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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James

James worked on-and-off as an LPN for over 20 years. In 2014 he completed a bridge program and became an RN. James became a hospice nurse in January 2015. He lives in the Kansas City area with his wife of over 30 years, 4 daughters and 2 sons in law.