Tag: hospice care

A year after Jimmy Carter’s entered hospice care, advocates hope his endurance drives awareness

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Since Jimmy Carter entered hospice care at his home in south Georgia one year ago, the former U.S. president has celebrated his 99th birthday, enjoyed tributes to his legacy and lost his wife of 77 years.Rosalynn Carter, who died in November, about six months after the Carter family disclosed her dementia diagnosis, lived only a few days under hospice supervision, with her frail husband at her bedside.Experts on end-of-life care say the Carters’ different paths show the range of an oft-misunderstood service. Those advocates commend the Carter family for demonstrating the realities of aging, dementia and death. They express hope that the attention spurs more Americans to seek out services intended to help patients and families in the latter stages of life.“It’s been massive to have the Carters be so public,” said Angela Novas, chief medical officer for the Hospice Foundation of America, based in Washington. “It has shed hospice in a new light, and it’s raised questions” for people to learn more.The Carter family released a statement ahead of Sunday, the first anniversary of their announcement that the 39th president would forgo future hospital stays and enter end-of-life care at home in Plains.“President Carter continues to be at home with his family,” the statement said. “The family is pleased that his decision last year to enter hospice care has sparked so many family discussions across the country on an important subject.”To be clear, the family has not confirmed whether Jimmy Carter remains in hospice care or has been discharged, as sometimes happens when even a frail patient’s health stabilizes.Here is a look at hospice and the Carters’ circumstances:HOSPICE SERVES EVERYONE, EVEN THE RICH AND POWERFULMollie Gurian is vice president of Leading Age, a national network of more than 5,000 nonprofit elder-care agencies. She described hospice as “holistic care … for someone who is trying to live the end of their life as fully as possible” but no longer seeks a cure for a terminal condition.Hospice offers multiple practitioners for each patient: nurses, physicians and social-service professionals like chaplains and secular grief counselors. Home hospice features in-home visits but not round-the-clock or even full-shift care.Initial eligibility requires a physician’s certification of a terminal condition, with the expectation that a person will not live longer than six months; there are also disease-specific parameters.For-profit businesses or nonprofit agencies typically provide the care and employ the providers. Medicare pays those agencies a per-day rate for each patient. There are four levels of care and daily rates. The concept was developed after World War II and has been part of the Medicare program since the early 1980s. Private insurance plans also typically cover hospice.In 2021, 1.7 million Medicare beneficiaries enrolled in hospice at a taxpayer cost of $23.1 billion, according to the federal Medicare Payment Advisory Commission (MedPAC). Almost half of Medicare patients who died that year did so under hospice care.HOSPICE IS MORE THAN THE ‘MORPHINE MYTH’Hospice can elicit images of “someone doped up and bedridden,” but it is not “just providing enough morphine to make it through the end,” Gurian said.Indeed, patients give up curative treatments and many medicines. Cancer patients no longer receive radiation or chemotherapy. Those with late-stage Alzheimer’s, Parkinson’s or another degenerative neurological disease typically ditch cholesterol and blood-pressure medication — and eventually, drugs that regulate their acute condition.But Novas and Gurian said treatment is case-by-case. Some agencies might allow someone with end-stage kidney disease to get dialysis or take regulatory medication. They simply have to absorb the cost, because Medicare almost certainly does not pay separately for those treatments.Further, hospice does not necessarily mean forgoing treatments for certain complications that threaten comfort: antibiotics for a urinary tract infection or infected bed sores, for example. That said, patients or families may forgo such treatments, especially in cases of end-stage neurological disease.Chip Carter, one of Jimmy and Rosalynn Carter’s four children, confirmed to The Washington Post that his mother was suffering from a severe urinary tract infection at the time of her hospice admission and death. In those cases, Novas explained, patients are administered pain management drugs.Video below: Jimmy Carter arrives at Rosalynn Carter’s tribute service in November 2023JIMMY CARTER’S ENDURANCE IS NOT UNUSUALIn 2021, the average stay of hospice patients who died was 92 days, MedPAC calculated. The median was 17 days — about two weeks longer than the time between when the Carters’ announced the former first lady had entered hospice and when she died.About 10% of enrollees who die in hospice care stayed more than 264 days. Extended cases drive a majority of costs. In 2021, $13.6 billion of the overall $23 billion paid was for stays exceeding 180 days before death. Of that, $5 billion was for stays longer than a year.Patients are sometimes discharged from hospice if their condition stabilizes, especially if they have reached the six-month mark in the program. In 2021, 17.2% of the patients were discharged. The MedPAC report to Congress noted that for-profit agencies have higher average length of stays than nonprofits and added that living patients’ discharge rates raise questions about admission standards.Novas offered explanations. She said hospice has seen an uptick in patients with dementia, conditions in which “a patient can wax and wane for months or even years.” Another factor — one she said could explain Jimmy Carter’s endurance — is sheer grit.“We cannot measure the human spirit,” she said. With many conditions, “somebody who wants to be here is going to stick around for a while.”ADVOCATES WANT CHANGES AND EXPANSIONMedicare does not include a long-term care insurance provision, something that Leading Age and other advocates argue the U.S. needs, especially as the Baby Boomer generation ages.That kind of care, she said, would help patients and families absorb significant burdens of care that hospitals do not provide and that hospice does not cover — or at least should not cover. A long-term care benefit, for example, could become a more common route of insured care in some dementia cases.Legislation has been introduced in Congress in recent sessions to create a long-term care plan under Medicare. But it is politically difficult, if not impossible, because it calls for an increase in payroll taxes to finance a new benefit.Separately, Gurian said Leading Age would like Congress to increase hospice payments structures so more agencies might admit patients and still cover certain treatments they now typically forgo. For example, she said some cancer patients could ratchet down cancer treatments as part of pain management rather than give up treatment altogether and advance more rapidly to heavy drugs like morphine that eliminate quality of life.JIMMY CARTER STILL OFFERING LESSONSGurian said the U.S. health care system and American society too often see just two choices for someone with a grave diagnosis: “fighting” or “giving up.”“Hospice is not giving up,” she said, even if it means “accepting our mortality.”Novas said Jimmy Carter has proven those distinctions with his public announcements and, in November, his determination to attend Rosalynn Carter’s funeral, physically diminished, reclined in a wheelchair, his legs covered in a blanket.“That was such an important moment,” Novas said, for the world to “see what 99 looks like,” even for a former president. “He still has lessons for us. I think, on some level, he must be aware of what he’s doing. … Hospice is just a partner in that journey. But it’s his journey.”

ATLANTA —

Since Jimmy Carter entered hospice care at his home in south Georgia one year ago, the former U.S. president has celebrated his 99th birthday, enjoyed tributes to his legacy and lost his wife of 77 years.

Rosalynn Carter, who died in November, about six months after the Carter family disclosed her dementia diagnosis, lived only a few days under hospice supervision, with her frail husband at her bedside.

Experts on end-of-life care say the Carters’ different paths show the range of an oft-misunderstood service. Those advocates commend the Carter family for demonstrating the realities of aging, dementia and death. They express hope that the attention spurs more Americans to seek out services intended to help patients and families in the latter stages of life.

“It’s been massive to have the Carters be so public,” said Angela Novas, chief medical officer for the Hospice Foundation of America, based in Washington. “It has shed hospice in a new light, and it’s raised questions” for people to learn more.

The Carter family released a statement ahead of Sunday, the first anniversary of their announcement that the 39th president would forgo future hospital stays and enter end-of-life care at home in Plains.

“President Carter continues to be at home with his family,” the statement said. “The family is pleased that his decision last year to enter hospice care has sparked so many family discussions across the country on an important subject.”

To be clear, the family has not confirmed whether Jimmy Carter remains in hospice care or has been discharged, as sometimes happens when even a frail patient’s health stabilizes.

Here is a look at hospice and the Carters’ circumstances:

HOSPICE SERVES EVERYONE, EVEN THE RICH AND POWERFUL

Mollie Gurian is vice president of Leading Age, a national network of more than 5,000 nonprofit elder-care agencies. She described hospice as “holistic care … for someone who is trying to live the end of their life as fully as possible” but no longer seeks a cure for a terminal condition.

Hospice offers multiple practitioners for each patient: nurses, physicians and social-service professionals like chaplains and secular grief counselors. Home hospice features in-home visits but not round-the-clock or even full-shift care.

Initial eligibility requires a physician’s certification of a terminal condition, with the expectation that a person will not live longer than six months; there are also disease-specific parameters.

For-profit businesses or nonprofit agencies typically provide the care and employ the providers. Medicare pays those agencies a per-day rate for each patient. There are four levels of care and daily rates. The concept was developed after World War II and has been part of the Medicare program since the early 1980s. Private insurance plans also typically cover hospice.

In 2021, 1.7 million Medicare beneficiaries enrolled in hospice at a taxpayer cost of $23.1 billion, according to the federal Medicare Payment Advisory Commission (MedPAC). Almost half of Medicare patients who died that year did so under hospice care.

HOSPICE IS MORE THAN THE ‘MORPHINE MYTH’

Hospice can elicit images of “someone doped up and bedridden,” but it is not “just providing enough morphine to make it through the end,” Gurian said.

Indeed, patients give up curative treatments and many medicines. Cancer patients no longer receive radiation or chemotherapy. Those with late-stage Alzheimer’s, Parkinson’s or another degenerative neurological disease typically ditch cholesterol and blood-pressure medication — and eventually, drugs that regulate their acute condition.

But Novas and Gurian said treatment is case-by-case. Some agencies might allow someone with end-stage kidney disease to get dialysis or take regulatory medication. They simply have to absorb the cost, because Medicare almost certainly does not pay separately for those treatments.

Further, hospice does not necessarily mean forgoing treatments for certain complications that threaten comfort: antibiotics for a urinary tract infection or infected bed sores, for example. That said, patients or families may forgo such treatments, especially in cases of end-stage neurological disease.

Chip Carter, one of Jimmy and Rosalynn Carter’s four children, confirmed to The Washington Post that his mother was suffering from a severe urinary tract infection at the time of her hospice admission and death. In those cases, Novas explained, patients are administered pain management drugs.

Video below: Jimmy Carter arrives at Rosalynn Carter’s tribute service in November 2023

JIMMY CARTER’S ENDURANCE IS NOT UNUSUAL

In 2021, the average stay of hospice patients who died was 92 days, MedPAC calculated. The median was 17 days — about two weeks longer than the time between when the Carters’ announced the former first lady had entered hospice and when she died.

About 10% of enrollees who die in hospice care stayed more than 264 days. Extended cases drive a majority of costs. In 2021, $13.6 billion of the overall $23 billion paid was for stays exceeding 180 days before death. Of that, $5 billion was for stays longer than a year.

Patients are sometimes discharged from hospice if their condition stabilizes, especially if they have reached the six-month mark in the program. In 2021, 17.2% of the patients were discharged. The MedPAC report to Congress noted that for-profit agencies have higher average length of stays than nonprofits and added that living patients’ discharge rates raise questions about admission standards.

Novas offered explanations. She said hospice has seen an uptick in patients with dementia, conditions in which “a patient can wax and wane for months or even years.” Another factor — one she said could explain Jimmy Carter’s endurance — is sheer grit.

“We cannot measure the human spirit,” she said. With many conditions, “somebody who wants to be here is going to stick around for a while.”

ADVOCATES WANT CHANGES AND EXPANSION

Medicare does not include a long-term care insurance provision, something that Leading Age and other advocates argue the U.S. needs, especially as the Baby Boomer generation ages.

That kind of care, she said, would help patients and families absorb significant burdens of care that hospitals do not provide and that hospice does not cover — or at least should not cover. A long-term care benefit, for example, could become a more common route of insured care in some dementia cases.

Legislation has been introduced in Congress in recent sessions to create a long-term care plan under Medicare. But it is politically difficult, if not impossible, because it calls for an increase in payroll taxes to finance a new benefit.

Separately, Gurian said Leading Age would like Congress to increase hospice payments structures so more agencies might admit patients and still cover certain treatments they now typically forgo. For example, she said some cancer patients could ratchet down cancer treatments as part of pain management rather than give up treatment altogether and advance more rapidly to heavy drugs like morphine that eliminate quality of life.

JIMMY CARTER STILL OFFERING LESSONS

Gurian said the U.S. health care system and American society too often see just two choices for someone with a grave diagnosis: “fighting” or “giving up.”

“Hospice is not giving up,” she said, even if it means “accepting our mortality.”

Novas said Jimmy Carter has proven those distinctions with his public announcements and, in November, his determination to attend Rosalynn Carter’s funeral, physically diminished, reclined in a wheelchair, his legs covered in a blanket.

“That was such an important moment,” Novas said, for the world to “see what 99 looks like,” even for a former president. “He still has lessons for us. I think, on some level, he must be aware of what he’s doing. … Hospice is just a partner in that journey. But it’s his journey.”

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February 18, 2024
A year after Jimmy Carter’s entered hospice care, advocates hope his endurance drives awareness

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ATLANTA — Since Jimmy Carter entered hospice care at his home in south Georgia one year ago, the former U.S. president has celebrated his 99th birthday, enjoyed tributes to his legacy and lost his wife of 77 years.

Rosalynn Carter, who died in November, about six months after the Carter family disclosed her dementia diagnosis, lived only a few days under hospice supervision, with her frail husband at her bedside.

Experts on end-of-life care say the Carters’ different paths show the range of an oft-misunderstood service. Those advocates commend the Carter family for demonstrating the realities of aging, dementia and death. They express hope that the attention spurs more Americans to seek out services intended to help patients and families in the latter stages of life.

“It’s been massive to have the Carters be so public,” said Angela Novas, chief medical officer for the Hospice Foundation of America, based in Washington. “It has shed hospice in a new light, and it’s raised questions” for people to learn more.

The Carter family released a statement ahead of Sunday, the one-year anniversary of their announcement that the 39th president would forgo future hospital stays and enter end-of-life care at home in Plains.

“President Carter continues to be at home with his family,” the statement said. “The family is pleased that his decision last year to enter hospice care has sparked so many family discussions across the country on an important subject.”

To be clear, the family has not confirmed whether Jimmy Carter remains in hospice care or has been discharged, as sometimes happens when even a frail patient’s health stabilizes.

Here is a look at hospice and the Carters’ circumstances:

Mollie Gurian is vice president of Leading Age, a national network of more than 5,000 nonprofit elder-care agencies. She described hospice as “holistic care … for someone who is trying to live the end of their life as fully as possible” but no longer seeks a cure for a terminal condition.

Hospice offers multiple practitioners for each patient: nurses, physicians and social-service professionals like chaplains and secular grief counselors. Home hospice features in-home visits but not round-the-clock or even full-shift care.

Initial eligibility requires a physician’s certification of a terminal condition, with the expectation that a person will not live longer than six months; there are also disease-specific parameters.

For-profit businesses or nonprofit agencies typically provide the care and employ the providers. Medicare pays those agencies a per-day rate for each patient. There are four levels of care and daily rates. The concept was developed after World War II and has been part of the Medicare program since the early 1980s. Private insurance plans also typically cover hospice.

In 2021, 1.7 million Medicare beneficiaries enrolled in hospice at a taxpayer cost of $23.1 billion, according to the federal Medicare Payment Advisory Commission (MedPAC). Almost half of Medicare patients who died that year did so under hospice care.

Hospice can elicit images of “someone doped up and bedridden,” but it is not “just providing enough morphine to make it through the end,” Gurian said.

Indeed, patients give up curative treatments and many medicines. Cancer patients no longer receive radiation or chemotherapy. Those with late-stage Alzheimer’s, Parkinson’s or another degenerative neurological disease typically ditch cholesterol and blood-pressure medication — and eventually drugs that regulate their acute condition.

But Novas and Gurian said treatment is case-by-case. Some agencies might allow someone with end-stage kidney disease to get dialysis or take regulatory medication. They simply have to absorb the cost, because Medicare almost certainly does not pay separately for those treatments.

Further, hospice does not necessarily mean forgoing treatments for certain complications that threaten comfort: antibiotics for a urinary tract infection or infected bed sores, for example. That said, patients or families may forgo such treatments, especially in cases of end-stage neurological disease.

Chip Carter, one of Jimmy and Rosalynn Carter’s four children, confirmed to The Washington Post that his mother was suffering from a severe urinary tract infection at the time of her hospice admission and death. In those cases, Novas explained, patients are administered pain management drugs.

In 2021, the average stay of hospice patients who died was 92 days, MedPAC calculated. The median was 17 days — about two weeks longer than the time between when the Carters’ announced the former first lady had entered hospice and when she died.

About 10% of enrollees who die in hospice care stayed more than 264 days. Extended cases drive a majority of costs. In 2021, $13.6 billion of the overall $23 billion paid was for stays exceeding 180 days before death. Of that, $5 billion was for stays longer than a year.

Patients are sometimes discharged from hospice if their condition stabilizes, especially if they have reached the six-month mark in the program. In 2021, 17.2% of the patients were discharged. The MedPAC report to Congress noted that for-profit agencies have higher average length of stays than nonprofits and added that living patients’ discharge rates raise questions about admission standards.

Novas offered explanations. She said hospice has seen an uptick in patients with dementia, conditions in which “a patient can wax and wane for months or even years.” Another factor — one she said could explain Jimmy Carter’s endurance — is sheer grit.

“We cannot measure the human spirit,” she said. With many conditions, “somebody who wants to be here is going to stick around for a while.”

Medicare does not include a long-term care insurance provision, something that Leading Age and other advocates argue the U.S. needs, especially as the Baby Boomer generation ages.

That kind of care, she said, would help patients and families absorb significant burdens of care that hospitals do not provide and that hospice does not cover — or at least should not cover. A long-term care benefit, for example, could become a more common route of insured care in some dementia cases.

Legislation has been introduced in Congress in recent sessions to create a long-term care plan under Medicare. But it is politically difficult, if not impossible, because it calls for an increase in payroll taxes to finance a new benefit.

Separately, Gurian said Leading Age would like Congress to increase hospice payments structures so more agencies might admit patients and still cover certain treatments they now typically forgo. For example, she said some cancer patients could ratchet down cancer treatments as part of pain management rather than give up treatment altogether and advance more rapidly to heavy drugs like morphine that eliminate quality of life.

Gurian said the U.S. health care system and American society too often see just two choices for someone with a grave diagnosis: “fighting” or “giving up.”

“Hospice is not giving up,” she said, even if it means “accepting our mortality.”

Novas said Jimmy Carter has proven those distinctions with his public announcements and, in November, his determination to attend Rosalynn Carter’s funeral, physically diminished, reclined in a wheelchair, his legs covered in a blanket.

“That was such an important moment,” Novas said, for the world to “see what 99 looks like,” even for a former president. “He still has lessons for us. I think, on some level, he must be aware of what he’s doing. … Hospice is just a partner in that journey. But it’s his journey.”

___ On the web: https://hospicefoundation.org/Ask-HFA

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February 17, 2024
Rosalynn and Jimmy Carter were not only a global power couple but also best friends and life mates

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PLAINS, Ga. — In spring 1955, Rosalynn Carter was doing what she had sworn to avoid when she married an ambitious Naval officer: keeping house and raising children in the same tiny town where they grew up.

Then Jimmy Carter called for help from his family’s peanut farming warehouse. The future U.S. president couldn’t manage on his own, and they had no money to hire employees. So his wife gathered their sons and went to answer the company phone. Soon she was managing finances and handling customers.

Before long, “I knew more on paper about the business than he did, and he would take my advice about things,” Rosalynn Carter told The Associated Press ahead of their 75th anniversary in 2021.

Their marriage was almost a decade old when she went to the warehouse, but that was perhaps the true beginning of a partnership that won the Georgia governor’s office in 1970, the White House in 1976 and then propelled the Carters through four decades as global humanitarians. Undergirding that path was a small-town love story that spanned 77 years of marriage and two decades of family friendships before that.

Their shared journey ended Nov. 19 with Rosalynn Carter’s death at the age of 96. The former president, now 99, was with her when she died at their home in Plains, where they lived all their lives, with the exceptions of his college and Navy years, one gubernatorial term and their White House years from 1977-81.

“Rosalynn was my equal partner in everything I ever accomplished,” Jimmy Carter said in a statement released upon her death by The Carter Center, which they co-founded in 1982 after leaving Washington. “She gave me wise guidance and encouragement when I needed it. As long as Rosalynn was in the world, I always knew somebody loved and supported me.”

It is not known whether the 39th president, confined mostly to a wheelchair and hospital bed in his 10th month of hospice care, will attend tributes that begin Monday. Those close to the family say they expect he will make every effort, especially for the final services: an invitation-only funeral Wednesday in Plains and private burial in a plot the couple eventually will share.

“It’s hard to think of one of them without the other,” said Jill Stuckey, a longtime friend who saw the couple often during Rosalynn Carter’s last months.

Rosalynn Carter often campaigned separately from her husband to expand their reach: “If I go with Jimmy I just sit there,” she once said. “I can use my time better than that.”

As president, Jimmy Carter sent her abroad as an official diplomat. She attended Cabinet meetings and discussed what she heard with him in the residence. They avoided dancing with others at White House dinners and had nightly phone calls when they traveled separately.

After the presidency, they built The Carter Center together. They met with world leaders, monitored elections and fought disease in developing nations. Sometimes she took notes, other times spoke up. There are remote villages within the 145-plus countries they visited between them where children, many now adults, were named Jimmy or Rosalynn or Carter.

They read the Bible together each night, even over the phone, a practice that endured as they aged. Sometimes they read aloud in Spanish to stay proficient in their second language, even after their international travels waned. And they held hands often: at home, in church, walking down Pennsylvania Avenue on Inauguration Day in 1977, and as she lay on her deathbed in the home they built before his first legislative election in 1962.

“We don’t go to sleep with some remaining differences between us,” the former president told AP in 2021.

The couple’s parents were neighbors in the mid-1920s. Lillian Carter, a nurse, delivered Eleanor Rosalynn Smith and a few days later brought young Jimmy Carter back to the Smith home to meet the baby. The couple’s earliest memories came after the Carters moved to a farm outside of town and Rosalynn became a close friend of Ruth Carter, Jimmy’s younger sister.

By the time he was at the U.S. Naval Academy, Ruth was working as matchmaker. Rosalynn said she first “fell in love with Jimmy’s picture” hung in Ruth’s bedroom. Then in the summer of 1945, when he was home from Annapolis, Jimmy agreed to a picnic with his sister and her friend, then a date with Rosalynn. Jimmy kissed her after a movie and the next morning told his mother he would marry Rosalynn Smith.

“I had never had a boy kiss me on a first date,” Rosalynn recalled.

Yet she saw seeds of something deeper than teenage romance. Usually shy, she found she “could talk to him, actually talk to him.” Teasing and flirting became letters to and from Annapolis, then his proposal. She rejected it, telling him she promised her father, who had died in 1940, that she would finish college.

After both graduated, they were married July 7, 1946.

Jimmy Carter was a smitten newlywed, writing in poetry that his wife’s beauty struck songbirds into silence. But he didn’t view her as a true equal yes, decades later attributing that attitude to the social and religious mores of the era.

Rosalynn Carter had dreams of becoming an architect but saw her husband’s Navy career as a way to escape rural life. Neither had intentions of returning to Plains, but when James Earl Carter Sr. died in 1953, his namesake son resigned his commission to move his family back to Georgia, where he took over the family farm. Jimmy Carter did not ask his wife. He remembered six decades later how “cool” she was to him for months. The dynamic did not thaw completely until she asserted herself as an indispensable business partner.

The future president still did not consult his wife when he launched his first political campaign. In that instance, however, she was on board and excited about his prospects. After he took his state Senate seat in Atlanta, she recognized the nature of their pairing.

“I was more of a political partner than a political wife, and I never felt put upon,” she said of staying behind in Plains to run the business and care for their children. “I only had to call him home once, when one of our old brick warehouses collapsed, dumping several hundred tons of peanuts into the street.”

As her husband ran for governor, she reported back to him what voters were telling her, the beginning of her half-century of advocacy for better mental health treatment in America.

On the presidential trail, she could guide him more effectively than his aides. “Jimmy, don’t go into so much detail and use such big words,” she would tell him. “Just explain it to them the way you do to me.”

White House adviser Stuart Eizenstat said the former first lady had “uncanny political instincts.”

The peaks of their political life forged what family and close friends remember as a bond that thrived not just on mutual respect but competitiveness.

“My grandparents were notoriously competitive about everything,” said eldest grandson Jason Carter, now Carter Center board chairman.

They raced to finish writing their next books or best the other in tennis, skiing or any other pursuit in their later years. Jason Carter laughed about fish mounts at the family’s mountain cabin as one flaunted their superior catch, only to be outdone by the other.

“‘How many did she catch? How big were they?’” Stuckey recalled the former president asking her one day as she bounced between the two on the edges of their pond in Plains. “I’d go back to Rosalynn, and she’d say, ‘What’d he say? How many does he have?’”

For the former first lady, it was all part of any healthy marriage.

“Jimmy and I are always looking for things to do together,” she told AP at age 93, but “each (person) should have some space. That’s really important.”

As their global footprint narrowed first to the U.S., then to The Carter Center campus in Atlanta, and finally to their home and surrounding town, even that friendly competition gave way to two nonagenarians trying to take care of each other.

“They could finish each other’s sentences,” Stuckey said of her many Saturday night meals at the Carters’ table or with them at hers.

Chip Carter, the couple’s son who spent much of the recent months with his parents, told The Washington Post after his mother’s death that as she declined rapidly in her final days, his father asked to be alone with his partner of nearly eight decades. First, Jimmy Carter sat at her bedside in his wheelchair. Later, hospice aides moved his bed to the foot of hers.

He remained there until she was gone, then asked to be with his once-shy bride one more time, just Jimmy and Rosalynn.

“They were never alone, really, during their time on this earth,” Jason Carter said. “They always had each other.”

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November 26, 2023
Rosalynn Carter, 96-year-old former first lady, is in hospice care at home, Carter Center says

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Former first lady Rosalynn Carter is in hospice care at home in Plains, Georgia, joining former President Jimmy Carter, who has been receiving end-of-life care since February, their family announced Friday.

The Carter family said they are “grateful for the outpouring of love and support” but asked for privacy. The Carters have been married for 77 years and are the longest-married presidential couple in U.S. history.

The family announced earlier this year that the 96-year-old former first lady is suffering from dementia. The former president, now 99, entered hospice care at home in February but remains alert, those close to him say.

They have been together through Jimmy Carter’s rise from their Georgia farm to his election to the presidency in 1976. After his 1980 defeat, the couple established The Carter Center in Atlanta as a global center to advocate human rights, democracy and public health.

“I loved politics,” Rosalynn Carter told The Associated Press in 2021. She said she had “the best time” campaigning on her husband’s behalf in what they both described as “a full partnership.”

Long after leaving the White House, Jimmy Carter said, “The best thing I ever had happen in my life was when she said she’d marry me.”

The family’s announcement Friday brought a new round of tributes.

Georgia Sen. Raphael Warnock called the former first lady “a remarkable woman of great faith” and said “her service to Georgia and our country is part of an incredible legacy.”

Tedros Adhanom Ghebreyesus, director-general of the World Health Organization who worked with the Carters on public health initiatives for decades, wrote on X, formerly known as Twitter, that he was “thinking of the former First Lady and the President tonight, and appreciating their lifelong dedication to making the world a bitter, fairer, healthier place for all.”

The couple’s grandson, Jason Carter, said in a recent interview that his grandparents have enjoyed spending their “last chapter” together at home, celebrating their longevity, family and love in the same tiny Georgia town where they both were born.

“That word love is really the one that defines certainly their personal relationship, but also the way they approach this world,” said Jason Carter, who is now chair of The Carter Center’s governing board.

Beyond her role as top presidential adviser, Rosalynn Carter became one of the world’s leading advocates for mental health care and elevating the role of caregivers in American life. She helped the Carter administration push through significant health care legislation during her husband’s term, and she continued her work after their White House years by establishing a fellowship for journalists to concentrate on more impactful ways to cover mental health issues.

She emphasized for years the need to reduce stigma attached to people who struggle with mental health conditions. Decades after leaving the White House, she testified on Capitol Hill urging Congress to put treatment and insurance for mental health conditions on par with other conditions in the U.S. health care system. She traveled the world helping developing nations confront their lack of mental health resources.

“I want people to know what I know — that today because of research and our knowledge of the brain, mental illnesses can be diagnosed and treated effectively, and the majority of those with these illnesses can recover and lead fulfilling lives … going to school, working, raising a family, and being productive citizens in their communities,” she said.

At the height of the Carters’ political power, the Washington press corps of the late 1970s dubbed Rosalynn Carter “the Steel Magnolia,” reflecting the quiet grace stereotypical of the era’s Southern political wives and a tough core that made her a force on her husband’s behalf and in her own right.

“She knew what she wanted to accomplish,” said Kathy Cade, a White House adviser to Rosalynn Carter.

Expanding the role of first lady, she worked in her own office in the East Wing with her own staff and on her own initiatives. She also huddled with the president’s advisers and sat in on top-level meetings, raising eyebrows in Washington power circles.

“She didn’t say anything in Cabinet meetings, but she wanted to be fully informed so she could give her husband good advice,” said Carter biographer Jonathan Alter.

Alter considers Rosalynn Carter’s only peers as influential first ladies to be Eleanor Roosevelt and Hillary Clinton, although he said the Carters’ partnership was more seamless, because it lacked the infidelity and personal drama of the Roosevelts and Clintons.

The bond also involved friendly rivalry and humor: “I never knew I’d be married to somebody that old,” Jimmy Carter wisecracked when his wife was 91.

They often raced to finish writing their next books or tried to best the other in tennis, skiing or any other pursuit.

Rosalynn Carter was at the center of her husband’s political campaigns, starting with his first state Senate race in 1962.

“In the beginning, I wrote letters to people. He would go out and then I would write letters to them,” she told The Associated Press. “But then it developed into a full-time job for me, working to help him get elected.”

She first campaigned solo during Jimmy Carter’s 1966 bid for governor. She was initially nervous but warmed to the role and ultimately demonstrated what White House adviser Stuart Eizenstat called “uncanny political instinct.”

In the White House, it was Rosalynn Carter who urged her husband to think more about the 1980 election as he set priorities, and talk through how decisions might play in the media. When Jimmy Carter stayed in Washington to work every angle to free the American hostages in Iran, the first lady hit his reelection campaign trail.

“I campaigned solid every day the last time we ran,” she told the AP.

Her emphasis on mental health and reducing stigma traced back to her husband’s Georgia campaigns.

Voters “would stand patiently” waiting to tell of their family struggles, she once wrote. After hearing one overnight mill worker’s story of caring for her afflicted child, Rosalynn Carter decided to take the issue to the candidate. She showed up at her husband’s rally that day, unannounced, and stood in line to shake his hand like everyone else.

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November 17, 2023
Rosalynn Carter marks 96th birthday at home with the former president, butterflies and ice cream

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ATLANTA — Rosalynn Carter will celebrate her 96th birthday at home Friday with her husband, former President Jimmy Carter, and other family members, while the surrounding community of Plains, Georgia, honors the former first lady’s years of public health advocacy.

The latest milestone comes as Rosalynn Carter navigates dementia and the former president, now 98, continues to receive hospice care. Yet they remain together in the same small town where they were born, married and that anchored Jimmy Carter’s victorious 1976 presidential campaign.

Rosalynn will have a quiet birthday celebration, according to The Carter Center, the human rights organization the pair opened in Atlanta after losing his 1980 reelection bid. She plans to eat cupcakes and peanut butter ice cream, nodding to the couple’s experience as Georgia peanut farmers, which became part of their political branding.

She also will release butterflies in the Carters’ garden; her love of butterflies traces back to childhood. Extended family and friends also plan for several butterfly releases around Plains, including at the small public garden next to the home where Eleanor Rosalynn Smith was born on Aug. 18, 1927.

The Rosalynn Carter Institute for Caregivers is sponsoring a screening of a new film, “Unconditional,” which focuses on the challenges people face as caregivers for sick, aging and disabled loved ones. The event, scheduled for 6:30 p.m. at Plains High School, is open to the public.

Since her husband was Georgia governor in the early 1970s, Rosalynn Carter has called for a more comprehensive American health care system treating mental health as integral to overall health and recognizing the importance of caregivers to the nation’s social and economic well-being.

“Her incredible ability is to both look at a problem from the need for policy changes, and to think about the individual who lives next door or down the street and is struggling,” said Jennifer Olsen, who leads the Rosalynn Carter Institute.

Olsen noted the former first lady has pushed multiple U.S. administrations to establish an office within the Department of Health and Human Services dedicated exclusively to advocating for caregivers. The office develops specific programs to aid caregivers and analyzes all public policy — from tax provisions to labor rules and regulations — through the vantage point of people caring for loved ones.

Her emphasis on caregiving has gained new attention amid the Carters’ declining health. In February, The Carter Center announced the 39th president would forgo further hospital treatment and instead receive only end-of-life care at home. In May, the family also disclosed the former first lady has dementia, though they have not offered details about her condition.

In recent months the couple’s four children, and many grandchildren and great-grandchildren, have been a near-constant presence at the compound. Close friends and some extended family also have visited, as the couple seems to defy their age and conditions, even attending the Plains’ Independence Day fireworks display in July.

The circumstances bring a sharper focus to one of Rosalynn’s favorite observations, Olsen said.

“There are only four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers,” she has said over the years.

Rosalynn Carter is the second-oldest presidential spouse in U.S. history. Bess Truman died at 97 in 1982, the year after the Carters left the White House. Jimmy Carter is the longest-lived president. The longest-married first couple in history, the Carters’ marked their 77th wedding anniversary in July.

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August 17, 2023
Having ‘The Talk’ with Your Doctor About Your Late-Stage NSCLC Treatment and Outlook

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Late-stage, NSCLC, treatment, outcome, palliative care, hospice care, and outlook.

091e9c5e820faac4091e9c5e820faac4FED-Footermodule_FED-Footer_091e9c5e820faac4.xmlwbmd_pb_templatemodule0144002/02/2021 01:57:340HTML

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January 3, 2023
Reports: Suspect in deputy’s homicide dies in hospice care

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ROCK HILL, S.C. — A South Carolina man accused of killing a sheriff’s deputy in June has died in hospice care.

Duane Heard died Friday in Rock Hill, new outlets reported, citing the Spartanburg County coroner.

Heard was charged with murder in the death of 25-year-old Spartanburg County Deputy Austin Derek Aldridge, who was among deputies responding to a domestic disturbance call on June 21 west of Spartanburg.

When Aldridge knocked on Heard’s door after a woman reported that Heard assaulted her, Heard came out and shot Aldridge in the head, authorities have said. They described it as an ambush.

Officials said Heard then stole Aldridge’s gun, keys and electric stun gun and fled. Aldridge tried to evade a traffic stop by pretending to surrender, then wrecked his vehicle, running into the woods while repeatedly exchanging gunfire with deputies, authorities said. The Spartanburg County Coroner’s Office said Heard was shot twice before his capture.

Prosecutors had said they would seek the death penalty against Heard. He had been receiving treatment for his injuries until he was discharged and booked into the York County jail on Oct. 20.

The coroner said while in custody, Heard’s health deteriorated and he was taken into hospice care.

Aldridge had been a deputy for three years. His widow, Jessica Link Aldridge, was pregnant when Aldridge died and scheduled to deliver in February 2023.

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October 30, 2022
‘It Just Seems Like My Patients Are Sicker’

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The most haunting memory of the pandemic for Laura, a doctor who practices internal medicine in New York, is a patient who never got COVID at all. A middle-aged man diagnosed with Stage 3 colon cancer in 2019, he underwent surgery and a round of successful chemotherapy and was due for regular checkups to make sure the tumor wasn’t growing. Then the pandemic hit, and he decided that going to the hospital wasn’t worth the risk of getting COVID. So he put it off … and put it off. “The next time I saw him, in early 2022, he required hospice care,” Laura told me. He died shortly after. With proper care, Laura said, “he could have stayed alive indefinitely.” (The Atlantic agreed to withhold Laura’s last name, because she isn’t authorized to speak publicly about her patients.)

Early in the pandemic, when much of the country was in lockdown, forgoing nonemergency health care as Laura’s patient did seemed like the right thing to do. But the health-care delays didn’t just end when America began to reopen in the summer of 2020. Patients were putting off health care through the end of the first pandemic year, when vaccines weren’t yet widely available. And they were still doing so well into 2021, at which point much of the country seemed to be moving on from COVID.

By this point, the coronavirus has killed more than 1 million Americans and debilitated many more. One estimate shows that life expectancy in the U.S. fell 2.41 years from 2019 to 2021. But the delays in health care over the past two and a half years have allowed ailments to unduly worsen, wearing down people with non-COVID medical problems too. “It just seems like my patients are sicker,” Laura said. Compared with before the pandemic, she is seeing more people further along with AIDS, more people with irreversible heart failure, and more people with end-stage kidney failure. Mental-health issues are more severe, and her patients struggling with addiction have been more likely to relapse.

Even as Americans are treating the pandemic like an afterthought, a disturbing possibility remains: COVID aside, is the country simply going to be in worse health than before the pandemic? According to health-care workers, administrations, and researchers I talked with from across the country, patients are still dealing with a suite of problems from delaying care during the pandemic, problems that in some cases they will be facing for the rest of their lives. The scope of this damage isn’t yet clear—and likely won’t come into focus for several years—but there are troubling signs of a looming chronic health crisis the country has yet to reckon with. At some point, the emergency phase of COVID will end, but the physical toll of the pandemic may linger in the bodies of Americans for decades to come.

During those bleak pre-vaccine dark ages, going to the doctor could feel like a disaster in waiting. Many of the country’s hospitals were overwhelmed with COVID patients, and outpatient clinics had closed. As a result, in every week through July 2020, roughly 45 percent of American adults said that over the preceding month, they either put off medical care or didn’t get it at all because of the pandemic. Once they did come in, they were sicker—a trend observed for all sorts of ailments, including childhood diabetes, appendicitis, and cancer. A recent study analyzed the 8.4 million non-COVID Medicare hospitalizations from April 2020 to September 2021 and found not only that hospital admissions plummeted, but also that those admitted to hospitals were up to 20 percent more likely to die—an astonishing effect that lasted through the length of the study.

Partly, that result came about because only those who were sicker made it to the hospital, James Goodwin, one of the study’s authors and a professor at the University of Texas Medical Branch, in Galveston, told me. It was also partly because overwhelmed hospitals were giving worse care. But Goodwin estimates that “more than half the cause was people delaying medical care early in their illness and therefore being more likely to die. Instead of coming in with a urinary tract infection, they’re already getting septic. I mean, people were having heart attacks and not showing up at the hospital.”

Read: America is sliding into the long pandemic defeat

For some conditions, skipping a checkup or two may not matter all that much in the long run. But for other conditions, every doctor’s visit can count. Take the tens of millions of Americans with vascular issues in their feet and legs due to diabetes or peripheral artery disease. Their problems might lead to, say, ulcers on the foot that can be treated with regular medical care, but delays of even a few months can increase the risk of amputation. When patients came in later in 2020, it was sometimes too late to save the limb. An Ohio trauma center found that the odds of undergoing a diabetes-related amputation in 2020 were almost 11 times higher once the pandemic hit versus earlier in the year.

Although only a small percentage of Americans lost a limb, the lack of care early in the pandemic helped fuel a dangerous spike in substance-abuse disorders. In a matter of weeks or months, people’s support systems collapsed, and for some, years of work overcoming an addiction unraveled. “My patients took a huge step back, probably more than many of us realize,” Aarti Patel, a physician assistant at a Lower Manhattan community hospital, told me. One of her patients, a man in his late 50s who was five years sober, started drinking again during the pandemic and eventually landed in the hospital for withdrawal. Patients like this man, she said, “would have really difficult, long hospital stays, because they were at really high risk of DTs, alcohol seizures. Some of them even had to go to the ICU because [the withdrawal] was so severe.”

Later in the year, when doctors’ offices were up and running, “a lot of patients expressed that they didn’t want to go back for care right away,” says Kim Muellers, a graduate student at Pace University who is studying the effects of COVID on medical care in New York City, North Carolina, and Florida. Indeed, through the spring of 2021, the top reason Medicare recipients failed to seek care was they didn’t want to be at a medical facility. Other people were avoiding the doctor because they’d lost their job and health insurance and couldn’t afford the bills.

The problem, doctors told me, is that all of those missed appointments start to add up. Patients with high blood pressure or blood sugar, for example, may now be less likely to have their conditions under control—which after enough time can lead to all sorts of other ailments. Losing a limb can pose challenges for patients that will last for the rest of their lives. Relapses can put people at a higher risk for lifelong medical complications. Cancer screenings plummeted, and even a few weeks without treatment can increase the chance of dying from the disease. In other words, even short-term delays can cause long-term havoc.

Read: How long can the coronavirus keep reinfecting us?

To make matters worse, the health-care delays fueling a sicker America may not be totally over yet, either. After so many backups, some health-care systems, hobbled by workforce shortages, are scrambling to address the pent-up demand for care that patients can simply no longer put off, according to administrators and doctors from several major health systems, including Cleveland Clinic, the Veterans Health Administration, and Mayo Clinic. Disruptions in the global supply chain are forcing doctors to ration basic supplies, adding to backlogs. Amy Oxentenko, a gastroenterologist at Mayo Clinic in Arizona who helps oversee clinical practice across the entire Mayo system, says that “all of these things are just adding up to a continued delay, and I think we’ll see impacts for years to come.”

It’s still early, and not everything that providers told me is necessarily showing up in the data. Oddly enough, the CDC’s National Health Interview Survey found that most Americans were able to see a doctor at least once during the first year of the pandemic. And the same survey has not revealed any uptick in most health conditions, including asthma episodes, high blood pressure, and chronic pain—which might be expected if America were getting sicker.

It’s even conceivable that the disturbing observations of clinicians are a statistical illusion. If for whatever reason only sicker people are now being seen by—or able to access—a doctor, then it can be true both that providers are seeing more seriously ill patients in medical facilities and that the total number of seriously ill people in the community is staying the same. The scope of the damage just isn’t yet clear: Maybe a smaller number of people will be worse off because of delayed cancer care or substance-abuse relapses, or maybe far more people—more than tens of million of Americans—will be dealing with exacerbated issues for the rest of their lives.

None of this accounts for what COVID itself is doing to Americans, of course. The health-care system is only beginning to grapple with the ways in which a past bout with COVID is a long-term risk for overall health, or the extent to which long COVID can complicate other conditions. The pandemic may feel “over” for lots of Americans, but many who made it through the gantlet of the past two-plus years may end up living sicker, and dying sooner.

This disturbing prospect is not only poised to further devastate communities; it’s also bad news for health-care workers already exhausted by COVID. Laura, the Manhattan internist who treated the colon-cancer patient, told me it’s disheartening to see so many people showing up at irreversible points in their disease. “As doctors,” she said, “our overall batting average is going down.” Aarti Patel, the physician assistant, put it in blunter terms: “Burnout is probably too simple a term. We’re in severe moral distress.”

Nothing about this grim fate was inevitable. Laura told me that “going to the doctor mid-pandemic may have posed a small risk in terms of COVID, but not going was risky in terms of letting disease go unchecked. And in retrospect it seems that many people didn’t quite get that.” But there didn’t have to be such a stark trade-off between fighting a pandemic and maintaining health care for other medical conditions.

Some hospitals—at least the better-resourced ones—figured out how to avoid the worst kind of delays. Mayo Clinic, for example, is one of a number of systems with a sophisticated triage algorithm that prioritizes patients needing acute care. In the spring of 2021, Cleveland Clinic launched a massive outreach blitz to schedule some 86,000 appointments, according to Lisa Yerian, the chief improvement officer. And the Veterans Health Administration provided iPads to thousands of veterans who lacked other means of accessing the internet in the spring of 2020, ensuring a more seamless transition to virtual care, Joe Francis, who directs health-care analytics, told me. Thanks in part to these efforts, Francis said, high-risk patients at the VHA were being seen at pre-pandemic levels a mere six months into the pandemic.

These health-care systems also suggest a path forward. America may still be able to stave off the worst of the collateral damage by reaching the patients who have fallen through the cracks—and already the data suggest that these patients tend to be disproportionately Black, Hispanic, and low-income. Tragically, it’s too late for some Americans: People who died of cancer can’t come back to life; amputated limbs can’t regrow. Others still have plenty of time. Hypertension that’s currently uncontrolled can be tamped down before causing an early heart attack; drinking that’s gotten out of hand can be corralled before it leads to liver failure in a decade; undetected tumors can be spotted in time for treatment. An uptick in premature death and disability, summed over millions of Americans, could strain the health-care system for years. But it’s still possible to prevent an acute public-health crisis from seeding an even bigger chronic one.

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Tim Requarth

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August 29, 2022