In England, the Department of Health (DH) is currently consulting on the topic of an ‘opt-out’ system of consent for organ donation. The consultation closes on 6th March 2018.
The current rules mean that consent is required for a person to be considered an organ donor. This ‘opt-in’ system usually means knowing whether a deceased person has signed the NHS organ donor register, or having a discussion with close family. While this system has seen a significant increase over 10 years in organ donations (75%), transplants (56%) and there are currently 24 million people on the NHS Organ Donor Register, there is still a significant shortage of donors in England. Currently, there are 6,500 people waiting for a transplant, and three people die each day due to a lack of suitable organs. This shortage is also felt more significantly by people from Black and Asian backgrounds who are harder to find matched donors for.
An ‘opt-out’ organ donor system will require a law change to assume that all people are considered willing to be an organ donor unless they decide to opt-out. The proposal is anticipated to significantly increase the number of organ donations.
In Spain, the current ’opt-out‘ donor system has made organ donation be routinely considered when a patient dies, regardless of the circumstances of death, and has considerably increased the number of procedures. Indeed, Spain has been the world leader in organ donation for the past 25 years. Spain saw 43.4 individual donors per million people (pmp) in 2016, an increase from 39.7 pmp in 2015 and 36 pmp in 2014. This is much higher than the EU average (19.6) and the US average (26.6) according to stats published by the Spanish Ministry of Health. However, Spanish doctors are required by law to ask relatives about the will of the deceased regarding the donation. In practice, the decision of the family is always respected, since it is assumed that it would not contradict the wishes of the deceased loved one. The signature of the family to proceed with the organ donation is what formally triggers the whole donation process in Spain.
When evaluating any public policy, it is important to consider the behavioural concept behind it. Nudge theory is a school of research spanning economics, psychology and policy, that looks to encourage people to make decisions that are in their broad self-interest. Within health, it is concerned with encouraging certain positive behaviours, rather than penalising negative behaviours. For example, promoting shops to place healthy snacks at the checkout, rather than a tax or ban on sugary snacks. Nudge theory has been influential in governmental policy across many countries in the last 10 to 20 years. The field has also been of interest in both popular culture and academia; economist Richard Thaler wrote a bestseller in 2008; “Nudge: Improving Decisions about Health, Wealth and Happiness” and was awarded the Nobel prize for economics in 2017, in part for his contribution to nudge theory.
So in the case with organ donation, it is understandable that nudge theory is a relevant tool to help solve the organ shortage problem. It frames the solution as looking to make it easier for people to be an organ donor by assuming that they would want to be, a view backed up by research suggesting that 80% of people say they would want to donate their organs and tissue after their death.
At DRG Abacus, Laura Mathers worked previously as an Intensive Care nurse, and is now an Associate Analyst in our Clinical Outcomes Assessment and Systematic Review team. She adds that from a clinical perspective:
“Many relatives have stated that their loved ones would have wanted to donate but simply never completed a donor card or online form. Relatives receive a letter informing them of who has received what organs with basic details of the recipient. This can be very comforting for relatives who have supported their relative’s wishes or made the decision to donate their organs.”
However, at what point does a nudge become a shove, and is there a risk of nudge policies infringing people’s rights? Also, are nudge policies the most effective way of achieving a desired outcome?
There are a number of faiths that do not support organ donation or related medical interventions, and any law must not impinge on their protected characteristics. Language could potentially be a barrier; there are times when patients have no family in the country, or their family and friends speak very little English, although translators are available to assist relatives with these difficult conversations and decisions. Moreover, not everyone may want to be an organ donor. Relatives may not agree with organ donation, and patients who are donors after brain death – which accounted for 680 donors in 2016/2017 – face a particularly tough decision. Patients are lying in a hospital bed, breathing, their heart beating and warm to touch – but only with the assistance of mechanical ventilation and drugs. This can be very difficult for relatives to come to term with.
If people feel that the government or health system is not respecting their rights, then does that erode confidence in the system as a whole? Importantly, the current system is not flawless in considering the rights of someone who is deceased, because even if they have signed the NHS Organ Donor Register, their family can overrule this decision and the donation will not be conducted. The consultation specifically asks questions that cover race, faith, familial consent, and safeguarding. The consultation is also interested in financial information for the DH to better understand the financial implications of being on a waiting list. This will enable the DH to help quantify the economic impact of the new system and to ensure that it is an appropriate use of health resources. This is important because the organ donation system is not simple, and many transplantations cannot occur due to logistical difficulties in ensuring the organ can be identified as quickly as possible and the transplantation prepared. Checking donor registers and talking to a patient’s next of kin can take days. If family do agree to organ donation, numerous tests must be performed to check which organs are viable, and then find suitable recipients for the relevant organs across the UK. Specialist nurse organ donations (SN-ODs) work 24-hour on-call shifts to complete this process. Once organs are retrieved there are multiple ambulances and helicopters waiting to transport these organs across the country. An opt-out system may improve transplantation rates due to earlier identification of potential donors enabling more time to plan, irrespective of whether it increases the number of donors available.
At DRG Abacus, we are interested in the big issues facing our health systems. We are a team of experienced health economists, consultants, psychologists and health researchers with backgrounds spanning clinical practice, policy, industry and academia. Our market access colleagues in DRG provide market expertise from around the globe. Our skills and experiences mean we can think about the “what, why and how” of the challenges facing global health systems and support our clients in navigating these. To connect with us, email Access@TeamDRG.com