Dr. Mike Smith (Host): Welcome to Southwest General Health Talk. I'm Dr. Mike. And with me from Southwest General Health Center are Jenny Schumacher, a dedicated hospice nurse, and Autumn Fleming, a hospice liaison. Today, we're diving into the vital, but often misunderstood topic of hospice care.

Welcome to the show. Let's go ahead and start with Jenny on this one. When people hear the word hospice, you know, right there, there's often fear, there's a lot of unknown there. Tell us really what hospice is.

Jenny Schumacher, RN: Hospice is basically a philosophy of care. Usually, people enter into hospice when they have a life-limiting condition. They do not want to seek any more aggressive therapies, or maybe the therapies are no longer working and their disease is progressing. So, time for hospice care, which is, like I said, a philosophy of care. A lot of people have a misconception that it's a place where they have to go. So, we are really striving on comfort.

Host: when this decision is often made, obviously, there's going to be not just the patient involved. There's, you know, the family is there, I'm sure. Jenny, how do you handle all of that? How do you coordinate all these different people that are maybe involved in this decision?

Jenny Schumacher, RN: Yeah. So, it's the patient and their family, and many times we'll meet with— It could be as much as two people to six people, really explaining to them what hospice is all about and the type of services that we can provide. It's really centered on life care, not death care. living your life to the best that you can, guided by the nurse case manager, also with all the services that we have involved that really can help them stay at home and be comfortable. We provide social work, home health aides, volunteers, spiritual care, the hospice medical director, medical equipment, supplies, medications that are all delivered at their home to help them stay at home and to be the most comfortable that they can be.

Host: Autumn, is that something new where hospice is being offered at the home? I know that, you know, hospitals often have a floor for hospice care. Many of them are standalone facilities. But now, we're moving into home care hospice. Is this relatively new?

Autumn Gorgone-Fleming, RN: No. And so, that is a big misconception that people think when you say hospice, that they can't be in their home; when in fact, our goal is to try to keep, you know, patients in their home. Hospice can be done in facilities like nursing homes, assisted livings. Now, we do have residential centers like we have here at Southwest.

We have a residential center that's got 10 beds where patients can come here to either manage their symptoms that they're having and return home, or they can remain here for end-of-life. But home hospice is ultimately what I think patients and their families want. They just think that that can't happen. So, we can do that. And it happens, I guess, more frequently than not that we try to get our patients back into the home.

Host: So Autumn, who is hospice care for and when should someone like start considering it?

Autumn Gorgone-Fleming, RN: So, hospice is when patients have a life-limiting illness that if the illness were to run its course, that they typically have six months or less left to live. And so, a doctor will certify that information. Now, patients can live sometimes beyond six months, and we do see that. But typically, that's what we begin with. Or if it's for patients who treatment is causing more harm than good, and they're no longer wanting to continue with treatment, then they would sign on to hospice.

Host: If somebody goes beyond that six-month amount of time, do they transition out of hospice or do they stay In hospice?

Autumn Gorgone-Fleming, RN: So, it really depends. So, what we do is a nurse practitioner will come out to their home to reevaluate them to see if there's been any change in condition. If there has been a change in condition and, say, they're losing weight now or their mobility is less, they are showing some decline, then we can recertify them to extend that period of time.

And for some reason, if they're not and they're doing well, then we can discharge them from hospice and put them on a palliative program. Because we wouldn't want to keep someone on hospice if it's not going to benefit them anymore. But that is looked into every how often Jenny would—

Jenny Schumacher, RN: They have two 90-day benefit periods. And then, after that, it's every 60 days.

Host: Jenny, what are some of the biggest misconceptions you hear about when it comes to hospice?

Jenny Schumacher, RN: There's quite a lot. I think there was more 20 years ago. I think people have become more educated on hospice care, but some of the big ones are that they have to be a do-not-resuscitate. They can actually come into hospice being a full code. Some of my families, they say, "I really don't want to go into hospice. I want to stay in my home." So, they think hospice is a place they have to go to, where 90% of the patients I understand are actually at home.

Host: That's I think the idea that, you know, somebody, if their heart stops, they're not breathing, they can still get care. I think that, to me, I didn't understand that either. I thought all of that had to be—you know, you have to say no to all of that.

Jenny Schumacher, RN: No, that's incorrect. So, we will have a conversation about that at the time of our assessment meeting, and if they want to be a full code. And it is very confusing, I understand that, but a lot of information is being presented at that meeting. And it can be very overwhelming. So, we meet them where they're at emotionally with this. And then, we'll continue to assess their status, their DNR or their full code status when we go out to meet with them. And a lot of times that's where the social worker comes into play and really speaking with the families and the patients, what their goals are.

So if their goals are to have no more hospitalizations, not to have any more treatments, they just want to remain home and be comfortable, we talk about what a full code will look like. It doesn't look like how you see it on TV. And so, they need a lot of education and emotional support surrounded with that.

Host: You know, Autumn, many families—and I know this because mine is one of them—will often say, "I wish we had started hospice sooner." Why does that happen?

Autumn Gorgone-Fleming, RN: So, I think that happens, and I do see that a lot of the hospital is because they think that their patient or their loved one is giving up hope and wanting to just stop everything. And so, we kind of shift the focus. They're not giving up hope, that they're choosing comfort. They're choosing to not spend what time they have left in a hospital or getting treatment that's causing all these symptoms. And so, we find that after they have enlisted with hospice, they'll tell you they wish they would've started sooner. I've never had a patient tell me that, "Man, I wish I would've had one more radiation treatment or hospitalization stay." They often will say, I truly wish we would've started sooner. So, it's just educating the patient and the families, because the families are the ones that really have a hard time. So, we just provide a lot of education to them.

Host: Yeah. I was going to kind of ask you, in your experience, you see that the patient kind of knows, "i want comfort now. I don't want to be in the hospital anymore." It is the family that struggles. I guess, as you said, that's common.

Jenny Schumacher, RN: Very common.

Autumn Gorgone-Fleming, RN: Yeah, absolutely. And so, we try to tell the families that help them with this decision, because a lot of times patients want to sign on to hospice, but they don't want to give up for their family. And so, just having those meaningful conversations with them, it really makes a big difference.

Host: Jenny, what kind of support does hospice provide beyond medical care?

Jenny Schumacher, RN: It's a lot of support—support by the nurse case manager, by the social worker. Social worker can help them with funeral home planning, emotional distress, with spiritual care; can help with spiritual support and spiritual distress. Like, why is this happening to me? They have the support by volunteers that can sit with our patients while their family has a doctor's appointment.

The support of having all this medical equipment delivered to their home, hospital bed, a bedside commode, a bedside table that will help aid in their comfort. Medications that are covered under hospice care supplies, briefs, pads for the bed, gloves. These are all things that hospice provides for the patients that patients don't have to pay for.

So with the big team, including home health aids that go to the home about three times a week, sometimes more if our patients are actively dying to help with all the personal care because it's very hard for the loved ones to provide that type of care on a regular basis. So with the whole team approach, it helps alleviate some of that stress on the family.

Host: So, you mentioned some of the things that happen at home, right? You got supplies coming. There's going to be the hospice team coming in and out at times. Is there anything specific at the home that the family should do to make this a more comfortable place or spot for the patient?

Jenny Schumacher, RN: I like to tell them to try to keep a very quiet environment, playing soft music, low lighting. If there's a lot of family tension or stress in the home, you know, try to remove that and take it to another room. But really, trying to focus on a calm environment. And I wanted also to add the other added support is access to 24/7 help, even in the middle of the night. We have on-call services that start at 4:30 PM till 8:00 the next day. So if there is a family patient need at 2:00 AM, they can call us. Nurse can come out there to help assess what's going.

Host: Autumn, Jenny has kind of touched upon some of the team members with hospice care. But just to be clear, can you kind of run through who's really involved here? Who's the main person the family's going to see? How does all that work?

Autumn Gorgone-Fleming, RN: Yeah. So, our team, we have a medical director, so we have a doctor. And then, we have the nurses that go out to the home. And so, the nurses work well with the doctor, calling if they need to make a change in any medication. Then, we have a nurse's aide that come out to do personal care. If the family chooses spiritual care, then we have someone that can come out and meet with the families to help navigate that, because this is such a difficult time for them. We have the social worker that can help with emotional needs for the patient and family. We have volunteers, like Jenny had mentioned. If the volunteers can come and stay with a patient, if the family has a doctor's appointment.

So, hospice is, you know, holistic. It's a whole approach to not only help the patient, but we're there to help meet the needs of the family as well.

Host: What about visitors? Is there any restrictions there or should they come at specific times? How do you help families with, you know, friends coming over.

Autumn Gorgone-Fleming, RN: So, we leave that up to the family's discretion how they want visitors to come visit them. I know in the home that would be up to them. Here at, say, a hospice center that we have here right now, visitors can come 24 hours a day as long as the family's okay with that. If there was ever a time that the family members were causing distress to them, then we would just do lots of education. We don't want them to not to be able to spend time with their loved one and visit them. But if it's causing harm or distress, we'll just educate them and the families, and we typically have no issues with that.

Host: Jenny, you know, you've mentioned the point of hospice care a couple times now. Comfort, quality of life, I think was kind of woven in there. How successful is hospice care in these outcomes of comfort and dignity and quality of life?

Jenny Schumacher, RN: In my opinion, I believe it's very successful. I see a lot of symptom control being managed. So if somebody has severe pain being a big one, respiratory distress. For an example, I went to a patient last week. I walked in the house. They were breathing 40 times a minute. Normal is 12 to 20. Immediately, it is getting oxygen on them, giving them a little bit of morphine, which helps with the respiratory rate to get them more to a comfortable level, doing a breathing treatment. By the time we were all done with those symptoms, his respiratory rate was within a normal level. So, having that nurse coming in at a regular basis in addition to the rest of the team, it is very successful getting their symptoms managed to a more comfortable level.

Host: Do hospice nurses go through additional training, coming out of, say, a general hospital ward?

Jenny Schumacher, RN: It's basically orientation at the hospice agency. I came from an ICU setting. After leaving the ICU, I went into hospice. I had no training prior to, other than being in nursing school and having a little bit of it there. So, the hospice agency would go to an extensive orientation process.

Host: Autumn, what would you say to somebody who feels like choosing hospice? But they also feel like that means giving up.

Autumn Gorgone-Fleming, RN: So, I would tell that it's actually not giving up. It's just choosing a different way to live. Hospice is truly living. It's just in a different way. It takes a lot of courage for someone to choose hospice, to choose comfort. And so, like I said, we just give lots of education to the patient and to the families that it's not giving up. It's just a different way to live. And patients will often realize that they're able to have more meaningful conversations with their families and their loved ones, and it gives them time to take on a more meaningful approach and just make them more comfortable with their decision.

Host: To kind of close our conversation, this is for both of you. If there's one thing you wish everyone understood about hospice, what would it be?

Jenny Schumacher, RN: The first thing that comes to my mind and what I tell families when I first meet with them, hospice is all about living. Hospice is about living with dignity, respect, and comfort with the time that you have left.

Host: Autumn, do you have any last words?

Autumn Gorgone-Fleming, RN: Yeah. So basically, the same, like I said earlier, hospice is living. It's just a different way of living. And they do have that fear that hospice means when they sign on, death is imminent. And it's truly not. It gives them such a better quality of life because they're not spending what time they have left in a hospital. They're getting to spend that meaningful time with their family and loved ones. And they truly cherish it, and they're able to, you know, talk with family member members and share memories and stories. And they'll tell you at the end of this, the families will say, "Gosh, I wish we would've started sooner," that this was just a beautiful thing. Hospice wasn't so scary. Actually, it was really a more peaceful environment.

Host: That's a nice way of saying it. Jenny and Autumn, this has been great, wonderful information. Thank you so much for explaining hospice care and clearing up really some common misunderstanding. So, thank you again for coming on the show today.

To request an appointment with Southwest General, you can visit swgeneral.com. If you found this episode helpful, please share it and explore our full podcast library for more topics of interest. This has been another episode of Southwest General Health Talk. I'm Dr. Mike. Thanks for listening.