Your are reading Part 3 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 HERE.

Now that we have what to expect from the series, and the Medicare guidelines out of the way, it is time to debunk some of the misunderstandings I run in to every week.

Your hospice nurse isn’t trying to kill you

Some of you might find it strange that this is where I am going with this part of the series. Unfortunately, many people all over America misunderstand what hospice is all about. Today, I hope to clear up some of the fog.

Hospice does not hasten death

The United States does have some “Right to Die” states in the union. The purpose of this series is not to debate or even render an opinion on “Right to Die.” What I am here to help everyone understand is that nowhere in the US does a hospice nurse administer medications with the sole purpose of ending someone’s life. This activity is illegal in all 50 states. Right to Die states require that the patient administer those medications to themselves, and hospice nurses are given the right to decline to even be present for this activity.

There are actually studies that show patients frequently live longer when they elect hospice care.

American Family Physician
Journal of Pain and Symptom Management
New York Times

This is just three examples. A quick google search will reveal a lot of studies and articles from reputable sources that contradict the idea that hospice care will hasten death.

Articles are boring. I included these to just provide some backup. Let me share my own experience and how I help my patients understand why they may feel like hospice hastens death.

The best place to start is the comfort kit. Unfortunately, many people associate death on hospice with the medications we use.

Understanding the comfort kit

Your hospice provider will want to have a “comfort kit” delivered to your home for emergency use. This kit has medications to use for symptom management. Let’s take a walk through the kit now. Please note that different agencies provide different medications in the comfort kit. This list will go from most likely to be in the kit to least likely. Your agency may provide them all. Your agency might only include the first 3.

1. Morphine – Yes, your comfort kit will have morphine in it. If you have never taken morphine, this might be scary. Especially if you have ever watched a war movie. Your favorite character just got shut up by the enemy. While he is lying there, one of his friends stick him in the leg with some morphine. He may even get stuck more than once. Then he dies. Can I submit to you that he didn’t die from the morphine? He died from his wounds. It’s the same thing in hospice. Our patients don’t die from the morphine. They die from their terminal illness. It should also be noted that morphine is the exact same opioid strength as hydrocodone. If you have ever received hydrocodone following a surgery, then you have had an equivalent dose of morphine. Five milligrams of liquid morphine is exactly the same as a Hydrocodone tablet. Morphine is great for pain or shortness of breath. Morphine does not hasten death.
2. Lorazepam – Lorazepam is also called “Ativan.” This medication is a benzodiazepine just like “Clonazepam” or “Valium.” It will help you feel less anxious and more relaxed. It is also great for muscle twitching or uncontrolled seizures. It can also make you sleepy.
3. Hyoscyamine – This medication has several uses. Most commonly it is used to control oral secretions. The most common term for the excessive oral secretions at end of life is the “Death Rattle.” The death rattle makes an appearance when the patient stops swallowing saliva. The saliva glands continue to make saliva, and it collects in the back of the throat. The patient can breath through this just fine. In my 8 years of hospice care, I have never had a patient aspirate and die because of the death rattle. This medication will help a little, but it will not stop the saliva glands completely. The patient will not experience discomfort from the death rattle, it is just very disconcerting to listen to.
4. Ondansetron – This medication is used for nausea and vomiting.
5. Haloperidol – This medication has been around for decades. It has several uses. It is a sad reality that many patients will experience something called “Terminal Restless” in the last few days of life. Terminal Restlessness most commonly reveals itself as severe confusion with hallucinations. Sometimes the confusion can get so bad that the patient will try to climb out of bed even though they are no longer able to stand. Haloperidol will help clear the fog and allow the patient to be more relaxed.
6. Tylenol Suppositories – Tylenol is for more than just pain. Some patients will develop a fever during end of life. This does not necessarily mean they have an infection. Most generally, the body is having a hard time regulating temperature as the organs fail. Tylenol suppositories can be used to reduce fever at end of life. Before using Tylenol suppositories, you should consider cool compresses on the back of the neck or under the arms. Not all patients remain comfortable when being moved around a lot at end of life.
7. Dulcolax Suppositories – Increased use of morphine will cause the digestive system to slow down. These suppositories are a last resort for severe constipation. There are plenty of oral options that should be started long before a suppository is needed.

Now, I encourage everyone to perform their own study of all these medications. Please be aware that some of them are contraindicated for certain age groups or certain disease processes. None of these contraindications are of concern when someone is in their last 7 days of life. In the last days to hours of life, the focus is on comfort and safety. Safety and comfort have priority over the long-term affects of some of these medications. For example, Haloperidol is contraindicated in patients who have Parkinson’s disease partly because long-term use of Haloperidol can cause uncontrolled muscle movements. For the last few days of life, Haloperidol can be used for Parkinson’s patients who are having bad terminal restlessness and are in more danger of harming themselves than having increased uncontrolled muscle movements.

How does your nurse help you live longer?

Since I have made the statement that hospice doesn’t hasten death, let’s discuss how your nurse will help prolong your life.

Before you’re on hospice, what happens when your health starts to decline? You reach out to your doctor to set an appointment to get seen. In general, you’ll be setting an appointment that is a moth or more out. Maybe you have a better relationship with your doctor, and you can get seen next week.

What if you start to have some problems overnight and need help as soon as possible? Now you’re headed to the ER in your car, or worse, in an ambulance.

Eventually, you will end up back in the hospital. Most likely, by the time you get there, your health has really gotten bad. Who knows what kind of permanent damage has occurred because of this delay in care. When you are in hospice, the timeline to getting real medical help is a fraction of what you are used to getting.

Your hospice nurse is visiting you weekly. She will catch all kinds of problems early and often. She can, most of the time, get you medications and medical equipment same day. This will all happen while you are sitting in your recliner and exerting zero energy. It’s a beautiful thing! Now you are getting treated days or even weeks sooner than through any other way. Every time your nurse walks in the door it is like you are at the doctors office. She has a direct line to a physician who can provide orders same day.

Why did my family member die 3 days after going on hospice?

So, I just spent a bunch of time telling you that patients live longer while on hospice care. Your experience might include a family member who died just a few days after entering hospice care. This can cause many patients and family members to be fearful and associate hospice with a quick death.

Everyone’s hospice journey is different, American healthcare comes with many life-extending treatments. This provides all patients with many options when considering how to treat their life-limiting illness. Some patients will engage all their options until the last possible minute, and some patients will forgo many of those treatments and elect hospice earlier in their disease process.

Patients who choose aggressive treatments until the last possible minute will have a very short hospice experience. Patients who decide to access hospice care much earlier in their disease process will have a longer hospice experience.

Regardless of which option you choose, diseases are the cause of death, not the comfort measures used by the hospice team.

To close out this article I want to leave you with this closing thought. It is something that I believe gets sugar coated way to often by hospice providers.

Hospice is end of life care

Regardless of what you have read or heard, hospice is end of life care. There is no version of hospice that is for patients who are not dying. I have heard too many liaisons/marketers tell patients, “Hospice is not what it used to be. You don’t have to be dying to be on hospice.” This is just not true. To be on hospice care, the hospice doctor has to submit, in writing, that you have 6 months or less to live. Some patients live less than six months, and some patients living longer than six months.

If you are reading this article, and you are on hospice, and you find this last paragraph confusing, I have some advice for you. I would recommend that you find the paperwork you signed to start hospice care. That paperwork will be quite clear on what you actually signed up for. At some point, it will mention that you have chosen comfort care only. This means that nobody on your hospice team is expecting you to recover or get better.

Not understanding what hospice really is does contribute to the idea that hospice hastens death.

Your hospice nurse isn’t trying to kill you. She just wants you to have a peaceful passing.

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Your are reading Part 2 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 HERE.

Medicare Guidelines for Hospice Nursing Care

Hospice in the United States is regulated by Centers for Medicare & Medicaid Services also known as CMS. While some of the rules that regulate hospice care can be very specific, there are also A LOT of gray areas. Today, I will address some of the regulations that will guide some of your nurse’s behavior and your overall care.

This is NOT an exhaustive review of the CMS guidelines for hospice care. I will cover some of the most important guidelines. At least what I think is most important.

Your case manager is an RN (Probably)

In general, hospice nurses have 3 types of assessments. They are The Initial Comprehensive Assessment, the Comprehensive Assessment and the Focused Assessment.

Only an RN can complete the Initial Comprehensive Assessment and the Comprehensive Assessment. An RN or LPN/LVN can complete a focused assessment.

It is a CMS requirement that the Initial Comprehensive Assessment be completed within the first 48 hours of admission into hospice care. This is completed by an RN. This RN may or may not be your case manager depending on agency policy.

Once the Initial Comprehensive Assessment is completed, you are on a specific schedule. That schedule is mandated by CMS. CMS requires that, at a minimum, a Comprehensive Assessment is completed every 15 days. This is the trigger to assign you an RN Case Manager.

Some agencies will use an LPN/LVN as a case manager. This can be done, but an RN will still have to make a visit at least every 15 days to complete the Comprehensive Assessment.

The IDG/IDT

The nurse is not the only member of the hospice team. The CMS guidelines designate 4 required members of the Interdisciplinary Group/Interdisciplinary Team. Also known as IDG/IDT.

This group is made up of a Medical Director that is either an MD or DO, an RN, a Medical Social Worker and a Chaplain. Without these 4 members, a hospice agency is non-compliant and subject to disciplinary action.

The IDG/IDT is required to meet every 15 days to review all the patients on service. During this meeting the Medical Director will hear from the RN, Chaplain and Social Worker. They work together to create and adjust the overall plan of care for each patient.

As a patient or caregiver, you do have the right to attend this meeting. I would only recommend such action in the most extreme of situations. Your nurse, social worker and Chaplain are perfectly capable of handling whatever needs that may arise. Still, it is not widely known that you have a right to attend this meeting, so now you do.

Hospice includes 4 levels of care

Routine: Most patients enter hospice on routine level of care. This care is provided wherever the patient calls home. This includes nursing homes, assisted living facilities and residential care facilities.

Respite: Caring for a loved one who is on hospice can be exhausting. Due to caregiver fatigue, hospice providers are required to provide respite services. To provide the caregiver with a break, the patient is placed into a Medicare or Medicaid certified facility for 5 nights.

Continuous Home Care: Sometimes, symptoms can get out of control. When this happens, your hospice agency can initiate Continuous Home Care. Continuous can include a nurse and a nurse aid, but the majority of Continuous Home Care is provided by a nurse per Medicare regulations. Once the patient’s symptoms are back under control, the patient will return to Routine Care.

General Inpatient Care (GIP): When symptoms cannot be managed at home, Inpatient Care can be provided by the hospice agency. Inpatient Care, like Respite, must be provided in a Medicare or Medicaid certified facility. This can include long-term-care facilities as well as a hospital or a hospice owned facility like a Hospice House. It should be noted that the GIP level of care is not for patients when they are dying. Hospice Houses and other GIP facilities are for uncontrolled symptoms. Once those symptoms are under control, the patient could be returned back home for Routine care. Even if they are in their final days of life.

Certification and benefit periods

There is one person, and one person only who determines your eligibility for hospice services. It is the hospice Medical Director. The IDG/IDT will discuss your case during the 15 day meetings, and the Medical Director will use this information to make his decision, but ultimately, he is the one who will write and sign the Certificate of Terminal Illness (CTI). This document is ultimately what allows you to remain on hospice.

There are benefit periods with hospice care. You do not have to do anything to manage the benefit periods. Still, I think it is helpful for you to know about them.

The hospice benefit periods are broken into 2 ninety-day benefit periods and then unlimited sixty-day benefit periods. Prior to each benefit period, your hospice case manager will gather data from your case and present it to the Medical Director for review. The Medical Director will then write the next CTI so you can remain on hospice.

Sometimes, patients do get discharged from hospice for being deemed no longer terminally ill. This is rare in hospice, and the national rate is around 20%. There are a lot of factors that play into this. Rather than try to address live discharges here, I recommend you discuss this with your hospice provider.

I could go on for quite a while trying to explain all of the CMS guidelines for hospice care. What I have provided above should be adequate for this series. Should you have any questions please feel free to ask them in the comments. I will answer them as best as possible.

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Your are reading Part 1 of my series, “What to expect from your hospice nurse.” You can catch the entire series by visiting the landing HERE.

Recently I wrote THIS ARTICLE with advice on choosing the right hospice provider.

I had a couple comments with suggestions to write an article reviewing what someone should expect from their hospice nurse.

In general, this blog has been about “Telling Stories and Helping Nurses.” I have never considered this website as a place to educate the general population on hospice care.

Over the last few weeks I have realized that a series on what to expect from your hospice nurse could serve two purposes. I can educate the community, and I provide what I believe is best practice by hospice nurses in general.

What to expect from this series

This series will not be an exhaustive review of hospice care. In the next article I will review some of the general guidelines as they pertain to your nurse’s behavior.

Not all hospice providers are the same. Each organization has different policies that operate within the Medicare general guidelines. This means that I will be providing suggestions and ideas that I believe are best practice. Through this blog and my podcast, I have discovered that a majority of hospice providers will also agree with this series.

Just because I write a few articles on what you should expect from your hospice nurse, does not mean this will be your experience. Much of what I will be sharing is not mandated by Medicare, but rather what I believe is best practice.

This series is what I have taught numerous nurses here in Kansas City. It is also what I teach nurses in my private community, and what I have covered in my podcast.

I will release one article per week on Saturday mornings until the completion of the series. I can’t give you a total at this time because I’m still generating ideas for articles.

The final outcome

My hope for the final outcome of this series is two fold.

The main purpose is that you, the hospice patient or family member, will have a deeper understanding of what it means to be a nurse who works in hospice. This series is called “what to expect from your hospice nurse,” but, by the end, you will also know, “what not to expect from your hospice nurse.”

As a by-product of this series, I hope a few hospice nurses will feel encouraged and empowered by this series. As a hospice nurse, it is easy to find ourselves at the bottom of the rabbit hole of hospice care, looking up and wondering to ourselves, “How did I end up down here and miserable?” It is really easy for hospice nurses to completely lose ourselves in this work. We easily develop genuine feelings for our patients. This can cause a complete dismantling of our personal boundaries. By the end of this series, I hope hospice nurses find empowered to rethink some of their habits and reboot their career in hospice.

In closing, I hope you will take a couple minutes and share each episode of this series to your social media account. I won’t get anything financially from the sharing of this material, but I will get the feeling that comes with helping the community at large have a deeper understanding of hospice care. That’s reward enough for me.

A few new subscribers would be nice to have as well! 😉

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