Organ and tissue donation are modern medicine's success stories, helping to save and improve the lives of many people. Yet, with more than 6000 people on the UK transplant waiting list for a solid organ (heart, lungs, liver, kidneys and pancreas etc) (NHS Blood and Transplant (NHSBT), 2019) (Figure 1) and around 400 people dying every year while waiting for an organ, England has decided to join other countries worldwide in the implementation of a law change regarding organ and tissue donation.
The current situation
Nearly 25 million people have signed the Organ Donation Register (Jones et al, 2019) to declare that they have decided to be an organ and/or tissue donor in the event of their death. However, there are not enough organs to meet the demand required for transplant (Figure 1). Solid organ donation can only happen in a small number of cases. Only 1 in 100 people dies in circumstances where their organs can be donated (NHSBT, 2020). Organ donation occurs mainly in circumstances of sudden and unexpected death from individuals receiving care on an intensive care unit or in an emergency department. Some people who have previously recorded a decision on the Organ Donation Register indicating that they wish to donate have their decision overruled by family members who are unsure of what their loved one would want or find it difficult to contemplate donation at the time of the death.
There is generally great public support for organ and tissue donation but sometimes the family are left trying to guess what the individual would have wanted if there is no recorded or stated decision around donation.
Over the past few years efforts have been made to increase organ and tissue donation rates across the UK (NHSBT, 2013: 6) by assessing and addressing every element of the organ and tissue donation pathway from relationship building with hospital staff, initial identification of potential donors and referral to a specialist nurse–organ donation or a specialist requester nurse, to improved donor management and organ utilisation. Despite impressive improvements, there is one outcome that has remained resistant to change—the proportion of families who give their consent or authorisation for organ and tissue donation to occur.
New legislation in England
From spring 2020 the law in England will be changing. This new legislation, called the Organ Donation (Deemed Consent)
Act 2019, also referred to as the ‘opt-out’ system, means that all adults in England will be considered to have agreed to be an organ and tissue donor when they die unless they recorded a decision not to donate or are in an excluded group (see below). Because families do not always know what decision the patient would have made, this change in legislation is intended to offer more choice. Families will still be required to consent to the donation, but they can feel more confident that if a patient did not want to become a donor then they would have expressed this decision by opting out. It is hoped the new law will enable those who decide to be a donor to have their decision upheld to save and improve the lives of others.
It is common for laws to be named after campaigners in recognition of their efforts to bring important issues to public attention. This change in legislation will also be known as ‘Max and Keira's law’ after 13-year-old Keira, whose heart was donated to Max following her tragic death in a car accident (Department of Health and Social Care, 2019).
The law will not apply to:
Other UK countries and territories
Wales has seen significant improvements in public support for organ donation since its move to an opt-out system in December 2015. For the first time, Wales now has the highest consent rate of all the UK nations, standing at 77% in 2019, up from 58% in 2015 (NHSBT, 2019).
Jersey implemented its change in legislation in July 2019 and the Isle of Man, Scotland and Guernsey will be moving to an opt-out system in the next year or so.
Public awareness
From April 2019 a year-long national public awareness campaign was launched called ‘Pass it on’, to increase awareness and understanding of this new legislation. The aim is for 97% of the population in England to have seen or heard about the law change on 17 occasions. The awareness campaign will increase in intensity before the implementation date. For further information and to register a decision visit www.organdonation.nhs.uk or call 0300 123 23 23.
Organ and tissue donation remain an altruistic gift. Individuals still have the right to choose whether to be an organ and/or tissue donor, and families are always involved before donation takes place.
NHSBT specialist nurses–organ donation and specialist requesters have been working with donating hospitals throughout the UK to ensure that for every patient identified as a potential donor their families can support decisions on the Organ Donor Register or be able to make an informed decision for the patient to become an organ or tissue donor through sensitive conversation.
Specialist nurse training and skills
Specialist nurses–organ donation and specialist requesters working for NHSBT are trained to collaborate with intensive care and emergency department colleagues to discuss organ donation in appropriate situations. This means that all potential organ donors are identified and, where appropriate, a discussion with the potential donor's family will take place.
NHSBT nurses working in organ and tissue donation participate in advanced communication training and are compassionate experts in discussing donation sensitively, considering cultural, faith and religious beliefs held by patients and their families. They undergo an intensive training programme, discussed in a previous article (Scales and Bentley, 2020), and a new legislation-specific training programme has been developed.
Once a decision to donate is reached these specialist nurses undertake the complex process of gaining information about the donor to enable successful, safe donation and subsequent transplantation.
Conclusion
Changes in organ donation legislation are occurring across the UK, and we aim to raise the profile of donation and for the discussions with families to become a usual part of end-of-life care. We strive to uphold the decisions of the deceased and support families through the process with sensitivity and professionalism.
We want to be an employer of choice and attract the best nurses to deliver world-class care. Our specialists cover over 350 hospitals throughout the UK and are constantly striving to achieve the best outcomes for their donors and families. The benefits of organ and tissue donation are far reaching: a comfort for grieving families and a life-saving transplant for recipients and their families.