One year ago, President Jimmy Carter made the important decision to transfer to hospice care, rather than continue the cycle of intermittent acute-care hospitalizations that kept him away from home and apart from his dear wife Rosalynn. Not only was this a highly personal decision for him and his family, but it also began an important public conversation about hospice, a type of care that few want to discuss or openly embrace. As one expert noted, “People have been trying for years to raise awareness of hospice. But it’s marketing something no one wants to buy- or at least talk about.” Carter, our longest-living President, under whose tenure the pilot program for our modern-day hospice began, is now on another record-breaking path: His stay in hospice for over one year is a unique example of using the hospice program not only to help you die but to live in dignity and with symptom management for however long you may have with a terminal diagnosis. His wife Rosalynn, who died in November 2023, was also a hospice patient. But her time in hospice was approximately 2 days, a much more common experience in that about 25% of hospice patients enroll in the week leading up to their deaths.

So it’s a good time to review some of the data and basics about hospice in the United States and to examine what it means for someone to live a full year under hospice care. First, a few basics: The most common and usual form of hospice care involves pain and symptom management from a multidisciplinary team for someone who has been diagnosed by a physician to have a prognosis of 6 months or less and who has decided to no longer try curative treatments. The goal is to support the patient and her family and to allow the patient to have dignity and the best quality of life she can in her final days. Most hospice care is delivered wherever the patient lives (including a long term care facility) though some hospitals have a few designated hospice beds for acute symptom relief, and there do exist a few free-standing hospice facilities around the country. Half of all Medicare beneficiaries who die each year do so while enrolled in a hospice program. In 2018, 61% of Medicare hospice patients were 75 years old and older, though people of all ages can enter hospice and most private insurers will also pay for hospice, along with Medicare and Medicaid. 

How long do people typically spend in hospice before their deaths? According to a recent post in USA Today, with 1.5 million people entering hospice each year in the US, half of those individuals die within 18 days of admission, and one in 10 die within their first two days, which is what Rosalynn Carter did. The median stay in hospice is only 17 days but the average stay is 92 days, which means some outliers are spending many months in hospice. (click here to understand the difference between median and average). President Carter is truly an outlier, with only 6% of hospice patients alive after the one-year mark. It is thought that the ideal length of time in hospice is at least 3 months, so that the patient and family can truly benefit from all that hospice has to offer. When patients enter hospice, they have been medically assessed to have a prognosis of 6 months or less of life left. Patients are re-evaluated after the first 90 days, and then every 60 days after that to document that the patient remains eligible and continues to have a prognosis of 6 months or less to live. Ironically, because hospice can reduce pain and ameliorate difficult symptoms, patients often are stabilized and end up living longer than was anticipated, which could in some ways jeopardize their continued stay in hospice. There is research to demonstrate that hospice care may in fact increase life expectancy. In 2021, the data show that 17.2% of hospice patients were discharged because their conditions stabilized and it was no longer possible to predict their deaths within 6 months.

So the question then becomes, can you outlive your hospice eligibility? Can you be forced to leave hospice because you’re doing so well? Clearly, that can happen. While hospice can do so much more than is possible if someone is only in the system for a few days, the challenge is determining who would benefit from hospice and at what stage in their illness. While hospice was originally designed to meet the needs of cancer patients, today, the majority of diagnoses under hospice care include such non-cancer illnesses as dementia or cardiovascular disease, for which it’s much harder to predict when the last 6 months of life are anticipated. In fact, the way that hospice is paid for doesn’t really work for patients whose life expectancy is harder to predict, even if they are in the late stages of their illness. This is especially true for people with dementia, which was the predicament of Rosalynn Carter. 

There is data to demonstrate that hospice care can not only be supportive of an excellent quality of life as one nears the end, but it can also save the Medicare system money, as patients don’t make expensive ambulance trips to emergency rooms or spend countless days in an ICU setting for costly treatments that are likely to fail or that are not in keeping with what the patient would have wanted. Indeed, a study last year determined that patients on hospice saved the Medicare program approximately 3.1% in last-year-of-life costs, in comparison to those Medicare beneficiaries who were not on hospice. This even held true for patients in hospice for 6 months or longer. While cost savings are not the goal of entering hospice (and there are many problems to this day with some hospice programs) these reports do suggest that conversations about what patients want as their lives come to a close may not only lead to a type of care preferred by patients and their families, but may also lead to a more solvent Medicare program, which currently spends enormous amounts of money for patients in the last year of life. 

To think more about hospice for you or a loved one, take a look at the resources here, here, and here. And to locate a hospice program in your area, click here and here. And to President Carter, we wish him all the best for as long as his life continues.