New organ donation law: giving you control

Around 6,000 people in the UK are on the transplant waiting list; and in 2018 alone, at least one person a day died while waiting for a transplant, according to the NHS. New laws on organ donation consent are coming into force in Spring 2020 which the government hopes will help save hundreds of lives.

The government says 80 per cent of people in England support organ donation but just 38 per cent have opted into the current NHS Organ Donor Register.

‘This often leaves bereaved families with difficult decisions to make,’ says Elliot Lewis, wills and probate solicitor with Thackray Williams. ‘If a family is not aware of someone’s wishes, then most do not consent to their loved one’s organs being donated. Whatever your wishes, this new law is a useful reminder that it is always a good idea to formalise your wishes in regard to the end of your life.’

What presumed consent will mean

When the Organ Donation (Deemed Consent) Act 2019 comes into force in Spring 2020, anyone who dies will be presumed to have consented to donate all their organs unless they have specifically opted out or their relatives refuse permission.

Similar rules have already been in force in Wales since 2015.

Presumed consent will be limited to routine transplants and will not extend to rare procedures such as face or hand transplants.

What it means for you

If you are 18 or over, you will automatically be considered a potential organ donor, unless you decide to opt out or you are excluded under the rules. If you are happy for your organs to be donated after your death, ‘deemed consent’ means you do not need to do anything.

You need not worry that your organs will be harvested as soon as you die without any consultation. Your family will be consulted, and your faith and beliefs will also be taken into account before organ donation goes ahead.

If you are prepared to donate some organs but not others, then you should register as a donor with the NHS Organ Donor Register stating which organs and or tissue you are happy to donate.

Applicable only in England

The new law will only apply to adults in England; and you must have lived in England for at least 12 months before your death for the presumption to apply.

The law will not apply to those who lack mental capacity to understand what presumed consent means for a significant period before their death. For example, if someone was diagnosed with dementia in 2019, and their mental health rapidly deteriorates and they die a year later, there will be no presumed consent and their organs will not be harvested.

How to opt out

It is relatively simple to opt out of deemed consent, with two main mechanisms available:

The NHS Organ Donor Register: You should opt out of deemed consent by recording your decision not to donate your organs on the register. If you are considering opting out, take specialist legal advice so you can be certain your ‘opt out’ on the register is effective;
Your will: Think about using your will to record your opt out, as well as dealing with your property and other assets, but make sure you tell your loved ones and give them a copy of your will so that they are fully aware of your wishes while you are still living. If you have no will in place (or you need to review your existing will), now is the perfect time to consider making a will and formally recording your wish to opt out at the same time.

If you choose to opt out, it is wise to tell your family and friends what you have decided. You could also consider asking your solicitor to record your wishes alongside any instructions for your funeral.

Changing your mind

If you change your mind about organ donation, you can simply go to the NHS Organ Donor Register to record or amend your consent status. If you made a will in which you opt out, consider making a new will; or have a codicil drawn up and attached to your will to amend the clause relating to consent (or to add an opt out clause).

Can I appoint others to make the decision for me?

If you want to opt out or you are unsure, and you do not want to make the final decision yourself, consider delegating the decision to others. You can formally appoint up to two individuals with the register to make the decision, though they will need to sign a form in the presence of a witness for it to be effective.

It is crucial to consider who you trust to make this decision for you, and you should discuss it with them first, as it could be a very difficult decision for them to make.

Also, if you are considering appointing attorneys under a Health and Welfare Lasting Power of Attorney, you could make known your wishes about organ donation consent as part of this process as well as other important decisions relating to your healthcare.

Safeguards for individuals

The law includes an important safeguard known as the ‘soft opt-out’ under which relatives can make known any unregistered objection of the deceased to organ donation that the deceased had.

For example, if your family know you have an objection to donating your organs, whether or not you register it, you would not be considered a potential donor.

If you are identified as a potential donor, specialist nurses will discuss donation with your family to ensure your wishes are respected.

The government is planning a public awareness campaign to ensure people understand what the new rules will mean in practice.