Hospice Care

Fortunately, here in NY, we are a Certificate of Need state, meaning you have to have supporting data that a facility is needed.

One big distinguishing factor is finding out if your area's hospice provider is for-profit or non-profit. Independent, non-profit hospice organizations will always provide the better care.
Avoid for-profit health care like the plague.
 
Some really good information here. Bottom line, know your rights and avoid the for-profit hospice care companies.

I had a good experience with a non-profit hospice group with my mom. Kaiser had provided her excellent ontological care for metastacized breast cancer for 22 years, however it took a trip to the local non-Kaiser emergency room to correctly diagnose what was to be her terminal condition. She was transferred to a Kaiser hospital where the foreign nursing staff provided a very poor standard of care. The Doctor recommended hospice care and said she had weeks or months left.

Brought her home late night and hospice nurse helped set her up. Nurse came the next day, took one look and said she was in end stage with maybe a couple of days left. She passed two days later. The Kaiser doctor was about as competent as the Kaiser nurses. The hospice nurses were absolute angels though.
 
My Daughter In Law is an RN . she worked as a Hospice Nurse for several years . She was the Nurse for two family members and I saw her in action up close and personal . God bless people like her . Obviously not all of them are as good .
 
like much else it can be "the money you have" (insurance). Home hospice and hospice Center can be of quality due to hospitals having life oriented ("...more machines, more measure !..." ) values. Death is part of life & the hospice staff assist their client AND family with that separate reality. Death is un-mercian so we need doulas and nurses to bring it back into the home and community. One step better is the 11 states'n DC that authorize death w/dignity and allow the individual decision on own death. Once medicalized, controlled by law - that disappeared (150 yrs ago) after 150 - 250K yrs of family control, individual control~
 
.I couldn't do that work and assume many of those that do must have an ability to detach somewhat.
When my prior spouse was in hospice, I said the same, I don't know how you nurses can work here when people are dying all the time, so depressing. The lady said though tha someone needed to do it and she felt like it was her calling. In our case the hospice nurses were pretty personable in general. It was a really nice setting, had a big room and a patio. It was in December in Texas so most afternoons I could throw the door open.

IIRC we were there 11 days. December 2016.

I'm remarried now and don't think about it much but thanks for the reminder.
 
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.
 
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TooManyWheels, I am truly sorry to hear about your experience too. Mine was similar for my mom. It was horrible and your line about being "punch drunk" from no sleep - I truly get that; my wife and I were the same way.

I'm glad some have had good experiences, but based on my limited experience with hospice, I will never agree to this treatment without having a lawyer on retainer to force adequate care. It's a shame to think this way, I know; but after my mom's experience - I absolutely do not trust for profit care to provide proper care for anyone anymore.

And what's worse to me, in smaller towns there probably aren't many choices, if any at all. For profit care is capital driven, and the "patient" isn't the customer but instead is the revenue stream. The true customer of a for profit is the shareholder. Maximize shareholder value by cutting corners on the care of the "revenue" stream - sad but true.
 
TooManyWheels, I am truly sorry to hear about your experience too. Mine was similar for my mom. It was horrible and your line about being "punch drunk" from no sleep - I truly get that; my wife and I were the same way.

I'm glad some have had good experiences, but based on my limited experience with hospice, I will never agree to this treatment without having a lawyer on retainer to force adequate care. It's a shame to think this way, I know; but after my mom's experience - I absolutely do not trust for profit care to provide proper care for anyone anymore.

And what's worse to me, in smaller towns there probably aren't many choices, if any at all. For profit care is capital driven, and the "patient" isn't the customer but instead is the revenue stream. The true customer of a for profit is the shareholder. Maximize shareholder value by cutting corners on the care of the "revenue" stream - sad but true.
Yes - In rereading your posts it is apparent we encountered much of the same. Thank you for bringing this up, and best wishes.
 
I work in healthcare....as a RN.

Let me tell you all that non-profit... Is a total and complete fallacy.

Non-profits make lots and lots and lots of money. .. trust me ... They do. And their leadership people are very, very well paid. Take that to the bank.

So whether it a s supposed "non-profit" or for profit healthcare agency.... Terrible things can and do happen with circumstances like this.

I'm sorry but I believe 20-30 maybe even 40 percent of people in my supposed profession... I would have them take care of a wounded animal. Much less a human being.
 
I'm sorry but I believe 20-30 maybe even 40 percent of people in my supposed profession... I would have them take care of a wounded animal. Much less a human being.

I thinking you mean "would not have them". If so, then that is indeed a sad commentary because I was hoping the non-profits would at least be a little bit better. Thank you for posting that as you are right in my mind. Blanket statements are usually never right, and thinking that a non-profit is the best answer is probably not the case as well.

You are correct on non-profits too. People there make lot's of money, depending on the position. CEO at Red Cross set off a firestorm many years ago with the pay level there. Non-profit doesn't mean not making money
 
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