Archived Comments for:
The United States Revised Uniform Anatomical Gift Act (2006): New challenges to balancing patient rights and physician responsibilities
Response to Verheijde, et al. Article regarding the Revised UAGA
Christina W. Strong, Esq., Law Office of Christina Strong
24 April 2008
The authors of the article “United States Revised Uniform Anatomical Gift Act (2006): New challenges to balancing patient rights and physician responsibilities” express concerns about the Revised Uniform Anatomical Gift Act of 2006, and its potential impact on “appropriate end-of-life care”. Most physicians, ethicists and patients would agree that appropriate end of life care is based upon the expressed wishes of the deceased patient, and/or those of his or her family members, as to the appropriate institution and withdrawal of treatment, and, after death, the most appropriate disposition of remains. “Appropriate end of life care” is not solely a matter of clinical intervention, but involves, rather, family support, education and empowerment with regard to decision-making. When health professionals and family members work together to achieve this goal, there is no conflict between palliative care of the dying patient and the process of life-saving organ recovery. Once patient or family wishes are ascertained and acknowledged, there are clear pathways of treatment. The Revised Uniform Anatomical Gift Act, with its recently updated “Section 21” describes the process by which this may be accomplished in a manner which is ethically informed and supportive of autonomy in treatment and donation decision-making.
Much of the conflict described in the Article arises from a misreading of the statute, and perhaps some unfounded presumptions about how patients and their families weigh their end-of-life versus post-mortem decisions. First and foremost, the authors should understand that since the initial appearance of the 1968 Uniform Anatomical Gift Act, individuals have been accorded the statutory right to give their own bodies. Since 1968, if an individual failed to exercise that right while alive, the right has passed to family members and other statutorily named parties. It is corollary to the right to bury. This has been true in every state of the Union for forty years. The Revised UAGA of 2006 updates this right, by allowing an individual to name a health care representative as a person who makes the decision, a change which allows for patient autonomy in organ donation decision-making, in alignment with health care decision-making under the federal PSDA and state health care decisions legislation. This change was deliberately crafted, since, again contrary to the author’s contention, there were bioethicists, legal scholars in the fields of end-of-life decision-making, and critical care physicians such as the authors involved in the drafting of this Uniform legislation, at every step of the way.
Also contrary to the authors’ contention, there is no presumption of the intent to donate in either the Revised UAGA or any extant Gift Act statute. The Revised Act adds categories of people who may either authorize or deny the recovery or organs, in an effort to insure that those who had knowledge of the patient’s wishes have standing to make that decision. In 1968, there were fewer grandparent-led families; thus grandparents did not have standing to make a donation decision, yeah or nay, for their grandchildren. The Revised UAGA gives grandparents and other hitherto unrecognized persons in a caring relationship, the ability to make the decision in the absence of patient directive, or closer relatives. This in no way “presumes the intent to donate organs”, and could equally be read as giving more people who knew the donor the opportunity to say “no”.
Neither law nor best practices in end of life decision-making require instantaneous removal from life support, even in cases where the advance directive so directs. In fact, undeniably, treatment is often initiated notwithstanding the existence of a document that specifically prohibits it. This can be due to lack of availability of the document, misunderstanding of the document, or, even, sadly, lack of willingness to comply with the document. Even in the face of an available, unambiguous and document, physicians and hospitals routinely and correctly maintain ‘unauthorized’ vent support until family can gather, for example, or for the period of time it takes a loved one to understand the prognosis and diagnosis. Time is allowed for ethics committee review of circumstances. Time should also be allowed to determine the suitability of the patient for donation and to review the patient and family’s expressed or ascertained wishes concerning organ or tissue transplantation.
While some of the statements in this Article can be explained as simple lack of understanding, a few must be addressed as being blatantly incorrect, and baseless. In the section headed “The Revised UAGA and Advance Health Care Directives”, there is some discussion about “inflating the pool of prospective donors unpredictably”. While the meaning here is unclear, what is clear is that the revised UAGA has absolutely no impact on the preliminary medical suitability determination, a clinical determination based on objective standards and subject to numerous regulatory controls, and not “laxity”. For ethical reasons, this preliminary determination is made prior to approaching the family, so that the family is not presented with false hope of being able to give, and then later told “no thank you”.
Most alarming in this section, however, is the authors’ underlying premise that the only decisions of importance to the patient are the ones which these physicians can facilitate, i.e. the removal of mechanical ventilation. Those sections of the UAGA which have the potential to impact end-of-life care do so to protect the patient’s entire body of rights, not just their right to removal of treatment. There are numerous documented instances of families who were robbed of their ability to act on their loved ones donation wishes, due to premature and un-wished for removal from ventilation or other maintenance measures, from both deceased and dying patients. Yet the authors call the prospect of a pre-removal discussion with the family as “most disturbing”. For those who support patient autonomy, this fear of open discussion is “most disturbing”.
Studies have repeatedly shown that the process of donation provides genuine benefit to families at the immediate time of loss and for long periods thereafter. Thus, the organ and tissue donation process is a part of appropriate and dignified end of life care. Its palliative benefits go beyond the value of lives saved, honoring both the donor’s memory and the family for many years to come.
This comment is co-authored by Paul Schwab, Executive Director, Association of Organ Procurement Organizations.
Competing interests
None declared
The United States Revised Uniform Anatomical Gift Act (2006) and End-of-life Organ Procurement practices. Authors’ Response to Christina W. Strong, Esq.
Joseph Verheijde, Mayo Clinic Arizona & Department of Philosophy at Arizona State University, Tempe, AZ, USA
28 April 2008
The United States Revised Uniform Anatomical Gift Act (2006) and End-of-life Organ Procurement practices. Authors’ Response to Christina W. Strong, Esq.
Joseph L. Verheijde; Mohamed Y. Rady; Joan L. McGregor; Catherine Friederich-Murray.
We thank Christina W. Strong, Esq. for her interest in our article “The United States Revised Uniform Anatomical Gift Act (2006): new challenges to balancing patient rights and physician responsibilities.” We will address her comments, explaining the unintended consequences of end-of-life organ donation on US medical practice two years after the drafting of the Revised Uniform Anatomical Gift Act (UAGA).
Christina W. Strong: “…there is no conflict between palliative care of the dying patient and the process of life-saving organ recovery.”
Authors’ response:
The World Health Organization has a specific definition for palliative care [1]. The fundamental principle of palliative care is that the process of dying shall not be postponed nor shall it be hastened by actively expediting or shortening the dying process. The end-of-life practice of organ donation can do both: (1) Life supports systems are initiated or maintained for organ preservation in dying patients to postpone the dying process until organs can be surgically removed, and (2) the antemortem infusion of anticoagulant and vasodilator medications to preserve organs in the dying patients can actively shorten the dying process of donors.
Christina W. Strong: “Much of the conflict described in the Article arises from a misreading of the statute, and perhaps some unfounded presumptions about how patients and their families weigh their end-of-life versus post-mortem decisions. First and foremost, the authors should understand that since the initial appearance of the 1968 Uniform Anatomical Gift Act, individuals have been accorded the statutory right to give their own bodies. Since 1968, if an individual failed to exercise that right while alive, the right has passed to family members and other statutorily named parties.”
Authors’ response:
Referring to organ donations as postmortem decisions is misleading and deceptive to the general public. The process of organ donation begins before death. There are two types of organ donation.
1. Non–heart-beating organ donation (donation after cardiac death) begins before death. Antemortem interventions (vascular instrumentations, infusion of anticoagulants and vasodilators, etc.) are painful and traumatic to the dying patients and are performed at the end of life and before death. The United Network for Organ Sharing (UNOS) bylaw 145 (Appendix B Attachment III - DCD Recovery Protocol Model Elements) expands the donor pool to include persons with normal brain function, eg, patients with end-stage musculoskeletal disease, end-stage pulmonary disease, and high-level spinal cord injury[2]. Appendix B Attachment III - DCD Recovery Protocol Model Elements reverses circulatory arrest (2 to 5 minutes) and the death criteria with the use of cardiopulmonary bypass machines in donors for organ procurement [2]. Reanimation of both brain and heart functions in donors during organ recovery are suppressed by mechanical and pharmacologic interventions [3]. Under such conditions, organ donation directly violates the irreversibility requirement for the Uniform Determination of Death Act (UDDA 1981).
2. Heart-beating organ donation (donation after brain death) requires the determination of irreversible cessation of the entire brain (including brain stem) functions [4]. The determination of brain death for organ donation is performed with clinical diagnostic criteria to confirm irreversible apnea and coma [5]. Institutions vary in compliance with these clinical guidelines for the determination of brain death before organ procurement [6, 7]. Most problematic, when the clinical criteria of brain death are rigorously applied, more than 60% of heart-beating donors have no structural damage on brain autopsy [8] to verify irreversible cessation of brain-stem functions mandated by the Uniform Determination of Death Act. Cases of patients who are declared as clinically brain dead but who fully recover are increasingly being reported in the media [9, 10]. The 1981 President’s Commission Report on defining death emphasizes the determination of irreversibility of cessation of the entire brain (and brain-stem) functions in accordance with accepted medical standards [11]. One of the accepted medical standards is to verify the structural requirement for irreversibility of loss of entire brain function by demonstrating the absence of blood flow above the foramen magnum on 4-vessel cerebral angiography. This is rarely done before organ procurement.
Carelessness in developing and implementing criteria to declare circulatory or brain death also means that organ recovery can be the proximate cause of death in non–heart-beating or heart-beating donors. Under this condition, the end-of-life practice of organ donation becomes an act of physician-assisted death or euthanasia, which is illegal in all the states in the US except Oregon.
While alive, individuals have the right to opt-in for organ donation. They also have the right to produce advance directives that include the right to forego life-sustaining interventions. Nevertheless, the Revised UAGA requires initiation of such interventions against the patient’s directives. Furthermore, if the protection of individual autonomy is the primary driver for the enactment of the Revised UAGA, then the obligation to fully inform individuals about the criteria utilized by the transplant community for the determination of death and procurement procedures must also be fulfilled. There is also an obligation to inform the general public about the growing controversies within medical and scientific communities regarding the criteria that the transplant community uses and whether donors are really dead, in accordance with the Uniform Determination of Death Act [12, 13]. Thus far, public education on these issues is lacking, and little effort has been made to inform the public about the changes made within the Revised UAGA and the implications for advance directives that a person has already completed.
Christina W. Strong: “The Revised UAGA of 2006 updates this right, by allowing an individual to name a health care representative as a person who makes the decision, a change which allows for patient autonomy in organ donation decision-making, in alignment with health care decision-making under the federal PSDA and state health care decisions legislation. This change was deliberately crafted, since, again contrary to the author’s contention, there were bioethicists, legal scholars in the fields of end-of-life decision-making, and critical care physicians such as the authors involved in the drafting of this Uniform legislation, at every step of the way.”
Authors’ response:
There was no broad-based representation of stakeholders when Revised UAGA 2006 was drafted. The stakeholders were entities with primary and common interest to promote transplantation practice. Many well-known bioethicists (eg, Arthur Caplan), critical care professionals (eg, Michael DeVita), and palliative care specialists were never involved or consulted when the Revised UAGA was drafted [14]. The unintended consequences to the entire US medical practice and profession of drafting a specific law to serve special interest groups are becoming apparent with the passage of time. The vast majority of groups of different ethnicities, cultures, and religious affiliations as well as the medical community and professionals are unaware of the sweeping changes introduced by the Revised UAGA in organ donation and how they can influence diverse end-of-life practices [15, 16].
Christina W. Strong: “Also contrary to the authors’ contention, there is no presumption of the intent to donate in either the Revised UAGA or any extant Gift Act statute. The Revised Act adds categories of people who may either authorize or deny the recovery or organs, in an effort to insure that those who had knowledge of the patient’s wishes have standing to make that decision. In 1968, there were fewer grandparent-led families; thus grandparents did not have standing to make a donation decision, yeah or nay, for their grandchildren. The Revised UAGA gives grandparents and other hitherto unrecognized persons in a caring relationship, the ability to make the decision in the absence of patient directive, or closer relatives. This in no way “presumes the intent to donate organs”, and could equally be read as giving more people who knew the donor the opportunity to say “no”. Neither law nor best practices in end of life decision-making require instantaneous removal from life support, even in cases where the advance directive so directs. In fact, undeniably, treatment is often initiated notwithstanding the existence of a document that specifically prohibits it.” “Most alarming in this section, however, is the authors’ underlying premise that the only decisions of importance to the patient are the ones which these physicians can facilitate, i.e. the removal of mechanical ventilation. Those sections of the UAGA which have the potential to impact end-of-life care do so to protect the patient’s entire body of rights, not just their right to removal of treatment.”
Authors’ response:
The “undeniable” fact that life-sustaining interventions are administered against the patient’s wishes does not mean that it can be construed as either lawful or morally appropriate. Such an argument cannot be used to validate and justify the initiation of life support for the purpose of maximizing the potential for organ procurement when the patient has not indicated willingness to be an organ donor and has directed to not be placed on life support at the end of life.
Patient autonomy is embodied in advance directives and preferences about the use of life-support systems at the end of life. Section 14c overrides this autonomy. Organ donation is a 2-step process in the Revised UAGA.
(1) The first step of organ donation is the resuscitation of potential donors with life-support systems to preserve organs (medical measures necessary to keep organs viable for transplantation) until medical suitability is determined. The first step starts in section 14c and is performed with no consent unless there is a contrary intent. In the Revised UAGA section 14c comments, “A general direction in a power of attorney for health care or advance health-care directive that the patient does not wish to have life prolonged by the administration of life support systems should not be construed as an expression of a contrary intent.[17]” For the contrary intent to be valid, it must specifically address the use of life-support systems for organ-preservation purposes for possible donation. In the absence of contrary intent, an agreement on the use of life-support systems for organ preservation is presumed (and therefore the presumption of intent to donate). Section 21b permits the initiation and/or continuation of life support systems with no consent (i.e. presumed) in the dying patient for organ preservation until the conflict is resolved with advance directives.
The end-of-life decisions of importance to the patient that the physician can facilitate are beyond simply removing mechanical ventilation. The physician duty is to provide culturally sensitive and comprehensive end-of-life care to the dying patients and their families. The physician duty is to protect the patient’s best interest and prevent infliction of pain and suffering because of unwarranted invasive procedures being performed on the dying patients and to avoid causing traumatic experiences to families.
Life-support systems required for organ preservation are not restricted to mechanical ventilation. Life-support systems, as described in the article, include many interventions beyond mechanical ventilation.
a. Intubation of the trachea (if the patient is not already on mechanical ventilation)
b. Placement of invasive vascular catheters in blood vessels
c. Use of external mechanical cardiac thumpers for chest compression (in cardiac arrest) or artificial heart-lung machines (also known as cardiopulmonary bypass or extracorporeal membrane oxygenation)
d. Administration of medications to preserve organs
e. Invasive organ sampling or biopsy
In 2006, the Committee on Increasing Rates of Organ Donation declared the ethical acceptability of presumed consent for life-support systems for organ perseveration [18]. This is particularly applicable for in-hospital or out-of-hospital sudden cardiac death. The above procedures are performed in many states under the umbrella of organ-preservation protocols without the family’s consent. Section 14c provides the legal precedence to perform these procedures on the human body for donation purposes and without consent.
(2) The second step of organ donation (after completion of medical examination and suitability) is the surgical removal and recovery of organs from the donor, which requires expressed consent.
The presumption of intent to donate through multiple default rules within the Revised UAGA has also provided the legal support to perpetuate the ethically questionable approach of organ procurement organizations (OPO) toward families to obtain consent for organ donation [19]. Since 2006, OPO have adopted the presumptive approach to consent for organ donation, which violates many ethical principles of the practice of medicine [20]. Staff members from the OPO approach family members or persons listed in section 9a with the presumption that potential organ donors agree to donate their organs in the absence of first-person consent. Consent for organ donation becomes a coercive rather than a voluntary process for the families of dying patients. Family members are often forced to agree for organ donation through psychological exploitation adding to the burden of dealing with the loss of loved ones’ [20].
Christina W. Strong: “While some of the statements in this Article can be explained as simple lack of understanding, a few must be addressed as being blatantly incorrect, and baseless. In the section headed “The Revised UAGA and Advance Health Care Directives”, there is some discussion about “inflating the pool of prospective donors unpredictably”. While the meaning here is unclear, what is clear is that the revised UAGA has absolutely no impact on the preliminary medical suitability determination, a clinical determination based on objective standards and subject to numerous regulatory controls, and not “laxity”.
Authors’ response:
The Revised UAGA has a profound and absolute impact on the determination of medical suitability and its consequences. The Revised UAGA assigns the OPO as the sole authority to make such a determination in section 14c. This OPO authority has translated into bedside clinical practice—overriding the attending physician who is responsible for the patient’s care. In-house OPO staff [21] and team huddle [22] programs allow staff from the OPO to have direct access to patients and their records in hospitals to determine medical management and suitability for donation of potential organ donors before end-of-life decisions are made by the attending physicians and without families’ knowledge or consent. The so-called “best practices” of the OPO [9] can sentence patients with potentially salvageable conditions to death as organ donors. The OPO’s lax criteria of medical suitability have proven to be harmful, with fatal consequences, in certain instances, to organ recipients [23-25]. Preventable death of organ recipients because of transmission of infections and malignancies from donors has increased as a result of laxity in performing the assigned medical examination and evaluation required in the Revised UAGA.
Christina W. Strong: “Studies have repeatedly shown that the process of donation provides genuine benefit to families at the immediate time of loss and for long periods thereafter. Thus, the organ and tissue donation process is a part of appropriate and dignified end of life care. Its palliative benefits go beyond the value of lives saved, honoring both the donor’s memory and the family for many years to come.”
Authors’ response:
The negative psychological consequences and moral distress from end-of-life practices in organ donation have been well documented in the published literature. Some health care providers and professionals involved with end-of-life practices in organ donation have viewed that practice as a form of killing and euthanasia [26, 27]. The published literature proves that grief and bereavement of families are not relieved but are exacerbated by experiences related to the process of organ donation at the end of life. Families’ wishes to protect their loved one’s body from physical mutilation by organ donation stimulate tension between the notions of “gift of life,” as supported by transplant policy, and “sacrifice” of the body, which must be made if organ donation is to proceed [28]. It is no surprise that 50% to 90% of deceased donors’ families suffer severe depression, posttraumatic stress disorders, complicated bereavement reactions, and recurring traumatic memories that can last for several months after real exposure to the organ-donation experience [29-31].
It appears that the Revised UAGA has created a legal sanctuary for the procurement organizations to proliferate questionable end-of-life practices in organ donation in the US. The Revised UAGA overrides personal autonomy in advance directives and individuals’ rights to cultural and religious end-of-life practices. As we concluded in the original article, a public debate on the ethical, legal, and medical controversies about end-of-life organ procurement for transplantation practice is necessary. Because of the serious consequences on traditional American society values, the public debate should involve a panel with diverse backgrounds and broad interests from the medical community, the general public, and the US Congress.
We remind the readers of the Fourteenth Amendment, United States Constitution, Year (1868)
No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.
References
1. World Health Organization. World Health Organization; WHO definition of palliative care http://www.who.int/cancer/palliative/definition/en/. Accessed April 25, 2008.
2. United Network For Organ Sharing (UNOS). Bylaws Appendix B Attachment III - DCD Recovery Protocol Model Elements http://www.unos.org/policiesandBylaws2/bylaws/UNOSByLaws/DOCs/bylaw_145.doc. Accessed April 25, 2008.
3. Dejohn C, Zwischenberger JB. Ethical implications of extracorporeal interval support for organ retrieval (EISOR). ASAIO J. 2006;52:119-122.
4. National Conference of Commissioners on Uniform State Laws. The Uniform Determination of Death Act 1981. http://www.law.upenn.edu/bll/ulc/fnact99/1980s/udda80.htm. Accessed April 25, 2008.
5. The Quality Standards Subcommittee of the American Academy of Neurology. Practice parameters for determining brain death in adults (summary statement). Neurology. 1995;45:1012-1014
6. Greer DM, Varelas PN, Haque S, Wijdicks EFM. Variability of brain death determination guidelines in leading US neurologic institutions. Neurology. 2008;70:284-289.
7. Laureys S, Fins JJ. Are we equal in death?: Avoiding diagnostic error in brain death. Neurology. 2008;70:e14-e-15.
8. Wijdicks E, Pfeifer E. Neuropathology of brain death in the modern transplant era. Neurology. 2008;70:1234-1237.
9. Morales N. 'Dead' man recovering after ATV accident. Doctors said he was dead, and a transplant team was ready to take his organs -- until a young man came back to life. Dateline NBC News. http://www.msnbc.msn.com/id/23768436/.
10. Gower T. Fatal flaw. Some doctors suggest that the modern definition of 'death' is wrong -- and that the mistake is costing lives. When is a person dead -- or dead enough? The Boston Globe. March 9, 2008. http://www.boston.com/bostonglobe/ideas/articles/2008/03/09/fatal_flaw?mode=PF. Accessed April 25, 2008.
11. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death: A Report on the Medical, Legal and Ethical Issues in the Determination of Death. . http://www.bioethics.gov/reports/past_commissions/index.html. Accessed April 25, 2008.
12. Bernat JL. Are Organ Donors after Cardiac death Really Dead? J Clin Ethics. 2006;17:122-132.
13. Truog RD. Brain death - too flawed to endure, too ingrained to abandon. J Law Med Ethics. 2007;35:273-281.
14. DeVita MA, Caplan AL. Caring for Organs or for Patients? Ethical Concerns about the Uniform Anatomical Gift Act (2006). Ann Intern Med. 2007;147:876-879.
15. Brown G. Reading the Signs of Death: A Theological Analysis. The National Catholic Bioethics Quarterly 2007;7:467-476.
16. Kunin J. Brain death: revisiting the rabbinic opinions in light of current medical knowledge. Tradition. 2004;38:48-62.
17. National Conference of Commissioners on Uniform State Laws. Revised Uniform Anatomical Gift Act (2006) and Amendment to Section 21 (2007) http://www.anatomicalgiftact.org/DesktopDefault.aspx?tabindex=0&tabid=1 Accessed April 25, 2008.
18. Committee on Increasing Rates of Organ Donation-Board on Health Sciences Policy-Institute of Medicine. Organ Donation: Opportunities for Action. Washington, D.C.: The National Academies Press; 2006.
19. Zink S, Wertlieb S. A Study of the Presumptive Approach to Consent for Organ Donation: A New Solution to an Old Problem. Crit Care Nur. 2006;26:129-136.
20. Truog RD. Consent for Organ Donation -- Balancing Conflicting Ethical Obligations. N Engl J Med. 2008;358:1209-1211.
21. Salim A, Brown C, Inaba K, et al. Improving Consent Rates for Organ Donation: The Effect of an Inhouse Coordinator Program. J Trauma. 2007;62:1411-1415.
22. Bratton SL, Kolovos NS, Roach ES, McBride V, Geiger JL, Meyers RL. Pediatric Organ Transplantation Needs: Organ Donation Best Practices. Archives of Pediatrics Adolescent Medicine. 2006;160:468-472.
23. Grady D. Four Transplant Recipients Contract H.I.V.The New York Times. November 13, 2007. New York. http://www.nytimes.com/2007/11/13/health/13cnd-organ.html?ei=5070&en=ffa821297cf35184&ex=1195621200&adxnnl=1&emc=eta1&adxnnlx=1195067396-LZOm+YH1F8IzwmMhYNQQHw. Accessed April 25, 2008.
24. MSNBC.com. Undiagnosed cancer passed to transplant recipients. Newsday Monday, March. 31, 2008. MSNBC Local News/Long Island, NY. http://www.msnbc.msn.com/id/23866961/. Accessed March 31, 2008.
25. Harbell JW, Dunn TB, Fauda M, John DG, Goldenberg AS, Teperman LW. Transmission of Anaplastic Large Cell Lymphoma via Organ Donation After Cardiac Death. Am J Transplant. 2008; 8 238-244.
26. Mandell MS, Zamudio S, Seem D, et al. National evaluation of healthcare provider attitudes toward organ donation after cardiac death. Crit Care Med. 2006;34:2952–2958.
27. D'Alessandro AM, Peltier JW, Phelps JE. Understanding the Antecedents of the Acceptance of Donation After Cardiac Death by Health Care Professionals. Crit Care Med. 2008;36:1075-1081.
28. Sque M, Long T, Payne S, Allardyce D. Why relatives do not donate organs for transplants: ‘sacrifice’ or ‘gift of life’? J Adv Nurs. 2008;61:134-144.
29. Soriano-Pacheco JA, Lopez-Navidad A, Caballero F, Leal J, Garcia-Sousa S, Linares JL. Psychopathology of bereavement in the families of cadaveric organ donors. Transplant Proc. 1999;31:2604-2605.
30. Kesselring A, Kainz M, Kiss A. Traumatic Memories of Relatives Regarding Brain Death, Request for Organ Donation and Interactions with Professionals in the ICU. Am J Transplant. 2007;7:211-217.
31. Merchant SJ, Yoshida EM, Lee TK, Richardson P, Karlsbjerg KM, Cheung E. Exploring the psychological effects of deceased organ donation on the families of the organ donors. Clin Transplant. 2008;22:doi:10.1111/j.1399-0012.2008.00790.x.
Response to Verheijde, et al. Article regarding the Revised UAGA
24 April 2008
The authors of the article “United States Revised Uniform Anatomical Gift Act (2006): New challenges to balancing patient rights and physician responsibilities” express concerns about the Revised Uniform Anatomical Gift Act of 2006, and its potential impact on “appropriate end-of-life care”. Most physicians, ethicists and patients would agree that appropriate end of life care is based upon the expressed wishes of the deceased patient, and/or those of his or her family members, as to the appropriate institution and withdrawal of treatment, and, after death, the most appropriate disposition of remains. “Appropriate end of life care” is not solely a matter of clinical intervention, but involves, rather, family support, education and empowerment with regard to decision-making. When health professionals and family members work together to achieve this goal, there is no conflict between palliative care of the dying patient and the process of life-saving organ recovery. Once patient or family wishes are ascertained and acknowledged, there are clear pathways of treatment. The Revised Uniform Anatomical Gift Act, with its recently updated “Section 21” describes the process by which this may be accomplished in a manner which is ethically informed and supportive of autonomy in treatment and donation decision-making.
Much of the conflict described in the Article arises from a misreading of the statute, and perhaps some unfounded presumptions about how patients and their families weigh their end-of-life versus post-mortem decisions. First and foremost, the authors should understand that since the initial appearance of the 1968 Uniform Anatomical Gift Act, individuals have been accorded the statutory right to give their own bodies. Since 1968, if an individual failed to exercise that right while alive, the right has passed to family members and other statutorily named parties. It is corollary to the right to bury. This has been true in every state of the Union for forty years. The Revised UAGA of 2006 updates this right, by allowing an individual to name a health care representative as a person who makes the decision, a change which allows for patient autonomy in organ donation decision-making, in alignment with health care decision-making under the federal PSDA and state health care decisions legislation. This change was deliberately crafted, since, again contrary to the author’s contention, there were bioethicists, legal scholars in the fields of end-of-life decision-making, and critical care physicians such as the authors involved in the drafting of this Uniform legislation, at every step of the way.
Also contrary to the authors’ contention, there is no presumption of the intent to donate in either the Revised UAGA or any extant Gift Act statute. The Revised Act adds categories of people who may either authorize or deny the recovery or organs, in an effort to insure that those who had knowledge of the patient’s wishes have standing to make that decision. In 1968, there were fewer grandparent-led families; thus grandparents did not have standing to make a donation decision, yeah or nay, for their grandchildren. The Revised UAGA gives grandparents and other hitherto unrecognized persons in a caring relationship, the ability to make the decision in the absence of patient directive, or closer relatives. This in no way “presumes the intent to donate organs”, and could equally be read as giving more people who knew the donor the opportunity to say “no”.
Neither law nor best practices in end of life decision-making require instantaneous removal from life support, even in cases where the advance directive so directs. In fact, undeniably, treatment is often initiated notwithstanding the existence of a document that specifically prohibits it. This can be due to lack of availability of the document, misunderstanding of the document, or, even, sadly, lack of willingness to comply with the document. Even in the face of an available, unambiguous and document, physicians and hospitals routinely and correctly maintain ‘unauthorized’ vent support until family can gather, for example, or for the period of time it takes a loved one to understand the prognosis and diagnosis. Time is allowed for ethics committee review of circumstances. Time should also be allowed to determine the suitability of the patient for donation and to review the patient and family’s expressed or ascertained wishes concerning organ or tissue transplantation.
While some of the statements in this Article can be explained as simple lack of understanding, a few must be addressed as being blatantly incorrect, and baseless. In the section headed “The Revised UAGA and Advance Health Care Directives”, there is some discussion about “inflating the pool of prospective donors unpredictably”. While the meaning here is unclear, what is clear is that the revised UAGA has absolutely no impact on the preliminary medical suitability determination, a clinical determination based on objective standards and subject to numerous regulatory controls, and not “laxity”. For ethical reasons, this preliminary determination is made prior to approaching the family, so that the family is not presented with false hope of being able to give, and then later told “no thank you”.
Most alarming in this section, however, is the authors’ underlying premise that the only decisions of importance to the patient are the ones which these physicians can facilitate, i.e. the removal of mechanical ventilation. Those sections of the UAGA which have the potential to impact end-of-life care do so to protect the patient’s entire body of rights, not just their right to removal of treatment. There are numerous documented instances of families who were robbed of their ability to act on their loved ones donation wishes, due to premature and un-wished for removal from ventilation or other maintenance measures, from both deceased and dying patients. Yet the authors call the prospect of a pre-removal discussion with the family as “most disturbing”. For those who support patient autonomy, this fear of open discussion is “most disturbing”.
Studies have repeatedly shown that the process of donation provides genuine benefit to families at the immediate time of loss and for long periods thereafter. Thus, the organ and tissue donation process is a part of appropriate and dignified end of life care. Its palliative benefits go beyond the value of lives saved, honoring both the donor’s memory and the family for many years to come.
This comment is co-authored by Paul Schwab, Executive Director, Association of Organ Procurement Organizations.
Competing interests
None declared
The United States Revised Uniform Anatomical Gift Act (2006) and End-of-life Organ Procurement practices. Authors’ Response to Christina W. Strong, Esq.
28 April 2008
The United States Revised Uniform Anatomical Gift Act (2006) and End-of-life Organ Procurement practices. Authors’ Response to Christina W. Strong, Esq.
Joseph L. Verheijde; Mohamed Y. Rady; Joan L. McGregor; Catherine Friederich-Murray.
We thank Christina W. Strong, Esq. for her interest in our article “The United States Revised Uniform Anatomical Gift Act (2006): new challenges to balancing patient rights and physician responsibilities.” We will address her comments, explaining the unintended consequences of end-of-life organ donation on US medical practice two years after the drafting of the Revised Uniform Anatomical Gift Act (UAGA).
Christina W. Strong: “…there is no conflict between palliative care of the dying patient and the process of life-saving organ recovery.”
Authors’ response:
The World Health Organization has a specific definition for palliative care [1]. The fundamental principle of palliative care is that the process of dying shall not be postponed nor shall it be hastened by actively expediting or shortening the dying process. The end-of-life practice of organ donation can do both: (1) Life supports systems are initiated or maintained for organ preservation in dying patients to postpone the dying process until organs can be surgically removed, and (2) the antemortem infusion of anticoagulant and vasodilator medications to preserve organs in the dying patients can actively shorten the dying process of donors.
Christina W. Strong: “Much of the conflict described in the Article arises from a misreading of the statute, and perhaps some unfounded presumptions about how patients and their families weigh their end-of-life versus post-mortem decisions. First and foremost, the authors should understand that since the initial appearance of the 1968 Uniform Anatomical Gift Act, individuals have been accorded the statutory right to give their own bodies. Since 1968, if an individual failed to exercise that right while alive, the right has passed to family members and other statutorily named parties.”
Authors’ response:
Referring to organ donations as postmortem decisions is misleading and deceptive to the general public. The process of organ donation begins before death. There are two types of organ donation.
1. Non–heart-beating organ donation (donation after cardiac death) begins before death. Antemortem interventions (vascular instrumentations, infusion of anticoagulants and vasodilators, etc.) are painful and traumatic to the dying patients and are performed at the end of life and before death. The United Network for Organ Sharing (UNOS) bylaw 145 (Appendix B Attachment III - DCD Recovery Protocol Model Elements) expands the donor pool to include persons with normal brain function, eg, patients with end-stage musculoskeletal disease, end-stage pulmonary disease, and high-level spinal cord injury[2]. Appendix B Attachment III - DCD Recovery Protocol Model Elements reverses circulatory arrest (2 to 5 minutes) and the death criteria with the use of cardiopulmonary bypass machines in donors for organ procurement [2]. Reanimation of both brain and heart functions in donors during organ recovery are suppressed by mechanical and pharmacologic interventions [3]. Under such conditions, organ donation directly violates the irreversibility requirement for the Uniform Determination of Death Act (UDDA 1981).
2. Heart-beating organ donation (donation after brain death) requires the determination of irreversible cessation of the entire brain (including brain stem) functions [4]. The determination of brain death for organ donation is performed with clinical diagnostic criteria to confirm irreversible apnea and coma [5]. Institutions vary in compliance with these clinical guidelines for the determination of brain death before organ procurement [6, 7]. Most problematic, when the clinical criteria of brain death are rigorously applied, more than 60% of heart-beating donors have no structural damage on brain autopsy [8] to verify irreversible cessation of brain-stem functions mandated by the Uniform Determination of Death Act. Cases of patients who are declared as clinically brain dead but who fully recover are increasingly being reported in the media [9, 10]. The 1981 President’s Commission Report on defining death emphasizes the determination of irreversibility of cessation of the entire brain (and brain-stem) functions in accordance with accepted medical standards [11]. One of the accepted medical standards is to verify the structural requirement for irreversibility of loss of entire brain function by demonstrating the absence of blood flow above the foramen magnum on 4-vessel cerebral angiography. This is rarely done before organ procurement.
Carelessness in developing and implementing criteria to declare circulatory or brain death also means that organ recovery can be the proximate cause of death in non–heart-beating or heart-beating donors. Under this condition, the end-of-life practice of organ donation becomes an act of physician-assisted death or euthanasia, which is illegal in all the states in the US except Oregon.
While alive, individuals have the right to opt-in for organ donation. They also have the right to produce advance directives that include the right to forego life-sustaining interventions. Nevertheless, the Revised UAGA requires initiation of such interventions against the patient’s directives. Furthermore, if the protection of individual autonomy is the primary driver for the enactment of the Revised UAGA, then the obligation to fully inform individuals about the criteria utilized by the transplant community for the determination of death and procurement procedures must also be fulfilled. There is also an obligation to inform the general public about the growing controversies within medical and scientific communities regarding the criteria that the transplant community uses and whether donors are really dead, in accordance with the Uniform Determination of Death Act [12, 13]. Thus far, public education on these issues is lacking, and little effort has been made to inform the public about the changes made within the Revised UAGA and the implications for advance directives that a person has already completed.
Christina W. Strong: “The Revised UAGA of 2006 updates this right, by allowing an individual to name a health care representative as a person who makes the decision, a change which allows for patient autonomy in organ donation decision-making, in alignment with health care decision-making under the federal PSDA and state health care decisions legislation. This change was deliberately crafted, since, again contrary to the author’s contention, there were bioethicists, legal scholars in the fields of end-of-life decision-making, and critical care physicians such as the authors involved in the drafting of this Uniform legislation, at every step of the way.”
Authors’ response:
There was no broad-based representation of stakeholders when Revised UAGA 2006 was drafted. The stakeholders were entities with primary and common interest to promote transplantation practice. Many well-known bioethicists (eg, Arthur Caplan), critical care professionals (eg, Michael DeVita), and palliative care specialists were never involved or consulted when the Revised UAGA was drafted [14]. The unintended consequences to the entire US medical practice and profession of drafting a specific law to serve special interest groups are becoming apparent with the passage of time. The vast majority of groups of different ethnicities, cultures, and religious affiliations as well as the medical community and professionals are unaware of the sweeping changes introduced by the Revised UAGA in organ donation and how they can influence diverse end-of-life practices [15, 16].
Christina W. Strong: “Also contrary to the authors’ contention, there is no presumption of the intent to donate in either the Revised UAGA or any extant Gift Act statute. The Revised Act adds categories of people who may either authorize or deny the recovery or organs, in an effort to insure that those who had knowledge of the patient’s wishes have standing to make that decision. In 1968, there were fewer grandparent-led families; thus grandparents did not have standing to make a donation decision, yeah or nay, for their grandchildren. The Revised UAGA gives grandparents and other hitherto unrecognized persons in a caring relationship, the ability to make the decision in the absence of patient directive, or closer relatives. This in no way “presumes the intent to donate organs”, and could equally be read as giving more people who knew the donor the opportunity to say “no”. Neither law nor best practices in end of life decision-making require instantaneous removal from life support, even in cases where the advance directive so directs. In fact, undeniably, treatment is often initiated notwithstanding the existence of a document that specifically prohibits it.” “Most alarming in this section, however, is the authors’ underlying premise that the only decisions of importance to the patient are the ones which these physicians can facilitate, i.e. the removal of mechanical ventilation. Those sections of the UAGA which have the potential to impact end-of-life care do so to protect the patient’s entire body of rights, not just their right to removal of treatment.”
Authors’ response:
The “undeniable” fact that life-sustaining interventions are administered against the patient’s wishes does not mean that it can be construed as either lawful or morally appropriate. Such an argument cannot be used to validate and justify the initiation of life support for the purpose of maximizing the potential for organ procurement when the patient has not indicated willingness to be an organ donor and has directed to not be placed on life support at the end of life.
Patient autonomy is embodied in advance directives and preferences about the use of life-support systems at the end of life. Section 14c overrides this autonomy. Organ donation is a 2-step process in the Revised UAGA.
(1) The first step of organ donation is the resuscitation of potential donors with life-support systems to preserve organs (medical measures necessary to keep organs viable for transplantation) until medical suitability is determined. The first step starts in section 14c and is performed with no consent unless there is a contrary intent. In the Revised UAGA section 14c comments, “A general direction in a power of attorney for health care or advance health-care directive that the patient does not wish to have life prolonged by the administration of life support systems should not be construed as an expression of a contrary intent.[17]” For the contrary intent to be valid, it must specifically address the use of life-support systems for organ-preservation purposes for possible donation. In the absence of contrary intent, an agreement on the use of life-support systems for organ preservation is presumed (and therefore the presumption of intent to donate). Section 21b permits the initiation and/or continuation of life support systems with no consent (i.e. presumed) in the dying patient for organ preservation until the conflict is resolved with advance directives.
The end-of-life decisions of importance to the patient that the physician can facilitate are beyond simply removing mechanical ventilation. The physician duty is to provide culturally sensitive and comprehensive end-of-life care to the dying patients and their families. The physician duty is to protect the patient’s best interest and prevent infliction of pain and suffering because of unwarranted invasive procedures being performed on the dying patients and to avoid causing traumatic experiences to families.
Life-support systems required for organ preservation are not restricted to mechanical ventilation. Life-support systems, as described in the article, include many interventions beyond mechanical ventilation.
a. Intubation of the trachea (if the patient is not already on mechanical ventilation)
b. Placement of invasive vascular catheters in blood vessels
c. Use of external mechanical cardiac thumpers for chest compression (in cardiac arrest) or artificial heart-lung machines (also known as cardiopulmonary bypass or extracorporeal membrane oxygenation)
d. Administration of medications to preserve organs
e. Invasive organ sampling or biopsy
In 2006, the Committee on Increasing Rates of Organ Donation declared the ethical acceptability of presumed consent for life-support systems for organ perseveration [18]. This is particularly applicable for in-hospital or out-of-hospital sudden cardiac death. The above procedures are performed in many states under the umbrella of organ-preservation protocols without the family’s consent. Section 14c provides the legal precedence to perform these procedures on the human body for donation purposes and without consent.
(2) The second step of organ donation (after completion of medical examination and suitability) is the surgical removal and recovery of organs from the donor, which requires expressed consent.
The presumption of intent to donate through multiple default rules within the Revised UAGA has also provided the legal support to perpetuate the ethically questionable approach of organ procurement organizations (OPO) toward families to obtain consent for organ donation [19]. Since 2006, OPO have adopted the presumptive approach to consent for organ donation, which violates many ethical principles of the practice of medicine [20]. Staff members from the OPO approach family members or persons listed in section 9a with the presumption that potential organ donors agree to donate their organs in the absence of first-person consent. Consent for organ donation becomes a coercive rather than a voluntary process for the families of dying patients. Family members are often forced to agree for organ donation through psychological exploitation adding to the burden of dealing with the loss of loved ones’ [20].
Christina W. Strong: “While some of the statements in this Article can be explained as simple lack of understanding, a few must be addressed as being blatantly incorrect, and baseless. In the section headed “The Revised UAGA and Advance Health Care Directives”, there is some discussion about “inflating the pool of prospective donors unpredictably”. While the meaning here is unclear, what is clear is that the revised UAGA has absolutely no impact on the preliminary medical suitability determination, a clinical determination based on objective standards and subject to numerous regulatory controls, and not “laxity”.
Authors’ response:
The Revised UAGA has a profound and absolute impact on the determination of medical suitability and its consequences. The Revised UAGA assigns the OPO as the sole authority to make such a determination in section 14c. This OPO authority has translated into bedside clinical practice—overriding the attending physician who is responsible for the patient’s care. In-house OPO staff [21] and team huddle [22] programs allow staff from the OPO to have direct access to patients and their records in hospitals to determine medical management and suitability for donation of potential organ donors before end-of-life decisions are made by the attending physicians and without families’ knowledge or consent. The so-called “best practices” of the OPO [9] can sentence patients with potentially salvageable conditions to death as organ donors. The OPO’s lax criteria of medical suitability have proven to be harmful, with fatal consequences, in certain instances, to organ recipients [23-25]. Preventable death of organ recipients because of transmission of infections and malignancies from donors has increased as a result of laxity in performing the assigned medical examination and evaluation required in the Revised UAGA.
Christina W. Strong: “Studies have repeatedly shown that the process of donation provides genuine benefit to families at the immediate time of loss and for long periods thereafter. Thus, the organ and tissue donation process is a part of appropriate and dignified end of life care. Its palliative benefits go beyond the value of lives saved, honoring both the donor’s memory and the family for many years to come.”
Authors’ response:
The negative psychological consequences and moral distress from end-of-life practices in organ donation have been well documented in the published literature. Some health care providers and professionals involved with end-of-life practices in organ donation have viewed that practice as a form of killing and euthanasia [26, 27]. The published literature proves that grief and bereavement of families are not relieved but are exacerbated by experiences related to the process of organ donation at the end of life. Families’ wishes to protect their loved one’s body from physical mutilation by organ donation stimulate tension between the notions of “gift of life,” as supported by transplant policy, and “sacrifice” of the body, which must be made if organ donation is to proceed [28]. It is no surprise that 50% to 90% of deceased donors’ families suffer severe depression, posttraumatic stress disorders, complicated bereavement reactions, and recurring traumatic memories that can last for several months after real exposure to the organ-donation experience [29-31].
It appears that the Revised UAGA has created a legal sanctuary for the procurement organizations to proliferate questionable end-of-life practices in organ donation in the US. The Revised UAGA overrides personal autonomy in advance directives and individuals’ rights to cultural and religious end-of-life practices. As we concluded in the original article, a public debate on the ethical, legal, and medical controversies about end-of-life organ procurement for transplantation practice is necessary. Because of the serious consequences on traditional American society values, the public debate should involve a panel with diverse backgrounds and broad interests from the medical community, the general public, and the US Congress.
We remind the readers of the Fourteenth Amendment, United States Constitution, Year (1868)
No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.
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Competing interests
none