To the Editor:
Re “Our Hospice System Subverts the Very Point of Hospice Care,” by Sandeep Jauhar (Opinion guest essay, March 7):
Dr. Jauhar highlights a painful and urgent truth: When systems prioritize efficiency, profit or protocol over presence and humanity, hospice risks losing its soul.
This concern is not new. In 1972, just as hospice was being established in the United States, my mother, Elisabeth Kübler-Ross, warned Congress about precisely this danger. In testimony before the U.S. Senate Committee on Aging, she cautioned that if care for the dying became medicalized, bureaucratized or driven by institutional interests rather than by compassion and human connection, we would undermine the very philosophy hospice was meant to embody.
My mother understood that hospice was never intended to be merely a service delivery model. It was — and must remain — a philosophy of care grounded in dignity, honest communication and accompaniment. The dying are not problems to be managed. They are people to be met, heard and supported.
When hospice becomes constrained by financial incentives or regulatory pressures that distort clinical judgment, we stray from its founding principles. The question before us is not simply how to reform policy, but how to restore intention. Hospice should not be optimized; it should be humanized. We must recommit to the core values that gave birth to the movement: compassion, presence and respect for the whole person.
My mother foresaw this crossroads more than 50 years ago. We would do well to listen today.
Ken Ross Phoenix The writer is the president of the Elisabeth Kübler-Ross Foundation.
To the Editor:
My 102-year-old mother entered into hospice three months ago. While the hospice personnel were caring and professional, I realized that my mother’s care as she moved toward death would require more than our emotional support. We became experts in the two-person transfer to the toilet, administering medications and treating bed sores. All this 24 hours a day.
The hospice setting was exactly what my mother and we desired. However, the hidden assumption that her family would act as her primary caregivers showed that this system is flawed and not available to all who want it.
It is clear that my mother’s death at home was far less expensive than it would have been in a hospital. Some of those insurance savings should be allocated to provide more professionals available to support family caregivers.
Susan Jeffords Palm Springs, Calif.
To the Editor:
As a college student preparing to become a physician, I have spent nearly two years visiting hospice patients in homes and an inpatient unit and shadowing palliative care physicians. Sandeep Jauhar points out real systemic issues in hospice. Yet as I’ve seen firsthand, his story also reflects how families often don’t understand what hospice entails, and that many physicians don’t know what active dying looks like or how to manage end-of-life care.
But I’m hopeful, because there are hospice organizations that we can turn to for a model of compassionate end-of-life care. I volunteer with a nonprofit hospice that assigns a physician, nurse, chaplain and volunteer to each patient, operates a 24-hour support phone line, offers grief services to families and works closely with the local hospitals to ensure smooth transitions back home or to the inpatient unit.
This kind of care centers hospice on comfort, dignity and knowledge — not pain, profit and confusion.
Ryan Lee Providence, R.I.
To the Editor:
As Sandeep Jauhar’s essay makes clear, dying at home is hard. But that is not the fault of hospice. Hospice can be of great help to the dying and their families, but it was never its purpose to provide all the necessary services.
I cared for my mother, my husband and my mother-in-law when they were dying, and I found hospice a wonderful source of help and support.
Since I could afford to pay for services, I did not expect the government to provide them for me. I had excellent advice from the hospice, and my husband found great comfort in having them be a part of his dying. They also provided him with the knowledge that helped him accept his mother’s death.
Dr. Jauhar’s point about dying being hard shouldn’t also be a diatribe against a service that provides such comfort and solace. The government cannot underwrite all medical expenses when people can afford them. We do need to care for those who cannot care for themselves, but it is not feasible to expect the government to preserve a person’s assets.
Barbara Grossman Chapel Hill, N.C.
To the Editor:
Sandeep Jauhar’s essay describes a family’s difficult experience with hospice, but it risks leaving readers with a misleading impression of how hospice care works for most patients.
Hospice is designed to provide interdisciplinary, patient-centered care focused on comfort, dignity and quality of life. Teams typically include nurses, physicians, aides, social workers and spiritual counselors who collaborate with patients and families to develop individualized plans of care.
While hospice does rely on family or caregiver participation in the home setting, hospice teams provide extensive education, guidance and support to help families navigate that responsibility.
For patients without caregivers or for families who need additional help, hospice programs can coordinate other resources, including respite care, inpatient care for symptom crises and referrals for additional support services.
The goal of hospice is not to shift responsibility onto families, but to honor a person’s wishes — often the deeply held desire to remain at home, surrounded by loved ones, during life’s final chapter. When supported by experienced hospice teams, dying at home can offer dignity, comfort and deep connection.
Amy Jablonski Old Bridge, N.J. The writer is the vice president for hospice services at the Visiting Nurse Association Health Group.
The post The Hidden Burdens of Hospice Care appeared first on New York Times.
