Table 4 Code book

Health care factors

Request factors

Surprised by bad news/timing of the request

How the timing of the donation request influenced the decision, ‘bad timing’, whether the participant was prepared for the request or surprised

14

Decoupling

Whether or not communicating the death of the patient and making the donation request took place in a single conversation or not, and how this affected the participant

11

Time to decide/time pressure

Enough time for the relatives to discuss donation or the feeling of time pressure

12

Information on patient before donation request

Whether the participant felt he was well-informed about the treatment and the treatment decisions that were made previous to the donation request. This affected the preparedness for the request and the trust the participant had in the care professional

6

Privacy

Where the request was made: in a separate room/in the hallway/next to the bed/etc. and how the participant felt about this

5

Behaviour of care professionals

Care for patient and relatives

Remarks on quality of care for patient and relatives of patient

13

(Supportive) relationship and communication with relatives; empathic request

Participant stated how he experienced the relationship with the care professionals during the stay at the hospital and whether this influenced the decision-making process; was the request done in an empathic way.

12

Critical events before request

Things that went wrong which caused stress or distrust for the family before the donation request was made: communication errors, transmission to other hospital/ward, messages of hope from healthcare professionals, long stay in the hospital before brain death

12

Pressure (time/direction decision)

Participant mentioned pressure by professionals to make a (fast) decision, or other factors that put pressure on the decision

6

Information (in) adequate/technical

The amount, the dosage and the quality of information on organ donation provided by the physician and whether the participant understood it well enough to make a good decision on organ donation.

12

Information about brain death

Whether the participant understood the concept ‘brain death’, how this concept was explained and whether he and other relatives understood that the patient was dead.

13

Relatives present at brain death determination

Participant and/or other relatives were (not) allowed to be present when brain death was determined. This influenced the acceptance and understanding of the death of the patient.

4

Relatives’ factors

Prior knowledge and opinions

Family culture (not) speaking freely about organ donation/death

The family members (did not) talk(ed) about organ donation, death, funeral, last wishes in daily life, before admission to the hospital. Quotes on how accustomed family members were to talk about difficult subjects. E.g. ‘we do not talk much at home’ or ‘we always had discussions on everything during dinner. ‘

14

Knowledge of organ donation via (own) experience or media

Participant knew about organ donation and/or the procedure before arriving at the hospital because a) he knew people who donated, received an organ or are on the transplant list; b) he heard of organ donation in the media or through education or information campaigns.

9

Knowledge of organ donation rules/procedures

Participant knew rules concerning organ donation (for instance: organ distribution system, no contact with receptor, no influence on destination organs etc.) and procedures (e.g. brain death notification, length of procedure etc.)

4

Knowledge of patients’ opinion about organ donation/registration

The participant (did not) know/knew the deceased’s preference and/or knew why/that the deceased had not registered himself as donor in the donor register.

12

Opinion about who has to decide

Opinion of relatives of deceased about who had the decisive say about the organs: the deceased or the relatives

5

Relatives’ opinion about organ donation/registration

The participant himself was (not) in favour of organ donation (with motivation) and was (not) registered in the National Donor Register. The other relatives were (not) in favour of organ donation and were (not) registered.

14

Relatives’ decision making

Relatives (not) prepared for donation request

Participant mentioned that they saw the donation request coming, or that they were totally surprised by it.

14

Relatives (in)competent to decide

Participant was (not) able to think clearly/was very emotional/did (not) get the information

9

Relatives (do not) support each other in decision making

Participants are the legally appointed representatives of the deceased. Other family members also play a part in the decision making process, in favour of or against the opinion of the participant. Participants can also have a caretaking role towards relatives, which created an extra burden.

12

Agreement between relatives about decision

How relatives reached agreement on organ donation or not.

13

Number of relatives who have to decide

Number and composition of relatives present at donation request conversation and/or involved afterwards in the decision-making process on organ donation

14

Option of DCD instead of DBD

Participants made a choice for DCD instead of DBD because they wanted to be present at cardiac arrest or did not want to wait long(er) for a DBD-procedure

14

Evaluation decision (process)

Evaluation of the decision and the decision process

(No) regret

Participant mentioned that he did (not) regret the decision and/or that he was proud of the decision and the way it was made. The decision did justice to the preference of the deceased.

14

Decision could be otherwise

Participant stated that the decision to donate could have been otherwise (without regretting the decision made).

9

Improvement suggestions

Participant mentioned improvements: they needed more information, more time to deliberate with others, more (empathic) support from care professionals, they did not know to whom they could address questions etc.

13

Need for support

Participant mentioned that he would (not) have wanted counselling himself, or that he asked for support. Participant could imagine that other people might need counselling, or that he might have needed counselling if the situation had been different.

12