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

Findings from qualitative research undertaken between October 2019 and January 2020, with NHS staff involved in organ and tissue donation across Scotland, concerning attitudes toward organ and tissue donation and ‘The Human Tissue (Authorisation) (Scotland) Act 2019’.

Section 2: Supporting successful authorisation processes

This section relates to research question 3:

How can successful early identification and referral of potential donors, and successful authorisation processes best be supported? What supports a reduction in missed donation opportunities? What are barriers to the successful realisation of these aims?

Key Findings:

NHS staff identified a number of ways to uphold a growing trend of donation support within NHS units in light of a move to an opt-out system:

  • Greater visibility of SNODS and CLODs in clinical settings can raise the profile of donation.
  • Good relationships between a SNOD and clinical staff supported successful authorisation processes.
  • Careful inclusion of SNODs in end-of-life conversations can maintain patient family trust.
  • Increased and earlier education about donation could be beneficial in normalising donation as part of end-of-life care in ICU and ED settings.
  • Positive feedback from NHSBT and experience of being a part of a ‘successful donation’ process can buoy confidence and understanding.

These measures were identified within a context that many interviewees described as a growing awareness of, and support for, organ and tissue donation within NHS units in the past decade, and linked this to increasing donation authorisation rates. They often linked this trend with frequent discussion about donation as a consideration in a patient’s end of life care, high referral rates of potential donors to SNODs, and authorisation discussions with families that promoted patient choice, but also supported families’ wellbeing. The vast majority of staff members identified these elements as hallmarks of a successful unit who worked to minimise the number of missed opportunities for donation to be considered for patient who has been assessed as unable to survive.

The measures identified by NHS staff are detailed below and presented in order of prominence in discussions.

2a. Greater visibility of SNODS and CLODs in clinical settings

Many staff members, particularly ICU nurses and consultants, explained that the ‘visibility’ of SNODs and CLODs in their units made a difference in promoting a donation-positive work culture, feeling confident in best practices regarding donation process, and that donation was expected to be considered or offered as an end-of-life care option.

Many staff members explained that ‘embedded SNODS’, i.e. those that work within (or are stationed within) a particular unit, are assets to a successful donation system. ICU consultants in particular explained that ‘having a SNOD right there [in the unit]’ allows for more accessibility for ‘quick questions that [staff] might not otherwise pick up the phone for’ and facilitates the development of good rapport between SNODs and ICU staff. Staff also explained that ‘embedded SNODs’ also allows for more frequent, casual referral, and discussion of potential donors, which many staff found more in keeping with the intimacy of patient care than “calling it in [checking the ODR or speaking with a SNOD] before we’ve spoken with the family.”

In line with visible SNODs, many ICU staff also mentioned that having “an active CLOD” helped to set a positive, motivated tone of donation culture within the unit and served to create a source of donation expertise within the unit. In hospitals that did not have ‘embedded SNODs’, staff members described that the role of donation experts that CLODs held, allowed them to field casual questions in ways similar to SNODs. Some also described CLODs as “the friendly face to the NHSBT missed opportunity/referral audit.”

2b. Good relationships between SNODs and clinical staff

Many NHS staff explained that a ‘good’ relationship between a SNOD and the clinical staff who are in charge of patients and who speak with patient families can support a successful authorisation system. This point was raised by consultants, nurses, and SNODs. Staff linked a good relationship and frequent, informal ‘chats’ with SNODs with decreased missed opportunities for referral to a SNOD as well as increased familiarity with the donation eligibility criteria. Staff working in ICU settings with an ‘embedded SNOD’, a SNOD who primarily operated out of that setting, described this set-up as ideal for “asking the quick question.” A few members of staff that do not have an ‘embedded SNOD’ said that they had a good relationship with the SNODs that most frequently attended their site in the event of a potential donation, but “could see the benefit and convenience” of having an embedded SNOD in asking more informal questions about the process outside periods when a donation process was underway and time might be more constrained.

Consultants were asked about the hallmarks of a good relationship with SNODs. A number felt that it was important when SNODs appreciated the rapport that they (the consultants) had built with families. A few said that when SNODs do not appreciate this rapport, they feel reticent about the SNOD working with the family in case the family’s needs are not considered. One consultant explained:

“I think we are in quite a unique position in the intensive care team in that we've looked after this person and you’ve spoken to the families a lot, we've got to know the dynamics within the family, dynamics with the patient…I think it would be wrong to suggest that we do not have an insight as to where the family are emotionally and how they are coping with things. And different families definitely cope in different ways and reach their sort of threshold for being overwhelmed at different points. And I think we have quite a unique privileged position of understanding that because of the fact that we've looked after them for a period of time before it gets to this stage where futility[5] has been reached and you're discussing organ donation.” (ICU Consultant)

SNODs raised the topic of rapport in focus groups as well. Many SNODs described that it was important to build their consultant colleagues’ trust in them to work with patient families compassionately. As explained one SNOD explained:

“having a side chat with the consultant – and the nurse too, maybe, before you speak with the family is really important. It helps you understand where you are – where the family is at, so you can approach them in the best way possible.” (SNOD)

SNODs who expressed this view linked these ‘side chats’ with having established a good relationship with the consultants with whom they work.

2c. Clarifying SNODs’ role at end-of-life conversations

Some staff perceived pressure to have a SNOD present for end of life conversations with families, a topic also discussed in section 1e. In a number of discussions, some ICU consultants highlighted wanting to keep conversations about end of life and conversations about donation separate from one another. Those that expressed this view explained that separating these conversations can protect the family’s understanding that the role of ICU staff is to provide care to the patient. A number of ICU consultants also expressed discomfort at including a SNOD in an end-of-life conversation with patient families or a introducing a SNOD as an ‘end of life nurse’ or ‘palliative care nurse’ because this might risk patient family trust.

2d. Increased and earlier education about donation

Across ICU and ED settings, and across staff group types, a small number of interviewees recommended an increase in education about donation, and incorporating education about donation earlier in clinical staff’s training. It was explained that earlier education can normalise the consideration of donation within both ICU and ED settings, and would not create situations in which staff need to learn ‘everything about it on the job’, as one ICU consultant put it.

2e. Positive feedback and experience can buoy confidence and understanding

In interviews and focus groups, some staff members expressed that feedback from NHSBT[6] about operations or audits can sometimes have a ‘reprimanding’ tone, which they found demoralising. One ICU consultant explained that feedback did not capture the nuanced and valid reasons behind particular decisions made or events that occurred in a donation process, such as why a family was not approached about donation, which is then recorded as a ‘missed opportunity’ in the audit.

In contrast, a larger number of staff members, particularly ICU consultants, explained that reports back about successful donation processes, such as information about subsequent transplants from previous patients in their ward, were very uplifting for the ward team as a whole. A large number of ICU consultants and CLODs mentioned how important information about this was, or could be, for keeping up support for donation, “showing that all the effort is worth it”, and “feeling like the families who had a rough time found solace” from the process as well. For example:

“There's no feedback. And I think that we are, certainly this unit and I'm sure most other ICUs are driven by making sure that our patients and family members get the best care possible. And I think if we were able to see that organ donation was the best cure for these patients, for these families, that it helped them with the grieving process, then I think that would probably be the most persuasive argument we could make.” (CLOD)

A few described this approach as one built on a positive reinforcement model, in which success was compounded with discussion about what had made a team or process successful, and drawing out learning from these examples. A small number of these staff members also mentioned that reports on tissue donation successes could be important in raising the profile of tissue donation in ICU contexts.

The topic of ‘success stories’ arose in a few different focus groups and interviews with SNODs. It was suggested that letters from transplant patients or donor families could provide ICU units with evidence of the positive outcomes of their efforts to make a donation possible.



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