The number of families that do not authorize donation of organs or tissue from family members diagnosed as brain dead has increased significantly in Brazil. In seven years, the rate of family refusals has doubled, jumping from 22% in 2008 to 44% in 2015 according to the Brazilian Association of Organ Transplantation (ABTO). Countries like Australia and the United Kingdom are facing similar situations which, when combined with the failure in identifying and notifying potential donors, makes transplantations difficult. A study conducted by researchers at the Paulista School of Nursing of the Federal University of São Paulo (Unifesp) set out to identify the reasons for family refusals. The main reason identified by the study is that a significant portion of the families (21%) did not understand the concept of brain death. Another 19% attributed the decision to religious belief and 19% blamed it on a lack of technical expertise on the part of hospital staff.
In all, 42 families were reported as having been consulted by Unifesp’s Paulista School of Medicine’s Organ Procurement Organization associated with the Hospital São Paulo, in 2010. The most important conclusion was that, despite the lack of technical knowledge surrounding brain death, the chances of the family agreeing to possible donation are directly proportional to the ability of health professions to establish empathy during the interview in which family members are asked for authorization.
One piece of information that surprised the researchers was that approximately 43% of the families did not believe that they had been given enough time to make the decision. It is true that time is of the essence in obtaining authorization because organs such as the heart and liver can no longer be used once the heart stops beating. But families claim that the approach was too mechanical, almost truculent, and did not respect the shock of someone who had just received tragic news. “People need time to assimilate the loss of a family member,” says Bartira De Aguiar Roza, a professor at Unifesp and study coordinator. She says that the problem lies in the fact that many physicians and nurses are not prepared to communicate bad news in a clear and respectful way. The study also indicated that from 1998 to 2012, nearly 21,000 families refused to donate organs. If 80% of them had agreed to donate, assuming the possibility of extracting at least four organs from every donor, more than 67,000 patients would have benefited from transplants during that period.
Roza recognizes that religious beliefs can also interfere in the decision. In one case of refusal, a woman said that she would not donate her mother’s organs because she believed in resurrection. “Personal interpretation of religious texts can lead to an unfavorable attitude towards donation, although no religion is opposed to it,” says Roza. But even in those cases, the researcher believes the fault does not lie entirely with the family; the way health professionals suggest donations can make all the difference. This is so true that when questioned about changing one’s mind, 70% of all family members responded that they would agree to the donation today.
For another of the study’s authors, João Luis Erbs Pessoa, technical director of the Transplant Center at the São Paulo State Department of Health, one of the main duties of professionals who handle organ donations should be to answer all questions from family members. “It is the physicians and nurses, not the family members, who are supposed to understand brain death,” says Pessoa.
There was a wide range of educational levels among family members who took part in the study: 29% had completed elementary school, 33% high school, 36% were college graduates and 2% were PhDs. Most of the families (48%) reported income from one to three monthly minimum wages and 64% said that they were Catholic. “The study shows that what is at stake is not whether people are familiar with the concept of brain death, but whether people are treated well by health professionals. We often underestimate the family members, but they know when the interview process does not feel right,” Pessoa explains.
The study suggests that more should be invested in training the people who work to secure organ donations. In Santa Catarina, a state with one of the lowest rates of family refusal (see table) transplant coordinators in public hospitals go through a training course on communicating in critical situations, offered by the State Health Department. “The professionals learn how to speak compassionately to family members and make themselves available to answer any questions,” says Joel de Andrade, Santa Catarina State transplant coordinator.
Experiences like this have also been put into practice at Unifesp, at the Hospital das Clínicas at the Universidade de São Paulo (HC-USP) and at the Hospital Israelita Albert Einstein, in the city of São Paulo. “The diagnosis of brain death is distressing and raises a number of questions. It is a death that does not look like death because the heart continues to beat. This causes the family to hold out hope for recovery,” explains Juliana Gibello, a professor in the Albert Einstein hospital’s program “Communicating Bad News,” established in early 2015. With 30 class hours plus online resources, the course is geared towards physicians, nurses, psychologists and other health professionals. The units range from basic interpersonal communication skills to the processes involved in death and grieving. Students discuss clinical cases throughout the course. “This type of training and discussion should start at the undergraduate level in the various programs for health professionals,” Gibello suggests.
Brazil’s initiatives look for inspiration to the Spanish organ donation model, which has become an international point of reference. The rate of family refusal in Spain is one of the lowest in the world at 17%. Part of its success is due to the way health professionals deal with families. “Respect and empathy are at the heart of the issue,” Carmen Segovia Gomez told Pesquisa FAPESP magazine. She is one of the founders of the National Transplant Organization (ONT) established by the Spanish government in 1989. In addition to providing national coordination of the effort to secure organs for transplantation, ONT is also involved in organizing courses on communicating bad news. The organization was the first in the world to establish this type of training for health professionals.
“This specific training allows professionals to develop communication skills to make a grieving family feel comfortable and confident about making its decision,” says Gomez who is currently managing the program at the ONT. At one stage of the course, students interact with actors who play the role of family members receiving the news of brain death. In the simulation, the students are told to take a sensitive approach, asking first about the life of the family member and what he or she had liked, so that they could then introduce the possibility of authorizing the donation. In the Spanish province of Alicante, this type of approach completely eliminated refusals during the 1990s. In recent years, Gomez has also collaborated as a consultant on some documentaries by filmmaker Pedro Almodóvar, such as All about my mother (1998), in which the character of a nurse who works as a hospital transplant coordinator was inspired by the work of ONT’s founder.
Although Spain’s priority lies in promoting good communication practices among health professionals, it also invests in awareness campaigns. Marcelo José dos Santos, a researcher at the USP School of Nursing, took part in the ONT course as a student, during a 2001 trip to Spain. According to him, in Spain, organ donation is a topic presented to children and teens in educational programs starting in elementary school. “In Brazil, we still have a lot of work to do in this regard. It’s not enough to just invest in training health professionals,” he cautions. “Here in Brazil, people still confuse brain death with someone being in a coma, for example,” says Santos, who is now doing post-doc work on the subject. His partial findings indicate that family refusal is even higher in relation to authorization to donate tissue, skin and corneas. One clue to explaining the rejection could be that families are uninformed about the possibility of this type of donation or averse to the notion that the body of their loved ones might somehow be mutilated.
The United States and the United Kingdom have also started to invest in campaigns. Efforts in the U.S. have contributed to the increase in the number of donors. Currently more than 100 million Americans, just under one third of the population, say that they are organ donors. Despite this, the government remains concerned about family refusal, which currently stands at about 22% nationwide.
A study conducted by the U.S. Organ Procurement and Transplantation Network (OPTN) has shown that the reasons that cause family members to refuse to donate organs are the same as those found in other countries. One strategy adopted by the U.S. government was to educate people through the website Organ Donor, social networks, and radio and television campaigns. Researchers are also invited to take part in publicizing information about procedures related to donation.
The United Kingdom currently has a refusal rate of 42%, one of the highest in Europe. In 2014, the number of donations fell for the first time in 11 years. According to a survey conducted by the National Health Service (NHS), Great Britain’s public health service, 16.9 million people – nearly one third of all adults in the U.K. – admit that they have never considered the possibility of becoming an organ donor. Another four million say they are donors but have not notified their family members of the fact. In an attempt to turn this around, the British government has created a website with information about the organ donation process.
According to Bartira Roza, one possible reason to explain the increase in family member refusal in some European countries is the negative repercussion from a 2013 German episode. At the time, it was discovered that the doctor who headed up the transplantation department of the Gottingen University Hospital manipulated the transplant waiting list, altering the medical data of patients awaiting transplants. After the scandal was revealed, the number of organ donations in Germany fell 20%.
Roza recalls that Brazil encountered a similar situation when a change in legislation resulted in a drastic drop in the number of donations. In 1997, Brazil instituted a policy of presumed consent in organ donation, which meant that all citizens would be considered organ donors unless they stated otherwise on their identification document. The effect was just the opposite of what was intended. In Brazil’s Northeast, most individuals declared themselves non-donors when they received or renewed their documents. “People were afraid they might not be properly cared for if they went to the hospital,” says Roza. In 1998, a temporary measure instituted family authorization in cases of absence of specification on Brazilian drivers licenses or identification documents. It was only in 2001 that the notion of informed consent by the family was added to the law. For the researcher, any change in legislation could determine the success or failure of Brazil’s organ donation policy. “Strategies need to be in harmony with society’s cultural and ethical context,” Roza says.
Evaluation of the causes of family refusal for organ and tissue donation (nº 2012/05348-2); Support Type: Regular Research Awards; Principal Investigator: Bartira De Aguiar Roza (Unifesp); Investment: R$10,382.80.