Donors who planned to leave their remains to the Mütter are left in limbo amid museum changes

Barbara Kotzin feels right at home in the Mütter Museum. Over decades, the 74-year-old speech therapist formed a bond so deep with the institution that she planned for it to be her final resting place — as a skeleton on display.

Kotzin lives with scoliosis, and in 1996 she underwent spinal fusion surgery to repair a 60-degree curve. Once the spine was repaired with hooks and rods, she realized that her experience could be educational and made an appointment with former Mütter director, the late Gretchen Worden.

“I didn’t really have to do much convincing,” said Kotzin, who lives in East Cheltenham. “The Mütter has many unrepaired scoliosis torsos, but none with the implantation of the rods and the correction, so we were excited about that.”

Kotzin arranged everything: She got a quote from Oklahoma-based Skulls Unlimited, a company that cleans bones and skeletons using beetles instead of chemicals, ensured her doctor was informed and willing to send her body to the museum, and wrote up a will stating that her estate will cover all costs of the donation, upward of $20,000. She even brought her executor along to visit the Mütter’s scoliosis skeletons.

But earlier this year, Kotzin began hearing about the Mütter’s new leadership and its change in direction. When she reached out to the museum to make sure her donation was still on track, her calls went unanswered for weeks.

Finally, Kotzin heard from museum director Kate Quinn. Quinn told Kotzin that because there was no existing paperwork for her donation, her case would be considered a new acquisition — and the museum is not currently receiving new acquisitions.

“All of the agreements were made verbally,” said Kotzin, who was in contact with the Mütter as recently as 2020 regarding the display of her skeleton. “I was never asked to sign, nor was I presented with anything to sign, nor was it ever a discussion. Everyone was aware that I had made this very explicit in my will.”

Kotzin’s donation is now in limbo, along with those of other past and prospective living donors. They say the museum’s changing direction has imperiled their planned donations or altered how their already-donated organs are being used, contrary to what they had been promised — and they fear their experiences signal a more fundamental shift at the Mütter.

These changes come as the Mütter is in the middle of a comprehensive review of its approach to displaying human remains that is already transforming the institution, renowned for its anatomical specimens. That process, which started this year under new leadership, includes the recently launched initiative “Postmortem: Mütter Museum,” which invites public feedback on the human remains collection, much of it dating to the 18th and 19th centuries. It’s part of a greater effort by museums worldwide to confront unethical acquisition practices that overlooked or ignored individuals’ consent to be examined or displayed publicly.

The crafting of the policy is also affecting living donors, people who have, while alive, donated parts of their body to the museum for display or made arrangements for their remains to be donated upon their death.

Discussions about human remains in the museum community have largely focused on remains of anonymous people from the distant past, the majority of whom did not give their consent.

But living donors often feel a real emotional connection to the museum, and sense of purpose. One living donor, Carol Orzel, was so moved after a visit to the Mütter, where she saw a skeleton with her disease, FOP, a rare condition that turns tissue into bone, that she bequeathed her skeleton in the 1980s. She has since become famous at the museum, where she’s referred to as a resident. Her one request — that her jewelry accompany the display.

Now those types of donations are on hold, perhaps indefinitely.

“We’re temporarily suspending these types of gifts until such time as we can adopt a formal policy to ensure transparency and consistency going forward,” said Quinn.

While standard acquisition paperwork has been in place, such as signed deeds of gift documents, donations were often discussed informally and through verbal agreements.

The College of Physicians, the Mütter’s parent organization, has an overall collections management policy which does address donations as well as human specimens, but Quinn says the museum needs a “dedicated comprehensive policy on human remains, including images and videos of human remains” to meet evolving museum standards around the sensitive specimens. “It is not enough to have a single collections policy that effectively treats all objects acquired by or owned by the museum the same way,” she said.

As the Mütter develops its new human remains policy, there’s no guarantee that it will continue to accept gifts from people who want to donate in the future, said Quinn.

“Acceptance and terms of acceptance will depend largely on the adoption of the human remains policy,” she said.

Ezra Eisenstein, a 33-year-old West Philly artist studying public health policy, also planned a donation, only to have it later rejected. A trans man who was born intersex, he had a severe case of cervical endometriosis that inflicted debilitating pain for years. After a doctor indicated that his underdeveloped uterus, which he jokingly calls an “almost-erus,” would need to be removed, he approached the Mütter about making a donation. Eisenstein remembers Anna Dhody, the curator, wanting to expand the collection’s section on reproductive systems, so her answer was “an emphatic ‘Oh hell yeah.’” Dhody, who is still curator, confirmed the conversation.

That was about 10 years ago. Like Kotzin, Eisenstein was a regular visitor to the museum and maintained contact. When his surgery was scheduled for the fall of 2022, Eisenstein tried to make formal arrangements but was turned away. The woman he reached on the phone, who did not identify herself, told him the museum was not interested and that it was no longer accepting donations. The interaction felt distinctly different from the enthusiasm he had received before.

“It had the tone of ‘This is nasty. Why are you talking to me about it? What is wrong with you?’” said Eisenstein. Quinn said neither she nor the collections manager was aware of any records about Eisenstein’s planned donation.

Even those who have already donated are now finding their gift is not being used the way they had hoped.

Rachel Lance, 39, a biomedical engineer and science writer, donated her exceptionally large uterine fibroid to the Mütter one year ago.

“As a disabled person, a lot of times, I feel like a zoo animal who’s put on display by the medical community,” said Lance, who lives with Ehlers Danlos Syndrome, a genetic condition that affects her joints. “I’m used as a learning opportunity very often. Sometimes that’s done with grace and my permission. Other times, the physicians do whatever the hell they want, and I’m no longer treated like a person.”

At the Mütter, she felt respected. The museum staff she made the arrangements with seemed enthusiastic about her donation, she said, and they even went for her idea of naming the tumor Helga the Destroyer. The Mütter staff promised her she would be actively involved in how the exhibit developed.

But after making her donation in October 2022, things began to take a different turn.

Lance said months went by and she didn’t hear back from the Mütter staff about the tumor she had signed over to the museum, and how and when it would be displayed. When she finally reached a member of staff who had been previously helpful, he said all he could say was that her fibroid was “safe,” according to Lance.

Last month, a frustrated Lance traveled from North Carolina, where she lives and works, to the Mütter town hall meeting to seek answers.

In an appointment with Quinn, Lance said the tone of that exchange was the opposite of the caring conversations she’d had previously with other Mütter staff about her donation. She was told about the museum’s review of human remains policy, which would take at least a year. Because her donation was an “unrestricted” gift, Quinn said the museum wasn’t obligated to display it, although that might happen in the future. Lance was told they weren’t planning to destroy her donation, but they could do what they want with it. Or, if Lance wanted it back, Quinn said she would be open to discussing that, too.

Lance said she believes this is not about ethics, but about museum leaders pursuing a new agenda to transform the museum. “They’re using social awakening about consent and ethics as an excuse to push their agenda about should we have human remains at all,” Lance said. “That’s why I think my case and the other living donors prove what they’re doing is a pretense and not actually what they care about.”

Quinn said that “I understand that our responses to these individuals may be frustrating for them to hear, and we have no wish to create any additional concern for them. But until such time as we can implement a formal policy on human remains — one that almost certainly will include input from the public engagement process currently underway — the museum simply cannot provide definitive answers about whether or how these gifts will be displayed.”

Robert Pendarvis, 62, another living donor, had been happy with how his donation had been integrated into the museum’s collection until the review process removed a key element of his gift.

Pendarvis gave his enlarged heart to the Mütter in 2020, after receiving a transplant to address his rare condition of acromegaly. His heart is still on display, but the videos surrounding his donation, including an interview and an unboxing of the heart, were taken down in January as part of the museum’s YouTube channel review. Hundreds of videos and online exhibits that displayed human remains were removed. Since then, only a quarter of the 450 videos have been returned.

When he wrote to Quinn expressing his displeasure in February, she told him that the removal was temporary and many videos would return. The museum concluded its video review around Labor Day, but the videos about Pendarvis’ condition have not gone back up.

“It’s frustrating because I want to be able to tell people about my story,” he said. He added that he often shared the educational videos about his condition with his doctors and nurses to explain his medical condition, and to spread awareness about acromegaly.

Marianne Hamel, a forensic pathologist and fellow of the College of Physicians, who chairs its Wood Institute, Library and Museum Committee, points out that the current treatment of these donors contradicts the expressed motives for the review.

“If the current focus of the museum is ethical collection by informed donors, then why turn away Ms. Kotzin, a longtime associate of the museum who has not only given explicit consent but also gone to the trouble to pay for the transport and processing of her body before display?” Hamel told The Inquirer in an email.

“It strongly suggests that the current leadership of the College actually cares little about the dignity of the specimens in their care and that their agenda is actually driven by their own discomfort with and disdain for the museum.”

Kotzin said she cannot wait a year until the museum decides if it can still accept her skeleton and she’s now needing to consider alternative arrangements. Had she not reached out, she might never have known that her plans may be in jeopardy, and her executor may have faced an enormous challenge trying to determine her final wishes.

While she’s hurt by the possibility that her legacy will no longer live on at the Mütter, Kotzin still harbors hope that her skeleton may still be able to educate people at some other institution. She also wonders whether she would still want to be at the Mütter under the current administration.

“If the museum is really changing its vision and mission, maybe that’s not the best fit for me,” she said. “This is concerning, not just for me, but for the future of the museum.”