Organ donation consent: lifting the burden off those left behind

A kidney intended for transplantation is brought into an operating theatre at the University Hospital of Vaud in Lausanne Keystone / Leandre Duggan

What do you do if a loved one dies but you don’t know their view on organ donation? A proposed change to the law in Switzerland will presume the deceased wanted to be a donor unless they explicitly said otherwise while alive. The issue raises several ethical concerns.

Ruth Allimann’s life was turned upside down 25 years ago when her 23-year-old son, Stéphane, tried to end his life. It remains a painful subject. Stéphane did not die immediately but suffered irreversible brain damage.

“I had to ask the nurse to turn off the life support,” Allimann, now in her seventies, tells SWI swissinfo.ch.

In Basel, where Stéphane was hospitalised, the family discussed the question of organ donation with the doctors. At that time, transplantation was still a recent technique; Allimann and her husband did not have a position on the issue and had never spoken to their son about it.

In their case, the answer was spontaneous. “My husband and I said yes to complete donation, without thinking, as if Stéphane had answered in our place,” Allimann says. Thinking of the lives saved helps them to make sense of the brutal disappearance of their child.

But it is rare that the decision is so clear. “Losing someone in such circumstances is a hideous shock,” Allimann says. In these moments when “everything is difficult to understand”, most families prefer to refuse organ donation if they are unaware of the deceased’s wishes.

Hundreds waiting for organs

In Switzerland, where demand for organs outstrips supply, organ donation after death is governed by an explicit model of consent: those who have given their consent while still alive are deemed to be donors, with the family systematically asked for their opinion.

Swisstransplant, the national foundation for organ donation and transplant, believes such a restrictive approach exacerbates the shortage of organs that the country has long faced. Each week, an average of two people die because they have not received an organ in time.

The number of deceased organ donorsExternal link (around 150 per year, or 18 per million inhabitants) is rising but remains inferior to the demand. Almost 1,500 people are waiting for a transplant – a number which has risen by more than a third in ten years.

In addition, the number of organs transplanted from deceased donors declined from 500 in 2019, to 460 in 2020.

Behind European neighbours

Even before the Covid-19 pandemic, Switzerland was far behind Spain, the country which carries out the most organ transplants in the world, and behind several other European countries.

“We will never be able to save everyone, but we should be able to double the number of donors in Switzerland to arrive at a rate that is comparable to neighbouring countries – around 25 to 30 per million habitants,” argues Franz Immer, director of Swisstransplant. The official aim is to reach 22 by the end of 2021.

When can organs be retrieved?

Organs can be retrieved from people who are brain dead or have died from cardiac arrest, but only in an intensive care unit of a hospital. Some illnesses, like active cancer or septicaemia, are absolute contraindicationsExternal link. The state of health and the organ function are the determining criteria, not a person’s age. Nonetheless, according to Franz Immer of Swisstransplant, the high rate of donors in Spain is also linked in part to the fact that the country includes elderly donors, which is not the case more generally elsewhere in Europe.

As multiple awareness campaigns have not had the desired effect, a popular vote will decide whether to reform the model of consent. The project calls on Switzerland to renounce explicit consent in favour of presumed consent: it will be presumed that dead people would consent to organ donation unless they expressed their refusal while alive.

Proponents note that most European countries use the presumed consent model, which helps explain why their numbers are better.

“The rate of refusal is around 60% in Switzerland, compared with 15% to 20% in neighbouring countries,” says Immer. Among Switzerland’s neighbours, only Germany, which also practises explicit consent, has a lower donation rate.

Ethical concerns

In Switzerland those opposed to organ donation after death exist, but they are in the minority. When asked, between 80% and 90% of the population say they are in favour of organ donation. The specialists agree on the need to increase donations but underline the importance of framing presumed consent in an ethical manner.

“A good portion of the people who live in a system of presumed consent don’t know it,” notes Christine Clavien, head of teaching and research at the Institute for Ethics, History, and the Humanities at the University of Geneva. “So it’s not an informed consent.”

It is therefore important to be certain that donation corresponds with the wishes of the deceased. Clavien points to Belgium, where on reaching adulthood everyone receives a letter in which it is explained that they will be presumed as organ donors and can express their wish to the contrary on a dedicated website.

Another bone of contention is the place left for the family’s opinion. The Federation of Swiss Doctors (FMH) underlines that “the absence of expressed consent leaves a large margin of interpretation” and believes it to be “primitive” that loved ones have a “subsidiary right to opposition”.

In fact, no European country, even Spain, strictly enforces presumed consent by overriding the opinion of loved ones.

The Swiss government has developed an indirect counterproposal, which explicitly allows for a broad application of presumed consent: a person should make it known during their lifetime if they are opposed to organ donation and, if nothing attests to it, their loved ones will always be consulted.

Removing doubt

However, not everyone agrees that switching to a system of presumed consent will be decisive in increasing the rate of donation. The National Advisory Commission on Biomedical Ethics (NCE), of which Clavien is a member, recently made its opposition clear.

For the NCE, the higher rates of organ donations in other countries are more the results of a socio-political context and of social norms which are favourable to donation than just of the legislation. In Spain, “there is an ensemble of concomitant measures: medical teams are trained to have discussions, more pro-donation campaigns are carried out and so on,” she explains.

Some countries encourage people to donate by offering monetary incentives or by favouring declared donors if they themselves need an organ, as is the case in Israel.

The NCE prefers the system of obligatory declaration, which is in place in the United States and is being studied by Germany. Citizens must express their preference at certain moments during administrative life, such as when obtaining a driver’s licence, identity papers, or when taking out insurance.

Immer is not convinced by this method, but he says the most important point is to get people to express their position, whatever it is.

“I am a donor, and everybody is aware of it,” says Ruth Allimann. She has never regretted agreeing to the donation of Stéphane’s organs, but lived for a long time without knowing if it’s what he would have wanted. Until the moment, that is, when she finally found the courage to go through his possessions and discovered a donor’s card in a wallet.  

“It could have helped me if I had known that he had this card, but it is essential that people take the responsibility of telling their loved ones,” she says. “If I had refused and then discovered afterwards that he had consented, I would have been going against his wishes.”

(Translated from French by Sophie Douez, edited by Thomas Stephens)