Medical boards pressured to let it slide when doctors spread COVID misinformation

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Wed, 02/16/2022 - 14:28

Tennessee’s Board of Medical Examiners unanimously adopted in September 2021 a statement that said doctors spreading COVID misinformation – such as suggesting that vaccines contain microchips – could jeopardize their license to practice.

“I’m very glad that we’re taking this step,” Dr. Stephen Loyd, MD, the panel’s vice president, said at the time. “If you’re spreading this willful misinformation, for me it’s going to be really hard to do anything other than put you on probation or take your license for a year. There has to be a message sent for this. It’s not okay.”

The board’s statement was posted on a government website.

But before any physicians could be reprimanded for spreading falsehoods about COVID-19 vaccines or treatments, Republican lawmakers threatened to disband the medical board.

The growing tension in Tennessee between conservative lawmakers and the state’s medical board may be the most prominent example in the country. But the Federation of State Medical Boards, which created the language adopted by at least 15 state boards, is tracking legislation introduced by Republicans in at least 14 states that would restrict a medical board’s authority to discipline doctors for their advice on COVID.

Humayun Chaudhry, DO, the federation’s CEO, called it “an unwelcome trend.” The nonprofit association, based in Euless, Tex., said the statement is merely a COVID-specific restatement of an existing rule: that doctors who engage in behavior that puts patients at risk could face disciplinary action.

Although doctors have leeway to decide which treatments to provide, the medical boards that oversee them have broad authority over licensing. Often, doctors are investigated for violating guidelines on prescribing high-powered drugs. But physicians are sometimes punished for other “unprofessional conduct.” In 2013, Tennessee’s board fined U.S. Rep. Scott DesJarlais for separately having sexual relations with two female patients more than a decade earlier.

Still, stopping doctors from sharing unsound medical advice has proved challenging. Even defining misinformation has been difficult. And during the pandemic, resistance from some state legislatures is complicating the effort.

A relatively small group of physicians peddle COVID misinformation, but many of them associate with America’s Frontline Doctors. Its founder, Simone Gold, MD, has claimed patients are dying from COVID treatments, not the virus itself. Sherri Tenpenny, DO, said in a legislative hearing in Ohio that the COVID vaccine could magnetize patients. Stella Immanuel, MD, has pushed hydroxychloroquine as a COVID cure in Texas, although clinical trials showed that it had no benefit. None of them agreed to requests for comment.

The Texas Medical Board fined Dr. Immanuel $500 for not informing a patient of the risks associated with using hydroxychloroquine as an off-label COVID treatment.

 

 


In Tennessee, state lawmakers called a special legislative session in October to address COVID restrictions, and Republican Gov. Bill Lee signed a sweeping package of bills that push back against pandemic rules. One included language directed at the medical board’s recent COVID policy statement, making it more difficult for the panel to investigate complaints about physicians’ advice on COVID vaccines or treatments.

In November, Republican state Rep. John Ragan sent the medical board a letter demanding that the statement be deleted from the state’s website. Rep. Ragan leads a legislative panel that had raised the prospect of defunding the state’s health department over its promotion of COVID vaccines to teens.

Among his demands, Rep. Ragan listed 20 questions he wanted the medical board to answer in writing, including why the misinformation “policy” was proposed nearly two years into the pandemic, which scholars would determine what constitutes misinformation, and how was the “policy” not an infringement on the doctor-patient relationship.

“If you fail to act promptly, your organization will be required to appear before the Joint Government Operations Committee to explain your inaction,” Rep. Ragan wrote in the letter, obtained by Kaiser Health News and Nashville Public Radio.

In response to a request for comment, Rep. Ragan said that “any executive agency, including Board of Medical Examiners, that refuses to follow the law is subject to dissolution.”

He set a deadline of Dec. 7.

In Florida, a Republican-sponsored bill making its way through the state legislature proposes to ban medical boards from revoking or threatening to revoke doctors’ licenses for what they say unless “direct physical harm” of a patient occurred. If the publicized complaint can’t be proved, the board could owe a doctor up to $1.5 million in damages.

Although Florida’s medical board has not adopted the Federation of State Medical Boards’ COVID misinformation statement, the panel has considered misinformation complaints against physicians, including the state’s surgeon general, Joseph Ladapo, MD, PhD.

Dr. Chaudhry said he’s surprised just how many COVID-related complaints are being filed across the country. Often, boards do not publicize investigations before a violation of ethics or standards is confirmed. But in response to a survey by the federation in late 2021, two-thirds of state boards reported an increase in misinformation complaints. And the federation said 12 boards had taken action against a licensed physician.

“At the end of the day, if a physician who is licensed engages in activity that causes harm, the state medical boards are the ones that historically have been set up to look into the situation and make a judgment about what happened or didn’t happen,” Dr. Chaudhry said. “And if you start to chip away at that, it becomes a slippery slope.”

The Georgia Composite Medical Board adopted a version of the federation’s misinformation guidance in early November and has been receiving 10-20 complaints each month, said Debi Dalton, MD, the chairperson. Two months in, no one had been sanctioned.

Dr. Dalton said that even putting out a misinformation policy leaves some “gray” area. Generally, physicians are expected to follow the “consensus,” rather than “the newest information that pops up on social media,” she said.

“We expect physicians to think ethically, professionally, and with the safety of patients in mind,” Dr. Dalton said.

A few physician groups are resisting attempts to root out misinformation, including the Association of American Physicians and Surgeons, known for its stands against government regulation.

Some medical boards have opted against taking a public stand against misinformation.

The Alabama Board of Medical Examiners discussed signing on to the federation’s statement, according to the minutes from an October meeting. But after debating the potential legal ramifications in a private executive session, the board opted not to act.

In Tennessee, the Board of Medical Examiners met on the day Rep. Ragan had set as the deadline and voted to remove the misinformation statement from its website to avoid being called into a legislative hearing. But then, in late January, the board decided to stick with the policy – although it did not republish the statement online immediately – and more specifically defined misinformation, calling it “content that is false, inaccurate or misleading, even if spread unintentionally.”

Board members acknowledged they would likely get more pushback from lawmakers but said they wanted to protect their profession from interference.

“Doctors who are putting forth good evidence-based medicine deserve the protection of this board so they can actually say: ‘Hey, I’m in line with this guideline, and this is a source of truth,’” said Melanie Blake, MD, the board’s president. “We should be a source of truth.”

The medical board was looking into nearly 30 open complaints related to COVID when its misinformation statement came down from its website. As of early February, no Tennessee physician had faced disciplinary action.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation. This story is part of a partnership that includes Nashville Public Radio, NPR, and KHN.

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Tennessee’s Board of Medical Examiners unanimously adopted in September 2021 a statement that said doctors spreading COVID misinformation – such as suggesting that vaccines contain microchips – could jeopardize their license to practice.

“I’m very glad that we’re taking this step,” Dr. Stephen Loyd, MD, the panel’s vice president, said at the time. “If you’re spreading this willful misinformation, for me it’s going to be really hard to do anything other than put you on probation or take your license for a year. There has to be a message sent for this. It’s not okay.”

The board’s statement was posted on a government website.

But before any physicians could be reprimanded for spreading falsehoods about COVID-19 vaccines or treatments, Republican lawmakers threatened to disband the medical board.

The growing tension in Tennessee between conservative lawmakers and the state’s medical board may be the most prominent example in the country. But the Federation of State Medical Boards, which created the language adopted by at least 15 state boards, is tracking legislation introduced by Republicans in at least 14 states that would restrict a medical board’s authority to discipline doctors for their advice on COVID.

Humayun Chaudhry, DO, the federation’s CEO, called it “an unwelcome trend.” The nonprofit association, based in Euless, Tex., said the statement is merely a COVID-specific restatement of an existing rule: that doctors who engage in behavior that puts patients at risk could face disciplinary action.

Although doctors have leeway to decide which treatments to provide, the medical boards that oversee them have broad authority over licensing. Often, doctors are investigated for violating guidelines on prescribing high-powered drugs. But physicians are sometimes punished for other “unprofessional conduct.” In 2013, Tennessee’s board fined U.S. Rep. Scott DesJarlais for separately having sexual relations with two female patients more than a decade earlier.

Still, stopping doctors from sharing unsound medical advice has proved challenging. Even defining misinformation has been difficult. And during the pandemic, resistance from some state legislatures is complicating the effort.

A relatively small group of physicians peddle COVID misinformation, but many of them associate with America’s Frontline Doctors. Its founder, Simone Gold, MD, has claimed patients are dying from COVID treatments, not the virus itself. Sherri Tenpenny, DO, said in a legislative hearing in Ohio that the COVID vaccine could magnetize patients. Stella Immanuel, MD, has pushed hydroxychloroquine as a COVID cure in Texas, although clinical trials showed that it had no benefit. None of them agreed to requests for comment.

The Texas Medical Board fined Dr. Immanuel $500 for not informing a patient of the risks associated with using hydroxychloroquine as an off-label COVID treatment.

 

 


In Tennessee, state lawmakers called a special legislative session in October to address COVID restrictions, and Republican Gov. Bill Lee signed a sweeping package of bills that push back against pandemic rules. One included language directed at the medical board’s recent COVID policy statement, making it more difficult for the panel to investigate complaints about physicians’ advice on COVID vaccines or treatments.

In November, Republican state Rep. John Ragan sent the medical board a letter demanding that the statement be deleted from the state’s website. Rep. Ragan leads a legislative panel that had raised the prospect of defunding the state’s health department over its promotion of COVID vaccines to teens.

Among his demands, Rep. Ragan listed 20 questions he wanted the medical board to answer in writing, including why the misinformation “policy” was proposed nearly two years into the pandemic, which scholars would determine what constitutes misinformation, and how was the “policy” not an infringement on the doctor-patient relationship.

“If you fail to act promptly, your organization will be required to appear before the Joint Government Operations Committee to explain your inaction,” Rep. Ragan wrote in the letter, obtained by Kaiser Health News and Nashville Public Radio.

In response to a request for comment, Rep. Ragan said that “any executive agency, including Board of Medical Examiners, that refuses to follow the law is subject to dissolution.”

He set a deadline of Dec. 7.

In Florida, a Republican-sponsored bill making its way through the state legislature proposes to ban medical boards from revoking or threatening to revoke doctors’ licenses for what they say unless “direct physical harm” of a patient occurred. If the publicized complaint can’t be proved, the board could owe a doctor up to $1.5 million in damages.

Although Florida’s medical board has not adopted the Federation of State Medical Boards’ COVID misinformation statement, the panel has considered misinformation complaints against physicians, including the state’s surgeon general, Joseph Ladapo, MD, PhD.

Dr. Chaudhry said he’s surprised just how many COVID-related complaints are being filed across the country. Often, boards do not publicize investigations before a violation of ethics or standards is confirmed. But in response to a survey by the federation in late 2021, two-thirds of state boards reported an increase in misinformation complaints. And the federation said 12 boards had taken action against a licensed physician.

“At the end of the day, if a physician who is licensed engages in activity that causes harm, the state medical boards are the ones that historically have been set up to look into the situation and make a judgment about what happened or didn’t happen,” Dr. Chaudhry said. “And if you start to chip away at that, it becomes a slippery slope.”

The Georgia Composite Medical Board adopted a version of the federation’s misinformation guidance in early November and has been receiving 10-20 complaints each month, said Debi Dalton, MD, the chairperson. Two months in, no one had been sanctioned.

Dr. Dalton said that even putting out a misinformation policy leaves some “gray” area. Generally, physicians are expected to follow the “consensus,” rather than “the newest information that pops up on social media,” she said.

“We expect physicians to think ethically, professionally, and with the safety of patients in mind,” Dr. Dalton said.

A few physician groups are resisting attempts to root out misinformation, including the Association of American Physicians and Surgeons, known for its stands against government regulation.

Some medical boards have opted against taking a public stand against misinformation.

The Alabama Board of Medical Examiners discussed signing on to the federation’s statement, according to the minutes from an October meeting. But after debating the potential legal ramifications in a private executive session, the board opted not to act.

In Tennessee, the Board of Medical Examiners met on the day Rep. Ragan had set as the deadline and voted to remove the misinformation statement from its website to avoid being called into a legislative hearing. But then, in late January, the board decided to stick with the policy – although it did not republish the statement online immediately – and more specifically defined misinformation, calling it “content that is false, inaccurate or misleading, even if spread unintentionally.”

Board members acknowledged they would likely get more pushback from lawmakers but said they wanted to protect their profession from interference.

“Doctors who are putting forth good evidence-based medicine deserve the protection of this board so they can actually say: ‘Hey, I’m in line with this guideline, and this is a source of truth,’” said Melanie Blake, MD, the board’s president. “We should be a source of truth.”

The medical board was looking into nearly 30 open complaints related to COVID when its misinformation statement came down from its website. As of early February, no Tennessee physician had faced disciplinary action.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation. This story is part of a partnership that includes Nashville Public Radio, NPR, and KHN.

Tennessee’s Board of Medical Examiners unanimously adopted in September 2021 a statement that said doctors spreading COVID misinformation – such as suggesting that vaccines contain microchips – could jeopardize their license to practice.

“I’m very glad that we’re taking this step,” Dr. Stephen Loyd, MD, the panel’s vice president, said at the time. “If you’re spreading this willful misinformation, for me it’s going to be really hard to do anything other than put you on probation or take your license for a year. There has to be a message sent for this. It’s not okay.”

The board’s statement was posted on a government website.

But before any physicians could be reprimanded for spreading falsehoods about COVID-19 vaccines or treatments, Republican lawmakers threatened to disband the medical board.

The growing tension in Tennessee between conservative lawmakers and the state’s medical board may be the most prominent example in the country. But the Federation of State Medical Boards, which created the language adopted by at least 15 state boards, is tracking legislation introduced by Republicans in at least 14 states that would restrict a medical board’s authority to discipline doctors for their advice on COVID.

Humayun Chaudhry, DO, the federation’s CEO, called it “an unwelcome trend.” The nonprofit association, based in Euless, Tex., said the statement is merely a COVID-specific restatement of an existing rule: that doctors who engage in behavior that puts patients at risk could face disciplinary action.

Although doctors have leeway to decide which treatments to provide, the medical boards that oversee them have broad authority over licensing. Often, doctors are investigated for violating guidelines on prescribing high-powered drugs. But physicians are sometimes punished for other “unprofessional conduct.” In 2013, Tennessee’s board fined U.S. Rep. Scott DesJarlais for separately having sexual relations with two female patients more than a decade earlier.

Still, stopping doctors from sharing unsound medical advice has proved challenging. Even defining misinformation has been difficult. And during the pandemic, resistance from some state legislatures is complicating the effort.

A relatively small group of physicians peddle COVID misinformation, but many of them associate with America’s Frontline Doctors. Its founder, Simone Gold, MD, has claimed patients are dying from COVID treatments, not the virus itself. Sherri Tenpenny, DO, said in a legislative hearing in Ohio that the COVID vaccine could magnetize patients. Stella Immanuel, MD, has pushed hydroxychloroquine as a COVID cure in Texas, although clinical trials showed that it had no benefit. None of them agreed to requests for comment.

The Texas Medical Board fined Dr. Immanuel $500 for not informing a patient of the risks associated with using hydroxychloroquine as an off-label COVID treatment.

 

 


In Tennessee, state lawmakers called a special legislative session in October to address COVID restrictions, and Republican Gov. Bill Lee signed a sweeping package of bills that push back against pandemic rules. One included language directed at the medical board’s recent COVID policy statement, making it more difficult for the panel to investigate complaints about physicians’ advice on COVID vaccines or treatments.

In November, Republican state Rep. John Ragan sent the medical board a letter demanding that the statement be deleted from the state’s website. Rep. Ragan leads a legislative panel that had raised the prospect of defunding the state’s health department over its promotion of COVID vaccines to teens.

Among his demands, Rep. Ragan listed 20 questions he wanted the medical board to answer in writing, including why the misinformation “policy” was proposed nearly two years into the pandemic, which scholars would determine what constitutes misinformation, and how was the “policy” not an infringement on the doctor-patient relationship.

“If you fail to act promptly, your organization will be required to appear before the Joint Government Operations Committee to explain your inaction,” Rep. Ragan wrote in the letter, obtained by Kaiser Health News and Nashville Public Radio.

In response to a request for comment, Rep. Ragan said that “any executive agency, including Board of Medical Examiners, that refuses to follow the law is subject to dissolution.”

He set a deadline of Dec. 7.

In Florida, a Republican-sponsored bill making its way through the state legislature proposes to ban medical boards from revoking or threatening to revoke doctors’ licenses for what they say unless “direct physical harm” of a patient occurred. If the publicized complaint can’t be proved, the board could owe a doctor up to $1.5 million in damages.

Although Florida’s medical board has not adopted the Federation of State Medical Boards’ COVID misinformation statement, the panel has considered misinformation complaints against physicians, including the state’s surgeon general, Joseph Ladapo, MD, PhD.

Dr. Chaudhry said he’s surprised just how many COVID-related complaints are being filed across the country. Often, boards do not publicize investigations before a violation of ethics or standards is confirmed. But in response to a survey by the federation in late 2021, two-thirds of state boards reported an increase in misinformation complaints. And the federation said 12 boards had taken action against a licensed physician.

“At the end of the day, if a physician who is licensed engages in activity that causes harm, the state medical boards are the ones that historically have been set up to look into the situation and make a judgment about what happened or didn’t happen,” Dr. Chaudhry said. “And if you start to chip away at that, it becomes a slippery slope.”

The Georgia Composite Medical Board adopted a version of the federation’s misinformation guidance in early November and has been receiving 10-20 complaints each month, said Debi Dalton, MD, the chairperson. Two months in, no one had been sanctioned.

Dr. Dalton said that even putting out a misinformation policy leaves some “gray” area. Generally, physicians are expected to follow the “consensus,” rather than “the newest information that pops up on social media,” she said.

“We expect physicians to think ethically, professionally, and with the safety of patients in mind,” Dr. Dalton said.

A few physician groups are resisting attempts to root out misinformation, including the Association of American Physicians and Surgeons, known for its stands against government regulation.

Some medical boards have opted against taking a public stand against misinformation.

The Alabama Board of Medical Examiners discussed signing on to the federation’s statement, according to the minutes from an October meeting. But after debating the potential legal ramifications in a private executive session, the board opted not to act.

In Tennessee, the Board of Medical Examiners met on the day Rep. Ragan had set as the deadline and voted to remove the misinformation statement from its website to avoid being called into a legislative hearing. But then, in late January, the board decided to stick with the policy – although it did not republish the statement online immediately – and more specifically defined misinformation, calling it “content that is false, inaccurate or misleading, even if spread unintentionally.”

Board members acknowledged they would likely get more pushback from lawmakers but said they wanted to protect their profession from interference.

“Doctors who are putting forth good evidence-based medicine deserve the protection of this board so they can actually say: ‘Hey, I’m in line with this guideline, and this is a source of truth,’” said Melanie Blake, MD, the board’s president. “We should be a source of truth.”

The medical board was looking into nearly 30 open complaints related to COVID when its misinformation statement came down from its website. As of early February, no Tennessee physician had faced disciplinary action.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation. This story is part of a partnership that includes Nashville Public Radio, NPR, and KHN.

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Black-owned hospice seeks to bring greater ease in dying to Black families

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Tue, 01/11/2022 - 09:22

This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. So when her husband, Willie, neared the end of his life, she embraced hospice again.

The Murphys’ house in a leafy Nashville, Tenn., neighborhood is their happy place – full of their treasures.

“He’s good to me – buys me anything I want,” she said, as she pulled a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off the trinkets she picks up at estate sales.

Down the hall, Willie was lying in their bed, now unable to speak. His heart was giving out.

“You gonna wake up for a minute?” she asked, cradling his head. She patted his back while he cleared his throat. “Cough it out.”

Mary had been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville focused on increasing the use of end-of-life comfort care by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they aim to serve.

In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear they are Black and intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data shows that in Nashville just 19% of hospice patients are Black, although they make up 27% of the capital city’s population.

Though the area already had numerous hospice agencies, regulators granted Heart and Soul permission to operate, based primarily on the value of educating an underserved group.

In Ms. Murphy’s first hospice experience, her mother had been living with dementia for decades. Still, Ms. Murphy had concerns about transitioning her mother to hospice. She felt as if she was giving up on her mom.

“My first thought was death,” she said.

National data shows that Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with 54% of White patients, according to data compiled annually by the National Hospice and Palliative Care Organization.

Ms. Murphy’s mother survived nearly 3 years on hospice. The benefit is meant for those in the final 6 months of life, but predicting when the end will come is difficult, especially in cases of dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Ms. Murphy did most of the caregiving – which can be overwhelming – but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Ms. Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she said about the day her mother died.

Last year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like: ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” said Keisha Mason, Heart and Soul’s director of nursing.

Ms. Mason, like Ms. Murphy, is Black and said that in her view there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients – paid for by Medicare, Medicaid, and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,’” she said.

As Ms. Mason helped launch this new hospice agency, she began using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she said.

The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit; Nashville pastor the Rev. Sandy McClain; and André Lee, a former hospital administrator on the campus of Meharry Medical College, a historically Black institution in Nashville.

Mr. Lee and Mr. Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.

More families need to consider home hospice as an alternative for end-of-life care, Mr. Lee said. Nursing homes are pricey. And even with Medicare, a hospital bill can be hefty.

“You’ll go in there and they’ll eat you alive,” he said. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons to explain the gap between White and Black families’ use of the benefit. Some experts speculate it’s related to spiritual beliefs and widespread mistrust in the medical system because of decades of discrimination.

The hospice industry’s national trade group, the National Hospice and Palliative Care Organization, released a diversity and inclusion toolkit and a guide to reaching more Black patients. It recommends connecting with influential DJs, partnering with Black pastors and simply hiring more Black nurses.

Bridging the gap is not overly complicated, Mr. Lee said.

“A lot of hospices don’t employ enough Black people,” he said. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have attempted to minimize barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York said her large agency has met with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she said. “They had many of the same sort of misperceptions.”

Every hospice company, whether it’s an upstart or one of the nation’s oldest, can promote end-of-life education and ease care disparities, Ms. Drayton said. “We’re not just handing out a brochure,” she added.

This story is part of a partnership that includes Nashville Public RadioNPR, and KHN. KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. So when her husband, Willie, neared the end of his life, she embraced hospice again.

The Murphys’ house in a leafy Nashville, Tenn., neighborhood is their happy place – full of their treasures.

“He’s good to me – buys me anything I want,” she said, as she pulled a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off the trinkets she picks up at estate sales.

Down the hall, Willie was lying in their bed, now unable to speak. His heart was giving out.

“You gonna wake up for a minute?” she asked, cradling his head. She patted his back while he cleared his throat. “Cough it out.”

Mary had been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville focused on increasing the use of end-of-life comfort care by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they aim to serve.

In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear they are Black and intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data shows that in Nashville just 19% of hospice patients are Black, although they make up 27% of the capital city’s population.

Though the area already had numerous hospice agencies, regulators granted Heart and Soul permission to operate, based primarily on the value of educating an underserved group.

In Ms. Murphy’s first hospice experience, her mother had been living with dementia for decades. Still, Ms. Murphy had concerns about transitioning her mother to hospice. She felt as if she was giving up on her mom.

“My first thought was death,” she said.

National data shows that Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with 54% of White patients, according to data compiled annually by the National Hospice and Palliative Care Organization.

Ms. Murphy’s mother survived nearly 3 years on hospice. The benefit is meant for those in the final 6 months of life, but predicting when the end will come is difficult, especially in cases of dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Ms. Murphy did most of the caregiving – which can be overwhelming – but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Ms. Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she said about the day her mother died.

Last year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like: ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” said Keisha Mason, Heart and Soul’s director of nursing.

Ms. Mason, like Ms. Murphy, is Black and said that in her view there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients – paid for by Medicare, Medicaid, and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,’” she said.

As Ms. Mason helped launch this new hospice agency, she began using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she said.

The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit; Nashville pastor the Rev. Sandy McClain; and André Lee, a former hospital administrator on the campus of Meharry Medical College, a historically Black institution in Nashville.

Mr. Lee and Mr. Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.

More families need to consider home hospice as an alternative for end-of-life care, Mr. Lee said. Nursing homes are pricey. And even with Medicare, a hospital bill can be hefty.

“You’ll go in there and they’ll eat you alive,” he said. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons to explain the gap between White and Black families’ use of the benefit. Some experts speculate it’s related to spiritual beliefs and widespread mistrust in the medical system because of decades of discrimination.

The hospice industry’s national trade group, the National Hospice and Palliative Care Organization, released a diversity and inclusion toolkit and a guide to reaching more Black patients. It recommends connecting with influential DJs, partnering with Black pastors and simply hiring more Black nurses.

Bridging the gap is not overly complicated, Mr. Lee said.

“A lot of hospices don’t employ enough Black people,” he said. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have attempted to minimize barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York said her large agency has met with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she said. “They had many of the same sort of misperceptions.”

Every hospice company, whether it’s an upstart or one of the nation’s oldest, can promote end-of-life education and ease care disparities, Ms. Drayton said. “We’re not just handing out a brochure,” she added.

This story is part of a partnership that includes Nashville Public RadioNPR, and KHN. KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. So when her husband, Willie, neared the end of his life, she embraced hospice again.

The Murphys’ house in a leafy Nashville, Tenn., neighborhood is their happy place – full of their treasures.

“He’s good to me – buys me anything I want,” she said, as she pulled a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off the trinkets she picks up at estate sales.

Down the hall, Willie was lying in their bed, now unable to speak. His heart was giving out.

“You gonna wake up for a minute?” she asked, cradling his head. She patted his back while he cleared his throat. “Cough it out.”

Mary had been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville focused on increasing the use of end-of-life comfort care by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they aim to serve.

In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear they are Black and intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data shows that in Nashville just 19% of hospice patients are Black, although they make up 27% of the capital city’s population.

Though the area already had numerous hospice agencies, regulators granted Heart and Soul permission to operate, based primarily on the value of educating an underserved group.

In Ms. Murphy’s first hospice experience, her mother had been living with dementia for decades. Still, Ms. Murphy had concerns about transitioning her mother to hospice. She felt as if she was giving up on her mom.

“My first thought was death,” she said.

National data shows that Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with 54% of White patients, according to data compiled annually by the National Hospice and Palliative Care Organization.

Ms. Murphy’s mother survived nearly 3 years on hospice. The benefit is meant for those in the final 6 months of life, but predicting when the end will come is difficult, especially in cases of dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Ms. Murphy did most of the caregiving – which can be overwhelming – but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Ms. Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she said about the day her mother died.

Last year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like: ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” said Keisha Mason, Heart and Soul’s director of nursing.

Ms. Mason, like Ms. Murphy, is Black and said that in her view there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients – paid for by Medicare, Medicaid, and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,’” she said.

As Ms. Mason helped launch this new hospice agency, she began using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she said.

The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit; Nashville pastor the Rev. Sandy McClain; and André Lee, a former hospital administrator on the campus of Meharry Medical College, a historically Black institution in Nashville.

Mr. Lee and Mr. Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.

More families need to consider home hospice as an alternative for end-of-life care, Mr. Lee said. Nursing homes are pricey. And even with Medicare, a hospital bill can be hefty.

“You’ll go in there and they’ll eat you alive,” he said. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons to explain the gap between White and Black families’ use of the benefit. Some experts speculate it’s related to spiritual beliefs and widespread mistrust in the medical system because of decades of discrimination.

The hospice industry’s national trade group, the National Hospice and Palliative Care Organization, released a diversity and inclusion toolkit and a guide to reaching more Black patients. It recommends connecting with influential DJs, partnering with Black pastors and simply hiring more Black nurses.

Bridging the gap is not overly complicated, Mr. Lee said.

“A lot of hospices don’t employ enough Black people,” he said. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have attempted to minimize barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York said her large agency has met with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she said. “They had many of the same sort of misperceptions.”

Every hospice company, whether it’s an upstart or one of the nation’s oldest, can promote end-of-life education and ease care disparities, Ms. Drayton said. “We’re not just handing out a brochure,” she added.

This story is part of a partnership that includes Nashville Public RadioNPR, and KHN. KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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