Stephen Doran. The Linacre Quarterly. Volume 86, Issue 4, 2019.
The Catholic Church has long recognized the goodness of organ donation. In his address to the Eighteenth International Congress of the Transplantation Society, Pope John Paul II (2000) states:
every organ transplant has its source in a decision of great ethical value: the decision to offer without reward a part of one’s own body for the health and well-being of another person. Here precisely lies the nobility of the gesture, a gesture which is a genuine act of love. It is not just a matter of giving away something that belongs to us but of giving something of ourselves. (p. 3)
Likewise, Pope Benedict XVI (2008) has affirmed the value of organ donation: “The act of love which is expressed with the gift of one’s vital organs remains a genuine testimony of charity that is able to look beyond death so that life always wins.”
Donation occurs only after death, yet the process of obtaining organs often begins before death has actually happened. The so-called Dead Donor Rule states that the donor of nonpaired vital organs must be dead before donation can occur: “Vital organs which occur singly in the body can be removed only after death, that is from the body of someone who is certainly dead. This requirement is self-evident, since to act otherwise would mean intentionally to cause the death of the donor in disposing of his organs” (John Paul II 2000, 4). Typically, donors are declared dead by either neurologic (Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death 1968, 337-40) or cardiovascular criteria prior to procurement of organs (Steinbrook 2007, 209-13).
While the moment of death is of primary importance for organ donation, death is not a momentary event but rather an ontological change in the person where the union of body and soul becomes divided. The purpose of this article is to examine the impact of organ donation on the process of dying. A Catholic understanding of death is important to assess the impact of organ donation on the process of dying. With this understanding in mind, this article will then examine whether the various models of organ procurement (donation, presumed consent, organ markets) result in the commodification of the donor. This article will then examine the impact of a third party of interest in the process of dying. Studies have shown that family members of organ donors report traumatic memories of the organ procurement process, reporting that care providers became “organ focused” rather than “person focused.” Does the process of organ donation overshadow the ars moriendi—the art of dying?
Catholic Understanding of Death
While alive on earth, humans are meant to be an indivisible union of body and soul, and the resurrection is the perfect realization of this harmony. Death is the necessary event linking these two states. The event of death is therefore an ontological change, one that has profound theological implications. Despite its ontological status, however, the starting point of the Christian understanding of death is biological. According to Ratzinger (1988), death is the “physical process of disintegration which accompanies life. It is felt in sickness and reaches its terminal point in physical dying” (p. 95). Death may be an ontological change, but it is one that can be inferred by biological indicators. St. John Paul II (2000) describes death as an event that no scientific technique can directly identify: death is the total disintegration of the integrated whole that is the personal self (p. 4).
But the dying of a human being cannot be confined to the moment of clinical death. Human beings are forced to accept the fact that their lives are not under their own power. They can respond in one of the two ways. They can defiantly seek to gain power over their own existence, but this is an exercise in futility, leading ultimately to anger, frustration, and despair. The alternative response to death is to trust the power that actually controls their existence. “And in this second case, the human attitude towards pain, towards the presence of death within living, merges with the attitude we call love” (Ratzinger 1988, 96). The confrontation with physical death is the confrontation with the basic question of human existence. For the Christian, “physical death is met with in the daring of that love which leaves self behind, giving itself to the other” (Ratzinger 1988, 95). The God who died in the person of Jesus is the source of this love. When Christians die, they die into the death of Christ himself. “Death is vanquished when people die with Christ and into him. This is why the Christian attitude must be opposed to the modern wish for instantaneous death, a wish that would turn death into an extensionless moment and banish from life the claims of the metaphysical” (Ratzinger 1988, 98).
Death, as a consequence of original sin, was not part of God’s intention for humanity. Yet, death was redeemed by Christ through the crucifixion a resurrection. “The obedience of Jesus has transformed the curse of death into a blessing” (Catechism of the Catholic Church 2000, 1009). Death is a sign that points toward God, an opportunity to yield to the Father’s providence and love in the midst of bodily disintegration. John Paul II (2006) sees the body as a revelation of the Trinity: “The body, in fact, and only the body, is capable of making visible what is invisible: the spiritual and the divine. It has been created to transfer into the visible reality of the world the mystery hidden from eternity in God, and thus, to be a sign of it” (p. 203). Death is a privileged time to encounter God, and whether witnessed or experienced, is an opportunity to yield to God an act of faith that is embodied in the crucifixion. Properly understood, death is meant to be a sign that points to God’s desire to be in communion with us: “Life finds its center, its meaning, and its fulfillment when it is given up” (John Paul II 1995, 51).
However, in modern times, death has become defined as a medical event, and the ars moriendi, the art of dying, has become lost. The existential realities that accompany the process of dying are overshadowed by technology. The Catholic tradition has long held that a person can prepare for a good death by leading a repentant, righteous life. Because God is in control even of the moment of death, death should not be feared. Within a more secularized society, medical science offered new hope and salvation, and death became the enemy. “It is here that we find the dying patient today: in the intensive care unit with an array of tubes, devices, catheters, and monitors blurring the boundary between life and death—a boundary that patient and family alike are unprepared to face” (Dugdale 2010, 23).
Does Organ Donation Result in Commodification of the Dying?
A Christian understanding of death enables us to critically analyze the process of organ donation. The procurement of organs generally falls into three models: donation, presumed consent, and organ markets. In the United States, organs are obtained exclusively under the donation model, in which either an individual designates prior to death his or her wish to donate organs or by surrogate permission, when the individual has not expressed a preference for donation. “The donation model is built on the moral notion that there is a duty to respect the bodily integrity of members of the moral community and that this obligation remains even after death” (Veatch and Ross 2015, 132). The primary argument in favor of the donation model is grounded in the principle of autonomy, as many people would believe their autonomy would be violated if their desires regarding donation were not honored. The duty to respect does not end with the person’s death.
What about the person who dies without expressing either an objection or consent to donation? Can we presume that, given the chance, the person would have consented? The answer is “no” as a significant minority of Americans do not want their organs used for transplants (Veatch and Ross 2015, 134). Therefore, before organs can be donated, a surrogate must give permission. Using substituted judgment, the surrogate makes decisions based upon what is known about the dying person. In the case of individuals unable to give valid consent, such as infants, children, or mentally incompetent persons, surrogate consent is used. As Benedict XVI (2008) states,
It often happens that organ transplantation techniques take place with a totally free act on the part of the parents of patients in which death has been certified. In these cases, informed consent is the condition subject to freedom, for the transplant to have the characteristic of a gift and is not to be interpreted as an act of coercion or exploitation.
Conflict can arise when the wishes of the deceased person are opposed by the next of kin or other surrogate. If the deceased had previously refused consent to organ procurement, the Uniform Anatomical Gift Act (UAGA) clearly states the individual’s refusal takes precedence over the desire of relatives to make the gift. Conversely, the individual’s wishes to donate prevail over the objections of family members, and according to the UAGA, no person other than the donor can amend or revoke the anatomical gift of a donor’s body or part (Veatch and Ross 2015, 136-37).
In so far as it does not violate the notion of gift and the hope in the resurrection, the donation model is congruent with Catholic teaching. This model is the basis for organ procurement in most of the English-speaking world, Germany and the Netherlands. However, the problem with the donation model is that not enough organs have been procured to meet the growing demand. In 2012, 6,860 Americans died while on the waiting list for an organ, compared with 4,257 in 1996 (Veatch and Ross 2015, 143). This raises the question: how can more organs be obtained? To answer this question, we have to look to other countries.
In what may come as a surprise to people from the United States, a large number of countries have laws that allow organs to be procured without explicit consent by either the donor or a surrogate. Typically, unless a person prior to death chooses to opt out of organ donation, it is presumed that they would be willing to donate their organs. Interestingly, areas of the world with more sympathy toward socialism and Catholicism endorse such laws, while countries that are more individualistic or Protestant tend not to have such laws. Known as “presumed consent,” routine procurement without consent of the donor or family is seen as an answer to the shortage of vital organs. Two rationales can be considered to justify these laws. First, one might propose that the interests of society are so great as to jeopardize the presumptive rights of the individual. The closest analogy to organ donation without consent would be the authorization of an autopsy where a public health risk or criminal prosecution is at stake. A person could argue that if for the good of society, a medical examiner can conduct an autopsy without consent, so too could organs be procured without the consent of the donor or family for the same reason. However, this analogy falls short in that the “goods” of society are distinctly different: the good of not dying for want of an organ is not the same as the good of protecting society from a contagious disease or murder. A second rationale for taking organs without consent is based upon the claim that people would have consented if they had been asked when they were competent to decide (Veatch and Ross 2015, 157). This is the same justification for providing lifesaving treatment to an unconscious patient in the emergency room: healthcare providers have the authority to treat such a person without waiting for the person to recover to give actual consent or for the arrival of surrogate decision makers. However, this rationale also falls short. If a person’s life can be saved through standard, nonburdensome treatments, the healthcare provider is obliged to provide such care, and the patient is obliged to receive such care. However, the donation of organs is a gift and not obligatory.
From the Catholic moral tradition, presumed consent is not morally permissible. It is a step toward the commodification of organ donors, treating the deceased in a utilitarian fashion as a collection of useful body parts. Furthermore, presumed consent bypasses informed consent, which is necessary for morally licit organ donation. According to the Catechism of the Catholic Church (2296), “organ donation after death is a noble and meritorious act and is to be encouraged as an expression of generous solidarity. It is not morally acceptable if the donor or his proxy has not given explicit consent.” Furthermore, “The free gift of organs after death is legitimate and can be meritorious” (Catechism of the Catholic Church 2301). The necessity for informed consent was emphasized by Pope Pius XII (1960): “Generally speaking, doctors should not be permitted to undertake excisions or other operations on a corpse without the permission of those charged with its care, and perhaps even in the face of objections previously expressed by the person in question” (p. 382). Informed consent protects the intrinsic dignity and inviolability of the human person. It acknowledges that the cadaver of a human person needs to be respected. The human person, made in the image and likeness of God, requires that we also honor his or her mortal remains. Also, informed consent acknowledges that a person is a steward of his or her body and cannot treat it or its organs as property to be disposed of at will (Austriaco 2009, 246). As Pius XII (1960a) taught, “God alone is the lord of man’s life and bodily integrity, his organs and members and faculties, those in particular which are instruments associated in the work of creation. Neither parents, nor husband or wife, nor even the very person concerned, can do with these as he pleases” (p. 97). Furthermore, informed consent honors the essential formality of an organ as gift. Without the donor’s consent, the organ is taken rather than received (Austriaco 2009, 249). As stated by Benedict XVI (2008), “With frequency, organ transplantation takes place as a completely gratuitous gesture on the part of the family member who has been certifiably pronounced dead. In these cases, informed consent is a precondition of freedom so that the transplant can be characterized as being a gift and not interpreted as a coercive or abusive act.”
An alternative to presumed consent is mandated choice. Under this model, individuals are required to express their preferences regarding organ donation at the time of performing a state-regulated task such as application for driver’s license, state identification cards, or tax returns. This is in contrast to the model used in the United States where potential donors are afforded the opportunity to choose to donate. Mandated choice has the potential to increase the donor pool and still honor the principle of informed consent if a meaningful exchange of information is given at the time of the mandated choice (“AMA Code of Medical Ethics’ Opinions” 2012). From a Catholic perspective, mandated choice may represent a morally licit way to encourage organ donation as it respects the dignity of the human person as charitable gift giver. Each individual is still given the opportunity to give or withhold his or her organs for donation and transplantation. However, some have argued that mandated choice is a violation of autonomy: by not giving individuals the choice not to choose, this limits their freedom and as such is unjust (Austriaco 2009, 250).
The most extreme example of commodification of organ procurement is the sale of organs. In this model, a person could sell one of his or her kidneys (and theoretically a lung or a portion of the liver). Through international trafficking, organs have been sold by those desperately needing money to those with enough money to pay for them. The United Nations views organ trafficking as part of the larger problem of human trafficking in forced labor and prostitution (Veatch and Ross 2015, 165). In the United States, the National Organ Transplant Act (1984, 98 Stat. 2339) states: “It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for the use in human transplantation if the transfer affects interstate commerce.” Despite this prohibition, an international market exists for the payment of organs, particularly for living, nonrelated kidney donors. In 1988, Iran established a system for the legal sale of kidneys. By 1999, the waiting list for kidney transplants had been eliminated, and over 50 percent of patients with end-stage renal disease were living with a functioning graft (Ghods and Savaj 2015, 119-36). The governmental donor award of $1,200 US equivalent is not enough to motivate most donors, so recipients often provide rewarding gifts to the donors. Under the supervision of government officials, the donor and recipient meet in advance to negotiate the rewarding gift to be paid to the donor after transplantation.
Over the years, various countries have promoted themselves as destinations for low-cost health care to international travelers. “Medical tourism” is often found in countries throughout Asia, and typically patients come to receive orthopedic or cosmetic surgical procedures. From 2002 to 2008, the Philippine government sponsored the Philippine Organ Donation Program, which compensated donors with about $3,900 US equivalent. This program led to an influx of foreign recipients, with over half of living-nonrelated kidneys being transplanted into non-Filipinos. This program was officially ended in 2008, but a black market still likely exists (Turner 2015, 152-55). Organ transplant markets have existed in various forms in a number of other countries including India, Pakistan, Bangladesh, and China.
The sale of organs for transplant is clearly condemned by the Catholic Church. In his address to the Eighteenth International Congress of Transplantation Society, John Paul II (2000) states: “any procedure which tends to commercialize human organs or to consider them as items of exchange or trade must be considered morally unacceptable, because to use the body as an ‘object’ is to violate the dignity of the human person” (p. 3). Pope Benedict XVI (2008) uses even stronger terms:
The possibility of organ sales, as well as the adoption of discriminatory and utilitarian criteria, would greatly clash with the underlying meaning of the gift that would place it out of consideration, qualifying it as a morally illicit act. Transplant abuses and their trafficking, which often involve innocent people like babies, must find the scientific and medical community ready to unite in rejecting such unacceptable practices. Therefore they are to be decisively condemned as abominable.
Pope Francis (2016) lists organ trafficking with other forms of “new slavery” including forced labor, prostitution, the drug trade, and organized crime.
Does the Insertion of a Third Party of Interest Interfere with the Ars Moriendi—The Art of Dying?
Two parties are typically involved in medical decision-making: the patient (often with his or her family) and healthcare providers. However, the process of organ procurement introduces a third party whose vested interest is not in the well-being of the patient. The process of procuring organs for donation follows a typical pattern. A patient sustains a severe, irreversible brain injury. The local organ procurement organization (OPO) is contacted, often before the patient has been declared legally dead. A representative for the OPO approaches the family to discuss the option of organ donation. If the dying patient has previously indicated a willingness to be an organ donor, the OPO representative confirms this with next of kin or other surrogates. If the dying patient has not previously expressed a wish to donate, the OPO representative asks whether the family would be willing to consider organ donation on behalf of the dying patient. If consent is obtained, the organs are procured once the patient has been declared dead, usually by the so-called brain death criteria.
In an effort to increase the pool of potential donors, almost all states have required request laws mandating that someone ask for permission to procure organs from patients who are nearing death or are already dead by neurologic criteria. In fact, as a requirement for participation in Medicare, federal law holds hospitals accountable to Centers for Medicare and Medicaid Services for their donation programs in an effort to increase the number of organs and tissues available for transplantation. Furthermore, the OPO determines medical suitability. No physician or nurse or any other caregiver in the hospital is allowed to make decisions about patient medical suitability for any type of organ, tissue, or eye donation. Only an OPO staff member or a trained, designated requester may approach the family of a potential donor for consent for organ, tissue, or eye donation (“Hospital Death Notifications” n.d.).
As can be seen, by law, the process of confirming or obtaining consent for organ donation requires the insertion of a third party (i.e., the OPO representative) into the hospital room of a dying patient. In most cases, the patient who is a potential organ donor has experienced a sudden, severe neurologic injury due to trauma, stroke, or other unanticipated circumstances. Into this emotionally and spiritually charged scenario is placed a stranger, whose primary motive is to obtain organs for transplantation.
Three possible scenarios exist regarding potential donation: permission has been previously given, permission has been previously declined, and no prior decision has been made. In cases where the dying person has expressed a desire to donate organs after death, a conflict of interest between the patient and the organ procurement agency appears absent. The desire to gift organs by the person is congruent with the OPO’s desire to receive them.
However, even if the dying person has previously stated his or her opposition to organ donation, the OPO is still obliged to approach the surrogates and inquire. This raises an important question: can family members override the previously expressed refusal to donate organs? The answer is “no.” The UAGA makes it clear than “an individual’s refusal to agree to organ procurement takes precedence over the willingness of relatives to make the gift” (Veatch and Ross 2015, 169). By the basis of autonomy, family members, who in essence are representing society as a whole, cannot override the interests of the individual patient. There is a duty to respect the deceased person’s wishes. The body of the deceased is the mortal remains of a person, whose wishes deserve to be honored. While “a corpse no longer is subject of a right in the strict sense of the word…the body was the abode of a spiritual and immortal soul, an essential constituent of a human person whose dignity it shared. Something of this dignity still remains in the corpse” (pp. 379-380) (Pope Pius XII 1960).
What if the opposite situation occurs? That is, what should happen if family members attempt to override the desires of someone who, while alive and competent, signed a valid donor card? Can family members prevent the procurement of organs even though the deceased had previously expressed a willingness to donate? In theory, the answer is “no.” Family members cannot prevent the donation of organs from someone with a valid organ donor card. In practicality, the opposition of family members may dissuade the OPO from aggressively pursuing organ procurement. However, a good case can be made that the OPO has a moral obligation to follow the deceased’s wishes and procure the organs, even if confrontation with family members is necessary. The law clearly gives the priority of donor designation over a family veto. According to the 2006 UAGA, “a person other than the donor is barred from making, amending or revoking an anatomical gift of a donor’s body” (p. 29) (Revised Uniform Anatomical Gift Act 2006). Therefore, in the circumstance where family members attempt to override the desires of the dying person, the presence of a third party (i.e., the OPO) is necessary to protect the autonomy of the donor.
The third scenario of organ donation consent occurs when the dying person has not previously overtly expressed either a willingness or refusal to donate organs after death. The insertion of a third party in the dying process is particularly influential in this situation. Often, the death of a relative is unexpected, and family members describe a sense of shock, chaos, or panic. They report being ill-equipped to comprehend the meaning of brain death and feel pressured to make “emotionally charged and time-pressured decisions about donation in the context of grief and bereavement” (Ralph et al. 2014, 927). The process of donation can interfere with the “work” or “art” of dying: consenting families evaluated the donation procedure negatively, as they often waited a considerable time for brain death to be established (Groot et al. 2016, 7). Families often refused when they felt the potential donor was seen as an object, instead of a person. Relatives perceived providers as “organ focused” rather than “person focused.” Providers seemed primarily preoccupied with acquiring family member approval for organ donation or with the task of preserving organs. A consistent objection from families was insufficient time was allowed between the declaration of death and the request for organ donation, which was experienced as “coming ‘too early’, as arrogant, or ‘like a slap in the face’” (Kesserling, Kainz, and Kiss 2007, 214-15).
The process of organ donation, especially if the deceased person’s wishes are unknown, is not always negatively experienced. The lifesaving act of donation can have a positive impact on families (Ralph et al. 2014, 933). However, when providers are “organ focused” and treat the dying patient in a utilitarian fashion, many family members experienced traumatic memories of the process of dying (Kesserling, Kainz, and Kiss 2007, 214). Family members report “an overwhelming sense of uncertainty about death and the donation process, vulnerability; an acute emotional and cognitive burden and predecisional and postdecisional dissonance” (Ralph et al. 2014, 933). This abrupt insertion of a third party into the dying process can be a distraction to the art of dying. The dying of a person cannot be confined to the moment of clinical death, yet the donation process forces family members to reduce the process of dying to a single moment. Dying becomes a medical, technical event managed by professionals. This is consistent with the modern wish for instantaneous death, which as Ratzinger (1988) states is “a wish that would turn death into an extensionless moment and banish from life the claims of the metaphysical” (p. 97). The process of dying is the ultimate expression of suffering, both on the part of the dying person and the family and loved ones who are present during this process. Medicine and technology rightfully attempt to reduce human suffering, but the “will to do away from it completely would mean a ban on love and therewith the abolition of man” (Ratzinger 1988, 103). As John Paul II (1984) states in Salvific Dolores, suffering is “an invitation to manifest the moral greatness of man, his spiritual maturity.…In bringing about the Redemption through suffering, Christ has also raised human suffering to the level of the Redemption. Thus each man, in his suffering, can also become a sharer in the redemptive suffering of Christ” (para 19). The process of organ donation may become a distraction to the process of dying, and as a result, the redemptive nature of suffering is potentially diminished or even lost all together. Death is a privileged time to encounter God, whether witnessed or experienced, and is an opportunity to yield to God an act of faith that is embodied in the crucifixion. Properly understood, death is a sign that points to God’s desire to be in communion with us: “Life finds its center, its meaning, and its fulfillment when it is given up” (John Paul II 1995, 51). While the process of organ donation does not necessarily overshadow the ars moriendi, unless proper attention is given to the deceased as a person, families of donors can become alienated from this sacred experience.
Conclusion
Organ donation is an act of love that models the sacrificial love of Christ. The Church has always recognized its goodness. However, the process of procuring organs for donation must respect the integrity of the person who must never be treated in a utilitarian fashion either before or after death. Treating the person as a commodity has occurred despite condemnation by both secular and Catholic ethicists. Presumed consent laws violate the principle of informed consent and organ trafficking represents the most extreme example of commodification of the dying. Furthermore, the process of organ procurement inserts a third party into the process of dying. Family members often have traumatic memories of this process and report feeling the potential organ donor was seen as an object and not as a person. These experiences undoubtedly distract family members from the existential nature of the dying process, diminishing the opportunity for sharing in the redemptive nature of suffering. Healthcare providers and OPOs have a grave responsibility to preserve organ donation as “giving” and prevent organ procurement as “taking.”