Published online July 2, 2007
PEDIATRICS Vol. 120 No. 1 July 2007, pp. e20-e28 (doi:10.1542/10.1542/peds.2006-2555)
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ARTICLE

Physician Medical Decision-making at the End of Life in Newborns: Insight Into Implementation at 2 Dutch Centers

A. A. Eduard Verhagen, MD, JDa, Mark A. H. van der Hoeven, MD, PhDb, R. Corine van Meerveld, MDa and Pieter J. J. Sauer, MD, PhDa

a Department of Pediatrics, University Medical Center Groningen, Groningen, Netherlands
b Division of Neonatology, University of Maastricht, Maastricht, Netherlands


   ABSTRACT
TOP
 ABSTRACT
METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
OBJECTIVE. Decisions regarding end-of-life care in critically ill newborns in the Netherlands have received considerable criticism from the media and from the public. This might be because of a lack of proper information and knowledge. Our purpose was to provide detailed information about how and when the implementation of end-of-life decisions, which are based on quality-of-life considerations, takes place.

METHODS. We reviewed the charts of all infants who died within the first 2 months of life at 2 university hospitals in the Netherlands from January to July 2005 and extracted all relevant information about the end-of-life decisions. We interviewed the responsible neonatologists about the end-of-life decisions and the underlying quality-of-life considerations and about the process of implementation.

RESULTS. Of a total of 30 deaths, 28 were attributable to withholding or withdrawing life-sustaining treatment. In 18 of 28 cases, the infant had no chance to survive; in 10 cases, the final decision was based on the poor prognosis of the infant. In 6 patients, 2 successive different end-of-life decisions were made. The arguments that most frequently were used to conclude that quality of life was deemed poor were predicted suffering and predicted inability of verbal and nonverbal communication. Implementation consisted of discontinuation of ventilatory support and alleviation of pain and symptoms. Neuromuscular blockers were added shortly before death in 5 cases to prevent gasping, mostly on parental request.

CONCLUSIONS. The majority of deaths were attributable to withholding or withdrawing treatment. In most cases, the newborn had no chance to survive and prolonging of treatment could not be justified. In the remaining cases, withholding or withdrawing treatment was based on quality-of-life considerations, mostly the predicted suffering and predicted inability of verbal and nonverbal communication. Potentially life-shortening medication played a minor role as a cause of death.

Key Words: bioethics • withholding/withdrawing treatment • NICU • palliative care

Abbreviations: EoL—end-of-life • NCTS—no chance to survive • PP—very poor prognosis • NMB—neuromuscular blocker

In the past 2 years, the foreign press (especially in Italy, the United Kingdom, and the United States) has paid extensive attention to a supposedly outrageous practice in the Netherlands of physicians' terminating the life of severely defective newborn infants.1–7 It was suggested that all end-of-life (EoL) decisions in the Netherlands were in fact acts of euthanasia based on quality-of-life considerations, with reference to the medical practice in Germany during the Second World War. These accounts were based on the (mis)interpretation of publications regarding EoL decisions and the use of potentially life-shortening drugs in newborns in the Netherlands.8–13

Decisions on when to start, withhold, or withdraw treatment in very sick newborns are among the most difficult decisions in pediatric practice. The difficulty lies to a large extent in the dilemma that is presented by 2 views: the value of life and the quality of life. The advances in technology and pharmacology have created new possibilities to save and prolong the life of newborns, but extension of life can also result in endless and severe suffering, which might not be in the interest of the infant. Studies from the United States and Europe have reported that the proportion of sick newborns in whom the decisions to withhold or withdraw life support preceded death increased substantially during the past 10 years.14–16 Quality-of-life concerns have been reported by neonatologists as reasons for these decision in a substantial proportion (20%–50%) of deaths.8,9,14,17–20 Despite the frequency of these decisions, not much is known about what these quality-of-life concerns really are or about how the implementation of the decision takes place in practice. With respect to the latter, the role of potentially life-shortening drugs that alleviate pain and other symptoms at the end of life of newborns is of special interest. The legal difference between letting die and active ending of life is in principle based on the administration of these drugs.

The quality of EoL decisions, including the decisions regarding palliation of pain and symptoms, can be evaluated and compared between various countries only when sufficient insight is provided about medical practice at the end of life. With the purpose to gain more insight into what the medical practice in the Netherlands actually is, we conducted a retrospective descriptive study in 2 large university-based tertiary NICUs to determine the reasons that motivate physicians to make EoL decisions and how those are implemented in practice.


   METHODS
TOP
 ABSTRACT
 METHODS
RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
Demographics
We reviewed the charts of all newborn infants who died in 2 university hospitals (A and B) with tertiary NICUs within the first 2 months of life between January and July 2005. We abstracted information from the attending physicians' and nurses' notes to determine demographics: birth weight, gestational age, day of death and diagnoses (using both clinical data and autopsy materials when available), and details about the decision-making process. According to Dutch law, no approval for this study from the ethical committee is required because it is a retrospective study using anonymous data.

The total number of NICUs in the Netherlands is limited to 10 by law to promote efficient use of expertise, manpower, and resources. All deliveries before 32 weeks' gestation take place in a hospital with a NICU. Older newborn infants who require intensive care treatment are referred to these NICUs. Extracorporeal membrane oxygenation is not available in the study hospitals, and heart surgery is not available in NICU B. Patients who require these facilities are transferred to another NICU. In both NICUs, all medical decisions are made by a multidisciplinary team that is led by the attending neonatologist, who is ultimately responsible. The attending neonatologist also informs the parents of their infant's status and proposed treatment plans during regular discussions with the parents. Discussions regarding limiting treatment options are initiated by both the parents and the physicians. Consensus among all team members and the parents in EoL decisions is always sought. During the study period, 423 patients were admitted (280 in NICU A and 143 in NICU B), and the average daily census of critically ill patients was 19 in NICU A and 13 in NICU B.

Classification of Newborns
The attending neonatologist's daily notes and death summaries were used to determine whether death had occurred with or without a preceding medical EoL decision. Medical EoL decisions were defined as medical decisions with the effect or the probable effect that death was hastened. These decisions include the decisions to withhold or withdraw life-prolonging treatment and the decision to end deliberately the life of a newborn. On the basis of the notes, we categorized the newborns at the time of each EoL decision into 1 of the following groups from the literature10,21: group 1, no chance to survive (NCTS); group 2, theoretical chance to survive, very poor prognosis (PP); or group 3, stable, hopeless prognoses with severe suffering, not depending on intensive care. During the study period, in neither center was a patient found to belong in group 3.

Decision-making and Implementation
Physicians' notes were also reviewed to determine the physician's reasons to withhold or withdraw life-prolonging treatment in all deaths. We also ascertained which individuals were involved in the decision-making process. The treatment orders that were given by the physician on the basis of the EoL decision were collected from the files to describe the practice of implementation of these decisions. We used the medical charts and pharmacy notes to identify potentially life-shortening medication, comparing medication before and after the EoL decision. Medication before the decision was defined as the highest dosage of medication with potentially life-shortening effect as administered in the 12 hours before the EoL decision.

We interviewed all neonatologists who were involved in each EoL decision with quality-of-life arguments face to face. We cross-checked all data that were extracted from the medical charts and asked them to explain in detail why they took the decision to withhold or withdraw treatment and how the decision was implemented. In cases in which potentially life-shortening drugs were used, we asked for the purpose. The reasons to limit treatment were grouped into categories that were derived from publications in the Dutch medicolegal literature.22,23

Definitions
Withholding treatment was defined as withholding potentially life-saving treatment, which included not only withholding cardiopulmonary resuscitation but also not providing additional intensive care treatment (eg, not making additional ventilator changes despite hypoxemia, not providing additional catecholamines despite hypotension) in accordance with definitions in the 1992 report by the Dutch Pediatric Association.22 Withdrawing treatment was taken to be equivalent to withdrawing life-sustaining treatment (eg, withdrawing the ventilator). Deliberate ending of life was defined as administering lethal drugs with the purpose to end the life or shorten the life of a newborn who is otherwise stable. We do not use the term "euthanasia" because in the Netherlands, this can be used only when a physician ends the life of a patient on the patient's explicit request, in accordance with the Dutch euthanasia law. In this legal framework, life shortening as an inevitable adverse effect of appropriate pain and/or symptom alleviation is considered acceptable clinical practice. The legal and moral status of administering lethal drugs with the purpose to shorten life in an unstable newborn in the dying phase, as part of careful EoL management, is still uncertain and subject to ongoing debate.


   RESULTS
TOP
 ABSTRACT
 METHODS
 RESULTS
DISCUSSION
 CONCLUSIONS
 REFERENCES
 
Demographics
A total of 30 newborns died within the first 2 months of life in the 2 hospitals during the 6-month study period: 21 died in hospital A, and 9 died in hospital B. Twenty-nine infants died in a NICU, and 1 patient died on a PICU. Table 1 shows the main characteristics of all deaths and the categories in which all newborns were classified. Overall, 24 (83%) deaths were attributable to withdrawal of treatment, 4 (10%) were by withholding treatment, and 2 (7%) occurred despite maximum treatment. The diagnoses that led to death varied, the largest group being term newborns with hypoxic-ischemic encephalopathy (23%).


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  		TABLE 1 Patient Characteristics and EoL Decision Characteristics of All Deaths in 2 NICUs From January to July 2005

 
Classification of Newborns
The data from the medical charts were sufficient to classify all patients in categories. Of all 28 deaths that were preceded by an EoL decision, 18 (64%) were classified as NCTS and 10 (36%) as PP at the time of the final decision. The proportion of deaths in the PP category was the same in both hospitals: 6 (35%) of 17 in hospital A and 4 (36%) of 11 in hospital B. In 9 (32%) of cases, 2 EoL decisions were made, with a median of 24 hours (range: 6–210 hours) between the first and the second decision. Six of these patients were initially classified as PP and moved to NCTS at the time of the second EoL decision. The proportion of deaths that were preceded by an EoL decision and classified as PP was the same in both hospitals: 6 (35%) of 17 in hospital A and 4 (36%) of 11 in hospital B.

Decision-making and Implementation
In all deaths in the NCTS group, it was apparent from the physicians' notes that treatment was withdrawn because there was no chance of survival. Both the parents and the medical team consented to the decision in all documented cases (Table 2). The median time between the final decision and implementation of the decision was 2 hours (range: 0–24 hours). In 1 case, the time course was undocumented. The implementation consisted of discontinuation of artificial ventilation and removal of the endotracheal tube in all cases except 1. In 1 case, the patient was gradually weaned from the ventilator in 24 hours on parental request. Intravenous medication and fluids were continued until death in all cases. The median time between implementation and death was 30 minutes (range: 1–105 minutes).


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  		TABLE 2 Decision-making and Implementation in 30 Deaths

 
In all cases of PP, treatment was withheld or withdrawn because the prognosis was considered very poor. The considerations that led to this conclusion were documented in the medical charts but without much detail (eg, treatment stopped because quality of life is deemed low). Table 3 shows more detailed information from the interviews indicating that in all cases, >1 consideration was present. The predicted very low quality of life was most frequently based on the predicted suffering and predicted inability to communicate. With inability to communicate, the neonatologists meant inability to be engaged in any kind of communication with other people, verbally or nonverbally (eg, because of deafness and blindness combined with predicted severe mental retardation or predicted vegetative state).


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  		TABLE 3 Considerations to Decide to Withhold or Withdraw Treatment Because of a PP in All Newborns in Group 2 (n = 16)

 
The median time between the decision and implementation of the decision in cases of PP was 1 hour (range: 0–24 hours). The implementation consisted of discontinuation of artificial ventilation and extubation in all cases except 1. In 1 case, the ventilatory support was weaned stepwise in 24 hours on the parents' request. The median time between implementation and death in this group was 60 minutes (range: 15–360 minutes).

Each of the documented decisions was preceded by at least 1 or more decision-making meetings of the medical team followed by 1 or more with the parents. In these meetings, provision of sedation and analgesia as potentially life-shortening medication was also discussed. Table 4 presents the use and dosing of this medication before and after the final EoL decision. Before the final EoL decision was made, the majority of cases in NCTS (n = 15; 83%) and in PP (n = 9; 90%) received opioids and benzodiazepines. In all cases, the dosage was within the normal dosing range. Two newborns with pulmonary hypertension were treated with neuromuscular blockers (NMBs) as part of the hospital's standard treatment of this disease. Additional medication after the final EoL decision was administered in 7 (39%) cases in NCTS and 8 (80%) cases in PP. It was given as an increased dosage of the existing continuous medication or as a bolus infusion. The dosages remained within normal dosing range. The reasons to provide additional medication were treatment of presenting symptoms (eg, pain, dyspnea, discomfort) and prevention of suffering from these symptoms in the process of dying. None of the physicians interviewed considered hastening death as the aim of additional medication, but all declared that they would consider it an acceptable adverse effect. NMBs were added in 5 newborns in PP. Four of them had a diagnosis of hypoxic-ischemic encephalopathy, 1 with sepsis/meningitis. In 4 of 5 cases, NMBs were prescribed to prevent gasping. In 3 of these cases, this was done on explicit parental request, and in 1 case, it was the physician's decision to do so because it was expected that gasping would scare the parents away from their dying child. In the remaining case, the dosage of previously prescribed NMB was increased to ensure optimal effect, whereas discontinuation was expected to impose unnecessary suffering. All cases were classified as deaths from natural cause by the attending neonatologists.


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  		TABLE 4 Use of Potentially Life-shortening Medication, Before and After the Last EoL Decision, in NCTS and PP Groups

 

   DISCUSSION
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
CONCLUSIONS
 REFERENCES
 
The attitude of neonatologists in the Netherlands regarding EoL issues has been reported extensively in several publications.8–11,24–26 This study is the first to report in detail to which practices this attitude really leads. We acknowledge several limitations of this study. First, our data may not be representative of the medical practice regarding sick newborns nationwide, because we evaluated data from 2 of 10 hospitals with NICUs. However, these 10 NICUs have regular meetings, and they use the same practice guidelines including those regarding EoL decision-making. Second, no information is provided on other potentially important factors in the decision-making, such as the parents' experience and their perception of the management of symptoms around the time of death. Third, our retrospective analysis of decision-making may have been influenced by inaccuracy in recall of arguments by the neonatologists who were interviewed.

We found that 28 (93%) of a total of 30 deaths were attributable to the decision to withhold or withdraw life-sustaining treatment. Withdrawal of life-sustaining treatment was much more common than withholding treatment (86% vs 14%). The proportion of deaths that resulted from withholding or withdrawal of treatment in our study is substantially higher than that described in the early articles on neonatal EoL care (14%–30%).27,28 Most more recent reports from centers in the United States, the United Kingdom, Australia, and Europe have reported rates between 58% and 75%.15–18,29 Only 2 studies have described similar proportions as our study. Barton and Hodgman30 reported that 124 (86%) of 146 deaths had treatment withheld or withdrawn in their unit between 1998 and 2002. Arlettaz et al19 reported that in 93% of 199 deaths, treatment was withheld or withdrawn. The relatively high proportion in our study is likely to reflect the prevailing approach of the Dutch neonatologists that in sick newborns, it is not only the life-ending decision but also the life-prolonging decision that must be justified.10,22 In their opinion, if treatment is medically futile, then it should be stopped to prevent unnecessary suffering of the infant. Considering that this is a nationwide approach, it can be assumed that the high proportion reported by us is representative of the whole country. It may also reflect the philosophy of Dutch physicians that when a newborn is clearly dying or going to die despite treatment, all efforts must be made to let the child die in the arms of the parents, disconnected from the ventilator. In our study, the decision to withhold treatment under these circumstances was taken as an EoL decision, whereas in other studies, these cases were classified as deaths despite maximal support16 or classification remained unclear.15,30 This observation illustrates that comparison of the contribution of withholding or withdrawing treatment between studies is difficult because definitions vary between studies. Singh et al14 took withholding treatment to be equivalent to withholding cardiopulmonary resuscitation and withdrawing as withdrawing of mechanical ventilation. A much broader definition, as used by Wall and Partridge18 and by us, is likely to result in a higher rate of deaths after withholding or withdrawing of treatment.

Decisions that were based on quality-of-life arguments (PP) preceded death in 16 (57%) of 28 deaths in our study. Comparison of this finding with other studies is hampered by the fact that all other studies focused on the final decision that led to death. We included all EoL decisions that preceded death in our analysis and observed that in a substantial number of cases (9 [32%] of 28), >1 type of EoL decision was made. Our results show that in most cases, the first decision was the decision to withhold treatment because of the patient's PP. Several hours to days later, it was determined that the patient had NCTS and the second decision to stop treatment was made. The newborn had shifted from PP to NCTS. One explanation for this shift could be that the first decision to withhold treatment was made to gain time without imposing additional burden, hoping that the restricted treatment would still lead to improvement. Instead of improving, the clinical situation of the child worsened over time, as a result of the underlying disease, resulting in absence of a chance of survival. Another explanation could be that the decision to withhold treatment was initially more acceptable for the parents. A third possibility could be that by withholding life-saving treatment, the physician created a situation in which survival was simply not possible. By evoking this situation, the physician prevented the more difficult discussion about quality of life. We think that our observation suggests that classification of EoL decisions in newborns can not be based on the final decision only. Evaluation and comparison of the decision-making process in NICUs and, specifically, the quality-of-life arguments at the end of life in newborns must include all previous decisions because of the possible causality between these decisions.

The neonatologists in our study used general and specific quality-of-life considerations to justify why the predicted quality of life was deemed very low. The general considerations relate to the moral principle of proportionality of treatment, suggesting that the "costs" in terms of additional burden for the patient versus the foreseeable "effects" in terms of improvement of the patient's medical condition must be balanced. The most frequently used specific considerations were predicted suffering and the predicted inability to be engaged in any kind of verbal and nonverbal communication. These considerations seem to legitimize limitation of treatment for neonatologists in the Netherlands. Only a few authors have reported similar details regarding quality-of-life arguments. Wall and Partridge18 reported the prognosis for severe disabilities and the infant's predicted suffering as the main quality-of-life concerns. Sing et al14 described that treatment was limited if the burden of continuing interventions outweighed the benefits of prolonging life. Recently, Hentschel et al31 reported PP; severe disabilities; and long-term, far-reaching therapy as considerations.

The infants in this study died relatively fast after the last decision to withhold or withdraw life-saving treatment. Death occurred after a median time of 30 and 60 minutes in NCTS and PP groups, respectively. We were interested in the role of medication with potential life-shortening effect around the time of death. We found that provision of sedation and analgesia was discussed at each decision-making meeting. The medication was administered before and after most EoL decisions to treat symptoms around the time of death (pain, dyspnea, and discomfort). Dosages have consistently remained within normal dosage levels in all cases. This finding suggests a limited role of the potentially life-shortening medication as the cause of death, although lethal adverse effects of the medication cannot be ruled out completely. Earlier studies about the use of potentially life-shortening drugs in the Netherlands focused on the intentions of the physician to differentiate between active ending of life and letting die.8,9,32 The problem with intentions is that they are very subjective, ambiguous, and sometimes unclear even to the physician himself or herself.33,34 We have tried to find the medical reasons for the decision to administer medication. Neonatologists in our study consistently pointed out that the purpose was alleviation of symptoms in all cases. At the same time, they confirmed in the interviews that hastening death as a possible adverse effect of adequate palliative care would be acceptable. This is in line with other reports from neonatologists.12,35,36 The underlying "double effect" principle, suggesting that an action that causes a serious harm (death) can be permissible as an adverse effect of promoting some good end (relief of pain and suffering), is accepted in common medical practice of critical care and EoL care.34

Pain and symptom management at the end of life is known to be of great concern to parents.37 A remarkable finding in this respect was that NMBs were administered shortly before death in 5 patients in the PP group. In 4 of these cases, the purpose was to prevent gasping of the infant. In 3 of 4 cases, administration took place on explicit request of the parents. In the discussions with the medical team, the parents made it clear that they would not accept suffering and agony. The role of NMBs in symptom management at the end of life is controversial. Several studies have reported a practice in the use of these agents at the end of life in children.12,38–40 Most commentary on this issue has concluded that the initiation of these agents as the ventilator is being withdrawn is morally indefensible.40–42 Some have argued that the desire to comfort the patient's family is an important consideration and that initiating neuromuscular blockade can be acceptable when the patient's death after the withdrawal of mechanical ventilation is certain.43–45 However, others believe that the patient's well-being is always more important than family interests. They argue that neuromuscular blockade potentially masks symptoms of pain and suffering and makes proper assessment and adequate treatment impossible.46 Our study is the second to report that parents sometimes explicitly request the use of lethal drugs for their child.47 We think that a request from parents shortly before a certain death is completely understandable because the sight of a gasping child is a potent source of stress and discomfort to all people who witness the dying newborn. Neonatologists in our study were prepared to grant the parental request. This suggests that they accepted the parents' distress as their responsibility. It is uncertain whether the use of medication with a certain lethal effect can be legitimized by referring to this responsibility. We are convinced that robust palliative care is indicated in all EoL situations, providing parental education and support about the EoL physical signs in the dying child, supportive staff, anticipatory grief work, and bereavement service follow-up. If the parental request to administer NMBs to the dying newborn consistently persists despite all of theses measures, then we think that the requests should be granted in the presence of skilled and experienced clinicians.

The results of this study also confirm that deliberate ending of life in newborns remains a rare event, also in the Netherlands, where it is considered to be legally acceptable.48–50 In 6 months, no cases were registered in the study hospitals.


   CONCLUSIONS
TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
REFERENCES
 
We report that the vast majority of deaths in 2 Dutch units were attributable to withholding or withdrawing of treatment. In most cases, the newborns had NCTS and prolonging of treatment could not be justified. In the remaining cases, the decision was based on a combination of quality-of-life considerations, mostly the predicted suffering and predicted inability of verbal and nonverbal communication. Potentially life-shortening medication played a minor role as a cause of death in the implementation. No case of deliberately ending the life of a newborn occurred.


   FOOTNOTES
 
Accepted Dec 12, 2006.

Address correspondence to A. A. Eduard Verhagen, MD, JD, Department of Pediatrics, University Medical Center Groningen, PO Box 30.001, 9700 RB, Groningen, Netherlands. E-mail: e.verhagen{at}bkk.umcg.nl

The authors have indicated they have no financial relationships relevant to this article to disclose.


   REFERENCES
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 METHODS
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 DISCUSSION
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 REFERENCES
 

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PEDIATRICS (ISSN 1098-4275). ©2007 by the American Academy of Pediatrics

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