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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So, what the heck is hospice, anyway?

I think that most of us have heard of hospice, and I’m guessing that if you’re reading this, then you have some idea of what hospice is (or you’re just reading this because you know me and I asked you to). If not, hold on to your hat: you’re about to find out.

While most people have some general idea of hospice, i.e., care for someone who is about to die, it turns out that most people that I encounter in my non-working life don’t really understand it. Most people seem to think that it is for people who are within days of drawing their last breath. A lot of people think that hospice is an actual place. Somebody recently told me that they thought it was care for very poor people. Before working for hospice, I didn’t understand it well either. I had visited a hospice during graduate school, and my take-away impression was that “hospice“ was a free-standing building that was somewhat quiet and involved a lot of hand-made quilts. Both of my grandparents had hospice, but I was out of state and didn’t get involved in that aspect of their care. I did know that they stayed in my parent’s (finished) basement, and I never saw any quilts, hand-made or otherwise. I really didn’t understand hospice well until I started to work in it. As it turns out, hospice is pretty awesome. In this post, I’ll describe hospice in a big picture kind of way: i.e., who can receive it and what the hospice philosophy is. The little picture view will be provided in subsequent posts.

Big picture, there are two cardinal rules of hospice: Life expectancy and comfort care.

Cardinal Rule Number One: In order to be eligible for hospice benefits (which are usually, but not always, provided by Medicare or Medicaid) a physician has to believe that a person has a life-expectancy of six months or less. The word “believe” is important in that sentence. One of the biggest misconceptions that I come across is people thinking that hospice patients are imminently dying. That is often, but most certainly not always, the case. Some people come to us in their last days, but some people come to us with what their doctor thinks is six months left. Some people with six months left are bed bound and fit the common perception of “hospice.” But some people with six months left are still driving around, going out to lunch, or sometimes even to work. And, sometimes, that six months can turn into a year or two or three. No one here on earth can really predict when a person is going to die. Doctors and nurses make their best guess, and then just see how things go. As long as a person continues to decline, even if it is slowly, our hospice doctor can continue to certify them as “hospice appropriate.”

Cardinal Rule Number Two: Hospice care is comfort care. If you are receiving hospice care, you cannot pursue aggressive medical treatment. That is the price of hospice care. You get our services, but you give up trying to find a cure for your disease. You can continue to see your primary care doctor, or you can choose to have the hospice doctor direct your care, but you can’t go off and have aggressive, or curative treatment, and receive hospice benefits at the same time. In general, you can’t go in and have imaging done, or surgeries, or treatments that are aimed at extending your life or fixing you up in some way. I say in general because there are exceptions to the rule. Some of those surgeries or treatments can be considered palliative–that is, they provide comfort–and so they can be approved on a case-by-case basis. But, essentially, we are there to make you comfortable; we are not there to make you better. There has been recent research showing that people in hospice live longer than those who are in a similar condition but not enrolled in hospice, and I can tell you from my own experience that a good number of our patients perk up a little, or sometimes a lot, when they come to us. Suddenly, they are no longer in pain, they might not be as swollen, they can get around better, their appetite improves, and they can do more of the things that they love. The “regular” medical system focuses on fixing people, and in fixing people, their goal is generally to extend life, even if the pursuit of that goal can make you miserable in the short run. Our goal is to focus on how you are feeling right now. We are really good at making you comfortable right now. Not later, but Right. This. Minute. That is all we do. We don’t think about what our short term solution will do to you a week or a month down the line. You might not be around a week or a month from now. And so, in hospice, our patients need to accept the fact that we focus on comfort in the short term, not a cure for the long term. We expect you to decline, and, at some point, to die. (for more info, see: http://www.medicare.gov/coverage/hospice-and-respite-care.html)

That being said we do not and, indeed, cannot do anything to hasten your death. On occasion, we have people ask us to do that, but we do not do that. That is illegal, at least in the anonymous location in which I live. You are going to live as long as you are meant to live. We are not going to speed you along to the end of the road. However, we are not going to try to slow you down, either. Comfort care is not meant to extend your life though, as mentioned, sometimes that can happen. What we do do is make you comfortable as you approach death. And so, if you’ve accepted that you are are approaching death, comfort is usually what you are hoping for.

The word “if” in that last sentence, though, is a big one. I will leave that discussion, however, for another day. But, on board with imminent death or not, you are never locked into hospice. If you really want to go off to the hospital and have something done, that’s your prerogative. You will just have to be discharged from hospice first. Then, go off and do what you want to do. When you’re done with that, if you are still hospice appropriate and want to come back to hospice, chances are we will take you back. One of the (many) beautiful things about hospice is that it is really centered around what you want to do. We are there to make your life a little better in whatever ways we can. If what we can do does not work for you, then, please, go and do what does work for you. We won’t be offended–promise.

So, that’s what hospice is in general: comfort care for people whose doctors think that they have six months or less to live. Next time, I’ll tell you what hospice looks like: what we provide to our patients and their families. Stay tuned!

© 2013-2024 A.R. Schiller