The case of Eluana Englaro

In 1996, 4 years after the accident, the Trial Court of Lecco, the city where Eluana lived, declared Ms Englaro incompetent and appointed her father Beppino Englaro as her guardian. For the next 13 years, Mr Englaro would litigate to enforce what he considered to be his daughter's wish to discontinue life-prolonging treatment.

In January 1999, the Trial Court rejected Mr Englaro's request to discontinue Eluana's ANH. Mr Englaro appealed the Trial Court's decision to the Court of Appeal of Milan. In December of that year, the Court of Appeal issued a decree indicating that it would not hear the appeal.

In February 2002, Mr Englaro filed a new petition with the Trial Court, again requesting permission to discontinue ANH. Again, the Trial Court rejected Mr Englaro's request, and again Mr Englaro unsuccessfully sought appellate review of the Trial Court's decree. In response to this appellate rejection of his appeal, Mr Englaro, filed an extraordinary recourse to the Italian Court of Cassation to review whether the Court of Appeal had correctly interpreted and applied the law.

The Court of Cassation issued its decision in April of 2005 dismissing the case for lack of a judicially appointed guardian. In response, Mr Englaro requested appointment of a guardian ad litem in September of 2005. The court-appointed guardian ad litem agreed with Mr Englaro that Eluana's ANH should be discontinued, but, once again, the Trial Court rejected Mr Englaro's request for discontinuance. Towards the end of 2006, the Court of Appeal, although ruling for the first time in this litigation that a guardian could make such a decision, again dismissed Mr Englaro's petition to withdraw life-sustaining treatment, holding that the evidence was insufficient to clearly indicate that Eluana would have wanted to terminate her ANH.

Mr Englaro again went to the Court of Cassation, whose sentence in October 2007 is undoubtedly a turning point for withdrawing of care issues as it confirms, if need be, that ANH is a medical treatment and that it can be suspended if the irreversibility of the vegetative state can be ascertained and that the living will of the subject may be expressed in various ways in opposition to the continuation of care.1

A few months later, in July 2008, the Court of Appeal of Milan has given its authorisation for artificial life support to be withdrawn, motivating the sentence withthe evaluation of the exceptional length of Eluana's permanent (therefore irreversible) vegetative state, coupled with the equally exceptional inclination of her character towards freedom, as well as the incompatibility of her conception of the dignity of life with the full and irrecoverable loss of her motor and psychic faculties and with the merely biological survival of her body in a state of total subjection to the will of others, all factors which appear, and which it is reasonable to consider prevalent in the species over the need to protect biological life in itself….2

This entirely reasonable and humane ruling sparked a crusade, led by the government of Prime Minister Silvio Berlusconi and the Vatican, with the complicity of the media, against the court and Eluana's father, which included insinuations that the latter was murdering his daughter.3

Eluana's final months: chronicle of a death foretold

On 1 August 2008 the Italian parliament raises an attribution conflict against the Court of Cassation and the case ends up to the Constitutional Court.

On 3 September 2008 the family asks the Lombardy Region to indicate a hospital where the withdrawal of ANH could be put into effect. The Region refuses saying that doctors would breach “professional duties and obligations” if they allowed Eluana to die.

On 8 October 2008 the Constitutional Court sentences that what had been stated by the Court of Cassation and the Court of Appeal was right.

On 11 October 2008 Eluana's condition aggravates due to a uterine haemorrhage. It is decided not to give her blood transfusion and let nature run its course. Surprisingly, the bleeding stops spontaneously and Eluana recovers.

On 16 December 2008 the Italian Minister for Welfare, Maurizio Sacconi, emanates a guiding act for the Regions in order to “guarantee any individuals with disabilities the right to nutrition and hydration” in every facility of the Italian National Health System.4

On 18 December 2008 the Città di Udine hospital declares it is willing to receive Eluana, provided that the Friuli Venezia Giulia Region “takes charge of following this path of mercy”.

On 16 January 2009 the Città di Udine hospital changes its mind due to the tangle of administrative rules and the possible overlap of responsibilities between State and Regions.

On 26 January 2009 the Lombardy Administrative Regional Court uphold the appeal of Englaro family against the Lombardy Region, affirming that “the constitutional right of refusing treatments, as outlined by the Supreme Court, is an absolute right of freedom”.

On 2 February 2009 Eluana is transferred to La Quiete nursing home in Udine, where the withdrawal of ANH is planned to start three days later.

On 6 February 2009 the withdrawal protocol starts. Prime Minister Berlusconi issues an emergency decree forbidding doctors to remove the tubes. However, President Giorgio Napolitano rejects the decree, saying that it is unconstitutional because it over-rides Italy's highest court. Then, the Council of Ministers enacts the Bill that allows ANH for individuals who are unable to attend their own needs.

On 7 February 2009 the withdrawal protocol continues. In Parliament a race against time starts to put right the Bill. Inspectors sent by the Minister for Welfare visit the nursing home and find administrative irregularity.

On 8 February 2009 the withdrawal protocol continues. Eluana is sedated. The Public Prosecutor's Office of Udine investigates on the administrative anomalies of the nursing home.

On 9 February 2009 the Region and the Public Prosecutor's Office decide that there are no reasons for stopping the withdrawal protocol. The voting for the approval of the Bill is scheduled for the next day.

On the same day at 19:35 (GMT+1) Eluana Englaro's heart stops. The Minister of Welfare asks that the voting on the Bill carries on all the same.

The right-to-die controversy

In a politically healthy climate, such a sad circumstance would have remained a private affair for the patient's family. The fact that this tragedy became the centre of media attention and an occasion for political manoeuvring sheds light on the state of the Italian ruling elite.

We are witnessing a shift from bioethics to biopolitics. The intent of bioethicists no longer seems to be that of producing analysis and bringing new arguments in support of the different positions, but rather that of influencing, through biopolitics, the power relationships that pervade society.

Public opinion has overwhelmingly been sympathetic to the father's difficult decision, in stark contrast to the reactionary stance taken by the government. Opinion polls conducted by SWG for the magazine Donna Moderna showed 81% of those interviewed to be in favour of terminating the tube-feeding. Most Italians were convinced that Eluana's parents had pursued every possible option to save their beloved daughter. Eluana's case brings to the fore the constitutional right of an individual to reject unwanted efforts to sustain his or her own life.

In the aftermath of the Court of Appeal ruling of July 2008, scores of politicians and clerical figures initiated a frenzied campaign opposing the termination of life support on religious grounds.

Italy is a heavily Catholic country where the Vatican has great influence. In all this, the Vatican mounted a fierce opposition claiming Eluana was alive. Cardinal Baragan has labelled the withdrawal of ANH as murder. Monsignor Elio Sgreccia, president emeritus of the Pontifical Academy for Life, stated that Englaro had the right to be kept alive. “It is the duty of the doctors, of society, and of the political institutions to administer her essential foods to keep her alive. No one has the right to take her life away from her,” he said.

Recently, Pope Benedict XVI told pilgrims that “euthanasia is a false solution to suffering” and, in Caritas in Veritate, “… a pro-euthanasia mindset is making inroads as an equally damaging assertion of control over life that under certain circumstances is deemed no longer worth living”.5

Euthanasia is, indeed, illegal in Italy, but patients have the right to refuse treatment. Jurist Stefano Rodotà, a constitutional scholar, insists that, despite the lack of an explicit text, the legal framework for the protection of this right is established by a number of rulings; first and foremost, the one issued by the Cassation Court in October 2007 that upheld the right of an individual to “refuse medical help and to die with dignity”.

Over 17 years ago, a friend of Eluana Englaro died in an awful accident and was left in a vegetative state for a period of time. Then, his organs failed and he died completely. We learn from Eluana's father that she was horrified and told family and friends that she “wouldn't have wanted to be kept ‘going’, had something like this happened to her”.

It is on that basis that the father of Eluana Englaro argued his daughter should be allowed to die, because some time before her accident she had expressed the wish not to be kept alive while in a coma, thus indirectly refusing treatment.

Regardless of this crucial issue—the inalienable right to refuse any undesired treatment—the debate in Italy has focused mostly on the probably secondary controversy regarding whether ANH should be considered in all respects as a form of medical treatment or of tender loving care, part of a duty of solidarity the physician should always carry out.6 According to the 2000 Document of the Italian Ministry of Health Commission on Nutrition and Hydration in Patients with Irreversible Loss of Consciousness,7 it is possible and legitimate to withdraw ANH on the basis that they are, to all effects and purposes, forms of medical treatment. The concept justifying this position is that, among patients in PVS, ANH amounts to the administration of chemical compounds which only physicians can prescribe and control, whereas the recipient cannot be aware of being fed. For this reason, according to the Commission, these are excessive medical acts which fail to respect the dignity of the human individual. More recently, however, this issue has split in two opposite views the National Committee for Bioethics.8 While some found that ANH was a treatment that could be refused even through advanced care directives, other ascribed the practice among ‘acts that are ethically and deontologically due’ and which the physician cannot refuse the patient. It is noteworthy that all Italian and foreign scientific societies have recently confirmed that ANH should be considered as a form of medical treatment in every respect.9

This is probably a moot point, as outlined by Truog and Cochrane in a recent article. They change the standpoint, affirming that the justification for withdrawal of ANH does not depend on whether it is administered artificially (ie, by means of feeding tubes) or naturally (ie, by mouth). According to their opinion, this distinction is irrelevant, since the decision should be based on the patient's fundamental right to refuse any undesired treatment.10

The controversy here is not about a religious principle but a democratic one: the freedom of conscience, of both religious and non-religious people, is at stake.

Conclusive remarks

With the notable advances of medicine, doctors are increasingly faced with ethical issues. The vegetative state is just one of the many clinical conditions that obligate health professionals to reflect on ethical matters.

A law is missing that could limit ambiguity about the representation of the patient's will when in a vegetative state in the matter of medical care. The Italian government is ‘working on it’, but there is concern about this is going to limit people's personal autonomy and constrain living wills to some extent. Advanced care directives are not yet recognised under Italian law but probably represent the best way to safeguard the principle of autonomy. The trust between patient and doctor—the so called therapeutic alliance—is well put only when it enforces autonomy. We should not aim, paternalistically, at relieving the burden of sorrow, but rather inform and enable patients to fully understand, evaluate and make their own choices.

Should a formal living will be unavailable, an opportunity to reconstruct the will of the incapacitated patient about ANH and life-supporting care withdrawal with the help of family members and friends should not be missed.

There is an increasing need to calibrate accurately our interventions, trying to discriminate what is ‘proportionate’ and what is not, with regard to each one's own life experience and values rather than to a merely biological concept of life. To do this, technical expertise is not sufficient; other factors, more personal and difficult to standardise, concerning the meaning of life itself and its quality, come into play.

The withdrawal of life-supporting care and of ANH in particular in PVS remains a measure which violates a tradition and a consolidated practice. It was thus inevitable that it would create great controversy.

Such is the capacity of medical technology to intervene in the process of dying and to modify it that, in many cases, the very moment of death rests on a medical decision. We should work towards making the decision process that leads to the continuation or suspension of ANH follow an explicit procedure promoting the sharing and respect of the diverse moral responsibility of family members, nursing and medical staff.

The story of Eluana should prompt us all to reflect. Physicians have a great responsibility to use their knowledge and skill in the primary interest of the patient. Magistrates are asked to make a great effort to interpret the rules in order for them not to be too strident in contrast with today medicine, so changeable and sometimes disconcerting. Politicians should take cognisance of the perverse effects the invasion of individual life sphere may cause, when biased moral conceptions are imposed on an entire society. It is urgent and necessary that the government acts, on one hand, by giving legal value to advance directives, and, on the other hand, by issuing a law that allows physicians to withdraw life-sustaining treatments without the risk of incurring criminal punishment. Finally, those who have the duty of informing and educating the public opinion should help people to cope with the finiteness of human condition, the intrinsic limits of medicine, and the responsibility to give in due time indications on values inspiring the choices about end-of-life.