Proposal to Study the Use of Faith Based Organizations To Increase the Rate of Organ Donations
The number of preventable deaths that occur yearly when patients die while on a transplant list is staggering when it is considered that they are caused largely by what may be little more than a sense of disquietude concerning the procedure. People die because there are not enough donor organs to go around. Even in the 21st century people hold to ancient taboos and feel unease over what they dimly perceive to be a forbidden act. This problem is exacerbated by personal religious beliefs and the myth that organ donation equates to desecration of the dead. This is most unfortunate yet still the need for donor organs outpaces the number available for transplant, leaving thousands to die needlessly. Hess (2007), assistant Executive Director for Information Technology at the United Network for Organ Sharing, states, tens of thousands of people need organ donations each year, and just a small percentage of them get one. There is a desperate need to increase the donation of viable organs. Obviously there are ways to increase the donor organ rate, and some might well be acceptable to the majority of Americans, while others might not. The United States might adopt a law similar in scope to those of other nations, such as China, with have enacted an implied consent law. Those people who do not carry a signed card saying they do not wish to be donors are considered to have consented. It has largely solved Chinas donor shortage problem. It has been suggested that organs be bought and sold. This would likely entice some of those who are reluctant to donate, by offering cash inducement.
Yet, even in a capitalist society, it seems distasteful, and certainly it would give the wealthy first call on virtually every available organ. If organ donation is not believed to be fair, and Americans begin to suspect that organs would go to the highest bidder, there might well be a backlash, and the number of available organs would diminish. Americans have demonstrated that they will not stand for celebrities or the rich being able to buy their way to the top of the transplant list. This research paper will seek to determine if there is a way to improve the numbers of available organs by means of a specific public education program. Said Laura Siminoff, Ph.D., of Case Western Reserve University School of Medicine in Cleveland, The major factor limiting the number of organ donors is the low percentage of families who consent to donation (Transplant News 2001). Conventional wisdom says that education is the key to increasing organ donation, while presently less than half of eligible donor organs are ever donated. A 1995 study of families of donor-eligible patients found that 86.5 were asked to donate but only 47.3 gave consent. Other studies have confirmed these findings (Lifeshare.org 2009). Almost 60 of the over 81,000 patients awaiting a donor organ will die without receiving one (Lifeshare.org 2009). Past studies show that it is difficult, if not impossible, to raise the donor awareness much beyond current levels, which are less than 50 of the eligible organs. Barring a change in national health policy and law, there seems to be little to be done to facilitate an increase. These studies, some of which were conducted by Laura A. Siminoff, Nahida Gordon, Joan Hewlett, and Robert M. Arnold (2001), and reported in the Journal of the American Medical Association (JAMA) indicate that while education is the only effective method to increase organ donations, it is limited, and seems to have a cap of less than 50 effectiveness. The purpose of this paper is to add to the research knowledge gleaned from such studies, and bring new information to the table, relative to why those in control of the organ will not readily donate it when it is no longer of any use to their loved one or themselves. This paper proposes to study the education of the public, with an eye toward increasing awareness of the need for donor organs. Churches, as well as hospitals and clinics, should be a major venue for education, in the form of posters and brochures, and the public should be saturated with information regarding the mechanics of the donor process so that it is not shrouded in mystery. Church officials should be encouraged to let the faithful know that organs will not be needed in an afterlife. A national registry is in place at this time, but the problem with this program is that while a person may have registered, and be willing to donate his or her organs, once that person is dead they no longer have care, custody, or control over their body. It becomes the property of their next of kin and is subject to the wishes of that person. In their grief they may, and frequently do, refuse to honor the donors request. They are under no legal obligation to do so (Office of the Judge Advocate General, 1999). Since religion is fundamental to Americans in the matter of life and death, education should be directed toward religious institutions and avowed religious groups within the population, specifically targeting them for indoctrination.
Problem
Thousands of people die unnecessarily each year while awaiting a donor organ. There is no logical reason for anyone to refuse to donate a loved ones organs, yet the majority of people will not allow the harvest to occur. Children in need of organs constitute a separate problem, not only because of their youth but also because of a particular vulnerability not seen in adults waiting for organ transplant. Children awaiting heart transplant reportedly die at different rates from those of adults, and depending on their ethnicity. White children in the United States die at a rate of 14 while on the waiting list, while black children have a 60 greater risk of death, Hispanic children have a 50 greater risk of death, and Asian children have between 100 and 130 greater risk, in comparison to white children. The study reporting these rates of risk, conducted over an eight-year period, ending in 2006, by the United Network of Organ Sharing, appeared on HealthDay, a page of ABC News online in a story by Robert Preidt (2009). It further reinforces the belief that human beings need to be more willing to donate organs that will otherwise only rot and reduce to dust. Of the estimated 100,000 people waiting for a donor organ, 18 will die each day without receiving one. Someone is added to the organ transplant list every 12 minutes (Core n.d.). To further complicate the situation, those who are asking for permission to harvest the organs of a loved one are doing so while the heart of the loved one is still beating. The relatives or loved ones are often under the impression that the victim is still alive and might miraculously recover since the heart is still beating. Therefore the requesting official is not only asked permission to remove vital organs, but is, in effect, the first to deliver the death message to the family at the same time.
Diseases such as kidney failure and less publicized illnesses, such as pancreas and bone marrow diseases (sickle cell anemia), along with liver and lung failures, cause a great deal of human suffering that, in many cases, can be alleviated by a donors gift of an organ or marrow, tissue, and corneas. While heart transplant is not considered a cure for end-stage heart disease, due to the fact that it is 100 fatal in itself, and is more a delaying tactic than a cure, designed to give the patient added time to live, other organ transplants are considered to be cures for particular illnesses.
Those people waiting to be transplanted are generally disabled and do not contribute to society even if they are not a drain on national resources. Doubling the number of available organs would, in theory, put double the number of disabled people back into productive lives, which is an important social issue, even if such productivity is limited to a grandparent being able to baby-sit their grandchildren or water their garden. It would free up dialysis machines and increase the number of available hospital beds.
For the end-stage heart disease patient the only known treatment is heart transplant. There is a device called Left Ventricle Assist Device (LVAD), which is used as a bridge, to keep patients alive until a donor heart becomes available. This device is implanted in the body cavity, next to the heart, and then plumbed into the heart to take over the work of the left ventricle. It is as invasive as a heart transplant and costs about the same for the surgery and a year of follow-up treatment. The best-case scenario involving the end stage heart disease patient is that he or she will get the needed heart before it is necessary to take more drastic measures to save the life. Yet with the shortage of donated hearts, all too often the patient is left with the option of immediate death or having the LVAD implanted, at a cost of approximately 222,465, without factoring in the cost in human suffering. The pain and recovery time is equal to the heart transplant itself, so the patient, in effect, gets the same surgery twice (Lock 2009). The lack of available organs causes needless deaths, and permits some diseases to progress and do grievous harm to humans. The lack of available organs causes the disabled to remain disabled when they do not have to be, and it causes incalculable waste of money by increasing the medical expenses of those waiting, leading to a shortage of hospital beds and that cost is ultimately paid by the general population.
The popular theory is that people vote with their wallet. They tend to vote not for what is happening on the other side of the planet, irrespective of the global economy. They are concerned with what is happening financially on their street. The cost of a kidney transplant is roughly equivalent to the cost of one year of kidney dialysis treatment, yet is good for life. It is a bargain, and people should be educated to that fact. Reports indicate that people are unclear as to the subtleties of organ donation. Some loved ones have the idea that they will have to pay for the removal of the donated organ or incur other expenses, which is only a small part of the overall lack of understanding in regard to organ donation.
A paradox exists which HCPs know, but do not totally understand, that while the population of the United States is overwhelmingly in favor of organ donation and transplant, there is still a serious shortage in the number of donated organs. It would appear that people accept the idea of organ donation with enthusiasm so long as it does not personally involve them or a loved one. There is an obvious double standard at work. People wholeheartedly embrace the idea in principle, but reject it in practice when it comes to having to make such a decision in regard to a loved one. Past studies show that education is the single most import factor in increasing the number of donated organs, but the Siminoff et al. (2001) study makes no attempt to ascertain what part religious doctrine, or perceived doctrine have in a decision not to donate.
Although the first organ transplant was performed in 1954, when a man donated a kidney to his identical twin brother, the lack of an effective immune suppressant made organ transplantation problematic until the discovery of Cyclosporin, a powerful immune suppressant, in the 1980s, when a new era of transplant surgery began. In 1986 alone, for example, nearly 9,000 kidney transplants were performed in the United States, with a greater than 85 percent survival rate for the first year (PBS.org 1998). It was at this time that demand began to outpace the donations and people began to die while waiting for an available organ. The medical profession understood that a public education program was needed to make the general public aware of the program as well as the need for donor organs. To date education programs are deemed the most effective method used to increase the willingness of next of kin to donate the organs over which they have control. Occasionally new theories will arise, such as a call for the lobbying of Congress for an implied consent law or the creation of a national registry that will have the authority to lay legal claim to the organs of those who have agreed to donate before their deaths.
Review of Research and Theories
This paper examines the results of the latest study conducted by doctors Laura Siminoff et al. (2001) as reported in JAMA. The purpose of this study was to explore factors associated with the decision to donate among families of potential solid organ donors (Siminoff et al. 2001). Specifically it was designed to determine factors in the decision making process involving such donation of organs. After exhaustive study in areas that would appear to be target rich for the procurement of donated organs, the conclusion is that public education is the key to increasing the number of willing donors, and that specific steps can be taken which will increase the willingness of the family to donate. The attitude of the public must be modified in order to gain more acceptance than is presently enjoyed. Their study further concludes that there are specific steps which can be undertaken by Health Care Professionals (HCP) and Organ Procurement Organization (OPO) staff to in order to maximize the opportunity to persuade families to donate their relatives organs (2001).
The Siminoff et al. (2001) study was conducted by telephone with health care professionals, review of charts and other data, and by face-to-face interviews with concerned parties. Organizations which deal with organ procurement were also queried. Univariate analysis led to the conclusion that there is more than one factor involved in the familys decision-making process. The multivariable analysis of associated variables concluded that that family and patient sociodemographics(ethnicity, patients age and cause of death) and prior knowledgeof the patients wishes were significantly associated with willingnessto donate Socioemotional and communicationvariables acted as intervening variables (Siminoff et al. 2001). Those families with more contact with knowledgeable staff concerning more topics involving more conversations had a better rate of willingness to donate.
Propaganda is a tool of rhetoric, and until a relatively short time ago the word did not carry a negative connotation. Ad campaigns are used by virtually every organization which seeks to make its position known to the world. Since the Siminoff study under scrutiny here has concluded that education is the single best method by which to increase the number of donated organs, this proposal seeks to study the effects of an orchestrated ad campaign using propaganda, but which the study does not address, and that being one directed at the overtly religious populace. Jiang and Whitney (2009), writing in the Harvard Crimson, described a new ad campaign in Massachusetts which will use religion to facilitate the passage of ecological legislation and educate the people of the state. Their article, titled Using Religion to Go Green, reported that bible in hand, Reverend Robert J. Mark, a McDonald Fellow at Memorial Church, stood in front of the Massachusetts State Legislature and spoke to a motley crowd of similarly-attired reverends, climate activists, and several Boston Mounted Police (Jiang and Whitney 2009). Reverend Mark had come to kick off the campaign for the environment. He drew important area clerics because of his religious affiliation, making a clear declaration that the cause for which he advocated was one favored by God. We are taught all creation is sacred and holy, Mark said, while speaking to the crowd which included numerous Harvard affiliated reverends and students We have to protect creation and be stewards of Gods creation (Jiang and Whitney 2009). It seems reasonable to link organ transplant procurement program to the protection of human creation as well.
There is little doubt that religious fundamentalists leaders understand the power they wield. According to Gross (2006) religious fundamentalists have orchestrated a campaign to replace science with religious myth. Certainly this was seen in the medieval era, when scientists were excommunicated or put to death for espousing ideas contrary to biblical teaching. Little has changed in the intervening years. Gross (2006) states
In the 1990s, the state Republican platforms in Alaska, Iowa, Kansas, Oklahoma, Oregon, Missouri, and Texas all included demands for teaching creation science. Such platforms wouldnt pass muster in the election, Miller says, but in the activist-dominated primaries, they drive out moderate Republicans, making evolution a political litmus test. Come November, the Republican candidate represents a fundamentalist agenda without making it an explicit part of the campaign. (2006)
Americans, according to studies, are willing to simply reject scientific theory the conflict that exists between religious tenets and certain life-science issues is being used as a political tool by the fundamentalist faction of the Republican Party, according to Gross (2006). While it may seem like an oxymoron, there is nothing to prevent science from using every tool at its disposal, including myth, so long as it is within reason and ethical consideration, to advance the cause of medicine. The fundamentalist leadership can produce extraordinary results if they can be convinced that it is expedient to advance the cause of organ donation.
Political parties have been successful in this country by finding out what the more zealous of Christian groups demand, and then tailoring a campaign which promises to adhere to the dogma espoused by the demagogues of the cult in question. Christianity is a powerful force in this country, playing kingmaker and dictating foreign and economic policy. A campaign directed at organ donation would have a good chance of being successful if the leaders of both mainstream and evangelical Christian leadership publicly endorsed it. This study will attempt to evaluate the merits of a campaign directed at the religious and moral aspects of organ donation. The brochures and posters could have a catchy and memorable theme, somehow relating to the idea that donation is a Christian duty and a moral obligation. One possible line could play on the idea that organs should not be taken to heaven, since God knows how badly they are needed on Earth.
It is clear that religious persuasion, particularly in areas that deal heavily in questions of ethics and human morality, can be an effective tool. The surveys conducted to date deal more with overall education, relating, in essence, more to the nuts and bolts of the procedure than to its benefit to another human being. The study proposed in this paper intends to address whether the religious, as well as moral, aspects of the act of donating human organs to a fellow human can be emphasized to produce a greater degree of success than has been seen to date. The study showed that when HCPs were more perfunctory, stating that they were required to ask about the possibility of organ donation, there were fewer donations offered than when the HCP discussed how the donated organs could help others. It would appear that this is an important aspect of the process of the making the request, and coupling it with remarks from religious leaders and church dogma seems a logical next step.
Hypotheses
Due to the number of people in the United States who consider the country to be Christian in nature and scope, appealing to Christian ethos, morality, and charity will result in an increase in the number of solid organ donations. The prediction is that many of the refusals are caused by a belief that the Christian church does not condone such an act that would involve any sort of mutilation of the dead. Ad campaigns and informational talks will ease the discomfort levels that humans feel toward the idea of mutilating someone they love, resulting in a higher percentage of donors than is now enjoyed. While many, if not all, states offer willing donors an opportunity to include the information on their drivers license, simply signing on to such a service means little once the signer is dead. It is no guarantee that the wishes of the deceased will be honored. Thus, some states have passed laws that supercede the old common law which states that once a person dies they no longer have ownership of their person. Yet this attempt to get around the wishes of the family are impractical and unworkable in real life situations. The idea of an HCP arguing with a grieving family over the legal nuances of ownership is odious at best. It is incomprehensible to think of removing organs by force or intimidation, so in the end, the new laws change nothing (Stickney 2002). Once again it seems that education and re-education is the only viable method by which donations can be increased.
Methodology
It is important to be able to make comparisons between the data from the Siminoff study and the one proposed herein. Therefore the methodology must be similar. Utilizing a variation of Grounded Theory, the study will begin without a preconceived notion as to the outcome, albeit, there are hypotheses in place, which would seem to contravene that particular rule of formal Grounded Theory (Simmons 2009). Yet Grounded Theory is possible, even with a preconceived notion, by simply factoring in the bias of the interviewer, so long as that bias does not leach into the Grand Tour question, which is the main question from which all others will spring. This is not to say that the Grand Tour question is written in stone. It can be changed from one interviewee to the next if it is perceived that the question is not as productive as it could be. Its purpose is always to lead the interview logically and smoothly into the next area of questioning.
The participants will largely be the same pool of interviewees as seen in the Siminoff study, with the exception of those who are polled in churches and other religious gatherings. Also, religious leaders will be polled as to what they perceive to be Christian policy on organ transplantation. The Siminoff study compared the effectiveness of HCPs and OPOs, which will likewise be compared in the proposed study, and then will further be compared to the effectiveness of having a member of clergy speak to the family. Organ procurement groups such as the Southwest Transplant Alliance offer a speakers bureau service to civic groups. These speakers, virtually all transplant recipients, are a primary source for information to be delivered to the public. This organization would be willing to furnish speakers at local churches, where afterward it would be possible to survey all willing audience members. According to the Southwest Transplant Alliance (STA) (2005), none of the worlds major religions have any official policy against organ donation, and all, for the most part, encourage their members to donate, but still consider it a personal decision (2005). Yet this idea that the decision is best left to the individual is perhaps more of a sticking point that is generally realized. Churches do not agree that sin is left up to each individual. While they may pay lip service to the idea that tithing is up to the individual, every member of the church is told without ambiguity that it takes money to keep the lights on. While the faithful are not sent a bill in most cases, they are expected to declare an amount that they can live with, and they are expected to honor that bequest. So the idea that good works are not within the purview of the church is counterintuitive. The congregation should be led to understand that organ donation is not only free and beneficial to their fellow citizens, it is a charitable act of kindness that God will smile upon.
Because of time and cost constraints, participation will be limited to 100 interviewees in the transplant clinic, in the emergency room, and the intensive care units where permission can be obtained. No inducement will be offered, but printed brochures will be given out. There is not always a donation made each time someone agrees. People sometimes change their mind, but for purposes of this study, it will be assumed that they are willing to follow through with the donation if they say yes to the request.
Grounded Theory calls for the use of a Grand Tour question, which will come after asking their religious affiliation. If they have none, they will be treated as Christian for the purpose of the study. The Grand Tour question will be, Are you familiar with the policy of your faith, relative to donating our organs once we pass The response to this will lead to the next question, which is not prewritten, and will only be determined after hearing the response to the original question. These questions will lead to the formal request for the organ donation. Still, the response to each question will be recorded, preferably with an innocuous recording device, and the details of the interview will be carefully noted. Should this data indicate there is a need to interview outside sources, that can be accomplished in follow-up. As an example for the need for follow-up, it might be that a professor of a Divinity School is teaching that the bible forbids Christians to donate organs on pain of damnation. It is unlikely, but should it occur, then an interview would be requested with said professor, not to challenge him, but rather to probe his thinking on the matter and interview him.
Through the constant comparative method, the researchers data will be under scrutiny at each juncture, be it in the initial interview or during the coding of the data. By constant comparison it is expected that a theory will begin to emerge, and perhaps there will be a new and obvious hypothesis to appear within the notes. When the data notes become saturated, meaning that there is redundant information accumulating, it will become apparent that some categories can be combined and ultimately there will be a reduction to one idea, which will stand alone as the target theory.
Memo writing, a basic tenet in Grounded Theory, will be utilized in this proposed study. Such memo writing is done as soon as possible after an encounter, while it is fresh. It is not a part of the formal theory, which will emerge from the memos, but will be included in the notes to be read by researchers who might wish to build on the study. Proponents of Grounded Theory liken the memo writing to a form of talking to ones self. Memos allow the interviewer the luxury of expounding on the tack the survey is taking, without committing to any particular theory. However, with that in mind, the memo is not meant to be descriptive. They are only theoretical in nature, and meant to be conceptual to the emergence of the new theory.
The difference between Grounded Theory and other methodologies is that Grounded Theory allows the theory to emerge from the data, rather than setting out to prove a thesis by recording data which agrees with the preconceived notion. The notion, or hypothesis, is that because of the large number of citizens who profess to be Christian, it behooves those in the business of procuring the assent of grieving families to press the idea of organ donation as one duty of a Christian life. Near the conclusion of the survey, a theoretical outline will be written, and from this will come the final theory. This modified version of Grounded Theory was chosen because it is a system that works from the bottom up. It seems more efficient to begin with a premise and allow research to determine what the final theory will be, rather than to set out to prove a given hypothesis.
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