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