Understanding Organ Donation in the UK

The introduction of the opt-out system for organ donation in the UK, established under the Organ Donation (Deemed Consent) Act, has opened up important discussions about balancing personal choice with the collective need for organ availability. Under this system, people are presumed to consent to organ donation unless they actively choose to opt out.

While the policy is designed to save lives by increasing the number of organs available for transplantation, it recognises that some people may prefer to opt out due to personal, religious, or other deeply held beliefs. In this guide, we’ll explore the opt-out system, how to navigate it, and reasons why you may choose to.

What is organ donation?

Organ donation involves donating organs and tissues after death to save or improve lives. In the UK, a shift to an opt-out system means that unless a person has registered a decision not to donate, they are considered a potential donor. 

However, if someone has not registered their decision, they will not automatically be added to the queue for organ or tissue donation. In such cases, when a person dies without a recorded decision, their family is always consulted for permission before any donation takes place. While the family has the right to decline, it is always advisable to clearly express your wishes regarding organ donation as part of end-of-life planning or to have open conversations about it with your loved ones.

The organ donation system in the UK: a historical overview

The UK’s organ donation system has evolved significantly over the years to address the growing demand for life-saving transplants.

Early years

• 1950s and 1960s: Organ transplantation began in the UK, with kidney transplants being the first major success. At the time, organ donation was entirely voluntary, with no centralised system for coordination.
• 1968: The UK passed the Human Tissue Act (revised in 2004), which formalised the legal framework for organ donation. This law established that organ retrieval required explicit consent from the donor or their family.

Development of the NHS organ donor register

• 1994: The NHS Organ Donor Register was introduced, creating a national database where individuals could voluntarily record their consent to organ donation. This system aimed to streamline the process and ensure that donor wishes were respected.
• 2000s: Public awareness campaigns were launched to encourage people to join the register, as the number of patients waiting for transplants continued to outpace the number of available donors.

Shift to the opt-out system

• 2010s: Discussions began about adopting an opt-out system to address the organ shortage. Evidence from other countries, such as Spain, demonstrated that these systems could significantly increase donation rates.
• 2015: Wales became the first UK nation to implement an opt-out system under the Human Transplantation (Wales) Act 2013. Adults were considered donors unless they explicitly opted out.
• 2019: England passed the Organ Donation (Deemed Consent) Act, also known as Max and Keira’s Law, named after a young donor and recipient whose story inspired public support.
• 2020: The opt-out system was introduced in England, meaning adults are presumed to consent to organ donation unless they opt out or belong to an excluded group (e.g., children under 18, those who lack mental capacity).
• 2021: Scotland followed suit with its own opt-out system under the Human Tissue (Authorisation) (Scotland) Act 2019.

Current system

Today, the UK operates a deemed consent system across England, Wales, and Scotland, with Northern Ireland still using an opt-in system as of now. The NHS Organ Donor Register remains active, allowing individuals to explicitly record their decision to opt in or out.

Impact and challenges

• The move to an opt-out system has increased the pool of potential donors, though education and public awareness remain crucial for maximising its impact.
• Family involvement is still key, as families are consulted to confirm the donor’s wishes, even under the opt-out system.

What is deemed consent?

The opt-out system: a key change

Introduced under the Organ Donation (Deemed Consent) Act, this system is designed to increase the number of available organs for transplantation. It applies to adults across England, Wales, and Scotland, with some differences in regional policies.

Adults who wish to opt out must actively register their decision to ensure their preferences are respected. It’s important to note that certain groups, such as children under 18, people who have lived in the UK for less than 12 months, and those who lack the capacity to make informed decisions, are excluded from the opt-out system.

This safeguard protects vulnerable people or those unfamiliar with the system, making sure they are not automatically included.

Purpose of the opt-out system

The opt-out system was established to address the urgent need for organs in the UK. By increasing the pool of potential donors, the system aims to save more lives. Public education campaigns have played a crucial role in raising awareness about this change, with the aim to make sure people are informed about their options.

Reasons people opt out of organ donation

While many support organ donation, some may choose to opt out based on personal beliefs or misunderstandings about the process. 

• Personal beliefs or preferences: There are many different views regarding what to do when someone dies. For some, religious or cultural beliefs inform their decision to opt out. Others may feel that organ donation does not align with their values or expectations for end-of-life arrangements. It’s important for people to make a choice that reflects their personal convictions and morals.
• Religious reasons: Religious views on organ donation often vary within denominations, communities, and even families. Many objections are based on interpretation, and individuals are encouraged to consult religious leaders or texts for guidance that aligns with their faith and personal beliefs. Some Islamic perspectives, certain interpretations of Orthodox Judaism, and Shintoism may express opposition to organ donation.
• Cultural beliefs: Certain cultural beliefs can create barriers to organ donation. Distrust of medical systems, fear of interfering with the afterlife and family honour and ancestral respect may leave some people wary of agreeing to donate their organs.

Lack of information and misunderstanding

Concerns about how organs are used or uncertainty about the donation process may lead some to opt out. Seeking accurate information from reliable sources and discussing the topic with healthcare professionals can help address these fears and support an informed decision.

How to opt out of organ donation in the UK

Choosing to opt out of organ donation is a straightforward process, but it requires careful consideration and communication with loved ones.

Registering your decision

To opt out, follow these steps:

1. Visit the NHS Organ Donation website.
2. Complete the registration form with accurate personal details.
3. Confirm your decision to opt out.

Opting out does not affect your medical care, and you can update your decision at any time.

Informing family members

It’s a good idea to discuss your choice with your family or those appointed to handle details after your death. At the time of death, the appointed person or people are consulted about donation wishes, so making certain they understand your decision helps avoid confusion, highlighting the importance of writing a will, or putting a funeral plan in place.

Reviewing and updating your decision

Preferences about organ donation can change over time, and you can revisit your choice periodically and make updates if necessary. Opting back in is easy and can be done through the same registry. 

The role of families in final decisions

While deemed consent provides a default framework, families are still consulted and have the opportunity to refuse donation. Open discussions about organ donation and updated decisions within families can clarify preferences and help ensure that the person’s wishes are honoured.

Withdrawing from the organ donation register

For those who previously registered as donors but now wish to withdraw, the process is simple:

Steps to remove your name

To remove your name from the organ donation register:

1. Contact NHS Organ Donation online, by phone, or via written request.
2. Provide your details to verify your identity.
3. Ensure you receive confirmation of your withdrawal for your records.

Organ donation and prepaid funeral plans

Organ donation and prepaid funeral plans intersect in several areas, addressing both practical and emotional needs for the person preparing and their families. Here’s how:

1. Streamlining logistics

Prepaid funeral plans allow you to make arrangements regarding your funeral options in advance, which can simplify logistics after organ donation. With these plans, families do not have to worry about coordinating funeral details during what can be an already challenging time. 

2. Honouring wishes

Many who choose to donate their organs also want their plans to reflect their values as they plan their own funeral. Prepaid plans can include specific instructions, such as requests for a ceremony that acknowledges their organ donation or celebrates their life in a way that aligns with their altruistic decision​.

3.Relieving emotional strain

The emotional impact of organ donation can be significant for some families. Prepaid funeral plans can help alleviate the added stress of making financial and logistical decisions during this time, giving families space to focus on their grief and the meaningful impact of their loved one’s donation​. 

4. Flexibility for complex arrangements

Some organ donations involve extended timelines or specific procedures. Aura’s prepaid plans are designed to accommodate unique circumstances, ensuring that all funeral details are handled with care, including transportation and preparation. At Aura, our dedicated Aura Angels take on the responsibility of managing potentially complex arrangements with medical facilities on behalf of families. As expert funeral arrangers, they provide unparalleled support, while also offering a compassionate ear when families need it most.

Benefits of knowing your organ donation status

Being clear about your decision regarding organ donation can offer significant personal and societal benefits. 

An empowering personal choice

Taking control of your organ donation status means that your preferences are sure to be respected. This clarity can reduce stress and ambiguity for your loved ones during what might be an overwhelming time.

Supporting the organ donation system

Whether opting in or out, making an informed choice contributes to a transparent and efficient organ donation system. Your decision, no matter what it is, plays a part in supporting those in need of life-saving transplants.

FAQs about organ donation

Can I change my mind after opting out?

Yes, you can opt back in at any time by updating your registration on the NHS Organ Donation website or contacting their support team.

Does opting out affect my medical treatment?

No, opting out has no impact on the quality or availability of your medical care. Medical professionals prioritise treatment based on clinical needs, not organ donation status.

What happens if I don’t register my choice?

If you do not register a choice, deemed consent will apply unless you belong to an excluded group. It’s crucial to register to opt out if that’s what you’ve decided, and  communicate your wishes to your family to avoid misunderstandings.

Aura’s prepaid funeral plans

The UK’s opt-out system for organ donation encourages people to think critically about their end-of-life decisions. We hope that this article about the system has been of use to you, and that you’re now more informed about your options regarding organ donation. 

As a family-run company, we are committed to providing you with the kind of care and respect we would offer our own families. Our Trustpilot reviews reflect the quality of our services, and we are proud to be the UK’s highest rated all-inclusive prepaid direct cremation plan provider.

Our plans provide an affordable alternative to traditional funerals, offering peace of mind for you and those closest to you. For more information, please feel free to get in touch with our team, or download your free Aura funerals planning brochure on the link below.