The power of listening when helping those with a terminal illness

by Tim Ditman
OSF Healthcare
“I was in my early forties with a lot of life before me when a moment came that stopped me on a dime.”

Country music star Tim McGraw’s “Live Like You Were Dying” tries to sum up the emotions of a terminal illness.


Rita Manning
Pastoral Care & Bereavement Coordinator
Photo provided

It’s not just Hollywood. Rita Manning counsels patients and their loved ones as a pastoral care professional and bereavement coordinator for OSF HealthCare. She says there are ways to make the person’s final days more peaceful.

Getting the diagnosis

Before the “what’s next?” phase sets in, Manning says gut reactions to a terminal illness diagnosis can vary widely. Some have been in declining health, and they may show less of an emotional response. Others learn the news unexpectedly and abruptly.

“Those that are broadsided probably have more of an impact of mental and emotional things,” Manning says.

People might talk about being afraid of death or ask lots of questions. Some may want to go “full speed ahead,” as Manning puts it, and do things while they can. They may travel or catch up with old friends. Others may retreat and want to contemplate the future alone. Depression and other mental health issues can follow.

Helping out

Here’s a phrase to try when starting the conversation with a loved one:

“You may not want to talk about this now. Just know that whenever you are ready, I’m ready to listen and be there,” Manning says, putting herself in the shoes of a caregiver.

In other words, try to meet the person where they are. Don’t try to fix something that can’t be fixed. Acknowledge that the news is tough. Sit and cry with your loved one if that’s the emotion they show. Or if you don’t wear your emotions on your sleeve, offer help in other ways. Offer to mow the yard or take care of groceries.

Manning advises to avoid cliché phrases like “How are you doing?” Instead, try “How’s your day treating you?”

Another poor phrase: “You’re going to a better place.”

“Those types of phrases might be factual for them in their faith journey. It still may not be the time they want to hear that,” Manning says.

End of life discussions

It’s not uncommon for an adult with a terminal illness to put off talking about their funeral, estate and other matters once they have passed away. But there comes a time when there’s little time left to get things in order. Approach it delicately, Manning suggests.

“We just want to honor your wishes,” Manning says, again posing as a caregiver. “If you could help us understand what those are, that would help us to know how to move forward.”

Other phrases that may work: What is your greatest concern? What is your greatest hope? How can we make your final days full and comfortable?

Children and terminal illnesses

Consoling and supporting a child who will soon pass away requires a different approach, Manning says. You should still be honest, but they may not understand death. So, explain it in a way they understand.

First, reassure the child that the situation is not their fault.

Try something like: “Sometimes people just get sick. As hard as we try, we just can’t find that solution to make you well again.”

If they ask a question, an adult may need to ask one back to make sure they grasp what the child is thinking. For example: does the child’s stomach hurt because they are nervous or because of the illness? The response will shape what the adult says.

Relate to what children know, like a pet who died or even leaves falling off trees in the winter. But don’t be afraid to use words like “death” and “dying.” Using words like “lost” may cause confusion, Manning says. For example: a parent says, “We lost grandma today.” A child may respond, “Let’s go find her.”

Manning adds that there are books from trusted sources that talk about death.

“They’re still going to have questions,” Manning points out. “But it starts the hard task. Reading helps them engage and understand better.”

Learn more

Learn more about resources for people nearing the end of their life on the OSF HealthCare website.


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New Illinois law shifts repatriation and reburial power to tribal nations

by Logan Jaffe



In 1999 the Sac & Fox Tribe of the Mississippi in Iowa, the Sac and Fox Nation of Missouri in Kansas and Nebraska and the Sac and Fox Nation, Oklahoma, repatriated the remains of 34 of their ancestors held by the University of Illinois Urbana-Champaign.

ProPublica - America’s institutions maintain control of more than a hundred thousand remains of Native Americans as well as sacred items. A federal law, the Native American Graves Protection and Repatriation Act, was meant to help return them, but decades after its 1990 passage, many tribes are still waiting.

Illinois Gov. J.B. Pritzker signed into law in August sweeping reforms that for the first time will give tribal nations — not state agencies, universities or museums — final say over how and when the remains of their ancestors and sacred items are returned to them.

“With the Governor signing these bills into law, Illinois is proving that a government is capable of reflecting on its past injustices and planning for a future that respects and celebrates our interconnectedness,” Prairie Band Potawatomi Nation Chairperson Joseph “Zeke” Rupnick said.

The newly signed Human Remains Protection Act was shaped by tribal nations over more than two years of consultations with the Illinois State Museum and the state Department of Natural Resources. The legislation unanimously passed the state House and Senate this spring and follows publication of ProPublica’s “The Repatriation Project,” an ongoing investigation into the delayed return of Native American ancestral remains by universities, museums and government agencies.

“Here in Illinois we believe in justice, and we won’t hide from the truth,” Pritzker said. “It’s up to us to right the wrongs of the past and to chart a new course.”

The law makes it the state’s responsibility to help return ancestral remains, funerary objects and other important cultural items to tribal nations, and it compels the state to follow the lead of tribal nations throughout the repatriation process. It also establishes a state Repatriation and Reinterment Fund to help with the costs of reburial, tribal consultation and the repair of any damage to burial sites, remains or sacred items.


Tribal nations have pointed to the lack of protected places for reburial in Illinois as among the highest barriers to repatriation.

Existing law to protect unmarked cemeteries in Illinois failed to create a pathway for tribal nations to rebury ancestral remains that had been disinterred. That law, passed in 1989, deemed most Native American remains to be property of the state.

The new law increases criminal penalties for the looting and desecration of gravesites, while adding a ban on profiteering from human remains and funerary objects through their sale, purchase or exhibition. Moreover, it mandates tribal nations be consulted as soon as possible when Indigenous gravesites are unintentionally disturbed or unearthed — such as during construction projects.

The measure follows decades of Indigenous activism, new leadership within the Illinois State Museum and IDNR, and ProPublica reporting that revealed widespread delays in institutions’ compliance with a 1990 federal repatriation law. ProPublica found that more than 30 years after passage of the Native American Graves Protection and Repatriation Act, museums and other institutions nationwide still hold more than 100,000 Native American human remains.

The failure to repatriate expeditiously, as required by NAGPRA, is rife in Illinois, where more than 15,461 Native Americans have been excavated — more than from any other state, the ProPublica investigation found. The vast majority of those ancestors are still held by Illinois institutions. Previous policies at the Illinois State Museum, which holds the remains of at least 7,000 ancestors, favored the scientific study of remains over their return to tribes for reburial.

Sunshine Thomas-Bear, the cultural preservation director for the Winnebago Tribe of Nebraska, said, “It has been a rough road in trying to get the protection and rights that non-Natives have in protecting our ancestral burial sites and homelands.” She added that many Illinois gravesites have been desecrated and destroyed.

“This bill cannot remedy the damage that has been caused thus far, but perhaps it will protect the sites that remain in our homelands,” Thomas-Bear said, though she emphasized that the law is “a step in the right direction” for rebuilding relationships.

Significantly, the law empowers IDNR to set aside and maintain land solely for the reburial of repatriated Native American ancestors and their belongings. Tribal nations have pointed to the lack of protected places for reburial in Illinois as among the highest barriers to repatriation.

For example, in 1999 the Sac & Fox Tribe of the Mississippi in Iowa, the Sac and Fox Nation of Missouri in Kansas and Nebraska and the Sac and Fox Nation, Oklahoma, repatriated the remains of 34 of their ancestors held by the University of Illinois Urbana-Champaign, records show. The tribes wanted to rebury their ancestors at or near the site where they were originally interred: a former Sauk and Meskwaki village in Rock Island County along the Mississippi River. But the state wouldn’t allow the tribes to use the land, said Johnathan Buffalo, the tribal historic preservation director of the Sac & Fox Tribe of the Mississippi in Iowa. They had to rebury the ancestors in Iowa — west of the Mississippi River, the same borderline used by the U.S. government when it expelled all Native American tribes from the state during the 1830s.

“That old wound opened when Illinois did that to us,” Buffalo said.

More than 30 tribal nations are recognized by the state museum as having cultural and historic ties to Illinois. The consultations, which are ongoing, began with discussing the repatriation of more than 230 ancestors unearthed from what today is known as Dickson Mounds.

“The need to rebury and to think about a different way of being in relationship with land from the state side was reiterated to us from just about every tribal nation,” said Heather Miller, the director of tribal relations and historic preservation for the Illinois State Museum. Miller is also an enrolled citizen of the Wyandotte Nation.

The new law is part of a broader effort to recenter Native voices in Illinois and within state institutions, a commitment brought to the Illinois State Museum in part by its former director, Cinnamon Catlin-Legutko, before her death this year. It was signed in tandem with two other laws; one requires the history of Native Americans in the Midwest be taught in Illinois public schools and another that bans school boards from prohibiting students from wearing cultural or tribal clothing and regalia in schools and at graduation ceremonies.

Interim Director Jennifer Edginton said the museum and IDNR, which oversees the institution, have “been looking very inward” to address the previous absence of Indigenous worldviews in their programs, collections and exhibits.

“We don’t want to continue that erasure, or stereotypes, or things that the museum field in general, unfortunately, has done since the inception of museums,” Edginton said.

The Legacy of Forced Removal

Today, no federally recognized tribes reside in Illinois, though Chicago is home to one of the largest urban communities of Indigenous people in the country. The absence of an organized political presence and tribal government has in part led to the state having among the worst repatriation track records in the nation.

“Forced removal affects everything,” said Miller, referring to the expulsion of Native American tribes from Illinois throughout the 1800s. “There was the physical removal, but that also removed [tribal nations] from being able to have a say in law, to have a say in voting, and from participating in all the ways the state operates and functions.”


With passage of the new Illinois law, that balance of power will for the first time tip toward tribal nations whose ancestral lands became the state of Illinois.

That legacy has also contributed to Illinois museums designating many of the ancestral remains in their collections as “culturally unidentifiable” under the federal repatriation law. That designation has been misused by some institutions to avoid repatriating remains under NAGPRA, giving museums outsize power in consultations with tribal nations.

With passage of the new Illinois law, that balance of power will for the first time tip toward tribal nations whose ancestral lands became the state of Illinois.

“We have the ability to now bring those communities that were forcibly removed in violent ways back here,” Miller said. “Rather than being a ‘removal state,’ Illinois could be known as a ‘new relations’ state instead.”

The Future of Funerary Items

Another significant aspect of the new law is that it prohibits institutions from charging admission to view human remains that are Native American and any items that were originally buried with those individuals. Although the public display of Native American ancestral remains by museums fell out of practice after the passage of NAGPRA in the early 1990s, the public display of their funerary items has not.

After Dickson Mounds Museum in the early 1990s closed a burial exhibit that displayed the remains of more than 230 Native Americans, the institution still maintained a permanent exhibit that featured items taken from Indigenous gravesites across the state. As ProPublica reported this year, in September 2021, curators dismantled much of the exhibit at the request of tribal partners, who wished to see the items reunited with the ancestors they were buried with before their repatriation. Those funerary items made up about 40% of the exhibit.

State museum officials told ProPublica they’re not sure how many museums in Illinois still display funerary items. The law applies to every museum, university and historical society in the state — far more than the 15 institutions in Illinois that have reported their Native American holdings under the NAGPRA.

When asked about what he would say to museums that may push back against the law, Illinois State Rep. Mark L. Walker said: “Too bad.”

Walker, a Democrat who represents part of Chicago’s northwest suburbs, sponsored the legislation. He said he’s already received interest from other states looking to adopt similar laws.

“I think we can be a model for other states,” Walker said. “Whether we can change [Illinois’] image to such an extent that these communities actually trust us? I don’t know. That may take 30 years.”

ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.

Schlittler leads Rockets in home win over Indians

Unity's Jillian Schlittler does a back set while teammate Meagan Rothe moves into position to attempt a kill in the Rockets' road match at St. Joseph-Ogden. Tonight, Schlittler, a sophomore, led UHS' offensive effort for a conference win over visiting Pontiac, 2-0.
Photo: PhotoNews/Clark Brooks

TOLONO - Bouncing back from a two-match slide, the Unity volleyball team defeated Pontiac at the Rocket Center on Thursday, 2-0.

Sophomore Jillian Schlittler tallied a team-high eight kills and recorded two blocks to help Unity (14-16-1) move one step closer to a .500 season.

Chloey Duitsman and Lauren Shaw collected seven digs apiece. Duitsman also served up a couple of aces, while Shaw dispersed 13 assists.

Unity took the first set 25-21 and dominated the floor in their second set effort with a decisive 25-14 victory.

The Rockets will face three opponents in the final week of the regular season, starting with the Urbana Tigers (3-11) on Monday. Twenty-four hours later, Duitsman, Schlittler & Shaw will have home-court advantage again, hosting Rantoul Township (13-19, 2-5) in their squad's last conference match of the season. Unity's regular-season finale will be played on the road in a non-conference at Olympia (13-16) on Thursday.


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New Medicare Advantage now tailoring to Asian Americans, Latinos, and LGBTQ+ needs

by Stephanie Stephens
Kaiser Health News

As Medicare Advantage continues to gain popularity among seniors, three Southern California companies are pioneering new types of plans that target cultural and ethnic communities with special offerings and native-language practitioners.

Clever Care Health Plan, based in Huntington Beach, and Alignment Health, based in nearby Orange, both have plans aimed at Asian Americans, with extra benefits including coverage for Eastern medicines and treatments such as cupping and tui na massage. Alignment also has an offering targeting Latinos, while Long Beach-based SCAN Health Plan has a product aimed at the LGBTQ+ community. All of them have launched since 2020.


Asian Americans may want coverage for traditional Eastern treatments, while LGBTQ+ patients might be especially concerned with HIV prevention or management

While many Medicare Advantage providers target various communities with their advertising, this trio of companies appear to be among the first in the nation to create plans with provider networks and benefits designed for specific cultural cohorts. Medicare Advantage is typically cheaper than traditional Medicare but generally requires patients to use in-network providers.

“This fits me better,” said Clever Care member Tam Pham, 78, a Vietnamese American from Westminster, California. Speaking to KFF Health News via an interpreter, she said she appreciates the dental care and herbal supplement benefits included in her plan, and especially the access to a Vietnamese-speaking doctor.

“I can always get help when I call, without an interpreter,” she said.

Proponents of these new culturally targeted plans say they can offer not only trusted providers who understand their patients’ unique context and speak their language, but also special products and services designed for their needs. Asian Americans may want coverage for traditional Eastern treatments, while LGBTQ+ patients might be especially concerned with HIV prevention or management, for example.

Health policy researchers note that Medicare Advantage tends to be lucrative for insurers but can be a mixed bag for patients, who often have a limited choice of providers — and that targeted plans would not necessarily solve that problem. Some also worry that the approach could end up being a new vector for discrimination.

“It’s strange to think about commodifying and profiting off people’s racial and ethnic identities,” said Naomi Zewde, an assistant professor at the UCLA Fielding School of Public Health. “We should do so with care and proceed carefully, so as not to be exploitive.”

Still, there’s plenty of evidence that patients can benefit from care that is targeted to their race, ethnicity, or sexual orientation.

A November 2020 study of almost 118,000 patient surveys, published in JAMA Network Open, underscored the need for a connection between physician and patient, finding that patients with the same racial or ethnic background as their physicians are more likely to rate the latter highly. A 2022 survey of 11,500 people around the world by the pharmaceutical company Sanofi showed a legacy of distrust in health care systems among marginalized groups, such as ethnic minorities, LGBTQ+ people, and people with disabilities.

Clever Care, founded by Korean American health care executive Myong Lee, aimed from the start to create Medicare Advantage plans for underserved Asian communities, said Peter Winston, the senior vice president and general manager of community and provider development at the company. “When we started enrollments, we realized there is no one ‘Asian,’ but there is Korean, Chinese, Vietnamese, Filipino, and Japanese,” Winston added.

The company has separate customer service lines by language and gives members flexibility on how and where to spend their allowances for benefits like fitness programs.

Winston said the plan began with 500 members in January 2021 and is now up to 14,000 (still very small compared with mainstream plans). Herbal supplement benefit dollars vary by plan, but more than 200 products traditionally used by Asian clients are on offer, with coverage of up to several hundred dollars per quarter.

Sachin Jain, a physician and the CEO of SCAN Group, said its LGBTQ+ plan serves 600 members.

“This is a group of people who, for much of their lives, lived in the shadows,” Jain added. “There is an opportunity for us as a company to help affirm them, to provide them with a special set of benefits that address unmet needs.”


Alignment also has an offering aimed at Latinos, dubbed el Único, in parts of Arizona, Nevada, Texas, Florida, and California.

SCAN has run into bias issues itself, with some of its employees posting hate speech and one longtime provider refusing to participate in the plan, Jain recounted.

Alignment Health offers a plan targeting Asian Americans in six California counties, with benefits such as traditional wellness services, a grocery allowance for Asian stores, nonemergency medical transportation, and even pet care in the event a member has a hospital procedure or emergency and needs to be away from home.

Alignment also has an offering aimed at Latinos, dubbed el Único, in parts of Arizona, Nevada, Texas, Florida, and California. The California product, an HMO co-branded with Rite Aid, is available in six counties, while in Florida and Nevada, it’s a so-called special needs plan for Medicare beneficiaries who also qualify for Medicaid. All offer a Spanish-speaking provider network.

Todd Macaluso, the chief growth officer for Alignment, declined to share specific numbers but said California membership in Harmony — its plan tailored to Asian Americans — and el Único together has grown 80% year over year since 2021.

Alignment’s marketing efforts, which include visiting places where prospective members may shop or socialize, are about more than just signing up customers, Macaluso said.

“Being present there means we can see what works, what’s needed, and build it out. The Medicare-eligible population in Fresno looks very different from one in Ventura.”

“Just having materials in the same language is important, as is identifying the caller and routing them properly,” Macaluso added.

Blacks, Latinos, and Asians overall are significantly more likely than white beneficiaries to choose Medicare Advantage plans, according to recent research conducted for Better Medicare Alliance, a nonprofit funded by health insurers. (Latino people can be of any race or combination of races.) But it’s not clear to what extent that will translate into the growth of targeted networks: Big insurers’ Medicare Advantage marketing efforts often target specific racial or ethnic cohorts, but the plans don’t usually include any special features for those groups.

Utibe Essien, an assistant professor of medicine at UCLA, noted the historical underserving of the Black community, and that the shortage of Black physicians could make it hard to build a targeted offering for that population. Similarly, many parts of the country don’t have a high enough concentration of specific groups to support a dedicated network.

Still, all three companies are optimistic about expansion among groups that haven’t always been treated well by the health care system. “If you treat them with respect, and bring care to them the way they expect it, they will come,” Winston said.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.


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