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Is Rapid Organ Recovery a Good Idea? An Exploratory Study of the Public’s Knowledge and Attitudes

2009; Elsevier BV; Volume: 9; Issue: 10 Linguagem: Inglês

10.1111/j.1600-6143.2009.02760.x

1600-6143

James M. DuBois, Amy D. Waterman, Ana S. Iltis, John Anderson,

Grief, Bereavement, and Mental Health

In 2006, the Institute of Medicine (IOM) recommended demonstration projects on uncontrolled donation after cardiac death or rapid organ recovery (ROR). To investigate what the public thinks about key ethical and policy questions associated with ROR, 70 African-American, Caucasian and Latino community members in St. Louis, MO, participated in focus groups and completed surveys, before and after being educated about ROR. Before the focus group, most participants believed mistakenly that they could donate organs following an unexpected cardiac arrest (76%). After the focus group, 84% would want to donate organs after unexpected cardiac arrest; 81% would support organ cooling to enable this. The public generally supported organ cooling without family consent if the individual had joined the donor registry, but were mixed in their opinions about what should be done if they were not on the registry. African-American and Latino participants expressed greater fears than Caucasians that if they consented to organ donation, physicians might do less to save their life; however, support for ROR was not significantly lower in these subgroups. Although this study is exploratory, public support for ROR was present. We recommend that adequate consent processes and safeguards be established to foster trust and support for ROR. In 2006, the Institute of Medicine (IOM) recommended demonstration projects on uncontrolled donation after cardiac death or rapid organ recovery (ROR). To investigate what the public thinks about key ethical and policy questions associated with ROR, 70 African-American, Caucasian and Latino community members in St. Louis, MO, participated in focus groups and completed surveys, before and after being educated about ROR. Before the focus group, most participants believed mistakenly that they could donate organs following an unexpected cardiac arrest (76%). After the focus group, 84% would want to donate organs after unexpected cardiac arrest; 81% would support organ cooling to enable this. The public generally supported organ cooling without family consent if the individual had joined the donor registry, but were mixed in their opinions about what should be done if they were not on the registry. African-American and Latino participants expressed greater fears than Caucasians that if they consented to organ donation, physicians might do less to save their life; however, support for ROR was not significantly lower in these subgroups. Although this study is exploratory, public support for ROR was present. We recommend that adequate consent processes and safeguards be established to foster trust and support for ROR. Despite growing rates of consent to organ donation and improved graft survival techniques, the number of people on the transplant waiting list has grown more than 6-fold since 1988 (LabelOrgan Procurement and Transplantation Network. National Data. 2008 [cited 2008 December 27]. Available from:http://www.optn.org.Google Scholar,2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). Of the 2 million people who die each year in the United States, only approximately 12 000 are declared dead using 'brain death' or neurological criteria—the criteria currently used in approximately 92% of all cases of deceased donation (3The U.S. Organ Procurement and Transplantation Network and the Scienti?c Registry of Transplant Recipients. 2007 OPTN/SRTR Annual Report: Transplant Data 1997–2006. In: US Department of Health and Human Services/HRSA/HSB/DOT, Rockville, MD; 2007.Google Scholar). Accordingly, the medical system continues to evaluate possibilities for increasing the number of potential deceased donors (2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). Among these possibilities, rapid organ recovery (ROR) or uncontrolled donation after cardiac death (uncontrolled DCD) involves recovery of kidneys following death from anunexpectedcirculatory arrest (4Kowalski AE Light JA Ritchie WO Sasaki TM Callender CO Gage F A new approach for increasing the organ supply.Clin Transplant. 1996; 10: 653-657PubMed Google Scholar). Most cases arise from unexpected cardiac arrest outside of the hospital or from uncontrolled bleeding (e.g. from a gunshot wound). Despite increased rates of delayed graft function, the graft and patient survival rates for donation after cardiac death (DCD) kidneys—both controlled DCD and ROR—are indistinguishable from standard deceased donor kidneys (5Gagandeep S Matsuoka L Mateo R et al.Expanding the donor kidney pool: Utility of renal allografts procured in a setting of uncontrolled cardiac death.Am J Transplant. 2006; 6: 1682-1688Crossref PubMed Scopus (85) Google Scholar, 6Cooper JT Chin LT Krieger NR et al.Donation after cardiac death: The University of Wisconsin experience with renal transplantation.Am J Transplant. 2004; 4: 1490-1494Crossref PubMed Scopus (144) Google Scholar, 7Droupy S Blanchet P Eschwege P et al.Long-term results of renal transplantation using kidneys harvested from non-heartbeating donors: A 15-year experience.J Urol. 2003; 169: 2831Crossref Scopus (20) Google Scholar). Although ROR is uncommon in the United States, some transplant centers in Spain and the Netherlands recover a majority of their kidneys through ROR (8Sanchez-Fructuoso A Giorgi M Barrientos A Kidney transplantation from non-heart-beating donors: A Spanish view.Transplant Rev. 2007; 21: 249-254Crossref Scopus (17) Google Scholar,9Kootstra G Kievit J Nederstigt A Organ donors: Heartbeating and non-heartbeating.World J Surg. 2002; 26: 181-184Crossref PubMed Scopus (61) Google Scholar). Using a large dataset of out-of-hospital cardiac arrests (10Alvarez J Del Barrio M Arias J et al.Five years of experience with non-heart-beating donors coming from the streets.Transplant Proc. 2002; 34: 2589-2590Crossref PubMed Scopus (24) Google Scholar), the 2006 IOM Committee on Increasing Rates of Organ Donation concluded that of the estimated annual 335 000 cardiac arrest deaths in the United States, approximately 22 000 decedents would be eligible donors using ROR Modified Madrid Criteria protocols (2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). This represents a nearly 200% increase in the number of potential deceased kidney donors. Accordingly, the IOM recommended that the U.S. Department of Health and Human Services, states and local entities encourage and fund ROR demonstration projects in cities with established and extensive trauma centers and emergency response systems and obtain community input and permission (2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). However, implementation of ROR programs in the United States generates significant ethical and policy questions. First, how long should patients receive resuscitative efforts before they are pronounced dead and considered eligible for ROR (11Doig CJ Zygun DA (Uncontrolled) donation after cardiac determination of death: A note of caution.J Law, Med Ethics. 2008; 36: 760-765Crossref PubMed Scopus (18) Google Scholar)? The IOM refrained from specifying how long resuscitative efforts should be sustained (recommending rather that best practices be regularly updated and followed) (2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). Second, following circulatory arrest, organs will quickly die unless circulation is artificially restored or organs are cooled through catheters placed in the abdomen, femoral artery and vein ('organ cooling') (2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). Because circulatory arrest is typically unexpected, family members are rarely present to grant consent for organ cooling. If cooling is not initiated, the opportunity to donate organs is lost and some family members may be upset if the patient had wished to donate (LabelOrgan Procurement and Transplantation Network. National Data. 2008 [cited 2008 December 27]. Available from:http://www.optn.org.Google Scholar,14Bonnie RJ Wright S Dineen KK Legal authority to preserve organs in cases of uncontrolled cardiac death: Preserving family choice.J Law, Med Ethics. 2008; 36: 741-751Crossref PubMed Scopus (21) Google Scholar). However, if cooling is initiated without permission, family members may likewise be upset, particularly if the decedent did not wish to donate organs (15Institute of Medicine. Non-heart-beating organ transplantation: Medical and ethical issues in procurement. Washington, DC: Na- tional Academy Press, 1997.Google Scholar,16DuBois JM Increasing rates of organ donation: Exploring the Institute of Medicine's boldest recommendation.J Clin Ethics. 2009; 20: 64-78Crossref PubMed Google Scholar). Past research about deceased donation has shown that, although the public is generally supportive of organ donation (3The U.S. Organ Procurement and Transplantation Network and the Scienti?c Registry of Transplant Recipients. 2007 OPTN/SRTR Annual Report: Transplant Data 1997–2006. In: US Department of Health and Human Services/HRSA/HSB/DOT, Rockville, MD; 2007.Google Scholar,17Siminoff LA Gordon N Hewlett J Arnold RM Factors influencing families' consent for donation of solid organs for transplantation.JAMA. 2001; 286: 71-77Crossref PubMed Scopus (506) Google Scholar), they also have poor knowledge about neurological determinations of death (18Siminoff LA Burant CJ Ibrahim SA Racial disparities in preferences and perceptions regarding organ donation.J Gen Intern Med. 2006; 21: 995-1000Crossref PubMed Scopus (130) Google Scholar, 19Siminoff LA Burant C Youngner SJ Death and organ procurement: Public beliefs and attitudes.Kennedy Inst Ethics J. 2004; 14: 217-234Crossref PubMed Scopus (103) Google Scholar, 20DuBois J Schmidt T Does the public support organ donation using higher brain-death criteria?.J Clin Ethics. 2003; 14: 26-36Crossref PubMed Google Scholar) and fear that agreeing to donate organs could compromise the quality of care they receive if critically injured (19Siminoff LA Burant C Youngner SJ Death and organ procurement: Public beliefs and attitudes.Kennedy Inst Ethics J. 2004; 14: 217-234Crossref PubMed Scopus (103) Google Scholar, 20DuBois J Schmidt T Does the public support organ donation using higher brain-death criteria?.J Clin Ethics. 2003; 14: 26-36Crossref PubMed Google Scholar, 21DuBois JM Anderson EE Attitudes toward death criteria and organ donation among healthcare personnel and the general public.Prog Transplant. 2006; 16: 65-73Crossref PubMed Google Scholar). Prior studies have found that minorities frequently express greater mistrust than Caucasians toward the medical and transplant systems (18Siminoff LA Burant CJ Ibrahim SA Racial disparities in preferences and perceptions regarding organ donation.J Gen Intern Med. 2006; 21: 995-1000Crossref PubMed Scopus (130) Google Scholar,22Callendar CO Hall LE Yeager CL Barber JBJ Dunston GM Pinn-Wiggins VW Organ donation and blacks. A critical frontier.N Engl J Med. 1991; 325: 442-444Crossref PubMed Scopus (79) Google Scholar,23Callender CO Hall MB Branch D An assessment of the effectiveness of the Mottep model for increasing donation rates and preventing the need for transplantation-adult findings: Program years 1998 and 1999.Semin Nephrol. 2001; 21: 419-428Abstract Full Text PDF PubMed Scopus (59) Google Scholar). Although descriptive summaries of how the public was informed about active ROR protocols have been published (24Light JA The Washington, DC experience with uncontrolled donation after circulatory determination of death: Promises and pitfalls.J Law Med Ethics. 2008; 36: 735-740Crossref PubMed Scopus (24) Google Scholar,25Light JA Kowalski AE Ritchie WO et al.New profile of cadaveric donors: What are the kidney donor limits?.Transplant Proc. 1996; 28: 17-20PubMed Google Scholar), there is almost no research examining the public's attitudes toward ROR. To learn more about what the public thinks about ROR, we conducted an exploratory qualitative and quantitative mixed methods exploratory study to learn more about Caucasian, African-American and Latino community members' ROR attitudes. We examined the public's general support of new initiatives to increase organ donation rates, their knowledge about donation after unexpected cardiac arrest, what fears and concerns they had about ROR and organ cooling for themselves and in contrast to standard deceased donation, whether they would support organ cooling occurring with and without consent, and whether they would donate organs in the case of an unexpected cardiac arrest. We also explored whether there were differences in these attitudes by race. We conducted seven 90-min focus groups with 70 community members in St. Louis, MO, between January 2008 and March 2008. We divided groups based on race and whether individuals had consented to organ donation (i.e. signed their driver's license indicating that they wanted to be an organ donor or were part of a donor registry) since studies indicate that diverse groups are less willing to openly reveal their opinions (26Krueger RA. Moderating focus groups. Thousand oaks, CA: Sage, 1998.Google Scholar). Of the seven groups, four groups involved Caucasians (19 who had consented to donation, 18 who had not), two groups involved African-Americans (5 who had consented to donation, 15 who had not) and one group involved Latinos (13 who had not consented to donation). Individuals were eligible to participate if they were between 30- and 60-year old (to reflect the demographics of likely ROR donors), were willing to discuss death and organ donation and were able to read either English or Spanish. Community members were recruited using printed flyers distributed in parking lots, health clinics, and in front of the Department of Motor Vehicles and ads in free newspapers and on the Internet. All ads were developed in both English and Spanish. We offered participants $35.00 for participation. The protocol for this study was approved by the Institutional Review Board (protocol #15031). All focus groups were led using detailed interview guides developed by the research team. To guide discussion about this complex topic, two scenarios—a brain death and an unexpected cardiac death scenario-were presented during the focus group (Table 1). After each scenario, participants were asked whether they thought they would be eligible to donate organs, whether they would be willing to donate organs, and whether they had any concerns about donation in such a situation. After we recorded their general attitudes, we used fact sheets to educate them about what actually occurs in such scenarios and repeated the questions to enable the focus group participants to provide a second, educated opinion about ROR issues of interest (Table 1).Table 1Focus group vignettes and fact sheetsStory 1: Brain Death. Imagine that you were in a car accident and suffered severe head injury. Paramedics came and took you to the hospital where you lapsed into a coma. You could not breathe on your own, so you were put on life support.1Here and in the questionnaires the term 'life support' was used following pilot testing, which revealed that the term 'mechanical ventilation' confused some participants.A physician did everything possible to get you out of the coma, but nothing would work. After 2 days in the intensive care unit, a physician determines that you have permanently lost all brain functions and pronounces you dead while you are still on life support and your heart is still beating.Story 2: Cardiac Death.Imagine that your heart suddenly stops beating while you are at home. An ambulance arrives and a paramedic tries to get your heart beating again on the way to the hospital emergency room. At the hospital, an emergency physician continues to try to save you; however, your heart does not start beating again. After 20 min, the physician pronounces you dead.Fact Sheet1. There were 28 923 people who had organ transplants in 2006 in the United States.2. There were 774 people who had organ transplants in 2006 in Missouri.3. There are over 97 000 people who need an organ transplant in the United States.4. There are 1663 people who need an organ transplant in Missouri.5. In Missouri, even if you sign a donor card or join the donor registry, your family will be consulted about your wish to donate at the time of death. Usually, it is the family who gives final consent for organ donation.2During our study the Missouri donor registry was a registry of 'intent'; in August 2008, it became a consent registry.6. In Missouri, if a physician declares you to be 'brain dead' then you have permanently lost all brain functions and your body cannot breathe without life support. Legally you are dead, even though your body might be kept on life support.7. At present in the United States, over 90% of all deceased organ donation involves individuals declared dead using brain criteria. This is because such individuals are kept on life support, and this keeps other organs (such as kidneys) alive and healthy for transplantation.8. At present in Missouri, if a patient's heart stops beating unexpectedly, he or she cannot donate organs because the organs cannot be kept healthy for transplantation.9. About 95% of people whose heart suddenly stops beating die before they reach the hospital.10. Most people whose heart stops beating do not have family members present at the time of death. So family members are not usually able to give permission for organ cooling.Facts about Organ CoolingIf a person is not on life support when he or she dies, then organs like the kidneys and liver must be cooled quickly or else they will die and they cannot be transplanted. In order to cool organs, a physician surgically inserts a tube in your body to pump cold fluid into your belly. The fluid surrounds your kidneys and liver, keeping them cool.If a family decides against organ donation, then the tube and the cold fluid can be removed from the body before it is sent to the funeral home.1 Here and in the questionnaires the term 'life support' was used following pilot testing, which revealed that the term 'mechanical ventilation' confused some participants.2 During our study the Missouri donor registry was a registry of 'intent'; in August 2008, it became a consent registry. Open table in a new tab Focus groups were conducted at public libraries throughout St. Louis City and County to increase the likelihood of a racially and economically diverse sample. A psychologist (A.D.W.) led the English-language focus groups, with the principal investigator (J.M.D.) present to answer specific ROR-related questions. The Spanish language focus group was conducted by a Latina ethicist (A.S.I.). Focus groups lasted approximately 90 min and were audiotaped for transcription purposes. Before and after the focus group, participants were asked to complete a questionnaire. The prefocus group questionnaire consisted of 13 items: 6 demographic items; 3 items addressing personal experience with organ donation; and 4 Likert-type items addressing attitudes toward increasing rates of donation and capturing their naïve assumptions about donor eligibility following a determination of death using neurological and circulatory criteria. The post-focus group questionnaire consisted of 13 Likert-type items that covered the same themes as the focus group guide (seeTable 3). The questionnaires were piloted with six community members using cognitive interviewing to ensure that the complex medical items were clearly understandable to lay people (27Willis G. Cognitive interviewing: A tool for improving questionnaire design. Thousand Oaks, CA: Sage, 2005.Google Scholar).Table 3Community members' donation attitudes after focus groups (N = 70)Agree %Unsure %Disagree %Brain death attitudesIf I die from losing all brain functions, I would want physicians to keep me on life support until they determine my organ donation wishes.81712If I die from losing all brain functions, I would want physicians to keep me on life support until they reach my family to ask permission for donation.66727If I die from losing all brain functions, I want to donate my organs for transplantation.86113If I sign my donor card, I fear that physicians might do less to save my life if I am in a coma while on life support.271954Cardiac death attitudesIf I die because my heart unexpectedly stops beating, I would want physicians to cool my organs until they determine my organ donation wishes.81109If I die because my heart unexpectedly stops beating, I would want physicians to cool my organs until they reach my family to ask permission for donation.701317If I die because my heart unexpectedly stops beating, I want to donate my organs for transplantation.84124If I sign my donor card, I fear that physicians might do less to save my life if my heart unexpectedly stops beating.291357General organ cooling attitudesI think routine cooling is a good thing because it could help more people get organs who need them.801010I would support a law that permitted routine organ cooling, even in situations where we do not know a deceased person's donation wishes and the family was not present.72720I think organs should be cooled only when donors or their families first give permission.2Percentages not totaling 100% are due to the rounding error.3912492 Percentages not totaling 100% are due to the rounding error. Open table in a new tab Focus group audiotapes were transcribed verbatim. Two investigators (J.A. with J.D.) manually coded the presence of each theme across transcripts and selected quotations that illustrated key themes emerging throughout. Spanish quotations were translated into English. Using SPSS, frequency and cross tabulation data were compiled from our pre- and post-focus group questionnaires. All written responses to open-ended items were collated, coded and frequencies calculated. Focus group participants had a median age of 43 years and were more likely to be female (63%) (Table 2). Caucasian participants were significantly more likely to be college graduates than African-American or Latino participants (67% vs. 20% and 31%, respectively, p < 0.001) and to have indicated that they wanted to be organ donors (33% vs. 15% and 0%, p < 0.05). Latinos were significantly more likely to be married or living with someone (92% vs. 53% of Caucasians and 50% of African-Americans, p < 0.05).Table 2Community member demographicsDemographic dataCaucasians (N = 37)African-Americans (N = 20)Hispanics (N = 13)Age (Median years)444342Gender (% Male)364039Married or living with someone (% Yes)*p < 0.05;535092Highest level of education completed**p < 0.001. + = Lower than our expected consent rates given that 51% of our Caucasians participated in the 'consented todonation' groups and 25% of our African-Americans participated in our 'consented to donation' group.• High school or less (%)63554• Some college (%)284515• College graduate (%)672031Have you signed your donor card or informed someone at the Division of Motor Vehicles of your wish to donate? (% Yes)∗33+15+0Have you ever been in a situation where you have been asked to donate a family member's organs? (% Yes)1450Has any close family member donated their organs (% Yes)221015Do you know someone who needs an organ transplant? (% Yes)141015* p < 0.05;** p < 0.001. + = Lower than our expected consent rates given that 51% of our Caucasians participated in the 'consented todonation' groups and 25% of our African-Americans participated in our 'consented to donation' group. Open table in a new tab Prior to our focus groups, the majority of our participants believed that healthcare providers (74%) and the government (69%) should do more to increase organ donation, and 34% of the participants designated themselves as donors. Not consenting to donation usually did not indicate a lack of support for organ donation. For example, none of our Latino participants had consented to donation by signing a donor card or joining the registry; yet, in the prefocus group questionnaire, most thought healthcare workers (92%) and the government (85%) should do more to promote donation. In the prefocus group survey, compared to Caucasians and Hispanics, African-Americans were significantly less likely to believe that healthcare providers should do more to increase the number of organs available (65% agreed vs. 72% of Caucasians and 92% of Latinos, p < 0.05). Both African-Americans and Hispanics were also more concerned that if they signed their donor card and their heart stopped beating, physicians would do less to save their life. During the focus groups, they were also more likely to want their family members to serve as their advocates and decision-makers. Before the focus group, most participants believed that they would be eligible to donate organs if pronounced dead following brain death (79%) or unexpected cardiac arrest (76%), assuming that they or their families consented to donation. After informing individuals that Missouri does not use an ROR protocol and that individuals are not eligible to donate following unexpected cardiac death, some participants expressed surprise and confusion: I guess I'm a little confused now because most of the time when we suffer a brain death or a cardiac event, we're not going to be in a hospital where they can intervene immediately. So it sounds like the threshold for organ donation is really small. (Latino, No signed consent) I had no idea that a heart attack basically negated the opportunity to become a donor. So I can see why there's a massive shortage because a lot of deaths occur through heart attack. (Caucasian, No signed consent) Participants who had consented to donation expressed frustration that their donation wishes could not be honored in the situation of an unexpected cardiac event: Sounds like it's against my wishes. I'm not really concerned about how I died. If I made the decision, it's not so much the circumstances—I'm done with them, I'm done with them. (Caucasian, Signed consent) I feel a little cheated. (Caucasian, Signed consent) After hearing the cardiac death scenario, several participants expressed concerns about the length of time resuscitative efforts should occur before someone is officially declared dead in this situation: I know it's probably standard procedure to after 20 minutes go ahead and stop … but, I mean … what if you just had that one doctor who just didn't want to quit and after 30 minutes he brings you back? (African-American, Signed consent) I think they're minimizing again. Twenty minutes has just like got to be the least amount of time possible and I just think they're minimizing it. I think they should go 40 minutes. (Caucasian, No signed consent) Some concerns hinged on a lack of understanding of the difference between a 'heart attack' and cardiac arrest and mistaken beliefs about the parameters for successful resuscitation. However, no one expressed concerns that some one actually is dead when circulatory and respiratory functions are irreversibly lost. This contrasted sharply with attitudes toward a standard 'brain death' or a neurological determination of death. While most concerns about brain death were based on misinformation (e.g. confusing it with a persistent vegetative state) and accordingly the concerns disappeared when we provided accurate information, a few participants had doubts about the concept. For example, one participant said: I think that as long as the heart is beating, the person is alive-there is life. (Latino, No signed consent) Following the focus groups, 72% of our participants expressed support for a law permitting routine organ cooling and 81% agreed with the statement, 'If I die from cardiac arrest, I would want physicians to cool my organs until they determine my organ donation wishes' (Table 3). Although African-Americans were more likely to agree that organs should be cooled only when donors or their families first give permission (60% agreed vs. 29% of Caucasians and 39% of Latinos), the difference was not statistically significant (Table 4).Table 4Racial groups' organ donation and ROR attitudes and behaviorsCaucasians (N = 37)African-Americans (N = 20)Hispanics (N = 13)Agree (%)Unsure (%)Disagree (%)Agree (%)Unsure (%)Disagree (%)Agree (%)Unsure (%)Disagree (%)General organ donation attitudes: pre-focus groupThe government should do more to increase the number of organs available for people who need them.6128117020108588Healthcare providers should do more to increase the number of organs available for people who need them.1Chi square significant at p < 0.05.722806520159280ROR attitudes: post-focus groupIf I sign my donor card, I fear that physicians might do less to save my life if my heart unexpectedly stops beating.1Chi square significant at p < 0.05.121277451045541531I think routine cooling is a good thing because it could help more people get organs who need them.831167010208588I would support a law that permitted routine organ cooling, even in situations where we do not know a deceased person's donation wishes and the family was not present.6992375101577023I think organs should be cooled only when donors or their families first give permission.291160601030391546ROR behaviors: post-focus groupIf I die because my heart unexpectedly stops beating, I would want physicians to cool my organs until they determine my organ donation wishes. (Post-focus group)8311675151085015If I die because my heart unexpectedly stops beating, I want to donate my organs for transplantation. (Post-focus group)8993652510100001 Chi square significant at p < 0.05. Open table in a new tab The following statements represent views commonly expressed for participants who supported organ cooling: You're always asked when you get your license, 'do you want to be an organ donor?' So right there you're making your decision. And if you're saying yes then I think you're agreeing to this (organ cooling). (Caucasian participant, No signed consent) I like it because it increases the opportunities for us to help people who otherwise aren't going to have any help. … It's not going to hurt my body to have my abdomen distended for a while. (Caucasian participant, Signed consent) However, others expressed reservations about how the family might feel, offering comments such as: But you know when somebody dies and the family comes in to visit the body, it's still warm. I wouldn't want to come touch no cold body (African-American participant, No signed consent) The participants were mixed in their attitudes about whether organ cooling should occur without the families' consent. Even though 72% of our participants expressed support for a law permitting routine organ cooling, 39% agreed that cooling should only occur when donors or their families give permission (Table 4). Most people in support of organ cooling without consent offered sentiments like the following: I think it's a good idea. Because sometimes it takes hours to get a hold of a person's family. And it's just one more opportunity. I mean, they're already distorting the person's body working on them anyway. I mean, what's one more little incision and a tube? (Caucasian participant, No signed consent) The fact that a person has not signed a card does not mean that the patient did not want to donate. They might have had doubts, needed more knowledge and information about what happens. So, I think that yes, you should cool the body and then talk with the family. (Latino participant, No signed consent) However, others had concerns about organ cooling without consent based on religious pluralism and mistrust: What if somebody, say has an opinion, or a feeling like there's people out there who don't get vaccinations and you know it saves lives. But they don't do it because it's against their religion. So then you go ahead and inject this person with this solution and then their family comes in and they say, 'That's against our religion that you tried to do these things in the first place.' (Caucasian participant, No signed consent) I'm kind of agreeing with the safeguard method [of asking families]… remember back in the eighties … you heard this rumor that especially with the younger, 16- or 18-year-olds, bodies were still in healthy prime but they got shot up, shot to death. And there was that nasty rumor going around that they were purposely letting young boys die so that they could recover the heart, the lungs, the kidneys, because these were basically healthy children who hadn't had another disease. And there was a rumor that the health care workers were checking the box on the back of their driver's license. (African-American, No signed consent). Participants were equally like to support donation after brain death and cardiac death. Eighty-six percent stated a willingness to donate following a neurological determination of death, while 84% stated a willingness to donate following a circulatory determination of death (Table 3). There were no statistically significant differences between racial groups on these questions (Table 4). To our knowledge, this is the first exploratory study in the United States on the attitudes and knowledge of the public regarding ROR. Most community participants believed that ROR or something like it already occurs. They were surprised to learn that they could not currently donate organs if they died following an unexpected cardiac arrest. While organ procurement organizations (OPOs) might perceive ROR as new and somewhat radical, the public seems to believe that victims of unexpected circulatory arrest are already eligible donors. In addition, after being educated about ROR, 84% of the public said they wanted to donate. However, qualitative and quantitative data also revealed that the public does have concerns and questions about ROR. Although individuals had fewer concerns about the concept of a circulatory determination of death than with brain death, they still wanted to ensure that successful resuscitation was definitely not possible before death was pronounced. Much of the support we found for ROR and donation following brain death depended upon education provided within the focus groups regarding the difference between a heart attack and cardiac arrest and between a PVS and brain death. Once actual definitions of each were provided, community members were reassured and more likely to consent. This reinforces the need for education regarding organ donation protocols; in the case of ROR, it is important that this occur prior to the occasion of death, as the timeline is significantly tighter than with standard deceased donation. Further research is needed to explore the prevalence of these concerns and the impact of education in a larger sample of the general public. The IOM refrained from recommending special resuscitative guidelines in the context of ROR that go beyond standard best practices (2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). However, given the concerns expressed in our study, minimum standards for resuscitation may need to be established and communicated to the public. Establishing review boards that retrospectively examine cases of ROR to ensure that all policies and procedures were followed and that the donor was not denied treatment could also serve to provide oversight and transparency about what actually occurs during procurement, something that many minority community members believe is lacking in the area of organ transplantation. Participants were divided on whether routine organ cooling should occur in cases where the individual has not joined the donor registry and without expressed donor or family permission. Given that a large minority of participants (39%) agreed that cooling should occur only when the potential donor or donor family has given permission, it might be wise for OPOs to proceed in this cautious manner, even though the IOM suggested that routine cooling is permissible (2Institute of Medicine. Organ donation: Opportunities for action. Washington, DC: National Academies Press, 2006.Google Scholar). Such an approach could prevent resistance to ROR among persons who do not wish to donate, who fear that they will not receive adequate care if they have consented to donate or who prefer family members to make decisions regarding post-mortem interventions. There were limitations to this exploratory study. Our sample size was local, modest in size and 63% female. Similar studies should be conducted in other metropolitan areas that have emergency response systems in place that would enable the development of an ROR program. Future research might explore family attitudes to ROR by including individuals who would not necessarily qualify for ROR but who have potentially eligible family members. Such research also could examine local donor awareness campaigns to measure any effect such efforts might have had on attitudes toward ROR. (No such campaigns had occurred in our OPO prior to our study.) Moreover, we need studies that examine new variables such as the feasibility of ROR from the perspective of logistics, staffing and cost. Finally, given that pilot programs are beginning in the United States, we need data from actual ROR donor families and healthcare providers regarding their experiences, including the effect on families informed of an unexpected death and an ROR protocol at the same time. Moreover, largely due to the modest size of the Latino population in the St. Louis area (2–3%), despite running ads in Spanish and offering cash payments for participation, we were unable to recruit participants who had joined the registry. On the one hand, this perhaps makes the support we found among our Latino participants all the more impressive. On the other hand, our findings need to be replicated in a region with a larger and more diverse Latino population. However, this early study shows high levels of public support for new initiatives to increase the rates of organ donation, in general, and for ROR programs, in particular. This was true even though the majority of our participants had not joined the Missouri donor registry. The discrepancy between the relatively low percent on the registry and the relatively high percent who expressed support for organ donation within our hypothetical scenarios actually reflects a pattern within our local population: far more people agree to donate organs in the actual event of a family member dying than join the registry. With data suggesting the potential to at least double the pool of available deceased kidney donors if ROR programs were implemented—even in the cautious manner we have recommended (16DuBois JM Increasing rates of organ donation: Exploring the Institute of Medicine's boldest recommendation.J Clin Ethics. 2009; 20: 64-78Crossref PubMed Google Scholar)—ROR programs should continue to move forward while addressing the public concerns revealed here. We thank the Greenwall Foundation, all of our participants and Mid-America Transplant Services for their contributions to this study. We thank Karina Benabe for research assistance with the Latino focus group. This project was supported by a bioethics research grant from the Greenwall Foundation. The lead author was a member of the 2006 Institute of Medicine (IOM) Committee on Increasing Rates of Organ Donation and the Greenwall Foundation co-sponsored the work of the IOM Committee. None of the authors has a financial conflict of interest related to the project described in this paper.