Your are reading Part 9 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.

Your hospice nurse has a lot of information swirling around in her head. The longer she has done this work, the more information she has.

I have commented to my wife many times how stressful it is to know so much, and not always being able to share it with my patients or their caregivers. Much of what your hospice nurse knows is unpleasant. This means that she will hold some information back as long as she feels like you will be resistant to the information.

Some nurses really struggle with this. As soon as we see a problem, even if it is a potential problem, we want to blurt it out. It is the experienced hospice nurse who can read the room and share what she is thinking when the time is right. For some patients and caregivers, it can feel like the timing will never be right.

In this article, I hope to share some things with you that your nurse will be the most anxious to tell you about.

Your hospice nurse knows the future (sort of)

The most common question your hospice nurse gets is the most difficult of all questions. Not every patient or caregiver will ask this question, but a very high percentage will ask.

“How much time do I have left?”

This is the ultimate question, isn’t it? It’s a question we all have if we were to be honest. The older we get, the more we think about it. Once someone is placed on hospice care, this question becomes top of mind.

The fact is, your nurse doesn’t know the answer to this question. There is no crystal ball she can peer into and discover when the end will be for you.

As your health declines, there are some things your nurse can predict will happen. She can also predict what your responses might be to these changes.

Your hospice nurse knows you’ll stop eating

Everyone stops eating eventually. Everyone.

Eating is more than just a necessary activity for nutrition. For thousands of years meal time has also been a social activity. For most of us, the dinner table is how we connect with our family at the end of every day.

Most of our holidays are spent gathered around the table for the consumption of food. Christmas, Thanksgiving, Independence Day, Memorial Day, Labor Day, Birthdays, anniversaries and so on.

Food is more than just food. Food is family, friends and neighbors. Food is how we measure our days, weekends and lives. Food is more than just nutrition. Food is a habit. Food is the biggest habit we all have.

Eventually everyone stops eating. Everyone! Nobody is eating when they die from a terminal disease. Most of the time, they stop eating days or even weeks before the end.

Your hospice nurse knows cessation of food doesn’t hurt

Many caregivers are afraid of starvation at the end of life. This is what causes them to consider a tube feeding. They assume, incorrectly, that stopping eating will hurt. This is an incorrect assumption. People in hospice care don’t starve to death. Not in the way you might think.

Starvation is a real thing in the world. There are people starving to death in third world countries. This is not the same thing hospice patients experience. Hospice patients stop eating over time. Their appetite decreases as their disease progresses. A slow decrease of food and nutrition to the point of total cessation is not a painful process. The feelings of hunger go away completely. The lack of food and fluids just causes increased lethargy, not pain.

Pain with real starvation happens because of the inconsistency of the frequency of meals and the wide variations of the nutritional quality of meals.

The cessation of nutrition can look different for many diseases. When someone has their mental capacity, they can easily community their nutritional wishes. Many diseases will completely remove the desire for food as they near the end stages.

Cessation of food Is most difficult for the patients who cannot communicate their nutritional desires. This is the case with many neurological diseases that attack the mind. The list is long and extensive. It is much too long for an article like this. The end result for many neurological diseases is the same. The patient either stops eating, or their swallow gets so bad that they can’t eat safely.

This moment becomes a challenging crossroad for caregivers. Many of them will elect to have a tube placed in the stomach for liquid nutrition.

Your hospice nurse knows tube feedings make things worse

It is impossible for a tube fed patient to achieve the same nutritional status as someone who can eat a normal diet. Even with tube feeding a hospice patient will continue to lose weight and be malnourished. Liquid nutrition out of a box just cannot achieve the same results as the 5 food groups. It’s artificial. Nothing artificial can compete with the real thing. Our bodies were never designed to live on liquid nutrition alone.

Tube feedings make things worse because, most of the time, the patient can’t actually communicate how they are feeling as a result of the tube feeding. They can’t tell you if the nutrition is making their stomach upset. They can’t tell you if they are having nausea. They can’t tell you that they aren’t hungry.

Most tube fed patients I have cared for have digestion problems. This results in increased vomiting and acid reflux. Many patients are started on a tube feeding because they have lost their swallow function. They were getting pneumonia frequently because food was going into their lungs instead of their stomach. The same thing can (and usually does) happen with a tube fed patient. They will have reflux, but because they can’t swallow anymore, the tube feeding will go into their lungs when they reflux into their mouth rather than back into their stomach. Many tube fed patients can’t even cough anymore. This means that they won’t cough up the tube feeding when it goes down the wrong “pipe.” The food just goes quietly into the lungs.

A tube feeding won’t stop the dying process. It will just make it take longer, and frequently, it can cause even more discomfort.

When you (or your loved one) no longer wants to eat, your hospice nurse won’t be surprised. Just follow her lead, and she will help you though the process.

Your hospice nurse knows you’ll be tempted to go to the hospital

Not everyone in hospice is 100% ready to die. In my experience only about 10% of patients who enter hospice are truly ready for their end of life experience. Everyone else is afraid.

Of course most everyone is afraid of death. We’ve never done it before, and we can’t talk to anyone who has. Death is a scary thing. We don’t have to pretend that it isn’t a little frightening.

As your health declines, you are very likely to be tempted to call 911 and return to the hospital. If you have been sick for a while, calling 911 is something you have done many times when you started to decline.

Your hospice nurse is going to try and talk you out of it most of the time. Why does she want you to stay home? Because she knows that whatever the hospital does will be temporary.

If you go to the hospital, they will address your immediate needs, then they will send you back home and you will (probably) be back on hospice services. You’ll feel better for a little while, but the hospital is not able to resolve the underlying problem. Whatever disease caused you to need hospice in the first place won’t be fixed. The hospital will just have used very aggressive measures to help you feel better. They didn’t cure anything.

Going back to the hospital will just cause you to experience decline from your disease more than once. Your hospice nurse is trying to save you from this experience. When you are tempted to call 911 and go to the hospital, please consider sitting with your nurse and having an honest conversation first. It could save you from a lot of frustration.

Your hospice nurse knows you might fall and want surgery

Hospice patients fall. Hospice patients fall a lot.

There is never a more tempting time to call 911 than after a fall. Especially if it is obvious you (or your loved one) has suffered a serious break.

A major fall with a severe break can speed up a hospice patient’s timeline from months of life left to only days of life left. Many caregivers will choose to send their loved one to the hospital to get the break repaired.

This may make sense to you, but it won’t make sense to your hospice nurse, and here’s why.

Your hospice nurse has seen this before. She knows that a trip to the hospital to have a severe break repaired does not usually result in a normal return home on the same end of life timeline. She has seen most of her patients never return home at all. They will often die while in the hospital or at the nursing home they were sent to for rehab.

A major injury is just usually too much for a hospice patient to survive. They are already just too compromised. You can’t rely on the hospital to make this kind of decision for you. Their job is to fix things even if the fix won’t last very long.

You don’t have to go to the hospital after a fall with a major injury. Your hospice nurse can keep you comfortable at home, or she can help you get GIP hospice care in a facility.

Your hospice nurse knows a lot. Your hospice nurse has seen a lot. Some of what she recommends may not make a lot of sense to you. She has seen most of what you are experiencing before. Trust her. Listen to her. Don’t be afraid of the hard conversations she wants to have with you.

Your hospice nurse knows the future. You will too if you listen to her.

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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.