Attitudes to organ donation in Wales

The aim of the study was to explore the impact of the Act on consent for deceased organ and tissue donation in the new ‘soft opt-out’ system. A secondary aim was to further build research capacity in NHSBT and Patient and Public Involvement (PPI) representatives in Wales.

The research questions were:

1. What impact and changes has the Act and media campaign had on the views and decisions of families of potential organ donors in Wales?
2. What were the views of the deceased person and how did families take account of the deceased person’s view in the decision-making process?
3. What are the views of families of the deceased person on the shift in relationship with the Government and healthcare services; organ donor registration; deemed consent; express patient decision and role of appointed representatives; and the changed role of families in decision-making in a ‘soft opt-out’ system?

The objectives were:

1. To ascertain a broad overview of anonymised family views, actions and outcomes from organ donation conversations in Wales for an 18 month period following implementation of the Act.
2. To explore in greater depth the perspectives and experiences of families who were involved in a donation conversation.
3. To explore the perspectives of SNODs and their managers covering Wales to contextualise potential donor family views, experiences and decisions.
4. To contextualise findings with Welsh Government survey data and contemporaneous and previous NHSBT activity reports on organ donor registration and organ donation in Wales.
5. To further develop research capacity and capability in NHSBT and patient and public representatives in Wales.

Prospective mixed-method co-productive study undertaken with National Health Service Blood and Transplant (NHSBT), and multiple patient/public representatives.

The study was designed to collect information on all cases who meet specified criteria (≥18 yrs, deceased person voluntarily resident in Wales and died in Wales or England) whose family were approached between 1/12/15-31/517).

Data for analysis includes: NHSBT routinely collected anonymised audit data on all cases; Specialist Nurse in Organ Donation (SNOD) completed anonymised form for all cases documenting their perception of the families’ understanding of the Act, media campaign, and outcome of the donation approach; Questionnaires and depth interviews with any family member or appointed representative (minimum 50 cases). Additional focus groups and interviews with SNODs.

Anonymised donation outcomes and registration activity reports for Wales provide additional

DATA ANALYSIS

With consent, interviews were digitally recorded and transcribed verbatim in the original language.

The Framework approach for analysis of applied policy research was used for all narrative textual data from questionnaires, focus groups and interviews. NVivo software supported textual analysis.

Key themes and categories were identified from the different types of evidence.

The final themes and their dimensions from the data were further refined and used as the basis of charts (or matrices).

This allowed for themes to be compared and displayed for questionnaires and interviews, and for variations and deviant cases to be highlighted within each dataset.

This process enabled a range of factors that impact on decision-making including gender, relationships, family dynamics, age and the way that consent was obtained opt in/out, verbally expressed, deemed or family consent, to be highlighted and explored.

COMPARATIVE ANALYSIS AND OVERARCHING SYNTHESIS

We used Oliver’s synthesis framework for juxtaposing evidence across all of the data.

We organised the data by donation decision (opt in opt out on organ donation register; expressed decision, deemed consent) and mapped it against whether families supported the donation decision and why.

We layered the descriptive numerical and narrative findings onto the framework to synthesize findings across the different types of evidence, working within each of the spheres of influence (the patient decision, family, NHSBT, NHS and clinical care, the law, the media campaign, previous comparative data etc).

Juxtaposing different numerical, narrative and temporal evidence in this way on the same phenomenon of interest enabled us to identify patterns, explanations, mechanisms and disconfirming cases.

ETHICS AND DISSEMINATION

Approved by NHSBT Research, Innovation and Technology Advisory Group (RINTAG) on 23/10/15; Wales Research Ethics Committee 5 (IRAS190066; Rec Reference 15/WA/0414) on 25/11/2015, and NHSBT R&D Committee (NHSBT ID: AP-15-02) on 24/11/2015.

REGISTRATION

The protocol was registered on the Health and Care Research Wales Clinical Research Portfolio.

Study ID number 34396, www.ukctg.nihr.ac.uk

The full study protocol has been published in BMJ Open.

There were no deviations to the protocol.

THE COMPLETED DATA SET

Data were collected on all of the 205 approaches to relatives of potential organ donor patients between 01.012.15-31.05.17 (18 months) in Wales and 6 cases where the deceased person was voluntarily resident in Wales and died in England.

182/211 deceased patients came under the auspices of the Act. Sixty-three in-depth interviews with 81 family members of 60 patients who were potential/actual organ donors, and 2 focus groups or individual interviews with 20 NHSBT professionals were also carried out.

An End of Study Celebration Event was held on the 5th of September at Cardiff City Hall.

The research team presented the key findings of the study to an audience which included Welsh Government, funders Health Care and Research Wales, study partners NHS BT, PPI's, key stakeholders and collaborators.

Vaughan Gething AM for Health, Well-being and Sport provided a speech via a podcast.

Professor Jean White - Chief Nursing Officer provided the response which included special praise for Specialist Nurses.

Prof Chris Jones Deputy Chief Medical Officer provided feedback and acclaim for such a co-productive study, and Phil Walton Regional Manager South Wales closed the meeting.

Janette Bourne – Director of Cruse Bereavement Care Cymru, Patient and Public Representative and Co-partner provided a talk to celebrate the high patient and public involvement in the study.

THE MEDIA CAMPAIGN

Overall the media campaign worked and people behaved as intended by:

• Talking about organ donation with their family
• Registering their decision on the organ donor register. 38% of people in Wales are now registered in on the organ donor register.

6% have opted out of donation. This is less than Welsh Government expected (10%).

But the media campaign was not memorable. It is unclear if these behaviours will be sustained without a new campaign.

The campaign missed the role of the family. Family member(s) did not understand that they were no longer the decision maker and that their primary role is now to support their loved ones decision made in life.
The Act.

Overall people in Wales support the changes as a positive action taken by the people of Wales.

But people in Wales still do not understand deemed consent.

It is difficult for people in Wales to understand ‘doing nothing’ as a positive choice that supports organ donation

The above concern has little to do with support for organ donation or the Act. The worry is that the families may not get it right for their loved one because the family ultimately don’t know one way or another.

Family member(s) whose loved one consent was deemed (and who supported the deemed consent, felt supported by the changes in the law, that they were doing the right thing for their loved one.

PROFESSIONAL PRACTICE

Specialist Nurses Organ Donation have a vital role to play in helping the family to support the deceased decision.

SNODs have sometimes struggled to implement the Act as intended:
A legacy of language ‘wishes’ versus ‘decisions’ has proven more difficult to shift in practice than anticipated.

SNODs can sometimes struggle with the dual (and sometimes conflicting role) of ensuring that the organ donation decision is supported while at the same time providing care for the grieving family.

The Act has introduced at least 13 consent pathways for SNODs to recognise and document.

The standards of evidence (written or witnessed conversation) have proven difficult to implement in practice. As a result it is still very difficult for SNODs to establish the decision made in life by the deceased person and the personal views expressed by the grieving family. The Act has not helped this dilemma.

MISCELLANEOUS

Hospital facilities for donor families were sometimes lacking.

Sometimes the families’ perception of the standard of NHS/NHSBT care affected their experience and donation decision.

The time taken to donation in many cases was perceived as too long.
Families had many unmet bereavement care needs.

A full report of the study findings has been shared with Welsh Government, NHSBT, NHS and the Chief Nursing Officer (Prof Jean White) and the Chief Medical Officer (Dr Frank Atherton). The full report is available on request.

EXTENSIVE PATIENT AND PUBLIC ENGAGEMENT

The study has connected with over 50 stakeholders representing a range of organisations across Wales. It includes a high cohort of individuals and third sector networks representing BAME populations in Wales.

Patient and public representatives were involved at every stage of the study and have co-presented multiple times with the team at events and conferences. The study has received acclaim for its high PPI engagement.