Harvesting our organs:
 
the ethical perils of

'presumed consent'

 

Robin Downie

 

The Welsh Government has tabled a white paper concerning a 'presumed consent' system for the posthumous removal and use of organs and tissues for transplant. Consent is 'presumed' unless a register has been signed to 'opt-out'.
     The BMA and the National Institute for Clinical Excellence (NICE) are proposing similar systems, and the Scottish Government may follow suit. The grounds for these proposals are that there is a considerable shortage of organs for transplant, and while a majority of people support donation they have not got round to filling in the donor card. The new system is intended to supplement rather than replace donor cards by presuming consent for donation, but still requiring discussion with near relatives. These proposals raise a number of controversial issues.
     'Consent' is the central term of medical law and ethics. This was demonstrated in the inquiries of 1999-2001 which followed complaints at the Royal Liverpool Children's Hospital at Alder Hey. It was claimed that pathologists and others had been using organs for research without getting fully informed consent from relatives. Subsequent legislation in both England and Scotland now requires detailed information to be provided and understood if consent from either donor or relatives is to be valid. Obviously, such information has not been provided when consent from the donor has been presumed. If fully informed consent is required by law and ethics for the retrieval of an organ then it is immaterial whether the organ is then to be used for transplant or research. Logic requires consistency.
     It is also worth noting that even in its ordinary 'okay' sense consent cannot be presumed in the context of organ retrieval. In everyday life a presumption requires grounds: 'I presume you will collect the children today because it's your turn on Wednesdays'. But not signing a register is hardly a valid ground for any kind of presumption. There may be all sorts of reasons why a person hasn't signed a register, such as being scared of officialdom, or even not being aware that the register exists. 'Presumed consent' has no place in medical law for either donor or relatives and in the everyday sense there are no grounds for a 'presumption' in the case of organ retrieval.
     A second feature stressed in the Welsh white paper is that relatives must be involved in the decision-making process. Indeed, the white paper notes that in 2010-2011 'just over 67% of donors in the UK were not on the Organ Donors Register'. This raises a radical question. If relatives in the UK can already consent to organ retrieval in the absence of any known wishes of the deceased what is the point of introducing the spurious idea of 'presumed consent' of the donor? The whole project of 'presumed consent' seems totally unnecessary when an adequate framework for donation exists at the moment.

 

     This is where the views of NICE and the BMA become relevant. In order to increase the number of donations the NICE paper recommends that in discussions with relatives 'positive ways' should be used to describe organ donation. I have many problems with the manipulative language used throughout the NICE document but one point is jaw-dropping: relatives and 'donors' are to be told that donation is 'a usual part of end of life care'. In other words, end of life care means that 'usually' we are to die in an intensive care unit attached to a ventilator to preserve our organs until they are harvested.      This information – required by valid consent - will not appeal to everyone. Moreover, it is in total contradiction to another recommendation from the WHO supported by NICE. In 2004 the WHO stated that meeting people's preferences for place of care and death should be the 'ultimate measure of success' for a service, and NICE recommended the adoption of what is called the 'Gold Standards Framework', which stresses patient choice of place of death. But the evidence indicates that most people would choose to die at home, or in a hospice with friends around them. On the other hand, organ retrieval means death in the intensive care unit attached to a ventilator while the organ is retrieved.
     Many people profess willingness to donate organs, but this willingness is not reflected in the numbers signing the donors' register. No doubt there are many trivial reasons for this, but there is a widespread attitude which crosses geographical areas and historical periods that the body is not just disposable garbage or a commodity, or even just a source of spare parts for transplant. The human body must always be treated with respect. This can be seen in the outrage felt by parents over the retention of their children's organs after autopsy in the Royal Liverpool Children's Hospital; it can be seen in the desire for the repatriation of the bodies of soldiers killed in conflict.
     This vague but deeply felt attitude is universal and may partly explain the discrepancy between public professions of support for the donation of organs for transplant and the reluctance of many actually to sign up.
     In conclusion, I want to note a non-trivial point of language. If you carry a donor card or sign a register you are certainly to be praised as a donor, for you are voluntarily offering one or more of your organs for transplant for the benefit of others. But you are not a 'donor' if the state indicates it is going to harvest your organs whether you agree or not. Indeed, the attitude displayed by NICE may in fact discourage genuine donation. Altruism is a delicate flower and is easily discouraged.

 

Robin Downie is emeritus professor of moral philosophy at
Glasgow University