1 month ago

Community members train doctors on culturally appropriate palliative care

Four palliative care doctors, two researchers and several community members gathered in Beaufort, South Carolina, in late August to gain insight into the history and culture of two rural Southern communities, White and African American, and to understand the cultural values and preferences of each of these two ethnic groups in caring for patients with serious illness.

Culture shapes how people make meaning out of illness, suffering and dying, and it influences their responses to diagnosis, prognosis and treatment preferences. Lack of respect for cultural differences may compromise care for seriously ill minority patients. However, culturally appropriate models of palliative care are not currently available.

Until now, there was no such thing as culturally based protocol for patients with serious illness or for end of life care, until this team of community members developed one for rural southern African Americans and another for Whites,” said Ronit Elk, Ph.D., a researcher in the Division of Gerontology, Geriatrics and Palliative Care at the University of Alabama at Birmingham.

For three and a half years, Elk and her colleagues worked with teams of White and African American community advisory board members to create this culturally based protocol. It was determined after focus groups held with community members who had been a caregiver to a loved one who had recently died.

“I started with the focus group six weeks after my husband passed away,” said Jonnie Grant, a member of the group. “I was a newly widowed person who was not knowing where to go or what to do.”

Gardenia Simmons-White, a member of the community advisory board, said working with the advisory group and learning of each other’s beliefs helped them create the protocol and form a mutual respect for each other’s cultures.

“When you take care of people, you care for people of all different nationalities and beliefs. You have to understand that everyone has different beliefs,” Simmons-White said. “You have to understand that everyone’s culture is different, and it is especially true of how African Americans and Caucasians react to end of life diagnoses. We need to know each other’s cultures in order to ask questions and not have stereotypical beliefs. And we need to understand our history in order to have respect.”

This unusual gathering was part of a training program conducted by the community members to prepare the palliative care physicians for a randomized clinical trial in which the efficacy of this community-developed and culturally based protocol will be tested. This trial, funded by the National Institutes of Health and co-led by Elk and Marie Bakitas, DNSc, of the UAB School of Nursing, will compare the culturally based palliative care consult program provided through telehealth, in addition to regular care. They will compare the findings to patients receiving regular care to see if it helps reduce patient suffering, increases the quality of life for the patient and family, and reduces the burden of care for caregivers.

The study began patient recruitment in January and will take place in three rural hospitals in Alabama, Mississippi and South Carolina.

The training program

The training program by the community members of the four palliative care physicians, Rodney Tucker, M.D., and Susan McCammon, M.D., from UAB, Josh Hauser, M.D., from Northwestern University in Chicago, and Jacob Graham, M.D., from Forrest General Hospital in Hattiesburg, Mississippi, included an in-depth review by the community advisory board members of the ethnic-group specific protocol, with an explanation of the cultural values underlying each of these.

“When you talk about life-threatening issues, it is good to include the pastor in the conversation,” said Pastor Michael Williams, a community advisory board member, referring to African American patients. “It’s because of faith, because of prayer and the pastor being there, that things will get better.”

Role play, a commonly used teaching strategy, was also a part of the training program. But this time, it was the community members who critiqued the physicians, telling them how they felt after they were spoken to about their goals of care conversations, or one about a serious and/or terminal prognosis.

“Patients and their families are really our most generous teachers. We think of ourselves as teachers, but when I think of the work that I get to do as a doctor, it is the patient and the family members that do the teaching,” Hauser said. “I always tell my residents and fellows that the most important teachers we have are the patients, the caregivers and people like you on the community advisory group.”

Visiting historic sites

In addition to the training program, the group visited two historic sites in South Carolina, each of which had an important historical meaning to each ethnic group. Old Sheldon Church Ruins, a famous red-stone church, twice burned down, the first time during the Civil War. Now a relic, it sits among green lawns and palm trees, with a scattering of 50 graves, some of which were used as an operating table during that war.

The next stop was to the Penn Center on Saint Helena’s Island, the site of the nation’s first school for formerly enslaved people. Simmons-White led the tour, and the group learned that it was the first school in the South for freed slaves and the center’s role in the civil rights movement.

“Our history was not written into the history books,” Simmons-White explained. “We need to know the significance of what we brought to our culture here. It is always good to know each other’s history because then you can respect them more.”

These visits provided meaningful insight for the clinicians, too.

“I can say visiting the Penn Center has continued to open my eyes to the cultural journey of the individuals for which I care for,” Tucker said. “It is important for me to understand their history, to understand their values, and their lived experience as we move forward with their care.”

“It would be too easy to focus on the nuts and bolts of the training for the protocol itself, but I think going to the Sheldon Church and the Penn Center, was incredibly rich, but the richness extends to the fact that you and this group acknowledge how important that historical context is,” McCammon said. “Everything we are doing now grew out of that history – the good and the bad and what we need to do today to make it better and better serve our patients.”

Impressions of the training

The physicians’ time and respect were the most meaningful part of the experience to several of the community members.

“I think it was important for the physicians to see how the local members of the community advisory group have embraced the concept of palliative care and that all as former caregivers, they had a personal experience of dealing with a very ill loved one,” said Cynthia Coburn-Smith, one of the community advisory group members. “It was wonderful to see the physicians get involved in role playing in the retreat. We went over the cultural training protocol we developed with Dr. Elk with the physicians, and we answered their questions on why these issues were important to us.”

One concern was unrealized by one of the members.

“One of my fears was that the doctors were going to come in with their attitudes, and they didn’t,” Grant said. “I hope that your memories, and I know that mine, will be cherished and, hopefully, we will be able to continue this relationship that we started and be able to do this in the future.”

To the doctors, it was just as worthwhile.

“It is validating for the things that we know, and how we can improve. You started it, and we will continue the next steps,” Tucker said. “If we gather together in another 10 years, I hope there are thousands of physicians outside of us that begin to realize culturally appropriate conversations are so important and not just for end of life or serious illness, but from the very start.”

“We’ve been at it for so many years,” Elk said. “When I think about how everybody came to all of the meetings, everybody still has their books, everyone has been committed to it through all of these years writing the protocol. For me, what we’ve accomplished is beyond a fantasy.”

This story originally appeared on the University of Alabama at Birmingham’s UAB News website.

(Courtesy of Alabama NewsCenter)

12 hours ago

OK, it’s time to start talking about opening up Alabama’s economy

The irresponsibility of the media, national public health officials and China has effectively destroyed our economy, individual businesses and American lives.

It is time to look for the exit ramp.

On March 14, Ramsey Archibald, son of John Archibald, was responsible for a completely ridiculous piece of video that rightly scared the heck out of many Alabamians.

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Archibald helped push the message that 2.5 million Alabamians would get the coronavirus, adding, “Let’s be conservative and say 50% get COVID-19.”

But wait, there’s more.

The video also makes the following claims:

  • 500,000 will need to be treated at a hospital.
  • 125,000 will need treatment at an intensive care unit.
  • 25,000 people could die

The Alabama Media Group “data reporter” painted this projection of millions getting sick and 25,000 dead as the best-case scenario.

He — and his publication — got it wrong. Big time.

But it worked. In concert with other lunatics, they declared that Alabama Governor Kay Ivey wanted people to die, or was at least cool with it, if she didn’t declare Alabama to be a “shelter-in-place” state.

After all, they just heard of such a thing and the smart states were doing it, so the dummies in Alabama should do it as well.

I, for my part, saw this for what it was and pointed out that at some point the governor’s office would cave and make the order, so she should just do it.

That’s exactly what happened.

The numbers began to change.

March 14 — 25,000
March 31 — 1,700
April 1 — 7,300+
April 2 — 5,500+
April 5 — 923
April 8 — 634

Now, this other info came from the Institute for Health Metrics and Evaluation projections.

Archibald’s info? A CBS News piece and a calculator. The projection went from 25,000 to 634 in less than a month.

The national line moved from 2.2 million to 60,000+ in that same time frame.

But the storyline didn’t reflect that change.

“People will die!” after all.

It won’t change now either.

It’s time to acknowledge that Alabama should be figuring out how to get back open for business.

Here is my suggestion how:

  1. Social distancing continues until August 1
  2. All businesses, outside of bars, restaurants and sporting events, can open on May 1
  3. Bars, restaurants and sporting events can open on May 15 with half occupancy
  4. Everything can fully open up on June 1
  5. Dates can change based on data

Why these dates?

Why not? Archibald based his on less.

The other steps we took were based on incorrect information and a guess.

Nations in Europe are doing similar things, and I thought people wanted us to be like Europe.

Give Alabamians some hope. Let them know there is a light at the end of the tunnel. Be optimistic, but safe. Be smart, but understand that people are suffering here.

Jobs and businesses are already lost, unemployment is through the roof. It’s time to show the people of Alabama that there was a reason for that.

Dale Jackson is a contributing writer to Yellowhammer News and hosts a talk show from 7-11 am weekdays on WVNN.

12 hours ago

Yellowhammer connects your business to Alabama consumers

After nine years, our mission remains the same: reflect our state, its people and their values. As the state’s second-largest media outlet, Yellowhammer connects your business to the people of Alabama.

Online, on the radio, podcasts, events and more. What can Yellowhammer do for you?

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12 hours ago

Ainsworth encourages Alabamians to ‘Ring for the Resurrection’ on Easter

Lt. Governor Will Ainsworth is asking all Alabamians to join him in a “Ring for the Resurrection” campaign on Easter Sunday. The effort is intended to promote unity at this COVID-19 time of prolonged separation and to celebrate the resurrection of Jesus Christ following his crucifixion.

Ring for the Resurrection, which was created by Ainsworth, calls for all churches and individuals across the Yellowhammer State to ring a bell at noon on Sunday, April 12, in joint celebration of the holiday.

“Social distancing guidelines require us to remain apart from our extended families, church members, and other individuals on a sacred religious holiday that normally encourages us to gather together,” Ainsworth said in a statement on Wednesday. “But I realized that the simple act of ringing a bell can allow us to remain physically distant while being united in spirit.”

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“My wife, Kendall, our twin boys, Hunter and Hays, and our daughter, Addie, will be among those ringing a bell at noon on Sunday to celebrate the miracle of Easter,” he concluded. “While Gov. Ivey’s stay-at-home order, the public’s health and safety, and simple common sense prevent Christians from gathering in large groups even on the holiest of days, all of us can join together in spirit as we ring a bell to recognize that Christ has risen.”

This comes after Ainsworth earlier this week unveiled a new website designed to provide small business owners with a one-stop online information hub related to the ongoing pandemic.

RELATED: Ivey announces campaign encouraging Alabamians to pray for medical personnel, first responders

Sean Ross is the editor of Yellowhammer News. You can follow him on Twitter @sean_yhn

13 hours ago

COVID-19 restrictions unfairly choke small business

When Mark and Susan Anderson were required by a statewide mandate to close the doors of their Dothan clothing and outdoor gear store, Eagle Eye Outfitters, they felt like it was a necessary sacrifice for the good of public health. By limiting retail shopping to essential items such as groceries, prescriptions, and fuel, the governor’s order takes a great many people off the streets.

Hopefully, it slows the spread of the rampant COVID-19 virus. But the closure is incredibly painful for owners like them: it has forced them to furlough more than 150 employees, and the massive loss of revenue will leave a mark on their business for years.

What the Andersons don’t understand was how it is fair for one of their local competitors, the national chain Academy Sports and Outdoors, to continue selling the same types of apparel and outdoor gear.

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In this case, the loophole for Academy is their small firearms counter. Guns and ammunition are considered essential under the current order. Therefore, Academy and others who carry firearms have been allowed to continue to do business — even if guns and ammunition are only a small percentage of their overall sales.

One of the unintended consequences of the mandate is that small businesses, which often specialize in a more narrow range of merchandise, are penalized more heavily than their national chain competitors.

You heard that right: businesses owned and operated by Alabamians are absorbing the crushing cost of total closure, while national chains based out of state continue to snatch up what little retail demand still exists in the downturn.

If all businesses operating in Alabama were restricted from selling non-essential goods, small businesses might at least expect to benefit from the pent-up economic demand that will exist once the mandate is lifted. As it is, demand for those goods and services is funneled immediately to the big chains, cutting small business owners out of the deal entirely.

Bob Couch of Couch’s Jewelers feels that his small business is paying a higher price than others, as well. While he is forced to shutter his 75-year-old family jewelry store in downtown Anniston, Wal-Mart is allowed to continue selling jewelry just a short distance away. Because they carry groceries and have a pharmacy, they are allowed to sell anything.

None of the small business owners I spoke with this week felt the retail sales restrictions were unnecessary, given the scope and seriousness of the pandemic. But they think the state government has picked winners and losers with a poorly-conceived order.

They are right. And the governor can correct it today if she chooses.

Vermont heard a similar outcry from its small business community. In response, it amended its closure order so that businesses that remain open to offer essentials are limited to just those sales. In a large department store that offers a variety of goods, selling non-essentials is temporarily prohibited. No more going to Wal-Mart for groceries, but then wandering the aisles looking for a pair of gold earrings or a sleeping bag.

These are trying times for businesses of every size. But there’s no good reason for our own state government to damage Alabama’s small business owners further.

None of us likes the loss of civil liberties, or the freedom to do business as we choose — not even for a day. But if our current public health concerns are so extraordinary as to require such restrictions, the least government can do is ensure that they be equally and fairly applied. Every business operating in this state — big box or main street — should bear its share of the burden.

Dana Hall McCain, a widely published writer on faith, culture, and politics, is Resident Fellow of the Alabama Policy Institute; reach her on Twitter at @dhmccain.

API is an independent, nonpartisan, nonprofit research and educational organization dedicated to free markets, limited government, and strong families, learn more at alabamapolicy.org.

14 hours ago

Alabama community colleges donate medical supplies to those fighting COVID-19

Community colleges across Alabama, many of which house nursing programs, are donating their medical equipment to those on the front lines of the fight against the coronavirus.

According to a release from the Alabama Community College System (ACCS), many campuses across Alabama have equipment for their “simulated healthcare settings” where students train for medical careers.

“We are grateful for the daily sacrifice of Alabama’s healthcare providers and are grateful we can do our part to help serve our communities during the COVID-19 pandemic,” said Jimmy Baker, chancellor of the ACCS.

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The equipment donated includes much sought-after ventilators that can help treat the most serious coronavirus cases.

The community colleges also handed out their supply of Personal Protective Equipment like masks to cover the face to local hospitals.

“Much like our efforts to meet the needs of every student that crosses our paths, our colleges work every day to help meet the needs of the communities they serve,” added Baker.

“On behalf of the Alabama Department of Public Health, I am grateful for the willingness of the Alabama Community College System to grant the urgent request for the loan of their available ventilators in response to the COVID-19 pandemic,” commented State Health Officer Scott Harris.

“We are continually encouraged by the number of entities across the state that are rising to the occasion to meet the needs of the citizens of Alabama,” Harris concluded.

Henry Thornton is a staff writer for Yellowhammer News. You can contact him by email: henry@yellowhammernews.com or on Twitter @HenryThornton95.