Hot potato, pass it round Consent in the context of Organ Donation and Transplantation Bobbie Farsides Professor of Clinical and Biomedical Ethics Brighton and Sussex Medical School
Why this topic? • Organ Donation Taskforce • Nuffield Council on Bioethics working group • NHSBT/BTS working group • NIHR funded research project Brighton and Sussex Medical School
A definition For medical intervention it is widely accepted that consent means a voluntary, un ‐ coerced decision made by a sufficiently competent or autonomous person on the basis of adequate information and deliberation, to accept rather than reject some proposed course of action that will affect him or her.’ Raanon Gillon Philosophical Medical Ethics , John Wiley and Sons 1985 Brighton and Sussex Medical School
The purpose of consent • To show respect for the person consenting • To establish a contractual relationship between the person consenting and the person/organisation requesting consent • To ensure the transfer of information • To share ownership and responsibility for the action consented to • To apportion control • To afford legitimacy and authority Brighton and Sussex Medical School
Consent as a process rather than an event • Setting out the issue • Providing information • Answering questions • Recording decision • Reconfirming decision Brighton and Sussex Medical School
Consider three occasions for consent • Consenting to become a live donor • Consenting to become a posthumous donor • Consenting to receive a donated organ Brighton and Sussex Medical School
Live donation • Issues of voluntariness and coercion • Structural issues e.g. gender discrimination • Provenance of donated organs • Removing limitations upon consent • Information provision in the context of live donation Brighton and Sussex Medical School
Theory and practice • Setting out the issue • Providing information • Answering questions • Recording decision • Reconfirming decision Brighton and Sussex Medical School
Recipient consent • Is consent to transplant different to other forms of consent to a medical procedure? • The risks associated with some organs will be higher, and in a situation of scarcity one might be offered an organ that could never be said to be the best organ for you. • What are the responsibilities of clinicians in terms of informing choice? • What is your right to ‘pick and choose’? Brighton and Sussex Medical School
Post mortem donation –joining the ODR • How do we present the issue? • What information do we provide? • Where does someone go with questions? • How do we record the decision? • Do we revisit the decision? Brighton and Sussex Medical School
Post mortem donation – family agreement • When do we set out the issue? • What information do we provide? • How do we balance the views of the family alongside those of the potential donor? In other words what is their role in the consent process? Brighton and Sussex Medical School
The consent of the doctor • The doctor is required to act in a patient’s best interest • If someone has consented to become a donor one could argue that procedures required to facilitate the process can be undertaken because they become part of what it means to respect the patient’s best interest. Brighton and Sussex Medical School
Concerns • If a doctor is sceptical regarding the extent to which joining the ODR accords to our ordinary understanding of consent, they might be cautious in terms of what they consider appropriate treatment on the basis of that consent • Conversely, faced with the opposition of a family who claim to be acting in the best interests of their loved one they might consider that there is a more recognisable consent process in train. Brighton and Sussex Medical School
Issue • When recruiting donors all considerations are currently made against a background of scarcity. • We persist in characterising prospective donation as a ‘gift’ and therefore feel comfortable excusing the process from the ordinary demands of consent • However, by doing so we undermine the status of donor consent , and so when it comes into conflict with the views of a family (who do not always use the language of gift) who are given the opportunity to engage with a more recognisable process one can see why the consent falls away. Brighton and Sussex Medical School
The problem of uncertainty • Drs find uncertainty challenging • Families are placed in a very difficult position at a tragic moment when they are unclear about their loved one’s wishes • More information must be desirable in this situation Brighton and Sussex Medical School
Proposal for the future – remove uncertainty • I wish to donate and I want my wishes to be respected irrespective of the objections of any family members or significant others • I have no strong wishes on donation and would like my family to decide • I wish to donate, but should my family object they should be allowed the right of veto Brighton and Sussex Medical School
Making consent a rich concept • On the understanding that donation will only become an option after my death, or once further medical treatment is deemed futile and my death is inevitable, I am happy for my donor status to be established when clinical factors suggest that my chances of recovery are slim Or I do not wish my donor status to be known until I have been shown to be brain stem dead or until it has been decided that life sustaining treatment will be withdrawn because it is no longer in my best interest. Brighton and Sussex Medical School
Perceptions of conflict • On the understanding that donation will only become an option after my death, or once further medical treatment is deemed futile and my death is inevitable, I am happy for my donor status to be established when clinical factors suggest that my chances of recovery are slim Or I do not wish my donor status to be known until I have been shown to be brain stem dead or until it has been decided that life sustaining treatment will be withdrawn because it is no longer in my best interest. I understand that this might Brighton and Sussex Medical School
Consent • On the basis of my understanding of what is entailed in becoming an organ donor I request that everything possible be done to ensure that I can successfully donate my organs. I have discussed this issue with those who might be approached for their agreement, if and when donation is discussed at the time of my death, and I request that they give due respect to my wish to donate. Brighton and Sussex Medical School
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