Today is National Healthcare Decisions Day, and New Yorkers have reason to start early planning.

A new report cites rates of Alzheimer's disease growing among the state's 65+ population, with a projected 460,000 older New Yorkers being diagnosed with Alzheimer's by 2025.

Corinne Carey, senior New York campaign director for Compassion & Choices, feels the best first step for health care planning is exploring a person's values. She said many questions should be considered during the planning process.

"Is it important for you to be free from pain at all costs?" Carey outlined. "Is it important for you to be treated the way you want? Is it important to you to know how your body will change? Is it important that you not be connected to machines?"

One way to help people get started is Compassion & Choices' Dementia Values and Priorities tool. It is designed to help people document their health care wishes before developing dementia or an illness affecting their decision-making abilities.

Experts advise people to revisit and update their plans every five to 10 years, rather than chuck them aside in the filing cabinet.

Some people delay health care planning because they feel it is hard to have such conversations.

Jessica Empeño, national director of clinical engagement and education for Compassion & Choices, said not having a person's wishes creates numerous challenges.

"There is a much higher risk for receiving treatments that may not be beneficial, that could be burdensome, and could be really expensive," Empeño pointed out. "Copays and things like that are not inexpensive for people."

She added if a person moves or travels a lot, they should have more than one advanced directive.

One challenge in planning can be the options a person has, such as considering certain surgeries and understanding the side effects of different treatments. Empeño noted having a professional sit down and review the options can help people feel less overwhelmed in health care planning.

By Lauren Cohen / Broadcast version by Farah Siddiqi reporting for the Kent State NewsLab-Ohio News Connection Collaboration.

When Derek Calkins woke up in the hospital in January 2021, he couldn’t see or move.

He didn’t have his glasses and his legs and arms weren’t working, he recounted. With tubes coming out of his body and a ventilator in his neck, he couldn’t talk, and he couldn’t discern what was real and what wasn’t.

“I was scared,” Calkins said. “I didn’t know what was going on. No one was coming in.”

He later learned that after a successful planned surgery on Dec. 1, 2020, he aspirated fluid into his lungs and had to have an emergency surgery. Although it was successful, Calkins’ oxygen levels were still low. Then he tested positive for COVID-19 and was moved to the intensive care unit at another hospital.

As it was the height of the COVID-19 pandemic, that hospital had implemented a no-visitor policy. Calkins said he was incredibly disoriented, going in and out of consciousness due to pain medications, and craving human contact — but couldn’t have someone there in person to advocate for him.

Legislation that took effect last month would prevent others from experiencing what Calkins did, proponents say.

“Never Alone Act” prohibits denial of a patient advocate during public health emergencies

The “Never Alone Act,” or H.B. 236, was introduced by Ohio State Reps. Melanie Miller (R-City of Ashland) and Beth Lear (R-Galena) and signed into law by Gov. Mike DeWine in December. It went into effect March 20.

The bill passed in the Ohio House of Representatives with a unanimous vote of 89-0. It “prohibits a congregate care setting from denying a patient or resident access to an advocate during public health emergencies.” 

Miller said in a press release that her awareness of the need for patient rights protection inspired her to sponsor the bill. Neither sponsor returned requests for comment.

Susan Wallace, president of the nonprofit trade group LeadingAge Ohio, which represents roughly 375 aging service operators in Ohio, said her organization created the first draft of the protocol when they brought families back together in visitation during the pandemic.

“There was a concern from a number of groups, including the sponsor lawmakers,” Wallace said. “They wanted to make sure that never happens again, that kind of separation. So, they drafted this bill.”

Preventing isolation

The Ohio Laws & Administrative Rules Legislative Service Commission has a bill of rights for nursing home and residential care facility residents. It includes the right to private visits at any reasonable hour and unrestricted communications with a resident’s family.

Wallace said the new law will add an extra layer of protection for patient rights, though it won’t have a day-to-day impact because emergency pandemic orders are not in effect anymore.

“Having connections to loved ones is always important,” she said. “Our nursing facilities are not cut off from the world, they're nested within the communities, and they are extensions of the family, and so anything that we can do to preserve those connections is really important.”

Physical and mental consequences of isolation

Calkins said the isolation he experienced in the ICU took a major toll on him.

Eventually, he said his wife was allowed one-hour visits, and when he was transferred to a long-term care facility in early February, she was able to come once per week.

“I had a little clock by the TV,” Calkins said. “I would seriously stare at the clock waiting for that one hour she could come in. It was bad.”

After being moved to a rehab unit, his wife could visit daily.

“One day, she took my kids in front of the hospital, and I could see them through the window,” he said. “Both my girls were crying because they couldn’t visit me, but at least they saw me.”

Mary Malek, a Twinsburg-based clinical psychologist who specializes in medical trauma, said visitation restrictions took a toll on healthcare workers as well as patients.

“The collateral damage of this… no one is unaffected,” Malek said. “You’re trained to save lives. You’re trained to go in to be able to do your job … and it came at a high cost.”

She said she had experience with emergency medical technicians, first responders and physicians who lost their jobs or were threatened with their medical licenses for going against the mandate. In the future, she said she hopes people will be better protected.

In addition to his social isolation, Calkins said because he wasn’t shifted in his bed as often as he needed to be, he developed multiple bed sores. His legs and arms wouldn’t work properly since they were left in one position for so long.

He believes if his wife had been allowed to be there, she would have advocated for him to be taken care of properly. He said H.B. 236 gives him hope that nobody else will have to go through what he went through.

“Having someone there and being able to talk to them and being able to describe to you what’s going on, that helps tremendously,” he said. “You’re no longer alone.”


This collaboration is produced in association with Media in the Public Interest and funded in part by the George Gund Foundation.


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Law enforcement officers and drug prevention advocates in Missouri are joining forces to tackle prescription drug misuse.

As part of the Drug Enforcement Administration's "National Prescription Drug Take Back Day," five collection sites will be set up across Taney and Stone counties on April 26.

Data from two years ago showed around 190,000 Missourians misused opioids, including 180,000 who misused prescription pain relievers.

Marietta Hagan, project coordinator at Cox Health, warned prescription drug misuse contributes heavily to opioid use disorder.

"People would get prescription medication that didn't belong to them as easy as walking into their parent's medicine cabinet and pulling it out of there, or pulling it out of the side night table at bedtime," Hagan explained.

Volunteers will be at the sites offering free safety tips and disposal kits, making it easy for families to clear out their medicine cabinets.

Hagan emphasized "Drug Take Back Day" is about more than just safe disposal. It is also a reminder to store medications properly to prevent misuse. She shared guidance on how to safely get rid of unwanted medications.

"Previously government agencies had encouraged actually the flushing of medications," Hagan noted. "But we now know thanks to environmental science, that is not recommended. Those medications end up in our water supply, in our lakes and our streams."

Most prescription and over-the-counter medications will be accepted, including pills, patches, and vapes without batteries. National Prescription Drug Take Back Day is held twice a year, typically in April and October.


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A Tennessee nonprofit is warning that potential Medicaid cuts could threaten crucial support for the state's nearly 1 million family caregivers.

Medicaid supports 4.5 million individuals through home health-care services nationwide.

Megan Schwalm, president and CEO of the Tennessee Caregiver Coalition, said more than half of its funding comes from the now-dismantled Administration for Community Living - which has been folded into the Department of Health and Human Services.

Schwalm said federal funding cuts have affected the coalition, which provides respite services for people caring for loved ones with dementia or other serious conditions.

"Our state typically reimburses at $23.44 an hour for respite, and so us being able to provide at about $5 an hour is a huge cost savings," said Schwalm. "But with those cuts to Medicaid and the Administration for Community Living, we won't be able to provide those services any longer."

She said the funding cuts have already forced the loss of a staff position and nearly all outreach efforts for respite services across Tennessee.

Medicaid is jointly funded by states and the federal government, but Congress is proposing cutting Medicaid spending by $880 billion over 10 years.

According to AARP, Tennessee already ranks poorly among states for its lack of supports and services for caregivers and people with disabilities.

Schwalm acknowledged that Medicaid could benefit from reform, but she said dismantling it without a clear, comprehensive plan would be detrimental to the people of Tennessee.

"These cuts to Medicaid are coming, but there is no safety net in place," said Schwalm. "There is no alternative. And so it is very unclear what will happen to these folks in these programs."

She emphasized the importance of Tennesseans letting their elected officials know how they feel about safeguarding these safety net programs.




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