This isn't the hospice I used to know

Sue Damonas, BSN · Oct 7, 2015

I know exactly what you mean. The first 5 years I worked in hospice were great and then things changed just as you described. Plus it got so hard to be able to get things that patients needed. Too many things broke the camel's back and I finally left.

margin261 · Oct 8, 2015

I am new to actually working strictly hospice as an RN. I've done some agency work as an LPN for a hospice several years ago & have some experience taking care of GIP when working on med/surg.

All that to say, No- you're not alone in your thinking. I was really surprised at a few of my pts. Even questioned the DON regarding one that was so inappropriate (IMO). The spouse was not on board with hospice philosophy and wanted everything treated as it had been with home health. Frequent foley changes & PT/INRs and constant requests for antibiotics. I educated constantly with no results. And I might add- pt was not anywhere near the 6 month guideline. Spouse even requested therapy (PT & OT).

Jensmom7, BSN, RN · Oct 8, 2015

Some of the old diagnoses like dementia and ftt were used for so many inappropriate patients that they can no longer be the primary diagnosis.

The business aspect of health care has hit Hospice hard. Patients don't automatically get comfort kits anymore because not everyone needs every med.

The increase in allowing testing, Coumadin, etc. I personally feel has been to pacify family members who would otherwise not agree to Hospice, because they still "want things done".

I don't worry so much anymore when families want to continue ALL the meds mama was taking. They aren't covered by Hospice, and if their Part D provider decides they aren't medically necessary, mama (or whoever is managing her finances) has to pay for them. Amazing how quickly families decide to stop Namemda or Lovenox when they have to foot the bill.

Same with labs. Not part of the Hospice POC, and good chance Medicare will deny payment.

My agency is pretty good about making sure families are on board with the Hospice concept. Frankly, the only patients of mine who are past the second cert period were ones I inherited, and who were brought on too soon, but NOW meet criteria.

heron, ASN, RN · Oct 8, 2015

The longer a person is on hospice the better for the bottom line. The reimbursement structure rewards keeping a high headcount and minimizing expensive services.

The company tends to incur the highest costs in the first and last weeks of an admission - it's the time in between where they get the most profit. Many hospices are paired with or part of home health agencies, too.

I also think it has to do with mission creep. There's good and bad aspects to that. Where does one draw the line between living and dying?

jdub6 · Oct 8, 2015

No, you are not alone. All the staff I know, new or not, are frustrated with inappropriate admissions and levels of care. Not uncommon to see pts on their second YEAR or beyond (some in the 4+ year range). And the Medicare ones just get recertified as long as the paperwork is in, no matter what it says. Even if the face to face says the pt is eating well, walking, talking, gaining wt, etc. There is NO oversight from Medicare in terms of whether the recert actually meets criteria. And I also see a lot where the md recert will say "poor appetite" or "reduced adls and pps 20" but nursing notes and face to face say eating 75-100% at facility plus ensure and goes shopping weekly with daughter (walking the whole time!). Medicare continues to pay. Occasionally the private insurance cos or Medicaid will reject recerts like this, seems they actually read the paperwork.

And ditto on the lab draws, abx, etc. Not at all uncommon to have end stage copd pts, or even non lung dx, checking pulse ox q4h and wanting inpatient bed or er visit (and abx of course) if it drops below 90, no matter how comfy the pt is. "Do not hospitalize" who apparently think that only applies if the pt is stable, but want to continue hospice. And frequent pt/ot consults, some repeat sessions. It's all about keeping those pts and the money they bring in. But, at the same time they rarely send liquid meds, even morphine or ativan (and forget about compounded meds!) because the pills are cheaper, so the families are taught to crush and dissolve. Nevermind that the pt.s tongue is white with pill residue. But ongoing iv fluids on a cva because the family will revoke without them? Sure.

What's sad is the patients who are not appropriate, especially those in facilities, who could actually probably have a better quality of life if not on hospice because they AREN'T terminal within 6 months and CAN improve with rehab, and have a lot more independence because of it. Sadly we are seeing pts in their 2nd or greater year of hospice who actually are declining because they are addicted to their pain and anxiety meds, on massive doses, their disease is stable but they don't leave the house and are increasingly confused because of the meds but can't get off. Often end up on methadone (even copd pts without any chronic pain) at increasing doses plus breakthrough meds, also increasing, plus benzos. And no non-hospice md will prescribe those levels of meds for these pts so they often manipulate and demand to stay on hospice (the hospice md is usually managing their controlled meds.) A hospice company was actually sued for keeping a middle age man on service with a mistaken cancer dx and afte he was discharged when it was discovered he had no cancer he couldn't function due to addiction. (Actually we also see pts referred to hospice, even if nowhere near terminal stage of illness, because they are demanding too many narcotics and their md doesn't know what to do with them. Often their "morphine requirement" is used as justification to certify, and recert, and recert, and recert....)

Don't know the solution and I think there are similar problems everywhere (the ed nurses that deal with stubbed toes and paperwork for example.) But it seems to be nationwide. And yes, it is very frustrating.

heron, ASN, RN · Oct 8, 2015

Many families are attracted to hospice because they think it'll be like home health only with more services. Hospice companies gleefully capitalize on this to increase their census of relatively low cost customers.

I was interested to see that CMS has started denying non-hospice-related charges when a patient is also using the hospice benefit. I think that's a good thing.

Just about every piece of new paperwork, restriction and regulation to come down the pike is an attempt to control hospice companies' system-gaming.

And they have to game the system. They need to turn a profit by tapping a revenue stream that was originally intended to provide low cost comfort care for people and families facing immanent death. Shareholders and management demand it.

In my view, the mission creep we're seeing was inevitable.

annie.rn · Oct 8, 2015

I have not worked hospice for 6 yrs. now but I saw a lot of what is being talked about here even back then. It was very frustrating!

I remember covering for the nursing home team when they were short staffed. I saw a pt. who I was told was on hospice for end stage dementia. After talking to him, he was oriented x3. He had a very thick Trinidadian accent which made him difficult to understand. However, if you listened very closely, you could understand what he said. I spoke with the CNA who cared for the pt. most often. She told me that he WAS completely oriented, just as I had observed. I also asked about his mobility, ability to do ADL's, etc. The same CNA told me that he was a one person assist to chair but that he used to be able to do most ADL's himself w/ standby assist for safety before they stopped his PT/OT. She thought that if he went to PT/OT again he'd be able to regain his independence. When I got back to the office and told the team manager about my observations I was basically told not to rock the boat.

Another pt. was admitted w/ a CA dx. but she was nowhere close to being terminal in 6 mos. Their MD referred her to hospice b/c she and her husband were in their 80's and she was beginning to show the very early signs of dementia. Her husband was a control freak and couldn't deal w/ his wife occasionally doing the things that go along w/ early dementia. He didn't want to spend his own money to get extra help at home so he strong armed the Dr. into a hospice referral. He was a retired high ranking military pilot and was used to getting what he wanted. I won't go into any more details b/c the case got ugly but they never discharged them from hospice even though the pt. was technically not eligible. It was a nightmare. That man was so threatening and verbally abusive (to the staff) but it was more important to keep a client than to do the right thing and discharge. I got the med director, two of the team doctors and my team nurse manager out there on several different occasions and no one did a thing. I quit shortly after that and have not gone back to hospice since.

It's a shame, too, because I love the idea of hospice nursing. That first experience scarred me so I'm afraid to try it again.

jdub6 · Oct 23, 2015

The pt described admitted for "end stage dementia" that was actually a language barrier who declined after stopping therapies that had been helping is heartbreaking and a perfect example of the harm that can be done when hospices put $$ and pt numbers over pts themselves. Often they argue that sometimes you have to "be creative" to "help" pts who want and need comfort measures but don't quite fit the mold and that they admit and keep questionable pts to help the m and the family. Sometimes this is true. But, when you tell someone over and over again that they are dying, have sw doing life review work with them, when it is clear that they are medically NOT imminently terminal is wrong. And its wrong for the pt to stop services that they desired that were working because the family wants to keep the hospice team too (I see this a lot-the family is given carte blanche to make decisions for a completely alert and oriented pt that will result in the pt dying, because the hospice knows the pt won't be around to complain.

My worst so far I think were a pt admitted from the hospital for end stage lung dz who was completely alert and oriented but hadn't been told about his prognosis nor had hospice been discussed with him, and the family was allowed to sign consents and dnr...BECAUSE THEY TOLD THE MD IN THE HOSPITAL AND THE ADMIT RN THAT IT WOULD UPSET THE PT TO BE ON HOSPICE AND A DNR and the man had repeatedly expressed desire to be full code while hospitalized. This completely alert man was asking the nurse why he wasn't getting some of his meds, labs and therapies and the family asked her to flat out lie to him. Thankfully after a few days the medical director stepped in, met with the pt and discussed his prognosis (after multiple staff refusing to return due to ethics) and the pt agreed to sign consents and dnr. Good thing, because he died within the week. Granted, he wound up consenting but for the admit team too think it was ok to deceive him because the family was afraid he'd be upset was disgusting, not to mention illegal.

The other was a psych pt with multiple chronic but non lethal illnesses who had documented borderline personality who had been given a feeding tube due to mysterious abd pain with eating anything that miraculously resolved with bolus feeding via tube. She started to refuse the tube feed during a routine post op.hospitalization. as the tube was placed elsewhere, records were not available and the docs assumed she had it because she needed it for medical reasons, she was referred to hospice. Family expressed some doubts but w ere told by the hospital ce that they were in denial and given literature and counseling on terminal illness. She went home, refused to eat for a day or two while telling everyone she knew that she was dying, then asked for comfort food "if I can tolerate it" for the taste. Began eating full meals with no problem, actually gained weight. Nothing terminal about her. She was recertified for over a year as she would sit with the chaplain and groups of friends writing her obituary, picking out coffins, etc. Finally she was discharged after a new hospice doc reviewed the case. She completely decompensated, threw atantrum that became a total breakdown and wound up in psych emergency. After the drama surrounding discharge was over she resumed business as usual, and was physically told she had stable chronic dz that was unlikely to worsen.

sclpn · Oct 26, 2015

Same here....Hospices are under great pressure to turn a profit, whether they are for profit or not. In my area the hospice competition is very fierce and I see "patient seeking" so much. I also see doctors sending referrals when patient/family keeps pressuring him for "help" in the home. The doctor knows the patient won't qualify for home health so he sends them to hospice and if hospice turns them down for services the doc office plays 20 questions on why the patient wasn't appropriate for hospice. It's sad but it's everywhere.

iowahomecarenurse · Nov 3, 2015

Wow interesting convo. I work in a very small hospice agency and we are struggling to grow. Why? Because we had a census of 20 2 years ago, and now down to around 10-12. A competitor came in and won over the doc's/nursing home and that agency admits EVERYONE. Surprisingly, they have no contracts with surrounding hospitals so they can't even offer the inpatient benefit. The agency I work for will do consult after consult until the family is ready, show up after hours to admit a dying patient who will live only 12 hours, and also has integrity and honesty to not scam medicare by admitting everyone with a hang-nail. It is ridiculous, it's dishonest, and a disservice to patients who really need holistic hospice care. I call those agencies "pseudo-hospice" They do minimal services to patients, and reap rewards from medicare. Why is there no oversight? We watch about the debt medicare is creating on our nation and yet this is happening. Shame on them.

enchantmentdis, BSN, RN · Nov 5, 2015

Many families are attracted to hospice because they think it'll be like home health only with more services. Hospice companies gleefully capitalize on this to increase their census of relatively low cost customers.
I was interested to see that CMS has started denying non-hospice-related charges when a patient is also using the hospice benefit. I think that's a good thing.
Just about every piece of new paperwork, restriction and regulation to come down the pike is an attempt to control hospice companies' system-gaming.
And they have to game the system. They need to turn a profit by tapping a revenue stream that was originally intended to provide low cost comfort care for people and families facing immanent death. Shareholders and management demand it.
In my view, the mission creep we're seeing was inevitable.

I have families tell me right up front, "She's not dying. We want diapers and meds. When she's gone can we keep the meds?"