Since entering hospice care at his home in south Georgia one year ago, Jimmy Carter, the former U.S. president, has experienced several significant events. He celebrated his 99th birthday, received heartfelt tributes recognizing his remarkable legacy, and sadly, he also lost his beloved wife of 77 years.
Rosalynn Carter passed away in November, just six months after her dementia diagnosis was made public by the Carter family. During her final days, she received hospice care, with her husband by her side.
According to experts in end-of-life care, the Carters’ divergent journeys exemplify the various aspects of a frequently misunderstood service. These advocates applaud the Carter family for shedding light on the realities of aging, dementia, and mortality. They are hopeful that the attention garnered from their experiences will encourage more Americans to explore the available services designed to support patients and families during the final stages of life.
Angela Novas, the chief medical officer for the Hospice Foundation of America, based in Washington, expressed the significant impact of the Carters’ public presence. She mentioned how their openness has brought hospice care into a new perspective, sparking curiosity among individuals and encouraging them to seek more information.
The Carter family issued a statement in anticipation of Sunday, marking the one-year anniversary of their declaration that the 39th president would no longer seek hospitalization and instead receive end-of-life care at home in Plains.
In a recent statement, it was mentioned that President Carter is currently spending time at home with his family. The family expresses their satisfaction with his decision to enter hospice care last year, as it has sparked meaningful discussions on this significant topic throughout the country.
The family has not confirmed whether Jimmy Carter is still in hospice care or has been discharged. Sometimes, when a frail patient’s health stabilizes, they may be discharged.
Let’s take a closer look at hospice care and the specific circumstances that the Carters are facing.
Hospice care is available to everyone, regardless of their social status. Mollie Gurian, the vice president of Leading Age, a network of nonprofit elder-care agencies, emphasizes that hospice provides holistic care for individuals who are in the final stages of their lives. It focuses on helping them live their remaining time to the fullest, even though a cure for their terminal condition is no longer sought.
Hospice provides a team of healthcare professionals for each patient, including nurses, physicians, and social-service professionals such as chaplains and grief counselors. While home hospice services offer in-home visits, they do not provide round-the-clock or full-shift care.
To be considered initially eligible, a terminal condition must be certified by a physician. This certification is based on the expectation that the person will not survive beyond six months. Additionally, there are specific parameters for different diseases.
For-profit businesses or nonprofit agencies usually offer care and hire the providers. Medicare compensates these agencies based on a per-day rate for each patient. The Medicare program has incorporated this concept since the early 1980s, following its development post-World War II. Additionally, private insurance plans commonly provide coverage for hospice services.
According to the federal Medicare Payment Advisory Commission (MedPAC), 1.7 million Medicare beneficiaries enrolled in hospice in 2021, with a taxpayer cost of $23.1 billion. Hospice care accounted for nearly half of the Medicare patients who passed away that year.
Hospice goes beyond the misconception of being solely associated with the use of morphine to manage pain. It is not merely about providing enough medication to ease the journey towards the end. Gurian emphasized that hospice care encompasses much more than that, debunking the image of individuals being heavily sedated and confined to their beds.
Patients often choose to forego curative treatments and stop taking many medications. For instance, cancer patients may decide to discontinue radiation or chemotherapy. Individuals with advanced stages of Alzheimer’s, Parkinson’s, or other degenerative neurological diseases typically stop taking cholesterol and blood-pressure medications, as well as drugs that manage their acute symptoms.
According to Novas and Gurian, the approach to treatment varies depending on the individual case. In some cases, agencies might permit individuals with end-stage kidney disease to undergo dialysis or receive necessary medication. However, these costs would need to be covered by the individual, as Medicare typically does not provide separate coverage for such treatments.
In addition, opting for hospice care does not automatically imply giving up on treatments to address specific complications that may compromise comfort, such as administering antibiotics for a urinary tract infection or infected bed sores. However, it is important to note that in situations involving end-stage neurological conditions, patients or their families may choose to forgo such treatments.
Chip Carter, one of Jimmy and Rosalynn Carter’s four children, has confirmed to The Washington Post that his mother was battling a severe urinary tract infection when she was admitted to hospice care and subsequently passed away. In such situations, patients are given pain management medications, as explained by Novas.
Jimmy Carter’s endurance is not out of the ordinary. According to MedPAC, the average length of stay for hospice patients who passed away in 2021 was 92 days. The median stay was 17 days, which is approximately two weeks longer than the time between the announcement of former First Lady Rosalynn Carter entering hospice and her passing.
Around 10% of individuals who pass away while in hospice care have stayed for more than 264 days. These extended cases are responsible for a significant portion of the costs. In 2021, out of the total $23 billion paid, $13.6 billion was allocated to stays that exceeded 180 days before death. Among these, $5 billion was specifically for stays longer than a year.
Sometimes, hospice patients may be discharged if their condition stabilizes, especially if they have been in the program for six months. According to a report by MedPAC to Congress, 17.2% of patients were discharged in 2021. The report also highlighted that for-profit agencies tend to have longer average length of stays compared to nonprofits. Additionally, the discharge rates of living patients raise concerns about admission standards.
According to Novas, there are a few explanations for this phenomenon. She mentioned that hospice has observed an increase in the number of patients with dementia, a condition where patients can experience fluctuations in their condition over a period of months or even years. Another factor that could contribute to Jimmy Carter’s endurance is his sheer determination and resilience.
“We cannot quantify the resilience of the human spirit,” she expressed. In the face of numerous challenges, she emphasized that “someone who is determined to stay will persevere for a considerable time.”
Advocates are pushing for changes and expansion in Medicare to address the lack of a long-term care insurance provision. This is particularly crucial as the Baby Boomer generation continues to age, according to Leading Age and other advocates.
She emphasized the importance of providing such care to patients and families, as it allows them to handle the substantial responsibilities that hospitals and hospice services may not offer or are not meant to provide. In certain cases involving dementia, obtaining long-term care coverage could potentially become a more prevalent option for insured care.
Legislation has been introduced in Congress during recent sessions with the aim of establishing a comprehensive long-term care plan within the framework of Medicare. However, the political feasibility of this proposal is challenging, if not insurmountable, due to the required increase in payroll taxes that would be necessary to fund this new benefit.
Gurian also mentioned that Leading Age is advocating for an increase in hospice payment structures. This would allow more agencies to admit patients and still cover certain treatments that are currently being overlooked. As an example, she explained that some cancer patients could potentially reduce their cancer treatments as a part of pain management, rather than completely giving up on treatment. By doing so, they would be able to avoid rapidly advancing to heavier drugs like morphine, which can significantly impact their quality of life.
Jimmy Carter continues to provide valuable insights into the healthcare system and American society. According to Gurian, these two entities often present individuals with limited options when faced with a serious diagnosis: either “fighting” or “giving up.”
According to her, hospice is not about giving up; rather, it is about accepting our mortality.
Novas pointed out that Jimmy Carter has clearly demonstrated these distinctions through his public statements and actions. In November, despite his physical limitations, he made the firm decision to attend Rosalynn Carter’s funeral. Despite being in a wheelchair and having his legs covered with a blanket, his commitment to pay his respects remained unwavering.
“That was a significant moment,” Novas remarked, emphasizing the importance of showcasing what a 99-year-old looks like, even for someone as esteemed as a former president. “He continues to teach us valuable lessons. I believe, to some extent, he must be conscious of his actions… Hospice merely serves as a companion on this remarkable journey. Ultimately, it is his personal voyage.”