One of the first books I read right after the death of my son Gabriel, was The Tunnel and the Light: Essential reflections on life and death, by Elisabeth Kübler-Ross, a Swiss Psychiatrist who lives in the USA. At that time I was attracted by the promise of discovering everything about the exact moment of death. I, just like so many others who lose someone dear, wanted to know more about the tunnel and the light and everything that happens after death. This book raised part of this enigmatic veil that sets us apart from an unknown territory about which we have at the same time a relation of fascination and disbelieve. The book The Tunnel and The Light bring reports from people who experienced “near death” experience. They have been there and came back. I didn’t know but I was being introduced to an author that would change the way I see and understand death and dying. This was by the way, the title of her first book that I would read afterwards. On Death and Dying, published in 1969 by Kübler-Ross an authority and internationally renowned on this subject.
The work based on the great work of her life, being with hundreds of patients when their time comes, has changed the way doctors and the medicine face terminal patients. Through long, affectionate and exhausting conversations with more than 200 patients, some of them fully reproduced at the book, Dr. Kübler-Ross could identify the five stages that a person with a terminal disease goes through. Understanding each one of them helps doctors and caretakers as well as the patient him/herself and, more important, Family and everyone else who is around and beloved ones.
The first phase is denial. “It can’t be true, not with me. There must be a mistake”, say patients who have received directly or indirectly the news about a disease. Denial works as a kind of “bumper after shocking and unexpected news, giving some time for the patient to recover”, explains the doctor. Usually denial is a temporary defense, substituted quickly by a partial acceptance.
The second phase is anger, anger to admit that we were “chosen” with something bad without cure. This is the time when the patient becomes “difficult”, uncompromising and with little patience to undergo the proposed therapies. If we understand the scale of suffering at this phase and how pain and fear make this patient irritated, we will change our reactive attitude towards him/her and, as a two-way process, the change will cause positive effects for both the patient and everyone around him/her.
The next phase is the bargain. It is easy to recognize it if we make a simple analogy with the child’s behavior who wants something that is denied by the parents. First she gets rebel, cry and scream. When the child doesn’t get anything with this she searches a new tactic: I promise to be good to be “rewarded”. Generally the bargaining is done silently with God to receive the desired grace, the miracle of healing.
The fourth phase comes from the failure of the bargain and it is depression. Its understanding is one of the key points to take care of the patient. At this phase there are two different types of depression, they deserve different approaches. The first involves the natural concerns of those who want to leave the organized life. The person worries about who will stay, with the children if they have any, with the remaining time and what they can do with it. At this point some tend to regret what they didn’t do or live. The important thing at this time is to keep their thoughts away from it, to encourage the patient showing that they don’t have to be sorry for anything, that everyone loves them and that they are well and therefore encourage them to have more courage.
In the second kind of depression, Dr. Kubler-Ross describes, the patient; rather than considering a past loss, it takes into account imminent loss also. “Our first reaction to people who are sad is to try to encourage them. We try to encourage them to look at the brighter side of life, the positive things that surround them. This can make sense when it comes to the first kind of depression. In the second, the patient should not be encouraged to look at the brighter side of things. He is about to lose it all. If only we let him express his regret, accept more easily the situation. You will be grateful to have company without having to constantly listen: don’t be sad.” This kind of depression is silent.
The fifth and last phase is acceptance, found, after all, by those who had help and time to overcome the earlier phases. At this time, Dr. Kübler -Ross describes a certain degree of “quiet expectation”, which should not be confused with a happy phase. It’s almost escaping from feelings, writes the author, a deep weariness state and a gradual need to increase hours of sleep. It is in this final hour, says the psychiatrist, that the family is needs more understanding and support, even more than the patient himself.
On Death and Dying – Elisabeth Kübler-Ross
Editora Martins Fontes