One can easily find a sensationalized story about organ donation in the media. With news story hooks such as “The dark side of organ donation,”[2] “Patient wakes up as doctors get ready to remove organs,”[3] “A body donated to science—but used to test bombs,”[4] and “Stolen heads shine a light on body donation,”[5] it is not surprising that the average person may feel skeptical about the industry. In fact, the authors’ home state of Arizona has contributed to such perceptions.

Eye-Catching Headlines

The Biological Resource Center Inc. was a body donation company located in Phoenix, Arizona, that—some donors thought—conducted medical and scientific research on cadavers. In reality, a 2014 raid of the grounds by the FBI revealed donor bodies that were “mishandled, abused, desecrated, and sold for profit.”[6] In 2019, the civil suit filed by the families of these donors against the owner of Biological Resource Center Inc., Stephen Gore (emphasis clearly added—we couldn’t have chosen a better last name), was settled for $58 million.

However, Arizona may be faring better than other states related to the facts and figures of organ donation. Arizona is said to have a higher than average donor-to-candidate ratio, making it “easier” to get an organ transplant than other states such as Alabama, where more than 30% of candidates remain on a waitlist for five years or more.[7] Nationwide, the data surrounding organ donation seems even brighter. September 9, 2023 marked one year since the United States reached the incredible milestone of completing one million organ transplants.[8] Further, in each of the past twelve years, we have seen new annual records of the number of organ donors and transplant recipients.[9]

Positive national trends aside, criticism of organ donation procurement remains. As of March 2024, ten organ procurement organizations (“OPOs”) are rumored to be under federal investigation for overbilling the federal government for services that are reimbursable by the Centers for Medicare and Medicaid Services.[10] In fact, OPOs across the country have been under congressional scrutiny for years, and not just for poor billing practices. In 2022, the Senate Finance Committee found that “thousands of organs donated each year wind up discarded…” with “some found abandoned in airports.”[11] The Senate reports also found that OPOs nationwide failed to complete basic blood type testing and infectious disease testing between donors and recipients, leading 249 transplant recipients to develop diseases from their donors and more than a quarter of said recipients dying between the years 2008 and 2015.[12] The Committee on Finance report concludes: “It’s clear this system needs reform badly.”[13]

While the purpose of this article is not to discuss the trends among states related to the success and failures of organ donation, this article will mention briefly recent news from Tulsa, Oklahoma, where producers are working on a documentary to highlight the plight of Ascension St. John Medical Center (“St. John”) patients currently on the waiting list for a kidney transplant.[14] Oklahoma is another state, alongside Alabama, wherein demand far surpasses supply for transplants with an average wait time for kidney transplants at approximately twenty-two months and about 213 people waiting for a transplant at St. John alone.[15] The staff at St. John hope that “Confessions of a Good Samaritan”[16] will encourage people to consider organ donation despite these bleak facts and figures.

The Estate Planning Attorney: The Backbone of the Team

Many estate planning attorneys ask about their role in the conversation with clients surrounding donation. Myths and misconceptions about organ donation will remain, as well as client concerns regarding whether to donate their organs. Advisors can assist clients in making an informed decision by being informed themselves.

Keeping a Finger on the Pulse of the Uniform Anatomical Gift Act

Arizona codified the Uniform Anatomical Gift Act (“UAGA”) from federal law under the Arizona Revised Statutes in 2006, which became effective in 2007.[17] Regardless of the state of domicile, all states have a similar body of law that governs the making, amending, and revoking of anatomical gifts, both during a principal’s life and after his or her death, all of which are modeled off of the UAGA, originally enacted in 1968 and revised in 1987 and further revised in 2006.[18] The overall goal of the UAGA is to establish and regulate the processes and policies related to organ donation, including how a principal can either elect or refuse to donate his or her organs upon their death and how a principal’s agent can have the authority to donate organs on behalf of the principal at his or her death.[19]

The UAGA defines an “anatomical gift” as a “donation of all or part of a human body to take effect after the donor’s death for the purpose of transplantation, therapy, research or education.”[20] It further defines the “document of gift” in relation to organ donation as a “donor card or other record that is used to make an anatomical gift.”[21] An example of this “document of gift” isan advanced health care directive.

The Heart of the Matter: Opt-In Versus Opt-Out

All fifty states—each of which have adopted the UAGA in some form[22]—maintain the presumption that a person does not consent to the donation of their organs, tissues, or eyes in the event of their death, unless he or she has designated otherwise in writing.[23] In other countries, such as, for example, Belgium, Italy, Poland, and Spain,[24] the system is an “opt-out” system, meaning the presumption is that a person does agree to donation of their organs, tissues, or eyes unless they have designated a clear refusal otherwise in writing.[25] Attorneys should understand when drafting the ways in which a client can “opt-in” to organ donation in their respective states. Each state has a state registry that manages the donation and procurement of organs, and such registry also allows an election for wishes related to organ donation through a designation on a donor’s driver’s license. The focus of this article is designations made in an advanced health care directive (which we will refer to herein as the health care power of attorney or “HCPOA”).

A Hands-On Approach to Choosing an Agent

Arguably the most important part of executing a HCPOA is counseling clients on their agent nominations and agent powers. We often advise clients to choose an agent who clearly understands their health care and end of life wishes and who will, in a time of intense emotion, make a decision aligned with the client’s wishes regardless of pressure from others who may have differing opinions. Clients often find it relieving to know they can memorialize their wishes in a legal document to avoid confusion and can give their agent ultimate legal authority in making these tough decisions.

In considering who will be named as an agent, clients must also understand what agents are empowered to do based on the statutory framework that gives HCPOA documents their “teeth” (Did you know you can donate those, too?). We find it most helpful to explain to clients that while their HCPOA provides instructions and designates their agent as the person who has the power to carry out those instructions, the document is not meant to create mandates on agents, but rather to provide them with immunity when carrying out the principal’s instructions.[26] In essence, the principal is providing guidance or instruction, empowering the agent to act, and protecting the agent from the consequences of acting (provided such actions are made in good faith).

If clients are still wary about selecting an agent, it may be helpful to educate them on the statutory default when no such elections have been made. The UAGA has determined priority for decision-makers for organ donations in the event that there is no agent appointed. The order of priority is as follows: (1) an agent at the time of death who could have otherwise made an anatomical gift while the decedent was living, (2) a spouse of the decedent, (3) adult children of the decedent, (4) parents of the decedent, (5) adult siblings of the decedent, (6) adult grandchildren of the decedent, (7) grandparents of the decedent, (8) an adult who exhibited “special care and concern” for the decedent, (9) the persons who were acting as guardian of the decedent’s body at the time of death, and finally, (10) any other person who has the authority to dispose of the decedent’s body.[27]

Estate planning attorneys that have counseled just one family with complex relationships understand that the default priority statutes create the possibility of intense conflict, and, in some cases, a complete breakdown of the family unit. For example, a client may be unmarried and have three adult children with differing opinions about the proper course of action. The children would create a “class” of members entitled to decision-making authority for their parent. When there is a disagreement on which decision should be made, things get complicated. Specifically for organ donation, if there is an objection among class members, a gift can be either made or refused only by a majority vote of the members who are reasonably available to vote.[28] While the UAGA states that any conflicts related to a donation or HCPOA should be addressed “as expeditiously as possible,”[29] the time it takes to resolve conflict and ambiguity may render a donation that was the wish of the donor to be ineffective. This is, again, another reason why it is so important that we, as attorneys informing and advising clients, are aware of the actual procedures and potential problems that may arise after the client initials next to a dispositive paragraph on their HCPOA.

The Bare Bones of Organ Donation

From a drafter’s perspective, counseling your client to make the right agent choices and explaining the power and authority given to said agent seems sufficient. However, in practice, organ donation is not nearly that straightforward. In January 2023, the authors spoke with Kat and Jared Alvarado, both Funeral Directors and Embalmers in charge of the Willed Body Program at the University of Arizona (“WBP”), about the reality of organ donation. The WBP uses whole-body donors to educate medical students at the College of Medicine, with a focus on anatomy and dissection. As opposed to other private donation organizations, like ScienceCare and the Southwest Institute for Bio-Advancement, the WBP is a non-profit organization that emphasizes the education and practice of life-saving procedures over research and transplant donations. Kat and Jared strive to provide complete transparency regarding the whole-body donation process in order to avoid misconceptions about organ donation and ensure that donors, and their families, fully understand the process of whole-body donation and what their bodies will be used for.

Kat and Jared emphasized that the donation of body parts or a whole body is situational, and the chances of using such parts or whole body in a transplant scenario is very rare. Some clients are concerned that they may be too old or sick for donating. Organ donation is not always a medical possibility, regardless of how interested the principal may be in donation. “You have to die or be injured in very specific circumstances to be eligible for transplant or therapeutic donation.” That said, the oldest organ donor as of May 4, 2021 was 95 years of age.[30] Moreover, donation for research and science is broader and donations may be accepted from donors in various stages of life.

Kat and Jared also clarified the misconception that medical providers may let someone die faster to use his or her whole body, or body parts, for organ donation. In fact, potential donors in a hospital setting are not evaluated for eligibility to donate until they are at or near death, and the hospital is the one that must make a request with the State registry.[31] The hospital must wait for the State registry to confirm status as a donor before they can assess the person for eligibility to donate.[32] The physician who attends the potential donor at his or her death and the physician who determines the time of death are both ineligible from participating in the procedures for removing or transplanting a body part from the donor.[33] The removal or transplantation process is lengthy because there are many checks and balances between the medical providers and the donee organization that would not allow a doctor to preemptively decide on the viability of organ donation when someone is admitted to the hospital. Further, collaboration with the decedent’s family members and agents is crucial in the organ donation process. Like the WBP, most medical providers will not proceed with organ donation over strong opposition by the agent or family member of the decedent. Clients should therefore discuss their wishes with their agent and family and to choose an agent that will follow their wishes and act in the client’s best interests.

One other key misconception that Kat and Jared addressed is the aftermath of organ donation. If a donation is made through the State registry, the costs of retrieval and transport of any organs or parts is covered by the registry; however, the final disposition of the body is not covered. This means that contrary to popular belief, if a client donates his or her body parts to a private organization or through the State registry, the costs associated with burial or cremation are not paid for by the recipient organization. Some clients may be incentivized to donate because they believe that the donation will also extend to their final disposition. Thus, advisors should inform clients to research and consider the organization’s process from designation to donation.

Clients should also research their organization of choice because not all organizations are made the same. Kat and Jared clarified, for example, that the WBP will not conduct an autopsy to reveal the cause of death or more detailed information related to the disease or illness of the donor. Different organizations will have services that may or may not be included. The intentions behind a client’s choice or refusal to donate are crucial for advisors to best advocate for and counsel their clients regarding organ donation.

Shouldering the Responsibility

Advisors may best serve their clients through robust conversations about their legacies throughout the consultation. Understanding the client’s ultimate goals regarding organ donation and the way those goals will be addressed within the framework of the law is part of that process. Further, the attorney must consider multiple alternatives because organ donation is often situation-specific. The reality of organ donation starts with and the advisor as an advocate for their clients, to promote sound and informed decision-making and to encourage their clients to communicate their wishes to their family members and their carefully-selected agents.

---

[1]Riley L. Arter is an Associate at Tiffany & Bosco, P.A. in Phoenix, Arizona and dedicates her practice to estate planning and probate and trust administration. She obtained a Bachelor of Science from the University of Arizona and Juris Doctor from the University of Arizona James E. Rogers College of Law. She serves as a board member on the Maricopa County Bar Association’s Estate Planning, Probate, and Trust Section and is a current candidate for a Certified Advisor in Philanthropy designation through the American College. Ashley L. Case is a Shareholder at Tiffany & Bosco, P.A. and focuses her practice on estate planning, tax, and probate and trust administration. She obtained a Bachelor of Science from Arizona State University, Juris Doctor from Chapman University School of Law, and LL.M. in Taxation from Boston University School of Law. She has been designated as a certified specialist in Estate & Trust Law by the State Bar of Arizona. The authors would like to acknowledge and thank Grace A. Koester, Juris Doctor Candidate at Arizona State University Sandra Day O’Connor College of Law, for her research assistance with this article.

[2] Laura Meckler, The Dark Side of Organ Donation (Aug. 12, 2003), https://www.cbsnews.com/news/the-dark-side-of-organ-donation/.

[3] Sydney Lupkin, Patient Wakes Up as Doctors Get Ready to Remove Organs (July 8, 2013), https://abcnews.go.com/Health/patient-wakes-doctors-remove-organs/story?id=19609438.

[4] Rozini Sini, A body donated to science—but used to test bombs (Aug. 6, 2019), https://www.bbc.com/news/world-us-canada-49198405.

[5] Amanda Loudin, Stolen heads shine light on body part donation (March 10 2022), https://www.webmd.com/a-to-z-guides/news/20220310/stolen-heads-shine-light-on-body-part-donation.

[6] Elisha Fieldstadt, Dismembered limbs sewn together like ‘Frankenstein’ at body-parts donation center, FBI found (July 26, 2019), https://www.nbcnews.com/news/us-news/dismembered-body-parts-sewn-together-frankenstein-donation-center-fbi-found-n1035131.

[7] Molly Duerig, Arizona fares better than most in challenging environment for organ transplants (Dec. 27, 2019), https://www.azcentral.com/story/news/local/arizona-health/2019/12/27/arizona-fares-better-than-most-for-organ-transplant-waiting-lists/4017173002/.

[8] United States reaches milestone of one million organ transplants, Organ Procurement & Transplantation Network (U.S. Department of Health & Human Services) (Sep. 9, 2022), https://optn.transplant.hrsa.gov/news/united-states-reaches-milestone-of-one-million-organ-transplants/.

[9] Id.

[10] Amber Strong, Criticism surrounding organ procurement groups continues (March 13, 2024), https://www.10news.com/criticism-surrounding-organ-procurement-groups-continues.

[11] Taylor Harvey, Wayden Statement at Finance Committee Hearing on the Urgent Need to Address Failures in the Organ Transplant System (Aug. 3, 2022), https://www.finance.senate.gov/chairmans-news/wyden-statement-at-finance-committee-hearing-on-the-urgent-need-to-address-failures-in-the-organ-transplant-system.

[12] Id.

[13] Id.

[14] Douglas Braff, ‘Really discouraged’: Hospital staff talks long kidney transplant waitlist (March 13, 2024), https://www.kjrh.com/news/local-news/really-discouraged-hospital-staff-talks-long-kidney-transplant-waitlists.

[15] Id.

[16] Id.

[17] Ariz. Rev. Stat. Ann. tit. 36, Ch. 7, art. 3, Refs & Annos.

[18]Uniform Anatomical Gift Act, Legal Information Institute, Cornell Law School (Dec. 2021), https://www.law.cornell.edu/wex/uniform_anatomical_gift_act.

[19] See generally Britta Martinez, Uniform Anatomical Gift Act (1968), Embryo Project Encyclopedia (Aug. 5, 2013), https://embryo.asu.edu/pages/uniform-anatomical-gift-act-1968.

[20] Unif. Anatomical Gift Act § 2(3) (2006) [hereinafter 2006 UAGA].

[21] 2006 UAGA § 2(6).

[22] 50^th Anniversary of the Uniform Anatomical Gift Act, Uniform Law Commission, https://www.uniformlaws.org/aboutulc/spotlightulc. (last visited Aug. 13, 2023).

[23] Why Isn’t Everyone Automatically an Organ, Eye and Tissue Donor?, Donate Network of Arizona (March 9, 2021), https://www.dnaz.org/why-isnt-everyone-automatically-an-organ-eye-and-tissue-donor/.

[24] Arshad et al., Comparison of organ donation and transplantation rates between opt-out and opt-in systems, International Society of Nephrology (March 15, 2019), https://www.kidney-international.org/article/S0085-2538(19)30185-1/fulltext (citing Table 1 Snapshot of OECD countries used in the analysis with donation rates and transplantation activity (per million population)).

[25] Supra note 10.

[26] 2006 UAGA § 18(a).

[27] 2006 UAGA § 9(a)(1)-(10)

[28] 2006 UAGA § 9(b).

[29] 2006 UAGA § 21(b).

[30] 95-Year-Old Cecil Lockhart Becomes Oldest Organ Donor in U.S. History, KDKA-TV News Staff (CBS News) (May 11, 2021), https://www.cbsnews.com/pittsburgh/news/95-year-old-cecil-lockhart-becomes-oldest-organ-donor-in-u-s-history/.

[31] 2006 UAGA § 14(a).

[32] 2006 UAGA § 14(c).

[33] 2006 UAGA § 14(i).