Organ donation: explanation for loved ones
This information is intended for loved ones who have spoken with the doctor about organ donation. Read how the procedure works and what you as a loved one can expect.
How do the doctors know what my loved one wanted?
If a doctor is convinced that your loved one can no longer recover and further treatment is medically pointless, a conversation follows about stopping the treatment.
Only when the decision has been made to stop treatment and someone is medically able to be a donor, may the treating physician consult the Donor Register. They then call the Dutch Transplant Foundation (NTS). The NTS checks the Donor Register for the wishes of your loved one.
Organ or tissue donation may only be started if there is consent. This means that the person is registered in the Donor Register with 'yes' or 'no objection'. Someone may also have registered that the family or a specific person decides on this. Then donation can start after this consent has been received.
The doctor in the hospital always informs the loved ones about the outcome of the Donor Register. Are you a survivor of the donor and are you very sure that your loved one did not want to be a donor after all? And can you explain that to the doctor? Then the donation will not proceed.
Determining death
Organ donation is possible if someone dies in a hospital due to severe brain damage and brain death has been established, or after the cessation of the heart and blood circulation. Death is always officially established.
What is brain death?
Brain death occurs after, for example, a fall, a car accident or a brain hemorrhage. With brain death, all brain functions have stopped and can never recover. Once brain death has been established, the following is certain:
- The functions of the cerebrum, brainstem, and medulla oblongata have failed
- There is no electrical activity in the brain.
- No more blood is flowing through the brain.
What does someone who is brain-dead look like?
In someone who is brain-dead, the chest still goes up and down. This is because they are on a ventilator. This machine blows air into the lungs. As a result, the lungs continue to absorb oxygen and the heart continues to beat. This ensures that they still have color and feel warm.
How is brain death determined?
When doctors suspect a patient is brain-dead, a team of doctors performs a number of tests to establish brain death. These doctors are part of the patient's treatment team. They are not involved in the organ transplantation or with the patients waiting for an organ.
The Organ Donation Act specifies the exact steps doctors must follow to determine brain death. All hospitals follow this protocol. The intensivist or neurologist will explain the different tests that will be performed and how this process works.
Can someone also donate if they are not brain-dead?
Sometimes a patient in the intensive care unit is not brain-dead, but so seriously ill that nothing more can be done to cure them. The treatment team then decides that continuing treatment is pointless. This means they will stop ventilation and other equipment.
To make organ donation possible, it is important to do this at the right time. The team will discuss this with the next of kin and the coordinator. Organ donation is only possible if the patient dies within 2 hours after treatment is stopped. After that, the quality of the organs decreases too much.
Which organs can someone donate after death?
A donor can donate these organs after death:
- the heart
- the lungs
- the liver
- the kidneys
- the pancreas
- the small intestine
What they actually donate depends on their age, what illnesses they had in the past, and how healthy the organs still are. Illness, time spent in the intensive care unit, and medication use can also make organs less suitable for donation. Sometimes it only becomes apparent during or after the surgery that the organs are not suitable for donation.
When does someone need an organ transplant?
Kidneys
The kidneys purify the blood, process and remove waste products, and remove excess fluid from the body. They also ensure the production of blood and maintain the chemical balance in the body. If the kidneys do not function properly, the body becomes poisoned. A kidney patient no longer needs dialysis after a kidney transplant.
On the waiting list for a donor kidney
Pancreas
The pancreas produces the hormone insulin. Insulin regulates the body's energy balance. If the pancreas produces no or too little insulin, we call this diabetes.
In addition to insulin, the pancreas also produces intestinal juices for digesting our food. After a disease of the pancreas, it can be replaced by a pancreas from a donor.
On the waiting list for a pancreas
Liver
renders toxic substances harmless and produces bile. Bile ensures that our intestines absorb fats better. The liver also produces important proteins. If the liver no longer functions properly, it can no longer perform these functions. The patient then needs a liver transplant.
On the waiting list for a liver
Heart
The heart pumps blood through the body. Someone is eligible for a donor heart if they have very severe heart disease.
On the waiting list for a donor heart
Lungs
The lungs provide oxygen in our blood. They also excrete carbon dioxide (a waste product). In patients with a severe lung disease, the body no longer gets enough oxygen. The organs can no longer do their work. Transplantation of one or two lungs is then the only solution.
On the waiting list for a donor lung
Small intestine
The small intestine extracts all nutritious components from our food. If the small intestine functions inadequately due to an intestinal disease, the patient needs a new piece of intestine.
What needs to happen before organs are removed?
Before organs can be removed, it must be examined which organs are still suitable for transplantation and death must be pronounced. It must also be investigated which people on the waiting list match the organs.
How long does organ donation take?
All steps surrounding organ donation must be done with care. Multiple examinations take place to see which organs are suitable for donation.
Organizing the donation and transplantation takes time. After the conversation with the doctor about organ donation, the donation itself usually only takes place the next day.
Usually, the cremation or funeral does not need to be postponed.
Who ensures that the donation procedure runs smoothly?
During an organ donation, an organ donation coordinator (ODC) ensures that the donation procedure runs smoothly. This coordinator comes to the hospital specifically for the donation.
He tells you how the donation will proceed and you can approach him with all your questions. He also ensures that all examinations are carried out, makes sure he has the donor's data, and, in consultation with the loved ones and the doctors, arranges the time of the donor surgery.
Usually, another coordinator is present during this surgery. You can meet him before the surgery. The ICU nurse and intensivist are also present and can answer your questions regarding the removal surgery. You can stay with your loved one until the surgery.
The surgery takes 3 to 6 hours.You decide for yourself whether you want to wait in the hospital during the surgery or go home. If you go home, you can arrange with the coordinator to be called immediately after the surgery. Do you have special wishes for the farewell? Discuss these with the coordinator.
How do the organs reach the right recipient?
The coordinator registers the donor with Eurotransplant. This organization then allocates the organs to the patients who need them most at that moment.
It is also assessed whether the organs match the recipient. This prevents the organ from being rejected after transplantation. Eurotransplant first looks for potential recipients in the Netherlands.
Is there no good match?Then Eurotransplant looks in the system of the 8 affiliated countries in Europe. This way, no organs are wasted. Sometimes organs also come from other countries for waiting list patients in the Netherlands. Eurotransplant ensures that this remains roughly equal.
How does the extraction work?
Two or more surgeons perform the surgery with care and respect for your loved one. They do this together with a surgical team, the so-called removal team. The donor surgery takes place in an operating room in the hospital. After the heart has stopped, the surgeons remove the organs one by one. This only concerns the organs for which permission has been given.
The surgeons remove the heart first. This is followed by the lungs, small intestine, liver, pancreas, and kidneys. The kidneys can last longer without oxygen-rich blood than the heart, which only remains viable for transplantation for 4 hours.
Is anything other than organs removed?
To make an organ transplant successful, it is necessary to remove more than just the organs. For example, pieces of fatty tissue and blood vessels attached to the organs are also removed. These blood vessels are needed to connect the organs to the recipient's blood vessels. Furthermore, pieces of the spleen are always removed.
These pieces are sent along with each organ and used for testing for antibodies against the donor's organ. Because every recipient's body is different, the exact extra tissue removed to ensure a successful transplant can vary per donor.
Why are medications administered?
In surgeries involving a brain-dead donor, medications are sometimes necessary. Think of painkillers, muscle relaxants, or sleeping aids. This may sound strange because a donor has passed away. Because the brain no longer functions, the donor can no longer feel anything. The medications are nevertheless necessary to maintain proper blood pressure or to suppress reflexes. Some reflexes bypass the brain entirely.
What happens if the donor also donates tissues?
Tissues are generally less fragile than organs and can often be removed up to 24 hours after death. If the donor is also donating tissues, these are therefore removed after the organs.
This is done by a different team, which specializes in tissue retrieval. It is different if the donor donates heart valves. For that, the surgeon does remove the heart during the donor surgery.
After the removal
What if the removed organs are not suitable for transplantation?
Organs are removed to transplant them. Sometimes it turns out before or after removal that an organ is not good enough for transplantation after all, for example because the quality turns out to be insufficient.
In that case, the organ may still be suitable for research in the field of transplantation. This includes research into the composition of the organ or research into how organs can be best preserved.
This research is only conducted if the organ donor has given permission for this. Is this not the case? Then the organ is placed back into the body if possible.
Can the deceased still be laid out after the surgery?
It is possible to lay someone out in a funeral home or at home after the donation. You can have your loved one brought from the hospital mortuary to the desired location. Make arrangements about this with the funeral director. They will then arrange the rest with the hospital.
After the surgery, the skin may look pale. Your funeral director can fix this with makeup. The surgical incision is carefully sutured after the organs are removed and covered with a plaster. With the right clothing on (T-shirt or high-necked blouse), the plaster is not visible.
If you want to care for your loved one yourself after death, you can indicate this to the ICU nurse or coordinator. If your loved one is also donating skin or bone tissue, this is not recommended.
What happens after the donation?
About 6 to 8 weeks after the organ donation, the ODC will contact you. With them, you can discuss how you experienced the donation process and ask any questions you may still have.
Donation and transplantation are always anonymous. The recipient does not know whose organ they received. And the donor's next of kin do not know who the organs went to. This is regulated by law.
If you wish, the organ donation coordinator can tell you:
- Which organs were transplanted?
- What is the gender of the donor?
- What is the age category of the donor?
No costs
As next of kin, you will not receive a bill for the donor surgery or the extra costs the funeral director has to make because your loved one was a donor. The health insurers of the organ recipients pay these costs.
Thank-you letter
The recipient can anonymously send a thank-you letter to the donor's next of kin. This is often greatly appreciated. It is asked beforehand whether the family wishes to receive this letter.
More information
Magazine with stories
A free magazine for next of kin and recipients is published twice a year. This contains stories from next of kin and recipients.
Or request a printed copy viainfo@transplantatiestichting.nl
Support with processing grief
The National Support Center for Grief (LSV) supports people who are grieving after the loss of a loved one. The LSV can answer questions about grief by phone and refer to help in your local area.
Stichting Achter de Regenboog
Stichting Achter de Regenboog supports children and young people in coping with the death of a loved one.
Questions about donation?
Then you can always contact the coordinator. Together with the intensive care team, he will support you throughout the entire donation process. This is also possible after the donation procedure.