‘Family veto’ dilemma and organ donation discussed in the media
The following opinion piece by Maeghan Toews is from a piece originally published in the Edmonton Journal, that features our CNTRP Project 2/Core 1 work on Family Veto research that is in collaboration with Canadian Blood Services.
The number of organs available for transplantation can’t meet the demand: No one will dispute this truism.
In 2012, there were more than 4,400 Canadians on transplant wait-lists with 230 people dying while waiting for an organ.
And it should not be forgotten that Canada, and Alberta in particular, performs especially poorly in this area. Canada’s deceased donation rate in 2012 was 15.6 donors per million people, lagging significantly behind the U.S.’s rate of 25.8 and Spain’s of 35.1. In Alberta, the rate was less than 10.
More organs will save lives — period. Steps need to be taken to improve both the Canadian and provincial record.
Recently, it was reported that Nova Scotia is taking a step that may address one factor that reduces the availability of organs: They are going to proclaim a law aimed, in part, at reducing the impact of the “family veto.” While exact numbers are not available, it is believed that family members often override the expressed wishes of organ donors. So even when an individual has complied with the legal requirements for providing valid consent, in practice it is the individual’s next of kin who make the ultimate decision of whether or not to proceed.
A representative from Ontario’s Trillium Gift of Life Network has reported that in that province, up to 10 per cent of families override the decision to donate of registered donors.
With each deceased donor able to donate on average three or four life-saving organs, this represents a significant loss to the thousands of Canadians on transplantation wait-lists.
A recent study revealed this problem is not unique to Canada. Health-care workers from only eight of 53 countries examined in a 2012 study reported they would act in accordance with the expressed wishes of an individual to donate in the face of family objection.
Although this widespread problem is one with very real and significant health implications, in Canada it is not a problem attributable to the law.
Current legislation in Nova Scotia and most other provinces (including Alberta) is already clear that an individual’s consent to donate her or his organs is legally binding and provides full authority for health-care providers to proceed with organ procurement. The new Nova Scotia law, which was actually enacted four years ago but has yet to be proclaimed, somewhat strengthens this position by explicitly defining the term “binding” to mean something that “must be followed” and by setting out the process through which an individual can withdraw consent (either in writing or orally in the presence of two witnesses with contemporaneous documentation signed by the witnesses).
Although these legislative changes seem like a step in the right direction, they do not actually alter the state of the existing law on the binding nature of an individual’s consent to donate.
Why are families routinely given the opportunity to override the legally binding decisions of their loved ones?
This may, in part, be attributable to a lack of understanding of the law on the part of physicians and the donation and transplant community. Another contributing factor is the desire by physicians and donation and transplantation professionals to avoid adding to the distress families experience at the time that the need to discuss organ donation arises.
While we appreciate that the procurement of organs almost always occurs at the most difficult of times when family members are struggling with an unexpected loss of a loved one, it is almost always an infringement of both the law and the autonomy of the individual to allow family wishes to override those of the deceased donor. In addition, it obviously cuts against the social policy of increasing the availability of organs that led to the enactment of organ donation legislation across the country.
The bottom line is that if a person has expressed a wish to donate, that wish should be honoured. Consent for organ donation should be enforced as is the case with other types of legally binding end of life decision-making such as advance health care directives and wills.
As the existing legal frameworks in Canada are supportive of this position, there is a need to consider non-legal strategies to address this issue, including physician education about the law and specific training on how to discuss donation with donor families.
Of course, there is also a need for more individuals to register for donation. Alberta recently established an organ and tissue donation registry enabling people to register their consent online or when obtaining a driver’s licence. Equally important, those wishes should be clearly communicated to family members and close friends. This would both reduce the likelihood of a family veto and ease the burden of decision making on loved ones.
As the need for organ donation is truly a life or death matter, it is vital that an individual’s consent to donate is respected and enforced as the legally binding decision that it is.
Maeghan Toews and Timothy Caulfield are with the Health Law Institute, University of Alberta, and part of the Canadian National Transplantation Research Program.