Organ donations too often fail due to a lack of consent. Introduction of the opt-out solution is urgently needed to reduce the gap in donor hearts and save lives / On Organ Donation Day

Frankfurt am Main/Bad Oeynhausen – Every year, several thousand donor organs are missing in Germany. This extreme shortage of donor organs is alarming. It is fatal for seriously and sometimes terminally ill children and adults who are hoping for a new organ in intensive care units and on the waiting list for a transplant. The situation has been tense for many years. And even after the launch of the organ donation register in March and despite the introduction of the extended consent solution in 2020, Germany has not found its way out of its blatant imbalance between donated and urgently needed organ donations: in 2023, 2,877 organs (heart, lung, kidney, liver, pancreas) were donated postmortem, while people were on the waiting list for 8,716 urgently needed organs (including hearts: 690). Attempts by the federal government to change this situation and bring about a noticeable increase in donor organs have so far failed. “Neither awareness campaigns nor the legally enshrined consent solution have been able to end this dramatic, ongoing shortage of donor organs. This means that patients will continue to die prematurely or suffer a noticeable loss of quality of life because they are permanently dependent on a heart support system due to a lack of a donor organ such as a heart or lung,” warns cardiac surgeon and transplant physician Prof. Dr. Jan Gummert, board member of the German Heart Foundation. “We continue to see the introduction of the opt-out solution – also due to the successes of other European countries following its introduction – as the decisive measure to finally improve the situation of organ donation in Germany in the long term,” emphasises the Heart Foundation board member and director of the Clinic for Thoracic and Cardiovascular Surgery at the Heart and Diabetes Center NRW, University Hospital of the Ruhr University Bochum, Bad Oeynhausen. “We expressly support the initiative of the Federal Council, which has called on the Federal Government through a motion for a resolution to include the opt-out solution in the Transplantation Act.”

The opt-out solution applies in over 20 European countries. Countries with opt-out solutions such as Spain, Austria and Croatia have significantly more organ donors than Germany. In Spain there are more than four times as many, in Austria and Croatia more than twice as many. (1)The opt-out principle states: Anyone who does not expressly refuse to donate organs is generally available as a donor, although relatives can veto the decision. The Heart Foundation offers a free organ donor card at www.herzstiftung.de/organspendeausweis

Number of donor hearts decreased

The German Heart Foundation and heart surgeons such as Prof. Gummert, who heads the largest heart transplant center in Germany, are extremely concerned about the low number of donor hearts in Germany, as this has been at a very low level for years. According to the German Organ Transplant Foundation (DSO), the number of hearts donated postmortem fell by 2.9 percent from 312 (2022) to 303 in 2023. The gap between the number of organs available for transplantation and the number of people with heart disease on the waiting list is correspondingly dramatic. In 2023, a total of 1,094 people were on the waiting list for a heart (of which 485 people were added to the waiting list in 2023), only 330 heart transplants were performed; a year earlier, there were 358 heart transplants. 32 heart transplants were performed on children under 16 years of age (2023). 27 of the 330 heart transplants were carried out thanks to imported hearts from countries in the Eurotransplant network – all countries with an opt-out solution. “Patients with severe heart disease and heart failure in intensive care units therefore remain on the waiting list without the urgently needed heart transplant,” explains Heart Foundation board member Prof. Gummert.

Organ shortage also due to lack of documented consent

In Germany, the consent solution applies. Organs or tissue may only be removed if the deceased person has consented to this during their lifetime. After the person’s death, the next of kin can give their consent on their behalf if the deceased did not make or document a decision during their lifetime. One problem that the DSO cites as the reason for the decline in organ donations: there is often a lack of clear consent from the deceased. And after death, it is also ethically very difficult to ask relatives directly about organ donation. According to a recent survey by the Federal Center for Health Education (BzgA), around 84 percent of German citizens between the ages of 14 and 75 are in favor of organ and tissue donation, and around 44 percent even document their willingness to donate in writing. (2)However, studies show that their wishes often remain unknown in hospitals “because ID cards or other documents cannot be found,” reports the DSO. A study in seven university hospitals found that written wishes were only available in ten percent of cases. (3)“If the deceased person’s relatives have to decide on the donation themselves in an already very difficult emotional situation without a written declaration of their wishes, they often refuse,” reports Prof. Gummert. According to the DSO, the lack of consent from relatives is one of the main reasons why a donation has not taken place among potential organ donors.

Organ donation register: “No significant effect because it is too complicated”

It remains to be seen whether the organ donation register launched in March can help reverse the trend and ensure an increase in donor organs. From July 1, 2024, removal hospitals should be able to search for and access declarations stored in the register online. Experts such as clinic director Gummert are skeptical, however. In his opinion, the register will have “no significant effect” on the number of donor organs, “because it is voluntary and too complicated,” says Gummert. The latter particularly affects people who are not very tech-savvy, as an ID card with online functionality and a PIN is required to enter the declaration of will. “What use is a register with only 20 percent completeness when the population decides for or against organ donation?” the heart surgeon points out. “Everyone should definitely continue to carry their organ donor card with them and also inform their closest relatives about their decision and its documentation,” recommends the Heart Foundation board.

“We need a cultural change in organ donation”

Germany, which has been importing more organs than it has exported for years, is benefiting from the relatively higher donation numbers from its neighboring countries. While 490 organs were imported from countries in the Eurotransplant network in 2023, these countries only received 384 organs from Germany (DSO). “This shows us that under the current conditions, the number of transplanted hearts can only be increased with the help of donor organs from abroad – all countries with an opt-out solution, mind you,” says Gummert. This organ import is morally questionable as long as Germany decides against an opt-out solution, says the heart surgeon. Germany is the only member country of Eurotransplant that does not have an opt-out solution. “Unfortunately, many parts of the population lack the understanding that an organ donation saves the life of another person after the death of one person. We therefore need a cultural change in organ donation in Germany. The opt-out solution would be a possible step towards this.”
(wi)

Literature:

(1) Source: IRODaT 2023, quoted from BZgA, accessed on 23.05.24: https://www.organspende-info.de/zahlen-und-fakten/statistiken/
(2) Zimmering, R. et al. (2023). Report on the 2022 representative study “Knowledge, Attitude and Behavior”, quoted from the DSO Annual Report 2023: https://www.dso.de
(3) Englbrecht JS.: Advance directives and consent to organ donation in seven university hospitals in North Rhine–Westphalia — a retrospective, multicenter analysis. Dtsch. Arztebl. Int. 2023; 120: 133–4. DOI: 10.3238/arztebl.m2022.0367, cited in DSO Annual Report 2023: https://www.dso.de

service

A Organ donor card of the German Heart Foundation can be obtained free of charge at www.herzstiftung.de/organspendeausweis (E-mail: [email protected]) can be requested.

Podcasts from the imPULS series:

“A new heart – why organ donation is a problem”: https://herzstiftung.de/service-und-aktuelles/podcasts/neues-herz-warum-organspende

“Heart failure: last resort heart transplant?”: https://herzstiftung.de/service-und-aktuelles/podcasts/letzer-ausweg-herztransplantation

Further information on organ donation is available at www.herzstiftung.de and www.herzstiftung.de/podcasts
Information about the organ donation register: https://www.organspende-info.de/organspende-register/
BZgA: www.organspende-info.de

Data & Facts

The Most common causes and indications for heart transplantation are:

  • serious heart muscle diseases (cardiomyopathies)
  • Coronary heart disease (CHD), the underlying disease of heart attacks
  • other chronic diseases of the cardiovascular system such as inflammation of the heart muscle (myocarditis).
  • Congenital malformations of the heart

The main causes for the development of severe heart failure in childhood, adolescence and young adulthood are end-stage heart muscle failure (e.g. after myocarditis, cardiomyopathies) and complex congenital heart defects in terminal cardiovascular failure.

For patients with severe end-stage heart failure, heart transplantation using a donor organ is the gold standard.

Heart transplantation is the better option than heart replacement surgery

Fortunately, around 60 percent of patients live for ten years or more after a heart transplant. Up to 30 percent are still alive with their new heart after 20 years. Thanks to constantly evolving and innovative medications, especially immunosuppressants, the long-term survival of heart transplant recipients is continuously improving. There is currently no complete artificial heart replacement for the complex human heart. The so-called artificial hearts (total artificial hearts, TAH) are still in the early stages of their use in humans, so neither medium-term findings nor long-term results are available.

Transplanting an animal heart (xenotransplantation) is currently not an alternative. Patients on the waiting list for a donor heart do have the option of a heart support system for the right, left or both ventricles (RVAD, LVAD, BVAD) until the heart muscle recovers or to bridge the gap until the heart transplant. However, life expectancy with a donor heart is significantly higher than with the most common heart support system, LVAD.