Death and the Conspiracy of Silence
Our fear of telling someone they are dying.
Posted Feb 15, 2020
Not knowing what to say to someone who is dying is a problem for all of us. Professionals, as well as family members, struggle with what to say and how to say it. We are often at a loss for words.
We don't want to offend, hurt, or upset the dying. What can we say? Is it alright to mention the fact that we know they are dying? Do they even know they are dying?
There is often an unspoken agreement between the professionals, the patient, and the family not to talk about a terminal diagnosis and death. It is called a conspiracy of silence and can take several different forms.
In one, the medical staff and family decide not to tell the patient about the severity of their diagnosis. Families often feel that if the patient knew, they would give up trying to get better and would die sooner. Another is when the patient is aware of the diagnosis and prognosis but refuses to accept it or talk about it. Sometimes the patient is given a diagnosis, but the health care provider does not give any additional information about prognosis, and the patient doesn't ask.
The silence is also perpetuated when many different physicians are involved in a case, with each one passing the responsibility onto the other, and with no one giving the patient the information they need about the whole picture. Even a physician who has a relationship with the patient will sometimes call in a psychiatrist who is a stranger to the patient to inform them about their impending death (H. Peterson, M.D. personal communication, January 31, 2020).
When we can't even say the words death or dying, how can those of us without any training or experience tell our loved one that they are dying? This is the last thing any of us want to do. However, if this falls to you, here are some basic guidelines: be direct, honest, and to the point.
A conversation might go like this: "I have spoken to the doctor. Would you like to know what she said about your illness?" It is the patient's right to know as well as their right not to know. At times, the patient will ask if they are dying, and you should respond truthfully.
The reality is that most people are aware they are dying. If they do not ask, you can say, "The doctor is worried that time may be short and that we need to focus on keeping you comfortable. Let's talk to the doctor about this together."
It is a lot to take in as well as to deliver. You both may need to catch your breath. After you have told them, let them know that you love them and will be with them to make the most of the time that is left.
However, as hard as it is to deliver this news, what can be worse is the tension and stress of everyone pretending that all is well while hiding their pain and sadness. Each person feels that they should protect the other and especially the one who is dying. To deny the reality of death deprives the patient and family the opportunity of sharing how they would like to use the time available and to say and do the things that are most important to them.
Even on the deathbed, emotional growth is possible. Unfinished business can be completed, and the dying can achieve inner peace as well as peace with others. Knowing that death is near allows the individual to focus on those things that are most important for them. It can give the dying some degree of control over their life again by allowing them to make decisions about what is important and meaningful to them.
Decisions can be made about who they want to see and what they want to do. Arrangements for the family can be finalized, as well as plans for their burial or cremation. It allows the person to talk about how they would like to spend their final days. Ira Bayock has found that there are four things that matter most to the dying: asking for and giving forgiveness, saying "I love you" and "thank you."  But when death is not discussed, the dying are deprived of being able to have closure to their lives.
Delivering bad news is never easy for anyone. We all have our issues around death that make us uncomfortable. Fortunately, instruction in end-of-life conversations is now available for physicians in training as well as those who have been practicing longer. We could all benefit from such training.
1) Byock, Ira ( 19 ) The Four things That Matter Most: A Book About Living. New York. Atria Books