Normal Hospice Care/Rural Hospice "Service"

[Idealista]

Although I am a new grad (RN) nurse, I have spent several years providing home hospice care for a variety of patients - mainly in larger cities. I have recently started caring for a woman who is in the care of a smaller, rural-area hospice. I am not certain if what I am seeing is "typical" - or simply a distortion of what hospice has always meant when I thought or read of it.

In this area, hospice nurses make one visit a week, typically lasting no more than 15 minutes. They have 28 patients and two nurses. No techs/aids or LPNs. There is no hands-on care given. The nurses typically walk in, say "hi" to the patient briefly, do the med count and leave. Once I had a nurse walk in, essentially toss a gait belt to me and say "here you go" - and leave. That was her visit for the week.

There is no assessment done - physical or otherwise. No care plan is provided to the family or other healthcare givers. They state they "have no real volunteers"...so the family is on their own to find people to care for their loved one. Most families don't know the questions to ask or the things to look for in a caregiver. (Some people they "found" turned out to be grossly negligent in their care. One night person simply slept through the patient's medication time...and when they woke in agony, didn't understand what the fuss was about.) Most of these people are also taking these jobs because now it is the only work they can get around healthcare without being vaxxed. Of course, they don't disclose that to the family - and the families here don't know to even ask. They get a list of names from a list from the county that anyone can call up and have their names put on - no checks or vetting is done. Families are utterly desperate and utterly exhausted and so take the first available name on the list. (One caregiver told me they had worked 104 hours the week before.)

The hospice's "pain management program" is: "Give her more morphine, that's what it's for."  No other pain management care or discussion. No guidance on how to administer the morphine or how to recognize signs of pain or provide alternate/additional comfort measures. Even more importantly, families are worried about addicting their loved one, so often want to wait until the person asks for medication. So, not a lot of education is being done either.

This weekend the "usual" nurse was off and my colleague wanted to adjust our patient's pain regimen - hoping to make her more comfortable. She has been in increasing pain since her regimen was changed. She was also developing a UTI. We called the hospice and asked for an antibiotic. The person answering the phone said "no". She wouldn't ask for that. We asked if could go back to our original pain regimen because the morphine was being required in ever increasing amounts in a very short order and the previous regimen (that added Tramadol to her MAR) was more effective. (She is not actively dying, btw...but rather in a steady-state.) "No" was the response. She would not allow us to resume the earlier regimen - regardless of how much pain the client was in. When asked "why not?" - she said that she wasn't going to "step on the other nurses' toes". We asked this on Friday knowing the weekend was coming up and that doctors would be less available. When we asked who else we could speak with she said that she was "in charge" and there was no one else to address the issue.

I find it inconceivable that a hospice is being run this way. I understand shortages and everyone needs time away. But why put someone in charge who is too afraid to "step on toes" to do her most job?So our patient is experiencing unneeded discomfort for at least the next two days, which is basically leaving me apoplectic

It is such a disappointment to see such a worthy and important service being so bastardized that it hardly even resembles what hospice care is anymore.

Your thoughts and perspectives are very invited...

 

[Idealista]

A clarification is in order. I am working for this family as a caregiver - not an RN. (Waiting to sit for the NCLEX.?) I am not employed by this rural hospice. The colleague mentioned here is an LPN. We were hired privately by the family.

[Kelly77marie, RN]

The nurses are not following Medicare guidelines. A comprehensive exam is required every 14 days, to be done by a registered nurse, not a LPN. I will say it is common after COVID to get volunteers, but it is also a requirement to work towards a volunteer staff of 5% of your total census. And the quality of care is indeed lacking in terms of pain and infection management. Unfortunately, this area is probably not serviced by an abundance of companies, which makes options limited. 

[Kelly77marie, RN]

Sorry, meant it is hard to get volunteers after COVID. 

[Idealista]

@Kelly77marie Thanks so much for your response...!

You are correct - this hospice is the only one in the area. So - their client "base" has no other options. People are utterly desperate and have nowhere to turn except a list of unvetted "caregivers" - most of whom have never even met the hospice personnel. 

One question the other nurse and I have is: should the hospice be sharing the care plan with either the family or us??? I have read some of the Medicare regs about a care plan being documented and kept up to date - but shouldn't it be provided as a guide to the family/caregivers at some point? I think I remember reading that the plan should be created with input from family members...

But, neither of us has seen it- it's being "kept in the office"...although it begs the question: "What good is it doing the patient there?" Care plans should be dynamic and usable documents - yet the care providers doing the hands-on work are "flying blind" with no direction in the form of a care plan or any other documentation other than DNR order.

[Kelly77marie, RN]

The patient/family should absolutely have access to the care plans... they should have an active role in Hospice care plan making and be kept up to date on any changes made. A copy of the care plans should be kept in a binder in the patient's home. 

[Idealista]

Thank you so much for this! I want to call this to the husband's attention. He is very capable, intelligent and concerned - and he is growing increasingly frustrated with the hospice personnel at this point. It might help him to know that there is a "plan". At this point, we joke about "making it up as we go" - and at a certain level in hospice you have to stay flexible. But, this is a bit ridiculous. Thanks so much for that information.

[SunDazed, BSN, RN]

Idealista said:

Thank you so much for this! I want to call this to the husband's attention. He is very capable, intelligent and concerned - and he is growing increasingly frustrated with the hospice personnel at this point. It might help him to know that there is a "plan". At this point, we joke about "making it up as we go" - and at a certain level in hospice you have to stay flexible. But, this is a bit ridiculous. Thanks so much for that information.

The family you are working for is very fortunate to be able to afford private caregivers. Many families don't have that option and are surprised to find out hospice does not provide daily in home care. Where I live there is a shortage of home health aides, so our hospice even struggles to get patients two visits a week. I worked in a more populated area before COVID and we had fantastic HHAs who would go 3-4 times a week when it was close to end of life. The VA is really great at supporting veterans here and so they sometimes have some daily caregivers, but never around the clock. There is also a PACE program here to help elderly stay in their home. They also can get daily caregiving hours for those patients, but again not 24/7.

As the other replies indicate, the hospice is not following Medicare requirements for comprehensive assessments by an RN every 14 days. But even when the hospice workers are very good, there can still be a feeling of "making it up as we go". The transition towards end of life can vary a great deal from person to person because of the complexity of layered diagnoses and the resulting symptoms to manage. When doctors in acute care recommend hospice they will sometimes try to guesstimate how much longer the patient has to live. Sometimes they are wildly incorrect. 

Even those who work in healthcare as providers can be surprised by the challenges and costs of hospice at home. I added a link about an NPs experience. 

https://www.wbur.org/cognoscenti/2023/02/08/medicare-home-hospice-care-sarah-romanelli

Good luck with your NCLEX! Thank you for caring!