{"id":214533,"date":"2016-03-24T16:05:54","date_gmt":"2016-03-24T19:05:54","guid":{"rendered":"http:\/\/revistapesquisa.fapesp.br\/en\/?p=214533"},"modified":"2016-03-28T18:53:38","modified_gmt":"2016-03-28T21:53:38","slug":"organ-donation-the-art-of-giving-bad-news","status":"publish","type":"post","link":"https:\/\/revistapesquisa.fapesp.br\/en\/organ-donation-the-art-of-giving-bad-news\/","title":{"rendered":"Organ donation: The art of giving bad news"},"content":{"rendered":"

\"034-037_Doa\u00e7\u00e3o<\/a>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.\u00a0 In seven years, the rate of family refusals has doubled, jumping from 22% in 2008 to 44% in 2015 according to the\u00a0\u00a0 Brazilian Association of Organ Transplantation (ABTO).\u00a0 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.\u00a0 A study conducted by researchers at the Paulista School of Nursing of the Federal University of S\u00e3o Paulo (Unifesp) set out to identify the reasons for family refusals.\u00a0 The main reason identified by the study is that a significant portion of the families (21%) did not understand the concept of brain death.\u00a0 Another 19% attributed the decision to religious belief and 19% blamed it on a lack of technical expertise on the part of hospital staff.<\/p>\n

In all, 42 families were reported as having been consulted by Unifesp\u2019s Paulista School of Medicine\u2019s Organ Procurement Organization associated with the Hospital S\u00e3o Paulo, in 2010.\u00a0 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.<\/p>\n

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.\u00a0 \u201cPeople need time to assimilate the loss of a family member,\u201d says Bartira De Aguiar Roza, a professor at Unifesp and study coordinator.\u00a0 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.\u00a0 The study also indicated that from 1998 to 2012, nearly 21,000 families refused to donate organs.\u00a0 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.<\/p>\n

Roza recognizes that religious beliefs can also interfere in the decision.\u00a0 In one case of refusal, a woman said that she would not donate her mother\u2019s organs because she believed in resurrection.\u00a0 \u201cPersonal interpretation of religious texts can lead to an unfavorable attitude towards donation, although no religion is opposed to it,\u201d says Roza.\u00a0 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.\u00a0 This is so true that when questioned about changing one\u2019s mind, 70% of all family members responded that they would agree to the donation today.<\/p>\n

For another of the study\u2019s authors, Jo\u00e3o Luis Erbs Pessoa, technical director of the Transplant Center at the S\u00e3o 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.\u00a0 \u201cIt is the physicians and nurses, not the family members, who are supposed to understand brain death,\u201d says Pessoa.<\/p>\n

\"034-037_Doa\u00e7\u00e3o<\/a>There was a wide range of educational levels among family members who took part in the study:\u00a0 29% had completed elementary school, 33% high school, 36% were college graduates and 2% were PhDs.\u00a0 Most of the families (48%) reported income from one to three monthly minimum wages and 64% said that they were Catholic.\u00a0 \u201cThe 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.\u00a0 We often underestimate the family members, but they know when the interview process does not feel right,\u201d Pessoa explains.<\/p>\n

The study suggests that more should be invested in training the people who work to secure organ donations.\u00a0 In Santa Catarina, a state with one of the lowest rates of family refusal (see table<\/a>)<\/em> transplant coordinators in public hospitals go through a training course on communicating in critical situations, offered by the State Health Department.\u00a0 \u201cThe professionals learn how to speak compassionately to family members and make themselves available to answer any questions,\u201d says Joel de Andrade, Santa Catarina State transplant coordinator.<\/p>\n

Experiences like this have also been put into practice at Unifesp, at the Hospital das Cl\u00ednicas at the Universidade de S\u00e3o Paulo (HC-USP) and at the Hospital Israelita Albert Einstein, in the city of S\u00e3o Paulo.\u00a0 \u201cThe diagnosis of brain death is distressing and raises a number of questions.\u00a0 It is a death that does not look like death because the heart continues to beat.\u00a0 This causes the family to hold out hope for recovery,\u201d explains Juliana Gibello, a professor in the Albert Einstein hospital\u2019s program \u201cCommunicating Bad News,\u201d established in early 2015.\u00a0 With 30 class hours plus online resources, the course is geared towards physicians, nurses, psychologists and other health professionals.\u00a0 The units range from basic interpersonal communication skills to the processes involved in death and grieving. Students discuss clinical cases throughout the course. \u201cThis type of training and discussion should start at the undergraduate level in the various programs for health professionals,\u201d Gibello suggests.<\/p>\n

Brazil\u2019s initiatives look for inspiration to the Spanish organ donation model, which has become an international point of reference.\u00a0 The rate of family refusal in Spain is one of the lowest in the world at 17%.\u00a0 Part of its success is due to the way health professionals deal with families.\u00a0 \u201cRespect and empathy are at the heart of the issue,\u201d Carmen Segovia Gomez told Pesquisa FAPESP<\/em> magazine.\u00a0 She is one of the founders of the National Transplant Organization (ONT) established by the Spanish government in 1989.\u00a0 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.\u00a0 The organization was the first in the world to establish this type of training for health professionals.<\/p>\n

\u201cThis specific training allows professionals to develop communication skills to make a grieving family feel comfortable and confident about making its decision,\u201d says Gomez who is currently managing the program at the ONT.\u00a0 At one stage of the course, students interact with actors who play the role of family members receiving the news of brain death.\u00a0 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.\u00a0 In the Spanish province of Alicante, this type of approach completely eliminated refusals during the 1990s.\u00a0 In recent years, Gomez has also collaborated as a consultant on some documentaries by filmmaker Pedro Almod\u00f3var, 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\u2019s founder.<\/p>\n

\"Arrival

Venilton Kulcher<\/span>Arrival of organs for transplantation at a hospital in the state of Paran\u00e1Venilton Kulcher<\/span><\/p><\/div>\n

Although Spain\u2019s priority lies in promoting good communication practices among health professionals, it also invests in awareness campaigns.\u00a0 Marcelo Jos\u00e9 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.\u00a0 According to him, in Spain, organ donation is a topic presented to children and teens in educational programs starting in elementary school.\u00a0 \u201cIn Brazil, we still have a lot of work to do in this regard.\u00a0 It\u2019s not enough to just invest in training health professionals,\u201d he cautions.\u00a0 \u201cHere in Brazil, people still confuse brain death with someone being in a coma, for example,\u201d says Santos, who is now doing post-doc work on the subject.\u00a0 His partial findings indicate that family refusal is even higher in relation to authorization to donate tissue, skin and corneas.\u00a0 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.<\/p>\n

The United States and the United Kingdom have also started to invest in campaigns.\u00a0 Efforts in the U.S. have contributed to the increase in the number of donors.\u00a0 Currently more than 100 million Americans, just under one third of the population, say that they are organ donors.\u00a0 Despite this, the government remains concerned about family refusal, which currently stands at about 22% nationwide.<\/p>\n

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.\u00a0 One strategy adopted by the U.S. government was to educate people through the website Organ Donor<\/a>, social networks, and radio and television campaigns.\u00a0 Researchers are also invited to take part in publicizing information about procedures related to donation.<\/p>\n

The United Kingdom currently has a refusal rate of 42%, one of the highest in Europe.\u00a0 In 2014, the number of donations fell for the first time in 11 years.\u00a0 According to a survey conducted by the National Health Service (NHS), Great Britain\u2019s public health service, 16.9 million people \u2013 nearly one third of all adults in the U.K. \u2013 admit that they have never considered the possibility of becoming an organ donor.\u00a0 Another four million say they are donors but have not notified their family members of the fact.\u00a0 In an attempt to turn this around, the British government has created a website with information about the organ donation process<\/a>.<\/p>\n

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.\u00a0 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.\u00a0 After the scandal was revealed, the number of organ donations in Germany fell 20%.<\/p>\n

Roza recalls that Brazil encountered a similar situation when a change in legislation resulted in a drastic drop in the number of donations.\u00a0 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.\u00a0 The effect was just the opposite of what was intended.\u00a0 In Brazil\u2019s Northeast, most individuals declared themselves non-donors when they received or renewed their documents.\u00a0 \u201cPeople were afraid they might not be properly cared for if they went to the hospital,\u201d says Roza.\u00a0 In 1998, a temporary measure instituted family authorization in cases of absence of specification on Brazilian drivers licenses or identification documents.\u00a0 It was only in 2001 that the notion of informed consent by the family was added to the law.\u00a0 For the researcher, any change in legislation could determine the success or failure of Brazil\u2019s organ donation policy.\u00a0 \u201cStrategies need to be in harmony with society\u2019s cultural and ethical context,\u201d Roza says.<\/p>\n

Project<\/strong>
\nEvaluation of the causes of family refusal for organ and tissue donation (n\u00ba 2012\/05348-2<\/a>); Support Type: <\/strong>Regular Research Awards; Principal Investigator:<\/strong> Bartira De Aguiar Roza (Unifesp); Investment:<\/strong> R$10,382.80.<\/p>\n","protected":false},"excerpt":{"rendered":"Increase in the number of Brazilian family refusals on organ donation","protected":false},"author":421,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[166],"tags":[247,256],"coauthors":[740],"class_list":["post-214533","post","type-post","status-publish","format-standard","hentry","category-policies-st-en","tag-medicine","tag-public-policies"],"acf":[],"_links":{"self":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts\/214533","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/users\/421"}],"replies":[{"embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/comments?post=214533"}],"version-history":[{"count":0,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/posts\/214533\/revisions"}],"wp:attachment":[{"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/media?parent=214533"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/categories?post=214533"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/tags?post=214533"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/revistapesquisa.fapesp.br\/en\/wp-json\/wp\/v2\/coauthors?post=214533"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}