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