Termination of life (neonates)
Parliamentry document, 29 November 2005
President of the House of Representatives
of the States General
Postbus 20018
2500 EA DEN HAAG
IBE/E-2637467
November 29, 2006
In the position paper on the report entitled ‘Medical decisions at the end of life’ (Parliamentary Papers, House of Representatives 2003/2004, 29 200 XVI, no. 268) we undertook to inform the House on the subject of unrequested termination of life in the case of neonates. Please see our findings below.
1. Background
Termination of life on request is regulated in the Act on the Termination of Life on Request and Assisted Suicide. Termination of life without a request is an offence under article 293 of the Criminal Code. In certain circumstances, the doctor may invoke the defence of necessity. The patient’s suffering must in such circumstances be severe, compelling the doctor to choose between his/her duty to save lives on the one hand and to do everything in his/her power to prevent unbearable suffering on the other. That is never a simple choice, particularly in situations involving unrequested termination of life. If the doctor exercises due care, termination may be justified. What exercising due care entails is dealt with in the Prins ruling (Amsterdam Appeal Court, 7 November 1995, Nederlandse Jurisprudentie (NJ) 1996, 113) and the Kadijk ruling (Leeuwarden Appeal Court, 4 April 1996, Tijdschrift voor Gezondheidszorg 1996, no. 1).
Terminating the life of a patient in great suffering without a request to that end results in an unnatural death. It must therefore be reported to the Public Prosecution Service, which investigates the way in which termination took place and decides whether or not to prosecute the doctor in question.
Doctors find this procedure very stressful, since despite their conviction that they acted with due care, they are under suspicion of murder. For this reason, the then Ministers of Justice and of Health, Welfare & Sport set up a consultative group charged with formulating proposals (based on the due care criteria governing medical procedures relating to newborn infants with serious disorders) for a procedure for reporting and reviewing cases in which such procedures had led to intentional termination of life. In 1997 the consultative group published a report entitled ‘Toetsing als spiegel van de medische praktijk’ (Review as a reflection of medical practice). Its conclusions are in line with the due care criteria set out in the rulings referred to above.
On 29 January 2003 we received a letter from the Royal Dutch Medical Association (KNMG) drawing attention, on behalf of a number of other organisations, to reporting and review procedures in the case of unrequested termination of life. After a new government had been formed, the State Secretary for Health, Welfare and Sport invited representatives of these organisations and other experts to a meeting on 10 February 2004. At this meeting the participants strongly advocated the development of clear reporting procedures for unrequested terminations.
In the summer of 2004, we drew up a position paper on the basis of the findings of the ‘Medical decisions at the end of life’ report (Parliamentary Papers, House of Representatives 2003/2004, 29 200 XVI, no. 268). In that paper we promised to send a letter to Parliament by the end of 2004 with our views on a response to the need felt by the medical profession for more clarity regarding unrequested termination of life. Further consultations were held to this end, for example in spring 2005 with representatives of the Ministries of Health, Welfare & Sport and Justice, and with the national office of the Public Prosecution Service. Issues discussed included the due care criteria a doctor would need to meet to avoid prosecution for terminating the life of a seriously ill newborn child.
The Dutch Paediatrics Association was also active in this field. In June 2005, it accepted the protocol on actively terminating the life of neonates with a serious disorder (drawn up by Groningen University Medical Centre (UMCG) and thus known as the Groningen protocol) as the national guideline. The Public Prosecution Service was involved as a source of information in drawing up the protocol: the Public Prosecutor’s Office in Groningen gave the UMCG the ‘Medical decisions at the end of life’ report, indicating that it seemed to be compatible with existing case law in this field. It emphasised that neither the report nor the protocol should give rise to expectations on how the Public Prosecution Service would deal with any specific case. According to the Public Prosecution Service, the protocol provides sufficient practical information to enable it to assess whether a doctor has exercised due care in terminating the life of a newborn infant.
In addition to seeking greater clarity regarding termination of the life of seriously ill neonates, the medical profession has a similar wish when it comes to cases of late-term termination of pregnancy where the doctor is liable to prosecution. These cases involve terminating pregnancy after 24 weeks in special cases.
In 1999 the government stated in a letter to the President of the House of Representatives that it wished to support careful decision-making in certain cases of late termination where the doctor was liable to prosecution by making it obligatory to report such cases to a central committee of experts for review (Parliamentary Papers, House of Representatives, 1998/99, 26 717, no. 1, pp. 7 and 8).
On the basis of the above developments, we would like to meet the need felt by the medical profession for greater clarity concerning termination of the life of newborn infants whose suffering is severe, and terminations of late-term pregnancy where the doctor is liable to prosecution. In doing so, we bear in mind that it is also important for parents and unborn children for there to be clarity on how doctors deal with the problems outlined above.
2. Scope of the proposal
Before describing the procedure to be followed in terminating the life of seriously ill neonates and in termination of late-term pregnancy, it is important to clearly define the cases in which these are possible options. It is also important to bear in mind that not all cases relating to end-of-life decisions involve an unnatural death. Obviously, if the death is a natural one there is no criminal offence at issue, nor does any special procedure have to be followed.
a. Termination of life of neonates
Children may be born with very poor prospects of survival, or of reasonable health in later life. In such cases, the decision on whether medical treatment has any point is taken on the basis of current medical opinion. It may be clear that the child will die either within a few days or a few months after birth. In such cases, medical treatment is pointless. It is then part of normal medical procedure not to start treatment or to end it. The child in question then dies a natural death.
Another possibility is that, with treatment, the child may have a limited chance of survival, but that its health prospects in later life may be extremely poor. Whether treatment has any point is a question that must then be resolved on the basis of current medical opinion. The attending physician draws up an overall prognosis of the child’s current and future health situation, taking into account the relationship between factors such as the expected degree of suffering, life expectancy, the degree of distress involved in treatment, the expected ability to communicate and to be self-reliant, and dependence on the medical/care sector. If the situation is serious, it is normal medical procedure not to start treatment or to end it. Palliative care may be given up to the time of death and may have the effect of shortening life. In such cases there is no question of termination of life: these are natural deaths, and do not have to be reported.
Termination of life is only at issue when the life of a newborn infant is intentionally shortened because of the extreme nature of its suffering. In some cases the child would have died anyway. In other cases, the child might be able to survive but there is no possibility of any improvement in its health, resulting in constant, unbearable suffering with no prospect of improvement. There is also no prospect of an independent life. In these cases palliative care will also be given. However, termination of life leads to an unnatural death which must be reported to the forensic pathologist.
Since most of the cases reported involve serious forms of spina bifida, the impression has unfortunately been created that certain disorders nearly always lead to termination. This is not true. Only the actual degree of suffering can serve as a basis for the decision to terminate life. Patients’ organisations have expressed concerns about the misconceptions that have arisen around these disorders. Spina bifida, for example, is in most cases treatable, and patients can lead perfectly acceptable lives. We would concur with this view. Life is worth protecting, and this applies to all of us, disabled or not.
b. Termination of late-term pregnancy
Like termination of the lives of neonates, termination of late-term pregnancy involves the death of a child – in this case unborn – either at or shortly after termination. In this connection it is important to recall the distinction between category 1 and 2 cases (see the letter from the government to the President of the House of Representatives of 6 September 1999, Parliamentary Papers, House of Representatives 1998/99, 26 717, no. 1 concerning termination of late-term pregnancies). Below we discuss this distinction in greater detail.
Partly on the basis of the premises and conclusions of the report entitled ‘Termination of late-term pregnancies: due care and review’ published by the consultative group set up to consider this issue, the following definition was drawn up. Termination of late-term pregnancy is a procedure that aims to terminate a pregnancy after 24 weeks because a serious foetal disorder has been diagnosed and which results in the death of the foetus. The report states that it may be acceptable according to prevailing medical standards to terminate the life of an unborn child. It distinguishes between two categories of serious foetal disorders where late-term termination may be considered acceptable.
Terminating a pregnancy falls under article 296 of the Criminal Code in conjunction with the Termination of Pregnancy Act. On the basis of medical opinion, the point at which a foetus becomes viable outside the mother’s body has been set at 24 weeks’ gestation. In other words, under article 296, paragraph 5, termination of pregnancy up to 24 weeks is not a criminal offence provided the requirements laid down in the Act are complied with. After 24 weeks, however, article 82a of the Criminal Code applies. This article makes it an offence to kill a foetus that might reasonably be expected to have survived outside the mother’s body.
Category 1 cases are those in which the unborn child cannot reasonably be expected to survive outside the mother’s body. The disorder is untreatable. The baby is almost certain to die during delivery or immediately after birth. Because of a serious congenital disorder, the foetus is not viable and will never be so. As a result, the reasoning behind article 82a becomes inapplicable, since the aim of the article is to protect the life of the viable unborn child through the criminal law, and termination in these situations falls outside its scope. Although terminating the life of a foetus that is not viable independent of the mother does not fall under the scope of Article 82a, it nevertheless remains within the scope of article 296, paragraph 5 of the Criminal Code which, as indicated above, states that termination is not an offence if the requirements of the Termination of Pregnancy Act have been met. In such cases the public prosecutor is not required to decide whether or not to prosecute. However, the termination must be reported, under the Burial and Cremation Act, to the municipal forensic pathologist, who in turn informs the public prosecutor. The reason is that an unnatural death has taken place, since late-term termination is an active intervention whose aim is the death of the foetus. The Dutch Association of Obstetricians and Gynaecologists established guidelines at a meeting of its members in November 2003 describing the decision-making procedure preceding late-term termination for category 1 cases. The guidelines also provide for a form of peer review and an appeals committee decides whether the doctor acted with due care. The guidelines take into account the statutory provisions.
The second category covers foetuses that have anomalies leading to serious and incurable functional disorders but which might reasonably be expected to have a chance of survival, although mostly a very limited one. Without medical intervention, the disorder will result in death. Medical intervention will however lead to lifelong suffering and may even be deemed to be harmful. Termination of pregnancy in the case of disorders falling into this category nevertheless falls within the scope of article 82a of the Criminal Code and is therefore in principle an offence. Invoking necessity as a ground for immunity from prosecution may in some cases be successful. But necessity can only be successfully invoked if it has been established that according to prevailing medical opinion, the disorder affecting the foetus is of such a nature that medical intervention after birth would be pointless from a medical point of view.
3. Review procedure
We would propose the following procedure on the basis of the documents, case law and principles referred to above.
Terminating the life of neonates who are in great suffering and termination of late-term pregnancies falling in category 2 remain offences. Our choice would be to set up a committee to provide the Public Prosecution Service with expert advice in specific cases. The attending physician who terminates the life of the neonate or the late-term pregnancy does not draw up a death certificate, but reports the death under section 7, subsection 3 of the Burial and Cremation Act to the municipal forensic pathologist by filling in the form prescribed in article 2 of the Royal Decree of 6 March 2002 (Bulletin of Acts and Decrees 2002, 140). The municipal forensic pathologist carries out a post mortem and informs the public prosecutor by filling in the form prescribed by Royal Decree of 17 December 1993 (Bulletin of Acts and Decrees 1993, 688) for neonates or that prescribed in article 3 of the Royal Decree of 6 March 2002 for late-term terminations. The forensic pathologist has to enter on the form his conclusions as to the pathology of the disorder and whether another doctor was consulted. Currently, the forensic pathologist sends these documents to the public prosecutor. Under the proposed arrangement, the forensic pathologist would send them to a central five-member committee of experts consisting of a chairperson, three physicians (sharing a single vote) and an ethicist. The three physicians would be specialised in paediatrics, for example a neonatologist and a child neurologist, with a gynaecologist in the case of late-term terminations. On the basis of the criteria set out below, the committee will decide whether the doctor acted with due care in terminating the life of the neonate or the late-term pregnancy. The committee’s decision will then be forwarded to the Board of Procurators General. The Board then assesses whether the doctor has complied with the criteria and may take account of the committee’s decision in deciding whether or not to prosecute. The committee’s decision does not therefore replace the public prosecutor’s decision, but serves as a form of expert advice. If the Board decides to prosecute, the relevant public prosecutor will be charged with instituting proceedings. But not every failure to comply with the due care criteria will lead to prosecution.
The proposed procedure will be laid down in an instruction from the Board.
The procedure will benefit both the Public Prosecution Service and doctors. The standards laid down and the decision of the committee offer doctors the certainty that the case will be assessed not only from a legal perspective but also from a medical and ethical point of view. In addition, doctors will have guidelines to follow in situations involving unrequested termination of life and of late-term pregnancies, putting an end to their uncertainties on these issues.
4. Due care criteria
Terminating the life of neonates who are in great suffering and termination of late-term pregnancies falling in category 2 call for the highest possible standards of care. The criteria against which such actions will be assessed have been taken from case law and the reports referred to above. The Public Prosecution Service will take these criteria into account when deciding whether or not to prosecute. The committee of experts will take them into account when deciding whether doctors have acted with due care.
In terminating the life of a neonate, the physician has acted with due care if:
a. according to prevailing medical opinion, the child’s suffering was unbearable and without prospect of improvement, which means that the decision to withhold treatment was justified. There was therefore no doubt about the diagnosis and prognosis, in the light of prevailing medical opinion;
b. the child’s parents gave their consent;
c. the physician fully informed the child’s parents of the diagnosis and prognosis. This means that together with the parents the physician came to the firm conclusion that there was no reasonable alternative in the light of the child’s situation;
d. the physician consulted at least one other, independent physician who saw the child and gave a written opinion on compliance with these due care criteria. Alternatively, the physician could have asked for the views of the medical team attending the child;
e. the termination was performed with due medical care and attention.
In terminating a late-term pregnancy, the physician acted with due care if:
a. the foetus had a disorder falling into category 2, which means that it was of such a nature that after the child had been born medical treatment would have been withheld on the grounds that it would be pointless from a medical point of view according to medical opinion. In other words, there was no doubt about the diagnosis or the prognosis according to prevailing medical opinion. What is more, in that same medical opinion, continuing the pregnancy would have made no meaningful contribution to a more accurate diagnosis;
b. the child was currently suffering or could be expected to suffer, with no prospect of improvement;
c. the mother had expressly asked for the pregnancy to be terminated because of physical or mental suffering caused by the situation;
d. the physician fully informed the child’s parents of the diagnosis and prognosis. This means that together with the parents the physician came to the firm conclusion that there was no reasonable alternative in the light of the child’s situation;
e. the physician consulted at least one other, independent physician who gave a written opinion on compliance with these due care criteria. Alternatively, the physician could have asked for the views of the medical team;
f. the pregnancy was terminated with due medical care and attention.
It is important with a view to assessing the due care criteria for the attending physician’s report to give the municipal forensic pathologist an accurate picture of whether they have been complied with. The report form will therefore be supplemented with questions relating to the criteria.
5. The committee’s composition and method of operation
As indicated above, the committee will consist of five members: a chairperson, three physicians from different paediatric disciplines, and an ethicist. The chairperson will be a lawyer. All members will be appointed for a period of six years by the State Secretary for Health, Welfare and Sport and the Minister of Justice. They may be reappointed for a further six years. The committee will be assisted by a secretary, who will have an advisory vote at meetings. The committee members may be discharged at their own request or for unsatisfactory performance. They will receive an attendance fee and travel expenses in accordance with existing rules for public servants.
In order to assess a case, the committee will be empowered to ask the physician who performed the termination to explain his actions in writing or orally. It may also request further information from one or more members of the medical team concerned. In addition, the committee may consult third parties depending on the specific expertise required.
The committee’s decision will be based on the due care criteria set out above. It can only be finalised once all committee members have voted. The Public Prosecution Service is then informed of the decision, which it may take into account as a form of expert advice in deciding whether to prosecute. If the decision is that the doctor did not comply with the due care criteria, the Health Care Inspectorate will be informed. The attending physician receives a copy of the decision. A version of the decision (with all names removed) will be published in a databank open to the public.
The committee members have a duty of confidentiality and may decline to give evidence. The committee issues an annual report to the State Secretary for Health, Welfare and Sport and the Minister of Justice. It is set up by ministerial order and has its own rules of procedure.
6. Conclusion
We believe that this proposal meets the demand from the medical profession and others for more clarity concerning the application of the criminal law to termination of the life of neonates and of late-term pregnancies. The due care criteria and the reporting form provide a uniform structure to guide attending physicians through the various procedural steps and in answering all the questions relating to compliance with the criteria. They can thus assist physicians in dealing with these very difficult situations. This does not mean, however, that physicians can ask the committee of experts for advance approval of a termination of either kind. The committee reviews actions that have already been taken.
We recognise too that in recent years much work has been done in the various medical organisations and consultative groups referred to above with the aim of achieving a sound medical and legal approach to these issues. Their work has been most valuable to us in arriving at the proposed arrangement.
Clémence Ross-van Dorp
State Secretary for Health, Welfare and Sport
Piet Hein Donner
Minister of Justice
