Here are a few questions (and answers) that many people have about hospice. Take a look and see if you find what you need. If not, feel free to contact me and I will do my best to answer you.
I should say that I have provided answers here that are true to the best of my knowledge, but my experience is only based upon the work that I have done with the hospice that I work for. It is possible that some of the answers that I have provided will not apply to all situations or hospices. While I strive to be well-educated, I am not an authority on hospice (or much else, for that matter).
What is hospice?
Hospice is team-based (nurse, social worker, and chaplain); it comes to the patient; it provides medications and supplies; and it considers the entire family to be the unit of care. For more information on hospice benefits, check out this post.
In order to be enrolled in hospice, you must have a projected life expectancy of six months or less, and forgo aggressive medical treatment, at least as long as you are enrolled in hospice. For more information on these two requirements, check out my post here.
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.
What if I change my mind and want to receive aggressive medical treatment. Am I locked into hospice?
No, definitely not. Hospice is all about what you want to do. So, if you want to go pursue something more aggressive, you can always be discharged or revoke hospice and pursue treatment in whatever fashion you and your providers agree upon. If you later decide to stop aggressive treatment and want to go back into hospice again, that’s usually not a problem.
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.
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.
You said that my hospice team was a nurse, chaplain and a 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 when needed. You can also seek treatment for illnesses that are not related to your primary hospice diagnosis.
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 usually 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! Thanks for reading 🙂