Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families

The for-profit hospice industry has grown, allowing more Americans to die at home. But few family members realize that “hospice care” still means they’ll do most of the physical and emotional work.

Maria Fabrizio for WPLN

“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnston, who relocated to New Mexico at age 40 to care for her dying mother some years ago. She ended up writing an essay about her frustrations with the way hospice care often works in the U.S.

Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says that during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.