Angela Hospice Nurse Practitioner Kristina Kosta discusses end-stage heart disease and how individuals can know when hospice care might be appropriate
Kristina Kosta, AGPC, NP-BC
How do you know it’s time for hospice when someone has been diagnosed with heart failure?
Medicare has a list of criteria that has to be met for someone to be ready for hospice. But families don’t have to know that criteria, I just want people to know that it’s all standardized, and includes scientific signs that someone is declining in health.
So specifically, what I look for in heart failure, and what Medicare looks for in heart failure, is usually breathing becomes an issue. So if someone is breathless at rest, meaning that they’re not able to take deep breaths; or they hold very still so they can conserve energy, and then not have to become out of breath, that’s a sign of some functional decline, and that’s one thing to look for.
Another thing is eating. If they’re eating less ꟷ because that can take a lot of energy and also create some shortness of breath ꟷ that’s something to look at. And with that, often comes weight loss. However, there can be swelling in feet and stomach too, which can create difficulty walking, and maybe some falls.
So if you’re noticing decline with those criteria or a couple of those things are happening… those are times that the hospice conversation can come up. Someone does have to be terminal to be on hospice, which means six months or less life expectancy if the disease would run a textbook course.
Nothing is really textbook, but it does give us an idea.
How do you recommend a family approaches that conversation with a loved one that they think might need hospice?
I actually think you don’t have to wait until someone is old and ill to discuss hospice. I think it’s a really important conversation to have anytime. But obviously, if it hasn’t happened yet, and you need something to sort of help precipitate that conversation, and someone is ill, the main thing that I think is really important for people is to know that they have a choice in what they do. So if the loved one is able to make decisions, then directly asking that person, do you want to treat your illness, which probably will mean going back and forth to the hospital, getting things stabilized when you’re discharged. If illnesses are continuing textbook, things will continue to become imbalanced and worse, and you’ll have to go back to the hospital, treat infections and falls and injuries, and things like that. That’s just kind of the normal progression.
If that person is saying, “Yes, I want to continue to live my life as full as possible and do that,” then that’s the choice and hospice isn’t on the table yet. But you’ve had the conversation, and you know that.
The other thing is, a lot of people, especially elderly people, don’t even realize they have a choice. They’re so used to following a doctor in the white coat that’s telling them what they should do, that we forget that we have a choice in the matter. And that’s a really big, serious choice.
People can also say, “No, I’m sick of going to the hospital, I’m sick of having my blood drawn every week, I’m sick of getting blood transfusions or IV fluids. I don’t want to do that anymore, that sort of rotating door in and out.” Then they might say that they want something like comfort care, and that doesn’t mean they’re dying tomorrow, that just means that they’re choosing a philosophy that is more focused on keeping someone comfortable so they can have some joy out of the last part of their life.
For me, it’s much easier because I have that conversation all the time. I like the idea of loved ones bringing that up pretty soon, and asking, do they want the further hospitalizations and just saying, “Hey, I’m going to ask you a serious question, but it doesn’t mean anything, it’s just for my information and for your information, so that we know how to help you in the best way.” Then just go ahead and ask. I usually say, “I’m going to be gently direct. Is that okay?”
Is there an ideal time for someone with this diagnosis to start hospice?
If you have been told by someone, or you think you want hospice, basically, insurance companies say you are eligible for hospice when you’re terminal. Terminal means, that if your disease course follows the sort of normal trajectory, and your life expectancy is six months or less, then you can have hospice care. What I find is, the sooner people get in hospice, the better the experience is for family and for the patient. Basically, what they find is they suddenly aren’t alone, caring for somebody…they might be alone in their house with hospice, caring for somebody, but they have this whole team…
And the other thing I want to say is, if you don’t know, if you feel like your loved one is declining, and you’re seeing changes and you think, “Wow, two months ago, when we had that family birthday, he was able to walk around, and now he can’t…” If you’re seeing something like that, you can call hospice at any time, and you can say, “I don’t know if it’s time.”
They may say, “Well, check with your doctor.” But you still can call back and say, “The doctor is not sure, or the doctor says ‘yes’ or the doctor says ‘no,’ but I’d like someone to come out and evaluate,” then that can happen. A nurse can go out and evaluate and admit, and provide information.
It’s a very loving choice. So I think if we think of it that way, it’s not quite as scary, but you do have to have that prognosis of six months or less.
