The Organ Donation Study
On 1st December 2015 Wales changed the ways we give consent to organ donation. Every citizen of Wales is now presumed to support organ donation unless we express otherwise during our lifetime. This is called deemed consent. But people are complicated, and the pathways to organ donation are complex. We needed to learn about the family member(s) organ donation experience after the law changed to evaluate the impact of this important policy from the multiple perspectives.
Researchers collected information on every case (211) where the person who died was voluntarily resident in Wales and died in Wales or England over the first 18 months of implementation. We did this by partnering with NHS Blood and Transplant (NHSBT) Specialist Nurses in Organ Donation whose specialist skills and sensitivities were able to ethically recruit family member(s) after their relative who died was a potential organ donor. We interviewed over 85 family members directly, collected family questionnaires, and questionnaires from the Specialist Nurses in Organ Donation who reflected on their conversations with the potential donor families. We also interviewed NHSBT specialist nurses, managers and practice development specialists. NHSBT data, publicly available data, Welsh Government surveys and the research teams field notes completed the comprehensive data set.
All the data was mapped, and cross checked by the research team and supported by specialist software to extract key messages, finding and recommendations for future similar interventions.
- Most people didn’t remember the Welsh Government led implementation media campaign
- Family members didn’t accept/or understand that they were no longer the decision makers with regards to organ donation
- Most people didn’t support that ‘doing nothing’ was a positive choice that supported organ donation
- People in Wales can now make their organ donation decision via a number of pathways; they can register on the Organ Donor Register, verbally express it via a conversation with a loved one, or consent can be deemed. People can also appoint a representative and in some cases the previous ‘opt-in’ system still applies*. It was not always easy for the specialist teams to unpack and document accurately the correct consent pathway from the personal views of the grieving family members.
- Family members whose loved ones consent was deemed and who supported the deemed consent were helped by the changes in Wales. They felt that they were doing the right thing for their loved one.
- Consent rates improved but the number of transplants stayed the same.
The study developed an integrated team of research, clinical and non-clinical specialists. Outcomes have been taken up by policy makers, clinicians and the public. Below is a summary of some of the recent impact on:
Welsh government launched a new campaign focussed on the changed role of the family in decisions making and organ donation, you can view the campaign here. http://organdonationwales.org/?lang=en
Understanding why people do not register on the organ donor register or why family member(s) still feel unable to support the deceased persons decision, will have an impact on the design of future interventions to improve organ and tissue donation rates in Wales and the UK. Our findings have been shared with England and Scotland policy makers. They are considering the results when they implement similar systems in the near future.
The study team jointly facilitated with NHS BT an ‘implications for practice development day’ with 32 Specialist Nurses for Organ Donation in Wales, to support specialist nurses to support grieving family members while at the same time ensuring that the person who died decision is upheld. The subsequent professional development opportunities have been designed to lessen these challenges and reduce frustrations.
The research team attended Specialist Nurse Organ Donation monthly team meetings and regularly invited partners to attend research team meetings. NHSBT are more comfortable being part of and co-partnering in research projects.
The study found gaps in bereavement care needs, specialist nurses have developed a new service ‘befriending’ service to support family member(s) in the local catchment areas.
Patients and the public
There were 28 cases where the consent was deemed. Transplants are highly cost effective and are the treatment of choice for many patients. More people will have received transplants which have tangible benefits in improving their quality of life and wellbeing.
The study connected with over 50 individuals, volunteers and third sector organisations – especially those representing BAME groups who are more confident being part of a research study and want to stay involved in research.
Quotes from patient representatives
‘We consider The Organ Donation Study to be an excellent example of a research project that has included lay people, patients, donor families, plus many organisations throughout Wales. The study highlighted the need for people to talk to their loved ones about their wishes on Donation. We are confident that the findings will be of great benefit to those involved in the potential introduction of the opt out system in England and and other Nations of the UK.
The outcomes of the study have been presented through a wide range of media/ publications at a wide range of venues hence achieving its aim in highlighting the need for open discussion on the subject of organ and tissue donation.’
Funders Health and Care Research Wales have published the study in: their research magazine @ResearchWales (https://issuu.com/healthandcareresearchwales/docs/_researchwales_issue_one . pg14.15) written a case study for celebrating the NHS@70, https://www.healthandcareresearch.gov.wales/news/wales-leading-the-way-in-organ-donation/ and published a case study report to feature shortly in their ‘spotlight’ case studies. We have won awards from Kidney Research UK to disseminate at the leading international organ donation and transplant congresses.
We won the South Wales Argus Research with Impact award.
Read our publications, legacy documents and study highlights here. http://organ-donation-project.bangor.ac.uk/