WITHHOLDING RESUSCITATION

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2005 American Heart Association (AHA) Guidelines for Cardiopulmonary Resuscitation (CPR) and Emergency Cardiovascular Care (ECC) of Pediatric and Neonatal Patients: Neonatal Resuscitation Guidelines

American Heart Association, American Academy of Pediatrics 此原

此原 此原

此原文文文文刊於刊於刊於刊於Pediatrics 2006;117;e1029-e1038

WITHHOLDING RESUSCITATION

It is possible to identify conditions associated with high mortality and poor outcome in which withholding resuscitative efforts may be considered reasonable, particularly when there has been the opportunity for parental agreement (LOE 5).2,105

A consistent and coordinated approach to individual cases by the obstetric and neonatal teams and the parents is an important goal. Noninitiation of resuscitation and discontinuation of life-sustaining treatment during or after resuscitation are ethically equivalent, and clinicians should not hesitate to withdraw support when functional survival is highly unlikely. The following guidelines must be interpreted according to current regional outcomes:

(1). When gestation, birth weight, or congenital anomalies are associated with almost certain early death and when unacceptably high morbidity is likely among the rare survivors, resuscitation is not indicated (Class IIa).Examples may include extreme prematurity (gestational age <23 weeks or birth weight <400g), anencephaly, and chromosomal abnormalities incompatible with life, such as trisomy 13.

(2). In conditions associated with a high rate of survival and acceptable morbidity, resuscitation is nearly always indicated (Class IIa). This will generally include infants with gestational age ≥25 weeks (unless there is evidence of fetal compromise such as

intrauterine infection or hypoxia-ischemia) and those with most congenital malformations.

(3). In conditions associated with uncertain prognosis in which survival is borderline, the morbidity rate is relatively high, and the anticipated burden to the child is high, parental desires concerning initiation of resuscitation should be supported (Class Indeterminate).

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《生命倫理學指引生命倫理學指引生命倫理學指引生命倫理學指引》》》 》

Critical care decisions in fetal and neonatal medicine: ethical issues

C H A P T E R 9 C O N C L U S I O N S A N D R E C O M M E N D A T I O N S

Proposed guidelines for deciding to institute intensive care

9.16 The guidance for deciding to institute resuscitation and full intensive care should include:

(a) An experienced paediatrician should be present at the delivery and make a confirmatory assessment of the gestational age and condition of the baby.

(b) At 25 weeks of gestation and above, the relatively high rate of survival and the relatively low risk of severe disability are such that intensive care should be initiated and a baby admitted to a neonatal intensive care unit, unless he or she is known to be affected by some severe abnormality incompatible with any significant period of survival.

Below 25 weeks of gestation, where the delivery of an extremely premature baby is anticipated and circumstances permit, the clinical team should discuss with the parents in a thorough and frank fashion, the national and local statistical evidence for survival and the range of disabilities which are indicated for this age group. In the consultation with the parents, the healthcare team should make it clear that statistics indicate that most babies born below 25 weeks of gestation will die.

(c) Between 24 weeks, 0 days and 24 weeks, six days of gestation, normal practice should be that a baby will be offered full invasive intensive care and support from birth and admitted to a neonatal intensive care unit, unless the parents and the

clinicians are agreed that in the light of the baby’s condition (or likely condition) it is not in his or her best interests to start intensive care.

(d) Between 23 weeks, 0 days and 23 weeks, six days of gestation, it is very difficult to predict the future outcome for an individual baby based on current clinical evidence for babies born at this gestation as a whole. Precedence should be given to the wishes of the parents regarding resuscitation and treatment of their baby with invasive intensive care. However, when the condition of a baby indicates that he or she will not survive for long, clinicians are not legally obliged to proceed with treatment wholly contrary to their clinical judgement, if they judge that treatment would be futile (see paragraph 8.32). As a first step, it will be necessary to determine whether a baby is suffering, whether any suffering can be alleviated, and the likely burden placed on the baby by intensive care treatment (see paragraph 9.32). Where parents would prefer that the clinical team made the decision about whether or not to initiate intensive care, the clinicians should determine what constitutes appropriate care for that particular baby. Where there has not been an opportunity to discuss a baby’s treatment with the mother (and where appropriate her partner) prior to the birth, the clinical team should consider offering full invasive intensive care until a baby’s condition and treatment can be discussed with the parents.

(e) Between 22 weeks, 0 days and 22 weeks, six days of gestation, standard practice should be not to resuscitate a baby. Resuscitation would normally not be considered or proposed. Only if parents request resuscitation, and reiterate this request, after thorough discussion with an experienced paediatrician about the risks and long-term outcomes, should resuscitation be attempted and intensive care be offered. The treating clinicians must concur that this is an exceptional case where resuscitation is in a baby’s best interests.

(f) Below 22 weeks of gestation, no baby should be resuscitated, except in the

situation described below in paragraph 9.19.

(g) When intensive care is not given, the clinical team should provide palliative care until the baby dies.

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The Groningen Protocol — Euthanasia in Severely Ill Newborns Eduard Verhagen, M.D., J.D., and Pieter J.J. Sauer, M.D., Ph.D.

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此原原原原文文文文刊於刊於刊於刊於New England Journal of Medicine 352(2005),pp.959-962

Of the 200,000 children born in the Netherlands every year, about 1000 die during the first year of life. For approximately 600 of these infants, death is preceded by a medical decision regarding the end of life. Discussions about the initiation and continuation of treatment in newborns with serious medical conditions are one of the most difficult aspects of pediatric practice.

Although technological developments have provided tools for dealing with many consequences of congenital anomalies and premature birth, decisions regarding when to start and when to withhold treatment in individual cases remain very difficult to make. Even more difficult are the decisions regarding newborns who have serious disorders or deformities associated with suffering that cannot be alleviated and for whom there is no hope of improvement.

Suffering is a subjective feeling that cannot be measured objectively, whether in adults or in infants. But we accept that adults can indicate when their suffering is unbearable. Infants cannot express their feelings through speech, but they do so through different types of crying, movements, and reactions to feeding. Pain scales for newborns, based on changes in vital signs (blood pressure, heart rate, and breathing

pattern) and observed behavior, may be used to determine the degree of discomfort and pain.

Experienced caregivers and parents are able to evaluate the degree of suffering in a newborn, as well as the degree of relief afforded by medication or other measures. In the Netherlands, euthanasia for competent persons older than 16 years of age has been legally accepted since 1985.

The question under consideration now is whether deliberate life-ending procedures are also acceptable for newborns and infants, despite the fact that these patients cannot express their own will. Or must infants with disorders associated with severe and sustained suffering be kept alive when their suffering cannot be adequately reduced?

In the Netherlands, as in all other countries, ending someone's life, except in extreme conditions, is considered murder. A life of suffering that cannot be alleviated by any means might be considered one of these extreme conditions. Legal control over euthanasia in newborns is based on physicians' own reports, followed by assessment by criminal prosecutors.

To provide all the information needed for assessment and to prevent interrogations by police officers, we developed a protocol, known as the Groningen protocol, for cases in which a decision is made to actively end the life of a newborn. During the past few months, the international press has been full of blood-chilling accounts and misunderstandings concerning this protocol.

Infants and newborns for whom such end-of-life decisions might be made can be divided into three categories.1 First, there are infants with no chance of survival. This group consists of infants who will die soon after birth, despite optimal care with the most current methods available locally. These infants have severe underlying disease, such as lung and kidney hypoplasia.

Infants in the second group have a very poor prognosis and are dependent on intensive care. These patients may survive after a period of intensive treatment, but expectations regarding their future condition are very grim.

They are infants with severe brain abnormalities or extensive organ damage caused by extreme hypoxemia. When these infants can survive beyond the period of intensive care, they have an extremely poor prognosis and a poor quality of life.117

Finally, there are infants with a hopeless prognosis who experience what parents and medical experts deem to be unbearable suffering. Although it is difficult to define in the abstract, this group includes patients who are not dependent on intensive medical treatment but for whom a very poor quality of life, associated with sustained suffering, is predicted. For example, a child with the most serious form of spina bifida will have an extremely poor quality of life, even after many operations. This group also includes infants who have survived thanks to intensive care but for whom it becomes clear after intensive treatment has been completed that the quality of life will be very poor and for whom there is no hope of improvement.

Deciding not to initiate or to withdraw life-prolonging treatment in newborns with no chance of survival is considered good practice for physicians in Europe and is acceptable for physicians in the United States.

Most such infants die immediately after treatment has been discontinued.

Neonatologists in the Netherlands and the majority of neonatologists in Europe are convinced that intensive care treatment is not a goal in itself. Its aim is not only survival of the infant, but also an acceptable quality of life. Forgoing or not initiating life-sustaining treatment in children in the second group is acceptable to these neonatologists if both the medical team and the parents are convinced that treatment is not in the best interest of the child because the outlook is extremely poor.

Confronted with a patient in the third category, it is vital for the medical team to have

as accurate a prognosis as possible and to discuss it with the parents. All possible measures must be taken to alleviate severe pain and discomfort. There are, however, circumstances in which, despite all measures taken, suffering cannot be relieved and no improvement can be expected. When both the parents and the physicians are convinced that there is an extremely poor prognosis, they may concur that death would be more humane than continued life. Under similar conditions, a person in the118 Netherlands who is older than 16 years of age can ask for euthanasia.

Newborns, however, cannot ask for euthanasia, and such a request by parents, acting as the representatives of their child, is invalid under Dutch law. Does this mean that euthanasia in a newborn is always prohibited? We are convinced that life-ending measures can be acceptable in these cases under very strict conditions: the parents must agree fully, on the basis of a thorough explanation of the condition and prognosis; a team of physicians, including at least one who is not directly involved in the care of the patient, must agree; and the condition and prognosis must be very well defined.

After the decision has been made and the child has died, an outside legal body should determine whether the decision was justified and all necessary procedures have been followed.

A national survey of neonatologists in the Netherlands has shown that each year there are 15 to 20 cases of euthanasia in newborn infants who would be categorized in the third group.2 According to Dutch law, it is a doctor's duty to file a death certificate when a patient has died from natural causes. If a death is due to euthanasia, it cannot be certified as "natural." The doctor must inform the coroner, who inspects the body and, in turn, informs the district attorney, whose office reviews each case in light of the applicable laws or jurisprudence. The district attorney presents the case, together with his or her own opinion, to the College of Attorneys General, whose four

members manage the national public prosecution department and provisionally decide whether or not to prosecute. The final decision is made by the minister of justice. Two court cases, decided in the mid-1990s, regarding euthanasia in infants in the Netherlands provide some guidance for both judges and physicians.

In the first case, a physician ended the life of a newborn who had an extreme form of spina bifida. In the second case, a physician ended the life of a newborn who had trisomy 13. Both cases involved a very limited life expectancy and extreme suffering that could not be alleviated. In their 119 verdicts, the courts approved the procedures as meeting the requirements for good medical practice. Although these rulings have given some guidance, many organizations have repeatedly pleaded for clearer guidelines, arguing that a committee with multidisciplinary (medical, legal, and ethical) expertise would be more capable than judges of assessing such cases.

Physicians would be expected to be much more willing to report procedures to such a committee than they are to report to a district attorney. The Dutch government, however, has neither created a committee nor offered other guidance, despite having promised repeatedly, since 1997, to do so.

Twenty-two cases of euthanasia in newborns have been reported to district attorneys' offices in the Netherlands during the past seven years. Recently, we were allowed to review these cases.3 They all involved infants with very severe forms of spina bifida.

In most cases (17 of the 22), a multidisciplinary spina bifida team was consulted. In the remaining five cases, at least two other independent medical experts were consulted. The physicians based their decisions on the presence of severe suffering without hope of improvement. The decisions were always made in collaboration with, and were fully approved by, both parents. The prosecutor used four criteria to assess each case: the presence of hopeless and unbearable suffering and a very poor quality of life, parental consent, consultation with an independent physician and his or her

agreement with the treating physicians, and the carrying out of the procedure in accordance with the accepted medical standard. The conclusion in all 22 cases was that the requirements of careful practice were fulfilled. None of the physicians were prosecuted.

Given that the national survey indicated that such procedures are performed in 15 to 20 newborns per year, the fact that an average of three cases were reported annually suggests that most cases are simply not being reported. We believe that all cases must be reported if the country is to prevent 120 uncontrolled and unjustified euthanasia and if we are to discuss the issue publicly and thus further develop norms regarding euthanasia in newborns. With that aim, we developed a protocol in 2002, in close collaboration with a district attorney.

The protocol contains general guidelines and specific requirements related to the decision about euthanasia and its implementation. Five medical requirements must be fulfilled; other criteria are supportive, designed to clarify the decision and facilitate assessment. Following the protocol does not guarantee that the physician will not be prosecuted. Since implementing this protocol, our group has reported four cases in which we performed a deliberate life-ending procedure in a newborn. None have resulted in prosecution. Dilemmas regarding end-of-life decisions for newborns with a very poor quality of life and presumably unbearable suffering and no hope of improvement are shared by physicians throughout the world. In the Netherlands, obligatory reporting with the aid of a protocol and subsequent assessment of euthanasia in newborns help us to clarify the decision-making process. This approach suits our legal and social culture, but it is unclear to what extent it would be transferable to other countries. Source Information Dr. Verhagen is the clinical director and Dr. Sauer the chairman of the pediatrics department at University Medical Center Groningen, Groningen, the Netherlands. Dr. Verhagen is also an

attorney.