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Attitudes of high school students regarding organ donation
Attitudes of High School Students Regarding Organ Donation T. Jafri and V. Tellis
T
HERE continues to be a serious and growing dichotomy between the need for and availability of human organs for transplantation. In 1999, 21,990 transplants were performed in the United States, but 6012 people died while on the waiting list, which still numbered 67,755 patients at year’s end.1 A slight increase in transplants over previous years was largely a result of increased living donation of kidneys, livers, and lungs, while the number of heart transplants, dependent entirely on cadaver donors, actually decreased. The number of cadaver donors has remained relatively stable, stimulating various proposals for increasing donation. In 1998, Neuberger et al2 distributed a questionnaire regarding liver allocation and reported varied responses from the general public, gastroenterologists, and family doctors. However, there has been little exploration of the views of today’s youth, who will be tomorrow’s donors and recipients.3
transplant, 60% chance of living 5 years with heart transplant, (4) JC an African-American mechanic for 30 years cannot work because of dialysis schedule, could have normal activity with kidney transplant (5) CS a 27-year-old Latino married, with two children under 5 years old will die within 1 year of liver failure due to alcohol. Still drinking. (6) LA a 40-year-old socialite on dialysis. Does not take medications regularly; misses dialysis if it conflicts with social schedule]; and views regarding payment for transplant expenses. Questionnaires were sent to 22 high schools for distribution to science classes and for comparison to 550 transplant professionals (transplant surgeons, physicians, coordinators, and social workers) through the mail or in person; 83 religious organizations; and to patients, directly or through support groups and transplant institutions. There were minor variations in questions tailored to each group (e.g., professionals were queried regarding distribution system, patients regarding what type of organ they received). Results were tabulated and analyzed.
METHODS
Responses were received from 1261 students, 212 professionals, 56 patients, and 27 clergy members. Prioritization of recipients by different groups is shown in Table 1. Students (97.9%) believed transplantation to be acceptable medical practice. The majority (66.5%) had some knowledge about transplantation: 41% from printed material 11.7% from lectures. Forty-one percent favored recovery of cadaver organs unless prior opposition was documented (presumed consent); 42.5% favored financial incentives for cadaver donor families (e.g., funeral expenses); and 66.9%
A questionnaire was designed to determine the views of high school students toward organ donation and transplantation. Fifteen questions explored demographic information; opinions regarding potential solutions to the scarcity of organs [sample question: (a) “Every person must donate organs when they die,” (b) “Every person must donate organs when they die, unless they previously expressed opposition to donation,” (c) “the donor’s family will be entitled to assistance such as (choose) (i) funeral expenses, (ii) tax rebates, (iii) college scholarships]; a request for prioritization among fictitious potential recipients with varying medical, social, and ethnic backgrounds [(1) MB, a 56-year-old retired basketball star; will die in 24 hours from failure of a previous liver transplant because he did not take prescribed medication, (2) TN, a Vietnamese day laborer, will die in next year from rare liver disease, 80% chance of living 1 year with transplant, (3) VR a 35-year-old Caucasian in jail for forgery will die within 3 months without heart
RESULTS
From Byram Hills High School (T.J.), Byram Hill, New York and Montefiore Medical Center, the University Hospital for the Albert Einstein College of Medicine (V.T.), New York, New York. Address reprint requests to Dr V.A. Tellis, Montefiore Medical Center, 111 E 210th St, Bronx, NY 10467.
Table 1. Highest and Lowest Priority Assigned to Patients by Groups
Students Patients Clergy Professional
Highest Lowest Highest Lowest Highest Lowest Highest Lowest
0041-1345/01/$–see front matter PII S0041-1345(00)02289-2
MB
TN
VR
JC
CS
LA
26.4% 11.9% 3.6% 16.1% 7.1% 3.7% 14.6% 18.9%
17.9% 5.07% 17.8% 1.8% 11.1% 0 41.5% 0
5.95% 19.3% 3.6% 8.9% 0 29.6% 6.13% 6.6%
37.9% 3.96% 32.1% 5.4% 70% 3.7% 33% 0.4%
7.93% 26.1% 8.9% 10.7% 0 7.4% 0 50%
1.6% 32% 1.8% 23.2% 0 40.0% 0 16.0%
© 2001 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
968
Transplantation Proceedings, 33, 968–969 (2001)
HIGH SCHOOL STUDENTS’ ATTITUDES
approved government reimbursement for live donation. Professionals (81% transplant surgeons), when queried regarding the organ distribution system, weakly (50%) supported it, whereas 35% favored modifications; 15% opposed it completely. Presumed consent was favored by 94%. Only 17.5% approved of incentives for cadaver donors, but 60.9% favored reimbursement to live donors by an outside agency. Patients (82% kidney recipients) were well informed (89%) about transplantation. Most felt the wait was too long (32% had waited 12 to 24 months, 20% ⬎ 24 months). According to clergy members (Christian, Jewish, Moslem), their religions permitted transplantation; they favored payments to live donors (56%) and to cadaver donor families (63%); presumed consent was approved by only 37%. Signed donor cards were carried by 90% of professionals, 48% of patients, and 40% of clergy, but only 11% of students. Xenografts as an option were approved by all groups (75% to 95%). Cost of transplant was felt by all groups (50% to 78%) to be best shared by government, insurance, and patients. DISCUSSION
The worldwide scarcity of human organs for transplantation has generated strategies such as presumed consent legislation, incentives for cadaver organ donation, and compensation (such as for lost wages) to live donors. Each initiative has supporters and detractors, and raises ethical concerns. This study was focused on students, the “public” of the future, but also surveyed professionals, clergy, and recipients, whose views could have an important effect on molding public opinion. Statistical comparison between groups was not feasible because the groups varied greatly in number. Students generally approved of transplants, but few carried donor cards. Their information about transplant was obtained mostly from nonschool sources. For organ allocation, they generally approved of medical criteria, and opposed racial and social criteria. Interestingly, one quarter assigned preferential status to an irresponsible “star” (MB). Professionals did not strongly support the current allocation system. In allocation, they placed emphasis on compliance. They disapproved of social considerations, yet gave low priority to a young potential heart recipient who was in
969
prison. They were strongly for presumed consent and against financial incentives for cadaver donor families, views that were diametrically opposed to those of clergy. Clergy were supportive of donation, but a minority carried donor cards. All confirmed that their religions did not oppose transplantation. Other than clergy, presumed consent for organ donation (unless previous opposition was documented) had support from all groups; 28% of recipients favored retrieval irrespective of prior opposition. Payment to live donors was favored among students, clergy, patients, and professionals. However, indirect means were preferred over direct payment for organs. Xenografting was viewed favorably option by almost all. There was general agreement that the costs of transplantation should be spread between various agencies, with the patient bearing part of the burden. CONCLUSIONS
Potential solutions to the paucity of donated organs, as well as the rules for allocation, elicited different viewpoints among important sectors of the population. There is disagreement within and between groups. There is need of education, as well as for further studies among various subgroups: for example, recipients by type of organ, professionals by occupation, clergy by denomination. This in turn could help produce consensus in public policy, leading to increased organ donation. ACKNOWLEDGMENTS The authors wish to express their appreciation to Dr Robert Pavlika, Byram Hills High School, the staff of the Montefiore Transplant program, TRIO members, and those who responded to the questionnaire, for their help and cooperation.
REFERENCES 1. UNOS Update. May 2000. Richmond, VA: United Network for Organ Sharing; 2000 2. Neuberger J, Adams D, MacMaster P, et al: BMJ 317:172, 1998 3. Shoenberg RE: In: The Surgeon General’s Workshop on Increasing Organ Donation. Washington, DC: US Department of Health and Human Services; 1991
T
HERE continues to be a serious and growing dichotomy between the need for and availability of human organs for transplantation. In 1999, 21,990 transplants were performed in the United States, but 6012 people died while on the waiting list, which still numbered 67,755 patients at year’s end.1 A slight increase in transplants over previous years was largely a result of increased living donation of kidneys, livers, and lungs, while the number of heart transplants, dependent entirely on cadaver donors, actually decreased. The number of cadaver donors has remained relatively stable, stimulating various proposals for increasing donation. In 1998, Neuberger et al2 distributed a questionnaire regarding liver allocation and reported varied responses from the general public, gastroenterologists, and family doctors. However, there has been little exploration of the views of today’s youth, who will be tomorrow’s donors and recipients.3
transplant, 60% chance of living 5 years with heart transplant, (4) JC an African-American mechanic for 30 years cannot work because of dialysis schedule, could have normal activity with kidney transplant (5) CS a 27-year-old Latino married, with two children under 5 years old will die within 1 year of liver failure due to alcohol. Still drinking. (6) LA a 40-year-old socialite on dialysis. Does not take medications regularly; misses dialysis if it conflicts with social schedule]; and views regarding payment for transplant expenses. Questionnaires were sent to 22 high schools for distribution to science classes and for comparison to 550 transplant professionals (transplant surgeons, physicians, coordinators, and social workers) through the mail or in person; 83 religious organizations; and to patients, directly or through support groups and transplant institutions. There were minor variations in questions tailored to each group (e.g., professionals were queried regarding distribution system, patients regarding what type of organ they received). Results were tabulated and analyzed.
METHODS
Responses were received from 1261 students, 212 professionals, 56 patients, and 27 clergy members. Prioritization of recipients by different groups is shown in Table 1. Students (97.9%) believed transplantation to be acceptable medical practice. The majority (66.5%) had some knowledge about transplantation: 41% from printed material 11.7% from lectures. Forty-one percent favored recovery of cadaver organs unless prior opposition was documented (presumed consent); 42.5% favored financial incentives for cadaver donor families (e.g., funeral expenses); and 66.9%
A questionnaire was designed to determine the views of high school students toward organ donation and transplantation. Fifteen questions explored demographic information; opinions regarding potential solutions to the scarcity of organs [sample question: (a) “Every person must donate organs when they die,” (b) “Every person must donate organs when they die, unless they previously expressed opposition to donation,” (c) “the donor’s family will be entitled to assistance such as (choose) (i) funeral expenses, (ii) tax rebates, (iii) college scholarships]; a request for prioritization among fictitious potential recipients with varying medical, social, and ethnic backgrounds [(1) MB, a 56-year-old retired basketball star; will die in 24 hours from failure of a previous liver transplant because he did not take prescribed medication, (2) TN, a Vietnamese day laborer, will die in next year from rare liver disease, 80% chance of living 1 year with transplant, (3) VR a 35-year-old Caucasian in jail for forgery will die within 3 months without heart
RESULTS
From Byram Hills High School (T.J.), Byram Hill, New York and Montefiore Medical Center, the University Hospital for the Albert Einstein College of Medicine (V.T.), New York, New York. Address reprint requests to Dr V.A. Tellis, Montefiore Medical Center, 111 E 210th St, Bronx, NY 10467.
Table 1. Highest and Lowest Priority Assigned to Patients by Groups
Students Patients Clergy Professional
Highest Lowest Highest Lowest Highest Lowest Highest Lowest
0041-1345/01/$–see front matter PII S0041-1345(00)02289-2
MB
TN
VR
JC
CS
LA
26.4% 11.9% 3.6% 16.1% 7.1% 3.7% 14.6% 18.9%
17.9% 5.07% 17.8% 1.8% 11.1% 0 41.5% 0
5.95% 19.3% 3.6% 8.9% 0 29.6% 6.13% 6.6%
37.9% 3.96% 32.1% 5.4% 70% 3.7% 33% 0.4%
7.93% 26.1% 8.9% 10.7% 0 7.4% 0 50%
1.6% 32% 1.8% 23.2% 0 40.0% 0 16.0%
© 2001 by Elsevier Science Inc. 655 Avenue of the Americas, New York, NY 10010
968
Transplantation Proceedings, 33, 968–969 (2001)
HIGH SCHOOL STUDENTS’ ATTITUDES
approved government reimbursement for live donation. Professionals (81% transplant surgeons), when queried regarding the organ distribution system, weakly (50%) supported it, whereas 35% favored modifications; 15% opposed it completely. Presumed consent was favored by 94%. Only 17.5% approved of incentives for cadaver donors, but 60.9% favored reimbursement to live donors by an outside agency. Patients (82% kidney recipients) were well informed (89%) about transplantation. Most felt the wait was too long (32% had waited 12 to 24 months, 20% ⬎ 24 months). According to clergy members (Christian, Jewish, Moslem), their religions permitted transplantation; they favored payments to live donors (56%) and to cadaver donor families (63%); presumed consent was approved by only 37%. Signed donor cards were carried by 90% of professionals, 48% of patients, and 40% of clergy, but only 11% of students. Xenografts as an option were approved by all groups (75% to 95%). Cost of transplant was felt by all groups (50% to 78%) to be best shared by government, insurance, and patients. DISCUSSION
The worldwide scarcity of human organs for transplantation has generated strategies such as presumed consent legislation, incentives for cadaver organ donation, and compensation (such as for lost wages) to live donors. Each initiative has supporters and detractors, and raises ethical concerns. This study was focused on students, the “public” of the future, but also surveyed professionals, clergy, and recipients, whose views could have an important effect on molding public opinion. Statistical comparison between groups was not feasible because the groups varied greatly in number. Students generally approved of transplants, but few carried donor cards. Their information about transplant was obtained mostly from nonschool sources. For organ allocation, they generally approved of medical criteria, and opposed racial and social criteria. Interestingly, one quarter assigned preferential status to an irresponsible “star” (MB). Professionals did not strongly support the current allocation system. In allocation, they placed emphasis on compliance. They disapproved of social considerations, yet gave low priority to a young potential heart recipient who was in
969
prison. They were strongly for presumed consent and against financial incentives for cadaver donor families, views that were diametrically opposed to those of clergy. Clergy were supportive of donation, but a minority carried donor cards. All confirmed that their religions did not oppose transplantation. Other than clergy, presumed consent for organ donation (unless previous opposition was documented) had support from all groups; 28% of recipients favored retrieval irrespective of prior opposition. Payment to live donors was favored among students, clergy, patients, and professionals. However, indirect means were preferred over direct payment for organs. Xenografting was viewed favorably option by almost all. There was general agreement that the costs of transplantation should be spread between various agencies, with the patient bearing part of the burden. CONCLUSIONS
Potential solutions to the paucity of donated organs, as well as the rules for allocation, elicited different viewpoints among important sectors of the population. There is disagreement within and between groups. There is need of education, as well as for further studies among various subgroups: for example, recipients by type of organ, professionals by occupation, clergy by denomination. This in turn could help produce consensus in public policy, leading to increased organ donation. ACKNOWLEDGMENTS The authors wish to express their appreciation to Dr Robert Pavlika, Byram Hills High School, the staff of the Montefiore Transplant program, TRIO members, and those who responded to the questionnaire, for their help and cooperation.
REFERENCES 1. UNOS Update. May 2000. Richmond, VA: United Network for Organ Sharing; 2000 2. Neuberger J, Adams D, MacMaster P, et al: BMJ 317:172, 1998 3. Shoenberg RE: In: The Surgeon General’s Workshop on Increasing Organ Donation. Washington, DC: US Department of Health and Human Services; 1991