By Howard, Richard J Cornell, Danielle L; Koval, Charles B
Signed donor cards clearly demonstrate the donor’s intention to donate organs after death. In many states, this donation cannot be rescinded by the next of kin, and organs can be recovered from the donor even if the family objects. The family usually does not object if the donor has signed an organ donor card, especially if the donor had discussed the issue with the family. In some situations, however, the family objects to donation despite the signed organ donor card. If the organ procurement organization pursues donation, adverse publicity and even legal action are possible. It can be a challenge for organ procurement personnel to deal with families who object to donation in the face of a signed organ donor card in a manner that will lead to successful organ recovery without adverse consequences. This article describes 4 cases where the donor had a signed organ donor card but the family initially objected to donation. Ultimately organs were recovered from 3 of these donors. (Progress in Transplantation. 2008;18:13-16) The recent and ongoing efforts to increase the number of people on organ donor registries throughout the United States will challenge organ procurement organizations (OPOs) to deal with what may be new circumstances. The shortage of donor organs for transplantation is the main problem confronting transplant centers worldwide. In the past few years, the federal government has undertaken a few initiatives to get OPOs to recover organs from donors that they would not have considered previously and to recover as many organs as possible.
In October 2006, the Health Resources and Services Administration (HRSA) launched a program, Donate Life America Donor Decision Collaborative, with the objective of adding 40 million people to donor registries throughout the United States. Currently 60 million donors are registered, and the HRSA goal is to bring that number to 100 million. In many states, people can indicate they want to be a donor on their driver’s license at the time of renewal.1,2 Currently 48 states have donor registries, and 32 of these registries are web based (Kathy Giery, Donor Designation Collaborative, personnal communication). The registry lists persons who have signed organ donor cards, allowing OPOs to identify people who wish to donate.
The laws in many states provide that if a person has indicated that he or she wants to be an organ donor, the family cannot override that decision at the time of death. Some states have a statutory provision that permits a donor to recant a written intent to donate by making a written or verbal statement to family members, in which case the donation is not pursued. Otherwise, OPOs can recover organs from such donors even if the family objects. Efforts should be made to have potential donors tell their families that they have signed an organ donor card and want to donate. In July 2003, Florida enacted the Nick Oelrich Gift of Life Act, which states that the family cannot override the wishes of the donor, and that a signed donor card or indication of desire to donate on a person’s driver’s license creates a presumption of the donor’s intent.’ In Florida, however, if the donor tells 2 people that he or she no longer wants to donate, the effect of the signed donor card or indication on the driver’s license is rescinded. Consent from the donor’s survivors is not required.
Usually families do not object to donation if they are shown that the individual has signed an organ donor card or otherwise indicated his or her wish to be an organ donor. In some cases, however, the donor’s family may still object. This situation can pose unique challenges for OPO personnel.
Retrospective Case Reviews
Between January 1, 2004, and December 31,2006, LifeQuest Organ Recovery Services approached 815 potential organ donors of whom 159 (19.5%) had signed donor cards for first-person consent. In 4 cases, the potential donors had previously signed an organ donor card but the families objected to donation. The institutional review board at the University of Florida approved this review.
Case 1
A 20-year-old man was declared brain dead after a self-inflicted gunshot wound to the head. He had signed an organ donor card. His parents were divorced. His mother lived out of state and happened to be a lawyer. She initially objected to organ donation and threatened to go to the news media if the OPO persisted in wanting to recover his organs. OPO personnel spent considerable time with her and explained the Florida law regarding the respect to be afforded a person’s direction regarding organ donation. With time, she did change her mind and agreed with her son’s choice to be an organ donor. Further discussions revealed that she wanted to make sure her son’s death was not a homicide, and she was concerned that organ recovery might impede the ability to determine the cause of death. His organs were recovered and transplanted.
Case 2
An 18-year-old man was brain dead as a result of a gunshot wound to the head. The family was angry and felt that the physicians and hospital were giving up on their efforts to save their son. His driver’s license indicated he wanted to be an organ donor and his name appeared on the state of Florida donor registry. The OPO coordinator approached the family and discussed organ donation with them. Initially the family was not ready to discuss donation. Later, the OPO coordinator again discussed organ donation with them and pointed out that their loved one’s driver’s license indicated he wanted to donate his organs for transplantation. Nevertheless, the family strongly objected to organ donation despite their son’s expressed desire to do so.
The OPO coordinator spent a considerable amount of time explaining organ donation and the applicable state law to the family, but they still opposed recovery of their son’s organs. Finally, a copy of the actual statute was brought to the family so they could read it for themselves. They read the law and found a provision of the law that states that if the individual verbally tells 2 family members he has changed his mind and no longer wants to be an organ donor, the signed donor card is rescinded. The family then told the coordinator that the donor had so indicated while he was alive and therefore the family’s decision opposing organ donation was final. We do not know, of course, whether the donor actually had indicated to his family that he no longer wanted to be an organ donor, but in that situation the OPO chose to no longer pursue organ recovery.
Case 3
A 28-year-old male sheriffs deputy was severely injured in a motor vehicle accident. He had signed an organ donor card and had told his family of his desire to donate. He was ultimately declared brain dead, and the OPO coordinator approached his family about donation. Family members, led by his father, indicated they knew about his desire to be a donor but they were adamantly opposed to organ donation. They said it was against their religion. They had initially been told about organ donation by their neurosurgeon who was not trained in best practices to approach families regarding donation. Two hours later, the OPO coordinator together with a more experienced senior OPO supervisor, approached the family again and told them about the patient’s wishes and state law regarding respecting the wishes of a donor. The donor’s father eventually consented to organ donation. The OPO no longer asks the next of kin for consent when appropriate documentation of intent to donate is available. After the donation, the donor’s father thanked the OPO coordinator for helping them respect their son’s wishes.
Case 4
A 54-year-old woman underwent carotid endarterectomy. She proceeded to brain death because of an unfortunate outcome from the operation. Her family was totally unprepared for her death. They were notified that she was brain dead by the intensive care unit (ICU) physician. Shortly thereafter, the OPO coordinator approached the family, and they were told that their mother had signed an organ donor card. This was the first time the family had heard about their mother’s desire to be an organ donor. The family initially opposed organ donation. Furthermore, the social worker in the ICU strongly supported the family and urged the OPO coordinator not to pursue organ donation in this case. The family left the hospital to arrange for their mother’s funeral. A senior OPO staff member called the daughter and discussed her mother’s hospital course and her indication of her desire to be an organ donor. The daughter decided to return to the hospital for further discussions with an OPO senior staff member and ultimately agreed to organ donation. The donor’s daughter is now a strong advocate for organ donation. She has signed an organ donor card and has shared this decision with her adult children.
Discussion
Since the landmark book discussing family relationships in organ donation written by Simmons et al,4 many articles about family interactions in consent and other aspects of organ and tissue donation have been published.5″9 Use of first-person consent is relatively new in organ and tissue donation. Honoring the wishes that the donor expressed while alive now has legal backing in Florida and several other states.
These cases all presented a challenge for the OPO because of the initial opposition to donation from the families. In the end, only 1 of the 4 families persisted. These cases were useful to OPO personnel in learning how to confront similar situations in the future. The Uniform Anatomic Gift Act (UAGA) of 1968 provided for first-person consent.10 The UAGA did not address, however, whether the donor’s desire to become an organ donor could be overridden by the surviving family members. The UAGA was passed into law in all 50 states. The UAGA was revised in 1987.10 The procedures associated with first-person consent were clarified, but the family’s ability to override the wishes of the decedent was not clearly addressed. Only 26 states, however, have passed this revision. The UAGA was revised in 2006, and the first-person consent portion (section 8) was strengthened further.12 This revision clearly states that family members or other survivors cannot alter or revise the wishes of the donor. It is too early to know how many states will eventually pass this latest revision. Those states that have passed the 2006 revision have the legal backing to recover organs from donors with firstperson consent even if the family objects. Because this version of the law was not in effect at the time, the OPOs in Florida worked together to obtain passage of the Nick Oelrich Gift of Life Act in 2003, which greatly strengthened first-person consent in Florida.
In most states, a properly executed organ donor card or indication on a person’s driver’s license of the desire to donate is sufficient in and of itself to permit organ recovery. Just as a will detailing how a person wants to dispose of his or her assets after death cannot be changed by surviving family members, so a donor’s directive cannot be changed after death by the survivors. Many OPOs are reluctant to rely solely on a donor’s directive and still seek approval of the family because of the concern about unfavorable publicity and the lack of widespread knowledge and awareness of the legal effect of donor directives. We historically sought approval from the donor’s family for organ donation as occurred in the first 2 cases presented here. As we gained experience with Florida law, we ceased seeking written permission from the family. The signed donor card is sufficient. We do notify the family or next of kin about the directive, as a properly conveyed change in the donor’s desire would supercede the donor’s directive according to the Florida statute as exercised by the family in case 2. We try to cultivate a relationship with the family to ensure a positive donation experience, for follow-up care of the donor family, and to obtain a reliable medical and social history.
The death of virtually all organ donors is unexpected and tragic. It is not surprising that their families are distraught and in a state of shock. The decision they make shortly after being told of the untimely death of a loved one may well not be the one they would make if they had more time for reflection. The first, third, and fourth cases showed us the value of approaching families again if their initial decision is against organ donation. Although we no longer seek to obtain the consent of survivors, we make every attempt to have them understand and accept the wishes of the decedent. In fact, almost all families do. In only a small number of families that object to donation are more time and a second or third discussion required. How the discussion is framed is also important. We no longer ask family members to sign any document when we have documentation of a donor’s intent. We adopt an approach that says to the family that their loved one has agreed to organ donation and we intend to honor his wish. We inform them how the process will take place and how long it will take, and we provide other information that families have a right to know.
The second case was the only one where we failed to get consent from the family to recover organs. We thought if we showed them applicable Florida law, they would better understand the situation and withdraw their objection. We suspect, but cannot prove, that the family read the section of the law describing how an individual can reverse a previously expressed intent to donate. After reading the law, the family told the OPO that in fact the patient had verbally rescinded his desire to be an organ donor. There was little we could do in the face of a united family under these circumstances, and no organ recovery was made.
The fourth case was particularly difficult because not only did the family initially object to donation, but a social worker involved in the case was upset by the manner in which the family was approached regarding donation. The social worker’s support of the OPO’s mission and confidence in their processes was significantly damaged. This case again points out that positive effects can come about as a result of a second discussion with the family. It also demonstrates that it can be helpful to separate notification of the family that their loved one has died from the notification that the donor had signed an organ donor card.
This fourth case also stresses the importance of educational programs for the ICU care team. The nurses, physicians, and social worker became intimately involved with the family and did not want the family to have any more anguish by having the OPO recover the organs against the family’s wishes. Furthermore, many of the ICU, medical, and nursing staff indicated that they did not think most of the public understands that when they say yes to donation in the driver’s license bureau that it means organs can be recovered despite their loved one’s grief. The importance of public and professional education related to donor directives cannot be overstated. OPO personnel must be sensitive not only to the family’s feelings but also to those of the ICU providers. They must take care to explain to them why the OPO is doing what it does; above all else, the OPO speaks for the donor. This education of the ICU staff is better done in advance of any actual donation so that it is separated from what can be an emotionally charged situation.
The OPO’s pursuit of organ donation despite the refusal of the family can result in negative publicity. One can only imagine what a creative reporter could do with a story depicting the OPO as recovering organs despite the objection of the grieving family. Then relations between the OPO and the ICU staff can be threatened, as the fourth case so clearly illustrates. The ICU staff may have bonded with the family and not the donor, who most likely was always unconscious and noncommunicative. The OPO must always try to have the best relations with the ICU staff in these cases, because a negative relationship can adversely affect future organ donation. It is important that the OPO educate the ICU staff on a regular basis about signed organ donor cards and the implications they have for donation despite the family’s objection. We always attempt to have a team, huddle between the OPO and the healthcare team caring for the patient before approaching the family. The team huddle should include reference to the presence of a signed donor card and review of the implications of the document. This gives the OPO another chance to educate the ICU staff about the implications of a signed organ donor card.
The public should also be better educated about the implications of signing an organ donor card. Probably few are told that organs can be recovered despite any objections of their family. Some who sign donor cards may believe that the family still has to give consent. Knowing that their intention to donate overrides the family’s wishes may cause some individuals to refrain from signing donor cards. It may also spur them to inform their families that they want to be donors in order that their wishes are respected when they die.
There are also potentially negative consequences for the OPO if it fails to recover organs from a donor who has a signed organ donor card. First is an ethical issue. No one but the OPO may be speaking for the donor who has indicated his or her desires. The donor clearly indicated that he wished to be an organ donor upon his death. Just as courts do not allow a family to change a will disposing of a dead person’s assets, we should not allow the family to alter the individual’s specified desire to be an organ donor. A donor card is similar to a living will and other end-of-life documents that define the care that someone wants to receive. Although unlikely, does the OPO expose itself to later legal action if it does not recover the organs of someone with an organ donor card? Could the estate file a lawsuit claiming that the wishes of the donor were not respected by the OPO? Could a patient waiting for an organ sue the OPO when he learns that organs were not recovered, and he was high on the list to receive the organ from that donor? And what if he died because he did not receive a lifesaving organ and his family brought suit against the OPO? There is no case law addressing these issues. The Florida statues do not provide any clear penalties for failure to recover organs. It is possible, however, that some regulatory or civil liability could result.
So how does an OPO avoid these potential negative outcomes if it insists on recovering organs from someone with a signed organ donor card? The OPO should be ready to recover organs from these donors despite the family’s wishes; otherwise the organ donor card becomes meaningless. The OPO must be prepared in advance for any negative publicity that might occur. The hospital’s administration or legal department should be contacted to ensure they understand the issues involved and raise no objections. The OPO should be aware of possible long-term effects on the family, although those effects can be virtually impossible to identify. OPO staff must also consider the impact on future relations with the hospital and ICU staff, and how many organs are likely to be transplanted from the donor. We believe that the ICU staff must fully understand the law and that the primary concern should be carrying out the patient’s wishes. We believe donor advocacy is one of the important missions of an OPO. Keeping this principle in the forefront when making difficult administrative decisions will assist in making those decisions and will be in keeping with an OPO’s ultimate mission-to recover organs for transplantation. References
1. HRSA Web site, http://www.hrsa.gov. Accessed January 21, 2008.
2. OrganDonor.gov: access to US government information on organ and tissue donation and transplantation. http://www .organdonor.gov. Accessed January 21, 2008.
3. The Nick Oelrich Gift of Life Act, Laws of Florida, Chapter 2003-046, amending sections 765.512 and 765.514, Florida Statutes. http://www.myfloridahouse.gov/sections/BUls/billsdetail. aspx?BillId=9501 Accessed December 18, 2007.
4. Simmons RG, Klein SD, Simmons RL. Gift of Life: Family, and Societal Dynamics. New York, NY: Wiley; 1977.
5. Atkins L, Davis K, Holtzman SM, Durand R, Decker PJ. Family discussion about organ donation among African Americans. Prog Transplant. 2003;13(1):28-32.
6. Morgan SE, Harrison TR, Long SD, Afifi WA, Stephenson MT, Reichert T. Family discussions about organ donation: how the media influences opinions about donation decisions. Clin Transplant. 2005;19(5):674-682.
7. Thompson T1, Robinson JD, Kenny RW. Family conversations about organ donation. Prog Transplant. 2004;14(1):49-55.
8. Siminoff L, Mercer MB, Graham G, Burant C. The reasons families donate organs for transplantation: implications for policy and practice. J Trauma. 2007;62(4):969-78.
9. Beard J, Ireland L, Davis N, Barr J. Tissue donation; what does it mean to families? Prog Transplant. 2002;12(1):42-48.
10. Uniform Anatomical Gift Act (1968). http://www2.sunysuffolk. edu/pecorip/SCCCWEB/ETEXTS/DeathandDying_ TEXT/UAGA.htm. Accessed Decemberl8, 2007.
11. Uniform Anatomical Gift Act (1987). http://www.law.upenn. edu/ bll/archives/ulc/fnact99/uaga87.htm. Accessed December 18,2007.
12. Revised Uniform Anatomical Gift Act (2006). http://www. anatomicalgiftact.org/DesktopDefault.aspx?tabindex=l&tabid =63. Accessed December 18, 2007.
Richard J. Howard, MD, Danielle L Cornell, RN, BSN, Charles B. Koval, JD
LifeQuest Organ Recovery Services
(RJH, DLC) and Shands Legai Serv
ices (CBK), Shands Hospital at the
University of Florida, Gainesville
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Copyright North American Transplant Coordinators Organization Mar 2008
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