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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