By Cheryl Clark
The Centers for Medicare & Medicaid Services was scheduled to roll out a refresh of its Hospice Compare database, the latest among its websites scoring quality in health care settings.
The data should have been available by late November, but technical issues delayed the release until Dec. 12.
Despite that delay, this is a good time for stories about end-of-life care that readers might discuss with family members during the holidays. Coverage can explore what the federal measures show – and what they don’t but should – for the nearly 4,500 hospices across the country.
Why does this matter?
It is important to measure the quality of care for these services because, except for some patients fortunate enough to have been mistakenly declared terminal (a story in and of itself), there are no do-overs in the death process.
As unseemly as it might be to talk about, people do not want to suffer through painful constipation, a common side-effect of opioid medications and one properly remedied by better hospice care, especially in their last days of life. Nor do they want to be fighting shortness of breath.
Another important point is that these scored services – which usually take place in the dying patient’s home – are reimbursed by Medicare, which paid nearly $16 billion in 2015 on behalf of nearly 1.4 million beneficiaries. The public deserves to know what it is getting for its money.
Lower expectations
From the get-go, don’t expect much variation between the first seven measures posted on the website as of the first rollout on August 16 and the ones in the next update. The hospices all look a bit too much like those in a proverbial Lake Wobegon.
According to the Medicare Payment Advisory Commission, three-fourths or more of the hospices scored at least 91 percent on six measures now in use:
- Patients or caregivers asked about treatment preferences like hospitalization and resuscitation at the beginning of hospice care.
- Patients or caregivers asked about their beliefs and values at the beginning of hospice care.
- Patients checked for pain at the beginning of hospice care.
- Patients checked for shortness of breath at the beginning of hospice care.
- Patients who received timely treatment for shortness of breath.
- Patients who taking opioid pain medication and were offered care for constipation.
The most variation was found in a measure that scores hospices on whether patients received a timely and thorough pain assessment when pain was identified as a problem. Some 1,012 of the companies providing the service scored at least 90 percent, 907 scored below 70 percent, and 1,377 reported no data at all.
The data currently online is based on hospice services provided between Oct. 1, 2015 and Sept. 30, 2016. The refresh, when it finally takes place, should include services between Jan. 1 and Dec. 31, 2016.
More measures reportedly will be added beginning in February, which is discussed farther down in this tip sheet.
Getting the data
So how do you see how hospices in your area scored and whether there was any quality variation?
You probably don’t want to be calling up dozens of individual hospice pages and writing down each of the seven scores – prone to error and can take forever. Here’s an easier way using a spreadsheet program such as Excel:
- First, go to the Hospice Compare website’s home page to the blue box on the far right that says “Additional Information” and click on “Download the database,” and then “download CSV flat files (revised) now.”
- Place in an easy to find location, like your desktop. You will see a zip file titled “Hospice_Compare_-_Revised_Flat_Files.zip” and when opened, there’s a folder called “Hospice_Compare_-_Revised_Flat_Files.”
- Make a working copy of the folder and use that for sorting; make sure to rename it to retain the original exactly intact.
- In your working folder, click on the 20 MB file entitled “Hospice Compare – Provider data.csv.”
- Use the sort tool to arrange the database for your city, county or state, columns E, H or F.
- Copy all hospices in your selected region and place in a new file. Make sure to copy the column headers and make sure they are over the right columns.
- Sort again for “Measure Name,” under column L. You will see the scores for “beliefs & values” first, followed by scores for “Hospice and palliative care dyspnea screening” and so on.
For the story I wrote for inewsource/KPBS in San Diego County, I created a separate file for each measure so I could again sort for range among the 27 companies scored. For example, the widest variation in care was, as it was nationally, in the assessment of pain, with the poorest performing provider at 48.3 percent, and a high performer with 97 percent. Nearly a dozen scored under 70 percent.
It is helpful to partner with someone who is comfortable working with data. For me, that was inewsoure data and visuals editor Brandon Quester who put the data in a searchable format in the inewsource version of the story.
Pro tip: Always double check a sample of scores with their corresponding hospice’s quality pages to make sure you sorted correctly.
Caveats and data limitations
Hospice companies “voluntarily” report their data to CMS, so Hospice Compare users must rely on their integrity. But some hospices report under duress and those that fail to report receive a payment reduction of 2 percent for that year. In the Aug. 16 launch of the data, no data was shown for nearly a thousand, or more than a thousand hospices depending on the measure, although the reasons why varied. Some had numbers that were too small for statistical reliability while some may have opted to suffer the payment penalty.
CMS officials have not been specific on whether or how they are auditing those submissions. It also is not known whether CMS plans to adjust hospice payment based on quality scores, as it does for hospitals.
The hospice quality program, by the way, was authorized by Section 3004 of the Affordable Care Act. I like to point that out in my stories to help readers understand that the ACA does a lot more than just expand health insurance coverage.
Some reporters like to compare quality scores between for-profit and not-for-profit hospices. The CMS website shows this.
What’s next?
Which brings me to the future.
Currently, the measures are all process measures, those that attempt to rate how well providers follow policies that reasonable evidence suggests should result in better quality of care. CMS has said that in the future it wants to include outcome measures such as whether a patient continued to experience pain after it was recognized and treated.
In the Hospice Compare update now scheduled for Feb. 20, CMS is expected to add survey responses that further explore the quality of the hospice experience. Topics include team communication, timely care, respect for family members, emotional and religious support, help for symptoms, hospice care training, rating of hospice care and willingness to recommend.
These survey now is being distributed by an authorized, independent survey company that hospice providers must hire, similar to the surveys now distributed to discharged hospital patients. The respondents in this instance are key family members who witnessed the hospice services.
CMS also has plans to add two additional quality measures for hospice care. The first relates to the percent of patients who received a visit from a registered nurse, physician, nurse practitioner or physician assistant in the last three days of life, and second, the percent of patients receiving at least two visits from a social worker, chaplain or spiritual counselor.
The agency has discussed adding star ratings for hospices as well. Officials expect a public release of those measures late next year, although the agency has been known to change its mind.
More measures
In writing about quality, it’s important to mention that the topic of measurement accuracy is controversial and hospice care is no exception.
Many hospice providers and researchers have problems with the measures currently being used.
For example, Dr. Joan Teno, a national hospice quality expert at the University of Washington and who has written about hospice quality in a recent issue of Health Affairs, criticized the pain screening and pain assessment measures. Teno contends that they don’t address the actual endpoint: whether the pain was brought under control. The same problem with shortness of breath: the measures score whether patients were assessed for shortness of breath and whether treatment was initiated, but not whether it resolved symptoms.
“CMS has more work to do to really provide actionable information for consumers to select a hospice program,” she said.
One encouraging sign is the planned public reporting of the survey responses, which Teno said will give families and caregivers much more information to guide their choices of hospice providers.
“Talk with any family member who is at the bedside of a dying patient who does not get adequate pain control or who was not treated with respect. They would argue those are very important outcomes,” she said.
When quality scores affect a provider’s Medicare reimbursement, CMS generally uses measures that are vetted and endorsed for use in determining payment and public reporting by the CMS-funded National Quality Forum. The new measures can be searched here.
CMS sometime in December is expected to send to the NQF its “Measures Under Consideration” list (affectionately called the MUC), which is more than 100 ways of looking at care quality that could be used for public reporting or payment in various settings.
Other measures have been suggested, such as one that evaluates how many patients were discharged from hospice services alive, meaning that they no longer receive hospice services.
According to the March MedPAC report, the percentage of a hospice’s live discharges “could be considered an outcome measure” for hospice quality because “providers with substantially higher rates of live discharge than their peers signal a potential problem with the quality of care or program integrity.
“An unusually high rate of live discharges could indicate that a hospice provider is not meeting the needs of patients and families or is admitting patients who do not meet the eligibility criteria,” the report said.
Some patients also may revoke their hospice service because of a provider’s business practices or quality of care, the report said.
Of course, live discharges may occur for understandable reasons; some patients honestly diagnosed with a terminal illness may turn out not to have that condition and no longer qualify for hospice. Others may seek a transfer to a different hospice to be closer to family.
Hospice utilization data is complicated, but you can download the last two years here.
Dr. Karl Steinberg, who sits on the National Quality Forum standing committee (which debates and approves end-of-life measures for use in healthcare settings), suggests two additional measures that could add value: whether the patient died in a preferred location (at home instead of in a nursing home perhaps), and whether the hospice increased the frequency and intensity of visits and services in the days before a patient died. He is medical director at a for-profit hospice in San Diego County.
Measure What Matters, a group organized by the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, offers this top ten list of measures it prefers. It includes whether the hospice assessed and treated nausea and vomiting, and documented names of surrogate decision-makers.
One way to localize your story is to ask readers who have experience with hospice for a family member what measures they would like to see added to the scorecard, or ask hospices and palliative care providers about their preferences, which may indicate problems unique to your region.
For example, I am aware of one family that felt members of their hospice team tended to cross a line by insisting family members leave the room during sensitive moments, or exerted authority in ways that felt overbearing. Hospice nurses in those cases were seen as strangers entering the home, insensitive to family routines. In my experience talking with families, however, those sentiments are rare and families are usually grateful for the presence of skilled hospice personnel.
Another family member I talked with complained that hospice providers, who are paid a daily rate whether they visit the home or not, came infrequently and when they did, did not stay very long or respond to certain requests.
While those concerns may or may not be valid, it is important to try to reach people who have had the experience.
Additional resources
- CMS details on hospice provider requirements.
- My MedPage Today story, “Most Hospices Fare Well in Newly Released CMS Quality Data.”
- Other members of the Medicare “Compare” family include:
- Inpatient Rehabilitation Facility Compare, Long-Term Care Hospital Compare, Hospital Compare, Physician Compare, Nursing Home Compare, Medicare Plan Finder, Dialysis Compare and Home Health Compare.
Sources
Here are experts who can help you prepare for a hospice story. And by all means, please feel free to contact me by e-mail with questions:
- Dr. Joan M. Teno, M.S., professor of medicine, Division of Gerontology and Geriatrics at the Cambia Palliative Care Center of Excellence, University of Washington: jteno@uw.edu
- Dr. Karl Steinberg, medical director of Hospice by the Sea in Solana Beach and a member of the National Quality Forum standing committee that debates and approves end of life measures for use in health care settings: Steinberg.karl@scrippshealth.org
- Carol Spence, vice president of research and quality for the National Hospice and Palliative Care Organization (NHPCO). Contact her via Jon Radulovic, NHPCO vice president for communications: 703-837-3139 or 703-837-3139.
- Mary Zalaznik, senior vice president of VITAS, a for-profit company with more than 30 hospices measured on Hospice Compare: office: 305-350-4359; mobile: 786-213-7382; Claudia.Quintana@vitas.com.
- Dr. R. Sean Morrison, co-director of the National Quality Forum Palliative Care and End-of-Life Care Endorsement Maintenance Steering Committee and professor of geriatrics and medicine at Brookdale Department of Geriatrics and Palliative Medicine at the Ichan School of Medicine at Mount Sinai: 212-241-1466, mailto:sean.morrison@mssm.edu.
Cheryl Clark writes for inewsource, a nonprofit media organization in partnership with KPBS in San Diego, and New York-based MedPage Today, which circulates to health providers nationally.
