In the second part of the interview with Dr. Ana Claudia, she speaks about the mysteries and the most common fears around death. Read the first part of the interview here, and on Monday, check out the third and final part.
You told us you always ask the patients what they fear most about death … What are the most common answers?
People are afraid of the physical part of pain, feeling unbearable pain. There is also the fear of being forgotten and the fear of not having done all that could be done. Fear that life has not been worth it.
It must also be very common to fear what comes (or not) after death, right? Fear of the unknown.
People often say that they are afraid of after or during. There is a brilliant Gilberto Gil song. It is like this: “I’m not afraid of death, I’m afraid of dying, because I’m not in death anymore, but I do not know what will dying be like”. It is the process of dying, people are afraid of.
The palliative care patient goes through the experience of going through mourning of death itself …
Yes. The biggest grief is his/her and not the family. Because he/she says goodbye to everything and everyone and every family member only says good-bye all the time. It is an immense grief experienced while everyone is there, each in his or her own world, trying to protect his/her own pain. This grieving experience with the living person is called anticipatory grieving process. For the family, when given the chance to go through anticipatory grieving it favors healthy grieving process post-mortem.
How do you work with anticipatory grieving with the patient’s relatives?
First I must have someone from the family permission to deal with it. The fact that I was in the case means that someone has already granted this possibility. I start wondering how each one is facing the disease experience. If a child, for example, says that she thinks her father will overcome the problem, I’ll go with her all the way she created trying to show the process of deterioration. We talk about each step. I’ll ask if she realizes that in the years of treatment things have changed and have not changed positively. Then I ask, “How do you think he (his father) is?”. At that time usually the person cries, because they put themselves in the person’s shoes and sees that it is not easy for him. And when the person gets touched the possibility of death becomes clear.
The anticipatory grieving is better than the grieving process that happens all of a sudden and surprises the person who refuses to see the situation? How does this simulation facilitate facing reality?
In anticipatory grieving you have the test of death with the possibility of the presence of those who will leave. Then you rescue much of what you lost over a relationship. Suppose that in the case I mentioned above, this daughter recognizes that the father will die and tells me, “Okay, I understand, but I can not live without him.” Then I say that the father will be invisible, but it will continue being her father. He will always be her father. All he taught his daughter would still live in her; it will not be buried with him. From this conversation the person begins to visit his reality with the eyes of those who are saying goodbye. And understand what to do. Will go to his father’s bed and say, “I love you.” When there is death and the person did not say goodbye, she questions and laments: “Oh, if I knew it … I would have told him I you loved him.”
In a way you end up, in many cases, leading to a process of collective therapy … How to deal with situations where there are serious conflicts that must be resolved in a time frame that tends to be brief?
Who determines the treatment is time. If the clinical condition is measured in weeks then treatment is also measured in weeks. If the measure is in days, time decreases and the frequency of visits increases to the extent that the situation gets worse.
But how to work with complex issues that deserve years of therapy, in a situation that requires urgency?
In my palliative planet I have the chance to redeem us and reconnect ties … I often say that a grenade explodes and that the explosion releases a lot of things. It is another kind of explosion, in which the essence of life emerges. Before the end, nothing else matters and is in evidence which is essential. What is really important gets easier to handle. The one who is leaving realizes he needs to exercise its greatest state of human being, which is the loveliness. Human beings go through life hiding to not show love, and then when they will die they become who they really are. They say “ah, the old man is there, poor him, abandoned and nobody wants to see him” … You see, the old man is not a saint. Perhaps during his life he has not been a good person and has developed a bonding quality that leaves him alone at the end. I do not have anything to do with it and what happens is that I meet that person in a moment of transformation. I can love the relationship established there between she/he and me. It may be that the link that person built with family may not recover … But what experience has shown me is that the last impression is what counts. His father was a bastard but at the end of life he approached, was affectionate and changed the way to relate to him … he became the best dad in the world!
Is it true that people often feel a little bit better before they die?
An improvement just to say goodbye. This state of loveliness in which he/she gets into with the approach of death makes everything work well. There is a theory of anthroposophy that compares the state of loveliness to the pH of blood … When one enters this stage it is good to forgive, to give, to leave a good impression.
And how about that story that people sometimes expect some relative to come to say goodbye and only then, die? Does this happen often?
It has happened a few times. I took care of a girl for six years in the hospital and created a very strong bond with her. I dreamed of her and the next day we laughed when I arrived and told her the dream. I joked: “You never let me go, not even at night, huh?”. Once I dreamed that she came home with all the bells and whistles from the hospital and she was great, we chatted, drank coffee … It was fun. During these years there has been five or six times it looked like she was going to die, the family called the priest, but I myself never felt that she would at that time. And there was a time when she got worse and I dreamed of her coming in my house, hugging me and talking about his brother’s name with worry in her eyes. This brother had been a doctor, and he had a hard time accepting her situation, he said that his sister had died many years ago, the day she suffered the accident that left her hospitalized, and that all her suffering was meaningless. He could not deal with this suffering. After this dream I called him and said we needed to have a conversation. The agenda was full, we arranged for 10:30pm and he came with that face of “so what?”. I said, “So here is the following, there’s something you need to do that you have not done which is to say goodbye to his sister.” He: “But I’ve done it.” I insisted: “No, you haven’t, you’ll drink a bottle of wine, will get drunk and will talk to your sister because she will only go away when you tell her she can go, because she doubts that you can deal with her death”. He asked, “But, Ana, what does this have to do with all that?”. And I said, “After six years I already have intimacy to have this conversation with you, I do not know what that has to do, I just know you have to talk to her today.” He went there and came back home almost midnight… and in the morning his wife sent me a message saying he had been crying like a 10-year-old child. He sobbed uncontrollably and had never cried since the accident. My patient died shortly after. I came there to read the certificate and she was beautiful, beautiful, and beautiful, like an angel. He was in the room, approached me, hugged me and said in my ear: “I’m afraid of you, you witch!”. I replied smiling: “Do not make difficult questions.” My job made me accept the mysteries that are part of life.
(Watch the lecture of Dr. Ana Claudia at TED and read the third part of the interview next week)