Abstract
Department of Health is consulting on opt-in or opt-out for organ donation for transplantation. Merits and demerits. Cooperation between doctors and the family is essential.
Organ donation and transplantation is a useful and desirable practice, saving many lives. Nearly 4000 such procedures are carried out every year. However, there are over 6000 patients on the waiting list at any given time. There is a serious shortage of available organs. An estimated 1000 patients a year, i.e. on average three every day, die for want of a transplantation. An estimated 1000 families a year refuse to give consent to organ donation. At present, English law is based on the principle of consent: the consent of the deceased and the consent of the family are required. No consent, no organ donation. Under the opt-in system the donor in his lifetime has to register his consent on the NHS Organ Donor Register. Although if asked some 90% of the population say that they favour organ donation, in practice only some 60% actually register. The general public is encouraged to register in that registration can be done through the application to the Driver and Vehicle Licensing Agency (DVLA) for a new or renewal driving licence. Suggestions have been made that dentists and opticians and similar professionals could be encouraged to promote registration by their patients.
The Department of Health is currently consulting the public on a possible change in the law from opt-in to opt-out, i.e. to a presumption of consent unless and until during his lifetime the deceased registered the withdrawal of his presumed consent. The opt-out system has been adopted by law in Wales. It is still too early to assess the impact of this change but the expectation is that there will be some gradual increase in the number of organ donations.
Even if the deceased did register his consent to organ donation, so that legally and technically the doctors can go ahead, in practice the family is consulted, and if the family refuse consent then organ donation does not go ahead. The death may have come suddenly and unexpectedly upon the family. The bereaved family may well be distressed. The family may have genuine religious or moral or ethical or cultural objections. The family may not understand the significance and implications of the procedure. The idea of interfering with the integrity of the body may cause psychiatric and psychological harm, and the deceased is unlikely to have wished to cause his family distress because of any organ donation.
The consent and co-operation of the family is important to the doctors because they may well find that information regarding the medical history of the deceased, his drugs, his lifestyle, his travel, to be particularly useful in the organ donation and transportation process. Good medical practice indicates that wherever possible before the death the consultant and his team should discuss the possibility of organ donation with the family so as to prepare the family for the death and an organ donation, and so as to gain the confidence and co-operation of the family so that the whole process may indeed take place, with consent and with appropriate expedition.
There is no property in the body. For religious, moral, ethical, cultural and social reasons the dead body cannot be treated as property, a deteriorating chattel. Society expects and requires respect and dignity to be accorded to the body of the deceased.
For purposes of transplantation, and other matters such as anatomical examination and determining the cause of death and the medical efficacy of any treatment administered and obtaining medical and scientific information about the deceased, the consent of the Human Tissue Authority (HTA) is required, usually given by licence Human Tissue Act 2004 ss 1 and 13–15 and schedule 1 para 7, and the Guiding Principles and the Fundamental Principle of Consent 2017, the Code. The HTA is the Regulator. The NHS Blood and Transplant Authority is responsible for the transplantation arrangements, under the HTA.
Guiding principles and the fundamental principle of consent HTA 2017
Para 21. The existence of consent permits an activity to proceed, but does not mandate that it must. However, once someone has given consent, no other person has the legal right to revoke it and the decision whether to proceed with any activity (such as transplantation para 76(g)) rests with the person who will be undertaking it.
The doctors and nurses should sensitively and in a caring manner seek to support the family (defined Human Tissue Act 2004 s 27(4)) to respect the wishes of the deceased in order to ensure the best chance of those wishes being fulfilled. The doctor in charge of the case is usually best placed to perform this duty, though a member of his team may be more effective.
Inducement
The suggestion has been made that if the NHS were to be legally authorised to pay the deceased’s estate for a donated organ, say £x,000, then the bereaved refusing family would withdraw their objection and give consent. However, people with religious, moral or ethical objections are unlikely to be persuaded to change their minds because of money. Furthermore, what may be seen as an attempt at state bribery may be seen as unpalatable to many right-thinking people. Commercial dealings in human material for transplant are prohibited, a criminal offence Human Tissue Act 2004 s 32.
If opt-out were to be adopted in England, the Department recognises that special provision may be necessary for particular groups of people:
People holding genuine religious or faith objections. Minority ethnic people from overseas who are more vulnerable to certain diseases. The mentally incapable. Children not yet Gillick competent, i.e. not yet old enough to act independently in medical matters.
Leave it as it is
It is submitted that the current situation should remain as it is. Overruling the wishes of the family, and at a time of bereavement, is undesirable and could be counterproductive. Family co-operation can be of real help to transplantation doctors. The organ donation problem should be seen not as a legal problem but as a social problem, to educate the public into a positive frame of mind, so that they see the merits of organ donation, and respect the wishes of the deceased, their loved one. Coercive and compelling and potentially punitive law is highly unlikely to persuade people. Indeed, a family at present willing to consent might as a result of new perceived punitive law change their mind and even refuse consent. Encourage, educate and persuade should be the principal approach in matters of religion, ethics and morals. Although a majority of people appear to favour the principle of opt-out and consent for transplantation, a substantial minority are still strongly opposed, and minorities should be tolerated so long as they are not acting in a positively harmful manner to society.
Paradoxically, strictly and technically where the deceased consents to organ donation the existing law entitles the doctors to go for transplantation, subject only to the regulator the HTA and to the Code recommendation that they should consult and support the family. The problem, if such it be, is that in practice objection by the family usually means no transplantation. The solution in legal terms would be expressly to dispense with consultation with the family or to say that even if the family is consulted any objection must be overruled or ignored. Such a law would be politically unacceptable, and a grave affront to many a religious, moral, ethical and devoted family. State control of the body, nationalisation of the body, is unacceptable to many people.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.