This article was updated on September 2, 2025.

Hawai‘i isn’t often at the forefront of national policymaking, but its 2018 ban on a widely used but controversial pesticide set the stage for other states, the federal government and even the European Union to follow suit.  

With much fanfare, then-Gov. David Ige signed the bill into law in June of that year after a heated public debate in Kaua‘i. Residents there had raised alarms about seed companies spraying the pesticide chlorpyrifos on fields near schools. 

Now, a soft-spoken Kaua‘i pediatrician who helped focus state lawmakers’ attention on the health risks of chlorpyrifos back then is again sounding the alarm. 

This time, the showdown is over a seemingly innocuous 71-word section of the appropriations bill that the U.S. House of Representatives will take up this month following their summer break.  

“It’s a sleeper poison-pill,” says Dr. Lee Evslin, describing the provision that opponents argue could prevent Hawai‘i and other states from again setting their own pesticides restrictions.  

“Hawai‘i’s children and families live closer to pesticide spray zones than most Americans,” Evslin wrote in an appeal to the state’s congressional delegation. He urged them to scrutinize the measure, warning that it “would lock in outdated federal determinations, preventing timely updates that could save lives and protect vulnerable populations.” 

Opponents of the provision say it would also shield chemical companies from lawsuits by people harmed by pesticide use and would limit research that might document hazards posed by chemicals already on the U.S. Environmental Protection Agency’s approved list, such as glyphosate, the prime ingredient in Roundup and other herbicides. 

“It’s so much under the radar,” Evslin says of the section of the bill, which has been overshadowed in Washington by higher-profile debates involving tariffs, tax cuts, immigration enforcement and Jeffrey Epstein files.  

“Tilting at Windmills” 

With lawmakers returning to Washington, one of the first orders of business will be to debate and vote on the appropriations bill. From his island outpost in one of the western-most reaches of the country, Evslin is hoping his single voice can add to a roar that is heard in Washington. 

He has sent letters to Hawai‘i’s congressional delegation, written articles and talked with those in his profession, hoping to convince anyone who will listen. 

“It’s huge, how [the health risks] can be so well documented, and there’s so little publicity out there,” he says.  

U.S. Representative Jill Tokuda, who represents the Neighbor Islands and much of rural and suburban O‘ahu, strongly opposed the measure. “This provision is a blatant giveaway to powerful pesticide manufacturers, shielding them from accountability while leaving families, farmers, and workers to bear the harmful consequences of toxic exposure,” says Tokuda, a Democrat, ahead of the vote. 

But the math is against Democrats in the House, where Republicans outnumber them.  

Evslin, who seems more at ease combing through academic journals or giving measured medical advice to a patient, muses at how he keeps getting pulled into the political arena despite his natural tendency to shy away from the limelight. 

“To some degree I feel like Don Quixote, tilting at windmills,” Evslin says with a chuckle. “There’s a part of me that’s unbelievably passionate about it, and there’s a part of me that looks at myself from a distance.  

“It’s a battle that I think is vital, and I understand that it’s daunting, and I tell myself, just do your best, take one step forward at a time.” 

Evslin’s work to raise public awareness caps a career that included roles as CEO of Kaua‘i Medical Clinic and later Wilcox Hospital, Senior VP at Hawai‘i Pacific Health as well as private practices as a general pediatrician and sports medicine/wellness clinic physician.  

He has drafted testimony for the American Academy of Pediatrics, has written columns for local newspapers and was a keynote speaker at the 2022 U.N. General Assembly Science Summit. 

Evslin says he tried to pull away from medicine during a stint as a small-scale farmer on the Garden Isle after he retired, but science kept pulling him back. He says he was drawn to an increasing number of studies that showed medical hazards from chronic exposure to chemicals that are used in Hawai‘i at much-higher levels than on the mainland. 

That’s when he bumped into less familiar territory of politics, where even the immutable laws of science are often treated merely as cards that can be traded in fungible transactions for personal, professional or partisan gain. 

“At times I say to myself, ‘Am I nuts? I’m happily retired and have nine grandchildren. Why am I even doing this?’ But it feels so right to me, and I’ve become moderately knowledgeable. I feel that I should speak out.” 

Evslin says he was at first a reluctant traveler in the campaign to ban or restrict certain uses of pesticides. He didn’t focus on pesticides – a catch-all category that also includes herbicides, insecticides and fungicides – until reading two papers in 2012 by the American Academy of Pediatrics, which reported on the health threats of chronic low-level exposure to pesticides. 

“I’ve always been interested in why some people are healthy and some are not,” Evslin explains. “That’s been a thread of my career and looking at what you can do about it.” 

“So, when these papers came out, that was a game-changer to a certain degree to pediatric thinking.” Up to that point, he says, pediatricians were taught to treat acute poisoning – accidental spray exposure or consuming a pesticide.  

“If someone called me and said they took something, the first thing I would do is call the poison control center because they had the data at their fingertips” and could most quickly treat the immediate symptoms. 

He adds: “The idea of chronic, low-level exposure to pesticides being dangerous just hadn’t been something I or most pediatricians thought about.” 

That was about to change. 

Three Growing Seasons a Year 

Hawai‘i has played a critical role in the development of crop seeds that are sold by major companies around the world and become, literally, the source of much of the food consumed on the planet. That’s because those multinational seed companies – through complicated genetic engineering and hybrid techniques – need to test their creations before receiving regulatory approval. Currently, that means they need to show the seeds have performed through three growing seasons.  

Because of its geographic location and benevolent climate, Hawai‘i is one of the few places in the United States that offers seed growers such favorable conditions. Companies such as Syngenta, Dow AgroSciences, DuPont Pioneer and BASF Plant Science were drawn to the ideal farmland on Kaua‘i to develop new seed strains, while Monsanto, now owned by Bayer, concentrates its farming operations on other islands. 

In 2012, the companies operating in Kaua‘i “were reportedly spraying or applying 18 tons of restricted use pesticides in a relatively small footprint,” says Evslin. “It became a huge issue with activists on Kaua‘i.” 

Evslin says the seed companies explained they had to use large amounts of pesticide because insects in the tropics were worse than on the mainland.  

“So, if you compare our usage of chlorpyrifos, which is a very toxic insecticide, with the usage on the mainland, we ended up using about three times” mainland amounts, he says. 

Shortly after Evslin had shifted his focus to chronic, low-level pesticide exposure, members of the Kaua‘i County Council introduced legislation to limit the use of chemicals in the fertile fields of the island’s west side. 

“I wrote testimony for the hearing,” Evslin says. “At that point in my career, I was in my practice on Kaua‘i, which had a lot to do with wellness, so it was in my alley.” 

About 15 other physicians and medical practitioners on the island signed the testimony he read to the hearing, which was packed with hundreds of people representing both sides.  

Not comfortable in front of big crowds, much less emotionally charged ones like this, Evslin remained clinical, explaining that from a scientific perspective, it was important to think about the health risks from long-term, low-level exposure to the chemicals that were being sprayed in the community’s fields. 

“All they were asking for was that they wanted no-spray zones around schools, they wanted stronger right-to-know language so that people would be informed about what was being sprayed where,” Evslin recalls.  

Long story short: The council approved restrictions, the seed companies won a legal appeal that said only the state could impose such limits, and the state Legislature later followed up with its own law imposing a phased-in ban on chlorpyrifos on state agricultural lands. 

Other states followed suit. Federal government attempts to bar the use of the pesticide followed a similar on-again, off-again pattern as the issue – and control of the EPA –bounced between shifting political camps and agendas. 

Today, long after the U.S. Court of Appeals for the Eighth Circuit vacated the EPA’s effective ban on chlorpyrifos, use of the pesticide still faces restrictions but is not banned at the federal level.  

New Evidence of Harm Emerges 

Coincidentally, a study published this month in the journal JAMA Neurology links prenatal exposure to the insecticide with enduring widespread molecular, cellular and metabolic effects in the brain.  

Researchers for the study, from Columbia University’s Mailman School of Public Health, Children’s Hospital in Los Angeles, and the Keck School of Medicine at USC, also linked the chemical exposure to poorer fine-motor control among youth. 

“A study like this is a powerful argument for the ban that Hawai‘i enacted in 2018,” says Evslin, who had served on a state-county joint fact-finding task force on this issue, and it provides evidence about “the danger of the federal government saying that even a blockbuster study like this could not even be analyzed [under the pending legislation] until the next formal review of the chemical,” a process that occurs about once every 15 years. 

That’s why he says Section 453 in the appropriations bill is so potentially dangerous.  

“What they’re saying is that if new data comes along, they can’t spend money reviewing it to see if they should modify” existing rules, Evslin says. “So theoretically what that would mean is only every 15 years could you do research and point out issues and make a difference about the danger of one of these chemicals.” 

Section 453 as Political Strategy 

Environmental and other non-governmental organizations advocating for restrictions on certain pesticide uses have ramped up efforts to block section 453, which opponents say plays into the strategy of chemical companies. 

After losing heavily in recent court cases, companies like Bayer/Monsanto have sought relief from state legislatures and courts, with limited success, according to Jay Feldman, executive director of one such group, Beyond Pesticides. Next, they turned to Congress. 

“They do it in a very circuitous route,” he said. “They do it through an appropriations bill, where they basically say to EPA, ‘you can’t change the label [on pesticides] unless you do an extensive health assessment,” which can take over a decade. “So, they’re not directly saying you can’t sue manufacturers, they’re saying the EPA cannot allow a change in a label without these tremendous hurdles that are very time-consuming. 

“The manufacturer then goes to the court, and says ‘Judge, we couldn’t change this label [to provide better warnings to consumers], because this is the label EPA gave us and Congress has precluded the change in label, so we can’t be held responsible for failure to warn.” 

The sort of Catch-22 routine blocks the last avenue for litigants seeking relief for damages, he said. The irony, Feldman adds, is that the pesticide companies are the ones who helped write the language in the bills. “Whether that would even hold up in court, it remains to be seen, but it’s been done before,” he said. 

In a statement, Bayer responded: “We agree that no company should have blanket immunity and, to be clear, the language in section 453 of the appropriations bill for the Department of the Interior would not prevent anyone from suing pesticide manufacturers. Anything to assert otherwise is a distortion of reality.

“As part of our multi-pronged approach, we support federal legislation alongside more than 360 agricultural organizations because the future of American farming depends on reliable science-based regulation of important crop protection products – determined safe for use by the EPA. Other measures include the support of legislation at the state level and a Supreme Court petition.

 “Legislation at a federal level is needed to ensure that states and courts do not take a position or action regarding product labels at odds with congressional intent, federal law and established scientific research and federal authority….”

In court filings, Bayer unit Monsanto has argued that because the EPA has approved glyphosate-based product labels without cancer warnings, plaintiffs cannot sue under state laws for failure to include such warnings.

Even so, with the application of Roundup on farm fields around the country, lawsuits alleging health damage from exposure to the chemical also began piling up. After initially winning some of the lawsuits by claiming research showed the chemical was safe, Bayer started losing, big-time, and the losses and legal costs piled up.

As of August 2025, Bayer had settled about 100,000 Roundup lawsuits for about $11 billion, but another 61,000 cases remain active.

In a statement on glyphosate, Bayer said it “stands behind the safety of our glyphosate-based products which have been tested extensively, approved by regulators and used around the globe for 50 years. The EPA has an extremely rigorous review process which spans multiple years, considers thousands of studies and involves many independent risk assessment experts at the EPA.”

Political Twilight Zone 

After the Kaua‘i hearings, the fact-finding recommendations and the County Council vote to restrict pesticide use around schools, Evslin says, he was stung by the seed industry representatives’ comments that he was “fear-mongering” and “unscientific” – the antithesis of his self-image. 

“And that’s when I was struck by this kind of Twilight Zone. It was as if they weren’t looking at the same scientific information at all.” 

A representative of the Hawaii Crop Improvement Association, which represents the seed companies, did not respond to Evslin’s assertion but in a statement said it supports the House measure.

The section, it said, will “help ensure that our hard-working agricultural producers across the country can rely on consistent agricultural labeling based on well-established and thorough scientific protocols.” 

Peter Adler, a conflict resolution consultant and chair of the joint task force charged with finding common ground among the feuding sides, recalls the role played by Evslin. 

“He did a lot of careful rounding up of studies,” Adler says of the task force debates. “It wasn’t just an opinion jamboree. It was much more based on trying to understand what the data was [concerning] the use of some of these pesticides.” 

Adler says the task force sought to sort out which claims were real and which ones were exaggerated or imagined, what could be confirmed, and what couldn’t. 

Evslin “was really good about pulling in a lot of data and groups of studies,” he says. “It was bringing evidence to the table. We’re not in a court of law, but we’re trying to work out [a solution in] a highly charged political environment. He was very fact-centered.” 

Evslin’s concerns intensified when he later started digging into the scientific studies on glyphosate, the active pesticide ingredient in Roundup and many other herbicides. 

“It was so obvious that the scientific literature had so much data about how dangerous it was, and all you hear from these industry places was, ‘no, it’s safe, it’s one of the best studied ones in the country, no regulatory agency has banned it, and on and on,” Evslin says. 

“I began to babble about it to my wife, and she said, ‘stop talking about it and write a book’.” 

So, he did, published in July 2021: “Breakfast at Monsanto’s: Is Roundup in Our Food Making Us Fatter, Sicker, and Sadder?”  

While conducting research for his book, Evslin said, he came across what he said was convincing scientific evidence that glyphosate was pervasive in our food supply and was causing damaging health effects. 

Glyphosate-Based Herbicides Changed Seed Science 

If chlorpyrifos proved a moral victory for Hawai‘i advocates hoping to limit chemical exposure that can cause developmental delay in children, the presence of glyphosate in food posed a greater challenge.  

In plant and crop genetics, one of the most profound changes in agriculture has been to genetically alter seeds so they become resistant to toxic chemicals in glyphosates. That is the primary ingredient used in Roundup, which is produced by Monsanto and has become the world’s most heavily used herbicide in history.  

By using seeds that are resistant to glyphosate, farmers can spray their fields with the pesticide, killing everything but the intended crops, and saving millions of dollars on weed control.  

After that discovery, use of Roundup and related glyphosate-based pesticides spread like, well, weeds.  

“We in the United States use 30-40% of the glyphosate in the world, and we have much less restrictive guidelines” on it, Evslin says. So, everything from soybeans to corn to canola to wheat – many of the ingredients used in our highly processed foods – are often sprayed with glyphosate herbicides and leave traces in the resulting food products that we consume.  

Tests, meanwhile, have shown that 80-90% of Americans have glyphosate in their bodies, which dissipates over time but can also be replenished if a steady diet of food and water contain the chemical. And pesticide opponents say they do. 

After examining hundreds of scientific studies on glyphosate and glyphosate formulas, Evslin says it became clear to him that there was powerful evidence suggesting links to cancer and other detrimental health effects.  

Glyphosate’s Role as an Antibiotic 

Amid piles of studies, Evslin thinks he’s found the regulatory Achilles heel for glyphosate. 

“It’s definitely an antibiotic,” Evslin says, “And it affects the microbiome – the bacterial content of our intestines and our skin and our respiratory tract. The vital role that it’s playing is only beginning to be fully understood. 

“We have more bacteria cells in us than we have human cells. They are an unbelievably integral part of everything – how we think, how our immune system works, how we digest foods.” 

Studies, he says, are showing links to obesity, inflammation, DNA changes and liver disease, among other disorders. 

But regulatory agencies don’t consider chemicals’ effects on the microbiome, he says.  

“What I’ve been trying to do with that is say, yes, I understand,” he says. “But we do regulate antibiotics in food and it’s an antibiotic, and we need to accept that fact. It seems to me it’s an Achilles heel, because it is an antibiotic, we regulate antibiotics, and that should be a short way to get it out of our food.” 

Prospects for Section 453 

What are the chances that Section 453 of the appropriations bill will be approved? 

Rather likely, it turns out. Few Republicans have gone against the party line in any recent votes. 

Hawai‘i congress member Tokuda stood firm in a statement ahead of the vote: “Hiding dangerous information on pesticides endangers everyone but especially workers, pregnant women, keiki, and vulnerable communities. It is another win for corporate interests and their priorities and yet another reckless, shameful, and immoral effort by Republicans. No corporation should be above the law, especially when lives are at risk.” 

The state’s other representative, Ed Case, also opposed the bill. In a letter to Evslin, he wrote that section 453 and other parts of the bill “prohibit the Environmental Protection Agency from enforcing environmental and public health regulations related to clean water, clean air and hazardous waste and pesticide laws.”  

He said he also opposed a 23% cut to the EPA’s budget, “which severely impacts its capabilities to protect human health and the environment.” 

Says Evslin: “In terms of what will happen with the bill, my guess is that the House will pass it, and there may be more of a fight in the Senate if it crosses over. The provision is so buried, though, that I don’t think it will get defeated unless there is a dramatic increase in public awareness.” 

Either way, after the vote, Evslin will glance out at the tropical land where he once considered gardening, and then he’ll turn his attention back to the latest medical studies examining health effects from long-term exposure to pesticides.   

At about 3:30 p.m. on April 23, 2024, I was rolled into an operating room at The Queen’s Medical Center to have major abdominal surgery. There was nothing wrong that required medical attention – I celebrated my 25th birthday earlier that month and had a clean bill of health. No, I was in the hospital by choice, and though my family was anxious, I was eager for this procedure called a nephrectomy.

When I awoke from the four-hour operation, I was super groggy and in moderate pain but, without a doubt, happy: After a year of paperwork, medical tests and psychological evaluations, I was finally able to donate my spare kidney to someone who desperately needed it.

My “Why” 

It may sound strange, but I never had any doubts about my decision to donate a kidney to a stranger. During a philosophy class about altruism in my senior year of high school, I learned about living organ donations and was immediately captivated by the idea.

I already knew you could donate your viable organs after you die, and that a single word added to your driver’s license – “donor” – would make that happen. But I learned in that class that kidneys are among the few organs you can donate while alive. That’s because we have two but only need one, and the kidney you keep will gradually grow in size and strength.

In a less common procedure, you can donate a little more than half of your liver because it will re-grow inside both yours and the recipient’s bodies. Even more rare, portions of lung, pancreas and intestines can also be donated while you are alive.

But kidneys are by far the most needed organ. Of about 100,000 Americans on organ transplant lists, some 90,000 need a kidney. More kidney transplants happen every year: A record-breaking 28,000 were performed nationwide in 2023, but it was far from enough.  According to the National Kidney Foundation, 12 people die every day  waiting for a kidney transplant.

What Kidneys Do 

The kidneys are bean-shaped organs, each about the size of your fist, located just below the rib cage, one on either side of the spine.

“The kidneys are designed to get rid of the things that shouldn’t be in your blood, and then they fine-tune all the things that are there, so you make urine to get rid of extra water,” says Dr. Christie Izutsu, my nephrologist at the Queen’s Transplant Center. “And in the urine, all the extra toxins or the chemicals that shouldn’t be there are removed.”

Each of your kidneys has about a million filtering units called nephrons, which is the origin of nephrology, the word for the study of kidneys. “The kidneys are great sensors, and they can tell what needs to stay and what should go,” Izutsu says.

“The problem with kidney disease is often silent. There are no symptoms until the kidney disease is relatively advanced.” Early signs may include leg swelling, blood pressure that’s hard to control or blood in the urine, but those symptoms aren’t always present early on or are too inconspicuous to raise an alarm, she says.

“It’s not very specific. Over time, people just feel tired, no energy, poor appetite, a little bit of foggy thinking. … A lot of folks who are younger, who develop kidney disease gradually, really don’t notice any symptoms until they either get a transplant or they’re on dialysis. And then they say, ‘I didn’t actually realize how junk I felt till I felt better.’ ”

Because of that, chronic kidney disease usually goes undetected until an advanced stage. According to Harvard Health Publishing, symptoms don’t normally present themselves until “more than 80% of kidney function is lost.” But for patients with end-stage kidney disease, the condition is no longer subtle. Without dialysis, they’re unable to filter harmful toxins from their bodies; many say they feel like they’ve been poisoned.

Izutsu says per capita, Hawai‘i has one of the highest rates of chronic kidney disease in the country, and more young people are affected here than in other places.

“I’m not certain you can pinpoint one factor, but I think some of it is tied in ethnically, culturally.” For example, “we do have a strong Asian community,” she says, and Asians have a heightened “ethnic specific” risk for developing glomerular diseases that hurt kidney function.

Also, Hawai‘i has many people who have lived in “places around the world that do not have nephrology, and so a lot of patients come here with really advanced disease, and unfortunately, by the time they get here, they have stage five kidney disease and need to start dialysis,” Izutsu says.

Generally speaking, “We have a lot of folks who just don’t have access to good health education and disease management.” Today, Izutsu says, more focus is placed on addressing some of those disparities.

One option for people nearing kidney failure is dialysis, where patients are hooked by two needles to a machine that tries to mimic what kidneys should do, Izutsu says. One needle sends your blood into the machine to be filtered, the other carries the filtered blood back into your body. The unpleasant experience typically takes three to five hours per session at a dialysis center, with patients repeating the procedure two to seven times a week.

And unlike a working kidney, dialysis doesn’t help produce urine. Many dialysis patients make little to no urine, which means excess fluid accumulates in their bodies, causing swelling, shortness of breath and/or weight gain. Dialysis helps to remove some extra fluid but not as effectively as working kidneys do through regular urination.

Patients often feel exhausted for hours after dialysis. And because dialysis is so time-consuming, it can make it nearly impossible for some patients to hold a job, which leads to financial strain that makes matters worse. The bottom line is that dialysis is not a long-term solution: “Unfortunately, dialysis is not perfect, and a lot of patients pass while waiting for a kidney [transplant],” Izutsu says. According to the National Kidney Foundation, the average life expectancy on dialysis is 5 to 10 years.

Photos courtesy: Ryann Noelani Coules

Giving the Gift of Life      

Receiving a transplant is far superior to dialysis because a transplanted kidney can effectively filter blood and produce urine 24/7 for more than a decade, doctors say. Kidneys can come from deceased or living donors – both types of transplants usually work well, they say – but kidneys from living donors are better.

Izutsu says a kidney taken from a deceased person has little or no blood flowing through it until after it’s transplanted, which can reduce how well it works or how long it will last once the recipient gets it. “We do know that deceased donor-derived kidneys tend to last for about 10 to 15 years, sometimes far longer, though. But a living kidney has a longer life expectancy,” she says.

In addition to better blood flow, “the benefit of having a living kidney is that we’ve had the ability to do extensive testing [beforehand] on the donor, and we know that you are healthy, otherwise you wouldn’t take the kidney.” For deceased donors, much less testing is possible, so how well their kidneys will perform is more of a gamble. 

The vast majority of transplanted kidneys come from deceased donors – in Hawai‘i, it’s 80% to 90% of them, Izutsu says. Out of the 620 kidney transplants since 2012 at the Queen’s Transplant Center, only 75 came from living donors.

How Good Samaritan Donors Form Chains   

There are two kinds of living organ donations: directed and nondirected. Ninety-five percent of living kidney donations are directed, meaning the donor has an intended recipient. But a person can’t donate to a loved one or other specific person if their blood types, tissue types and/or antibodies aren’t compatible. The recipient’s immune system would immediately reject the kidney.

The National Kidney Registry makes nondirected transplants possible. The database includes information on people who need kidneys and those willing to donate them. It helps coordinate exchanges between multiple pairs of people: A donor gives a kidney to a stranger who is a match and in return, the donor’s loved one who also needs a kidney, receives one from another compatible stranger. These paired exchanges form what are known as “donor chains.”

The biggest challenge, however, is that donor chains typically need to start with a nondirect donor. Also known as an altruistic or “Good Samaritan” donor, these are people willing to donate to anyone who’s a match, with no intended recipient in mind. But altruistic donors are rare. According to a 2022 study published by the National Library of Medicine, only 5.6% of living kidney donors are nondirected.

Starting a chain was a huge motivating factor for me, as a nondirected donor. Six months after surgery, I learned that eight people were involved in my chain – four donors gave a kidney and four recipients received a kidney. My chain moved west to east and involved at least three different hospitals: Queen’s in Honolulu, the UCSF Transplant Center in San Francisco and the NYU Langone Transplant Center in New York City. It was a huge team effort involving dozens of people across the country.

One big perk for nondirected donors: The person gets five vouchers from the National Kidney Registry. The donor chooses five individuals who are not in imminent need of a kidney transplant to receive a voucher, which can be activated if any of them ever need a kidney transplant in the future, says Natalie Lamug-Funtanilla, a nurse and the living-donor coordinator at the Queen’s Transplant Center. The vouchers give people priority for transplants through the kidney registry, she says. Once one voucher is redeemed, the other four are voided.

The registry offers other benefits to help cover expenses and wages lost for both directed and nondirected donors. This includes travel, lodging and dependent care costs – I was reimbursed for all of the Uber trips I took to Queen’s for testing and visits – plus up to $2,000 per week for up to 12 weeks, for a maximum of $24,000 in lost wage reimbursement. Most donors take about two weeks to two months off work to recover. (It’s illegal for employers to fire employees for taking that recovery time.)

John and Jill’s Story   

After my left kidney was removed in surgery, it was rushed onto a flight to San Francisco (Godspeed!), where it was transplanted into my recipient the next morning. At that point, all I knew was that the recipient was in California and that our tissues were compatible. The recipient’s identity was kept secret from me and vice versa, and there was no guarantee I would ever find out who they were.

But three weeks later, Nurse Lamug-Funtanilla handed me a letter from my recipient, a 65-year-old man from San Francisco named John Jweinat. In part, it read: “For the last year, I have undergone dialysis four times a week, and it was very challenging for me. My daughter tested to be a kidney donor for me. Although we had compatible blood types, we did not have compatible tissue types, so she could not donate to me. As a result, we entered the Paired Kidney Exchange Program.”

“On Wednesday, April 24, 2024, your kidney was transplanted into me at UCSF Medical Center in San Francisco, and the surgery was successful. In return, my daughter donated her kidney to a 41-year-old woman in New York City. … Your decision to donate your kidney not only saved my life, but also the life of a 41-year-old woman in New York City, who wouldn’t have received my daughter’s kidney unless you donated your kidney to me.”

His letter moved me to tears and I was so relieved to hear that he and his daughter were doing well. Honestly, I was initially surprised by his age – he was 40 years older than me – since I was told that the process tries to pair donors with recipients of similar age. But I was glad, too; my parents are only one year younger than my recipient, and I would be absolutely devastated if I lost them now.

In his letter, John shared that he and his wife of 49 years, Maggie, have five children and four grandchildren. I’m thrilled that my kidney has given him more time with his family – in good health – and that he and his wife will be able to properly celebrate their 50th anniversary in August.

Six months after our surgeries, John happily agreed to share his perspective as a recipient for this story. “I originally started having issues with my kidneys when in my early 30s,” John says. His issue was “leakage of protein, which causes scarring to the kidney.” Six years after receiving that diagnosis, his kidneys were failing to the point that he needed dialysis.

His wife, Maggie, donated her kidney to him and that transplant lasted 10 years before failing. Then he received a second kidney from a deceased donor. “It was a fantastic match, and everything went well” for 17 years – longer than most deceased-donor kidneys – before he had to return to dialysis four days a week.

Once that happened, his and his wife’s schedules changed completely. On dialysis days, he had to wake around “four o’clock, get in the shower, have my coffee, and leave at like 5:30 to get there at 6, and from 6 to 10, I’d be doing dialysis.”

But John is a glass half-full kind of person: “On dialysis, some days are good. The majority, you feel weak, dizzy, exhausted, sometimes you might even faint. … But the next day after dialysis, you’re pretty strong again, and you feel normal, actually, for that one day.” 

Coincidentally, he received his third transplant with my kidney exactly one year after he resumed dialysis. And my birthday is April 2 – 4/2 – so when I found out his surgery was scheduled for April 24, 2024 – 4/24/24 – I took it as an auspicious sign. April also happens to be National Donate Life Month.

“Within two, three days, I was feeling great, really. Urinating, I had no pain, took no pain pills, nothing. And you know, they said that’s pretty rare, but everything went perfect,” he says of his immediate recovery. Six months after surgery, he says: “Everything so far is so good. Blood tests are good. Everybody’s happy and couldn’t be more thankful.”

He’s also extremely grateful for his daughter, Jill, who donated to the woman in New York City so he could receive my kidney: “God bless her, my daughter was very kind and generous to do that for me.”

Jill told me that as a child she remembers her father on dialysis and being “constantly worried” about losing him. Donating “was always something I wanted to do, and I think it’s because I saw my mom do it,” she says. When his second transplant started failing and it became clear he needed a third, she stepped up.

“It wasn’t a difficult decision for me. I don’t think a lot of people understand it or think it’s normal, but for me, it was a no-brainer,” Jill says. Although she and her father were crushed when they found out they weren’t a match, the news ended up being a blessing in disguise; by entering the paired kidney exchange program, they helped form a donor chain.

“It was great that I was able to help my dad get a kidney by doing it, but also that I got to actually help save someone else’s life. And so in the process of putting myself in the exchange, I was able to help save two people’s lives instead of one.”

As for John, he has some words of wisdom: “If you have your health, you’re the richest person in the world. Having your health, there’s nothing better than that.”

Photos courtesy: Ryann Noelani Coules

“The Best Physical You’ll Ever Have”   

When I contacted the Queen’s Transplant Center about becoming a living kidney donor, I heard first from Lamug-Funtanilla, the nurse who was by my side throughout the lengthy process – from first contact through pre-op through my recovery.

Her role as living-donor coordinator is to educate, support and manage the care of potential donors throughout the process, she says. “We provide them with information about the donation process to help patients make informed decisions. We coordinate the visits, meetings with the members of our transplant team, and we also schedule and arrange for the evaluation pre-op testing, such as blood and urine tests, imaging and cardiac testing.”

My transplant team included Nurse Natalie, Dr. Izutsu, an anesthesiologist, two Queen’s transplant surgeons – Dr. Lung Yi Lee and Dr. Makato Ogihara – as well as a social worker, pharmacist, nutritionist, financial coordinator and psychologist. And then there were the attentive nurses who gave me VIP treatment during my two days at the hospital, making sure I was in as little pain and discomfort as possible.

Early on, Lamug-Funtanilla also connected me to a living-donor advocate. These advocates are altruistic donors who share their personal experiences with potential donors and answer questions about what the process is like.  My living-donor advocate never learned who her recipient was, but she made it clear that it didn’t bother her or take away from her experience. Not knowing is an outcome she said I needed to prepare for and accept if I were to donate, and we agreed that all recipients are grateful for their donors, even if they choose not to come forward. An altruistic donation is about performing a good deed and expecting nothing in return – not even a thank you. Talking with her was especially insightful and reassuring.

Donor candidates must be in excellent health to be approved, so the testing is beyond thorough: extensive blood work and urine samples, renal scans, chest X-rays, EKGs, echocardiograms, and abdomen and pelvis CT scans. According to Jill, my recipient’s daughter who also donated, the team at UCSF described the process as “the best physical you’ve ever had.”

My experience going through evaluation was educational and my transplant team always had my best interests at heart. They never once pressured me to follow through but were incredibly supportive with my informed decision to donate and assured me I had the right to change my mind at any time.

Donors have an exit strategy in place that allows them to stop the process in a way that “their decision to opt out will remain confidential,” Lamug-Funtanilla says. “Potential kidney donors can change their mind about donating at any point throughout their process. … They have all the way up until the day of the surgery that they can change their mind, and we need to ensure that their decision is completely voluntary.” Even the minute before I was put under anesthesia on the operating table, I was asked one last time if I was sure I wanted to go through with it.

Surgery and Risks 

The world’s first living-donor transplant took place at a Boston hospital in 1954. Ronald Herrick – who donated a kidney to his identical twin brother, Richard – went on to live another 56 years. Richard lived an active, normal life for eight years after the transplant; his death was unrelated to that procedure. Hawai‘i’s first living-donor transplant was in 1969.

“Donor nephrectomy used to be an open large-incision surgery, requiring more postoperative pain management and longer hospital stay. We (in Hawai‘i) switched from open nephrectomy to laparoscopic nephrectomy in 2007,” Ogihara, one of Queen’s transplant surgeons, wrote me in an email.

In layman’s terms, medical advances have fine-tuned the living kidney donation process to the point where it’s now a minimally invasive, relatively safe procedure. “Nobody died directly from donating in Hawai‘i, but some unfortunately in the mainland over the years. Risk of dying from donor nephrectomy is still calculated as 0.02%, which is much safer than nephrectomy for cancer (about 1%),” Ogihara wrote. The need for a second operation, major organ failure or bleeding to the point the patient needs a transfusion, “are very low, less than 1%.”

In regard to long-term risks, Penn Medicine reports that about 25%-30% of kidney function will be permanently lost and individuals who donate a kidney have about a 1% chance of developing kidney failure. In the rare event a donor goes on to need a transplant, all living organ donors are automatically put to the top of the waitlist for a kidney transplant from a deceased donor. And donors that go through NKR’s Donor Shield program are given priority for a living donor transplant, should they ever need it.

Research actually indicates that living organ donors tend to live longer, on average, than the general population. This phenomenon is believed to stem from three key factors:

1. Donors must undergo extensive testing and meet stringent health standards to qualify for donation, ensuring they are in excellent physical condition.
2. Many donors remain highly motivated to maintain healthy lifestyles and prioritize their well-being after donation.
3. Emotional well-being plays a crucial role in overall health. Donation can be a deeply rewarding emotional and spiritual experience, and many donors report enhanced self-esteem, optimism, and a profound sense of fulfillment from helping another person in a time of need.

I stayed in the hospital for two nights after surgery, and the nurses made sure I received appropriate doses of medications to help minimize pain.

Two weeks in, my recovery started to significantly improve. And after one month, I was mostly back to normal, although I was only allowed walking and other light exercise until six weeks. Three months into post-op, I noticed no difference at all between how I felt before donating my kidney and after. My scars healed nicely in that time and are now barely noticeable.

Jill’s recovery also went smoothly. “You do need a support structure that’s going to help take care of you, but I will say I was walking around the second or third day. … It’s not easy, but it’s not like you’re out of commission for several months. I see scars on my body, but outside of that, I don’t feel a single difference in terms of how I feel prior to surgery versus after surgery. … I do feel a massive difference in terms of knowing that I helped, quite literally, save someone’s life.”

Final Thoughts 

To me, the coolest thing anybody can be in life is kind. It’s cooler than being smart, funny, charismatic, hardworking, creative or athletic. Those are wonderful qualities to have, of course, but I believe compassion makes the world go round. So, I strive to live my life guided by kindness as my core value. And donating was a fantastic way to put that principle into action.

If it’s something you could see yourself doing, wonderful! I highly recommend that you consider it, and even start the process, which you can stop at any time.

That said, nobody should ever feel pressured to donate. Nor are you a bad person if the thought of surgery or the risks worry you too much. What I will implore of you is that you make a concerted effort to perform small (or even medium-sized) acts of kindness every day, whether that’s donating money to charity, volunteering, advocating for good causes, helping a neighbor or even complimenting a stranger. Not only do these acts brighten someone else’s day, they will make you a happier, more fulfilled person. It doesn’t have to be a grand gesture; not all of us have the time, money or resources for that. But small acts of kindness add up and make the world go round too.

The Hawai‘i Pacific Health ESPN Honolulu Open, presented by HMSA, will feature over 33 indoor courts, tournaments for players of various ages and playing levels, corporate team challenges, and a competitive ProAm tournament with prize money.

The event will also include free pickleball clinics, exhibitions and an expansive expo.

“By providing pickleball players and enthusiasts with a premier venue to play, we’ll be able to attract players from around the state and world to compete in this rapidly growing sport,” says Matt Apana, GM of ESPN Honolulu. “Our goal is to grow this into a world-class pickleball event for both participants and spectators to enjoy.”

The event is supported by the Hawai‘i Tourism Authority and is intended to be an annual destination event. Tournament partners include the O‘ahu Pickleball Association, Pickleball Japan and tournament management company Pickleball is Great.

A portion of proceeds from the event will support Hui Mahi‘ai ‘Āina, a nonprofit that provides resources, education, and opportunities for self-sufficiency for the houseless population in Waimānalo and others in need.

“Staying active provides so many benefits for our health and well-being, from reducing the risks of chronic health conditions to improving mental health and enhancing overall quality of life,” says Ray Vara, president and CEO of Hawai‘i Pacific Health. “Pickleball is a great way for people of all ages and athletic abilities to stay active and have fun.”

ESPN Honolulu also launched a new pickleball program airing on Wednesdays at 2:30 p.m., on 92.7 FM and 1420 AM, hosted by Chris Hart. The first show aired Jan. 29.

Visit honoluluopen.com for more information or to register.

Family Promise of Hawai‘i is dedicated to keeping homeless families together, with a special emphasis on helping children.

“They’re not usually the focus of as much public policy and media coverage, but there are an estimated 1 in 30 young children in Hawai‘i who have experienced homelessness annually,” says Ryan Catalani, executive director of the local nonprofit.

“Experiences of homelessness and housing instability during those young ages can have a disproportionate effect over the rest of their lives. [Those experiences] can change the architecture of the brain and can lead to impacts in education, economic well-being, and even physical and mental health as children grow up.”

In 2024, FPH served over 500 families – a total of about 1,700 individuals – which is twice as many as in 2023 and a record for the organization. Catalani attributes the increase to an expansion of services on Maui after the Lahaina wildfires and the suspension of many Covid-related government rental assistance programs.

Circumstances change year to year, but the high cost of housing and the overall cost of living remain the root causes of homelessness in Hawai‘i, Catalani says.

He says families often reach out to Family Promise as their last option after exhausting all other financial and shelter support.

“Some families have a built-in safety net of other family members they can tap on and some families don’t.”

FPH’s main program provides families with private interim housing at no-cost. While there, families work with case managers to identify obstacles they might face and develop “re-housing” plans.

Once families leave the program, their case managers monitor their housing status. About 90% of reachable families are still housed after a year, says Catalani.

The nonprofit aims to keep families together long-term even in difficult times.

“Case management is at the core of all of our work, and I think this is just a fancy term for one-on-one individualized support that is housing-focused, meaning that is our first goal but it’s also very holistic,” he says.

“We’re not just trying to change the family’s life in the short term, but change the life of the next generation and moving forward.”

FPH’s second ‘Ohana Navigation Center opened in Wahiawā in December, providing temporary housing for up to 12 families at a time. The first center is in Mō‘ili‘ili.

Values

Respecting the dignity and worth of all people and treating everyone equally and fairly is one of FPH’s three core values, Catalani says.

“What it comes down to is believing every person, as an individual, has value,” he says. “That trickles down into a lot of our other values.”

The other core values are being housing-focused and connecting with other organizations, such as Healthy Mothers Healthy Babies and Continuum of Care, a federal program focused on homeless people.

FPH was founded in 2005 through grassroots efforts and relies heavily on continued community support, Catalani says.

“It’s that spirit of community engagement that I think has always made FPH so special.”

You can volunteer or donate at familypromisehawaii.org.

Illustrations: Jeff Sanner

Emma Sousa, 76, was born and raised in Hilo and still lives there. She married Laurence when both were 39. Before retirement she worked in human resources at Hawai‘i County’s Department of Finance, and he was a mechanical engineer for the county Department of Water Supply.

“Larry was such a wonderful person” – tall, handsome, intelligent, hardworking, she says, with “the biggest heart. … I was very, very fortunate to have been with him.”

In 2016, he was diagnosed with Paget’s disease of the scrotum. “It’s a rare and aggressive form of cancer,” but surgery seemed to have removed it all, she says.

However, four years later, Stage 4 cancer was found in his lymph nodes. Chemotherapy was started immediately, but “after a while, the treatments weren’t as effective, and so we were referred to Hawai‘i Care Choices.” The Hilo-based nonprofit offers hospice and palliative care, as well as bereavement services.

Sousa says Hawai‘i Care’s “very supportive management and staff” were at their side from day one, providing the medical equipment and support needed for quality care at home.

“The nurse, the social workers, the pastors, they were all there for us. … And the services included managing the medications, which gets rather complex,” she says.

A nurse taught Sousa how to treat her husband’s wounds so she could tend to him when the nurse wasn’t there. “I want to stress that the focus is on pain management. My husband was under excruciating pain” and Hawai‘i Care Choices helped control that, she says.

For the last two weeks of his life, the Sousas moved into the nonprofit’s residential facility for round-the-clock support. “It was like a family atmosphere, plus the facility was a state-of-the-art facility. I mean, it was like a hotel room with a lānai. Frankly, we felt like a king and queen because they really treated us so wonderfully.”

Emma Sousa, with her late husband, Laurence.

Laurence Sousa died peacefully on May 24, 2022. “It was a Tuesday night, 8 o’clock. They told me, ‘You can stay as long as you want,’ and so I stayed overnight. They didn’t rush me out. I wanted to spend my last night with my husband, and I really appreciate their compassion,” says Sousa.

“Words alone cannot express our appreciation that Larry had such wonderful last days of his life because of Hawai‘i Care Choices. And after Larry passed away, they were still there for me with their bereavement care. Lani [Wegert, a manager at Hawai‘i Care], the pastor, the social worker – they always check on me.”

Sousa says she and her husband both had Medicare and secondary insurance, which covered all costs. “We didn’t have to pay a cent,” she says, but “we donated to Hawai‘i Care Choices because we want Hawai‘i Care Choices to continue to provide care for others.”

And she became a volunteer. “That’s the best thing that we can do to show our appreciation and also have other families be blessed as we were blessed.”

Hospice Changed Health Care

Until the mid-20th century, Western medicine often pushed for aggressive interventions until the very end of life, an approach that frequently came at the expense of terminally ill patients’ comfort and emotional well-being.

Dame Cicely Saunders, a British nurse, social worker and physician, is widely credited with transforming the way we care for dying people. Having worked with terminally ill patients since 1948, Saunders concluded that much of their suffering was avoidable. She believed compassionate, specialized care was needed to address not just the physical, but also the practical, emotional and spiritual needs of those nearing the end of life.

In a 1963 lecture at Yale University, she introduced the concept of hospice care, a holistic approach that would lay the groundwork for end-of-life care worldwide.

One of Saunders’ key contributions was her advocacy for better pain management. At the time, it was common to withhold additional painkillers until previous doses had worn off, out of fear of addiction or overdose. Saunders argued that, for terminally ill patients who suffer great pain, the risk of addiction is irrelevant and the risk of overdose could be mitigated.

Saunders also reimagined the environment for patients. She rejected the rigid visiting hours of hospitals, saying that families should be free to spend lots of time with their loved ones. She saw hospice as a place of comfort, compassion and dignity for dying patients and their families, with bereavement services supporting the family after a patient’s death.

In 1978, the St. Francis Healthcare System became Hawai‘i’s first hospice care provider; the next year, Hospice Hawaii, now Navian Hawaii, became the second. There are now 11 licensed hospice care providers in the Islands.

Hawai‘i’s Rapidly Aging Population

Hawai‘i has the nation’s highest average life expectancy, 80.7 years, according to the Hawai‘i State Plan on Aging 2023-2027. Additionally, 24.9% of the population is 60 or older – and that’s projected to rise to 29% by 2040.

For people in that demographic, it is important to talk with loved ones about an advanced care plan – before it’s needed. They can ask questions like, “If you were in the final stages of a terminal illness, being kept alive by a machine, when would it be appropriate to pull the plug?” and, “If you couldn’t speak for yourself in a medical emergency, who would speak for you?”

“The law calls it a health care power of attorney or a health care agent,” Jeannette Koijane, executive director of Kōkua Mau, says of the second question. She describes her nonprofit as a “movement to improve care for those with serious illness and their loved ones.”

Koijane advises people to complete both parts of an advanced directive: “One is appointing that agent, and the second is talking about your wishes for the very end of life.” She says the stigma surrounding death in Western cultures too often discourages people from having these “difficult, but really important conversations” ahead of time. “If we can talk about things early, hopefully we can relieve some of that stress.”

Illustrations: Jeff Sanner

Hospice is A subject that many people put off

Patients with prognoses of six months or less to live qualify for hospice. But according to the National Hospice and Palliative Care Organization, half of hospice stays are for no more than 18 days, and “a full quarter of all beneficiary stays in 2022 were for five days or less.”

Hospice workers say they want to dispel misconceptions that prevent patients and their loved ones from reaping the full benefits of hospice care. Here, they address five myths.

Myth #1: Hospice hastens death

Perhaps the most dangerous and common misconception is that entering hospice accelerates dying because patients stop pursuing curative treatment. But a study published in 2007 in the Journal of Pain and Symptom Management looked at the survival rates of 4,493 patients and found the opposite is true: Patients who received hospice care early lived longer than nonhospice patients. Later studies reinforced that conclusion.

The original study showed patients lived an average of 29 days longer because “their pain and symptoms were managed” better, says Dan Haire, president and CEO of Navian Hawaii.

“And it’s not just living 29 days longer because we’re like pulling them across the finish line. These people are thriving. They’re feeling good. They’re living well, they’re surrounded by their friends. So it’s a great benefit,” Haire says.

Lani Wegert is the engagement marketing manager at Hawai‘i Care Choices, the agency the Sousas used. “If you look at the word disease, it’s ‘dis-ease.’ And what happens is, once we bring them on to hospice care, we’re able to minimize that to a point where they start to feel better, because they’re not all stressed out,” she says.

Hospice care improves the well-being of seriously ill patients and their loved ones in several ways. “We cover all medications that are related to somebody’s terminal prognosis. We cover all their supplies. We cover (and deliver) all of their durable medical equipment: hospital beds, bedside tables, bedside commodes, oxygen tanks,” Haire says.

But how can hospice extend life expectancy when it stops terminally ill patients from pursuing curative treatment? The research conducted and reported by the National Hospice and Palliative Care Organization attributes it to three main things:

1. Avoiding the unintended consequences and negative side effects of aggressive curative treatment.

2. Access to other forms of treatment and care that can be provided at home, which focuses on pain management, taking care of practical matters, and nurturing emotional and spiritual well-being.

3. Boosting morale, decreasing stress and increasing patients’ motivation to live because their physical and emotional needs are being attended to.

In addition to providing medical equipment and medications at home, there are several more specific ways hospice may improve quality of life.

Many hospices also have volunteers, but recruiting them can be challenging. Faye Mitchell, executive director of North Hawaii Hospice on Hawai‘i Island, says pairing volunteers with patients “is a lot like matchmaking.” The hospices take into consideration the personalities of both patients and volunteers – their interests, spirituality and “which town they’re from, because you know how that matters sometimes in Hawai‘i.”

Volunteers can be meaningful presences, providing companionship and emotional support, especially when loved ones need to step out. “They can be in the home while a wife goes to the grocery store for an hour and a half,” says Haire, and can minimize the guilt caregivers often feel when they take a break.

All hospices are required to offer bereavement services. “We have a formal bereavement program so that for 13 months after a patient passes, we follow and take care of that family,” says Haire. His Navian Hawaii nonprofit also provides bereavement support before a patient’s death.

Hospice care providers may also offer various adjunct therapies. “So that’s art therapy, equine therapy, pet therapy, music therapy, massage therapy, aroma therapy, all that stuff,” says Haire. These can be cathartic for both patients and their loved ones, he says. An art therapist, for example, can help a child with a terminally ill sibling or parent by giving them a creative channel for their emotions.

Hospice vs. Palliative Care?

All hospice care is palliative care, but not all palliative care is hospice care. Palliative care is for those suffering from conditions that are serious, chronic or life-limiting, but aren’t necessarily terminal. “The top diagnoses for palliative care are normally cancer, congestive heart failure, COPD and kidney, lung or liver disease,” says Wegert.

Palliative care patients can receive comfort care in their homes while pursuing curative treatments, such as chemotherapy, radiation, surgery and dialysis. “They’re still trying to get better in palliative care versus hospice, [where] they’re just trying to feel better,” Haire explains.

Research has shown that early use of palliative care in conjunction with curative treatment can improve a patient’s quality of life, reduce the cost of care and increase a patient’s chances of surviving a serious illness.

A cancer patient, for example, may use palliative care to help them deal with the negative side effects of chemotherapy. That care could be in the form of a nurse who comes to the patient’s home to administer pain medication or a respite volunteer who swings by to help with cooking and cleaning. Palliative care can also include acupuncture and visits from therapy animals. 

Wegert says patients in palliative care are “already in the pipeline with us. So, if it’s time for them to ramp up to the next level, which is hospice, they’re already familiar with us, so they’re not afraid of us. They know that we’re not the grim reaper.”

In recent years, both Navian Hawaii and Hawai‘i Care Choices changed their names, from Hospice Hawaii and Hospice of Hilo, respectively, to reflect that they offer services outside of hospice – namely, palliative care. It’s important to note that not all hospice providers offer palliative care.

Myth #2: Hospice is a place you leave home for

Koijane says people think of hospice as “a place you go.” In fact, while many hospice patients receive care in hospice facilities, hospitals, nursing homes and assisted living facilities, the majority are cared for at home.

According to Koijane, in Hawai‘i 87% of people who die at home are hospice patients. In addition to home being familiar and comforting, it’s usually the most convenient place for family and friends to convene and spend time with their loved ones, which can be a huge morale boost for everyone involved.

Every patient in hospice and palliative care is assigned an interdisciplinary team, which includes a physician, nurse, social worker and chaplain.

“All hospices have to have certain positions filled that take care of a person so that you’re handling the physical, psychosocial, psychological, emotional, spiritual. You have to cover all the bases,” says Mitchell.

As death nears, people often ponder the meaning of life, reflect on how they spent their time on Earth and what the afterlife entails. It’s also a time of introspection for friends and family as they process grief, a difficult emotion.

“A lot of times, people are contemplating their faith, their spirituality at the end, so it is something that is talked about and nurtured, whether it’s bringing in someone from the community, or it’s one of us who is coming in regularly,” says Mitchell.

Chaplains offer spiritual and bereavement support for people of all denominations and  beliefs. “They are not there to push religion, they’re there to provide support if you wish to have it,” explains Amy Goyer, AARP’s national family and caregiving expert.

After her father passed in hospice, a chaplain “was the first person that got there, and he was wonderful. Because, you know, my sisters and I were just devastated, and it was just support … someone there to help hold us together and help us through it.”

The chaplain and social worker are supposed to check in regularly with patients and their loved ones. The social worker can also help with practical matters in advance, such as organ donation and transportation of the body after death.

Goyer says her family’s social worker helped arrange her father’s body donation, “because we knew he wanted to do that. She helped a lot with the logistics … when all I wanted to do was cry.”

Indeed, hospice care is not only for the patient, but also for their loved ones. “We do medication delivery, we supply and deliver equipment. It relieves some of that burden of caregiving and a lot of stress,” says Melanie Dwyer, who started at Hospice Maui as a nurse and now serves as its CEO.

Dwyer’s colleague, Community Outreach Coordinator Anna Hill, adds, “One thing people don’t know is what death looks like in a home without hospice. If you’re under the care of a hospice physician, it’s considered an attended death, and a nurse can go out and complete a pronouncement, and it can be very seamless.” This grants families time to process their loved one’s death and to grieve, she says.

In contrast, “If hospice is not involved and it’s not attended by a physician, it is required for the Police Department and a lot of times the Fire Department [to come]. … There is this very limited amount of time because they have to do what they have to do. Instead of having that time and space, you’re talking to police officers, firefighters, the coroner. It’s very sensory overload when it could just be such a different experience.”

Dwyer adds that she’s seen firsthand the stark difference between the Police Department picking up deceased loved ones and zipping them in body bags versus mortuary workers “picking them up in hospice care, [which] is just wrapping them in a sheet,” where their faces can be visible and their families have all the time they need. The former adds an “extra layer of trauma and it’s so devastating to watch.”

But with so many people hesitant to begin hospice care, it happens all the time. “There’s a statistic that 80% of people want to die at home, but only about 20%” do, Mitchell says.

Koijane adds: “People think that you go into hospice and die like two hours later, as opposed to thinking we’re going to manage pain, we’re going to look at anxiety and stress, think about spiritual suffering, [and] help the family have some really important conversations.”

She reflects on her experience caring for her mother, who died in 1999: “Those conversations with my mom, I still remember them 25 years later. Super important conversations that, had we only been focusing on surgery and brain tumors and sitting around in a hospital, we wouldn’t have had the space for.”

According to the National Hospice and Palliative Care Organization, in 2022, 10% of hospice patients were in hospice for 48 hours or less and 75% for 87 days or less.

“It’s just the way we look at hospice as a country; we see it as a last resort,” Mitchell says of the relatively short hospice stays. “That is unfortunate, because people are missing out on a huge amount of benefits.”

Myth #3: Hospice is Expensive

Hospice has been covered by Medicare since 1982. Those benefits are also usually completely covered by Medicaid and secondary health insurance providers like Kaiser Permanente and HMSA. In cases where someone does not have insurance and needs financial assistance, many hospice care providers have donation funds to pull from. Both hospices and individual patients can also apply for and receive grants to reduce care costs or cover them entirely. 

To qualify for hospice care, patients must have a prognosis six months or less to live. “I calculated that if they were to use those six months, they would essentially be getting about $57,000 worth of benefits,” says Mitchell. The median stay of “18 days is nothing comparatively, so they’re missing out on nearly $60,000 in benefits.”

Patients who outlive their six-month prognoses can continue to receive care at no additional cost for as long as necessary. “Six months is only the entry point, but we’ve had patients on for almost two years. Essentially, if you are still declining and just taking care of comfort measures, you still qualify for hospice.” And for as long as you qualify, your insurance will continue to cover care.

Medicare also generally covers most palliative care costs in Hawai‘i. And in 2024, Hawai‘i became the first state to approve a Medicaid plan for beneficiaries that fully covers costs of palliative care in nonhospital settings.

Myth #4: Once you enter hospice, you can’t pursue any curative treatments 

This is half true: If you’re enrolled in hospice care, you’re no longer pursuing curative treatment for the specific condition that qualifies you for hospice. However, you can still seek curative treatment for other conditions you might have.

Goyer’s father, for example, had Alzheimer’s, which could have made him eligible for hospice care. But she says she had reservations because hospice rules would prevent him from taking his Alzheimer’s medication.

“To me, everyone knows that’s not a cure for all Alzheimer’s. Why would he have to go off of it? It’s a comfort treatment really. It’s to make him be able to get up out of the chair at that point in the disease or possibly communicate a little more. So I didn’t want to take him off that,” says Goyer.

“But he also had congestive heart failure, so they were able to admit him to hospice” with that diagnosis, she says. He stopped pursuing treatment for his congestive heart failure, but “he was able to stay on his medication for the Alzheimer’s until he died.”

Also keep in mind that you can opt out of hospice care if you decide to pursue curative treatment. “I think people have this misconception that once they enter hospice, they can’t leave; but you can leave anytime and then come back whenever,” Mitchell says. “People can actually just try it out. It sounds funny, but we have people do that. … So it’s a great option, and you’re in charge of it.”

For some patients, hospice provides a much-needed break from aggressive curative treatments, such as high-dose chemotherapy and invasive surgeries, allowing them to focus instead on their comfort and well-being. When they’re feeling ready and strong enough, they can leave hospice and resume curative treatments alongside palliative care.

Some patients’ health improves so significantly after shifting from curative treatment to pain management and comfort care, they no longer need to be in hospice, Mitchell says. “About 18% of our patients (at North Hawaii Hospice) ‘graduate,’ meaning that they get so well that they can’t qualify for hospice anymore.”

At Maui Hospice, 20% of hospice patients “graduate,” Dwyer says. “So I really sometimes struggle with that prognosis piece” of six months or less to qualify for hospice, because “that is a real deterrent for people. When people say yes to hospice care, it feels like saying, ‘Yes, I am going to die in six months.’ But that’s not always the case.”

One example is Jimmy Carter. The former president was open about his decision to enter hospice in February 2023. It was almost two years before he died in December 2024 at age 100, making him the longest-lived U.S. president ever.

Myth #5: All hospice care providers are the same

Wegert says several hospices in the state offer palliative care, “which is pre-hospice for sure, then hospice care, and then all of us are mandated to provide bereavement care as well. But I’d have to say that we’re not all the same.”

Because care providers vary in size, specialties, services offered and overall quality of care, she suggests that people do their due diligence before deciding which hospice is right for them or their loved ones.

On O‘ahu, the hospice care providers are Bristol Hospice Hawaii, Islands Hospice, Malama Ola Health Services, the St. Francis Healthcare System and Navian Hawaii. Of those, Navian is the only one that offers hospice care for children. And while St. Francis is the only Catholic-based hospice in Hawaii, it supports spiritual care for patients of all faiths. 

Hospice care providers must meet specific requirements set by Medicare, state licensing regulations, and/or accreditation standards. While some stop at the minimum requirements, other providers go beyond.

For example, Dwyer says, “There are certain things that are required by Medicare that are very simple regarding grief and bereavement, but you can really kind of hone in on the differences between programs and what they offer.”

She says it’s important to ask questions to clarify what specific services are offered and which ones aren’t, such as, “Do you do in-person groups and virtual groups? Do you do events and things to help people during the holidays? Because that first year is really hard going into the holidays after you’ve had a loved one die.”

Hospices especially differ in the kinds of adjunct therapies offered. Some hospices may only fulfill the required roles of the interdisciplinary team, leaving volunteers to do basic respite. Others offer extra services.

Dwyer says Maui Hospice is “kind of unique” in that it not only covers acupressure, reiki and massage therapy, but also a variety of treatment modalities for each of those therapies. “We offer to both the patient and the primary caregiver, and so they can have up to eight sessions that are complimentary, where we send the providers out to their homes.”

For-profit Hospice vs. Nonprofits

An important distinction among hospice care providers is whether they operate as for-profit or nonprofit organizations. When the modern hospice care movement began in the 1960s, and on into the 1970s, it was mostly nonprofits and volunteer driven. That started to change when Medicare began paying for hospice care in 1984, which incentivized for-profit businesses.

Hospice in America has since become a growth industry dominated by for-profit enterprises, many of which are regional and national chains. Today, three-quarters of the nation’s more than 5,300 hospice care providers are for-profit. 

A 2023 study published in the Journal of the American Medical Association Internal Medicine included a survey of more than 650,000 caregivers whose loved ones were receiving hospice care from 3,107 hospices.

Although the study found variation in quality of care given by both for-profit and not-for-profit hospices, the authors’ preliminary research indicated that, on average, for-profits performed significantly worse in several areas: “Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff.”

This survey asked respondents to score eight measures of hospice care performances, including “communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics.”

The study concluded that “family caregivers reported worse care experiences at for-profit hospices compared with not-for-profit hospices.”

A study published in 2024 in the American Journal of Hospice and Palliative Medicine, which specifically focused on the 50 largest hospices in the U.S., reported similar findings: “Caregivers and employees had better experiences with nonprofits than for-profits. Anger and frustration were expressed toward large, for-profit providers more focused on admissions, profiteering, and paying dividends than actual care.”

Some people I interviewed who worked for local nonprofit hospices had qualms with the for-profit model. “Sadly, there is quite a lot of corruption in hospices – not here that I know of, but on the mainland it’s like, really, really rampant,” Wegert says.

Mitchell of North Hawaii Hospice says: “If you think about it, it makes sense because they have certain financial goals that are front and center. If your focus is profit, that’s going to happen, whereas I’m so glad I’m part of a nonprofit.”

The largest hospice care provider in the state, Bristol Hospice Hawaii, is a for-profit organization and part of a national chain headquartered in Utah. Bought by private equity backer Webster Equity Partners in 2017 for $70 million, it offers care in 15 states.

Dani Moreno, a former volunteer coordinator at Bristol Hospice Hawaii, says the company had “a little over 600 patients” when she started working for Bristol in February 2024. When she resigned eight months later, she estimates the company had around 830 patients. 

“That’s a ridiculous amount of growth. I can’t imagine [they’re] caring for people well when [they’re] spread so thin. Absolutely, it’s sacrificing quality of care,” says Moreno. “I’m not saying individually people are bad. I’m saying the system that we’re in makes it really hard for us to take care of people.”

Two people who previously worked at Bristol and are not named in this story estimate that Bristol now has about triple the number of patients in Hawai‘i compared to the Islands’ second-largest hospice group. Moreno says her former employer should stop adding to its numbers because “the rapid rate of growth has not been sustainable.” I contacted Bristol Hospice Hawaii about this article, and its senior executive director and regional VP agreed to a Zoom interview for the following week. But 15 minutes into that interview, the Bristol representatives ended the call.

Once I let them know I was going to ask about the differences between for-profit and nonprofit hospices, they said they had to jump off the call because they were being paged by a surveyor. Minutes later, I received an email from them that stated: “Please just leave Bristol out of the article as I won’t have time (to talk) today due to the current survey going on.” 

Hawaii Business Magazine felt the perspective of the state’s largest hospice provider was important to this story, and that readers should understand Bristol chose not to participate.

Mitchell of North Hawaii Hospice says all three of the nonprofit hospices on Hawai‘i Island work together and their dynamic is much different than that at for-profits: “I’m friends with the executive director of Kona Hospice and the executive director of Hawai‘i Care Choices, and we share so much with each other to help each other out. We’re not in competition. In fact, we’ve got each other’s backs.”

Unlike for-profits, nonprofits are required to make certain information public, including their yearly revenue, funding, assets, expenses, executive compensation, salaries and other wages. You can find that information on online databases such as ProPublica and Cause IQ.

“I don’t think I could work for a for-profit hospice, because I feel like all of it is not coming back into the organization to help the community. That’s really sad to me, because all the money that we make, we have to put it back into the company to provide the best care possible. That’s the focus versus, ‘We gotta make sure that whatever shareholders are making money.’ So there’s a philosophy divide for sure,” says Wegert.

Nonprofit hospice providers currently outnumber for-profit providers in Hawai‘i, 8 to 3. Based on my research, all of them operate exclusively in Hawai‘i except for Bristol.

His Mission: Alexander MacGregor earned his master’s in occupational therapy at Loma Linda University in California in 2016 before moving to O‘ahu to serve the island’s injured workers. He and his colleagues help people with workplace injuries like carpal tunnel; sciatica; and neck, back and shoulder pain, and also provide education on healthy ergonomic practices that can prevent these musculoskeletal conditions.

“While working in occupational therapy and clinics helping others recover from injuries, I came to realize that a lot of the conditions I was treating were attributed to the client’s profession,” MacGregor says. “They were spending upward of 40 or more hours a week completing office work at a computer workstation, which for many working in an office, seems relatively safe – but improper posture and poorly designed workspaces can really result in painful conditions over time.”

His Work: MacGregor began working as an Ergonomic Consultant for Hawaii Ergonomics in 2018. The company offers virtual and in-person ergonomic assessments and information sessions to educate clients on best practices for healthy workplace efficiency and how to reduce injuries. They assess work-fromhome and office workplaces, reviewing computer, desk and seating arrangements.

“I’ll usually make any required adjustments that I’m able to do and also educate the client on how to better improve their ergonomic body positioning to maximize comfort. I also bring along a bag with some ergonomic equipment options for them to try. Ergonomics isn’t necessarily a one-size-fits-all approach, so after spending time with the client, we then create a personalized report and highlight proper ergonomic positioning and the most appropriate equipment and vendor recommendations for them.”

Ergonomics: He offers an example. “If a worker’s keyboard or mouse is not positioned at the correct angle or height, it can cause added strain on the wrists in the form of a compressed nerve, which limits oxygenation and blood flow to the muscles. It starts as discomfort but develops over time and, in the long term, it can become a painful and debilitating condition, resulting in decreased workplace productivity and absenteeism.”

While some clients consider short-term solutions like massage, chiropractic treatment or even surgery, he says that by redesigning workspaces, the company helps workers to be more comfortable and efficient, as well as more satisfied with their jobs.

“The employees usually report that they’re more engaged and they make fewer mistakes. It’s good for business’s bottom line.”

Correcting Myths: MacGregor says social media is an unreliable source for ergonomic information. “I might walk into an office and find somebody is sitting on a medicine ball expecting that what they read online will help improve their comfort at work. There’s a lot of misconceptions out there on social media as far as what’s best for ergonomic standards, but we know all the science behind the education we’re providing.”

Impact: “When we find clients the perfect office chair, or if they report back, ‘Hey, I haven’t had any discomfort this week with my new setup,’ it really just keeps me motivated to keep spreading the word about our services. It’s good for businesses to have employees who are comfortable, healthy, happy and productive on the job, instead of coming home fatigued and in pain. A lot of people want to work really hard so they can enjoy their retirement, but we say, ‘Don’t let discomfort lead to disability.’ ”

The Maui Farm is a nonprofit that provides a safe place to live for women and children who have experienced traumatic, violent relationships or homelessness. They are nurtured there and learn essential skills for self-sufficient living.

“Families can rest and reside as they navigate this transitional time and space in their lives,” says Executive Director Gabrielle Schuerger. “The campus includes a small farm in which the program participants help to care for the animals and propagate food for the families. It is a beautiful space where hearts and lives are transformed.”

Photo: courtesy of The Maui Farm

Last year’s wildfires left the farm structurally undamaged but financially stressed. Schuerger says government funding has slowed just when the farm’s programs are needed most.

“We have seen a significant increase in requests for our services, even as funding is decreasing as a result of shifts in countywide service priorities,” she says.

On top of that, people who want to leave the farm face much higher rents on Maui and fewer housing options than before the fires. They are often unable to find a new home.

“Many of the local families we serve are having to move off-island. It’s an extremely difficult situation,” Schuerger says.

Three Decades of Service

Photo: courtesy of The Maui Farm

The farm was founded in 1993 and initially provided long-term care for youths from troubled families. Today, the farm’s main residential programs empower families to become educated, self-sustaining members of the community. They learn skills to help them as parents and as heads of their households, and receive guidance on possible jobs and careers. Children receive a farm-based education through lessons and hands-on experience, and get to socialize with other youths.

The Family Strengthening Program’s transition plans help guide participants through the process toward independent living.

Natalia Barboza was once a resident at The Maui Farm. “One-on-one meetings with staff allowed my family to identify needs, create a plan and focus on the necessary steps to become financially and emotionally stable,” says Barboza, who is now a case manager at the farm. “I was able to further my education, raise my income, attain child care and transportation, secure housing and strengthen my family.”

Schuerger says such personalized plans help families “navigate from crisis to stability to self-sustainability. The Maui Farm staff then meets with each family weekly to map out action steps and provide support for implementing their transition plan, until the family is ready to exit the program and live a healthy, stable and self-sustaining life.”

The farm’s Stipend Program provides practical job training and skills such as project management, agronomic practices, effective communication and self-accountability.

The Maui Farm also hosts community programs such as farm tours and encourages others to get involved. For instance, volunteers can help with garden upkeep and service projects. To sign up for community programs or to volunteer, visit themauifarm.org.

Photo: courtesy of The Maui Farm

Donations are welcome at the same website.

If you or someone you know is experiencing domestic abuse, call the National Domestic Violence Hotline at 800-799-7233, or text BEGIN to 88788.

Hawai‘i’s Department of Human Services operates a domestic violence hotline at 808-531-3771.

HIS WORK: Joeziah Routt-Rivera visits clients’ homes to ensure their well-being. Some of his responsibilities include bathing clients, monitoring their nutrition and ensuring they take their medicines, and general housekeeping. Routt-Rivera does other nurse-related tasks as well, such as checking vital signs.

“Typically, our assistance is focused on indoor tasks, such as household chores, meal preparation, medication reminders and personal care. However, we also provide transport services for medical appointments and errands,” he says.

“We don’t engage in yard work and outdoor tasks, but we do offer companionship services, which may include sitting in the yard or on a porch with the client and providing company and support in outdoor areas, if that is their preference.”

He says spending meaningful time with his clients is an essential part of the job. That might include accompanying them on their daily activities, listening to their life stories and reading the newspaper to them.

The company he works for, Vivia Cares, says it prioritizes quality time and care with patients and that assistants such as Rivera work to achieve their clients’ goals, regardless of the time it takes.

EXTENSION OF HIS CHILDHOOD: Rivera attributes his caring spirit to his upbringing. As a child growing up in Wai‘anae, he was taught to always give back, even when he wasn’t expected to.

“My childhood is what led me down this path. Growing up, I was raised by my family to always help others and to always give back. Even if it’s in the slightest way, at least you’re giving and doing something.”

Being a caregiver is an extension of that childhood, he says. “I enjoy helping others and that’s why I love this job, and why I enjoy being in this part of the medical field.”

GROWING FIELD: As Baby Boomers continue to age, the demand for senior care – at home and in nursing homes – will likely grow, as will the need for caregivers like Rivera.

Rivera encourages others to find fulfillment in caregiving careers. “It makes me feel so good that I’m giving back and helping them because they’re not able to. I know a lot of people say the field isn’t meant for everyone, but as long as you really want to help, the clients sense that appreciation and passion you have for doing this type of job.”

When asked what it charges, Vivia says its “services are personalized to the needs of the senior and family. As such, they only pay for what they need and want based on their requested tasks. Each situation is unique and Vivia is responsive to the particular needs of each senior and the pricing is tailored to their specific budget.”

Mindfulness helps create stronger workplaces. I’ve witnessed its transformative power through my work delivering tailored mindfulness training programs to a wide range of local organizations in recent years: from boardrooms on Bishop Street to inside the walls of the Halawa Correctional Facility. It’s time we embrace mindfulness at work, leveraging its benefits backed by rigorous scientific research.

Far from the caricature of a bearded man “om-ing” in lotus position, mindfulness is simply about embracing the present moment with nonjudgmental awareness and kindness. It’s like greeting the here and now with aloha. Scientific research consistently demonstrates that regular mindfulness practice yields significant rewards for people’s overall well-being and effectiveness.

In the workplace, mindfulness offers tangible advantages to employees and leadership alike, serving as a potent tool for stress reduction, improved decision-making and better interpersonal relationships. Executives who embrace mindfulness create stronger teams, with leaders who are present, authentic and compassionate.

Amid the onslaught of distractions in the modern world, mindfulness helps us to regain our footing, enabling us to direct our limited attention to what really matters. Whether it’s completing that uncomfortable task lingering on your to-do list or putting down your phone as your daughter tells you about her day, mindfulness empowers us to live and work with greater purpose and meaning.

For decades, we’ve recognized the benefits of regular exercise for physical fitness. Now, we’re discovering that mindfulness training and regular practice similarly enhances mental fitness. The training programs I deliver are grounded in the science of mindfulness, offering practical insights into its benefits and applications. I work to demystify mindfulness and clear up misconceptions. As I assured a recent U.S. Army group, you don’t need to stop your thoughts and you certainly don’t need to put on a robe and move into a cave.

Together, we practice mindfulness exercises and cultivate skills that help us navigate the challenges of daily life and work. Mindfulness programs elevate individual well-being while also breathing new life into organizational culture.

Hawaii Business Magazine’s Stressed to Strong conference in February made clear that workplaces across the state need to take wellness seriously to support current employees and attract new talent. Mindfulness programs can help us cultivate the strength and resilience necessary for Hawai‘i’s workforce to thrive.

This Month’s Expert:

Noah Pomeroy, Founder, Mindful Work

Munro has been program manager for HealthCast, a collaboration between the Nancy Atmospera-Walch School of Nursing and Department of Theatre + Dance, since its inception at UH Mānoa in 2013.

Unique Opportunity: In the program, actors pose as patients to give nursing students the chance to deal with situations they might face in their careers, Munro says.

“A lot of health care institutions use simulation to bridge classroom learning and caring for actual patients. Here at the simulation center, students get to practice their skills, see what they’re doing well and learn from mistakes.”

Most of the time, nursing students practice with mannequins. However, certain social and emotional scenarios require humans to simulate person-to-person interactions, Munro says.

Fulfilling Work: “It’s really awesome when you’re in the room as the simulated patient, as the actor, and you can see in real time when those learning moments go off with the nursing students,” he says.

After every simulation performance there is a debrief, where nursing students reflect on what they did well or not so well, and actors can give feedback, which Munro says the students crave.

“We’ve had a lot of actors come through and have tapped into a more truthful emotional pool in their acting. So many say they can’t cry on the spot or have trouble conveying grief or pain, and then 15 seconds into the performance they are sobbing and sniffling. There is something about simulation performance that really helps actors become more confident in their abilities.”

Challenges: Munro says a constant challenge is scheduling. HealthCast does simulations every week and the current pool of actors is made up primarily of students, so it takes a lot of coordination to accommodate classes, shows, homework, jobs and other demands on their time.

Day in the Life: Some days Munro runs rehearsals, brings new actors onboard, gives tours of the center, provides performance feedback and supports actors. Other days he is learning how to use cameras and edit videos now that UH has received a grant to support simulation learning in the Pacific Islands.

Importance: Sometimes simulation requires actors to play roles in deeply emotional scenarios, like ending life support for a spouse, so the program likes to get ice cream to cheer them up afterward.

Munro says that in one ice cream debriefing with the actors, a professor popped in and said: “I really want to thank you for sharing your time, talent and willingness to go there for our students because you are helping people you will never meet. Because you went there today, our doctors, nurses, spiritual care providers and social workers are better prepared to help families who are going through this.”

Munro adds: “These are some of the best performances we’ll never see. Simulation is confidential and just for a handful of students, but because of that experience, health care students are going to do better work when they are with their clients and in the community.”

Adding Elements: “We’re starting to go beyond just our actors and our theater and dance students. We now partner with our makeup students who help do things like old-age makeup and wounds to make simulation more realistic. We also partner with our scenic design students who create new props for some scenarios and deepen the relationship between theater, dance and nursing.”

HealthCast next plans to support simulations at UH West O‘ahu and Leeward Community College.

Get Involved: While most actors in simulations are students, HealthCast does recruit from the community to provide the program with more diversity and authentic representation. Those interested can email Munro at abmunro@hawaii.edu to learn more.