Table of Contents
Overall, the #options survey received 5789 responses from NHS staff. The COVID-19 pandemic further hindered participation from NHS organisations in North Thames, with the majority of respondents from the NENC (86%). Of those who responded, 1404 (24%) left 1657 open-ended responses for analysis. The question about discussions with family attracted the most responses, accounting for 66% of responses (yeah = 1088), followed by those opposed to the bill at 19% (yeah = 316), and 15% needed more information (yeah = 253). Responses to the opposition to the bill question contained the most information and therefore provided the richest data. Across the three questions, there were six main themes and 22 subthemes (see Table 1). Given the large number of open-ended responses, there were many quotations with overlapping themes and subthemes, indicating the multifaceted nature of individuals' opinions.
Respondent characteristics
#options Compared to the overall survey respondents, the open-ended response group contained proportionally more men (21% vs. 27%), fewer women (78% vs. 72%), and slightly more 18-24 year olds (7% vs. 8%). There were 5% more people aged 55 and over in the open-ended response group, while all other age groups were 2-3% lower compared to the overall group. Additionally, the open-ended response group was more ethnically diverse than the overall group (6.9% vs. 15.4%) and had a higher representation of all specified religions (3.9% vs. 7.3%, respectively).
Question 1: I am against this law. Can you tell me why you are against this law?
Of the three questions, this was the one most frequently answered by men.yeah = 94, 30%), and 55 years or older (yeah = 103, 33%), ethnic minority respondents (yeah= 79, 25%). Subset analysis of place of employment revealed that 27% were from transplant centers (yeah = 84), 8% were mental health trusts (yeah = 26), 4% from the Ambulance Trust (yeah = 14).Thematic analysis revealed four main themes and 12 subthemes from the responses, with the predominant theme being the perception of loss of autonomy.
Theme 1: Loss of autonomy
The reasons for the loss of autonomy of the respondents were categorized into four sub-themes. First, questioning the nature of informed consent, and second, people's perception of legislative changes. One respondent stated that individuals “I was fully aware and informed.” [R2943] To consent to organ donation, an individual must give their consent. However, one respondent stated that he or she believes that an individual must give their consent. “do not have [been] Well informed” [R930] therefore “If people are unaware of it, how do they choose what happens to their organs?” [R1166]The awareness of change “Living in the shadow of COVID-19” [R4119].
Additionally, there were concerns, particularly regarding the means for recording the decision to opt out. “I'm not tech savvy” [R167], “Homeless” [R5721], “Vulnerable” [R4553]and “Elderly” [R2155]Thus, it deprives the individual of his or her right to have the decision recorded because he or she is at a disadvantage.
Finally, respondents expressed concern about a move towards an authoritarian model of state ownership of organs, which would see the state own organs and “harvest”Some people donate human organs through deemed consent and, as a result, decline to become donors. “I am furious that the government has decided to allocate my organs as theirs. They are not theirs, they are mine to give. I have withdrawn from being a long-time organ donor.” [R593].
Theme 2: Results
After giving their reasons for opposing the change in the law, respondents further discussed what they thought would happen as a result of opt-out laws, focusing on trust. Respondents cited a lack of trust in the system. “I don't trust the British government.” [R5374]Surprisingly, some cited a lack of trust in health care workers. “Don't trust doctors when it comes to organ donation” [R3010],There is also a risk of undermining public trust. “This puts NHS organ donation in direct competition with the public.” [R1237].Respondents further believed that the change in the law would lead to an increase in mistakes, such as organ removal against people's will, due to presumptions. “We can't be confident that mistakes won't be made when we appeal and that it won't be dealt with or handed over appropriately.” [R3018].Ultimately, this change is expected to result in the following: “More unrest” [R587],For families already grieving.
Theme 3: Legislation
Respondents further oppose the law itself and believe there is a lack of evidence to prove that it will be effective in increasing organ donations. Respondents further believe that the law takes away organ donors' right to choose which organs they want to donate, some of which may have religious elements. “I don't mind organ donation, but I want to choose something I like because I want to see where I'm going in the afterlife, not my corneas.” [R5274].
Theme 4: Religion and Culture
Religion and culture was another common theme with subthemes regarding maintaining bodily integrity after death and the unclear definition of brain death. Organ donation is against religion or “I don't know if I'll be allowed to donate my organs.” [R1067].
Question 2: I need more information to decide. What information would help me decide?
This question was most frequently answered by women.yeah= 188, 74%), 55 years or older (yeah= 80, 32%), of which 19% were from minority ethnic groups (yeah= 49). Subset analysis of place of employment showed that 18% were from transplant centers (yeah= 46), 8% were mental health trusts (yeah= 18), 9% from the Ambulance Trust (yeah= 23). Thematic analysis revealed that “all”Although it was not specified what kind of information was needed, many respondents indicated they needed more general information about organ donation, with five subthemes identified.
Sub-themes:
The first subtheme identified requests for information regarding the influence of family members on organ donation decisions and the information provided to families. This included: “Emotional well-being” [R162] Support, family “Appeal against decision” [R539] or “Consult” [R923] After the death of a loved one, there was a demand for transplant surgery, mainly from people working in transplant centers.
The second request is “The process of removing organs after death” [R171]There are specific requests, primarily from ethnic minority groups and those employed in mental health trusts, for checking eligibility. Other examples of information requested about processes and pathways include: How are organs used? [R1086], “Things to be donated” [R1629]and “Who benefits?” [R3730].
The third most common request was for information about a public relations strategy to raise awareness of the legal changes. Many respondents felt that there was not enough information available. “Media coverage” [R3668].An additional consideration regarding public dissemination is that it isEasy to read update” [R1373],especially “Elderly people and those who are not good at English may have difficulty completing the procedures.” [R1676].
The fourth request was for information about the system for recording decisions. There was an additional request regarding the opt-out process if someone is in an excluded group. “What safety measures are being taken?” [R3777],Also consider if an individual changes their mind, is this new decision easily recordable?
Finally, similar to the first question, the fifth request was for information about the evidence base. Respondents stated: I want to know the reason for this change. [R3965]The thought was that greater understanding might increase support for legislative change.
Question 3: Have you discussed your decision with your family? If no, please tell us what is preventing you from discussing it with them.
The open-ended responses analyzed were from people who answered “no” to the question “Did you talk to your family about your decision?” There were 1,430 responses, and the majority of them were women (yeah= 1025, 27%) answered “no.” However, not everyone left an open-ended response, leaving 1088 comments for analysis. These were primarily from people aged 55 and over (yeah= 268, 24%), of which 5% were from minority ethnic groups (yeah= 49). Subset analysis of 1,088 responses by place of employment showed that 14% were from transplant centers (yeah= 147), 7% were mental health trusts (yeah= 78), 9% from the Ambulance Trust (yeah= 96). Analysis revealed a major theme of priority and relevance comprised of five subthemes.
Sub-themes:
In the first sub-theme, one of the reasons is that “Individual decision” [R3] And there “Nothing to gain” [R248] emerged from discussion. Some respondents stated that despite the lack of discussion, their families assumed and supported their wishes regarding organ donation. “I think they all have the same mindset.” [R4470].However, the reason for this is that “I don't have any family” [R1127] Do you want to discuss this? “Young people have limited understanding of organ donation.” [R356]On a positive note, several respondents suggested that the question prompted them to talk to their families.
Another reason given by respondents was that they found the topic too difficult to discuss. “Recent bereavement” [R444]”Current Environment” [R441]and “I hesitate to talk about death” [R4486]As the latter quotation makes clear, many respondents were reluctant to discuss death and dying. “Taboo topic” [R3285]they are more likely to avoid such conversations.
Finally, the fifth reason is that some of the respondents “Nothing has been decided yet.” [R2478]One respondent wanted to see all available information and have an informed discussion before making a decision.
Misconceptions
At the request of NHSBT, a further subset analysis of responses categorised as misunderstandings was considered, noting whether these arose from medical staff working with donors and recipients. Misunderstandings were identified in three questions, accounting for 24% of responses to questions opposing the law. Responses used emotive and powerful language suggesting state ownership of organs, abuse of the system for organ procurement, changing the treatment of donors to hasten death, religious and cultural objections, and the value of recipients.
Professionally, I worked in an organ harvesting operating theatre, but the way surgery was performed back then made me feel uneasy. Although a “brain death” test had been done before the operation, the patients' vital signs often indicated that they were responding to pain stimuli. Sometimes, patients were not given painkillers, which are common in routine surgeries. This has made me reconsider organ donation and has made me feel uneasy. Before this experience, I always carried an organ donation card, but after this experience, I no longer wish to donate. This may be a personal feeling, but it is my experience. [R660].
I believe this is a choice that should be left to the individual and their family. I have worked with transplant patients for many years and have found that not all recipients adopt a “healthy lifestyle” after transplant, and many revert to the lifestyle they had before they needed a transplant. [R867].
Additional comments suggested that certain medical conditions or advanced age could make organ donation impossible, thus depriving people of the right to choose which organs to donate.
Most of them would be of no use to me because I've had a heart attack, I smoke, and I have type 2 diabetes. [R595]
Further analysis revealed that 27% (yeahTwenty-four of these comments were posted by individuals who worked in the field of supporting donors and recipients.
