Your are reading Part 5 of my series, “What to expect from your hospice nurse.” To gain full perspective, I encourage you to start from the beginning by visiting the series landing page HERE.
It might seem strange to you that I am at part 5 of this series and I still have not really given much detail on what you should actually expect from your assigned hospice case manager.
This is one hundred percent intentional. Hospice is a robust services. There are many moving parts. I want to really drive home the concept that there is more to your hospice experience than your nurse who visits the most.
Today, it is time to take a deep dive into what you should truly expect from the RN assigned to your case.
Meet your hospice nurse
In this article I hope to help you gain a full perspective of how complex it is to provide nursing services to a dying person.
I always have to prepare myself when I can tell a conversation is working its way towards discovering what I do for a living. It’s the same for all hospice nurses.
“So, what do you do?”
“I’m a nurse.”
“Oh, that’s cool. What area of nursing do you work in?”
“I’m a hospice nurse.”
“Oh, wow, I don’t know how you do it. Thank you for your service.”
If most of us are honest, we don’t really know what to say next. It is kind of strange that we have chosen end of life as our specialty. I think most people are expecting us to just tell them which hospital we work for. They expect us to talk about the ER or ICU. Maybe they even have visions of various TV shows in their head.
Hospice is nothing like any other area of nursing. A new hospice nurse has to learn how to do all charting completely backwards. In the hospital, all charting has to be focused on all the positives happening for the patient. The nurse has to show the patient is improving.
In hospice, it is totally opposite. We have to focus on just how bad things are. We have to do what is called, “Charting to the negative.” We spend all of our visits looking for every negative thing we can find to help show Medicare that this person is appropriate for hospice.
This doesn’t mean we WANT bad things to happen to our patients. It’s actually quite the opposite. We got into this work to ease suffering. Still, our patients are declining. Their health will not improve. We have to document the decline and still work to palliate anything that is causing discomfort.
In the hospital they will work to take you off your pain meds. In hospice we expect to increase your pain meds.
In the hospital they work to make you stronger. In hospice we watch as you get weaker.
I share all of this with you to help you understand how complex this work can be. I also want you to understand something very important.
Your hospice nurse needs to document while they are with you (Bedside Charting)
With such complex work comes the need to make sure your medical record is accurate. This is best accomplished when the nurse documents while they are in your presence.
Many hospice nurses struggle to accomplish this. One of the biggest reasons for this is that they fear you (their patient) will find this behavior rude. They also feel like they don’t have the time to complete it all with you.
This causes many nurses to wait till they are done for the day to complete their charting. They will end up working late into the evening to get it all done.
Waiting till the end of the day and completing charting at home is a major contributor to hospice nursing burnout. Hospice nurses who don’t master bedside charting and up working twelve hour days. They have little-to-no time with their families.
You should expect your nurse to chart while they are with you. It’s best for everyone.
How many patients is my hospice nurse responsible for?
This varies between hospice agencies. There are many factors to consider.
The biggest factor is drive time. A nurse with multiple patients in a single location can probably handle a bit of a larger case load. A more rural nurse who has to travel longer distances between visits is likely to have a smaller case load.
I can really only speak to what it is like working in a metropolitan area. Here, in the Kansas City area, your nurse is likely to be responsible for 12-14 patients. This can vary between hospice agencies based on census and staffing. This many patients is easily a full-time load to be responsible for. A nurse is starting to get stretched pretty thin when her caseload is pushed upwards of 17 or more patients.
This is a hotly debated issue in hospice. In my opinion, the longer someone is in leadership, the easier it is for them to forget how challenging it is to care for a caseload above 15 or 16. Even with other nurses helping, or shorter drive times, the case manager still has the most responsibility. Much of their work just cannot be done by others. Large caseloads are a major contributor to hospice nurse burnout.
How often should my nurse visit me?
You have a lot more to say about this than you may realize. Hospice is very patient centric. The hospice is executing your care plan. The frequency of your nurses visits should be something you feel very comfortable with. You should feel like your needs are being met. I will provide you with some general guidelines. These guidelines are not mandated by Medicare. This is just what I have seen to be best practice. It’s what I have taught many nurses to do.
I should note here that it is impractical for you to expect your nurse to visit every day when there is not a serious indication to do so. You might want to reference Part 4 of this series where I explain that hospice is supportive care and not a replacement for a family member or close friend.
For a newly admitted patient, I always recommend a minimum of twice per week. This should be maintained for a while so the nurse can get a feel for you and your condition. As I mentioned in Part 2 of this series, Medicare requires a comprehensive assessment be completed, by an RN, no more frequently than every 15 days. Most hospice agencies require these assessments be done weekly. This decreases the chance of the 15 day limit being exceeded and payment by Medicare declined for non-compliance.
Once a relationship has been created, it is acceptable to have visits from your nurse just once per week. Especially if this is something you desire. Maybe you are early in your disease process and just don’t want a lot of disruption to your routine. This is perfectly fine. This is your care plan. You deserve to maintain as much independence as you are able to achieve.
When should I expect my nurse to visit more often?
There are two main reasons you should expect your nurse to come more often. For both of these reasons, I recommend daily visits.
The first reason is that you are starting to progress towards your death experience. Hospice is end of life care, but not everyone progresses at the same rate. Your hospice nurse should start visiting daily once she can tell you are in your last 5-7 days of life. This is not always obvious. Some patients will “surprise” us and pass in their sleep without warning. This is not the usual experience. Most hospice patients experience a more gradual decline. Rather than try to cover all of this here, I would recommend you purchase “Gone From My Sight: The Dying Experience” By Barbara Karnes. There is no better resource available. It’s inexpensive, and many hospice providers hand out this book to their patients free of charge. I do plan to address what you should expect from your nurse in the last 7 days of life before this series comes to a close.
The second reason is that you are combating some kind of disease exacerbation. Depending on your specific disease process, you may find yourself experiencing some intense symptoms from time-to-time. This may cause your nurse to make some major medication changes in an attempt to get you more comfortable. To do this well, your nurse may need to visit you daily for just a few days to get everything adjusted. Once your symptoms are under control, your nurse will return to the visit frequency you had previously established.
How long should these nursing visits take?
This can vary depending on your needs. Since there are (generally) two types of visits, you should expect two different lengths.
I have found the comprehensive assessment visits can run somewhere between forty-five minutes and one hour. Since the comprehensive assessment involves a head-to-toe assessment, this visit will just take longer. There is a lot for your nurse to document.
The second visit of the week, if you are being seen twice a week, can be thirty to forty minutes long. This visit can be quicker because the nurse is just checking in to make sure things are going smoothly. The documentation is quite a bit shorter. This is why this second visit can be dropped completely sometimes. It just might become unnecessary after you have been on service for a while. You should feel the freedom to keep this visit or have it eliminated.
This is, of course, a generalization. Your needs could be greater depending on this situation. Just consider the above as a general guideline. We never want anyone to feel rushed or hurried. Remember, this is your care plan.
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I wish our company did a more basic or shorter 2nd visit documentation. They push 2 visits per patient and both visits are long. My caseload varies between 16-18. I have gotten most visits down to approx 45 mins, longer if a recert. Something that includes charting, sometimes not. I do agree with the reason for burnout is charting at home!
I applaud you for your vigilance with your charting!
My current company only just implemented the shorter second visits. There is no reason to do full comprehensive assessment twice a week. I’m glad your organization likes 2x per week visits, but with a high caseload, 2x per week on everyone is exhausting.
Thank you for sharing your experience, Christa.
My grandfather just entered into receiving hospice nursing after a weekend in the hospital with a UTI. It was a scary start into the ER and when the need for a hospice nurse was prescribed, it was not made clear what the expectations of that would be. This article really helped me feel more prepared and less anxious about the care that he is receiving under hospice. Thank you so much – it’s so helpful to hear it from an experienced nurse.
I’m sorry your grandfather needs hospice care. I’m glad I have been able to help you understand what to expect from the service.