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Behavior Profile of Family Members of Donors and Nondonors of Organs
Behavior Profile of Family Members of Donors and Nondonors of Organs B.N. Moraes, F. Bacal, M.C.T.V. Teixeira, A.I. Fiorelli, P.L. Leite, L.R. Fiorelli, N.A.G. Stolf, and E.A. Bocchi ABSTRACT Organ transplant shortage is a global problem caused by several factors, most of which are related to members of the family, who play a major role in the donation process. Objective. We sought to determine the most determinant features in the donor profile that relate to positive decisions versus refusal of donation. Material and Methods. Fifty-six families who were approached by the Organ Procurement Organization (OPO) from November 2004 to April 2006 agreed to participate in this work. To assess donor profiles, we used a structured interview. Results. Parental involvement directly in decisions about donation lead to significantly less frequent consent (P ⫽ .005), young donor age was associated with a reduced probability of donation (P ⫽ .002), violent death negatively influenced donation consent, excluding suicide (P ⫽ .004). Conclusion. The present study showed violent death, young patient age, and parental donation consent to be the most important factors that make it harder to obtain consent organ donation. When a collateral relative (sibling/uncle) or children were responsible for the donation decision, there was more success of consent.
T
HE SHORTAGE of organs for transplantation is a global problem caused by several factors. Most of the issues are related to family members who play a major role in the donation process.1–3 Currently, family refusal is the main factor limiting donation rates. It is responsible for the greater number of wait-listed patients relative to donated organs.4,5 However, donation decision making happens at a time of emotional instability caused by the news of death.5–7 In the face of these facts, the main objective of this study was to determine the features related to a positive decision or a refusal of donation. MATERIAL AND METHODS From November 2004 to April 2006, our Organ Procurement Organization (OPO) approached 243 next of kin of brain-dead patients to request organ donation. After a year, with respect for their mourning, 155 families were contacted by telephone and invited to participate in a structured interview, seeking to collect information about the family profile. A set of 56 families agreed to participate under a signed statement of free and informed consent, which was approved by the local ethics committee. All interviews were performed with the individual directly responsible for the decision about donation. Continuous variables, which were shown © 2009 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710 Transplantation Proceedings, 41, 799 – 801 (2009)
to display a normal distribution by the Kolmogorov–Smirnov test, were evaluated by the Student t test. Categorical variables were compared by the Fisher exact test and 2 analyses. Statistical significance was assumed for P ⬍ .05. All statistical analyses were performed using SPSS software for Windows version 13.0.
RESULTS
Among 56 family members who participated in the interview, 32 had agreed to donate. The profile of the families involved in the interview and the donor data are shown in Tables 1 and 2, respectively. This research observed that gender, ethnicity, education, income, and religion did not influence the donation process. Different variables were associated with the donation decision upon bivariate analysis: for example, older age of the potential donor (P ⫽ From the Heart Institute (InCor) of the University of Sao Paulo Medical School, Heart Transplantation Unit, Sao Paulo, Brazil. Supported by the CNPq and FAPESP. Address reprint requests to Av. Dr. Enéas de Carvalho Aguiar, Unidade de ICC e Tx, 44, 1°andar, bloco I, Cerqueira César, São Paulo SP CEP 05.403-900, Brazil; E-mail: bianca.nascimento@ incor.usp.br 0041-1345/09/$–see front matter doi:10.1016/j.transproceed.2009.02.043 799
800
MORAES, BACAL, TEIXEIRA ET AL
.002), brain death caused by disease (P ⫽ .004), and the relevant opinion and attitude in decision making was a collateral relative (sibling/uncle) or the son of the potential donor (P ⫽ .005). Upon multivariate analysis, only the potential donor’s age and relevant opinion in decision making emerged as positive significant variables correlated with donation consent. DISCUSSION
Various surveys have assessed people’s views on donation and analyzed the clinical and epidemiologic characteristics of the donors’ organs.2,8 However, family profiles and reasons leading to donation have still been poorly studied in the Brazilian culture. In this study, we observed that direct involvement of parents in the decision about donation was significantly less, probably related to their emotional relation. This characteristic is often seen in Latin cultures. This fact may influence the nonconcurrence of Latin Americans to presumed donation. According to Parkes,9 actually, Western society tends to form small, strongly linked family units, different from years ago. Generally, the loss of a parent is more bearable than the loss of a child. Various studies have indicated that the impact of the death of a child is greater than the death of parents or siblings. They have described the mourning for the loss of a child at any age to be more enduring with greater suffering.9,10 Shanfield et al10 have studied the reaction of parents who lost children, observing that this loss is more painful than that of a brother or parents. This study identified that a young aged potential donor was associated with a lower probability of donation. It is known that the difficulty in accepting the death of children Table 1. Potential Organs Donors’ Relatives Profile Approached by the OPO HC-FMUSP Donation of Organs Characteristics of the Family Participating in the Interview
Age (yrs) Female Ethnicity White African descendant Education (high school/university) Family income (US$) Catholic Knew someone who donated bodies Knew someone who received an organ transplant Knowledge of brain death Knowledge about donation of organs Parents participated in the interview Direct involvement of children and sibling
Yes (32)
No (24)
P
40.5 ⫾ 2.3 19 (59%)
42.5 ⫾ 1.8 13 (54%)
.523 .788
24 (75%) 8 (25%) 24 (75%)
17 (71%) 7 (29%) 12 (50%)
.768
746 ⫾ 129 18 (56%) 7 (22%)
768 ⫾ 171 17 (71%) 5 (21%)
.915 .581 1.000
15 (47%)
8 (33%)
.412
21 (66%) 23 (72%)
11 (46%) 14 (58%)
.177 .394
5 (16%)
11 (46%)
.018
18 (56%)
4 (18%)
.005
.090
Table 2. Potential Organs Donors Profiles Donation of Organs Characteristics of Potential Donor
Yes (32)
No (24)
P
Age (yrs) Female Ethnicity White African descendant Education (high school/university) Family income (US$) Catholic Violent death (except suicide) For the donation of organs
44.2 ⫾ 2.5 17 (53%)
31.3 ⫾ 3.2 15 (63%)
.002 .103
24 (75%) 8 (25%) 17 (53%)
17 (71%) 7 (29%) 11 (46%)
.768 .787
701 ⫾ 143 21 (66%) 5 (16%) 17 (53%)
740 ⫾ 174 16 (67%) 13 (54%) 6 (25%)
.866 .000 .004 .054
and young people is higher; however, there is controversy about it.5,7 This study observed that violent death was a variable that negatively affected consent for donation, excluding suicide. Traumatic deaths are more difficult to accept than “natural” deaths.9 As a matter of fact, the great family reluctance to donation consent should be exaggerated when there is a violent death. A reasonable explanation is that donation in suicide cases is a way to alleviate guilt concerning the terrible loss. Brain death knowledge is still low in our country. In the present study, we observed that the information was poorly understood, despite the experience and campaigns that seek to promote and explain brain death and organ donation. Knowledge about brain death in donor and nondonor families was 34% and 54%, and knowledge about organ donation was 28% and 42%, respectively. Gender, ethnicity, education, income, and religion are characteristics with similar behaviors in both family groups. They did not appear to influence the decision to donate the organs. In conclusion the present study showed that violent death, death of a young patient and the need for parent’s consent were the most important factors that impede the organ donation consent. When a collateral relative (sibling/ uncle) or children were responsible for the decision about donation, there is more success. New strategies in the field of donation should be developed, seeking to improve human and educational levels for coordinators of organ collection systems.
REFERENCES 1. Lock M, Crowley-Makota M: Situating the practice of organ donation in familial, cultural, and political context. Transplant Rev 22:154, 2008 2. Conesa CA, Rı´os A, Ramı´rez P, et al: Psychosocial profile in favor of organ donation. Transplant Proc 35:1276, 2003 3. Truog RD: Consent for organ donation— balancing conflicting ethical obligations. N Engl J Med 358:1209, 2008 4. Moraes EL, Barrose e Silva LB, Glezer M, et al: Trauma e doação de órgãos e tecidos para transplante. J Bras Transpl 9:561, 2006
FAMILY MEMBER BEHAVIOR PROFILE 5. Siminoff LA, Gordon N, Hewlett J, et al: Factors influencing families’ consent for donation of solid organs for transplantation. JAMA 286:71, 2001 6. Eckenrod EL: Psychological/emotional trauma of donor families. Transplant Proc 40:1061, 2008 7. Rodrigue JR, Cornell DL, Howard RJ: Organ donation decision: comparison of donor and nondonor families. Am J Transplant 6:190, 2006
801 8. Peron AL, Rodrigues AB, Leite DA, et al: Organ donation and transplantation in Brazil: University students’ awareness and opinions. Transplant Proc 36:811, 2004 9. Parkes CM: Luto: Estudo sobre a perda na vida adulta. São Paulo: Summus Editorial; 1998 10. Shanfield SB, Benjamin AH, Swain BJ: Parents’ reactions to the death of an adult child from cancer. Am J Psychiatry 141:1092, 1984
T
HE SHORTAGE of organs for transplantation is a global problem caused by several factors. Most of the issues are related to family members who play a major role in the donation process.1–3 Currently, family refusal is the main factor limiting donation rates. It is responsible for the greater number of wait-listed patients relative to donated organs.4,5 However, donation decision making happens at a time of emotional instability caused by the news of death.5–7 In the face of these facts, the main objective of this study was to determine the features related to a positive decision or a refusal of donation. MATERIAL AND METHODS From November 2004 to April 2006, our Organ Procurement Organization (OPO) approached 243 next of kin of brain-dead patients to request organ donation. After a year, with respect for their mourning, 155 families were contacted by telephone and invited to participate in a structured interview, seeking to collect information about the family profile. A set of 56 families agreed to participate under a signed statement of free and informed consent, which was approved by the local ethics committee. All interviews were performed with the individual directly responsible for the decision about donation. Continuous variables, which were shown © 2009 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710 Transplantation Proceedings, 41, 799 – 801 (2009)
to display a normal distribution by the Kolmogorov–Smirnov test, were evaluated by the Student t test. Categorical variables were compared by the Fisher exact test and 2 analyses. Statistical significance was assumed for P ⬍ .05. All statistical analyses were performed using SPSS software for Windows version 13.0.
RESULTS
Among 56 family members who participated in the interview, 32 had agreed to donate. The profile of the families involved in the interview and the donor data are shown in Tables 1 and 2, respectively. This research observed that gender, ethnicity, education, income, and religion did not influence the donation process. Different variables were associated with the donation decision upon bivariate analysis: for example, older age of the potential donor (P ⫽ From the Heart Institute (InCor) of the University of Sao Paulo Medical School, Heart Transplantation Unit, Sao Paulo, Brazil. Supported by the CNPq and FAPESP. Address reprint requests to Av. Dr. Enéas de Carvalho Aguiar, Unidade de ICC e Tx, 44, 1°andar, bloco I, Cerqueira César, São Paulo SP CEP 05.403-900, Brazil; E-mail: bianca.nascimento@ incor.usp.br 0041-1345/09/$–see front matter doi:10.1016/j.transproceed.2009.02.043 799
800
MORAES, BACAL, TEIXEIRA ET AL
.002), brain death caused by disease (P ⫽ .004), and the relevant opinion and attitude in decision making was a collateral relative (sibling/uncle) or the son of the potential donor (P ⫽ .005). Upon multivariate analysis, only the potential donor’s age and relevant opinion in decision making emerged as positive significant variables correlated with donation consent. DISCUSSION
Various surveys have assessed people’s views on donation and analyzed the clinical and epidemiologic characteristics of the donors’ organs.2,8 However, family profiles and reasons leading to donation have still been poorly studied in the Brazilian culture. In this study, we observed that direct involvement of parents in the decision about donation was significantly less, probably related to their emotional relation. This characteristic is often seen in Latin cultures. This fact may influence the nonconcurrence of Latin Americans to presumed donation. According to Parkes,9 actually, Western society tends to form small, strongly linked family units, different from years ago. Generally, the loss of a parent is more bearable than the loss of a child. Various studies have indicated that the impact of the death of a child is greater than the death of parents or siblings. They have described the mourning for the loss of a child at any age to be more enduring with greater suffering.9,10 Shanfield et al10 have studied the reaction of parents who lost children, observing that this loss is more painful than that of a brother or parents. This study identified that a young aged potential donor was associated with a lower probability of donation. It is known that the difficulty in accepting the death of children Table 1. Potential Organs Donors’ Relatives Profile Approached by the OPO HC-FMUSP Donation of Organs Characteristics of the Family Participating in the Interview
Age (yrs) Female Ethnicity White African descendant Education (high school/university) Family income (US$) Catholic Knew someone who donated bodies Knew someone who received an organ transplant Knowledge of brain death Knowledge about donation of organs Parents participated in the interview Direct involvement of children and sibling
Yes (32)
No (24)
P
40.5 ⫾ 2.3 19 (59%)
42.5 ⫾ 1.8 13 (54%)
.523 .788
24 (75%) 8 (25%) 24 (75%)
17 (71%) 7 (29%) 12 (50%)
.768
746 ⫾ 129 18 (56%) 7 (22%)
768 ⫾ 171 17 (71%) 5 (21%)
.915 .581 1.000
15 (47%)
8 (33%)
.412
21 (66%) 23 (72%)
11 (46%) 14 (58%)
.177 .394
5 (16%)
11 (46%)
.018
18 (56%)
4 (18%)
.005
.090
Table 2. Potential Organs Donors Profiles Donation of Organs Characteristics of Potential Donor
Yes (32)
No (24)
P
Age (yrs) Female Ethnicity White African descendant Education (high school/university) Family income (US$) Catholic Violent death (except suicide) For the donation of organs
44.2 ⫾ 2.5 17 (53%)
31.3 ⫾ 3.2 15 (63%)
.002 .103
24 (75%) 8 (25%) 17 (53%)
17 (71%) 7 (29%) 11 (46%)
.768 .787
701 ⫾ 143 21 (66%) 5 (16%) 17 (53%)
740 ⫾ 174 16 (67%) 13 (54%) 6 (25%)
.866 .000 .004 .054
and young people is higher; however, there is controversy about it.5,7 This study observed that violent death was a variable that negatively affected consent for donation, excluding suicide. Traumatic deaths are more difficult to accept than “natural” deaths.9 As a matter of fact, the great family reluctance to donation consent should be exaggerated when there is a violent death. A reasonable explanation is that donation in suicide cases is a way to alleviate guilt concerning the terrible loss. Brain death knowledge is still low in our country. In the present study, we observed that the information was poorly understood, despite the experience and campaigns that seek to promote and explain brain death and organ donation. Knowledge about brain death in donor and nondonor families was 34% and 54%, and knowledge about organ donation was 28% and 42%, respectively. Gender, ethnicity, education, income, and religion are characteristics with similar behaviors in both family groups. They did not appear to influence the decision to donate the organs. In conclusion the present study showed that violent death, death of a young patient and the need for parent’s consent were the most important factors that impede the organ donation consent. When a collateral relative (sibling/ uncle) or children were responsible for the decision about donation, there is more success. New strategies in the field of donation should be developed, seeking to improve human and educational levels for coordinators of organ collection systems.
REFERENCES 1. Lock M, Crowley-Makota M: Situating the practice of organ donation in familial, cultural, and political context. Transplant Rev 22:154, 2008 2. Conesa CA, Rı´os A, Ramı´rez P, et al: Psychosocial profile in favor of organ donation. Transplant Proc 35:1276, 2003 3. Truog RD: Consent for organ donation— balancing conflicting ethical obligations. N Engl J Med 358:1209, 2008 4. Moraes EL, Barrose e Silva LB, Glezer M, et al: Trauma e doação de órgãos e tecidos para transplante. J Bras Transpl 9:561, 2006
FAMILY MEMBER BEHAVIOR PROFILE 5. Siminoff LA, Gordon N, Hewlett J, et al: Factors influencing families’ consent for donation of solid organs for transplantation. JAMA 286:71, 2001 6. Eckenrod EL: Psychological/emotional trauma of donor families. Transplant Proc 40:1061, 2008 7. Rodrigue JR, Cornell DL, Howard RJ: Organ donation decision: comparison of donor and nondonor families. Am J Transplant 6:190, 2006
801 8. Peron AL, Rodrigues AB, Leite DA, et al: Organ donation and transplantation in Brazil: University students’ awareness and opinions. Transplant Proc 36:811, 2004 9. Parkes CM: Luto: Estudo sobre a perda na vida adulta. São Paulo: Summus Editorial; 1998 10. Shanfield SB, Benjamin AH, Swain BJ: Parents’ reactions to the death of an adult child from cancer. Am J Psychiatry 141:1092, 1984