MOTIVATIONS OF LIVING NON-RELATED DONORS IN KIDNEY TRANSPLANTATION

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MOTIVATIONS OF LIVING NON-RELATED DONORS IN KIDNEY TRANSPLANTATION Noel B. Camique, M.D., Rose Marie 0. Rosete-Liquete, M.D., Ma. Lourdes Chua-Garcia, M.D., Ma. Bernadette M. Arcena, M.D. St.

cadaver donors, poor access to cadaver program or less favored by recipients due to poor outcome and increase hospitalization cost.

1 MOTIVATIONS OF LIVING NON-RELATED DONORS IN KIDNEY TRANSPLANTATION Noel B. Camique, M.D., Rose Marie 0. Rosete-Liquete, M.D., Ma. Lourdes Chua-Garcia, M.D., Ma. Bernadette M. Arcena, M.D. St. Luke's Medical Center ABSTRACT Background: Living donor transplantation confers a better outcome for the recipient and is the preferred form of kidney transplantation by most patients due to lack of cadaver donors, poor access to cadaver program or less favored by recipients due to poor outcome and increase hospitalization cost. Several motives for kidney donation have been identified in earlier studies such as altruism, moral duty, religious beliefs, external pressures, guilt from past relationships, self benefit, improved self esteem, and identification with the recipient. Kidney transplantation in a developing country such as ours, with the commercialization of health services, where agents and vendors earn their livelihood thru organ selling made organ donation vulnerable to abuse. with our moral obligation at hand, a necessity to understand the psychological and social factors donors considers prior to facing kidney donation. Methods: The purpose of this research is to describe experiences and feelings of donors of nonrelated kidney transplantation at St. Luke's Medical Center to understanding the essence of non-related living donation in our setting. The conduct of interview by the psychiatrist was performed with a phenomelogical attitude making the rspondents express their experiences and deeper feelings. The central idea was openness and therefore the questions were not directed. After the interview, the psychiatrist provides the researcher a written report of the interview with her recommendations for the donor regarding kidney donation. The text was analyzed using a phenomelogical approach developed by Karlsson in The analysis results in therretical statements that respond to the research question and the statements are validated by direct quotations from the interviews. Address Reprint: Noel B. Camique, M.D. St. Luke's Medical Center E. Rodriguez Avenue Quezon City, Philippines Results: Motivation is a complex of subjective feelings. The five categories of motives found in this study were revealed in different combinations for each individual subjects. In majority of the cases, donors expressed their desire in helping others. To gain financial rewards from the act of giving was equally seen in each subject in this study. One case did donate out of gratitude and another as an act of sacrifice for his family by donating for another person. Financial gain has been the primary motivating factor among living non-related kidney donors at 87% (21 cases). Finances to sustain basic necessities of daily living of the family predominates at 37% (9 cases) followed by need to support educational needs of the children at 25% (6 cases). Four cases (16.7%) were unable to specify reasons for the need of monetary gain that suggest having no definite plans prior to transplantation. Conclusion: There is an evident social pressure for financial gain in the act of donation among living nonrelated organ donors. Though they are not literally being forced into donation, but the opportunity that lies before them for a chance to get "large" enough money to start a living is undeniable. INTRODUCTION Living donor transplantation confers a better outcome to the recipient and is the preferred source of donor by most patients due to lack of cadaver donors, or poor access to cadaver program with its associated poorer outcome and higher hospitalization cost. In the recent registry of the Philippine Society of Nephrology, there is a progressive increase in the rate of living non-related kidney transplantation, LNRD. Recruitment of the donor represents a medical and moral responsibility. This involves information about the risks and as well as exploration of motives for donation. Several motives for kidney donation have been identified in earlier studies such as altruism, moral duty, religious beliefs, external pressures, guilt from past relationships, self benefit, improved self esteem, and identification with the recipient.

2 MOTIVATIONS OF LIVING NON-RELATED DONORS IN KIDNEY TRANSPLANTATION Kidney transplantation in a developing country such as ours, coupled with the commercialization of health services, where agents and vendors earn their livelihood thru organ selling, made organ donation vulnerable to abuse. With our moral obligation at hand, a necessity to understand the psychological and social factors that donors consider prior to kidney donation. OBJECTIVE The aim of this study was to investigate the expressed deeper feelings of subjects, to comprehend their motivation and their decision-making process prior to kidney donation. DEFINITION OF TERMS 1. Living Related Donors - Following legal definition, this includes first degree consanguinity; however, considering the cultural and close kinship in our country, its meaning is expanded to include siblings, cousins, nephews, nieces and other blood relatives in this study. 2. Living Non-related Donors - they are not related to the recipient by blood but have the willingness and intention to donate a kidney based on certain reasons. 3. Motivation -expressed feeling of the donor for his reasons of donating. SUBJECTS All living non-related donors who pursued kidney donation from March 2004 to November 2004 at St. Luke's Medical Center. METHODS All donors of living non-related kidney transplantation were required to undergo pre-transplant psychiatric and psychosocial evaluation. Pre-transplant evaluation was conducted by a certified psychiatrist transcribed in a structured format covering the following spheres: Global assessment of function, social and economic status and motivation of donation. The conduct of interview by the psychiatrist lasted for no less than 30 minutes and was performed with a phenomenological attitude making the respondents express their experiences and deeper feelings. The central idea was openness and therefore the questions were not directed. The dialogue wandered towards family background, social and economic status, ideas and feelings of donation, the decision-making process and worries about short and long term risks. After the interview, the psychiatrist provides the researcher a written report of the interview with her recommendations for the donor regarding kidney donation. ANALYSIS The text was analyzed using a phenomenological approach developed by Karlsson in The phenomenological method includes five steps: (1) reading through the text several times with an open mind, (2) dividing the text into meaning units, (3) transforming each meaning unit into the researcher's language, (4) synthesizing the transformed meaning unit into "situated structures" presented in the form of an organized synopsis for each interview, and (5) condensing the text of all interviews into a general structure. Using this five-step method, different categories of content are identified. The analysis results in theoretical statements that responds to the research question and the statements are validated by direct quotations from the interviews. Table I. Age distribution 20, Total Range Mean = 28 years old RESULTS N = ile Majority of the donors were in their second decade of life with a mean age of 28 years. All of them were males and most of then were married, 15 (62.5%), two of them (8%) were separated. Table II. Civil Status distribution Civil Status Single Married Separated Total N = ile PHiliPPINE JOURNAL OF NEPHROLOGY VOL 20:2 65

Table Ill. Geographic distribution than PS,OOO.OO a month, an come which is even much lower than the minimum wage provided by law. Bacoor, Cavite 4.2 Batangas 3 12.5 Butuan City 4.

3%) of the donors came from Caloocan City and 6 (25%) were from by Montalban, Rizal Table V. Distribution as to the level of Educational Attainment Elementary Undergrad 5 20.8 Elementary Grad 8 33.

3 Table Ill. Geographic distribution than PS,OOO.OO a month, an come which is even much lower than the minimum wage provided by law. Bacoor, Cavite 4.2 Batangas Butuan City 4.2 Caloocan City Camarines Norte 4.2 Marikina 4.2 Metro Manila 4.2 Montalban Quezon City 4.2 Valenzuela 4.2 For the geographic distribution 8 (33.3%) of the donors came from Caloocan City and 6 (25%) were from by Montalban, Rizal Table V. Distribution as to the level of Educational Attainment Elementary Undergrad Elementary Grad High School Undergrad High School Grad Vocational Course All of the donors have attended formal education. Majority though, has not reached secondary education comprising 54% (13 cases). Table VI. Distribution as to employment status during Transplant Unemployed No permanent job Daily wage earner Professional 4.2 Table VII. Distribution as to average monthly Income Less than 5,000/mo ,000 to 10, More than 10, Table VI and V have shown that most of the donor have either no permanent jobs or daily wage earner less Table VIII. Distribution as t o number of household members Review of the family background showed that all donors came from large families with an average of 1 0 members in a household. Table IX. Factors Identified that motivate kidney donation Factor age (N=24) % Honorable acvgood deed Chance to share oneself/help others Chance to gain money to secure his future Sacrifice to help his family 4.2 Debt of gratitude 4.2 On review of the expressed feelings of the donors, several factors were identified as their reasons to donate. Top of the list was the desire to get monetary remuneration for the act of giving, but equally they have the spirit to help others as well in the same frequency of occurrence. Table X. Distribution as to the strongest motivating factor In decision-making process prior to kidney donation. Financial gain Help others Debt of gratitude 4.2 Financial gain has been the primary motivating factor among living non-related kidney donors as shown in Table X at 87% (21 cases) 66

4 MOTIVATIONS OF LIVING NON-RELATED DONORS IN KIDNEY TRANSP Table XI. Distribution of reasons for financial need of donors that motivated them to donate Support Children Unspecified Address family needs Medical need of a family member 4.2 Put up a business 4.2 Total Financial need motivates most of living non-related organ donors. As shown in Table XI, finances to sustain basic necessities of daily living of the family predominates at 37% (9cases) followed by need to support educational needs of the children at 25% (6cases). Four cases (16.7%) were unable to specify reasons for the need of monetary gain that suggest having no definite plans prior to transplantation. DISCUSSION Based on the Renal Transplant Registry, annual cases of kidney transplantation in the Philippines increased from 124 in 1996, to more than three folds in 2003 with 420 cases. Transplantation from cadaver donors is proportionately low while the rate of living kidney donation progressively increased through the years, with a ratio of 1:31 cases in 1999 to 1:59 cases in 2003 favoring living kidney donation. In 1999, transplantation from living non-related donors (LNRD) comprises 30% of living kidney donation. Starting 2 years ago, kidney transplantation from non-related living donors is much higher at 56% of cases in 2002 and 55% of cases in With the existing trend towards LNRD, issues relating to how are these donors motivated to donate needs to be evaluated. These concerns were addressed by this study. Although living kidney donation is an established procedure, few studies have dealt with how this is perceived by the donor. As criteria for becoming a donor have expanded, more distant relatives and even unrelated persons can become a donor. Many follow-up studies have shown that the short and long term medical risk involved in live-donor nephrectomy are small. Organ commerce is now common worldwide particularly in developing countries such as ours where cadaver donation programs are poorly developed. There is a frightening spectrum of fraud, coercion, and rampant commercialization associated with the practice of organ transplantation. We believe that the factors that motivate a person to donate their organ strongly correlate with the amount of risk they are willing to endure and their eventual psychosocial outcome. Thus the motivating factors of all potential living donors are assessed. Such assessment would help to select living donors motivated by the right reasons, rather than those forced to donate their organs because of emotional, financial, or social pressure. This process should reduce the psychosomatic morbidity of donors. The purpose of this research is to describe experiences and feelings as they are lived to reach an understanding of the essence of non-related living donation in our setting. This is conducted when the donor is already accepted for organ donation and interviews done prior to donating where impact of concerning factors would be stronger. All their motives to donate were studied in depth. Motivation is a complex of subjective feelings. The five categories of motives found in this study were revealed in different combinations for each individual subjects. In majority of the cases, donors expressed their desire to help others, a strong motive, often considered. But in the same manner, to gain financial rewards from the act of giving was equally seen in each subject in this study. A few would consider the act of donating to be honorable. One case did donate out of gratitude and another as an act of sacrifice for his family by donating for another person. But of these several motivating factors elicited, there is only one reason that leads them to the point where donation became the only option. The decision was based mainly on emotions and focused primarily on financial gain that goes with the act of donating. Most respondents did not weigh risks and benefits and see kidney donation as a means for a change in life and a chance for a better living. To site a few, one of the donors said, "I had experienced how it is to have very little to offer for my family, that I have to do something to uplift their condition". And another said, "I had the taste of poverty since I was young and this is the best opportunity I ever had to help my family financially ". Review of recommendations by the psychiatrist has shown that donors are less educated about the procedure with minimal idea of the risk they are taking. But they are very eager to donate with strong motivation for financial remuneration. It has been shown in this study that financial gain is the primary motivating factor in the decision making process to donate. PHILIPPINE JOURNAL OF NEPHROLOGY VOL 20:2 67

MOTIVATIONS OF LIVING NON-RELATED DONORS IN KIDNEY TRANSPLANTATION Yes indeed! There is an evident social pressure for financial gain in the act of donation among living nonrelated donors.

5 MOTIVATIONS OF LIVING NON-RELATED DONORS IN KIDNEY TRANSPLANTATION Yes indeed! There is an evident social pressure for financial gain in the act of donation among living nonrelated donors. Though they are not literally being forced into donation, but the opportunity that lies before them for a chance to get "large" enough money to start a living is undeniable. Whether this is a righteous motivation for organ donation is not the scope of this study. But in the midst of social crisis where the drive to survive predominates any standards of norm, where the demand to live in a manner that is acceptable to society, and where an act of compassion is "justly'' rewarded by a chance in life to better one's fate, who are we to judge. CONCLUSION All of the donors included in the study were males, majority are in their second decade of life with a mean age of 28 years. More than sixty percent were married. All of the donors have attended formal education but majority has not reached secondary education comprising 54% of cases. All donors came from large families with an average of 10 members in a household. Most have either no permanent jobs or daily wage earner receiving less than PS,OOO.OO a month which is much lower than the minimum wage provided by law. Several factors were identified as reasons to donate. Top of the list was the desire to get monetary remuneration for the act of giving. But equally, they have the spirit to help others as well. Financial gain has been the main motivating factor in the decision making process, primarily to sustain basic necessities of daily living of the family and to support educational needs of the children. RECOMMENDATION 1. Motivation of non-related living donors shall be compared to living related donors in a developing country so as to assess if they share motives of donating. 2. Psychiatric and psychosocial assessment should be conducted after a certain period after kidney donation, to assess psychosomatic problems brought about by the act of donation and how they will cope with unmet expectations. 3. Create qualifying factors as motivation for reasons of donating to have an objective basis in accepting donors into the program to lessen psychosomatic morbidity post kidney donation. BIBLIOGRAPHY 1. Lennerling, Annette, Forsberg, Anna, Nyberg, Gudrun; Becoming a living kidney donor; October 27, Fukunishi,l,et al.; Psychiatric problems in living-related transplantation(lll): Pretansplant Psychological Assessment in living-related transplantation.; Transplantation Proceedings, 34, (2002). 3. Lennerling, Annette, et al.; Motives for becoming a living kidney donor; Nephrology Dialysis Transplantation; Vol. 19 No. 6 (2004). 4. Lamanna, Mary Ann; Giving and getting: Altruism and exchange in transplantation.; Journal of Medical Humanities, Vol. 18, No. 3, (1997). 5. Karlsson G. Psychological qualitative research from a phenomenological perspective. Stochholm: Almqvist & Wiksell International, (1993). 68

Motives for becoming a living kidney donor

Nephrol Dial Transplant (24) 19: 16 165 DOI: 1.193/ndt/gfh138 Advance Access publication 5 March 24 Original Article Motives for becoming a living kidney donor Annette Lennerling 1, Anna Forsberg 2,Käthe