Re: Donor identification and consent for deceased organ donation: summary of NICE guidance
The NICE guidance on organ donation summarises the process for seeking consent and highlights the need to improve conversion rates and consent. Families have difficulty accepting both the concept of donation & transplantation and the sacrifice that they themselves have to make in facilitating the process. In law, doctors may take organs from patients after death, if the patient has so decreed during his/her life, as shown by registration on the organ donor register (ODR), carrying a signed donor card or following pre-emptive discussion with family members.
In the real world, despite the wishes of patients and documentation and evidence to support this, the reluctance of the family to agree to donation carries an effective veto. This is because those of us caring for dying patients and the transplantation service tread carefully to ensure we only proceed with agreement and consensus and not in the face of opposition and resentment - thus acquiescing to the veto. The opting out system proposed by one school, whereby organs are taken unless the person has decreed otherwise, smacks of big brother's ultimate tax - taxing the dying and taking their organs to boot.
The obvious method of upgrading registration on the ODR to a consent form is flawed for practical reasons. A signed and witnessed document outlining the donors' intention to donate would carry significant legal weight but it would necessitate a proper consent process. Consent requires adequate information, capacity and time to understand, consider, weigh and reproduce the options and the ability to make and communicate a decision. This is not a process that occurs when ticking a box on the ODR or driving licence application. It is inadequate for consent and hence not a valid "consent form" for the surgical removal of organs at the end of a person's life.
Families often fail to appreciate the paradox of their acceptance of the person's legal will (and any benefits that this might involve) and their reluctance to accept the person's wishes to allow donation to occur. So a useful way to circumvent such reluctance is to enshrine our wishes in our wills. We could make the existence of a will known to our family and friends, specifically writing our wish to have our organs and tissues made available to humanity and the health service in the event of our death. Organ donor cards and the ODR could be changed to specifically state that this is a wish which is signed and witnessed in our wills. An electronic copy could even be stored by the ODR for verification (and such storage accepted and agreed within the will itself). This process would downgrade the effective family veto - how could a family morally or legally deny the wish to donate, written in the will but accept the benefits contained within the will? Indeed a potential donor could include a penalty clause in the will for failure to accept organ donation wishes. This simple manoeuvre might allow all to accept the wishes, will and altruism of our generous citizens and ingrain a practical incentive to families to comply.