Response to "Nurses' Experiences Giving Postmortem Care to Patients Who Have Donated Organs: A Phenomenological Study"
Aroskar, Mila Ann Rn, EdD, Faan, Scholarly Inquiry for Nursing Practice
The intent of this response is to alert the reader to some still unresolved issues in understanding the complex phenomenon of death in a health care system where sophisticated technology enhances our medical capabilities and contributes to previously unknown ethical dilemmas for patients, families, and health professionals.
The Wolf study explores the lived experiences and hidden or invisible work of nurses who provide care for transplant donors before, during, and after organ procurement. These nurses work within a complex and dynamic web of human relationships at the nexus of life-death-life, that is, the life and death of the donor, and the lives of the donor's family, other health professionals, and organ recipients. Both nurses and physicians struggle with the profound ethical issues and uncertainties involved in organ procurement, as dead patients are treated in many ways as if they were still alive (Youngner et al. 1985). This study is an important contribution to the literature of nursing and medicine, as attention must be paid to the subjective experiences of health professionals in order to establish systems of care delivery that are sensitive to care and support needs of patients (donors and potential recipients), their families, and support of health professionals, in this instance, nurses.
Organ transplantation is recognized in this study as a technological innovation that precludes a more peaceful death for patients who are "transformed" into organ donors as they move from machine-supported life and brain death to death following organ procurement. Nurses who care for these patients experience conflict and suffering, as they identify with families and even in some instances with donors. They recognize implicitly (if not explicitly) the incongruity of caring for what they describe as the living/dead. Ethical, legal, social, spiritual, psychological, cultural and other aspects contribute to these conflicts as nurses deal with the still profound mystery of death in the course of human experience. It is important to note that these conflicts arise in a specific cultural milieu that views death generally as a tragedy. This is not the view of all cultures.
In this study, nurses report that they serve roles such as "standing in" for the family and serving as temporary kin to the family of the organ donor in the process of organ procurement and care of the body after surgery for organ removal. In a sense, these nurses are also "standing in" as expert, respectful, and caring members of the wider human community, the broader context of nursing care and obligation that extends to organ donors, recipients, and their families. Study respondents also see themselves as "protectors" of the donor and recipient as they participate in the rituals and procedures that surround organ procurement. One might say that these nurses have a "covenant" of protection with both the donor and recipient through the life/death/life process. In these roles, nurses, too, experience the tragedy of suffering and unexpected death of recently healthy persons and need to feel that something good comes out of such tragic occurrences. They, too, struggle with balancing the tragedy of a donor's death with the gift of life to the organ recipient.
Death of the organ donor is perceived differently from the death of others, as nurses report seeing the donor as a "sacred being." This perception is not explored further in Wolfs study but needs clarification of its meaning for nurses and of how, if at all, these feelings affect care of organ donors and other patients. Are brain-dead patients who become donors perceived as requiring special or different nursing care, other than specific technical requirements of care necessary for the organ procurement process because they are defined as "sacred beings"? Does this translate into special or even supererogatory nursing obligations or benefits that other patients do not receive when all patients are to be regarded as equally worthy of respect and as having inherent dignity? If this is the case, issues of justice and fairness with regard to the allocation of scarce nursing resources are raised.
Of particular interest to this author are the different views of death expressed by study respondents. They seem to view the phenomenon of death in stages or as a process of "deaths" through time leading to what is described as "dead dead." Death is not viewed as a single event in time. These ideas of death as a process are conveyed in language such as: brain death as legally dead but not "dead dead", irreversibly dead, "final death" of a brain-dead patient, presence of procurement agency nurse at the bedside of the brain-dead patient as finalizing the death of the living/dead patient, "clinical death" after surgery for organ removal, and confirmation of death for the nurses when the dead body is wrapped in the shroud prior to transport from the OR to the morgue. All of these ideas suggest that study respondents have views of death that are both similar to and different from current efforts to define the phenomenon of death from physiological and philosophical perspectives. Some of these ideas are undoubtedly specific to the circumstances and process of organ procurement which compounds the sense of unease and conflict.
Definitions of death also differ among physicians and lay persons. Whereas there is almost unanimous medical opinion "...that a person is dead when and only when the entire brain including the brain stem has permanently ceased to function," most lay people continue to regard functioning of the heart and lungs as central to life and their cessation as defining death (Bernat, Culver, & Gert, 1982). Cardiac and respiratory functions are precisely the functions that are maintained by mechanical support in organ donors. Other physical and observable characteristics such as warm, moist skin are also maintained. These factors contribute to the difficulty of or aversion to viewing the brain-dead patient as "dead dead." Such realities may contribute to the spectrum of views on death of organ donors held by the nurses in this study and particularly the recognized incongruity in providing care for so-called living/dead patients.
One cannot help but speculate as to whether there is a time in the sequence of events involved in becoming a brain-dead organ donor when it is no longer appropriate or accurate to use the language of "patient." It may be that consideration of the organ donor as "patient" carries important and special meanings for nurses and other health professionals that positively or negatively affect the care/ caring provided.
The President's Commission report, Defining Death: Medical, Legal and Ethical Issues in the Determination of Death (1981), reflected both lay and medical perspectives and suggested that all states adopt the following statute: "An individual who has sustained either 1) irreversible cessation of circulatory and respiratory functions, or 2) irreversible cessation of all functions of the entire brain, including the brain stem is dead." This is congruent with the 1968 Uniform Determination of Death Act that codifies the common law. The report is not congruent with almost half the state statutes adopted since 1970 that use only the brain standard and do not mention circulation and respiration in defining when death occurs. It is also confusing for physicians and nurses as to how such a dual recommendation applies in practice when total brain death is now the generally accepted criterion and practice in the medical community and is also the standard used by the courts. The report adds to the lack of clarity, confusion, and uncertainty about death when patients are maintained on mechanical support before surgical removal of organs, as indicated by study respondents involved in care of organ donors before and after removal of their organs.
Defining death physiologically is different conceptually from philosophical efforts to define death that involve considerations of loss of personhood. Efforts to define personhood acknowledge that while we are biological organisms, we are also more than that. We are persons or people. Philosopher Robert Veatch (1972) argued that the irreversible loss of what is essential to the nature of an individual, that is, personhood, defines death. Such a notion has been rejected as too vague, since even people in a persistent vegetative state (PVS) such as Karen Ann Quinlan and Nancy Cruzan would be considered dead on this view. Philosopher Douglas Schrader (1986) contends that if we think of human beings as both biological entities and as persons, that we may be subject to more than one death. Individuals who identify the person with the spirit or soul and who believe that the spirit or soul are immortal may resist the idea of the death of the person because they believe that the "person" does not die. Such a perspective may be held by the study respondent(s) who felt that "the spirit of the dead patient watches over the postmortem-care event."
It might be conceptually clearer to view dying as a process and death as a single phenomenon, that is, the irreversible cessation of all functions of the entire brain, including the brain stem. But the processes that occur after declaring a person brain dead who then becomes an organ donor make it difficult to accept such conceptual "neatness," especially in light of the philosophical, religious, and spiritual considerations raised and the varied responses out of the lived experiences of the nurses caring for patients who become organ donors. The view that care of the body/dead patient after organ removal makes the dead patient more comfortable, so that suffering decreases and the response that postmortem care helps nurses achieve closure after the patient's death, that is, after removal of organs, raises fundamental questions about how nurses view death and their relationship with unresponsive brain-dead donors. Do these more process-oriented views of death provide comfort to nurses who also suffer the tragedy of the traumatic deaths of recently healthy persons, and who also require understanding of the meaning of such tragic events as the death of an infant from abuse or accidents that result in the death of a young person who is not "expected" to die by virtue of a terminal illness or very old age? Nurses caring for organ donors seek meaning in the perpetuation of at least a part of the dead patient's life in the organ recipient, that is, a significant connection with life and the ongoing human community.
An understanding of continuity from life through death of the donor to the life of the organ recipient is perhaps symbolic of what William May (1985) calls the "better human community," a Judeo-Christian understanding of community where giving and receiving is the rule as in "...the assistance that one mortal being renders another," and a way of affirming and sharing our humanity. As May reminds us, the organ recipient is not rescued from the need to die. It is only the day of death that is deferred. This community notion also reaffirms our interconnections, interdependencies, and responsibilities beyond our families and intimates to strangers we do not know. Perhaps respondents were indicating such an understanding in their identified role of "protector" for both organ donor and recipient.
Wolf's discussion of the principle of beneficence as "governing" the organ donor situation can be expanded to include discussion of ethical principles such as respect for persons as both autonomous moral agents and as members of the human community, and the principle of nonmaleficence, that is, avoiding or preventing harm, expressed by respondents who see themselves as "protectors" of the brain-dead donor and his/her organs for benefit of recipients at the same time they provide care and respect for the dead body of the donor as representatives of the donor's family. In addition to ethical principles, aesthetic values should also be considered, as they represent important concerns and affect the care provided. Nurses in this study experienced aversion to traumatic injury of the dead body or distressing facial expressions. They want the body to look presentable, as do families who fear disfigurement of the brain dead donor.
The Wolf study provides a rich context for further empirical and philosophical research such as identification of nurses' understandings of and perspectives on the phenomenon of death, what nurses mean when they indicate that brain-dead patients become "sacred beings" as organ donors, how to design adequate and compassionate systems of care for brain-dead patients who become donors, their families, and nurses who acknowledge their uneasiness and exhaustion in provision of care to these patients. What education and support are needed to deal with the ethical dilemmas confronting nurses who participate in organ procurement? What are appropriate rituals and practices for what Youngner and others (1985) describe as "...a new class of dead patients ?"
In summary, the purpose of this response was to present ideas for development of further research and of education for nurses and other health professionals who are working or will work in the organ procurement area. In addition, thanks are due to Wolf for pursuing this very complex area of research in nursing created in large part by our amazing technological capabilities. These capabilities add to the complexity of care and affect dramatically our understandings of such human phenomena as life and death. Such efforts in education and in philosophical and empirical research are important not only for individuals and their families but for the broader human communities of which we are all a part.
Bernat, J. L., Culver, C. M., & Gert, B. (1982). Defining death in theory and practice. Hastings Center Report, 72(1), 5-9.
May, W. F. (1985). Religious justification for donating body parts. Hastings Center Report, 75(1), 38-42.
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. (1981). Defining Death: Medical, Legal and Ethical Issues in the Determination of Death. Washington, DC, Government Printing Office.
Schrader, D. (1986). On dying more than one death. Hastings Center Report, 76(1), 12- 17.
Veatch, R. (1972). Brain death: welcome definition or dangerous judgment. Hastings Center Report, 2(6), 10-13.
Youngner, S. J., Allen, M., Bartlett, E. T., Cascorbi, H. F., Hau, T., Jackson, D. L., Mahowald, M. B., & Martin, B. J. (1985). Psychosocial and ethical implications of organ retrieval. New England Journal of Medicine, 313(5), 321-323.
Mila Ann Aroskar, R.N., Ed.D., F.A.A.N.
University of Minnesota
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Publication information: Article title: Response to "Nurses' Experiences Giving Postmortem Care to Patients Who Have Donated Organs: A Phenomenological Study". Contributors: Aroskar, Mila Ann Rn, EdD, Faan - Author. Journal title: Scholarly Inquiry for Nursing Practice. Volume: 5. Issue: 2 Publication date: January 1, 1991. Page number: 89+. © Springer Publishing Company 1996. Provided by ProQuest LLC. All Rights Reserved.
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