Organ donation: explanation for next of kin
This information is intended for next of kin who have spoken with the doctor about organ donation. Read how the procedure works and what you can expect as next of kin.
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 futile, a conversation about stopping treatment will follow.
Only once the decision has been made to stop treatment and someone is medically eligible to be a donor, may the attending physician consult the Donor Register. They will then call the Dutch Transplant Foundation (NTS). The NTS checks the Donor Register to see what your loved one's wishes were.
Organ or tissue donation may only be started if there is consent. This means that the person is listed in the Donor Register as 'yes' or 'no objection'. Someone may also have registered that their family or a specific person should decide on this. In that case, donation can start after this consent has been received.
The hospital doctor always informs the next of kin about the outcome from the Donor Register. Are you a relative of the donor and are you absolutely certain that your loved one did not want to be a donor after all? And can you explain this 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 determined, or after the heart and circulation have stopped. Death is always officially determined.
What is brain death?
Brain death occurs after, for example, a fall, a car accident, or a brain hemorrhage. In brain death, all brain functions have ceased and can never recover. Once brain death has been determined, the following is certain:
- The functions of the brain, the brainstem, and the 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 moves 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 take in 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 that a patient is brain dead, a team of doctors performs a number of tests to determine brain death. These doctors belong to the patient's treatment team. They are not involved in the transplantation of the organs or with the patients waiting for an organ.
The Organ Donation Act states exactly which steps the doctors must follow to determine brain death. All hospitals follow this protocol. The intensivist or neurologist will explain to you what the different tests are and how this works.
Can someone also donate if they are not brain dead?
Sometimes a patient in the intensive care unit is not brain dead, but is so seriously ill that nothing more can be done to make them better. The treatment team then decides that continuing treatment no longer makes sense. This means they stop the ventilation and other machines.
To make organ donation possible, it is important to do this at the right time. The team discusses this with the next of kin and the coordinator. Organ donation is only possible if the patient dies within 2 hours after stopping treatment. 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 diseases they had in the past, and how good the organs still are. Also, due to illness, the stay in the intensive care unit, and the use of medication, organs may be less suitable for donation. Sometimes it only becomes apparent during or after the operation 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 drain 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 speak of diabetes.
In addition to insulin, the pancreas also produces digestive juices to digest our food. After pancreatic disease, it can be replaced by a pancreas from a donor.
On the waiting list for a pancreas
Liver
neutralizes toxic substances 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 a very serious heart disease.
On the waiting list for a donor heart
Lungs
The lungs provide oxygen to our blood. They also excrete carbon dioxide (a waste product). In patients with a serious lung disease, the body no longer receives 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 insufficiently 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 confirmed. It must also be investigated which people on the waiting list are a match for the organs.
How long does organ donation take?
All steps surrounding organ donation must be carried out carefully. 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 does not take place until the next day.
Usually, the cremation or funeral does not need to be postponed.
Who ensures that the donation procedure goes smoothly?
During an organ donation, an organ donation coordinator (ODC) ensures that the donation procedure goes smoothly. This coordinator comes to the hospital specifically for the donation.
They will explain how the donation process works, and you can go to them with all your questions. They also monitor that all examinations are carried out, ensure they have the donor's details, and arrange the time of the donor surgery in consultation with the next of kin and the doctors.
Usually, a different coordinator is present during this surgery. You can meet them before the surgery. The ICU nurse and intensivist are also present and can answer your questions regarding the removal surgery. You can be with your loved one until the surgery.
The surgery takes 3 to 6 hours.You decide for yourself whether you want to wait at 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 any special wishes for saying goodbye? 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 are a match for 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 into the system of the 8 countries in Europe that are affiliated. This way, no organs are lost. Sometimes organs also come from other countries for patients on the waiting list in the Netherlands. Eurotransplant monitors whether this remains roughly balanced.
How is the retrieval performed?
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 retrieval 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 consent has been given.
The surgeons remove the heart first. Then follow the lungs, small intestine, liver, pancreas, and kidneys. The kidneys can last longer without oxygenated blood than the heart. The heart only remains viable for transplantation for 4 hours.
Is anything other than organs removed?
To ensure an organ transplant is successful, more than just the organs need to be retrieved. For example, pieces of fatty tissue and blood vessels attached to the organs are also removed. These blood vessels are necessary to connect the organs to the recipient's blood vessels. Furthermore, pieces of the spleen are always removed.
These pieces are provided with each organ and used to test for antibodies against the donor's organ. Because every recipient's body is different, the exact amount of extra tissue removed to ensure a successful transplant can vary from donor to donor.
Why are medications administered?
During operations on a brain-dead donor, medications are sometimes necessary. Think of painkillers, muscle relaxants, or sedatives. This may sound strange because a donor has passed away. Because the brain is no longer functioning, the donor can no longer feel anything. The medications are still necessary, however, to maintain blood pressure or to prevent reflexes. Some reflexes occur independently of the brain.
What happens if the donor also donates tissues?
Tissues are generally less fragile than organs and can often be retrieved up to 24 hours after death. If the donor also donates tissues, these are therefore removed after the organs.
This is done by a different team that specializes in tissue retrieval. It is different if the donor donates heart valves. For that, the surgeon removes the heart during the donor operation.
After the removal
What if the retrieved organs are not suitable for transplantation?
Organs are retrieved for the purpose of transplantation. Sometimes, before or after retrieval, it turns out that an organ is not good enough for transplantation, for example, because the quality proves to be insufficient.
In that case, the organ may still be useful for research in the field of transplantation. This includes research into the composition of the organ or research into how organs can best be preserved.
This research only takes place if the organ donor has given permission for it. If this is not the case, the organ is placed back into the body if possible.
Can the deceased still be laid out after the operation?
It is possible to lay out a loved one 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 for this with the funeral director. They will then handle the further arrangements with the hospital.
After the operation, the skin may look pale. Your funeral director can remedy this with makeup. The surgical wound is carefully sutured after the organs are removed and covered with a bandage. With the right clothing (a T-shirt or a high-necked blouse), the bandage will not be visible.
If you wish to care for your loved one yourself after death, you can indicate this to the ICU nurse or the 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. You can discuss with them 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 have 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 additional costs the funeral director may incur because your loved one was a donor. The health insurers of the organ recipients pay these costs.
Thank-you letter
The recipient can send an anonymous thank-you letter to the donor's next of kin. This is often greatly appreciated. You will be asked in advance if the family wishes to receive such a letter.
More information
Magazine with stories
A free magazine for next of kin and recipients is published twice a year. It contains stories from next of kin and recipients.
Or request a paper copy viainfo@transplantatiestichting.nl
Support in processing loss
TheNational Support Center for Loss (LSV) supports people who are grieving the loss of a loved one. The LSV can answer questions about grief by phone and refer you to support in your local area.
Stichting Achter de Regenboog
Stichting Achter de Regenboog supports children and young people in processing the death of a loved one.
Questions about donation?
You can always contact the coordinator. Together with the intensive care team, they will support you throughout the entire donation process. This is also possible after the donation procedure.