Is this where it ends?

The debate on the role of law and ethics at the end of life is an enduring one. Forty years ago, such debate was focused almost solely on the Netherlands when, in 1973, a physician facilitated the death of her mother following her repeated explicit requests for euthanasia. Although the physician was convicted, the court’s judgment set out criteria to determine when a doctor would not be required to keep a patient alive contrary to their will.

This set of criteria developed through a number of cases during the 1980s. In 1999, the Dutch government proposed legislation to codify existing practice. The Termination of Life on Request and Assistance with Suicide (Review Procedures) Act 2001 did not legalise end of life assistance, but instead provided statutory defences to prosecution, subject to certain procedures being followed.

Criteria challenge

Today, the Netherlands has been joined by Belgium, Luxembourg, Switzerland and, in the USA, the states of Oregon, Washington, Montana and Vermont, as jurisdictions which have enacted legal provision to permit assistance at the end of life.

While most have reached this point by different means, it is natural that one looks to the experience of other jurisdictions to inform the proposals recently laid before the Scottish Parliament.

Despite the variations in regimes, there are also similarities. Most jurisdictions that have considered such issues have had to address the challenges of recurring specific concerns: what form should a request for assistance to end life take; should there be a minimum age; how will the consultation and referral process be monitored; how is capacity to be determined; who will oversee reporting and scrutiny; who will provide such assistance; and, above all, how are transparency, accountability and equity to be ensured?

Many jurisdictions have experienced difficulties in agreeing on terminologies and definitions. For example, how can it be shown that a person’s suffering is at a point that it can no longer be endured? Legislative proposals have included descriptions such as unbearable, intolerable, unrelievable, hopeless, intractable, irremediable; and it has been questioned whether any of these words capture the essence of what an individual may feel at that moment and, if so, how can it be adequately reflected in legal provision?

What also of the concept of dignity? One argument is that the purpose of legislation would allow a dignified death. Is it possible to harness this powerful yet amorphous concept in a way that can be legally defined? A polarisation of views usually centres around whether dignity can ever be “lost” through illness and disease, or whether such conditions merely emphasise what it means to be human?

Scottish proposals

In November 2013, Margo MacDonald MSP introduced the Assisted Suicide (Scotland) Bill into the Scottish Parliament. The bill allows people, who are suffering with a terminal or life-shortening illness, to obtain assistance from another to end their lives without that other person facing any criminal or civil liability for the assistance they have provided. Its provisions set out the criteria and safeguards which must be satisfied by the person who wishes to end their life. These include that they must be over the age of 16 and have full mental capacity, that they make a clear declaration of willingness to consider seeking assisted suicide, and that they make two requests for assistance, both of which must be endorsed by two medical practitioners and noted in their medical records.

Timeframes are incorporated to allow for reflection and possible change of mind. A “licensed facilitator” – not necessarily a physician – will be appointed to provide “comfort and reassurance” and “practical assistance”.

The bill does not decriminalise or authorise euthanasia, which remains illegal. The protections from liability afforded by the bill only apply where the act of suicide is carried out by the person themselves within 14 days of the recording of the second request. The bill is with the Scottish Parliament’s Health and Sport Committee, with the stage 1 call for evidence expected early this year.

In 2010, Ms MacDonald proposed the End of Life Assistance (Scotland) Bill, which was defeated by 85 votes to 16. The bill aimed to “enable persons whose life has become intolerable and who meet the conditions prescribed in the bill to legally access assistance to end their life”, by decriminalising both euthanasia and assisted suicide under the single definition of end of life assistance. There are variations inherent in each of these definitions, but it is suggested that the fundamental distinction between the two concerns roles and responsibility. In euthanasia, the responsibility for overseeing the death rests with a person other than the one who wishes to end their life. In assisted suicide, the assistance is provided by another, but it is the person themselves, who wishes to die, who has the responsibility to bring about their own death.

Jurisdictional comparisons

Jurisdictions which have assisted dying regimes vary in their approach. Those of the Netherlands and Luxembourg encompass both euthanasia and assisted suicide; Belgium allows only doctors to perform euthanasia and assisted suicide is not explicitly covered, but there appears to be acceptance that cases of assisted suicide would fall under the Belgian provisions. All four US states permit only physician-assisted suicide. Where both regimes are available, surveys have shown that individuals will usually choose euthanasia – placing the responsibility for the dying process and death onto another.

Legislation in Switzerland permits assisted suicide but excludes euthanasia. The law does not require a physician to be involved, nor does it require the recipient to be a Swiss national. This latter aspect of Swiss law is unique, and the Dignitas clinic in Zurich has been the focus of much discussion around what is referred to as “suicide tourism”.

What constitutes “practical assistance”?

When legislation was passed in Oregon, some of the first challenges came from those who argued that, if they wished to end their lives, they were precluded from doing so because, due the nature of their disease, they lacked the ability to hold the medication in their hands, or put in it their mouths and ingest it. This was particularly resonant with those with a progressive neurological disease. If assistance is provided, at what point does it cease to be assistance and instead, become euthanasia – the primary responsibility having passed to another to bring about death?

There is a whole spectrum of what may be construed as assistance. To date, the law has not recognised helping someone travel to another country to die, as assistance; but is holding a person’s head up, or putting pills into their hand or mouth, or giving them a glass of water, euthanasia or assisted suicide?

Some concluding thoughts

Most legislation in place does not confer a personal right to seek assistance to die. It is arguably broader than that, since it creates an environment where, under certain conditions, it is lawful for that help to be provided.

The importance of confronting mortality, and the right to make autonomous decisions, are modern mantras not only confined to medical/legal debate. Medical jurisprudence has already acknowledged an individual’s autonomy to make decisions concerning the end of their life, but other issues remain unresolved: the protection of those who are vulnerable, and the need for society to ensure that any law, if introduced, applies equally and transparently to all.