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There’s another type of organ donation that goes well beyond life-giving hearts, lungs, kidneys and livers. It involves the recovery of large swaths of human skin; long bones of the legs, arms and scapula; heart valves, tendons and ligaments; and corneas.
Unlike the delicate major organs, which can only be taken from a brain-dead patient whose heart is still beating, the recovery of human tissue and bone can take place up to 24 hours after cardiac death.
This makes virtually all non-cancer patients under age 90 potential donors.But there’s another side to this next level of human gifts.
Coroners and funeral directors say the extraction of skin, bone and ligaments can be highly invasive, leaving the remains both difficult to autopsy and hard to embalm and prepare for funeral rites.
In fact, coroners interviewed by PennLive had a macabre nickname for the aftereffects of bone donation: “Gumby,” after the pliable cartoon character.
“Imagine Mr. Gumby,” Dauphin County Coroner Graham Hetrick said, comparing the cartoon to the body’s state following long bone extraction.But with the potential pool of skin, bone and tissue donors so huge and the medical uses for these human gifts ever growing, other states are mandating their coroners to help increase these donations by notifying organ procurement organizations of every death.
It’s a rule the Pennsylvania Coroners’ Association and its members said they would fiercely resist.“They want to have notification of every case we roll out on? That’s ridiculous,” Hetrick scoffed. “Number one, I don’t want to put a family in that position: ‘We’re giving your phone number to these people, and they’re going to try to get your husband’s tissue.’ I’m not going to get in that circle. That’s not my job.
The need to expand tissue donation sets up another potential front in the ongoing conflict between the elected officials mandated to determine cause and manner of death and the federally certified organ donation organizations whose mission is all about saving and improving lives with gifts from the dead.
The two organ donation organizations operating in Pennsylvania – CORE to the west and Gift of Life covering central and eastern Pennsylvania – said there are no plans to push for a notification requirement for coroners that would be similar to the long-standing notification mandate for hospitals.
However, the state of Delaware, which is part of Gift of Life’s territory, already has a protocol for automatic notification of “on-scene” deaths through its system of medical examiners, said Richard ‘Rick’ Hasz, Gift of Life’s vice president for clinical services. Hasz said he’s since established voluntary coroner notification systems in several large Pennsylvania counties, including Philadelphia and Montgomery.
“Mandating may be difficult,” Hasz said. “But we have many counties doing it voluntarily. It has proved to be pretty successful.”Former Pennsylvania Gov. Robert Casey and his wife Ellen talk following a 1995 check-up at the University of Pittsburgh Medical Center’s Presbyterian Hospital in Pittsburgh.
Twenty-five years ago, Pennsylvania, inspired by Gov. Bob Casey, a heart transplant recipient, vaulted to the forefront of organ donation legislation in America by enacting a law requiring hospitals to notify organ procurement organizations on each death. When the law took effect in 1995, it set the standard for the rest of the nation, an example soon enshrined in federal law.
This game-changer went on to become the single-biggest advancement increasing the availability of life-saving organs, donation officials say.
Since then, however, Pennsylvania has lagged as other states have expanded the notification requirements to include coroners and medical examiners. This expanded notification covers many more deaths that occur outside the hospital – as many as 70 percent more.
While these deaths are ineligible for major organ donation, the expanded notification from medical examiners and coroners has helped increase the recovery of skin, bone, ligaments, heart valves and corneas — all of which can be taken up to 24 hours after death.
Kathleen Diebold Hargrave, a regional medical examiner operations director in Missouri, said her state began mandating coroners and medical examiners provide notifications in all deaths beginning in 2008.“In our state, every family is contacted,” said Hargrave, medical examiner director of operations for St. Charles, Jefferson and Franklin counties. “The bulk of our cases are outside of the hospital, and most of our donations are tissue donations.”Hargrave said her three-county region, covering a mostly metropolitan area, has since placed the notification on a sort of automatic pilot by linking the medical examiner’s data base with one run by the organ procurement organization. The death notification is now seamless in every case, giving the OPO the best chance of recovering skin, bone and other tissue within that 24-hour window.
The result has been a boon in all types of tissue donation, which is recovered prior to any autopsy, she said.“They are taking a lot of different skin — back, leg and arm skin. Also, heart valves, Achilles’ tendons and bone,” Hargrave said.A scene from an autopsy room. (Photo: Dan Gleiter)
The early notification on virtually every death provides many more families the opportunity to decide whether their loved one will donate.
“The family has to authorize what they allow to be harvested,” Hargrave added. “The family really has a voice in what they want to donate.”
If there’s a downside, Hargrave said it’s that elected coroners in more rural areas have been slower to adapt to the new notification requirements. Also, with more death cases becoming tissue donors, there are often delays in death investigations and the post-donation remains are harder to deal with for both coroners and funeral directors. In Missouri, as Pennsylvania, sometimes these two groups are one and the same, she said.
“A lot of them do own funeral homes. They’re lay people,” Hargrave said of Missouri’s elected coroners. “Undoubtedly, it’s more work to process a body who has donated. But they can still have a viewable open casket. It just requires more prep. That’s why they are upset. It costs them more work.”It’s an excuse Hargrave won’t abide in her office.
“Sometimes the cases are more work than the other cases,” she said. “My pathologists have never complained about that. It comes with the job. Our goal is to refer every case we possibly can. It’s about the family — honoring the wishes of the loved one.”In Pennsylvania, however, coroners insist the task of increasing skin, bone and tissue donation just isn’t their job.‘Life-enhancing’The benefits of tissue donation are only increasing, organ donation officials say. So is the need for more human skin, bones, tendons, heart valves and corneas, among other items.
While these human gifts are not classified as “life-saving,” such as with organs, they are considered “life-enhancing.” Advocates insist this doesn’t fully capture the value of tissue donation.
Skin can be grafted for burn victims and used in breast reconstruction surgeries, they say. Bones and medical products derived from them can help regrow one’s own bone after injury, accident or disease. Heart valves can be directly transplanted, along with ligaments and tendons. These treat everything from congenital heart defects to the sports injuries of athletes and weekend warriors.
“The word enhancement, I think is terrible,” said T.J. Roser, coroner and funeral director liaison with CORE. “I think it is a poor choice of terminology.”
The need for tissue donation will only expand as medical technology, innovation and uses for this human resource continue to advance.“There are so many more tissue recipients,” said Hasz, with Gift of Life. “There is now a shortage of skin for those procedures,” he added of burn treatments and breast reconstructions.
But with nearly everyone who dies a potential tissue donor, there shouldn’t be any shortages. This has been proven by the tremendous success of cornea donation, Hasz pointed out. He said the waiting list for corneas has been all but eliminated, resulting in a 99 percent restoration of sight for some 500,000 people.
The major differences between organ and tissue donation don’t end there.
While surgeons recover organs for transplant at hospitals where patients are pronounced brain dead, technicians trained and employed by the organ procurement organizations typically recover the tissue, bone, heart valves, tendons and ligaments. A separate technician often deals with the delicate corneas. And the organizations have their own state-of-the-art facilities to conduct tissue recoveries, many of which can occur before or after autopsy.
Rather than being directly transplanted, the skin, bone, ligaments and values are sent to special processing centers to be prepared for a variety of medical uses, organ donation officials said.
But as tissue donation becomes more widely recognized, there are a growing number of misconceptions that could limit its acceptance and potential growth, some fear.For example, some families may mistakenly believe the OPOs are now routinely recovering tissue for face and hand transplants, Roser noted.
The truth is, these specialized donations require a separate and specified approval from families. So do donations for anything but direct transplants, such as organs for research purposes, donation officials said.
“I get a lot of questions about face transplants and hand transplants,” Roser said. “That and research is a totally different authorization.”
The need to tamp down these and other misconceptions about tissue donation is imperative since so many more people are eligible to donate – but only if they and their families so choose, organ donation officials say.
Thus far, however, the tissue donation numbers in Pennsylvania remain relatively small when compared to the potential pool of donors.In its territory of 11 million people, Gift of Life recorded 1,368 skin and bone donors and 2,009 cornea donors in 2018, according to its audited statistics. This is more than double the 615 organ donors that year – but a tiny fraction of the 40,000 annual hospital deaths that Gift of Life is notified on. And it is an infinitesimal slice of the total number of deaths in the region, given that a full 70 percent of coroner cases occur outside of hospitals.
While Pennsylvania coroners remain opposed to any notification requirements for these non-hospital deaths, those interviewed by PennLive said they support organ donation and will step in to assist those grieving families who want to donate.
“If the family asks us, we will facilitate that,” Montour County Coroner Scott Lynn said.Lycoming County Coroner Charles E. Kiessling Jr. told of a recent tragic case and how the organ donation designation on a teen victim’s driver’s license helped a family heal.
“We just had a 19-year-old slam her car into a tree,” he recounted. “She’s an organ donor. I see it on her driver’s license. So when we went to notify the family, we did say, ‘Hey, your daughter was an organ donor. Is this something you would want us to follow through with?’”The family did.“A lot of the families are very appreciative of that,” Kiessling said. “It gives them some comfort in knowing that they’ve been able to donate and help other people, even though it is their loss.”Curiously, however, while coroners are generally supportive of organ donation, several of those interviewed by PennLive said they’ve opted not to be donors on their driver’s licenses.
Hetrick said he received a curious reaction from a PennDOT clerk when he turned down the organ donor designation while recently renewing his driver’s license.“The woman looked at me like I’m a bad person,” he said. “I want my wife to make that decision.
”Or perhaps it’s because the coroners realize the realities of tissue donation, the after-effects of which can shock even those accustomed to death in all its forms. Nightmare’When a person’s long bones are donated, they are replaced with PVC pipe, coroners and funeral directors interviewed for this story said.
Because the muscles are no longer attached, the limbs are like rubber. Hence the macabre nickname, “Gumby.”What’s more, major arteries and veins are often severed in the bone extraction process, they said. This is the body’s plumbing, and now it’s broken.
As a result, embalming the body – a practice that normally takes place by pumping fluid into the main artery of the neck and out through the jugular vein — now must be done piecemeal at various sites throughout the body.“In a long bone donation, you interfere with all the vasculature,” said Hetrick, who in addition to being coroner, grew up in the funeral business. “They (OPO technicians who conduct tissue recoveries) are not worried whether they cut through an artery.”
“Every artery and vein are wrapped around the bones,” added Butler County Coroner William F. Young III, who also works in his family’s four-generation funeral business.
“There is no arterial system, so you inject with a hypo needle,” Young added. “You still embalm that body to the best of your ability.”Skin donation presents still other difficulties, they said.
A body missing large swaths of skin can slide off a stainless-steel embalming table as if it were a greased pan, Young said.“You really have a hard time with a heavy person with a lot of fat cells,” he said. “It is like a bunch of soap or oil underneath.”And then there’s what funeral directors and coroners call “leakage.”
With so much skin missing and so many arteries and veins severed, there’s no amount of suturing and special embalming powders that can contain all the fluid inside the bodies, coroners and funeral directors said.As a result, the deceased who undergo tissue donation are placed into full plastic body suits prior to being dressed for viewing, they said.“It’s an embalmer’s nightmare,” Young said of the after-effects of skin, bone and tissue donation. “If families really knew, they wouldn’t do it.”
The official position of the Pennsylvania Funeral Directors’ Association is its members are adequately trained to successfully deal with the after-effects of all types of organ and tissue donation. Moreover, funeral directors are barred from influencing a family’s decision on donation.Still, David Peake, the Pennsylvania funeral directors’ president and a funeral homeowner in Philadelphia, didn’t minimize his members’ complaints about organ donation.“You got to look at it logically and realistically. If you’re conducting a major post-mortem surgery — harvesting would be considered a major post-mortem surgery — you know you are going to be disconnecting (blood) vessels used in the embalming process,” he said.“Are there people who have issues with it? Sure,” Peake continued. “As a licensed funeral director, you have been trained in all and every embalming technique to circumvent this issue.”
The bottom line for Peake and the funeral directors’ association comes down to the irrefutable greater good of organ and tissue donation.“Can you honestly argue with what they are doing?” Peake said. “Someone is going to benefit from that. So you’ve got to look at it two ways: Is there an interruption to what we need to do? Yes. But it is just another step in the process.”Organ donation representatives not only recognize these issues – they said they are increasingly responding to the needs of both coroners and funeral directors.Roser, who is both a working deputy coroner and a trained funeral director, said his role as CORE’s liaison to these groups involves actively improving relationships through constant communication, valued feedback and concrete responses.When possible, Roser said CORE conducts skin, bone and tissue donations after the coroner’s forensic exam and sometimes, even after the autopsy.
CORE also works with funeral directors, often transporting the remains of tissue donors to the funeral home and conducting quality control surveys to make sure the CORE technicians who conduct skin, bone and tissue recoveries are doing their best to be as minimally invasive as possible.
Upon completion and return of each survey, CORE provides funeral directors with stipends of several hundred dollars to help cover the extra time, work and materials needed to embalm tissue donors.“You can have an open-casket funeral,” Roser said. “Is it a little more work and a little more time? Absolutely. We are aware of that. We compensate them for the extra time.”Roser stated that none of the extra costs associated with organ and tissue donation are ever passed on to the families of donors.However, the OPOs in Pennsylvania stopped short of offering to pay for the funerals of organ donors. When the idea was floated during the last legislative battle over organ donation, the proposal was quickly dropped.
“We would love to help the families as much as we can,” Roser said. “But we don’t want a family to say the only reason we donated was to pay for the funeral. We don’t ever want to make that decision a financial decision.”Instead, the choice should be a meaningful end of life decision, along with all the other details of the funeral and memorial service, Roser said.Still, some coroners openly questioned what happens to all the money generated by Pennsylvanians’ generous gifts of organs and tissue.
“We always wonder as much money as CORE picks up, why aren’t they helping with the funerals?” asked Blair County Coroner Patricia Ross. “And why aren’t they helping our association with better equipment to make better databasing?”Giving HeartsWhen it comes to organ and tissue donation, it turns out that one can depend on the kindness of Pennsylvanians. In fact, the generosity of Keystone State residents has helped make Gift of Life the U.S. leader in saving lives.Gift of Life has been the nation’s No. 1 organ procurement organization for 11 consecutive years. It coordinates more life-saving organs for transplant than any of the other 57 federally designated and regulated OPOs across the nation.Gift of Life’s annual donation rate of 55 organ donors-per-million-population, and its annual transplant rate of 149 transplants-per-million population, both rank among the highest in the world, the organization said.Achieving this requires a staff of 250 and an annual operating budget of $73 million, according to Hasz.The budget covers staff salaries; all hospital charges related to donation, including donor testing and infectious disease testing; transportation costs, including ambulance, helicopter and airplanes; a 24-7 call, communications and coordination center; and ongoing community outreach and education programs, among other expenses.
To fund it, Gift of Life, along with the other federally regulated OPOs, employs a cost-recovery model that assigns monetary value to organs and tissue based on the average costs used to coordinate, recover, transport and process them, Hasz said.The lives of three children, including Noah Lamey, left, and Keith Wagner right, were saved by the decision of Marketa Lewis to donate the organs of her son, 10-year-old Marquis Wood. Marquis died after suffering an asthma attack and cardiac arrest. Mark Pynes | mpynes@pennlive.comIt’s roughly the same revenue model used by blood banks, he said.Different types of organs and differing classes of tissue are all assigned their own dollar value based upon the average costs of procuring them. Hearts cost more than kidneys, for example, because hearts often require a battery of expensive tests – and the physicians to read the results — in order to determine viability, while kidneys need little more than lab tests.The assigned cost of the organs and tissue are passed on as part of the overall medical bill for the transplant or other medical procedure.
Gift of Life is reimbursed only when the organ is successfully transplanted. And all of the organization’s costs, charges and fees are reviewed and audited by Centers of Medicare and Medicaid Services, Hasz said.But when asked for some actual examples of the costs Gift of Life assigns to various organs and tissue, a spokeswoman didn’t respond to PennLive’s written follow-up query.
Organ donation organizations say they put a price on organs and tissue because they have to. Yet it remains a crime, both federally and in Pennsylvania, to buy and sell organs and human tissue. Pennsylvania laws governing organ and tissue donation state that these human gifts can be harvested only for transplant — never for profit.
They remain, as ever, gifts.Indeed, they are among the greatest gifts, freely given, at one of the worst moments in life.Despite the sometimes-competing agendas, even conflicts, among the three stakeholders in death – coroners, funeral directors and organ donation representatives – all say they recognize this.At the heart of it all, is a gracious human impulse, seemingly simple, yet so very profound.“Most families just want to help somebody,” Hasz said.So they give amid their deepest loss.
NOTE: John Luciew is an award-winning reporter for PennLive who spent several months going behind the scenes of organ donation in Pennsylvania. Read his entire Special Report entitled, ‘Human Harvest.’ What should matter more: Investigating the cause and manner of death, which could catch a killer? Or saving lives through organ donation? These are the life-and-death conflicts playing out across Pennsylvania.
