Interpreting organ donation refusal is different for living donation and deceased donation.
In living donation, a family member has to decide whether to donate part of their organ to help save the life of their loved one suffering from organ failure. The consideration to donate or not is a personal one motivated by love and sacrifice and countered by fear (of undergoing surgery, experiencing pain, reduction in functional capacity and a very small chance of death). It may also be subject to the pressure of expectations from family and society.
In deceased donation, the decision to donate organs falls on the immediate family since the person whose organs are to be donated is already brain dead. About 30% of families approached for organ donation eventually consent. Some of the reasons for refusal include;
- The shock and suddenness of the event. The common reasons for brain death include road traffic accident with head injury or a stroke. The family of a person who was well a short while ago receives completely unexpected life-changing news of their death. They need time to go through the grieving process and reach acceptance. The thoughts and questions going through their minds do not include organ donation. Involvement of a trained grief counselor at an early stage helps the family to come to terms with death and improves consent rates.
- Lack of awareness regarding brain death and organ donation. Brain death, though medically and legally recognised as death is a condition with which the public is unfamiliar. When they see their loved one in an ICU, connected to a ventilator that is breathing for them, monitor showing a pulse rate and blood pressure (maintained with medications), it makes it difficult to believe they are irreversibly dead and easier to hope for a miracle that they might come back to life again.
- Family members with strong opinions against organ donation. Legally, only the consent of the next of kin is is required. However, family equations in India are complex and various members may weigh in with their opinions. In such situations, strongly negative opinions negatively impact on the decision to donate organs.
Eventually, both living donors and families of deceased donors are quite satisfied with their decision to donate organs. The majority of live donors once recovered from surgery report that their quality of life is excellent or good and that they would choose to donate again if there arose a need. For deceased donors, their loved one has given life to 6 persons who could have otherwise died and they will be remembered and honoured by all the recipients for their lifetimes.