Making a Life-Saving Difference: Organ Donation and Consent
John Kleinsman
Issue 13, August 2004
As reported in the last issue of The Nathaniel Report (number 12, April 2004) New Zealand has one of the lowest organ donation rates in the world. Since then the Ministry of Health has initiated a review of the regulation of human tissue and tissue-based therapies, including the practices surrounding organ transplantation. Two key questions have emerged in the debate around organ donation: What sort of consent is required? Should an individual's wishes always be followed?
Human beings are at once corporeal and spiritual. Yet, while accepting such a distinction (sometimes expressed in terms of body and soul) that distinction does not support a dualistic understanding of the person. The body is not merely a vehicle or container for the person. Spirit and matter are not two natures united, but rather their union forms a single nature. (Catechism of the Catholic Church, 365) Thus, a person's body is integral to, rather than incidental to, one's personal identity. This insight is not uniquely Catholic/Christian. In New Zealand it is reflected in the longstanding current law which holds that no one can ever own the body of another. To desecrate or violate someone's body is simultaneously to desecrate and violate the person.
This starting point highlights the responsibility we have to show utmost respect to a person's body at all times. Therefore, the use of all or parts of a person's body should only be done with appropriate consent and for good cause.
The nature and importance of consent:
A system of presumed consent has been suggested as a means of increasing New Zealand's organ and tissue donation rate. Presumed consent presumes that everyone is an organ or tissue donor unless they have specifically recorded their objection to being a donor. Such systems operate in a number of countries overseas.
In its submission on the Ministry of Health's Discussion Paper [1] The Nathaniel Centre opposed the introduction of a system for organ donation in New Zealand based on presumed consent.
Organ donation is often referred to as an 'enduring gift'. This description highlights that the decision to donate organs or tissue must be explicit, free and informed. No one should ever presume such a gift. From a moral standpoint the donation of one's body is a rich gesture of generosity to fellow humans, not something that anyone should feel obliged to do. This has been highlighted most recently for us in New Zealand by Grant Kereama's donation of a kidney to his friend, sporting personality Jonah Lomu.
Presumed consent for organ and tissue donation is only ethically acceptable when there is an established and proven high level of information and understanding in the general population. Otherwise presumed consent becomes a substitute for informed consent rather than an expression of it. Levels of informed awareness about organ and tissue donation are currently low within New Zealand. Therefore, the introduction of legislation based on 'presumed consent' would represent a significant shift in emphasis from giving to taking.
The potential good of someone's body to another person is not adequate reason for taking any part of their body without the explicit, free and informed consent of the person involved. This amounts to an erosion of personal autonomy. An increase in New Zealand's organ and tissue donation rate can be achieved in other ways that will uphold basic human dignity, and allow organ donation to continue to be a free expression of human generosity.
The objectives of increasing current donor rates seem to be best balanced by taking an approach that aims to ensure that everyone who is suitable to be an organ donor is offered or their family/whanau is offered the opportunity to be a donor. (MOH Discussion document C4.2) For this to happen there is a need to look closely at ways of educating the community as well as implementing a suitable and robust means for people to have their wishes recorded. The current process whereby individuals record their wishes when they renew their driving certificate has significant shortcomings. It excludes non-drivers and does not provide persons with either the time or information to make a properly considered choice.
The suggested requirement that health professionals discuss organ and tissue donation with all patients entering hospital is also not an appropriate way to achieve an increase in donor rates. The reality of feeling unwell, combined with being in an unfamiliar environment, results in a state of vulnerability which again is not conducive to good, free, and informed decision making.
Should a person's wishes always be followed?
The autonomy of the patient is a fundamental principle of healthcare in New Zealand. However, the current situation is that even when a person has indicated on their driver licence that they wish to be a donor, their family can override that wish.
While recognising that the principle of autonomy exists alongside - and may at times be in competition with - other important principles, respect for the dignity of a person implies that their expressed wishes as to what happens with their body after death should be upheld. This principle should only be departed from in exceptional cases.
Nevertheless, the decision a person makes to donate their organs after death makes significant demands on their family and friends. The reality of organ donation is that death must occur in a highly medicalised environment. There is a certain indignity and considerable stress for those who experience the death of a loved one in these circumstances. The advantage of not departing from current best practices around organ donation (whereby health professionals will only proceed if there is family or next-of-kin approval) is that there is a guaranteed incentive to work closely with, and be sensitive to, the multiple needs of the family of the person concerned. There may not be the same incentive for health professionals to work alongside family if future regulations or legislation were to insist on a strong presumption in favour of acting on the dead person's wishes regardless of her/his family's approval.
Family reaction to potential organ donation is often related to the way in which the topic is broached with them. In some hospital environments, independent personnel specially trained in grief and trauma and with specialised knowledge about organ donation manage this process. The advantage of such personnel, apart from being specially trained, is that they are not involved in decisions around care and treatment options and nor are they involved in the actual transplantation process. Thus the clear separation between those assessing the likelihood of death and those involved in any subsequent transplantation is guaranteed. They can also address the particular grief needs of the deceased person's family without having any perceived agenda. Such a process would in most cases resolve family concerns while aiming all along to uphold the express wishes of the deceased, bringing about a win-win situation.
The importance of keeping family closely involved becomes all the more evident when one considers that a sustained campaign to increase donor rates has the potential to change the dynamic around end of life decision making. With a more focused drive to source organs comes an increased risk of decisions being made that may not, in the first instance, be in the best interests of the critically ill/dying person. The participation of family and loved ones in the decision whether or not to withhold or withdraw treatment or life-sustaining equipment is thus an integral part of the care of the person and a key to ensuring any risk of abuse is minimised.
Another part of the solution to this dilemma is to increase levels of public awareness and education around organ donation. This will hopefully mean that more and more people will have discussed their decision to be a donor with family at the time when they make their informed choice and well before the actual circumstances in which their decision needs to be effected. Research shows that when a deceased person has shared their wishes about becoming a donor, the family invariably honours those wishes.
What if the wishes of the donor are not explicitly known?
Organ and tissue donation is in the nature of a personal gift. If the wishes of a potential donor are not explicitly known, some would go so far as to argue that no-one can stand proxy in a genuine act of self-giving. While we would want to rule out absolutely the state claiming the right to use a person's body when there is an absence of explicit consent, the immediate family or next-of-kin can give consent if they can genuinely and accurately determine it is what she/he would have wanted. This approach does not undermine the nature of organ and tissue donation as a expression of generosity.
Conclusion:
A comparison of New Zealand organ and tissue donation rates with other countries shows that we have one of the lowest donation rates in the world. A new and more effective strategy is certainly required to increase the rates of organ donation in New Zealand. However, the nature of organ and tissue donation is that it is a gift. This must be respected absolutely. The principle of respect for autonomy implies a strong presumption to act in accordance with an individual's expressed wishes. The dynamics around end of life decisions, not to mention the needs and grief of family and next-of-kin, require that they remain closely involved in the process and that every effort be made to ensure their support for a person's wishes to be a donor.
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[1] Ministry of Health. (2004). Review of the Regulation of Human Tissue and Tissue-based Therapies: Discussion document. Wellington: Ministry of Health.
John Kleinsman teaches Moral Theology at the Wellington Catholic Education Centre and is also a part time researcher for The Nathaniel Centre, The New Zealand Catholic Bioethics Centre