“It was an entire month of chaos.” This is how Eliana, who is 32 years old and lives in Villa del Parque, describes the days she lived when she, her parents and her three older aunts became sick with coronavirus. Everyone except Eliana was hospitalized and she was isolated in her house, with the enormous concern of how to stay connected. The evolution of the medical prognosis was not the only thing that distressed her (that part she received every day from the treating team), but to know how their family members were coping emotionally with isolation and uncertainty. One afternoon the phone rang. It was Guillermo Mammana, a doctor at the Tornú Hospital, where his aunts were. “He started calling every day to tell me that he had seen them and how they were feeling. Knowledge gives you peace of mind“summarizes Eliana.
That “tranquility” of which Eliana speaks is the one that seeks to transmit the Estar Program, an initiative of the City government that since late April offers psychological, social and spiritual support and accompaniment for patients with Covid-19 and their loved ones, with a comprehensive perspective that seeks to humanize care. In the event of death, it is proposed to be present with the families from the moment of the news and to support them during the mourning. It works by a network that includes 19 Buenos Aires hospitals who receive positive diagnosis cases and has the support of civil society organizations, who work in an articulated way making their volunteers available.
They all share the same vision: that communication, accompaniment and family closeness are as valuable as medical care and treatment. As there is no possibility of visits, the vast majority of interventions are made through phone calls or video. If patients do not have a cell phone, a team member provides one. In case a face-to-face approach is valued and strictly indispensable, all the protection regulations are complied with. So far, more than 1,100 people have been accompanied and 3,700 calls have been made.
“Isolation, distancing and information, which is often insufficient or distorted, causes suffering in the patient, beyond the severity of the disease; but also in the family and in the healthcare team itself, because sometimes one does not find the best way to help and because it can also be spread, “says Gustavo De Simone, a specialist in palliative care at the Udaondo Hospital and a member of the program’s coordination team, which also includes members of the Ministry of Health and the Secretary of Cultural Transformation of Buenos Aires .
De Simone exemplifies this with the case of a patient who was a grandmother, her daughter was going to have her second baby and she had to remain in charge of the older grandson. However, she was infected with Covid and needed to receive oxygen support. Although this situation was reversed, the professionals detected that she was very distressed at not knowing what had happened to her daughter, the delivery and her grandson. When the nurse gave her a phone to contact her family, the woman said, “This was the oxygen I needed.” In short, for De Simone, “the program supplements the oxygen to the lungs with what is needed to deal with suffering in a healthier way. That is the philosophy.”
Closeness, containment and understanding
How to be close at a distance? How to avoid dehumanization in a context that appears as unforeseen as hostile? The program has two main legs: the Comprehensive Care Team (ECI) and the Spiritual Support and Grief Team (ESED). The ECI is in-hospital and is made up of members from the areas of medical clinic, palliative care, mental health, social work, chaplaincy, nursing, occupational therapy and kinesiology. In total, there are more than 150 health professionals. The ESED, on the other hand, is out-of-hospital and is made up of 300 volunteers: there are institutions representing different cults, such as the Santa María Spirituality Center and the Rabbinical Seminary. In addition, civil society organizations specialized in psychological containment and in accompanying those who are passing through the end of their lives and grieving relatives, such as Pallium Latin America, Femeba and Icalma.
I like to use the three ‘C’s of closeness, containment and understanding. It is a compassionate closeness, because it goes along with what is happening to the person, understanding through listening
Inés Ordonez de Lanús, volunteer
“What we saw was the need to focus on this comprehensive view of the person“says the doctor Mariela Bertolino, from the coordinating team of the Estar Program and responsible for the Palliative Care Unit of the Tornú Hospital-Femeba Foundation. For her, the needs of each patient and their families are as particular as each person. sense, Inés Ordoñez de Lanús, founder of the Santa María Spirituality Center, which has 800 volunteers, contributes: “The common denominator is the need to be close, to feel that there is someone who knows what they are going through. I like to use the three ‘C’s of closeness, containment and understanding. It is a compassionate closeness, because it goes along with what is happening to the person, understanding through listening. “
The program targets all patients: it does not matter that the impact of the disease is mild, moderate or severe: “The clinical seriousness is not necessarily the same as the psychosocial complexity,” explains Bertolino. “Therefore, the program has an encompassing perspective. of all the experiential aspects of having coronaviruses. “
Clinical seriousness is not necessarily the same as psychosocial complexity. For this reason, the program has a comprehensive view of all the experiential aspects of having COVID
Mariela Bertolino, doctor
Social stigma, the burden of feeling responsible for contagion, fear of death, anxiety about how loved ones will be, uncertainty and anxiety, are some of the issues that often arise among patients, their families and the program team. For De Simone, suffering is inevitable but, if it is also intolerable, it becomes an ordeal. “If you go through it accompanied, many times you can come out transformed and even strengthened those situations. For that reason, more than to do, it is to be,” reflects the doctor. And she adds: “If we see reality only from the perspective of the virus, we are on the one hand helping to control the infection but we run the risk of dehumanizing. If we see it from the perspective of the person, we understand that And being accompanied is a right“
For Eliana, talking to Guillermo every day was a piece of mind. In addition, her 65-year-old aunt Virginia told her that she received a message of encouragement on her phone every day from a person she did not know, but who sent her positive phrases that she loved. 15 days ago, everyone was discharged. “I felt very supported and my aunts told me that they were never left alone, that they were always accompanied,” concludes Eliana.