NEW YORK - Advocates for end-of-life care options have written a letter asking the federal Health and Human Services Secretary to reverse a waiver of a federal law that requires patients to be informed of their right to refuse treatment.

The Centers for Medicare and Medicaid Services issued the waiver last week.

According to Kim Callinan, president and CEO of the organization Compassion & Choices, research shows that when given the option, about 80% of seriously ill patients will refuse invasive medical procedures. But with the waiver in effect, fewer people will be asked.

"It's going to make health-care providers ration care for their patients rather than empowering patients to make decisions," says Callinan, "and allowing their decisions to be paramount in end-of-life planning."

She strongly recommends that everyone fill out the state form specifying advance directives for end-of-life care. The forms are available online at compassionandchoices.org.

Corrine Carey is senior campaign director for Compassion & Choices in New York and New Jersey. A few days ago, both she and her husband tested positive for COVID-19.

She says that has raised the level of discussion about end-of-life planning in her household.

"For myself, for my family, it's really important that you know what your loved ones want," says Carey, "and what level of care you want should you be facing a health-care crisis."

To accommodate social-distancing restrictions, Gov. Andrew Cuomo has signed an executive order easing regulations for documents including end-of-life directives.

Callinan notes that the letter sent to HHS Secretary Alex Azar this week encourages him and Congress to take actions that will benefit both patients and health-care providers.

"Reinstate the Patient Self-Determination Act requirement," says Callinan, "and instead, take some very specific actions that will result in much more widespread adoption of advance-care planning."

She contends that advance directives give providers much-needed guidance, especially when hospital resources are strained by a health crisis such as the COVID-19 pandemic.


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The Alaska branch of the American Heart Association is helping save lives by teaching the use of cardiopulmonary resuscitation and automated external defibrillators in rural communities.

In a medical emergency, such as a heart attack, time and distance can be a formidable obstacle in rural Alaska for getting a patient to a hospital. The association said only about 10% of people who suffer a cardiac arrest outside a hospital will survive but access to CPR or a defibrillator can triple those odds.

Kristin George, executive director of the American Heart Association of Alaska, said it is all about keeping the blood flowing.

"The benefit of having CPR and AED education is restarting the heart," George explained. "If we can keep the blood flowing to the heart, then we're not losing any of the parts we need. The reason we do the education is to continue to keep that heart beating."

George noted by 2030, the association plans to visit more than 220 rural Alaskan villages. Each visit will include a hands-only CPR and AED skills session led by a LifeMed Alaska expert. Each town will get a CPR Anytime Training Kit, so residents can practice their skills and teach others.

George pointed out the goal is to increase the number of residents in Alaska's rural communities trained to provide chest compressions or apply an external defibrillator to restart a heart. She emphasized many remote villages in Alaska are detached from the state's road system, meaning it can take a long time for medical help to arrive.

"Any village that's out on the coast or anything like that is going to be pretty much unable to get there without a plane," George observed. "Or if you wanted to take the longest trek of your life and do it sled dog or by snow machine."

George added the Association has set a goal of doubling the survival rate from cardiac arrests in Alaska by 2030. The Foss Family Foundation and LifeMed Alaska are sponsoring the rural Alaska effort.

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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