Patients and caregivers have ranked nursing homes to be the worst settings for end of life care, according to new findings from the Centers for Medicare & Medicaid Services (CMS).

The survey measured experiences in three hospice settings: nursing homes (skilled and regular facilities), home care (home and assisted living facilities) and inpatient care (acute care hospitals and freestanding hospice inpatient units).

Out of a possible high score of 100, hospice inpatient units ranked highest overall (97), followed by acute care hospitals (93) and home care (92). Nursing home care received a 90, receiving lower marks for hospice team communication and emotional support.

Nursing homes also ranked lowest on the composite ‘Understanding the Side Effects of Pain Medication,’ with a score of 71 (home care ranked about 90, hospice inpatient units 81 and acute care hospitals 74).

“We find that reported experiences of care are typically worse in the nursing home setting,” researchers write. “The field test findings support that experiences of care in freestanding hospice IPUs are rated best by caregivers.” They suggest that a lack of visits from skilled nursing staff in nursing homes led to lower scores.

This survey serves as a pilot test for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, scheduled for implementation at eligible hospices nationwide next year. CMS contacted the RAND Corporation, a nonprofit think tank, in 2012 to help develop the 47-question survey. The hope is that patients and families will have a better understanding of hospice programs before enrolling.

Thirty-three hospice programs from 29 hospice organizations agreed to participate in the pilot, and more than 1,100 patients and caregivers were surveyed.

Loretta Downs, a hospice volunteer, told Life Matters Media she believes many long-term care personnel do not understand the dying process and tend to focus only on managing chronic diseases.

“The focus is on maintaining a quality-of-life, and that does not change to a focus on palliative care and quality-of-death early enough, if at all,” she said. “Twenty-five percent of us die in long term care, and that number is projected to increase to 40 percent by 2020. Many are transferred from nursing homes to hospitals to die.”

Downs founded Chrysalis End-of-Life Inspirations, an effort aiming to help equip nursing homes with “Chrysalis Rooms,” private spaces where seriously ill patients can gather with family and friends.