On February 19, Former President Jimmy Carter stepped down from his post at Maranatha Baptist Church in Athens, Georgia, where he has taught Sunday School since the 1980s. The day before, his family announced, the president had “decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”
He may be missing Sunday School, but the president has embarked on teaching a new set of lessons for us all – lessons in facing death with acceptance and even a touch of delighted curiosity; opting for comfort care instead of disruptive hospitalizations and medical treatment with little benefit; and seeking out the gold standard of end-of-life care by choosing hospice care at home, where he can enjoy his family, visits from many friends and admirers, and by recent reports, a juggling show by his grandchildren.
On hearing the news of the president’s decision on that Saturday, I braced myself for hearing news of his death on Monday. Too often, announcements of moves to hospice care are followed within days by announcements of the person’s passing. Almost right away I started seeing news reports and social media posts referring to the President as if he had already passed.
Although unfortunate, this is not surprising. As of today – 10 days since his enrollment in hospice – President Carter has been receiving hospice care longer than do a quarter of patients who enroll. Ten more days, and he will have been in hospice longer than are half of all patients who enroll. Half of all patients who receive hospice care are enrolled for 18 days or less. Only 10% get even half of the full six months that the benefit is designed to deliver.
There are many reasons for this, some of them unfortunately “baked in” to the design of the Medicare Hospice Benefit itself: To enroll in hospice care, patients must discontinue any medical treatment designed to cure or modify the disease process, and they must be referred to hospice care by two physicians who consider that the disease, if allowed to run its natural course, will end the patient’s life within 6 months.
Understandably, patients and families often don’t want to let go of curative treatment, and physicians are reluctant to predict with certainty when someone will die! That creates a really tough “Goldilocks problem”: When is it “just right” to opt for hospice? Not too soon, or you risk getting “graduated” from hospice care and losing its many services; not too late, so that you lose the benefit of the attention to relieving pain and other symptoms, soothing stresses and fears, and supporting caregivers. (Anecdotally, I hear many more folks lamenting that they didn’t opt for hospice sooner, not that they received it for too long!)
President Carter’s brief announcement and history, as reported, provides some clues for the “just right” moment to consider hospice care:
Diagnosis of serious, progressive, chronic, or terminal illness. President Carter shared news of metastatic melanoma that had spread to both his liver and brain in 2015. While innovative treatment was successful – he was declared “cancer-free” in 2015 – cancer can recur. For many patients with serious illnesses, the benefits of treatments intended to “cure,” slow disease progression, or stave off terminal decline tend to diminish over time, while burdens of side effects and dependence on caregivers only increase.
Frequent falls and hospitalizations. News reports note that the president spent “much of 2019” hospitalized for several falls and unspecified infections. One fall required stitches; another surgery to relieve a hematoma on his brain; a third fractured his pelvis. “Boomeranging” in and out of the hospital is one of the clearest signals that hospice care may be an appropriate step.
Fractured pelvis. Pelvic fractures present an almost textbook example of the proverbial “the surgery was a success but the patient died” phenomenon. Relatively straightforward to repair from a mechanical-surgical standpoint, pelvic fractures often have devastating consequences for older patients, including infections of the surgical site or implanted “hardware,” hemorrhage requiring further surgeries and transfusions, inability to return to pre-injury abilities to manage daily life, resulting in moves to assisted living or nursing facilities, respiratory/urinary tract infections, skin ulcers and pressure sores, social isolation and circulatory problems due to reduced mobility, decreased quality of life, and “excess mortality,” i.e., death.
Put simply, a broken hip often brings down the house of cards in which many elders live.
Advanced age and frailty. The president and his indomitable wife Rosalyn have seemed nearly indestructible, appearing in hard hats and tool belts on Habitat for Humanity sites as recently as 2021. In their mid-90s, they have seemed as hale as many in their 60s and 70s – and yet, with advancing age comes frailty – signaled by the falls, hospitalizations, and the decreasing ability to fight off infection, tolerate surgery and in-patient hospitalization, or even bounce back from otherwise minor illnesses.
This combination of factors – serious illness, frequent falls and hospitalizations, a broken hip, and advanced age – are an almost perfect “recipe” for hospice care. Any one of them alone for any person could justify a hospice evaluation. Hospice evaluations can be requested directly from hospice agencies or through a treating physician. Hospice enrollment doesn’t mean “giving up”; it means giving yourself and your family the gift of comfort, time, and support over what should be weeks or months, not just days, at the end of a person’s life.
We wish President Carter and his family all the best and thank him for his exquisite lessons in how to live and how to die.
[1.] NHPCO Facts & Figures, 2022 edition. https://www.nhpco.org/hospice-care-overview/hospice-facts-figures/
[2.] Henry, S.M., et al., (2002). Pelvic fracture in geriatric patients: A distinct clinical entity. Journal of Trauma, 53: 15–20; Schmitz, P., et al. (2019). Patient-related quality of life after pelvic ring fractures in elderly. International Orthopedics, 43: 261–267; van Dijk, W.A., et al. (2010). Ten-year mortality among hospitalised patients with fractures of the pubic rami. Injury, 41: 411–414; Hill, R.M., et al. (2001). Fractures of the pubic rami. Epidemiology and five-year survival. Journal of Bone and Joint Surgery, British volume, 83: 1141–1144.