Your are reading Part 11 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.

in the world of hospice care, there really are very few expectations on the patient. I think that is one of the reasons I love bing a hospice nurse. Hospice is very patient centric. For the most part, whatever the patient wants, the patient gets.

Hospitals are pushy. They don’t have much of a choice. Insurance companies are calling the shots. The patient is expected to only have so many days for whatever procedure or illness.

I can’t sit here and tell you I know everything about hospitals and insurance. Still, I’ve been in medicine for most of my life, and I can tell you that there is plenty of pressure to get people in and out of the hospital as quickly as possible.

All of that goes away when you enter hospice care. At least, it should all go away. If you are anywhere near me it does go away, because I don’t believe in it.

This is your story

I love hospice because it’s all about the patient. You, as the hospice patient, don’t have to do anything you don’t want to do.

Isn’t that freeing? Aren’t you fed up with being told what to do by doctors and nurses? Aren’t you ready to just live the way you want to live?

If you have a terminal disease, and you’ve done everything possible to extend your life, don’t you want the last few months of your life to be the way you want?

Do you want healthcare that is dedicated to your comfort based on what you find important?

At its very core, that is what hospice is supposed to be. If you are on hospice care, the only thing that can be expected of you is that you allow your RN Case Manager visit you and complete a comprehensive assessment weekly. Technically you don’t have to see your hospice nurse more often than every 14 days, but that can be a hardship on the hospice agency. Let’s not do that. Otherwise, it’s your show!

Your hospice nurse should never argue with you

Nurses like to fix things. It is what we are taught in nursing school. Find a problem and fix it. Even if the patient doesn’t want it fixed, fix it anyway.

Because of this, we get pushy. Sometimes, unfortunately, we will get pushy and try to impose our will upon our patients. We don’t mean to do it.

Don’t be afraid to have things your way. If you want every unpleasant feeling reduced and controlled, then that is what you should get. If you are into all natural, and you want to refuse all controlled medications, then make sure to tell your nurse.

If your nurse can’t seem to understand that you want things a certain way, don’t be afraid to contact the agency office and request a replacement. It isn’t rude or mean. Some nurses and patients just can’t figure things out. It has happened to all hospice nurses.

Your nurse is not the hero in your story

Okay, I’ve explained this in my podcast and during a previous hospice related series on this website.

Many nurses (I’m the worst) have a hero complex. How can we not have a hero complex? Over the last three years (COVID-19) that’s all we have been told. Yay first responders! We are special!

Well, I think first responders are special, but when it comes to your hospice experience, we are not the hero in your story.

Your caregiver is the hero in your story. As I mentioned in part 4 of this series, you will have a family member or friend who will be by your side when you take your last breath. As important as your hospice nurse is, nobody is more important than your caregiver.

Your caregiver will go through the gauntlet with you. He or she will do the exhausting work of caring for a dying person. It is a monumental task, and only death itself is more grueling.

I was recently reminded of my place in a hospice patient’s story

I was working the weekend on call. I had been at the patient’s side several times over the weekend to help manage symptoms and assist family. During my last visit, I noticed the patient starting to breathe shallowly. I stood up and got the attention of the daughter in the room.

“Is his breathing becoming more shallow?” I asked.

“Yes,” was her reply. “Should I go and get my sister?”

“Yes I think so,” I replied.

Everyone came into the room. I was standing at the foot of the bed. As the room filled up, one of the daughters motioned everyone to give me some room. This instantly felt uncomfortable to be.

“This isn’t about me,” I thought to myself.

I quickly moved away from the bed and motioned for everyone else to get in close to the patient. They stood by his side as he took his final breaths. I could not even see his face, so I could know when he passed , and it didn’t matter. I would do my part to get the time of death once everyone was ready to do so. It didn’t matter the exact time he passed from this world to the next.

What was important is that his family could all be close to him and take in the moment. I had no business being accommodated during such an emotional and intimate moment.

Hospice is about you and your family

As I draw this series to a close, I want you to understand that hospice is about you. Hospice is about what you want the last days, weeks or months of your life to look like.

Hospice exists to help you navigate this time, but as I have mentioned before, this is your experience. This is your care plan. This means that hospice is supposed to respect and honor your wishes no matter what they might look like. It doesn’t even matter if your hospice nurse agrees with your decisions.

At the end of your life, I want you to choose hospice to be there to help you, and your family, navigate the most difficult event you will ever face.

Ultimately this is your story, and it is up to hospice to make sure your story ends the way you want it to end. I hope this series has helped you understand what to expect from your hospice nurse and the agency she represents.

Your are reading Part 10 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.

Everyone reading this article right now is dying. Even the guy writing these words is dying. Death is awaiting us all. Nobody can escape it.

Over the last eight years I have learned that everyone is dying, but not everyone is dying at the same speed.

Your nurse has the impossible task of trying to predict your death. She won’t be able to give the day or time, and please don’t expect her to do so, but she does have the job of tracking your decline in a whay that provides her with a general idea of when your end is close.

Today’s article might seem a little dark at first. I wrote the previous three paragraphs to make it as dark as possible to start, so the rest of this article won’t seem quite as depressing.

The Last 7 Days

Medicare really encourages increased visits for hospice patients in the last three days of life. I believe that waiting till the last 3 days of life to increase visits is a little too late and really hard to predict. I have found it more effective to start increasing visits when I think my patients are in the last 7 days of their life. The last 3 days are just too close to the end for me to really provide what I think my patients need.

In this article I want to provide you with what I (generally) see in the last 7 days of life. I hope to cover some of the challenges you, or your caregiver, might face.

I will remind you that this is generally speaking. I just recently had a patient who died with absolutely no notice. He was his (hospice) normal self on Friday, and the next day he went to take a nap and didn’t wake up. This is not what I usually experience with my hospice patients, but it does happen often enough to remind me that death, ultimately, cannot be predicted.

Food and Fluids

Oral intake is the biggest indicator that someone is nearing the end. When someone is in their last 7 days of life, I will usually see a dramatic drop in the food and fluids they are drinking.

When I was a kid I remember hearing that someone can only live 7 days without food and 3 days without water. In eight years of hospice I have seen this be wrong more times than I can count. I have watched patients live up to 14 days with no food or water.

In general, my patients stop eating first, and will stop drinking water a few days later. They usually stop drinking the water because they get sleepy from the lack of nutrition. As I mentioned in my LAST ARTICLE the cessation of food is not a painful activity. It’s perfectly natural. Everyone does it eventually.

It can be challenging to know if you should, or should not, try to give food or fluids when the end of life is close. My advice is that if the patient cannot actively participate in the activity, you should not attempt to give food or fluids. If someone can’t let you know if they want food or fluids, it is best to not try to administer them.

IV fluids are a terrible idea

I can’t write this article without mentioning this. I have been asked more times than I can count if I was going to get an IV started during the last week of life to hold off dehydration.

This can sound like a great idea to the lay person until we start to analyze the idea.

Trying to manage an IV at home is an exercise in futility. All hospice patients are dehydrated. All of them. This problem alone makes it impossible to try to have an IV at home. Have you ever been really sick with the flu and had to go into the ER to get fluids? You’ve been vomiting for days, and now you want an ER nurse to get an IV going to start fluids. All your veins are shrunk up do to dehydration. The nurse may have stuck you multiple times before she could get a good line.

It is even worse for hospice patients. Hospice patients have been slowly dehydrating for weeks. Trying to start an IV on them is just going to cause pain and injury.

Even more serious is how the body is likely to respond to a sudden influx of fluid into the vascular system. It would be easy to overload the heart and kidneys and cause the fluid to just build up in the lungs causing increased chest congestion. The fluid is likely to come pouring out of the patients mouth. This is not a pretty sight.

Dehydration at the end of life is not painful. Using a moistened sponge on the lips will provide plenty of comfort. Dehydration at the end of life just causes increased lethargy. It’s okay to let nature take its course and avoid the IV.

Oxygen is not necessary for comfort

Oxygen doesn’t just prolong life. Oxygen can also prolong death.

As someone progresses towards the end of life, their oxygen levels in the blood will decline. This can be measured with a pulse oximeter that can be purchased just about anywhere. I’m not encouraging you to purchase this device. I just want you to understand that it is easy to measure oxygen in the blood. Most hospice nurses carry one of these devices with them to all their visits.

Oxygen levels dropping does not cause discomfort. Like other problems I have mentioned in this series, low oxygen levels cause increased lethargy. Your oxygen going down is most likely to make you even more sleepy.

Some patients will experience feelings of “air hunger” at end of life. Rather than applying oxygen, it is recommended to administer morphine. There are a lot of articles and information online for how morphine can help alleviate feelings of air hunger at end of life.

Feel free to click HERE for a google search of this topic.

When should oxygen be used or stopped?

So, let’s cover when to use oxygen at end of life and when to remove it.

Most patients who wear oxygen at end of life have actually been using oxygen for a while already. At end of life, patients who already wear oxygen will want to continue to do so. This is because wearing oxygen is a psychological comfort to them. Removal of oxygen can cause them to be anxious. For a while oxygen has been a life saving necessity for them. In the early stages of their decline and movement towards being unresponsive, they will want the oxygen to stay in place.

Once a dying person is no longer responsive, the oxygen can be removed. This might be a sensitive topic for some people. Removing oxygen at the end of life is not killing someone. Eventually, it won’t matter how much oxygen you pump into someone, they will still die. Oxygen does not guarantee continued life. Sometimes, oxygen just makes someone die longer than is needed. I have removed oxygen from a dying person many times to see them pass peacefully just a few minutes later. Removing oxygen at the very end of life is humane thing to do.

This can be a very sensitive thing for some family members. I would recommend a conversation ahead of time so everyone is on the same page. If anyone is against the removal of oxygen, it is okay to leave it on. It’s not worth a family fight at such a sad time.

Nurse visits in the last 7 days

There can be some variety when it comes to your nursing visits in the last 7 days of life.

At the very minimum, you should expect your nurse to visit at least daily in the last 5-7 days of your life. This is when you need your hospice nurse the most.

Some agencies will require more than once daily visits by nursing staff. Some will require twice a day visits or even three times a day visits. This is a question I would encourage you to ask early in your care. You need to know what to expect when the end is close.

What will my nurse be monitoring in the last 7 days?

The most common symptoms at end of life are pain, shortness of air, confusion and excessive oral secretions.

Please understand that the dying process does not necessarily cause pain. It is disease processes that cause pain. This is why some patients will need a lot of pain medicine at end of life, and some patients may need very little or no pain medication at end of life. Your hospice nurse won’t start pain medication unless it is obvious there is pain to be treated.

I would encourage you to return to part 3 of this series and review the comfort kit. These medications are what your nurse will want to access in the last 7 days of your life. These medications are what will control the most common symptoms that may appear,

With each daily visit, your nurse will review how much medications your caregiver has had to administer to keep you comfortable. At this time your nurse may need to consult the hospice physician and schedule medications to be given around the clock to make sure you stay comfortable.

As I discussed in part 3 of this series, these medications are not used to hasten death. They are used to help keep you comfortable.

At what point will hospice stay until death?

I get this question quite a bit. It will usually come from the patient or the caregiver. They want to know at what point will someone from hospice stay at the home permanently until the patient dies.

As I mentioned in part 4 of this series, hospice is supplemental care. This means hospice isn’t meant to replace friends and family. In part 2 of this series I discuss the 4 levels of hospice care that are required by Medicare. A couple of these levels do provide for extended care by the hospice provider. I would encourage you to return to that article to see what services are available from your hospice.

Your hospice provider is not required by Medicare to make sure someone is present when you take your final breath. There are a few hospice agencies who will try to provide someone to sit with their patients when they are in their last 24-48 hours of life. This is very agency specific, and should not be something you expect.

Predicting the last week of life is not always obtainable, but there are some warning signs.

Any dramatic changes over a short period of time can be an indicator that the end is close. A big change in level of consciousness or a sudden stop in oral intake can be some of the most obvious signs. Increased confusion or sudden decrease in vital signs can also be an indicator that someone is close to the end.

Ultimately, nobody can predict the exact time or date. Your nurse will do the best she can, but it’s just not something anyone should try to guarantee.

For even more on the last 7 days of life, I would encourage you to listen to Episode 16 of The Hospice Nursing Podcast. In this episode I spend an hour providing hospice nurses with information on how to handle their patients at end of life. Click HERE to listen from this website.

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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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Your are reading Part 8 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.

For this installment, we need to discuss your medications. There is a very high chance you are on a lot of medications that no longer serve you the way they did when you started taking them. During your admission cycle, your hospice nurse will want to talk with you about some of your long-standing medications.

The real reasons your nurse wants to stop some of your medications

So, your nurse has been told to convince you to stop some of your medications. She knows this will be a very challenging and even stressful conversation. She knows this because she has tried it before, and many of her patients got kind of upset about it. She was unsuccessful, and the medical director or nurse manager will want to know why.

There are a couple reasons that some of your medications need to be stopped. I’m going to deal with the most important reason first. Towards the end of this article, I will explain the second reason.

Which medications should be discontinued and why?

Okay, so I’m not going to be able to hit every single medication in this one article. What I’m going to do is hit some categories of medications and explain why your nurse, and the hospice team, may want to stop them.

I’m not a physician, and I’m not your physician. Don’t follow any of the information I’m about to provide without first consulting your community physician or your hospice nurse.

1. Vitamins and other supplements

This may not seem like a big deal to you. Most hospice physicians see these meds as completely unnecessary. If you have a life expectancy of less than a year, then these pills have probably completed their usefulness in your body.

Your bones are as strong as they are ever going to be by now. That vitamin you are taking to maintain your bone density, will not be able to hold back your disease process.

This will be the case for most, if not all, of your vitamins or supplements. Even those iron pills you are taking have very little chance of increasing your body’s ability to carry oxygen. They are more likely to contribute to your constipation than benefit you.

I find vitamins and supplements the biggest detriment with my dementia patients. Most dementia patients can’t really express their needs or how they are feeling. Very often they are unable to let their caregivers even know if they want to stop taking these medications. I also believe having a large list of vitamins and supplements to take every morning can interfere with a patients appetite.

Imagine trying to down 6-8 vitamins every morning when your appetite is already very poor. Now you have a glass or two of water on top of several vitamins and supplement. Your caregiver shouldn’t exactly be surprised when you aren’t feeling hungry.

2. Blood thinners

Okay, so hospice nurses can get really big push back when they try to convince you to stop taking blood thinners. Most patients taking these drugs have been on them for a while, and they are afraid to stop them for fear of blood clots that could cause an event.

I totally understand this fear. When you were started on these blood thinners, it was in your best interest. Maybe you had a stroke, and now your blood needs to stay thin so it doesn’t happen again. Maybe you have had atrial fibrillation for years, and your blood thinner is keeping you from developing a blood clot in your heart.

These are appropriate reasons to be on a blood thinner. These reasons are there for your safety. A loose blood clot in your body is a life threatening event to say the least.

So why should you stop these if your hospice nurse asks you to stop them? It is likely because you are at high risk for uncontrollable bleeding. The main source of uncontrollable bleeding is a fall. Most hospice patients are very high risk for falling. A hard fall while on a blood thinner can easily cause death, and hospice patients have a reputation for falling a lot. And I mean A LOT.

As your health declines, your risk for falling goes up. Many hospice patients have a higher risk of falling and bleeding than they do for getting a blood clot after stopping blood thinners. There is actually a scale your hospice physician uses to determine if you should stop your thinners. This isn’t an arbitrary decision.

Your hospice physician will still put you on a dosage of aspirin to thin your blood a little. This is plenty adequate to provide some protection from a blood clot while minimizing the chance of bleeding with a fall.

3. Respiratory related inhalers

This is another really fun one to convince you to stop. There are very few hospice patients as anxious as our respiratory patients. Who can blame them? There is nothing more terrifying than not being able to breathe. I think we can all agree to that!

Here is the problem, though. As your respiratory disease progresses towards end of life, your lung capacity greatly diminishes. Take it from a nurse who has been listening to COPD patients since the early 90s. People with pulmonary disease move very little air in their lungs. Especially those who are on hospice.

What does this have to do with inhalers? I’m glad you asked!

First, to get the most benefit from your inhaler, you need to be able to take a very deep breath and hold it for at least 5-10 seconds. That may not sound very long to the casual reader, but for someone with end-stage lung disease, this is just impossible. Not because they will pass out or something, but because they are more likely to just having a coughing fit right away. They will get virtually none of the medication intended because they have immediately coughed it out.

The second reason is lung capacity. End stage pulmonary patients have very little lung capacity. Even if they can hold their breath for the needed 5-10 seconds, their deep breath to take in the medication isn’t very deep at all. The inhaled medication is very unlikely to make it to the lower lobes of the lungs where it is needed the most.

I have mentioned listening to lungs a lot. Most of the time I describe the lower lungs of my patients as “absent” when I’m doing my documentation. This means that most of my lung patients only breathe with the top half of their lungs.

So, this is depressing. Now what do we do about your inhalers? Do we just stop them and wish you the best of luck without a substitution? Well, of course not, but don’t sit there thinking your hospice nurse is stopping something you really need. Those inhalers aren’t helping you, and they probably haven’t been helping you for a while. You won’t die the first day you stop taking them, because you aren’t dead now. Instead, listen to your nurse explain what will help you.

The very best help you can get is from your nebulizer machine and an oral steroid. The nebulizer machine will let you sit and relax while getting medicine as deep into your lungs as possible. It takes time to get to the lower portion of your lungs, and a single puff on an inhaler isn’t going to get it done. Sitting for 10-15 minutes with a nebulizer will provide the immediate relief from shortness of air that you need. The oral steroid will help keep those airways open.

Nebulizer treatments won’t last as long as the inhalers did when your lungs were not as deteriorated, but the immediate relief is what you need, and you won’t be able to get that from your inhalers. With the exception of your rescue inhaler, the rest of your inhalers were never meant from immediate relief. They were meant for overall lung health. Sadly, most respiratory patients are past the point of most inhalers being beneficial.

4. Statins (meds to lower cholesterol)

I’m not going to spend a lot of time on this one. Most hospice patients have outlived the usefulness of statins. I’m not a scientist, so I can’t speak to all the attributes of this category of medications. All I can say is that once someone has less than a year to live, taking this medication is just spending unneeded money. These medications don’t lower cholesterol to the point of prolonging life during end-stage disease. It’s just another pill in your stomach.

5. Insulin

Okay, this is worth mentioning (thank you Simone).

Having tight blood sugar control at end of life is next to impossible. Hospice patients have fluctuating appetites. This means that how much a hospice patient is going to eat with each meal is completely unpredictable. Giving a long-acting insulin expecting someone on hospice to eat a full breakfast can be dangerous. More than one hospice patient has had to be rushed to the hospital in the middle of the day because they weren’t hungry enough to eat breakfast, but they took their full dose of insulin at bedtime.

Many hospice patients come off of the long-acting insulins permanently once their appetite becomes unpredictable. It’s just not safe to take long-acting insulin when we can’t guarantee the correct breakfast will be consumed.

When on hospice care, we are trying to focus on quality of life over quantity of life. We can’t control how much longer we have to live, but we can control if the time we have left is enjoyable. Higher blood sugars are not as uncomfortable, or life threatening, as low blood sugars. It’s not harmful for a hospice patient to have blood sugars that range from 250-350. Many diabetics don’t even feel strange when their blood sugar is high, and we are no longer worried about the long-term effects of high blood sugars.

6. Antihypertensives

These are the medications your physician started because of high blood pressure. Over a 20-30 year period, high blood pressure can cause damage to major organs.

Many hospice patients start to become hypotensive as their body fails. There are several reasons for this. The most common one I have experienced is due to decreased activity. Hospice patients are just less active due to the severity of their disease. Once the blood pressure starts to be low routinely, your nurse is going to want to taper you off of these medications.

Also, in my experience, hospice patients benefit slightly from an elevated blood pressure. Not blood pressures that are pushing the 200mmhg mark, but blood pressures that are running more like 140mmgh-150mmhg are not dangerous, and sometimes, can provide a slight boost in energy. You won’t be leaping tall buildings, but you might feel a little better if your blood pressure isn’t in the tank.

Anything that causes you to feel uncomfortable is not okay, so if you need to be on blood pressure medicine to “feel right” then just keep going.

What is the second reason you mentioned above for stopping these medications?

So, your nurse doesn’t want to bring up the second reason. I don’t like bringing it up either. We don’t like it because it can get everyone worked up. Still, it’s a real reason, and it’s okay to talk about it.

Some of the medications I mentioned above are just stupid expensive. Is that a reason alone to stop a medication? No it is not. Everything I mentioned above is true and accurate. Some of your medications need to be stopped because they don’t help you, or they could actually hurt you (like blood thinners if you fall). But, due to their expense, your hospice nurse may try to push a little harder than you think they should.

You might be thinking that you haven’t been paying that much for the medications I mentioned above. You have just had a copay and Medicare picked up the rest.

Once you enter hospice care, Medicare stops helping to pay for your medication. The full retail price of the medications hospice is covering fall straight to your hospice provider. This means that something you might only pay $25 for might cost your hospice provider $495.00.

No hospice provider wants to pay $500 for a medication that isn’t even helping you or could even harm you if you fall. Hospice doesn’t “just get reimbursed” for whatever they are doing for you. Hospice actually just gets paid a daily rate for your hospice care. This daily rate varies slightly from state-to-state and even city-to-city due to economics. For example, here in the Kansas City area the daily rate is around $150.00/day. That’s not A LOT of money when you consider the entirety of the services hospice provides. I think it’s useful information when discussing the economics of hospice care.

As I have mentioned before, this is your care plan that is being executed. You cannot be forced off some of the meds mentioned above. Many of them are not useful once you are facing the end stages of your disease. I hope this article will help you look at the above medication categories differently.

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