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Overstretched intensive care leads to fewer donations

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Ninety thousand people die in Sweden every year. Despite 80 percent of Sweden’s population stating they would like to donate their organs after death, fewer than 200 people actually become organ donors each year. Why? This is due to, among other reasons, our limited legislation and organs not being made available because of a shortage of intensive care beds.

Simply dying is not enough to become an organ donor. You have to die in a particular way.  

“Death must take place while on a ventilator in hospital from what is colloquially known as brain death. If you die on the couch at home or in the emergency room after an accident you cannot become an organ donor”, explains Europe’s only professor in transplantation care, Anna Forsberg.   

In Sweden today, organs are transplanted from deceased donors who are brain dead. However, in many other countries organ donation is also possible when a person suffers circulatory arrest. A change to the law in Sweden so that donations could take place even in cases of circulatory arrest would lead to an increase in the number of potential donors. An increase in transplant recipients would, however, lead to an increased need for intensive care beds which are already in great demand. Anna Forsberg says it is unknown how many donors are not considered due to requiring an intensive care bed when somebody may need it whose life could be saved through advanced surgery or after an accident.
 
“It is completely absurd but triage happens all the time in healthcare. Here in Sweden we are among those with the fewest hospital beds per inhabitant in the whole world. The medical service has so few resources that patients are in competition with each other.”  

Only 1.5 million Swedes have actively made their wishes known in regards to organ donation. However, even if a person hasn’t made an active choice the legislation determines that people are donors unless they have explicitly opted not to be. Despite this, it is important for people to make a personal decision in order to avoid their loved ones having to make the decision.  

“Grieving family members often confuse organ donation with death. Of course, when the question is asked the person is already dead but the spontaneous response may be to say no in an emotional situation where what the person might really be saying no to is death itself.”

Anna Forsberg talks about warm and cold death. What can be confusing with warm death is that a person who is brain dead still looks like they are alive. What we experience with our senses therefore doesn’t match what the brain is expected to understand. Cold death is how a person looks after a donation which is how we would normally imagine people who have died.

Her own research is largely about life for the patient after the transplant. When a person receives a new organ they do not go from sick to healthy as is often the case with other types of surgery. Instead, lifelong medication is necessary to avoid rejection and that brings an array of side effects.
 
“We say that the patient should live a normal life after the transplant, yet at the same time we don’t know what is normal and what a reasonable degree of health is after years of life-threatening disease.”  

Anna Forsberg’s research group is first in the world with the publication of a study on how patients with lung transplants are recovering 5 years after their transplants.

“Only now do we understand what recovery involves. To disseminate this to transplant patients across the country, we’ve created a digital app so everybody can access the results and gain insight into how their daily lives are affected by the transplant.  It feels good to share research in such a concrete way – a bit like closing the cycle”, concludes Anna Forsberg.

 

FACTS ABOUT ORGAN TRANSPLANTATION

  • On average, one person dies each week while waiting for a transplant.
     
  • The oldest organ donor in Sweden was 83 years old. There is no age limit for organ donation. Instead, a differentiation is made between chronological and biological age.
     
  • Hearts are easier to transplant than the liver because hearts are connected to larger vessels.  
     
  • 180–200 liver transplantations are performed in Sweden each year.
     
  • The maximum time between donation and transplantation is 4 hours for a heart and 12 hours for a liver.
     
  • Research into relatives shows that family members who say yes to organ donation do not regret it. In contrast, it is those who say no who often regret it.
     
  • The Spanish model of transplantation medicine is world-leading. Spanish legislation allows for organ donation after circulatory arrest and has invested significantly in the education of healthcare workers in order not to miss any potential donors.