© 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Clin Transplant 2014: 28: 192–197 DOI: 10.1111/ctr.12296
Clinical Transplantation
Improving the potential for organ donation in an inner city Muslim American community: the impact of a religious educational intervention Hafzalah M, Azzam R, Testa G, Hoehn KS. Improving the potential for organ donation in an inner city Muslim American community: the impact of a religious educational intervention.
Mina Hafzalaha, Ruba Azzamb, Giuliano Testac and K. Sarah Hoehnd a
Abstract: Objective: We aimed to assess the willingness of Muslim Americans to be potential organ donors, to describe potential religious barriers to organ donation, and to evaluate the efficacy of a brief religious educational intervention. Methods: Face-to-face survey with English-, Arabic-, and Urduspeaking Muslim American adults in places of worship and gatherings. The two-part survey included questions about demographics and organ donation. A brief educational intervention followed, which included an explanation of organ donation, along with the evidence for Islam’s support for organ donation. After this intervention, the questions about organ donation and brain death were repeated. Results: The response rate was 81% (231 of 285). Fifty percent of the respondents would donate their organs. Twenty-five percent changed their opinion and accepted the idea of being donors after the educational intervention. Lack of awareness of the support of Islam to organ donation and fear of disfigurement were the most common barriers cited. Conclusion: Muslim Americans are less likely than Caucasian Americans to be organ donors, and the perceived lack of support from Islam for organ donation is a factor. The effectiveness of our brief religious education intervention suggests that further education may improve organ donation rates among the Muslim community.
Organ transplantation is the treatment for end organ failure worldwide, yet there are not enough organs to meet the needs (http://www.unos.org/ as of September 2013). In the United States, the Muslim community is a growing minority, yet one that is difficult to track epidemiologically (1). The Muslim community is a racially diverse one with many Muslims originally from the Middle East hence Arabic-speaking. The donation rate among Muslim Americans in the USA is lower than other religious and ethnic groups (2–7). This is true of both solid organ transplants and bone marrow transplants. This low rate has been attributed to religious reasons, specifically the perceived barrier that Islam does not support organ donation (http:// optn.transplant.hrsa.gov/) (8–10). In fact, the maintenance of human life is one of the ultimate goals of Islamic legislation: “Whosoever saves the
192
Children’s Acute Care, Sioux Falls, SD, University of Chicago, Chicago, IL, cBaylor Health System, Dallas, TX, and dUniversity of Kansas Medical Center, Kansas City, KS, USA
b
Key words: Arab American – education – ethics – muslim – religion Corresponding author: K. Sarah Hoehn, MD, MBe, 3901 Rainbow Boulevard, Kansas City, KS 66160, USA. Tel.: 913 588 6324; fax: 913 588 6313; e-mail: [email protected] Conflict of interest: None. Accepted for publication 8 November 2013
life of one person it would be as if he saved the life of all mankind.” (Holy Qur’an, Surat Al-Maeda v 32). The permissibility of organ transplantation and donation has been officially endorsed by Islamic teachings and decrees. This is clearly stated in many religious leaders’ decrees since as early as in 1959 (reference is: Islamic view of Transplantation by Y.I.M. Et-Shahat in Transplantation Proceedings 1999). One of the most well-published is the resolution of the Supreme Council of Ulama in Saudi Arabia that was passed in 1982. The Senior Ulama council heads the religious authority in Saudi Arabia and is composed of 40 of Saudi’s most senior Muslim scholars. Its job is to provide decrees or decisions or juristic ruling concerning Islamic law based on Islamic laws from The Holy Quran and the teachings of Prophet Mohammed (Peace be upon him, PBUH) (the Sunnah). The purport specifically mentioned that the board
Education to improve Muslim donation rates unanimously resolved the permissibility to remove an organ or part thereof from a dead person for the benefit of another should the need arise, should the removal cause no dissatisfaction, and should the transplantation seem likely successful (http:// www.scot.org.sa/islamic-fatwas.html and http:// www.isna.net/Leadership/pages/Islamic-MedicalEthics.aspx) (11, 12). For people in the United States, Islamic society of North America (ISNA) (11) is a resource that could be readily available to chaplains who work with Muslim families in the hospitals as well as to the multiple mosques and Islamic schools in the area. ISNA is an umbrella organization that was founded in 1982 whose goal is to work for the betterment of the Muslim community. It provides a common platform to help support Muslim communities and also develop educational and social programs as well as reach out to other religious and civic organizations and foster good relationships between these groups and the Muslim community. ISNA endorses the same decrees supporting permissibility of organ transplantation. The goals of our project were to describe the barriers that prevent Muslim Americans from being organ donors and to increase awareness of the Muslim public about organ donation and its benefits. The ultimate goal is to help increase the donor pool in the state of Illinois. Our first hypothesis was that Muslim Americans are less likely to be organ donors for lack of understanding the religious position on organ donation and transplantation. The second was that those who refuse to be organ donors would nonetheless accept to be organ recipients. The third was that our short intervention elucidating Islam’s support for organ donation would increase willingness to be a donor. Methods and intervention
The University of Chicago institutional review board granted an exemption from review for the conduct of this study as it was an anonymous field survey. The interviews were conducted face to face with Muslim Americans from three groups: scholars, medical professionals (physicians), and general population. The surveys were administered in mosques, schools, gatherings, at a social services office, and on the University of Chicago campus between November 2008 and November 2009. These locations were based on where one could find a generous representative of Muslim Arab Americans based on discussion with other Muslim Arab Americans. The subjects were English-, Arabic-, or Urdu-speaking Muslim Americans older than 18 yr of age. The study was carried out in these
languages based on the languages of the investigators. The survey questions were presented by two bilingual physicians, one in an Arabic and English, and one in Urdu and English. The survey was also presented by an Arabic- and English-speaking bilingual aid from the Social Services office where many of these interviews were conducted in the presence of the bilingual physician to aid in answering questions and in going through the educational intervention. The survey was composed of two parts (Tables 1 and 2). The first part included questions related to demographics, religiosity (based on compliance with the performance of the daily prayers), country Table 1. Questionnaire Aa Age Sex Level of education Marital status Do you pray every day? Country of origin Years in the USA Do you have a driver’s license? Do you consider yourself a healthy individual? Would you consider being an organ donor? I understand the term brain death to mean: A. Being unable to move or breathe with permanent and unrecoverable loss of all brain function B. Being in a permanent state where I am able to breathe but unable to eat or interact with the environment C. Having a temporary brain injury or being in a comatose state from which recovery may or may not occur D. None of the above Permanent loss of all brainstem function which causes permanent brain failure (in other words brain death) is legally considered death in the USA; do you agree with this definition? Would you want mechanical support (i.e., breathing machine) withdrawn if you were not going to survive? Would your family be supportive of your decision to be an organ donor? Do you know about the various organ donation programs in the Muslim world? Do you personally know of an individual – close relative or friend or member of your community – who has received an organ donation? Do you personally know of an individual – close relative or friend or member of your community – who is listed on the organ/tissue donor registry or voiced interest in being a donor? Do you personally know of an individual – close relative or friend or member of your community – who has been an organ donor? Who would influence you most in how you think about being an organ donor? Check all that would apply:
• • • • a
Myself and my own readings in religion Family members and friends Local religious figures Muslim authorities from my country of origin or any other country
Questionnaire A response choices were yes, no and unsure.
193
Hafzalah et al. Table 2. Questions from questionnaire Ba Would you donate your organs? Would you receive an organ donation? Which of the following contributed to your decision to donate?
• • • •
I have been involved personally in a situation where a loved one would have still been alive if they had received an organ transplant I have been involved personally with a loved one receiving an organ donation I have always wanted to be involved in a great deed This program has helped me gain insight into how vital it is to be involved in people’s lives even after my death
Which of the following contributed to your decision NOT to donate? Check all that apply:
• • • • • •
Because of biases against my ethnic background and religion, I distrust the medical system I would be afraid that they would take my organs even before death I don’t want my body to be disfigured I don’t believe that organ transplantation is a good treatment modality I would not want to receive an organ transplant if my life depended on it, and would rather die I still need the local imam of the mosque in the society that I belong to, to support organ donation and the legal definition of brain death
If there could be one reason to persuade you to be a donor what would it be? a
Questionnaire B responses taken after brief educational intervention.
of origin, and length of residency in the USA. Other questions addressed knowledge of organ donation in the Muslim world, in addition to understanding the concept of brain death and its legality, organ donation after brain death, and any relevant experience with transplantation. The second part of the survey was conducted after the educational intervention had been delivered (30 min). It entailed repeating the questions about willingness to be an organ donor checking for changes in their stands. The second part of the survey was conducted as soon as the teaching session ended. We tried to elucidate the participants’ reasoning as to their refusal or agreement to be organ donors and presented multiple options in the questionnaire that they were able to choose as many as were applicable. Our intervention was a brief (61 yr 26 Level of religiosity, p = 0.18a Pray 5a day 146 Sometimes 39 None 31 Years in the USA, p = 0.84a 20 103 Sex, p = 0.07 Male 118 Female 112 Healthy, p = 0.24 Yes 206 No 33 Income, p = 0.018a 80 000 10 Understand the term brain death, p = 0.18 Yes 138 No 83 Accept brain death as legal death, p = 0.001 Yes 155 No 74 Marital status, p = 0.04 Single 44 Married 172 Divorced/widowed 14 Education, p = 0.34 No answer/≤high school 88 Undergraduate 43 Graduate/post-graduate 63 Medical professional, p = 0.013 24 Muslim scholars, p = 0.44 13 Driver’s license, p = 0.42 Yes 198 No 33
% of willing to donate
55 53 44 58
Donate intervention
Post-educational
Donate pre intervention
Yes
No
Unsure
Yes No Unsure
94% 11% 13.8%
2% 60.5% 24.2%
4% 28.5% 62%
49 56 61 52 48 52 57 45 52 40 73 51 43 50 55 46 61 31 68 47 50 44 46 53 75 62 50 57
a
Wilcoxon rank-sum test. Bold indicates statistical significance.
choose any option that pertained to their rationale. The choices included their own readings, as well as needing a religious figure to support donation. In the majority of cases, the respondents in favor of donation cited their own readings (67%) and performing a good deed (40%) as the influencing factors. Factors to influence the decision not to donate included needing a religious figure to support donation (40%), disfigurement (33%), and distrust of the medical system (8%) (Table 5). Seventeen percent voiced their willingness to be recipients but were adamantly against being cadaveric organ donors. Discussion
In our pilot study, we did find that the Muslim Arab Americans who participated in our study were less likely to agree to be organ donors than the general population. In addition, we confirmed our hypothesis that Islam played a role in their unwillingness to be donors, despite their willingness to accept organs. Most importantly, we found that a brief educational intervention sharing the decrees from Islam that support organ donation increased the willingness of our participants to consider being organ donors. This increase in willingness to consider organ donation highlights the role of religious education in this population. Table 5. Influences on donationa
conversion rate was 14% (4 of 29) for the group that was unsure initially and 11% (9 of 81) for the group that refused donation initially prior to our intervention (p = 0.26). Although this was not statistically significant, it does demonstrate an ability to change their willingness to donate via education. Our analysis was a comparison of pre- and post hoc comparisons, using Fisher’s exact t test (Table 4). In terms of which factors influenced their decision-making in regard to donation, participants were given a list of choices and they were able to
Influences to donate
N
%
Own reading
145
67
Great deed Family
73 47
44 22
Local figure Authority elsewhere
43 19
20 9
a
Influences not to donate Need local religious figure to support Disfigurement Take organ prior to death Rather die Medical system distrust
N
%
32
40
26 9
33 11
8 6
10 8
Participants were able to choose multiple options.
195
Hafzalah et al.
The disparity between need for organs and available organs continues to grow, and this is particularly true in the Muslim American population. Recent literature confirms the lack of available organs, especially from minority populations (2, 3). Current data from United Network for Organ Sharing (UNOS) indicate that there are 119 482 patients listed for transplantation (http://www. unos.org/ as of September 2013). This is in contrast to actual number of transplants performed, 11 580 as of January 2013. On average, 18 people die per day while awaiting an organ transplant (http:// optn.transplant.hrsa.gov/). Average waiting time for transplantation varies by age and indication from weeks to years depending on the organ and blood type (http://optn.transplant.hrsa.gov/). There is unwillingness to become an organ donor for a multitude of reasons. Lack of adequate education is an important factor restricting the growth of the donor pool size of available organs for transplantation. Several studies have shown that lack of interest for donation is more prevalent in certain races and religions. A 2005 national survey showed that only 31% of African Americans and only 39% of Latinos and Asians would be interested in donating vs. 82% of the Caucasians population (10). Interestingly, African Americans make 13% of the USA population, but compose 23% of the patients on the kidney transplant waiting list (http://optn.transplant.hrsa.gov/). This is not an isolated phenomenon, especially as minorities make up around 50% of the patients on the waiting list and 99% Sunni. Iran is the largest Shiite country in the world with >90% Shiites. Our lack of this specific information may be considered an additional limitation of this study, but there is a paucity of literature from this important part of our population. Our results highlight that education regarding organ donation targeting the Muslim population at large is an important intervention that may lead to an increased donor awareness and ultimately and increased the rate of donation. In addition, involving the Muslim religious leaders in the discussion supporting organ donation is an important way to improve the education in the community. This is imperative given our findings that 40% who chose not to donate would be influenced by a religious figure to donate. Discussing organ donation is important as more and more Muslim countries are starting both cadaveric and living donor programs to address this need for organs. Our findings support specific organ donation educational activities at general Islamic meetings and other gatherings. Our findings also demonstrate that specific education may alter the barrier of misunderstanding. Limitations of this study include small sample size and interview bias. Also, this survey occurred in a single population in a single US city at one time and therefore not necessarily generalizable to the entire US Muslim population. The lack of statistical significance despite the 25% conversion rate is reflective of the overall small numbers, although 13 additional donors would have tremendous significance for the recipients of those organs. Our sample size did represent different backgrounds and different levels of education, therefore may be generalizable to other Muslim Arab American communities. Strengths of this study include the inclusion of Arabic-speaking Americans, as the inclusion of Arabic-speaking Americans in today’s literature is lacking. The diversity of the group, including religious scholars and medical professionals, adds to the strength of study. Another
Education to improve Muslim donation rates limitation of this study is the fact that we did not and would not have been able to follow up with the participants who had converted from being non-donors to willing to be donors. This is based on the fact that this was an anonymous survey and we did not collect names or addresses from the responders. Therefore, we are unsure whether those individuals have entered the donor pool after this intervention. In summary, we suggest that primary reason for lack of willingness to be organ donors in the Muslim American population is the lack of religious knowledge on this topic, not the official religious stance itself. We also successfully had a brief educational intervention which increased the participants’ willingness to consider donation. To increase awareness of Islam’s acceptance of organ donation, Islam position statements and fatwas about organ donation as presented in ISNA could be more prevalent in health care, and shared with social workers and chaplains. Conclusion
We identified multiple barriers to organ donation among Muslim Arab Americans. Our focused education intervention did not change all these barriers, but helped educate the interviewees about the Islamic viewpoint of organ transplantation and donation which positively impacted the willingness of our participants to be organ donors. Our educational intervention may be used to increase the willingness of Muslim Americans to donate. Further work is needed to validate the efficacy of this educational intervention. Acknowledgements I would like to acknowledge Jennifer Laughlin for her help in formatting and presentation. K. Sarah Hoehn, MD, MBe takes responsibility for the entire manuscript, and the integrity of the entire process.
Authors’ contributions
Dr. Hafzalah was the inspiration behind the study, and responsible for conceptual design, data acquisition, data analysis, drafting the article, and approved the final manuscript as written. Dr. Azzam was responsible for conception of the study, data analysis, manuscript revision, and
approved the final manuscript as written. Dr. Testa was responsible for conception of the study, data analysis, manuscript revision, and approved the final manuscript as written. Dr. Hoehn was responsible for the conception of the study, supervision of data collection, data analysis, manuscript revision, and approved the final manuscript as written. References 1. PADELA AI, RASHEED S, WARREN GJ, CHOI H, MATHUR AK. Factors associated with positive attitudes toward organ donation in Arab Americans. Clin Transplant 2011: 25: 800. 2. DANIELS DE, SMITH K, PARKS-THOMAS T, GIBBS D, ROBINSON J. Organ and tissue donation: are minorities willing to donate? Ann Transplant 1998: 3: 22. 3. DAVIS C, RANDHAWA G. The influence of religion on organ donation and transplantation among the black Caribbean and black African population – a pilot study in the United Kingdom. Ethn Dis 2006: 16: 281. 4. SCHAEFFNER ES, WINDISCH W, FREIDEL K, BREITENFELDT K, WINKELMAYER WC. Knowledge and attitude regarding organ donation among medical students and physicians. Transplantation 2004: 77: 1714. 5. SHAHEEN FAM, AL-JONDEBY M, KURPAD R, AL-KHADER AA. Social and cultural issues in organ transplantation in Islamic countries. Ann Transplant 2004: 9: 11. 6. SHAHEEN FAM, SOUQIYYEH MZ. Increasing organ donation rates from Muslim donors: lessons from a successful model. Transpl Proc 2004: 36: 1878. 7. SHAHEEN FAM, SOUQIYYEH MZ, AL-ATTAR B, JARALLA A, SWAILEM ARA. Survey of opinion of secondary school students on organ donation. Saudi J Kidney Dis Transpl 1996: 7: 131. 8. RACHMANI R, MIZRAHI S, AGABARIA R. Attitudes of Negev Beduins toward organ donation: a field survey. Transpl Proc 2000: 32: 757. 9. AL-SHEHRI S, SHAHEEN FA, AL-KHADER AA. Organ donations from deceased persons in the Saudi Arabian population. Exp Clin Transplant 2005: 3: 301. 10. 2005 NATIONAL SURVEY OF ORGAN AND TISSUE DONATION ATTITUDES AND BEHAVIORS. Conducted and Prepared by the Gallup Organization for Division of Transplantation Health Resources and Services Administration. 11. ALBAR M. Islamic ethics of organ transplantation and brain death. Saudi J Kidney Dis Transpl 1996: 7: 109. 12. SHAHEEN FA, SOUQIYYEH MZ. How to improve organ donation in the MESOT countries. Ann Transplant 2004: 9: 19. 13. ABUKSIS G, ORENSTEIN S, HERSHKO A et al. Cornea recipients: are their opinions and attitudes toward organ donation different from those of the general population? Transpl Proc 2004: 36: 1249. 14. MAPPING THE GLOBAL MUSLIM POPULATION. A Report on the Size and Distribution of the World’s Muslim Population, October 2009. Pew Research Center.
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Clin Transplant 2014: 28: 192–197 DOI: 10.1111/ctr.12296
Clinical Transplantation
Improving the potential for organ donation in an inner city Muslim American community: the impact of a religious educational intervention Hafzalah M, Azzam R, Testa G, Hoehn KS. Improving the potential for organ donation in an inner city Muslim American community: the impact of a religious educational intervention.
Mina Hafzalaha, Ruba Azzamb, Giuliano Testac and K. Sarah Hoehnd a
Abstract: Objective: We aimed to assess the willingness of Muslim Americans to be potential organ donors, to describe potential religious barriers to organ donation, and to evaluate the efficacy of a brief religious educational intervention. Methods: Face-to-face survey with English-, Arabic-, and Urduspeaking Muslim American adults in places of worship and gatherings. The two-part survey included questions about demographics and organ donation. A brief educational intervention followed, which included an explanation of organ donation, along with the evidence for Islam’s support for organ donation. After this intervention, the questions about organ donation and brain death were repeated. Results: The response rate was 81% (231 of 285). Fifty percent of the respondents would donate their organs. Twenty-five percent changed their opinion and accepted the idea of being donors after the educational intervention. Lack of awareness of the support of Islam to organ donation and fear of disfigurement were the most common barriers cited. Conclusion: Muslim Americans are less likely than Caucasian Americans to be organ donors, and the perceived lack of support from Islam for organ donation is a factor. The effectiveness of our brief religious education intervention suggests that further education may improve organ donation rates among the Muslim community.
Organ transplantation is the treatment for end organ failure worldwide, yet there are not enough organs to meet the needs (http://www.unos.org/ as of September 2013). In the United States, the Muslim community is a growing minority, yet one that is difficult to track epidemiologically (1). The Muslim community is a racially diverse one with many Muslims originally from the Middle East hence Arabic-speaking. The donation rate among Muslim Americans in the USA is lower than other religious and ethnic groups (2–7). This is true of both solid organ transplants and bone marrow transplants. This low rate has been attributed to religious reasons, specifically the perceived barrier that Islam does not support organ donation (http:// optn.transplant.hrsa.gov/) (8–10). In fact, the maintenance of human life is one of the ultimate goals of Islamic legislation: “Whosoever saves the
192
Children’s Acute Care, Sioux Falls, SD, University of Chicago, Chicago, IL, cBaylor Health System, Dallas, TX, and dUniversity of Kansas Medical Center, Kansas City, KS, USA
b
Key words: Arab American – education – ethics – muslim – religion Corresponding author: K. Sarah Hoehn, MD, MBe, 3901 Rainbow Boulevard, Kansas City, KS 66160, USA. Tel.: 913 588 6324; fax: 913 588 6313; e-mail: [email protected] Conflict of interest: None. Accepted for publication 8 November 2013
life of one person it would be as if he saved the life of all mankind.” (Holy Qur’an, Surat Al-Maeda v 32). The permissibility of organ transplantation and donation has been officially endorsed by Islamic teachings and decrees. This is clearly stated in many religious leaders’ decrees since as early as in 1959 (reference is: Islamic view of Transplantation by Y.I.M. Et-Shahat in Transplantation Proceedings 1999). One of the most well-published is the resolution of the Supreme Council of Ulama in Saudi Arabia that was passed in 1982. The Senior Ulama council heads the religious authority in Saudi Arabia and is composed of 40 of Saudi’s most senior Muslim scholars. Its job is to provide decrees or decisions or juristic ruling concerning Islamic law based on Islamic laws from The Holy Quran and the teachings of Prophet Mohammed (Peace be upon him, PBUH) (the Sunnah). The purport specifically mentioned that the board
Education to improve Muslim donation rates unanimously resolved the permissibility to remove an organ or part thereof from a dead person for the benefit of another should the need arise, should the removal cause no dissatisfaction, and should the transplantation seem likely successful (http:// www.scot.org.sa/islamic-fatwas.html and http:// www.isna.net/Leadership/pages/Islamic-MedicalEthics.aspx) (11, 12). For people in the United States, Islamic society of North America (ISNA) (11) is a resource that could be readily available to chaplains who work with Muslim families in the hospitals as well as to the multiple mosques and Islamic schools in the area. ISNA is an umbrella organization that was founded in 1982 whose goal is to work for the betterment of the Muslim community. It provides a common platform to help support Muslim communities and also develop educational and social programs as well as reach out to other religious and civic organizations and foster good relationships between these groups and the Muslim community. ISNA endorses the same decrees supporting permissibility of organ transplantation. The goals of our project were to describe the barriers that prevent Muslim Americans from being organ donors and to increase awareness of the Muslim public about organ donation and its benefits. The ultimate goal is to help increase the donor pool in the state of Illinois. Our first hypothesis was that Muslim Americans are less likely to be organ donors for lack of understanding the religious position on organ donation and transplantation. The second was that those who refuse to be organ donors would nonetheless accept to be organ recipients. The third was that our short intervention elucidating Islam’s support for organ donation would increase willingness to be a donor. Methods and intervention
The University of Chicago institutional review board granted an exemption from review for the conduct of this study as it was an anonymous field survey. The interviews were conducted face to face with Muslim Americans from three groups: scholars, medical professionals (physicians), and general population. The surveys were administered in mosques, schools, gatherings, at a social services office, and on the University of Chicago campus between November 2008 and November 2009. These locations were based on where one could find a generous representative of Muslim Arab Americans based on discussion with other Muslim Arab Americans. The subjects were English-, Arabic-, or Urdu-speaking Muslim Americans older than 18 yr of age. The study was carried out in these
languages based on the languages of the investigators. The survey questions were presented by two bilingual physicians, one in an Arabic and English, and one in Urdu and English. The survey was also presented by an Arabic- and English-speaking bilingual aid from the Social Services office where many of these interviews were conducted in the presence of the bilingual physician to aid in answering questions and in going through the educational intervention. The survey was composed of two parts (Tables 1 and 2). The first part included questions related to demographics, religiosity (based on compliance with the performance of the daily prayers), country Table 1. Questionnaire Aa Age Sex Level of education Marital status Do you pray every day? Country of origin Years in the USA Do you have a driver’s license? Do you consider yourself a healthy individual? Would you consider being an organ donor? I understand the term brain death to mean: A. Being unable to move or breathe with permanent and unrecoverable loss of all brain function B. Being in a permanent state where I am able to breathe but unable to eat or interact with the environment C. Having a temporary brain injury or being in a comatose state from which recovery may or may not occur D. None of the above Permanent loss of all brainstem function which causes permanent brain failure (in other words brain death) is legally considered death in the USA; do you agree with this definition? Would you want mechanical support (i.e., breathing machine) withdrawn if you were not going to survive? Would your family be supportive of your decision to be an organ donor? Do you know about the various organ donation programs in the Muslim world? Do you personally know of an individual – close relative or friend or member of your community – who has received an organ donation? Do you personally know of an individual – close relative or friend or member of your community – who is listed on the organ/tissue donor registry or voiced interest in being a donor? Do you personally know of an individual – close relative or friend or member of your community – who has been an organ donor? Who would influence you most in how you think about being an organ donor? Check all that would apply:
• • • • a
Myself and my own readings in religion Family members and friends Local religious figures Muslim authorities from my country of origin or any other country
Questionnaire A response choices were yes, no and unsure.
193
Hafzalah et al. Table 2. Questions from questionnaire Ba Would you donate your organs? Would you receive an organ donation? Which of the following contributed to your decision to donate?
• • • •
I have been involved personally in a situation where a loved one would have still been alive if they had received an organ transplant I have been involved personally with a loved one receiving an organ donation I have always wanted to be involved in a great deed This program has helped me gain insight into how vital it is to be involved in people’s lives even after my death
Which of the following contributed to your decision NOT to donate? Check all that apply:
• • • • • •
Because of biases against my ethnic background and religion, I distrust the medical system I would be afraid that they would take my organs even before death I don’t want my body to be disfigured I don’t believe that organ transplantation is a good treatment modality I would not want to receive an organ transplant if my life depended on it, and would rather die I still need the local imam of the mosque in the society that I belong to, to support organ donation and the legal definition of brain death
If there could be one reason to persuade you to be a donor what would it be? a
Questionnaire B responses taken after brief educational intervention.
of origin, and length of residency in the USA. Other questions addressed knowledge of organ donation in the Muslim world, in addition to understanding the concept of brain death and its legality, organ donation after brain death, and any relevant experience with transplantation. The second part of the survey was conducted after the educational intervention had been delivered (30 min). It entailed repeating the questions about willingness to be an organ donor checking for changes in their stands. The second part of the survey was conducted as soon as the teaching session ended. We tried to elucidate the participants’ reasoning as to their refusal or agreement to be organ donors and presented multiple options in the questionnaire that they were able to choose as many as were applicable. Our intervention was a brief (61 yr 26 Level of religiosity, p = 0.18a Pray 5a day 146 Sometimes 39 None 31 Years in the USA, p = 0.84a 20 103 Sex, p = 0.07 Male 118 Female 112 Healthy, p = 0.24 Yes 206 No 33 Income, p = 0.018a 80 000 10 Understand the term brain death, p = 0.18 Yes 138 No 83 Accept brain death as legal death, p = 0.001 Yes 155 No 74 Marital status, p = 0.04 Single 44 Married 172 Divorced/widowed 14 Education, p = 0.34 No answer/≤high school 88 Undergraduate 43 Graduate/post-graduate 63 Medical professional, p = 0.013 24 Muslim scholars, p = 0.44 13 Driver’s license, p = 0.42 Yes 198 No 33
% of willing to donate
55 53 44 58
Donate intervention
Post-educational
Donate pre intervention
Yes
No
Unsure
Yes No Unsure
94% 11% 13.8%
2% 60.5% 24.2%
4% 28.5% 62%
49 56 61 52 48 52 57 45 52 40 73 51 43 50 55 46 61 31 68 47 50 44 46 53 75 62 50 57
a
Wilcoxon rank-sum test. Bold indicates statistical significance.
choose any option that pertained to their rationale. The choices included their own readings, as well as needing a religious figure to support donation. In the majority of cases, the respondents in favor of donation cited their own readings (67%) and performing a good deed (40%) as the influencing factors. Factors to influence the decision not to donate included needing a religious figure to support donation (40%), disfigurement (33%), and distrust of the medical system (8%) (Table 5). Seventeen percent voiced their willingness to be recipients but were adamantly against being cadaveric organ donors. Discussion
In our pilot study, we did find that the Muslim Arab Americans who participated in our study were less likely to agree to be organ donors than the general population. In addition, we confirmed our hypothesis that Islam played a role in their unwillingness to be donors, despite their willingness to accept organs. Most importantly, we found that a brief educational intervention sharing the decrees from Islam that support organ donation increased the willingness of our participants to consider being organ donors. This increase in willingness to consider organ donation highlights the role of religious education in this population. Table 5. Influences on donationa
conversion rate was 14% (4 of 29) for the group that was unsure initially and 11% (9 of 81) for the group that refused donation initially prior to our intervention (p = 0.26). Although this was not statistically significant, it does demonstrate an ability to change their willingness to donate via education. Our analysis was a comparison of pre- and post hoc comparisons, using Fisher’s exact t test (Table 4). In terms of which factors influenced their decision-making in regard to donation, participants were given a list of choices and they were able to
Influences to donate
N
%
Own reading
145
67
Great deed Family
73 47
44 22
Local figure Authority elsewhere
43 19
20 9
a
Influences not to donate Need local religious figure to support Disfigurement Take organ prior to death Rather die Medical system distrust
N
%
32
40
26 9
33 11
8 6
10 8
Participants were able to choose multiple options.
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Hafzalah et al.
The disparity between need for organs and available organs continues to grow, and this is particularly true in the Muslim American population. Recent literature confirms the lack of available organs, especially from minority populations (2, 3). Current data from United Network for Organ Sharing (UNOS) indicate that there are 119 482 patients listed for transplantation (http://www. unos.org/ as of September 2013). This is in contrast to actual number of transplants performed, 11 580 as of January 2013. On average, 18 people die per day while awaiting an organ transplant (http:// optn.transplant.hrsa.gov/). Average waiting time for transplantation varies by age and indication from weeks to years depending on the organ and blood type (http://optn.transplant.hrsa.gov/). There is unwillingness to become an organ donor for a multitude of reasons. Lack of adequate education is an important factor restricting the growth of the donor pool size of available organs for transplantation. Several studies have shown that lack of interest for donation is more prevalent in certain races and religions. A 2005 national survey showed that only 31% of African Americans and only 39% of Latinos and Asians would be interested in donating vs. 82% of the Caucasians population (10). Interestingly, African Americans make 13% of the USA population, but compose 23% of the patients on the kidney transplant waiting list (http://optn.transplant.hrsa.gov/). This is not an isolated phenomenon, especially as minorities make up around 50% of the patients on the waiting list and 99% Sunni. Iran is the largest Shiite country in the world with >90% Shiites. Our lack of this specific information may be considered an additional limitation of this study, but there is a paucity of literature from this important part of our population. Our results highlight that education regarding organ donation targeting the Muslim population at large is an important intervention that may lead to an increased donor awareness and ultimately and increased the rate of donation. In addition, involving the Muslim religious leaders in the discussion supporting organ donation is an important way to improve the education in the community. This is imperative given our findings that 40% who chose not to donate would be influenced by a religious figure to donate. Discussing organ donation is important as more and more Muslim countries are starting both cadaveric and living donor programs to address this need for organs. Our findings support specific organ donation educational activities at general Islamic meetings and other gatherings. Our findings also demonstrate that specific education may alter the barrier of misunderstanding. Limitations of this study include small sample size and interview bias. Also, this survey occurred in a single population in a single US city at one time and therefore not necessarily generalizable to the entire US Muslim population. The lack of statistical significance despite the 25% conversion rate is reflective of the overall small numbers, although 13 additional donors would have tremendous significance for the recipients of those organs. Our sample size did represent different backgrounds and different levels of education, therefore may be generalizable to other Muslim Arab American communities. Strengths of this study include the inclusion of Arabic-speaking Americans, as the inclusion of Arabic-speaking Americans in today’s literature is lacking. The diversity of the group, including religious scholars and medical professionals, adds to the strength of study. Another
Education to improve Muslim donation rates limitation of this study is the fact that we did not and would not have been able to follow up with the participants who had converted from being non-donors to willing to be donors. This is based on the fact that this was an anonymous survey and we did not collect names or addresses from the responders. Therefore, we are unsure whether those individuals have entered the donor pool after this intervention. In summary, we suggest that primary reason for lack of willingness to be organ donors in the Muslim American population is the lack of religious knowledge on this topic, not the official religious stance itself. We also successfully had a brief educational intervention which increased the participants’ willingness to consider donation. To increase awareness of Islam’s acceptance of organ donation, Islam position statements and fatwas about organ donation as presented in ISNA could be more prevalent in health care, and shared with social workers and chaplains. Conclusion
We identified multiple barriers to organ donation among Muslim Arab Americans. Our focused education intervention did not change all these barriers, but helped educate the interviewees about the Islamic viewpoint of organ transplantation and donation which positively impacted the willingness of our participants to be organ donors. Our educational intervention may be used to increase the willingness of Muslim Americans to donate. Further work is needed to validate the efficacy of this educational intervention. Acknowledgements I would like to acknowledge Jennifer Laughlin for her help in formatting and presentation. K. Sarah Hoehn, MD, MBe takes responsibility for the entire manuscript, and the integrity of the entire process.
Authors’ contributions
Dr. Hafzalah was the inspiration behind the study, and responsible for conceptual design, data acquisition, data analysis, drafting the article, and approved the final manuscript as written. Dr. Azzam was responsible for conception of the study, data analysis, manuscript revision, and
approved the final manuscript as written. Dr. Testa was responsible for conception of the study, data analysis, manuscript revision, and approved the final manuscript as written. Dr. Hoehn was responsible for the conception of the study, supervision of data collection, data analysis, manuscript revision, and approved the final manuscript as written. References 1. PADELA AI, RASHEED S, WARREN GJ, CHOI H, MATHUR AK. Factors associated with positive attitudes toward organ donation in Arab Americans. Clin Transplant 2011: 25: 800. 2. DANIELS DE, SMITH K, PARKS-THOMAS T, GIBBS D, ROBINSON J. Organ and tissue donation: are minorities willing to donate? Ann Transplant 1998: 3: 22. 3. DAVIS C, RANDHAWA G. The influence of religion on organ donation and transplantation among the black Caribbean and black African population – a pilot study in the United Kingdom. Ethn Dis 2006: 16: 281. 4. SCHAEFFNER ES, WINDISCH W, FREIDEL K, BREITENFELDT K, WINKELMAYER WC. Knowledge and attitude regarding organ donation among medical students and physicians. Transplantation 2004: 77: 1714. 5. SHAHEEN FAM, AL-JONDEBY M, KURPAD R, AL-KHADER AA. Social and cultural issues in organ transplantation in Islamic countries. Ann Transplant 2004: 9: 11. 6. SHAHEEN FAM, SOUQIYYEH MZ. Increasing organ donation rates from Muslim donors: lessons from a successful model. Transpl Proc 2004: 36: 1878. 7. SHAHEEN FAM, SOUQIYYEH MZ, AL-ATTAR B, JARALLA A, SWAILEM ARA. Survey of opinion of secondary school students on organ donation. Saudi J Kidney Dis Transpl 1996: 7: 131. 8. RACHMANI R, MIZRAHI S, AGABARIA R. Attitudes of Negev Beduins toward organ donation: a field survey. Transpl Proc 2000: 32: 757. 9. AL-SHEHRI S, SHAHEEN FA, AL-KHADER AA. Organ donations from deceased persons in the Saudi Arabian population. Exp Clin Transplant 2005: 3: 301. 10. 2005 NATIONAL SURVEY OF ORGAN AND TISSUE DONATION ATTITUDES AND BEHAVIORS. Conducted and Prepared by the Gallup Organization for Division of Transplantation Health Resources and Services Administration. 11. ALBAR M. Islamic ethics of organ transplantation and brain death. Saudi J Kidney Dis Transpl 1996: 7: 109. 12. SHAHEEN FA, SOUQIYYEH MZ. How to improve organ donation in the MESOT countries. Ann Transplant 2004: 9: 19. 13. ABUKSIS G, ORENSTEIN S, HERSHKO A et al. Cornea recipients: are their opinions and attitudes toward organ donation different from those of the general population? Transpl Proc 2004: 36: 1249. 14. MAPPING THE GLOBAL MUSLIM POPULATION. A Report on the Size and Distribution of the World’s Muslim Population, October 2009. Pew Research Center.
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