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Organ donation has the potential to save and enhance lives. However, the increasing imbalance between demand and supply for transplantable organs has led to ethical challenges. This research paper discusses some of these ethical challenges in light of the social, cultural, and spiritual issues that deceased and living organ donation raises in different contexts around the globe.
Nowadays we tend to take for granted that organ donation can save and enhance lives. Yet the transplantation of solid and vital organs is a relatively recent biomedical and technological intervention. The ﬁrst renal allograft (a transplant from a donor of the same species) was performed in 1936, but it was not until 1954, when Joseph Murray took a kidney from identical twin Ronald Merrick and transplanted it in his brother, Richard, that the ﬁrst successful kidney transplant was carried out at the Harvard Medical School’s Peter Bent Brigham Hospital (Munson 2002). Since then, the range of transplantable human organs has broadened to include the heart, liver, lungs, kidneys, intestines, and pancreas. With the introduction of powerful immunosuppressant drugs such as cyclosporine to assist in preventing organ rejection, transplantation became increasingly routinized. However, unlike body tissues such as corneas, bone marrow, blood, cells, heart valves, and skin, the demand for solid organs exceeds supply in most countries. This raises ethical, cultural, and social issues on a micro-, meso-, and macro-level scale.
The retrieval of organs for transplantation occurs in two main ways. The option to donate organs is raised by health-care professionals as a component of end-of-life care when a person dies. Alternatively, living persons can donate kidneys, liver segment(s), lung lobe(s), or a portion of intestine or pancreas. In very rare cases, a heart lung recipient can donate his or her healthy heart to someone who is waiting for a heart transplant.
Deceased Organ Donation
The term deceased (formerly cadaveric) donor is the preferred descriptor for persons who have been declared brain dead in the context of a hospital intensive care unit (ICU) and whose organs have been donated for transplantation by family or next of kin. Brain death has been described as a cultural and technological artifact (Lock 2002), the legal criteria and acceptance of which vary globally. The notion of brain death was ﬁrst formulated by an ad hoc committee of the Harvard Medical School in 1968 and has been the accepted clinical deﬁnition of death since then, having been endorsed by a presidential commission on brain criteria in 1981 and formally adopted by most states and many western countries thereafter (Benjamin 2001). Brain stem death refers to the complete and irreversible loss of brain function and occurs as a result of traumatic injury to the part of the brain that controls heartbeat and ventilation. For accomplishing organ donation, mechanical ventilation and other “life-support” measures are employed to maintain the breathing of brain-dead donors until surgical removal of organ(s) of interest for transplantation.
As the demand for transplanted organs rises, low rates of deceased donation in many countries present a problem. The reasons for the organ shortfall are multifactorial. First, the percentage of people in the western world who die in circumstances where they could be deceased organ donors is only 1.2–3 % of all deaths. These statistics reﬂect improvements in road safety, such as wearing seat belts, improved car design, better road layouts, the greater use of motorcycle helmets, speed control and reduced speed limits, as well as advances in intensive care practice which have prevented patients with traumatized brains from becoming brain dead. Meanwhile, the demand for human organs is increasing due to the expectation in developed countries of continued quality of life, even in advancing years. Additionally, progress in transplant surgery has meant more organs can be transplanted and a greater range of conditions can now be treated by transplantation than previously. The increasing imbalance between demand and supply puts pressure on supply side practices, thereby leading to further ethical challenges.
Deceased Donation And Bioethics
Although national surveys and opinion polls demonstrate support for organ transplantation and a willingness to donate, this does not always translate to actual donation. Some countries have legislated “opt out” or presumed consent policies to increase donation rates, with some success (e.g., Belgium, France, and Spain). Presumed consent operates on the basis that all eligible persons are organ donors at the time of their death unless they have speciﬁcally indicated their explicit objection. “Opt in” systems, by contrast, are based on expressed voluntarism and require consent from the potential donor or their next of kin. Detractors argue that “opt out” systems can only work where there is a high level of education and awareness about organ donation. In this view, presumed consent potentially undermines the idea of organ donation as a gift by treating the body as a resource that can be taken without the donor’s knowledge or consultation with their family. The concern is that presumed consent will erode patient autonomy and trust in the health-care system. Many religious groups also express concern about the desacralization of the human body when it is treated as a resource to be harvested as “spare parts” for transplanting from one person to another.
Cultural and religious beliefs also present external barriers to deceased donation, speciﬁcally in relation to the determination of death (i.e., when death occurs), and when it is morally acceptable to retrieve organs from the deceased. Each of the world religions (e.g., Judaism, Islam, Christianity, Hinduism, and Buddhism) has a perspective on deceased donation (Veatch 2000, ch. 1). However, there is often a signiﬁcant disconnection between theological and doctrinal debate permitting deceased donation and lay understanding of religious beliefs stipulating deceased donation as impermissible. For example, beliefs about preserving the bodily integrity of the dead inﬂuence donation rates in countries such as Mexico, where lay understandings of Catholic doctrine require the body to be interred whole to enable resurrection (Lock and CrowleyMatoka 2008). Yet, within Catholicism, a belief in bodily resurrection may simultaneously exist with an emphasis on charity and altruistic acts.
Many western countries accept the legal and medical criteria for the posthumous procurement of organs based on brain death, but the clinical deﬁnition of brain death as a diagnostic category used in medical practice to determine “a moment of death” is not accepted everywhere. Some cultures subscribe to the traditional deﬁnition of death as the irreversible cessation of cardiorespiratory functions. They also share an understanding of death as a process, not an event. For example, brain death was only accepted into Danish law in 1990, alongside cardiorespiratory criteria after a long period of public discussion and debate (Rix 1999). In Denmark, the legally brain-dead organ donor is dead for transplantation purposes and has entered the “death process,” but for Danes, it is cessation of cardiopulmonary function that deﬁnes death in everyday terms.
Studies show that deceased donation in the ICU disrupts the bereavement and grieving process for families confronted with the death of a loved one, thus making it difﬁcult for them to consent to organ donation. Taking organs from a dead person also violates social norms and attitudes which require respect for the dead. Although individuals in western cultures may think of the donor’s spirit as “living on” in the body of the transplant recipient through the donative act or seek solace in the belief that some good may eventuate from catastrophe, many people tacitly reject deceased donation due to the lack of consensus for criteria around the notion of brain death. They may recognize the patient in the ICU context as “socially dead” but not a cadaver. Because the body of a brain-dead person looks and feels alive or asleep and is warm to touch, some individuals have difﬁculty “letting go” and imagine they are allowing hospital staff to cut up or mutilate their loved ones’ body.
In some societies, legislation relating to anonymous deceased donation is complicated by cultural and religious practice. Brain death was enacted in Japanese law only in 1997. This law enables an individual to give advance notice of their willingness to donate upon death, but their family must also approve organ removal before the individual is recognized as medically dead. At the same time, formal gift-exchange rituals exist in Japanese society, and these practices require reciprocation between people who know one another. This conception of gift-giving is not in line with the prevailing view of organ donation as a gift of life. For instance, Part 18 of the European Union Tissue and Cells Directive endorses organ donation as a unidirectional altruistic act (Eurolex 2014). In Japan, however, it would be socially unacceptable to view the donated organ as one way, with no expectation of any kind of return, as is the custom in the United Kingdom or United States (Lock and Crowley-Matoka 2008).
Analogously, a gift-exchange ethic is part of the traditional philosophies of many indigenous cultures around the world and extends to the idea that the organ donor’s identity, essence, or spirit is inserted in the donated organ (Mauss 1990). This set of beliefs, which contains elements of what psychiatric literature deems magical thinking, contrasts with a scientiﬁc view of organs as spare parts no longer needed by one body but potentially life-saving to another. For cultures subscribing to gift-exchange practices (such as the indigenous peoples of Australia, the Paciﬁc, and North America), a kidney or a heart is not an inanimate object of individual ownership, but forms an intercorporeal and spiritual link between donor and recipient. The exchange of body parts binds donor and recipient to an entire genealogical system that extends to kin networks, linking physical and spiritual worlds in the past and to the future. An “intact body” upon death is important, to allow life to be returned from where it originated and for the continuation of the ancestral line (Lewis and Pickering 2003). From this perspective, organ transfer from an anonymous deceased donor of an alien or foreign body part to a transplant recipient marks an ambivalent process, as it potentially transforms participants’ biographies as well as the sacred and social organization of the groups to which they belong. Given the implications of organ transfer for group identity, decisions to donate are not an individual matter but a decision to be deliberated and consented to collectively. For some members of these cultural groups, anonymity protocol preventing contact between donors and recipients on the grounds that organ donation should be unidirectional and unconditional may not be a suitable moral framework. The ethical model of organ donation as an altruistic gift is not transferrable because gift-exchange depends on three obligations – to give, to receive, and to reciprocate (Mauss 1990).
Divergent beliefs and ideas about the body and identity, therefore, have ethical implications for the reception of organ transplantation in different social contexts and the manner in which it is promoted by health-care providers in multicultural environments. Cultural and religious differences also implicate the ways health-care professionals approach people in clinical settings when making requests to the families of donoreligible patients. Assumptions by health-care providers about different groups’ willingness to donate based on ethnic or religious afﬁliation and reports of historically low donation rates among speciﬁc demographics should not automatically preclude offering the option of deceased donation. Not only is the right to refusal integral to acceptable informed consent; it cannot be expected that individuals will always subscribe to the views of the group to which they belong.
Donation After Cardiac Death And Bioethics
Various proposals have been suggested to supplement the donor pool from deceased donors who are certiﬁed brain dead by neurological criteria in the ICU. These proposals include using older donors, paired kidney exchange, live donation from prisoners, proposals to introduce presumed consent, and suggestions for ﬁnancial reimbursement and compensation for both living and deceased donation. More recently, transplantation specialists have reconsidered criteria around the determination of death by allowing organ donation from non-heart-beating organ donors (i.e., donation after circulatory determination of death (DCDD)). The deﬁnition of DCDD is older than brain death and refers to the absence of the circulation of blood and other signs of life. The notion was widely recognized around a decade ago after a national conference in the United States of America on the topic.
DCDD is now legal in a number of countries (e.g., United Kingdom, United States, Canada, Australia, and New Zealand), but it is controversial and has implications for the way we think about digniﬁed death and about informed consent. In short, DCDD raises alarm bells for some commentators regarding two guiding ethical principles. The ﬁrst is the dead donor rule, which means patients must be dead before their organs can be retrieved. The second principle is that the care of living patients must never be adversely affected in the interests of favoring an organ recipient. Critics of DCDD want to know how long it takes after the heart stops for a person to be declared dead so that the organs can be removed, to ensure they remain viable. Problems arise because there is no consensus regarding the criteria to determine death. The legal time is around 2 min, but physicians suggest anywhere between 5 and 10 min is needed between cessation of a patients’ cardiopulmonary function and the declaration of death. The ethical issue this raises for palliative care, and particularly for patients themselves, is whether physicians will wait until death is completely certain before attempting to retrieve organs for transplantation, and thereby risk degradation of those organs, or whether they will prioritize the needs of the transplant recipient over care for the donor. If they wait, they respect the dignity of the donor; if they do not wait, they potentially maximize a better outcome for the recipient. On the other hand, if the patient decides in favor of DCDD, some bioethicists say there is reason to believe they will experience a renewed sense of autonomy at the prospect of their donative act.
Living Organ Donation
Living organ donation is increasingly promoted in jurisdictions where deceased donation rates are low. It provides better transplant outcomes than deceased donation and can reduce the time a transplant recipient spends on a waiting list for a deceased donor organ, as well as increasing the possibility of convenient scheduling of the transplantation procedure for the donor and recipient. These factors, along with more effective immunosuppressant medication and less invasive surgeries, have resulted in a signiﬁcant expansion of the number of living organ donors in recent decades. Although living kidney donation has always been the preferred therapeutic option in places such as Japan, it is now an established practice in many other places.
Types Of Living Organ Donation
The transplantation literature categorizes living organ donation into two different types: living directed donation and living non-directed donation. Donation is directed when the living donor speciﬁcally identiﬁes the organ recipient. Donation is non-directed when the recipient is selected by a transplant program from a waiting list of persons medically compatible with the living donor. Living directed donors are further classiﬁed as related or unrelated to the recipient. In living related donation, the donation is directed to a relative who is genetically related to the living donor. A living related donor can be a child, sibling, or parent. Because living donation between related donors and genetically identical recipients (such as identical twins) minimizes possible organ rejection, the transplant outcomes of these procedures and survival rates are often superior. Living directed donation also includes donation to recipients who are biologically unrelated, but emotionally or socially related to the donor. In living unrelated donation, the recipient can be a spouse or common-law partner, friend, colleague, or an acquaintance in the donor’s community.
Living non-directed donation refers to living donors who are not related to the recipient genetically or emotionally. In countries prohibiting organ sale, these donors are sometimes referred to as “anonymous,” “altruistic,” or “Good Samaritan” donors, because they give an organ to someone they do not know. In transplantation ethics, altruism has been narrowly deﬁned to refer to voluntary donation motivated by the absence of external reward, monetary exchange, and commercialization (Epstein and Danovitch 2009). The name “Good Samaritan” refers to the second commandment of the New Testament Bible, “You shall love your neighbor as yourself,” and is based on the ethical ideal of altruism as unconditional and selﬂess love of all human beings. “Good Samaritan” kidney donation received media attention in 2006 when 15 adults from an Australian-founded group called the “Jesus Christians” decided to donate a kidney altruistically (CNN 2014). The terms “altruistic,” “Good Samaritan,” and “anonymous” donor are not equivalent. Not all anonymous donors are religiously motivated, and some transplantation analysts prefer the term non-directed donor, because they believe both non-directed and directed donors act altruistically. However, some analysts argue that the intangible effects of altruistic donation such as eternal reward (in the context of Good Samaritanism) or psychological wellness or self-esteem (for non-religiously motivated donations) tend to suggest that non-directed donation is hardly ever completely altruistic. With the development of internet websites connecting potential donors with recipients, altruistic (stranger) donors may use criteria to request directed donation. Across the globe, unpaid non-directed donors are few in number. Living non-directed donors are not permitted in some jurisdictions, or in some transplant centers, due to medical professionals’ suspicion of their motives or concerns regarding the possibility of organ commerce.
Living Organ Donation And Bioethics
Health-care professionals have deliberated the moral justiﬁcation of living organ donation to save the life of another person since the beginning of the era of organ transplantation. Risk to living donors raises ethical concerns within the medical community about violating the principle of non-maleﬁcence and the moral injunction to “do no harm.” Although the advent of laparoscopic nephrectomy (minimally invasive keyhole surgery to remove a kidney, pioneered in 1995) improved positive outcomes for living kidney donors, medical risks remain (Segev et al. 2010). Mortality and morbidity rates for live donation of a section of a liver, a more recent medical procedure, carry even higher risk to the donor (Gordon 2013).
At the level of policy and practice, the ethical dilemma medical professionals confront is how to weigh the risks to the donor, a healthy individual, who is consenting to self-harm by undergoing surgery he or she does not need, alongside the beneﬁts to the transplant recipient, who receives life-saving therapy or vastly improved quality of life. Living donation is permitted on the basis that donors may receive the psychological reward of feeling good for alleviating the suffering of another person or reducing the time they spend on the waiting list for a suitable deceased donor organ. Empirical studies indicate an additional beneﬁt for living donors may be increased self-esteem.
The quality of a living organ donor’s consent is an essential consideration for health-care professionals in determining whether or not a person is a suitable candidate for living donation. Determining informed consent is a mandated component of the psychosocial evaluation of living organ donors and is based on the principle of respect for individual autonomy. Without a donor’s consent and declaration that they are acting voluntarily, in the interests of the recipient, an organ cannot be taken from them.
A primary concern for health-care professionals is that living donation challenges the traditional criteria of informed consent used to determine an individual’s decision-making and voluntariness. In the case of directed donation, it raises ethical challenges regarding the autonomy and moral agency of some prospective donors, such as children, adolescents, and mentally incompetent persons, who may be perceived as assenting to donate to a family member but who may not be able to make decisions independently (Crouch and Elliott 1999). At the same time, the conventional model of deliberative reasoning which health-care professionals use to assess a donor’s autonomy may not ﬁt the decision-making process that characterizes directed donation between family members, intimates, and loved ones. Empirical research shows that these donors make instantaneous decisions about donation without reﬂecting on their actions because it feels “natural” or the “right thing to do.” A key concern for health-care professionals is how to ensure prospective donors are free from external pressures or coercion from other family members or medical practitioners to donate, as well as being free from internal pressures, such as feelings of obligation due to role expectation or guilt if they do not actively help. In communitarian-oriented societies, such as Asia and Africa, where autonomy is not conceived in an individualistic manner, concerns that donors in familial contexts may feel pressure to donate may not always be true. In such societies, autonomous decisions may precede or occur in consultation with recognized authorities.
In addition to assurances that living directed donors’ offer to donate is voluntary and intentional, ethical concerns are raised regarding the motivations of living non-directed donors, given that there are no physical beneﬁts, few psychological beneﬁts, and no emotional ties to the recipient. Health-care professionals must not only judge whether the offer to donate a kidney by living non-directed donors is a genuine expression of normal altruism and free from coercion; they must also ensure that donors are not seeking payment. Given the scarcity of deceased donor organs and improved survival rates from living donors, a number of commentators have advocated government-controlled, regulated systems to encourage living donation, on the basis that an “ethical market” (Erin and Harris 2003) can uphold the principles of beneﬁcence, non-maleﬁcence, autonomy, and justice for donors and recipients worldwide. A powerful opposing view is that undue inducements in the context of unpaid organ donation shade into unjust inducement of poor and vulnerable persons in the context of transplant tourism.
Transplant tourism is a form of “medical tourism,” in which afﬂuent potential recipients travel across international borders to obtain organs and health care associated with transplantation, at a lower cost than in the patient’s home country. The practice relies on live organ donors who may be operated on without knowledge that their organ is being removed or sell their organs under conditions that are almost always exploitative and harmful to the donor’s welfare. A common geographical pattern is for potential recipients to move from the global north to medical facilities in developing countries and receive organs sourced from providers who have been trafﬁcked from the global south or “third-” world countries to the transplant tourism destination (Shimazono 2007).
Organ donation has been on the agenda since the emergence of bioethics in the late 1960s, but it is not just an issue of domestic importance. Global bioethics scholars have increasingly asked why organ transplantation attracts so much attention and why we continue to spend enormous amounts of energy and resources on trying to supplement the donor pool when there are other more pressing concerns to be addressed, such as worldwide health inequalities relating to rising rates of diabetes, obesity, and end-stage renal failure. On a global scale, bioethical concern about the shortage of deceased donor organs in developing countries, and the global movement of organs for transplantation, has resulted in international cooperation between professional and nongovernmental organizations, such as WHO and UNESCO, to eradicate illegal organ trade and trafﬁcking. As part of The Declaration of Istanbul on Organ Trafﬁcking and Transplant Tourism (2008), which prohibits global organ trading, country signatories are required to develop national self-sufﬁciency in organ donation. It is incumbent upon signatories to the Istanbul Declaration to protect vulnerable populations in resource-poor countries from exploitation, by implementing programs to prevent organ failure and meet patients’ needs within their own jurisdictions. Thinking about bioethics from an interdisciplinary perspective enables us to take these factors into account, as well as helping to inform understanding of the professional patient relationship and institutional practice.
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