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Teaching how to die

Is it possible to die well? How can we improve the end of the life of a terminal patient? Dr. Ana Claudia Quintana Arantes, specialist in Palliative car has been helping a lot of people (and families) to go through the moment to say goodbye kindly and with love
Ana Claudia Quintana Arantes is specialized in geriatrics and palliative care - area that seeks to improve the quality of life of people in the face of incurable diseases
Ana Claudia Quintana Arantes is specialized in geriatrics and palliative care – area that seeks to improve the quality of life of people in the face of incurable diseases

Who gave the floor to Dr. Ana Claudia Quintana Arantes has no desire to take it back. Ana Claudia is so sensitive, so charismatic, and so full of wisdom and good stories that you can listen to for hours and hours and still end the chat wanting more. Specialist in geriatrics and palliative care – area that seeks to improve the quality of life of people in the face of incurable diseases – she takes care of patients (and also the families of patients) with a giant kindness as her broad smile. Patients are many (Ana Claudia works at Albert Einstein Hospital and the NGO, Care House) and so the time runs. A short conversation over an hour I and Cynthia de Almeida, our colleague here on the website had with the doctor resulted in the interview we publish here almost in full, in three chapters (this is the first one). Very little was left out – simply because everything is good! With the word, Ana Cláudia:

Why did you choose to work in the area of ​​palliative care?
In college I had a hard time seeing the suffering of patients. To who was in pain, I suffered together. In cases where there was no possibility of treatment I saw families in a state of total abandonment … I wondered: ‘There is no way for the disease, but what about his/her pain and the family? Won’t they do anything? ‘. And there was the damn phrase, “but there’s nothing to do!” I could not accept it, I was urging teachers all the time. They teach us to see the patient as a demonstration tool for diseases and I wanted to see the person through the illness. Then I went to look for psychological help to people who gave support to the students. The psychologist told me, “you are very sensitive, you can not mix things up.” I was still suffering, so I decided to quit college. I was out of USP for six months, but as I could not find anything I could do, I ended up coming back and managed to finish it. Then I had to decide the residence, I liked geriatrics the most. I thought to be closer to older people should help with the concept of death, which for me was so hard … Seeing regular aging, maybe would help me discover something about it. I opted for residency in geriatrics. Interned many cancer patients, most untreated conditions … And I took all the dying ones. Nobody wants to take terminal patients, since you do not need to do exams, to save. At the residence I met a nurse who gave me a book that changed everything:On Death and Dying by Elisabeth Kubler-Ross. That night I read the whole book and it was … You know Moses when the sea split? I was drowning in my suffering, not knowing what to look for, but reading the book showed me one direction: palliative care.

Why was this book so important?
The great dilemma of people is not knowing to ask the question. And if you do not know how to ask the question the answer does not come. The book helped me to find my questions

What questions do you usually ask the patients?
I try to map the emotional context of the patient. I always ask three very important questions:
1. What are you afraid of?
2. Why do you think it’s worth being alive?
3. What are you willing to do to stay alive?
If you say you are afraid of pain, I say you can rest easy because we have medicines to help. If you tell me that it is worth staying alive because of your children, I ask what you do to go near them. Assuming you answer “I do everything”, I ask, “Would you do surgery? Would you go to ICU because of your children? Would you do dialysis? “I need to offer treatment paths considering the reasons for the patient and not for me as a doctor! I had a patient with advanced prostate cancer who did not want to do dialysis. I respected. Until a time after his daughter became pregnant and he changed his mind. Then the hard part was convincing nephrologists; dialysis recommendation for a patient with advanced cancer. The staff mocked me: “where did you get your specialist degree after all ?!”. I said: “Look, a recommendation of dialysis is an extension of his life, with a degree of suffering, but suffering that will make some sense because this patient will get to know his grandson.”

If the teaching of medicine focuses on disease and not on the sick person, palliative care should not be highly valued in hospitals … It must be hard to work in this area, right

Overall, palliative care is considered a failure or a minor care. You look at the home care service of these companies  and they say that are caring for dying patients … Not really! They send the worst professional because they think that, since the patient will die, there’s nothing much to do. Then take the worst technician, the doctor who has just started, the frantic psychologist and send all these crazy people to take care of the dying patient. But these patients don’t have time to waste on people who do not know what they are doing … it is the opposite! They have to receive visits from more experienced. I was fortunate to work with an oncology team at the hospital Albert Einstein and more mature in this matter of success and failure. In other areas it is still a taboo not be able to save the patient, but in oncology death is more present because in many cases cancer is a death sentence. It was that familiarity with these doctors that brought me to the greatness of not knowing.

What do you mean?

One day I was assisting a super renowned professional in the care of a lady who was his patient for many years. He just told her that he did not know what to do. He said: “I cancelled my consultations today and will meet some friends to discuss her case and hope to return with a proposal.” I was so impressed with it … Later, I went into this lady room imagining that she was wrong and thinking about what I could say … But she was great, talking with friends and saying that she was happy because she had the best doctor in the world. She said proudly, “he cleared his office to study and take care of me !!!”. I was five years with this group of doctors. After that experience I was invited by the Hospital to expand the work, implementing the palliative care policies in the hospital, including training people to provide care. Anyway palliative care entered a large hospital by the front door!

Who is the palliative care patient?

Every person who has a serious and incurable disease. But there are instances where the onset of the disease shows no symptom. So when there is a clear need for palliative care? When the patient has the disease progression and the treatment that is offered does not alter the natural course of it. So the person makes the treatment to have better quality of life in the time they have left. I have a patient who received a diagnosis of cancer in a routine examination and had no symptoms of the disease but had treatment. So she came to me to take care of these symptoms.

Do you also deal with the emotional symptoms?

You have to deal with everything that permeates the sick person’s condition, also considering how she feels about what she is going through. Because dealing with reality is an absolutely individual business. Some people want to know the disease itself deeply; some people prefer not to know …

What do you do in those cases where the person clings to anything to deny his/her own situation?

I had cases like that, but it is very difficult to come to me because my request service assumes that there is acceptance of the possibility of dying. I have gone through experiences in which the family had different opinions. I received a man once and his doctor said there was nothing else to be done, but the family chose not to tell him because he did not want to know. What does this experience show? To lock the exam in a drawer and say that leukocytes are weak and try to minimize the problem doesn’t make any difference.

The sick person knows, because her body knows! If she can not get out of bed, there’s something wrong going on, is not “just a little thing.” But there are people who die in denial. It is not hope, it is an illusion. This man did not know the truth but dealt with it. Said his goodbyes and ran all the processes a person who knew would do He dealt with reality and not with the news you know? And what matters most is dealing with reality.

Many doctors advocate this idea that one must always tell the truth to the patient …

Yes, many people say that the patient has the right to know and I agree – but since he wants to know! Some people even think they know … The contact with this gentleman was very beautiful. I got to the hospital, introduced myself and explained what I could do for him. I said I would come back later. He waited for me until 23h. I asked “How do you see everything that’s going on?” And I was making a summary of his framework, recalling the five years of living with the disease, all blood transfusions … He was agreeing with each reference and in the end I asked again, “How do you see everything that’s going on ?”. He called his wife and said, “Love, how do I see it all?”. At that moment I understood that he would only see what she allowed him to see. And I knew I had to work with her. If I could get her to accept the process of reality I would find ways to work with him. In a case like this, the most fundamentalist professionals defend that we have to tell. They have been living together for 60! Who am I to say that this couple is not working right? I have to dance to the music they play.

How did you finish this story?

Over time the woman calmed down and allowed more … Before she did not let friends to visit her husband because she thought that when he saw the reaction of other people he would understand what was wrong. Then I said: “It is wrong … He highly values ​​his friends and he does not have much more time conscious. Wouldn’t it be nice if he had these great moments?”. Then with the time she opened this space. I try to show people that the tear is good!

(Watch the lecture of Dr. Ana Claudia at TED and read the second part of the interview next week)