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St John's Essay Prize Winner: Solving the organ crisis? Impact of the government's new public consultation

June 12, 2018

Introduction

 

The government has recently issued a public consultation into whether presumed consent should be adopted for organ donation.[1] The existing policy regarding consent is an ‘opt-in’ model, in which posthumous organ donation may only be permitted if the patient had previously indicated that they wished to donate.  However, this policy has been criticised for being overly strict, and limiting the supply to an urgent demand for organ transplantation. Instead, the ‘opt-out’ model, which is already used in Wales, means that if it is unclear whether someone wished to donate, consent will be presumed. Presumed consent has led to concerns over the issue of autonomy, however, people are able to refuse posthumous donation.

 

Nonetheless, presumed consent is not a panacea, and such a broad-brush approach fails to address the nuanced problems that posthumous donation faces, including ethnic minority support and the education of the public.  In addition, it is not clear that by adopting presumed consent, it will satisfactorily solve the issues of limited organ supply.  Whilst this public consultation is certainly a good first step, it is by no means a final solution.

 

Origins of the ‘opt-in’ model and its problems

 

The current state of affairs emerged with the Human Tissue Act (HTA) 2004, in which “appropriate consent” is required for posthumous donation.[2]  This was as a consequence of the scandals in Alder Hey and Bristol Royal Infirmary whereby children’s organs were retained without parental consent.[3]

 

However, whilst appropriate consent has so far prevented the recurrence of such scandals, it has been criticised by academics, such as Harris, for exacerbating the current organ shortage crisis. He emphasised that the issue of posthumous organ donation was essentially a balancing exercise between the interests of the living and the interests of the dead.[4] Furthermore, Lord Mustill indicated in Bland that the dead do not have any appreciable ‘best interests’.[5]  Following this logic, such a strict ‘opt-in’ model is unnecessary, prioritising the so-called ‘right’ to autonomy of the deceased over the very real and pressing needs of living patients.

 

Nevertheless, this approach advocated by Harris is superficial and fails to account for a number of real concerns. Primarily, it is a nonsense to claim that the interests of the dead are negligible. Even patients who are in a persistent vegetative state are often cared for “in an environment where… [their] spiritual needs are administered to”,[6] even if they cannot appreciate this care. Likewise, the dead do not experience how their bodies are treated after death; there is no appreciable difference between these two scenarios.  Although our bodies do not legally belong to us, they hold significance to us.  We take guardianship over our bodies in life and even after death, our autonomy cannot be discarded. It is hard to argue that after death, although our will should be respected when concerning our tangible property, it should not be respected regarding our bodies.

 

In addition, the organ donation crisis stems also from a lack of resources and expertise.  Organ retrieval is both complex, requiring the coordination of various specialist teams, and infrequent, producing a lack of expertise amongst clinicians.[7] Even if organs were available, this would not necessarily improve transplantation rates.  Instead, to improve this, the necessary framework must exist to facilitate transplantation – a problem that cannot be fixed merely by discarding the ‘opt-in’ model.

 

Evaluation of presumed consent

 

An example of presumed consent would be the Welsh model, which was introduced in 2013, whereby if it is not clear whether someone wished to donate their organs posthumously, consent will be presumed.[8] As this policy was been adopted very recently, evidence on its impact on the organ donor crisis is limited, but initial indications are positive.[9]  Furthermore, whilst this is clearly a relaxation of the very strict consensual standards of the opt-in model, it does retain checks and balances. This is because the Welsh model can be classed as a ‘soft opt-out’ system as families can provide evidence as to the intention of the deceased.[10]

 

However, presumed consent fails to address the important reasons why some people refuse to donate. Minority ethnic groups tend to have lower donation rates which in turn reduce the supply from those groups. This can stem from a range of different factors, including mistrust of medical professionals and a lack of awareness.[11] The mere imposition of a presumed consent is unable to address these issues, and instead alternative solutions must be sought including potentially acknowledging or rewarding deceased donors.

 

Education must also be provided to the general public about the realities of organ donation. There is a concern amongst the public that if they were to consent, their own medical care could be compromised in order to harvest their organs instead. This is exacerbated through confusion regarding what the definition of what death actually is. Conventionally, it is believed that death occurs once the pulse has stopped. This is, however, at odds with the actual definition of brain-stem death. Indeed, a pulse may be required for the organ retrieval process, leading families to believe that clinicians would harvest their loved-ones’ organs whilst they were still alive. The fact that the government has issued a public consultation on presumed consent may help to educate by facilitating reasoned debate of these issues.

 

Conclusion

 

The introduction of the public consultation is undoubtedly a positive move, not only through a renewed debate on the consent policy for posthumous donation, but also through providing the public with the opportunity to voice their own views, and understand the views of others, on this contentious topic. Regarding presumed consent itself, initial indications show potential improvements in donor rates, however, there is still insufficient evidence. Furthermore, the government needs to consider the root causes of the low organ-donation rates, and thus introduce other measures, such as improved infrastructure and reward systems, to combat these directly.

 

 

 

 

 

 

 

 

 

[1] Department of Health, ‘Consultation on introducing ‘opt-out’ consent for organ and tissue donation in England’ (Gov.uk, 12 December 2017) www.gov.uk/government/consultations/introducing-opt-out-consent-for-organ-and-tissue-donation-in-england/consultation-on-introducing-opt-out-consent-for-organ-and-tissue-donation-in-england accessed 15 December 2017

 

[2] Human Tissue Act 2004 ss 2 and 3

 

[3] Michael Redfern, The Royal Liverpool Children’s Inquiry Report (HC 2001 12-II)

 

[4] John Harris, ‘Law and regulation of retained organs: the ethical issues’ (2002) 22 LS 527, 534

 

[5] Airedale NHS Trust v Bland [1993] 2 WLR 316 (HL) 897

 

[6] Ahsan v University Hospitals Leicester NHS Trust [2006] EWHC 2624 (QB), [2007] PIQR P19 [73]

 

[7] Organ Donation Taskforce, ‘Organs for Transplants’ (Department of Health, 2008)

 

[8] Human Transplantation (Wales) Act 2013

 

[9] Lee Shepherd, Ronan O’Carroll, Eamonn Ferguson, ‘An international comparison of deceased and living organ donation/transplant rates in opt-in and opt-out systems: a panel study’ (2014) 12 BMC Med 131, 140

 

[10] Organ Donation Taskforce, ‘The potential impact of an opt out system for organ donation in the UK’ (2008) p12

 

[11] Clive Callender, Patrice Miles, ‘Minority Organ Donation: The Power of an Educated Community’ (2011) 210 J Am Coll Surg 708

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