neonatologists would pursue the parents’ desire to resuscitate the preterm neonate with gestational viability limits. However, if parents do not request resuscitation of the premature neonate, less than 20 percent of neonatologists stated that they would resuscitate the neonate despite the national guidelines and parents’ decisions; and hence, in practice, personal beliefs and attitudes could be prioritized over national policies and default options in decision-making about severely preterm neonate with viability limits (
European countries’ legal and ethical background is not coherent. Modifications introduced in several countries have followed directions determined by the neonatologists’ attitudes and beliefs documented by the available data. Informing parents or guardians when decisions are made about children is required in almost all countries. While most countries request third-party counseling or intervention in the event of ongoing disputes between medical staff and parents, physicians often make the final decisions.
According to the data of the 1996 and 2016 surveys, withdrawing and withholding intensive care in the NICU as well as involving parents in decision makings have become more accepted, which could be as a result of administration of medical guidelines over the past two decades regarding joint decision-makings and care options for neonates at high risk of severe disability or death.
Nevertheless, for some physicians, personal attitudes take precedence over parental decisions and national policies in resuscitating premature neonates with limited viability.
Guidelines and laws are not the only factors influencing behaviors and opinions, and viewpoints of physicians as well as society may change before reflected in legislations. Future surveys need to explore such hypotheses.
Soltani Gerdfaramarzi M, Bazmi S. Neonatal end-of-life decisions and ethical perspectives. J Med Ethics Hist Med. 2020; 13: 1
The authors have declared that no competing interest exists.