Former President Jimmy Carter’s Prolonged Hospice Stay Challenges End-of-Life Care Norms

Former President Jimmy Carter‘s extended hospice experience, spanning over 16 months, defies conventional end-of-life care expectations and spotlights the complexities within this realm, experts have conveyed.

Placing Carter, who is nearing 100, under hospice care in 2023 following the choice to forego aggressive treatment for metastatic melanoma, presents a unique case in terms of longevity, noted Dr. Joan Teno, a recognized figure in geriatric care.

Teno emphasized that the former president’s remarkable survival of over five years with the disease at his advanced age reflects exceptional medical care at home and his evident determination to persevere.

The primary focus of hospice care, typically tailored for individuals with a prognosis of six months or less, centers on symptom management and prioritizing quality of life when addressing incurable illnesses, Teno explained.

While hospice services have been championed over four decades by the Hospice Foundation of America, there remains a prevalent lack of awareness and preparedness regarding end-of-life care among Americans, Angela Novas, the organization’s senior medical officer, disclosed.

Statistics indicate that over 90% of hospice patients pass away within the initial six months, with nearly 40% succumbing within the initial week post-admission, as per the National Institutes of Health‘s data.

Amidst his hospice enrollment, Carter has observed his 99th birthday, navigated the loss of his spouse of 77 years, former first lady Rosalynn Carter, and even made a poignant appearance with assistance at her memorial.

Current assessments hint that Carter might be following a trajectory characterized by progressive fragility due to metastatic melanoma, requiring substantial assistance in daily affairs and relying on a wheelchair to move around, Teno speculated.

Relaying information from recent interviews with relatives, the ex-president appears to spend most of his time in a state of rest, exhibiting signs of decreased engagement during days, she added.

In hospice care, catering to patients who are less alert and more prone to sleeping indicates they might be nearing the end of life, Teno further explained, with a considerable portion gently fading away in slumber as they pass away.

End-of-life care under hospice entails a multi-disciplinary team approach comprising various health professionals trained to address physical, psychological, and spiritual needs of individuals with terminal conditions, with dedicated support provided to family members and close caregivers.

Offering a spectrum of services like symptom-controlling medication, medical equipment, therapeutic interventions, and dietary guidance, hospice dispels misconceptions that care providers limit nutrition and fluids or hasten the dying process, according to Novas.

Amidst varying days of fluctuating health, hospice patients like Carter can partake in preferred activities and enjoy cherished pastimes while receiving personalized care within the comfort of their home, as espoused by the Hospice Foundation of America’s principles.

Amid the visibility surrounding Carter’s hospice journey, his decision to opt for end-of-life care over futile treatments underscores the vital role hospice and palliative care play in the healthcare system, Novas emphasized, dispelling myths that hospice is solely for those bedridden at the final stages of life.