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Proposed Changes to Organ Donation Miss the Heart of the Issue

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About The Author

Abbey Brimson (Guest Contributor)

Abbey is a law graduate from the University at Warwick and a Future Trainee Solicitor at a major US law firm. She is currently undertaking the LPC at BPP Holborn. Her main interests are in company and finance law.

The measure of a life, after all, is not its duration, but its donation.

Corrie Ten Boom

It is undeniable that there is a need for a change in the approach to organ donation. The figures show that, despite the organ donation register boasting 25 million people, there were 6,500 patients in 2017 still waiting for a transplant. Meanwhile, in 2016, 457 people reportedly died because a compatible organ was not available in time. Something new is required to deliver an organ donation and transplantation system that operates effectively in order to save lives.

This is widely accepted across Parliament. In her Conservative party conference speech in October, Theresa May announced her ambition to change the NHS organ donation programme. More recently, a Private Members’ Bill put forward by Labour MP Geoffrey Robinson that would introduce an opt-out system for consent passed its second reading in February, with the government declaring its ‘whole-hearted support’ for it.

Clearly, this is an area set for change. In light of this, this article examines the current framework, the proposals and the variety of other avenues of reform open to lawmakers, arguing that the legislature and the law itself should not be able to impose a view upon an undecided population. The public instead should be encouraged to engage with the system as it stands.

The Current Law and the Proposals

The current law in England has its origins in two scandals that occurred at the turn of the millennium. In 1999 and 2000, parents discovered that Alder Hey Children’s Hospital and the Bristol Royal Infirmary Families had retained the body parts of their deceased children without their knowledge or consent. The doctors involved were portrayed as treating parents with contempt as they plundered their children for organs, and this dramatically turned the public against any form of tissue retention.

As a result, the Human Tissue Act 2004 (HTA 2004) was passed to place consent as the centrepiece of the law. Indeed, in order to protect the wishes of potential donors, Section 1 of the HTA 2004 holds that authorised activities – including the use of a body for transplantation under Paragraph 7, Schedule 1 to the HTA 2004 – are only lawful if they are done with ‘appropriate consent’. In this way, organs can only be used if explicit approval is given, either by signing the register or if the deceased had told a family member of their desire to donate. Consent is paramount.

The new proposed system, set out in Geoffrey Robinson MP’s Private Members’ Bill, has been described as a ‘soft’ opt-out system. This involves a presumption of consent, whereby the deceased is treated as having agreed to the donation unless they meet exemptions for children and adults without capacity. However, the family of the deceased would retain an important role: the removal of organs will never go ahead without their support. Indeed, instead of an opt-out register, it is the family that holds the key, as the presumption of consent will be overridden where:

[A] person who stood in a qualifying relationship to the person concerned immediately before death provides information that would lead a reasonable person to conclude that the person concerned would not have consented.

Analysing the Current Law

From a practical perspective, it is almost universally accepted that the current system is not doing enough to encourage organ donation. Meanwhile, from a theoretical perspective, criticism can be raised about how the current framework sacrifices to a great degree the control the public has over their bodies, as well as the way in which it allows the legislature to influence the public’s sense of morality. In this way, it can be argued that consent is not being adequately supported under the existing regime.

For example, questions can be raised about the suitability of a system that allows ‘appropriate consent’ to be acquired, despite competent adults dying without making a declaration or an advance directive. Section 27(4) of the HTA 2004 allows doctors to consult family members – spouses, children, parents and siblings – to ascertain whether tissue can still be obtained. If there is no next of kin available, Section 27(4)(h) of the HTA 2004 allows for a ‘friend of longstanding’ to make such a decision.

Though it is undeniable that family members and close friends are best-placed out of any person to uphold the deceased’s wishes, it is nonetheless clear that this opens the door for patient autonomy to be overlooked. Certain persons may be able to impose their beliefs and values upon others using the justification of fulfilling a perceived duty to increase the number of organs possible for donation. It is estimated that for one third of English families where a family member has already opted into the system, consent for organ donation is overridden by a relative.

Furthermore, information collected in 2004 by the BBC for its DoNation campaign discovered that 51% of those questioned had never discussed the topic with relatives. This suggests that over half of people who might be asked to provide ‘appropriate consent’ on behalf of the deceased are potentially guessing as to what the deceased wanted.

And, from a practical perspective, the effectiveness of the current system is hampered by the simple reality that doctors and medical staff are reluctant to discuss the issue of organ donation with the families of a relative who has just died for fear of causing offence, upset or merely seemingly callous. These concerns about insensitivity are heightened by the fact that cadaver donation must take place within a relatively small timeframe: certain organs such as the heart and lungs are only viable for transplant for up to four hours. 

Analysing the Other Avenues for Reform

The Proposals in the Private Members’ Bill

There is certainly elements of the proposals contained in the Private Members’ Bill to admire. For one thing, the ease with which a person can opt-out – particularly the lack of a register recording the names of such an individual – is laudable, while the motivations behind it are undoubtedly good. Furthermore, it has the support of the British Medical Association, Kidney Care UK, the British Heart Foundation and the British Lung Foundation.

However, a number of potent concerns can be raised that undermine the case for its approval. For example, from a practical point of view, there is early evidence from Wales – where an opt-out system was introduced in December 2015 – suggesting that it might do more harm than good. Indeed, following the Welsh change of law, figures show that in 2016 there was actually a small dip in the number of deceased donors, resulting in 27 fewer organ transplants than there had been in 2015.

Little wonder, then, that Hugh Whittall – the director of the Nuffield Council on Bioethics – has raised concerns about the speed with which the government is pursuing this reform. Speaking to The Guardian, he said:

The government should not be making this change until there is evidence that it works, and until we are confident that it won’t undermine people’s trust in the system in the long-term.

Furthermore, two of the practical impediments undermining the efficacy of the current law also seems unlikely to be resolved. Because the proposals do not remove the need for healthcare professionals to approach families to talk about organ donation, the issues in this respect are not alleviated. Indeed, under the new proposals, a transplant will not proceed if the family object since this objection is treated as information ‘that would lead a reasonable person to conclude that the person concerned would not have consented’.

From a theoretical point of view, there is one significant issue with presuming consent: it interferes with a person’s rights as a human and an individual. Though not quite as intrusive as removing the need for consent altogether, a presumption of consent still represents a failure to respect people’s differences as human beings: for example, many religions have established views on the body and the subsequent afterlife in addition to non-religious individuals who struggle with the idea of the ‘mutilation’ of a loved one. Thus, as Professor Margaret Brazier contends:

[F]amilies grieve differently just as they live their lives differently. Respect for family life requires respect for such differences.

It follows that presuming consent should be considered a violation of the need to respect a person’s religion, family life and (arguably) their right to freedom from inhumane treatment. The government is directly involving itself by imposing what it considers the moral and right thing to do onto those under its jurisdiction. This is dangerous in a diverse country in which a wide variety of religions are represented.

Mandatory Donation

Some have advocated the idea of mandatory donation of organs upon death. John Harris bases his support for the idea on the concept that consent is ‘inappropriate as a gatekeeper’ in this context; he therefore argues that making organs automatically available removes the need for doctors to ask for permission from the deceased and their relatives, thereby removing the moral objections in doing so. Instead of aiming to strike a balance between the wishes of deceased donors and the needs of those awaiting an organ transplant, he contends that upon death a person no longer exists, and their desires and self-control die with them.

This is undeniably the fastest and most comprehensive solution to the organ deficiency that the UK is currently experiencing. Yet it is an unrealistic and immoral approach to organ donation that overlooks the extent to which consent is a valued element of the British medical profession – indeed, some critics of the current medical profession suggest that consent is being presumed too readily as it stands, and to withdraw the need for consent entirely would be a clear step in the wrong direction.

Creating a Market for Organ Donation

Charles Erin and John Harris have suggested that a market for organs can be created ethically. They contend that it is hypocritical of those who attack the idea of a market to do so, on the grounds that the current system allows everyone involved to benefit other than the donor, such that:

[T]he unfortunate and heroic donor is supposed to put up with the insult of no reward, to add to the injury of the operation.

There are also significant financial benefits to having a market for organs. While the costs of maintaining a kidney via dialysis treatment totals around £23,177 a year, the one-off fee of £42,025 for a transplant followed by annual maintenance costs of £6,500 means that within three years, the transplant is more economically viable. Even with a further cost of purchasing the organ, the benefits to the struggling NHS system are clear.

Charles Erin and John Harris also argue that financial incentives to encourage donation would dramatically increase the number of organs available for transplantation and prevent exploitation of vulnerable parties since it would be highly regulated.

However, there are significant objections to the idea of a market for organ donations. For example, questions can be raised about whether the influence of financial incentives would mean that any consent given to organ donation would no longer be genuine: involving money risks manipulation, even if subconsciously so.

Furthermore, the commodification and the undermining of the value of a person’s body feels inherently objectionable. Notwithstanding the argument that it feels unethical to attach a price to parts of the body, it must not be overlooked that, in the eyes of many religions, the body is be sacred and worthy of the highest respect: to dismantle and distribute it would flaunt one of the central tenets of their faith.

Societal, Not Legislative Reform

The Nuffield Council considers the concept of altruism to be one of the most important elements of organ donation. It is argued that the harnessing of altruism and goodwill in society is the best way to counteract the current organ deficit. This would avoid the need for legislative change, for targeted and sustained campaigns to produce social change would ensure that the current framework – flawed as it arguably is – can be used to its full capacity.

Indeed, to some extent, the current campaign is already beginning to expand, focusing heavily on the younger generation with the comedian Russell Howard and reality TV star Jamie Laing extending their support in December 2015, and the latter launching a campaign through the popular dating app Tinder. This campaign should be expected to be successful, for there is clear evidence that there is potential for the current system to be more effective. After all, the data collected by the BBC’s DoNation campaign in 2004 showed that at least 90% of those surveyed would want to give their organs upon death, but had simply failed to register.

Furthermore, by integrating organ donation into the common elements of life, the controversial nature of the issue might be reduced – or indeed, eliminated – in a way that produces a society made up of people more prepared to donate their organs to save another’s life. Increased awareness for the organ donation campaign would mean that doctors could use Section 27(4) of the HTA 2004 to its fullest potential, as approaching prepared and expectant families on death becomes a more common procedure.

Indeed, it is widely documented that raising public awareness, encouraging family discussion, and better support and communication between specialist nurses and bereaved families is paramount to an effective organ donation system. As Hugh Whittall told The Guardian:

Even in systems where an opt-out approach has been adopted (such as Spain), it is generally recognised that these are the elements that have made a difference, rather than the legal basis of the donation.

Conclusion

It is beyond argument that the current system of protecting the donor’s consent is not as effective as it could be. Something is needed to change in a system that has seen England record some of the lowest rates of consent for organ donation in Western Europe.

Nonetheless, it is contended that this change should not be in the form of legal reform. At present, it is clear that the apathy towards, and lack of awareness of, the current system is holding it back. Furthermore, the issues concerning the extent to which the current system upholds the wishes of the deceased and bypasses consent must not be overlooked.

It follows that to remove this element entirely through the proposed opt-out system – or via mandatory donation – would be counter-productive; after all, the problems with interaction with consent in the current system means that it seems unrealistic to impose a reform that undermines personal autonomy to an even greater degree. Ultimately, while a change in attitude towards organ donation is not going to be a rapid one, it seems clear that it is the most ethically sound and (as evidence suggests) effective solution in the long-term.

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Tagged: Human Rights, Medical Law & Ethics

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