Regulating End of Life Choices: autonomy versus protection of the vulnerable

 

If there is a right to life, is there a right to not choose life? Many jurisdictions have regulations that enable patients to choose life-prolonging, life-shortening, or life-ending (for example do not resuscitate directives or removal of artificial feeding tubes) medical treatments in certain end of life situations. However, very few jurisdictions enable their citizens the choice to end their lives. Several countries are currently debating whether or not to enable their citizens to end their lives with the assistance of the state, and New Zealand is the most advanced in this process with its End of Life Choice Bill. This howtoregulate article examines the regulations of those jurisdictions that have developed end of life regulations on the basis of its complexity and the level of autonomy and protection afforded to those considering to end their life.

 

Regulating for end of life choices is a sensitive topic and so terminology needs to be clear and unambiguous. In examining those jurisdictions with end of life regulations the debates in those societies used a variety of terms, and so good regulations provided clear definitions. End of life is a general term to refer to the choices available in regulations to end life, such as euthanasia, assisted dying and assisted suicide. End of life refers to those situations in which a severe deterioration in health, due to the evolution of a disease or another cause, threatens the life of a person irreversibly in the near future1.

It relates to the specific context of the end of life, a situation in which the main purpose of any medical treatment is palliative, focusing on the quality of life or, at the very least, the control of symptoms that are liable to impair the quality of the end of a patient’s life.2

In all but two jurisdictions (Switzerland and Oregon) end of life choices are administered by a medical physician, who administer the death-causing substance. In European jurisdictions with end of life regulations, physicians that administer the death-causing substance use the term ‘euthanasia’. However, in Canada and Australia, they use the term ‘assisted dying’. In Switzerland and Oregon, the person requesting to end their life must self-administer the death-causing substance that has been prescribed for that purpose, and the term ‘assisted suicide’ is used.

I. International and supranational regulatory framework

United Nations (UN)

1. There exists no international regulatory framework facilitating people to end their lives. International regulations concerning life generally are contained in the Universal Declaration of Human Rights (UDHR) (Article 3 ‘…everyone has a right to life…’) and its associated Treaties, including the International Covenant on Civil and Political Rights3 (ICCPR), Convention on the Rights of the Child4 and Convention on the Rights of Persons with Disabilities5. These international treaties do not contain an explicit ‘right to die’.

2. The Human Rights Committee (HRC) of the UN Office of the High Commissioner for Human Rights (UNOCHR) is made up of 18 independent experts who are persons of high moral character and recognised for their competence in the field of human rights6. The HRC are responsible for providing official interpretation of the ICCPR, known as “General Comment”. General Comments have considerable power on legislators and national jurisdictions. The HRC is currently developing General Comment 36 about Article 6 (the right to life) of the ICCPR7 and are considering the inclusion of medically assisted dying to “afflicted adults”:

[While acknowledging the central importance to human dignity of personal autonomy, the Committee considers that States parties should recognize that individuals planning or attempting to commit suicide may be doing so because they are undergoing a momentary crisis which may affect their ability to make irreversible decisions, such as to terminate their life. Therefore,] States should take adequate measures, without violating their other Covenant obligations, to prevent suicides, especially among individuals in particularly vulnerable situations. At the same time, States parties [may allow] [should not prevent] medical professionals to provide medical treatment or the medical means in order to facilitate the termination of life of [catastrophically] afflicted adults, such as the mortally wounded or terminally ill, who experience severe physical or mental pain and suffering and wish to die with dignity. In such cases, States parties must ensure the existence of robust legal and institutional safeguards to verify that medical professionals are complying with the free, informed, explicit and, unambiguous decision of their patients, with a view to protecting patients from pressure and abuse.”8

However, scanning the submissions provided by 23 states parties, the inclusion of words that define ‘the right to life’ as ‘allowing or not preventing’ end of life choices of afflicted adults was contentious9. The HRC are also responsible for overseeing states parties’ implementation of the treaties and have previously made comments about states parties’ end of life regulations10.

The Council of Europe (CoE)

3. The CoE has no regulatory framework facilitating persons to end their lives. Although some member states have domestic regulations that enable persons to end their lives, while others expressly prohibit this, is permissible because member states of the CoE maintain their sovereignty but commit themselves through conventions and treaties. Much like the UDHR and its associated treaties, the European Convention on Human Rights (ECHR) does not contain a right to die and Article 2 concerns the right to life. The European Court of Human Rights has also made judgements in relation to the scope of Article 3 of ECHR (prohibition of inhuman or degrading treatment), Article 8 (right to respect for private life), Article 9 (freedom of conscience) and Article 14 (prohibition of discrimination). A detailed examination of the Court’s judgements of these articles is beyond the scope of this howtoregulate article, however, a summary of some of the judgements is contained in the Factsheet – End of life and the ECHR. Interestingly, the Court did find in Pretty v. the United Kingdom11, that Ms Pretty’s right to respect for private life and freedom of conscience was violated but did not constitute a human rights violation (Articles 8 and 9 of the ECHR). The Court recognised states’ sovereignty in the protection of the individual’s life12 and so prohibitions placed on suicide by the UK Suicide Act, and the refusal of the Prosecutor to grant immunity to Ms Pretty’s husband for assisting in her suicide, was not disproportionate and could be justified as “necessary in a democratic society”13.

4. The Convention on Human Rights and Biomedicine (CHRB), a European patient rights treaty, is the first legally-binding international text designed to preserve human dignity, rights and freedoms, through a series of principles and prohibitions against the misuse of biological and medical advances. The CHRB provides that a person has to give the necessary consent for treatment expressly, in advance, except in emergencies, and that such consent may be freely withdrawn at any time. The treatment of persons unable to give their consent, such as children and people with mental illnesses, may be carried out only if it could produce real and direct benefit to his or her health. A Committee on Bioethics facilitates the implementation of principles in the CHRB and has developed a Guide in end of life situations that addresses complex and sensitive questions of medical end of life situations. The Guide is a useful tool for regulators developing end of life regulations because majority of end of life situations occur in a medical context be it in a hospital, palliative care facility or an aged care facility, and the Guide provides good examples and highlights where issues are contentious.

World Medical Association (WMA)

5. The WMA is an international organisation representing physicians and is made up of 111 National Medical Associations. Its aim is to serve humanity by achieving the highest international standards in medical education, medical science, medical art and medical ethics, and health care for all people in the world14. The WMA promotes the highest possible standards of medical ethics, and provides guidance to physicians through its declarations, resolutions and statements. The WMA has two declarations concerning end of life choices: terminal illness (paragraph 3 of Principles) and euthanasia, both of which state unequivocally that deliberately ending the life of a patient, be it euthanasia or assisted suicide, even at the patient’s request, is unethical. However, this does not prevent the physician from respecting the desire of a patient to allow the natural process of death to follow its course at the terminal phase of sickness15. Notwithstanding this, the WMA organised on 16 and 17 November 2017, a WMA European Region Meeting on End of Life Questions, a first for the organisation on this topic16. The purpose of the meeting was to gather leading European medical professionals, legal authorities, experts in palliative care and medical ethics, theological scholars and philosophers to debate the different policies on these issues, to explore patient rights and treatment limitations, and to better understand public opinion regarding end-of-life questions.

II. National regulations

1. Fifteen jurisdictions in the world have legislation regulating persons requesting to end their life17. The most recent jurisdiction that passed legislation on 5 December 2017, will permit the medical system to receive requests for voluntary assisted dying from June 2019. New Zealand’s End of Life Choice Bill is currently open for public consultation before proceeding to the final parliamentary approval stage. The following jurisdictions examined have been chosen on the basis of the regulatory approach adopted, and their complexity, starting with jurisdictions with the least complex regulations.

Switzerland

2. Switzerland can be described as passively regulating for end of life situations in the sense that assisting in a suicide will not be a criminal offence so long as no selfish motive for assisting exists. Article 115 of the Swiss Criminal Code 1937 provides (in French) that:

Celui qui, poussé par un mobile égoïste, aura incité une personne au suicide, ou lui aura prêté assistance en vue du suicide, sera, si le suicide a été consommé ou tenté, puni d’une peine privative de liberté de cinq ans au plus ou d’une peine pécuniaire.18

In practice this means that a physician may prescribe a death-causing substance, which is then self-administered by the person requesting to die. Apart from the sentence at Article 115 of the Swiss Penal Code above, there exists no specific legislation on end of life choices.

3. The Swiss Academy of Medical Sciences (SAMS) is responsible for setting the standards of health care and ethics physicians in Switzerland must follow and it has developed three guidelines concerning end of life care: end of life care; Palliative Care; and Decisions on cardiopulmonary resuscitation. It is recognised in the end of life care guidelines that Article 115 permits persons, for unselfish reasons, to help another person commit suicide. Where a physician has received such a request for suicide assistance from a patient it can give rise to difficult conflict of interests. The guidelines state that assisted suicide is not a physician’s task as it contradicts the aims of medicine and yet consideration of the patient’s wishes is fundamental for the physician-patient relationship. This dilemma, the guidelines states, is a personal decision of conscience of the physician. The physician may refuse help in deciding to assist a person to commit suicide, the physician must check the following preconditions19:

  • The patient’s disease justifies the assumption that he is approaching the end of life. Alternative possibilities for providing assistance have been discussed and, if desired, have been implemented.

  • The patient is capable of making the decision, his wish has been well thought out, without external pressure, and he persists in this wish. This has been checked by a third person, who is not necessarily a physician.

  • The final action in the process leading to death must always be taken by the patient herself/himself.

The Swiss regulatory framework has a unique feature that involves non-governmental organisations (NGO) such as Dignitas, which accompany Swiss and non-Swiss nationals with assisted suicide. As the Swiss Criminal Code only criminalises assistance in suicide involving selfish motives, such NGOs are permitted to assist anyone as no such motive exists in their assistance, so long as the physician assisting in the suicide has satisfied the SAMS guidelines above.

Oregon, United States of America

4. In 1997, Oregon became the first jurisdiction through its Death with Dignity Act (DDA), to allow terminally ill Oregon residents to end their lives through the voluntary self-administration of lethal medications, expressly prescribed by a physician for that purpose. Although the DDA legalises physician-assisted suicide, it specifically prohibits euthanasia, where a physician or other person directly administers a medication to end another’s life. To request a prescription for a death causing substance, the DDA requires that a patient voluntarily express her/his wish to die and be: (a) an adult (age 18 or older); (b) an Oregon resident; (c) capable (able to make and communicate health care decisions); and (d) diagnosed with a terminal illness (incurable and irreversible) that will lead to death within six months20. Once meeting these four requirements the patient must fulfil the following to be eligible to request a prescription for a death causing substance21:

1. the patient must make two oral requests to her/his physician, separated by at least 15 days;

2. the patient must provide a written, witnessed request to his physician (two witnesses);

3. the prescribing physician and a consulting physician must confirm the diagnosis and prognosis;

4. the prescribing physician and a consulting physician must determine whether the patient is capable;

5. if either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder, he must refer the patient for a psychological examination;

6. the prescribing physician must inform the patient of feasible alternatives to assisted suicide, including comfort care, hospice care, and pain control; and

7. the prescribing physician must request, but may not require, the patient to notify his next-of-kin of the prescription request.

To comply with the DDA, physicians must report to Oregon Health Services all prescriptions for lethal medications. Reporting is not required if patients begin the request process but never receive a prescription. Physicians must inform pharmacists of the prescribed substance’s ultimate use. Physicians and patients who adhere to the DDA’s requirements are protected from criminal prosecution, and the choice of legal physician assisted suicide cannot affect the status of a patient’s health or life insurance policies. Physicians and health care systems are under no obligation to participate in the DDA22.

The Netherlands

5. Any action to terminate life is a criminal offence under Section 293(1) of the Dutch Criminal Code23 but there is an exemption at Section 293(2) from criminal liability where life is terminated by a medical doctor who meets the requirements of due care referred to in Section 2 of the Termination of Life on Request and Assisted Suicide (Review Procedures) Act [Wtl – Wet Toetsing Levensbeëindiging op Verzoek en Hulp bij Zelfdoding24]. The Dutch Wtl was the first to enable euthanasia by its physicians and assisted suicide that fulfil legislative due care criteria. The Wtl does not grant patients a right to euthanasia, and where physicians perform euthanasia or assist in a suicide of a patient, that did not fulfil the legislative due care criteria, the punishment is up to 12 years imprisonment or €82,000 fine25. Key features of the Dutch regulatory framework include26:

  • Only physicians (includes pharmacists preparing the death causing substances to be used) perform euthanasia or assistance with suicide, and are under no obligation to perform euthanasia, derived from a right to conscientious objection.

  • Euthanasia or assistance with suicide can only be performed after a voluntary and well-considered request from the patient.

  • Minors may themselves request euthanasia from the age of 12, although the consent of the parents or guardian is mandatory until they reach the age of 16. Sixteen and seventeen-year-olds do not need parental consent in principle, but their parents must be involved in the decision-making process. From the age of 18, young people have the right to request euthanasia without parental involvement. However, regardless of age, it has to be clear that a person’s request is voluntary and well-considered.

  • Euthanasia or assistance with suicide can only be performed in the case of unbearable suffering without any prospect of improvement and when there there is no reasonable alternative.

  • There does not necessarily have to be a terminal disease and/or a limited life-expectancy to meet the due care criteria.

  • Advance directives can outline the situations in which the patient concerned would wish euthanasia to be performed, this does not obviate the physicians responsibility to make an assessment about unbearable suffering without any prospect of improvement.

  • The Royal Dutch Medical Association and the Royal Dutch Pharmacists Association have developed a guideline on euthanasia, which states that ‘during the practice of euthanasia or physician-assisted suicide, the doctor must remain present. For the oral method (physician-assisted suicide), this can take several hours’.

  • Every case of euthanasia or assistance with suicide is assessed by a Regional Review Committee on Euthanasia (there are 5 in the Netherlands). This Committee submits a report every year to the Ministers of Health and of Justice, who then submit the report with their respective comments to the Dutch parliament.

  • Every 5 years an independent parliamentary committee reviews and evaluates the Wtl and case reports of euthanasia and assistance with suicide. So far 3 evaluations have been completed since the Wtl came into effect in 200227.

Belgium and Luxembourg

6. Belgium (28 MAI 2001 – Loi relative a` l’euthanasie) and Luxembourg (Loi du 16 mars 2009 sur l’euthanasie et l’assistance au suicide) also have laws concerning euthanasia, which are similar to that of the Netherlands. For example conditions around competency and voluntariness are the same as the Netherlands, and both require the patient to be suffering intractable and unbearable pain. Unlike the Netherlands, Belgium and Luxembourg require euthanasia requests to be made in writing by the patient, although there are rules for situations where the patient is unable to make a written request. In the case of Belgium, one month must be allowed to elapse between the patient’s written request and euthanasia28. Belgium expanded its euthanasia law in 2014 to include competent minors with a terminal illness. The Belgian legislation outlines the procedures for determining the minor’s competency by consulting with a child psychiatrist or psychologist, who examines the medical file of the minor patient and makes an evaluation of the minor’s capacity in writing29.

Canada

7. The Canadian Bill C-14 ‘An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying)’ was passed in June 2016 and came into effect in June 2017. The regulations for end of life choices in the now amended Criminal Code Section 241.1 Medical Assistance in Dying is considerably more complex, in terms of the steps between the request for medical assistance to die to actual death, and comprehensive than the aforementioned statutes of Europe. Like the Swiss and Dutch regulations, medical assistance in dying begins by creating exemptions in the Criminal Code for listed health care professionals from the offences of culpable homicide, of aiding suicide and of administering a noxious substance. The Criminal Code lists the following exempted health care professionals for the roles they may play in medically assisting a patient to die: medical practitioners, nurse practitioners, pharmacists, social workers, psychologists, psychiatrists and therapists30. A person aiding a patient to self-administer a substance that has been prescribed for that patient as part of the provision of medical assistance in dying in accordance with Section 241.2 of the Criminal Code is also exempt from an offence. The medical assistance in dying regulations enables both medically assisted death from self-administering a death causing substance and that administered by either a medical practitioner or nurse practitioner. The Canadian regulations are unique in enabling nurse practitioners to also administer death causing substances to persons, at their request. Interestingly, the sections of the Criminal Code concerning medical assistance in dying does not use the terms suicide or euthanasia, like the European statutes, suicide is a crime with the exemption of medical assistance in dying, and euthanasia is a not a term used at all.

8. Section 241.2(1) of the Criminal Code states that a person may receive medical assistance in dying only if they meet all of the following criteria31:

  • they are eligible — or, but for any applicable minimum period of residence or waiting period, would be eligible — for health services funded by a government in Canada;

  • they are at least 18 years of age and capable of making decisions with respect to their health;

  • they have a grievous and irremediable medical condition;

  • they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure; and

  • they give informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care.

Although Bill C-14 does not permit persons under 18 (‘mature minors’), those with requests where mental illness is the sole underlying condition and those with advance requests (also known as advance care/health directives) to access medical assistance to die, the Canadian Parliament has requested an independent review into issues relating to requests from such persons and the outcome to be reported to Parliament by June 2018.

Victoria, Australia

9. On 5 December 2017 the Australian state of Victoria passed legislation about end of life choices through its Voluntary Assisted Dying Bill, which will come into effect in June 2019 to give time for planning and establishment of the voluntary assisted dying framework. The Voluntary Assisted Dying Act 2017 (VADA) is one of the more complex regulations (the Victorian Bill contains 143 sections, the Canadian Bill, approximately 43 sections) in end of life choices and has 68 safeguard in place. It is similar to the Oregon DDA, in that it is only available to those with a terminal illness, who have 6 months to live32, although there is an exemption for persons with neurodegenerative conditions such as motor neurone disease and multiple sclerosis who have a life expectancy not exceeding 12 months33. The voluntary assisted dying framework in the VADA enables eligible persons to obtain a death causing substance within 10 days of requesting to die, after completing a three-step process involving two independent medical assessments. Key features of the VADA include:

  • To be eligible persons must be 18 years or more, an Australian resident or permanent resident and at the time of making the first request, have been an ordinary resident in Victoria for at least 12 months.

  • Must have decision-making capacity in relation to voluntary assisted dying, which is comprehensively defined at Part 1, Section 4 of the VADA, includes, inter alia understanding the information relevant to the decision, retaining that information, using or weighing that information as part of the process of making the decision and it should not be assume that a person does not have decision-making capacity based on appearance or because the person makes a decision that is, in the opinion of others, unwise.

  • A person diagnosed with a mental illness [within the meaning of the Mental Health Act 2014 (Vic)] only is not eligible. Neither is a person requesting access to voluntary assisted dying only because the person has a disability [as defined in the Disability Act 2006 (Vic)].

  • A person may access voluntary assisted dying once he/she has completed the three-step process involving a first request, medical assessment, written declaration, final request, appointed a contact person, the medical practitioner involved has certified that the process as required by the VADA has been completed and is the subject of voluntary assisted dying permit. Each step is to be recorded in writing.

  • At any point during the three-step process the person requesting access to voluntary assisted dying may not continue with the process.

  • A registered health practitioner has a right to refuse to assist in any of the steps listed at Section 7 of the VADA, such as providing information about voluntary assisted dying, participating in the request and assessment process, applying for a voluntary assisted dying permit or to supply, prescribe or administer a voluntary assisted dying substance.

  • Voluntary assisted dying option must not be initiated by a registered health practitioner, contravention of which is regarded as unprofessional conduct.

  • Contains minimum requirements for co-ordinating medical practitioners and consulting medical practitioners such as each must hold a fellowship with a specialist medical college, either of the two practitioners must have relevant expertise and experience in the disease, illness or medical condition expected to cause the death of the person being assessed.

  • The assessment phase requires the co-ordinating practitioner to have first completed approved training.

  • A person who is a subject of a voluntary assisted dying permit may self-administer the voluntary assisted dying substance and should that person later become unable to self-administer may make a request for a voluntary assisted dying permit for the medical practitioner to administer the substance.

  • Any unused voluntary assisted substance must be returned, within 15 days after the date of death, to the dispensing pharmacy. The penalty is up to a maximum of 12 months imprisonment.

  • The process for applications for civil reviews to the Victorian Civil and Administrative Tribunal (VCAT) and the power VCAT has to make determinations, such as interim and temporary orders.

  • Mandatory notification by employers and colleagues of registered health practitioners to report another registered health practitioners that has either initiated a discussion about voluntary assisted dying with a person in the course of providing health services, including protection from liability for any loss, damage or injury suffered by making such a notification.

  • Establishment of a Voluntary Assisted Dying Review Board that will monitor matters related to the voluntary assisted dying, provide annual reports to the Victorian Parliament, promote compliance with the VADA amongst other functions.

  • The Minister of Health is responsible for conducting a 5 year review of the operation of the VADA.

  • All the forms involved in the three-step assessment process are proscribed in the VADA and must be completed.

III. What we missed

1. Regulating pathways for assisted dying requires careful legislative drafting, monitoring and review, to ensure that the balance between autonomy and protecting vulnerable persons is observed and in line with parliamentary expectations. In this part of the howtoregulate article additional techniques are suggested to further strengthen either existing legislation or forthcoming legislation on end of life choices.

2. Certification of medical practitioners who are the final assessor in any end of life request would ensure consistency and compliance. It also presents another useful safeguard for legislators wary about abuse or non-compliance. The Victorian VADA outlines the minimum medical competence, including expertise in the particular disease, for health practitioners involved in the voluntary assisted death process at Part 3, Division 1 and the co-ordinating medical practitioner must not commence first assessment unless approved training completed (Section 17). To further improve on this Victorian safeguard, which may yet come to pass as the Victorian framework is currently being established, is to maintain a list of the medical practitioners that have completed such training and to develop a certification process for medical experts of rare diseases outside of the jurisdiction. The Netherlands maintains a list of medical practitioners with the necessary expertise but it is unknown how such expertise is certified as this is not contained in their regulations, and so appropriateness as a safeguard was not assessed34. The How to Regulate Handbook contains more specific information about certification processes in general at Chapter 7 and certifying bodies at Chapter 8.

3. At time of publishing 15 jurisdictions had end of life regulations, with one other soon to hold a parliamentary vote for end of life regulations. This could give rise to extreme cases ‘shopping around’ other jurisdictions when they are not satisfied with the end of life regulations within their jurisdiction of residency35. Jurisdictions could consider a mechanism for sharing information for ineligible requests for end of life, that respects the patient’s right to privacy but also reduces situations of ‘shopping around’. Additionally, where the medical practitioner suspects that a request for end of life is not voluntary, it should be a legislated notifiable incident to the central authority.

4. Most jurisdictions with end of life regulations had a central body for receiving, monitoring and evaluating end of life requests. It would be a useful addition to the end of life regulatory framework to establish advice hotlines for doctors, patients, family members and others wishing to gain information about end of life regulations, it also ensures consistency of information in line with the legislation. This same body should also manage whistle blowing channels so that persons with cases of abuse or non-compliance of end of life regulations can benefit from reporting a concern with anonymity or privacy, depending on how the scheme is developed.The Victorian VADA again provides a useful example of voluntary notification by persons at Section 77 and Section 78 outlines the protection from liability for persons making voluntary notifications. For more information about whistle blowing schemes see our howtoregulate article Whistleblowers: protection, incentives and reporting channels as a safeguard to the public interest

IV. Special aspects

Euthanasia and children

All jurisdictions, except the Netherlands (from age 12) and Belgium (competency of child to make a request to die is medically determined), with end of life regulations excluded children, minors below the age of 18, from having the competency to give consent to an end of life choice. Of the regulations reviewed for this howtoregulate article, the Dutch had the most liberal regulations concerning the end of life choices for minors, recognising that a minor from 12 years of age was capable of requesting euthanasia or an assisted suicide, and the Dutch Wtl contains due care criteria for such minors. Minors below 12 years are excluded as having the required capacity, and therefore cannot make requests to terminate their life. However, according to the Dutch government website about euthanasia and newborn infants, the Dutch law permits physicians to terminate the lives of newborn infants and to perform late-term abortion only on condition that they fulfil the following due care criteria36:

  • In the light of prevailing medical opinion, the child’s suffering must be unbearable and with no prospect of improvement. This means that the decision to discontinue treatment is justified. There must be no doubt about the diagnosis and prognosis;

  • Both the physician and the parents must be convinced that there is no reasonable alternative solution given the child’s situation;

  • The parents must have given their consent for the termination of life;

  • The parents must have been fully informed of the diagnosis and prognosis;

  • At least one other, independent physician must have examined the child and given a written opinion on compliance with the due care criteria listed above;

  • The termination must be performed with all due care.

In the case of late-term abortions, where abortions after the 24th week of pregnancy (the point at which the foetus becomes viable outside the mother’s womb) are excluded by the Dutch Termination of Pregnancy Act, and fall under the Dutch Criminal Code. Late-term abortions may be performed only in exceptional circumstances, with the following due care criteria37:

  • The unborn child must have a disorder so serious that medical experts believe that medical treatment following the birth will be futile. There must be no doubt about the diagnosis and prognosis;

  • The unborn child must be suffering, or must be likely to suffer following its birth, with no prospect of improvement;

  • The mother must make an explicit request for the pregnancy to be terminated on the grounds of the physical or mental suffering the situation is causing her;

  • The physician must have given the parents a full explanation of the diagnosis and prognosis. This means that both the physician and the parents must be convinced that there is no reasonable alternative solution given the child’s situation;

  • At least one other, independent physician must have examined the child and given a written opinion on compliance with the due care criteria listed above;

  • The pregnancy must be terminated with all due care.

The physician has a duty to notify the municipal pathologist following a late-term abortion or termination of the life of a newborn infant. The municipal pathologist will then inform the Public Prosecution Office, who will investigate the circumstances, and if it sees no particular reason for delay, the Public Prosecution Office will issue consent for the funeral. All cases of late-term abortions and termination of the life of a newborn infant are reported to the Central Committee of Experts on late-term abortions and termination of the life of a newborn infant.

Palliative care

Palliative care is defined by the World Health Organisation (WHO) as:

an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual38

The WHO also recognises that palliative care for children merits a further definition that takes into account the differences in a child’s body, mind and spirit39. In all jurisdictions examined, it was recognised that palliative care was inadequate and that in any request to end life, medical practitioners must first recommend palliative care. This regulatory approach recognises that persons seeking an end of life choice may not have known or had access to a suitable palliative care option. The limits of palliative care was also recognised because in some of the jurisdictions examined palliative care in their health systems was only accessible to those with particular illnesses, usually cancer, this raises issues about equity and discrimination.

Although there is a general WHO definition of a palliative care approach, the devil is indeed in the detail. For example should regulations of palliative care include or not include artificial hydration and nutrition in the terminal phase noting that this provides comfort to the person but also prolongs life. In the Netherlands, palliative sedation is part of a normal medical procedure because the drugs administered aim to alleviate suffering at the end of life and are not the cause of death40. With palliative sedation the drugs administered render the patient unconscious and pain-free, the side-effect of such drugs results in a hastening of death.

V. Public consultations

New Zealand, at time of publishing, is seeking public comments to its End of Life Choice Bill, which follows the legislative approach of Oregon and Victoria, in limiting access to assisted dying to those with a terminal illness likely to end their life within 6 months. However, the New Zealand Bill offers more flexibility on the time of life remaining and type of illness by including ‘or has a grievous and irremediable medical condition’. Like many of the end of life regulations, the New Zealand Bill defines an eligible person for assisted dying as being 18 years of age or more, a New Zealand citizen or permanent resident, is in an advanced state of irreversible decline in capability, experiences unbearable suffering and has the ability to understand the nature and consequence of assisted dying. The assisted dying process, like the Victorian one, is lengthy and is a four-step process involving two medical practitioners, possibly a specialist and the assisted dying registrar. If the person making the assisted dying request is eligible at the end of the process, the medical practitioner must discuss a likely timing and make provisional arrangements to be available, and advise the person of legislative methods for the administration of a lethal dose of medication at Section 15(3)(a) of the New Zealand Bill. Following the assisted death the medical practitioner must return any unused medication and report the death to the registrar. A review of the operation of the End of Life Choice Act must start three years after commencement and presented to Parliament. Thereafter, a review must be conducted every five years.

The Western Australian (WA) Parliament initiated an inquiry on the need for laws in WA to allow citizens to make informed decisions regarding their own end of life choices in August 2017, submissions closed in October 2017 but will be published in due course41. A series of hearings were completed in December 2017 with a variety of stakeholders. The outcomes of the inquiry are to be tabled in August 2018.

VI. Further links

As the most recent jurisdiction to enact legislation on end of life choices, the final report of the Ministerial Advisory Panel on Voluntary Assisted Dying in Australian state of Victoria, is a comprehensive report of all legal, political, social and medical issues involved with making regulations in this sensitive area.

https://www2.health.vic.gov.au/about/publications/researchandreports/ministerial-advisory-panel-on-voluntary-assisted-dying-final-report

The New Zealand report of its Health Committee in response to parliamentary consideration for regulations for end of life choices is another comprehensive report of all legal, political, social and medical issues involved with making regulations in this sensitive area.

https://www.parliament.nz/resource/en-NZ/SCR_74759/4d68a2f2e98ef91d75c1a179fe6dd1ec1b66cd24

The Council of Europe Bioethics website at https://www.coe.int/en/web/bioethics/end-of-life has useful resources in relation to end of life choices in Europe and the 2003 euthanasia questionnaire answered by many countries in Europe is a useful summary (although starting to date, with reference to changes in the Netherlands and Belgium) https://rm.coe.int/16803a72c2.

This article was written by Valerie Thomas, on behalf of the Regulatory Institute, Brussels and Lisbon.

1 Council of Europe Guide on the decision-making process regarding medical treatment in end of life situations, see the brown text inside the box on page 8 at https://rm.coe.int/168039e8c5.

2 Ibid. page 7, second last paragraph.

3 Article 6 provides that ‘Every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life.

4 Article 6 states that ‘every child has the inherent right to life’.

5 Article 10 provides that ‘States Parties reaffirm that every human being has the inherent righ to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others’.

6 Members are elected for a term of four years by states parties in accordance with articles 28 to 39 of the Covenant. Members serve in their personal capacity and may be re-elected if nominated. As found at http://www.ohchr.org/EN/HRBodies/CCPR/Pages/Membership.aspx.

7 Members are elected for a term of four years by States parties in accordance with articles 28 to 39 of the Covenant. Members serve in their personal capacity and may be re-elected if nominated. As found at http://www.ohchr.org/EN/HRBodies/CCPR/Pages/Membership.aspx.

8 UN OHCR Draft General Comment on Article 6 of the International Covenant on Civil and Political Rights – Right to life found at http://www.ohchr.org/EN/HRBodies/CCPR/Pages/GC36-Article6Righttolife.aspx.

9 Ibid. Of the 23 submissions of states parties to general comment 36, 8 did not comment specifically about the inclusion of end of life choice in the right to life, 2 made general comments about the General Comment extending beyond current international law, 7 were either explicitly neutral or positive to the inclusions and 5 were against the inclusion. Egypt’s position could not be determined as the author was not able to read Arabic submission.

10 The HRC’s response to the Netherlands extension of its end of life regulations to include those born with severe illnesses, known as the Groningen Protocol, was an issue of concern (see here http://www.refworld.org/docid/3be1202a4.html). The Netherlands response to the HRC’s concerns can be found here www2.ohchr.org/english/bodies/hrc/docs/CCPR.C.NET.4.doc.

11 Pretty v UK 2002 (Application 2346/02) Eur. Ct. H.R. at https://www.unionedirittiumani.it/wp-content/uploads/2012/07/CASE-OF-PRETTY-v.-THE-UNITED-KINGDOM.pdf.

12 See Haas v. Switzerland on pages 1 and 2 of the European Court of Human Rights Factsheet – End of life and the ECHR found at www.echr.coe.int/Documents/FS_Euthanasia_ENG.pdf.

13 Note 10, Pretty paras. 61, 65, 76, 78, 82 and 83.

14 Information about the WMA found here https://www.wma.net/who-we-are/.

15 Declaration on euthanasia found at https://www.wma.net/policies-post/wma-declaration-on-euthanasia/.

16 The WMA published most of the powerpoint presentations of the speakers here https://www.wma.net/events-post/wma-european-region-meeting-on-end-of-life-questions/.

17 Good, short summaries of the broad framework for end of life regulations can be found in the table ‘Jurisdictions where voluntary euthanasia and/or assisted dying are currently in operation‘ completed by the Victorian Parliament Research Team here https://www.parliament.vic.gov.au/publications/research-papers/download/36-research-papers/13834-voluntary-assisted-dying-bill-2017#_ftn49 and the New Zealand Parliament Report of the Health Committee from page 26 here https://www.parliament.nz/resource/en-NZ/SCR_74759/4d68a2f2e98ef91d75c1a179fe6dd1ec1b66cd24.

18 Found at https://www.admin.ch/opc/fr/classified-compilation/19370083/index.html.

19 SAMS Guidelines on end of life care found at https://www.samw.ch/en/Ethics/Ethics-in-end-of-life-care.html.

20 Section 2, 127.805 §2.01. Who may initiate a written request for medication. Found at https://www.oregonlegislature.gov/bills_laws/ors/ors127.html.

21 Ibid. 127.810 §2.02. Form of the written request.

22 This is known as a conscientious objection and is contained in Section 4, 127.885 §4.01, Sub-section 4 of the DDA.

23Unofficial translation of the Dutch Criminal Code found at http://www.ejtn.eu/PageFiles/6533/2014%20seminars/Omsenie/WetboekvanStrafrecht_ENG_PV.pdf.

24Unofficial translation of the Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act found at http://www.patientsrightscouncil.org/site/wp-content/uploads/2012/05/Dutch_law_04_12.pdf. Official version of Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act (in Dutch) with all amendments found at http://wetten.overheid.nl/BWBR0012410/2014-02-15.

25de Jong, A. and van Dijk, G, Euthanasia in the Netherlands: balancing autonomy and compassion World Medical Journal, World Medical Association, Oct 2017, page 1, found at https://www.knmg.nl/actualiteit-opinie/nieuws/nieuwsbericht/euthanasia-in-the-netherlands.htm.

26The Dutch law could not be examined directly because the author does not know Dutch, however, the Dutch government has a comprehensive website in english about its end of life choices and the conditions under which people may request such end of life assistance, see here https://www.government.nl/topics/euthanasia and the article above Euthanasia in the Netherlands: balancing autonomy and compassion was also used.

27These evaluations can be found on the Dutch government website here https://www.rijksoverheid.nl/documenten/rapporten/2017/05/23/derde-evaluatie-wet-toetsing-levensbeeindiging-op-verzoek-en-hulp-bij-zelfdoding.

28Chapter II, Article 3, subsection 3.2 of the 28 MAI 2002. — Loi relative a` l’euthanasie found at https://www.health.belgium.be/sites/default/files/uploads/fields/fpshealth_theme_file/loi20020528mb_frnl.pdf.

29The Belgian law 28 FEVRIER 2014. — Loi modifiant la loi du 28 mai 2002 relative à l’euthanasie, en vue d’étendre l’euthanasie aux mineurs found here https://www.health.belgium.be/sites/default/files/uploads/fields/fpshealth_theme_file/loi20140228_frnl.pdf.

30Section 241 of the Canadian Criminal Code found at http://laws-lois.justice.gc.ca/eng/acts/C-46/page-54.html#docCont.

31Ibid.

32Section 9 (1)(d) of the Voluntary Dying Act 2017 (Vic) found at http://www.legislation.vic.gov.au/Domino/Web_Notes/LDMS/PubStatbook.nsf/f932b66241ecf1b7ca256e92000e23be/B320E209775D253CCA2581ED00114C60/$FILE/17-061aa%20authorised.pdf.

33Ibid. Section 9 (4).

34The Royal Dutch Medical Association (KNMG) established a network of independent, expert doctors known as SCEN physicians (SCEN: Support and Consultation on Euthanasia in the Netherlands). SCEN physicians are available for support, information and formal consultation found at https://www.knmg.nl/actualiteit-opinie/nieuws/nieuwsbericht/euthanasia-in-the-netherlands.htm.

35Hadeel Al-Alosi’s article ‘A Time to Fly and a Time to Die: Suicide Tourism and Assisted Dying in Australia Considered‘ looks into the growing phenomenon of Australian’s going to jurisdictions that permit assisted dying for the purpose of ending their life found at http://classic.austlii.edu.au/au/journals/UNSWLRS/2016/4.pdf.

36Information found at Dutch government website here https://www.government.nl/topics/euthanasia/euthanasia-and-newborn-infants.

37Ibid.

38Definition found at http://www.who.int/cancer/palliative/definition/en/.

39Ibid.

40Information found at Dutch government website here https://www.government.nl/topics/euthanasia/palliative-sedation-a-normal-medical-procedure.

41Inquiry details found here http://www.parliament.wa.gov.au/parliament/commit.nsf/($all)/702507C2CB8742824825818700247E53?opendocument.

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