WHILE organ donation has the potential to save lives, psychological barriers ranging from fear and misinformation to grief and family beliefs continue to prevent many Malaysians from pledging or fulfilling a loved one’s final wish.
The psychologist team from Pantai Hospital Ampang said fear remains the biggest psychological obstacle preventing people from becoming organ donors, with many concerns rooted in misconceptions rather than medical facts.
“People unfamiliar with organ donation often worry about how donating an organ, particularly as a living donor, may affect their future health and recovery.
“Questions about living with one kidney, surgical risks and time away from work can create anxiety, while some individuals may even feel guilty for voicing their concerns because they feel obligated to accept a request for organ donation,” they said.
They said a person’s decision to donate is influenced by psychological factors such as responsibility, empathy and altruism – the desire to help others even when it comes at a cost to oneself.
"Having knowledge about the benefits to the recipient, such as saving a life, improving someone's quality of life or instilling hope in others will naturally evoke altruism," they said.
However, fear of death, bodily harm and the unknown continues to discourage many Malaysians from becoming organ donors.
They said these fears may stem from concerns over body disfigurement, the donation procedure itself, particularly for living donors and spiritual concerns about the afterlife.
One persistent misconception is the belief that organ recipients inherit a donor’s personality, emotions or memories.
While such stories have circulated for generations, they stressed that there is no conclusive scientific evidence to support them.
“Humans tend to find meaning in their life experiences, leading recipients to subconsciously attribute random new cravings or personality shifts to their unknown or known donors.
“Post-transplant recipient’s patients will be on long-term medications called immunosuppressive medications, to prevent their immune system from rejecting their donor organs. These immunosuppressive medications alter chemicals in their body including brain chemicals which then would be experienced as changes in emotions, cravings, sleep and can be mistaken as changes in personality or identity,” they said.
They explained that this tendency is known as confirmation bias, where patients may interpret post-transplant experiences as confirmation of their existing beliefs.
“Exposure to information or stories about organ transplants before receiving a donated organ can shape a patient’s preconceived beliefs. After the transplant, they may immediately interpret their experiences as confirmation of what they already believed,” they said.
Rather than dismissing these beliefs, they said doctors should acknowledge patients’ experiences before explaining the chemical changes occurring in the body and brain.
“It is very real and common for patients to experience emotional changes after surgery. These are expected and are caused by normal chemical changes in the body,” they said, adding that such counselling is most effective when provided before the transplant.
Beyond misconceptions, they also highlighted grief as another factor influencing organ donation decisions. Families may refuse donation after the death of a loved one despite the deceased having registered as a donor.
"In sudden death, the shock and trauma experienced by the family can be overwhelming, making it difficult for clinicians to approach families during this sensitive period," they said.
They stressed that registering as an organ donor should not be the final step. Individuals should also discuss their wishes with family members while they are alive.
Such conversations allow loved ones to understand and emotionally prepare for the decision, reducing uncertainty and conflict if the time comes to honour a donor’s final wish.