Regulation of organ donation may differ in different countries and the principles demonstrated here are due to the Swedish law and regulations in Sweden. Please check carefully legislation and rules in your own country. Brain herniation can be caused by a number of factors that cause a mass effect and increase intracranial pressure (ICP): these include traumatic brain injury, intracranial hemorrhage, or brain tumor.
When a person dies in such manner that organ donation is possible, it is the health service’s duty to investigate the donation will of the deceased person (SOSFS 2009: 30, SFS 1995: 831 Law on Transplantation).
The transplantation law is based on “presumed consent”, that is, if the patient did not express himself negatively to the donation of organs or tissues after his death, then it is assumed that he/she was positive to donate. The will of the deceased may have been conveyed through
- Registration in the donation register
- Donation Card
- By communication to their relatives
All three ways are equally important. It is the last announced will that applies. It is the responsibility of the responsible physician to find out which will express the last message announced. Data from the donation register can be obtained from the transplant coordinator after the breakpoint decision is documented in the journal (SFS 2018: 307). If the patient’s will is known, it should be respected. Relatives have no legal right to change the patient’s decision.
- If the patient’s will is unknown, one should try to find out the deceased’s attitude through conversations with the relatives (interpretation of the willingness to donate).
- If there is conflicting information about the patient’s will, donation cannot be performed.
- If it remains unclear about the patient’s will, the loved ones should be informed that donation will be made if they do not oppose the procedure (presumed consent). The relatives in this case have a right to veto and must be given a reasonable time to consider it.
The relatives may in these cases also oppose donation by individual bodies.
- If the related parties disagree about the right of veto, donation cannot be carried out.
- If the patient’s will is known and no related party can be reached/no related party exists, donation can be carried out.
- If the patient’s will is unknown and no related party can be reached
- /no related party exists, donation cannot be carried out.
Related concept (SOSFS 2009: 30)
The term “related party” usually refers primarily to:
- Husband and wife
- Registered partner
- Children, parents, siblings
- Close friend, neighbor
- Good man
There may also be cases where a close relative, whom the deceased has not had any contact with for a long time, should not be considered related.
If the patient is a foreign citizen, the same rules apply as for a Swedish citizen when death occurs in Sweden.
Which related parties must be contacted?
It is enough that one of the relatives is informed. This, in turn, is responsible for how contacts and consultation with other related parties take place.
What happens if you cannot find any related parties?
Although many people live as a single person, it is seldom that they completely lack someone who is close to them. The law states that the persons who have been close to the deceased must be informed of the intended intervention, but there is no prohibition on donation from a person who completely lacks related parties, if his will can be considered clear. This means that if a person has made a positive opinion and one can consider it unclear that there are no persons who “have been close to the deceased” then donation is possible according to the Swedish Transplantation Act.
Conversation with related parties
The ICU doctor (intensivist) is responsible for investigating the willingness to donate. It is often most practical to do this during daytime and continuity is important. The responsible nurse and preferably the assistant nurse must participate in the conversation in order to be able to retell the information to related parties on an ongoing basis and provide support. Sometimes the question of the possibility of donating the loved ones is raised early in the process. Otherwise, the issue of donation will vary from case to case. After the new constitution entered into force on May 25, 2018 (SFS 2018: 307), it is legally possible to make a complete investigation of the willingness to donate (register, donation card, family conversation) after the breakpoint conversation is documented in the journal. However, when it is appropriate to raise the donation question in each individual case, it may vary. It is important that the relatives have had time to understand what has happened, what medical measures have been made to try to save their relatives and that they have had time to accept the death before the donation question is discussed.
It is the task of the ICU doctor to offer the opportunity for donation. It is important that the loved ones understand the meaning of the word donation, that it can be life-saving for other people and that a donation operation is performed dignified and with the same routines as an operation on a living patient.
Of course, how to inform relatives depends on both the individual case and their own experience. It is often advisable to start with the information that the patient “has a serious brain injury and is deeply unconscious without reactions”. The wording then varies, for example: “We suspect that the blood supply to the brain has ceased. We will now do thorough investigations to find out if it is so ”. Then we try to explain what it means, perhaps with some of the following support words: “brain swelling, no blood flow to the brain, lack of oxygen, brain has ceased to function”. One can mention the word “total brain infarction” and explain its meaning, i.e. that means that the person has died if total brain infarction can be found. You can also supplement the information with an illustration. “If you die with ongoing respiratory treatment, it is an opportunity to donate organs and help other people”.
It is important to make sure that the information has reached the related parties. Repeat the information several times, try to vary the expressions. It is valuable if one can establish a dialogue. The hospital church and/or the curator can be helpful both during the conversations with related parties regarding donation and after a possible donation.
Brain herniation can be caused by a number of factors that cause a mass effect and increase intracranial pressure (ICP): these include traumatic brain injury, intracranial hemorrhage, or brain tumor.
Identify a possible Organ donor
- Severe newly developed brain injury and
- Ventilator treatment (artificial ventilation) and
- GCS < 4
- Loss of at least one cranial nerve reflex
Suspected brain herniation – Identify potential donor
If it has not already happened, this is where the breakpoint decision is often taken. The decision is documented in the medical record. Breakpoint decisions with relatives are communicated as soon as possible.
Investigation of the willingness to donate organ
Appropriate time for investigation of the willingness to donate (donation register + donation card + calls with relatives) varies. In Sweden since May 2018 (SFS 2018: 307), after documented breakpoint decision (ie before the patient is declared dead), it is possible to search for known will in the donation register.
It is often useful with repeated family conversations. Help can be obtained in the investigation of the donation will. Always have a nurse, preferably also an assistant nurse and younger colleague with. Leave phones aside. When the donation will is ready, fill in the “Medical record for organ donation of the deceased”.
The important questions are:
- What does “donation” mean?
- Do the relatives understand?
- It is about saving lives!
- Do the relatives know the will of the deceased? Can they interpret it?
It is the deceased’s will that applies. “Presumed consent” applies if the will is unknown. Legally, relatives can only inhibit when the willingness to donate is unknown.
Begin donor characterization. Notify the transplant coordinator (nurse) of the current telephone number. The coordinator usually asks about: age, gender, length, weight, blood group, diagnosis, previous diseases, malignancy, abuse, smoking, risk group for blood contamination, hemodynamics, time of CPR in cardiac arrest, ROSC time, respiration, lab. parameters and more.
Clinical diagnostics x 2
Inform relatives about why diagnostics are done. Relatives may be present. Inform about spinal reflexes before examination. Bring in your younger colleagues? Create tranquility when performing clinical diagnostics.
Always perform clinical diagnostics x 2 even if it becomes incomplete and later cerebral angiography is planned. Recruit the lungs after the apnea test! There are several pitfalls in the clinical diagnostics of brain death eg. facial trauma, facial palsy, high cervical spine injury, pacemaker, sick sinus syndrome, chronic hypercapnia … contact the organ donation responsible doctor when needed for consultation.
Cerebral angiography x 2 on certain occasions
It is necessary on the following occasions:
- Metabolic or pharmacological effects (note liver/kidney failure)
- Body temperature < 33 degrees Celsius
- Total brain infarction for unclear reasons. Includes posterior shell pit processes and sometimes cranial symptoms.
If the patient comes from another hospital, check the following (see current guidelines):
- That two clinical death diagnoses have been completed.
- That relatives are informed about why the patient is moved and that the investigation of the patient’s donation will be completed.
- That the police are contacted in cases where it is relevant. See below.
Join the angiolab after cerebral angiography # 2 and write on the protocol after image demonstration of X-ray physician. Fill in the deadline for the explanation of the clinical diagnosis protocol.
Declaration of death
- Fill in the death certificate in the medical records, print and sign. Note in the medical record date and time of death declaration. Notify relatives that the patient is declared dead.
- Decide whether the police need to be contacted (see below).
- Give a single dose of cortisone (Solu-Medrol) 15 mg/kg iv (max 1 g) and insert/change antibiotics to broadspectrum AB such as to meropenem 0.5 g x 3 iv.
Continued investigation if the patient is a suitable donor
- Complete donor characterization
- Continuous contact with the coordinator on the current telephone number. Notify all changes in status. Careful review of donor characterization with coordinator.
- Transplant surgeon finally determines whether the patient is medically appropriate for organ donation. There are few absolute contraindications.
- Note. Ask the coordinator so you know before the relatives what “tissue for other medical purposes” means.
Police contact if needed
At the following deaths the police department must be contacted:
- If a death has or may have been caused by external causes (injury or poisoning) by accident, suicide or suspected crime.
- If a death can be suspected to be related to errors and omissions in the health care system.
- It is the police who decide on forensic autopsy and, together with forensic medicine, if there are obstacles to organ donation.
- Daytime contact the “Death Investigation Group” within the police force and on-call Police Commissioner.
Notify relatives if the patient is a suitable organ donor
If the patient is not a suitable donor: explain why (medical or police obstruction).
If the patient is the appropriate donor:
- Inform about possible further investigations that can change the decision on medical condition, the transplant surgeon makes the decisions. Inform that the investigations take time and consider the 24-hour rule.
- Inform about forensic autopsy
- Do not forget to ask if “tissue for other medical purposes” may be taken care of.
- Inform and recommend resignation at ICU after the donation operation.
- Inform that relatives may be called to follow-up meeting.
Referrals for organ investigation
The intensivist write all referrals for organ investigation according to the surgeon’s wishes. Invoice responsibility is normally the department of surgery.
Sampling is done according to routine memo on Donation/Sampling.
Note. Referral for coronary angiography may be sent in electronic referral management systems. Call the PCI lab. Don’t forget that eye corneas can be donated even if the other organs are not medically appropriate. Call the Corneal Bank on tel: xxx (possibly answering machine) and leave a message.
Make sure all necessary forms and documents are completed
- Medical records for donation procedures on the deceased
- Donor characterization
- Clinical diagnostics
- Cerebral angiography (handwritten protocol)
- Proof of death