A quick search on Medicare’s Hospice Compare website shows more than 250 hospice agencies that serve Alabama.
It can be daunting to choose the people who will help your family with end-of-life care. The nation’s 4,000-plus hospice agencies served about 1.4 million Medicare patients in the U.S. in 2015, according to Time magazine. It’s a huge business.
But, according to an investigation that Kaiser Health News published in cooperation with Time magazine, the care that most people expect from a hospice agency sometimes disappears right when they need it most.
The investigation, which looked at 20,000 government inspection records, found that “missed visits and neglect are common for patients dying at home,” Time reported. They found more than 3,200 complaints filed with state officials in the past five years, complaints that led to inspectors finding problems in 759 hospices. One of those complaints from a woman in Alaska told a gripping story about her husband’s final hours without pain medication.
Officials with the National Hospice and Palliative Care Organization (NHPCO), an industry trade group, said stories like hers are inexcusable — but they aren’t common.
“I would venture to say whatever measure you want to use, there are an exponential number of positive stories about hospice that would overwhelm the negative,” said Jonathan Keyserling, NHPCO’s senior vice president of health policy, according to Time. “When you serve 1.6 million people and families a year, you’re going to have instances where care could be improved.”
Aim: ‘humane care’
But Amy Tucci, president and CEO of the Hospice Foundation of America, said even one story like that is too many.
“It’s like medical malpractice. It’s relatively rare, but when it happens, it tarnishes the entire field,” she said.
Hospice care began in the U.S. in the 1970s, “driven by religious and nonprofit groups aimed at providing humane care at the end of life,” Time reported. It’s available through Medicare to critically ill patients who are expected to die within six months and agree to forego treatment for a cure. Care is focused on comfort instead of aggressive medical interventions that can end up in drawn-out hospital deaths. The purpose of hospice care is to offer peaceful, holistic care at the end of life.
Most families are happy with their hospice experience, according to a recent survey by the Consumer Assessment of Healthcare Providers and Systems (CAHPS) designed by the Centers for Medicare & Medicaid Services. Many even give it glowing reviews, according to Time magazine.
But 1 in 5 respondents felt their hospice agency did not always come when they needed assistance. According to Dr. Joan Teno, a researcher at University of Washington in Seattle who has studied hospice quality for 20 years, that’s not good enough.
If you are choosing hospice care for yourself or a loved one, NHPCO suggests asking these questions when looking for an agency.
• Is the hospice Medicare certified?
Most hospices are certified by Medicare and are therefore required to follow Medicare rules and regulations. This is important if you wish to receive hospice care as part of your Medicare/Medicaid coverage.
• Has the hospice been surveyed by a state or federal oversight agency in the last five years? Ask when the last survey was and if any deficiencies were noted and if so, have they been resolved.
• Is the organization a NHPCO member and does it comply with all aspects of NHPCO’s Standards for Hospice Programs? If the hospice is a current NHPCO member, ask if it complies with NHPCO’s standards and has completed the Self Assessment and if so, how recently they completed it.
• Is the hospice accredited by a national organization?
Several organizations accredit hospices, surveying them to ensure they meet quality standards. Hospices are not required to be accredited but accreditation can be a reflection of its commitment to quality.
• Does the hospice conduct a family evaluation survey?
Many hospices ask family members to complete a brief evaluation of their services after the death of a loved one. Ask for their most recent scores so you can see how previous patients and family members have rated their services. (TAB)