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Capturing data to enhance organ donation practice

By Catherine Reilly - 10th Sep 2023

organ donation

A pilot audit of organ donation practice in six Irish ICUs has demonstrated the importance of deploying a national potential donor audit. Catherine Reilly reports

Thirty-seven per cent of families of eligible organ donors were approached with specialist organ donation personnel present, and 53 per cent of families were approached at the recommended time, according to a pilot audit of organ donation practice in six intensive care units (ICUs) over a three-month period.

Of the families approached, 68 per cent (13/19) agreed it would have been their loved one’s wish to become an organ donor and assented. This percentage is consistent with international rates of family assent, according to the Potential Donor Audit Development Project Report.

The report noted that, in Ireland, Hospital Group organ donation personnel (ODP) are organised at Group level and are not a 24/7 service. Approaches to families may be undertaken outside the routine working hours of the Group ODP.

As of August 2023, there are five Clinical Leads in Organ Donation in post nationally (six posts are funded). There are six organ donation nurse managers (ODNMs) in post, with a further seven posts in the recruitment process.

In the NHS, by comparison, there are specialist nurses in organ donation (SNODs) embedded in most hospitals. Data from the NHS have repeatedly demonstrated higher family assent rates for donation when SNODs are involved at an early stage, according to the audit report published by the National Office of Clinical Audit (NOCA).

Background

HSE Organ Donation and Transplant Ireland (ODTI) commissioned NOCA to develop a potential donor audit (PDA) for Irish hospitals as recommended in the PDA Feasibility Study Report (NOCA, 2022). The feasibility study had underlined strong international evidence demonstrating an improvement in organ donation rates following national implementation of a continuous PDA. It noted the rate of organ donation in Ireland was 18 per million population (PMP) compared to 25 PMP in the UK and over 45 PMP in Spain.

The study recommended the development of a PDA starting with implementation in one hospital in each of the six Hospital Groups and expanding to all acute hospitals, including paediatric hospitals, as ODNM resources increase.

The overarching aim of a PDA is to ensure that every person approaching the end-of-life in an ICU or emergency department (ED) has the possibility of becoming an organ donor, where this is appropriate. The objectives of the pilot were to quantify the potential for organ donation in the participating hospitals; assess if the PDA identified opportunities for improvement in organ donation and where in the patient journey these opportunities occurred; identify the reasons for a non-donation outcome; and systematically assess the degree to which best practice standards in organ donation are met.

Data were collected over a three-month period (November 2022 to February 2023) in six ICUs. These settings have a “long-established culture of organ donation”, noted the report. The participating hospitals were Beaumont Hospital, Dublin; St James’s Hospital, Dublin; the Mater Misericordiae University Hospital, Dublin; Cork University Hospital; University Hospital Galway; and University Hospital Limerick. Last year, these hospitals accounted for half of all deceased organ donors nationally.

The pilot was coordinated in the six hospitals by an ODNM. The ODNMs are clinical experts in organ donation and advocates for patients, donors and their families. According to the report: “They are an integral part of the ICU team and are a resource, in conjunction with the clinical lead in organ donation (CLOD), in identifying and managing the patient in order to ensure the best outcome for organ donation.”

Findings

Thirty per cent (69/231) of ICU deaths met the PDA development project potential donor criteria.

The PDA demonstrated the degree to which best practice standards in organ donation were met in relation to potential and eligible (ie, medically suitable) donors. It reported on rates of brainstem testing, referral, approach, and assent, and the percentage of families of eligible donors who were approached with the Hospital Group ODP present. The audit showed how well the process was working in the ICUs but also identified areas for improvement (eg, there was “considerable room for improvement” in the rate of families approached at the recommended time, which was 53 per cent).

In keeping with international experience, 10 per cent (23/231) of people who died in ICU did so in circumstances where organ donation might have been possible. Of these eligible donors, 13 went on to become organ donors.

Ten cases were initially considered as potential missed opportunities for organ donation when the data were analysed. Of these, three cases would not have proceeded to organ donation (one patient sustained cardiac arrest before brainstem testing, and two potential donation after circulatory death patients were deemed unlikely to die within 90 minutes of withdrawal of life-sustaining therapy and subsequently did not die within 90 minutes).

Of the remaining seven cases, four fulfilled the criteria for brainstem testing but did not undergo testing. In one case, there was reluctance to approach the family, and in the three other cases, organ donation was discussed either prior to a discussion about brainstem testing or during the prognosis conversation. In the final three cases, where the criteria for brainstem testing were fulfilled and such testing was carried out, organ donation was discussed during the prognosis conversation in one case; in the other two cases, families were approached by senior intensivists and/or ODNMs at the correct time (following international best practice organ donation processes), but did not assent to organ donation.

In summary, there were five cases where best practice organ donation processes were not followed. “While it could be speculated that some of these cases might have resulted in donation episodes had best practice been followed, this is not guaranteed – overall, the family consent rate was as good as that in the UK,” according to the report.

Based on the findings, the authors estimate a total of three potential additional donors during the pilot. If the pilot project was to be replicated for a full year and across the entire country, a total of 24 additional donors could possibly be realised.

Recommendations

The report outlined four key recommendations, namely implementation of the PDA nationally in all acute hospitals with ICUs and/or EDs (described as urgently required for January 2024); provision of an agreed list of contraindications that can be operationalised for clinical practice to support the PDA; use of the findings to inform a set of national guidelines for organ donation; and development of a quality improvement forum for healthcare professionals on organ donation and transplantation.

Dr Maria Kehoe (PhD), PDA development project Lead, said a proposal has been submitted to the HSE 2024 estimates process to support roll-out of a
PDA nationally.

Clinical Lead of the PDA development project, Dr Alan Gaffney, told the Medical Independent the team was satisfied with the dataset and the integrity of the data.

Dr Gaffney said to maximise the potential for organ donation, “we would like to see organ donation personnel in all ICUs, and we would like to see the audit in place across all the ICUs.” Dr Gaffney noted that HSE ODTI intends to increase ODP numbers and has strongly supported the PDA project.

In regard to the findings on the timing of the family approach, Dr Gaffney underlined the importance of separating the ‘prognosis’ conversation from that of potential organ donation. He said international evidence showed families were more likely to assent to donation if the approach was correctly timed.

Ms Martina Goggin, Public and Patient Interest Representative, PDA development project steering committee, said the “timing is vital, and I think the trained personnel are also vital”.

Ms Goggin’s son Éamonn became an organ donor after his death following a road accident in 2006. She recalled that the possibility of organ donation was broached by a consultant anaesthesiologist at an appropriate time. Subsequently, a specialist in organ donation was present to provide comprehensive information and to answer the family’s questions.

“There are a lot of questions – you don’t even realise you would have so many questions, but there are,” she said. “To have trained personnel to be able to answer very honestly and openly, and succinctly, it makes a huge difference – it did to us, and that is why I felt when I was asked to participate in the report, I thought that that was hugely important, that that side of the question would be considered, and that the donor family views would be very much part of the report.”

Some time prior to her son’s accident, Ms Goggin happened to raise the topic of organ donation in conversation with Éamonn. They had both expressed a wish to be donors if such circumstances arose. In the PDA report, Ms Goggin wrote that the comfort and consolation she and her husband felt “in knowing that our son performed the noblest act of generosity by giving the gift of life to others is like a light that continues to shine even on the darkest days”.

Future

Dr Gaffney, a Consultant in Intensive Care  Medicine and CLOD at RCSI Hospitals, said there are “very specific” circumstances whereby a person has the potential to be an organ donor following death.

“Despite the huge numbers of deaths every year in the country, there are only very, very few that can potentially become organ donors. And that leads me on to the next point, which is that the Government is hoping to bring through the Human Tissue Bill this year, and we as an intensive care community feel that it is unlikely that the Human Tissue Bill will make any difference to the organ donation rate in Ireland.

“In fact, legislation for opt-out donation has never made a difference to organ donation rates anywhere in the world. What makes the difference is how well we recognise organ donors within the hospital, how well we approach families, how well we do brainstem testing… they are the things that will make a difference to organ donation rates. And just to point out that our organ donation consent rate was [just under] 70 per cent in this small pilot study, which is very comparable to international figures.

“So, we have to be very careful that we never blame the public for ‘low’ organ donation rates, the public are very much behind organ donation, and we just have to do as good a job as we possibly can to offer that possibility to everybody.”

Responses

Commenting on the NOCA report, Director of HSE ODTI Prof Jim Egan stated: “The findings of the report demonstrate that a PDA should be deployed nationally as soon as possible…. This will be a vitally important mechanism to inform future development of organ donation and transplant services. To this end, ODTI has secured funding to continue the PDA in the six participating ICUs until the end of the year. Furthermore, we have made a submission under the national service plan for 2024 for funding to roll-out the PDA to all hospitals with ICUs or emergency departments.

“A national PDA is recognised as an international standard that forms an integral pillar of organ donation and transplant in countries such as the UK, Australia, the USA and Spain – the world leaders in organ donation. It is an essential development to inform national guidelines and to enable us to improve organ donation and to offer the best possible end-of-life care to our patients and their families. It will be key to ensuring our national service harnesses benefits from pending legislative change, advances in medical and surgical practice in specialities aligned with organ donation and transplant, and technological advances in organ care.”

At any one time, around 600 people are waiting for a transplant, stated Prof Egan. “Organ donation saves lives and we encourage the public to share their views on organ donation with their families and loved ones so that their wishes are made known.”

A spokesperson for the Irish Kidney Association (IKA), which has been calling for an annual clinical audit of organ donation practices for many years, recognised “the commitment of ODTI to the advancement of best practice in the delivery of organ donation and transplantation in Ireland”.

“Whilst the commitment to an annual potential donor audit is commendable and the work of NOCA is excellent, the Irish Kidney Association would like to see provision for the audit included in the Human Tissue Bill, which is expected to be transposed into law later this year. In this way it would put it on a statutory footing and ensure that its delivery is not at risk of the vagaries of changing budgets or possible future recruitment freezes.”

The IKA is also advocating for the inclusion of an opt-in register to run alongside the opt-out register proposed in the Bill, and greater public education around organ donation. The presence of trained specialists in organ donation during the approach to families was also vitally important, it added.

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