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COVID-19: A lived experience in Brazil

Posted By Isabela Castro, DDs, MSc, MBA, IA, FISQua, Sunday, September 20, 2020

In Rio de Janeiro, family members of COVID-19 patients continue to face the trauma of not having news about their hospitalized loved ones. At the Hospital Adão Pereira Nunes in Duque de Caxias, in the Baixada Fluminense, a patient was hospitalized for 40 days, and during that time, the family was not informed about the patient’s evolving condition. Elias dos Santos is intubated and in serious condition, which was the only information the family could obtain from the hospital. His sister-in-law, Arlúcia Ramos, says she is distressed, having already lost her husband and another brother-in-law to COVID-19. She says that the family goes to the hospital, but no doctor has ever provided current information about Elias' health status. The Director of the hospital, on the other hand, reports that since the moment of hospitalization, the hospital has attempted to contact relatives by phone using the number provided in the patient's record. Regarding Elias' case, she claimed that several times the responsible doctor tried to contact his family, but without success.” (Source O Globo, Journal.)


The first case of COVID-19 recorded in Brazil, in the city of São Paulo, dates back to the end of February. That Sunday night, after listening to news about COVID on a famous TV show, a medical friend in a WhatsApp group commented: “Yes, folks, the COVID has arrived.”


Months later, many new experiences in healthcare have arisen, most of them abruptly and without planning. These experiences culminated in a series of measures – most of them restrictive – and process adjustments that brought countless consequences, some negative, others more positive. Each consequence of the fight against COVID-19 has been a great source of learning for system improvement. Most notably, the ban on hospital visits (a measure totally necessary to contain the spread of the virus) has been coupled with a lack of information on the health status of patients and difficulty in engaging active and compassionate healthcare leadership in Brazil. This remains one of our biggest challenges. The lack of basic resources in the public health system, the waiting lists for a place in the ICU and a cooling fan, allied with the great political crisis that we are experiencing, modulated what was already frightening to a higher level – an unprecedented health crisis.


The story of my family friend, Mrs. Maria, who was hospitalized in a field hospital for 25 days illustrates these compound crises. Maria is 75 years old with melanoderma. She was admitted in early June with COVID-19 symptoms. After visiting a basic health unit, she was transferred to a specialized public hospital. After admission, her family was instructed about the restriction of visits and that all information about the patient’s status would be shared by the telephone registered by the family at the time of admission. The days passed, but no one heard from the patient herself or heard from the hospital about her health status or prognosis. Being elderly, which is a risk factor for more severe presentation of COVID-19, Mrs. Maria required even more care and attention. Eventually, the hospital social worker called without giving the family prior notice or making an appointment to talk to the family. The social worker gave a very poor description of important medical information and told the family she was reading directly from the medical report provided. As a health professional who works in intensive care units, I tried to advocate to ease the family's despair, although I was unable to visit Mrs. Maria myself.


I called the family and recorded their questions, astounded at what it must have been like for them to go more than a week without hearing from their mother or even knowing if her diagnosis of COVID-19 had been confirmed. I was shocked that Maria was still an inpatient without diagnostic confirmation, sharing space with patients whose COVID-19 diagnoses had already been confirmed. After much explanation, we managed to get a doctor to call the family and answer the family’s questions. It was amazing how much calmer the family became after the doctor's call. All they wanted was to have their rights as family caregivers protected – if visits and information were not possible in-person, their expectation was that the information they would ordinarily receive in-person would come through another channel. At a minimum, family access to basic information about a patient’s status should be guaranteed, regardless of social class. 


In Mrs. Maria’s case, one nurse truly made a difference by creating a valuable patient and family experience. Mrs. Maria’s daughter, Simone, called this nurse an angel because, through her own initiative, the nurse broke the rules and set up a video call between the patient and her family, which made the journey much easier for both. Understanding and seeing, albeit in a virtual way, that her mother was alive and well cared for gave Simone new strength to face the days to come. 


I was happy Mrs. Maria’s family had a chance to experience that instance of patient-centered care, but I confess that I was not surprised because I know so many sensational nurses who always demonstrate such compassion for their work. I later had the chance to speak to this nurse, and she reaffirmed my faith in the healthcare system with her mutual commitment to improve it. Mrs. Maria was discharged days later, and today she is doing well at home with her family, monitored on an outpatient basis. 


The angel nurse, Beatriz, broke the rules to infuse compassion into her role, and that had an immense impact on the family; she will always be remembered by Mrs. Maria’s loved ones.


Even in the face of a pandemic, we are not helpless to improve healthcare.


We, too, can identify vulnerabilities in our small universe and go beyond the care plan with the larger goal of system improvement. This should be our everyday mantra.  These are the lessons from Brazil and the Brazilian people: in the absence of support, we still have compassion. In the absence of a fair and equitable system, we have each other. 


Isabela Castro has served 7 years in the Brazilian Air Force as a Specialized Dentist and 10 years at United Health Group as a Specialized Dentist/Consultant for innovation and patient experience initiatives. Castro’s experience varies from public, private military hospitals and home care to healthcare operations and management. She’s been involved with quality improvementrisk management and innovation initiatives and is well versed in working within new cultures, matrixed leadership teams and takes pride in not accepting the status quo. Castro is anactivist with the worldwide movement What Matters to You? (WMTY). She serves on The Beryl Institute’s Global Patient and Family Advisory Board as well as on the Planetree International Patient and Family Partnership CouncilCastro also serves the Patient Centered Care Community of Practice at International Society for Quality in Health Care (ISQUa). Today she speaks on patient experience issues, blogs and consults in these roles.


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