Withholding of treatment of infants with disabilities.

Withholding of treatment of infants with disabilities

Summary

The ability to provide life support to ill children who, not long ago, would have died despite medicine’s best efforts challenges paediatricians and families to address profound moral questions. The society of today is divided about extending the life of some patients, especially newborns and older infants with severe disabilities. This report will look at previous cases of such episodes, and aim to discuss the areas of legal and ethical issues that surround them.

Introduction

Medicines can influence the way we live in a variety of ways. Some can be clear to understand, yet others may be more subtle, and difficult to understand. Medical advances have often raised moral and ethical issues. The problems posed are often complex, especially when considering what should be done or not done in respect of infants born with severe disabilities. The issue has been evident for many years, but it has also changed over the years. Selective non-treatment of newborns retains its unique features. It concerns human beings who are at the most vulnerable period of their lives, who cannot express their feelings. Although there are several methods available for the diagnosis of chromosomal, genetic and physical disorders of a foetus, many can go undetected for the full term of pregnancy. Had they been detected early on in the pregnancy, prophylactic termination would have certainly been discussed with both parents. Advances in neonatal medicine mean that infants born of low weight or with disabilities may now be saved, whereas some years ago they would certainly have died. The question that stems from this issue is that of ethics and law, and who has the authority to make the decision of withholding of treatments.

2. Evidence of treatment being with-held

In the past, doctors dealt with severe cases. Campbell and Duff (1979) believe that traditionally doctors have often made a decision for or against treatment, without any reference to parental views. These decisions, often well meant, had a mistaken belief that parents were spared an unbearable additional burden. The doctors dilemma is evident, do they maintain the life of an infant who will not be able to take an active part in society, or who will experience pain and suffering throughout life. Smith (1986, p.765) points out, “Although generally considered unlawful, non-treatment of disabled newborns is probably not a rare event”. Smith claims that results from one hospital study show that 14% of all infant deaths were closely related to withdrawal or withholding of medical treatment. Shapiro (1983) estimated that in United States approximately 30,000 severely defective babies are born each year. This occurs despite the sophisticated screening programmes. Once born, choices have been, and are, made about which should be treated and which not. These decisions may be based on a number of factors - personal, ethical or economic. The decisions are made despite the fact that there are treatments available, which would maintain life.

2. Examples of Court Cases

2.1 Case One

This is a preview of the whole essay

2. Examples of Court Cases

2.1 Case One

Mason and McCall Smith (1994) state that at the Court of Appeal in Re B, was a case concerning an infant suffering from Down’s Syndrome further complicated by intestinal obstruction of a type which would be fatal, but which was amenable to surgical treatment. Parents of child B took the view that the kindest thing in the interest of the child would be for her not to have the operation and for her to die. Judge Dunn LJ in passing described the decision as ‘an entirely responsible one’. Mason and McCall Smith (1994, p.150) state that the “Infant was made a ward of court and, in the face of judicial indecision and medical disagreement, the question ‘to treat or not to treat?’ came before the Court of Appeal”. A second judge, Templeman LJ, adhered to the general principles relating to the affairs of minors, believed that the judge Dunn LJ, who firstly dealt with the case, had been too much concerned with the wishes of the parents, when he had refused to authorise the operation. Templeman believed the duty of the court was to decide the matter in the interest of the child. His conclusion was that in the best interest of the child the treatment should be served. Although, Templeman LJ left room for manoeuvre in his decision, and said that with regards to other cases, the court may be forced to give another conclusion. The times when the infant has such severe and proved damage that its future is so certain, and also when the life of the child is going to be full of pain and suffering then the courts may see fit to rule differently.

2.2 Case Two

Kuhse and Singer (1985) report on a case where a boy was born with uncomplicated Down’s syndrome. The mother rejected the baby when told of his condition. Dr. Arthur, a senior consultant paediatrician examined the baby, after whom Dr. Arthur noted in the records that the boy’s parents did not wish him to survive, and that only nursing care was to follow. He also prescribed a strong narcotic painkiller to be administered every four hours, despite the fact that the baby showed no signs of being in any pain. Some sixty-nine hours later the baby died, and Dr. Arthur was charged with murder. Had he not been reported to the authorities the incident would have gone unnoticed.

During the course of the court case, Dr. Arthur’s murder charge was dropped to attempted murder, and after two hours of deliberating they returned with a verdict of ‘not guilty’. Kuhse and Singer (1985) state that an opinion poll conducted after the trial asked two thousand adults whether they thought a doctor should be found guilty of murder if, with the parents agreement, ‘he sees to it that a severely handicapped baby dies’. Despite the case being very sensitive in its nature, the results were very clear-cut: 86 per cent agreed that in these circumstances the doctor should not be found guilty of murder; and only 7 per cent said that he should.

2.3 Case Three

Kuhse and Singer (1985) also report on a case of ‘Baby Doe’. Baby Doe was born with Down’s syndrome, and an improperly developed oesophagus, which meant that feeding would be problematic, as food would get into the lungs when feeding. Two paediatricians recommended that ‘Baby Doe’ should have corrective surgery in a nearby hospital, which was equipped for such an operation. Alternatively the obstetrician and two other paediatricians recommended that the baby stay in the hospital to be nursed and free of pain. The options were presented to the parents, who decided to follow the recommendations of the obstetrician. Judge Baker ordered an immediate hearing, upon being informed by the management of the hospital. Judge Baker’s judgement was that the baby’s parents had the right to choose the appropriate course of treatment for their child. The prosecuting attorney tried to get the Supreme Court to overturn Baker’s decision but the Court upheld their decision. After five days Baby Doe died in his incubator, the cause of death: chemical pneumonia.

As a result of public outrage, the White House responded extremely quickly. The then Secretary for Health and Human Services, Richard Schweiker, was made to ensure that federal laws protecting the rights of disabled citizens was being adequately enforced. All who provided health care were informed that section 504 of the Rehabilitation Act of 1973 forbids recipients of federal funds to withdraw or withhold from disabled citizens.

The Legal rights of an infant

Mason and McCall Smith (1994) believe that a newly born baby has the same rights to self-ownership of the body as every other human being. Though, they see that the proposition is increasingly under attack in terms of intellectual development. As Tooley (1983) suggests that the term ‘person’ should be reserved for those who are capable to understand that they are a continuing selves, and have a desire to go on living. His belief stem from that of John Locke, a philosopher who defines a ‘person’ as, “A thinking intelligent being that has reason and reflection and can consider itself as itself, the same thinking thing, in different times and places” (Kuhse & Singer, 1985, p.132).

Mason and McCall Smith (1994) state that killing a child by omission could be prosecuted under the Children and Young Persons Act 1933. Although it is more likely to be charged as manslaughter, the paramount considerations being whether or not there is a duty of care and, if there is, what is the extent of that duty? It has become clear through the court battles over life support that the law does not directly imply what is right or what is wrong. Within these cases the judges are left to interpret the law, using past cases and their social reality to decide what to rule.

Recent Outcomes

As a direct result of Baby Doe’s case in America, Policies became more evident within hospitals as to how situations similar to this should be handled. Policy guidelines stipulated a more rigid plan of action, when such cases were reported and investigated. The policy highlighted the main authority figures for decision making during and after such allegations, and to ensure full consideration of moral, ethical, legal and medical issues. The policies were to be reviewed annually.

The British Medical Association confirmed also that guidelines in this area were needed. The BMA’s Medical Ethics Committee published guidelines with regards to “Withholding and withdrawing life-prolonging medical treatment: Guidance for decision-making” (). In part three of the document, it states that the same moral duties are owed to babies, children and young people as to adults. In that the graver the consequences of the decision, the commensurately greater the level of competence is required to take that decision. Those with a parental responsibility are morally and legally entitled to give or withhold consent to treatment. The decision they give will be determinative, unless it conflicts seriously with the interpretation of those providing care about the child’s best interest.

5. Conclusion

The ideal conclusion would be that of direct rights and wrongs. Unfortunately this area will suffer greatly for years to come, despite the guidelines, and court hearings. The issues and the surrounding area are so sensitive; they require adaptable guidelines so each case can be heard as an individual case. Our society is divided in its views of treatment withdrawal, and many views are strongly held. The important factor to remember is that of the infant/child, its needs are paramount.

Reference

Campbell & Duff, (1979) cited in McLean, S. (1999) p.115, “Old Law, New Medicine: Medical ethics and human rights” London. Rivers Oram Publishers.
Kuhse, H. Singer, P. (1985) p.132, “Should the baby live? The problem of handicapped infants.” England. Oxford University Press.
Kuhse, H. Singer, P. (1985) p.1-11, “Should the baby live? The problem of handicapped infants” England. Oxford University Press.
Kuhse, H. Singer, P. (1985) p.10, “Should the baby live? The problem of handicapped infants” England. Oxford University Press.
Kuhse, H. Singer, P. (1985) p.11-17, “Should the baby live? The problem of handicapped infants” England. Oxford University Press.
Mason, J. McCall Smith, R. (1994) p.149, “Law and Medical Ethics” [4th Ed] London. Butterworth Publishers.
Mason, J. McCall Smith, R. (1994) p.150, “Law and Medical Ethics” [4th Ed] London. Butterworth Publishers.
Mason, J. McCall Smith, R. (1994) p.150, “Law and Medical Ethics” [4th Ed] London. Butterworth Publishers.
Shapiro, (1983) cited in McLean, S. (1999) p.114, “Old Law, New Medicine: Medical ethics and human rights” London. Rivers Oram Publishers.
Smith, (1986) cited in McLean, S. (1999) p.113, “Old Law, New Medicine: Medical ethics and human rights” London. Rivers Oram Publishers.
Tooley, M. (1983) cited in Kuhse, H. Singer, P. (1985) p.132, “Should the baby live? The problem of handicapped infants” England. Oxford University Press.
“Withholding and withdrawing life-prolonging medical treatment: guidance for decision making” (online). Available from: (accessed 20/01/2003)