Background
Attitudes towards opt-out consent
Method
Study procedure
Study recruitment and inclusion
Questionnaire participants
Qualitative free-text responses
Data preparation and analysis
Results
Participant characteristics
Opt-in (n = 646) | Deemed consent (n = 205) | Not sure (n = 40) | Opt-out (n = 32) | |
---|---|---|---|---|
Age (SD) | 38.38 (12.04) | 43.97 (12.76) | 46.47 (12.46) | 47.47 (16.22) |
Gender | ||||
Male | 98 (15.2%) | 53 (25.9%) | 11 (27.5%) | 7 (21.9%) |
Female | 540 (83.6%) | 150 (73.2%) | 29 (72.5%) | 24 (75%) |
Othera. | 8 (1.2%) | 2 (1.0%) | 0 | 1 (3.12%) |
Education Level | ||||
Lower Education | 277 (42.9%) | 90 (43.9%) | 20 (50.0%) | 16 (50%) |
Higher Educationb | 369 (57.1%) | 115 (56.1%) | 19 (47.5%) | 16 (50%) |
Employment Status | ||||
Employed | 464 (71.8%) | 145 (70.7%) | 27 (67.5%) | 17 (53.1%) |
Unemployed | 20 (3.1%) | 5 (2.4%) | 2 (5.0%) | 0 |
Student | 94 (14.6%) | 20 (9.8%) | 2 (5.0%) | 4 (12.5%) |
Retired | 27 (4.2%) | 21 (10.2%) | 5 (12.5%) | 9 (28.1%) |
Other | 40 (6.2%) | 12 (5.9%) | 4 (10.0%) | 2 (6.3%) |
Religious Beliefsc | ||||
No Religion | 350 (54.2%) | 107 (52.2%) | 18 (45.0%) | 14 (43.8%) |
Christian | 266 (41.2%) | 86 (42.0%) | 21 (52.5%) | 16 (50.0%) |
Roman Catholic | 3 (0.5%) | 1 (0.5%) | 0 | 0 |
Jewish | 2 (0.3%) | 1 (0.5%) | 0 | 0 |
Other | 25 (3.9%) | 10 (4.8%) | 1 (2.5%) | 2 (6.2%) |
Organ Donor Status | ||||
Yes | 571 (88.4%) | 107 (52.2%) | 6 (15.0%) | 4 (12.5%) |
No | 35 (5.4%) | 72 (35.1%) | 31 (77.5%) | 28 (87.5%) |
Not Sure | 40 (6.2%) | 26 (12.7%) | 3 (7.5%) | 0 |
Overview of key themes
Donor Choice | Themes | Sub-themes |
---|---|---|
Opt-in | 1. My choice is explicitly clear and unequivocal |
- My wishes are set in stone
- Reduces family distress
- Protection against family interference
|
2. My organs could save lives |
- Dead people don’t need organs
- It’s just the “right thing to do”
| |
3. Reciprocity - If willing to receive I should be willing to give | (No sub-theme) | |
4. Personal experience of donation | (No sub-theme) |
Donor Choice | Themes | Sub-themes |
---|---|---|
Deemed Consent | 1. The effortless choice |
- I’m lazy, and this means less hassle
- It saves me a difficult choice
|
2. My organs won’t be any good | (No sub-theme) | |
3. I want to be an organ donor |
- No need for organs when you’re dead
- Reciprocity
- Personal experience of donation
|
Donor Choice | Themes | Sub-themes |
---|---|---|
Not Sure | 1. General uncertainty |
- I’m still not sure I want to be a donor
- Medical uncertainty
|
2. The need for more information | (No sub-theme) | |
3. Control over the organs being donated | (No sub-theme) |
Donor Choice | Themes | Sub-themes |
---|---|---|
Opt-out | 1. Medical mistrust |
- What if I’m not dead?
- Reduced lifesaving care
|
2. A violation of bodily integrity |
- A desire to remain whole
- Organ donation damages the body
- A barrier to a peaceful passing
| |
3. The State has no right to assume consent | (No sub-theme) |
Themes from opt-in respondents
Theme 1: my choice is explicitly clear and unequivocal
I wouldn't want any confusion about my intentions to donate my organs after I die so I would opt-in so it was conclusive proof. (Female 28 years)
A few participants who plan to actively opt-in perceived opt-out legislation as a threat to their individual responsibility and choice. In the following excerpt, automatically presuming consent for organ donation was thought to indicate the state’s ownership of the body after death. Therefore, the process of actively registering an opt-in decision was viewed as a way of protecting their autonomy and right to decide.Providing no objection is not actually consenting to donating especially if people are unaware of the system, I think it’s safer to opt-in so it is definitely my choice. (Female 20 years)
Before organ donation can proceed, the eligible donors’ next of kin are approached and consulted during the donation decision-making process. Participants expressed that by actively opting-in to the donor register and thereby clearly indicating a preference to donate, potential uncertainty and confusion regarding their wishes would be minimised. It was hoped that a recorded informed decision would ameliorate distress when newly bereaved families are confronted with the emotive decision to donate their loved one’s organs (sub-theme 2).I do not believe that my body belongs to the state and as such I want to decide what happens after death. (Male 39 years)
I would prefer this to be a conscience [conscious] decision on my part and not something left to the state. Making arrangements myself would also grant some comfort to my family to know that the harvesting of my organs was something I wanted and not something which was decided for me. (Male 30 years)
Some participants expressed concerns that members of their family, who “don’t like the idea” of organ donation, may potentially disregard their wishes and overturn their decision. Therefore, for these participants, actively opting-in to the register was a method of safeguarding their choice and preventing potential family interference after their death (sub-theme 3).I would still like to be perceived as an active organ donor, indicating it was my own choice so that my family does not have to make any difficult decision in such difficult time. (Female 32 years)
I want there to be no confusion on my death, and I do not want my family (some who do not hold my views) to be upset by, or interfere in my decision after death. (Female 53 years)
I want to donate and think the option of “deemed to give consent” is wishy washy and family members could argue against it, saying you didn’t know. I want my choice to be clear. (Female 41 years)
Theme 2: my organs could save lives
What is the point in letting perfectly good organs rot away inside a dead body when they could be used to save lives? I see it as the same principle as taking things you don't need to the charity shop. Why keep it if you don’t need it but it could really benefit someone else? (Female 33 years)
Some participants also expressed the view that ethically, donating their organs after death is simply “the right thing to do” (sub-theme 2). For some, donating organs after death represented their last act of kindness that was somewhat expected as part of their civic and societal duty.Personally, I just think that it makes sense to donate healthy organs when you can no longer use them yourself. We make a conscious effort to recycle paper etc. so why should it not make sense to recycle valuable organs? (Female 20 years)
I believe it would be the most ethical choice, as I would be maximizing my utility to my society through allowing my organs to be given to those who need them most. (Male 24 years)
While, others viewed the act of organ donation as a method of balancing out any negative actions that may have occurred during their lifetime.I would like to be able to help someone after my death if I can. Organs are obviously not needed after death it seems like the obvious socially responsible action to take. (Female 52 years)
You’re doing a good thing when you're dead. It balances the bad things you've done when alive. A bit. (Male 44 years)
Theme 3: reciprocity - if willing to receive I should be willing to give
I think it should work like a bank if you don't put anything in then you shouldn't be allowed to take anything out. I believe every person who is ABLE to opt in should and those who simply don't fancy it should not be allowed an organ if they find themselves in need of one. If a person cannot donate on genuine medical grounds then they should be allowed to receive an organ if needed. (Female 39 years)
If I or one of my children needed an organ I would hope there would be a donor for us, therefore, I expect any of us to be a donor for any other human being in need or an organ. It’s an equalities issue as well as a humanity and compassionate issue. (Female 47 years)
Theme 4: personal experience of donation
My mum, uncles and papa have all had or having a kidney transplant! My mum had hers 8 years ago and seeing how it's not only changed my life and my dads, but also hers and it’s amazing to see her healthy again! (Female 23 years)
My dad needed a liver transplant and I was going to be a “live donor” We had to wait till he was strong enough for the operation but unfortunately he died before we could complete it. Organ donation is giving someone a second chance. (Male 36 years)
When my Grandfather passed away, he helped 5 different people from donating organs. This has made me aware of the importance of donating organs and the great difference that it can make for others. (Female 21 years)
Themes from deemed consent respondents
Theme 1: the effortless choice
I'm happy to be opted in without having to fill out any paper work. I hate paperwork so the less I have to do, the better! (Female 43 years)
Deemed consent was also regarded by some participants as a way of indicating a desire to be an organ donor without the need to make a challenging or emotive decision (sub-theme 2). At times, participants described general support for organ donation yet, reported the thought of organ donation to evoke unease and stated fears of “being cut open after death”. For these participants, deemed consent is considered a way of indicating their underlying preference to donate whilst, avoiding barriers that may have previously prevented these participants from registering an active opt-in decision.I'm rather lazy and so wouldn't want to have to ‘do’ anything! Besides which I'm happy to donate my organs or whatever's left of them. (Female 28 years)
I’m not against them using my organs after I die but I don’t really want to volunteer for it or anything. (Female 20 years)
Opting in means confronting your own mortality, general support for the principal of organ donation and not wishing to confront your own mortality means option 3 [deemed consent] satisfies both. (Male 55 years)
Whilst I don’t want to think about my organs being used or being cut open after death I also think if my organs could be used to save someone that’s acceptable. (Female 50 years)
Theme 2: my organs won’t be any good
I would happily opt in but due to a medical condition, I understand they cannot be accepted. I won't actively opt out & leave it to the doctors to decide whether they can use anything. (Male 57 years)
Due to being a smoker and overweight I have thought that most of my organs would be of no use. I have no objection to my organs being used if required. (Female 35 years)
Theme 3: I want to be an organ donor
I choose it as I have no longer any need for these organs when I'm dead so someone else should benefit from my life - goodness knows I've done bugger all else with it, this is my tiny contribution to humanity. (Female 42 years)
For some, the decision to become an organ donor was driven by the concept of reciprocity. These participants, similar to those in the opt-in group, described feeling duty bound to agree to be an organ donor as they would accept an organ if they or someone close to them ever required a transplant. Therefore, participants felt it would otherwise be “selfish” not to agree to donate (sub-theme 2).Why should we take valuable organs with us when we die, when there are still people who are fighting to live, needing an organ? Organ donation is an amazing thing. (Female 25 years)
I'd want an organ if I needed it, so would have to agree with donation. (Female 39 years)
In a similar way to the opt-in group, some participants reflected on their own personal experience of family members whose lives had been transformed through organ donation as their motivation for becoming an organ donor (sub-theme 3).I would hope an organ would be available if myself or any friend or family needed. I therefore feel I should be prepared to donate my own organs. (Female 36 years)
My dad waited 3 years for a kidney transplant it transformed his life when he received it. Another friend’s husband had a heart transplant over 20 years ago and he’s still living a full life- it is an honor to help others live full lives once mine ends. (Female 43 years)
My father had a heart transplant and would not have survived without the selflessness of organ donors. (Female 33 years)
Themes from not sure responses
Theme 1: general uncertainty
I have been thinking about this for many years and am yet to decide what route I'd like to take. (Female 29 years)
It’s a big decision and not one that I have ever been confident about making … (Female 51 years)
For some participants, pre-existing medical conditions or episodes of physical illness contributed towards uncertainty around the suitability of their organs for use in transplantation. This led to some individuals reporting concerns about transmitting illness’ or poor quality organs to the recipient (sub-theme 2).Still really unsure as to whether or not I'm 100% committed to donating organs. (Male 40 years)
I do not think I am able to donate as I previously had skin cancer. If it would be permitted I would be happy to select opt-out system. (Female 53 years)
I have experienced a 2-year period of illness diagnosed as Chronic fatigue syndrome, as I do not know the cause I would not wish others to experience this due to any donation of my organs or blood. Until such times as I can be assured that such would not be the case I would not be happy to donate. (Male 57 years)
Theme 2: the need for more information
Don’t know enough about organ donation. (Male 49 years)
Really don't have enough information, but would like to have more information about this. (Female 42 years)
Theme 3: control over the organs being donated
I think not sure covers it. I think there are certain organs I wouldn't want to donate. (Male 43 years)
I would like control of which organs are used. (Female 42 years)
Opt-out themes
Theme 1: medical mistrust
I am scared that there would not be enough checks that I was really brain dead before my organs were removed. (Female 61 years)
I have no wish to be “kept alive” on a ventilator until my organs are taken out for transplantation on the basis that some doctor has declared me to be “brain dead”. (Female 65 years)
I have a cynical approach to the care an organ donor would receive in the event of life threatening injuries as oppose to a non-donor in the same position. (Female 44 years)
Theme 2: a violation of bodily integrity
I was born with them I would like to die with them. (Male 29 years)
I just want to go out of the world the way I came in. (Female 47 years)
Just do not like the idea of being cut open after death. (Female 24 years)
Individuals who plan to opt-out viewed organ donation as incongruous to a peaceful passing (sub-theme 3). Throughout, participants expressed distress at the thought of unnecessary medical interventions, such as the use of mechanical ventilation during their death. Participants wanted their death to be a peaceful and natural process; organ donation, however, was believed to delay and interfere with deaths natural course.Simply do not wish to be used for any reason after death, put to rest with no damage to body. (Male 57 years)
I find it totally gruesome and weird. Let nature take its course and leave things as they are. (Female 21 years)
I have no wish to be “kept alive” on a ventilator until my organs are taken out for transplantation on the basis that some doctor has declared me to be “brain dead”. (Female 65 years)
Theme 3: the state has no right to assume consent
I am a firm believer in individual responsibility and object to the Government making assumptions on my behalf. (Female 82 years)
The creation of an opt-out system is inherently wrong in my opinion. The rational conclusion of such a policy is that the state has authority and ownership over your body and organs without ever getting consent. (Male 22 years)
If I donate my organs it’s a gift. If you take them it’s theft. My body belongs to me. It does not belong to the state to do with as it sees fit. I am a registered organ donor. I will not be if it goes to opt out. (Female 60 years)