CHICAGO -- Alzheimer's disease is the sixth leading cause of death in Illinois, and groups advocating for end-of-life planning say now is the time to start having conversations about your or your loved one's wishes for care in the event of a diagnosis.

The group Compassion and Choices has a "Dementia Values and Priorities" toolkit which lays out a step-by-step process for someone to map out their wishes for different stages of the disease.

Amy Sherman, regional campaign and outreach manager for Compassion and Choices Illinois, said it is designed to empower people, so they can effectively communicate and advocate for the treatment they want.

"I think it's a gift to yourself," Sherman explained. "But it's also a gift to your loved one who are going to be responsible for your well-being and for making difficult care decisions as Alzheimer's disease or dementia progresses."

She pointed out the instructions generated by the Dementia Values and Priorities toolkit can supplement an Advanced Directive, which names a health-care proxy, or someone who will make decisions for someone else's care in the event they cannot.

Daryl Isenberg is an Illinois resident whose mother went through a difficult end-of-life process with Alzheimer's, and when her husband was later diagnosed, they documented his wishes for what level of care he would get at certain stages of the illness.

Isenberg said he made it clear he did not want to prolong the dying process with dementia, and she added having those conversations took the weight off for both of them.

"That became documented," Isenberg remarked. "And in his case, he was able to go through several years with minimal amounts of treatment and had a pleasant experience with the last years of his life."

Kelly Rice oversees an Aging Services Program in Illinois, and said she learned how important it is to have those conversations, especially when her father was diagnosed with Alzheimer's.

She recounted even though they carefully documented his wishes, it was a struggle to make sure they were respected in the health-care setting. But she added knowing what your loved one wants makes a big difference.

"Once you have it kind of set, it also allows you to release that and then just be able to really focus on your relationship with that person and spending time with them, as opposed to kind of feeling anxious or having that unknown piece in the back of your mind," Rice emphasized.

Health-care advocates say more than 1 million North Carolinians could lose access to health care if the promises made in Project 2025 are carried out. Project 2025 is a 900-page "playbook" written by the conservative Heritage Foundation for a complete makeover of the federal government if Republicans win a governing majority in the next election.

DonnaMarie Woodson, a longtime Charlotte-based health-care advocate and political activist who lobbied Congress to create the ACA, said Project 2025 would be a disaster for both low-income families and all Americans.

"Project 2025 is a vision of a world, a country that nobody wants to live in. It's all about control, because if we can't agree on human life being valuable, then there's no place else for us to go," she said.

Project 2025 calls for a takeover of most government agencies, changing the way they operate to conservative principles and staffing them with right-wing ideologues. It would make some independent agencies directly responsible to the president, and close altogether others such as the Department of Education and the EPA.

Woodson said programs such as the ACA and the Inflation Reduction Act relieved many North Carolinians, including her and her husband, from regularly deciding whether to pay monthly bills or get health care. Woodson is a two-time cancer survivor and her husband is an insulin-dependent diabetic. The state's adoption of the ACA Medicaid expansion was a lifeline, she said.

"It was like 600,000 people signed up for Medicaid, which was supposed to be a part of the Affordable Care Act, but there were states that did not accept the free money that was coming to the state because of politics," said Woodson.

Woodson added Project 2025 goes far beyond just reshaping the government and would turn daily life in America into a "dystopian nightmare."

"Who wants to live like that? You don't really even hear the word service working with the government. Senator this, Representative that, but they're all supposed to be servants of the people. That was the whole point of having the United States -- so all of us would be united as a community," she continued.


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Shopping for health-care procedures has historically been more challenging than getting the best deal on groceries or even car repairs.

But Cari Frank, vice president for communications with the Center for Improving Value in Health Care, said you can now compare prices for more than 250 procedures - from having a baby to imaging services and getting a hip replacement - across 150 hospitals and other care facilities across the state, through the group's updated Shop for Care Tool.

"You can shop for what facilities might be the lowest cost and the highest quality around you. So, you can really save thousands and thousands of dollars by using this tool," she explained.

The tool taps data from the Colorado All Payer Claims Database, which shows that commercial insurance companies have paid between $270 and $2,000 for a single cardiovascular stress test. An ultrasound of the heart can cost between $700 and $4,000. The tool is online at CIVHC.org.

Because quality is not always synonymous with cost in the health-care sector, the tool now ranks factors including a facility's success rate in positive health outcomes, and whether or not their services meet national guidelines.

"And then there is also a quality measure that's the patient experience. So it's, 'How does a patient feel like they were treated when they were there? Did the doctors respect them? Were they given good discharge information?' Both of those scores are available on our tool," she continued.

Frank hopes the tool will help bring down health costs by making prices more transparent and giving consumers options. She adds if you're getting a knee replacement, for example, it's important to consider the procedure's overall price tag, not just out-of-pocket costs.

"Even if you are only going to have to pay $500 out of pocket, that $60,000 total price tag does get factored into your premium setting the next year, which means that prices might rise for you overall," she added.

Starting in January, medical debt will no longer count against millions of Californians' credit scores thanks to a bill signed Tuesday by Gov. Gavin Newsom.

Senate Bill 1061 will ban almost all medical debt from showing up on people's credit reports.

Jenn Engstrom, state director for the nonprofit California Public Interest Research Group, which backed the bill, explained the importance of the legislation.

"Medical debt really does not belong on credit reports," Engstrom contended. "Unlike other types of debt, medical expenses are not something that consumers can control, you know, you might get into a car accident, or all of a sudden you have cancer, and have these expenses."

The bill faced initial opposition from lenders, who secured an amendment to exclude debt from specialty medical credit cards and debt for cosmetic procedures not medically necessary. The new law goes into effect in January.

Engstrom estimated one in five Californians has unpaid medical debt, which she argued saddles them in ways that go far beyond just having to pay it.

"When medical debt ends up on your credit report, that makes it more challenging to apply for a credit card or a loan, or get a house and even some employment," Engstrom outlined. "That's why it's really important that California is now moving towards a fairer credit system."

In June, the Consumer Financial Protection Bureau proposed a similar rule to keep most medical debt off credit reports nationwide. It would stop credit reporting companies from sharing medical debts with lenders and forbid lenders from making decisions based on medical information.


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