06/06/2025
Such a Great topic! -On December 29, 2024, President Carter died after receiving 670 days of hospice support - impressive for a benefit written for people with a prognosis of 180 or less days. And therein is the flaw.
Now over two decades into my medical career, I've come to understand hospice care not just as an end-stage service but as a vital resource that could be accessed much earlier for most. Jimmy Carter's journey into hospice care on February 18, 2023, has served as a powerful narrative, showcasing that hospice can be a source of life-affirming care well before one’s final days.
No one can claim Jimmy Carter's life was unimpressive or devoid of accomplishment. And to that end, his death was equally noteworthy. His decision to embrace hospice care at home has brought to light both the benefits and the significant challenges we face in this field, particularly in the art of prognostication.
The Art and Challenge of Prognostication:
Determining when someone should enter hospice is far from simple science; it's a learned art fraught with complexity:
Unpredictable Illness Trajectories: Diseases like heart failure or dementia do not follow a linear path, making it incredibly difficult to predict. The human body's resilience can often defy medical expectations, and the sheer prevalence of these conditions translates to millions of lives.
• Emotional and Cultural Barriers: The resistance to discuss or accept mortality, coupled with cultural views on death, often delays the critical decision to start hospice care, potentially robbing patients and families of months where they could benefit significantly from its services.
• Systemic Limitations: The requirement for a prognosis of six months or less for Medicare coverage can be a double-edged sword. It aims to ensure hospice care is used appropriately (a warranted criticism) but often results in patients being admitted too late to fully enjoy its benefits (a dominant issue).
• Misaligned Incentives: While there are certainly organizations profiting handsomely from hospice care, the overall landscape of medical reimbursement continues to favor “doing stuff” over “doing stuff differently”.
Quality Over Quantity: Patients enrolled in hospice earlier experience better symptom management and a higher quality of life.
• Family Well-being: Early hospice allows families to prepare for the inevitable, providing them with emotional support and practical guidance which can far surpass the death of the patient.
• Life Extension: There's growing evidence that many patients on hospice actually live longer than otherwise expected, benefiting from a care model that focuses on complete, holistic well-being.
While the praise of growth in palliative services across the country is worthy of celebration, the hope of it bridging the gap between traditional care and hospice care remains varied and inconsistent:
• Fragmented Care: Palliative services often lack seamless integration with curative treatments, leading to disjointed patient care.
• Late Referrals: Misconceptions about palliative care and its affiliation with hospice (often driven from within the industry) result in late referrals, missing the opportunity to enhance quality of life during active treatment.
Advocating for Early Hospice Care:
Jimmy Carter's experience with hospice has not only highlighted the personal benefits of this support but also the broader systemic challenges. His story is a reminding and relentless call to action, urging us to reconsider when and how we engage with hospice care.
In the 20 years I’ve been a hospice provider, overall utilization of hospice has indeed improved (from 25% to 50% for predictable deaths). Such improvement has come directly from the persistent hard work of the hospice community. Since the enactment of the original Medicare Hospice Benefit some 42 years ago (1983), the "6-month prognosis" remains the backbone of the benefit. Until/unless hospice care is decoupled from prognostication and/or the difficult decision to forego “curative” therapy, suboptimal utilization of this valuable resource will persist, at avoidable costs.
Despite his vast resources, President Carter chose a path of autonomy available to each of us. Though not a choice most willingly face, and likely not one to cheer as joyful or triumphant, his choice merits respect, appreciation, and commendation from us all – R’s and D’s alike. At minimum, it removes the excuse not to talk.
