Critically Impaired Infants and End of Life Decision Making

Resource Allocation and Difficult Decisions

Neera Bhatia

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781317573555
• Edition: 1
• Topic: Derecho
• Subtopic: Derecho médico

Decisions to withdraw or withhold life-sustaining treatment are contentious, andoffer difficult moral dilemmas to both medical practitioners and the judiciary. This issue is exacerbated when the patient is unable to exercise autonomy and is entirely dependent on the will of others.

This book focuses on the legal and ethical complexities surrounding end of life decisions for critically impaired and extremely premature infants. Neera Bhatia explores decisions to withdraw or withhold life-sustaining treatment from critically impaired infants and addresses the controversial question, which lives are too expensive to treat? Bringing to bear such key issues as clinical guidance, public awareness, and resource allocation, the book provides a rational approach to end of life decision making, where decisions to withdraw or withhold treatment may trump other competing interests.

The book will be of great interest and use to scholars and students of bioethics, medical law, and medical practitioners.

1
Introduction

1.1 Medicine, technology and the law

During their lifespan, most human beings will require the intervention of medicine and possible care. In comparison with other areas of law, medical law profoundly affects people throughout their lives, from the period of pre-conception through to organ donation and the possible withdrawal or withholding of treatment at the end of life.¹

Medical law is an area of research, practice and, increasingly, litigation. Over the past three decades, it has been the topic of considered and intense academic and legal discussion.² During the course of its development, issues that have required medical, ethical and legal debate have become increasingly complex, and topics that were once considered almost science fiction have now become a reality.³ The rapid advancement of medicine has brought these issues to the fore, correspondingly increasing the public’s expectations of medicine, in terms of both the simple treatment and management of illness, and the hope for a complete cure of illness.

Advancements in medical technology and research require a parallel development of the law governing ethics, policies and regulation of medical issues. In Australia and the United Kingdom, matters relating to issues such as human fertilisation and embryology, abortion and human tissue have been legislated. However, there continue to be areas governed under medical law that remain largely unlegislated.⁴

The traditional, conservative foundations of the law and its retrospective nature have observed the development of a widening gulf between the realised and possible achievements of medical science and any corresponding legislation. Put simply, the law has been unable to keep up and, consequently, medical law, while attempting to accommodate developments in medical science, remains an area with little statutory intervention, dominated largely by case law.

Evidence of this lag can be found in the seminal English case of Airedale NHS Trust v Bland, in which Lord Mustill poignantly recognised:

[T]he law has been left behind by the rapid advances of medical technology. By starting with a clean slate the law would be freed from the piecemeal expedients to which courts throughout the common law world have been driven when trying to fill the gap between old law and new medicine.⁵

1.2 Concepts of life and death and the law

Western society, at least, has observed a shift from divinity to secularity in relation to the contemplation and understanding of concepts of life and death.⁶ Once considered to be beyond human control and the preserve of religious leaders, matters of life and death have increasingly become the topic of regular discourse in hospitals and courtrooms as well as in less formal settings, such as talkback radio and internet blogs.⁷ Issues surrounding life and death, such as the withdrawal or withholding of life-sustaining treatment, are often discussed in the public arena with individuals and those closely involved and affected by such decisions expressing strong and often divergent opinions.⁸

It is understandable that such issues and the ethical dilemmas they present arouse significant public interest. The finality and irreversibility of life and death decisions, such as the withdrawal or withholding of life-sustaining treatment, are of ultimate importance. It is critical that the law facilitates and guides these decisions in the most appropriate moral and ethical context. While moral, ethical, religious and sociological issues tend to dominate decisions of this kind, individual notions of rights, entitlements and personal autonomy have become a significant feature of western society and, consequently, have also influenced the development of medical ethics and law.

The recognition of a right to life and protection from harm is one of the main ideals in a civilised society, and thus it has the protection of law.⁹ As appropriate, the law will intervene when called upon in life and death situations. However, in many of these instances, the very right demanded is the right to die – a right that is not expressly endorsed by law in Australia or the UK.

Both medical practitioners and the judiciary are placed in a difficult moral dilemma when deciding the legal permissibility of decisions to withdraw or withhold medical treatment essential to maintaining the existence of an incapacitated patient. There are, inevitably, conflicts of opinion in this area, and it is fraught with moral quandaries.

1.3 Individual autonomy

Although the religious and philosophical tenets of western society underpin the principle of sanctity of life, there is no absolute medical obligation to preserve human life at all costs.¹⁰ In matters of life and death, individual autonomy provides a basis for individuals to decide what shall or shall not be done to their person and this autonomy is often a cardinal and determinative principle. The seminal application of this principle can be found in Schloendorff v New York Hospital, in which Justice Cardozo famously stated: ‘Every human being of adult years and sound mind has the right to determine what shall be done with his body; and a surgeon who performs without the patient’s consent commits an assault.’¹¹

Individual autonomy is often regarded as being of such importance that in many cases it surpasses competing cardinal virtues, including the sanctity of life, patient welfare, altruistic paternalism and medical best advice and opinion. However, no principle is always paramount and even patient autonomy will sometimes yield to other competing imperatives. Thus, voluntary euthanasia continues to remain illegal in most jurisdictions.¹²

Patient autonomy is an important and empowering principle for competent individuals. Infants cannot express their rights, values or choices. Thus, end of life decision making for this group is probably one of the most profound ethical, legal and medical minefields of our time.

As the model of the western demographic nation-state progresses, topics once considered taboo or intractable are increasingly being discussed and resolved. Life and death decisions concerning critically impaired infants are one issue that impacts families and wider society and requires considered attention.

1.4 The importance of end of life decision making for extremely premature and critically impaired infants

This book focuses primarily on decisions to withdraw or withhold life-sustaining treatment from extremely premature infants and those suffering severe disability or debilitating medical conditions.¹³ These infants are often referred to as being born at the ‘borderline of viability’. This is likely to be the earliest point at which an infant can be delivered alive with a possibility of survival, although most probably with life-sustaining treatment.¹⁴

For some statistical references, Australia recorded that 8.3% of live births were pre-term in 2011 – that is, infants born before the 37-week gestation period.¹⁵ Of those born in 2011, 6.3% weighed under 2,500 grams.¹⁶ Birth weights of premature infants vary from very low (2,500 grams) to extremely low (under 1,000 grams).¹⁷ In 2011 Australia recorded that 0.9% of infants were born at 20–27-week gestation, a marginally higher percentage than those born at 28–31-week gestation (0.8%).

Figures from the UK highlight similar rates of premature birth: in 2011 7.2% of births were pre-term (born before 37-week gestation).¹⁸ In 2011 1.3% of infants were born at fewer than 24 weeks’ gestation.¹⁹ As will be detailed in Chapter 3 onwards, although infants born at such extreme prematurity can now often be saved from death, they rarely avoid life without severe disability.

The information age has engendered public awareness of medical technology. Consequently, parents of extremely premature and critically ill infants are often encouraged by the use of the digital age to request life-sustaining treatment from medical practitioners to attempt to prevent their pre-term infant from death.²⁰

Such requests are often made by parents even when the medical prognosis for the premature infant is extremely poor.²¹ Lantos and Meadow have described that many parents perceive the neonatal intensive care unit (NICU) as being ‘a saviour, a place where miracles will happen and babies are snatched from the jaws of death’.²² Arguably, this particularly reflects the attitudes of parents with strong religious beliefs who ‘wait for such miracles’²³ to occur or those who request the continuation of medical treatment even where doctors consider such treatment to be futile.²⁴ Where such disagreements cannot be resolved, parents or doctors may seek judicial guidance as to whether treatment can or should be withdrawn.

Undoubtedly, decisions regarding the desirability of treatment in cases concerning critically ill infants are complex, involving multifaceted considerations and competing principles and interests.²⁵ While there is an abundance of case law on the matter, particularly in the UK, there is a corresponding and notable absence of statutory provision and parliamentary intervention. One of the observations of this book is that decisions to withdraw or withhold life-sustaining treatment from extremely premature and critically ill infants should be governed, or at the very least guided, by a clear and authoritative legislative framework.²⁶

Decisions to withdraw or withhold treatment in cases of extremely premature or critically ill infants are fraught with inconsistency and lack of transparency. This is demonstrated in hospital clinical guidelines and case law from the UK, where the courts have been required to consider the withdrawal or withholding of life-sustaining treatment. In comparison, in Australia, over the past three decades, there have only been three cases requiring legal intervention, with two of these cases being heard in 2011 and 2012.²⁷ As medical technology has advanced over the later decades of the twentieth century, the instances in which newborn lives can be saved or extended have greatly increased.²⁸ Accordingly, the legal and medical professions are facing ever more situations that the inadequate regulatory framework struggles to address.

While adult patients lacking mental capacity may be able to exercise some patient autonomy, infants are entirely depend...