Should the UK change from a “required request” organ donation system to a “presumed consent” system?
Andrew Michael Armson
Candidate numbers: 9021
Word count (Essay only) – 5,010 words
Table of Contents
Chapter 1 - Introduction and overview3
Chapter 2 – Methodology4
Chapter 3 – The forms of consent5
Chapter 4 – Required Consent6
Chapter 5 – Reasons for change/ Problems7
Chapter 6 – Presumed consent9
Chapter 7 – Exploring the Ethics10
Chapter 8 – “Time for change?” - Analysis11
Chapter 9 – Evaluation 13
Appendix/Glossary14
Bibliography16
Chapter 1 – Introduction and overview
The issue of organ donation has hit the headlines frequently for many years now. The question of whether the UK should diversify to the “presumed consent” system - which other countries have implemented - has been subject to heated debate.
So firstly what is organ donation? Organ donationis the removal of specific tissues of the human body from a person who has recently died, or from a living donor, for the purpose oftransplantingthem into other persons. This is not to be confused with the term organ transplantation, which is the act of moving the organs or tissues from a donor to the recipient. My title states that I will only be looking at whether the UK should change its system. The UK or United Kingdom refers to the collection of countries including: England, Scotland, Wales and Northern Ireland. It is these definitions that I will refer to throughout.
[1]What can be donated? The term “organ donation” can be misleading as it is not only organs which can be donated but also tissues of the body. Organs however are more commonly donated. Commonly donated organs include: kidney, heart, lung, liver, pancreas and small intestine. Commonly donated tissues include: cornea, bone, tendon, skin and heart valves. Most patients who die in a hospital or hospice environment can be candidates for organ donation. Certain conditions must be satisfied. For a person can be considered for organ donation, under the current system, they must be clinically announced are brain stem dead*. They must have also expressed an interest in becoming a donor, ie on the organ donor register. If these are satisfied then the following procedure will take place:
1)Consultant approaches family (no suggestion of organ donation to remain sensitive)
2)Consultant will alert a specialist nurse for organ donation who assesses the case and the suitability of the patient for organ donation.
3)Patients is examined confirming brain stem death
4)Discussion with family of possibility of organ donation
*Although current system says that if patients and person in highest qualifying relationship says ok then the donation would proceed, in practice if there is an objection lower down the list then organ donation would not go ahead. (Explored further in chapter 4)
5)Search for match
6)Retrieval of organs (incisions are closed and body available for family viewing)
(Student British Medical Journal Online, 2010)
Chapter 2- Methodology
I limited my title to just looking at the UK for many reasons. The majority of accessible information that was available to me was regarding the UK. I also wanted to pay particular attention to the NHS. The UK is also the country where I live and so I have a genuine interest in the area and how it could impact me and society as a whole.
The request systems that look at are both concerning cadarvic organ donation* and so the majority of the content of my project will be using this unless stated otherwise.
To gain depth of information on the subject I looked at extensive secondary research and even conducted my own primary research.
I chose to produce a survey which had closed questions which an open box at the end for any free comments. The closed format would enable easy data collection and also enables the information gained to be specific and what I wanted it to be. I distributed the survey online and in person. I chose to use the website survey pirate (accessible from so that a varied sample could be gained. I used the paper copied also, so that I could target people who I specifically wanted to ask; this may seem bias but I was targeting important people who would not be likely to complete the online questionnaire, ie health care professionals. Admittedly, the 30 people survey is a very small sample and so my results from this cannot be entirely valid, however they can give a broad yet uncertain projection. Details of the survey are given in the appendix. Within the survey I included small paragraphs of context, for example what opt in consent is, so that they were sufficiently informed to answer the questions. I also paid close attention to the wording of the questions. I kept each question simple and to the point, omitting any emotive language that could invoke bias in the results. I distributed a small amount of surveys in college, to gain younger persons perspectives; a small number in an adult work place; and the rest were posted on the internet, hence were completely random. I then collated the whole of the data together and dealt with the numbers.
The results from my research are represented graphically and are as follows:
[2]Official studies such as published by uktransplant.org.uk in 2008, show a similar trend. The statistics showed that even though 90% of the population was in support of organ donation only 23% where registered organ donors. (NHS, organ donation) This is congruent with my results which show that 100% would be willing to accept organs if their life depended on it – hence support organ transplantation in some way – only 39% re-enforced this by actually becoming an organ donor.
The parallel results between mine and one of a larger sample, adds reliability to my primary research. It implies that although the sample size is smaller it represents the views and statistics of the nation well.
Chapter 3– The forms of consent
There is not a rigid system of either presumed consent of required consent; there are different forms and variants which different countries adopt.[3]
1)Hard presumed consent system – This is where organs can be removed from any deceased body unless the person has registered to opt out. There is no family veto*, the only way to not donate is to opt out. This system is used in Austria
2)Soft presumed consent – This takes two forms:
(a)Organs can be removed from any deceased body unless the person has registered to opt out or relatives veto* against taking organs. However it is up to the relatives to veto* the decision, the doctors with not ask them. This system is used in Belgium
(b)Organs can be removed from any deceased body unless the person has opted out. Doctors will ask relatives for their agreement to the wishes at the time of death.
3)Soft required consent – This is where organs can be removed if the person has opted in. Doctors can veto* decision if relatives oppose. (for more information see chapter 2) This is the current system in the UK.
4)Hard required consent - This is where organs can be removed if the person has opted in. Relatives are not in a position to veto* the person’s decision.
(Taskforce, 2008)
Chapter 4 – Required Consent
The “required request” organ donation system is more colloquially known as the “opt-in system.” It is the system of choice for the UK at this present time.
The Tissue Act of 2004 – with respect to organ donation
The laws surrounding the system are set from the Human Tissue Act of 2004 which covers the whole of the UK excluding Scotland and the Human Tissue act of 2006 which covers Scotland.
[4]The act proceeded: HumanTissueAct1961; AnatomyAct1984; Corneal Tissue Act 1986;HumanOrgan TransplantsAct1989.
It covers the removal, use and storage of ‘relevant material’ [which is defined as ‘material other than gametes*, which consists of or includes human cells.’ Using this we can deduce that embryo’s outside the body, hair and nail from the body of a living person is not included as ‘relevant material’] from deceased bodies and human organs for transplant. It states that it is an offence to interfere with a person’s body without consent andmakes it illegal to use humanmaterial once donated for purposes other than those set out in theact.
It clearly states that a lawful use of human organs or material is for that of transplantation after requiring appropriate consent. The boundaries of appropriate consent are set out:
a)Adults
i)Living adults: appropriate consent comes from him/her
ii)Deceased adults: Decision of consent or decision of no consent immediately before death
:If no decision then a representative can consent
:If no representative then somebody in a qualifying relationship* can consent.
b)Children
i)Living children: appropriate consent can come from the child if competent.
: Consent can come from the parents if the child is incompetent of making a decision or simply cannot.
ii)Deceased children: the parent or somebody in a qualifying position* can make a decision on behalf of the child if the child has not made a decision.
((HTA), Human Tissue Authority, 2006)
This implies that if the donor has given consent while alive and competent (ie through an organ donation card) then valid consent to donate organs has been given. Once consent is established, relatives are encouraged to respect the deceased’s wishes and are advised that they have no legal right to veto* their decision.
However, if no record of the deceased’s wishes are present the medical staff will ask relatives if they know of any wishes the deceased had expressed or if the deceased had nominated a person to deal with the use of their body; consent may be given by this person.
If neither of the above apply then consent for donation may be given my somebody in a ‘qualifying relationship*’
This is how the current system works, but is it best for our future and what are the problems that are causing such a debate to arise about whether the system should be altered.
Chapter 5 – Reasons for change/ Problems
[5]“Every year hundreds of people die while waiting for an organ transplant and many others lose their lives before they even get on to the transplant list.” (NHSBT, 2011); A direct quote from the NHS blood and transplant website that describes a key issue. Simply people have died that otherwise could have been saved if there were more donated organs and tissues available. [6]Furthermore the quote “Three people who need an organ die every day” adds an even more quantifiable validity to the situation. (Organ donation advertisment, 2009)
[7]The dire situation is illustrated by the fact that the government has started to advertise organ donation. In November 2009 the biggest step in an effort to increase organ donation numbers was broadcasting an emotive television, advertisement. The video shows the rapid deterioration of a teenage boy, who presumably requires an organ transplant. At the end of the advertisement the boy closes his eyes almost as if to signify his death, followed by an information of how to sign up to the organ donation register. The video is highly emotive and is used to show the extreme of what is happening and highlights the key issue that people who require an organ translate are dying due to low numbers of organs available. (Organ donation advertisment, 2009)
My research showed that although everybody I questioned (100%) said that they would be willing to accept organs if their life depended on it – hence support organ transplantation in some way – only 39% re-enforced this by actually becoming an organ donor. In addition of the 69% of non-donors 82% answered “possibly” when asked would you like to be a door in the future.
Figure 1 and 2, (below) show are graphical representation of this from my questionnaire.
Figure 3 Figure 4
This research suggests that there are peoplewho may want to donate but aren’t donors. The reason could lie within the nature of the system itself.
A common theory of why this is the case is because of people’s tendencies to put-off things that aren’t their main priority. Under the current system this means that people who do potentially want to donate, either don’t register or don’t talk about their wishes because isn’t of priority in their lives. The proposed presumed consent scheme could solve this common problem by defaulting to opting in if they don’t register either way. However the minority, who don’t intend to donate, could potentially never get round to registering to opt out either: hence forcing people who don’t want to be donors to be donors. This could be seen as more prolific or wrong than the current problem. But does the proposed scheme solve all or most of the problems?
Other theories include the fact that it can be difficult to talk about death let alone talking about how you want your body to be used after death. The family of elderly people who have not opted in and who have not discussed this with the deceased may find it most comforting to default to not donating their relative’s organs. Also young people may not take the concept of death too seriously and so put off any attempts to gain a donor card even if in the future they intend to donate organs.
Figure 5 shows the relative proportion potential donors compared to people who actually donated after the family has been approached. The data is split into regions.
There is a relatively low success rate of potential donors to actual donors. This highlights a key issue that although a person expresses a wish to donate the family may not express the same wish. Under the current soft system they have the right to do this.
This could be combated by the introduction of a hard system but then brings arise to ethical issues.
Chapter 6 – Presumed consent
Soft presumed consent system – more colloquially known as the soft opt out scheme – is the most likely system to be implemented in the UK if changes were to be made. Although hard systems can be quicker to deal with individual cases they can be colder and have come key flaws. With the opt-in system: people who had joined the register in the past may have changed their preference but had not yet made the decision official. Similarly, with and opt out scheme people may not have registered their desire to opt out although this is their wish. In these instances relatives could step in and explain the situation: this vital information would only be taken into account within a soft system.
The current system is based upon the Human Tissue Act of 2004, this contradicts the basis of presumed consent and so the legislation would need to be revised to account for this.
A fundamental argument for introducing such a system is to increase organ donor numbers. Although there may be a positive correlation between presumed consent and numbers, the donor system may not be the only contributing factor: if even the main one.
[8]Spain leads the way in proportion of donors per population with 34 people per million of population (2008). The country has had a presumed consent organ system since 1979. (International donor statistics)[9]Some assume that it is the presumed consent system that is solely accountable for its donor success: however it was not until 1999 when the infrastructure was improved that the organ donor numbers increased. (Trueland, 2010)
However Sweden shows a different trend. [10]Sweden has one of the lowest rates for organ donation in Europe with 10 people per million populations (2006). The country has had a presumed consent system since 1996 and has not seen a great increase. (Wolfbrandt, 2006)
Analysing the information from the two case studies, although introducing the presumed consent system increased organ donation rates in Spain this was not until well after it was introduced and in Sweden only by a little. This could suggest that it was secondary factors which have increased donor numbers in Spain, such as the mentioned improved infrastructure. Sweden may already have a good infrastructure and advertising strand in place. Consequently there it is still unclear on how the system change may affect organ donor rates in the UK based of these examples.
From my primary research 57% of people looked at the prospect of introducing the presumed consent “positively”. Other official surveys conclude that between 41-60% are in favour of presumed consent. However are people really informed about what the draw backs of the current system are and even if the proposed system would solve any of them? They may just assume that because people become “defaulted” to donating, then numbers must rise; have they thought about what they would do, especially if they are not donors presently, and if they have expressed some interest in becoming a donor, what has stopped them in the past and will there still be enough nervousness to make them opt out? Are there ethical issues which are stunting their eagerness to donation?