Disability Stereotypes, International Human Rights and the Groningen Protocol's Recommendations for Ending Infants' Lives.

James E. Wilkinson

Abstract

The Netherland's Groningen Protocol approves counseling parents of infants with potentially grave disabilities to end treatment of life-threatening conditions, even if with treatment, the infants will live, and in some cases, thrive. Similar practices are followed in the U.S., Britain and Belgium. This paper reviews the Protocol in light of the Convention on the Rights of Persons with Disabilities and the Convention on Rights of the Child. Counseling against treatment, sometimes called selective non-resuscitation, often is explicitly based on the child's disability and usually on stereotyped and often inaccurate views of the baby's future quality of life. Disability discrimination occurs when medical services change because of a patient's disability and when those recommendations are based on stereotype. Because the Conventions bar discrimination against disabled children, states who have adopted these international human rights standards are obligated to end such medical practices. Footnotes were deleted when posted to this blog. Contact author for details.

 

PART I.

 

INTRODUCTION

 

Pierre, a 30 year old psychotherapist and Mol, a teacher, were worried and excited as any first time parents. Then a doctor informed them that their daughter had serious problems – spina bifida and hydrocephalus. A cold clinical description followed. A black and white textbook photo of a misshapen baby had the feel of something out of Auschwitz. Hopeless. Immobile. Incapacitated. Not viable. Standard procedure is to forgo all treatment. Soon she will die and escape a life not worth living. To operate and save the baby was possible but it would be selfish egoism and prolong her suffering. Educated but dependent, devastated and trusting, Pierre and Mol fell into paralyzing passivity and accepted the recommendation for "no treatment" and waited for their baby to die.

 

But Liesje lived and more than three months later a new doctor inserted a shunt to relieve pressure on her brain, closed an opening in her spine. More serious operations followed. Liesje lived for 11 years, operated wheelchairs, played the piano, camped with a youth group, sang along with a Walkman, joked, advanced in school and lived a challenged and joyful life until an operation went badly and destroyed her brain.

 

Doctors and lawyers in the Netherlands have developed the Groningen Protocol to regulate the kind of counseling offered to parents like Liesje's and to justify recommendations that hasten the death of some newborns with severe impairments.
The Protocol originated with a review of treatment decisions that led to the deaths of more than twenty Dutch infants born with spina bifida. Some doctors in other countries make similar recommendations for selective resuscitation, but the Groningen Protocol most directly supports telling parents that their babies' impairments will result in a life not worth living, and should die. Stereotypes about the lives of people with disabilities often drive these recommendations.

 

This paper reviews the Groningen Protocol according to human rights principles, in particular how disability status and stereotypes lead to life-ending medical choices for some infants. This paper is about cases where with continued care, an infant is expected to live for years, and not when death is imminent. Because doctors usually counsel and seek consent from infants' parents before starting or ending a course of treatment, this is an examination of discrimination in medical counseling services.

 

The paper examines a key factor for Groningen Protocol and similar decision-making—the anticipated "quality of life" for an infant with impairments—and exposes two major problems. First, the Protocol directs physicians to discriminate based on the infant's disability. Second, predictions of a poor quality of life are not based on acceptable evidence but rather are rooted in implicit stereotyping. This results in disability discrimination and the unnecessary death of disabled newborns.

 

The analysis reviews the Groningen Protocol under the International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (CRPD) and, briefly, the U.N. Convention on the Rights of the Child (CRC) as well as defenses to the claim that the Protocol violates human rights standards.

 

 

 

The Human Rights Obligations of Medical Professionals and Families

 

This paper focuses on the obligations of medical providers under two international human rights regimes. I do not examine application of criminal law, professional licensing schemes, medical malpractice issues or civil child abuse prevention mechanisms that are relevant to the issues or means of implementing the human rights set out in international law. It is also worth noting that questions about the reach of human rights into the private zone of the family are being asked.

 

On whom do international human rights duties and liabilities fall? Human rights have progressed from a time when it focused largely on the actions of state actors to a point of recognition that individuals possess rights that require protection from abuse by non-state actors. Most recognize that the range of human rights extend deep into societies: from the duty of states to refrain from arbitrary punishment, to that of private firms to use equal opportunity in employment to the point that women should be safe from gender-driven domestic violence. Paragraph (w) of the Preamble of the CRPD states: "the individual, having duties to other individuals and to the community to which he or she belongs, is under a responsibility to strive for the promotion and observance of the rights recognized in the International Bill of Human Rights."

 

What are the limits of this reach into what is termed the private sphere? Does a donor violate a human rights norm in choosing to make contributions only though Jewish charities? Does a potential parent have the right to choose the race of a sperm donor when being artificially inseminated? Do parents and students in religious schools have the right to override a legislative prohibition on corporal punishment? Does a child have a claim against the state for allowing his stepfather to avoid child abuse prosecution by giving him a defense of "reasonable chastisement"? Would full implementation of the CRC require states to recognize human rights claims of children brought directly against their parents for abusive corporal punishment? Is it conceivable that someone might assert a civil rights claim against parents on behalf of a severely disabled newborn when the parents are considering withdrawal of life-preserving ventilation services?

 

This article examines the responsibility of the medical system to those infants and leaves for another day the question of whether parents' decisions about their babies best interests should be subjected to human rights enforcement mechanisms. It should be noted that the CRPD's approach to the problem of potential parental prejudice towards children with impairments features a provision that urges states to work through education and provision of support, to change individuals' practices that harm disabled children.

 

Part II.

 

THE PRACTICES DEFINED AND CHALLENGED

 

The Groningen Protocol was developed by Dutch medical and legal experts to regularize end -of-life and life-ending decisions concerning newborns with severe impairments. The Groningen Protocol has been accepted as a standard of proper practice by the Dutch Paediatrics Association. A report to the Netherlands' House of Representatives by State Secretary for Health, Welfare and Sport and the Minister of Justice demonstrated the Dutch government's support for the Protocol. The report endorsed "due care criteria a doctor would need to meet to avoid criminal prosecution for homicide for terminating the life of a seriously ill newborn child."
When it established an experts committee to assist legal review of such cases, the government said that infant deaths that followed the decision to end or withhold treatment are not subject to review, only deaths occurring as a result of "active measures" to end a life.

 

The Protocol, as summarized by its primary author, holds that it is medically and legally proper to take "life ending measures" - to withhold or withdraw treatment or even to give drugs to hasten the death of an infant, in these circumstances:

 

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.

 

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.

 

When following the Protocol, doctors must obtain an independent medical consultation, carefully document justification for their recommendation, including explicit consideration of alternatives, get informed consent from both parents, report to authorities and meet other criteria. One comment on the Protocol suggests that these due care criteria serve to guard against the abuse of people with disabilities by setting out such clear requirements. While there is much merit in the careful approach set out in the Protocol and it may actually prevent some objectionable outcomes, this article is concerned primarily with the content of criteria on which life and death decisions are made.

 

 

It is not only Dutch children with spina bifida who are at risk; many others, including premature babies, infants with Down Syndrome and others born with significant problems face the possibility of medical recommendations for ending treatment or injection of life-ending drugs. In Belgium, doctors reported

seventeen instances in one year where they gave drugs to kill severely impaired babies. The Wyatt case in Great Britain shows that doctors can obtain court approval to avoid treatment despite parental pleas, if they think the treatment may result in suffering with "no commensurate benefit" because of long-term disability.

 

A 2006 article in Pediatrics reports that at a Portland, Oregon hospital, one-third of neonatal intensive care unit staff would counsel "do not resuscitate" for 24-25 week gestation infants, up to 68% of whom would be expected to live, if resuscitated. This is justified because 45-60% of the survivors would have severe or moderate disabilities, and assumed to have a poor quality of life. However, up to 37% of the newborns were predicted to have minor or no disabilities.
Still non-resuscitation of all those infants was the recommendation of a significant portion of staff.

 

This has been an issue for many years. In 1989, the U.S. Civil Rights Commission issued a report, Medical Discrimination against Children with Disabilities, which included a long review of medical literature and other evidence of neonatal practices affecting infants with disabilities. It concluded that the practice of withholding treatment from infants with severe impairments was not uncommon in the U.S.

 

A. Ethics, Policy Debates and the Groningen Protocol

 

Ethical considerations relating to quality of life arguments are critically important in developing public policy and private practices in this field. Proponents of the practice believe they are justified by an obligation to end unbearable suffering and conclude that it is ethical to decide for another that "death would be more humane than continued life." ^{Lindemann's careful review of the controversies} concerning the Groningen Protocol concludes that life-ending recommendations and active measures to end a baby's life can be ethical, at least in the Dutch society, where disabled children are routinely offered decent medical care and on-going social support.

 

Justifications for such practices were criticized as early as Robertson's 1975 Stanford Law Review article and found wanting. Liesje's father, Pierre Mertens, has criticized the moral dimensions of this practice. Martha Field, writing in the Harvard Women's Law Journal identified a range of serious problems with killing the handicapped after birth. Field viewed the practice as disability discrimination and a form of eugenics.

 

Organizations representing people with impairments, including The International Federation for Spina Bifida and Hydrocephalus (IF) oppose the Protocol.
The Groningen Protocol has also been questioned in the Netherlands. In 2007, the Health Council of the Netherlands' Centre for Ethics and Health urged reexamination of key medical assumptions underlying the Protocol and government policy. The Centre questioned whether predictions of suffering and quality of life are reliable.

 

The IF and European Disability Forum resolutions and parents, in the cases of Wyatt in the U.K. and Johnson in the U.S., have raised human rights standards as a basis for opposing "no treatment" decisions for disabled newborns. Their demand for an end to disability discrimination in neonatal services is treated in detail in this paper.

PART III.

 

THE GRONINGEN PROTOCOL AND THE INTERNATIONAL CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES: MEDICAL DISCRIMINATION.

 

A. Key Provisions of the International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.

 

This Convention (CRPD), now being adopted by nations around the world, is intended to create a universal understanding of and approach to disability rights. The CRPD obligates states to adopt and enforce non-discrimination policies and to promote the rights and interests of people with disabilities. The CRPD sets out general principles as well as specifications regarding medical practices that should govern neonatal treatment of those facing severe disabilities.

 

Article 10 states:

 

States parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

 

This provision may be read to directly call on nations to end practices that result in people's loss of life because of disability but it is not the subject of detailed analysis here.

Principles set out in Article 3 include:

 

(a) Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons;

(b) Non-discrimination;

(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;

(e) Equality of opportunity; and

(h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

 

Among provisions of the CRPD relating to treatment of severely impaired newborns are:

 

Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others. (Article 17).

 

[P]ersons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. (Article 25).

 

Paragraph (b) of Article 25 obliges states to:

 

Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children....

 

Directly applicable is paragraph (f) of Article 25, which demands that states:

 

Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

 

This reinforces paragraph (d) of the same article which will oblige states to:

 

Require health professionals to provide care of the same quality to persons with disabilities as to others….

 

The Convention on the Rights of Persons with Disabilities requires states "to take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities"; and "to take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise..." Articles 4 (b) and (d).

 

The overall approach of the CRPD is thus to protect the fundamental rights of persons with disabilities, including life, to stop discrimination and to encourage a wide range of efforts to maximize their human potential. It mandates that states engage with persons, organizations and private enterprises to take affirmative steps to help people with disabilities to minimize and overcome the effects of impairments.

 

B. Discrimination Prohibited By the Convention on the Rights of Persons with Disabilities.

 

The Convention's Article 5 provides for equal protection of the law and non-discrimination:

 

1. States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.

2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds.

3. In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided.

4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention.

 

Discrimination is defined in Article 2 as:

any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination including denial of reasonable accommodation…

 

Article 25 (f) of the CRPD expressly bars direct discrimination including the "discriminatory denial of health care or health services ... on the basis of disability." The CRPD holds that failure to make reasonable accommodations necessary for a disabled person when needed to promote equality and eliminate discrimination is a form of discrimination. Articles 2 and 5 (3).

 

Another form of discrimination is indirect or disparate impact discrimination, such as a neutral rule that will have a predictably negative impact on a group of disabled persons, a concept developed in U.S. employment discrimination cases ^{but also recognized in European jurisprudence.} Without a strong justification for the rule including proof of legitimate goals that cannot be met with less-impacting means, such rules illegally discriminate. This kind of discrimination must be recognized and remedied in order to address practices that have "the effect of impairing…exercise…of all human rights…." as required by Article 2, as well as to effectuate Article 5's requirement for "de facto equality"
and "equal and effective legal protection against discrimination on all grounds"(emphasis added).

The CRPD sets as a fundamental purpose "to combat stereotypes, prejudices and harmful practices…." Article 8(1)(b). Actions that are based on stereotypes are illegal discrimination under Article 2. As the U.S. Supreme Court explained in a disability rights case:

Underlying much discrimination law is the notion that animus can lead to false and unjustified stereotypes, and vice versa. Of course, the line between animus and stereotype is often indistinct, and it is not always necessary to distinguish between them.

The Groningen Protocol is not a result of animus or hatred, but it is rooted in stereotype and leads to harmful practices.

 

C. Infants' Rights and Proxy Decisions.

 

Article 7 of the CRPD, "Children with Disabilities", requires parties

 

to
take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.

 

Article 7, paragraph 2 states: "[I]n all actions concerning children with disabilities, the best interests of the child shall be a primary consideration."

The CRPD recognizes that parents and the law both have a stake and endorses guardianship arrangements for substitute decision-making, so long as the measures:

 

are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests.

 

The CRPD seeks to assure that parents and families are assisted in providing care for children with disabilities. The Convention does not describe specific parental duties to their disabled children with respect to medical care. However, the legal regime governing participation of third parties – medical providers – in making and in carrying out these medical decisions – must take into account the child's human rights set out by the CRPD.

 

D. Counseling and Care Decisions at the End of Life

 

The CRPD does not define the beginning or the end of life. Some will argue that allowing medical personnel to stop medical care of a person with disabilities at any time before the final heartbeat would violate the CRPD's protections for life (Art. 10), integrity (Art. 17) and health (Art. 25). That stance is unlikely to be widely accepted in view of the value placed on a person's privacy and autonomy. A competent person's right to make end-of-life choices has been accepted in some nations to be consistent with the right to life principle.
The right of a person to make end-of-life medical decisions by requiring respect for both currently stated refusals to consent to treatment and for advance treatment directives is supported by Article 3's reference to autonomy and freedom to make personal choices and the informed consent perspective set out in Article 25(d). Finally, when a person has chosen to refuse medical treatment that prolongs the process of death, there is no "discriminatory denial of health care" the target of Article 25's prohibition, because the doctor is not recommending or stopping medical care "because of disability." Instead, the person has, exercising her autonomous right of integrity, decided that the death process should not be prolonged.

 

This is not possible for an infant. The CRPD's Article 12(4) recognizes the role of substitute decision-makers for persons lacking capacity. For infants there are circumstances where treatment is futile and may only briefly prolong life – the patient is both disabled and has no chance of survival. Counseling parents to halt or forgo treatment for these babies would not be disability discrimination if based on a solid belief that the life is likely to be very short. This is because the medical counseling would be based on a factor other than the child's disability status.

 

In the U.K.'s Wyatt case, judicial approval of a hospital's plan to refuse ventilation treatment was based on an extension of this reasoning – it is in the child's best interests to have an easy, as opposed to a difficult death. Hedley J. wrote in his fifth of a series of opinions denying the parents' plea for treatment: "no sensible view of life is complete without a view of how it ends and the aspiration for a good death is one which is deep within the human psyche." The appellate court affirmed the judge but rejected a view that withholding treatment was permissible only when life was thought to be intolerable. It directed use of a best interests balancing test for future decisions. In the Wyatt case, the doctors' recommendation for no treatment did not turn out to be an end of life decision because she has lived for years, as opposed to a few weeks or months.

 

At the same time, the law in Great Britain and the European Convention on Human Rights affords no right to a competent disabled adult with an intolerably poor and suffering life to obtain legal authorization for assisted suicide. The Court recognized that the person's rights to personal autonomy and integrity were effectively restricted by the operation of English law but that those restrictions were within the authority of the nation to protect an important public good. The major reason for rejecting the woman's plea for assistance in ending her life was the general public policy of protecting the weak and vulnerable from the threat of assisted suicide. It is curious that in the U.K. the most vulnerable infant with disabilities may die as a result of medical steps because others decide her life is worthless,

but that if she survives for twenty years and comes to her own decision that her life should end, she has no right to get the same "assistance."

 

E. Analysis of the Groningen Protocol under the International Convention on the Rights of Persons with Disabilities

 

To establish a case of direct disability discrimination, a complainant must show that a person with a disability is treated unfavorably by a party subject to the law in providing covered services, because of the person's disability.

 

    1. Severely Disabled Infants Are Protected by the CRPD.

 

The CRPD's own terms establish that infants are covered. Children's rights are given a special section (Article 7) in the CRPD. Infants subject to the Groningen Protocol are without doubt disabled as they have "long-term physical, mental, intellectual or sensory impairments which ... hinder their full and effective participation in society on an equal basis with others." Article 1.

 

Some make the argument that newborns with severe impairments are not persons entitled to the same ethical and legal status as mentally competent adults. As all newborns have cognitive limitations, it might be argued that no infant is entitled to recognition of "personhood." Such arguments have been made in ethical debates but with little success in law. In Vo v. France, the European Court of Human Rights refused to accord independent legal status to a fetus on the facts of that case but did not rule out the possibility that in some circumstances a viable fetus might have legal status. Any child who is not stillborn should pass that threshold. U.S. law now clearly defines any fetus born alive at any stage of development as a person, human being, child, and individual.

 

    2. Medical Institutions' Provision of Neonatal Services Are Covered by the CRPD

 

The CRPD requires national laws to forbid disability discrimination in the practices of medical staff and institutions treating newborns. The CRPD's ban on discriminatory denial of health care, Article 25 paragraphs (d) and (f), can only be implemented if states apply non-discrimination standards to those "person(s), organization(s) and private enterprise(s)"[ Article 4(e)] which provide health care

 

        a. Acceptance for Care and Medical Counseling

 

It is unlikely, but possible, that providers may altogether refuse to care for a severely disabled newborn. Article 25(d) of the CRPD requires equality of treatment and 25(f) bans "discriminatory denial of health care or health services or food and fluids on the basis of disability." Refusal to treat because of disability violates many of the CRPD's basic premises. This does not mean that all doctors are required to treat all patients in all circumstances.

 

It would also be discrimination to accept for treatment only those children who have minor or moderate disabilities. Article 4 of the CRPD directs states to forbid "discrimination of any kind" on the basis of disability. The CRPD's goals of protecting life, liberty, privacy, social integration and habilitation for all disabled persons would be perversely skewed if protections were reserved for only the 'deserving disabled", or if only those whose disabilities are less difficult, would benefit from equal treatment and equal access to medical care. In the U.S., discrimination based on severity of disability has been held to violate the ADA. Suggestions that the most extremely disabling and fatal conditions are a justification for giving some fetuses less protection under abortion funding restriction laws have been rejected in the U.S. In the U.K., a proposal that a less-developed conjoined twin should not be treated as a "legal" person when considering Solomonic medical choices was rejected. To combat stereotyping of people with disabilities, to eliminate their institutionalization and to strike at the full

range of discrimination, the CRPD"s bar on discrimination 'of any kind" can only be interpreted to forbid discrimination based on the severity of disability.

 

The counseling stage of doctor-patient relationships is critical. Indeed, much medical care consists entirely of counseling, whether through providing second opinions, psychotherapy or simple advice to stop smoking These services, as surely as provision of drugs or specialist referrals, must be delivered without discrimination on the basis of disability. This is of greatest import at a time when parents are in shock and poorly equipped to make decisions for their newborns.

 

    3. How Stereotypes Determine Life or Death for Viable Infants.

 

The Groningen Protocol creates parameters for medical counseling concerning severely disabled Dutch infants. The Protocol, as described by its main author, recommends ending treatment and taking active life-ending measures when the infants may "survive beyond the period of intensive care, [but] they have an extremely poor prognosis and a poor quality of life." It also supports ending the lives of

 

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.

 

There are two ways in which discrimination occurs in this counseling. First, the Protocol's quality of life assessment expressly uses disability status as a deciding factor for whether or not a baby should live or die. Second, quality of life assessment is error-ridden and reflects negative stereotypes about the value of life with disabilities. Similar problems are evident in guidelines used elsewhere.

 

    a. Neonatologists' Guidelines Specify Direct Discrimination Based on Disability

 

The Groningen Protocol sets out factors which, if one or more are expected to be severe, predict a quality of life that is worse than death and justify medical actions to terminate the infant's life. These are described by Verhagen as:

 

• functional disability,
  
• pain, discomfort,
  
• poor prognosis, and hopelessness,
  
• lack of self-sufficiency,
  
• inability to communicate,
  
• hospital dependency and
  
• long life expectancy.
  

 

These factors are explicit or implicit predictions of the infant's disability. The phrase "functional disability" is most explicit. "Lack of self-sufficiency", "inability to communicate" and "hospital dependency" all describe functional disability. Pain and discomfort are symptoms that may have the effect of restricting activities. The "poor prognosis, and hopelessness" factors are cumulative judgments rather than separate analytical items.

 

Similarly, the Portland, Oregon hospital's guidelines for counseling parents of extremely premature infants are primarily based on two factors: mortality and "long-term neurodevelopmental outcomes", with lesser emphasis on potential chronic illness. As with the Groningen Protocol, the hospital's "long-term neurodevelopmental" outcomes factor makes the decisions turn on infants' anticipated disabilities.

 

Singh's article shows that "viability, futility and quality of life" were the major drivers in many doctors' decision-making for very premature infants. Singh shows that even predictions about fundamental viability are fraught with error for these infants and, as discussed below, the error rate only climbs when predicting quality of life.

 

Likewise, the American Academy of Pediatricians sees a need for guidelines for "selective resuscitation" only when the infant will live but with a "bad outcome." The bad outcomes are neurodevelopmental problems. The critical factor in whether to even consider not resuscitating is the infant's predicted disability. Parents whose 'normal" baby needs temporary help to breathe, would surely be counseled to approve ventilation, but not parents of a baby with severe disabilities.

 

The American Academy of Pediatrics' Committee on the Fetus and Newborn
, notes a professional debate about whether counseling in these circumstances should be a neutral presentation of facts, or directives like that in Kaempf's descriptions of practices in the Oregon hospital.
Even when medical staff feel that they offer neutral counseling, many parents who have end-of-life decisions for premature infants perceived they had no choice in the matter. Recognizing the vulnerability of parents in these dire circumstances makes it all the more important to understand how the content and preferences in medical counseling is likely to determine the life or death outcome for the baby.

 

When negative medical recommendations are based on an explicit assessment of the infant's projected disability, she has been directly discriminated against, in violation of the principles established in Article 5(2) of the CRPD.

 

    b. Considering Quality of Life - Stereotypes and Poor Predictions

 

Even setting aside direct discrimination based on disability per se, an implicit form of disability discrimination infects these practices. The protocols lack sound foundations in either medicine or disabled people's lives. The practices fail to guard against conflicts of interest and invite stereotypes to determine these life and death matters. Quality of life predictions involve value judgments that invite stereotyping. The Groningen Protocol contains a negative value judgment that persons with severe disabilities have a poor quality of life – so poor that others are entitled to decide that they should die. Refusing to counsel for life sustaining-treatment because of perceived negative quality of life predictions is disability discrimination.

 

The Groningen authors' statement that ."..a child with the most serious form of spina bifida will have an extremely poor quality of life...." may not be true for all children with severe spina bifida, especially if quality is judged by persons other than doctors. The Oregon neonatal practices for very premature babies are driven by unproven predictions of viability, futility and quality of life. The Academy of Pediatrics Guidelines on treatment of newborns with low birth weights cautions:

 

Obstetricians and neonatologists tend to overestimate morbidity and mortality rates for extremely preterm infants, which leads to underutilization of proven therapies, creating a self-fulfilling prophecy. In addition, neonatal nurses and neonatologists generally view disabilities in surviving infants more negatively than do parents of surviving infants or the children themselves as adolescents.

 

Albersheim states that the predictions relating to survival and disability are aggregate and statistical in nature and are of little value in predicting the outcome for any single newborn. Singh notes that studies have shown that neonatologists' on-the-spot assessments of infants conditions (Apgar scores, heart rates, visual inspections) have virtually no ability to predict life and death and disability outcomes for individual infants "in the gray zone" of 23 to 24 week gestation and 500-600 gram birth weights.

 

Medical literature contains additional evidence that "prejudices can interfere with end-of-life decisions...." Bellieni collects studies that show that physicians are influenced by a negative view of life with disability – one study showed that in 8 of 10 European countries, doctors thought that life is not worth living with a severe disability. In some cases, the negative assessments seem even more strongly related to the age of the patient, with newborns being "systemically devalued..."as compared to older patients.

 

A statement or belief which assigns to all persons in a group an attribute of some members of their group is a stereotype. Actions, including treatment recommendations that are based on such stereotypes, are tainted by discrimination. Judgments that life with paralysis is of inherently low quality and worthless are based on those stereotypes. That value judgment may lead to a discriminatory recommendation to end treatment or even to inject a medication to stop the baby's heart.

        

        1. Can Medicine Predict Quality of Life Without Stereotyping?

 

Quality of life is neither susceptible to a single definition nor to reliable prediction.

 

In recent years, an increasing number of studies on the quality of life of adults and children have been published, mostly describing outcomes of various medical

conditions. Yet, despite the wide interest, there is no universal consensus even on the very definition of what constitutes quality of life, particularly for children.

 

The Groningen Protocol is controversial among doctors, in part because of its assessment of quality of life or suffering. One wrote:

 

neonatal euthanasia cannot be supported, primarily because physicians and parents can never accurately assess the suffering of children.... without the testament of the patient herself as to the nature and magnitude of her suffering, physicians can never accurately weigh the benefits and burdens of a child's life, and therefore any such system would condemn to death some children whose suffering is not unbearable.

 

The concept of "suffering" is not rigorously defined and cannot be reliably predicted. Dr. de Jong reviewed the evidence and concluded that infants with severe spina bifida did not necessarily suffer from pain. While children and adults with spina bifida suffer from pain and discomfort related to their conditions, they do not experience unbearable and hopeless suffering as asserted by the authors of the Protocol. Dr. de Jong also relates studies showing the falsity of the Groningen Protocol's authors' highly negative predictions about children with severe spina bifida (or other severe disabilities).

 

In a study cited by the Health Council of the Netherlands, for half of a group of spina bifida patients there was a large discrepancy between the negative medical prognoses made during the patients' infancy and parents' description of disability of four to eighteen year old children.

 

            2. Quality Judged By Those Who Live It

 

Quality of life is best assessed by persons who are living it or are intimately bound up with their lives. In fact, self-assessed quality of life of people with disabilities is often as high as the quality of life of people without disabilities. One study concludes that spina bifida is not a very important determinant of life satisfaction.

 

Patients' self-assessments often exceed the quality of life predicted for them. A U.S. study stated: "We conclude that pediatricians overestimate the negative effects while also underestimating the positive effects of the disability (spina bifida) on the family." A study of spina bifida patients showed that teens with lower levels of physical problems felt higher degrees of psychological distress, contrary to the expectations of investigators.

 

In a study of young adults who had been extremely low birth-weight (ELBW) infants, Canadian authors were surprised to find:

 

The positive valuation of (health-related quality of life) by a significant majority of ELBW respondents is in accord with their successful transition to adulthood, in terms of educational status, employment, living independently, marrying, and having a family. Concerns that formerly preterm subjects would experience diminished quality of social engagement, interpersonal competence, and life satisfaction also were not borne out in our study.

 

The incidence of psychological distress among young adults with spina bifida is higher than in the population at large, but the likelihood of reduced distress correlates with having a positive attitude towards spina bifida and having positive family functioning. Another report says that families with a child with spina bifida are less affected by the medical condition than are families who have a child with epilepsy or asthma.

 

            3. Environment and Social Context Are Critical

 

If it is possible to meaningfully discuss quality of life, it must be placed in context. To what extent are life differences based on the disabling impairments or on external factors? As the CRPD emphasizes in paragraph (e) of the preamble:

disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others....

 

The social responses to impairments are critical to making life as good as possible for persons with severe disabilities. According to one study: ."..families of youth with spina bifida are not as responsive to the developmental changes of adolescence as are comparison families."
These findings are significant for the environmental impact; not only did parents of children with spina bifida respond less effectively to developmental changes, but lower socio-economic status families did worse - and boys and girls experienced different kinds of distress.

 

According to Dr. Sandler at the University of North Carolina, repeated studies show that:

 

employability and independence are not determined by… IQ score or the level of spina bifida. Among the most powerful influences on these long-term outcomes is the individual's sense of self.

 

While there may be a good chance of predicting the extent of paralysis of a person's legs, successfully predicting the future social environment and a person's degree of self-awareness, confidence and other influential factors, is impossible.

 

            4. Third Party Considerations May Intrude

These discussions occur when parents are burdened by tremendous stress. Their judgments are properly concerned with both the interests of their newborn and of their family as a whole. While a physician should not ignore the family's needs, the human rights perspective of the CRPD requires that proxy decisions be "free of conflict of interest and undue influence … proportional and tailored to the person's circumstances...." Compliance with this goal involves delicate attention to the entire context, but can only be achieved by giving primary consideration to the infant's most basic interest. An extraordinary example of this problem is reported and criticized by authors of the Groningen Protocol in their Pediatrics article. They criticize instances of administration of neuromuscular blocking drugs after removal of a respirator when done because parents' discomfort (and others) experienced when observing the infant gasping for breath. The drug, in the process of ending gasping and killing the baby, may obscure other symptoms of infant distress, thus adding to the infant's suffering. In these circumstances, third parties' psychological comfort took precedence over the infant's needs and rights.

 

The Groningen Protocol effectively directs doctors to discriminate in treatment recommendations on the basis of expected disability. Studies show the inaccuracy of quality of life assessments and the openings those inaccuracies create for stereotyping. Even if doctors could predict the long term medical or quality of life outcomes for newborns with 100% accuracy, the resulting negative value judgment inherent in a recommendation to allow or help the baby to die reflects a prejudice, even if not originating in hatred, against those who have severe disabilities.

 

 

PART IV.

 

Convention on Rights of the Child (CRC)

 

The twenty year old international CRC has been adopted by nearly all nations. Article 6 affirmatively states:

 

1. States Parties recognize that every child has the inherent right to life.

2. States Parties shall ensure to the maximum extent possible the survival and development of the child.

Article 2 parts (1) and (2) requires states to protect children without regard to their disability and to protect them from discrimination because of disability.

 

Article 19 directs that:

States Parties shall take … measures to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation … while in the care of parent(s), legal guardian(s) or any other person who has the care of the child.

 

Medical providers assume care for children in neonatal clinics.

Article 23 is most applicable to the Groningen Protocol:

 

1. States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community.

2. States Parties recognize the right of the disabled child to special care….

 

It continues in paragraph 3 to oblige states to give:

assistance … designed to ensure that the disabled child has effective access to and receives ... health care services, rehabilitation services... in a manner conducive to the child's achieving the fullest possible ... individual development....

 

Article 24 provides that states should promote "the right of the child to the enjoyment of the highest attainable standard of health...."

Compliance with the CRC's Articles 2 (nondiscrimination based on disability), 3 (best interest), 6 (life), 19 (maltreatment), 23 (health) and 24 (highest attainable health) are each called into question if states fail to address medical protocols that lead to ending the life of viable children.

 

In 2006, the U.N. Committee on the Rights of the Child published its General Comment No. 9 on the Rights of Children with Disabilities. Paragraph 31 of the Comment provides the Committee's perspective on infanticide, to which it may be argued, the Protocol and similar practices are in some ways equivalent:

 

The inherent right to life, survival and development is a right that warrants particular attention where children with disabilities are concerned. In many countries of the world children with disabilities are subject to a variety of practices that completely or partially compromise this right. In addition to being more vulnerable to infanticide, some cultures view a child with any form of disability as a bad omen that may "tarnish the family pedigree" and, accordingly, a certain designated individual from the community systematically kills children with disabilities. These crimes often go unpunished or perpetrators receive reduced sentences. States parties are urged to undertake all the necessary measures required to put an end to these practices, including raising public awareness, setting up appropriate legislation and enforcing laws that ensure appropriate punishment to all those who directly or indirectly violate the right to life, survival and development of children with disabilities.

 

The CRC recognizes that parents play a key role in protecting children's rights.

 

The application of the CRC to the Groningen Protocol is not further addressed here, but the similarity between the principles contained in the CRC and those in the CRPD should lead to the same conclusions.

 

V. Defenses and Objections to Legal Review

 

    A. National Reservations

 

International human rights instruments permit signatories to issue declarations to reserve for national decision-making issues that might otherwise be covered by the CRPD. For example: "The Kingdom of the Netherlands acknowledges that unborn human life is worthy of protection. The Kingdom interprets the scope of Article 10 to the effect that such protection - and thereby the term 'human being' - is a matter for national legislation."
This reservation is aimed at preserving abortion rights as a national competency; one can also imagine a reservation that seeks to keep national options open for perinatal counseling and decisions.

 

Such reservations, if not incompatible with the purpose of the convention, will limit the impact of formal proceedings because, ratification subject to reservations, by the CRPD's terms, limit enforcement. A related legal concept found in European Union law, is the reservation of certain issues for national competencies. In the health area, standards for allowance of different healing practices may vary between Poland and Iceland. It is possible that on issues such as euthanasia of disabled adults or treatment of very ill newborns, such national competencies will be asserted to avoid international scrutiny. Even if reservations are asserted, the principles addressed here may be raised in public debate, if not formal proceedings.

 

        B. Valid Medical Judgment, Not Discrimination

 

The second major challenge is the reluctance of legal institutions to challenge medical judgments using human rights standards. The outcomes in litigation touching on these issues in the U.S. illustrate the careful lines that must be observed to have human rights standards brought to bear on medical practices.

 

In Bowen v. A.H.A., The U.S. Supreme Court rejected an attempt to use nondiscrimination rules to oversee neonatal treatment decisions. The opinion cast doubt on whether Congress' ban on discrimination in federally funded programs in Section 504 of the Rehabilitation Act of 1973 (29 U.S.C. § 794) authorized regulations establishing investigations of discrimination in treatment of infants with severe impairments. The decision primarily faulted a failure to build a convincing record of facts and logic to support the regulations, especially in having never identified any cases where doctors had refused to treat despite the request of parents for medical care. (Without express consent, doctors are generally barred from treating a patient and, it was held, could not discriminate in treatment if treatment was barred by parents.)

 

This case did not charge a medical provider with disability discrimination, so the question of the reach of the law (as opposed to the regulations) was not answered. The plurality opinion suggested that discrimination could happen in the neonatal ward: "504 would be violated only if the hospital failed to report [to the state] medical neglect of a handicapped infant when it would report such neglect of a similarly situated nonhandicapped infant."

 

The opinion acknowledged the potential for discriminatory treatment, for example if babies were given blood transfusions despite parental religious objection but babies needing correction of disabling conditions were not treated because of similar parental objection. The opinion did not decide whether those babies were "similarly situated" or whether hospitals could legitimately distinguish between the two situations.

 

But overt, disability-based differences in actions taken by a U.S. hospital, now subjects it to liability. Medical decisions have been reviewed for disability discrimination under both Section 504 and the Americans with Disabilities Act.

 

U.S. courts are careful to distinguish malpractice claims from discrimination claims. As one court stated:

 

…a patient may challenge her doctor's decision to refer her elsewhere by showing the decision to be devoid of any reasonable medical support. This is not to say, however, that the Rehabilitation Act prohibits unreasonable medical decisions as such. Rather, the point of considering a medical decision's reasonableness in this context is to determine whether the decision was unreasonable in a way that reveals it to be discriminatory. … plaintiff's showing of medical unreasonableness must be framed within some larger theory of disability discrimination. … a plaintiff may argue that her physician's decision was so unreasonable - in the sense of being arbitrary and capricious - as to imply that it was pretext for some discriminatory motive, such as animus, fear, or "apathetic attitudes." (citations omitted). Or, instead of arguing pretext, a plaintiff may argue that her physician's decision was discriminatory on its face, because it rested on stereotypes of the disabled rather than an individualized inquiry into the patient's condition-and hence was "unreasonable" in that sense.

 

This case showed one court finding a middle ground between giving doctors total deference and requiring a full review of the diligence of professional services and ruled that the patient was unable to succeed in her claim unless she could show the medical practice to be devoid of any reasonable medical support.

 

An example of a hospital's refusal to treat a disabled infant being analyzed as discrimination is the Baby K case. While not the basis for judgment on appeal, the lower court decided that the hospital was not allowed to refuse to treat a severely disabled infant despite his extremely poor prognosis. The Court found that to do so would constitute disability discrimination.

 

[T]he plain language of the ADA does not permit the denial of ventilator services that would keep alive an anencephalic baby when those life-saving services would otherwise be provided to a baby without disabilities at the parent's request. The Hospital's reasoning would lead to the denial of medical services to anencephalic babies as a class of disabled individuals. Such discrimination against a vulnerable population class is exactly what the American with Disabilities Act was enacted to prohibit.

 

Another source of reluctance is the argument that "no treatment" recommendations are made in the course of "rational medical practices." In the absence of an express grant of such a defense, a defendant may generally not assert a "reasonable justification" to support a statutorily-banned discriminatory practice. The U.S. Supreme Court rejected a defense of rational business justifications in City of L. A., Dep't of Water & Power v. Manhart and held that increased business costs could not be used as a justification for a facially discriminatory policy that women should make larger contributions to pension funds than male employees because women typically live longer. Even benign motivations such as fetal health concerns do not justify overt gender discrimination in job assignments in the face of a statutory bar: "explicit facial discrimination does not depend on why the employer discriminates, but rather on the explicit terms
of the discrimination." concluded the Court in Int'l Union v. Johnson Controls. Where direct discrimination for reasonable and objective reasons can be legally justified, the statutes expressly establish these as affirmative defenses.

 

The European Union permits consideration of competing goals in limited circumstances. As the European Count of Human Rights stated in case alleging discrimination against Roma students:

 

a difference in treatment is discriminatory if "it has no objective and reasonable justification", that is, if it does not pursue a "legitimate aim" or if there is not a "reasonable relationship of proportionality" between the means employed and the aim sought to be realised (citations omitted). Where the difference in treatment is based on race, colour or ethnic origin, the notion of objective and reasonable justification must be interpreted as strictly as possible.

 

It would be a mistake to state that European law approves discrimination if it is based on "objective and reasonable justifications." The D.H. Court stated that it was appropriate when necessary to correct factual inequality. Further, such defenses should be limited to cases where there is an allegation of unintended disparate impact, rather than intentional prejudice. Like the U.S., the E.U. has expressly established a narrow range for justified discrimination in the employment field:

In very limited circumstances, a difference of treatment may be justified where a characteristic related to religion or belief, disability, age or sexual orientation constitutes a genuine and determining occupational requirement, when the objective is legitimate and the requirement is proportionate.

 

Whether the "objective and reasonable" objective defense will be imported into interpretation of the CRPD is yet to be determined.

 

A related concept is an affirmative defense where the CRPD would generally require a reasonable accommodation. In some circumstances, expensive accommodations for persons with disabilities may be unreasonable and not mandated by the Convention. But at no place does the CRPD state that direct discrimination is authorized because of seeming rationality. Finally, this article's detailed discussions of stereotype and inaccurate assumptions concerning the quality of life with disabilities shows that, if ever found applicable, the "objective and reasonable" objectives defense cannot be successful because the justifications are neither objective nor reasonable.

 

Courts and other tribunals may not be eager to use human rights standards to review the practices of hospitals and doctors. Hence, plaintiffs would be likely to succeed using evidence that shows stereotype, animus, ignorance or other indications of discrimination.

 

        C. No Discrimination if No Comparable Patient

 

Another potential problem relates to the usual search for a similarly situated non-disabled person, who was treated more favorably, in order to win a discrimination case. Justice White's dissent in Bowen related this view:

 

refusing treatment that is called for only because of the handicapping condition cannot constitute discrimination on the basis of handicap since there will be no similarly situated nonhandicapped newborn, i.e., one who needs the same treatment....

 

This argument relates to the requirements under Section 504 of the Rehabilitation Act of 1973, (but not the ADA) that a successful plaintiff be "otherwise qualified" for treatment and that the treatment decision turned "solely" on the basis of "handicap." Some courts interpret these provisions of Section 504 to exclude claims by disabled persons when the medical treatment decisions being litigated were triggered by the disability. It was one reason for the rejection of discrimination claims of families who complained of "no treatment" recommendations for their infants' spina bifida at the University of Oklahoma.

 

The CRPD contains neither of the limiting terms "solely" or "otherwise qualified." In this, it is closer to the ADA than to Section 504. The U.S. Supreme Court rejected the objection of the failure to show a better treated non-disabled group in its Olmstead decision. The Court ruled that developmentally disabled adults with mental health problems were as entitled to community-based programming as were those without mental illness, despite the fact that mental illness did make them different and that all of those being considered for the programming were disabled.

 

Justice Thomas' dissent criticized the ruling: "it looks merely to an individual in isolation, without comparing him to otherwise similarly situated persons...." The majority rejected this, reasoning that the ADA sought to strike at the entire spectrum of disparate treatment on the basis of disability. No non-disabled comparison group was necessary for the analysis under the ADA.

 

While not addressed in Olmstead, another answer is that in a case of overt discrimination, e.g. a written policy establishing different treatment based on protected class status, there is no need to do comparative analysis; the violation is proven by the words and actions that resulted in harm. In Johnson Controls, an employment discrimination case, the U.S. Supreme Court held that a company could not bar women from certain jobs because "the evidence shows "treatment of a person in a manner which but for" that person's sex would be different." In Olmstead, the plaintiff was treated in a manner which, but for her mental illness, would have been different, hence she suffered discrimination.

 

This potential objection is also answered by the CRPD's pledge to "take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities"; and to "take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise...." Articles 4 (b) and (d). Further, Article 26 provides that states

shall take effective and appropriate measures ... to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.

 

Counseling that excludes life-sustaining treatment options for a severely disabled newborn, because of her disabilities, will surely stand in the way of attaining maximum independence, abilities and participation in life.

 

        E. Best Interests

 

A final and most compelling defense against a claim that the Protocol and similar practices illegally discriminate is that the overriding principle in all such decisions is the child's best interests. In cases of lasting intolerable suffering, some argue, it is in the infant's best interests that suffering be ended through death. Britain's courts, in the Wyatt case and its experts on the Nuffield Council on Bioethics suggest that this is the standard for decisions. This is a serious argument and its validity is inherent in this article's acceptance of the idea that it is legal and moral to withdraw treatment when the effect is on the timing of an infant's imminent death. Drawing the line between life and death, in the case of brain death due to trauma or anencephaly (lack of brain), also involves both scientific questions and a best interests value judgment. Indeed, Article 3 of the CRC emphasizes best interests and Article 7(2) of the CRPD highlights best interests as being the "primary consideration" with respect to children with disabilities.

 

If not carefully analyzed, medicine's use of best interests arguments could swallow the whole set of non-discrimination principles set out by both Conventions. There are two ways to insure that this does not happen. First is to read the CRPD and the CRC to establish substantive standards for deciding the best interests of disabled children. For example, the bar on medical providers' "discriminatory denial of health care… on the basis of disability" in CRPD 25(f) is a fundamental statement of a best interest standard. That principle should not be negated by privileging a medical opinion that the viable infant's life will be worthless and too full of suffering to continue. In other words, the abstract best interest standard must be informed and limited by the specific rights and obligations set out in the CRC and CRPD. In the earlier discussion of the predictions of quality of life criteria, we have shown that application of those factors cannot be made without both stereotyping and often inaccurate negative assessments of the value of life with disabilities.

 

A second limitation is to understand that the best interest standard, especially if focused on a matter so fundamental as life and death, is rooted in morality, ethics and law and is not in this context, a medical concept. It is not a "best medical interest" decision, such as whether to prescribe one or another antibiotic for a child. The best interest assessment takes into account conflicting legal obligations, a community's moral views and other standards, surely informed by medical factors. However, decisions about children's best interests are reserved to parents, or when parents fail, to the courts. Principles of patient autonomy and informed consent, including circumstance when parents must act as proxy, give them the burden and power to determine "best interests." No provision of the CRPD gives physicians any authority to overrule these powers of autonomy and consent.

 

Given the genesis of the best interest standard and its diverse considerations, it is not appropriate to give medical providers the power to decide that disabilities may be so severe that the "best interests" of the child is to die. This remains the province of parents after they have obtained thorough advice from doctors, family, friends and spiritual advisors. Instead the CRPD and the CRC impose on medical providers two duties: to avoid discrimination and maximize the life possibilities of children with impairments.

 

CONCLUSION

 

Human rights laws are often aimed at creating a level playing field where individuals are no longer burdened by prejudice. The CRPD aims to end such prejudice such as the views that lives with disabilities are worthless. But the CRPD goes beyond the level pitch concept and establishes a series of policies that seek to create smoother paths for successful lives for people with disabilities. These policies are intentionally and explicitly established to favor affirmative actions to promote treatment, accommodation and integration. These start at the latest, when the child is born. States, institutions and neonatologists all bear a responsibility to set and follow practices that tilt in favor of treatment, accommodation and integration. This means favoring treatment options that promote life and development while avoiding stereotypes and the use of disability as a negative factor in medical counseling.

 

When another Liesje is born this year, what policies do the CRPD and CRC suggest in order to protect her "right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability?" These policies should take the form of counseling by a multi-disciplinary team that includes rehabilitation specialists who should talk hopefully and realistically with her parents about Liesje's medical, social and life prospects. This would include discussion of both the pain and burdens and love and joys that their family will experience. The counseling should make clear that the choice of treatment is the parents'. If there is no chance of survival, there is no reason to offer futile treatment; but parents should also know how the state defines medical neglect and what the hospital's obligations are if they observe unjust refusal to allow treatment.

 

They need to be told that the prospects are uncertain but that their daughter is a human being that they will love. They should be counseled that both legal and institutional policies favor giving all children the medical care that is needed to fulfill the promise of life and development.

 

This can be the first stage of ensuring for her life fulfillment of the promise made by the CRPD, to recognize the

 

existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society….