The Human Tissue (Authorisation) (Scotland) Act 2019: qualitative research - October 2019 to January 2020

Section 1: Staff views and understanding of donation and the opt-out authorisation system

This section relates to research questions 1 and 2:

1. What are NHS staff members’ views on, and understanding and awareness of, the new opt-out authorisation system?

2. What are NHS staff’s views on the NHS organ and tissue donation system, and donation as part of end-of-life care?

Key Findings:

• Most NHS staff interviewed feel that current donation practices already broadly match the goals and practices inherent in an opt-out donation authorisation system.
• NHS staff members are very supportive of organ and tissue donation while also recognising that donation is a challenging experience for all involved.
• NHS staff feel that implementing an opt-out authorisation system in Scotland could have positive impacts, such as raising public awareness and support for donation and encouraging people to register on the Organ Donation Register (ODR).
• NHS staff members highlighted difficult aspects of the donation process, which centred on the long duration that donation processes can take and the impact of this on families and staff.
• NHS staff members want to ensure that a move to an opt-out authorisation system is done well so that patient and patient family trust in the NHS is maintained.

1a. Most staff feel that current donation practices match those inherent in an opt-out system

The research questions underlying this study made a distinction between the current organ and tissue donation system and that which is anticipated after the move to the implementation of an opt-out donation authorisation system in Scotland. However, this distinction was much less apparent in discussions with NHS staff. The majority of NHS staff members interviewed expressed support for, or neutral feelings about, a move from the current opt-in authorisation system for donation to an opt-out donation system. However, the majority of NHS staff did not feel that a move to an opt-out authorisation system would significantly change the majority of key donation processes or practices, such as identifying a patient as a potential donor, referring that patient to a SNOD/TDC, broaching the topic of donation with patient families, or the donation authorisation conversation with patient families. Differences in views about the change to an opt-out system did arise within different NHS staff groups, as described below.

CLODS, ICU Consultants, and ICU nursing staff

In general, ICU consultants and ICU nurses felt that a shift to an opt-out authorisation system would not greatly impact the current donation processes, whereas staff working within Emergency Departments, or SNODs were more likely to predict impacts of the change. Indeed, a large number of ICU consultants expressed the hope that significant changes would not be made to current donation processes as currently practices were describes as in line with the goals of an opt-out system. For example, an ICU consultant commented:

“I would hope that actually it's not going to cause too much of a change of practice because I would like to think that we're actually doing a lot of these things - they are routine already.” (ICU consultant)

The predominant reason for this anticipated lack in changes to donation processes, was grounded in staff views that current practices already mirror the goals of an opt-out authorisation system, in that every potential patient is identified, SNODs are contacted about potential donors, and that almost every patient family is given the opportunity to consider donation as an end-of-life care option. The following quotations illustrate the views expressed:

“I'm not against an opt out [system], I'm just not entirely convinced it will make a difference because...unless they [a patient family] said they don't want to, we approach everyone anyway whether they are on the organ donor register or not. I just don't see why it [the move to an opt-out system] will increase it [donation rates].” (ICU consultant)

“…the dynamic or the process will probably change a little bit, but not a huge amount to be honest with you, because you're going to still have to speak to an organ donation nurse to talk about the process. And so they're going to have to be involved in the process at some stage anyway.” (ICU consultant)

‘…from my point of view the way that I would approach things will be essentially the same...Perhaps I might phrase my questions slightly different in that I would say I am obliged to now ask [about donation and/or if they wish to speak with a SNOD]. Something like that…I always said that it's my duty to ask in this situation so whereas now it would be perhaps I might just rephrase. So I don't think that from my perspective on a one to one patient or family discussion, that the law change is going make a huge difference to me.” (CLOD)

Many ICU nurses also expressed the view that the opt-out law would not greatly impact their day-to-day work. They described their main responsibility as caring for the patient and supporting patient families, which was cast as separate from the consultants’ responsibilities to have conversations with families about donation and authorisation. Many explained that the change in authorisation system would more likely impact conversations with families about donation, and therefore was less likely to affect their nursing practice. Several nurses did however comment that a change in the legislation might result in families “asking about it [donation] themselves...more often,” resulting in nurses alerting the ICU consultants about a family’s queries more often. A more detailed discussion of anticipation of a potential increase in families’ awareness of, and questions about, donation is discussed in section 1c.

These views expressed by ICU staff members illustrate that they were largely “not worried” about the move to an opt-out authorisation system, in so far as they felt confident that their current practices allow for the facilitation of as many appropriate organ and tissue donations as possible. These comments also underline ICU consultants’ general confidence in their knowledge about “what opt-out actually means” as most felt assured in comparing current donation practices to those anticipated in post-implementation of the new legislation. Variations in confidence about their comparative knowledge did emerge, mostly having to do with “the specifics of the law” such as legal stipulations or complex authorisation situations, among others, which are discussed further in section 3.

SNODS

Akin to other NHS staff groups, SNODs also largely felt that a change to an opt-out donation system was unlikely to drastically change their current practice, especially as it related to conversations they had with patient families or the ICU team(s) they worked with. Like ICU consultants, SNOD interviewees felt that their approach was already in line with their understanding of the aims of an opt-system, in that the option of donation is discussed with every patient family, all information about donation is provided to that family, and that their work with families and within ICU setting works to normalise donation as an end-of-life care option. As one SNOD explained:

“I know that the law is obviously changing, but I don't think the core essence of our conversation is changed. I mean, our core part of our conversation [when speaking to a family] is to make sure they know what they're agreeing to or agreeing not to do, and making sure that they've got the full information to make the choice.” (SNOD)

The majority of SNODs were also careful to describe the importance of a “non-coercive” approach to authorisation conversations with families. They also spoke of plans to continue with this approach post-implementation of the Act both because “donation might not actually be right for everyone’s situation” and “shouldn’t go ahead at ‘all costs’”, but also because they felt a non-coercive approach correlates with high authorisation rates. A few SNODs explained that they had high consent rates because this approach helped families understand that they were there to support them “during a difficult time and decision”. As such, this “took some of the pressure off” conversations SNODs had with families about donation, allowing families to consider donation on their own terms and in consideration of patient wishes, as opposed to feeling that “we’re [SNODs] talking them into anything.”

SNODs linked this to creating a better environment for donation authorisation conversations (if families agreed to discuss the topic), which involved questions that could feel “intense” and “invasive” for some families, such as questions about a patient’s history. Many SNODs felt that a non-coercive approach was also appreciated as good practice by their ICU colleagues, and in many conversations, SNODs linked this approach to family conversations with successful and trusting working relationships with ICU staff.

In line with this, SNODs explained that trust built between ICU staff and SNODs encouraged ICU consultants’ referral of patients to SNODs to check for donation eligibility and speak with patient families, when ICU staff felt that a patient was unlikely to survive. As such, SNODs did not think that their approach to family conversations would or should change post implementation of the Act.

A number of SNODs felt that this continuity of practice would be particularly important considering their new ‘duty to inquire’ responsibility under the opt-out system. SNODs described this duty as an extended investigation into a patient’s opt-in, opt-opt, or lack of registration on the ODR to determine a patient’s true wishes and “ascertain true deemed authorisation”. SNODs explained that ICU staff referring “every patient” to a SNOD, would be necessary to a successful opt-out system “because we’ll [SNODs] have to check every time,” under ‘duty to inquire’. Therefore, keeping to approaches that encouraged referrals was linked to the success of the implementation of the Act.

While the majority of SNODs did not anticipate nor encourage changes to their approach to conversations with families or working relationships with ICU staff, they did anticipate changes related to the medical tests and procedures undertaken on a donor to assess the condition of their organs (termed in the Act as ‘pre-death procedures’). In discussions about changes to these procedures, SNODs described their lack of clear insight into what form procedures might take as well as concern about this lack of clarity. However, this concern was often couched in an understanding that these procedures are “being worked out” and that guidance and training would be given prior to the implementation.

In a few cases SNODs did raise concern about what they as SNODs might be permitted to do or not to do in line with new guidelines of the opt-out donation system and the ways in which changes to the procedures might impact on the donation process overall. For example:

“And I think that's probably where our angst lies - what tests we are allowed to ask for. Because, you know, things could significantly delay the length of the process if we're not allowed to do certain things until after we have full authorisation from the family…” (SNOD)

In many cases, SNODs were concerned about the difficulty a ‘longer process’ might have on patient families, a theme discussed further in section 1d.

Emergency Department

This section focuses on the views of those in Emergency Department (ED) settings. It should be noted that these interviewees comprised a very small proportion of the overall sample. It must be noted that ED staff who participated in the study variously identified themselves as being “very pro-donation”, having a “pet interest in raising the profile” of donation, and interested in “seeing where we can consider donation more often” in ED contexts and standards of practice. On a few occasions, these ED staff explained that their particular interest in donation was more pronounced than other ED colleagues because staffs’ encounters and ability to “consider donation” with dying patients are impacted by “the nature of ED medicine”. Therefore, this small, self-selecting sample may not represent the overall views on and awareness of donation across ED clinical staff overall who were not reached as part of the recruitment methods, or chose not to participate for various reasons. However, due to the lack of evidence regarding the views, attitudes, and perspectives of ED clinical staff involved in, or potentially involved in donation, a full discussion of findings is included here.

Similar to their ICU colleagues, ED consultants and nurses felt that a drastic change to practice was unlikely, however, the ED staff interviewed were more enthusiastic in describing how the new law could be “very helpful” in prompting greater awareness of, and discussion of, donation as an end-of-life option in ED settings. ED staff explained that the context of the ED made “donation as a frequent topic of discussion” with patient families or between colleagues difficult. They described how their time with patients was limited, and their medical duties and meetings often needed to conform to clinically pressing, time-sensitive needs, and competing demands. They explained that the unfortunate circumstance in which an ED patient died often arrived quickly and did not often allow for end-of-life care conversations or discussions about donation with patient families prior to death so that donation procedures “could be put in place in time.”

Interviewees related ED departments’ higher tissue donation (as opposed to organ donation) rates to the difference in timelines between the two donation processes. Interview conversations illustrated that preparing a patient (who has been determined as unable to survive) for organ donation is rarely possible in an ED context, however arranging for patient families to be asked about tissue donation and put in contact with a TDC post death was more feasible. In addition, it was explained that ED units have a “high turnover rate”, which meant that specific unit cultures or standards of practice/support for donation were challenging to coalesce. Further, their attention and time after a patient’s death was often immediately needed for another patient, and as such, they were often not able to have longer conversations with families or follow-up “to raise the question of tissue donation”. As such, ED interviewees felt that donation as part of end-of-life care was often not an “ingrained part of practice” or “something that consultants [in ED units] think about.”

The challenges of ED contexts described were often discussed in connection to potential opportunities created by a change to an opt-out authorisation system, which could help to raise the profile of donation within ED departments, and create opportunities for more standardised practices, tools, and education sessions to promote “just thinking about donation” in “hectic” ED contexts. While an ED consultant explained that “I don’t see drastic change happening all at once”, all three ED participants were hopeful that a change in the law would instigate more ED consultants and nurses to raise the topic of donation with families after death, “even if it’s just to ask if a tissue nurse (TDC) can call them.” As such, those working in ED contexts saw any changes to clinical practice that might occur as being incremental, and focussed most on making staff consideration of donation a consistent part of end-of-life care. Most explained that a change in legislation, and its related staff training might also address what they felt was colleagues’ “lack of confidence” about raising the topic of donation with families. This view, and others related to the views on training is discussed in greater detail in section 3.

In summary, NHS staff view the most direct and significant impacts of the law as having less to do with their current practice, and instead felt that the impacts of this law change will be seen “on the public level”. This was described as changes in levels of public awareness, knowledge, and impacts on the public’s views about donation more generally. Many staff pondered how “shifts in the public [opinion]” would impact on conversations and relationships with future patients and patient families. As the following discussions of this report unpack, a large number of staff anticipated seeing changes in the expectations of patient families about end-of-life conversations and families’ own discussions about end-of-life wishes. Many felt that in turn, these shifts could impact NHS practice “from the ground up”. These views are further detailed in section 1c.

1b. Staff are supportive of donation while recognising its challenges

During interviews, staff members overwhelmingly expressed positive support for organ and tissue donation generally, and felt that organ and tissue donation should be an end-of-life care option for patients and patient families within the NHS. Many staff members also described their units as possessing a ‘culture’ of donation support, and most considered this to be part of a trend of increasing support for donation over the past decade.

At the same time, the majority of staff members were clear to highlight that their feelings of support for donation were complicated because many aspects of the donation process are challenging and difficult for patient families and staff alike. Many NHS staff explained that their primary aim was, above all, to respect the experience and grief of patient families during the end-of-life period of their family member. As a self-identified ‘pro-donation’ ICU consultant described:

“getting it right for the family and feeling like you've done the right thing by them for me, at any rate, is one of the most important parts of this. I don't want to feel that, yes, we got two kidneys, a liver and a pair of lungs, but I've completely ruined this family's experience of grief, so I think getting the detail right is essential.” (ICU consultant)

This quote illustrates a view expressed by staff across all interviews and focus groups with all NHS staff groups: patient and patient family care was a central topic of discussion and named as their paramount concern when considering donation in an end-of-life care situation, and in contemplating a transition to an opt-out authorisation system. This attention to patient and patient family care and experience run through the most frequently named aspects of organ and tissue donation which staff linked to their positive views about donation and potential benefits of moving to an opt-out system, as well as which aspects of donation and opt-out they highlighted as the most challenging.

The following sections detail the reasoning behind staff’s positive views on donation and opt-out, as well as their concerns.

Donation can positively impact donor families’ lives

Many NHS staff members highlighted that “often families do take a lot of comfort and a lot of solace in the future from having been able to donate” and that organ and tissue donation can also offer emotional comfort to families “during a tragic and difficult time.” For example, an ICU consultant explained that:

“I think there's a perception [among patient families] that it’s a really important thing to do. And I think what families get out of it is amazing…most families report back to us that having known some good has come out of - it's been good.” (ICU consultant)

Another benefit highlighted was the added levels of support that SNODs are able to provide to families who decided to move forward with donation. A CLOD explained that:

“the donor families get more support. They get the organ donation nurse with them through the process. They get follow up letters and offers of support for them. That's something that we attempt to do with all our bereaved families but they definitely get more from the NHSBT addition. And so if nothing else, they're getting more interaction from support services.” (CLOD)

ICU staff in particular saw this as a positive, in line with a pervasive commitment to patient and patient family care, and links with views that donation and its requisite processes are an important part of the ICU procedures and care.

While staff members highlighted that donation could bring comfort and solace to families, others were careful to point out that this benefit was not necessarily immediate during the process of donation. During a focus group, a SNOD described that:

“when we are looking after them, they're going through their worst-case scenario. It's an absolute nightmare for them and some of them at the time do say I'm glad that this [donation] can happen, but some of them are just very quiet. And you see them mourning and you see them very upset, but you don't see them getting any benefit from it at the time.” (SNOD)

Interestingly, some NHS staff described that those families that were “sure” about donation and felt confident that “this is what he [dying patient] would have wanted” often found more comfort during the donation process than those families that had never spoken about member’s donation decisions before. This points to potential benefits to patient family comfort and solace which may be gained if the implementation of the donation opt-out legislation instigates the normalisation of conversations about donation wishes between family members prior to circumstances in which NHS staff discussion donation with them in clinical settings, after a tragic event.

Patient choice is supported with donation as a standard option in end-of-life care

Many NHS staff felt that considering the wishes of a patient and discussing donation with families was an important way to support choice during the difficult period of end-of-life care. This was framed this as in line with NHS staff members’ prioritisation of patient and patient family care and experience, as well as following a shared decision-making model of care. An ICU consultant explained that:

“[i]f you are somebody who could potentially be considered as an organ donor, I view that as an individual choice. In the same way that dying at home, dying in hospice, all those other things, having music, having lavender, whatever your thing is, it's an end of life choice. And that's [donation] something that we can facilitate as an end of life choice, because ultimately for all ICU doctors, we're doing it for our patient…” (ICU consultant)

NHS staff members, particularly consultants in the ICU and ED, cited the importance of the ODR (Organ Donor Register) when seeking to support patient choice. The usefulness of the ODR was cited in many interviews and support groups, in particular in those with ICU consultants, when speaking about preparing for an end-of-life conversation with the patient family. For example, a CLOD explained:

“Yes, it's a very powerful message to deliver to families. I think if someone is a potential donor and they're on the organ donation register, it frames the conversation very differently. Because what you're saying to families is we're able to fulfil their wish. As opposed to asking the families, do you think they would want this?” (CLOD)

This comment is similar to many made by staff members, which highlighted that “being able to come to them [families] with this piece [registered choice on ODR] of information” seemed to result in less stress for families in many instances, as they might not know their family member’s view on donation and therefore feel unprepared to “choose for them”. Other staff also mentioned that knowing that a patient registered a wish to be a donor gave them a “place to start” in discussing donation with families. While most staff explained this was easiest when a patient had registered a pro-donation wish, others explained that if a choice had not been registered, having “checked” the ODR and consulted with a SNOD allowed them to start an “informed” conversation with family.

Some staff members had experience working in Wales, where the opt-out system for donation was implemented in 2015. One ICU consultant who had this experience explained:

“I know some people would have concerns that the new legislation makes patients feel coerced, families feel coerced, that the state is ‘stealing their organs’ or the state is ‘claiming right to your body’, but in practice, I did not see any of that at all. I thought it was done in a very sympathetic way and I didn't see any pressure to coerce a family and didn’t see anyone feel uncomfortable with it. If the family expresses no interest, particularly with it being a soft opt out, the organ donation services completely stand back.” (ICU consultant)

Importantly, while many interviewees described themselves as being ‘pro-donation’, staff made it clear that which choice – whether to authorise donation or not – was much less important to them than knowing that patient choice had been ascertained, families had been consulted, and their views respected. For example:

“the outcome does not really matter as long as the family has made the right decision for them, for the patient, I'd like it to be a yes, but as long as we have done things appropriately, if it’s a no, that's actually fine.” (CLOD)

“…it's [donation] not for everyone - at end of the day it’s a personal choice so you [staff members] don't get too wrapped up in people who say no because it’s obviously the right reasons for them.” (SNOD)

Donation can save, or improve, the life of a transplant recipient

Staff members also tied their positive views of donation to the lives that an organ or tissue donation might save or enhance. As one SNOD said “It's a good thing, [it] helps save people's lives.” Another SNOD explained:

“…when I am called to the unit I know that the family I am going to speak to will be heartbroken but I can't change the outcome there, but if they go down the road of organ donation we can at least make someone else's lives better. I can't change people dying but I can change the outcomes in terms of improving the lives of significant others. So that is my main driver for the job I do.” (SNOD)

In a few focus groups with a range of staff members, participants commented on the benefit of hearing from transplant recipients either in the form of a donation presentation or updates from a SNOD. A SNOD explained that they had arranged for a recipient to give a talk “to ICU staff and there wasn't a dry eye in the house. And the majority of the consultants came in for it. That had a huge impact, I think.” A number of ICU consultants remarked that hearing from a person who has survived because of a transplanted organ is appreciated and illustrates how the challenging process of donation can “be worth it.” In keeping with these comments, a few SNODs and CLODs explained that feeding back communications between donor families and transplant recipients to ICU staff has also helped in raising awareness about the benefits some donor families experienced after their donation experience upon the passing of their family member.

It is important to note that while many staff members pinned their positive view of donation in part to the benefit it could potentially create in the life of a transplant recipient, most were equally careful to explain that “transplantation needs aren’t the motivation to facilitate donation.” As one ICU staff member elucidated, “[m]y patient is the one in the ICU bed – not a patient elsewhere needing an organ.” In a number of interviews and focus groups, staff explained that “things [success of donation or transplantation] can miss the mark – timing, post-op, etc”. Therefore, in light of the uncertainty of donation success, many staff were clear that their focus in a donation process was on patient care and choice, and supporting patient families.

1c. Staff feel that implementing an opt-out system could have positive impacts

In the majority of interviews and focus groups and across all staff role types, people anticipated positive impacts due to the change in law and implementation of an opt-out system in Scotland. They discussed various impacts a publicity campaign about the law change might have in raising the profile of donation, as well as anticipated increases in registrations on the Organ Donation Register. In line with themes identified in NHS staff members’ positive views on donation more generally, their views on the positive impacts of moving to an opt-out system centred on patient and patient family care, as well as supporting patient choice. The following sections detail facets of staff views regarding the potential positive impacts of an implementation of an opt-out system.

Publicity can raise the profile of donation generally, and tissue donation specifically

NHS staff members hoped that the publicity campaign will instigate greater public understanding and awareness of donation, thereby creating a ‘culture shift’ around donation wherein families have conversations about their donation wishes; expect donation to be discussed at the end of life; raise the topic with NHS staff themselves; and increasingly view donation as ‘default’ or ‘normalised’ end-of-life care choice.

ICU consultants’ and nurses’ hopes were grounded in wishing to reduce patient family stress during the difficult experience of having a family member in the ICU, particularly when that family member will not survive. Both ICU and ED consultants hoped that a publicity campaign would lead to more families speaking about organ and tissue donation and their donation wishes before “ever arriving to the ICU” or the Emergency Department. For example, an ICU consultant explained:

“I still feel slightly sad, the number of relatives I speak to…do you know what your relative’s wishes were? And they say, no, no idea. And I think it's a conversation that everybody should be having with his or her family, so this is my wish. Because then if something ever does happen in that situation, when you say, do you know what your relative’s wishes were? The answer is absolutely, I do.” (ICU consultant)

An ICU nurse also explained the positive effect previous discussions within a family can have on the end-of-life experience of families when explaining their hope for a greater incidence of these conversations:

“And it's actually quite remarkable how some families have considered it before and it is really easy when they have and they are informed, it is effortless because…it is what they're thinking about already. They realise what's going on. And it's remarkable.” (ICU nurse)

These comments show that staff positioned these prior discussions as reducing the “the surprise” for families when the topic of donation is raised during an end-of-life conversation. Numerous staff, particularly ICU consultants, had anecdotes from the ICU and ED about the emotional turmoil this uncertainty about a patient’s wishes could create for families, as well as the stress staff themselves felt when families were in distress over this decision. Staff also linked this uncertainty to lower donation authorisation rates:

“[Y]ou get a group of patient families who will say, 'well I just don't know, I don’t know what they [the patient] would want!’ and they're paralyzed by not knowing. And I think when you don't know, people would rather do nothing than do something, so they're the ones that don't consent.” (ICU Consultant)

This remark underlines a number of NHS staff members’ views that currently the ‘default position’ taken when a family is uncertain about a family member’s donation wishes is to ‘do nothing’, i.e. decide to not authorise donation. Non-authorisation was explained to be the default choice by families and some staff members postulated that an opt-out donation authorisation system might impact what patient families consider to be the ‘default choice’ when there hadn’t been previous discussion about a family member’s donation wishes. ICU consultants and SNODs, in particular felt that the new law and its potential to create a culture change around donation would “make it easier for families to say yes [to donation]” because while donation “hasn’t normalised yet” as a default choice greater publicity could raise the public’s positive views of donation and its impacts.

Due to difficulties that uncertainty about a patient’s wishes can raise, in about half of interviews and focus groups, staff members also expressed hope that greater publicity of donation might lead to more families raising the topic of donation themselves, before or during the event of an end-of-life conversation. These staff members tied this to anecdotal evidence about a growing trend of families asking about donation or expecting donation to be discussed as a matter of course if their family member’s health declines. All staff members who described this trend of families cast it as a positive effect of a growing ‘culture change’ around donation. One ICU consultant explained that:

“It [families raising the topic of donation] happens once or twice and it's interesting when it does. Often it's people who were on a donation register and the families know about it and in those situations, sometimes they do bring it up. And when they bring it up, it just makes the whole situation a hundred times easier than it would be. Because then it feels like you're sort of helping them to achieve something that they and their relative wanted rather than just asking them for a favour…” (ICU consultant)

As illustrated by this remark, staff members not only saw more openness and family knowledge about donation as reducing overall distress, but as an opportunity to work together with families to support patient choice. This links to the earlier discussion about patient choice, which was cited by many NHS staff members as an integral and valued part of their practice.

Raising the profile of tissue donation

A number of staff members, particularly TDCs and ED staff, described that there was far less awareness about the particulars of tissue donation as compared to organ donation among the public and other NHS staff members, particularly in ICU contexts. This is partly because in ICU settings tissue donation is often authorised alongside organ donation. This was described as also having to do with differences in how people conceived of organ donation versus tissue donation. For example, a TDC explained that:

“…a lot of people don't know about tissue donation, even random people ask me about my job outside of work when I start talking to them. 'I didn't realise, I've just ticked yes to everything, but never really thought about exactly what I'm ticking yes to' or a lot of people who say I put no to eyes and then when I explained to them they're like, oh, wow. Why did I tick ‘no’ to eyes?” (TDC)

In addition, a CLOD described a general lack of awareness about tissue donation among ICU staff:

“I think you forget about tissue because tissue is seen as, well, organ is seen as very lifesaving and tissue is not seen as lifesaving, well, life improving, perhaps. And there's less urgency for tissue, and I don't often have any tissue conversation because I think my knowledge of tissue donation is very, very limited.” (CLOD)

However, in a focus group SNODs explained that when a referral is made to them for a potential donor and they discuss authorisation with a family, they consider tissue donation as a matter of course, even if “most people don’t realise there is a bit of difference between the two” [in terms of arranging the logistics of donation facilitation].

The issue of the difference in infrastructure and capacity to carry out tissue donation as opposed to organ donation in Scotland arose in a number of conversations with staff. The logistical issues highlighted were that tissue donation outside Scotland’s Central Belt is rare and often not possible to carry out. These staff members reflected on this difference in capacity as an impacting factor on the lower awareness of tissue donation, particularly in the northern regions of Scotland. In addition, some families have difficulty allowing their family member’s body to be moved to a different location after organ donation to facilitate tissue retrieval.

NHS staff members that mentioned the imbalance in awareness and consideration of tissue donation, often then reflected on ways to rectify this imbalance. For example, a few interviewees ,mentioned the importance of raising awareness among ICU staff of that fact that while a patient may not appear to be a potential organ donor, they may be a potential tissue donor. Additionally, due to the high turn-over rate of ED consultants, TDCs and ED consultants spoke about the need to continually train new ED staff coming into post about incorporating questions about tissue donation in their end of life conversations with patient families.

In line with this, an ED staff member suggested the use of different kinds of cueing tools to remind consultants in the ED to raise the question of donation in the event of death, as well as give suggestions on how to frame the conversation. Also, TCDs spoke about empowering ED nurses to speak to families who have just suffered the death of loved one:

“just to make the family aware that they have this option because when somebody signs up in their lifetime to be a donor, nothing flags up on the system in the hospital you know, the computers don’t say that this is a potential donor. So we really rely on the hospital staff.” (TDC)

These reflections indicate that NHS staff members view the imbalance in awareness of and knowledge about tissue donation as something to be rectified.

Publicity could prompt more registrations on the Organ Donor Register

Many staff members hoped that the publicity campaign associated with the new opt-out law would prompt more people to register their donation decision on the ODR. This was framed as a ‘good’ benefit of the law because it would allow more people to “actually think about it [their view on donation]” and create more instances in which patients’ donation decision would be known at end-of-life. Further, many staff members commented that encouragement to register on the ODR should be coupled with direction to speak to family and friends about these wishes – both to prompt family conversation and more widely raise awareness of the ODR register. NHS staff views of the ODR as a tool link to NHS staff members’ persistent attention to patient choice, as well as patient family care.

Comments made in most interviews and focus groups demonstrated that many staff members, and patient family members they have encountered, position a person’s ODR status as an important indication of, or method by which, to “know”, a patient’s wishes. This conceptualisation of the ODR featured strongly in many discussions about what role the ODR would play in ICU and ED practice post implementation of the opt-out authorisation system, for a variety of reasons.

Firstly, many staff members explained that checking the ODR, or asking a SNOD to check the ODR, was an important element of considering whether a patient who will not survive might be an potential donor. Interestingly however, most ICU staff members said they always “called in the SNOD” or approached families regardless of whether a dying patient was registered as having opted in, opted out, or was not on the register. They explained that knowing a patient’s ODR status helped them feel “more prepared” for an end-of-life conversation with family members when the topic of donation was likely to be raised, particularly if a SNOD was present during this conversation. ICU consultants in particular explained that a patient’s “ODR status” (whether they have “signed up as a donor” or not) can be a helpful “way in” to a topic of donation in conversation. An ICU consultant explained that, “if they've already registered [on the ODR], it will just make the conversation even easier still. I think that's those are the easiest conversations.” Another said:

“And what it then does is, what it will do is flag up a system that this person has opted out and it will mean at that point we know what their wishes were…So actually, we have to just to confirm to the relatives that that's still the case. But it's a clearer starting point to begin with.” (ICU consultant)

While this view was the norm, it is important to note that a few ICU consultants explained that if a patient had opted out on the ODR, they were less likely to consider a patient as a potential donor or donation as an appropriate topic for discussion with family to check that their loved one’s latest view was that they did not want to donate.

Additionally, the majority of ICU consultants spoke about the significant role a patient’s ODR status can have in conversations with family members, particularly when the topic of donation had not been discussed within families previously. A SNOD explained that “some families don't know their loved ones are on the register so it is a surprise when they are told.” They highlighted that a patient’s ODR status can significantly impact a family’s decision to authorise donation, reduce emotional burden on families related to donation uncertainty at their family member’s end-of-life, and allow NHS staff to place them in a position of facilitating a patient and/or families wishes in regards to donation. As one ICU consultant explained:

“I think it takes a lot of pressure off relatives in that situation where actually they know their relatives wishes and they don't feel like they are having to make that decision on behalf of the relatives. They can act as more of an advocate for their relatives wishes rather than feeling that the decision falls on them to make.” (ICU consultant)

The views outlined in this section illustrate that many staff felt that higher ODR registrations would lead to easier, more straight-forward conversations with families, again underlining the importance NHS staff place on patient family wellbeing.

It is important to note that the ODR was discussed less often by the staff interviewed who work within ED settings. ED Consultants explained that because end-of-life circumstances often occur more suddenly in ED settings and there is less time to discuss end-of-life care options, “checking the ODR” or speaking to families about donation is not standard practice. Further, an ED Consultant explained that a patient who is stabilised within an ED setting, but still in critical condition is then often moved to an ICU setting. Therefore, that patient’s care, and end-of-life care, if they are unfortunately not able to survive, is conducted by ICU staff.

1d. Staff highlighted difficult aspects of the donation process

While NHS staff members on the whole are supportive of organ and tissue donation as a normalised option within end of life care, many staff members also outlined the ways in which donation can be a challenging and difficult process for staff members and families alike. As one ICU consultant explained:

“I am supportive of it [facilitation of donation] but I think it's a very complicated topic. And I think ethically, emotionally, I think it's one of the hardest things that we do in intensive care. I absolutely see the benefit of it at the other end but I think it is very complicated. I don't think it's a black and white transaction at all.” (ICU consultant)

It is important to note that while this section details challenging aspects of the donation process, staff members also outlined a number of ways to build a positive donation culture and successful donation processes, and meet the challenges inherent in donation, which can be found in section 2 of this report.

In interviews and focus groups, staff members’ discussion of the challenging aspects of donation largely centred on the logistics of the donation process, particularly those related to determining potential donor/transplant recipient suitability and organising the donation procedure. Staff members, particularly ICU consultants highlighted that the complex logistics of these processes can result in long wait times, which is difficult for both families and ICU staff. For example:

“I think extensive delays and uncertainty…here they [patient families] have maybe already had a couple of days of disrupted sleep. You know, the family are struggling because they've been in the hospital, had this bedside vigil for someone they hoped was going to survive and then isn't now going to survive. And then to prolong that further by, you know, 24 hours, often or longer, it’s sometimes just too much. Yes. It's system problems, but it can also sometimes just be [too much for] the family themselves.” (ICU consultant)

Often, when this concern about the challenges of donation was raised, staff then linked it to earlier discussion of their focus on patient and patient family care, demonstrating that the main challenges of a donation process are seen as those which could potentially create a difficult experience for families.

One suggestion that came out of a few focus group discussions among ICU staff was the potential for more communication between the ICU team and families during the donation process, to mitigate uncomfortable uncertainty about the reason behind long waits and help families to feel included after they have given authorisation for donation. ICU staff in particular also felt that a post-donation audit from the NHSBT, giving a rationale for the wait times, would help them better understand how the process works, so they could, in turn, explain it to families.

A small number of staff members also raised the issue of bed space, which can create difficult decisions for ICU consultants. Some see using an ICU bed to facilitate donation as appropriate, whereas others do not. In interviews, those that expressed support for using an available ICU bed to facilitate a potential donation tied this to the duty to support patient and family choices about end of life care. Only a small number of interviewees did not support this and they linked their hesitation to concerns about how emerging ICU bed space and personnel demands would be complicated by a recently admitted patient that is past the point of life-saving care.

Finally, several staff members voiced concerns that members of the public lack understanding about what organ donation entails in an ICU setting, as it can be a prolonged and emotionally exhausting experience for patient families. In line with this, a handful of consultants shared the view that because of this lack of public understanding of the challenges of an organ donation process, an opt-in decision registered on the Organ Donor Register may not have been made with ‘full informed consent’. Two consultants felt that opportunities to learn about how to register on the ODR registrations made in conjunction with other services, such as when registering “for a Boots card” can create situations in which a person’s registration was not “an active decision.”

1e. NHS staff members are invested in a sensitive move to opt-out

When asked about any concerns that they might have about moving to an opt-out authorisation system, the majority of staff responded with some concerns. Most of these centred on wanting to ensure that patient and patient family trust was maintained in a move to an out-opt system. Other concerns, named by a few staff members, were that donation might not be seen as a ‘gift’ in an opt-out system, and that implementing an opt-out system might not achieve the intended goal of increased donation rates.

The importance of maintaining patient and patient family trust

Many staff felt that the tenets of the current donation system that instil patient family trust would be maintained in the new system. When discussing concerns about losing trust, many NHS staff explained that it was paramount that patients and families understood that donation is only considered after all clinical care options have been considered and determined to be futile, both in the current donation system as well as after the opt-out authorisation system is implemented. To illustrate this point, an ICU consultant explained:

“…families have got to understand and believe us that we have tried everything that we possibly can within the realms of possibility of medicine that's appropriate…And if they don't trust that, they won't trust you and they'll go away…they'll go away in distress that they've been misled, so first of all, [you have to] make sure that you've achieved the goal [of speaking to families about the patient’s inability to recover] first before you bring up organ donation. And they have to understand that this is inevitable. Death is inevitable. There's no other options here. And what's more, this doctor has been absolutely dedicated with no external biases whatsoever to making sure that every stone was turned in looking for a solution to make this precious person survive.” (ICU consultant)

A smaller subgroup of staff members who spoke about the importance of maintaining family trust, particularly ICU consultants, also brought up the topic of SNODs. These staff members indicated that the inclusion of a SNOD in end-of-life conversations with families could be a potential challenge in maintaining family trust in the current donation system and in the move to an opt-out system. These ICU consultants explained that because the SNOD is a staff member dedicated to donation work and in many cases has not met the family prior to an end-of-life conversation, they worried that families might interpret the SNOD’s inclusion in end-of-life conversations as ‘lacking intimacy’ and ‘too fast’ if they need to first process the fact that their family member will not survive, before considering donation.

These particular ICU consultants who expressed discomfort with including SNODs in end-of-life conversations highlighted that they preferred to keep end-of-life conversations and donation conversations separate so as to protect the role of ICU staff as providing care to the patient. A number of ICU consultants also expressed discomfort at including a SNOD in an end-of-life conversation and/or introducing a SNOD as an ‘end of life nurse’ or ‘palliative care nurse’ because this felt dishonest and risked patient family trust. This was raised as a particular concern with families who ‘don’t see the end-of-life conversation coming’. As such, staff members, particularly ICU consultants and SNODs suggested that their role be disclosed to families carefully, so as to position SNODs as a resource to answer queries about donation, but “not presume that donation will be the next step.” This topic is also included in section 2c.

It should be noted that a large number of staff members commented that including the SNOD in end-of-life conversations with families has had a positive impact on families’ experiences, “particularly among the families that saw it [an end-of-life conversation] coming and ask questions about donation straight off.”

Some staff had concerns deemed authorisation could diminish the ‘gift’ of donation

A small number of staff questioned whether a ‘deemed’ authorisation system might diminish the idea that organ and tissue donation is a voluntary ‘gift’, and instead create an expectation for patients and patient families to authorise donation, or as one ICU consultant explained, “people [might] feel they are being pushed into something.” Staff that raised this concern highlighted their desire to protect patient families from “unnecessary stressful experiences” that might arise if families felt that their family member’s clinical staff expected them to move forward with donation, or alternatively, if families felt that their views or input in the authorisation process was not necessary as it an opt-out system were based purely on a patient’s donation decision. As such, staff saw that their delivery of the donation discussion/question would need to be carefully delivered to make it clear that donation “isn’t mandatory – it’s a choice”, and still give family their ‘role’ in allowing donation, but situate it as allowing the NHS to carry out a patient’s wishes. This approach was described by staff members that expressed worries about the diminishment of the ‘gift’, as well as also by those that did not raise this concern. When describing this approach, staff often linked it to the importance of honouring a patient’s wishes as well as caring for patient families.

Some staff had concerns opt out might negatively impact donation numbers

While the majority of staff members saw the move to an opt-out authorisation system as likely to have a positive impact on donation authorisation rates and see deemed authorisation as in line with current practice, a small number of staff members expressed concerns that a move to this system might negatively impact authorisation rates. This concern was linked to a few different potential issues. One issue raised by a few staff members related to the ‘donation as gift’ concern described in the previous section; some staff worried that if families felt pressured to fulfil an expectation of donation, they might react in the opposite way.

Several staff members worried that an influx of people might register an opt-out donation decision on the ODR, making them ‘unreachable’ as potential donors because conversations about donation as an option in the event of an end-of-life conversation would no longer be deemed appropriate. In line with this worry, staff also hypothesized that because under an opt-out donation system, one’s decision to donate is ‘deemed’, people might not feel it necessary to still register an ‘opt-in’ decision on the ODR, creating fewer instances in patient’s have a registered pro-donation decision. An ICU consultant expressed this concern that with fewer opt-ins, “you [could] have a whole lot of people that nobody knows what they want anymore.” Another ICU consultant explained:

“I don't know how it will work out in practice…if somebody has really opted in I suppose you can say to the family this person is really opted in, they wanted their organs donated and there might be a little bit more willingness on the family side to say, OK, I'll go with that, they clearly opted in and that's what they wanted. Although some families will still say no. Who knows. It also could be that family might be like, well, we're not sure and we don't know if that's what they wanted considering they didn't opt in, at least they didn't opt out. I don't know. I don't know if that's going to be more hesitation on the family side or not. So, yeah, I'm not sure how that's going to pan out in actual practice but in principle just the idea of creating a bigger pool of people that are potential organ donors. I think it's a good principle.” (ICU consultant)

The participants’ comments demonstrate that a registered decision in the ODR supports staff to have this conversation and can help families to feel more secure in authorising a donation or balancing their own views about donation with those registered by a patient. This underscores the link between an ODR decision and family decision making, also discussed in sections 1b and 1c.