False hope is the anticipation of an unrealistic event.
Parents often use this misplaced hope to diminish emotional anguish when reality is overwhelming. For example, when doctors recommend removal of a child’s eye, or when life saving therapy is not possible.
This is a form of denial. While it can be cathartic in immediate crisis, it becomes damaging and potentially fatal when it prevents parents from making good decisions about their child’s medical care.
Effects of False Hope
Parents are especially vulnerable to false hope when exploring alternatives to proposed surgical removal of their child’s eye. They may misinterpret information or be manipulated into accepting experimental therapies that avoid eye removal surgery. This can significantly delay life-saving surgery, and quickly become fatal.
When chance of cure is remote, parents may forfeit precious time and quality of life by pursuing multiple invasive therapies, or become vulnerable to damaging manipulation of faith healers.
This denial of reality results in poor judgement, goal oriented behaviour, missed opportunities to enjoy life, and damaging build up of emotional stress. This can lead to sudden and dangerously deep depression, or prolonged post traumatic stress disorder..
Preventing / Withdrawing False Hope
Preventing or overcoming false hope requires patience, understanding, love and realistic encouragement from friends and medical professionals. Support may range from sharing a strong hug or silent presence to difficult and repeated discussions about treatment options.
Medical professionals and others caring for children with retinoblastoma are usually careful to avoid the creation of false hope. Giving a balanced view of treatment risks and benefits, and being honest about the potential outcomes, is essential, especially when discussing alternatives to eye removal surgery.
False hope can be prevented by introducing families in crisis to others who have already passed through the storm. This can be particularly helpful when parents are facing the decision to remove their child’s eye. Knowing that children can – and do – thrive with one or even no seeing eyes is of great comfort to parents at this very emotionally charged time.
The effects of false hope can be reversed by replacing unrealistic anticipated events with achievable ones. Medical professionals, other carers and friends should avoid phrases like “nothing more can be done” as this can unintentionally lead to equally damaging despair.
Even when a child’s prognosis is bleak, or there is no alternative to eye removal surgery, there is always room for true hope. Something can always be done to bring comfort, encouragement and enrichment to life, and that “something” is the seed of true hope.