Director, Patient and Family Experience at V Care Hospice Services of Illinois, Northbrook, IL 60062, USAUnited States
Also available as PDF (figures and tables appear in the PDF).
I’m learning there comes a time in life – providing you are both willing and able – where you review where you’ve come. You take stock of where you’ve been. Have you made the world a better place or just endured existence from the cheap seats?
Open Journal PUBLISHERS Opinion The Dirty Business of Dying: From Charitable Endeavor to Cut-Throat Enterprise, Hospice in America is a Shameful Shadow of its Former Self * Carrie Alani, MA, RN, CHPPN* Director, Patient and Family Experience atV Care Hospice Services of Illinois, Northbrook, IL 60062, USA * *Corresponding author Carrie Alani, MA, RN, CHPPN Director, Patient and Family Experience atV Care Hospice Services of Illinois, Northbrook, IL 60062, USA; E-mail: alanipublishing@gmail.com Article information th th th Received: February 17 , 2020; Accepted: February 24 , 2020; Published: February 24 , 2020 Cite this article Alani C. The dirty business of dying: From charitable endeavor to cut-throat enterprise, hospice in America is a shameful shadow of its former self. Palliat Med Hosp Care Open J. 2020; 6(1): 5-6. doi: 10.17140/PMHCOJ-6-134 ’m learning there comes a time in life – providing you are both cousin, palliative care – have become a well-researched, evidence- willing and able – where you review where you’ve come. You based field worthy of its own subspecialty. Considered the model I take stock of where you’ve been. Have you made the world a better for quality care for people facing a life-limiting illness, hospices place or just endured existence from the cheap seats? As a nurse seeking to be reimbursed for services were mandated to use this who has committed a life’s work to easing the suffering of others, I patient-centered, interdisciplinary team to deliver care. Best of all, applaud breakthroughs that have become best practices: the World hospice agencies could now bill Medicare a daily per diem rate for Health Organization (WHO) ladder of pain control; use of the each appropriate patient. In exchange, hospices were now required pain assessment in advanced dementia (PAINAD) in non-verbal to provide care, medications, equipment and oxygen to care for dementia patients; advanced certification in hospice and palliative patients. The plan was to save millions of dollars by keeping pa- care (even in pediatrics); a myriad of ways to deliver comforting tients home, out of the high-ticket hospital and costs could be concoctions and so much more. However, the deepest and richest contained. Finally, well-meaning agencies whose true passion was treasure in the clinician’s toolbox remains the Medicare Hospice to care for those at life’s end, could be reimbursed fairly, timely Benefit.
and predictably. Good hospices used the influx of funds to expand services, raise wages for care staff and strengthen programs, even Had you been terminally ill before the mid-1980s, you adding adjuvant services, such as massage therapy, aromatherapy might have received care in your home from well-intentioned vol- and other comfort-enhancing endeavors. Ambitious agencies ex- unteers or nurses who were paid for their services through phil- panded unfunded programs, such as pediatric palliative care and anthropic means (the hospice they worked for paid them through charity care. Family and staff satisfaction surveys of hospice care donations it received from others). But that changed in 1983 with were largely positive and life – for those who cared for the dying the designation of the Federal Medicare Hospice Benefit. ‘The – was oddly good. So good, it caught the eye of big business who Benefit’ now provided Medicare beneficiaries with courage for smelled irresistible, fresh blood in a revenue stream. high-quality end-of-life care by accredited agencies. Over time, those downwind of hospice (home health The idea of hospice wasn’t new.
companies, nursing homes and hospital systems themselves) caught a whiff of something juicy and profitable. With reimburse- The United States borrowed the recipe for hospice from ment changing and regulations tightening, what better way to Europe, where the care began in the mid-1800s with terminally stack the deck but with the dying? Even non-healthcare compa- ill being cared for compassionately in homes by well-intentioned nies jumped into the fray (think RotoRooter/Chemed owning a volunteers. The cornerstone of hospice is use of an interdisciplin- hospice). Agencies, both non-profit and private, began to pop up ary team, where each member addresses an aspect of care (social like creeping vines in a jungle. Forward-thinking agencies invested worker, chaplain, medical director, etc). is paramount. Like most in hospice homes – stand-alone facilities where folks could stay things ripped off from our European ancestors, we in America feel if their symptoms were extreme or the family lost its collective the need to improve it. Over time, the field of hospice – and its marbles while caring for dying father or mother. Ironically, the re- cc Copyright 2020 by Alani C. This is an open-access article distributed under Creative Commons Attribution 4.0 International License (CC BY 4.0), which allows Palliat Med Hosp Care Open J. 2020; 6(1): 5-6. doi: 10.17140/PMHCOJ-6-134 imbursement rate for patients in a hospice home was nearly seven centers are set up to handle the waterfall of after-hours requests for times that of the daily per diem rate. The problem? The facilities, help and assistance. Patients ripe for inpatient use are shuttled to tastefully decorated and aromatherapy-infused, cost to run whether hospice homes for symptoms or family burnout – some warranted, full or empty. If every patient was adequately managed at home, some exaggerated to keep the beds full and reimbursement high. why bring them to the hospice home? Savvy leaders culled over Families gripe about low-quality products, hit-and-run visits from their census and looked for obvious targets. While most were likely haggard staffs and the results show: the soaring satisfaction surveys appropriate, the allure of the reimbursement was just too tempting of a decade ago nosedive. According to a 2019 Department of and crafty CEOs found ways to keep their inpatient hospice homes Health and Human Services (HHS) Office of Inspector General full.
(OIG) investigation this past July, hundreds of hospices across the US received ‘failing grades.’ Nearly 80% of agencies had at least Alas, American greed has led us to the demise of true hospice one significant deficiency while most had ‘…multiple failures.’ care While some facilities, their owners and staff faced crimi- I am unsure as to what and where the tipping point was. Some nal charges for care deficiencies, it’s still all about the money. Federal blame the same general economic downturn that caused General investigators have their hands full. Just one investigation in North Motors to cut 75,000 jobs in the mid-90s; others point to military Texas found more than $60 million in Medicare fraud. Multiply action in the Gulf. What I am sure of is that the tectonic plates that by countless other programs still unknown and the bill hits the on which hospice rested shifted and contorted. And in the newly- stratosphere. There goes cost savings. Woefully, the very program created spaces, leaders who had no business caring for the terminal designed to save money and care for our nation’s most vulnerable ill, suddenly found a crack, blossomed and began blocking out the openly raped and pillaged. The OIG’s answer? More over sight to sun of proper agencies. The big hospices could out-market, out- hospices is needed.
advertise and out-incentivize well-intentioned, smaller providers. Perhaps the change was initially positive. Having trained eyes on I don’t see that working, do you?
expenditures, write-offs and revenue helped many agencies capture Perhaps the greatest and saddest loss in our American hospice ex- lost monies. But, slowly, it was the bottom line driving care, not periment is the realization that capitalism – when applied to the dy- patient needs. Colleagues of mine of both non-profit and private ing – doesn’t fit. We’ve taken an honorable model of care, steeped agencies felt it like an earthquake. Nurse to patient ratios crept high- in European tradition, and killed it and watch big business dance er and higher; contracts for durable medical equipment were nego- on its grave in a red dress. While it’s anyone’s guess what end-of- tiated aggressively and things like oxygen and bedside commodes life care will look like in the next decade, it’s clear if it’s Federally hung in the balance like the market price of lobster. Cheap is king. funded, it won’t be around for long. If I’m still alive and breathing, Why buy the best gauze dressings for a wound when a patient is look me up. If I’m able, come to my house and I’ll take care of only going to live for a week? Why provide this medication or that you for free.
supplement if it’s not needed and spikes your pharmacy spend? Suddenly, coming on to hospice care meant something different: a I’ve got a big basement.
nurse who used to care for 12 patients is now carrying a load twice that. There goes the intangible value of good nursing care. Call