One year ago, former U.S. president Jimmy Carter entered hospice care at his residence in south Georgia. Since then, he has marked his 99th birthday, received recognition for his accomplishments, and mourned the passing of his wife of 77 years.

Rosalynn Carter passed away in November, approximately six months after her family revealed her dementia diagnosis. She spent her final days under hospice care, with her husband by her side.

Specialists in end-of-life support believe the divergent journeys of the Carters illustrate the extent of a commonly misunderstood assistance. These supporters praise the Carter family for illustrating the truths of growing old, developing dementia, and passing away. They also have optimism that this spotlight will inspire more people in the United States to seek out resources designed to aid patients and their loved ones during the final phases of life.

Angela Novas, the chief medical officer for the Hospice Foundation of America in Washington, expressed the significance of the Carters’ public support. She believes that their advocacy has brought attention to hospice care and encouraged people to seek more information about it.

Before Sunday, which marks the one-year anniversary of their initial announcement, the Carter family issued a statement stating that the 39th president had decided to forgo any further hospital visits and instead receive end-of-life care at home in Plains.

The statement reported that President Carter is still at his residence with his loved ones. The family is happy that his choice to enter hospice care last year has prompted numerous conversations among families across the nation on a significant topic.

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.

Let’s examine the Carters’ situation and their experience with hospice care.

Mollie Gurian holds the position of vice president at Leading Age, a national organization comprising of over 5,000 nonprofit agencies that provide care for older individuals. She defined hospice as comprehensive care for those who are embracing the final stages of their life and endeavoring to make the most of it, without seeking a cure for a terminal illness.

Hospice provides a variety of professionals for each individual, including nurses, doctors, and social workers such as chaplains and secular counselors for grief. While home hospice does include home visits, it does not offer 24/7 or full-time care.

To be initially eligible, a doctor must confirm that the person has a terminal condition and is not expected to live longer than six months. There are also specific guidelines for different diseases.

Profit-making companies or nonprofit organizations usually offer the services and hire the staff. Medicare compensates these organizations with a daily fee for every patient. There are four tiers of care with corresponding daily fees. This idea originated after World War II and has been incorporated into the Medicare system since the 1980s. Private insurance plans also commonly include hospice coverage.

According to the federal Medicare Payment Advisory Commission (MedPAC), in 2021, nearly 1.7 million individuals on Medicare joined hospice, with a cost of $23.1 billion funded by taxpayers. Nearly half of all Medicare patients who passed away in that year were under hospice care.

Gurian explains that the concept of hospice may often bring to mind the idea of a sedated and immobile individual, but it is not simply about administering morphine to ease the end of life.

Patients often cease receiving curative treatments and multiple medications. For cancer patients, this may mean no longer receiving radiation or chemotherapy. Similarly, those with advanced Alzheimer’s, Parkinson’s, or other degenerative neurological diseases may stop taking cholesterol and blood pressure medication, and eventually medications for their acute condition.

According to Novas and Gurian, the approach to treatment varies depending on individual cases. Certain organizations may permit individuals with advanced kidney disease to undergo dialysis or receive prescribed medication. However, they will have to cover the expenses themselves, as Medicare likely does not cover these treatments separately.

Additionally, hospice does not automatically imply giving up on treating certain complications that may compromise comfort, such as administering antibiotics for a urinary tract infection or infected bed sores. However, it is possible for patients or their families to choose not to pursue these treatments, particularly in situations involving advanced neurological illness.

Chip Carter, the son of Jimmy and Rosalynn Carter, told The Washington Post that his mother had a serious urinary tract infection when she was admitted to hospice care and passed away. In these situations, according to Novas, patients receive medication for pain relief.

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 period between the announcement of the Carters’ entry into hospice and the former first lady’s death.

Around 10% of individuals who are enrolled in hospice care pass away after staying for more than 264 days. The majority of expenses are driven by these prolonged cases. In 2021, out of the total amount of $23 billion paid, $13.6 billion was for stays lasting longer than 180 days before death. Of this amount, $5 billion was for stays that exceeded a year.

Some patients may be released from hospice care if their health improves, particularly if they have been enrolled in the program for six months. In 2021, 17.2% of patients were discharged. The MedPAC report to Congress highlighted that for-profit hospice agencies tend to have longer average stays compared to nonprofit agencies, and also raised concerns about the discharge rates of patients who are still alive, which may question the criteria for admission.

Novas provided clarifications, stating that hospice has observed an increase in patients with dementia, a condition where “a patient’s condition can fluctuate over the course of months or even years.” Another contributing factor, which she believes could explain Jimmy Carter’s resilience, is sheer determination.

According to her, the human spirit cannot be quantified. Despite various circumstances, those who are truly determined will persevere and remain present.

Leading Age and other advocates argue that there is a need for a long-term care insurance provision in the U.S., particularly as the Baby Boomer generation gets older. However, Medicare does not currently offer such coverage.

According to her, providing this type of care would greatly assist patients and families in handling the overwhelming responsibilities that hospitals do not offer and hospice does not include – or at least should not include. In certain cases of dementia, a long-term care benefit could potentially become a more prevalent form of covered care.

New legislation has been proposed in Congress during recent sessions to establish a Medicare long-term care program. However, due to its demand for an increase in payroll taxes to fund the new benefit, it is facing significant political challenges and may be deemed unfeasible.

Gurian suggested that Leading Age is proposing for Congress to raise hospice payment structures in order for more agencies to be able to accept patients and continue providing certain treatments that they may currently have to forego. As an example, she mentioned that cancer patients could potentially reduce the intensity of their treatments as a form of pain management, instead of completely giving up on treatment and progressing quickly to stronger medications like morphine, which can negatively impact their quality of life.

According to Gurian, the U.S. healthcare system and American culture often limit individuals with serious illnesses to only two options: “fighting” or “surrendering.”

She stated that hospice does not mean surrendering, but rather acknowledging our inevitable death.

Novas stated that Jimmy Carter has demonstrated these differences through his public statements and, in November, his resolve to attend Rosalynn Carter’s funeral despite being physically weakened and confined to a wheelchair with a blanket covering his legs.

Novas stated that it was a significant moment for the world to witness what it means to be 99 years old, even for a previous president. Despite his age, he still has valuable lessons to teach us. It’s possible that he is aware of the impact he is making. Hospice serves as a partner in this journey, but ultimately, it is his own journey.

You can find the Hospice Foundation of America’s Ask-HFA page on the web at: https://hospicefoundation.org/Ask-HFA.