End-of-life decisions for surgical neonates: Experience in The Netherlands and United States

doi:10.1016/0022-3468(95)90396-8

Journal of Pediatric Surgery

Volume 30, Issue 10, October 1995, Pages 1420-1424

https://doi.org/10.1016/0022-3468(95)90396-8 Get rights and content

Abstract

Purpose: To characterize end-of-life decisions for surgical neonates and compare similarities and differences in practice between pediatric surgeons in The Netherlands and the United States. Methods: The authors evaluated the deaths of all neonates admitted to the surgical intensive care unit (SICU) of two major children's hospitals: Sophia Children's Hospital (SCH) in The Netherlands and Columbus Children's Hospital (CCH) in the United States. Between January 1990 and July 1993, neonatal SICU admissions totaled 362 (SCH) and 125 (CCH). Neonates who died were classified as follows: group 1 = poor prognosis, expected death, and group 2 = good prognosis, expected survival. Results: The mortality rates were comparable for each SICU: 12% (SCH) and 14% (CCH). The average survival period was shorter in group 1 (1.5 days) than in group 2 (26.5 days). Criteria for assignment to group 1 differed, with “expected poor quality of life” used at SCH, and “futility” at CCH. Criteria for group 2 were similar and included significant postoperative complications. Although the percentages with a do-not-resuscitate (DNR) status were comparable (SCH, 51%; CCH, 55%), the application of the DNR order differed in each SICU. The majority of neonates at SCH had either withholding or withdrawal of life support, whereas no further escalation in treatment was offered for infants with a DNR order at CCH. The average survival period after the DNR order was 4 days at SCH and 7 days at CCH. Conclusion: DNR orders were used for more than half the surgical neonates with critical illness. Criteria for DNR status and implementation of patient care after the DNR order differed between the SICUs.

References (13)

FWJ Hazebroek et al.
Evaluation of mortality in surgical neonates over a 10-year period: Nonpreventable, permissible, and preventable death
J Pediatr Surg
(1991)
FWJ Hazebroek et al.
Withholding and withdrawal of life support from surgical neonates with life threatening anomalies
J Pediatr Surg
(1993)
CA Ryan et al.
No resuscitation and withdrawal of therapy in a neonatal and a pediatric intensive care unit in Canada
J Pediatr
(1993)
TL Beauchamp et al.
Nonmaleficence
NG Smedira et al.
Withholding and withdrawal of life support from the critically ill
N Engl J Med
(1990)
RL Jayes et al.
Do-not-resuscitate orders in intensive care units
JAMA
(1993)

There are more references available in the full text version of this article.

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There is heterogeneity in how “withdrawing” and “withholding” are defined in empiric research. Many authors do not distinguish between withdrawing and withholding,42-45 with one for the specific reason of ET.46 However, in studies that delineate between the two practices, differential rates of mortality are evident.
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The third issue covers several aspects of the ethical decision-making process with regard to forgoing life support in surgical neonates. All these issues have been subject of discussion and clinical research in our pediatric surgical department for many years.1–4 These issues will be discussed on the basis of two clinical case reports.
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Withholding or withdrawal of life sustaining treatment for newborn infants
2012, Early Human Development
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30% of their dying babies underwent such consideration [10]. Since then many authors have described the extent and nature of this practice around the world by retrospective studies [9,11–16]. In a small retrospective study from the UK, the mode of death was due to limiting LST in 58% of babies who died in a Neonatal Unit over a period of 4 years (withdrawal of LST in 40%, withholding of LST in 3% and DNR order in 15%) [9].
In the last two decades the survival of extreme preterm infants and sick newborn infants has improved significantly due to the advances in perinatal medicine. Despite this advance, for some babies, withholding or withdrawal of life sustaining treatment may be the best option in the interest of the baby.
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The neonate with major malformations: Experiences in a University Children's Hospital in The Netherlands
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Advancements in medical technology over the last decades have greatly benefited perioperative care of newborns undergoing major surgical interventions. Yet, a proportion of these babies will not survive, and doctors are forced to face the difficult ethical question of whether, in cases of severe congenital malformations or acquired diseases, the expected quality of life justifies the decision to continue, withhold, or withdraw treatment. In a tripartite approach, the authors present their relevant experiences with these newborns in the pediatric surgical department of the Sophia Children's Hospital (SCH). First the authors evaluated the mortality pattern and causes of death in surgical neonates over 2 periods (1986 through 1990 and 1996 through 2000). The mortality rate was the same, 10%. Pattern of mortality was classified into 3 groups: nonpreventable, permissible, and preventable death. The most striking difference between both mortality groups existed between the percentage of preventable deaths, 14.5% in the earlier period, versus 5% in the most recent period. Half of the preventable deaths in the former period occurred in relation to postoperative, infectious treatment complications, such as inadequate sepsis management. These errors were not seen anymore in our recent evaluation. Second, the authors studied the physical and psychosocial adjustment of former patients, particularly those operated on for digestive tract anomalies. The follow-up period encompasses from 8 to 12 years showing that the physical functioning of these children was relatively good. With respect to their cognitive and psychosocial functioning it seems justified to conclude that they are at risk for lower cognitive functioning, learning problems, and possibly lower educational levels. Third, the authors decided that ethical questions related to surgical treatment of necrotizing enterocolitis (NEC) actually fits within the scope of this article. They hypothesized that a particular minimum birth weight could be a decisive factor for refraining from surgery on ethical grounds in the treatment of this particular disease. A total of 116 patients with NEC were identified over a 5-year study period. Seventy-five fell into the lowest birth weight group (< 1,500 g). The operative mortality rate (21 patients) increased with decreasing birth weight: group A, 29% (A1, 31%; A2,26%); group B, 23%; and group C, 0%. The authors were particularly interested in the long-term follow-up of the A1 group (BW < 1,000 g), and 18 of the 30 survivors of this group were available for follow-up. There were 2 survivors with short bowel syndrome. Early assessment and neurodevelopmental outcome, at least 2 years after surgery, showed that in 14 of these 18 (78%) there were no major handicaps. The other 4 patients had one or more major handicaps (cerebral palsy, mental and/or visual handicap, and hearing loss). NEC-related mortality after surgery is highest for patients with birth weight less than 1,000 g (31%). However, in view of the overall good 2-year follow-up results of the survivors, we feel unable to define a minimum birth weight that, as such, could serve as a cutoff point for deciding to forbear, on ethical grounds, surgical treatment for NEC. The picture represented by our tripartite investigation of life and death in and after the intensive care unit period serves as a mirror and truthfully reflects ethical questions of our medical practices.
Analysis of clinical bioethics teaching in pediatric surgery residency
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Background/Purpose: Although clinical bioethics teaching (CBT) is not a required component of the essential curriculum for pediatric surgery residency, ethical considerations often accompany surgical decision making for infants and children. This study was designed to quantitate CBT during pediatric surgery residency (PSR) and to determine preferences about formal bioethics instruction.
Methods: An 80-item questionnaire was mailed to 140 graduates of accredited PSR in the United States and Canada. Questions included demographic data, experience in CBT during and after PSR, preferred topics and teaching methods, and self-assessed and objective competency in bioethics.
Results: The response rate was 78% (n = 109); 72% completed PSR between 1990 and 1995 (mean, 1991). Formal CBT within the curriculum of PSR was reported by 9% of respondents; lecture and consultation with an ethicist were the most frequent teaching methods. Informal CBT was noted by 88% of pediatric surgeons; observation of patient cases with ethical dilemmas was the primary mode of instruction. Quality of life, withholding/withdrawal of care, informed consent, child abuse, and economics ranked highest for most important CBT topics, while euthanasia, clinical research trials, and cultural diversity were given low priority. The preferred teaching methods were case-based discussions and consultation with an ethicist. Although 97% favored additional CBT in all postgraduate training, respondents who completed advanced study in medical ethics (P < .05), were women (P < .05), or were members of a hospital ethics committee (P < .05) were more likely to advocate a standardized bioethics curriculum during PSR. A majority (86%) expressed competency in handling ethical problems in clinical practice, however, 47% gave incorrect responses or were unsure about routine bioethics questions.
Conclusions: Formal instruction in clinical bioethics is not included in the curriculum of most residencies in pediatric surgery. Recent graduates of PSR favor case-based and practice-oriented teaching in clinical bioethics.

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^☆: Presented at the 41st Annual Congress of the British Association of Paediatric Surgeons, June 28–July 1, 1994, Rotterdam, The Netherlands.

^☆☆: Supported in part by the Armand Hammer Traveling Surgical Scholarship, American College of Surgeons, 1991–1992.

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End-of-life decisions for surgical neonates: Experience in The Netherlands and United States☆,☆☆

Abstract

J Pediatr Surg

J Pediatr Surg

J Pediatr

Nonmaleficence

Withholding and withdrawal of life support from the critically ill

N Engl J Med

Do-not-resuscitate orders in intensive care units

JAMA