The donation hokey cokey: Is resolving to presumed consent the ethical cure for organ donation shortage?

By Laura Nicholson

Article Summary:

There has been a fluctuation of organ donation within the UK and there is an astonishing amount of people who are suffering and dying due to the lack of donations. But is ‘presumed’ consent the ethical way to increase the amount of donations, or is this taking away the individual’s right to choose what they wish to do with their bodies, when both living and dead? For many years people have known about the donor card and the publication of the organ donation organisation. The public are familiar with the work and achievements of such an organisation, for which has saved many lives. However, many could be unaware of how much could be donated whilst a person was alive along with the donations from those who have passed away.  The process of donations have only recently been publicised with television and newspaper advertisements, showing how vital and rewarding organ and blood donations are to those in need. However, if a sudden change to a well known process was restructured to the total opposite, this could give the impression of starting from square one again. A proposal has been put forward with the aim for a more proactive recruitment and educational process for consented organ donations, without the need to change the rules and ensue more distrust of the medical systems and the government. 

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On the 9th March 2009, the Metro Newspaper ran a story claiming fear was amongst the ethnic minorities to donate blood as they are scared they might be added to the national DNA database used by the police. Leading donation charities are strongly asserting the uses of donations to disperse any fears that this link is genuine. The trust in medical professionals seems to be misplaced and the element of conspiracy has brought fear into society and as a result the amounts of donations have decreased. Could there be instances which have evaded the need for consent, for which people are ignorant to? An example of this is has been reinforced by the Government scheme to publicise medical records on a NHS database without the consent and even knowledge of the patients. (Telegraph 10/03/10) The element of informed consent appears to be not as informed as one might think. For fear to emerge, an idea of mistrust has to be evident. Have there been instances of broken trust, invasions of privacy and an element of deception regarding ‘informed consent’, for which could instigate such fear?

What is informed consent and could this be flawed?

Informed consent is, as stated by the Royal College of Nursing (2006); as “an ongoing agreement by a person to receive treatment, undergo procedure or participate in research, after risks, benefits and alternatives have been adequately explained to them.”  My query is concerning the variable amount of information which is adequately explained to those who are donating organs, tissue, blood and other samples.  Recently, the Government has responded to a series of question regarding the use of consent by the UK Biobanks within legislation by The Human Tissue Authority and the HFEA.  Unsurprisingly, for research of eggs, sperm and embryos, full consent has been deemed essential by the Government for research to proceed. However, on the other hand when regarding blood and urine, and even tissue samples, it appears very vague to how much ‘informed consent’ is needed.  On Wednesday 28th October 2009, Lord Alton of Liverpool enquired in regards to the use of donated human tissue for hybrid research and how much information is provided for those donating to the UK Biobank. The response from Baroness Thornton clearly stated no samples will be used for this research now and in the near future. She also states if the goals of the organisation changes, further consent is needed. However, if the samples are held for a long period of time, will consent be able to be accessed? If not, what will happen to those samples?  

Yet, a worrying element could be seen within a vague statement given by Baroness Thornton concerning ‘informed consent’. She states, “They [donors] give their consent for analysis of their data and samples that will meet the goals of the UK Biobank to improve the health of future generations.” I am curious to know how in-depth the information is to be able to satisfactorily gain informed consent, concerning the goals of such an organisation both current and future.  This concern is also voiced by Philip Cheung (2007) as he uses the trial of drug TGN1412, in 2006 as an example. As language was used that wasn’t fully understood by the participants, therefore ‘informed consent’ was void. A questioning issue appears as Cheung states, at the time “the term ‘informed consent’ is not recognised by English Law,” therefore leaving the participants of such a flawed drugs trial without a legal leg to stand on as they consented to the trial. Informed or otherwise, consent was given by the participants. A flaw, I believe is shown greatly in this and reformation is needed as this I strongly believe is not the only instance information is not fully understood by those giving consent.

As there are evident issues with the process of gaining unquestionable consent by imparting sufficient information to the patient or relatives, some have sought a change of action plan to increase the amount of donations given by both the living and deceased.  Within the recent news, a Committee in Wales has been fighting using public debate, for the right to change organ donation into a requirement with an ‘opt-out’ option added. This has been brought before Parliament in Westminster. There are high amounts of deaths due to lack of organ donation. Transplants are needed every day and those who are suffering, wait hoping for the day transplants become available. Due to the rise and fall of donations being made from the living and diseased, an alternative way in which to increase the number of donations and, in turn lives that are saved, could be achieved by the ‘‘presumed’ consent theory. But how far will this theory take the patient away from autonomy?

The case in favour

There has been a fluctuation of organ donation within the UK and there is an astonishing amount of people who are suffering and dying due to the lack of donations. But is ‘presumed’ consent the ethical way to increase the amount of donations, or is this taking away the individual’s right to choose what they wish to do with their bodies, when both living and dead?  Something which might be unknown to the public is the amount of living and non heart beating donors, according to www.organdonation.co.uk, is at its highest in the last decade. However, the fluctuations appear within the heart- beating donors (in definition the donors are brain dead with vital organs still functioning.)
 

(Graph http://www.organdonation.nhs.uk/ukt/i/g/statistics/yearly09/full_size/don_type_10yr.gif : 18/03/10)

Something of interest is the amount of donations  over 10 years, even though there are fluctuations, there is a significantly higher amount of living donors than both heart beating and non heart beating donors.  ‘Presumed’ consent could be seen to have a highly positive effect to the amount of donations given in all areas. The British Medical Journal (BMJ) published research concerning the organ shortage and if ‘presumed’ consent is the way forward. From this research it would seem a higher amount of people were in favour of ‘presumed’ consent. Veronica English (2010) illustrates in the BMJ the reason people voted for ‘presumed’ consent, stating “People that could otherwise survive die because there are not enough organs. This alone is reason enough for presumed consent. We cannot let people die because of others' ignorance or superstitions.” However, it was clear the poll was not aimed at the general public (as the table shows below). In response to this I argue, how much is ignorance when polls and publications are aimed at a certain audience, segregating the general public giving rise to deficiency in education and ignorance.

 (Insert showing those who took part in the poll from the BMJ. http://resources.bmj.com/bmj/interactive/polls/presumed-consent)

It appears a reason of approval for such a proposed concept of consent, is due to the removal of distress and misery by making an emotionally and mentally demanding decision on behalf of a loved one. Michelle Hanson discusses in the Guardian (2008) the benefits on both ends of the removal of such a decision. She believes with ‘presumed’ consent, rash decisions by loved ones and further distress can be limited and as a result, the amount of donations will increase dramatically saving a great deal more lives. As shown in the chart above, the lowest amount of donations stem from the non-heart beating group, which could be seen to relate to the hard decision, that needs to be made within a time limit, made by a loved one in a time of loss. However, would ‘presumed’ consent invoke relief or further distress? Is it the decision at such a trying time that causes mixed feelings conflicting with the decision itself? Or could this choice be the hardest to make and either way, should not be forced?

The case against  

A huge ethical issue presents itself as the autonomy of the individuals would become void under ‘presumed’ consent, unless stated otherwise. The revolt against paternalism and the fight for greater autonomy has been a changing point within medical ethics for many years.  There are many who consider autonomy to be integral to medical care for the patient. This has an effect on the debate for ‘presumed’ consent, as the presumption of consent removed the choice and autonomy of the individual, irrelevant of their views of organ donation. To remove the element of choice and place it with government and medical professionals appears to be a backward step, bringing questions and mistrust to the public who feel their rights have been revoked.

In light of this, a terrifying state of affairs comes to mind. If such a law was to be allowed and a small amount of publicity was made of this new ‘presumed’ consent, I would guess the amount of donations would greatly increase due to the limited knowledge by the public. This is illustrated clearly in the previous polls which investigated how people feel about a u-turn of donor consent as we know it today. The majority of those who took part in the poll were medical professionals and staff, who would have greater access to such information and may have a biased opinion. The 6% members of the general public who took part in the BMJ poll are shadowed by the 54% of doctors and 13% of medical staff. This appears to have been a narrowly aimed public poll, for which the results are biased and unrealistic. A feeling of betrayal and dismissal of values by scientist and medical professionals could be felt by the public as their lack of knowledge has pushed aside their rights over their own bodies and that of their loved ones.

A huge issue with ‘presumed’ consent surrounds the choice of ‘opting out’ of donations.  Vivienne Parry (2008) illustrated within the Times, the fear that surround the proposal of ‘presumed’ consent and this fear is drenched in the distrust of medical professional’s principles. She depicts the distrust became strongly evident “after the scandals at Alder Hey and Bristol Children's Hospital. The Human Tissue Act was introduced to put consent at the centre of medical practice. ‘Presumed’ consent would go against its principles.” But a question is evident. If the theory of ‘presumed’ consent became a recognised law, how many people would be aware of the change from’ informed’ consent? Also, how many people would know of the ‘opt out’ option and the legal safe-guards that surround ‘presumed’ consent?

For many years people have known about the donor card and the publication of the organ donation organisation. The public are familiar with the work and achievements of such an organisation, for which has saved many lives. However, many could be unaware of how much could be donated whilst a person was alive along with the donations from those who have passed away.  The process of donations have only recently been publicised with television and newspaper advertisements, showing how vital and rewarding organ and blood donations are to those in need. However, if a sudden change to a well known process was restructured to the total opposite, this could give the impression of starting from square one again. The need for publication and public awareness of such changes will take a great deal of time and resources, as it would seem people even today still have yet to be fully knowledgeable concerning informed consent and organ donations. Have those involved in the publication and development of organ donations truly exhausted all options to gain further donors?

Proposal

I will aim to make a proposal to confront the issues at hand and aim to restore an amount of trust in the medical professionals and government, as well as increase the amount of donations for many years to come.  Recently a large amount of publicising has gone into making more people aware of the options of donating along with the benefits, together with graphic and thought provoking adverts of the affects on those needing donations. But I do not believe this is enough to reduce fear of misuse causing mistrust and increase the amount of donations. A wider audience needs to be accessed and the media may not be the way forward. Educating the younger generation along with the adults of today, could be a very proactive way in which to help this situation without resorting to ‘presumed’ consent. Secondary Schools should be taught how to educate the students about organ, blood and tissue donation for all uses along with the benefits and legal frameworks surrounding consent. Many young people today have strong opinions concerning many varied topics, even though the consent lies with the legal guardians until they are 18, they should still have the opportunity to form an educated opinion. Colleges and universities should be used as a tool to gain donors and as a podium to educate, which in turn will theoretically produce great results now and for many years to come. Another suggestion would be to approach, in person, large companies and industries with incentives to open the doors and educating a wider spread of people and gain further donors.  All together this may also reinstate trust back into the public, as greater transparency is being provided and the overall decision is with the individual.  In one sentence, a more proactive educational face to face approach, I propose, is needed to reach a wider audience which could reduce fear and produce higher results without having to turn to ‘presumed’ consent.

The choice should remain with the person involved and loved ones. Personal beliefs and values should not be pushed aside by such governing regulation. Perhaps with the above proposal, future generations and the loved ones of the deceased might feel differently concerning organ donation. ‘Presumed’ consent would open up a huge can of worms and the trust in the medical professional would take a huge hit if this came into play. In theory, whilst the legislation ,options and boundaries for the newly and meekly publicised ‘presumed’ consent were being tweaked over a period of time, many people who had died would have had organs removed and used for donations without their views or consent or the views and consent of loved ones being asked for.  As a positive, organ donations will increase, but to what cost and for how long?  It will take a long time for the ‘opt out’ option to be known widely however, it will circulate. Unfortunately there will be those who will not know and pay the price: the uneducated, the ignorant, the homeless and many more. On the surface, ‘presumed’ consent could be viewed as an easier option to increase numbers, but with devastating ethical effects.

In summary, I think we should opt out of the ‘opt -out’ option and opt for proactive education and informed choice.

Matters of interest:
•    http://news.bbc.co.uk/2/hi/uk_news/wales/7684291.stm
•    http://www.independent.co.uk/opinion/commentators/rupert-cornwell/rupert-cornwell-the-incredible-story-of-the-most-important-woman-in-the-history-of-modern-medicine-1891388.html
•    http://www.telegraph.co.uk/health/healthnews/7408379/Patients-medical-records-go-online-without-consent.html
•    http://www.guardian.co.uk/commentisfree/2008/jan/15/politics.uk
•    http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article5175519.ece

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