Family members’ refusal to donate organs halts resumption of transplants

When Marcia Rebelo, 53, opened the results of her son’s routine exams in January 2020, she was shocked. Blood creatinine levels were at 7.7 mg/dL. Normal for a healthy adult is 1.3mg/dL. The number indicated that he was close to losing kidney function. That day, she began a race against time.

Thiago Rebelo, 35, has been a kidney patient since childhood, when he lost the function of one kidney. He is also autistic and has other disabilities, which make him ineligible for dialysis.

In February of that year, he managed to get in line to receive a new kidney, but the following week, the numbers of coronavirus cases in the country increased, and elective surgeries were practically interrupted.

Anguished, the family, who are from Santos (SP), waited for months for the arrival of an organ while Thiago got worse. During the pandemic, there was a reduction in the number of transplants in Brazil.

Only this year the number rose again, still timidly. According to information compiled by Abto (Brazilian Association of Organ Transplants), there were 12,100 procedures from January to June, an increase of 17% compared to the same period in 2021, when 10,300 were performed. The number includes organ transplant, cornea (which is a tissue) and marrow (a cell).

The country is still far from the pre-pandemic 2019 numbers. In the first half of that year there were 13,000 transplants. Thiago waited for two months and even had a total loss of function in his only working kidney while he was in line.

Doctors insisted on trying dialysis as a last resort. Marcia says that she was packing her bags for her son to be hospitalized when she received a call from Hospital do Rim, in São Paulo. A family from Fortaleza (CE) would donate the organ of a relative who had died. Thanks to that, Thiago is now recovered.

Ilka Boin, secretary of Abto, says that the family members’ refusal to donate the relatives’ organs is an obstacle in the recovery of the indicators.

According to data compiled by the association, between 2021 and 2022, the denial of family members grew by four percentage points, reaching 44% (1,608) of the interviews carried out. One of the reasons for the growth may be the policy of isolation between patients and family members adopted by hospitals in the pandemic.

According to Joel de Andrade, transplant coordinator for the state of Santa Catarina, participating in the treatment increases the patient’s family’s confidence in the medical team.

The state is among Brazil’s leaders in transplants. In the first half of the year, 37.9 per million inhabitants were carried out, second only to Paraná, with 39.7. The doctor says that resuming the training of organ harvesting personnel was essential for Santa Catarina to reach the current numbers.

In 2007, in the state, the refusal rate of family members was 70%. In 2010, the course on communicating news in critical situations for health professionals was implemented, in partnership with Spain, a model country in the management of transplants.

Andrade says that empathic communication is essential to generate a good impression on family members, who are in a sensitive moment. If not practiced, it generates distrust of the medical team and the feeling of neglect leads to denial.

Since then, the refusal has been decreasing. In 2019, it reached 26%, against 40% in the rest of the country, and Santa Catarina hit the mark of 44.1 surgeries per million inhabitants. Nationwide, kidneys were the most received organs this year, 2,381 — 350 more than in the same period last year, but still 20% less than in 2019.

Liver (1,007), lung (45) and heart (176) also had a small increase in the number of transplants, still without reaching pre-pandemic figures. Corneal ones are among the most impacted. In the first half of 2019, 7,112 surgeries were performed, against 6,690 in the same period in 2022. Despite this, the number represents an increase of 19.5% compared to last year.

Hercules Ferrari, 58, received a liver in the pandemic. A university professor in Itu (SP), he was hospitalized with fulminant hepatitis in January last year. Doctors tried clinical treatment for four months before opting for a transplant.

The condition was serious, and a donor was found within four days. In Brazil, the queue is organized according to the severity of the patient, and urgent cases are prioritized. After the surgery, the recovery was slow, but the treatment worked.

“I was graced. It was not easy to assimilate the news [da doença], but I stared straight ahead. Giving is an extreme act of love,” she says.

For the second half, the expectation is that the numbers will improve. Brazil has approved the donation of organs from patients who test positive for Covid-19, provided they have been asymptomatic for ten days. Cured for ten days are also eligible. The protocol is the same in the US and Europe.

The measure aims to alleviate the dammed queue of about 51,000 people waiting for a transplant. Most need a kidney (56.4%) and cornea (39.5%). The SUS performs about 90% of transplants in Brazil. The country is third in absolute numbers of these procedures, behind the USA and China.