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.

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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.

1. 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.
2. 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.
3. 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. 😉
4. 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.

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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.

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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.

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Your are reading Part 3 of my series, “What to expect from your hospice nurse.” To gain full perspective, I encourage you to start from the beginning by visiting the series landing HERE.

Now that we have what to expect from the series, and the Medicare guidelines out of the way, it is time to debunk some of the misunderstandings I run in to every week.

Your hospice nurse isn’t trying to kill you

Some of you might find it strange that this is where I am going with this part of the series. Unfortunately, many people all over America misunderstand what hospice is all about. Today, I hope to clear up some of the fog.

Hospice does not hasten death

The United States does have some “Right to Die” states in the union. The purpose of this series is not to debate or even render an opinion on “Right to Die.” What I am here to help everyone understand is that nowhere in the US does a hospice nurse administer medications with the sole purpose of ending someone’s life. This activity is illegal in all 50 states. Right to Die states require that the patient administer those medications to themselves, and hospice nurses are given the right to decline to even be present for this activity.

There are actually studies that show patients frequently live longer when they elect hospice care.

American Family Physician
Journal of Pain and Symptom Management
New York Times

This is just three examples. A quick google search will reveal a lot of studies and articles from reputable sources that contradict the idea that hospice care will hasten death.

Articles are boring. I included these to just provide some backup. Let me share my own experience and how I help my patients understand why they may feel like hospice hastens death.

The best place to start is the comfort kit. Unfortunately, many people associate death on hospice with the medications we use.

Understanding the comfort kit

Your hospice provider will want to have a “comfort kit” delivered to your home for emergency use. This kit has medications to use for symptom management. Let’s take a walk through the kit now. Please note that different agencies provide different medications in the comfort kit. This list will go from most likely to be in the kit to least likely. Your agency may provide them all. Your agency might only include the first 3.

1. Morphine – Yes, your comfort kit will have morphine in it. If you have never taken morphine, this might be scary. Especially if you have ever watched a war movie. Your favorite character just got shut up by the enemy. While he is lying there, one of his friends stick him in the leg with some morphine. He may even get stuck more than once. Then he dies. Can I submit to you that he didn’t die from the morphine? He died from his wounds. It’s the same thing in hospice. Our patients don’t die from the morphine. They die from their terminal illness. It should also be noted that morphine is the exact same opioid strength as hydrocodone. If you have ever received hydrocodone following a surgery, then you have had an equivalent dose of morphine. Five milligrams of liquid morphine is exactly the same as a Hydrocodone tablet. Morphine is great for pain or shortness of breath. Morphine does not hasten death.
2. Lorazepam – Lorazepam is also called “Ativan.” This medication is a benzodiazepine just like “Clonazepam” or “Valium.” It will help you feel less anxious and more relaxed. It is also great for muscle twitching or uncontrolled seizures. It can also make you sleepy.
3. Hyoscyamine – This medication has several uses. Most commonly it is used to control oral secretions. The most common term for the excessive oral secretions at end of life is the “Death Rattle.” The death rattle makes an appearance when the patient stops swallowing saliva. The saliva glands continue to make saliva, and it collects in the back of the throat. The patient can breath through this just fine. In my 8 years of hospice care, I have never had a patient aspirate and die because of the death rattle. This medication will help a little, but it will not stop the saliva glands completely. The patient will not experience discomfort from the death rattle, it is just very disconcerting to listen to.
4. Ondansetron – This medication is used for nausea and vomiting.
5. Haloperidol – This medication has been around for decades. It has several uses. It is a sad reality that many patients will experience something called “Terminal Restless” in the last few days of life. Terminal Restlessness most commonly reveals itself as severe confusion with hallucinations. Sometimes the confusion can get so bad that the patient will try to climb out of bed even though they are no longer able to stand. Haloperidol will help clear the fog and allow the patient to be more relaxed.
6. Tylenol Suppositories – Tylenol is for more than just pain. Some patients will develop a fever during end of life. This does not necessarily mean they have an infection. Most generally, the body is having a hard time regulating temperature as the organs fail. Tylenol suppositories can be used to reduce fever at end of life. Before using Tylenol suppositories, you should consider cool compresses on the back of the neck or under the arms. Not all patients remain comfortable when being moved around a lot at end of life.
7. Dulcolax Suppositories – Increased use of morphine will cause the digestive system to slow down. These suppositories are a last resort for severe constipation. There are plenty of oral options that should be started long before a suppository is needed.

Now, I encourage everyone to perform their own study of all these medications. Please be aware that some of them are contraindicated for certain age groups or certain disease processes. None of these contraindications are of concern when someone is in their last 7 days of life. In the last days to hours of life, the focus is on comfort and safety. Safety and comfort have priority over the long-term affects of some of these medications. For example, Haloperidol is contraindicated in patients who have Parkinson’s disease partly because long-term use of Haloperidol can cause uncontrolled muscle movements. For the last few days of life, Haloperidol can be used for Parkinson’s patients who are having bad terminal restlessness and are in more danger of harming themselves than having increased uncontrolled muscle movements.

How does your nurse help you live longer?

Since I have made the statement that hospice doesn’t hasten death, let’s discuss how your nurse will help prolong your life.

Before you’re on hospice, what happens when your health starts to decline? You reach out to your doctor to set an appointment to get seen. In general, you’ll be setting an appointment that is a moth or more out. Maybe you have a better relationship with your doctor, and you can get seen next week.

What if you start to have some problems overnight and need help as soon as possible? Now you’re headed to the ER in your car, or worse, in an ambulance.

Eventually, you will end up back in the hospital. Most likely, by the time you get there, your health has really gotten bad. Who knows what kind of permanent damage has occurred because of this delay in care. When you are in hospice, the timeline to getting real medical help is a fraction of what you are used to getting.

Your hospice nurse is visiting you weekly. She will catch all kinds of problems early and often. She can, most of the time, get you medications and medical equipment same day. This will all happen while you are sitting in your recliner and exerting zero energy. It’s a beautiful thing! Now you are getting treated days or even weeks sooner than through any other way. Every time your nurse walks in the door it is like you are at the doctors office. She has a direct line to a physician who can provide orders same day.

Why did my family member die 3 days after going on hospice?

So, I just spent a bunch of time telling you that patients live longer while on hospice care. Your experience might include a family member who died just a few days after entering hospice care. This can cause many patients and family members to be fearful and associate hospice with a quick death.

Everyone’s hospice journey is different, American healthcare comes with many life-extending treatments. This provides all patients with many options when considering how to treat their life-limiting illness. Some patients will engage all their options until the last possible minute, and some patients will forgo many of those treatments and elect hospice earlier in their disease process.

Patients who choose aggressive treatments until the last possible minute will have a very short hospice experience. Patients who decide to access hospice care much earlier in their disease process will have a longer hospice experience.

Regardless of which option you choose, diseases are the cause of death, not the comfort measures used by the hospice team.

To close out this article I want to leave you with this closing thought. It is something that I believe gets sugar coated way to often by hospice providers.

Hospice is end of life care

Regardless of what you have read or heard, hospice is end of life care. There is no version of hospice that is for patients who are not dying. I have heard too many liaisons/marketers tell patients, “Hospice is not what it used to be. You don’t have to be dying to be on hospice.” This is just not true. To be on hospice care, the hospice doctor has to submit, in writing, that you have 6 months or less to live. Some patients live less than six months, and some patients living longer than six months.

If you are reading this article, and you are on hospice, and you find this last paragraph confusing, I have some advice for you. I would recommend that you find the paperwork you signed to start hospice care. That paperwork will be quite clear on what you actually signed up for. At some point, it will mention that you have chosen comfort care only. This means that nobody on your hospice team is expecting you to recover or get better.

Not understanding what hospice really is does contribute to the idea that hospice hastens death.

Your hospice nurse isn’t trying to kill you. She just wants you to have a peaceful passing.

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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.

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Your are reading Part 1 of my series, “What to expect from your hospice nurse.” You can catch the entire series by visiting the landing HERE.

Recently I wrote THIS ARTICLE with advice on choosing the right hospice provider.

I had a couple comments with suggestions to write an article reviewing what someone should expect from their hospice nurse.

In general, this blog has been about “Telling Stories and Helping Nurses.” I have never considered this website as a place to educate the general population on hospice care.

Over the last few weeks I have realized that a series on what to expect from your hospice nurse could serve two purposes. I can educate the community, and I provide what I believe is best practice by hospice nurses in general.

What to expect from this series

This series will not be an exhaustive review of hospice care. In the next article I will review some of the general guidelines as they pertain to your nurse’s behavior.

Not all hospice providers are the same. Each organization has different policies that operate within the Medicare general guidelines. This means that I will be providing suggestions and ideas that I believe are best practice. Through this blog and my podcast, I have discovered that a majority of hospice providers will also agree with this series.

Just because I write a few articles on what you should expect from your hospice nurse, does not mean this will be your experience. Much of what I will be sharing is not mandated by Medicare, but rather what I believe is best practice.

This series is what I have taught numerous nurses here in Kansas City. It is also what I teach nurses in my private community, and what I have covered in my podcast.

I will release one article per week on Saturday mornings until the completion of the series. I can’t give you a total at this time because I’m still generating ideas for articles.

The final outcome

My hope for the final outcome of this series is two fold.

The main purpose is that you, the hospice patient or family member, will have a deeper understanding of what it means to be a nurse who works in hospice. This series is called “what to expect from your hospice nurse,” but, by the end, you will also know, “what not to expect from your hospice nurse.”

As a by-product of this series, I hope a few hospice nurses will feel encouraged and empowered by this series. As a hospice nurse, it is easy to find ourselves at the bottom of the rabbit hole of hospice care, looking up and wondering to ourselves, “How did I end up down here and miserable?” It is really easy for hospice nurses to completely lose ourselves in this work. We easily develop genuine feelings for our patients. This can cause a complete dismantling of our personal boundaries. By the end of this series, I hope hospice nurses find empowered to rethink some of their habits and reboot their career in hospice.

In closing, I hope you will take a couple minutes and share each episode of this series to your social media account. I won’t get anything financially from the sharing of this material, but I will get the feeling that comes with helping the community at large have a deeper understanding of hospice care. That’s reward enough for me.

A few new subscribers would be nice to have as well! 😉

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