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.
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.
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.
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.
Your are reading Part 7 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.
Hospice care can happen wherever you call home. This means that your hospice nurse can take care of you anywhere you have residence. This can be a senior living center, an assisted living facility or even a nursing home.
Why have hospice in a nursing home?
It may seem redundant to have hospice care in a facility that already has 24/7/365 nursing services.
If you consider all of the articles I have written up to this point, I have shown how robust hospice care actually is. This series should also show how complicated it can be to care for a dying person. Then if you consider the fact that 15%-20% of nursing home patients either qualify or are on hospice, this means that a large portion of nursing home patients need the increased care that a shortened life expectancy represents.
As a hospice patient starts to decline, their needs increase. While the nursing home does have RNs, LPNs and CNAs, they don’t generally have a chaplain to address spiritual needs, and they (generally) only have one social worker.
Simply put, hospice patients can have a lot of needs that are (somewhat) outside the normal flow of nursing home activity. You might think that nursing homes are just full of dying people, so nursing home nurses should be just fine. This is not true. Only some of them are dying. Most of them call it “home” because their medical needs are just too complicated to remain in the community.
So, what do hospice patients need that is so special? Hospice patients get a lot more visitors than regular residents. This means even more questions for facility staff. Often times, funeral arrangements have not been made. Sometimes there isn’t a DPOA who can make decisions once the patient is incapacitated. Hospice patients have a lot of increased psychosocial needs because, well, they’re dying and most of the time they’re scared.
From the nursing side of things, the nurses in the nursing home can have 20, 30 or even 40 patients they are responsible for every day. At night the ratio can get even higher. This means that most nursing home nurses just don’t have the time in their day to address every need that a hospice patient may experience. Having the ability to pick up the phone and request a visit from the hospice nurse can be a huge benefit.
A hospice nurse can rearrange her day to make a special visit to address a significant change in condition. The nursing home nurse still has many residents to care for, and she can’t spend the kind of time a hospice nurse can spend at the bedside.
Your nurse does not own the nursing facility where you live
I’m sure this sounds pretty obvious, but I can tell you from experience that, sometimes, hospice nurses get treated like they own the nursing home and can just wave a magic wand to change how the nursing home does things.
Please understand something. I’m not saying that nursing homes don’t know what they are doing. Nursing homes have certain state mandated regulations they must follow. This means that your hospice nurse cannot just do whatever she wants. The hospice must follow the same guidelines that the facility has to follow. What may be allowed at your home may not be allowed in a nursing home.
Hospice is not in the nursing home to take over your care. Hospice is an extra layer of care on top of what you are already receiving from the nursing home.
This means that your nurse cannot (and should not) do anything without first consulting facility staff. This is because your hospice nurse, and the facility nurses should work together to provide your care.
You may be tempted, at times, to try to put your hospice nurse in the middle of any problems you may be experiencing with the nursing home. You may think, incorrectly, that your hospice nurse has enough authority to correct or fix facility related problems.
Your hospice nurse has no authority over how the nursing home works. Your best solution when problems arise is to ask for a Care Plan Meeting.
A care plan meeting in a nursing home will have facility and hospice staff involved. Generally, the facility will send someone from nursing leadership, the social worker and any specialty services such as dietary or rehab. The hospice will usually send the RN case manager and the social worker. Other members of the IDT/IDG may attend depending on any concerns that will need to be addressed.
The meeting should be pretty straight forward Hospice staff will answer any hospice related questions, and facility staff will answer any facility related questions. Hospice should not try to “fix” what the nursing home is doing, and the nursing home should not try to “fix” what hospice is doing. They should both work together to address your needs.
In some ways hospice in a nursing home can become more complicated than it is at home in the community. It can be especially complicated if you are receiving hospice care at home and have to be moved to a nursing home due to increased care needs.
The key is strong communication from all three entities. The more everyone communicates with each other, the less likely they are to experience problems.
It is my STRONG opinion that the majority of the communication and understanding needs to be the responsibility of the hospice. Nursing homes have a certain way of doing things. It is up to the hospice to conform to the style of the nursing home. Not the other way around.
Your are reading Part 6 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.
A few years ago I took over a patient from another nurse. As we were discussing his case, the daughter explained to me how she handled medication refills with the previous nurse.
“I visit my dad on Saturday mornings. I fill his pill box for him. When I run out of medications, I will take a picture of the bottle and send it to you so you can get it refilled.”
I gave her the same answer I give other patients, and family members, when they let me know they will be trying to contact me on the weekends.
“I will see your text message when I return to work on Monday, and will let you know I got your message. I turn my phone off after hours.”
She was in total shock.
“The other nurse would reply on the weekends and answer any questions that I have.”
I let her know this would not be the case with me. She was very upset that I would not be available anytime she needed me. We eventually got everything worked out.
This is a common problem in hospice. Today we are going to discuss a very serious issue that exists in hospice.
Your nurse should have boundaries
Many nurses struggle with maintaining their boundaries. We got into this work because of our compassion. We tend to be very relational, and we take this work very personally. If something happens outside of our control, we can quickly start to blame ourselves.
I still remember my first week in orientation back in 2015. I was blessed to start out with an amazing mentor. His name was Mike, and we remain friends today.
I’ll never forget when I said to him, “I want to do the death visit for every one of my patients.”
I still remember what he said.
“James, you don’t realize what you are saying. You will be taking care of a lot of dying people. You won’t have the hours in your life to attend every death.”
Mike was so correct. Over these last 8 years I have cared for hundreds of dying patients. There is no way I could have done the death visit for all of them. I would have to trade in all of my personal life. I would have burned out so quickly.
Since then, I have made boundaries a very high priority in my career. In general, I do pretty well.
Your nurse is not the only nurse
Hospice is a 24/7/365 service. This means that hospice is required to have nurses available around the clock.
Smaller agencies will require their case managers to pick up after-hours shifts, and larger agencies will have an entirely separate team of nurses who will handle all after hours needs.
For someone who has never had a hospice experience, this might seem kind of obvious. For a hospice patient, or their caregiver, this concept can find its way to the back of their brain quite quickly. It’s especially forgettable if they have been on hospice care for a while, and they have never needed any after hours help. They can easily get tunnel vision and only see their hospice care as services provided by their nurse and the hospice aide who helps with the bathing.
As the patient’s health declines, and new symptoms make an arrival, it’s almost instinct to try and contact your nurse even if it is 11pm in the middle of the week.
For the nurse who doesn’t seem to understand the importance of turning off her phone once the day is complete, there will be late calls from the patient or their caregiver looking for quick answers. In the moment, the patient can feel like they are the only person in the world. They don’t even think twice about sending a text message or trying to make a phone call to their nurse during weird hours.
The very best thing your nurse case manager can do is have her phone off after working hours. It will force you to look elsewhere for the help you need. It should lead you to call the hospice office. You will then be directed to after-hours help. The after-hours nurse is best equipped to help you during a crisis when the office is closed.
How does hospice work after hours?
Now that we have determined that your nurse needs her private life, let’s discuss how after-hours needs are handled. After-hours help is provided by RNs and LPN/LVNs. Not all agencies handle on-call the same.
For example, the agency I work for now has an answering service that receives the call for help. They will take your name and number and page a triage nurse to call back. This triage nurse does not make visits. She will just try to help solve the problem over the phone. If she is unable to solve the problem, she will call the visit nurse and send her out.
Some agencies may skip the answering service and the triage nurse. The phone call may go straight to one nurse who will try to help over the phone or just make a visit herself.
I think it’s just important for you to understand that, in general, most hospice agencies don’t have a bunch of nurses sitting round with nothing to do. No agency can afford to do that and remain in business. Medicare just doesn’t pay enough to staff that way.
Medicare just requires hospice providers to be able to make a visit within one hour when it has been determined that you need a nurse visit.
You should never expect hospice to respond as quickly to your needs as calling 911. It’s just not a reasonable expectation.
I do want you to understand something important about calling hospice after hours. If you believe you need a nurse to visit, then you should feel the freedom to state that need directly.
Nurses are human, and sometimes we are tired. That means that we will sometimes try to solve something over the phone that actually needs a visit. Please be patient, but also be direct. If you think you need a nurse to visit, and you feel like that need is being ignored, just state directly that you want a nurse to visit immediately. Most agencies will accommodate you.
Let’s land the “boundary” plane
Okay, to round out this part of our series, I want to just hit some bullet points when it comes to boundaries, and what is the most healthy behavior.
No money should be exchanged. You’ll be tempted to give your nurse gifts or even money during special occasions or holidays. Please don’t do this. It’s awkward, and could really lead down some bad roads. Your nurse could start to feel like they owe you something in return. I’ve been there. It can become horribly uncomfortable over time. Someone could feel like they are owed something. Let’s just not do it, okay? If you want to do something special for your nurse, send a note of gratitude to their organization. This means more than you could ever imagine. Words of encouragement go much further than gifts or money.
Your nurse should have her phone off except during business hours. The only exception is if she is taking an on-call shift. Even then she should ignore any phone calls or text messages that do not come from the office. You need to be trained on how to handle your after-hours needs. Your nurse should totally ignore you after 5pm and before 8am Monday-Friday. She needs her down time.
Your nurse should not be eating your food or drinking your beverages. I know it’s tempting to want to provide your nurse with these kinds of extras. It’s just not appropriate, and it can serve to blur the professional and personal lines. You may give your nurse water if she looks like she’s about to need hospice herself. Other than that, please refrain from feeding hospice staff. Think of us like a stray cat. If you feed us too much, we might stick around longer than you wish. 😉
Don’t expect your nurse to come to the funeral. Okay, so this rule is not a hard-and-fast rule. Some nurses do choose to attend funerals and memorial services. Other nurses choose not to attend these activities. You may feel the desire to invite your nurse to memorial services and funerals. In the event your nurse does not attend, please do not take it personal. I believe that we all have a limited amount of ourselves to give away. We should all consider the cost of getting tool involved in our patient’s and family’s lives.
Hospice is emotional for everyone. Your nurse got into this work because of her deep seeded love and compassion for others. She is ultimately responsible for her professional boundaries. I hope this article has helped you understand how challenging maintaining boundaries can actually be.
Please don’t forget that there is plenty of help available to you, and you should never be afraid to get help from the hospice organization when you need it. Please avoid the idea that only your hospice nurse has the skills and abilities to help you. Your hospice nurse isn’t alone, and she has a lot of team members who can also help meet your needs.
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.
Your are reading Part 4 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.
Today, we are going to discuss your hospice team. I made slight mention of your hospice team in part one of the series. Today, I will provide you with some additional information.
Your hospice nurse does not work alone
It is important for you to understand that hospice does not consist solely of your nurse. There is an entire team of professionals (and lay persons) who are also available to assist you. It is important for you to be aware of this so you don’t develop too much dependence on the nurse. This can happen easily because you will see her the most.
To begin this article, I’m going to introduce you to the most important member of your team. This person is even more important than your nurse.
You have a caregiver
This article has to start with the realization that hospice, in general, is supportive care.
Hospice is there to help, but when you are admitted to hospice, you will be required to choose a caregiver. There are very few requirements to be a caregiver for a hospice patient. Someone just has to agree to the task. This can be a family member, or a close friend. Even if you are functioning well, you need to find someone who will be there for you as you decline and lose the ability to care for yourself.
Many people believe that, at some point, hospice will provide them with twenty-four hour home care. They may also believe that they will be placed in a hospice facility once they can no longer care for themselves. Again, this is not the case. I would direct you back to “Part 2” of this series to review the Four Levels of care that hospice provides. None of these levels include twenty-four hour care for an extended period of time.
As I review the rest of the hospice team, keep in mind that their goal is to educate, empower and encourage your caregiver as they walk this journey with you. Your caregiver will provide the majority of your care as you decline.
In the event that you do not have someone willing, or able, to be your caregiver as your health declines, you have a few options. You can hire private caregivers to care for you in your home. Private home care is generally cost prohibitive. The other option is to be placed into some kind of residential care facility with twenty-four hour care.
Regardless of what you choose, hospice will not be at your home around the clock when your care needs escalate beyond your ability, or the ability of your caregiver.
With that out of the way, let’s go ahead and review the rest of your hospice team.
The Nurse Case Manager
As I mentioned in Part 2 of this series, you will be assigned an RN who will be your case manager. She is the central hub of your care, and she will be primarily responsible for your medical care. She will make visits (at least) weekly to assess your physical condition, and communicate your needs to your primary care physician. That physician will giver her orders, and she will assist you or your caregiver in carrying them out.
My next article will be dedicated to the subject of your nurse case manager. For the purposes of this article, you just need to know that she is your primary contact for hospice.
The Hospice Aide
If I were a hospice patient, this would be the team member I would anticipate the most each week.
Hygiene plays a huge role in how many hospice patients feel. A shower, bath or sponge bath can bring such a sense of well being. The hospice aide is totally optional, but they can really take a load from your caregiver. Most generally, the hospice aide will come 2x per week to provide hygiene services. In general, they are not housekeepers. Some agencies do utilize them for general housekeeping and meal perpetration. This varies widely between agencies.
For the most part, hospice aides make visits with a focus on washing and bathing. This is not someone I would ever recommend you decline.
The Medical Social Worker
You will have a social worker assigned to you as part of your hospice team. Medicare requires that this social worker perform an initial assessment within the first five days you are on service.
There are some misunderstandings with the social worker. In my years of hospice I have encountered a few patients and caregivers who were afraid of the social worker.
I think a lot of people think the social worker is there to scrutinize the care and look for problems in the home. Maybe they even think the social worker is looking for reasons to report activities or actions to authorities.
This could not be further from the truth. The social worker is a resource specialist. They can help you with getting help for anything that is not medical in nature. They can assist with completing things like Durable Power of Attorney for Medical Care as well as help complete applications for additional services provided by state agencies. They can also help with finding caregiving options when needed as I described above.
Your social worker will generally visit monthly, but they will visit more often as needed to help you work through any social issues you may be experiencing.
The Hospice Chaplain
I’m not sure there is anyone less understood in hospice care than the chaplain.
Too many hospice patients and caregivers refuse chaplain services. They have a lot of reasons. Maybe they aren’t religious. Maybe they have their own minister who comes and visits regularly. If they were in the military, then they associate the chaplain with fatal injuries and death.
Let me clear all of this up and explain why you should allow the chaplain to visit.
I have found most chaplains to be great listeners and companions. They are “active listening” specialists. They are great at connecting with patients on a human level. They aren’t there to proselytize or convert anyone to their own faith. They will pray with you if you want prayer. They can read scripture if that is what you want. They will just sit and visit and provide companionship if that is what you need.
Most importantly, they are another set of eyes and ears who can help you, and the rest of the hospice team, catch problems and changes early.
The Bereavement Coordinator
Medicare requires that all hospice agencies provide bereavement services. Bereavement services start at death and run for thirteen months. Smaller agencies will use either the social worker or chaplain to be the bereavement coordinator. Larger hospice agencies will have a full-time bereavement coordinator.
The Medical Director
All hospice providers have at least one medical director. As I mentioned in part 2 of this series, the medical director is either an MD or a DO.
You are not likely to ever meet the medical director. Hospice is not set up by Medicare for the medical director to actually make visits to see the patients. The ratio of physician to census is just generally too high. This isn’t something that is even expected by Medicare.
Some medical directors will go out into the field and visit patients, but these are in extreme circumstances only. It’s not something you should ever expect.
The Volunteer Coordinator
As of the writing of this article, we are still coming out of the COVID-19 pandemic. For the last 3 years, Medicare has waived the requirement to provide volunteers for hospice patients.
Because of this waiver, most hospices have few, if any, volunteers on staff. Most hospice providers are currently working to rebuild their volunteer program in expectation that Medicare will remove the waiver very soon.
Once volunteers return to full status, your hospice provider will be able to provide some limited companionship visits with volunteers. These volunteers are not able to provide any kind of physical care. They are not a replacement for your caregiver. What they can do is sit with you for a limited time while your caregiver runs errands. They can read to you, or play games or just visit. Everything volunteer based is subject to availability And organizational policy.
Ancillary staff
No hospice office is without ancillary staff. All organizations staff their office differently. Most commonly there is an administrator, a clinical director and an office manager. These ancillary staff members provide oversight and other essential functions. They are available to you via phone should you experience service failures or have other needs.
Miscellaneous services
Depending on the size of your hospice, they may have some miscellaneous services. These services could include a massage therapist, a music therapist or other similar therapies. These types of services are not mandated by Medicare. Most hospice agencies do not have these types of services.
Hospice is a robust service, but it is not designed to completely replace those closest to you. As your health changes, the team I describe above will be there to help you and your caregiver navigate all the challenges that may arise.
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.
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.
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.
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.
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.
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.
Ondansetron – This medication is used for nausea and vomiting.
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.
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.
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.
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.
