The morning my loved one cried out in uncontrolled pain, we did what hospice tells families to do: we called the nurse. And we waited. Eight hours passed. We left messages. We explained there was a pain crisis. We described escalating symptoms. When we called requesting a nurse during moments of visible distress, we were told staff could not come for three hours because they were getting their children ready for school. Another time, we were told a staff member was out to dinner. On a third occasion we were told that the patient’s primary case manager RN, the same nurse getting her kids off to school, would be unavailable for several more hours. No one responded adequately until we threatened to report the hospice to the authorities.
This took place in Los Angeles County, California. My family enrolled our loved one with a for-profit hospice in Whittier, believing what most families believe, that hospice will provide comfort, dignity, and responsive medical support for their end of life. What we experienced was something very different.
Medications meant to address severe pain were not delivered for approximately 48 hours after we were told they were necessary. During that time, our loved one remained in distress. Nurses were consistently vague about their visiting schedules. We were never given clear expectations about when someone would be available in an emergency. Each call left us feeling as though we were asking for too much when all we were asking for was relief from suffering.
Why New York must stop for-profit hospices
What this hospice didn’t realize was that their tactics of stalling and delaying care were not going to work with my family. I serve as the president and CEO of United Hospice, a nonprofit hospice organization serving Rockland and Orange Counties in New York. Unlike California, for-profit hospices have not yet flooded the market of care in New York State, and there is currently legislation being debated in Albany that would guarantee they never could — S.9196. It is troubling to fathom how many families are experiencing fraudulent care in California without even realizing their loved one’s last days are being monetized by predatory business owners in an industry that was never meant to operate for profit.
Due to my loved one’s condition, we had no choice but to use the most easily accessible hospice available to us. That meant going to one that operates as a for profit entity, despite my hesitations. If we had been able to choose, I would have never gone to a for-profit hospice. For-profit hospices have been proven to provide a narrower range of services, use less skilled clinical staff, and have higher rates of complaint allegations and deficiencies. They also have been found to provide 10% fewer nursing visits, 35% fewer social worker visits, and 50% fewer therapy visits to their patients than nonprofit hospices do.
Hospice care is not a luxury service. It is a Medicare-funded medical benefit designed to prevent exactly this kind of scenario: a patient in a documented pain crisis without timely medical intervention. According to federal guidelines, hospice providers are required to ensure that nursing services are available on a 24-hour, on-call basis. Families should not be left managing uncontrolled symptoms alone for hours while waiting for a response. Unfortunately, when hospices operate to turn a profit their nurses and doctors tend to be less available.
Hospice must remain a gift
When hospice works, it is a gift. It allows people to die peacefully, surrounded by family, rather than by machines. When it fails, it compounds grief with trauma. My family intends to file a formal complaint with state and federal regulators. Not out of anger alone, but out of concern that what happened to us is happening to others. The rapid growth of for-profit hospice agencies in California has raised broader questions about oversight, staffing models, and accountability. Families often have no way of knowing whether an agency operates for-profit or solely in the best interest of their patients. Additionally, there is far too little transparency about response times, complaint histories, staff coverage and the size of the geographical areas staff are serving.
We need stronger enforcement of response-time standards. We need clearer public reporting of complaints and outcomes. We need assurance that when a family calls during a medical crisis, help is truly available. And we need to ban new for-profit hospices from opening.
No one should die in unmanaged pain while waiting for a returned phone call. Hospice exists to ease suffering. When it does not, the system must answer why.
Cara Pace is president and CEO of United Hospice in Rockland County.
This article originally appeared on Rockland/Westchester Journal News: Hospice should never fail New York patients. We can’t let it | Opinion
Reporting by Cara Pace, Special to the USA TODAY Network / Rockland/Westchester Journal News
USA TODAY Network via Reuters Connect
