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Reporters’ data analysis added credibility to anecdotal evidence of hospice neglect Date: 12/20/17

Kaiser Health News reporters JoNel Aleccia and Melissa Bailey analyzed government inspection records to reveal that although U.S. hospices promise to be on call around the clock, dying patients and their families often face terrifying delays, no-shows and unanswered calls.

By JoNel Aleccia and Melissa Bailey

Our investigation of hospice care neglect began with a tip from Elisabeth Rosenthal, our editor-in-chief. Several friends of hers had dismal experiences with dying family members enrolled in hospice. The friends said they received little or no instruction or help from hospice providers – despite promises they’d be on call 24/7.

Instead, the patients and their loved ones experienced what Rosenthal termed “DIY hospice care:” boxes of medications dropped off like Blue Apron meal deliveries, cursory training before being left alone to insert a loved one’s urinary catheter. Others reported delayed responses – or no response at all – when they called hospice during a crisis.

JoNel Aleccia

Melissa Bailey

We set out to answer the question: What happens when hospice workers do not show up? To start, we turned to data collected by the Centers for Medicare & Medicaid Services (CMS), which pays nearly $16 billion to providers to give end-of-life care to about 1.4 million people each year in the United States.

Through an FOIA request, we received a spreadsheet of 20,000 records of hospice inspection reports for over 4,000 hospices from January 2012 to February 2017. Inspections are conducted by state health officials and collected by CMS.

Searching with keywords such as “agony” and “horror” as well as “neglect” and “missed visit,” we uncovered many troubling stories.

The records, while detailed, don’t identify patients, but in some instances did include dates of death and other clues. We searched death records, obituaries and other public data sources in the region where the hospices were located. From those, we were able tentatively to identify several patients. We then used public sources to identify and reach out to their family members.

We hit many dead ends. We couldn’t find the California man who said hospice workers didn’t respond for 10 hours as he frantically tried to help his dying girlfriend who was gurgling and turning blue, drowning in her own secretions.

But we did find others. We cold-called Patricia Martin of Wasilla, Alaska, whose husband, Dr. Bob Martin, waited days for pain medication as he lay dying of metastatic prostate cancer. Martin burst into tears on the phone, saying she had given up hope that anyone would care.

This anecdotal evidence was horrifying. But how often do patients get left in the lurch? That’s difficult to pin down. CMS doesn’t track such lapses and the records aren’t categorized in a way that makes it easy to count. The inspection reports, known as Form 2567s, are notoriously dense and difficult to read. So we looked at a subset of cases we could handle: the inspection reports generated from more than 3,200 citizen complaints.

That gave us 3,800 records since some investigations generated multiple citations. We divided the files in half, each reading 1,900 records. We combed through the narratives, counting all the cases where officials documented missed visits or failure to provide other promised care, including timely medication, timely treatment and bereavement services.

We found hundreds of instances of families reporting that hospice workers didn’t show up as scheduled, left dying patients for hours with no pain medication or failed to answer repeated calls for help.

All told, inspectors found fault with 759 hospices based on these complaints, including many hospices with multiple offenses. Of those, 418 were cited for the problems we targeted. That means that over half of these hospices were cited for missing visits or other services they had pledged to their patients.

That statistic doesn’t paint the whole picture: Many more cases we didn’t count were uncovered through routine inspections. The inspection database has serious shortcomings. Unlike nursing homes, hospices aren’t required to be inspected each year. Starting in 2018, they will have to be inspected every three years, but historically it has been far less frequent.

Because the inspections are so haphazard, the reports don’t give the full picture of the industry – just snapshots here and there. What’s more, about half of hospices are inspected by private accreditation groups that don’t make their inspection reports public. But our analysis gave us something to work with for an industry that has lacked oversight.

With the data analysis and several anecdotes in hand, we contacted officials from the hospices named in the complaints. Nearly all refused to comment. We reached out to hospice industry officials, who insisted such accounts were an aberration.

The response to our story was overwhelming. It was published first in TIME magazine, and republished by CNN, PBS Newshour, Huffington Post and many local and regional outlets. We heard from many readers who had excellent experiences with hospice care and were shocked to learn that such neglect occurred. We also heard from others whose experiences, sadly, mirrored those in our story.