From CMF files - cmf file 29 (2005) - autonomy - who chooses?
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The patient's 'right to choose' is a cliché for an idea that is growing in medicine, and is the driving force behind many of the major issues in bioethics today. But is autonomy out of balance, with individuals exercising their rights as absolutes and paying less and less consideration to their personal responsibilities and the common good? How has medicine arrived at the position where the right to choose is paramount, and what should a Christian response be?
For many people the right to do what they wish with their bodies, for whatever reason, is paramount. Autonomy is central to arguments used in favour of physician-assisted suicide (PAS). Such bids for self-determination are also found in debates around abortion and reproductive ethics, and are the driving force behind increasingly legalistic and consumerist healthcare systems in the 21st century.
Autonomy derives from the Greek words auto (self) and nomos (law). Within healthcare it refers to the 'freedom that a person has to order his or her life according to his or her own desires and values'. This involves independence, self-reliance, and the patient's right to make decisions about his or her life, including decisions about the treatments he or she wishes to receive.
In the past doctors thought they should make all the decisions because they believed they knew what was in patients' best interests. This belief was generally put into practice as patients seldom challenged their doctors' decisions, even if these went against their own wishes. Such 'paternalism' led to abuses of power where patients were not informed of the different treatment options available.
While the desire to enable individuals to take responsibility for their lives is unarguably good, many commentators are now asking whether the quest for autonomy has been over emphasised. For example Daniel Callahan, founder of the Hastings Center for Bioethics, in Garrison, NY, described PAS as 'autonomy run amok'.
This paper therefore looks at the origins and responses to autonomy, and examines the issues in the light of Christian teaching.
In Western culture the rise of individualism that lies behind the quest for autonomy can be traced to the Reformation. Martin Luther (1483-1546) and John Calvin (1509-1564) challenged the medieval Catholic view that a believer's relationship with God was mediated by the church and the priesthood. They emphasised that the believer-priest stood before God, with no mediator except Christ. Human autonomy was seen within the context of this relationship and Christians were called to live responsibly before God.
After the Enlightenment started in the late 17th century European philosophers such as Voltaire (1694- 1778) and Jean-Jacques Rousseau (1712-1778) challenged the predominant Judaeo-Christian worldview. These Enlightenment philosophers declared that God was either irrelevant or non-existent. Human beings, not God, became the measure of all things. They promoted humanism and the rights of the individual, laying the foundations for an ideology based on individual liberty that led to systems such as liberal democracy and free market capitalism.
While the previous moral consensus based on Judaeo-Christian teaching had constrained many excesses, society now found itself with no moral systems to keep individualism in check.
In the 1960s, just as bioethics was emerging as a field of study, patients began to assert their rights and the principle of autonomy gained increasing prominence. This move was driven by the general shift away from moral absolutes, as well as by the rapid growth of medical technologies, many of which were perceived by the public as burdensome and over-used.
Today the UK's law recognises a patient's right to be informed of his or her diagnosis, the risks and benefits of treatment, and available alternatives. Patients can refuse treatments they don't want, even if the doctors believe the treatment would be beneficial. Indeed to give a patient treatment without consent, or against his or her wishes, constitutes an assault.
Many people regard Principles of Biomedical Ethics by the American ethicists Tom Beauchamp and James Childress as the textbook of contemporary Western bioethics. These writers acknowledge our pluralistic society's loss of shared moral values, but propose four principles or rules that they believe can form a common guide in ethical decision-making: Autonomy, Non-maleficence, Beneficence and Justice. Although Beauchamp and Childress regard all four principles as crucial, they emphasise respect for a 'personal rule of the self that is free from both controlling interferences by others and from personal limitations that prevent meaningful choice'.
Other writers argue that the right to self-determination must take precedence over all other values. For example, John Harris, Professor of Applied Philosophy at the University of Manchester, claims that autonomy is paramount. 'Since it is my life, its value to me consists precisely in doing with it what I choose,' he writes. Similarly, American euthanasia campaigner Jack Kevorkian advocates 'absolute personal autonomy' as the sole basis for medical ethics: 'Do and say whatever you want to do and say at any time you want to do or say it, as long as you do not harm or threaten anybody else's person or property.'
Some people claim that the rise of autonomy-based healthcare ethics heralds a new era of respect for individ-uals. Others including many evangelical Christians, are less sure. American professor of systematic theology John Frame goes so far as to say, 'The word autonomy should be rejected, since it almost invariably connotes lawlessness, which is the opposite of man's responsibility to God.'
One problem when discussing autonomy is that the word means different things to different people. For Beauchamp and Childress autonomy is 'not a univocal concept', but for Kevorkian it must take precedence. For Frame autonomy equates to anarchy.
An American professor of Christian ethics J Alan Branch helpfully proposes three classifications of autonomy, and they can each be considered in the light of a biblical worldview.
Branch describes partial moral autonomy as 'the right of each person to choose his or her own course of action within boundaries of accepted standards and norms'. This it is not absolute freedom without restriction, but it asserts and protects the patient's right to choose.
Partial moral autonomy assumes that certain actions are wrong and thus should be prohibited, not just for the sake of the individual, but for the good of the whole community. So for example, doctors do not allow people with Severe Acute Respiratory Syndrome (SARS) to wander around, despite the fact that they may want to do so. They are kept in quarantine for the greater public protection. Their autonomy is restricted.
Autonomy operating within the context of Beauchamp and Childress' four principles is an example of partial moral autonomy. Although autonomy is essential, it must be balanced with the other three principles. Adopting these principles could form a 'common morality', a set of moral rules that all members of society can subscribe to, regardless of their personal beliefs, thus providing a source of consensus.
This notion of autonomy within limits fits well with Christian teaching. The first chapters of Genesis set out the nature of relationships between God and his creation. Human beings are said to be made in God's image. The way God intended humanity to live as his image in the world can be seen in Genesis 2:15-17. To start with, humans were given a vocation to tend and care for the garden. They were then given per-mission to make use of what was in the garden. This vocation and permission, however, needed to be acted out in the framework of moral responsibility that sought God as its reference point. A key aspect of what it is to be human therefore is the ability to make moral choices, and the first choice is deciding where to seek guidance in this decision-making. In the New Testament, Jesus makes it clear to a rich young ruler that human freedom even extends to the ability to make poor choices.
Autonomy within healthcare affirms our God-given right to choose and exercise free will. However, the challenge is to make choices within God-given boundaries. Freedom to choose is real and biblical, but it shouldn't be seen as the key to morals. A tension will always exist between freedom, accountability and responsibility.
Throughout the Bible, and to the present day, God in his wisdom gives people various alternatives to choose from and the free will to select. Our God-given ability and right to exercise free will is only appropriately used when we seek to live under the rule of the Creator.
For Branch, civil autonomy is an individ-ual's right to be free from pressure or coercion when making a decision.
One means of exercising civil autonomy is seen in the principle of informed consent – the individual's right to decide whether to use a medical intervention or take part in research. This concept first emerged in the 1950s and it is paramount in medical practice today. For patients to exercise civil autonomy, they must be given sufficient information about the nature of their illnesses and treatments so that they can weigh up the alternatives. It is also imperative that there is no influence or coercion from the medical system or family and friends.
In reality, this is often complicated because clinicians do not find it easy to assess whether the patient has the ability to weigh up alternatives and give consent. It is also difficult to ensure that the patient is free from external influence.
The Bible too condemns coercive acts as it demands justice for all. This is in part due to the immense value and dignity placed on human life. 'He who oppresses the poor shows contempt for their Maker, but whoever is kind to the needy honours God.' Indeed Deuteronomy 10:17-19 reveals God as the defender of the defenceless, citing the fatherless, widows and aliens as representatives of people who would have been most open to abuse in Israel's society. All were in danger of exploitation, a situation analogous to that of a patient or research participant.
The concept of libertarian autonomy fits much less comfortably with Christian thinking. It refers to freedom, not just freedom from coercion, but from any constraining norms of behaviour. It takes the rights of partial moral autonomy, but rejects the restrictions of any moral accountability or dependence on any god. Arguably it represents the logical exercise of our God-given free will in a secular society.
This right to pursue whatever course of action I choose is the form of autonomy asserted by those seeking to legalise euthanasia. It assumes that each human can determine right from wrong without reference to God or each other. In this, ethics becomes just a matter of subjective opinion.
In contrast, physician and Christian ethicist John Wyatt writes, 'I have a degree of independence, the dignity of genuine choice, the relative freedom of a creature. But, it is not simply “my” life to do with as I please. My life can have meaning only in relation to God.'
The biblical worldview consistently affirms man's dependence on God. We only came into being because of God's creative act and we continue to exist only because of his divine intervention. Paul says that God 'gives life to everything' and in the words of Elihu to Job: 'If it were his intention and he withdrew his spirit and breath, all mankind would perish together and man would return to the dust.' Jeremiah also notes: 'I know, O Lord, that a man's life is not his own; it is not for man to direct his steps.' Christians believe that they don't own themselves, but instead belong to God. While God gives humans freedom to do whatever they please, his desire is that they do what is right.
Christian ethicists Scott Rae and Paul Cox suggest that to speak of autonomy for Christians is something of an oxymoron, because we live our lives under God's sovereign direction, constrained by his Word. Yet, as we have seen Christians can seek to promote partial moral autonomy and civil autonomy for our patients.
Christians, however, should pursue a radical alternative to libertarian or absolute autonomy which sets 'me and what I want' above all else.
The idea of autonomy is to set people free from constraint and coercion, so that they can live full lives. Initially this seems to fit well with Christianity, which talks of Jesus setting people free. But when New Testament writers talk of freedom, they are meaning something very different to saying that people should have the power to do as they please.
The apostle James refers twice to 'the law that gives freedom'. At first this could seem self-contradictory. It is certainly at odds with the secular view of freedom, which tends to equate it with an absence of legal restraint. In John's gospel the Jews tell Jesus that they have no need to be set free, because they 'have never been slaves of anyone'. Yet Jesus responds by saying: 'I tell you the truth, everyone who sins is a slave to sin. Now a slave has no permanent place in the family, but a son belongs to it for ever. So if the Son sets you free, you will be free indeed.'
Rather than a sense of empty anarchy, New Testament freedom refers to a release from patterns of thought and behaviour that run counter to God's ideal plan for human beings. The New Testament writers make it clear that people have choices. They can serve their own ideas and strive to satisfy their own desires, or they can choose to serve God. The apostle Peter writes of having been granted freedom from sin, but voluntarily deciding to live as a servant of God. On the night before his crucifixion, Jesus also prayed for a way out of the ordeal ahead, but then added, 'yet not what I will, but what you will'. He showed how his own autonomy was tempered with obedience to God, and directed toward the service of other people.
Several times Paul writes that his desire to serve God leads to voluntary restraint of his freedom. In the culture of the time, a religious teacher could expect his followers to pay to hear what he had to say. But Paul turned down his right to earn a living from his preaching to serve the church more effectively. He called believers to follow his model, giving up their freedom for the sake of the church and to 'submit to one another out of reverence for Christ'.
There are numerous calls in the New Testament for the church to temper Christian freedom with responsibility to the community. Paul explicitly tells the Ephesians that they are to 'look not only to [their] own interests, but also to the interests of others', whilst the Galatians are told to 'serve one another in love'. In this context, we can see that believers are to seek autonomy that is not only limited by God's sovereignty, but also by concerns for the community and its common good.
Human beings were created by a relational God first and foremost for relationship with him, and our individuality is not defined by what we strive to achieve, but because God calls each one of us by name. As Gilbert Meilaender writes, 'We are most ourselves not when we seek to direct and control our destiny, but when we recognise and admit that our life is grounded in and sustained by God.' Alongside this, we were also created for relationship with each other: as part of the Body of Christ, we are in community with all those who God has called by name. Carrying each other's burdens is an essential part of this relationship. The concept has its roots in the Old Testament, where one of God's intentions for Israel was to create an ideal society that would corporately bear witness to him.
In addition, Christians believe that God has not made us independent individuals, but placed us in families where 'mutual burdensomeness' is part of the created order. None of us can act in isolation and affect no one else. All of our decisions should take account of the needs of these shared relationships, not just our own wants and desires. One example of mutual burdensomeness in action is marriage. In this two individuals give up part of their autonomy, but when it works well they gain a new freedom that grows out of the commitment.
The Christian view of autonomy thus holds in tension the respect and dignity derived from being made in the image of God, with an awareness that this autonomy is only possible when it is sustained in relation to the Creator and our fellow human beings.
Today's emphasis on patient autonomy reacts against the previous culture of 'doctor knows best', where clinicians failed to engage with patients as equals. Asserting autonomy has helped to address this imbalance and empower patients, as well as reminding doctors not to misuse their position of power.
However, current interpretations that promote individualism above all else, run the risk of further increasing social fragmentation and devaluing the concept of community. In medicine, the patient becomes the 'client', the doctor a 'service provider'. But would we really welcome a purely technical healthcare system where the 'care' of patients is pushed out in favour of 'rights' and 'consumer choice'?
It is interesting to see some writers in secular journals questionning the role of absolute autonomy in modern bioethics. The Dutch ethicist Marian Verkerk for example, recently called for a notion of 'compassionate interference'. Responding to pleas from a psychiatric nurse who was working with homeless drug addicts with psychiatric problems, Verkerk describes how an over-emphasis on self-determination and non-interference can leave needy patients without appropriate care. Instead of only focusing on respecting the autonomy of patients by not interfering, she asks healthcare professionals to take a more active and committed role by applying a caring or relational perspective in their work.
Verkerk and other ethicists question our 'cultural obsession with indepen-dence' and suggest a 'model of reciprocity'. In fact, libertarian autonomy can be seen as a failure of involved and supportive relationships.
Christians should address the trends that diminish doctor-patient relationships, and work to rebuild trust with patients. Christianity directs us towards relational autonomy and highlights new, alternative models for patient care. For example, John Wyatt proposes an 'expert-expert relation-ship', a collaboration between the patient and the physician based on mutual respect and trust. In such an atmosphere, the patient is an equally valid expert with specialist knowledge of his or her own personal concerns.
This approach places respect at the centre of doctor-patient relationships. After all, Christian caring treats people as individuals and strives to protect their dignity. Autonomy is an important concept with Christian origins. However, its use in discussions about medicine is multifaceted, and we must be cautious about approaches to self-determination that deny responsibility or moral accountability.