Is At-Home Hospice Care a Benefit or Burden for Families?A cardiologist described his experience with at-home hospice care for his father, inspiring a debate on hospice’s true purpose
In March 2026, Dr. Sandeep Jauhar wrote an opinion essay for the New York Times describing his family’s candid experience of his father receiving at-home hospice care. His piece sparked […]
In March 2026, Dr. Sandeep Jauhar wrote an opinion essay for the New York Times describing his family’s candid experience of his father receiving at-home hospice care. His piece sparked a larger conversation about whether America’s hospice system, particularly for at-home patients, is living up to its original purpose.
The Reported Issue of At-Home Hospice
Jauhar, a cardiologist, painted a picture of what his family faced during his father’s final days as his Alzheimer’s reached the end stage. While his family is composed of many physicians, they found themselves surprised and overwhelmed at how much responsibility is placed on the families themselves instead of the hospice team. He mentioned having to bathe their father, manage his medications and more with very little hands-on help from nurses or other external caregivers on the hospice team.
Additionally, Jauhar noted that Medicare budget limits to hospice agencies are the root cause of the problem.
“In 2024, the average per-patient Medicare payment to hospice agencies was about $200 a day, with an annual cap of $33,500. That outlay would barely pay for a part-time aide, yet it is also needed to cover medications, medical equipment and nurse visits. So hospice agencies are forced to shift the bulk of responsibilities to families as the dying process unfolds over weeks or months,” Jauhar wrote.
Jauhar called for increased funding to hospice programs, a minimum guaranteed number of aide hours per week and other changes that would reduce costly hospitalizations for hospice patients.
The Responses to Jauhaur
There was a profound response to the opinion essay. The New York Times published additional letters to the editor from a wide variety of viewpoints. Among them was Ken Ross, son of Elisabeth Kübler-Ross, the pioneering psychiatrist who helped shape the modern understanding of death. He echoed his mother’s belief that hospice should not become medicalized or profit-driven.
Another response came from a California woman who described caring for her dying mother around the clock, mastering skills such as two-person transfers, treating bedsores and more. She argued that financial savings that hospice generates for the healthcare system should be redistributed to families.
A pre-medical student also offered his opinion that not all hospice agencies are alike. He volunteered for a nonprofit hospice with a model that provides a full team to each patient, including physicians, nurses and volunteers.
A Response From Barbara Karnes
Barbara Karnes, the author of “Gone From My Sight: The Dying Experience,” also wrote a separate response. As an end-of-life care advocate who described herself as having helped “raise” the hospice care system as it is today, she offered her opinion on Jauhaur’s essay as well. While she admitted that the current American hospice system has significantly shifted from its original vision, she argued that he and other families may have a misunderstanding of the purpose of hospice.
Karnes explained that hospice was never meant to replace a caregiver, nurse, or family’s role in providing at-home support for a patient at the end of their life.
“Hospice is meant to guide and support the family or caregivers in providing that care. Hospice does not take the place of a caregiver. It advises, teaches, monitors and provides essential medications and home care equipment,” Karnes pointed out.
The Future of Hospice
Jauhar’s essay and the responses to it show that the hospice system is at a crossroads in terms of its purpose and role in a dying person’s life. Both sides come to the agreement that for-profit systems and budget cuts to Medicare often significantly affect a patient’s quality of care. Hospice is meant to support and guide patients and their families at the end of their lives; how far that support is supposed to go, particularly at home, remains a point of contention.
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