The public consultation launched by the UK Government three months ago, on introducing a soft opt-out consent for organ and tissue donation in England, ended this week. A change in the law would mean that people would no longer need to give consent to be considered an organ donor, and people who do not want to donate their organs after their death would have the ability to opt out.
Roy J Thomas, Chief Executive of Kidney Wales, championed the legislation to be modified in Wales from 2007 to 2015. Today, he gives his view of why such a policy is urgently needed in England; and stresses the importance to establish a Deemed Consent Advisory Board to oversee its implementation and to gain public trust.
It is a fact that you are more likely to need a transplant than to donate an organ. Organ donation remains a sensitive matter, intricately linked to tragic circumstances. It occurs at a time of great emotional distress, in the event of a human dying and potentially saving another person’s life.
Organ donation is a complex decision-making process which brings a highly charged conversation, for both the donor’s family, often faced with a sudden loss, and for the patient and his family, waiting for a lifesaving transplantation – a plight difficult to understand for those who have not experienced it.
Because it is such a deeply social and ethical subject, organ and tissue donation legislation relies heavily on public consultation. And in turn, a change in law, if well communicated, can bring about a change in culture and in the mindset of the public.
Today, UK organ donor rates fall behind the rest of more progressive developed countries. If introduced properly, deemed consent laws are estimated to increase the availability of organs by 20 to 30 percent in England, and dramatically change our culture of organ donation in the UK in a very positive and progressive way.
To ensure a successful transition, we need to support not only the passage of the new law, but also the creation a Deemed Consent Advisory Board. The latter would oversee the implementation of the revised legislation, advise the Secretary State for Health and Social Care on key priorities, and communicate effectively to the wider public – three crucial factors that will determine the eventual outcome. This may guide NHS Blood and Transplant (NHSBT) or replace it with the Advisory Board consisting of patients and the third sector, who are usually dictated to and whose views are usually in the margins.
England cannot be compared to Wales in organ donation in view of size of population and the larger Cities such as London, Manchester, Birmingham, Leeds, for example, who have distinct and diverse cultural identities and views.
In December 2006, the UK Government set up the Organ Donation Taskforce to identify barriers to organ donation and recommend actions needed to increase organ donation and procurement within the current legal framework. But the Taskforce failed in its recommendations and targets, because the legal framework itself needed to be re-thought and because it did not sufficiently engage the population. Lessons can be learnt and such a Taskforce not replicated or resurrected.
In 2013, the NHS Blood and Transplant published a commendable strategy to improve organ transplantation rates, ‘Taking Organ Transplantation to 2020’. The Wales Action Plan, published the following year, set out what needed to happen in Wales to deliver this strategy. It worked in parts and gave a vision but the new law will change this-it was never envisaged by NHSBT-never in its plans- why?And why did it not advise UK Government as did the Chief Medical Officer some 10 years ago.
In 2015, Wales became the first country in the UK to move to a soft opt-out system of consent to organ donation – ‘soft’ because if individuals are not registered did not inform their relatives of their decision to donate, the family may not support deemed consent and over-ride the organ donor registration.
As a result, more people in Wales are consenting to have their organ donated than any other UK country, with a 72% consent rate and approximatively 24.3 donors per million population (PMP), according to the latest statistics. This is the paradigm shift but it is still early days. After years of discussion, it is now “cool” to be an organ donor and deemed a good thing especially by the younger population. It creates a selflessness attitude.
For similar results to be achieved in England, and in the rest of the UK, the Government must continue to work closely with medical professionals, NHS managers but above all the public including patients and patient representatives, the voluntary sector and ethicists.
Moving to a deemed consent system of organ and tissue donation will require significant initial costs covering communications and the infrastructure associated with the Organ Donor Register. These costs are manageable but need to be overseen.
NHS Blood and Transplant should be accountable if it is the body that will deliver, and the £13million plus the £5m million extra it spends on communications over the first 3 years should be spent wisely.
Establishing a Deemed Consent Advisory Board, responsible for overseeing implementation of the deemed consent law; questioning the efficiency, the decisions and the expenditures of the NHS Blood and Transplant; advising the Secretary State for Health and Social Care; making sure all ethical considerations are evaluated; and gaining trust of the public; is a moral obligation if this law is going to succeed in England.
The system currently in place in England does not meet the society’s needs, and we cannot allow more people to die waiting for an organ transplant while prevaricating on a new system. Inaction costs the life of more than 500 people who died waiting for a transplant last year alone in the UK.
Deemed consent guarantees equality of opportunity for all, while preserving an individual’s right to decide to opt out from organ donation if they want to – and if England follows the examples of Belgium and Wales, not more than 10% will opt out. It is wrong to refer to Spain as it does not have an opt out register but remains the highest countries in the World in donating organs and saving lives.
The public consultation was first step towards a deeper cultural change in our perception of organ and tissue donation in the UK, and towards a more caring society. We must now put everything in place to ensure the law is voted for in Westminster, implemented and communicated, urgently and thoroughly.
Professor Roy J Thomas LLB (Hons)
College of Human and Health Sciences