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Table 3 Code book – with definitions

From: Decision making on organ donation: the dilemmas of relatives of potential brain dead donors

Theme Category Code interview Definition
Conditions Urgency Urgency Participant mentions that s/he had little time to decide on donation
Competence Emotions First reaction of participant on donation question, or participant mentions being overwhelmed by emotions, or participant mentions emotions due to the illness of deceased before the request was made
Mourning reactions Participant mentions mourning reactions such as being unable to understand information, not accepting the death etc.
Group Decision Composition and number Number of relatives, and which relatives, were present when the donation request was made
Agreement Whether the relatives reached agreement on donation or not, and how they discussed it to reach agreement
Ethical considerations Values Aid people Aid people, save people, give someone a better life
Body holds little intrinsic importance after death Utilitarian view of the body, believing that the body gives physical form to the self but is not an integral component of the self-identity
easy rescue He does not need his organs when he is dead, easy to give them to someone who does need them
Integrity Integrity of the body, protection of the body, no cutting in the body, keeping it whole
Meaning Donation gives at least some meaning to death, gives comfort to relatives
live on A part of the deceased one lives on in someone else
Reciprocity Indirect reciprocity refers to the notion that an individual is duty bound to help others as they themselves would want to be helped
Religious/transcendent Ideas on life after death, religious values on life and death
Motives Farewell It is more difficult to say goodbye for relatives when they cannot be present at the moment of visible death, a reason to choose for DCD instead of DBD. And it can take a long time for the eligible donor to become officially brain dead, prolonging the farewell
Funeral or burial rituals The organ removal leaves marks on the body, the procedure interferes with funeral or burial rituals
Waiting long procedure The donation procedure takes time when the family is waiting, it is a formal and technical procedure in times of grief. Or: there is more time for family to arrive and say farewell, accept the death of their beloved
Wish known (from register) It was his/her last wish so we should follow it. Registration in the donor register is the main reason for consent to donation
Wish unknown Relatives do not know what the deceased would have wanted, he was not registered, relatives do not want to decide for someone else
Wish family leading Participant leaves the decision to the relatives: ‘they have to live with it’
Convictions Contra donation Statements against donation in general and/or for participant himself without further motivation. And: no donation at all, also not receiving an organ himself
Life needlessly prolonged The life of the patient is needlessly prolonged to obtain organs, he has suffered enough
Organs special significance Participant makes an exception for organs with a special significance for him like the heart, eyes or skin
Premature death Participant mistrusts the doctors, he thinks they will not treat him well if he were registered as a donor or that organs are removed before death
Pro donation Statements in favour of donation in general and/or for participant himself without further motivation. For example: everyone should be registered as a donor
Unknown recipient Relatives do not want to donate since they do not know the recipient, his lifestyle and they cannot contact him.
Dilemma Dilemma Participant mentions different motives pro and contra donation which conflict with each other and balances them, or cannot make a decision, or remains ambivalent
Look back Decision - Evaluation Justification Participant explains how the decision was made, which considerations were taken into account and the way the decision was justified afterwards
Regret Participant mentions that he does (not) regret the decision and/or that he is proud of the decision and the way it was established. Whether the decision does justice to the wish of the deceased
Persistence (stability of the decision) Participant states that the decision to donate could have been different (without regretting the decision made)
Improvement/support Improvement suggestions Participant mentions improvements: they needed more information, more time to deliberate with others, more (empathic) support from HCP etc.; they did not know who to ask the question to
Need for counsellor others Participant mentions that he can imagine that other people might need counselling, or that he might have needed it if the situation was different (e.g. if they had not known de deceased’s wish, if the relatives had not agreed etc.)
Need for counsellor own Participant mentions that he would (not) have wanted counselling himself, or that he asked for support
Professions support Which profession should give which kind of support; whether they had/should have different roles in guiding the donation procedure: physicians, nurses, transplant coordinators, social workers, psychologists, hospital chaplains. Also: whether support from the latter profession was asked
Kind of support Tasks that the person who supports should have, such as: giving information, mediating between family members, creating time and space to think about the question, being available all the time