Close to 1,200 people in Switzerland are waiting for an organ; around 100 die every year. Swiss donate far fewer organs than most other Europeans. A national study and the social media may help increase rates.
The study, initiated by the Federal Health Office and overseen by the National Committee for Organ Donation (CNDO), was designed to evaluate factors that contribute to the low donation rate. And a partnership with Facebook has demonstrated that it is possible to motivate people to order donor cards.
In 2011 the Federal Health Office launched a nationwide advertising campaign to increase public awareness of the fact that people in Switzerland can fill out a donor card stating whether they are – or aren’t – willing to donate their organs if they die. But a small survey conducted in 2012 by Swisstransplant, the organisation charged with organ allocation in Switzerland, found that only 50 per cent of people surveyed were aware of the ads.
Enter Facebook. In November 2012 it became possible for users in Switzerland to state on their timelines that they support organ donation and to follow a link to order a donor card from Swisstransplant.
“It was really amazing. In the first week, every minute a donor card was downloaded through Facebook from our website, and that was for ten days. We sent out 10,000 donor cards,” Swisstransplant Director Franz Immer told swissinfo.ch.
But Facebook can’t solve everything.
In January Swisstransplant released the CNDO study, “Swiss monitoring of potential organ donors”, conducted in Swiss intensive care units and accident and emergency departments. It was designed to estimate the number of potential donors in Switzerland and to investigate possible reasons for differences in rates between hospitals and regions.
The CNDO study found that refusals by people asked to donate their relatives’ organs had increased by ten per cent between 2008 and 2012, to 52.6 per cent. The average refusal rate in Europe is 30 per cent.
Switzerland’s donation rate –12.8 per million inhabitants – is one of the lowest in Europe, one third the rate in Spain (at 35.3 per million the highest in Europe) and one half the rate in France (24.8 per million). The study estimated that a rate of 36.5 per million is possible.
Swiss law
In many European countries, people have to state that they don’t want to donate organs (presumed consent). In Switzerland, since the revision of the transplantation law in 2007, people have to state that they do (explicit consent). It’s up to individuals to make their wishes known – for example, by carrying a donor card or by informing relatives, who are asked to make decisions on behalf of patients not competent to do so themselves.
In the spring the cabinet is expected to consider the issue of presumed consent and parliament will look at proposed changes to the transplantation law.
One change would allow physicians to ask families about donations before patients have died. Another would allow organ-sustaining procedures in donors before death.
Keeping a patient’s body functional in order to maintain organs before donation is controversial. In a 2012 article in the Swiss magazine Beobachter, patient advocate Margrit Kessler described doctors about to reanimate a clinically dead patient in order to take organs as bees swarming around the body. “Can we even speak of ‘death with dignity’ in this case?” she asked.
Even Trix Heberlein, president of the board of Swisstransplant, agrees that reinstituting presumed consent could be counterproductive, making patients and families more uncertain about donation.
“It’s important to us that decisions are not made that contradict the will of the patient,” she said.
Current status
The CNDO report was not able to identify why family members decide against donation, but it did find that the earlier families were approached, the more likely they were to deny a request for organ donation.
Deciding whether to donate a relative’s organs is a very difficult process for families, says Yvan Gasche, assistant director of the department of intensive care at the Geneva University Hospitals and vice president of CNDO. Decisions sometimes must be made by families at very short notice. “This is very disturbing and traumatising for them, especially if they didn’t discuss it beforehand,” Gasche said.
The study also found differences in the way the various hospitals and the six Swiss donation networks were organised, and in awareness of who can be referred as a donor, particularly among smaller hospitals.
“I think that at our hospital a number of processes will need to be improved,” says Roger Lussmann, head of the surgical intensive care unit at the St Gallen Cantonal Hospital and a board member of CNDO. “The head of the intensive care unit serves as the local coordinator for organ donation. That’s insufficient,” he said.
According to the transplantation law, cantons are responsible for implementing the measures required to promote organ donation and transplantation, including the appointment and training of staff responsible for detecting and referring potential organ donors.
To improve donation rates, the report suggested implementing best practices, financing local donor coordinators in intensive care units, and offering educational programmes for physicians and nurses.
Physicians are required by law to ask families about donation. An educational programme already exists to help prepare doctors and nurses for the task, helping them understand the mourning process and to examine their own views of organ donation.
Encouraging the public to discuss organ donation and to take a stand is one of Swisstransplant’s goals. “If everybody had a donor card – it’s not important if they are against or for, but that they decide – it would be a big relief for the person and for the families,” CNDO’s Gasche said.