October 19, 2017
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Should the Internet pay for your health care? Maine kidney surgery raises ethical quandary

By Jackie Farwell, BDN Staff
Updated:

Christine Royles wanted to spark a reaction when she painted a plea for a kidney donor on the rear window of her vehicle.

“Looking for someone to donate me their kidney,” the 24-year-old South Portland mother wrote, adding her phone number. “Must have type O blood.”

Her unorthodox approach attracted an altruistic stranger willing to donate but also, as soon as the Internet got involved, the attention of countless other people she had never met.

Some, like Royles’ donors, responded with generosity. An online crowdfunding campaign to cover her expenses raised nearly $50,000, eight times the amount sought. Numerous media outlets from Maine to the United Kingdom picked up the story, setting a match to the low-tech appeal Royles spelled out in yellow paint on the back of her Kia Soul.

But with the outpouring of support and well-wishes came less welcome reactions. Several online commenters told Royles, who was on dialysis because of an autoimmune disorder, she should “wait her turn” for a kidney on the organ transplant list, which assigns donations based on need. Others accused her of using her 2-year-old son to garner sympathy.

More importantly, Maine Medical Center in Portland and the Maine Transplant Program temporarily delayed Royles’ transplant surgery, leery of federal regulations that prohibit individuals from profiting off the donation of an organ.

While health insurance covers the medical bills for transplant surgery, donors can get reimbursed only for their related travel and lodging expenses. The crowdfunding campaign, set up by a friend of the organ donor, far exceeded those costs, forcing the hospital to wade through the unprecedented ethical and legal implications.

Some ethicists argue society should engage in a similar conversation, as more and more people turn to crowdfunding websites such as gofundme.com to pay for their medical bills and related expenses. Medical campaigns in Maine posted on that website alone have raised more than $2.3 million since GoFundMe’s launch in May 2010.

This leaves ethicists and health advocates asking several questions. What does that say about our health care system and sick leave policies? Who is mostly likely to convince donors to click, deemed by the Internet as more “deserving” of medical care than another? And is crowdfunding really any different than a spaghetti supper benefit at the local church?

The perfect patient

On June 16, Royles received a kidney from Joshua Dall-Leighton, 30, a Windham corrections officer who spotted her plea in March. Like other living kidney donors, he can lead a normal life with only one.

Royles never feared MMC would cancel the transplant surgery and was healthy enough to wait out the delay, which also resulted from her low white blood cell count at the time, she said. Dall-Leighton wasn’t so sure, worrying the hospital would pull the plug on the procedure.

MMC hasn’t commented about how it resolved the legal and ethical dilemmas presented by Royles’ case.

Both patients are recovering, and a week after the transplant Royles said she’s much improved, despite a painful drain inserted into the surgical site.

“I don’t feel as tired,” she said. “I used to be cold all the time, I’d wear sweaters all the time. And now I’m sweating. I feel a lot better.”

She also continues to feel the reverberations of sharing her story with the online world.

“I still get text messages saying, ‘I’ll donate to you,’” Royles said.

People turn to crowdfunding websites to fund a variety of causes, from disaster relief to travel to college educations. But campaigns for medical care raise a unique set of issues, according to Jessica Miller, a clinical bioethicist at Eastern Maine Medical Center in Bangor and chair of the philosophy department at the University of Maine.

As MMC’s careful weighing of Royles’ case demonstrated, society has made clear through law that body parts shouldn’t have a price tag. But Miller questions to what extent crowdfunding for medical care more broadly results in a “commodification of patient narrative.”

Whether it’s a campaign for cancer treatment, in-home nursing care or fertility treatments, crowdfunding sites present viewers with a story about the individual in need, packaged with photos and ready for easy sharing on social media. The process rewards computer-literate and tech-savvy storytellers, even as the digital divide grows smaller, Miller said.

But, she asks, what about the sick grandmother or the minimum-wage worker with no computer who can’t make it to the library during regular hours?

Many crowdfunding pages serve as a place for friends and loved ones to contribute and receive updates on the person’s plight, but the campaigns also invite donations from complete strangers. That sets them apart from fundraisers such as the pancake breakfast Royles organized for Dall-Leighton, which raised $1,400 before the GoFundMe effort took off.

“The spaghetti supper draws on community relationships and community identity,” Miller said. “The GoFundMe, the Indigogo, the YouCaring [sites] draw on strangers. It’s almost like you have to fill in your own gaps. In your mind, what is a deserving patient? There’s no context.”

The gaps leave room for morally loaded judgements, an all too easy proposition when it’s someone else’s circumstances we’re weighing, Miller said.

“It rewards the perfect patient,” she said. “The cute child with cancer might be more likely to have their campaign funded than, say, a woman who has a campaign to obtain an abortion.”

That’s certainly true on GoFundMe, which made headlines in September 2014 when it shut down an Illinois woman’s campaign to raise money to terminate a pregnancy. The website went on to ban fundraisers for a number of causes in addition to abortion, including gambling, sexually explicit material and even “sorcery, unexplained sciences or absurd claims.”

The site also prohibits campaigns for “procedures conducted outside of an accredited medical institution.” But many people turn to such websites to fund experimental treatments after doctors or health insurance companies — trained to evaluate the safety, risks and benefits of medical treatment — turn them down, Miller said.

“The person who is donating may not know that this highly expensive treatment has a vanishingly small chance of helping,” she said. “They might have preferred to put their money somewhere else that had a greater likelihood of a positive result.”

While rare, some fraudulent campaigns solicit funds for people with nonexistent illnesses, Miller said. Even legitimate campaigns raise patient privacy concerns. Think of the child whose parents raised money online for in vitro fertilization, with a history online for the world to see as they grow up, she said.

At the same time, loved ones often find solace in donating to such campaigns, feeling as though they’re taking a concrete step to help, Miller said. That support in turn can make the patient feel loved and valued during a difficult and vulnerable time.

“It’s a societal question we should all be asking, but I wouldn’t point to an individual campaign and say, ‘you shouldn’t have done that,’” Miller said. “On that micro level, you do see all the good things.”

Dall-Leighton, who plans to return to work July 1, said he sees no reason limit crowdfunding for medical care. While he was surprised by the response for the campaign benefitting him, he said he’s grateful for the help.

“I think it’s great,” Dall-Leighton said. “Who are we as a society to tell people how to spend their own money? I don’t know any of these people. It’s not like we asked for this giant amount.”

He credits Royles for taking the initiative and devising a creative way to find a donor.

“She was her own advocate,” Dall-Leighton said. “She didn’t wait on a list.”

A last-ditch effort

Emily Brostek, executive director of Consumers for Affordable Health Care, sees the rise in crowdfunding for medical care as a symptom of a bigger ailment.

Before the Affordable Care Act expanded access to health insurance, including to 68,000 people in Maine, Brostek’s Augusta advocacy group received more calls about crowdfunding for medical care, she said. Representatives who answered the organization’s help line advised callers to treat crowdfunding as a last-ditch effort, she said.

Even those with health insurance through work can find themselves overwhelmed by health care expenses or struggling to pay ever-increasing deductibles, Brostek said. Many, as in the case of Royles’ donor, turn to crowdfunding to pay the extra costs that crop up beyond the treatment or procedure itself, such as travel and hotels in Boston or money to pay bills while they’re out of work recovering, she said.

“That’s beyond the scope of what traditional health insurance ever paid for or has any vision of paying for, and then the issue is more what kind of medical leave people have available,” Brostek said.

She worries some people turn to crowdfunding in desperation before exhausting other options, such as calling the hospital to negotiate a reduced bill or applying for Medicaid. Some families, who once earned too much to apply for the government health insurance program or hospital free care suddenly qualify after a medical emergency guts their bank account, Brostek said.

Miller wonders whether crowdfunding, despite all the good intentions, masks injustices in the health care system. In one way, stumbling across a friend or neighbor’s campaign can raise awareness about how unexpected medical costs can devastate a family. But is it prompting a wider conversation about why some expenses aren’t covered or why the typical cancer survivor pays more than $8,000 per year out of pocket?

New research also questions why public policies do little to encourage organ donation. In the U.S., 21 people die each day waiting for an organ transplant on average, yet states’ attempts to incentivize donations from living donors barely make a dent, according to a study published earlier this month in JAMA Internal Medicine. Researchers reviewed policies in all 50 states on organ donation between 1988 and 2010 — such as tax breaks to blunt the costs of donation — finding they had “no observable effect.”

That leaves people such as Royles trying to land a donor any way they can.

One expert argued it’s time to test new incentives for people willing to save a stranger’s life through organ donation, perhaps even contributions to a retirement account.

“Our current transplant system is inadequate for the task of boosting the volume of organs needed for life-saving transplantation,” Dr. Sally Satel of the Yale University School of Medicine psychiatry department wrote in a commentary accompanying the study. “Altruism is not enough.”

Dall-Leighton and his wife used some of the crowdfunded money to buy clothes and other items for the neonatal intensive care unit at MMC, where their twin boys were cared for as babies, he said. They plan to make similar gifts in the future and will use some of the funds to cover ongoing medical costs for one of their boys, now 10 months old, he said.

Once the crowdfunding effort gained steam, the public’s attention quickly turned from Royles’ need for a kidney to the money, Dall-Leighton said.

“All of that went away,” he said. “There was way too much attention put on that. In the long run, if people want to donate, let them donate.”

 


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