Scott Webb (Host): Though many people think of hospice care as end-of-life care, my guest today wants us to know that choosing hospice care for you or a loved one does not mean that you've given up. And I'm joined today by Paula Ludwig. She's the Hospice Director of Patient Care Services for Health First, and she's here to share more about hospice care in general and what patients and families can expect from Hospice of Health First.

 This is Putting Your Health First, the podcast from Health First. I'm Scott Webb. Paula, it's so nice to have you here today. I was doing some preparation for our episode today and I read that Hospice of Health First just received the only five-star rating for hospice facilities in Florida, so congratulations. I wondered if you could tell us about that award, what it means for your organization, and the quality of care you provide.

Paula Ludwig: Thank you very much. The five-star rating is something our staff has worked on for a couple of years now. The star ratings are a little bit newer to hospice, but they have worked very hard on getting to that five-star rating, particularly being the first and only hospice in Florida is very impressive.

The ratings itself is based 100% on family satisfaction surveys that we get back after a patient has passed and the families are able to rate us on our care. That care is anything from pain relief, breathing, anxiety; did we respond after hours? Were we available on weekends? And so, when you put all that together. To me, that means that we have provided excellent care to our patients and families and that they really truly appreciate that and would recommend coming back and using hospice care again.

Host: Right. Yeah, it's quite an accomplishment. As you say, the star ratings are a little bit newer for hospice care, but great to be first and get that five-star rating. And before we get too far along here, Paula, we should probably just kind of have a foundational question. You know, what exactly is hospice care? How does it differ from other types of medical care or treatment like palliative care?

Paula Ludwig: So, hospice care is primarily for when the physician feels like the patient has six months or less to live. The focus changes from more of an aggressive treatment to more of a symptom-based treatment, meaning that we're going to treat all symptoms. We're going to treat a UTI. We're going to treat pain. We're going to treat some emotional needs, but we're not necessarily going to be focusing on going back to the hospital or doing x-rays or doing lab work or lots of physician visits. So, it really is that focus on comfort, quality, and allowing patients and their families to spend time together versus spending time sitting in a hospital with people poking and prodding at them.

Host: Right. Which I'm sure is a comfort, both to patients and families. Let's talk about then the key signals. Like how do we know when it might be time to consider hospice care?

Paula Ludwig: It's really going to vary by the person, but in general, it's typically that person who is no longer responding to treatment. So maybe, it's a cancer patient that their cancer continues to grow or spread even on treatment, or maybe it's the patient who is having more symptoms on treatment than they are getting quality from it. And so, they make that decision that they no longer want to be treated.

It also could be that the family is seeing that the patient is not doing well, or it could be a cardiac or a pulmonary patient who is tired of going back and forth to the hospital. They just want to be able to stay home and enjoy life versus having to go back to the hospital every time they have a symptom that can't be managed quickly and easily.

Host: Yeah, and I've never had to confront this, knock on fake wood here at my desk, but I know that folks do have to have these conversations, right? So, families have to initiate conversations about hospice care with their loved ones. Maybe you can give them some advice on how to initiate that conversation and make it go as smoothly as possible.

Paula Ludwig: I think the biggest part is being open and honest. It's really talking to your family member, your friend, whoever you're caring for. It's being open to having some of those conversations, to asking good questions, to asking what the patient is about or looking in their care plan goals, in their treatment goals. We find a lot of times that patients continue to get treatment, or people continue to get treatment, or go back to the hospital because they think that's what their family members would want. And family members don't want to say no because they think that's what the patient is wanting. So really, having some very open, honest conversations, not being afraid to ask the questions, not being afraid to get the information, and making good choices from there.

Host: Yeah. There's no doubt, especially with hospice care. I'm sure like information is power for everybody involved. Let's do a little myth busting, Paula. I'm sure there are a lot of myths about hospice care. I'll have you bust those myths if you will.

Paula Ludwig: Absolutely. I think one of the biggest myths is that hospice is only for cancer patients, and that is not true at all. For most hospices, their census is only about 20% cancer, so it includes all other diagnoses from CHF, COPD, pulmonary fibrosis, liver failure, renal failure. There's so many different things out there that happen in the medical community that will qualify someone for hospice. It's definitely not just cancer.

The other thing we hear a lot is that hospice is just for the last two or three days of life. They just want to give you morphine and help you die or hasten death. And that is not at all the purpose behind hospice. We may give morphine, but it's due to treat the symptoms. We don't just give it because we really would rather have patients come into hospice six months out so that you can benefit from good symptom management, good treatment plans, the social worker to help you deliver some of that care and understand where life is going to go from here.

Another myth is that you could only have hospice in a facility, and that is not the case. You certainly can be in a nursing home or an assisted living facility at home. We may admit a patient into hospice in a hospital setting or in a hospice inpatient, but it really is wherever the patient and their family want to be is where we're going to opt to provide care.

The other one for me that we look at and we see is that it means you're giving up. You're losing hope. You're taking away the patient's right to make decisions, and that is not it at all. Really, it's about helping the patient make the decision that they want to, that they're looking at stopping aggressive treatment, that they really want to focus on being home, enjoying life, having symptoms managed, maybe getting out to lunch instead of a doctor's appointment. It is truly not meant to give up hope. It's to change your hope. It's to change your outlook. It's to change your focus on where you want the rest of your life to go.

Host: Definitely. Let's go through some of the benefits. I'm sure there's just almost nearly, probably endless physical, emotional, spiritual benefits for families and patients themselves, but maybe you can take us through some of the benefits of choosing hospice care for a loved one.

Paula Ludwig: I think the biggest benefit for hospice care is that we're going to visit you in your homes or your facilities or your RV, wherever you are at, we are going to go to you to do the visits. So, that's a nurse to come by and check your medications, check your symptoms, do that head-to-toe assessment. It's a social worker to support with any type of psychosocial needs or anxiety or planning for the future. It could be a volunteer. Caregiving is hard. Being a patient is hard. And so, having a break, being able to get to the grocery store or do some of those things and not leave the patient at home. We have volunteers who can support with that piece. We also have a visiting physician. Our physicians or our nurse practitioners will go into the home and do those visits so that the patient doesn't have to go out to a doctor's appointment. We're going to assist with any type of medical equipment that's needed to help keep a patient home and comfortable. We're going to help with medication costs by providing those medications. We'll even deliver the medications to the home. So, it just minimizes that patient and family having to do some of those things and be able to focus on each other.

I think the other part of it is that hospice is available 24 hours a day, seven days a week. There is a nurse at the other end of the phone at all times. She's happy to answer questions. They'll visit at 2:00 a.m. if that's what the need requires. We all know that none of us ever gets sick on a Tuesday at noon. It's always a night, a weekend, a holiday when there's not a lot of care available. So, having that 24-hour focus and option is huge for patients and families.

Host: Yeah, huge for sure. And we've sort of establishing here a thread running through this is that it's just a really emotional process for everybody, even the caregivers. So, wondering, how does hospice care address the physical, emotional, spiritual needs of both patients and their families?

Paula Ludwig: Through visits, through phone calls, through follow up, these social workers are excellent at understanding and being able to provide some of those resources both in the community and for themselves and how to address some of those feelings, some of those anti-anxiety, natural type things like breathing and books. We provide a lot of written information on any type of symptom that a patient is undergoing or feeling so that you can get back to the paper, not just have to remember what somebody said. We have bereavement support for afterwards so that the families have an outlet and someone to help them process this new part of life without their loved one.

Host: Yeah. And Paula, we talked earlier about how does someone know that they're ready or how do families initiate the conversation to encourage someone to maybe, you know, consider this, a patient to consider this. Is there a consultation or assessment to determine when someone is ready? And if so, what can folks expect from that?

Paula Ludwig: Absolutely. A patient or family member, a friend, anybody can call hospice 24 hours a day, seven days a week, and just ask some questions, explain what's going on, this is what's happening, get some basic information about services, about what hospice looks like. When the patient and family feel like it's time now for hospice. We do need a physician referral, so the physician would just send over an order to us for us to go out and evaluate. We would call the patient and family. We'll make that appointment to come out at a time that works for them. We'll do a head-to-toe assessment. We'll have a lot of conversations. We'll review medical records. We'll see where they're at physically as well as emotionally, spiritually. Anything that pertains to their well-being at that moment. Then, we'll give that information about hospice, what it would cover, what it looks like, if they're appropriate for hospice, what are some of the other options. And then, it really is up to the patient and family. They can decide, yes, right then they want hospice, or they can decide they want to think about it a little while. We can then leave the home. There's no charge for any of that. It really is just at that point, it's up to the patient, the family. It's their choice. We want to do what's right for them. And so, it is very okay for an evaluation and a cool-off time to kind of get some more information or to think it through. But it's also okay to say this is an amazing service. Let me jump on right now and get signed up so I can begin that support and those services right now.

Host: Yeah, yeah. I'm sure that cool-off period works for some folks, but as you say, others might be like, "Nope. We're good. Let's do this." Undoubtedly, Paula, folks, caregivers are going to probably have feelings of guilt or uncertainty, you know, when they're deciding or when they've decided on hospice care. What's your words of encouragement? How do we help them manage those feelings?

Paula Ludwig: I would say use your team, use your hospice team, ask the questions, try to understand, look for answers, look for options. Mostly, don't be afraid to ask those questions. Don't be afraid to verbalize your feelings. All of that is very important. The hospice team can't necessarily guess what somebody is going through, but they really want to know, they want to understand, so they can help you work through it and process it. That might be a social worker, that might be a chaplain that's helping to come out. It might be a spiritual volunteer, it might be a regular volunteer. It just depends on what that is for you, but making sure that you're taking time to ask the questions, and not be afraid of that piece of it.

Host: Yeah. I feel like in Medicine in general, we should just have a shirt made, "Please ask questions." I just feel like, you know, that if the caregivers, you know, the medical professionals were all wearing those shirts, it might encourage us all to advocate more for ourselves or our loved ones. It might just make it a little easier, right?

Paula Ludwig: Absolutely. And we tell people all the time, write your questions down, because when somebody is standing in front of you, you don't remember what you wanted to ask. You never happen to fill their 30 minutes down the road that you remember. So, ask the questions, write them down so that you remember them.

Host: Yeah, absolutely. You know, we've touched on this a little bit about the support and resources. Well, let's go through in one answer here. Support resources that are available to families both during and after the hospice care process.

Paula Ludwig: That would be your hospice team. So, it'll be your nurse, social worker, the CNA, who's helping with personal care, the chaplain, volunteers, the physician, even your office staff to know that you can call 24 hours a day and get somebody to ask those questions of. So, really utilizing and accessing and not being afraid to ask for help. The team does a pretty good job of being proactive and knowing that this could potentially be the next step. So, offering those things, but it's also okay to ask. Patients and families, you guys know each other, yourselves, your routines, way better than we will ever know that. So, don't be afraid to fill us in on those things so that we can support you the best.

Once the patient has passed, then we do have bereavement support. The bereavement staff are counselors that will visit the home. They will help you process through that grief, understanding where it's coming from, really help to relearn how to live again, which is a big, big challenge when you've lost somebody. There's also lots of support groups available to come and really participate with people who are having some of those feelings and experiences that you are. Knowing that you're not alone, that everybody else is feeling the same way, and how they've gotten through it can be very beneficial in moving forward.

Host: Yeah, definitely. I see the value in helping the loved ones, the survivors, if you will. This has been really lovely today to learn more about, you know, not only just hospice in general, but the hospice of health first and the five-star rating and all of that. Just give you a chance here as we finish up, Paula, just final thoughts, takeaways, something you really want folks to know about hospice.

Paula Ludwig: The biggest thing would be hospice is a choice. It's okay to ask the physician for it. It's okay to get information even if you're not ready for it quite yet, but to have that in your back pocket to be ready to go. Choosing hospice does not mean giving up. It means changing focus to enjoy whatever time is left. Focus on comfort, family, your life, as opposed to getting out to visits and physicians and what treatment is next. Many people wish they had chosen it way sooner than they did. And so, don't be afraid to start getting that information early so that you're ready to move forward when that time comes with that decision and have a comfort level because you've already gotten all that information upfront.

Host: Yeah, I think that's going to be my biggest takeaway, is that it's not giving up. It may feel like it is, but it's really not giving up. It's about sort of changing the mindset, changing the focus, changing the environment, perhaps. Really well said. Thank you so much.

Paula Ludwig: Absolutely. Thank you for taking the time today.

Host: Making the decision to move to hospice care can be challenging, but Hospice of Health First is here to support you through every step. Discover how they can help at hf.org/hospice. And if you enjoyed this episode, please be sure to tell a friend, share on social media, and check out our entire podcast library. We look forward to you joining us again.