Program integrity challenges in the organ procurement and transplant space have led to national legislative reform. Palliative care providers are seeking to help families understand and address these issues to ensure goal-concordant care delivery.
Palliative care patients and their families navigate a host of legal, medical and logistical considerations when navigating complex organ donation and procurement processes. Families of organ donors often do not have a palliative care advocate to assist in voicing their loved one’s wishes or concerns.
Palliative care providers have a critical role to play in advocating for patient and family goals of care, said Sharon Hamill, executive director at the California State University Shiley Institute for Palliative Care. A large challenge for families is that conflicts can exist between patients’ expressed wishes stated in an advance directive and their organ donation elections, Hamill said. Decision makers can experience multi-faceted challenges trying to honor their loved ones’ goals of care, and families need greater support from health care providers, she stated.
“Families making these decisions often have questions that aren’t being addressed by providers or the organ procurement side,” Hamill told Palliative Care News. “Seriously ill people may have elected to be an organ donor while they were still healthy, but changed this as their condition progressed. Their advance directive may clearly state not wanting to be an organ donor, but that has to be in sync with the box they checked on their driver’s license. It’s making sure that documentation aligns and avoiding what can be a traumatic experience for people at the lowest points of life.”
Unpacking the complexities
Insufficient palliative support in organ transplant settings may be leading to disparaging outcomes in some cases, Hamill said.
Palliative care providers can play an important role in providing aid with advance care planning, she stated. Palliative care services often include goals-of-care conversations with patients and their families and assistance connecting them with advance directive resources.
Consistent documentation is among the keys to ensuring goal-concordant, quality experiences when it comes to organ donation and procurement processes, according to Hamill. But educating patients, families and health care providers about the nuances involved can be a challenging feat that results in difficult decision-making, she said.
“Where this becomes an issue is when someone is in distress about how to enact an advance directive in a completely different state from where they obtained their driver’s license and feel like an organ donation organization is being overzealous in procurement,” Hamill said. “It is a real and big gap that complicates a highly stressful, emotional situation. We need to do more to educate people and the medical community about how to make sure these conversations are providing the information needed.”
Health care proxies need greater support to make informed choices about patients’ organ donation decisions, according to a family member who spoke with Hospice News but did not wish to be named.
Decision makers often lack insight on the many variables involved in organ procurement processes, which can complicate experiences surrounding a loved one’s final moments, the family member told Palliative Care News.
“We felt like the organ procurement [organization] was trying to keep our patient alive to harvest their organs when we knew that was not what they wanted on their advance directive. And medical staff at that point became observers and stepped back from care taking,” the source told Palliative Care News.
Advance directive language must clearly state guidelines around anatomical gifts and disposition of remains, the anonymous source stated. But even with this clarification, difficult situations can arise if that documentation preceded the patient’s election to become an organ donor through a state driver’s license program, they said. These two documentation forms need to match up to improve patient and family experiences.
“We learned that the advance directive doesn’t necessarily override an organ election,” the source said. “People need to know how to advocate for their loved one in this horribly scary position to be in. We need to make sure people know what it means when they decide to be an organ donor, that their families have a clear understanding of their wishes and that their medical staff is helping to advocate and honor those goals so that families don’t have to fight for incapacitated and dying people.”
Logistical considerations, rising integrity concerns
Organ procurement organizations (OPOs) are addressing the challenges that families face through varied avenues, said Steve Miller, CEO of the Association of Organ Procurement Organization (AOPO). An important part of improving quality outcomes is ensuring that families understand the logistical considerations involved in their loved ones’ choices, he stated.
OPOs receive clinical triggers from health care providers of organ donors, with different organizations assigned by geographic regions. The triggers are generated as part of the legal requirements stipulated in organ transplantation and procurement regulations and involve notifications around patients’ declining conditions. This system is intended to ensure timely notifications of dying processes that allow for improved organ procurement processes, Miller indicated.
Even with timely referrals, greater coordination among providers and OPOs is needed to improve family experiences, he stated.
“I think in the palliative and hospice care space we see a struggle with timely notification,” Miller told Palliative Care News. “It’s not missing these opportunities to fulfill the final wishes of somebody who may be eligible to be a donor. The testing and evaluation involved can delay that process of a family being able to mourn, and so it’s the sooner OPOs can be engaged in the process and the family can understand that process, the better of communication. Support from the hospital or palliative care team is key to this as well.”
OPOs provide a conduit between palliative and hospice providers and the organ transplant programs, according to Miller. This system was set up intentionally to ensure that no conflict of interest exists, he stated.
Nevertheless, concerns have been raised about how organs are allocated to patients in need of transplantation. The questions have centered around how performance is monitored for the entities responsible for procuring organs, as well as the performance of the contractor administering the organ system.
These were among the concerns raised in an investigation launched last year into the United Network of Organ Sharing (UNOS), the sole contractor and operator of the Organ Procurement and Transplantation Network (OPTN).
In Congress, bipartisan leaders of the House Energy & Commerce Committee pushed the investigation forward, which sought information from the Health Resources and Services Administration (HRSA) regarding issues related to the OPTN’s operation and implementation of organ procurement and transplantation. The issues center on whether the organization had “fair and competitive” practices during organ contracting processes, promoted data transparency and patient safety, and ensured system security and operability.
“Myriad problems” were reported with UNOS’ technology that lack “sufficient technical capabilities,” according to the House Energy & Commerce Committee. UNOS’ core systems were cited as “fragile” and “insufficient” in the committee’s letter to the HRSA.
This came three years after similar concerns were raised around potential fraud, waste and abuse in the industry by the House Committee on Oversight and Government Reform. The committee cited concerns related to “substantial reimbursement” under Medicare coverage that surpassed the “reasonable cost” of allowable services.
Allegations of corruption and fraud in the organ procurement landscape have proliferated at national levels. Probes into possible fraud have been recently reported in The Washington Post. Additional allegations included a Kentucky OPO accused of “pressuring personnel to retrieve organs” from a hospital patient who was awake and was later discharged from the facility alive, The Wall Street Journal reported.
Government entities have been looking into the issue. The Congressional Research Service released a non-partisan report on Feb. 14 about the national system for organ procurement and oversight. In 2023, Congress passed the U.S. Organ Procurement and Transplantation Network Act of 2023. The law authorized the Health Resources and Services Administration to make grants, contracts or cooperative agreements to support the OPTN. It also eliminated a cap on funding for the OPTN and required the Government Accountability Office to review the history of the network’s funding, among other provisions.
The U.S Centers for Medicare & Medicaid Services (CMS) in 2020 revised Conditions for Coverage for OPOs, changing the performance metrics for those entities.
Potentially unethical, concerning and fraudulent organ procurement activity may be disempowering acutely grieving individuals at their most vulnerable moments, Dr. Michael Fratkin, board president of the Institute for Rural Psychedelic Care and palliative care specialist at the Humboldt Center for New Growth told Palliative Care News.
The nation is facing “enormous abuses” in the organ procurement world that have included the mishandling of grieving families by “aggressive tactics” among organ procurement and transplant organizations, Fratkin stated.
OPOs may be leveraging families’ care preferences when they transition a loved one to palliative or hospice care, according to Greg Segal, co-founder and CEO of the patient advocacy and watchdog organization Organize, which aims to transform organ transplantation processes.
“Congressional investigations have shown that OPOs are unsafe and predatory monopolies,” Segal told Palliative Care News in an email. “Whistleblowers have alleged systemic practices of misleading or outright lying to families, or otherwise providing unsafe or unethical care. Hospice and palliative care providers should protect their patients by reporting all instances of OPO fraud or abuse to relevant law enforcement agencies.”
Organ procurement and transplantation organizations are working to address the concerns and provide clarification around these processes.
Common misperceptions surround the selection criteria and assessment processes, according to Jeff Trageser, AOPO’s president elect and executive director at Lifesharing, an OPO based in San Diego, California.
Stronger care collaborations are needed to break down the misunderstandings, Trageser stated. Organ procurement organizations need to work in concert with palliative and hospice care providers to understand goals of care and honor a patient’s wishes, he said.
“We are so heavily regulated, and we file a cost report with the federal government every year,” Trageser told Palliative Care News. “There’s really nowhere to hide in this industry. Every case is reviewed by different agencies with quarterly, monthly, annual reviews and auditing. We’re pretty well-scrutinized. [It’s] reiterated that we’re really here to honor the family’s wishes. We don’t try to change people’s minds. That’s a very important distinction to know.”
