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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James

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