That article describes just a hint of what we went through with my mother. From our experience, the problem is not just with the hospice industry, but that it is just a part of a callous, profit making racket done by doctors, hospitals, and rehab and skilled nursing facilities, all of whom manipulate the system to the max. Here is an example of how it all ties together. None of this made sense to me while it was happening, it only came together as a pattern in retrospect.
My mother began a series of hospital admitals at a well known heart facility at age 88, a little over a year before she died of heart failure. In retrospect, it was clear from early on that she was in steady decline with no hope of meaningful stabilization. The idea of hospice should have been floated as a realistic option relatively early on, but was not. Little did we know what was to come.
Three months before she died her heart stopped while in ICU, and the presiding doctor overrode her explicit DNR and had her intubated and her heart restarted. Both she and the family would have preferred for it to end there, especially considering what was to come. As it was, the doctor's executive decision was that she could recover medically, and should. So she woke up in terror, in exactly the situation she never wanted to be in. Then, a few days later, the same doctor who said her life was so essential to save declined to make the medical case for doing so in his hospital, not even by moving her to a lower level of care within that facility. Things were really starting to *not* make sense.
The next most (il)logical thing would be to move her to a transitional care facility, a semi-hospital so to speak. Directly from ICU to skilled nursing, if you can imagine. But her medicare advantage plan, whose name is intended to convey its humanity, would not cover even that. They would, however, allow her three weeks in a "rehab" facility, essentially a large hotel where people recovering from broken bones go for twice a day physical or occupational therapy. Primary staffing was by orderlies who would come in every couple of hours, with perhaps one of two nurses (non-RN's) per floor of thirty patients. Calling for one might get you one in five minutes, or thirty. She fell once because she could not get assistance to go to the restroom. A doctor would visit a couple of times a week.
So my mother, who just almost died and whose lungs were shunted for external fluid drainage, and could not go to the bathroom by herself, was being made to walk the corridors twice a day. I believe a doctor saw her once, perhaps twice in two weeks. Despite being told to the contrary, medical care was not the agenda of this facility. I firmly believe the intent of her plan provider was for her to die here, as there was barely meal delivery, much less oversight. After two weeks of her even further deterioration, I called an ambulance and had her taken back to the hospital where she spent the first week in ICU, again. Odd that the doctor in the facility had seen no cause for alarm.
After an additional three weeks, the in-house social worker admits no further treatment is feasible and suggests hospice. So after eight weeks of hell, in which my mother is a puppet between doctor's desire for revenue and insurance's reluctance to pay, we're thinking something sensible is finally happening. First will be an inpatient facility, then visits from the service at whatever place we choose as her next residence. The industry represents the in-house facility as a chance for the patient and family to get their breath and footing while they decide the next steps. I seem to remember two weeks being represented as typical. She suggests a couple of facilities which can accomodate my mother's extreme oxygen requirements (she says she knows these facilities well), and says she will be made comfortable. We choose one.
Mom is drugged to the max by the hospital before being transported. On arrival at the hospice (just down the street) thirty minutes later, she is drugged *again*, in spite of never having woken up. She does not regain consciousness for a day and a half. When we ask why she was so heavily sedated and so quickly, we are told it is "standard practice". They, in fact, have no special oxygen provisions. They drag in two portable concentrators, gang them together and run them full blast 24/7 in the bathroom, which makes it difficult and uncomfortable to use. Other than that, treatment is decent. She has around the clock supervision by an adequate number of nurses, although it must be said that this is clearly a gig taken by nurses who want something lower key than being on call in a hospital. One was sharp, most were adequate, one was questionable.
At the end of the third day we are told, with no warning, that she will be discharged in the morning. We tell them "It's not happening!" We know that non-inpatient care is not 24 hour, only visiting on occasion, so that isn't a surprise, but the lack of warning (what about the two weeks?) put us into an emergency. They relent and say they will keep her another day, but that is final. They say they have a special pulmonologist who can come and wean her off the extreme oxygen, and is, in fact, a specialist at that. My wife and I arrange with the hospice's durable equipment provider for a hospital bed and inflatable mattress to be taken to Mom's house, where we will look after her. The equipment provider delivers the bed and mattress, but the pump does not work. Unaware or uncaring of any of this, the hospice proceeds to dump off mom. And if you were to think the hospice company had any role in facilitating this transfer you would be wrong. The inpatient and home care portions were different divisions which didn't talk to each other and we were in the middle trying to make things sort-of work.
The visiting nurses were competent and caring. The oxygen "specialist" - (supposedly an MD pumonologist from Mexico who had "some trouble" with his license and had come here to practice!?) - his special expertise was turning down the concentrator until the patient has trouble, and then relenting slightly. At this point the whole agenda of the industry was becoming clear. At first mom was revenue, now, due to the reimbursement arrangements, mom was a liability. One night Mom went delirious (oxygen deprivation possibly), and true to their word, the service had someone on call to send out at 2 AM. After three weeks my wife and I were punch drunk from lack of sleep and finally convinced her to let us move her to a small "in-home" nursing home.
I don't indulge in conspiracies, but I find it hard to view this scenario as nothing more than the standard falling through the cracks that happens with profit-driven assembly line medicine, with which I've long been familiar. The goals and decision criteria should have been clear - Either make her better, or allow her to be comfortable. Simple enough. Neither one happened. She went through months of hell just so "the industry" could make money from her misery. I think there was "incentivizing" at multiple levels. The doctor may or may not have been paid to keep her alive in the moment, but there was surely an incentive to get her out. The rehab facility stay was a sham, they had no capability to help her, but hey, a room occupancy is a room occupancy. I think the hospital social worker had some relationship with the hospices which was not apparent, or she would not have misrepresented them as she did. And finally to the point of the topic - the incentives of the hospice were extremely clear - get the gig, keep it as long as it is profitable, then kill off the patient through neglect or subterfuge. Harsh language, but I stand by it. The article shown earlier says the same. I should add that the hospice in question is nationwide and one of the well known names in the industry. Caring people do work there, but the business model is hardly automatically benevolent.
I don't know how I will go out, but I will do my best to make sure it isn't like this. Vulnerable, end-of-life people deserve better.