End-of-life or ending life?

A RECENT case heard before the Court of Appeal in London addressed a controversial and ongoing ethical debate in medicine today. Three appellants sought to change the law on assisted suicide in order to allow a relative or doctor to help them end their lives. One had described his life following a catastrophic stroke as undignified, distressing and intolerable and said that he wished to end his life but was unable to do so because of his physical disabilities. The Court rejected their appeal.

In his judgement, the Lord Chief Justice Lord Judge said: “The circumstances in which life may be deliberately ended before it has completed its natural course, and if so in what circumstances, and by whom, raises profoundly sensitive questions about the nature of our society, and its values and standards, on which passionate but contradictory opinions are held.”

This case and the furore surrounding the Liverpool Care Pathway have refocused the attention of the media and public on the questions of how patients at the end of life are treated and whether they should be allowed or assisted to end their lives prematurely.

The aim of removing or at the very least minimising the distress that can be experienced by dying patients unites all health professionals. Despite the best efforts of palliative care, this remains an aspiration we are far from achieving and may be unable to achieve for every dying patient. It is not hard to envisage a situation as described above where the quality of life becomes so grim, so desperate, that death appears preferable.

Shared decision-making at the end of life raises many challenges and the associated ethical issues can give rise to some of the most difficult and controversial questions that doctors face. The temptation may be to avoid becoming involved in what can be an emotive and highly charged debate, viewing the issue as too complex, too sensitive and one in which we as individuals lack expertise and confidence. Doctors may prefer to remain neutral, avoid becoming embroiled and allow regulators, politicians and the courts to take the lead.

But it is likely that all of us will have direct experience of patients at the end of life. We will have been involved in decision-making processes and will have encountered the ethical conflicts that can arise. It is this direct involvement and experience that I think permits and, arguably, requires health professionals to contribute to this debate and why the public and politicians look to us to inform the discussion.

Although an article such as this cannot do justice to the full scope of the debate, my intention is to set out some of the key ethical issues that inform the discussion and need to be considered by us all.

My body, my choice

No simple route map can help us navigate through this moral maze but the approach developed by the American bioethicists Beauchamp and Childress remains highly influential. They suggested consideration of four prima facie duties: respect for autonomy, beneficence, non-maleficence and justice.

Active reflection on these principles could offer an approachable, replicable and inclusive analytical framework that could help doctors make reasoned decisions when faced with an ethical dilemma. The attraction of such an approach is clear, but when you attempt to address what might appear to be a relatively unambiguous moral dilemma, it becomes evident that the principles can compete for priority. Given the social environment in which they were developed, it is perhaps not surprising that the individual’s right to self determination expressed in the principle of autonomy has emerged as the over-riding principle trumping all others. This principle was articulated by the presiding judge in a landmark 1914 court decision (Schloendorff v. Society of New York Hospital):

“Every human being of adult years and sound mind has a right to determine what shall be done with his own body…”.

The principle of autonomy generates a number of rights: the right to control personal information (confidentiality), the right to make decisions about medical treatment (informed consent) and the right to refuse treatment even when this seems irrational to others.

Respect for these rights also informs the actions we can reasonably expect of others. It follows that doctors have a duty to respect an autonomous patient’s wishes and to maximise their autonomy wherever possible, and should not interfere in any way that restricts the autonomy of an individual. The introduction of advance directives reflected a desire to preserve the right to autonomy even when an individual has lost their ability to be involved in decision making. Most often these directives attempt to anticipate end-of-life issues and specify what treatment the individual will accept and what treatment they would decline.

Respect for autonomy is not only an ethical but a legal requirement and it has been clearly established that treating a competent individual against their wishes or as described in an advance directive constitutes assault.

If the principle of autonomy allows a competent individual to refuse treatment even if the refusal of the treatment is likely to lead to death, it follows that there is a right to be allowed to die (it is now common to ask patients if they wish to be resuscitated). Whilst it can be acknowledged, albeit uneasily, that competent adults are at liberty to commit suicide, does autonomy also confer a right to commit suicide and, to go even further, does it confer a duty on doctors or others to assist when an autonomous individual wishes but is unable to end their own life?

Tony Nicklinson – one of the appellants mentioned above – had sought a change in the law so his wife would not face prosecution for assisting his suicide. His case was unsuccessful; however, he did end his life but only after several days of refusing food and water rather than by being helped to take a fatal overdose. As we have seen, as an autonomous individual he had the right to refuse treatment, and for others to have tried to keep him alive against his wishes would have been illegal. Yet it also would have been, and remains, illegal for his wife to have assisted him as he wished.

It is not surprising that, whilst acknowledging the importance of respecting autonomy, many will have great difficulty in accepting that the same principle that underpins confidentiality and informed consent should inevitably lead to endorsement of a right to assisted suicide.

There is a recognised unease with accepting the over-arching primacy of autonomy and how this has been translated into the culture of individual rights and the duties placed on others as a result. It can be argued that this approach has become associated with a consumerist, libertarian approach to medical care that compromises the autonomy of other individuals and not only trumps the other principles but appears to disregard them completely.

Do no harm

The reality is that we already restrict the autonomy of individuals when it conflicts with other ethical principles; we do not prescribe antibiotics to everyone who requests them nor do we permit smoking in public places.

Supporters of assisted suicide will argue that the principle of non maleficence – first do no harm (primum non nocere) – also supports their case. On initial examination the concept of not doing harm seems intuitively correct, readily acceptable and appears to fit easily and consistently with the other prima facie duties and reflects current examples of best practice.

However, what if there are competing harms? How should we behave when the harm of being kept alive and prolonging dying appears to be greater than the harm of death itself? If the means to end suffering is available should we not at the very least permit those who choose to do so, to take this course of action?

Although many may find these arguments persuasive there are several equally eloquent and well-reasoned ethical objections to following the example of Holland and Switzerland. Not least among these is the belief that many members of the public and health professionals hold regarding the sanctity of life. This belief may be a tenet of religious principles or may equally arise from a moral standpoint that, whatever the circumstances, it is always wrong to deliberately kill someone and it is equally wrong to help someone kill themselves no matter how voluntary this decision is. It could be argued that when treatment is withdrawn or withheld, the intention is to let the patient die and it will have the same consequence as actively intervening to end their life – but many would reject the proposal that these actions have the same moral equivalence.

A slippery slope

Slippery slope arguments are often used in ethical debates. Put simply they suggest that although you may embark on a course of action with clearly expressed limitations to the scope of this intervention, almost inevitably these boundaries will be loosened and the scope of the action will be extended beyond what was originally envisaged. So, if the introduction of assisted suicide is permitted, even if tightly regulated and restricted to a few specific clinical circumstances, before we know it the remit of this intervention will have been extended and ultimately could lead to patients who are helpless, vulnerable and whose care is costly being pressurised or coerced into state-sponsored euthanasia. There are echoes of this argument in the furore over the Liverpool Care Pathway where some commentators portrayed the decision to withdraw active treatment which was considered futile and inappropriate more as a decision based on a desire by the NHS to save resources.

A variant of the slippery slope argument suggests that if patient A has a certain condition and as a result decides to and is permitted to end his life this inevitably devalues and makes less meaningful the existence of patient B who has the same condition but has no desire to end his life. How can Patient B and all others in that situation possibly wish to carry on living in circumstances which Patient A found so intolerable and distressing?

This argument is also reflected in the concern that although some patients may already choose to end their lives because they do not wish to be an emotional or financial burden on their family or the NHS, more will feel increasingly compelled to follow this course of action if assisted suicide is legalised. This could in turn lead to unscrupulous relatives or care providers pressurising or coercing patients into acquiescing to this course of action.

Erosion of trust?

Justifiable concern has also been expressed about the effect the acceptance of physician-assisted suicide would have on how doctors view themselves and are viewed by patients and society. It has been argued that pursuing this particular course of action appears to be counter to both our intuitive and professional standards and would diminish our own perception of our professional value and our ability to intervene and infl uence other areas. It could also decrease the trust between patients and doctors and destabilise the covenant that allows us to act as advocates for many of the most vulnerable members of society.

This remains a complex and extremely contentious issue where the concept of unintended harm can seem an appropriate argument for both sides of the debate to employ. However, as we have seen with the coverage of the Liverpool Care Pathway, there is a need for a more informed, reasoned and thoughtful discussion that considers all the competing arguments.

Assisted Suicide and the Law

• The 1961 Suicide Act makes it an offence to encourage or assist a suicide in England and Wales. However, in the last few years many UK citizens have travelled to Dignitas in Switzerland to end their lives - no relative or friend who has accompanied them has been prosecuted. In Scotland the situation is more uncertain as there is no specific legislation concerning assisted suicide. In other countries, such as Belgium, Luxembourg and the Netherlands, legislation has been introduced to allow assisted dying.
• In 2010 the Director of Public Prosecutions issued guidance regarding the factors which would be considered when deciding if someone would face prosecution for assisting in a suicide. Although indicating that the individual circumstances of each case would still need to be investigated, these included whether it was a “voluntary, clear, settled and informed” decision and those assisting would have to demonstrate that they had acted out of compassion and with no financial motivation.
• In 2012, MSP Margo MacDonald launched a second bid to change the law on assisted suicide in Scotland. The aim is to make it legal to assist competent adults with a terminal illness to end their lives. Following consultation, the draft proposal received enough support from MSPs to go forward. No timetable for debating the draft legislation has been agreed. Similar bills have been proposed in the UK parliament.

Dr Niall Cameron is a GP and associate adviser at NES