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It’s been a year since Jimmy Carter entered hospice care at his home in south Georgia. In that time, he has had his 99th birthday, had tributes paid to his memory, and lost his wife of 77 years.

Rosalynn Carter died in November, about six months after her family announced that she had dementia. She had only a few days of hospice care, and her weak husband was by her side the whole time.

There are many different ways to get end-of-life care, as the Carters’ journey shows. These supporters commend the Carter family for showing the realities of aging, dementia, and ultimately passing away.

They hope that the attention brought to the Carters will encourage more Americans to seek services that can support patients and their families in their final years.

CEO of the Hospice Foundation of America, Angela Novas, stated that the Carters’ public journey has been significant. It has shed new light on hospice care and raised important questions for people to learn more about it.

The Carter family released a statement before the anniversary of their announcement that the 39th president would not be going to the hospital again and would instead receive end-of-life care at home. They expressed their satisfaction in sparking nationwide discussions on this important subject.

To clarify, Jimmy Carter’s family has not disclosed whether he is still in hospice care or has been sent home. Sometimes, weak patients’ health improves, and they can be discharged.

Hospice care is available to everyone, regardless of their social status. Leading Age, a national network of nonprofit groups that care for older individuals, describes hospice as holistic care for those who are trying to live their final days as fully as possible, without seeking a cure for a terminal illness.

Hospice provides a team of professionals, including nurses, doctors, social workers, and grief counselors, to assist each patient. In-home hospice care involves periodic visits, rather than round-the-clock care. To qualify for hospice care, a doctor must certify that the person has a terminal illness with a life expectancy of six months or less.

Hospice care is usually provided by for-profit businesses or nonprofit organizations. Medicare and most private insurance plans cover hospice care costs. In 2021, 1.7 million Medicare recipients signed up for hospice care, costing taxpayers $23.1 billion. Nearly half of the Medicare patients who died that year were under hospice care.

Many people associate hospice care with heavy medication and bedridden patients, but Mollie Gurian of Leading Age clarifies that it’s not just about administering morphine to ease pain.

Patients in hospice care often stop pursuing treatments and medications that aim to cure their illness. This includes stopping radiation or treatment for cancer, discontinuing cholesterol and blood pressure medicines, and no longer managing severe conditions.

However, each case is unique, and some patients may still receive treatments based on their specific circumstances. For example, a patient with end-stage kidney disease might be permitted to continue dialysis or take certain medications. It ultimately depends on the patient’s needs and preferences.

Hospice care also encompasses addressing issues that affect the patient’s comfort, such as medication for infections or bed sores. Nonetheless, patients and their families can choose to forgo such treatments, especially if the patient’s condition has reached its final stages.

According to the federal Medicare Payment Advisory Commission (MedPAC), the average length of stay for hospice patients who died in 2021 was 92 days. The majority stayed for around 17 days longer than the period between announcing Mrs. Carter’s admission to hospice care and her passing.

About 1 in 10 people in hospice care are there for more than 264 days. Prolonged stays like these account for most of the costs. In 2021, $13.6 billion of the $23 billion paid for hospice care went toward stays longer than 180 days before death. Of that, $5 billion went to stays longer than a year.

In certain cases, patients may be discharged from hospice care if their health improves, especially after being in the program for six months. In 2021, 17.2% of patients were sent home. However, a report to Congress by MedPAC expressed concerns about the admission standards, as for-profit hospitals tend to have longer stays compared to charity hospitals.

Angela Novas suggests that the increase in dementia cases is one reason for longer hospice stays. She also adds that a patient can have fluctuations in their condition over months or even years. She believes that Jimmy Carter’s resilience cannot be measured, stating that someone who has the will to stay will prolong their time.

Leading Age and other advocates argue that the United States needs long-term care insurance, which is not covered by Medicare. As the Baby Boomer generation ages, this type of care could provide coverage for services that are not included in hospital care or hospice care. This is particularly relevant for individuals with dementia, who often require specialized care.

Proposals have been made in Congress to include long-term care coverage in Medicare. However, it is challenging to pass such legislation, as it would require raising payroll taxes to fund the new benefit.

Additionally, Leading Age aims to change the payment structure for hospices, allowing them to provide more treatments that are currently not covered. For example, cancer patients could gradually decrease their treatments to manage pain instead of abruptly stopping and resorting to strong medications like morphine, which can have adverse effects on quality of life.

Gurian emphasizes that the U.S. healthcare system often limits individuals with serious illnesses to only two options: “fighting” or “giving up.” She wants to change this mindset by highlighting that hospice care is not about giving up; it’s about accepting our mortality.

Angela Novas credits Jimmy Carter for demonstrating these nuanced differences through his public statements and his decision to attend Rosalynn Carter’s funeral, despite his own health struggles. His determination and spirit are an inspiration to many.

The Carters’ story has sparked conversations about end-of-life care and the importance of planning for the future. By sharing their journey, they have encouraged families across the country to have discussions about this important subject.