Max & Keira’s Law: Organ Donation & Organ Transplant (Deemed Consent) Act
Updated: Dec 16
Did you know that in 2020, England was shifted into an opt-out organ donor system? Organ donation has been a widely debated NHS hot topic for many years, with the aspect of “presumed consent” being particularly contended.
In your UK Medical School Interview, you will be expected to have the knowledge to hold a conversation with your interviewer about organ donation systems. Being familiar with Max and Keira’s Law and the current opt-out system will help you stand out as an excellent student.
The government publicly announced that the legislation would be commonly referred to as Max’s Law, in recognition of all the campaigning Max Johnson and his family were doing when Max was waiting for a heart transplant and have continued to do since receiving the heart he so desperately needed.
This article provides you with everything you need to know about Max and Keira’s Law, the new opt-out organ donation system, and how this came about.
Max and Keira’s Law Summary - What Do I Need To Know?
Max and Keira's Law is an opt-out organ donation system in England, effective from May 2020.
It presumes consent for organ donation unless individuals explicitly opt-out.
The law aims to increase the number of organs available for transplantation.
It is named after Keira Ball, who saved multiple lives, and Max Johnson, who received her heart.
Max and Keira’s Law addresses the urgent need for more organ donors in England.
Exclusions include children under 18, individuals lacking mental capacity, and non-residents living in England for less than 12 months.
Public awareness campaigns are crucial to inform people about their rights and how to opt out.
What Is An Organ Donor?
An organ donor is a person who donates their organs and tissues. Donors can be either live, or deceased.
Which organs can living donors donate in the UK?
Organs and tissues that living donors can donate include:
Organs
1 kidney
1 lobe of the lung
1 sample of pancreas
1 sample of intestine
Tissues
Skin
Bone
Bone marrow
Amnion
Blood
Which organs can deceased donors donate in the UK?
In contrast, deceased organ donors can donate:
Organs
Both kidneys
The whole, or part of the Liver
Both lungs
The Heart
The whole, or part of the Pancreas
Intestines
Hands and Face
Tissues
Corneas
The middle ear
Skin
Heart valves
Bone
Veins
Cartilage
Tendons
Ligaments
What Is Max and Keira's Law - Organ Donation Law?
Max and Keira's Law, also known as the Organ Donation (Deemed Consent) Act 2019, is legislation in England that presumes consent for organ donation unless individuals have explicitly opted out.
Max and Keira’s Law amends the Human Tissue Act 2004. The changes made mean that doctors no longer need expressed consent for organ donation in a deceased person, rather they require an absence of refusal to donate.
The patient’s family still hold ultimate decision-making rights over whether organs can be donated.
Max and Keira’s Law aims to increase the number of available organs for transplantation and combat the growing organ transplant lists nationwide.
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Who Was Keira Ball?
Keira Ball was a nine-year-old girl from Devon who tragically passed away following a road traffic accident. When approached by hospital staff at Bristol Children's Hospital, her parents Joe and Loanna decided to go ahead with donating her organs.
Through her organ donation, she saved the lives of four people.
Her kidneys were donated to adults on the kidney transplant waiting list, her liver was given to a baby awaiting transplant, and her heart was donated to a nine-year-old boy, Max Johnson.
Who Was Max Johnson?
At age 9, Max Johnson was diagnosed with dilated cardiomyopathy, a condition characterised by thin, dilated heart muscle which functions poorly.
Max had been on the waiting list for eight months when he received a life-saving heart transplant from Keira Ball.
Following the transplant, Max sent a thank you card to Keira’s family, before meeting in-person.
Why Was Max and Keira's Law Created?
Max and Keira's Law was created to combat the growing need and deficit of organ donors in England.
Before the law was introduced, more than 390 people died annually on transplant waiting lists, highlighting the urgent need for a higher number of organ donations.
One of the significant barriers to organ donation was the Opt-In consent process.
In around 40% of eligible donors who had not declared their organ donor status, the family refused consent and did not support donation.
The opt-out system was introduced to increase consent rates for organ donation, and ultimately the number of organs available for transplantation
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Has The Introduction Of The Opt Out System Increased Organ Donation Rates?
It is unknown whether the implementation of the Organ Donation (Deemed Consent) Act in 2019, has affected organ donation rates, due to the interference of the COVID-19 pandemic. Watch this space for more updates in the future.
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Who Is Excluded From The Organ Donation (Deemed Consent) Act?
There are specific exclusions to who Max and Keira's Law applies.
The following groups of people are excluded from the presumed consent system:
Children under the age of 18: They are not considered to have the capacity to make significant medical decisions independently.
Individuals lacking mental capacity: patients deemed to lack the mental capacity to understand the new law and take the necessary steps to opt out if they wish. This exclusion protects patients with severe cognitive impairments or mental health conditions.
People who have not lived in England for at least 12 months before their death: This exclusion recognises that temporary residents in the UK may not be aware of the opt-out system.
Individuals not living in England voluntarily
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What Was the Timeline for Development and Implementation of Max and Keira's Law?
It took approximately 3 years for Max and Keira’s law to come into effect in England.
1999
The British Medical Association (BMA) began lobbying Parliament for an opt-out organ donation system.
4 October 2017
Prime Minister Theresa May announces plans to change the law to an opt-out system.
12 December 2017
The Government launches a 12-week consultation on the potential Opt-Out organ donation system.
26 February 2019
The Organ Donation (Deemed Consent) Bill passes its third reading in Parliament.
15 March 2019
The Bill receives Royal Assent and is formally approved by the Queen.
25 February 2020:
The government announced that the law will come into effect on 20 May 2020.
20 May 2020:
The Organ Donation (Deemed Consent) Act comes into effect in England.
Which Other Countries Have an Opt-Out Organ Donor System?
Approximately 28 out of 50 European countries have an Opt-Out organ donor system, including Spain, Austria, Belgium, France, and Portugal.
The most notable of these is Spain, which has been hailed as a world leader in organ donation, with the most deceased organ donors per million in the world, and the shortest transplant waiting lists.
In the UK, Wales joined the opt-out system in December 2015, and Scotland moved to an opt-out system in March 2021.
After Max and Keira’s law came into place in England in 2020, Northern Ireland brought in the Organ and Tissue Donation (Deemed Consent) Bill, bringing all 4 nations of the UK into an opt-out system.
The Crown Dependencies, Jersey, Guernsey and the Isle of Man are also all under an assumed consent organ donation system.
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What Are the Ethical Considerations of an Opt-Out Organ Donor System?
There are a number of ethical considerations regarding deemed consent seen in Max and Keira’s Law.
Consent, Informed Decision-Making and Autonomy
In every other aspect of medicine, the concept of assumed consent is unacceptable, and clinicians are required to ensure patients give informed, voluntary and explicit consent to any medical examination, treatment or procedure that they undergo.
A proportion of UK patients will be unaware of the change in the system, and their requirement to register refusal of organ donation if they wish not to donate. This means that there’s a risk that unconsenting patients may end up as deceased donors if their families are not aware of their wishes.
Autonomy describes the right of individuals to make informed decisions about their own bodies. The opt-out system could arguably infringe on patient’s autonomy, especially if they are not adequately informed about opting out.
Cultural and Religious Sensitivities
Cultural and religious beliefs play a significant role in people's views on organ donation and can raise some ethical issues.
For instance, some faiths recognise death differently, and this may cause conflict if patients are classed as brainstem dead and deemed fit for organ donation. Other groups may have religious practices for what happens to the patient’s body after death.
In the 2018 consultation for Max and Keira’s Law, reservations from some faith groups were highlighted. Many of these reservations related to the concept that a lack of refusal could be perceived as informed consent.
Sensitivity to diverse beliefs and practices is crucial to ensure that the system is ethical and inclusive, respecting the values of all societal groups.
👉🏻 Read more: NHS Core Values
How to Answer Medical School Interview Questions on Max and Keira's Law
When answering medical school interview questions on organ donation, it is important to demonstrate a clear, in-depth perspective of the situation. Organ donation is a common NHS Hot Topic that your interviewers will expect you to be able to discuss.
In answering interview questions, you should explain your understanding of the law, and its intention, and weigh up the benefits and ethical concerns in regard to the opt-out system.
You must explain to the interviewer the reasoning behind an opt-out system being introduced.
An excellent student would be able to link their answers to the 6 core values of the NHS, and the 4 pillars of ethics, such as autonomy and beneficence.
Model Interview Question and Answer on Max and Keira's Law
Explain Max and Keira’s Law and discuss how it relates to autonomy and consent.
Max and Keira's Law is the legislation for the opt-out organ donation system in England. It came into effect in 2020, and it presumes consent for organ donation unless individuals opt out, with exceptions for children under 18, individuals lacking mental capacity, and non-residents.
It was implemented in an attempt to increase the number of organs available for transplantation and address the growing transplant lists.
Autonomy involves the right to make informed decisions about one’s own body. Traditional organ donation systems require explicit consent, directly supporting autonomy. It is arguable that some patients may not be aware of their need to opt out if they wish not to donate their organs.
Therefore by assuming consent, there may be patients who end up being organ donors against their wishes, violating their autonomy.
To respect autonomy under Max and Keira’s Law, it’s crucial to have robust public awareness campaigns and accessible opt-out processes.
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Max and Keira's Law: Interview Questions For Medical School
What inspired the creation of Max and Keira's Law?
How does the opt-out system work in hospitals in the UK?
What are the potential benefits and drawbacks of this law?
How would you respond to a patient asking for a second opinion?
Do you think organ donation should be opt in or opt out?
Discuss the ethical implications of presumed consent in organ donation.
How does Max and Keira’s Law compare to the organ donation systems in other countries with high donation rates?
What role do specialist nurses play in the implementation of Max and Keira's Law, especially in cases where the individual's wishes are not known?
(Hard) Do you know how the introduction of Max and Keira's Law impacted organ donation rates in England since its implementation?
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FAQs about Max and Keira's Law and the Opt-Out Organ Donation System
What is Max and Keira's Law?
Max and Keira's Law, also known as the Organ Donation (Deemed Consent) Act, is a piece of new legislation which presumes consent for organ donation in England unless individuals explicitly opt-out.
How does the opt-out system work under Max and Keira's Law?
Under the opt-out system for organ donation, individuals are considered organ donors by default unless they register their decision to opt out of donation on the NHS Organ Donor Register.
Who are Keira Ball and Max Johnson?
Keira Ball was a nine-year-old girl whose donated organs saved four lives, including Max Johnson, a boy who received her heart. Their stories inspired the name of the law.
Why was Max and Keira's Law introduced?
The law was introduced to address the shortage of organ donors in England, with the aim of increasing the number of organs available for transplantation and reducing transplant waiting lists. and decreasing the number of deaths of people waiting for an organ.
Who is excluded from the presumed consent system?
The exclusions include children under 18, individuals who lack mental capacity, non-residents who have lived in England for less than 12 months, and those not living in England voluntarily.
How can someone opt out of organ donation under Max and Keira's Law?
Adults in England can opt-out by registering their decision on the NHS Organ Donor Register or using the NHS app to update their preferences.
What are the benefits of an opt-out organ donation system?
The benefits include a potential increase in organ donation rates, shorter waiting lists for transplants, and more lives saved through timely organ transplants.
What are the ethical concerns with presumed consent for organ donation?
Ethical concerns include respecting individual autonomy, ensuring informed consent, and addressing cultural and religious sensitivities regarding organ donation.
How is the public informed about their rights under the new law?
Public awareness campaigns and accessible opt-out processes are essential to inform individuals about their rights and how to register their decisions regarding organ donation.
What role do families play in the organ donation decision under the new law?
Families still hold ultimate decision-making rights and will be consulted by specialist nurses to discuss the deceased's wishes regarding organ donation.
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