'Misplaced Expectations'
Hospice industry officials note that resolving hospice complaints can be difficult during the fraught days at the end of life.
"Hospice is like any other health care provider in that there may be misplaced expectations," said the NHPCO's Keyserling.
Hospice providers must ensure that communications are clear and understood and patients and families must voice their concerns, he added. When that doesn't happen, problems can follow.
Jim Mills, 56, a retired Navy submariner from West Liberty, Ky., is still angry about the care his wife, Leeanne Mills, 54, received in the summer of 2016 at Mountain Community Hospice, then run by Hospice of the Bluegrass in nearby Lexington. She was diagnosed in 2011 with ocular melanoma and spent five years in treatment for the rare eye cancer. When all options were exhausted, the couple recalled the excellent hospice care given to Mills' father and brother-in-law.
"My wife and I saw that, so we said 'OK' " Mills recalled. "My wife wanted to die in the home that she and I lived in."
But the experience was devastating, he said. Instead of round-the-clock care for his wife, he said the hospice left him alone to grapple with her excruciating pain. He detailed dozens of alleged problems with her care, ranging from a hospice nurse who didn't respond for five hours to a middle-of-the-night call for pain medications to suspicions that use of a drug pump hastened her death.
"I'm in panic mode," Mills recalled. "I don't know what to do. I'm no doctor. I'm no nurse."
Kentucky state health officials who investigated Mills' complaint in October 2016 found "no deficient practice," records show. Mountain Community Hospice, run by the Kentucky agency now known as Bluegrass Care Navigators, also disputed Mills' version of events. Lawyers representing the agency said in a letter that care his wife received was appropriate and suggested that the trauma of loss may have colored his perceptions.
"MCH treated your wife and family with dignity and compassion throughout her hospice stay and was in no way negligent, abusive or harmful to her or your family," the letter said. "Unfortunately, emotional pain and anguish for dying patients and their loved ones are unavoidable in such tragic circumstances despite high quality and supportive hospice care."
Liz Fowler, the hospice president and chief executive, said in an email to KHN, "We are concerned when a family member has a negative perception of our care. We wish we could improve that perception."
But Mills said nothing will shake his belief that his wife was treated badly in her final days.
"There should be some clarity when a family is facing this, in whatever state it happens to be, they should know their rights, they should know what to expect," he said. "I want my wife's death and suffering to not have been in vain."
Help For Families
In a 2016 study, the OIG's Harrison and colleagues called for state surveyors to better scrutinize the plans of care hospices outline for their patients. And they recommended that CMS create a range of different levels of punishment for hospice infractions, such as requiring in-service training, denying payments, civil fines and imposing temporary management.
CMS has no statutory authority to impose those alternative sanctions, said spokesman Jibril Boykin. But it did increase transparency in August by launching a consumer-focused website called Hospice Compare that now includes hospices' self-reported performance on quality measures and, next year, will include family ratings of hospices. Until that happens, there's little information available for families trying to pick a hospice that will show up when it counts. Tucci, of the Hospice Foundation of America, suggests that families of ill or frail relatives consider hospice options before a crisis occurs. The agency recommends 16 questions families should ask before choosing a hospice.
Back in Alaska, Patricia Martin said she's still waiting for officials with Mat-Su Regional Home Health & Hospice to answer questions about her husband's poor care. She urges other families enrolling patients in hospice to be vigilant.
"It is my hope that no other family or patient will ever have to go through the nightmare that we did," she said. "If they promise you they're going to do something, they should do it."
KHN's coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.
jaleccia@kff.org | @JoNel_Aleccia
heidid@kff.org | @Heidi_deMarco
Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.
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