surinenglish

The debate about euthanasia begins again, ten years after Living Wills were introduced

Inmaculada Echevarría, who suffered from progressive muscular dystrophy, fought for the right to die.
Inmaculada Echevarría, who suffered from progressive muscular dystrophy, fought for the right to die. / G. M.
  • A decade after Inmaculada Echevarría won the right to die, regulations in Andalucía are the most advanced in Spain

It is now ten years since the death of Inmaculada Echevarría, the woman from Granada who demanded to be disconnected from the machines which were keeping her alive, and once again the subject of euthanasia, the right to die with dignity, has become a matter of debate.

At that time, Inmaculada’s case resulted in changes being put into effect in Andalucía about one specific aspect, the Law of Dignified Death, which included the concept of a Living Will. Now, once again, something has happened which has brought the subject back into the public eye: the suicide, filmed himself, of José Antonio Arrabal on 6 April, who expressed his anger at having to die “in secret”.

The impact of this recording was so strong that the Ciudadanos political party has now proposed a new law to the Spanish parliament, but its wording sidesteps the subject of euthanasia. The Unidos Podemos party has presented an alternative text, and several regional MPs have urged parliament to approve it.

Maturity

Dr Ángel Salvatierra, the head of the thoracic surgery unit at the Reina Sofía hospital in Cordoba and a member of the Bioethics Committee of Andalucía, believes that society is now sufficiently mature to tackle the debate.

“That’s my opinion,” he says, “but it is supported by a recent survey by the CIS which shows that only 10 per cent of the population is not in favour of opening the debate, 50.4 are in favour and 15.2 per cent think it is a good idea but are not completely certain. This means that a majority of the population agrees that it should be looked at,” he says.

It is, however, a sensitive subject which “only about two per cent of the world’s population” has considered, says Dr Salvatierra. At present, euthanasia is prohibited under Spanish law. It is only authorised in five countries in the world, and the Netherlands was the first to do so, 15 years ago. In most places, the subject is still out of bounds, although as Dr Salvatierra points out, “in Spain in general and in Andalucía in particular, the idea of the right to a dignified death was quickly accepted, and I think the time has come for euthanasia to be discussed once again.”

He also regrets that although ten years have passed since the new regulations were introduced in Andalucía, few people are aware of them. “There has been little publicity about the Living Will, and few people have signed one. Doctors here always inform patients about this possibility, because it is their right. It is very useful when the patient loses consciousness, and if medical staff are subject to rigid regulations,” he says.

He also points out that there are differences between Andalucía and other regions, such as Galicia. “Here, some things are normal, but not elsewhere,” he explains.

He recalls the case of Andrea, a 12-year-old girl with a terminal neurological condition. Doctors in Santiago de Compostela refused to remove the tubes which were keeping her alive and her parents had to fight a very hard battle until the authorities finally agreed in October 2015. “In Andalucía, it is almost normal now for medical support to be withdrawn in cases such as that, and for treatment to be rejected,” he says.

As the president of the Ethics Committee of Cordoba, Dr Salvatierra explains that there are three ways in which these cases are considered. “Either a relative of a patient who is unconscious or restricted in making decisions comes to us, or the patients themselves do so, or the doctors. The doctors consult the ethics committees most often, to resolve doubts.”

The procedure then is for a meeting to be held and the situation analysed in detail before making a decision.

These committees are normally only for consultation purposes, although in cases of donations between living people, for example if somebody donates an organ to a relative, the committee has to issue a report and authorise the donation before it can go ahead.

There are very few, if any, cases of consultations about dignified death in Andalucía, says Dr Salvatierra, “because the doctors are perfectly aware of how to restrict life support. The law has proven useful for patients, relatives and professionals.”

I ask him if it is true that Andalucía is ahead of the rest of the country in this field. “In this case we are pioneers and we are quite a long way ahead of the country as a whole. It’s fair to say it,” he confirms.

Echevarría, a pioneer

The case of Inmaculada Echevarría changed a great deal. She was 51 when she died, and for nine years she had been fighting for the respirator which kept her alive to be turned off. She had spent 20 years bedridden with muscular dystrophy. She had had a very difficult life: at the age of 11 she was diagnosed with a condition which would leave her tetraplegic; her husband died in a traffic accident, and as a result she was forced to give her eight-month-old son up for adoption. Her battle for the right to a dignified death resulted in tremendous controversy and the opposition of the Church, but she was finally transferred from the hospital in which she had spent so much time, after a pioneering decision by the Junta de Andalucía’s Ethics Committee to authorise it. The decision made it clear that restricting her treatment was in accordance with the law, and that no action could be taken against the medical professionals who disconnected the respirator.

Dr Salvatierra says that nowadays “mechanical ventilation is often stopped without causing any ethical problems. It means not keeping a person in a situation where they have no possibility of maintaining even a half-dignified life situation.”

In Andalucía, the case of Inmaculada Echevarría marked a before and after and inspired the pioneer law, Law 2/2010 of Rights and Guarantees of the Dignity of People in the Process of Death.

Living Will

One of the main features of this law is the Living Will and the Andalusian Register of Anticipated Final Wishes. This is a document, which has to comply with certain requirements, and can now be done online, in which the person, whilst in full possession of their faculties, “consciously and freely” states their options and instructions regarding health care which have to be respected in the case of clinical circumstances in which they cannot express their wishes. It cannot include instructions which contravene the law.

Registration centres

A person’s living will includes their medical history in case the medical personnel need to consult it. The will can be rejected, modified or cancelled at any time.

There are 56 places in which Anticipated Final Wishes can be registered; eight are in the provincial Equality, Health and Social Policies departments, 28 in hospitals, 14 in municipal health centres, four in regional health centres and two in specialist centres.