Local resident delves into organ donation laws after situation involving sister

By Sheila Harris [email protected]

In Missouri, every hospital is required, by law, to enter into an agreement or affiliation with an organ procurement organization (OPO) in order to coordinate and facilitate organ donations and transplants.

Most people are familiar with the altruistic aspects of organ donation: how donations save lives at no cost to donors (who won’t continue using their organs anymore).

Robert Kesterson, of rural Barry County, agrees that organ donations save lives. However, he believes that the average person is unaware of the laws governing the organ procurement process, itself, as they pertain to the death of hospitalized patients.  

Kesterson’s eyes were opened to that process after his sister Brenda Kesterson’s death in February 2018, while she was a patient at CoxHealth in Springfield. There, Kesterson said, his sister’s remains were held against the wishes of her family and without their knowledge, until a representative from an OPO had an opportunity to look his sister’s body over for donatable parts.

“Brenda died of natural causes,” Kesterson said. “She and I had talked about end-of-life issues some time before her death, and she’d told me that she did not want to be an organ donor, nor to have her remains [altered] in any way, other than what was required for her funeral and burial.”

After his sister’s death, which occurred shortly before 2 p.m., Kesterson informed Fraker Funeral Home in Marshfield  — where Brenda had a pre-arranged burial plan — of her death. He and other family members then asked permission from CoxHealth staff to remain with Brenda’s body until it was transported to the funeral home.

“They wouldn’t let us,” Kesterson said. “We were told that she might need to be seen by the coroner, and that it could take a while.”

Without options, the Kesterson family left the hospital at about 2:30, with plans to meet again at the funeral home in Marshfield the next morning.

“Before I left Brenda’s room, I told the nurse on duty that Brenda did not want to be an organ or tissue donor, and that nothing was to be removed from her body other than medical equipment,” Kesterson said. “The nurse told me she understood.”

At 7 p.m. that night, Kesterson discovered from the director at Fraker Funeral Home that his sister’s body had still not been released from the hospital to the funeral home.

“I called my other sister, Peggy, who told me she’d received a call at 5 p.m. from someone requesting to remove a tissue sample from Brenda’s body,” Kesterson said. “We traced the call to Mid-America Transplant, an organization we hadn’t heard of at the time.”

Kesterson, a retired police chief, quickly gathered more information.

“I called Cox Hospital and demanded that my sister’s body be released immediately,” he said. “That’s when I learned that Brenda’s body had been removed to Saving Sight.”

The non-profit organization serves as a repository for donated eyes and corneas.

Although Kesterson said he accomplished the release of his sister’s body from the hospital, the experience left a bad taste in his mouth.

“When a decedent is held at the hospital against the wishes of the family, without the family’s prior knowledge, while an organ procurement organization attempts to get permission [for organ donation], it’s disrespectful both to the decedent and to the next-of-kin,” Kesterson said.

Over the next weeks, Kesterson began a journey of discovery regarding organ donation laws and the relationship between hospitals and OPOs.

Per Centers for Medicare and Medicaid (CMS) rules, there are currently 55 OPOs that serve the entire United States. Two serve Missouri: Mid-America Transplant, which serves the eastern half of the state, plus the City of Springfield; and Midwest Transplant, which serves the western half of the state, including Cassville and Monett.

Laws regulating organ donation can be found in Missouri Revised Statutes, Chapter 194.

Not only are all hospitals required to be affiliated with an OPO, they are also required by law to report all deaths or pending deaths to OPOs as soon as they occur, or appear about to occur. According to statute 194.260, failures to report deaths or approaching deaths to OPOs can result in “administrative sanctions.” Those sanctions also prospectively apply to emergency responders, including law enforcement, firefighters, paramedics and others serving in an official capacity who arrive at the scene of a crime or an accident.

Lori Pace, Manager of Regional Operations for Mid-America Transplant, represents hospitals in Springfield, Branson, Bolivar and many other facilities within her designated territory. Death reports from hospitals, said Pace, are matched against organ donation referrals that are made by those hospitals.

“If they don’t match, we let the hospitals know,” Pace said. “When we receive a referral from a hospital that a prospective organ donor has died, or is near death, we send a family support coordinator and hospital partner specialist to that hospital.”

Pace said the purpose of the OPO representatives in the hospital is two-fold: to determine the patient’s eligibility for being a donor, and to approach and support families in their decision to donate a loved one’s organs.

“Before we disturb a family unnecessarily, we want to determine whether a person is even qualified to be a donor,” Pace said.

Donations of organs, tissues and eyes or corneas can be accepted, if a patient qualifies, Pace said.

“Less than 1% of patients pass in such a way that organ donation is possible,” Pace said. “And, less than 14% are eligible to be a tissue donor.”

If a patient is still alive, but is being supported by a ventilator when her team arrives in the hospital, “we’re there to see how it goes,” Pace said.

Death, by Missouri’s legal definition, can occur in two ways: loss of brain function, or loss of cardiac and pulmonary (circulatory) function.

A brain death, which, in a hospital setting, must be declared by a doctor, is more straightforward. Circulatory deaths can be a bit trickier for organ donation purposes.

“If a family chooses to remove life support, death can occur within minutes, or take much longer,” Pace said. 

A delay of two hours can mean a prospective donor’s organs are no longer viable, she said.

“A time of death is usually called five minutes after cardiac and pulmonary functions cease,” Pace said.

However, in order for organs and tissues to remain viable for donation, the patient must be re-attached to a ventilator, where they are again monitored for signs of life for another five minutes.

“And another five minutes after that, just to confirm,” Pace said. “We cannot be wrong about a patient’s death. There are ethical lines we do not cross.”

The number of organ donations after circulatory death (DCDs) are on the rise in the United States after a final rule released by CMS in 2020 warned that underperforming OPOs would be decertified.

In a Fall 2023 edition of “Hospital Executive Insights,” published by The Organ Donation and Transplantation Alliance (The Alliance), hospitals were told to expect a higher level of OPO activity in their facilities as a result of the CMS rule.

“The highest performing OPOs are involved earlier in the ICUs, well before brain death is declared or the decision to withdraw care is made,” The Alliance stated. “Your OPO may become more insistent on converting potential cases into authorized cases.”

Some of those potential cases, according to The Alliance, would include donors age 75 and older, and those with HIV and Hepatitis.

The Alliance stated that procuring viable organs in the face of family opposition and obtaining the release of bodies from coroners and medical examiners were considered part of an “OPO strategy.”

While The Alliance, of which Mid-America Transplant and Midwest Transplant are members, appears to boil organ procurement down to a competitive numbers game, Pace said she and her family-support teams represent “the human side” of donation.

Pace, a donor-mom herself, lost her 13-month-old son to an irreversible blain bleed and subsequent brain-stem death in 2004.

“We were approached by a representative of Mid-America, and my husband and I chose to donate our son’s heart, liver and kidneys,” Pace said. “It helped us in that time of trauma, something we had no control over, to know that three other lives were saved. Losing him was hard, but donation helped provide some meaning and hope for the future.”

Pace said she also lost her stepson, last fall, to cardiac arrest at age 31, and his body, too, was responsible for saving three other lives.

Pace now works for Mid-America to support other families in crisis in hospitals. She said most of the members of her family support teams have personal stories similar to her own.

There are currently over 100,000 people in the United States on a waiting list for an organ donation and transplant, said Pace.

According to stats from opodata.org, Missouri currently has a waiting list of 2,141 people in need of a transplant. Sixteen of those people die every month, while waiting, the site states.

Mid-America Transplant has organ procurement agreements with 124 hospitals in 84 counties in Missouri, northeast Arkansas and southern Illinois.

Organ transplants can be performed at 10 locations in Missouri, including five hospitals in Kansas City, one in Columbia and four in St. Louis.

The federal Uniform Anatomical Gift Act (UAGA) governs the donation of organs. First drafted in 1968, the UAGA was revised in 1987, then again in 2006.

In 1984, U.S. Congress passed the National Organ Transplant Act, which established the Organ Procurement and Transplantation Network (OPTN) to maintain a national registry for organ matching.

Donors can opt in to donate their organs online through the Missouri registry, or in person at the local Department of Motor Vehicles.

Worthy of note, when a person gives their consent to donate organs, their decision cannot be later over-ruled by family members.

If a person does not want to donate organs, a refusal can be a bit more complicated. Detailed information pertaining to refusals can be found at https://health.mo.gov/living/organdonor/pdf/removal_form.pdf.

If a person has neither opted in nor opted out of organ donation, their body becomes a prospective candidate for organ removal if they die in a hospital. No expressed consent and no proof of refusal equate to implied consent in the eyes of OPOs.

If a patient dies in the hospital, OPOs have set lengths of time in which organs are still viable to reach out to next-of-kin for permission to remove organs. Hospitals are under legal obligation to hold bodies until OPOs have a reasonable opportunity to obtain that familial permission.

Robert Kesterson wishes he had been aware of these practices before his sister’s passing.

“My final communication from CoxHealth was a letter informing me that my problem was with Mid-America Transplant, not CoxHealth,” he said. “I disagree. My family left Brenda’s remains under the care and custody of CoxHealth, and no one else. They were responsible for the unpleasantness we experienced, in my opinion. I asked them how they could justify holding human remains against the wishes of the family, in violation of Missouri Revised Statute 194.119 (the ‘Right of Sepulcher’), which clearly states that next-of-kin has ownership of the remains.”

The hospital had no definitive answer for him, Kesterson said.

“I figured out that my family’s experience was not out of the ordinary, but was perhaps standard operating procedure,” Kesterson said.

Again, Kesterson emphasized that he’s not against organ donation.

“I’d just like to see legislation changed so that hospitals are required to inform patients and their families, upon admittance, about the practices and presence of OPOs in the hospital.”

The Cassville Democrat reached out by email to CoxHealth for information about hospital protocol for organ procurement, but was referred directly to Mid-America Transplant.

Mercy Cassville did not respond to a request for information by press time.