Category: Hospice Benefits

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FAQ about Hospice, Part 3: The Final Chapter (?)

Greetings!  Today I’m going to wrap up this little series on Hospice FAQ.  It may be something of a hodgepodge, as it’s mainly the bits that didn’t fit into the first or second posts.  But, hopefully after this, you will have a pretty good idea of what hospice is all about.  I’m sure there are some things I haven’t covered, though, so feel free to contact me if you’d like to know something that I haven’t answered.  I will probably put a version of these FAQ as a new page on the blog, so you can refer back to it if you so desire. Starting next week, I will talk about….something else.   We can be generous and assume I will have come up with a topic.  In the mean time, though, here it is…the much anticipated….FAQ about Hospice, Part 3: The Final Chapter!

“What’s the difference between hospice and this palliative care thing I’ve heard about?” Ah, another good question. Excellent, in fact.  It can be very confusing.  The word “palliative” means: “relieving pain or alleviating a problem without dealing with the underlying cause.”  This, of course, is exactly what we do in hospice.  However, there is a branch of medicine called “palliative care,” which is a rather broad, somewhat amorphous (but wonderful!) medical specialty that focuses on pain management.  Any of us in pain, no matter how generally healthy we are, would probably want some palliative care.  You don’t have to have a terminal diagnosis to receive it.  It comes in a variety of forms and programs. Here and here are some nice explanations.  We actually have a palliative care branch to our hospice, which provides in-home pain management to people who do not meet the requirements of hospice.  However, in our program they do have to have a life-limiting illness, which is not always a requirement for all palliative care programs.  Depending on their prognosis and needs, sometimes our patients switch from our palliative program to our hospice, or sometimes the other way around (that’s always nice!).  Palliative care programs are paid for differently than hospice–it’s usually a fee-for-service program, as opposed to an all inclusive program like hospice is.

“So, wait, how is hospice paid for again?”  Hospices receive a standard daily rate for each patient that it cares for. This often comes from Medicare or Medicaid–private insurances may do things a bit differently.  In any case, this standard daily rate will cover whatever services, medications, etc. that you receive from hospice.  This is quite different from the fee-for-service model that most health care is based on, where each each service, visit, medication etc. is paid for separately, and you often pay at least percentage of that.  Hospice often ends up saving the patient a good deal of money because under Medicare the highest co-pay a hospice can charge is $5.

“Wow, that Medicare hospice benefit really is wonderful.  How generous of them!”  Well, yes, it is really wonderful, and it has made a world of difference for many people.  And, get this, it has another benefit as well:  hospice saves Medicare money.  How ’bout that?

“Does everyone in hospice have cancer?” Good question.  This comes  up a lot.  The answer: Nope. Certainly, a lot of hospice patients do have cancer, but not all. Patients with dementia, COPD (Chronic Obstructive Pulmonary Disease), CHF (Congestive Heart Failure) and a variety of other illnesses can all receive hospice services.  At one point, AIDS accounted for many hospice admissions, but now, happily, for many people it can be treated as a chronic disease.  Again, it comes down to a life expectancy of six months or less.  As some diseases have a more predictable timeline (e.g., some cancers) than others (e.g., dementia), it is sometimes hard to come up with a definitive prognosis.  But as long as two physicians (one is usually the hospice MD) certify that they believe a person has a life expectancy of six months or less, then they are considered “hospice appropriate,” regardless of the disease.

“Is hospice just for old people?” Well, you probably already know the answer to that, so I won’t pile on the praise for this question. (In case you were wondering, yes, I made it up myself).  Again, the answer is “nope.”  People of all ages can be in hospice.  But even though the question itself isn’t stellar, this is a good opportunity for me to mention that there are actually pediatric hospice programs that cater to children.  People unfamiliar with this are often somewhat horrified at the thought.  I have found that people usally contort their face in a very consistent pattern when they first hear me mention pediatric hospice.  Yes, it can be very sad to think about, I agree (I think I made that same face when I first heard about it).  But, for children that need that kind of care, it is a real blessing.  In pediatrics, the divide between hospice and palliative care can be very blurry.  While a much needed service, it unfortunately is often not covered by insurance.  This article talks more about that.  The financial end of pediatric hospice is another sad topic.  Because so few children have this covered by insurance, at our hospice, we provide this care for free when necessary.

“Wow, you sometimes provide care for free? That’s awfully nice. How do you make any money?” Why, thank you. Yes, we are awfully nice. And no, we really don’t make any money. We are a non-profit hospice, and most of the funding for programs like pediatric hospice come from kind donors.  There are also for-profit hospices, which have a different financial structure.  All hospices certified by Medicare, regardless of profit status, provide the same basic services, however.  Whether or not it makes a difference if you receive care from a non-profit or for-profit hospice is a matter of great debate, which you can read a bit about  here, or here, or here.  I won’t go into that debate now, but probably will some other time.  While I will say that you can receive excellent care from both kinds,  I do think that you should know that they both exist.

“Why do you keep writing in the first and second person?  It seems like you think that I’m asking about myself, as opposed to someone else.” Well, ignoring the fact that I’m the one who actually made up most of these questions, let me say this: I’m doing it on purpose.  I’m doing it with the hope that on some subtle level, it might make all of us realize that even if we are perfectly healthy at the moment, we are all mortal.  Unless we die suddenly, chances are that one day we may very well find ourselves needing hospice care not just for someone else, but for ourselves.  And, maybe if we start thinking that way now, it might not be as scary when it happens.  Sneaky, huh?

“Yes, that’s very sneaky.  You’re probably the type of person who sneaks broccoli into cookies.  What else are you sneaking in here?”  I don’t put broccoli in cookies; I’m way too lazy to do that.  It’s much easier to just steam it and throw it on a plate.  I do put baby greens in smoothies, but that that’s both easy and blatant as it turns the whole thing green (it doesn’t taste like anything, though).  In all seriousness, I’m not trying to sneak in anything at all.  I will always strive to be up front and honest in these posts, and if I do have a bias, I will let you know.  Indeed, I will admit that I am quite dedicated toward the goal of increasing your comfort with death as a general concept, so consider yourself warned!  See you next week…and thanks for reading.

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Hospice FAQ: Part 2

Well, happy 2014!  I hope that the New Year is off to a good start for you.  We have gotten a lot of family time in around here, which has been lovely, but I think that we are all excited about school starting up again very soon (as I write this, that will be occurring in 36 hours.  Not that I’m counting or anything).  I only have one child parked in front of the TV at the moment; the other is parked in front of a book — a vast improvement over last week.  But enough about me, let us get on with Frequently Asked Questions about Hospice, Part 2.  This will hopefully cover your burning questions that were not answered in my last post .  If not, though, feel free to contact me.  As always, I will try to answer.

“I don’t want to be in pain.  Can you promise me that I won’t be in pain?”  I hear that a lot, and that would be my primary concern, too.  The answer to that question is, generally, “yes.” First, let me say that many of the dying don’t have any pain, even without medication. Regardless, however, managing pain and symptoms is what we focus on.  We can’t promise that you will never be in pain, but if you let us know about it, we can promise that when it arises we will do everything we can to help eliminate it, or at least make it tolerable.  I should add here the standard disclaimer that I make most days, which is: “I am not a nurse or a medical doctor.” I have heard people say who should know (i.e. experts in palliative care) that all pain can be managed, and from what I have seen that is true.  And, usually, this can be done without making you overly groggy or “out of it.”  I add the qualifier “generally” to my answer because sometimes it can be a delicate dance.  In my experience, in very, very rare occasions, the pain can be so severe that it can only be managed by sedation, which is sometimes termed “palliative” or “terminal sedation.”  This is a method of last resort.  I’ve only seen that done once, so I cannot overstate that this happens very, very rarely.  In the vast majority of circumstances, we can ensure that you are awake and pain-free.  I just mention it here in the interest of full disclosure.  The good news is that in general you will be pain-free, one way or another.  Of course, some people say they want to be sedated and just be done with it, but that’s another story (we do not do that, by the way).

“I don’t want to get addicted to pain medication.” Oh, this comes up a lot, too.  Funny you should ask about that!  Well, the short answer is: “you won’t.”  The long answer is a little more involved, and, again–say it with me–“I am not a nurse or medical doctor.” Here’s a nice article that explains the body’s reaction to pain medications during a terminal illness.  But, basically, here’s what I know:  when your body is in pain toward the end of life, it is best to catch it early.  You don’t want to “chase” the pain.  You can get by with a lot less pain medication if you take it as prescribed, rather than wait for it to get really bad.  If you do that, you’ll end up needing a lot more medication to manage the pain than you would need otherwise.  Also, once your pain is under control we can often reduce, rather than increase, the dosage.  Addiction has a strong psychological component to it, which does not come into play for the terminally ill.  When you are terminally ill, you take medications because you need them, not because you want them.

“Okay, I get that I can’t get aggressive treatment for my disease in hospice.  But what if I get an infection of some kind?  Or what if I need something like oxygen?  Can I get that?”  Good question.  The answer, again, is generally, “yes.”  At our hospice we always give our patients oxygen if they need it–most of the time we order it before they need it, just in case.  And yes, in general, you can be treated for infections.  This article suggests that treatment may be limited to infections related to your hospice diagnosis. That, again, is more of a case-by-case type of thing, but at least at our hospice, we routinely prescribe antibiotics when needed.

“You keep mentioning my ‘hospice diagnosis.’ What do you mean by that?” Well, say you have lung cancer and diabetes. You lung cancer is your primary illness, and would be considered your hospice diagnosis. We will provide your medications, supplies etc. for issues related to your lung cancer. You would be responsible for covering expenses related to your diabetes.

“Can I still have CPR in hospice, or do I have to sign a Do Not Resuscitate order?”  This is a great question.  This is often misunderstood, even–I would venture to say especially–by medical professionals. So, thanks for bringing it up!  Yes to the CPR part, no to the DNR part.  The default option for all of us here in the USA is to be what’s called a “full code”–if your heart stops beating or you stop breathing, you want to be resuscitated.  That, as you may know, can be very invasive, and many people in hospice would prefer not to go through that, so they sign what’s called a DNR (Do Not Resuscitate) order.  However, you don’t have to sign that.  In fact, many of our patients don’t.  You can definitely be a full code in hospice if you want to be.  I will probably talk more about this in another post, as I think it’s a pretty interesting topic.

“Speaking of medical professionals, you said in an earlier post that my hospice team was made up of a nurse, a chaplain and an (invariably awesome) social worker. Can I still see doctors?” Yes, absolutely.  You can still keep seeing your primary care doctor.  And, while your primary care will come from the nurse, the hospice doctor can see you in your home as needed.  You can also still seek treatment for illnesses that are not considered your hospice diagnosis.

“Okay, great.  What about….”  Sorry, time’s up.  Too bad for you! 😉 Not to worry, though–just like your favorite young adult literature, this FAQ topic will be a trilogy.  I need to wrap this up for this week.  It is now a full 24 hours later than when I started this post, but thanks to sub-zero temperatures and school cancellation, I still have 36 hours to go before winter break ends.  So, I need to brace myself…er, I mean, tamper my excitement over the unexpected gift of another day with the kiddos at home.  I have been sugar-free for five–FIVE!–whole days now, so I will have to find some other way to deal with this news.  Of course, there are always more Disney movies.  But, I will be back next Monday, and will finish answering the questions I’ve made up for you.  And, if in the meantime you feel like contacting me with some questions of you own, better yet.

“Oh, okay I guess.  I should probably go and eat this deliciously warm brownie topped with peppermint ice cream before it all melts anyway.”  Oooh, that’s my favorite!  Don’t say things like that to me!!  Must…stay…strong…

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Some FAQ’s about hospice, Part 1

For those of you who celebrated Christmas last week, I hope it was a good one. In retrospect, perhaps starting a blog during the holidays was not the most brilliant of plans: I have been too busy enjoying time with family and friends and gorging myself on sugar-based products to do much writing. Having just plopped my girls in front of The Little Mermaid (my 25 year-old self would be mortified), I think I will dedicate the next 83 minutes to answering some frequently asked questions about hospice. Before we begin, however, I should mention that I only have experience with the hospice organization that I work for. I have done my best to research these questions so that they should be generally applicable, but it is possible that there might be some variations between individual hospices, so please be aware of that. Okay, let’s go!

“Where is hospice?” Excellent question. It isn’t actually a place. People are often very confused about this, and I don’t blame them. It’s easier to understand once you realize that hospice refers to a layer of care, not a location. “Hospice” is those services that I discussed in my previous post. The vast majority of hospice patients receive their care at home. They can also receive those services at a nursing home, an assisted living facility, a hospital, or a hospice residence. All of those services I described earlier come to where the patient is, allowing them to be “in hospice.”

“Who pays for hospice?” Another good question. Hospice really flourished when it became part of the Medicare and Medicaid benefits. Hospice is also covered by most private insurance programs. For Medicaid and Medicare patients, the entire cost of hospice benefits is covered, with a few minor exceptions.

“Tell me more about hospice at hospice residences and nursing homes, etc. Are you saying that I can stay there for free?” NO. The hospice benefit does not cover room and board. It only covers the hospice services. So, if you go to a hospice residence or a nursing home–where you can stay for a long period of time–you will still have to pay for room and board, but your medical care related to your hospice diagnosis will be covered by the hospice benefit.

“I need 24 hour care. Can hospice provide that?” Another excellent question. You are on a roll! Basically, again, NO. Not everybody in hospice needs 24 hour care, but for those that do, finding it can be very difficult. If you have to pay for it, it can be very expensive. This is a lot of what I try to help with as a social worker. But, by help, I mean “locate and set up,” not “provide.”

“When you say ‘basically’ it does not cover 24 hour care, what do you mean? There are a couple of exceptions to that “NO.”. One of the many great benefits of hospice is the “respite benefit.” This pays for care at a nursing home or in-patient facility for up to 5 days at a time, and this benefit can be accessed “occasionally” (this is the term used by Medicare). You may be responsible for a small amount (typically 5%) of the cost of the room and board of this stay. The respite benefit is great if your caregiver needs a…respite. Or if your home becomes inhabitable for whatever reason (flood, fire, infestation, etc.).

“Okay, what’s the other exception? And what’s this in-patient thing?” Well, the other main exception focuses on pain-management. As I mentioned in my first post a main goal of hospice is to manage your pain and symptoms. If we cannot do that in your home, you may want to go to an in-patient facility (or IPU, for in-patient unit) to have that done. Some hospices (ours included) have a unit in a hospital that is just for hospice. Or, the in-patient facility might be elsewhere. In any case, it is a place that is staffed by hospice workers who will be able to help manage your symptoms 24/7. The cost of this care and room and board is completely covered under the hospice benefit. Some people prefer not to die at home, and when their time is very close they may go to the IPU. It’s not a long-term solution, however.

“What if I need symptom management but I don’t want to go to the IPU? Or what if there isn’t one to go to?” Yet another good question! The other option is what’s called “Continuous Care.” This is 24 hour care provided in the home by a hospice nurse or homemaker. It is only used in extreme situations, when your pain or symptoms cannot be controlled with regular nursing care. Again, it is not a long term solution, it can only last for a few days, and it requires special approval. To be honest, it’s not something we even generally bring up when we describe the hospice benefits. But, it does exist.

I’m still a little confused about my options and who pays for them. Well, that’s okay. Here’s a nice chart that should help.

“Hasn’t The Little Mermaid ended by now? Are you neglecting your children?” Yes to both questions. It ended a little while ago. Now they’re watching Cinderella. Given that I didn’t let them watch any TV for the first several years of their young lives, this pains me, so I will wrap this up. First, though, I should probably remove the purple hair extension that my five year-old placed in my hair this morning. It’s from her Rapunzel life-sized head that she got from Grandma and Grandpa for Christmas. (It has iridescent hair. It really freaks my husband out.) Those of you who knew me in my younger days may be wondering if this abundance of Disney princess-hood is evidence that I have abandoned all of my closely-held principles. The answer to that question is also yes.

“Enough already about your kids. Are you saying that now I know everything I need to know about hospice? I still have questions.” Nope. I still have a few imaginary questions that I want to answer. Assuming I can keep away from the chocolate and toffee long enough to write another post, next Monday I will offer up FAQ part 2.

“It is so nice of you to do this. Is there anything that I can do for you?” Why, aren’t you sweet! How thoughtful. Thank you for asking. As a matter of fact, there is. If you have questions that you want me to include in FAQ2, please contact me, either below or on the right hand side of the blog. You can also tweet this post or share it on Facebook or whatever else you crazy kids are using these days. Please don’t send me candy, though. I really need to stop eating that stuff.

“Great, I will do that. Happy New Year to you!” Thank you! Happy New Year to you, too! See you in 2014!

© 2013-2024 A.R. Schiller

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Hospice benefits: What’s the point? And what do you get?

Assuming you’ve read last week’s post, you know that in order for a person to be in hospice, they have to have a life expectancy of six months or less, and all treatment has to be palliative (comfort-only). “Well,” you might be thinking. “That sounds kind of awful–it’s a lot to give up. Do I get anything in return?”

Well yes, yes you do. You actually get quite a lot in return.

To illustrate how special hospice care is, let me briefly describe what regular, non-hospice care might look like for someone who is seriously–possibly terminally–ill:

Things are not going well. You are very sick, and in a lot of pain. No one quite knows how to make things better. While nothing really seems to be working, that’s not stopping your medical providers from trying. You feel like crap, but you dutifully go from appointment to appointment, many of which take up the whole day. You’re not able to take yourself, so you enlist family and friends to do that. They may have to help get you down the stairs and in and out of the car. Maybe you’re on oxygen and you have to bring that with you, too. You need prescriptions filled and special equipment. Somebody has to go out and get that. And somebody probably has to pay for it. Maybe you can’t bathe or dress yourself very well anymore. You need to find somebody to do that for you, too. Every single thing you do, from going to the bathroom to making yourself a sandwich to having a conversation, is more difficult because you’re in a lot of pain. And, all along, you don’t seem to be getting better, and you’re terrified. And the people you love are terrified, too. You’re all too scared or upset or angry to support each other. To top it off, maybe you feel like god has abandoned you, too. You feel isolated and alone, and so do the people who love you.

I wish I were exaggerating here. None of us want to be battling a disease that cannot be cured. None of us want to be in the position of being scared, in pain, desperate, and alone. Sadly, though, for some of us, this may happen. Maybe it’s already happened to you or to someone you love. It’s not easy to decide that you’ve had enough, that you are no longer going to fight for a cure, and that you just want to be comfortable and not feel so alone. (Of course, one might argue that even if you continue to fight your illness you should be able to be comfortable and not feel alone, but that’s a post for another day).

Fortunately, if and when you make that decision to stop fighting (and remember, as long as you are alive you’re never locked into it), hospice can take care of the rest.

This is how hospice does it: Hospice is team-based; it comes to the patient; it provides medications and supplies; and it considers the entire family to be the unit of care.

Let me break those four categories down a little bit.

Team-based: Your core team consists of your nurse, your non-denominational chaplain, and your (invariably brilliant, beautiful and witty! 😉 ) social worker. Hospice was always conceived as multidisciplinary: the end of life is a sacred and difficult time, and hospice’s goal is to provide medical, emotional, and spiritual support. (It is worth noting that only visits by the nurse are required–the patient can decline to be visited by the social worker or chaplain.) You may also receive visits from a CNA (Certified Nurse’s Assistant), and/or a volunteer. The nurse’s main goal is to manage your physical symptoms and make sure that you are comfortable (they are really good at that–that’s basically all they do. And that is a lot!). The CNA can help with things like bathing and other personal care. The social worker is there to help access available resources and to provide emotional support. The chaplain, as you might guess, is there to attend to spiritual needs.

Home care: All members of your team visit you where you are, be it your home, a nursing home, a hospice residence, or sometimes a hospital (assuming you’re not there for aggressive treatment). Think about that. No more appointments. No more waiting rooms. You only have to leave the house if you want to. And, hospice care is available 24/7. If you need help in the middle of the night, we will either talk you through it over the phone or a real live person will come right to you and help make whatever it is better. Nifty, huh?

Then, of course, there is all the stuff. Hospice provides any equipment, supplies, and medications related to your hospice diagnosis that is needed to keep you comfortable. It’s all free of charge, and it’s all delivered to you. Hospital beds, wheelchairs, diapers, dressings, your prescriptions…all that, and more. Brought right to your door. How ’bout them apples?

Finally, we consider the family to be the unit of care–that is, we try to help the whole family get through this experience, not just the patient. We don’t, however, provide medications to family members! But again, let’s think about that for a minute. When you go to see a doctor, does the doctor turn to your spouse or child or sister and say, “how are you dealing with all of this, too?” Probably not. You are the unit of care; everyone else is just background. In hospice, however, we support everyone in the family who wants to be supported. Sometimes, as the social worker, I spend more time with the family than I do with the actual patient.

And, get this: Hospice stays on even after the patient dies. Hospices have a bereavement department that follows the family for a year after the death of the patient, and provides check in calls and free in-person counseling if the family wants it. Most even offer free bereavement counseling to people in the community who haven’t even had a family member in hospice. Pretty nice, huh? So, truly, the family is the unit of care.

There are a few other benefits that hospice provides, but I will go into those another time. And, for those of you who still have more questions, like where hospice “is” and who pays for it, I will get to that, too, I promise. If you have a burning question you can always contact me via the sidebar and I’ll try to answer. But, at least you now know what, in general, hospice provides. And, really, if you find yourself in the position of needing to use it, it can make a big difference.

It’s nothing to sneeze at, that’s for sure.

Happy holidays to you and yours, and thanks for reading!

© 2013-2024 A.R. Schiller