Over coffee the other day, my old pal The Captain was describing how he and his ailing wife were exploring the rocky terrain of palliative care. A team of specialists had been guiding them through the various scenarios and helping them draft a care plan. For someone mostly unfamiliar with the process, he said, it all felt like an act of kindness and compassion.
I felt the same way years ago, when my mother-in-law, Shirley, landed in a hospice facility following a debilitating stroke. The place exuded a sense of peace that was almost jarring after days in the hospital. It was as if we were all allowed to breathe again.
One of the few bright spots in our otherwise dysfunctional healthcare system, the hospice movement has flourished in recent years, easing thousands of patients — and their loved ones — through the dying process. But, as Christopher Rowland reports in the Washington Post, its popularity has attracted large corporate players that have altered its focus from a people-centered model to one fixated on efficiency.
“At the first meetings of our national hospice organization, we were nearly all women, mostly volunteers working on making our communities better,” hospice physician and consultant Joanne Lynn told the Post. “Once Medicare started paying for hospice, it was more men in suits, and the focus shifted to administration and sustainable financing.”
The results, according to a recent federal inspector general’s report, have not been encouraging. Citing dozens of cases between 2012 and 2016 in which patients were mistreated, the U.S. Department of Health and Human Services (HHS) noted that inspectors found at least one quality-of-care deficiency in more than 80 percent of hospices serving Medicare patients. Complaints had been filed against a third of the companies, and inspectors uncovered serious deficiencies at almost one in five providers. Across the board, for-profit hospices accounted for a higher percentage of poor performers than nonprofits.
“Over 300 hospices had at least one serious deficiency or at least one substantiated severe complaint in 2016, which we considered to be poor performers,” the agency reported. “These hospices represent 18 percent of all hospices surveyed nationwide in 2016. Most poor performers had other deficiencies or substantiated complaints in the five-year period. Some poor performers had a history of serious deficiencies.”
Among the more common issues involved poor care planning, mismanagement of aide services, and inadequate assessments of patients. In one case, a Missouri senior in home-hospice care suffered a maggot infestation of the feeding tube after staff from Vitas Healthcare skipped several visits. The company, the nation’s largest hospice chain, neither agreed with nor disputed the report, and though the Center for Medicare and Medicaid Services (CMS) threatened to remove the chain from its payment system, Vitas Healthcare subsequently drafted a plan to improve its quality of care and escaped disciplinary actions.
CMS officials responded to the report by stressing its “zero-tolerance” policy for patient mistreatment, while admitting the agency has little power to enforce its rules. “CMS does not have the statutory authority to impose remedies, such as fines, on hospices,” they told the Post. “Additionally, CMS cannot close any facility.”
That would suggest that the onus is on ailing patients and their loved ones to exercise serious due diligence when choosing a hospice provider — a reasonable expectation if there were any reliable sources of information about the performance of these companies, which there isn’t.
Medicare does operate a website called Hospice Compare, designed to help people shop for providers. But it doesn’t include any data of the sort the HHS inspection uncovered. As the Post reports, a prospective client searching the site would find that Vitas Healthcare earned a 96.4 percent quality rating, well above the national average. Nowhere would that consumer see anything about the maggot-infested feeding tube — or any other serious deficiencies.
“We live in a time when we don’t even think about going to a restaurant without checking its reviews. Why do we demand less from hospices,” deputy regional HHS inspector general Nancy Harrison noted. “The information is already collected. We just need to make that extra step and make it publicly available in a way that patients can understand.”
I didn’t have to decide where Shirley would go to die, but the hospice care was so exemplary that I wasn’t surprised that she recovered so significantly during her relatively brief stay there that she was able to move to a nursing home, where she peacefully passed away a few months later. She was one of the lucky ones. I can only hope that The Captain and his wife are so fortunate.