• Any decision reached by the family members based on the right information earns the family a sense of closure.
• Their refusal to consent to donation at the time of death of a relative who is a potential eligible donor significantly reduces organ availability.
Image: COURTESY
Until the gap between the demand and availability of organs for transplantation is closed or minimised, patients on waiting lists will endure unending suffering, while the mortality rate rises.
Family members play a crucial role in the success of organ donation, and their refusal to consent to donation at the time of death of a relative who is a potential eligible donor significantly reduces organ availability.
Here in Kenya, under the Health Act 2017, medical practitioners have the legal authority to proceed with organ retrieval without needing family consent, where a competent person, through an expression in their will or by making an oral statement in the presence of at least two competent witnesses, donates their body or any specified tissue to be used after their death.
But even so, relatives remain actively involved in making the decision to donate or not, and their refusal thereof reflects the myths and beliefs in regard to organ donation, held by the society as a whole.
Our cultures and religious activities influence family decisions to refuse to give consent to donate their deceased relatives’ organs. And this is not necessarily an organ donation issue in isolation, it basically has to do with how bodies are handled in Kenya.
As we saw the other day, the wishes of the late Kibra MP Ken Okoth to have his body cremated were being challenged because it was against the culture of the deceased's community.
This begs the question, what should take precedence: a person’s autonomy over their body or their culture? But, before we even attempt to answer this, it is of equal importance to understand the factors that lead to positive feedback when families of the deceased are approached with organ donation decisions.
Considering that family members are required to make organ donation decisions during profoundly stressful circumstances involving the loss of a loved one, skilful communication while presenting the opportunity for donation is key.
The medical practitioners should explain the definitions, such as brain death, and the process of donation in a way that will address any insecurities the family members have. They should also show support to the families during this moment of grief. This way, the family will be well-informed and more objective while considering donation.
The beliefs and values of the family should be put into consideration. Some families find comfort in donating and view it as a way of helping others and creating a positive outcome of a disastrous situation. They view donation as a way of giving meaning to their loved ones, and they also want them to continue living in those who will receive their organs.
Actually, they view donation as an alternative to switching life support machine off (for those on life support). On the other hand, there are those families that look at donation as mere mutilation, disfigurement of the deceased body, and thus are opposed to it. And they all have the right to have their beliefs and opinions respected.
The quality of medical care and the respect accorded to the deceased during the ailment period and after death is also a contributing factor of consenting to organ donation. Family members feel they are obligated to respect and protect the bodies of their loved ones, and thus oppose any alterations of their bodies upon death. They expect the practitioners to treat their loved ones with the same respect, to the point that, should they decide against donation, the practitioners will accept their answer.
Regardless of the decision to donate, whether for or against, family members are entitled to information that will guide them while addressing the dilemma of donating organs. This information will be helpful in modifying any false beliefs they might hold. Any decision reached by the family members based on the right information earns the family a sense of closure.
While it is true that the refusal of family members to give consent is a major contributing factor towards the shortage of organs, and that most people miss out on potentially life-saving transplants due to refusals from family members, medical practitioners should not view family members as hurdles to elude. Notwithstanding their duty to help living patients, medical practitioners should also put into consideration the feeling of loss on the part of the bereaved family members.
As the medico-legal jurisprudence continues to take shape by, among other things, seeking to balance the conflict between the desperate need for organs against the desperate need for cultural and religious tolerance, informed decisions by family members, whether for or against donation, should be treated with utmost respect.
Elizabeth is an Advocate of the High Court. Associate at Ibrahim Yakub & Associates Advocates. She is passionate about Medical Law and Ethics, most especially the ethics of both living and deceased organ donation and transplantation