Maggie McKay (Host): When you hear the terms home health and hospice, do you know what all it covers? Today, we'll find out with RN Jill Newsome, Community Liaison and Hospice Ancillary Program Manager. Welcome to To Your Health, a podcast from Jefferson Healthcare. I'm your host, Maggie McKay. Thank you so much for being here today, Jill.

Jill Newsome, RN, BSN: Thank you, Maggie.

Host: Would you tell us a little bit about your background?

Jill Newsome, RN, BSN: I am a nurse. I've been a nurse for almost 30 years. I am a nurse here in a small community in rural Washington. And I work with our hospice program here. I originally spent my career in women's health and working with patients and families at the beginning of life. And when I came back to Jefferson Healthcare in 2019, I really became interested in the end of life and what happens at the other end. Lots of parallels between the beginning and the end of life. And that really intrigued me. So when there was an opening with hospice, I moved to hospice and have gradually evolved in the role that I'm in now.

Host: And for people who don't know, because I think there's a lot of confusion, at least for some, what hospice is. So, what is hospice?

Jill Newsome, RN, BSN: Hospice is a really broad term. In Jefferson County, hospice is not a place. It's a service. It is a decision that is made between a family, a patient, and a caregiver that there is a disease process or an end-of-life process that is not curable. We are now looking at the need for comfort care.

And so, a patient will elect with their primary care provider to switch their Medicare or their other benefits to a hospice benefit. It's actually a higher level of care. It is focused completely on keeping the patient comfortable, allowing the patient to live their best possible life. So in Jefferson County, when we talk about hospice, we're not talking about a hospice house. We're not talking about a place that you go. We're talking about a service, a professional service that comes to you in your home and is, again, focused on end-of-life care. You don't go to hospice to die, you really go to hospice to live the best end-of-life that you possibly can.

Host: That's the best way I've ever heard it described. You're so right. Well, you kind of answered this, but where can you receive hospice care in Jefferson County?

Jill Newsome, RN, BSN: You can receive hospice care wherever you are, wherever you call home. It can be your literal home. It can be the back of a truck, as long as we can care for you while there. We've taken care of people on boats and RVs, apartments, residential assisted living facilities. So, you can be in any one of our four facilities that we have here in our community. It can be memory care, wherever you are. If we can't control your symptoms at home, we will potentially move you to the hospital where we can get your symptoms under control, whether it's pain or terminal agitation or something that can't be managed at home or wherever you call home, then we will make sure that we get you comfortable and sometimes that does involve moving you to the hospital for a little bit of time or an ongoing basis to get things under control.

Host: So when you are receiving hospice care, you were saying how you can give it in an RV, a boat. Do the caretakers spend the night?

Jill Newsome, RN, BSN: So when you come on to hospice in Jefferson County on Jefferson Healthcare Hospice, you elect a caregiver because we are not going to give day-to-day care to you. We're not going to do the needs that you have. There are so many when you're on hospice. So, one of the things that we do is sit down and talk with you about who will be your caregiver, who will you elect to be that caregiver. It's usually a spouse, it might be a daughter, a son, a neighbor. It could be a paid caregiver. It could be a combination of all five of those things. And you make an agreement with us who will be there with you 24/7 during this time, especially as you move into the later phases of hospice where you really do need 24/7 care.

So, we talk about it early, because we want you to have that caregiver in the wings, ready to go. When that switch gets flipped, we want to know that you're not going to be home alone with no one there to take care of you. So, you'll have an ongoing 24/7 caregiver, but hospice provides you your caregiver with training so that they can administer medications that are kept in the home. They can empty a catheter. They can roll and change you. They can do all of the things. And all of our professionals come in and teach that. We just don't check you into hospice and say, "Okay, well, we'll see you next week." We really go the extra mile to make sure that you have everything that you need as well as case manager, RN visits, however often they're needed. We usually start at once a week and then we'll increase that as acuity increases. You'll have a CNA that will come out to do personal care once a week and, again, increasing it as needed. And then, we have lots of other people that come and visit, we can talk about those later. But we have a lot of visitors that come out, but we don't clean your house, we don't do your laundry. We do have 24/7 RN availability. So, you can always reach somebody with questions. With anything that you need, there's always someone available to you

Host: That's amazing. Jill, when should a patient start asking about hospice?

Jill Newsome, RN, BSN: Before they think they need it really. When you realize that you're at that point where let's say you're an oncology patient and you have tried and tried and tried all of these different things with your oncologist and some of them have worked and maybe you've gone into remission or even been cancer-free for a period of time, but you're back on that treadmill and you're finding that you're exhausted, your family's exhausted. Your quality of life is really slipping. You are not living. You are just going from visit to visit to visit, spending time on ICU and our inpatient care floor, the emergency room. Those are not things that you want to do when you just have a little bit of time left. You really want to focus on being with your family and what is your legacy and just being comfortable and being in your home and being with the people that you love.

When time gets short, you need to really focus on what's important. So talking, keeping that door open with your provider whoever they are an ED provider can write for hospice. If you're an inpatient, the hospitalist can write a hospice referral. But really looking at it before, we don't want you to wait until, you you're, know, "I'm ready to die. I'm going to go next week." It's a process to get you settled in hospice, to bring you in, to get you a hospital bed, to get you medications, to get you comfortable. And people walk around with shortness of breath and pain every day in that last year of life. It is not at all uncommon. They come on to hospice, and a week later, they're pain-free and their breath is easy. And they don't realize that they could have had that so much sooner.

We had one patient that was on for three and a half years. He was on a steady rate of decline. He wasn't just dropping off. You know, it was just a nice steady decline, which qualifies him for hospice. And he had the most amazing experience on hospice. The most just wonderful care team surrounding him and holding him up and really helping him through those last days. So, we don't know. He came on and we thought it was six months, but...

So, it's really hard to say, "You have six months left." No one has that crystal ball. No one knows. But what we want is for you to make the very best decision with your primary care provider with no fear behind it, because patients who come on hospice live longer than patients who do not. We know that you can live up to a month or more longer. Those are evidence-based studies that show that because the care is so good. And the stress in your daily life of all those appointments and ambulance rides and sitting in the ED and laying on a hard gurney, those take a toll. And you will live longer on hospice than you will live off of it. So, I like to say when I do community presentations, you come to hospice to live. You don't come to hospice to die. So, taking that fear out of it and really opening those communications as you feel you're getting closer to that point.

Host: That's really encouraging because I think when people hear hospice, like you said, they think that's like your last week or month or few weeks.

Jill Newsome, RN, BSN: I think, another thing, Maggie, is they feel like we're going to sedate them. Once you come to hospice, we're going to just sedate you, and that is not true at all. I mean, people on hospice are at their granddaughter's graduations and they're going to church and they're doing whatever they can do as long as they can do it. It doesn't mean that you're going to climb into that hospital bed, and it's the end. It's really a gift to have all those people supporting you and coming to you.

Host: Are there other services that are available to hospital patients?

Jill Newsome, RN, BSN: We have so many, and it's really exciting. When you come on to hospice, you will have a case manager, you'll have an RN, you'll have a social worker, you'll have spiritual care and bereavement, and they just provide a tremendous amount of emotional support. You don't have to be a religious person. They'll meet you wherever you are. We have seen every spectrum of spiritual care and bereavement that's possibly imaginable. And so, you'll have your spiritual care and bereavement. I have a team of 33 volunteers and some of those are specialists and they come out and they'll play music and they'll bring a therapy dog. You can go to a horse farm and visit horses that are therapy horses. We have a gardener, a master gardener who will come out and help you get your garden back in shape so that you're looking out your window at your garden that's in decline. She'll come out and work with you and you can go out and talk with her or you can just watch or just know that it's being straightened out. I have a Swedish death cleaning person who will come out and work with you on where do all these things go and what do I do with them? And she'll get you started on that. I have somebody who will come and complete your knitting project and sit by the bed so that it's all finished. And so, we're looking at things that will bring you joy and bring you completion.

And then, we have one-on-one volunteers that'll come out and do companionship and work puzzles and provide respite. But we have comfort therapists that I oversee that will come out and do massage. We have someone who'll come out and give haircuts. So, you're on hospice and it's just really exhausting. There's no way you could leave home. Leah will come out and cut and style your hair for you so that you can feel good again and not be in that point where you're just at home and you can't leave. And we want you to feel good. We want you to feel loved and we want you to feel really cared for. So, there are so many services that we provide, and they're all included in your hospice benefits. So, they come to you. Those services are supported by our hospice foundation here in Jefferson County and they are basically the way that funding that comes in, "I want to make a donation to hospice," it goes to the foundation and they disburse those funds and oversee them really carefully. So, they provide all of those non-Medicare, non-VA services, whatever your provider might be to you. And it's a pretty amazing package of services.

Host: That is amazing! I had no idea. I love that idea about the knitting and the gardening and the therapy dog. I mean, oh my goodness, you guys have thought of everything. Have you ever had somebody contact you who did something you didn't think of and offer their services and you added them?

Jill Newsome, RN, BSN: Not yet. I just started this last year. And I'm working on for spring, bringing in flowers. I want flower farms to donate so we can deliver flowers right to the door of hospice patients who would just like to open the door and take the flowers and give us back the empty vase during the growing season.

So, I'm constantly kind of coming up with ideas and putting it out. And my team of volunteers, they always come up with whatever. I present it and say, "This is what I think." And they're like, "Oh, I know somebody that does that." So, it's pretty amazing how it all just comes. I get a call from a potential volunteer, I'd say, once a week. And so, it's really nice to have a community. Jefferson County and Port Townsend, it's a little microworld. We all hold each other up and take care of each other. And it's the beauty of this little community. And it carries into our hospice care, it really does.

Host: It sounds like an ideal place to live. So, you mentioned earlier that you do not provide day-to-day care for the patient. Talk about that.

Jill Newsome, RN, BSN: Yes, the caregiver will be providing that. We give them lots and lots of support. And again, if there's a problem, you call the office and a nurse will come out. So instead of loading up into the car and trying to get to the PCP's office and checking in and waiting in a waiting room, especially like now there's COVID's back up again, you really don't want to get in your car and go sit in your PCP's office. We are going to come to you. We're going to bring all these services to you in your home, which is a pretty amazing thing. You do provide or pay for your caregiver service. And that is true of hospice everywhere. The hospice Medicare never pays for your actual physical location that you're in. So wherever you are is considered to be home and your care is considered to be caregivers in terms of your day-to-day care. And Medicare does not cover that anywhere.

Host: And how do patients begin the process of being admitted to hospice?

Jill Newsome, RN, BSN: Well, again, I would just open that door with your PCP and open it early. Be death-conversant. Be able to talk with your family. Be able to say, "This is what I want. I really want to die in the ICU. I want everything to be done. I want to hear those machines beeping right up to my last breath," or "I do not want to die in the ICU. I want my end-of-life to look like this." And whatever that is is okay. What is important is that you start to talk in your family. And that after that, you begin to take that to your PCP.

You can do advanced directives or we have a document that I like that's called Five Wishes, and it really guides you through every step of what this process would look like for you. What do you want? Do you want people praying at your bedside? Do you want your feet rubbed? Do you want no one to touch your feet because you don't like that? All these quirky little things, you can put that in your five wishes. And it's scanned into your medical document and it tells us what you want and what you don't want. So, you're opening that door up early. You know, you don't have to be 80 to open that door. You can start opening it much early and talking about with your children and with your parents. What do you want? And what does this look like for us as a family? Because death doesn't necessarily come in the order we expect it to. So, it's good to really just be comfortable with it and looking at it as the next natural step.

Host: Jill, if people would like to find out more, where would they go?

Jill Newsome, RN, BSN: They can go to Jefferson HealthCare website, that's jeffersonhealthcare.org, and you'll see a link on there for all of our different departments, and there's a link for hospice. You can go into there, and that will take you right down the path. You can reach out through either email, or you can ideally call our office and the number's right there. Call the main number for Jefferson HealthCare, and they'll get you through to us, and we'll get you on your way.

Host: That's great. Thank you so much. Thank you again.

Jill Newsome, RN, BSN: Thank you, Maggie.

Host: Again, that's Jill Newsom. And to find out more, as she said, go to jeffersonhealthcare.org. And if you found this podcast helpful, please share it on your social channels and check out our entire library for topics of interest to you. I'm Maggie McKay. Thanks for listening to To Your Health, a podcast from Jefferson HealthCare.