My husband and I bought a Christmas tree on Sunday – for the first time in 10 years. We got it home, upright in the stand, and spent the evening in front of the fire reminiscing about all the changes in that time – 5 household moves for us, 4 job changes for me – and the previous several years. In particular, we remembered our mothers, who passed away in 2006 and 2013. We haven’t had a tree since 2012, in part because our spaces have been too small and in part because our grief has been too big.
Both our mothers loved-loved-loved the holidays, from Valentine’s Day to New Year’s Eve. Both our mothers, in their final illnesses, powered through with just joy and Christmas spirit keeping them upright. They both died in February. They both died in hospice care. Lovingly tended and companioned even though they both, in their ways, resisted out of sheer FOMO right to the end.
Joy and Grief in the Holidays
I share this for two reasons – first, to recognize that the holidays are often a mixed bag. Yes, there is great joy in celebrating end-of-the-year holidays within our various faith or cultural traditions; great joy in spending time with family, and hopefully getting some downtime to do it; great joy in feeling the dark of the year begin to turn its face back to the sun. But there is also a degree of stress involved, and for most mortals, a tinge of bitter with the sweet. It’s important to acknowledge that, and to allow some space for sadness and quiet amidst the cheer and frenzy. If you can, carve out a day, a half day, an hour to just be quiet and listen to your heart this season, whatever it might be telling you.
Joy and Grief for Hospice
I share this also to recognize the huge importance of the role of hospice in the passing of our mothers – and several other of our kid’s grandparents and their contemporaries, as well as several of our own. The memories we shared last night were more sweet than bitter because of hospice, because we could take comfort from knowing that our beloveds were comfortable, clean, warm, safe, and soothed as they died. These are no small things – and increasingly uncertain from even reliable hospice providers. Some of my grief this season is over the state of hospice care today.
I’ve been aware for some years of a gradual deterioration of hospice care, overall, in the U.S. I won’t enumerate the problems – they are well laid out in recent articles from LA Times and ProPublica, the latter of which bears a disturbing resemblance to an article from 2014 in Huffington Post. It is frustrating to see how, even after reforms to the hospice payment system in 2016, crackdowns on fraud in high-profile cases, Office of the Inspector General reports, publicly reported and (relatively) easily accessible quality measures, and legislation at the federal level and here in California, the efforts to improve seem to have all the impact of a broom against the tide. Too often, it’s the best, most conscientious agencies that get swept out to sea.
Defensive polemics and “it’s just a few bad apples” responses from industry media and national trade associations don’t help. Yes, journalistic conventions give an outsized view of specific instances of fraud and abuse, and it may even be true that the “vast majority providers remain true to its historic mission.” But for those that do hold tight to hospice’s core values, it’s getting harder every day and, anecdotally, the reputation of hospice is taking a not-undeserved hit.
A Few Solutions
Many bemoan and blame the presence of money in the form of for-profit entities, layered corporate ownership, and venture capital and private equity in the “healthcare space” – that’s not going to change. But something must.
Ira Byock, an influential voice and foundational member of the hospice movement, calls for the national organizations and other leaders in the field to “confront their own denial” in an article recently published in STAT. Without acknowledging the seriousness of the problem, he maintains, no progress can be made. He offers some suggestions for immediate actions while bigger, systemic solutions are pursued:
“National organizations that are leaders in the field must immediately publish explicit operational and staffing standards. They should routinely post public-facing information detailing each program’s ownership, nursing caseloads, nurse and doctor visits per patient, and more to empower people — all of us — to avoid low-performing hospice programs for our families’ care.”
That’s a start. I would add to that:
CMS must undertake more targeted, proactive investigation of “outlier” behavior, which is easily identifiable in their own claims data. (In a response to the expose article, on December 16, the Comprehensive Care Caucus of the U.S. Congress called for CMS to “immediately investigate this situation and take all appropriate steps to protect the integrity of the Medicare program and access to care for patients.” Vague, but something.)
Other states where hospice growth is rampant should consider legislation similar to California’s AB 2673, suspending new hospice agency licenses for up to 5 years, limiting other transfers or claims of license ownership, and strengthening licensing requirements, except perhaps where critical need can be demonstrated, such as in rural or underserved regions.
Individual agencies should clearly post on their own websites their corporate status, caseloads, nurse and doctor visits per patient, and a link to their Hospice Compare listings.
They should also note average and median lengths of stay; utilization of the four levels of care; percentage of patients who receive care in their private homes, nursing facilities, and other settings; case mix by diagnosis; and patient population demographics, all compared to national averages, along with a clear, plain-language explanation of what these numbers mean and how to interpret them as indicators of quality.
I would also add that entities and individuals in a position to refer patients to hospice agencies should do more to educate themselves on the relative merits of the agencies in their area and ensure that referrals are made to reputable organizations with good track records.
That’s my wish list for this holiday and the New Year . . . healing and joy for you; courage and true commitment to quality care for hospice. What’s your wish list?