Angela Novas, the chief medical officer for the Hospice Foundation of America in Washington, expressed the significant impact of the Carters being open about their experience. This has brought attention to hospice care in a different way and sparked curiosity for individuals to further educate themselves.

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.

The statement confirmed that President Carter is still residing with his family. The family is happy that their choice for him to enter hospice care last year has prompted many conversations among families across the nation about 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 take a closer look at hospice care and the situations faced by the Carters.

Hospice provides care for all individuals, including those who are wealthy and influential. Mollie Gurian, vice president of Leading Age, a network of over 5,000 nonprofit agencies for elderly care, defines hospice as comprehensive support for individuals who are embracing the end of their life and no longer seeking a cure for their terminal illness.

Hospice provides a variety of medical professionals, including nurses, doctors, and social workers such as chaplains and grief counselors, for each patient. While home hospice offers in-person visits, it does not provide 24/7 or full-day care.

The first step in qualifying is for a doctor to confirm a patient’s terminal illness, with the understanding that the patient is not expected to survive for more than six months. There are also specific criteria for different diseases.

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.

According to the federal Medicare Payment Advisory Commission (MedPAC), in 2021, approximately 1.7 million individuals receiving Medicare enrolled in hospice, resulting in a taxpayer expense of $23.1 billion. Nearly half of all Medicare beneficiaries who passed away during that year were under hospice care.

Hospice goes beyond the misconception of simply using morphine as a means to an end. While it may conjure images of a heavily medicated and immobile individual, Gurian argues that this is not the sole purpose of hospice care.

Patients often stop receiving curative treatments and taking various medicines. Cancer patients may no longer undergo radiation or chemotherapy. Patients with advanced Alzheimer’s, Parkinson’s, or other degenerative neurological diseases often stop taking cholesterol and blood pressure medication, and eventually discontinue drugs for their acute condition.

Novas and Gurian explained that treatment plans vary depending on the individual case. Certain agencies may permit individuals with end-stage kidney disease to receive dialysis or take regulatory medication, but they will have to cover the expenses themselves as Medicare likely does not provide separate coverage for these treatments.

In addition, hospice care does not automatically mean giving up on treating complications that could affect comfort, such as administering antibiotics for a urinary tract infection or infected bed sores. However, in situations involving advanced neurological disease, patients or their families may choose to forgo these treatments.

Chip Carter, the son of Jimmy and Rosalynn Carter, informed The Washington Post that his mother had a serious urinary tract infection during her admission to hospice care and passing. According to Novas, in such situations, patients are given medication to manage pain.

According to MedPAC’s calculations, 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 that former First Lady Rosalynn Carter had entered hospice and her passing. This duration of time is not uncommon for hospice patients.

Approximately 10% of individuals who are enrolled in hospice care pass away after being in the care for more than 264 days. These longer stays account for a majority of the expenses. In the year 2021, a total of $13.6 billion out of the overall $23 billion paid was for stays that exceeded 180 days before death. Out of that amount, $5 billion was specifically for stays that lasted longer than a year.

Some individuals are released from hospice care if their health improves, particularly if they have been enrolled for six months. 17.2% of patients were discharged in 2021. The MedPAC report to Congress mentioned that for-profit organizations tend to have longer stays compared to non-profits and also raised concerns about the discharge rates of living patients and the criteria for admission.

Novas provided clarifications, stating that hospice has observed an increase in the number of patients with dementia, a condition in which the patient’s condition may fluctuate over the course of months or even years. Another factor that may account for Jimmy Carter’s resilience, according to Novas, is sheer determination.

She expressed that the human spirit cannot be quantified. Despite various circumstances, those who have a desire to stay will remain for a period of time.

Advocates are calling for modifications and broadening: Medicare currently lacks a provision for long-term care insurance, which Leading Age and other proponents believe is necessary for the aging Baby Boomer population in the United States.

She stated that this type of attention would assist patients and their families in handling the heavy responsibilities of care that are not offered by hospitals or covered by hospice. In certain cases of dementia, a long-term care benefit could potentially become a more widely used form of insured care.

Recent sessions of Congress have seen the introduction of legislation aimed at establishing a long-term care program within Medicare. However, due to its requirement of raising payroll taxes to fund the new benefit, it faces significant political challenges and may be deemed unfeasible.

Gurian, from Leading Age, stated that they are advocating for Congress to raise the payment structures for hospice care. This would allow more agencies to accept patients and still be able to provide certain treatments that they currently have to forego. For instance, Gurian mentioned that some cancer patients may be able to reduce their cancer treatments as a form of pain management, rather than completely giving up treatment and progressing more quickly to stronger drugs like morphine, which can decrease their quality of life.

Gurian stated that the healthcare system and American culture often limit individuals with a serious illness to only two options: “battling” or “surrendering.”

She stated that hospice does not equate to surrender, even if it requires acknowledging our finite existence.

Novas stated that Jimmy Carter has demonstrated these differences through his public statements and, in November, his decision to attend Rosalynn Carter’s funeral despite physical limitations. He was seen in a wheelchair with a blanket covering his legs.

Novas expressed the significance of the event, stating that it was a crucial opportunity for the world to witness the impact of 99 years of life, even for a previous leader. He believes that there are still valuable lessons to be learned from the former president and that he must have some awareness of his actions. Hospice plays a role in supporting him on this journey, but ultimately it is his own path.