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Yesterday, our president-elect met with a noted vaccine skeptic. Trump and his team have been mulling the privatization of the Veterans Health Administration. Republican congress members are eagerly anticipating their repeal of the Affordable Care Act, even though most Americans say they don’t support a repeal without a replacement.

 

“We can’t sleepwalk through this one, Darlings.”

 

That’s Joanna Macy, longtime peace and environmental activist, scholar of Buddhism and systems theory, and translator of the poet Rilke whose work, since November 9, has been my light and my salvation. Macy made that remark in an inspiring 20-minute talk she gave at the Bioneers conference in 2014. She shows in this speech how Rilke’s words are inextricable from her philosophy:

I am so grateful to be alive now. For life to continue, that means . . . we have to make a giant step in our consciousness. We have to make real what we dream and know and intuit. That we are one-planet people and we can only be one-planet people if we honor all our differences. . . . Rilke said:

Quiet friend who has come so far,
feel how your breathing makes more space around you.
Let this darkness be a bell tower
and you the bell. As you ring,

what batters you becomes your strength.

I’ve written at this blog, over the past several years, on the power of poetry to inform health care practice and policy. But we are entering a new political era, one that may force a further dissolving of many rigid old divisions—the arts from science, environmental activism from health care advocacy, research from clinical practice.

 

For this, we need poetry. Why? Because we have to make a giant step in our consciousness. Because we have to make real what we dream. Because we can’t sleepwalk through this one, Darlings.

 

Last November MacArthur fellow Claudia Rankine published a poem she had written a year before the passage of the ACA, called The Health of Us. The poem creates community from its first word, “We.” Rankine’s incantatory rhythm reminds us of the hope inspired by the mere thought of health care for all:

                                                         we understood
the impossibility of real equality but this single shift
toward a national community we thought
despite being founded on genocide and sustained by slavery
in God’s country we thought we were ready
to see sanity inside the humanity

Of the many challenges ahead, perhaps our greatest will be preserving that sight. How will we maintain our ability to see, and help one another to see, what Rankine so brilliantly calls “sanity inside the humanity”?

 

I wrote in 2015 that what poetry has to offer health care and health policy is its “reporting on the human beings at the heart of a vast and sometimes spiritless industry.”

 

But Rilke says it better. His sonnet, which Macy quotes from in her speech, continues:

Move back and forth into the change.
What is it like, such intensity of pain?
If the drink is bitter, turn yourself to wine.

Yesterday, our president-elect met with a noted

credit: eflon (creative commons)

The recent death of movie star Debbie Reynolds just a day after her daughter, actress Carrie Fisher, died from a heart attack, focused attention on a condition known as broken heart syndrome.

 

It’s a real medical affliction, called stress-induced cardiomyopathy or takotsubo cardiomyopathy. And it can strike even healthy people. It’s physical symptoms mimic a heart attack, without the clogged arteries or long term effects; most people who experience this recover, but some do not.

 

So while it’s it’s possible that the stroke Reynolds suffered could have been brought on by the stress of extreme grief, we don’t know for sure.

 

What we do know is that grief is a unique process for every individual. There’s no “one way” or “right way” to do it, according to Amy Florian, MA, a fellow in thanatology. It’s is a sub-specialty of psychology that focuses on dying, death and bereavement. Florian never planned for a career helping others who grieve. But at age 25, with a seven-month old son, she was consumed by overwhelming grief after her husband was killed in a car crash.

 

Grief is not linear, it’s a roller coaster, she told me. “We do heal from it but we never totally close the door.”

 

There were few resources in her small Iowa town to help Florian cope, so she began keeping a journal. After sharing portions of her writing during a grief seminar several years later, she began speaking in front of audiences about her personal journey through the process – eventually returning to school to further her study in this field. Now, she travels widely to educate those who help others cope with grief, including clergy, hospice staff and volunteers, social workers, financial professionals and even funeral home directors.

 

Different approaches to grief

There are generally two different styles of grieving. Men tend to be instrumental grievers. They experience grief more in their head than their heart. They focus on little things, facts and statistics, and want to take action. They want to know what they can do to get through the grief. And if they talk, Florian said, it’s also more likely to be one-on-one than in a support group.

 

Most women tend toward an intuitive style of grieving, which comes more from their heart than their head. They tend to focus on a bigger picture and emotions. Unlike many men, they want to gather people around and talk.

Intuitive grievers are more likely to go to a support group than an individual grief coach or counselor.

 

“But like any personality characteristic, we’re all in a continuum somewhere,” Florian said. “It’s rarely 100 percent either way.”

 

Everyone grieves in their own way – some cry, some want to act, some want to cocoon. And it can change from day to day or even hour to hour. Family, friends, and colleagues can best help by supporting that person in that moment, regardless of gender.

 

Many people are at a loss and don’t know what to say besides “I’m sorry.” Rather, Florian suggested, let the person know, “I’m here for you, I have a shoulder waiting for you.” Tell them you want to help, and offer to run errands, clean the house, or take them out to lunch. Ask what would be most helpful for them instead of posing a general “what can I do,” question, because grieving people have difficulty thinking straight.

 

Florian also suggests:

  • be willing to sit with them.
  • ask good open-ended questions and really listen. Questions to ask instead of “How are you” could include things like “What kind of a day is it today? Is this an up day, a down day, or an all-over-the-place day?
  • listen, listen and listen – just let them talk
  • be willing to let them cry; it’s an emotional release.
  • reach out, especially on tough days.

 

Notice and acknowledge important days, like a birthday, wedding anniversary, or the anniversary of the death. On those days, just be there, she said. “It can make all the difference in the world for that person.”

 

You don’t get “over it,” that’s a myth, she added. You assimilate the loss into your life and you learn from it. You use it to build something that doesn’t exist yet and go into a future that is enriched by the memories.

 

As for broken heart syndrome, the intricate link between the psychological and physical is well documented. While there are accounts of long-married couples who have died within days or even hours of one another, it’s the exception rather than the rule. But sometimes, Florian said, grief becomes so overwhelming that the will to live is simply gone.

 

You can listen to the full conversation with Florian on HealthCetera radio on Thursday, January 12, 2017 on WBAI-FM at 1pm, ET or click below.

 

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This story was reported by CHMP Media Fellow Melissa Patrick and first appeared on the Kentucky Health News website.

 

BEATTYVILLE, Ky. – Fannie Callahan, a 62-year-old woman from Lee County, worked at the local nursing home for 38 years before retiring, has insurance, and pays her bills on time. But a six-day hospital stay in 2013 left her thousands of dollars in debt and wondering how to pay it and also cover her basic needs – until a co-worker told her about Kentucky Homeplace.

 

Samantha Bowman, CHW

Samantha Bowman, a community health worker at Homeplace, said she was able to call Fannie’s bill collectors and get the debts written off or reduced, then helped her create a payment plan within her budget.

 

“I was in distress and really didn’t know which way to turn,” Callahan said. “I don’t know what I would do without Kentucky Homeplace.”

 

For more than 20 years, Kentucky Homeplace has used community health workers to get thousands of Kentuckians the services they need. Most of its clients are either at or near the poverty level, but the program is free to anyone in the 30 Eastern Kentucky counties it serves.

 

CHWs aren’t medically trained, but come from the communities they serve and are trained patient advocates who help coordinate their clients’ care, provide access to medical, social and environmental services, and deliver education on prevention and disease self- management.

 

Homeplace is part of the University of Kentucky‘s Center of Excellence in Rural Health. CERH Director Fran Feltner said preventive screening rates are higher for Homeplace clients than state and national averages “because the CHWs really work with them to make sure they get screened.”

 

The mammogram rate is 89 percent, far above the state’s 58 percent and the nation’s 60 percent.

 

Bowman said the greatest needs for her clients are medical, and she often helps them get medical supplies.

Counties served by Kentucky Homeplace are in blue

 

“We see those working-poor individuals or even middle-income individuals that come in here that
have tried other avenues without success,” she said. “They are working 40, 50, 60 hours a week, but the income is not enough for them to be able to afford to access the care they need, whether it’s glasses, dentures, hearing aides, medications, or even diabetic shoes — they can’t afford to get them.”

 

Bowman said she also helps her clients become better health consumers, noting that many leave their doctor’s office without a real understanding of their diagnosis or what they need to do about it.

 

“The majority of them can’t work through the medical system, it’s too difficult. They don’t understand, most of the time, even the medications they take,” Bowman said.

 

“So Homeplace makes a huge difference in looking at the person as a whole and starting from that beginning screening to know what the person really needs. Is it that they need food? Is it that they need shelter? And then when you get those goals met, then you can talk to them about preventive care,” Feltner said. “The success is that holistic approach that we take to take care of the people.”

 

CHW and similar programs vary across the state

The Montgomery County Health Department’s CHW program, called “The Bridge” (or “El Puente” for Latino clients) is clinic-based and focuses on chronic-disease management.

Gina Brien, director of the agency’s Community Department, said surveys of clients show that they are more able to manage their at-risk or chronic conditions, have better health status and have reduced emergency-room visits and overnight hospital stays.

 

The Barren River District Health Department uses CHWs and registered nurses in a “self-management program” and only accepts clients who have heart failure, diabetes and chronic obstructive pulmonary disease.

 

Cara Castleberry, manager of the Community Health Management Program, said one of its program’s many successes in the past year has been an average drop of 2.15 percent in their patients’ A1C, a test for blood sugar.

 

The Mountain Comprehensive Health Corp. in Whitesburg uses registered nurses as quality care managers to coordinate care and improve patients’ health behaviors. The program requires patients to have two chronic health conditions and is covered by Medicaid. Care managers provide many of the same services as CHWs, but are also able to manage their patients’ health conditions.

 

“We’ve seen A1Cs go down. We’ve seen patients who never come in for preventive exams who have come in for preventives. I had a patient who hadn’t had a pap[smear for cervical cancer] in 15 years . . . and she was just too scared to talk to somebody about the fact that she was afraid that she couldn’t step up on that bed,” said manager Chalena Williams.

 

Most CHW programs in Kentucky are rural, but the Louisville Urban League recently launched a CHW program, “It Starts with Me,” in four neighborhoods in west Louisville, which have some of the greatest health disparities in the city.

 

“What we are finding with many of our clients is that there is a gap between what a medical provider — or really any type of organization that they are interfacing with — is asking them to do and then what they are understanding,” said Lyndon Pryor, the league’s health program manager.

 

Pryor said providers think they are being straightforward about recommending medications, but fail to realize patients don’t know how to get them through their insurance, or don’t have transportation to get to the pharmacy, or that work conflicts keep them from complying with the instructions.

 

“CHWs are able to sift through all of the different nuances of a person’s life and figure out how to get to the best solution possible for the individual,” Pryor said.

 

The future of CHWs in Kentucky

CHWs are becoming an integral part of a health system that is increasingly focused on outcomes and the social determinants of health.

 

Kentucky’s CHW Workgroup, led by the state Department for Public Health, and the state’s Community Health Worker Association are working on a certification process for CHWs, in hopes of increasing funding options, which would allow the program to expand.

 

Insurance rarely covers CHW services. Kentucky’s CHW programs are funded by various sources, including the state’s general fund, grants and local taxes.

 

Brien, a member of the workgroup, said it started meeting in 2012 and made progress, but last year’s change in administrations has required them to educate the new health officials. Nationally, a formal task force is working on a framework for sustainable, effective CHW programs.

 

The Bureau of Labor Statistics says Kentucky had between 390 and 560 CHWs in May 2015, the latest data available. Nationally, there were about 48,000.

 

Feltner said Kentucky needs more CHW programs because there are areas all over the state with great health disparities that would benefit from them: “If you don’t remove those barriers and those social determinants of health, you have a sick population.”

 

 

This article was produced as part of the Health Care Workforce Media Fellowship, run by the Center for Health, Media & Policy, New York, N.Y. The fellowship is supported by a grant from the Johnson & Johnson Foundation. Kentucky Health News is an independent news service of the Institute for Rural Journalism and Community Issues, based in the School of Journalism and Media at the University of Kentucky, with support from the Foundation for a Healthy Kentucky.

This story was reported by CHMP Media Fellow