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A lovely conversation with writer and palliative care specialist Ana Claudia Quintana Arantes

Updated: Nov 27, 2021

Ana Claudia Quintana Arantes is a Brazilian doctor specialized in geriatrics and palliative care. But she is not just a doctor, she is a bestseller author! :-D She wrote a book about her experience as a palliative care doctor in Brazil, in 2015, "A morte é um dia que vale a pena viver" (Death is a day worth living). Since then, Ana has become quite famous in Brazil, lecturing around the country promoting awareness about the importance of having palliative care as a discipline in medical schools from the very beginning, and advocating for the improvement of services throughout Brazil.


Since 2002 we have been working together and we have been caring for eachother as we develop in the field of palliative care. Ana is my partner in the foundation of the first NGO dedicated to PC in Brazil. In 2007, we created Casa do Cuidar together with Francisco Carlos Gomes do Santos(Psy) and Toshio Chiba(MD). In Brasil, palliative care became a specialty in medicine in 2012, so it is quite a new area of expertise that demands qualified professionals caring for patients and families in a huge country. Casa do Cuidar offers a one year specialization course in palliative care since 2009. It has been an incredible journey of learning and teaching at the same time.


Ana revisited her story in our conversation and said that when she was a teenager she joined a group in church, a teens group, and that was the starting point of her conscious journey in search for meaning in her life. There were hard times, as Ana felt the need to do medicine to be able to care for her grandmother and her sister. She felt an urge to alleviate the suffering she was witnessing in a daily basis (grandma had circulation problems and sister had a neurological condition).

From the very beginning of her graduation in medicine she wanted to help patients who were closer to the end of their lives, and she could not understand how people who were supposed to take care of other people were denying the proper care for the human beings who needed it the most. At the time, she became so disappointed that she gave up her studies for a few months and went to work selling jewelry. She wanted to move away from the pain she was witnessing and the suffering of not being able to offer any care. This process of facing suffering also took Ana to a difficult moment in her life when she felt she did not want to live anymore. She said she could not commit suicide ( she had seen patients who attempted suicide and she was afraid of ending up in the hospital just like a patient she once cared for). So when she was diagnosed with pneumonia she decided to let the disease take its course and did not take any antibiotics for many days. She spent a couple of weeks really ill, but afterwards she recovered. She felt that she needed to do something about her life then. She ended up deciding to become a doctor to be able to make the changes she felt were so necessary.

We met in 2002 when working in the same hospital, but in our conversation we realized that we both thought about becoming cardiologists when younger, so we joked about in a parallel life specializing in creating "cardio bridges" to uninhabited places in people’s heart and being able to enlarge a heart just so to fit more love and kindness but not making it insufficient.

When we started working together we realized that we both shared a love for palliative care and we became really close, working side by side with oncology patients and their families. The first patient we cared for together, Ana said to him “Look, there are so many uncomfortable procedures you had to go through here, I’m offering you music therapy, there is nothing that can go wrong with that. How about giving it a try?” Ana and I cared for him for a couple of weeks, offering emotional support through music therapy and pain relief, physical comfort and a more robust support through palliative care. After that we became bolder and we would often have each other's back when pushing for better palliative care in the hospital. That dynamic made the path for the creation of the 1st NGO dedicated exclusively to education and assistance in palliative care, Casa do Cuidar (Home of Caring).


 

In the continuation of our conversation with Ana Claudia Quintana Arantes she talked about how a traumatic experience caring for a young patient in his last hours triggered her Compassion Fatigue. After this event, when she witnessed the extreme suffering of a patient and his family she decided she could not continue working as a regular doctor. She decided to open a Spa and to become a Yoga teacher. She would still see patients, but mostly when they would be fine, in her spa, with their illness more under control. She could offer meditation, yoga and consultations. That was a plan. But , when talking to her therapist about it, he inquired about adding a social project that could benefit people who could not have access to palliative care in Brazil. Ana would talk about her dream to contribute to improve the services in Brazil, but it was this question that made her realize that she could change her project and do something more in tune with her dreams, in a way that she could still care for herself and do something about enhancing medical services still focusing on her role as a palliative care specialist, instead of adding new different roles to her professional life.

She met me at a cafe in the hospital where we worked and showed me the project she already had named Casa do Cuidar, home of Caring. I was in love with it and decided to be a part of it. Ana contacted 2 other people to participate, Toshio Chiba, a doctor also working in palliative care and Francisco Carlos Gomes dos Santos, a psychologist who had stopped being her therapist in order to join the team and work side by side in this idea.

We remembered about the first days exploring this dream in November of 2006. Alê Prade created the logo, and we did a couple of meetings aligning all the expectations and roles and we had our first event in Paulista Medicine Association.

Casa do Cuidar started offering classes about palliative care in 2007; short courses (4 day course) inviting all the Brazilian pioneers in palliative care. After that we offered a Caring for the Caregiver Project for one of the biggest hospitals dedicated to cancer patients in Barretos, São Paulo, currently called Hospital do Amor.

Ana remembered how we focused a lot of our attention on the theme of helping health care professionals to care for themselves, to be able to identify signs of Burnout Syndrome.


In 2016 Ana launched her first book “A morte é um dia que vale a pena” (Death is a day worth living). And after that she was in the spotlight. But this happened after her decision to change jobs and leave the hospital where we both worked together (Albert Einstein Hospital - one of the best hospitals in Latin America) to go to a public hospice in the outskirts of the city.

After that Ana got attention from the media, giving interviews to important journalists and calling people’s attention to the need of improving education in medicine and specially palliative care in Brazil.


Talking about death generates anguish and people usually avoid it. Ana dared in using the word DEATH in the title of her book and she talked about how this generated resistance. We discussed the reality that we all are going to die but we all dedicate a huge effort in blocking this reality of finitude. In palliative care we are exposed to this reality and we are called to take action in a way to make life meaningful. There are constant opportunities to develop awarenesses in working with people who are severely ill: We get to experience and witness the importance of relationships authenticity and dignity, and we get to realize that owning our mistakes and our power is important in order to live a life that we can deal with our own blames, remorses and guilts. In the end, the experience that palliative care offers, when we can practice assistance with dignity and respect for patient, family and team is an encounter with courage, love and hope. Not necessarily because everything will be ok, but because people are deeply aware of their vulnerability and there is an opportunity for healing.

In the conversation I mentioned how much people in powerful positions tend to think of themselves as immortals, and because of the financial power involved they attempt to make sure that they can get the best medicine in the world to make sure they will not die. Nevertheless, the reality is that they will die, maybe full of upgrades (as Yuval Harari already predicted), but human beings are bound for change, for growth, for transformation and for death. What kind of world would we build if we could openly talk about death? If death were not hidden in the ICUs, relegated as a medical event that reveals a person’s fault. To die is considered a mistake.


In palliative care there is a rescue of death as a natural event that deserves our respect and our care. Ana and I continued talking about this subject and I asked her about a situation that happened a few months ago in Brazil: The Association of Medicine decided to forbid video calls between family members dealing with Covid, in order to protect the privacy of the patient. However, the video calls were being used to provide last goodbyes to families in despair, to offer consolation for patients isolated in the ICUs, and to give the opportunity for patients and families to share a moment before the patient is intubated.


Ana wrote in her social media condemning the Association for such an act, depriving families and patients of the only possibility to be connected and to use this tool to better cope with the tragic situation. She received a judicial note from the association ordering her to remove her manifestation. She got a lawyer to deal with the situation and the escalation of the event with the increase of public manifestation defending Ana’s position got to the congress. There was a law to be validated in congress about the video calls, but there was a need for improvements. Ana participated in the rewriting of the new law, which now is already a current law that gives patients and families the right to express their love and their goodbyes.

There was a big campaign in Brazil using a # “Eu preciso dizer que eu te amo” (I need to say I love you), and in the end this situation got people more aware of the importance of palliative care.


It was a lovely conversation full of beautiful memories and the feeling of apprenticeship.


If you would like to know more about palliative care, there are many books and resources available.

You can access:

www.thewhpca.org

www.idpc.net/profile/International-association-for-hospice-and-palliative-care

www.hospicecare.com


And also Casa do Cuidar of course:-) (you can access the website in English)


Get to know more of Ana's work, click in the YouTube link below to watch her TED Talk:


https://www.youtube.com/watch?v=ep354ZXKBEs




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